Miss Oblivious thinks out loud....

It's All Good!

2012-01-31T21:51:00.001-06:00

John and Marian both had their regular two-month checkups today. And they both continue to do extremely well on CAL-101. Their blood counts are all normal. And their ct scans showed that the lymph nodes are still shrinking. It has been a while since lymph nodes have even been mentioned during regular exams. They are the furthest thing from our minds right now, since they are not palpable or visible at all - and haven't been for quite some time. But Dr. Flinn said Marian only has two nodes in her entire body that are not normal. And they are only very slightly larger than normal. (A normal lymph node would measure 1.5 centimeters. Marian has two that are 2.3 cm.) John has several that have not reached the normal status, but they are still shrinking (not just stabilized). Although sometimes when nodes get as large as John's were, they never completely return to their normal pre-CLL size. Chemotherapy can alter lymph nodes permanently as well. A slight enlargement can be the result of scar tissue on the nodes. The important thing is that they have shrunk to normal (in some cases) and almost normal (in others), and they are not causing any problems or discomfort. The only CLL symptom John has is being extra tired at the end of the day. But he gets up between 4:00 and 5:00 every morning. And he has a lot of stress in his business. I would be amazed if he were not worn out in the evening!

John is nearing the two year mark on CAL-101 (in May). June will mark the fifth anniversary of his CLL diagnosis. Marian was diagnosed four years ago this month and has been receiving CAL-101 for approximately 15 months. Our office visits these days are more like parties. I doubt that Dr. Flinn has any happier patients and/or caregivers than the three of us.

Best Disney Trip Ever!

2012-01-24T20:46:00.000-06:00

If you think Disney is fun as a kid, just wait until you are a grandparent!

My First Disney Trip as a Grandma

2012-01-22T09:53:00.003-06:00

Early tomorrow morning I will be boarding a plane with my son, daughter-in-law, and two oldest grandsons (6 and almost 5), bound for Walt Disney World! I am so excited! (The only thing that would make it better is if Poppy John could go with us. But he has a lot on his plate right now.)

This trip has been planned since October and when my shoulder got so much worse in early November, I was concerned about being well enough to be able to enjoy it. For a couple weeks, I was wondering if I would have to have surgery. But I started physical therapy on November 10 and I have steadily improved ever since. I haven't taken a pain pill in over two weeks (even for PT). And my therapist told me yesterday that at the rate I'm going, I may be done with him by the time I get back! I've recovered 90% of my normal range of movement. Pushing it to that 90% point still causes discomfort, but not the horrible pain I previously had. And just doing normal activities, I'm moving well. I'm also sleeping through the night again.

It feels SO good to be getting back to normal. I was able to raise both hands all the way up in worship at church last night! First time I have been able to do that in a long time!

I started packing yesterday and I'm just about done other than a few last minute items. I spent a little time reading a website with Disney tips that a friend recommended to me (http://allears.net). I clicked on a link and heard the music of Pirates of the Caribbean. And I've been singing "Yo Ho, Yo Ho..." in my head ever since. I love that ride.

I have a feeling this will be the best trip to Disney ever, experiencing it with my grandsons.

I grew up in Southern California and made many trips to Disneyland. I've only been to WDW once since moving to Tennessee in 1993. I can't remember exactly when I went, but I know it has been more than ten years. That's the longest stretch of my life. (John hasn't been since 1973 - when he was in college - and I think that is probably just fine with him.) I have always loved the Magic Kingdom. And I can't wait to get there tomorrow. This is my first time staying on Disney property and doing the parks so many days in a row. (Hopefully my feet will hold up!)

I have been trying to eat healthier, more fruits and vegetables especially. I've also started drinking a Danactive every day (sometimes two) for the probiotics. I weighed this morning and I have lost eight pounds since my four pound gain over the holidays! I am thrilled to be starting this trip four pounds under my normal weight. I can't imagine being able to gain four pounds next week with all the walking we'll be doing. But then again, you never know. I never expected to see 128 on my scale again.

I have decided to take my laptop along with me. So it's entirely possible that I will share some Disney pictures before I get home (unless I'm so exhausted by the time I get back to my room that I don't have the energy).

I went to Franklin twice to see the boys last week. Pax (21 months) hears the boys calling me Grandma Shari, which he cannot say. And he calls me Issshhh. It is so cute. I have always called myself Grandma Shari. I never wanted to give myself some cute name that the boys would feel silly calling me as they got older. Danny called my mom Grandma Jane. So Grandma Shari sounded good to me. Joshua gave John's mom the cute name of Gramarian when he was two. And we still call her that, even though the boys can say Grandma Marian now. I always said that the only way I would ever have a cute grandma name would be if one of the boys gave it to me. And Pax finally did. I love it so much that he can call me Ish forever if he wants to (but I doubt he will want to). I think we're going to miss Pax a little bit this week, even though I believe it was the right call not to take him this time.

Well, time to ride the recumbent bike one more time before I go. And then...

Yo Ho, Yo Ho!

I had no idea these were the rest of the lyrics!

What would I tell my 16-year-old self?

2012-01-13T11:28:00.001-06:00

I have been watching the 60th anniversary celebration of TODAY all morning while heating my shoulder, drinking coffee and trying to feel like exercising. I was about to head for my workout bike when the question was asked of three regular contributors, "If you could go back in time, knowing what you know today, what would you tell your 16-year-old self?" And my mind was instantly flooded with things I would tell MY 16-year-old self.

I am almost 16 years old in this photograph. I remember being so happy with this picture when the proof came. And one of the things I liked about it was that I thought I looked older than my age. Funny how I now love any picture that makes me look younger than I am. One of the things I would tell myself at this age is that it's not BAD to be a kid. Don't be in such a hurry to grow up! There is so much to enjoy at this age and you are missing out on all of it because your head is so wound up in wanting to be viewed as a grown-up!

There's actually a long list of things I would tell Young Me right on the tip of my tongue.
So here goes...

Shari:

~ Jesus died in your place, to atone for your sins. All of your sins. The cross is as important in your life as it is in the life of someone saved out of the gutter. Your perfection comes from being clothed in Christ's righteousness; not your own good deeds and law keeping, and not because you were born into a special group of people who had some unique truths. You cannot measure up to the holiness of God within yourself and that is why you need a Savior. Obedience is about loving and honoring God, not earning something for yourself. Do not believe anyone who tells you any other gospel.

~ What empowers us to forgive others is knowing we are forgiven, accepted and loved. If our faith is in Jesus as the Son of God, we will never be rejected by God. Nothing can separate us from His love.

~ Do not let other people define you -- who you are and/or who you will become. Especially people who do not attempt to know your heart and who categorize you by your most surface traits.

~ Reject the limits others place on you. You have choices that you don't realize you have.

~ You can do things you don't believe you can do. I wish you could discover this at 16 instead of at 40.

~ Go to college and realize at a young age that one of your natural abilities is writing.You have no idea how many options are there for you. You can do so much more with your life than type and be a secretary "if your husband doesn't earn enough money to pay the bills." (I was always told that I was smart and should get straight A's. What I wasn't told was that I could do anything more than get A's and be a secretary.)

~ You are lovable, likable and acceptable with the personality God gave you!

~ Being quiet and compliant are not the most important attributes in life.

~ You do not have to disguise your extroverted personality to be feminine and "ladylike." Being passive is not a requirement of being a lady.

~ Showing emotion is not a weakness. On the flip side, being a good actress does not make you strong.

~ Willingly enduring abuse is not a virtue. It is actually enabling ungodly behavior.

~ Doing the wrong thing because you are being obedient to someone in authority will not become that person's responsibility and wrong before God. You will suffer the consequences of following wrong counsel and giving too much honor to a man.

~ Discover books early. No matter how long you live, there will always be more information to learn than you will have time to discover. You are never done learning.

~ Start exercising faithfully now and don't ever stop. Avoid junk food as much as possible. You will have cholesterol issues later in life. And 52 will be here before you know it.

I have a feeling I could go on and on because more "advice" just keeps popping into my 52-year-old head. But I'll let this one be the last because it's one that just hit my mind and triggered a lot of emotion.

~ Accept your mother as she is, the same way you are so wanting her to accept you as you are. She loves you more than you think she does. Just because she doesn't love you the way you want her to doesn't mean she doesn't love you the best she knows how. And just because your different temperament frustrates her at times, this does not mean she does not like you, that she isn't proud of you, or even that she would change you if she could. It just means she's as flawed as you are. And she doesn't always know how to relate to you. But as you get older, you are going to realize how many of your strengths came from her and you are going to see many more similarities to her than you are able to see today. Focus on the sacrifices she's made for you rather than focusing on resisting her control of you. Spend more time with her, trying to get to know her instead of wanting her to know you. Don't wait until she is diagnosed with cancer to devote yourself to demonstrating the true magnitude of your love for her. Tell her you appreciate her often. Force more hugs on her (even though she isn't that comfortable with phsyical affection). Don't laugh when she is crying for no reason (due to hormonal fluctuations). Don't make fun of her for telling you something she's excited about again and again. You are going to be just like her one day. You're missing all the things you have in common because you're so focused on how you are different. She needs you as much as you need her. I wish I could go back in time and help you see that before a cancer diagnosis made it clear. And obviously we can't go back in time. But it's okay. Because you had seven months of closeness before you lost her. She knew how important she was to you and how much you loved her. And you finally saw that she really didn't want some other daughter, like you always believed. She wanted you. And when she really needed you, you were there. And you were exactly what she wanted in a daughter.

Maybe the only person more surprised than her was you.

And finally, you will surprise yourself many times again throughout your life. Because you only realize how strong you are when you have to be.

Great Article on CAL-101 Phase One Study

2012-01-10T13:42:00.000-06:00

http://updates.clltopics.org/4156-cal-101-latest-update-at-ash-2011

Both my husband and his mother are participants in CAL-101 trials. They are now both in the extended phase, but began in separate studies. John's treatment: CAL-101 as single agent. Marian's treatment: CAL-101 in combination with Rituxan.

Both patients are presently doing well. However, Marian was one of the 24% who had a very serious bout with pneumonia last January. What this article described is exactly what happened to her. Her primary care physician diagnosed her with bronchitis and dehydration, treated her and sent her home. We then got her to Dr. Flinn immediately (because she got worse overnight) and he admitted her with a pneumonia diagnosis. It took three weeks in the hospital to get her on the road back to health. But she is now fully recovered, no recurrences of any lung inflammation and says she feels great.

New Year, New Shoulder? (Not quite, but almost)

2012-01-06T09:22:00.000-06:00

Well, I am finally writing my first blog post of 2012.

We had a wonderful Christmas. We rung in the New Year in Panama City Beach, Florida. We flew home on the 3rd and celebrated our eighth wedding anniversary on the 4th. And yesterday I returned to physical therapy for my shoulder after a week's rest.

I think the rest must have been good for my shoulder because I was able to sleep pretty well two nights in a row without any pain medication (Tuesday and Wednesday night). I hadn't been able to do that since September. And I was pleased to tell my therapist that the last time I needed pain relief during the day had been Christmas Eve and Christmas Day. He said my neck was moving better and then we tackled the stretching, pulling and pushing of my arm. He seemed really pleased with the additional movement I was getting and reminded me of where I started. It's weird because I have no frame of reference when it comes to where I was when I started. All I remember is such horrible pain with any movement. How far my arm would go in any direction is a blur. It just didn't want to move, period. Every movement they tried to increase felt like sheer torture to me. It wasn't degrees of movement that had meaning. It was simply degrees of pain. Most of the time my eyes were closed and I was just trying so hard not to cry while they stretched, pushed and pulled. (I am never successful at "trying" not to cry, by the way.)

I must be starting the thawing phase because although PT is still painful, it wasn't nearly as intense yesterday. And the moments that were the most painful were more tolerable than they have ever been. There is one specific thing they do to me that made me want to scream (I didn't) in the beginning. And it still hurts. But I am amazed at how much better I tolerate that now. I was very pleased with how well I did in PT yesterday and I did not feel like I'd been "overworked." I was not hurting last night. So I went to bed without taking a pain pill again. My expectation was that it would be like the past two nights. But I woke up at 12:30 in a lot of pain. And I was so disappointed. Because every time I have good days and good nights, I am overly optimistic that I've "turned the corner."

I didn't want to break my streak. I so wanted not to take a pain pill that I got up and put my heat wrap in the microwave instead of taking a pill. I went back to bed with heat and dozed for a few minutes (until the wrap lost its warmth). I got up and heated it again. This is how determined I was not to take a pain pill. But after tossing and turning and hurting for two hours, I finally just got up and took the pain pill at 2:30. That got me two hours of sleep. And the tossing and turning started again at 4:30. I finally got up between 6:30 and 7:00. And I've had heat on my shoulder ever since.

So, therapy most definitely causes inflammation for me. And I'm so glad I'm not going back again until Monday. At the same time, I know how far I've come. I had lunch with a friend yesterday and she told me my whole countenance is different. (I'm me again.) She said, "I knew how bad the pain was because you couldn't even talk about the pain without crying."

It's true. I remember seeing friends while trying to Christmas shop and not being able to talk without crying when they asked how I was doing. I hated it. It was embarrassing to be such an emotional mess. But the pain took a huge toll on me. I'm glad I'm past that part. Even with the ups and downs I still have, I feel 100% better mentally and emotionally.

I will have a dilemma tonight. After last night, I'm probably going to take a pain pill and make sure I sleep. I thought I was done with that.

I have another fun appointment today. I have to get a cortisone injection in my foot. I actually need an injection in both feet, but I don't know if they will give me one in both at the same time. I have neuromas (scar tissue wrapped around nerves). Yeah. That's not fun either. And they need to be surgically removed, but I keep putting it off. And I can't do crutches with a frozen shoulder. Sometimes I feel like my body is falling apart. But I know that my health issues are minor. It's easy to feel sorry for yourself in the middle of the night. But even then I remind myself of real suffering, like chemo.

I have two pieces of advice today for young women reading this:

1) Don't wear those really high heels. (They damage your feet. Trust me on this.)

and ...

2) Enjoy your youth!

Imperfectly Lovable

2011-12-30T10:11:00.002-06:00

"To the people who love you, you are beautiful already. This is not because they’re blind to your shortcomings but because they so clearly see your soul. Your shortcomings then dim by comparison. The people who care about you are willing to let you be imperfect and beautiful!"

- Kelly Turcotte Lloyd

I read this quote on my cousin's Facebook page this morning and loved it. I immediately reposted it and knew I would share it on my blog, along with the thoughts it provoked.

If you read my blog even occasionally, then you already know I have much to be thankful for. That does not mean I am without challenges or problems. And I will be the first to tell you how flawed and imperfect I am. I have always been an open book. When I see something in myself, my natural inclination is to confess.

I take self-disclosure to a new level. I'm more guilty of giving too much information than concealing or withholding. And I'll be the first to admit that's not always a good thing. But it's the personality God gave me. Sometimes I say or write something and cringe later, wondering why I couldn't just keep my feelings/thoughts to myself; asking myself if I will ever master this part of my personality. When I say this is the personality God gave me, I don't say it as a cop out for a lack of self-control. I just mean it's what I have been given to work with. And I think I have come a long way from where I started. But I still have plenty to work on. Even when I don't speak, one only has to look at my facial expression to have a clue as to what I'm thinking or feeling. No poker face here.

The flip side of that is that I am not capable of being fake. What you get is the real me. Always. Always. Always. For what that's worth. And when I see that I've been wrong (which is sometimes instantly and sometimes after much reflection), I don't wrestle with the words "I was wrong" or "I'm very sorry." And even when I don't think I did anything wrong, I always wrestle with knowing I have hurt someone or caused pain unintentionally.

For most of my life I have wanted desperately to be loved and accepted. I guess we all want that to some degree. But I wanted it in a needy, co-dependent kind of way. I look back on many years of my life and see glaringly how hard I tried to earn value in other people's lives. And that led to a sense of worthlessness and disposableness when I didn't get the loving, caring response I was hoping for. In some cases, I have been used and exploited by people because I was so determined to win them over and make them like me. And in other cases, I was simply dismissed. Both responses left me feeling, as I've shared many times, like someone who was difficult to love. Of course it was my perception, not necessarily reality. (But there is a saying about that.... Perception IS reality.)

This quote means all the more to me at this stage of my life, I think, because I've shed some of that co-dependence in recent years. I still want to be loved by everyone. But I don't NEED to be loved by everyone. And I accept in my heart, as well as in my mind, that I cannot be loved or liked by everyone. Nobody is. And my distinct flaws and imperfections will be obstacles in some relationships. I will be discarded by people for my flaws. But that no longer makes me feel worthless or disposable or unlovable. And it doesn't rock my world the way it did a few short years ago. My focus today is on those people who really do value, appreciate, and love me just the way I am. When I read the above quote, I felt a deep gratitude for those people instead of thinking about the ones who don't fall into that category.

I would change two words of the quote to apply it specifically to myself. I would swap the word beautiful for lovable. And I would choose heart in place of soul.

"To the people who love you, you are [LOVABLE] already. This is not because they’re blind to your shortcomings but because they so clearly see your [HEART]. Your shortcomings then dim by comparison. The people who care about you are willing to let you be imperfect and beautiful!"

I spent so much of my life trying to get people to see and understand my heart, to really know who I was on the inside. I thought I couldn't survive being misunderstood (especially in certain relationships). But I did survive it. Not only have I survived, I have thrived. I haven't gained the understanding of everyone whose understanding I longed for. But God has blessed me exponentially with other people whose love and understanding I have not had to work for. And through those relationships, He has shown me that the problem hasn't always been me. (Not saying the problem has never been me.)

As another year ends and a new one begins, I am thinking about how blessed and thankful I am.

I'm not thinking about my losses. I'm thinking about how much I've gained through my losses.

I'm thinking about how wonderful it feels to know my true friends do see and know my heart. I know they also see my imperfection, my flaws, my shortcomings. But the people who genuinely care about me make me feel so imperfectly lovable just as I am.

I know I have shared this before, but someone may be reading for the first time and it goes along with the theme of this post. I saw a Christian counselor regularly for four consecutive years. One of the struggles he identified in me right away was my false belief that if I could learn to choose my words perfectly, someone else would not misunderstand, would not be able to twist or misinterpret them, and ultimately that I would not experience rejection. I was very focused on saying things in just the right words (and often my inability to accomplish that). In every conflict, I would determine (in my own mind) that my choice of words must have been where things went wrong. And I would lay the "blame" on my own shoulders. In one specific session, he confronted me very bluntly:

"Shari, why do you believe that you have to say anything perfectly to be worthy of love and understanding? Rarely do human beings say anything in the perfect words. It's an unattainable goal. We are human. We are flawed. Human relationships are messy. But where there is love and mutual respect, it's not that you never make a mess; rather, you just clean up the mess and go on. In healthy relationships where you have value for being rather than doing, you're allowed to mess up."

I have reflected on and repeated those words many times.
That day they were a concept. But today they are my reality.

When couples get married ...

2011-12-27T09:04:00.007-06:00

I've written exhaustively about how thankful I am for John. I've documented on my blog what an amazing person and husband he is and how much I adore him many times. I probably make some readers roll their eyes -- or gag. But I am so blessed and so thankful and so happy ... and so expressive ... that I can't help myself.

We just celebrated our ninth Christmas together. And on January 4 we will celebrate our eighth wedding anniversary. I knew I was marrying a very special man the day of our wedding. What I couldn't know in advance was what a great stepdad and Poppy John he would be.

When two people join their lives together, other people's lives are affected. There are often personality clashes and baggage. Not all step and in-law relationships are beautiful and wonderful. So, when they are, it's a blessing to be valued, cherished and thankful for.

I remember how much I wanted John and Danny to have a close relationship when we were first married. I remember wanting it to happen really fast. And I also remember John telling me that a stepdad/stepson (fatherly) relationship had to grow naturally over time to be genuine. It could not be forced. He would not push any specific kind of relationship on Danny. He would just be a friend and have no expectations. After all, he would always say, "Danny has a dad."

John is not the type of person to ever impose himself on anyone. He is very respectful. He chose to stay "in his place" and I'm guessing that he may have also been guarding his own heart just a bit. But I remember him telling me that if Danny ever wanted more of a father/son kind of relationship with him, Danny would have to be the one to indicate that. He would never presume upon Danny in that way.

John and I have been together now for almost nine years, and married for eight. And in hindsight (especially through the lens of this past year), I see how wise John was in the way he approached his relationship with my son. They have always gotten along well. They have never had cross words or "issues." I know that Danny has always appreciated the way John loves and respects me. But a deeper relationship between the two of them has grown in the last few years. And it's the relationship I hoped for from the beginning. But John was right. You can't have it instantly. Their relationship is what it has become in large part because John did not try to make it happen.

I'm a very thankful wife and mom. The genuine love and respect between my husband and my son makes my life better, easier and happier. Neither of them causes stress for me in the other relationship. Neither of them competes with the other. There are no loyalty issues. There is just love. And I know how fortunate I am.

I'm very thankful that God blessed me with a man who would also be a blessing to my son, my daughter-in-law and my grandchildren. I waited a long time for the life I enjoy today. But when God chose to bless my life in this way, He blessed me far beyond my wildest dreams. There were blessings prior to 2003. I see God's hand in my life in many different ways since childhood. But I have truly known love and fulfillment and the joy of living in the last nine years. I don't take a single day for granted.

I love these guys and I'm so grateful they genuinely love each other.

I'm also extremely blessed and thankful to have
the most wonderful daughter-in-law in the whole world.

These are some of my favorite pictures from this Christmas.

These are my perpetual "Christmas Gifts."

Do Kinase Inhibitors like CAL-101 work well on large lymph nodes?

2011-12-23T07:53:00.005-06:00

I'm posting pictures again (before and after CAL-101) because this question was asked today in a CLL email list that I read.

My husband hated having his picture taken when his lymph nodes were very large from CLL. I remember telling him that his lymph nodes didn't look as bad as he thought they did and that he was just as handsome as ever (in my opinion). He would always give me a "yeah, right" look. But I was very sincere in saying that to him. Because his nodes increased gradually, I got used to his neck being larger and I did not think it detracted from his gorgeous face. John has the most beautiful blue eyes (which you seldom see in pictures because the flash turns them red, and when you take the red eye out, they turn black). And he has such a warm smile. (And I adore him.) So his swollen neck did not diminish my attraction to him in the least. But he hated his neck. And not only was the swelling visually unattractive in HIS opinion, the nodes were very uncomfortable and even painful at times. The nodes you see in these pictures (in his neck) were swollen just as large in other areas of his body; under his arms, in his abdomen, and in the groin area. We used to go for walks in our neighborhood, but we had to stop because he said the groin nodes hurt too much to enjoy it. That was right before he started chemo in 2009.

This picture was taken in 2008.

This picture was taken in 2009.

Here's what John's neck looks like now (pictures taken last night).

John has been taking 50 mg. CAL-101 twice a day since May 2010.

When I look back now at the "before" pictures, I understand why John gave me the "yeah, right" look when I told him how good he looked. But the truth is (and feel free to gag), he is the most handsome man in the whole world to me - with or without enlarged lymph nodes - not only because I think he's good looking, but because the person inside is good to the bone. He's made me feel like Cinderella from the first week we met. And when I look at him, I see Prince Charming. Still. But now that his neck is normal again, it's pretty obvious, even to me, just how huge his neck actually was.

Bone Marrow Effectiveness:

Another question often asked is how effective Kinase Inhibitors are on the bone marrow. John has not had to have another BMB. His marrow was 30% infiltrated before FCR and 20% infiltrated post FCR. But his mom, who is also on CAL-101, had a Bone Marrow Biopsy after six cycles. Her marrow was 80-90% infiltrated/impacted with CLL cells before treatment. Six cycles later, it showed 30% CLL. I would venture to say that John's has improved as well. But I'm glad he has not been required to have another biopsy.

Just to remind those who have not been following John's progress, FCR did very little for him. The nodes improved about 50% while going through treatment. But within a couple of months of the last infusion, they were growing again. Had there been no CAL-101, our only hope was stem cell transplant. Obviously, taking a pill morning and night is a whole lot more appealing than transplant. And both John and his mom have good quality of life. Marian says she feels great. She just gets tired more than she used to. But she is 79 and still goes dancing. John still has fatigue, but not debilitating fatigue. He does everything he is used to doing, including running on the treadmill three nights a week. But he falls asleep watching TV a lot more than he used to.

We have so much to be thankful for.

The "W" in Christmas

2011-12-22T09:27:00.001-06:00

I didn't write this, but I wanted to share it...

Each December, I vowed to make Christmas a calm and peaceful experience.

I had cut back on nonessential obligations - extensive card writing,
endless baking, decorating, and even overspending.

Yet still, I found myself exhausted, unable to appreciate the
precious family moments, and of course, the true meaning of
Christmas.

My son, Nicholas, was in kindergarten that year. It was an exciting
season for a six year old.

For weeks, he'd been memorizing songs for his school's "Winter Pageant."

I didn't have the heart to tell him I'd be working the night of the production. Unwilling to miss his shining moment, I spoke with his
teacher. She assured me there'd be a dress rehearsal the morning of the presentation.

All parents unable to attend that evening were welcome to come then.

Fortunately, Nicholas seemed happy with the compromise.

So, the morning of the dress rehearsal, I filed in ten minutes
early, found a spot on the cafeteria floor and sat down. Around the room, I saw several other parents quietly scampering to their seats.

As I waited, the students were led into the room. Each class, accompanied by their teacher, sat cross-legged on the floor. Then, each group, one by one, rose to perform their song.

Because the public school system had long stopped referring to the
holiday as "Christmas," I didn't expect anything other than fun, commercial entertainment songs of reindeer, Santa Claus, snowflakes and good cheer.

So, when my son's class rose to sing, "Christmas Love," I was slightly taken aback by its bold title.

Nicholas was aglow, as were all of his classmates, adorned in fuzzy mittens, red sweaters, and bright snowcaps upon their heads.

Those in the front row- center stage - held up large letters, one by one, to spell out the title of the song.

As the class would sing "C is for Christmas," a child would hold up the
letter C. Then, "H is for Happy," and on and on, until each child holding up his portion had presented the complete message, "Christmas Love."

The performance was going smoothly, until suddenly, we noticed her; a
small, quiet, girl in the front row holding the letter "M" upside down - totally unaware her letter "M" appeared as a "W".

The audience of 1st through 6th graders snickered at this little one's mistake. But she had no idea they were laughing at her, so she stood tall, proudly holding her "W".

Although many teachers tried to shush the children, the laughter continued until the last letter was raised, and we all saw it together.

A hush came over the audience and eyes began to widen.

