Tuesday, January 31, 2012

It's All Good!

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.

Tuesday, January 24, 2012

Best Disney Trip Ever!

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

Sunday, January 22, 2012

My First Disney Trip as a Grandma

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!

Friday, January 13, 2012

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

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.

Tuesday, January 10, 2012

Great Article on CAL-101 Phase One Study

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.

Friday, January 6, 2012

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

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!