Thursday, March 31, 2011

Marian's Bone Marrow Biopsy Results

We found out today that Marian's bone marrow has been reduced from 80-90% CLL infiltration to 30%. She began treatment with CAL-101 the first week of October. I fully expected an improvement in her marrow considering the great response in her blood and lymph nodes. But I had no idea how much improvement we could expect.

This is obviously great news! Her next regular checkup is in May.

If you check my blog and there isn't a recent update, always remember that no news is good news.
John and Marian are both doing well, which means that there isn't much to report on my blog. But I always post their status after their bi-monthly checkups.

John is approaching the completion of his first twelve cycles in April. However, he will not stop treatment at the end of this first phase. He will continue taking CAL-101 for as long as it keeps working. I'm hoping that turns out to be at least another thirty-forty years. : )

Or a cure would also be nice.

Ephesians 5:1-14

Podcast Link:
Hope of the Beloved (Sermon by Danny Bryant)

I just finished listening to this sermon. Of course, I make a point of listening to Danny's sermons because he's my son. But that is not the only reason I enjoy them. I always get something out of them.

There is a point in the sermon where Danny talks about the things we suffer in this life increasing our capacity to uniquely enjoy heaven. I know it is true because I've already had a taste of that in this life.

I had one of those days today where I couldn't stop thinking about how blessed I am and how good God has been to me. I thought about my life as it once was and my life today. It still seems surreal at times. I never could have imagined my life being so good, so happy, so stable, so tranquil. God's plans for me were better than my dreams. I often contemplate that because we all tend to think we know what is best for us. But only God actually knows what is best. And even though He takes us through difficult places (that sometimes feel as if they will last forever), He knows what He's doing and He has a purpose.

At the end of May I will have known John for eight years. My life changed dramatically when I met him. He has been a huge blessing and a gift that I could never take for granted. I am always thankful for him and for our happy marriage. But today was one of those days when I was just overwhelmed with thankfulness all day long. I couldn't stop thinking about all my blessings. I had lunch with a bunch of friends and I told one of them that it was hard to imagine that I might not have ever met John and if I hadn't met him, I would have missed out on all of the close friendships that God blessed me with by bringing me to Murfreesboro. It feels like I've been here forever. It feels like I've known my friends here forever. It's hard to imagine any other life.

I ran some errands after lunch and couldn't stop thinking about what a wonderful life God has given me. When I got home I just stopped in the hall as I walked through my house and thanked God out loud, with tears streaming down my face. I don't deserve His goodness. I am so unworthy. But He has shown me so much mercy and He has been so faithful to provide for me.

If I had never known what it felt like to be unloved, unappreciated, devalued; it's possible that I might have taken John and the life God has given us together for granted. I might not have appreciated my blessings as fully as I do without the contrast. But because of the things I've suffered, my joy is hundreds of times greater. And I know that the little bit of heaven I feel like I have right here on earth cannot begin to compare to what awaits us when EVERYTHING that's broken is restored.

I loved the way my son communicated that our choices in this life are tied to the hope we have in Christ. As my hope in Christ has become deeper and stronger, my desire to obey and honor Him in all of my choices has grown deeper and stronger. I am an overflowing cup of gratitude.

Saturday, March 26, 2011

A picture is worth a thousand words?


A friend tagged me in this Facebook picture. The year was 1989. I'm not sure of the month. So I was either thirty years old or about to turn thirty. It's interesting what you remember specifically about a certain age.

When I look at this picture, I feel as if I don't know this person. It's not the eighties hair. I remember thinking I needed as much volume as possible and getting regular perms for years. I remember the clothes and even that necklace. I remember my friendship with Kelly and bits and pieces of her special day. But when I look at "me" in the picture, there is a disconnect.

Although none of us likes the negative aspects of aging, I wouldn't go back to being this person "for all the tea in China," as they say.

So, what specifically do I remember about the year I turned thirty? Interestingly enough, the first and most vivid memory I have of that year is that my dad declined an invitation to celebrate my thirtieth birthday with me because I wanted to drive to the beach for dinner. It took an hour to drive to Newport Beach from where we lived. And I wanted to celebrate by going to my favorite restaurant. He said that he would go if we went to Cask 'n Cleaver (a restaurant that was five minutes from his house), but he wasn't driving an hour to the Chart House. I remember the exact words that followed his "no." He laughed and said, "I'm not married to her."