In that instant, we understood the reason we were there, why we celebrated the holiday in the first place, why even in the chaos, there was a purpose for our festivities.

For when the last letter was held high, the message read loud and clear:

"C H R I S T W A S L O V E"

And I believe He still is.

Communication

2011-12-21T13:48:00.001-06:00

I just got home from physical therapy and I learned something today. I can't just wince and cry and apologize for being a wimp. I have to communicate and be my own advocate.

When it comes to being someone else's advocate, I'm one of the best. But I don't think I am quite as assertive when it comes to myself.

I went into therapy today very fearful of being hurt. When John greeted me and asked how I was doing, I told him how bad I'd been hurting. I showed him where the pain was and he said that pain was from my neck. He asked about my movement and I told him I hadn't lost any movement, I was just in constant pain and I assumed it was inflammation. I told him - in tears - that I didn't care if he thought I was a wimp or not, I could not take a lot of pain today and asked if he would go a little easier on me. He asked if I thought he had overworked me on Monday and I said yes. He said he was sorry. I told him it was so grueling, I left thinking that he was of the old school mindset that he had to hurt me to get me better. He said, "No. I want to push you. But I do not want to hurt you." And I could tell he meant it.

Today's session was a completely different experience from Monday. He frequently asked me, "Are you doing okay?" And he was very compassionate and gentle. I left feeling better than when I arrived. I do have a pain pill in me (I always take one before therapy), but yesterday I had pain even with pain medicine. And right now I am not in pain. I'm just a little sore. Which is nothing.

Because of my therapist's dry sense of humor and not knowing how to take him, I was inhibited and did not communicate effectively Monday. A lot of that stems from my fear of being thought of as a baby. I don't know why I care so much if anybody thinks I'm a wimp. So what if I am? And I went in today not caring what he thought of my toughness so much as making him understand what I could and could not take. But once I did that, I realized I could have done that Monday. It is my responsibility as the patient to communicate what I cannot tolerate.

It also dawned on me that Daniel (my first therapist) had the benefit of working with me exclusively since I began therapy in early November. We got to know each other. He didn't have my complete trust the first day and probably not on the second day either. But over time I became comfortable and relaxed in his care. And today I felt a lot more comfortable with John.

My friend Kathy (who is an experienced RN, a loyal friend, and a very compassionate person) was ready to string him up Monday night because of what I wrote about my sensitivity to the jokes. But I really didn't believe he meant any harm, and today I'm sure of that.

We all have different personalities, different communication styles, different senses of humor. We are all imperfect people. None of us can meet the needs of every single person we encounter. We have to cut each other slack as human beings. And, most importantly, we have to communicate effectively and not assume something is obvious. I thought my tears were communicating how much pain I was in. But why would they? I cry easily. So far, I've never been able to impress anybody with stoicism. And I've had a few tears in my eyes even on the days I felt like I was enduring the pain well.

I think I made some progress today in caring less how I am perceived. This stupid inner struggle I have with the fear of being called a baby is just that; stupid. Who cares? If I'm a baby when it comes to pain, then I'm a baby. Doesn't make me a bad person. Just makes me a baby.

CLL, Kinase Inhibitors, and Patient Advocacy

2011-12-20T20:41:00.002-06:00

This is an excellent video from the recent ASH conference.

http://www.patientpower.info/video/update-on-kinase-inhibitors-for-cll-where-are-we-now

I am so thankful both my husband and my mother-in-law have been able to participate in clinical trials for CAL-101. When John failed chemo, it certainly did not seem like a blessing. But that was how he qualified for the clinical trial with CAL-101, single agent therapy. His mom qualified by being over 65 and untreated. Both needed this treatment at precisely the time each trial was off and running.

These drugs may make it possible for CLL patients to live out their normal lifespans.

http://www.patientpower.info/video/reflections-and-major-developments-in-cll-from-ash-2011/

When John failed FCR, the subject of stem cell transplant was on the table. I had been reading about CAL-101 trials and corresponding with an online CLL friend who was in a trial with Dr. Byrd at OSU. I was convinced John needed to try CAL-101 rather than transplant and I pushed for that. Between appointments with Dr. Flinn, I called Dr. Byrd's office to see if I could take John there -- just in case Dr. Flinn was not participating in the same trial. And I told Dr. Flinn how much I wanted John in that trial, even if we had to travel. Fortunately, Dr. Flinn was participating in the same trial and he said he would try to get John enrolled in it. Which he did within the following three weeks. Right after John started treatment, that trial closed to new CLL patients.

CAL-101 started shrinking John's lymph nodes within days of his first dose. And John never had a big spike in his white count, as many patients do in the initial weeks of CAL-101 therapy. Perhaps that is because he had recently received FCR. Or maybe he was just an ideal candidate for CAL-101. All I know is, it has worked beautifully. And nineteen months after starting CAL-101 at the lowest dose, his blood counts and lymph nodes are normal.

Apparently, it has been reported that only one CLL patient has responded well to the lowest dose of 50 mg. So we know John is that patient. His mom has done well on 100 mg. And many CLL patients are doing well on doses of 150 mg. and higher. It's exciting to know that John will have the option of increasing his dose in the future if needed. But for now, I'm glad he is taking no more than he needs to keep his CLL under control.

This is a very exciting time in CLL research. These new drugs may eliminate the need for chemotherapy for many patients, improving quality of life as well as lengthening survival rates. I'm thrilled that my husband and mother-in-law are participants in this cutting edge research.

When John was diagnosed in 2007, we had no idea what was ahead. But God did. He was never surprised. And He has guided our path. I told John the other night that I feel like God put me in his life for this battle - because God knew I would not be passive. John would have been.

For those of you reading who do not know our story, John received his initial diagnosis from a local hematologist. About three weeks had passed between his high white count showing up in routine blood work and our appointment with the hematologist. During that time, I did almost nothing but read about CLL online and join support groups. I was a sponge. I soaked up information and I cried, worried and projected. I was sharing with John what I had learned about the importance of seeing a specialist. And we'd made an appt. for a thorough evaluation at Mayo. I knew we needed to find out all of John's prognostic markers. I gave John a mini crash course in what I'd been learning about treatment options and how important treatment decisions were. I told him that not just any doctor would do and I didn't want to make that decision based solely on convenience. John would have. It would have meant less time away from work. I didn't care about that and I was vocal about it.

I'm reiterating all of this to set the stage for that first appointment. On our ride to the doctor's office, I told John that I was going to ask certain questions and the way the doctor responded would let me know his level of expertise in CLL. John said, "Okay. But do me a favor. If he says the wrong things, let's not challenge him. Let's just smile and nod and then you can tell me he's not the guy after we leave." I agreed.

In this initial examination, the hematologist in question told John that his lymph nodes could be swollen as a result of infection. So he gave him a Zpack and said if they went away after taking the antibiotic, good. If they didn't, they were swollen from the CLL and John would need to immediately start treatment. At this point, we didn't even know all of John's markers. And I knew that there were milder options we could at least consider before going straight to chemotherapy. So, I asked what kind of treatment he would use. He answered, "FCR." I said, "That's chemo. You would immediately proceed to chemo?" And in a very dismissive, flippant (in my opinion) tone, he said, "Well, yes..." but in his thinking, aspirin was chemo. And then he laughed.

I didn't find that amusing at all. I wanted to say, "Oh yeah? I guess you've never had to take it because I doubt that a chemo patient would agree with your assessment." But I kept my promise and kept my mouth shut. However, I knew in that moment that I would never entrust my husband to that doctor. And when we left, I told John that if I'd learned anything, I had learned that he did not need immediate treatment and we had time to consider options other than going straight to chemo. And I explained to John why this was not a treatment we should rush into. One of the points I made to John that day was that there were going to be new, cutting edge therapies in development and I wanted him to take his time in making critical treatment decisions because, once made, side effects and complications could not be reversed. I never tried to make John's decisions for him. But I took seriously my role of making sure he did not make uninformed decisions.

We never went back to that doctor. On the way out the door of the building, I said, "I don't like that guy and he is not the right doctor for you. I will find someone who is." I was actually pretty ticked off about the aspirin is chemo remark. And for a long time I considered writing him a letter. But I never did. Shortly thereafter, an online CLL friend (from the CLL Christian Friends forum) told me there was a CLL specialist in Nashville by the name of Dr. Ian Flinn, and he had recently come here from Johns Hopkins. I called immediately and made an August appointment. In the meantime, we went ahead and kept our July appointment at the Mayo Clinic in Rochester for a complete evaluation with Dr. Clive Zent. And during our consultation with him, John mentioned Dr. Flinn and asked Dr. Zent's opinion of him (which was glowing, by the way). Dr. Zent told John that if he had a specialist like Dr. Flinn within an hour's drive, he should not consider going to anyone else. I loved it that a Mayo doctor was reinforcing all the same things to John that I had been saying to him.

As a result of all the research I had done those first few weeks, I understood everything Dr. Zent had to say to us in that consultation. Nothing went over my head. And because there had been a few well-meaning friends who had cautioned that I might be reading too much on the Internet, I felt a great deal of satisfaction when Dr. Zent emphasized a lot of the same points I had been emphasizing. I didn't have one single detail wrong as a result of my online research. I was a highly educated CLL advocate right out of the gate. And it felt good to have that substantiated by our visit with Dr. Zent. I never said it, but I was thinking, "Well, I guess you see now that I do know what I'm talking about." : )

I'm revisiting these details for a very specific reason. If John had put himself in the care of that first doctor and gone along with his recommendation, he would have received FCR in 2007. As it turned out, FCR did not even work for John. CAL-101 wasn't available then. And who knows what our options would have been realistically. John might have had no good option other than transplant. And 40% of CLL patients who have transplants don't survive the transplant. (That was the percentage the last time I researched it.)

When we consulted Dr. Flinn, he did not urge John to immediately start chemo. He said John could try to tolerate the lymph node swelling for a while and try some milder treatments before electing to undergo chemo. In the summer of 2008, John received Rituxan (a monoclonal antibody) infusions for eight weeks. It did not give him a remission, but it reduced the nodes enough to buy him some time. And in September of 2009, Dr. Flinn suggested that John might want to go ahead and have FCR. He hadn't urged us to rush into it, but he didn't want to see John put it off too long, either. FCR gives most patients a decent remission, and some a long and deep remission. Dr. Flinn was hopeful that John would respond well. But he didn't. His last infusion was the last week of January, 2010. The lymph nodes only shrank by about 50% and within weeks the lymph nodes were growing back.

I pressed for CAL-101 before considering transplant and Dr. Flinn did not object. He got John a spot in the trial. And now John is a star patient on the lowest dose.

There was no way to know for sure that CAL-101 would work for John. But I'm sure thankful we had the opportunity to find out. And if John had failed chemo in 2007, his whole situation would have been irreversibly altered. I am so glad I learned the importance of consulting a CLL specialist before proceeding with any course of treatment. And I'm thankful I had other CLL patients to turn to online, who helped to educate and inform me that treatment decisions for CLL, which is chronic, are not urgent decisions that one has to make overnight. You have time to gather information, get more than one opinion, consult a specialist, research your options. Because I knew those things early on, I was able to look out for my passive husband, who would have more than likely not researched or challenged whatever that first doctor told him to do. That is his nature. And he might not be here to be in this clinical trial as a result.

I'm not saying any of this to toot my own horn. John has been a blessing to me more than I could ever be to him. But I know I have played an important role in his health care and I sure feel good about that. I sometimes think this was one of the main reasons God sent me to John. It wasn't his time and I got to be God's instrument. In most ways, John takes care of me. But in this way, I feel tremendous satisfaction in having taken such good care of him.

Any time God puts someone in my path who has just received a diagnosis, I risk being perceived as overbearing in stressing the importance of consulting with a specialist in their particular disease. I do that because I know how important it can be. I do it because I genuinely care.

Our current situation could have been so different and our choices were more critical than we even comprehended. I was not about to entrust the care of my precious husband to an arrogant doctor with a casual attitude toward chemotherapy. And I have never regretted being vocal about that.

Why does the truth hurt?

2011-12-19T20:04:00.002-06:00

I am still plugging away at physical therapy. But I did not leave feeling like Rocky today. I left feeling like my old wimpy self.

Today was really hard. I had a different therapist. He is a really nice guy and he was "overseeing" my therapy up to this point. So I've gotten to know and like him. But last Friday was the last day for my previous therapist (the one who was working with me the most). So, today the "overseer" became the main therapist. And his style is a little different.

I had gotten to where I wasn't in quite as much intense pain during therapy. I was consistently making progress. And Daniel (the therapist who left) was able to push me a little further every single appointment. So I know he wasn't letting me slide or going easy on me because the therapy was always challenging. But I thought I had toughened up and was enduring the pain better than in the beginning. And that was encouraging to me. Daniel seemed to agree that I had gotten a little tougher. (I realize he might not have really thought I was, but he was convincing and it made me feel good nevertheless.)

Many times over the last few weeks, I have thought about how fortunate I was to be assigned to him. The first day I went in there, I was scared to death of both of them because of my previous bad experience with shoulder therapy (all pain/no gain). But in no time at all, I was working well with Daniel and he seemed to know when to back off. So I became more trusting and more relaxed in spite of knowing pain and discomfort were coming. I stopped dreading physical therapy.

Today was really difficult for me. I said that already, didn't I?

Don't misunderstand. Both therapists are great. I know they have to hurt me to help me. But I could tell I wasn't "trusting" John today the way I had grown to "trust" Daniel. I was trying, but I was apprehensive.

John has a dry sense of humor. And when he teases me, I am never quite sure he is teasing. For instance, feeling very self-conscious about my tears and lack of toughness, I said, "I thought I had toughened up, but maybe I haven't." And without missing a beat, John said, "That isn't your strongsuit. But if it hurts, it hurts." And then a little later I said, "I'm sorry I'm such a wimp." And John said, "I'm sorry, too." And he doesn't laugh when he says it. My inner affirmation seeker wants him to say, "You're not a wimp."

I was trying to explain this to John (my husband) tonight. I told him that part of me absolutely knows John (my therapist) is just kidding. But I left therapy this afternoon feeling down. John (my husband) laughed and said, "You can't personalize stuff like that." I agree. It's stupid. But I can't help it.

You feel so vulnerable and helpless when someone is twisting and pulling your arm in ways it does not want to go. You feel especially vulnerable when you're lying there crying like a baby, taking deep breaths (or forgetting to breathe entirely) because of the pain. How I wish I could show no emotion, make no sounds, produce no tears, etc. But I can't. So, taking all of that "truth" into consideration, why does the truth hurt my feelings? Truth is...

I am NOT physically tough. It is NOT my strongsuit.

So, if I can say it about myself, it shouldn't bother me for anyone else to say it. Right?
But it kind of does anyway.

I met someone the other day who is also going through physical therapy for frozen shoulder. She said, "I can take pain, but the pain of frozen shoulder is nauseating, it is so bad." It made me feel better to hear someone say that who does consider herself tough. Because only someone who has experienced this knows how painful it truly is. I know there are worse things, but that doesn't make it easier.

I told John this afternoon that I thought I had overcome my fear and dread of physical therapy. But I now think it's back. I'm sure he's right that I'll overcome it again.

But maybe not this week.

Oh man, I'm going to feel stupid for posting this later (when I'm feeling better).
But it's the truth of how I feel right now.

Christmas Commercial

2011-12-08T21:05:00.002-06:00

Great job, John & TJ!

8 Week Update: John & Marian

2011-12-07T15:04:00.000-06:00

John and Marian started out in different Phase One CAL-101 clinical trials. John's trial was CAL-101 as single agent, for patients previously treated and either relapsed or refractory to treatment. Marian's trial was CAL-101 in combination with Rituxan, for older, untreated patients. Each of those trials consisted of twelve 28-day cycles of treatment. John's; oral CAL-101 alone. Marian's; oral CAL-101 plus weekly Rituxan infusions for the first eight weeks. John completed his first twelve cycles in April of 2011. Marian completed her first twelve cycles in August of 2011. And now they are in the same extended phase study of CAL-101, which they will remain in as long as the drug continues to work for them (or until the drug becomes FDA approved for CLL). They each take a capsule morning and night. John takes 50 mg. Marian takes100 mg.

Their appointments were not in sync previously. But we now have them going on the same day every eight weeks (which is really great for me since I go with both of them). And yesterday was the day.

Fortunately, there is nothing to report other than how well they both are doing!
And here are their numbers:

John:
WBC      7.39
ALC       1.51
NEUT     4.08
RBC       4.67
HGB       16.1
HCT        47.3
PLT         244

Marian:
WBC       11.0
ALC        4.56
NEUT     5.28
RBC        5.19
HGB       13.8
HCT        44.2
PLT         183

Both John and Marian had a slight increase in their white count. But the increase is in their neutrophils, not their lymphocytes, which is a positive. Everything looks strong and stable. Even Marian's red counts are very good this time (they have been slightly low at times).

I've been blogging about their status for quite some time. So anyone who is interested in previous information or what their status was prior to CAL-101: all you have to do is use the search bar or look in my archived posts.

Surprises in Life

2011-12-01T07:34:00.002-06:00

My son was ordained as a Deacon in the Anglican church last night. We attended the ordination and, throughout the service, I kept thinking about the surprising twists and turns of life. I whispered to John, "Danny becoming a pastor is no surprise to me as a mom, but this type of ordination was not something I could have ever imagined." I didn't mean it in a bad way. It's just that I grew up about as opposite of this formal, liturgical style of worship as you can possibly get. And so did Danny.

I am not Anglican. But I enjoy visiting Danny's church (Church of the Redeemer in Nashville). And the people at Redeemer are lovely, as were the people in the church where Danny was ordained.

I've grown in my faith a great deal over the last nine years. I've learned to appreciate different styles of worship. And I trust God more than ever. I have seen God's hand in Danny being where he is. I know God has always had a plan for his life. And last night was a part of it.

I'm proud of you, Danny! And I love you very much!

Frozen Shoulder and Physical Therapy

2011-11-29T22:34:00.002-06:00

I began physical therapy for my frozen shoulder on November 10. That first day, I was at the peak of my pain and loss of movement. I was in severe pain all the time, even when I didn't try to move my arm. I could barely even get dressed. And because the pain was so severe, I was scared to death of the physical therapy. I knew they were going to have to hurt me to help me get better. And I had so much anxiety, I couldn't even talk without tears on my first visit.

But you should see me now. I have made so much progress in three weeks. I think my therapists are even surprised. I laughed today and said, "I bet you didn't have me pegged as a potential star patient that first day."

I started out going to therapy daily. And now I go three days a week. I paid for November today. Ouch!
(A different kind of pain.)

My shoulder is not back to normal yet. I still need a pain pill at night and before physical therapy. But the pain I have now is different. It's more achy and sore, as opposed to the very acute and sharp pain of being completely frozen. And after therapy, I usually get relief from the aching for the rest of the day. I am the most stiff and sore in the morning. But exercising helps. My therapist says: "Motion is lotion." So I try to alleviate the ache by moving and stretching as much as I can. And I'm not taking regular pain pills during the day anymore.

PT is challenging and it does involve pain. But the pain is no longer excruciating. It still causes my eyes to water at times. But I've toughened up and am tolerating it so much better. I told my therapist today that I don't even dread coming anymore because I know I will feel better afterward and I can see how much it's helping me.

I have worked hard and followed instructions, making myself do the homework exercises assigned by my therapists. And they have told me that doing so much work at home has played a big role in my response to therapy. Every time I gain a few more degrees of movement, my therapist makes a big deal out of it and has had me "show off" to other therapists how far I've come since that first day. He always tells them how hard I've worked (at home, as well as there). And it motivates me to keep pushing myself.

Honestly, the most important thing to me was pain relief. I do need to be able to lift my arm, but I've joked several times that I really don't even care if I can't put my arm behind my back. I'm just tired of being in so much pain. But the pain is from impingement and it will get less and less as I regain more natural movement. So I'll keep working.

I gained several more degrees going back with my arm today. And I asked my therapist if I will just continue to get better from here on or if I could regress. He said the only way I would not continue to improve is if I stopped moving and stopped doing therapy. Then the shoulder capsule could start freezing up again.

Not a chance of me letting that happen.

Here's a little YouTube video I found on this condition from "The Doctors"...

The Day After

2011-11-25T11:17:00.004-06:00

Participating in Black Friday sounds like torture to me. I'm always exhausted the day after Thanksgiving. And I don't love to shop in the first place. So I can't imagine looking forward to the crowds and chaos of Black Friday. I prefer Quiet Friday.

I saw a piece on television this week about a group who is protesting the way commercialism is now taking over the Thanksgiving Holiday. Black Friday is almost eclipsing Thanksgiving Day and shopping is eclipsing (for some) time that used to be spent enjoying family. But for me, Thanksgiving will always be about family time and lots of great food, followed by a day of recuperating from all the hard work. In spite of the reality of hours and hours of preparation and hundreds of dollars spent, all consumed in a matter of minutes, I enjoy hosting Thanksgiving. And this year was no exception -- except for the fact that I had to medicate (my shoulder) and enlist more help.

This year, Cheryl, Rebecca and I cooked the meal together. I just knew I couldn't do it all myself with my shoulder limitations and pain. So they both spent the night Wednesday night and we started team-cooking in the morning. It was really fun. Danny, Rebecca and the kids stayed last night, too. And after they left, I just sat down with my microwaved moist heat. I did manage to unload the dishwasher and start a load of laundry. But I'm still trying to work up the energy and motivation to do the much-needed straightening up and vacuuming. I was so thankful that John, Rebecca and Cheryl did the dishes and divided up the leftovers last night, insisting that I sit down.

I can't fathom going shopping today! Or anywhere, for that matter. I am so tired.

However you are spending it, I hope you're enjoying the Thanksgiving weekend!

Here are a few of my favorite Thanksgiving pictures this year...

We didn't eat until 4:00. But we spent the whole day together. The guys snacked on some cheese and crackers for lunch while the girls cooked. (But John always does the turkey, which was in the oven at this point.)

My nephew Matt and me...

Cheryl preparing the potatoes...

More turkey broth for the gravy, please...

Nicole, reading to Pax...

The kids' table (minus Jackson and Pax, who were asleep)...

The big table...

The kiddos...

(Joshua, Andrew, Jackson, Nicole and Pax)

Pax and Poppy John...

Listening to My Son Preach...

2011-11-20T09:24:00.002-06:00

I am not a morning person to begin with, and I have been even less a morning person as I've struggled with my frozen shoulder. John has been particularly exhausted this week, and we did not make it to church last night. Since our church offers services both Saturday night and Sunday morning, we would normally have gotten up and gone to church this morning. However, when we went to bed last night, I was hurting and I told John that I probably would not be able to go. I love to go to church and I don't look for reasons to miss. But I suggested staying home.

Because of my legalistic roots (going to church four times a week and having guilt imposed for missing a service), John's favorite response is always: "We won't burn in hell for missing a service." He knows I don't go to church out of fear (I remind him every time he makes this joke), but he seems to like the joke anyway. I guess I do still feel a twinge of guilt over missing church, if I am completely honest. But not because I think I will go to hell for it. It's because I am so thankful for all that God has done for me and I don't want to be lazy and complacent in my response to His faithfulness to me.

I tell John I love him all the time (pretty much incessantly) and occasionally I will ask him, "Do you FEEL loved?" He has always answered yes. And it's not that I doubt that he does. But in many relationships where a person has told me they loved me, I have not FELT loved by their behavior toward me. So I want John to know how important it is to me that I am demonstrating how much I love him as well as telling him I love him. No matter how much I feel love for him in my heart, if he doesn't feel loved, I'm missing opportunities to convey my love in a tangible way. (This is true in every relationship.)

I don't ever want my husband to feel taken for granted. And that is the best illustration I can think of to describe this desire in my heart for God to FEEL my love and gratitude for what He's done in my life. I don't believe it's enough for me to simply tell Him I love Him and I'm thankful. I want my actions and choices to demonstrate my love and gratitude. And when I don't make a full effort, I'm not doing that. Which makes me feel disappointed in myself. I don't feel condemnation from God or fear of consequences. I just feel that I have missed an opportunity to demonstrate my love and thankfulness. So I woke up this morning thinking that I should have made a greater effort.

My next thought was that I could turn off the TV and listen to Danny's last sermon on the podcast. I love listening to my son preach. In most (if not all) of his sermons that I've listened to, he shares something about himself as an example of a particular weakness. (I love this about my son. He does not try to hide and deny his own weaknesses. He uses them to point others to Jesus.) Although I know him well and am not surprised by the things he reveals about himself, I enjoy hearing him talk about what he was feeling at certain times in his life that I may not have completely discerned. Hearing him relate events that I also remember (from a different perspective), sometimes causes me to question my parenting or wonder how I might have done a little better. But I did my best and I can laugh about my shortcomings.

When anyone gives me credit for the person Danny has become, I am quick to give the credit to God. I did some things well and some things poorly. I believe I loved him well and attempted to instill the right values and priorities in him. But I made plenty of mistakes. I know there were times he felt responsible for me when he shouldn't have because I leaned on him (when I shouldn't have). I know in my heart that he could have turned out very differently as a result of the particular dysfunction of the home (and church) he was raised in. But God had a plan for his life and I believe Danny is a product of God's mercy and faithfulness -- not only to Danny but to me, as a mom. And I never feel that more than when I listen to Danny preaching. No matter what he preaches on, I feel overwhelmed by God's faithfulness, love and mercy as I listen to my little boy, now a grown man with sons of his own, opening up to others, sharing his vulnerabilities and fears, proclaiming the Gospel.

I have never heard a sermon on the parable of the talents in quite this context of fear before. It has given me a lot to think about.

I am not sharing the sermon simply as a proud mom. Self-protection and self-preservation are instincts in all of us. They are rooted in fear. This is a very thought-provoking sermon on how to overcome fear rather than succombing to the pitfalls of self-preservation.

So here's a link if you want to listen...

Freedom From Fear

P.S. to My Earlier Post

2011-11-15T13:09:00.002-06:00

There is a huge difference in my mental outlook prior to physical therapy and following physical therapy. I wrote my first post this morning as I anticipated the pain that was in front of me.

However, once again, I got through it and am better for it. And I don't feel depressed like I did when I got up this morning. I feel hopeful and encouraged that I can do this.

I will not lie. At the most intense moments, in spite of my full effort to cooperate and be compliant rather than resistant to the therapy, there were tears spilling out of the corners of my eyes. One movement in particular is almost more than I can take. And when one therapist told the other "She's not a fan of this one," I said, "No, no, no, I HATE that one."

But after it's over, I have less pain and I can move a little more than I could prior to the session. It's a process and it's going to take time, but I can see improvement and that is very encouraging. That will keep me going back for more.

Plus, my therapists (Daniel and John) at Baptist Sports Medicine are very kind. And they always succeed in making me laugh during therapy, which really helps me release the tension.

I'm going to push through this. And although I walk into therapy with fear and dread,
I leave feeling a little like Rocky.

Trying to Stay Positive...

2011-11-15T08:35:00.001-06:00

I read more about Frozen Shoulder last night and learned that only about 2% of the population gets it, but of those who do, about 15% will eventually have it in both shoulders.

Frozen Shoulder happens more to women between 40 and 60.

The average duration for the three phases (freezing, frozen and thawing) is 30 months.
(The first phase is the most painful.)

It is considered the worst shoulder problem you can have (as far as pain and loss of movement).

They don't know definitively what causes it and there are no quick fixes.

The only good news is that it won't usually happen again in the same shoulder (unless you have diabetes, which I don't). And it will eventually get better (which is very good news).

But in spite of the "good news," needless to say, I went to bed feeling down about what I may still have ahead of me for quite some time. My first bout with this (in the right shoulder) lasted almost a year. But that was just when the pain got better. I was probably "thawing" much longer because I do remember it took a long time for me to be able to move it normally even after I wasn't hurting all the time.

The left shoulder began freezing in August. So I am only three months into this. Just thinking about the road ahead made me feel so depressed last night. I looked at John with tears in my eyes and told him what I'd read about thirty months. He reminded me that it didn't last that long the first time and it wouldn't necessarily last that long this time, either.

I went to sleep with the help of pain meds and a muscle relaxer. I slept better last night. I woke up once or twice, but decided to see if I could go back to sleep without more medication and I did. I spent an hour and a half soaking in hot water this morning. I can't do my exercises until after I've had a lot of heat. My PT is at 10:30, so I'll take my pain pill around 9:00.

I have to admit, I still feel down emotionally this morning even after sleeping better. I'm dreading physical therapy. And I don't feel like doing anything or going anywhere right now. Everything feels like too much effort. And simply getting through each set of at home exercises (five times a day) takes all the energy I have.

A CLL friend wrote to me. She reads my blog and wanted me to know she's been through this, she considers herself very "tough," and the pain of making the smallest wrong movement was some of the most excruciating pain she's ever endured. Every time someone tells me they understand what I'm going through, it helps. Brenda, if you are reading, thank you for writing to me.

I'm trying very hard not to project into the full duration of this because, at times, that just makes me want to lay down and cry. And I have way too much to be thankful for to do that. I am so aware at all times that I could be facing much, much, much greater challenges than I am. I have enjoyed good health all my life and all of our bodies will at some point fail us in some way, causing discomfort and healing challenges. I can't expect to get through life without pain. But I can't wait for this to be behind me.

I woke up this morning to an encouraging note from my friend, Robin.
She wrote:

The only way to handle this is to take it one day at a time and not anticipate the length of time. No matter how long it is you'll be placing your care in God's hands one day at a time and He will carry you through it.

I know she's right and I needed this reminder. For now, it's all I can do just to get through one day at a time.

Thanks for reading and thanks to all who have encouaged me, prayed for me and listened to my recent whining.

Time to tackle my exercises now.

It's more than being complicit...

2011-11-12T10:07:00.002-06:00

Obviously, sexual abuse is on everyone's mind right now because of Penn State.

If you've ever been close to a similar situation, you cannot help but notice all the parallels. And I have found myself wondering all week how certain people are reacting to this situation; people who have handled abuse the exact same way and claimed they did nothing wrong. Are they keeping their mouth shut as they watch this news coverage, self-consciously realizing they did the same thing? Are they hypocritically reacting in outrage, righteous indignation, and contempt over strangers who more vigorously protected perpetrators and the image of an institution rather than innocent children?

I just can't help but wonder this. If someone has kept the same silence and later claimed "no wrongdoing" - how do they react to this news in their hearts and in the privacy of their own homes? If they feel self-conscious of the hypocrisy, there is at least hope that they have a conscience. But if they can feel moral superiority and sincerely be appalled at the news coming out of Penn State while clinging to "no wrongdoing" on their part? What does that reveal of their heart? I am not writing this as a judgment of anyone. The Bible tells us that what comes out of a person reveals what is in the heart. I think we are supposed to pay attention to such things. And we are to examine our own hearts. The truth is, there is hypocrisy in all of us on some level. We just try not to look at it, which is exactly the opposite of what we should be doing as Christ followers. We cannot overcome something we deny exists.

Every time an image (or institution or perpetrator) is protected over and above the physical, mental, emotional and spiritual welfare of children, there are wrong values and priorities underlying those actions. I don't care if it's a church, a university, an organization or just a family. Any time what matters most is an image or a reputation or the preservation of a group, the values and priorities of HEARTS are wrong. And every time a child receives the message that their violation is of less significance than the repercussions of it becoming known, the shame of the abuse is put squarely on the hearts and minds and backs of the victims. And they carry it with them for the rest of their lives. It manifests differently in different victims. Sometimes the wound is obvious in life choices and troubled relationships. Sometimes the person may think they have no lasting effects, but their wounds manifest in physical illness, depression, addictions and eating disorders. There is no such thing as being unaffected.

Yes, I realize God can heal a person completely from the wounds of abuse. But just as we accept that there are consequences resulting from the sins we commit (even though we are forgiven), there are also consequences we suffer as a result of the sins that are committed against us. God will help us to overcome those consequences and He will use every experience for our good. But how many examples can you cite as evidence of God just removing all consequences of sin? It doesn't work that way. We all live with consequences of our own actions AND the actions of others every day of our lives. Some are benign and others are life-altering.

People who cover up abuse re-victimize the victimized. And in many cases, they inflict more emotional damage on the victim than the perpetrator. With the proper response to this crime, a child can recognize that a pedophile is a sick person and they - as victims - bear no shame. But when the reputation of the perpetrator (or the image of an organization) and the embarrassment of family members is the highest priority, the victim feels worthless and ashamed, as if THEY have done wrong and are an embarrassment. In addition to the wounds of the abuse, they feel responsible for what happens to others if the abuse becomes known. And they are made to feel like everyone else in the equation, including people's "reputations," have more value than they have. How in the world could we ever think such a person could come through the experience without shame and a loss of self-worth? How can we be surprised by the scars of abuse? And how can anyone who has ever participated in covering up abuse take a position of moral superiority to the "behavior" of a victim? I just don't get it.

Anyone who has participated in a coverup, or defended someone who has, should feel as appalled at their own actions as they are capable of feeling toward Joe Paterno and any person who protected Penn State rather than a kid being raped in a shower. It does not matter what level of abuse occurred. Coverups are self-preserving and do not protect the innocent. Coverups put the shame on the victim and facilitate repeated abuses of future victims. There is no difference in what has happened at Penn State and what has happened in the Catholic Church and what has happened in the churches I grew up in. And I think this would be an ideal time for some who have chosen the wrong position to repent and make the right choice. Tell a victim you are sorry you did not stand up for them. Validate their suffering. Demonstrate that you care, if you do.

If you chose to protect and preserve an organization, a system, a reputation, or an image above the protection and preservation of a child, a person, a family member, it is never too late to make it right. And it opens the path to healing.

Silence and time alone do not heal anything.

If we truly care about victims, we will stand with them and for them, regardless of what it costs us personally to do so.

“Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.”

~ John Wooden

Doing Better

2011-11-11T19:28:00.000-06:00

I had my second session of physical therapy today. I won't lie. It was rough. But I was able to push myself much further than yesterday. And I smiled right through the pain. No tears!

My therapists seemed happy with my progress so far. I know I am. But I was even happier with my toughness!

I have to go every day next week and do home exercises as well. They want me doing the home exercise five times a day over the weekend so I don't lose any of the ground we've gained. I intend to follow instructions to the letter. I really want to get past this. The sooner, the better.

I am so thankful I'm not facing shoulder surgery.

My Shoulder Saga...

2011-11-10T19:46:00.003-06:00

This has been a tough day, but I think I'm doing a little better tonight.

Last night I made a sudden movement when the phone rang and I was practically on the floor from the pain. It was the worst, sharpest pain I've had yet with my recent shoulder condition. And it really scared me. It felt like I had ripped something wide open. I don't say this lightly (because the worst pain I have ever experienced was childbirth), but that pain was right up there with labor (only it didn't last as long).

For the rest of the night I was literally afraid to move. I soaked in the tub twice because my shoulder pain was not responding to the pain medication. And at bedtime (10:30) I took my usual 5 mg. Lortab along with half a Soma (muscle relaxant). I slept comfortably and did not have to take another pain pill until 3:30. But psychologically I was still feeling a bit 'traumatized' by the severity of that pain the night before. (I hate the drama of that word, but can't think of another one that describes the fear I felt about the possibility of experiencing it again.)

I was stressed to the max about my doctor appt. John asked why I was so nervous. He thought I should be feeling great knowing I was going to get the problem fixed. But all I could think about was that the pain would probably be worse before it was better (if I had to have surgery). I don't have a lot of deep seeded fears, but I do literally fear intense pain and I am very honest about that. I don't pretend to be something I'm not (brave).

Anxiety makes me weepy. So, after weeks of chronic pain, taking anti-inflams, hydrocodone and prednisone, many nights of not sleeping well, capped off by my anticipatory anxiety about the possibility of a painful surgery just ahead, I was not in the best shape emotionally this morning. And when feeling frayed around the edges, it is not unusual for me to start crying (for no apparent reason) in the middle of a sentence. It is SO embarrassing and makes me feel SO fragile. But there is nothing I can do about it. This is who I am. And the harder I try to put on a game face, the more I fall apart. I think it just adds more stress and anxiety when I worry about looking like a baby and trying not to show emotion.

Dr. Elrod said he only had to watch the way I took my sweater off to see the condition I was in. And after a few questions and movements, he told me that it was obvious I had a "horrible" case of frozen shoulder and that the small labral tear would not cause me this much pain or restricted movement. He said I do have some spurs in there, but there isn't a lot to "clean out." The real problem is the frozen shoulder. I laughed when he said, "I'm surprised you can still shave your underarms." I assured him it was no easy task, but a high priority. LOL. Fortunately, I don't have much and it grows slow.

He told me he wanted me to go to physical therapy every day for a while and see if we can get me moving in the right direction. This is not a condition that goes away quickly. It often has to run its course (which I know from previous experience with my right shoulder). But therapy can help move the process along and hopefully give me increased movement. Since I've had PT for frozen shoulder, I knew it was going to be quite painful and it was hard to be as happy as I should have been over not needing immediate surgery because I was focused on the pain of PT.

I so want to be brave and stoic. I can't begin to convey how badly I want to be that instead of what I am (cowardly). But my fear is deep. And I have no poker face. Most of the time I wear a huge smile and am very bubbly. But fear and dread show up just as visibly in my eyes (accompanied by tears).

I took a pain pill, but I was still so nervous when I arrived for PT that I started to cry just talking to the therapist about my pain. I told him my nerves were frayed and I was in a lot of pain and I knew he would have to hurt me to make me better, but he might as well just expect me to be in tears. A second therapist was approaching as I was explaining that I was going to cry and he said, "You're already in tears and we haven't even touched you." During the therapy (which was difficult), I felt so embarrassed about the tears running down my cheeks and said, "Do I now hold the record for the biggest baby you've ever had in here?" He said, "No (pause), but you might take second or third."

That made me laugh. And laughter helps tension. It was said as comic relief, not in a way to make me feel silly. And I am very good at laughing at myself when it's in fun.

They really were very kind, compassionate and gentle. And they assured me they weren't going to laugh at me after I left (yes, they will...how could they not? I was so pitiful.) I'm pretty sure they took it easy on me today. It could have been worse.

I go back for more tomorrow and I don't think I will have the same level of anxiety. I hope I can get through it without tears next time. I will be so proud of myself if I do

I feel like I should sign off on this one with:

Trying hard to be a big girl at fifty-two.
(Failing miserably so far...)

These photos taken through an arthroscope show a normal shoulder joint lining (left) and an inflamed joint lining damaged by frozen shoulder.
http://orthoinfo.aaos.org/topic.cfm?topic=a00071
(Thanks for the link, Kathy!)

What a Weekend! Love My Howertons!

2011-11-08T16:27:00.004-06:00

In June, John's cousin Maria and I began talking about our desire to get the extended Howerton family together for a reunion. It had been many years since all the aunts, uncles and cousins had seen each other. So we chose a weekend we hoped would work for most and created an event page on Facebook to see how many were interested. As it turned out, we selected the very weekend that our nephew Harris Jr. was getting married. So it was perfect for those who were coming from a distance. Wedding Saturday, reunion Sunday.

I didn't even have a sore shoulder when we first started planning this. And I had no idea what shape I would be in by November. But after being in constant pain for weeks, I was feeling a bit weepy and depressed. I had looked forward to this weekend so much and now it seemed that I might not be able to enjoy it at all (which was also depressing). John was worried about me and asked if I thought I was up to the trip. He assured me everyone would understand if we couldn't make it. But I told him there was no way I was going to miss the wedding OR the reunion. It was too important to me. Besides, it was not like I would feel any better if I stayed home. If anything, I would feel worse.

Finally, a good friend (and RN) gave me a major pep talk on Facebook about the necessity of taking my pain medication regularly. She assertively urged me to take it on a schedule so I could get ahead of the pain (instead of sparingly, as I was foolishly trying to take it) and explained to me that the emotional stress of chronic pain was adding to the inflammation in my shoulder and making the pain worse. Everything she said made sense. And I was feeling pretty desperate. So on Friday I took her advice and started taking pain meds every 5-6 hours, in addition to a short course of low dose prednisone I had started Tuesday, plus increasing my anti-inflammatory to twice a day. All of that worked and, as you can see from the pictures, I was comfortable enough to thoroughly enjoy the big weekend. (Today I have had a little more pain again. Probably because I'm at the weaning off point in my prednisone and maybe a little from so much hugging! But it is still manageable and under control.)

I'm so glad I was able to be in Evansville this weekend. I love John's family. From the first introduction, I have always felt so at home with all of them. And I love, love, love all of my Howerton nieces and nephews so much.

Every family on Earth has its dysfunction, its relational issues and problems. And the Howertons are no exception. But there is always love, camaraderie and so much laughter when we're together. This is a family that loves to clown around, laugh, imitate, and make faces endlessly. And I always enjoy their company. There are no hoops to jump through. No molds to fit into. They make me feel like they wouldn't change a thing about me even if they could. But the truth is, they are a loud and lively crowd where I fit in perfectly and effortlessly just the way I am. And that makes me feel so at ease.

I have over a hundred pictures from this weekend and I posted all of them on Facebook. But I wanted to publish a few of my favorites here, along with my reflections on the weekend and being a part of this fun family.

This is the happy couple (Harris Jr. and Bridgette) with Harris Sr. and Connie...

Marian and Bridgette...

Lu Anne, Ashleigh, Taylor and Jeff (John's brother)...

John and Me with nephew Robb and niece Phoebe (Lillian's son and daughter)...

The brothers carrying on the tradition of trying to be the tallest in the picture by standing on tip-toe (all except Rob who just stands there and IS the tallest brother!)...

My husband and the amazing woman who raised all of these boys. I tell her I will be forever in her debt for bringing my prince charming into the world!

Robb, Marian (Jeff in the background), Phoebe and Me...

John and Robb...

Phoebe and "Oma" (Grandma in German)...

Annie, Mike, Phoebe and Maria...

The artists, Maria and Robb...

Darling Phoebe and Me in mid-conversation...

Marian and Aunt Margaret (John's late father's sister)...

John and Me with Cousin Maria...

Taylor, Marian, Me, Maria, John, Jeff, Rob...

Uncle/Dr. Vic and Aunt Margaret Viray with daughters Annie and Maria...

My oldest nephew Robb, whom I adore...

Beautiful niece, Taylor with her dad Jeff...

A great picture of Jeff and Rob...

John and Uncle Vic...

My oh-so-vibrant and adorable niece, Ashleigh (with new hair color)...

Cute group pic...

Cousin Annie and me...

The guys as we were leaving (John, Mike, Jeff and Rob)...

One of our many group photographs...

A few of us were missing from this gathering and hopefully we will be able to schedule another one before too much time passes. For those of us who were able to make it, the day was memorable! And I feel like I've known my new cousins-in-law all my life!

Bonhoeffer and Suffering

2011-11-03T22:14:00.003-05:00

I finished reading Bonhoeffer (Pastor, Martyr, Prophet, Spy) by Eric Metaxas today.

This was the perfect book for me to be reading while struggling with chronic pain. It is impossible to feel sorry for yourself -- no matter how bad you feel -- while reading about the horrors of Nazi Germany and those like Bonhoeffer who took a stand against evil at such great personal cost to themselves.

Dietrich Bonhoeffer was a man of deep spiritual conviction who did not fear suffering or death. He regarded it as a duty, a privilege and an honor to suffer with those who suffered. He believed that a church that did not stand with the Jews was not the church of Jesus Christ. And he saw the evil that was fast approaching the nation while most around him were being taken in and manipulated by Hitler. It was almost eerie to read of the economic climate and the events that set the stage for the rise of Adolf Hitler to power. There are many parallels to our world today. The people of Germany were looking for a political savior.

Toward the end of the book, as he was about to be executed just weeks before the end of WWII, I was moved to tears by Bonhoeffer's faith and the peace with which he faced death. Because of this beautifully written biography, I felt almost as if I knew him.

There were quotes all through the book that I wanted to share. But two passages especially impacted me:

[Some] people neither steal, nor murder, nor commit adultery, but do good according to their abilities. But . . . they must close their eyes and ears to the injustice around them. Only at the cost of self-deception can they keep their private blamelessness clean from the stains of responsible action in the world. In all that they do, what they fail to do will not let them rest. They will either be destroyed by this unrest, or they will become the most hypocritical of all Pharisees.

And from the chapter, On the Road to Freedom:

No one has yet believed in God and the kingdom of God, no one has yet heard about the realm of the resurrected, and not been homesick from that hour, waiting and looking forward joyfully to being released from bodily existence.

Whether we are young or old makes no difference. What are thirty or fifty years in the sight of God? And which of us knows how near he or she may already be to the goal? That life only really begins when it ends here on earth, that all that is here is only the prologue before the curtain goes up -- that is for young and old alike to think about. Why are we so afraid when we think about death? . . . Death is only dreadful for those who live in dread and fear of it. Death is not wild and terrible, if only we can be still and hold fast to God's Word. Death is not bitter, if we have not become bitter ourselves. Death is grace, the greatest gift of grace that God gives to people who believe in him. Death is mild, death is sweet and gentle; it beckons to us with heavenly power, if only we realize that it is the gateway to our homeland, the tabernacle of joy, the everlasting kingdom of peace.

How do we know that dying is so dreadful? Who knows whether, in our human fear and anguish we are only shivering and shuddering at the most glorious, heavenly, blessed event in the world?

Death is hell and night and cold, if it is not transformed by our faith. But that is just what is so marvelous, that we can transform death.

Those words were taken from a sermon Bonhoeffer preached while a pastor in London. The author explained that "Even if millions have seen Bonhoeffer's death as tragic and as a prematurely ended life, we can be certain that he did not see it that way at all."