Why is it that memories like that are etched in your brain? If we forgive, why can't we just delete the memory? I rarely think about my thirtieth birthday these days. I'm not harboring resentment or nursing an old wound. It's just a fact of my life. When I think about my thirtieth birthday, I remember my dad's response to the birthday invitation. I guess I always will. One of the realities of my life is that my dad was never willing to be inconvenienced. What's changed in the 51-year-old Shari is my understanding that this was not about me. It wasn't personal. However, 30-year-old Shari experienced it as deeply personal.

That memory is fairly benign and one that I laugh about now. There are more intense memories that I wouldn't share on my blog because it would be inappropriate. I left many details out of my book when it came to the deepest pain of my past life because I did not want to hurt or humiliate people, nor did I want to be self-serving or self-indulgent. I truly have forgiven (and not just my dad). But the whole point I'm trying to illustrate is that the memories don't just disappear because we forgive.

We can't wipe our brains clean of memories when it comes to cruel words and actions. Especially those situations and relationships where the wounds have been inflicted and reopened repeatedly. When I revisit memories of being treated with contempt, cruelty and indifference, the pain of those wounds resurfaces even though I believe I've moved past them and truly forgiven. It's kind of like herpes zoster, which lies dormant until it is reactivated by something; stress or a compromised immune system. Memories are triggered by surrounding events. Ironically, my fortieth birthday holds intensely painful memories of conflict and rejection that were far more devastating than my thirtieth birthday. I don't think about those events very often. But there is a pathway in my brain that connects two major events; my fortieth birthday party and the painful rejection that came in an email the night before. The memories will be forever intertwined.

What this means is that forgiveness is not a one time event that removes all past pain. We must choose to forgive again and again, every time the memory is triggered, every time the pain is brought to the surface. If we have forgiven, we want God's best and God's mercy to come to the person who wronged us. We don't want them to suffer. We say in our hearts: I release you from owing me anything. I set you free.

But does that mean we run back to the person or the turbulent relationship? More and more I believe the answer to that question is no. Sometimes we have to surrender a person or a relationship to God and step back. Whether the step back is temporary or permanent depends on many variables. Every situation is different. Sometimes there comes a realization that the relationship we once pursued and longed for will never be possible. What is broken cannot be fixed by us. We stop trying to fix it.

I never had peace about certain broken relationships in my life until I came to the realization that I cannot fix what is broken and God does not hold me accountable for someone else's heart. As long as I truly forgive (and continue to forgive when the memories resurface), holding no bitterness in my heart, I am free to choose some relationships and not others. I will never have my guard up so high that my heart is closed to genuine healing and restoration. But I am not interested in a facade or simply being willingly used by someone for their own purposes. That's not a relationship.

I remember my Christian counselor telling me once that there is suffering that glorifies God and there is suffering that does not bring any glory to God because it is enabling ungodly behavior. That stuck with me. Much of my life was spent enabling ungodly behavior while thinking I was doing something noble and self-sacrificing and loving. That thinking was reinforced by my environment and my spiritual conditioning.

This whole post was "inspired" by an old picture from another time, a time when there was a lot of pain in that young woman's life. I see it in her eyes. You probably don't because you don't know what her life was like. The surface of a person's life never tells the whole story. I have several friends who have told me repeatedly that I lived in denial and they knew it, but they couldn't say it while I was still choosing it. I tell them there is a difference between being in denial of your circumstances and trying to rise above what you feel powerless to change.

My coping mechanism has always been to look at my blessings instead of my problems, to remind myself of those less fortunate than me instead of those with seemingly "greener grass." I remember one of the valuable tools my dad gave me early in life was this statement: "Shari, a lot of people spend their lives trading one set of problems for another set of problems. If they'd just work on the problems they have, they'd be better off. Learn from other people's mistakes and don't have to make them all yourself." I remembered those words and I tried to live by them. That coping style served me so well that I stayed in an abusive relationship for 27 years, determined to accept the problems I had. I now realize that I played a role in the toxicity of my life. I was also unhealthy. I enabled as a form of self-protection, not as self-sacrifice. I had to change once I saw my role. Change was painful and scary.