The camp doctor at Flossenburg wrote of Bonhoeffer's execution, ". . . In the almost fifty years that I worked as a doctor, I have hardly ever seen a man die so entirely submissive to the will of God."

~~~

I have been struggling lately with physical pain (a drop in the bucket compared to what some people suffer on a daily basis, I'm quite sure). I don't feel sorry for myself or wonder "why me?" when facing challenges. I never feel like God is punishing me. And I always know that He has the power to completely heal me and end my pain at any moment. But sometimes He allows us to suffer instead. And I believe that if He does, there is a purpose. God is fully aware that I would be happy and thankful to have my pain come to an abrupt end. At the same time, I know I become more sensitive to the pain of others, more compassionate, and better equipped to pray and comfort someone else because of personal experience with suffering. So my prayer has been for healing if that is God's will, but grace and strength to endure whatever He allows me to suffer.

I have been hurting badly all this week. I've whined a bit. And I've been a little down emotionally. But reading this book kept me from throwing a pity party for myself in my head. I am so blessed that I can crawl into a big bathtub and soak my shoulder in soothing hot water. I can rest all day if I need to. I have friends who care, who encourage and pray for me. I have a compassionate husband who takes care of me. I have access to pain medication and good doctors. I have a very comfortable bed to sleep in, or to toss and turn all night in if that is my lot.

I started this day out feeling terrible. I soaked in the tub for over an hour and got some relief. But when I got out, the pain started up again. I texted my doctor and asked if I could try a muscle relaxer or something for nerve pain (because the radiating pain hurts in many places other than my shoulder). John picked up two prescriptions for me and had them filled. But shortly after several friends mentioned (on FB) that they were praying for my pain, I noticed that my pain had subsided significantly. And I hadn't taken anything. I was just tolerating it.

I've had only a few radiating pains all evening. And my shoulder is not aching right now as long as I don't try to move it in certain ways. It has been hurting ALL the time lately. I don't know if God will heal my shoulder or if He is just giving me a reprieve. But even if He allows it to return, I am so thankful for the relief I've had for the past several hours.

I started reading online about the two prescriptions I asked for. And after reading about potential side effects, I am feeling apprehensive about taking either one of them. I am not one to pop pills easily. I have decided that since I am not in pain right now, I am going to take nothing, go to bed, and see what happens. Maybe someone is still praying for me.

Hurting Shoulder / Thankful Heart

2011-10-30T14:17:00.007-05:00

I have not been blogging as much lately and I miss it. There have been so many things I've wanted to write about (including things I am learning from this experience). However, my chronic shoulder pain has taken a toll on me, mentally as well as physically. I don't have my normal enthusiasm for even the activities I enjoy because I'm hurting most of the time. Now and then I cry for no reason. And I'm not crying from the physical pain (even though the pain may be more severe in those moments). I cry because I'm so emotionally tired of feeling bad.

I'm having a lot of nerve pain in the left side of my body, in addition to my shoulder pain. It's mostly in different parts of my arm and hand. But sometimes I have sharp twinges in my neck, shoulder blade and hip (sciatic nerve). It's all on the same side, so I assume it's all related. The pain is not excruciating, just constant. And it wears on me. But I remind myself frequently that I would choose this pain over so many other afflictions I could be dealing with. I don't feel sorry for myself. I feel blessed to have endured so little physical pain and to enjoy such overall good health for someone my age. But I'm also not one to pretend I'm fine when I'm not.

I have such admiration for people who push through their pain and so effectively rise above it with a smile and an upbeat attitude, saying "Good!" when asked, "How are you?" But that's not me. And maybe that's another reason I have avoided writing on my blog recently. I don't want to whine incessantly about how bad I feel. (And yet that is exactly what I seem to be doing right now!)

I'm thankful for the days when my pain is dull and the nights when, for some reason, I sleep through it and wake up more refreshed. But I don't seem to have those days or nights in succession. I've gotten my hopes up several times that maybe I'm starting to spontaneously heal simply because I had a good day or slept better. And then the next day or night is especially rough. I know I do things to aggravate the pain unintentionally. There are so many movements we make without thinking. They are just automatic reflexive responses. Especially when it comes to our arms. I prop my arm up on a pillow at night to take the pressure off my shoulder joint. And a couple of nights ago the pillow started to fall off the bed. Instinctively (not even fully awake), I tried to catch it with a quick arm movement and it felt like I was being stabbed with a knife for several minutes. The following day I felt the painful consequences of that involuntary movement all day long. (I also do intentional things like picking up my 18-month-old grandson because I can't resist him when he reaches for me.) On the other hand, I can't explain the days I have when the pain is so dull that I don't need heat or pain medication. But I sure am thankful for them.

I was fortunate to be able to spend last week at the beach with one of my dearest girlfriends, Cindy Robbins. We go way back and we have the kind of friendship that time and physical distance have no bearing on. Although we hadn't seen each other in several years, from the moment she arrived, it felt as if no time had passed. Our relationship is always the same; warm, natural and uncomplicated. Cindy is thougtful and considerate (almost to a fault). We have different temperaments and personalities, but we are really comfortable with each other. And while we look at so many things differently and often hold different opinions, we can talk freely about anything. If our friendship was based on seeing eye to eye or having the exact same interests, we would not be friends. But instead, our friendship is based on mutual respect and love. Our hearts are deeply bonded and we have shared values. Because of that, I think our differences may even enhance our friendship. I believe we gain insight and learn from each other because we do look at life differently. I also just enjoy being with her because she is special to me and I love her so much.

In spite of the continuing pain, this has been a rejuvenating week enjoying my friend, leisurely mornings in the condo, relaxing afternoons in our beach chairs, delicious food, meaningful conversation, reading, and spending time with Danny, Rebecca and the boys (who were just down the road in Seagrove). There is something so soothing about the beach. The warm sunshine, the sand and the waves did provide a bit of mental relief and helped to distract me from focusing entirely on my physical discomfort.

My pain is worse today, but I'm hoping it's just from being in the car all day yesterday. I see Dr. Elrod a week from Thursday. At first I was dreading surgery. And I still can't say I'm looking forward to it. But I'm ready. I'm so tired of hearing myself whine (even in my own head)!

We have a special weekend coming up. A family wedding followed by a Howerton Cousin Reunion! I have been looking forward to it so much and I want to be able to enjoy it. But I told John this morning that I doubt I will be bugging him to dance with me at this reception! : )

MRI Results

2011-10-21T20:26:00.001-05:00

I had an MRI this morning and got the results this evening. Mike read the whole report to me over the phone and I can't remember all of the terminology. But the main problems causing pain, inflammation and impingement are a small spur and a glenoid labrum tear (which is a joint tear, not a tendon tear). I also have some tendinitis and arthritis in my shoulder. I will have to see an orthopedic surgeon to confirm the radiologist's conclusions and know for sure, but it sounds like I will need arthroscopic surgery to fix this.

I am so used to thinking of myself as a baby when it comes to pain that I was almost certain the MRI would indicate nothing more than tendinitis. I told John the good news is that perhaps I'm not such a big baby after all because something is really wrong with my shoulder (more than inflammation). Of course, the bad news is ... there's something really wrong with my shoulder.

Just Checking In (Random Stuff) ...

2011-10-20T22:32:00.000-05:00

I am happy to share that Marian is doing as well as John on CAL-101. It has been a year since she began treatment. Her blood, marrow and lymph nodes have all responded beautifully. On the left are her counts today. She says she feels good and she is back on the dance floor. She's pretty amazing for 79 ... or any age, for that matter. I think sometimes she feels younger than I do. : ) Especially lately ...

I am having an MRI of my left shoulder in the morning to make sure I don't have a tear in my rotator cuff. It is probably just tendinitis and/or frozen shoulder (which I previously had in my right shoulder about ten years ago). But the pain has been pretty constant for about three months. I've thought it was getting better once or twice (when the pain eased up for a day or I was able to painfully push past a certain range of movement). But then it seems to get worse again for no apparent reason. And lately I have been having a hard time sleeping; waking up with that deep aching that varies in intensity, but never completely goes away.

I've been taking an anti-inflammatory and doing self-PT exercises for weeks. I've had a cortisone injection. I've had acupuncture, a chiropractic adjustment and ultrasound. Once we get the MRI results, I will probably be sent for physical therapy. But when I had this before, it took almost a year to heal (even with PT and two injections). And I'm ten years older now.

There have been a lot of nights lately when I have woken up almost every hour, all night long. When I wake up, my shoulder is killing me and I am also really hot. My hot flashes, which were so mild and tolerable when they first began, have built up a little more steam. So I never really know if it's the hot flashes that are waking me up or the pain in my shoulder. All I know is they are both present any time I am conscious during the night. And they are both making me feel old!

I read recently that pain is a reminder we are still alive (as we get older). And I am thankful I'm still alive. But I find myself wondering frequently what it's going to feel like to be old (supposing I stick around that long). I also realize how fortunate I have been to enjoy good health into my fifties and to have endured so little physical pain over half a decade.

We went to see close friends (Michael and Norma Geiser) in New England last weekend. We flew into Providence, RI and stayed with them in Pawtucket from Thursday through Sunday. We spent Friday in Newport, RI, and Saturday in Boston, MA. We walked and stood a lot (sightseeing). And we were all hurting. Aching feet. Aching backs. Aching shoulder. (My knees are not bothering me at all right now because I'm taking an anti-inflammatory every morning for my shoulder.) Fortunately, we are all in the same boat. So we were sensitive to each other's aches and pains. And we had plenty of laughs about our aging bodies.

One thing I know: There is definitely something to the theory of endorphins relieving pain. More than once I noticed a complete absence of pain while we were enjoying a fabulous meal. Actually, I didn't think about pain or not being in pain until the pain returned. At that point, I realized I had not felt any pain all through dinner (or lunch at Quincy Market). But one cannot be on a continual feast -- even if there are therapeutic benefits from surges of endorphins!

Here are a few pictures of me feeling no pain ...

We had a great time with two of our best friends in the world, Michael and Norma (aka: Mikey & Nawmin).

Yahoo Instant Messenger

2011-10-16T21:28:00.000-05:00

I was away from my computer, exercising, tonight and when I came back I noticed I had an instant message from someone asking me a CLL/CAL-101-related question. I wanted to respond, but the message was sent over an hour before I saw it and the person was no longer online.

If I don't respond to an instant message, please email me at ShariLHowerton@aol.com or leave a comment I can respond to on my blog (in the event I do not respond to an instant message). I hope to answer your question but have no contact information.

CAL-101 Update: John (Completion of 18th Cycle)

2011-10-11T21:54:00.000-05:00

WBC: 5.81
NEU: 3.70
ALC: 1.56
RBC: 4.28
HGB: 14.4
HCT: 40.2
PLT: 221

For those who don't carry around the "normal" numbers in their heads, John's counts are great.

Going into his 19th 28-day cycle of CAL-101, he is continuing to get good results on the lowest dose given (50 mg. twice daily).

Nodes still under control. Blood counts normal. No symptoms other than off and on fatigue. No infections. No side effects. Happy, thankful wife.

John has been on CAL-101 since May 27, 2010.

Something to Remember

2011-10-11T09:05:00.000-05:00

The Scars of Abuse

2011-10-09T14:30:00.004-05:00

Even when wounds heal, they often leave a scar.

This morning I was searching old files for something specific and stumbled onto an old file I thought had been deleted years ago. I read it and was amazed at the degree of emotion that was triggered simply by remembering specific past abuses. The emotion isn't anger or resentment. In fact, I'm not sure I could even define it for someone who has never suffered abuse. It's more like a post traumatic stress experience. For a few moments -- maybe even an hour or so -- your emotions travel back in time. And it's as if the event happened yesterday. My heart rate goes up. I have anxiety. It's like a tidal wave.

Many times I have shared just one story or example of past abuse with someone (usually to let them know I understand how they feel) and have not been able to get it all out without breaking down. Someone who has never suffered emotional and psychological abuse may not be able to understand or relate. It's as if you relive the experience every time you revisit it. But one of the rewards of having experienced abuse is the ability to connect with, relate to and hopefully help other victims of abuse. So never revisiting or reflecting on the past is not a realistic option. This is one of the reasons I do not believe that you haven't forgiven if you haven't forgotten. I see no value in forgetting. You're able to empathize with another hurting person because you do remember the pain. That's not the same thing as constantly dwelling on it and perpetually feeling like a victim, harboring resentment.

I have a portable hard drive where I've saved the content of numerous old hard drives every time I've gotten a new computer. I used to have all kinds of documentation saved from my past. I had always saved things in files, as my own personal (dated) validation/evidence of the abuse I lived in for so many years. It consisted of personal journal writing, emails I had written detailing specific incidents to a friend and making pitiful pleas to the abusing party to treat me differently, as well as writing I had done for counseling detailing specific examples of my abuse and the ways I was coping with it.

For instance, my counselor asked me in 1999 to put in writing all the ways I was abused and what it would take for me to return to my previous marriage after a six week separation. I had left that time because I had been struck in the face and I was seriously considering not going back. For many reasons, I was the most afraid I had ever been for my safety at that point. And I was very low emotionally. But I was feeling a lot of pressure to stay in the marriage and I agreed to at least consider another attempt at reconciliation. Counseling was a part of that.

In the first joint counseling session after the physical abuse and separation, I had been asked by my counselor to read out loud the 14 page "letter" I had typed out (single spaced) giving examples of abuse and what it would take for me to consider trying again. When I was asked to put it all in writing, I had no idea it would wind up being 14 pages long. But I was asked for details and specifics. And there had been so much fresh abuse. I didn't struggle to give examples.

I remember crying and trembling as I read it out loud to the abusing partner in the presence of the counselor. I expected denial and anger in response. And I was shocked when the abusing partner acknowledged to the counselor that it was all true, every word. I remember him saying it was typical "_______ behavior." He said he heard and saw himself that day and felt disgusted. He swore he would change and he would keep the fourteen typed pages forever as a reminder of how he never wanted to treat me again. I was sufficiently touched and impressed with that response to go back shortly thereafter. And, of course, there were many more disappointments and further abuses until I finally left and filed for divorce in 2002. (One day after I returned I found the 14 pages torn into tiny pieces, spilling out of a trash bag. It hit me like a ton of bricks. I knew it was left that way intentionally, as a statement.)

I am an extremely trusting and believing person. If you tell me you're truly sorry and will not hurt me again, I will believe you every time. People have always asked me, "Why did you stay?" Well, I believed this person every time he made promises to change for 27 years ... until I finally lost all hope and completely shut down emotionally.

I learned later in college courses and in counseling training that this is a cycle of domestic abuse and it has a name. It's referred to as the honeymoon phase. You're being promised everything you have always hoped for. And the reason it's considered a form of abuse is that you're being set up to hope for something that isn't going to happen. You're going to have your hopes raised really high, only to have the rug pulled out from under you again. And this can go on for many years; especially in a situation where someone is very forgiving, long suffering, committed to the marriage and endlessly hopeful that change can occur. My coping style (focus on the positives, rise above the negatives, lower expectations, make the best of everything) was a huge contributing factor to being caught in this cycle for so very long.

There were several apologies and acknowledgments of the truth in more recent years. But in between apologies, there was also denial. Most abusers struggle with an inability to face their inadequacies and a fear of vulnerability. They constantly guard against being vulnerable to others. So even though an apology can be very sincere in the moment, the vulnerability felt as a consequence of that humility results in the return of false pride and a denial of the truth they can't face about themselves (because it reminds them they are inadequate and flawed, which makes them feel weak). Anger is the emotion of choice because it is empowering.

I kept all of my "documentation" for years, even after I was remarried. For some reason, I could not delete anything for the longest time. I think I wanted to be able to remind myself (as if I might forget) how hard I tried and how bad it was.

I also thought I might one day write a novel (a true story concealed as nameless fiction). And if I ever did, all of those files might come in handy. But when John and I moved into a new house in 2007, I had to make a decision about the printed documents. Did I really want to keep them and move them into our new home? Or did I want to make a clean break with the past? I had a new life. It seemed healthier to throw it all in the trash and move on. Put it completely behind me. So I did. And I deleted many computer files at that same time. But every once in a while, while searching for something, I find a file I missed (like I did today). And I have to "decide" to hit delete again.

But before I do, there is usually an impulse to share it with someone and say, "This is how I lived. You have no idea what it was like." Why I still have that impulse I don't fully understand. Once the impulse passes, I realize that I do not have anything to prove to anyone. Especially now.

Even though I occasionally still entertain the thought, I know I will never write that novel. I have no desire to dig up the memories and relive the trauma. But I will always remember well enough to connect with other abuse victims and feel their pain. And that is something I would not want to change.

After writing all of this, I wondered if I should post it or just delete it. But sometimes the posts I think no one is going to benefit from wind up being the ones people tell me they appreciate most. I lived so many years believing I did not have choices. Now I know I did. The choices I finally made nine years ago were choices I could have made at any time. But I did not believe I had choices and I was immobilized by fear.

If it has ever taken you a long time to realize you had choices, don't waste time beating yourself up over that. Just be thankful you realized it at all. Some people never do.

One of my favorite lyrics from "Already Gone" (Eagles) ...

So often times it happens that we live our lives in chains,
and we never even know we have the key.

The Rest of the Story...

2011-10-08T11:13:00.005-05:00

By now, all of my friends have noticed how frequently I've been going to Panama City Beach. But I haven't openly shared why (other than my web writing for www.visitpcb.com). John is much more private than I am and he at first requested that we keep it to ourselves (for reasons I will explain further down). But the request has been lifted and he told me last night that he doesn't care who knows. Which is such a relief to me because I have a VERY hard time being mysterious and vague with friends! It just isn't me!

John has always wanted to own a condo at the beach and we've been looking at property in the Destin area for years. I was always a bit ho-hum about the idea. I didn't really understand why it appealed to him so much to own something. (The thought of owning a beach condo someday never once crossed my mind in my whole entire life!) I definitely did not have the bug. But I'd always ride around with him and look because he did. (Sometimes I would think to myself that maybe if we just went ahead and bought something, we would be able to stop looking. Ha!)

This last New Year's Eve, we were invited to spend a few days in PCB with our close friends Ricky and Karen Jones. They own and operate Resort Condo Services (www.visitpcb.com). And I fell in love with Panama City Beach, FL. For many reasons, PCB appealed to me more than Destin. And I started to warm up to the idea of actually buying something. Of course, having good friends in the rental/property management business enhanced the appeal. I liked the idea of being able to have a more personal relationship with the people who would be overseeing the rental and caring for our potential investment. The thought of dealing with some huge impersonal management company was far less appealing. And I liked the personal touch service RCS was able to provide to their guests as well as their private owners.

Although it would be nice to have a condo that no one ever stayed in but ourselves and our family, that is a luxury we cannot afford at this time. We need to cover our expenses, which are substantial! But it is at first a bit hard to think of "strangers" staying in your precious "home away from home" and perhaps not caring for it the way you would. You have to get past that, of course, because it's a business investment. But there is still that apprehension. And our relationship with Ricky and Karen has been a big help. They have owned and managed condos in PCB for a while. They know the area and the business well. They have developed a lot of contacts and have hands on experience to share with us. And most importantly they genuinely care about our investment and how the condo is treated by guests.

Because of the economy, we recognized that this was the ideal time to act and that this window of opportunity would not last forever. So we took the leap and bought our first condo in March! It has stayed rented almost continuously (except for the weeks I have blocked out for personal use). And it's been such a positive experience that we bought a second condo on the same floor when a foreclosure became available over the summer. The first condo was completely furnished and we stayed in it immediately upon closing. But the second condo was a clean slate. Even the appliances had all been removed. It needed paint, carpet, drapes and furnishings ... lots of work. We wanted to have it rental ready as soon as possible, but we also wanted do as much of the work ourselves as we could. And we are a few hundred miles away.

So that's why John and I were in PCB for eight days a few weeks ago. We weren't just having fun. We were working very hard at redoing the new condo. I only got to spend three hours in my beach chair that trip ("Poor Little You!" as John says). I spent far more time in Home Depot, Lowe's, furniture stores and in the condo (waiting for deliveries and being John's helper with such tasks as mounting the microwave over the stove).

And that was also the main reason for my trip this past week. I wanted to be there when the drapes were hung. And I took my friend Robin with me to help me place wall hangings and other finishing touches. (Robin used to live on South Padre Island and had recently given me some tropical items she wasn't using anymore. I was excited about using them in the new condo and thought it would be entirely appropriate that she be with me to see her belongings placed in their new home.)

As it turned out, I don't know what I would have done without my dear friend this week! (I actually thought I could do it by myself if I had to. And that would not have been possible.) She was much more than a help. I couldn't have accomplished my tasks without her (especially with my shoulder impingement). Not to mention, her presence kept me from being completely overwhelmed more than once. We ran into a few snags (like not being able to drill into concrete walls even with masonry drill bits). Fortunately, with the help of Ricky and Karen, we were blessed with the services of a special angel who had the right equipment and showed up to save the day. (Karen, please tell your dad that I called him an angel!) By Thursday afternoon at 1:00, we had every wall hanging in place and were able to enjoy total relaxation in our beach chairs for the rest of the day.

I am so pleased with the finished product and so happy that I can talk about what I've been doing. I told John last night that I'm just sure all my friends think I have turned into a beach bum this year, and that I wish I could just be out in the open about our new ventures. And that was when he said, "Oh, I don't care. You can tell anybody you want, as long as you make it clear we are committed to a rental program and it's not available to loan out." (He thinks it's hilarious that I always feel the need to explain myself, including why I've been to the beach so much lately.)

One of our mutual concerns was that we would possibly hurt feelings of friends and/or family by not offering it freely. And that was a part of our initial "confidentiality" pact. I love to share my blessings. Not that John doesn't. He is one of the most generous people I've ever known. But he is able to be unemotional about business decisions. I have such a hard time separating my personal feelings from the business aspect of this (or any) endeavor. And John knows this.

However, if you are interested, please feel free to contact Resort Condo Services! They handle all of our bookings at Emerald Beach Resort. Both condos are one bedroom + hall bunks w/two full baths, facing the Gulf and just six doors apart on the same floor (in case you are traveling with another couple or small family and want to be separate but close). Pictures of the first unit are already available on the website and the second one should be uploaded soon. In the meantime, here are some pictures I took with my own camera. I am so proud of our hard work!

By the way, John's new favorite impersonation of me is:

"Why do you want to buy a condo at the beach?"

For me, that cross and sign above (in the master bath) is what marks the condo as "ours." John and I waited a long time to find each other and be this happy. We met in our forties after our own individual long and broken roads. I didn't know I would ever have a happily ever after. But I have felt like Cinderella almost from the day I met him.

Even at the risk of injury, I'll choose tender over tough!

2011-10-01T08:56:00.002-05:00

I saw this on Facebook this morning.

My first reaction to it was, "Yeah."

Then I read it again and thought, "No."

I agree that I cannot keep carving out space in my day to day life for people who make no effort to be in it. But kick them out of my heart? No way.

I may try to put someone out of my thoughts at times, which is easier said than done;
stop reserving so much space in my HEAD for trying to figure out why someone doesn't make any effort.
But my heart is another matter. I don't kick people out of their space in my heart.

Soft hearts have broken places in them that sometimes hurt.
Trying to develop a heart with no empty, achy spots is not a good solution.
In fact, it sounds to me like the beginnings of a hard heart.
Something I never want.

But I do intend to fill my LIFE with people who at least show some interest in being part of it!

"If you board the wrong train, it is no use running along the corridor in the opposite direction." ~ Dietrich Bonhoeffer

2011-09-29T09:51:00.002-05:00

I have been busy, overly tired, and dealing with chronic pain in recent weeks. My pain is certainly not severe compared to what a lot of people deal with on a daily basis. But any kind of chronic pain interferes with your normal activities and wears on you at times emotionally. I normally enjoy writing on my blog. But I have been lethargic even when it comes to writing. I still have several website reviews to write from my last trip, but I haven't even felt like writing about food! And when I don't feel like writing a restaurant review, you know something is wrong with me.

Yesterday I woke up in more pain than usual because I had moved wrong in my sleep, causing sharp pain and waking me up at 3:00 a.m. The pain kept me awake for quite a while and left me with a deeper ache all morning. I'm also hormonal. The hot flashes have returned with a little more edge to them. And yesterday I felt like it wouldn't take much to trigger tears. I didn't feel like leaving the house. (I'm a wimp.) I considered getting in my tub of hot water and just staying there instead of going to my Wednesday morning Bible study. But I really didn't want to miss or be so self-indulgent. And studying Revelation with Beth Moore in combination with the book I'm currently reading, Bonhoeffer, made it impossible for me to justify coddling myself. So in spite of feeling lousy, I went. It was well worth the effort.

Last week, one of our study questions was to name ways we sense a psychological dimension to the persecution Christians are beginning to face in our current Western culture. We talked about how the pressure to be politically correct, "tolerant" of everything, and not take a stand against anything controversial causes us to question voicing our convictions. Am I not being a nice person to speak my convictions if someone disagrees with me? Should I be silent and keep my convictions to myself so as not to offend others?

For any of us who genuinely wish not to offend others, this is challenging. It's easier to be silent than to speak in some situations. But if you always make it a practice to go with the flow -- and be liked -- rather than face unwanted consequences, you will wind up compromising in ways you shouldn't just to keep from rocking your own boat. It is incredibly self-serving and not the kind of person I aspire to be. One becomes an enabler of wrong by making "not rocking the boat" too high a priority. Believe me, I know a lot about this personally. Hindsight is 20/20. Sometimes you can wait too long to take a decisive stand and then it's too late to reverse the consequences.

You can see the result of this in all aspects of life, big and small. But nowhere in history is it any more obvious to us than 1930s Germany. Metaxas writes of Bonhoeffer, "As would happen so often in the future, he was deeply disappointed in the inability of his fellow Christians to take a definite stand. They always erred on the side of conceding too much, of trying too hard to ingratiate themselves with their opponents. The Bethel Confession had become a magnificent waste of words...."

[Bonhoeffer] had become convinced that a church that was not willing to stand up for the Jews in its midst was not the real church of Jesus Christ. On that, he was quite decided.

He was far ahead of the curve, as usual. Some wondered whether he was just kicking against the goads, but when someone asked Bonhoeffer whether he shouldn't join the German Christians in order to work against them from within, he answered that he couldn't. "If you board the wrong train," he said, "it is no use running along the corridor in the opposite direction."

Reading about the stand Bonhoeffer was willing to take and the consequences he willingly suffered makes any stand I have ever taken seem like standing up to a playground bully in comparison. But you have to start somewhere. If you cannot find it within yourself to take a stand on a playground (metaphorically), there is little chance you will find the courage when real pressure to do the right thing comes.

There are group study questions at the back of my book. I just discovered them this morning. The last question in my current chapter reading is this:

Can you think of other people who could have spoken out against wrongs that were being done -- but didn't? What were the outcomes? Could they have been prevented? Here's one to consider: What if Americans had gone to bat against Madalyn Murray O'Hare when she first began her campaign to remove prayer and Bible reading from public schools. Could the 1962 and 1963 Supreme Court decisions have been nipped in the bud? Could her attempts have been thwarted far in advance of their reaching the Supreme Court? What other rights -- religious or otherwise -- have been lost to citizens' unwillingness to get involved?

No one else in my study group is reading Bonhoeffer but me. However, one of the questions posed in group discussion yesterday was, "Are we (Christians) to blame in some ways for the current climate in our society? If we had said more, might things be different today?"

One of the earliest ways the German people of the 1930s went off track was in looking to the government as savior. It resulted in a nation putting their hope for change in an evil dictator. When they finally realized and experienced the horrible consequences, it was too late.

We can do this with our government. We can even do it with a pastor.

I read Bonhoeffer in awe. He was a special man with a special calling at a very significant time in world history. He was not afraid to suffer. In fact, he considered suffering a part of his call and embraced it. He suffered in ways I can't imagine. I do not like suffering. If you lived with me right now, that would be obvious. I'm a baby. I have not developed the ability to take pain in stride yet. I feel overcome by a little shoulder pain at times. How would I ever endure suffering on a large scale?

Perhaps that is one of the reasons God is not instantly healing my shoulder and taking away the pain ~ as I would love for Him to. He knows I'm learning and growing from it. My growth is more important to God than my comfort.

I have a long way to go. I'm thankful He has never given up on me. I'm no Bonhoeffer and probably never will be. But the only reason my spine is any stronger than it once was is because God has given me opportunities to exercise it. And with His grace I have been willing to try.

Taking a Break

2011-09-22T09:26:00.002-05:00

I am back from eight days at the beach with my husband. While away, I took a break from my blog and even a semi-break from Facebook and email. A total break from the Internet for a whole week would be just short of a miracle in my case.

I was up three pounds yesterday and only up two pounds this morning. Hope to have the other two gone within the week. The strategy that has worked for me for years is to keep added pounds as visitors rather than residents. The longer you let a few pounds stay, the harder they are to get rid of.

I also took a whole week's break from working out last week! I never take a break from exercise. I exercise five to six days a week every week, even when on vacation. But I have been in pain with tendonitis of my rotator cuff for several weeks and chronic pain helped me opt out during my week at the beach. "They say" it's good to sometimes take a break from your workouts and let your body rest. So maybe it was not a bad idea.

I've decided to have my shoulder injected with cortisone. I thought it was getting better one morning (after I managed to sleep on my back all night) but that was a temporary improvement, I guess -- in spite of the anti-inflammatory and ice and PT exercises I'm doing. I don't want to tempt God to further afflict me (because I really hate pain), but I must say that, even in the midst of it, I recognize how beneficial it is for me to personally experience it. When I wake up in the middle of the night hurting, my mind immediately goes to others whom I know are suffering much greater pain than I am (with less complaining). And I have thought about and prayed for others more as a result of my "pain reminder."

My mother-in-law has been suffering with the same shoulder pain in BOTH her shoulders for months. I knew the pain because I had tendonitis of the rotator cuff in my right arm years ago. But now that I am experiencing it again in my left shoulder, it's refreshing my memory of how unpleasant and annoying chronic pain is and how bad it can make you feel. Prior to my refreshed memory, I have reminded Marian she is almost 80 when she was trying to figure out what was causing her shoulder pain. But having the pain again myself is bringing me back to the reality that this is not the kind of pain attributable to aging. It is the pinching of an inflamed tendon. I told John this past week that I feel so guilty for not being more sensitive to Marian's pain. Not that I didn't care, but that I didn't SHOW more concern. I should have insisted on taking her to my PA (who is going to give me an injection this week). I should have helped her get to the bottom of the pain rather than being so quick to chalk it up to arthritis or aging. Perhaps God thought I needed to feel this pain again. Seriously. Not as punishment for insensitivity. If that were the case, we would all be afflicted at all times. But just to get me back in touch with someone else's reality. And also to make me more thankful for the lack of physical pain I have endured in my life.

My shoulder is hurting right now and sitting at my laptop is probably not helping. I just wanted to check in after my break. I have several restaurant reviews that need to be written this week from my recent trip to Panama City Beach, as my shoulder permits.

I am reading Bonhoeffer by Eric Metaxas. The book is SO good. Metaxas is a great writer. There have been no slow spots and I'm not even to the most compelling parts of the story. I also began a Beth Moore Bible Study on Revelation yesterday. So I will probably feel compelled to share some thoughts and quotes in the near future.

In a "New York Minute..."

2011-09-11T15:48:00.006-05:00

Everything can change.

I have always loved that song. I remember listening to it on an Eagles CD many times as I drove to and from Lipscomb in 2002-03. It was a pivotol time of transition in my life. Everything was changing. Some things changed over days, weeks and months. Other things, it seemed, changed in New York Minutes. Even though many of the changes were intentional on my part, some were not, and all were painful. I have always feared the unknown and I don't like change. With fear and anxiety, I wondered, "What next?"

Certain songs I listened to during those times trigger visceral memories -- memories that take me back to the emotion as well as the moment. I remember watching the video of Van Halen's "Right Now" on New Year's Eve, 2002. Four agonizing months into my transition, I was beginning to believe I had something to look forward to. I was feeling a bit stronger. But it would be another six months before I could see what God had planned for my life. And in the middle of them, those hard months felt so long. But in hindsight, they have always looked incredibly short. From mid-2003 to mid-2007, I felt like Cinderella at the Ball (as far as my new life with John). But then...

Four years ago this June (2007), I had just finished working out when the phone rang. It was our family friend and primary care doc. Mike was calling me because he had been trying to call John about the results of his recent bloodwork and John -- preoccupied with business concerns -- wasn't returning his calls. Turns out John had gotten the first news of an elevated white count in April after a routine blood test. He had chosen to keep that to himself, wait six weeks and have his blood rechecked before telling anyone (including me). Now the high white count was confirmed as indicating something serious (not just infection in his body) and we needed to consult an oncologist. Mike suspected chronic lymphocytic leukemia.

That was another time when everything changed in a minute. I remember my conversation with Mike and my immediate thoughts afterward. I already knew a little bit about CLL because my dad had been diagnosed with it years earlier. At that time, the doctor had acted like it was a very benign, slow progressing leukemia that was unlikely to ever cause much problem. But if it did "become active" (the doctor's words), there was treatment. I remember him telling us that if you were going to have cancer, this was the best kind to have and that my dad was more likely to die with it than from it. That seemed like a pretty good prognosis and because I had so much confidence in the doctor, I don't remember feeling overly concerned. Of course, my dad also had other, more pressing health concerns that we were focused on.

So, with only the "good cancer" knowledge in my head, my first thoughts were, "Okay. No big deal. Best cancer he could have. Nothing to worry about. John will be just like my dad." (More than ten years after my dad's diagnosis, CLL was the least of his problems and he still has not had treatment for it. But he also has Parkinson's Disease, which has progressed.)

Wanting to know all I could about CLL, I began to read reputable medical resources and patient-driven forums online. I quickly became educated in the knowledge that CLL is not a good cancer (if there is such a thing at all) and that every patient progresses differently. I learned about different prognostic markers and categories of anticipated progression "buckets" that patients were grouped into based on those markers. I started to worry. And cry. And ask, "What next?" John was in his early fifties, which made it seem more of a threat (my dad had been in his early sixties at diagnosis).

As I began to read about medians of survival and aggressive CLL vs. indolent CLL, I became gripped by paralyzing fear. I can't remember exactly how long it took me to stop crying on a daily basis. It felt like months, but I know it was more like weeks. Because I remember when I started to feel my legs underneath me again. It was after a conversation with God on my back porch one day. I was watering my flowers, crying, and begging God to let John have all "good markers" so I could stop worrying about his CLL being the aggressive kind. My thoughts during that emotional time were pretty much this: "I can't lose him. I can't lose him. I can't lose him. God, I can't lose him, You just gave him to me. I can't lose him..." And then that day on the porch, God spoke back (not audibly, but unmistakably). He told me He did not want me to put my faith or trust in the markers, but to put my faith and trust in Him and in His promise that He was working all things for our good ... EVEN THIS. I knew those words did not come from my mind or heart because my mind and heart were gripped by fear. That moment on my back porch is a more powerful memory today than any other moment of our CLL journey.

Our life is different since that diagnosis. There are regular doctor visits. John has had to endure a lot of needles. He went through chemo that didn't work. And there have been some pretty rough days. But soon after failing FCR, he qualified for a clinical trial with a drug in development called CAL-101. He takes a pill morning and night, the lowest possible dose. And it's worked beautifully to control his CLL ever since. Only God knows if it will work indefinitely or reach an ineffective point when something else is needed. But only God knew that CAL-101 would work when chemo didn't. That's why He told me on my back porch to put my trust in His promise. I couldn't have known that anything good could come from John failing chemotherapy. But it did.

When we don't know what's next, we can trust that God does. He is in control. That does not mean bad things won't happen or that we won't suffer. It means that whatever is part of His plan -- good AND bad -- is for the ultimate good of those who love Him. We may not always know what, but we can be assured that good will come from everything we suffer. That knowledge brings peace.

Ten years ago I was in the classroom (Mass Comm) of a local community college (Vol State) when a student walked in the room (late) and told the professor, "A plane just flew into the World Trade Center." At first, it sounded like an accident. But then we quickly learned there was a second plane, hitting the second tower. I remember the stunned disbelief and the fear of "What next?"

That moment is frozen in time. I don't remember anyone's face from that classroom. I just remember the words and feelings. I remember the professor sending a student downstairs to watch for information coming across the AP wire in our building. When he'd come back telling us that the Pentagon was also struck by a plane, my thoughts and fears turned to a full blown war breaking out on U.S. soil.

My next class was canceled, but the one after that hadn't been. So I sat in my car with the radio on. I called my sister-in-law to ask if she was watching. We were talking on the phone as she watched the first tower fall. She told me I would not believe the images when I saw them. I can't remember if I went to my other classes that day or if they were also canceled. The memory stops with me in my car, talking to Cheryl and listening to the breaking news. The next memory is from later in the day, being glued to the television, watching news coverage and videotape of the tragic events over and over ... thinking nothing would ever be the same.

Things are not the same.

I don't need to list the ways our lives have changed since that "New York Minute" -- and all the minutes that followed -- on 9/11/01. For most of us, that day marked a national tragedy and a national change. For those who lost a family member or friend, however, that day is both national and extremely personal; public and very private. The personal loss is, I'm sure, the worst.

Life not only CAN change in a New York Minute, life DOES change in instantaneous moments for all of us. The people who went to work in the Twin Towers and the Pentagon or boarded airplanes on 9/11 had no idea that would be their last day on Earth. But neither did all the people who died in some other tragic circumstance. A lot of people also received an unwanted diagnosis that day ... and every other day of every year. Those New York Minutes don't make the news, but they change each of our lives in an instant just the same.

We have to live in the present moment. We can't allow ourselves to be paralyzed by fear, whether the fear is another terrorist attack or an unwanted diagnosis or the progression of cancer. We can't put our trust in the government to protect us or a war to avenge us.

There is only one hope. His name is Jesus. And He is the Prince of Peace.
The peace only He can give is the peace that will get us through all of life's changing moments.
And I say this from personal experience.

"I'd rather be connected than perfect." (Me, too!)

2011-09-10T11:00:00.000-05:00

I finished Jane Fonda's autobiography this week. I guess it's fairly obvious by all the quotes I've shared that I really enjoyed it. She's a good writer and I connected with her early in the book. I felt like I was spending time with her these past two weeks, getting to know her, not just reading about her. So, now that I'm done, I think I may even miss her a little.

Toward the end, she talked about finally learning to find her voice in a relationship with a man (Ted Turner). I guess this may have been the biggest surprise for me about her life. I would not have looked at someone like Jane Fonda and suspected that she silenced herself in any relationship because she feared abandonment if she didn't. She has been so assertive and outspoken in public areas of her life, I could never have imagined many of the inner struggles she wrote about.

There is a C. S. Lewis quote I have always loved...
"Friendship is born at that moment when one person says to another: 'What! You too? I thought I was the only one.'"

And Donald Miller recently wrote on his blog...
"It’s true we impress people with our supposed perfections, but we connect with each other in our flaws...
I’d rather be connected than perfect."

Yes. So true. I love people who share their imperfections and struggles. I love feeling connected to others (even through a book). I love to spend time with someone who is genuine, real and flawed; someone who doesn't need to impress me; someone who is not afraid to be vulnerable and exposed! And I love having the freedom to be who I am and say what I think and feel in a relationship. I'm so blessed. Not only have I found that freedom and safety in so many friendships, I have found it in my marriage to John.

As I read the last chapters of Fonda's book, I could relate to a quote she included from psychologist Carol Gilligan, describing how women have "often sensed that it was dangerous to say or even to know what they wanted or thought -- upsetting to others and therefore carrying with it the threat of abandonment ... [That] the justification of these psychological processes [of silencing the self] in the name of love or relationships is equivalent to the justifications of violence and violation in the name of morality."

I grew up in an environment that highly valued silence. Being an emotional woman was defined as weakness and/or instability. Expressing my opinion was a sin, at worst, or unladylike, at best. But most of the time, my opinion just wasn't wanted or tolerated (especially by the men in my life). I've been called abrasive and aggressive because I dared to speak from my heart openly, with passion. And I have effectively "gotten the message" many times that it would be so much easier for some to love and get along with me if I would not have to express what I think or feel. Thank goodness, I have finally reached an age where I don't want or need that kind of love and acceptance anymore.

Although I won't always agree with everyone (including John), I have no desire to silence anyone. I think it's partly because I want to know what others are thinking and feeling. Even when it makes me uncomfortable, I want to know. My desire to know and understand and be able to relate to another person is far greater than my desire for them to make me comfortable. That is the kind of friend I want to be and the kind of friend I value most.

As I finished the book, I couldn't help but reflect on how far I've come and how much I've grown in the last few years. God has put a lot of people in my life who have contributed to that growth. But the most significant is John. I was a wounded soul when we met. I was far more damaged and vulnerable than I realized. But, to my continual amazement, he loved, respected and valued me without wanting to change me in any way. He has given me the most unselfish love I have ever experienced. And I hope I have given him the same. His love has made me less needy of approval and more resilient to criticism. I know I am never disposable to him. I can disagree. I can be emotional. I can have my own opinion. And whether he is in agreement or not, my feelings and viewpoints always matter to him. If he thinks he has hurt me, he can't stand it. He values our relationship as much as I do. Which is saying a lot.

Recently, he came home from a hard day and told me how the stress was taking a tremendous toll on him, mentally and physically. He said, "You probably don't even realize how bad I feel sometimes, because I love and respect you too much to dump it on you or take my frustrations out on you." And I thought, "Wow." I am certainly well aware that he doesn't take things out on me. But to hear him verbalize it in those words meant more than I could probably even tell him. He said the word respect with such emphasis. (My husband: the person who lives with me and sees me at my worst!)

I have never been one to focus on being respected. (Quite the contrary, in fact.) I have never felt like respect is something you demand anyway. It's something you inspire (unless you just want the military kind). I have certainly not gained John's respect by shutting down and shutting up. He knows my heart, my thoughts, my strengths, my weaknesses, my quirks .. and always my opinions. He doesn't want to change me or silence me. He loves and respects me for who I am. As I do him. And for that I am so very grateful. Not only because it feels so good, but because it has been like Miracle-gro to my soil.

Maybe as a direct result of this one nearly perfect man (in my eyes) and relationship, I have finally learned to let go of those who demand something I can never give: the silencing of my self.

Empathy

2011-09-07T19:35:00.002-05:00

I have about 100 pages left to go in My Life So Far.

This has been one of the best autobiographies I've ever read. I have read other celebrity autobiographies that were interesting, but not compelling. This book, however, has impacted me in a variety of ways. Especially thought provoking are the chapters "Hanoi," "Bamboo" and "Framed" -- where Fonda writes about her anti-war activism; her convictions and her regrets.

She wrote about talking face-to-face in 1988 with 26 Vietnam vets in a church hall. They sat in a circle. She shared information with them that they had not known or considered (knowledge that motivated her to activism). The vets shared feelings and emotions with her that she never could have known or considered -- because no matter how deeply she cared about the GIs, she had not been one. There was no way for her to understand what it felt like to be in their skin without having them explain it to her themselves. And, more importantly, she had to be willing to listen and HEAR them.

These chapters were extremely moving. I've read things that made me angry and things that made me cry. Some of the words spoken in that meeting made my heart pound and I had to read them out loud to John. I was very young during the Vietnam war and I didn't understand it. I have heard it said that the men who got us into that war knew all along it was a war that could never be won. Maybe I never thought deeply enough about that. But when I read it "spelled out" for me in the book -- information that propelled Fonda to vocally oppose the war -- I felt the same outrage she felt. I also felt outrage on behalf of the vets as I read of their unique mental and emotional wounds. It is obvious, in hindsight, that we were, as a nation, deceived and betrayed by political leaders. Of course, most of us realize that today. But back then a lot of citizens were buying the propaganda. Those who supported the government were thought patriotic. Those who opposed the system -- on behalf of those who were being put in harm's way -- were considered disloyal. (In addition to the history lesson, there were obvious parallels in my own life.)

The meeting lasted four hours. Fonda described it as "raw, angry, and emotional." But it was the beginning of healing. And the reason was clear. Not only were people talking, they were all caring enough to listen. They allowed themselves to feel empathy for one another and look at an event through a lens other than their own. Doing so did not nullify their own perspective, but it gave them a fuller perspective from which empathy could grow and healing could begin.

"The vets and I couldn't have started from two more wildly divergent places, but the fact of our being able to face one another for those four hours was important for all of us. I have come to feel that one reason healing doesn't happen more often is that the two sides don't allow themselves to really hear each other's narratives.
Empathy is the answer." ~ Jane Fonda

Whether you agree with her politics or not, you have to admit she has a point here. I think her quote is true of all wars; not just the ones fought with guns and bombs.

Resonating Quotes

2011-09-04T08:56:00.000-05:00

I am 214 pages into Jane Fonda's autobiography. There are always quotes I strongly identify with in autobiographies. No matter how different someone else's life is from mine, underneath the details are feelings and reflections I share with the author. Some of what I've read this past week has been especially meaningful because of the timing.

"Not that there weren't happy times, but pain engraves a deeper memory." (p129)

"His vices together with my black-belt co-dependency (put up with everything -- make it better) would bring us both grief." (p148)

"You can't look for something you don't know exists." (p148)

"Why had I not paid more attention and taken action sooner? ... I think it had to do with giving up comfort -- and I don't mean material comfort. I mean the comfort that ignorance provides. Once you connect with the painful truth of something, you then own the pain and must take responsibility for it through action. Of course, there are people who see and then choose to turn away, but then one becomes an accomplice. In Galileo, Bertolt Brecht wrote, 'He who doesn't know is an ignoramus. He who knows and keeps quiet is a scoundrel.' I'm a lot of things, but a scoundrel isn't one of them." (p197)

I love that last quote. I have made many decisions in the last ten years based on my unwillingness to be an accomplice to wrong through indifference. For all of the mistakes I have no doubt made, I am not guilty of apathy or choosing ignorance. I've watched a lot of other people make different choices and I've never been able to understand it except that it enables a person to maintain their personal comfort zone.

I experience tremendous internal conflict over injustice done to others. My convictions upset my comfort zone enough to make indifference and/or ignorance the intolerable and impossible choices.

Boys and Books

2011-08-31T07:37:00.001-05:00

As you can see, I'm not the only one in the family who loves to read.

<3 Love my Munchkins! <3

I like this quote...

2011-08-29T10:17:00.000-05:00

Forgiving before you've faced why forgiveness is needed is like sewing up a wound and leaving the bullet inside. Forgiveness can't happen until we have gone back to the dark place and experienced the feelings that have been unacknowledged since childhood, named them for what they are, and then separated from them. Taking this journey back in time requires courage. When possible, it helps to have the guidance of a gifted and empathetic professional. ~ Jane Fonda

I am only 39 pages into it so far, but I'm really enjoying this book.

Thinking...Thinking...Thinking!

2011-08-28T14:16:00.000-05:00

This past week has been a tidal wave of sorts. Not the way you might imagine, necessarily. But lots of thoughts and emotions, interactions with people I haven't interacted with in quite some time, healing moments mixed with sad reflections; all enveloped in steady waves of thankfulness. I am eager for the reflections to stop. However, the magnitude of my thankfulness is in large part due to the memories of another life.

For the last nine years, I've had the only recurring nightmare I've ever been plagued with. I've dreamed over and over that I was trying to get away from someone and couldn't. The magnitude of heaviness in those dreams is overwhelming. The dreams were merely reenactments of scenes that used to be my life (no worse than what I actually lived all those years). But it always felt so much worse because I had now experienced a life so polar opposite of what used to be my ordinary life. So, when I would wake up and realize it was just a dream, the emotion would be very intense. This will sound dramatic, but the only way I can describe my relief was that it seemed to me how a person would feel to walk into the sunshine and know they were free after being in prison. I know. It really sounds over the top. But I'm writing it anyway because it's the truth.

As recently as a month ago, I had two or three of these dreams within a few nights. In the dreams, I'm being belittled and objectified; I feel trapped and afraid. I am always intrigued by the intensity of my despair in the dreams, since my dreams are not of the worst moments I lived through; rather, the more ordinary forms of contempt that I just accepted. In my dreams, those ordinary moments are sheer anguish. But while I lived them, I just pushed through them and constantly tried to rise above them. Some of my friends have told me I was in denial. I just thought I was doing the right thing. My dad used to tell me that some people spent their whole lives trading one set of problems for another set of problems and if they would just accept the problems they had and work on them instead of running away, they would have a better chance at being happy. So I thought I was trying to accept the problems I had.

It took me a long time to figure out (with the help of a counselor) that instead of being very noble and strong, I was really an enabler who was constantly engaged in self-preservation. I was unintentionally doing the wrong things, and I really thought I was doing them for the right reasons until counseling exposed that I was doing everything -- at all times -- simply to protect myself from unwanted consequences. I wasn't helping the other person. And by constantly pursuing someone who was abusive, I was literally feeding the monster and enabling -- in the words of my counselor -- "ungodly behavior." He made me see that if I really loved this person, I would tell him the truth about his behavior, not tolerate it. I would risk rejection by confronting the unacceptable behavior for the sake of that person's condition and relationships with others. I began to think in ways I had never considered. And I began to make efforts to change my unhealthy responses.

That period of time is now "long ago and far, far away" for me. But I recently had to watch someone else make the difficult decision to detach and refuse to enable. And, as a result, I relived a lot of my own experiences with the rejection and objectification. But I knew I wasn't bitter because even in the midst of the disappointment and even occasional anger I felt, I could always feel some level of compassion for the person who was inflicting harm. And in light of these recent events, compassion is 95% of what I feel. It kind of amazes me, to be honest. But I believe God has done that for me.

There is a cost incurred in loving someone enough to be honest with them. It's far easier to placate people and make patronizing excuses for consciously backing away from them when they become difficult or draining. But when we do that, we are hurting their opportunities for growth and our collective opportunities for more meaningful relationship. When I ask John a question about myself, he always tells me the truth as he sees it. Even when he knows it's not the response I'm looking for. It's never mean-spirited. It's just honest. I love that about him. I don't want to be lied to. Even if it might make me feel good in the moment, it doesn't show me any respect.

One of the things John has said to me many times in our eight years together is, "I know you think you're doing the right thing and trying to be humble, but sometimes your attempts at reconciliation deteriorate into groveling. That upsets me because you invite people to walk on you. You need to have more self-respect." One time when he said that to me, I knew he wanted to see reconciliation as much as I did. But he said, "You are wanting this too much. If you have to grovel to have this relationship, it isn't worth having."

Although I haven't exactly felt wonderful about myself in the moments when he's told me that, I have appreciated his honesty because I know he always has my best interest at heart. He is trying to help me outgrow the need to be loved by everyone. And I think I've made a lot of progress in the last eight years. But I still have to consciously resist my impulses at times. Groveling used to be a way of life for me and it was expected of me. So, of course, it can be a default setting for me when I really don't want friction or confrontation.

I do sometimes feel angry at myself for the abuses I have willingly subjected myself to and participated in through enabling (or groveling). I feel embarrassed that I didn't have more self-respect at those times. But being angry or embarrassed gets me nowhere. The answer is to learn from past mistakes and grow in God's grace on a daily basis. And I know I have.

I may sometimes feel embarrassed, but I'm thankful I do not feel bitter about my past.

I like this quote from a book I just finished.

"For the one who would be neither victim nor victimizer but experience true freedom, there is no place for bitterness, anger, and unforgiveness. To succomb to these impulses because of life's injustices is, unhappily, to perpetuate the hold these injustices have on the victim and turn victimhood into a full-time occupation." (William Dembski)

Marian Update: CAL-101 (Conclusion of 12th Cycle)

2011-08-25T18:17:00.001-05:00

My mother-in-law had her regular check-up today. Her nodes and blood counts all look good. Her only issue currently is that she is anemic. So Dr. Flinn ordered an iron study. But the anemia is not severe and there is certainly no crisis.

Marian has now completed the 12th 28-day cycle of her clinical trial and joins John in the extended phase study of CAL-101. It's hard to believe it has been almost one year since she began treatment already.

Both my "patients" are doing very well on CAL-101 and I am so thankful to be able to report such good news! I realize this is a very short update from me, but things are uneventful -- in a good way! -- and there just isn't much more to say!

Reflecting

2011-08-23T08:54:00.002-05:00

I wrote my last blog post Sunday morning. Sunday afternoon I got a phone call from my son, telling me he had just gotten the news that his dad had died suddenly. I had mixed feelings about the post I had just written in light of that event and who might be checking my blog in the next few days. But I left it the way it was.

My blog is a public journal. I share from my heart. And I've thought about what would be appropriate or inappropriate to share in this moment. It felt strange to say nothing. But I wondered if maybe nothing was the most appropriate under these circumstances. And then I read the comment left by an old friend on my last post and the words came to me. So, this post is simply being published to direct you to the comment section under Sunday's entry.

Rest in peace, Dennis. The pain of being in your life was great. But out of that pain came many blessings. I hold nothing in my heart against you to this day. I always cared. I always felt compassion. I always wanted the best for you, whether you knew it or not.

Great Blog Post on Recovering from Spiritual Abuse

2011-08-21T08:42:00.001-05:00

Spiritual Abuse is Invisible Trauma

I don't write about spiritual abuse nearly as often as I once did. I think that's a positive sign indicating the status of my own spiritual and emotional healing. It's not a subject I give a tremendous amount of thought to; nor do I spend nearly the amount of time reflecting on my past or obsessing about how people from my past feel about me these days. There was a time (not that long ago, in fact) when I wondered if I would ever be able to put it all behind me and live fully in the present. But it has happened. Today, I have little more than a passing interest in the current "goings-on" of the group I came out of. And although there are people from my past whom I will always love, I don't need them to love, approve of, or understand me anymore.

That is a level of freedom I could only dream of a few years ago.

I share this for the benefit of anyone reading my blog (or my book) as a result of an online search on the topic of spiritual abuse recovery. I am living proof that you CAN heal and not be stuck endlessly in the hurt, disillusionment, anger and bitterness. It takes time. And it takes help. You need support and encouragement from others you can relate to. But you do not have to feel damaged forever. And since I am a person who has not only survived this experience, but has thrived spiritually and emotionally since leaving it all behind, I always want to be a source of encouragement to others whose wounds are fresher than mine. That is why I wanted to share the above link.

God is doing new things in my life at this very moment. Things I never dreamed of Him doing. I don't know what all is next in my life's journey. But I believe the last eight years have prepared me for whatever God has planned. I'm not a very adventurous person. And I don't like change. But I have learned from experience that while getting outside my comfort zone is only temporarily uncomfortable, it always facilitates and promotes growth.

Even though I'm a long way down the road in my own healing from spiritual and emotional abuse, I still related to the above article regarding the trauma inflicted by those who damage us spiritually and emotionally on such deep and vulnerable levels. I was a victim of emotional, verbal and sporadic physical abuse in the past -- as well as the spiritual abuse I detailed in my book. I didn't scratch the surface of the other abuses that left their marks on me as a woman. And I never will write in depth about any of that. But I am someone who strongly relates to abused people and no matter how complete my healing becomes, I always will.

Food Reviews (Panama City Beach)

2011-08-17T10:40:00.007-05:00

I frequently am asked for my suggestions on where to eat in various places, since I am well known as a "foodie" by all my friends and relatives! I have been writing for a PCB website and thought I would share a link to my growing list of reviews for anyone who may be interested...

For Panama City Beach Dining options:

Shari's Restaurant Reviews (click on "Continue Reading" to go from the summary page to the full article).

You will also find articles in a variety of categories located in the drop-down menu under PCB Guide at www.visitpcb.com.

However, my favorite articles will always be the food reviews!

The CLL/CAL-101 Journey Continues...

2011-08-16T20:29:00.003-05:00