The last eight years of my life have been the polar opposite. I am blessed beyond words. God has redeemed my life in ways the young woman in that picture could not have even imagined. My dreams were not as big as God's plans were for me. I've tasted freedom and joy. I finally know what it's like to be loved and valued. Which makes me much less likely to settle for artificiality in any relationship. I'm not needy like I used to be. I'm not looking for love and approval anywhere I can get it. I'm no longer trying to be whatever someone else wants me to be to fit into their definition of lovable. That's one of the ways I know I'm healing from the past.

If you're in the middle of turbulent times, be assured that God has a plan for your life and He will not abandon you. There were times in my life that I did not believe God saw or cared or would ever rescue me out of certain circumstances. But He did more than rescue me. He delivered me. He redeemed me. And He is healing me continuously. I'm not special. He will do that for you too. Sometimes you just have to wait for Him when His timing isn't what you'd like it to be.

In hindsight, I see how every painful experience has helped to develop my character and deepen my trust in God. I'm thankful for the painful experiences because through my own challenges and difficulties, I am better equipped to help other hurting people. I am more compassionate because of what I've gone through. I am more forgiving because I recognize my own need to be forgiven.

Did the locusts eat a few years of my life? Oh, absolutely. Or at least it seemed so at the time. But none of those years seem wasted compared with what I have gained.

God works ALL THINGS for our good. Believe it.

A Quick Trip to the Beach...

John and I flew Southwest to Panama City Beach for a few days this week. They have some really good fares if you plan ahead. This trip was originally planned for John's birthday weekend, but we postponed it a week because John needed to be at work the weekend of his actual birthday (for a sales event). We left Sunday morning and reluctantly came home Wednesday night. We had a great time.

I love taking toe pictures at the beach.

We love PCB. We went there for New Year's Weekend with friends of ours and had so much fun. We have always gone to Destin in the past. And Destin is beautiful. But I actually prefer PCB. And the new airport is a big plus -- especially with Southwest flying there.

When we go to the beach we like to relax and do nothing. We work out in the morning and eat very little during the day, saving our calories for dinner. Sunday evening we ate at The Back Porch in Pier Park. We shared seafood nachos and a fried seafood combo platter of shrimp, scallops and crab cakes. Monday night we ate at Saltwater Grill, which was the food highlight of the the trip. I had an early bird filet with a small lobster tail add-on. John had Grouper Imperial. Grouper is one of John's favorites and he always lets me taste his food. Grouper doesn't normally blow me away. It's just not something I order with all the other choices available. But this Grouper was incredible. I want to say it was the best I've ever tasted. And it was. But I am teased all the time about saying something was "the best I've ever had." So let's just say, on a scale of one to ten, it was a definite ten.

The third restaurant we tried was Pompano's. We probably won't go back. They had excellent lobster, but everything else was just okay.

On our last day we went to The Boatyard for lunch since we would have to head for the airport before dinner. Our friends had taken us there for lunch New Year's weekend. And I had fried shrimp that time, which was excellent. But my friends ordered a sandwich called Konrad's BLT (Bacon, Lobster and Tomato) on grilled sourdough (with banana peppers and a spicy remoulade sauce). Ever since tasting that sandwich, I have looked forward to going back and having one of my own.

We snapped a few pictures on the balcony our last night. We considered changing our flight right up till the last minute. We wanted to stay.

But we knew we needed to come home.

John had to get back to the dealership and I had a lunch date to celebrate a friend's birthday. : )


Links:
         The Back Porch

       Saltwater Grill

             The Boatyard

        VisitPCB.com


I see more trips to PCB in our future.