John had his routine eight-week doctor visit and labwork today. He continues to do great on CAL-101. He was required to have scans every 16 weeks for the first 12 cycles (clinical trial protocol). But ever since he's been in the extended phase of the trial, he has only had to have scans every 32 weeks. I hate it that he has to have so much exposure to radiation. But we are thankful he is in this clinical trial and will gratefully comply with the requirements. CAL-101 has been a miracle drug for John thus far.

He does still have moderate fatigue in the late afternoon and evening. But he feels good in the morning, is an early riser, and still has no trouble working a nine hour day. (Believe it or not, he has eased up as far as his hours. He used to work eleven to twelve hour days.) He goes in early (leaves the house at 6:00), but is always home by 5:00 now and sometimes earlier. He works part of the day on Saturday (used to work a full Saturday) and has gotten really good about taking off regularly to get away for a few days to relax.

One of the positives to come from John's CLL diagnosis that I am most thankful for is that he is finally taking better care of his health and getting more rest. I have always accepted that he is a very driven businessman with the work ethic of a bygone era. I could complain (and at times I have whined a little), but he is equally consciencious at home. It is a rarity for him to let me wash a dish after a meal. He never asks me to do something he could do for me. And I never have to make a "honey-do" list -- because he even notices what needs to be done before I do. I recognize that all these things I so appreciate about him are aspects of the same "worker bee" personality. So I've tried my best not to harp on him about working too much. But I'm really happy he is seeing the importance of not pushing himself quite as hard as he always has in the past. I believe it could extend his life -- and definitely his quality of life. (Not to mention the quality of MY life!)

John started CAL-101 on May 27, 2010. For CLL patients who have not previously followed this blog, his lymph nodes (which were very large) began shrinking immediately. He has had no side effects or infections. And he continues to have no disease progression. Everything is stable. Blood counts are normal. Nodes are undetectable. He looks great and is running on the treadmill again three times a week.

During our visit today, Dr. Flinn told us that he has more lymphoma patients on CAL-101 than CLL patients. Not all CLL patients have done as well as John. Some have had disease progression and/or side effects. But John has had optimal results at the lowest dose given. We are so thankful.

So often my thoughts go back to those first few weeks and months after John's diagnosis, when I was on such an emotional rollercoaster. In those months, John did not want to tell anyone about his leukemia. He is so private (and I am so NOT private). He didn't want to have to talk about it. He didn't want attention focused on himself. He just wanted to be treated no differently than before the diagnosis. He took it in stride so much better than I did. All I could do was throw myself into doing research and trying to make sure he made informed treatment decisions when the time came. It was a very hard time for me emotionally. And all I could think about most days was the threat of losing my husband. Anybody who knows me knows how much I adore him. He is so good to me and such a good man. When I would think of possibly losing him even twenty years from diagnosis, it just about killed me inside. (I'll never forget the day I looked at him with tears in my eyes and he said, "I'm not dead yet" and made me laugh. He always makes me laugh.)

I told John today, "If I had only known at diagnosis how well you would be doing right now..." And then I said, "Good thing I'm so stoic and hid my emotions so well." And we both had a good laugh.

Whenever I think about those early weeks and months, I always remember the day I was watering my flowers, crying, and begging God to let John have all "good markers." I had read so much and knew there was a very indolent form of CLL and a more aggressive form, and then patients who feel somewhere in the middle of those. I knew the prognostics would put him in one of those categories. And I was so scared he would fall into the aggressive category. But as I prayed that day and cried out to God, He spoke to me. His voice was not audible. But I can tell you absolutely that the thoughts He impressed on me were not my thoughts.

I mentally heard these words: I don't want you to put your faith in the markers. I want you to put your faith and hope in Me and in My promise that I am working all things for your good. Even this.

And then a little later, this: The day may come when I take John. But you haven't lost him yet. He is not only very much alive, he is healthy. There may come a time to grieve. But that time isn't now. Don't give up today grieving an uncertain tomorrow. Everyone's tomorrows are uncertain ... diagnosis or no diagnosis.

I can't tell you all my tears dried up that day or that I never had any more anxiety. I still struggled to come to terms with this diagnosis and our uncertain future. But from that day forward, I had peace. When I struggled, I reminded myself of those words. I made up my mind not to give up the joy of today for the fear of tomorrow. And I have reminded myself SO many times that God did not have to give me John at all. But He did. And I determined in my heart to make the most of every day He gives us.

Right now it's so much easier because things feel "under control."

But they always were under control ... God's control.

I think my fear (maybe yours, too) is always that God's plan won't line up with my plan. But the only solution to that fear is trusting in Him and in His promise that He is working all things for our good. Even the things we don't understand. And especially the things we cannot control.

By the way, John's prognostic markers did not turn out to be all good. The first three (out of four) were the best he could have (13q deletion, CD neg., Zap 70 neg.). We had to wait longer on the mutation status results. But the CLL specialist at Mayo (Dr. Clive Zent) told us he would be very surprised if the result did not come back mutated - which is the better prognosis - because of the other markers all being good.

I remember breathing such a huge sigh of relief at that point. And then we got the phone call weeks later that John was unmutated. This doesn't mean anything to you if you are not a member of the CLL community. But being unmutated means you are more likely to progress faster, need treatment sooner, and not respond as well to treatment. It was disappointing, to say the least. Dr. Zent was surprised. I was surprised. But I reminded myself of the words I'd heard the day I prayed for all good markers. God knew John's markers before we did. He was not surprised.

God knows every aspect of the rest of our journey. I don't have the promise that I will never lose John any more than anyone reading this blog has a guarantee of tomorrow with their loved ones. On the flip side, I could be gone tomorrow and John could be here for another 25 years. But even if we live to be 90, this life is short. We will all "go" one day. And every day is a gift.

I am more fully appreciating the gift of today than I have at any other time in my life. I told John the other night that I am in touch with my mortality. He laughed and said, "No, you have a firm grasp on your mortality." (He thinks I'm a bit morbid because I think about it - and talk about it - regularly.)

But the up side of that is, I don't take one of my days or one of my blessings for granted. And I am thankful. I'm thankful I have realistic hope that John will be here for a very long time. But I'm even more thankful that our hope extends beyond this life.

Inspired Saturday Morning Thoughts...

2011-08-13T11:12:00.008-05:00

The Stone

I shared the above link because reading that story online this morning inspired the thoughts I want to share in this blog post. It is a really cool story with more than one great message, and it is well worth taking the time to read.

I am going to share something personal from my past. But in no way am I sharing the experience to make you feel sympathy for me or to cast a shadow over anyone else. I see God at work in the experience from the vantage point of today. And that is why I want to write about it. At this stage of my life, there is absolutely no bitterness. It's just a part of my journey.

I now see this as just one example of how God takes something painful and uses it for our ultimate good.

My mother died when I was 28 years old. I have two younger brothers. And at the time of my mother's death, I had one sister-in-law. Three years following my mother's passing, I gained a second sister-in-law.

In the last weeks of my mom's life, she wanted to have a very personal and private conversation with me about what she had chosen to leave me. She told me that my dad would have control over all her jewelry because of the monetary value. My assumption at the time was that she thought he might sell some of her diamonds to recover the financial investment. (She had several large diamonds in rings and in a necklace). But she told me she wanted me to have the item that was the biggest surprise and the most precious to her of all the gifts my dad had ever given her; her white beaver fur coat. And then she proceeded to tell me how to care for it and store it. It was a hard conversation because I didn't want to talk about things and I didn't want to acknowledge that she was going to die. But, at the same time, hearing her tell me how she felt about this coat and that she chose it for me herself was very meaningful. As a daughter who felt she could never quite be what her mother would have chosen in a daughter, this bequest made me feel extremely valued by and special to my mother.

Quite honestly, I have never cared for fur coats. So the value of the fur was zero to me. I rarely ever wore the coat. It was almost too special to wear. (Something I strongly related to in the above story.) The value of the coat was 100% in the sentiment and love it represented. And ultimately it began to disintegrate no matter how carefully I tried to preserve it. But with or without the actual coat, the memory of my mother's words and wishes that day will always be a part of me. The fact that she needed to have a conversation with me in which she conveyed how special and valued I was to her as her daughter meant more to me than any gift of any monetary value she could have given me. I treasured the fur coat because she treasured it and because I finally realized that she treasured me. I am now a 52-year-old woman (three years older than my mom was when she died) and remembering that conversation still brings tears to my eyes.

My dad didn't do anything with my mother's jewelry for a while. And then one day he gave me my mother's watch. He said he had chosen that particular item for me. Again, the watch was not at all my taste. It had little diamond chips sticking up in every loop of the white gold band; chips that pulled snags in all of my clothes if I tried to wear it. And I had hoped he would choose to give me one of my mother's rings. No particular ring, just one of them. She had many. But I would not ask because I never wanted anyone in my family to be able to accuse me of caring about "things." The only item I had ever specifically asked for was my mother's recipe box -- because it had handwritten recipes and my mother's handwriting was -- and still is -- valuable to me.

Shortly after I was given the watch, my dad gave beautiful diamond dinner rings to each of my sisters-in-law. And I was deeply crushed. Not because of the value of the diamond rings being so much greater than the tiny diamonds in my watch. But because that action conveyed to me that I was the least special to him as his actual daughter. I felt humiliated as well as wounded. I felt insignificant. I felt devalued. I never wore the watch again after that. It became a symbol of my lesser value to me and it stayed in a drawer for years until I had the idea to remove the band, add posts, and wear the two sides of the band as drop earrings. I still don't wear them often. But the "stigma" I once felt over the one gift my dad chose for me personally seemed to go away after I changed them into something I could actually enjoy wearing.

As a side note: I was once married to a man who told me emphatically that no matter how much money he ever had, he would never "waste it" on a big diamond for me. A little more "devaluation" added by another significant male.

Fast forward to 2003.

After a bitter and painful divorce, I met John and fell in love. Just as I had never asked for a big diamond in the past, I did not ask John for a big diamond. When he would take me into jewelry stores and ask me to show him what kind of rings I liked, I was shy about pointing to anything large. It was all about him, not what he could give me. I didn't want him to think I was interested in "things." Little did I know that he had already chosen a ring for me (a surprise) and was trying to make sure I would like the cut and setting. AS IF any woman would not have been absolutely thrilled with a 3.86 carat marquis diamond. (Are you kidding me???)

I've gotten used to wearing an ice skating rink on my left hand, but in the first few months of wearing that engagement ring, I could not look at it without tears. Not because I had ever longed for such a large diamond. I really had not. It was never about the diamond or the monetary value. I'm truly not a "things" person. I am a relationship person. I just wanted to be loved and valued. It's all I've ever really longed for. And every time I gazed at my diamond, I was in awe that any man would love and value me enough to WANT to give me a ring like that (even if he could afford to). And, to me, my ring screamed that someone really, truly loved and adored me.

In reality, a large diamond doesn't always represent love and value. In the case of a Kobe Bryant, a big diamond can be a symbol of betrayal and forgiveness (or tolerance). But because of the wounds inflicted on me through jewelry "statements" (both spoken and unspoken), John conveyed such worth to me through the choosing of that ring. He had no idea. But God knew every detail of my life and every wound I had ever suffered.

I believe with all my heart that God chose John for me. And I am humbled to this day, eight years later, that God would be so good to me. Any time someone tells me I deserve John, I am quick to correct them. No way. I could never deserve him. He is a blessing. If I took credit and allowed myself to believe I deserved my blessings, then I would have to view anyone who lacks my blessings as being less deserving than I am. And I know that isn't true.

I got over the injury of the way my dad chose to distribute my mom's jewelry a long time ago. I got over it because I wanted to get over it. I didn't want to be defined by it. I didn't want to make it a focal point of my life. And I truly wanted to forgive from my heart. One of the ways I overcame my emotions was to acknowledge to myself and to God that obviously He did not see fit for me to have those items for some reason. And I chose to believe that in His wisdom, He was teaching me something far more valuable than diamonds. I chose to cherish my mother's recipe cards as more meaningful than a piece of expensive jewelry. But for many years, there was still pain associated with the memory. Until God brought John into my life. And only after God had taught me not to over-value something like a diamond, He (through John) put a stunning diamond -- the likes of which I had never even seen -- on my finger. And I remember saying to God, "In all those times I felt less valued because I wore a cubic zirconia or because my dad chose daughters-in-law over me, You knew I was going to one day have not only a spectacular diamond, but something of much greater value ... a spectacular husband who loves and cherishes me. You knew this was going to be a part of my journey, too. And You knew there would be deeper meaning and joy because of my wounds."

I think this was when I started to comprehend that God does care about the details of my life. He is IN the details. But that means that He was also in the painful details and the things I could not understand while I was in the middle of hard times. It's easy to give Him credit for the blessings of today. I think sometimes we want to remove Him from our pain as if He lacks the power to intervene. But the truth is, if He is sovereign (and He is), He is sovereign over all.

Today I am actually very happy that I was given my mom's watch. All feelings of devaluation attached to it are gone (as far as I can consciously discern). No females have descended from me. I have a son and three grandsons. But I have four nieces who are very special to me. And none of them got to know their Grandma Jane. They were all born after she died.

Each of my earrings has five little teardrops with a small diamond in each. And one day it occurred to me what a special privilege I have to share a little bit of Grandma Jane with each of my nieces. A ring could not be divided among each of them this way. But I have decided that I am going to take each strand apart and make a one teardrop set of earrings for each of my nieces (keeping one teardrop for myself). And I will give them their special Grandma Jane earrings on a specific special occasion (as yet to be determined by me). I'm having a hard time deciding if this occasion should be their 18th birthday, their high school graduation, their wedding day, or what. I want it to be the same for all of them. And because I'm excited about doing this, I will probably choose the closest occasion (since my oldest niece will graduate after her 18th birthday). I hope this gift will convey how special they each are to me and be a lasting reminder of how special they would have been to their Grandma Jane.

I think my idea would please my mom. And that makes it an even greater honor for me.

God knew how much it would mean to me to do something like this for my nieces. He made a greater gift possible through what I once viewed as the lesser gift. That is so like Him. He turns everything upside down. Strength in weakness. Beauty from ashes.

My worth can't come from my dad or my brothers or my son or even John. It certainly cannot come through possessions -- even treasured possessions. I comprehend my value to God through the sacrifice of His Son. But I'm thankful He has turned enough things upside down in my life to show me His sovereignty and His love in tangible experiences that strengthen my faith and my ability to trust Him.

A WEEK WITH PAX

2011-08-11T20:11:00.008-05:00

If you've been checking my blog, you have been seeing no activity recently. That's because I have had my youngest grandson for a week while the rest of his family went to the beach. He was picked up and taken home today. It was a memorable week and I'm not surprised I'm tired. I just didn't expect to wind up with an injury.

He looks so innocent and harmless, doesn't he?

I posted lots of pictures on Facebook (so his mommy could see how he was getting along). But I never did get around to blogging. And tonight it is a bit of a challenge to sit at the computer. You see, Pax and I had a moment yesterday morning when I was trying to take something out of his hand that he very much wanted to keep in his hand. And in the tussle of picking him up and putting him on my lap, a little finger somehow collided (unintentionally) with my right eye ... resulting in a scratched cornea. (Yes, ouch!)

After the initial pain subsided, my eye just felt irritated for the rest of the day. I thought it was no big deal and would just heal on its own. But last night it became painful. And right now it hurts a little more than it did earlier in the day. I guess blinking all day long aggravates it. However, it wasn't the pain that motivated the doctor visit. When my vision was still blurred today, I realized that I definitely needed to see the doctor. And I'm glad I went. He gave me a prescription for antibiotic eye drops and said the scratch is small enough that it should heal quickly without having to wear a patch (thank goodness). I should have gone in yesterday, but I really thought it would be better on its own today. The inner part of my eye is so sore, I thought the scratch might have been to the white part. But ... I was wrong!

Right now I can tell that I don't need to be looking at a computer screen any longer. So I'm going to do the smart thing and let my eye rest a bit. In fact, I'm going to let all of me rest a bit!

Clinging, Limping Strength (Jacob, Part 4)

2011-08-03T11:21:00.000-05:00

This is the last sermon in Danny's series on Jacob. Hope you enjoy it. I know this one was the most intense for him to preach.

Clinging, Limping Strength

Happy NINTH Anniversary to my kids!

2011-08-03T10:01:00.000-05:00

I thought I would share just a tiny fraction of my favorite memories from Danny & Rebecca's special day, August 3, 2002...

Which, by the way, was also one of THE HAPPIEST DAYS OF MY LIFE!

Nine years ago, I gained a beautiful daughter. And in the last nine years, three adorable grandsons have been added to our family. I am a very blessed mom.

I am not a typical woman in a variety of ways. No need to share all of them. Some are funny. Some are embarrassing. Some are possibly very positive (no offense intended to those of you who are more typical). But when it comes to my son, I have never felt the slightest desire to control him, live through him, or be his number one priority. (I think it's no secret that some mothers do inherently have these issues with daughters and sons, but particularly with sons.)

I always looked forward to Danny growing up, having a wife and a family of his own. Yes, leaving the nest. Not because I wanted the freedom from responsibility for him, but because that is the natural cycle of life and I looked forward to seeing him grow into a man, husband and father. I also looked forward to having a daughter-in-law and grandchildren. To me, it was ALL good! Everything to gain, nothing to lose. When friends say, "Don't you wish they could stay little?" My answer has always been, "No. Not at all." I enjoy having an adult relationship with my grown son. And I love being a grandma. There are great things about getting older. (They outweigh the ones that are not so great.)

Some of the best adivce I think I EVER gave Danny was when he began dating in high school. I remember telling him that whenever he dated someone who might possibly become a serious girlfriend or his future wife, to PLEASE not go overboard telling her how close we were or what a good cook I was or anything that sounded like she had anything to live up to (aka: compete with). I never wanted her to view me as a rival and stressed to him that he could unintentionally sabotage a potentially good relationship by getting us off to the wrong start. I remember saying, "Don't give her any reasons to resent me right off the bat."

I told him that when he met the right woman, she should ALWAYS come before me. I never wanted him to feel any conflicted loyalty issues. I never wanted my feelings to be between them. She should know from Day One that she did not have to please me or have my approval. And I told Danny that even if he married someone who didn't particularly like me, my gift to him would be unconditional love and acceptance. I told him I would do the work of having the best possible relationship with her because I never wanted my role in their lives to be demanding or stressful. I truly desire to enhance their lives and not have a lot of expectations. This may sound like an unrealistic goal to some, but it genuinely has been my goal as a mom/mother-in-law. I remember vowing to myself that even if I did not like the person he chose, I would do my best to make certain she never felt that from me.

Reflecting on those aspirations today makes me laugh because I have the best daughter-in-law in the world. She is easy to love. It hasn't been hard work to get along with her. She has never treated me like her rival. She has always loved that Danny and I are close. She makes me feel so valued as a grandma to her boys. And I consider my daughter-in-law my very dear friend.

Another memory that always makes me chuckle is of a repeated conversation I used to have with friends who reminded me frequently that I only had a son and sons just naturally gravitate to their wives' families and what if Danny married a girl who hated me...??? They weren't trying to worry me. I think they thought they were being realistic and preparing me for the inevitable. But I would always just laugh and say, "That's not going to happen. But even if it does, I will do the work of loving her so well that ultimately she will just have to love me." And I really did believe that. I never feared losing Danny to a wife. I just knew I wasn't going to compete for him that way. The most important thing to me was that Danny have a good and healthy marriage; not that my needs were met as a mother. And it has all worked out so beautifully. I'm not taking credit for that. I'm very, very blessed. I could have had the same attitude and a different outcome. But I do think I had my priorities in the right order.

Am I a perfect mom or mother-in-law? Far from it. I'm emotional. I have sensitivities.

I remember the day the kids were here and I was going into my over-explaining mode (because I thought Rebecca thought I was giving the boys something that wasn't good for them). The reality was that she wasn't scrutinizing me at all, but I have this overdrive need to please and make sure everyone knows my good intentions. She said, "Relax, Grandma Shari." And every nerve ending in my body stood on end. In that moment I had to decide whether I would just silently rise above my emotional trigger or whether I should open up and explain the origin of my trigger. You all can guess without me telling you ... I chose the latter.

We wound up laughing about it. But when I began, "I need to tell you something..." I remember the look in her eyes. I explained that the words, "Calm down" and "Relax" had -- in the past -- been used in a very belittling and condescending way to antagonize me. To this day, when someone says those words to me (even in fun), I have an internal physical reaction. And I have occasionally felt provoked enough to respond, "Don't tell me to calm down." (Leaving the other person wondering why I got so upset.) John understands how much I dislike those words, and why, and he rarely ever says them accidentally. The only times he has said them were when he was trying to tease me and even though I take teasing extremely well, I never respond with laughter to those words. (Danny said he knew exactly how the words were going to affect me the minute they were said. He said his stomach tightened at the same time mine did.)

That is just one of my little quirks. I have many. I am so far from the perfect anything. But my daughter-in-law makes me feel like a great mother-in-law. I could even tell her how much those words bothered me and she cared enough about my feelings to understand and laugh with me ... and not say them to me again. LOL. I trusted her enough to tell her. If she was the kind of person who would have used my sensitivity as a weapon at a future vulnerable moment, we would have a completely different relationship. But I know she genuinely cares about me and my feelings. Believe me, I know how blessed I am.

Oh, how the time flies when I start writing on my blog about memories and people I love. I have to get off this computer and get ready for a lunch date. But I just wanted my kids to know how thankful I am for the last nine years, and for the blessing their little family unit is to Grandma Shari and Poppy John.

Happy Anniversary, Danny & Rebecca!

I love you both so much!

New VisitPCB Website is Launched!

2011-07-31T15:03:00.010-05:00

If you get a chance, check out this link:
http://visitpcb.com/index.php?/company-profile.html

It will take you to the company profile page of my friends' new Resort Condo Services website. My friends are Ricky & Karen (E.) Jones. And this is the website I have been doing some part time writing for in recent months.

Karen and I became friends about seven years ago in a women's small group at church. It was the one I talked about in my book where I was asked to be a small group leader. When the lecture portion was finished, the leaders were asked to stand and those in attendance were instructed to form a small group around the nearest leader's table. That was the first time we met and we've been friends ever since. We found out we lived practically around the corner from each other. We started meeting for lunch occasionally. The friendship blossomed and we introduced our husbands. And now the four of us are great friends as well.

The company profile page of the website gives a little background information on them, their business and their two "staffers" -- Karen D. Jones (rental manager) and myself (website content manager) -- as well as how we all came to be doing what we're doing with respect to PCB and the condo rental management business.

John and I have been to PCB several times since we were invited to join Ricky and Karen for the long 2011 New Year's weekend there. We have gone back several times this year already. And in April they asked me if I would be interested in doing some part time web writing for their website. It is a perfect fit for me. There's no pressure or particular number of hours. And now I can claim dining out at the beach as "work." LOL. (The only problem is that I sometimes forget I have a job!)

(New Year's Day Dinner at Firefly.)

I have not written everything on the website. Ricky & Karen have done a lot of work themselves. I tackled the PCB Guide, the intro, and the resort descriptions to help them get the site ready for launch. My agenda now is to continually add and update the PCB info available on their website. And I may do some other writing as well, including a monthly newsletter.

They have generously given me the title "Website Content Manager." It makes me feel very official. They are treasured friends and I hope I can be an asset to their business.

I just thought I'd share a link to promote the site as well as PCB. I highly recommend Resort Condo Services for condo rentals in Panama City Beach. My friends will take good care of you.

You may have noticed that I am the only one who isn't a Jones. Karen E. and Karen D. are not related, but share the same name (minus the middle initial).

We talked about changing my name for conformity, but I am emotionally attached to Howerton.

Divine Comedy

2011-07-25T16:16:00.003-05:00

This is a link to the first sermon in a four part series on the life of Jacob ~ by Danny Bryant (my son).

http://redeemernashville.libsyn.com/jacob-part-one-7-10-11

The second and third installments will be on the website today and the conclusion is yet to be preached next Sunday morning at Church of the Redeemer in Nashville, TN. (It will also be on Redeemercast the following week.)

Danny is an assistant pastor and normally preaches one Sunday every month. But this month he is preaching four Sundays in a row for this series. I wanted to share a link for anyone who might like to listen. Each installment is about twenty minutes or less. And Danny's style is very conversational. I know I say this as a mom, but I would enjoy his preaching even if he wasn't my son. (Spoken like a true mother, right? I know. I know.)

I got some things out of the first two sermons that I had never thought about in connection with this Old Testament story.

Oh, and by the way...just in case you do listen...I am not the family member who told the joke. ; )

Part Two: Created for Blessing

Part Three: The Descending King

I love you, Jen!

2011-07-22T22:45:00.004-05:00

My sister-in-law Cheryl and I drove to Louisville Tuesday to see my cousin Jennifer (that's her on the left), her husband Nathan and her mom/my Aunt Jeanie. I took homemade frozen lasagna and sourdough bread. We got there in the early afternoon and never stopped talking until we left around 10:00. There was a huge storm after dinner and the power went out. So we sat in the dark with a candle burning and talked for a long time until I finally started to get sleepy.

Cheryl and I had a reservation at the Marriott Courtyard just two and a half miles away. So we crashed there. I think we talked until midnight and then finally went to sleep. We slept in Wednesday morning, then went back to Jennifer's about 11:00 Louisville time (it was only 10:00 to us). Grabbed some coffee and Krispy Kreme donuts on the way over. And then we proceeded to talk until 5:00 pm without stopping. Literally.

My poor cousin has laryngitis now. I guess we know who talked the most. (Just kidding, Jen!)

Jennifer is 38 and I am 52. We are first cousins. However, with fourteen years separating us we did not play together as kids and we've always been in different phases of our lives. It doesn't seem real that she could be approaching 40. I realized that I still think of her as a kid. And she's not! (Sorry, Jen!)

We had a really good time together in spite of the circumstances surrounding our visit. (Jennifer lost her maternal grandmother a little over a week ago and they were very close.) We hadn't spent that much time together in I don't know how many years ... if ever. We talked and talked and talked. We laughed. We cried. We connected. It was emotionally intense at times. And those were the moments when we found ourselves relating to each other most. At one point in our conversation (both of us in tears), she told me she had never felt more connected to me than she did when I was sharing a few details I had left out of my book. She thought nobody understood certain aspects of her pain.

I think if we were all willing to be completely open and vulnerable, we would find out that we are not actually alone in any of our pain.

I am a person who embraces vulnerability. Although I am pretty insecure in certain areas -- and that usually makes a person guarded -- I am very unguarded. I put myself out there all the time. Sometimes I wind up feeling silly or hurt, ignored or even exploited as a result. But I really don't want to change that part of myself. Because any time I am able to connect with another person and hear them say they feel less alone, it is so rewarding. Seeing the look in Jennifer's eyes when she realized I understood her heart made me feel thankful that I had experienced a similar heartache. Without it, I would have had so much less comfort to offer my cousin.

Jennifer did something for me that meant a lot more than she will ever know. She had a box of old pictures and mementos from our grandmother that had been sent to her. Our paternal grandmother (Nanny) died in 1970, when I was ten and before Jennifer was born. I don't have many pictures of her. But I have memories. And I've always wondered what our relationship might have been like. For some reason, I've always thought she and I would have been close. From what I know of her, she was also very expressive. And she was a writer. I've always believed that I have a lot of her in me genetically.

So, when Jennifer began showing me pictures and writings and really wanted to share them with me, I was pretty overwhelmed. Over and over, Jennifer would say, "Take anything you want. Just scan it for me. I want you to have it."

John called me in the middle of this and I was so excited telling him about our discovery of a poem Nanny had handwritten from a difficult time in her life. I felt like I had a piece of her heart. He said, "Take a breath, Darling."

Nanny had no idea that one day her picture would be on Facebook and her granddaughter's blog. But I have a feeling if she were alive today, she would be a blogger and Facebooker, too! That's her on the left, with her mom. I don't think I have ever seen a picture of my great grandmother, Beulah Case, before.

Below is another picture I don't remember ever seeing before. It's me with my Dad and Mom a few months after my birth.

Thanks, Jen...
For the memories we shared and the ones we made!
I love you!

Relating to the Struggles of Others...

2011-07-18T08:40:00.002-05:00

I have now read three books authored by recovering drug addicts. A couple of years ago I read Clapton: The Autobiography. I read High on Arrival by Mackenzie Phillips last month. And Saturday I finished reading Pill Head by Joshua Lyon. I don't have a fascination with drug abuse. But I am interested in the struggles of others.

I actually read Clapton because the hard cover edition was given to John as a Christmas gift. He only "reads" audio books. And I can't resist an autobiography. So I took ownership and read it. I bought High on Arrival after listening to several of Phillips' book tour interviews. As a human being, my heart went out to her. And I wanted to read her story. But I had never even heard of Pill Head. It was just a book that kind of jumped out at me as I was browsing Barnes and Noble last week, waiting for John to get something he was looking for.

Addiction has been on my mind lately. Partly as a result of having just read Phillips' book and also because I know people who struggle with addiction. I want to be able to understand what they go through so I can be a better friend. And I know that on so many levels, I can't fully understand. So, when I saw this book (written from the perspective of the addict), I had the urge to read it because I thought it might give me valuable insight into a problem I don't have.

I've wondered out loud to John, "How can a person choose such temporary relief again and again when they know the long lasting consequences that immediately follow the temporary relief?" John's answer is always: "You can't understand the mind of an addict because you're not an addict." His first wife was an alcoholic and he knows the behavior well, but also knows it will never make sense to someone who doesn't suffer from addiction. Again and again (for the benefit of his daughter), he tried to help his ex-wife even after they were divorced. He never could. She ultimately died at the age of 46 as a direct result of her alcoholism. I never knew her. But I've been told that she was very sweet before she started drinking. And whenever I think about her, I feel such compassion. I think about what an amazing man and husband John is, and that she could be living my life right now. But because of her addiction to alcohol, she is dead.

I'm always trying to understand why people are the way they are. (And of course many times I'm trying to figure out why I am the way I am.) I recognize that some of my traits are inborn. But some of my coping mechanisms have developed over time, as a result of specific kinds of wounds. I know my own wounds and why certain sensitivities exist. But I can't always know someone else's deepest wounds. I have learned throughout my life that there is always more to the story than a person's behavior tells you.

I heard Tim Keller preach a sermon once on how we must first feel morally superior in order to harbor harsh judgment or a grudge against another person. While I might feel comfortable with a judgment call here and there, I find that I am very uncomfortable feeling morally superior to anyone. So connecting those dots became a useful tool for me.

Pill Head was a difficult read in many places (as was High on Arrival). And it was more than just the language. It would be easy for someone like me to read either of those books and feel a sense of moral superiority or disdain. But I came away from both stories feeling almost unfairly blessed that I have never had to fight this battle. There is nothing in me that craves a substance as a means of escape. It's not that I'm stronger or better. The impulse, the temptation, the tendency just doesn't exist for me.

This author described his social anxiety and how he needed chemical help just to be able to loosen up and talk to people without fearing their rejection. I'm the opposite. I talk too much. And the last thing in the world I need to be is more open. I don't need any help feeling at ease with people.

Good company and a great meal produce a sense of euphoria for me. I have often wished that I could tone down my personality a bit. But I've never needed chemical help to get maximum enjoyment out of simple pleasures. I'm not stronger or superior. I know that I am as flawed as the next person. I just don't think about how I might escape feeling or facing something unpleasant. Although I often wish I could be less emotional, I'm thankful that I am comfortable feeling and expressing emotion. Because trying to control feelings and moods seem to be a gateway into substance abuse of all kinds.

According to the stats in Pill Head, millions of people are taking prescription painkillers to numb emotional pain. And according to experts quoted in Lyon's book, once they become addicted, their brains are permanently rewired to want pills for the rest of their lives -- even after they've gone through withdrawal and no matter how long they've been sober. I know how frustrated I feel with little things I'm unable to change about myself. I can't imagine how daunting that would be.

I am not sure why I'm writing all of this, where I'm going with it or how to conclude this blog post. I just wanted to write about the subject because of the compassion I'm feeling. At one time, I was studying to become a licensed professional counselor. I didn't complete my education in that field. And although I sometimes wish I had followed through, John thinks it was for the best. He teases me that I would have been the kind of counselor who gave my cell phone number to every patient/client and told them to call me day or night if they needed me.

Ha. I think he's probably right.

Freedom from the past ... at last!

2011-07-14T11:29:00.002-05:00

I'm reading more than I'm writing lately. Life has been busy and full. And uneventful in a good way.

Shockingly, I haven't been feeling the need to express myself all that much.

I finished three books I had been juggling in June (Decision Points - GWB, Freedom From Worry - Allen Jackson, and High on Arrival - Mackenzie Phillips). I took a book to the beach that I had not planned to read, but decided I would after a friend offered to send me a copy if I was interested. The friend who offered the book did so cautiously and with the disclaimer that they were not urging me to read it or even suggesting that I read it ... just thinking I might find it interesting since I enjoy reading about real people's lives and the author of this book was once a friend. I mulled over the offer for a few seconds before saying, "Sure. Why not?"

I told John I was going to read it and he looked at me thoughtfully. If I took a wild guess at what he was thinking (since he didn't verbalize his thoughts and I didn't ask), I would imagine he was thinking ... Are you sure you want to do that? I thought he might be concerned that reading this particular book would stir up some emotion in me that had settled. The book is Testimony, by Neal Morse. Neal attends CGT (the church I was raised in and wrote about in my own book, Breaking the Chains).

The book was a fast read for me. I finished it in a couple of days. And I enjoyed it, which did not really surprise me. Prior to the events that choked the life out of our friendship, I had always liked Neal. I stated that in my book (although I did not use his last name in print). Neal married someone who also grew up in CGT; someone I had known all my life. And that is how I came to know him. But I was leaving CGT about the same time he was "coming in" wholeheartedly. And there were some major issues that divided us. I always grieve the loss of a friend. But I have never regretted my stand. My convictions, priorities, and loyalties remain steadfastly the same to this day.

Despite our differences, I'm glad I read it. The book gave me deeper insight into someone I did not have sufficient opportunity to know well. I really enjoyed reading about his early, formative years and his family. Obviously, my memories of growing up in CGT are not compatible with the rosy portrayal he gave it. So I had internal responses in several places where I wanted to say, "You weren't there. You didn't experience it. You don't know what you're talking about."

When Neal wrote about physical healings in his family, I thought about my mom and others who were not healed; and all those who had died tragically and prematurely, in spite of having the fingers of Cornelius Mears laid on their foreheads. But at the same time, I noticed that I did not feel resentment. I felt thankful for those whose physical afflictions God chose to heal.

I don't struggle with issues pertaining to God's sovereignty. Although I don't always understand why some are healed and others are not, I am certain that God knows why. And He has a plan.

I was not surprised that there was no mention of lawsuits, abuse or recent controversy. I think that was a wise decision. I did appreciate that he didn't go anywhere near "defending" CGT in those matters or disputing the validity of victims' suffering. The book was about his life and personal testimony. And although my memories and experiences do not gel with Neal's portrayal of CGT, I acknowledge that not everyone shares my perspective. I have to (mentally and emotionally) grant Neal and others the same freedom to share their perspective that I have claimed for myself.

By the time I finished the book, I didn't feel compelled to challenge his views or his depiction of the past with a list of examples. In fact, that would be redundant. My book already does that.

I went from wanting to respond (while reading specific portions of the book) to thinking maybe I wouldn't mention it on my blog at all ... ever.

And, of course, you're reading my thoughts on the book now. So I obviously changed my mind. But the main reason I did has nothing to do with the book at all -- or challenging it in any way.

I'm sharing all this for a couple of reasons. First, I wanted to acknowledge reading the book. I actually gave thought to sending Neal an email telling him I read it and was glad I did for the insight it gave me. I decided against that. But, the truth is, I don't have feelings of personal animosity toward him or any member of his family. Although we disagree strongly on some very important matters, it is glaringly apparent to me that it isn't personal for me anymore. I try to be honest with myself in that I could have something in my heart that I'm not fully aware of. To say that I have never felt a twinge of personal animosity would be unrealistic. I resented plenty of words and attitudes while emotions were overwhelming me. But what I realize after reading Neal's book and reflecting on my lack of emotional response to it is that I don't have those intense emotions anymore. I have been set free.

I'm thankful for the life and the friends God has given me.
I'm at peace with the past.
I can finally reflect without intensity of emotion.
I can disagree without intensity of emotion.
I'm not in this battle anymore.
It's not about me.
I can rest.
I'm free.

That's what I wanted to share.

I spent many years longing to be this free. I'm amazed by how good it feels. There is a part of the healing process that is very painful. And then there is the ultimate healing, in which the pain has faded to the degree that you have forgotten how intense it once was.

God's grace is amazing!

The Todd Allen Show (Panama City Beach)

2011-07-13T10:59:00.003-05:00

"The Legends of Rock & Country Music" starring Todd Allen Herendeen and the FTD Band is an experience. I saw this show last week in PCB with friends. And I wrote about it this morning on the VisitPCB.com website. But my article is on the new (currently unlaunched) site. It won't be available until the revamped website goes live (which should be very soon). So I thought I would post the review on my blog with a few of my own pictures.

Todd Allen Herendeen has won numerous awards for his family-friendly, musical variety show. He impersonates the great musical legends of rock and country music, including Johnny Cash and Elvis Presley. This show has been recommended to me for quite a while now, and I finally had the opportunity to see it myself while in PCB over the July 4th holiday. Wow! What a fun show! Now I can recommend it myself!

Todd has a powerful, dynamic voice and the ability to sound just like the artists he pays tribute to. The first half of the show was dedicated to several legendary performers, beginning with Johnny Cash. (Todd's wife, Angel, performed a great duo with him as June Carter Cash!) I was particularly blown away by Todd's Roy Orbison impersonation. He sounded just like Roy Orbison. And that is one distinctive voice to recapture with such authenticity. Todd's son, Derek, performed Buddy Holly with style and flare (right down to his patent leather shoes) while Todd left the stage for a costume change.

The second half of the show was devoted entirely to Elvis. Todd takes the audience on a journey from Elvis' early years through his Las Vegas years and culminates the performance with some of the most memorable songs of Elvis Presley's last concerts.

Between these different eras of Elvis, there are video clips that bring Elvis to life on the screen. Todd explains that these clips are really intended for the younger members of his audience, to give them a better sense of why Elvis is considered The King. If, like me, you never had the opportunity to see Elvis in concert, this is truly the next best thing. Todd so beautifully recreates Elvis' unique sound and style that he has recently been asked to submit his vocals for a movie that is being made about Elvis.

In addition to the nostalgia and musical artistry of the show, there are plenty of laughs and audience interaction. This is a Las Vegas/Branson type of musical variety show. And it is clean, wholesome, family fun. Todd personally serenaded an audience member on-stage (this was hilarious and my favorite part of the show).

And, like Elvis, he wrapped some scarves around the necks of enthusiastic fans. Following the performance, audience members had the opportunity to have their picture taken with Elvis on-stage. And our entire party (girl's night out) assembled around The King to capture our own personal memory of the evening.

On our way out of Gulf World, we got to chat with Elvis (I mean Todd) and members of the band. They were all so warm and friendly. It's easy to see why Todd has become Mr. Panama City Beach.

A Night With Elvis in Panama City Beach...

2011-07-09T21:51:00.000-05:00

I am back home after spending another week in Panama City Beach, Florida. This time I drove down with my mother-in-law Marian (sitting on the motorcycle with Elvis). John flew down and joined us for several days. But we stayed the whole week and drove back today. We had a great time.

Thursday night we went with friends to see Todd Allen Herendeen ("Mr. Panama City Beach") at Gulf World. Todd does a very entertaining rock 'n roll show, including impersonations of Johnny Cash, Roy Orbison and Elvis. The above picture was taken after the show.

Here's a YouTube Clip of Todd doing "How Great Thou Art" as Elvis...

I got to talk to Todd after the performance and I told him that I was going to write an article about the show for Ricky and Karen's website. After driving all day, I'm so tired I can't think straight tonight. But I plan to write a detailed review in the next few days and will post a link on my blog when it's available.

I love PCB and always enjoy spending time there. When I leave, I'm looking forward to the next trip. But it is also very good to be home.

CAL-101 Update: Marian (Completion of Cycle 10)

2011-06-30T17:39:00.000-05:00

Great news today. Marian's white count came down to normal this visit. You may recall from previous blog posts that her white count went up at her May doctor's visit and up a little more when it was checked by her PCP in Evansville two weeks later. We were wondering if she was not responding to the 100 mg. dose of CAL-101 as well as her initial dose of 150 mg. But perhaps those three weeks of not taking it (while recovering from pneumonia) or possibly an infection in her body caused the WBC increase. Whatever the case may be (and all my guessing is just that; pure speculation), today's results were great.

Here are the numbers:

WBC:     5.8
ALC:      3.5
Neuts:     2.0
RBC:      4.02
HGB:     10.7
HCT:     36.8
PLT:      185

Obviously, everyone is pleased with her response and Marian will continue on CAL-101 at her current dosage. She says she feels great and only has one complaint. She has a lot of body aches and pains. After her pneumonia, she had some signs of achilles tendonitis (which can be a side effect of Levaquin). But that has cleared up. This is more of a "hurting all over" that she says is hard to describe. She has been wondering if it could be a side effect of treatment or one of the prophylactic medications she takes to protect her body from infection. It's difficult to pinpoint the cause. Many CLL patients have body aches (John does). And Cheryl (our nurse practitioner) said that it could also be associated with the study drug. It's hard to say whether it's the CLL or the treatment, since many CLL patients experience similar aches and pains prior to receiving any treatment at all. Marian did not have these aches and pains until after her pneumonia. And she began CAL-101 therapy in early October.

Another factor is also her age. She will be 79 in October. Her aches and pains have come on seemingly out of nowhere. She has always been so vibrant and youthful for her age. And she still is. If you met her, you would not guess her age. You would be more likely to guess her a decade younger. But we have been reminding her that aches and pains often accompany the natural aging process and she's been pretty fortunate to enjoy such youthful vibrancy for all these years. It's possible she would be feeling her age a little more even if she didn't have CLL. I don't have CLL. I'm 52. And I have exercised religiously for the past 21 years. But I am noticing aches and pains I never had in my forties.

All that being true, I sometimes feel a little guilty for reminding her of her age. I have a feeling I'm not going to want to hear, "You have to remember, you are almost 80 years old" all the time, either!

So ... I'm trying to listen and empathize more rather than simply chalking up whatever can't be diagnosed to getting older!

However, there is a lot to be thankful for considering aches and pains are her only problem right now. And we ARE thankful!

It's been a while...

2011-06-27T10:50:00.004-05:00

I am always reading, but it's been a while since I was so impacted by a book that I felt compelled to write about it on my blog. This picture displays my nightstand stack of current reading. In case you can't read the titles, the top book is Allen Jackson's recently published "Freedom from Worry"; Mackenzie Phillips' "High on Arrival"; George W. Bush's "Decision Points"; and "The Wisdom of Menopause" by Dr. Christine Northrup.

I wonder if you can guess which of these I could not put down and wound up finishing first. (My stack also reflects my chronological stage of life...lol.)

My favorite reading is non-fiction. I don't have a particular favorite genre other than my preference for what is real over what is pretend. I love a true story. I love history. I love biographies of all kinds. I love all kinds of spiritual books, from apologetics and theology to challenging inspirational reads. And I enjoy reading about health and fitness. I read to learn rather than to escape. That's why I'm not drawn to fiction. Even on the beach, I would rather read a biography or memoir than a novel.

There's nothing wrong with reading for escape or distraction or entertainment. Reading is probably one of the best and most productive ways to escape from reality or be entertained. But I am drawn to reality and learning. And I learn from every true story I read. I also find that I frequently relate to the people I'm reading about -- as a human being -- no matter how different the details of our lives may be. Whether it's Ben Franklin or Eric Clapton, there are just so many things about we mortals that are common to all of us.

It's always fascinated me how we can all be so unique in so many ways, and yet so much the same. Just like the human face ... We all have the same features (eyes, noses, mouths, ears, chins, cheeks, etc.) and yet we all have such different features. Our bodies are intricately the same in details of functional anatomy and yet intricately unique in composition, shape, strength, beauty, etc. I know the world is filled with unbelievers. I just don't understand how anyone can explain the amazing intricacies of nature, of the human body, of the solar system, of the ocean ... and explain it away as something that just happened from nothing without a Creator, a Designer, a Higher Power. Some don't have enough faith to believe in God. I don't have enough faith to disbelieve. But that is another subject altogether.

All four of the books I have been reading are great books. I read half of my pastor's book in one sitting. I'm enjoying it very much. But since I have heard most of what is in his book in person, in the form of weekly sermons, the material is not new to me. And I am not struggling currently with worry and fear. So, yes, I have been able to put it down.

I have learned a great deal about George W. Bush and his challenges both personally and politically. But since politics do not totally captivate my interest, I am able to read sporadically. I've been reading it for quite a while. It's a very thick book. And I have two chapters left.

I read very sporadically about menopause now. I notice something happening to me and I go to my book or the Internet to find out of it is a common symptom of my current stage in life. I had hot flashes for two and a half months, then they stopped as suddenly as they started. I haven't been having hot flashes for weeks. I got all excited and started thinking that maybe I am just one of the lucky ones who defy logic, who sail through menopause almost unaffected. Maybe I'm just done and it's over rather uneventfully. "Wouldn't that be amazing and great?"... I started to hope. And I still hope that is true for me. But after doing some research, I've discovered that this temporary reprieve does not mean that I'm done or I will never have another hot flash. It appears they can stop for months or even years and then return ... for months or years. The one thing I'm definitely learning about menopause is that it is a lot like CLL in one specific way; it is not identical for any two people.

So now, by process of elimination, you know which book I was unable to put down. Mackenzie Phillips grabbed my heart and took me with her on a life journey I could never even imagine living. I ordered her book after seeing her on Oprah because I felt such a connection to her in that interview. Although the details of our lives are so very different, I related to her in two major ways. She is a daughter who craved an emotional connection with her father which always eluded her. And she was rejected by people she loved for writing openly and honestly about her life. All the details she shared (in a loving and respectful way, I might add after reading her book) were known and acknowledged as truth in private. But it was completely unacceptable for her to reveal the truth to outsiders. Even though it was her life; her story of who she was and how she came to be who she was, she was expected to keep it all hidden as an act of loyalty. Even if through sharing she could help others deal with their own struggles, baggage, and shame, she was still expected to protect and be loyal to an image instead. I so strongly related to that pain and rejection, even though the lives we each have written about are so incredibly different.

Last night I was reading a comment thread from someone's FB page and noticed that there were comments (from people I am related to) that were blocked from my view. It was obvious. Whenever I read a response to someone who "isn't there" in the thread, I am confronted with the reality that this person has such strong negative feelings that they have gone to the trouble of blocking me. It isn't enough that we are not FB friends. They obviously do not want to see me or for me to see them even in a comment thread of a mutual friend. I have been blocked by two past friends that I once considered to be my very closest friends. And I have been blocked by a few members of my extended family. When I first made these "discoveries," I felt a pain in my heart. I felt rejection. I knew why I was blocked. I was disloyal. I made them uncomfortable. And in their view I had betrayed and hurt them by expressing my convictions and telling my story. It doesn't matter that I wrote the truth and did not embellish a single fact. It doesn't matter that I wrote in love. It doesn't matter that my book is completely void of malice or anger. It doesn't matter how carefully I protected people's identities or left out hurtful details that would make someone look like a monster. The only thing I could have done to stay in good standing with certain people was to be silent.

When I discover that I've been blocked today, there is still a sad feeling that accompanies the realization. I don't feel good about it, by any stretch. I can't say that it just rolls off my back and doesn't bother me at all. But it bothers me much less than it once did. I remind myself that just as I have claimed the freedom to share my past and what I have learned from it (for both the cathartic benefit to myself and the benefit to others who relate to me), I have to allow those who turn away from me the freedom to reject me for it. I don't have any right to expect them to accept me, like me, love me or have a desire to interact with me. Even if they are my family. There are repercussions, positive and negative, to every choice we make in life. I made a choice knowing what it could cost me. And although certain repercussions have been painful, I have never regretted my choice. I believe with all my heart that it was the right choice.

Two people, after reading my book, told me they had a problem with me writing my perspective and calling it the truth. I have reflected on that many times. The two people both had very strong personal reasons for challenging my perspective. Their perspective on specific personal events were different from mine for obvious reasons. I really did take that criticism to heart and pondered it. But ultimately I concluded that all any of us really has is our perspective. And I think I was very clear in my book that I was writing about my perspective. The events I wrote about were factual, not altered by a perspective. I was very careful with that aspect of the book. Very, very careful to substantiate every memory in mutliple ways. However, my feelings and my opinions and how I was affected and what I believed ... those are the perspectives of every human being in any given circumstance. I don't owe anyone an apology for sharing my perspective. Especially when so many readers have shared with me in writing that they held the exact same perspective and felt that I had written their story as well as my own. Some of those readers were people I had never met and still have never met. But I helped them to heal. And I wouldn't trade that for the acceptance of those who have turned away from me. Not even family members. I accept the consequences of my choices. And although I won't ever like the consequences, I have learned to live with them and take them in stride. I'm really thankful for that. It's progress. (Much needed progress, John would say.)

I stil want everyone to love me. But I know that is an unachievable goal in life. I just have to remind myself sometimes that it's not a healthy expectation for any of us.

Although Mackenzie's book includes language I don't use and experiences I can't fathom, I related to her emotionally more than one would expect. And she educated me on the perspective of an addict. I don't have an addictive personality. I very recently expressed to my husband that I just do not understand how any person (even an addict) can make the same wrong choice over and over to pursue such temporary relief and numbness when they know the lasting consequences that follow the temporary relief. His response: "That is because you are not an addict."

I was so moved by Mackenzie's life. She is not simply a celebrity or an addict to me. She is a person. We were driving home yesterday from a spur of the moment weekend getaway. I was reading parts of the book out loud to John and I got choked up at one point, reading a depiction of John Phillips teaching his daughter how to shoot up. There is something about reading aloud that makes it even more real. I stopped reading. I started to cry as I asked my husband rhetorically how any father could intentionally guide their own child into such self-destruction? It goes against nature. My heart broke for her.

I finished the book this morning. And as I read of the consequences she has faced by telling her story, I couldn't understand how her family was able to forgive all the betrayals of her choices EXCEPT the choice to reveal family secrets. Even when doing so helps so many other hurting people to feel less alone. It is so sad to me that image is such a prized possession in life. We value it sometimes more than people. I hate that. I don't ever want to be guilty of that. Even if I'm the one being tarnished. I always want a hurting person to matter more to me than how I look.

I loved the way Mackenzie described her relationship with her son toward the end of the book. I could have written this myself. It's true of the relationship I have with my own son. And it's something that brings me a great deal of satisfaction. My goal in every relationship is unconditional love and acceptance. Not necessarily approval of another person's choices; but acceptance and love unconditionally because I value the person independently of their choices. And because unconditional love is something I always remember craving. I have that now in many close relationships. I'm thankful that I have been privileged to experience it. And I think I always tried to give my son what I had always longed for.

I felt very good about identifying with Mack here...

"Shane doesn't imitate me. He's not trying to be close to me, because he already is. He can have me for anything, for whatever he needs: emotional support, advice, affection. He knows he doesn't have to do anything to get me. I'm there. I didn't feel that way about my father."

I considered leaving out that last sentence of the quote. Because in no way am I writing about this to diminish my dad. I love my dad. I recently went to see him and we had a really good visit. I left knowing this in my heart: he loves me to the best of his ability. And he has my unconditional love.

We are all flawed. Even the best of us. I think we all just want to be loved and accepted in spite of that. For some of us, it is a stronger desire than for others. And some of us (like me) have to learn through experience that we can endure rejection and be just fine. At this point, I have to be thankful for both the unconditional love AND the rejections I have experienced. You learn things from one that you don't learn from the other ... and vice versa.

I learned a lot from reading "High on Arrival" and I recommend the book. I especially recommend it if you are trying to understand the pitfalls and challenges of dealing with someone struggling to overcome addiction.

John Update (CAL-101 Clinical Trial)

2011-06-23T21:18:00.004-05:00

Today was John's regular check-up with Dr. Flinn. His blood counts are all stable and within the normal range brackets.

Here are the numbers:

John                        Reference Range
WBC 5.9                       4.6 - 10.9
ALC   3.1                        0.6 - 4.7
Neut   2.5                        2.0 - 7.8
RBC 4.37                     4.04 - 6.13
HGB 14.0                     12.2 - 18.1
HCT  43.7                     37.7 - 53.7
PLT   185                       142 - 424

He did not have to have CT scans this time. After completing the first twelve cycles, he is now able to cut back to scans every four cycles instead of every two. But there are no visible nodes.

During John's examination today, Dr. Flinn remarked about how amazing it is that this lowest dose of CAL-101 is doing for John what FCR (chemotherapy) failed to do. He has been stable for over a year with no side effects or complications. His CLL is not progressing and he is having no issues other than fatigue. Unfortunately, Dr. Flinn said there is really nothing he can do for the fatigue. It's part of having CLL.

The fatigue is not so severe that John cannot maintain his normal routine. He is up every morning before 5:00 a.m. and leaves for work by 6:00. He says he feels best in the morning, but starts to feel himself "running out of steam" by mid-afternoon. At night when he sits down to watch a little TV, he often struggles to stay awake because he is so exhausted. However, he is running on the treadmill at least three nights a week.

He does not have debilitating fatigue. He just realizes that he has to come home earlier these days and make time for R&R. He has not always been so good about that. (I am not just saying this because he's my husband. I have never in my life met anyone with John's work ethic and dedication. He is called a workaholic by many. But I don't think of him that way. He is not always at work because he loves it so much or because he would rather be there than home. He is just incredibly consciencious and hard-working. He takes his responsibility to the business and to his partner very seriously.)

John has also told me that he has occasional days when a "bad feeling" just kind of sweeps over him and he will suddenly feel kind of sick. Sometimes it goes away as quickly as it comes. Other times he feels bad all day. He says, "I guess that is just part of it. I will probably never feel as good as I used to. But I'm thankful I'm doing as well as I am." He has always had a very positive attitude. He took his CLL diagnosis in stride much better than I did initially.

It was about this time in 2007 when John was officially diagnosed. I started reading and soaking up CLL knowledge like a sponge. I quickly learned how important it is to consult with a specialist. I found Dr. Flinn through an online support group just after we had made an appt. to visit the Mayo Clinic in Rochester. I made an appt. to see Dr. Flinn in August but we went ahead with our Mayo consult in July. We mentioned Dr. Flinn to Dr. Zent and he gave Dr. Flinn the highest recommendation. I remember feeling so proud of my research efforts because I had been lecturing John about the importance of being in the care of a CLL specialist and stressing that we should not choose our physician based on convenience. We needed to drive to Nashville to see Dr. Flinn because he's one of the best in his field. There are great doctors here in town, including hematologists. But when you have a CLL specialist only a forty minute drive from your house, it doesn't make sense to go to anyone else. Dr. Zent said some of the very same things to John that I had been saying. Everything Dr. Zent told us at our Mayo evaluation confirmed things I had learned and tried to explain to John. I felt like a world-class caregiver that day. I remember thinking, "Now John will realize that I really do know what I'm talking about." : )

When we met Dr. Flinn in August 2007, we both knew we had found the right doctor. We told him we were not there for another opinion. We wanted John to be in his care. And John has been ever since. Of course, at that time, we had no idea that John's mom would soon be diagnosed with CLL as well (in January of 2008). But when she was, I urged her to establish a relationship with Dr. Flinn also. It only made sense that I would be her primary caregiver and take her for appointments and ultimately treatment when the time came.