Wednesday, March 23, 2011

Another Book Recommendation

Son of Hamas: A Gripping Account of Terror, Betrayal, Political Intrigue, and Unthinkable Choices




Son of Hamas: A Gripping Account of Terror, Betrayal, Political Intrigue, and Unthinkable Choices





Reading this book gave me a better and a more personal perspective on the conflict in the Middle East. It gives perspective to the religion of Islam as shared by someone who practiced that faith until he began to read and compare the Bible to the Quaran. It is the story of a Muslim who fell in love with Jesus and publicly converted to Christianity despite all that would cost him personally.

As I read this book, I was amazed at God's sovereignty and how He selects individuals for His divine purposes. God's protective hand covered Mosab throughout his life, long before he found Jesus. There was a journey to that faith that would help many others in the telling of his story.

This is the kind of book you don't want to put down. It's a fast read. It is compelling, enlightening and thought-provoking. And it is timely in the world we are living in.

Friday, March 18, 2011

Let me tell you about my favorite dish at Parthenon Grille. . .

Several friends have asked me lately why I stopped writing restaurant reviews. There's more than one reason. First of all, I started writing a book and that project consumed my writing passion for almost a year. By the time I finished that, I was out of the routine. My good friend Mike Pirtle had left The Post for a new endeavor. And he was my contact person. I had no idea if the new editor was even interested in my reviews. I assumed not and never pursued it. Secondly, in order to write new reviews, one has to keep trying new places all the time. I knew I could not review the same restaurants again and again. John and I do not continually try new restaurants. We develop favorites and tend to stick with those most of the time.

We eat at Parthenon Grille more than any other restaurant in town. We have been regulars for years and we love going there. We enjoy the food very much, but it's more than the food. It's the people. They treat us like special guests -- like royalty, actually -- because we've been regulars for so long. Addison (who almost always takes care of us) has all of our preferences memorized. If you've ever heard me order, then there is no need to explain. I am a special request person.

I have a lot of Greek in my blood, but I never knew any of my Greek relatives because my dad's full-blooded Greek father died when my dad was very young. I was never exposed to any of my Greek family or Greek culture. When I told Tula and Kathy that, they unofficially adopted me. So I now feel as if I AM part of a Greek family. I love that. (After watching My Big Fat Greek Wedding, I realized that I am a typical Greek woman in many ways. I am passionate, expressive, emotional, opinionated and have had a love affair with food as far back as I can remember.) I got the big dose of these genetics in my family. My brothers were more introverted like my mother. I kind of stood out in my family as the emotional one, the one who needed to talk about everything, etc. And perhaps that is part of my special attachment to my Parthenon family. I think I might have been considered "normal" if I had grown up in their home.

It takes me a while to get to my point, but there was a specific reason I began writing this particular blog post. Months ago, Angelo (owner/chef/Kathy's husband) featured a special that instantly became my very favorite Parthenon dish. I ask (beg) for it regularly. But since it's a special and not a menu item, I can't always get it. The ingredients are not always on hand. 

Late this afternoon, Addison posted to my Facebook Wall: "Imperial tonight at the Pnon. = )" And I was dying because we were already preparing dinner at home. I exclaimed to John, "Oh, man! Angelo's making MY special tonight. I wish I didn't know."

Here is a picture of the dish. I've only had Mahi Imperial, but tonight he is serving it with Grouper (John's favorite fish). Let me describe what you're looking at...

Fresh Grouper stuffed with a blend of crab, scallops, calamari and Imperial Sauce, served atop Parmesan Cream Spinach and drizzled with a butter cream caper sauce. The first time this was the special, John ordered it and I did not. I wasn't sure I would like it and I knew John would let me taste his. I SO regretted not ordering it. And the next time it was offered, I jumped at the chance to have it. I finished every bite (even though I was miserably full by the end of my meal).

I just want to give my local readers a heads up. If either the Mahi or the Grouper Imperial happens to be the special the next time you dine at Parthenon Grille, you simply must try it. It is out of this world. It's the best seafood dish I have ever eaten. I'm thinking about getting a petition started to make it a regular menu item. So, if you try it and agree with me, let me know so I can make sure to get your signature. 