Marian's regular appointment is next Thursday. Her WBC has started increasing again -- even on 100 mg. of CAL-101 twice a day. But she feels good and has fully recovered from her bout with pneumonia this past January. She was responding very well to CAL-101 prior to her pneumonia. But she hasn't been getting the same results since Dr. Flinn reduced her dosage. (Reducing her dosage was due to the pneumonia being a possible side effect of treatment. Both CLL and many treatment options compromise the immune system.) I'm not sure at this point whether Dr. Flinn will adjust her dosage or suggest trying something else. But I will post an update when I know more.

Topping off the perfect trip...

2011-06-20T21:54:00.003-05:00

Blankets from Photoweavers!

I had these photo throw blankets made for Lexi and Karlie from digital photographs taken during our recent trip to the beach. I just recently came across this company through Groupon. And while we were still in PCB, it hit me that this would be the perfect way to remember all the fun we had.

I let the girls choose the picture and I ordered the blankets Wednesday night. They arrived by FedEx on Saturday. I was amazed that they came so fast. And they turned out beautiful ... except that it is really weird to see your face blown up that big!

I was excited about delivering the blankets to the girls today. And it was so good to see them. I got used to being with them every day while we were at the beach and I've missed them a lot! I told them I wanted a picture of both of them with the blanket they each chose. And I told them the picture would probably wind up on my blog. I wasn't exactly sure what I was going to write, but as I began this post, I felt inspired to write to them instead of about them. So here goes...

Dear Karlie & Lexi,

I have always felt so proud and so blessed to be your aunt. From the moment you came into the world, you were more special to me than you will ever know. I have so many precious memories of time spent with you, and lots of pictures to preserve those memories ~ like our "model" photo shoots when you were little...

I will never forget getting ready for Danny and Rebecca's wedding together and doing your curls ... one spiral at a time. Hard to believe this was almost nine years ago! And I moved to Murfreesboro just one year later. The only thing I miss is being physically close to my nieces and nephews.

I am so proud of the young women you are becoming. I remember our talks about the importance of being "pretty on the inside." I have no idea if it has anything to do with anything I ever said, but you both ARE so pretty on the inside (in addition to your external beauty).

I am so thankful for the time we spent together in Florida. I hope when you look at your blankets and remember our vacation, you will always remember how special you are to me
and how very much I love you!

Your very proud...
Aunt Shari

Staying Busy...

2011-06-16T12:55:00.001-05:00

You know my days are full when I can't find the time to write on my blog!

Whether I am documenting our CLL experience for friends, family and other CLL patients;
whether I am needing to write as a form of therapy or just wanting to express gratitude;
from grappling with my fears to being overwhelmed with the joys of my life (and all the mundane stuff in between), I love keeping a public journal. And when I don't have time to write, I miss it.

After writing several successive blog posts exuding love and gratitude for John recently, he teased that I was going to need to get some new material or I would be losing readers. I told him I didn't care if I did.

One of the things I enjoy most about keeping a blog is being able to openly express my appreciation for the people I love.

After an amazing week with my sister-in-law and nieces, I was eager to write about what the trip meant to me. But I've been so distracted by other commitments and activities ever since getting home last Saturday night, I just haven't had a chance. Thankfully, they have all been fun distractions (including having my daughter-in-law and grandsons spend the last two nights with us).

Right now I need to finish cleaning up the remnants of fun left by my one, four and five-year-old munchkins. I need to work out. And I need to do some web writing so I don't lose my wonderful new part time job! I have another busy week coming up. Volunteering tomorrow. Father's Day dinner with the kids Sunday. And an old friend is coming to visit me from Monday through Wednesday of next week!

So ... I don't know exactly when, but I'll be back to my routine soon!

Ask me if I had a great time...

2011-06-12T11:50:00.000-05:00

...And I'll just show you this picture.

I think the smiles on our faces speak for themselves!

These are my two oldest nieces, Karlie and Lexi, and my sister-in-law Cheryl (who is more like a sister than a sister-in-law). We added some treasured memories to our "treasure chest" of existing memories this week!

These lyrics always remind me of John coming into my life...

2011-06-08T15:50:00.001-05:00

...And he sent you along like a summer day
With a blue-sky smile on your funny face
And a bird flew by singing eveything's gonna be, ok yea
So we laughed all day with the man in the moon
And we thanked the good Lord for the afternoon
'Cause he showed me His love by sending me you
And it's ok now
Everything's ok
(From "Everything's OK" by Chris Rice)

Having a great time in Florida. Listening to this CD in the condo as I get ready to go from the beach to dinner with my sister-in-law and nieces. Savoring every moment and getting tears in my eyes thinking about how God has blessed little ole me with the world's best husband and the happiest life I could ever imagine.

Thank you, Sweetheart, for all the ways you show your love for me.
I am one lucky woman.
Blessed beyond anything I could ever deserve!
And I will tell anyone who will listen (or read)!
I LOVE JOHN HOWERTON!!!

Taking Time to Make Memories!

2011-06-04T11:56:00.002-05:00

I doubt I will be blogging at all this week. I am going to the beach with my sister-in-law and teenage nieces. And other than a few Facebook updates and pictures, I'm determined to take a break from being so connected. I want to enjoy every minute of our girl time. The older we get, the more we realize how precious our time is!

I am so excited about our trip. And I'm sure there will be a blog post soon after I'm home. (John ordered a new laptop for me yesterday and it will be waiting when I return.)

Yesterday was Brittany's birthday. She would have turned 26 years old had we not lost her in 2003. We think about her and talk about her a lot. I have written about her on my blog before and I wrote about her in my book. But it dawned on me this morning, after sharing pictures of her on Facebook yesterday, that I should have a picture of her on my blog. So I'm adding one to the side margin. It is one of the last pictures taken of her. She graduated from high school the Friday before she died.

We know we will see her again. But we will always miss her until we do. The first year John and I were married, I had a collage of portraits done (from pictures of Brittany) by my very artistic friends, Terra and Jessica...

The poem in the middle was written for the collage by another friend of mine. It says:

Until again we meet,
Where breath is obsolete,
You adorn our souls,
And greet the One we seek

Take time to enjoy each moment.

Make lasting memories.

And love with all your heart!

CAL-101 Personal Experience / Phase I Study

2011-06-01T17:59:00.004-05:00

The other day I was reading about the first published results of the CAL-101 Phase I Study which my husband is enrolled in. The article is "CAL-101 Update: half full glass." As I was reading, I realized I had some answers to some of the questions posed (based on personal experience) and thought it might be helpful for me to comment on my blog. My remarks are never intended as medical advice. But I have benefited (as a patient advocate for my husband and mother-in-law) from the sharing of other patients' personal experiences. And I consider it my personal responsibility to share our experiences for the benefit of others.

Background Info (in case this is your first time reading):
My husband entered the CAL-101 study for previously treated/relapsed and refractory patients after receiving no remission from Rituxan alone and then six rounds of FCR (+ experimental Lumiliximab). The hope was that Lumiliximab would enhance FCR and result in a longer remission. The addition of Lumi did not produce those results and that trial was discontinued. But FCR has been the Gold Standard CLL treatment for quite a while and Dr. Flinn's expectation was that John would get a decent remission from it. He was diagnosed in 2007 and his biggest issue was bothersome bulky lymph nodes throughout his body. He would not have required treatment if not for his lymph nodes. His WBC was high for a normal person, but not that high for someone with CLL. And his only symptom other than lymphodenopathy was fatigue (which was tolerable).

John sailed through his first infusion of Rituxan without suffering any of the potential reactions. But when we left, he passed out cold in the elevator from tumor lysis syndrome. With the help of other people in the elevator, I got him back in the doctor's office waiting room where he passed out a second time (sitting down this time). This was one of the scariest moments (perhaps THE scariest moment) of our entire CLL journey. I really thought I was losing him the second time he lost consciousness. But he revived quickly and started making jokes to Dr. Flinn the minute he came to. We practically flew John (Dr. Flinn, the attending nurse and myself) by wheelchair to the ER. He was monitored for several hours and was just fine. So the weekly Rituxan infusions were continued. Unfortunately, Rituxan only worked on his blood and did not produce any lasting relief from the lymph nodes.

The next year John tolerated the swelling, occasionally taking small doses of prednisone for temporary relief. We were trying to avoid chemotherapy for as long as possible. I had read about all the possible risks and side effects (toxicity, damage to his immune system) and even the possibility of transformations from treatment. I was not gung-ho to do FCR and I knew that while it produced great remissions for some, there was no guarantee. When John decided he wanted to have this treatment, I tried to be as upbeat and positive as possible. But I knew there was a chance he could subject his body to that toxicity and not get results.

While he did get some reduction of the nodes during the six months of chemotherapy, they did not completely shrink and they began swelling again within two months of the last infusion. That was a pretty discouraging time. He had failed the Gold Standard CLL treatment. Now stem cell transplant was on the table. (And to say I was not excited about this option would be an understatement.) I had done a lot of researching, investigating and reading personal experiences. I knew SCT was not a magic bullet. Yes, there are some exciting success stories. But there are some very serious complications and risks that can greatly reduce quality of life. And sometimes patients die from complications of the transplant itself. After John's very disappointing lack of response to FCR, I didn't have the highest of hopes that he would be one of the great success stories. (I am not a pessimist, but definitely a realist when it comes to treatment choices. Since John was first diagnosed, I have taken the responsibility for doing the research and learning necessary to make sure John at least makes informed decisions.)

It was around that same time that I was starting to read about a new drug called CAL-101. I had made a CLL friend online (CLL Christian Friends) who also had the struggle John had with lymphodenopathy. He was actually in worse shape than John. He had relapsed from previous treatments and was told (if I'm remembering correctly) that he probably would not see the end of 2011. He was facing the probability of stem cell transplant being his only hope when he was accepted into the CAL-101 Phase I Study at OSU. And immediately after starting CAL-101, he began improving and getting relief from not only the lymph nodes but from the severe fatigue that had necessitated his early retirement from a job he loved. This friend (also in his fifties) was sharing about his dramatic results on CLL Christian Friends. And he even took the time to email me and share his very honest opinion about transplant. He strongly urged me to pursue getting John into the CAL-101 trial and provided me with contact numbers and other info.

I wasn't sure if Dr. Flinn was participating in the same trial. I knew he was involved in CAL-101 clinical trials as combination therapy (with Rituxan and chemotherapy drugs). But my gut feeling was that John should do CAL-101 alone. He had already received Rituxan twice without benefit. And he had just failed chemo. So why infuse drugs into him that we already knew had not proven helpful to him? I ask lots of questions and express my own opinions at our visits with Dr. Flinn. It's never bothered him. He answers my questions thoroughly and never makes me feel like I'm taking up too much of his time. I've cried in the exam room and we've also had a lot of laughs. I have never met a better doctor and I love his staff. So I didn't want to go anywhere else. But I was willing to go anywhere if it meant John being able to try CAL-101 alone. Before our next appt. with Dr. Flinn, I had an appt. lined up at OSU with Dr. Byrd (just in case CAL-101 alone was not an option with Dr. Flinn). I can't stress strongly enough, I had no desire to be in the care of anyone other than Dr. Flinn. We love Dr. Flinn. But I felt that John should try CAL-101 before considering transplant.

At our next appt., I brought up the CAL-101 trial with Dr. Flinn and told him I had contacted Dr. Byrd's office just in case we needed to travel to get John in it. He said that he was participating in the same trial and, if that's what we wanted to do, he would try to get John enrolled. We waited about three weeks and finally received word of his acceptance into the trial. Right after he was enrolled, this trial was closed to new CLL patients. I did not know (until reading the initial findings published on CLL Topics) that there were only 54 patients enrolled in this study. John started CAL-101 (May 2010) at the lowest dose (50 mg. twice a day) and has gotten excellent results with -- so far -- no toxicity or side effects. I am aware that this dose doesn't work for every patient. But it has for him. CAL-101 has been a miracle drug for John so far.

Currently:
Other than still battling some fatigue as the day progresses, John has no symptoms. He has made adjustments (like coming home earlier), but he still works six days a week unless we go out of town. And he is back to running on the treadmill regularly. His lymph nodes started to reduce within days of his first dose. (We saw a difference after the first day.) They continued to shrink to almost normal size and have remained stable ever since. He is now in the rollover phase of the study (after completing the first 12 cycles) and will continue on CAL-101 as long as it keeps working.

Details relating to the trial results:

The median age of the study group is 62. John turned 57 in March. He was diagnosed at 53.
Some of the other patients in this study have been more heavily treated than John.
John does not have the 17p deletion. He has all good markers with the exception of being unmutated (which is considered a poor prognostic marker).
John never experienced the rise in white count that many patients initially have on CAL-101.
John has not had a subsequent bone marrow biopsy, but at the beginning of the study his bone marrow was only 20% infiltrated. (My mother-in-law is in another CAL-101 study in combination with Rituxan. She is 78 years old and was previously untreated. Her bone marrow was 80-90% infiltrated at the beginning of treatment and a recent BMB showed that her marrow infiltration has been reduced to 30% after the first six cycles. Since there was no mention of bone marrow status in the abstract cited by CLL Topics, I thought this might be useful information to share.)

My mother-in-law started CAL-101 at the 150 mg. dose (twice daily) in October 2010. She developed a severe case of pneumonia in January (diagnosed as bronchitis by her primary care physician). Of course, we now know that 24% of patients in the first trial also developed pneumonia. So she will be included in that statistic in her study group.

Marian is fully recovered (after two weeks in the hospital, including three nights in ICU) and is doing well. She says she feels great and is back to her normal routine. (She is a very vibrant and youthful 78!) Dr. Flinn took her off CAL-101 until her pneumonia ordeal was over. I think she missed about three weeks of medication. And she resumed CAL-101 at a reduced dose of 100 mg. (twice daily). At her last visit, it appears that the 100 mg. dose is not working quite as well as 150 mg. Her WBC has started to increase again. Her next evaluation is at the end of June and I will give an update on her status at that time.

For any CLL patients reading this, please feel free to ask me any questions you may have either here in the comment section or by private email. My email address is ShariLHowerton@aol.com. I am always more than happy to communicate with other CLL patients and caregivers. I enjoy hearing from readers!

As always, I hope this information is helpful to someone.

Eight Years!

2011-05-30T22:14:00.005-05:00

Eight years ago tonight I talked to John on the phone for the first time.

In case you don't already know, we met through match.com. He never could have found me because my profile was hidden (unless I saw someone who interested me and shared it privately). But the other reason he never would have found me was because he wasn't even looking at profiles. A friend talked him into signing up and creating a profile. But, once he did that, he did nothing but wait for someone to contact him. And he was pretty ho-hum about the whole thing. I, on the other hand, was a compulsive "shopper" in that I enjoyed reading profiles. However, I was only interested in Christian men who did not smoke and I didn't want anyone to see or contact me unless I initiated it. (I did not want to be "shopped.")

On May 29 I saw John's profile and sent him mine, along with an introductory email. I also sent him a picture. He told me later that he had pretty much decided not to renew his subscription to match because even when he received emails of interest, he didn't feel inclined to pursue them. He'd been set up on a few dates as well and he wasn't sure he was even interested in dating. But (I later learned) when he read my email and saw my picture, he had a feeling there was something different about me. And he responded right away. (I, of course, had no idea at the time what his frame of mind was or that he had any such feeling about me.)

On the night of May 30 we were talking back and forth online (through instant message). I type 100 wpm and John uses only a few of his fingers. He couldn't keep up with me. So he sent a message with his phone number and: "Call me!" I was living at my dad's at the time and my dad had already gone to bed. So I went downstairs and called him. He had a good sense of humor and there was interest on both our parts. And after a fairly lengthy conversation, John said, "Well, I guess we should meet in person at some point. When do you think we should try to do that?" I said, "What are you doing tomorrow night?" And the rest is history.

May 31, 2003 was our first date. We met at Famous Dave's in Hermitage. He asked me what was good (since I had been there and he hadn't) and I suggested we share The Feast. He tells people to this day how I ordered a meal that was served on a trash can lid on our FIRST DATE. LOL. (Nobody who knows me is one bit surprised.)

I love to remember that first date. John has a silly side and he was as much himself that night (being goofy) as I was (being a foodie). He listened so attentively and laughed so easily. I knew I had made a really good friend. I could picture us hanging out. But I didn't have a clue how important he would become in my life or how quickly our relationship would deepen. Every day after that date he wrote me sweet and funny emails. And he called me every night. By our second date the following weekend, I was smitten. If you've read my book, you know the story. My love and adoration for my amazing husband has only grown ever since. And I have never stopped feeling like Cinderella. I am really, really blessed.

John came home early this afternoon and spontaneously suggested we take a drive. I was expecting him early but wasn't anticipating going anywhere. So I quickly put some makeup on and we hopped in the car. We wound up at Arrington Vineyards (gorgeous place). And then we went to J. Alexander's for an early dinner in Cool Springs. On the way home, I was "thinking out loud" and telling him how unbelievable it still is to me that he is my husband. But not only that. Of the two of us, my life has changed the most since we've been together. Life is different for both of us in that we are finally so happily married. But when I moved to Murfreesboro to be with John, I'm the one who started fresh (and John teases me that I'm the one who needed to). I didn't know anybody in his world eight years ago. I remember thinking I would never connect all the names and faces of the people I was constantly meeting. But today it's very different. Not only are all of his friends my friends; these days I even introduce John to people he doesn't know on occasion. (Which always makes me smile.)

When this time of year rolls around, I always enjoy remembering our first date; how I didn't have a clue that I had just met the man of my dreams or how much my life was about to change. I will always remember John's facial expressions that night. There is an expression he has when he's listening intently and slightly amused. He raises his eyebrows and his eyes open wide. I saw that expression a lot during our first (hours long) dinner date. (Maybe that's why it has stayed with me so vividly.) I remember thinking how genuine he seemed. And I was right. He is such a genuinely good man.

Every time I see that expression on his face, I am taken back to our first date ... to that first clueless night when I met God's best for me. I am so thankful for the last eight years (the most rewarding and joyful years of my life).

Comments on Perfection and My Book...

2011-05-27T07:58:00.004-05:00

I received two comments on older blog posts (from someone I don't know) earlier this morning. The person stated that he attended my former church in Chino over twenty years ago. Twenty years ago would have been just prior to the move to Tennessee being announced. He didn't say if he moved with the church or not. And I might be able to remember him with more information. But with nothing other than a first name, I don't remember who he is. Rather than go back to the old posts to respond, I thought I would bring the conversation to the top of my blog so that more of my readers could read it. And this is why:

I am asked frequently by current Christian friends, what in the world was the basis for the belief that one had to reach perfection in this life to go to heaven (because the Bible is clear that salvation is a gift by grace through faith). I can never really make anyone understand how certain scriptures were twisted to make it seem glaringly true to me all my life. If your thinking has never been conditioned in this way, it really is hard (almost impossible) to fathom. Because I had one of those conversations in response to that question as recently as last week, I just wanted to share these blog comments to help my current friends understand the mindset a little better. David, the person who commented on my blog this morning, says that he has not attended church in seven years, but he clearly remains faithful to the "truth" of what he was taught in the "Body of Christ" churches I was raised in.
********************
The first comment:
Anonymous has left a new comment on your post "Be Perfect, therefore, as your heavenly Father is ...":

It's sad that you chose to leave the Body of Christ.

Hopefully you haven't strayed so far from the truth that it would prevent you from meriting a resurrection and getting another chance.

I have to post as anonymous since I don't have any of the accounts to post otherwise, but my name is David, and after 47 years in the Body of Christ (including attending the church in Chino when I lived in CA), I know there is no other truth in this world.
********************
Anonymous has left a new comment on your post "Healing from Spiritual and Emotional Abuse":

I'm not familiar with commenting on these blogs, but I left a comment on one of your older posts. I wasn't sure if you would see it or not because of how old it is, so I'm leaving you a comment on this newer page as well. I also left a comment about CGT being a cult on the website about cults that re-printed this page. It didn't show up, so I don't know if they will post it or not.

I don't know if we ever met at CGT in Chino since it's been over 20 years since I moved to Kentucky, and then Indiana. I just came across the site about cults that is promoting your book and re-printed what your blog says. That site had the URL for your blog. That's how I ended up here.

I'm very sorry to hear that you feel the way you do about the Body of Christ, and I have to admit that I am very hurt to hear that anyone who attended such a wonderful church that gave it's people the incredible amount of freedom that CGT did could ever call it a cult. I've seen how other churches in this world operate, and CGT is about as far from a cult as you can get. Yes, some of the teaching was strict, but the scriptures are strict when it comes to killing the flesh daily as the Apostle Paul tells us we must do in order to overcome sin. If we have no further obligation than the cross and repentance of our sins, and striving to reach perfection is a false gospel, then the Bible has to be false, because there are over 20 verses in the New Testament that tell us we are to reach perfection. Jesus himself tells us in Matthew 5:48 "Be ye therefore perfect, even as your Father which is in heaven is perfect." I can't see how it could be any more clear or straightforward than that.

I don't mean this in a vindictive way, but regarding your book and public outcry against CGT, please remember that that the only way to offend Jesus is by offending his people. Even though I haven't attended church for about 7 years myself now, I would never speak ill of it, if for no other reason I would not want to offend the many good people and children of God that do attend it. In fact, I try not to speak ill of any church regardless of who they are because there are good people in every church that will someday hear the call to come out of her my people, and I wouldn't want anything I said be an offence to them and cause them to miss out on the truth some day.

If you think I'm brainwashed, trust me, I'm not. I've questioned a lot of things I've been taught, and I've searched the scriptures, and my heart many, many... MANY times. In the end, I've always found that regardless of what I wanted to be true, the things our pastor taught us from that pulpit on Sunday mornings stood every test I could give it, and it always proved to be the truth.

While you probably consider me a cultist or something because I still believe the teachings we both learned are true, and I still believe that the King James Version Bible is the word of God, and is infallible, you also know that because of that very same teaching that I love you as my sister in Christ, and that I will still pray for you.

God bless you sister.
Your brother Christ
David
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My response:

Dear David,

Thank you for taking the time to comment on my blog. I'm sorry that you feel sad for me. And I know the sadness you are feeling is very genuine because you believe I have lost my way and strayed from the truth. But you need not feel sad. While it is true that I have left the group professing to be THE Body of Christ in the earth, I have not left God. My faith is 100% in the blood of Jesus Christ -- His sacrificial death on my behalf and His resurrection -- for my salvation. I know you believe that His work on the cross did not accomplish my salvation and is not sufficient in itself to get me to heaven, but the Bible is clear that there is no other way. As far as whether or not I still "merit" another chance or a resurrection, the answer would be no. I merit nothing. God's grace is unmerited favor. If the gift of eternal life could be gained through merit, it would be a wage and not a gift. And not one single person other than Jesus would be in heaven. Because not one single person in the Bible was declared perfect other than Him. The Bible is filled with flawed, inadequate people -- not perfect followers.

I am so thankful to have been delivered from "the truth" you believe I have strayed from. And my hope and prayer for you is that you will one day be delivered from it as well. It is a false gospel. It is not the truth. In fact, many of the people in CGT today don't even claim they believe in the perfection doctrine anymore.

May I ask why you no longer attend church when you believe so strongly that God requires you to be perfect? The reason I ask is because this is one of the sad realities I observed throughout my life that helped me to see the idolatry of the group. I witnessed so many people stray from God, but always remain uncompromising in their loyalty to the group and its teachings. Even in your comments, your sadness is all about my leaving this group and its truth. You believe my ultimate salvation is in jeopardy because I have strayed from this group and its beliefs. This conveys that the group and its beliefs are paramount in salvation; even more important than the cross. Your words of concern confirm that. That is idolatry. There is nothing more important than the cross.

As far as the scripture you quoted, I now see that verse in context. The entire chapter is addressing the love we should have for others. It is not addressing salvation or how to obtain salvation.

Yes, I do believe that it is important how I live my life. I believe that obedience is the strongest evidence of my faith. I believe God expects me to love others, to love even my enemies, to return good for evil. And I want my daily life to honor Him and glorify Him. But I do not believe my works are going to be the determining factor in whether or not I make it to heaven. My works are the evidence of my faith. But it is faith that overcomes the world. I am saved by grace. I can add nothing to the cross. However, I can demonstrate my gratitude for what Jesus has done by responding to His love and mercy with a life that honors Him. I do try to crucify my flesh. I do try to overcome my selfish nature. I do make an effort to resist temptation and not sin willfully. To be perfectly honest with you, I make a much greater effort to honor God in my daily life since leaving CGT than I ever did while I was believing those teachings. A true transformation has taken place in my heart and in my life since I have believed the true gospel.

My book tells my own personal story of deliverance and redemption. I didn't write it to speak 'ill" of anyone. And anyone who has actually read the book knows that it was written in love and not in malice. I have a story to tell. I have a testimony to share. I wanted to document that testimony in writing. I began writing from the desire to help others. I had no idea how much God would use it for my own healing. But He has. If you read my book, you will find more answers to your questions (including scripture references). However, because I spent nearly a year of my life putting it all into the book, I don't feel compelled to explain myself any further in this response. I've moved on.

Charleston! (Part Three)

2011-05-24T22:59:00.006-05:00

Sunday was our last full day in Charleston. We had planned to return to Toast again for brunch. But because it was Sunday, it was totally packed. The wait was just too long. So we walked a little further to Joseph's (another restaurant that had been recommended to us). We still had a thirty minute wait. So Anita and I walked across the street to explore a church cemetery.

The guys waited patiently on the steps and I read Joseph's menu online while we waited the last few minutes. What captured my interest most was their sandwich menu. I had decided (since it was 11:00 by the time we were seated) that I was going to have an early lunch instead of a late breakfast. I had my sandwich all picked out. And then I found out that lunch isn't even served on Sunday. Boo Hoo! But I have to tell you, what got me over the hump of my disappointment was our server, Adam Breakey. This guy should be doing stand-up. His jokes were funny and he had a dry delivery that reminded me of Jim Gaffigan (one of my favorite comedians). He really cracked me up. And he was also a great server. No matter how good the food is (or isn't) a server can make or break your dining experience. I love a server with a personality; someone who isn't just doing their job but enjoying the interaction with their customers. I will be honest. Although the food at Joseph's was not my favorite of the trip, Adam was definitely my favorite server because he was so witty and fun. Adam, I hope you're reading this. I'm paying you a high compliment because we had excellent servers at several restaurants. But you were the most fun! (And you were the only one who wrote down your full name for me!)

I had my heart so set on a certain sandwich that I wasn't really in the mood for breakfast, so nothing sounded all that great to me. I'm not an omelet person. I didn't want pancakes. And I hated to order an ordinary "traditional" breakfast with no flare in a place like Charleston. So I decided to try the Spinach and Artichoke Benedict (since I love creamed spinach). It was rich. And it was actually very good, just a little too lemony for my particular taste. John had an omelet and he said it was just as good as the one he'd had at Toast. Mark and Anita both had pancakes.

Mark had the GIANT pancakes, which were much more than he could possibly finish. But they made a great picture. I think John was the only one who cleaned his plate.

After breakfast, we drove to the Fort Sumter National Monument and walked through the museum. We got there a little after noon and the next ferry left for the island at 2:00 or 2:30. Instead of waiting, we decided to drive over to Kiawah Island. And I was so glad we did. We drove out to The Sanctuary Resort and explored. We walked out to the beach, and then the four of us sat and talked while Anita and I enjoyed a frozen drink at the poolside Loggerhead Grill. It was such a relaxing way to spend the remainder of our last afternoon.

We drove back to the hotel for a little down time before going to dinner at Magnolias.

On our last night, John and I both had a Caesar Salad, followed by the Parmesan Crusted Flounder. It was served over jasmine rice and shrimp pirloo with sweet corn, tomato and asparagus salad, lump crab and a lemon beurre blanc sauce. It was delicious. Mark and Anita ordered one flounder and one buttermilk fried chicken and had half of each. I tasted the chicken and it was just wonderful. But I was glad I ordered the flounder. It was fresh and mild. The sweet corn was cut right off the cob and so crisp. I loved the corn and asparagus together. It was a great blend of flavors and the rice was creamy.

(Our service at Magnolias was satisfactory, but not impressive.)

We went back to the room after dinner, thinking we would just pack and go to bed. But John suggested we walk back over to Coast (the first restaurant we had eaten at) to have one last drink and listen to some live music before calling it a night. We had such a good time. The guitarist was Graham Worley and we thoroughly enjoyed his playing. It was a romantic ending to a wonderful long weekend in a very charming city.

In the words of our boat tour guide, "I wasn't born in the South, but I got here as fast as I could." : )