Another favorite of ours is the Salmon Mascarpone appetizer. I cannot oversell it. I can usually take or leave smoked salmon. And I only eat wild salmon; never farm raised. Parthenon serves wild salmon and it is the best. The smoked salmon is served with warm pita triangles and a scoop of herbed mascarpone cheese. The plate is drizzled with olive oil and the salmon is sprinkled with thinly sliced rings of red onion, capers and parmesan cheese. You want to spread a little mascarpone on the pita, then layer onion, capers and salmon on top. It is not only delicious, it's a healthier appetizer than my other favorite (Parthenon Dip). I love being able to do something good for my arteries that is so enjoyable. I highly recommend you try this appetizer, as well as the Imperial.

Unfortunately for me, I got Addison's message after John and I had already started preparing an early dinner. Truth be known, with the slightest encouragement from John, I would have scrapped our dinner and headed for Parthenon. But my more pracitcal better half is not as given over to his passions as I am. So we stayed home.

Addison, I need to give you my cell phone number so you can text me next time. John said if I had read the message a half hour sooner, you might have seen us tonight.

Thursday, March 17, 2011

Marian Update (CAL-101 - Completion of Cycle Six)

Marian saw Dr. Flinn today for her regular appt., labs and ct scan results. (She had scans yesterday.) She has completed six 28-day cycles on CAL-101 (plus weekly Rituxan infusions for the first eight weeks).

Her scans and lab work were both extremely good. Lymph nodes are all down. Blood counts in normal range. Her WBC is 8.5, ALC of 6, platelets are 226, HGB is 12.7 and HCT is 39.3%. These are great numbers.

The only surprise today is that Marian will have to have another Bone Marrow Biopsy tomorrow. We were not expecting that. But the pharmaceutical company has added the BMB to this study (at the end of six cycles) for patients who had substantial bone marrow involvement at the beginning of treatment. They want to know if the marrow is responding as well as the blood and lymph nodes are. You may remember that her marrow was 90% infiltrated with CLL cells prior to treatment with CAL-101. I'm sure that percentage has been reduced, but the only way to know how much is to do another biopsy.

I hate that she has to have another BMB, but she has been curious about her marrow's response and once the results are in, she'll know. It will be very encouraging if CAL-101 has impacted her marrow as effectively as it has her blood and lymph nodes. But actually any improvement will be positive and encouraging.

So we will be back at Sarah Cannon tomorrow for the procedure. She did really well with the first one and hopefully she will have the same good experience tomorrow. I will update my blog with the results once we get them.

Monday, March 14, 2011

Robbed but Restored (Joel 2:25)

Every once in a while I have a flashback to something a Lipscomb professor said to me in 2003. He was one of my psychology professors and I was in several of his classes. The one I was attending at the time was a course focusing on marriage and the family. I had been open about my life and past struggles (both with my professors and in classroom discussions). But on this particular day I was giddily showing him my engagement ring. I remember telling him that I could hardly believe the way my life was falling into place and and how loved and happy I finally was. I had not expected God to bless me this way -- or for such blessings to come quickly, if they ever came at all.

Sometimes in a conversation like that, the other party will respond with a word of caution or even a cynical remark. But on this occasion, my professor responded simply by quoting a scripture to me:

“I will repay you for the years the locusts have eaten . . ." (Joel 2:25).

(Joel 2:26 goes on to say, ". . . and you will praise the name of the LORD your God, who has worked wonders for you. . . .")

Although I had read my Bible from beginning to end, that was not a passage that had lodged in my brain. But I have never forgotten it since. And over the last eight years, I have thought of it countless times. God really has done that in my life. And my marriage to John is the most obvious example. But there are many areas of my life where God has restored that which was lost. Even in little things that would seem inconsequential to Him.

Saturday I was invited to go prom dress shopping with my nieces, my sister-in-law and one of their close friends. We had the best day together. And I was so thrilled to be included. I always love spending time with my nieces. But sharing this little milestone event in Karlie's life was extra special for me because I missed out on all the normal milestone events of jr. high and high school. I never went to a football game, a dance or the prom. Participation in school events such as these was strictly forbidden (by the cult), along with a lot of other very normal, wholesome activities that most people take for granted as rites of passage.

At this stage of my life, I am not torn up over having missed out on going to the prom. It isn't what I consider a monumental loss. After all, it's not as if I would be a much better person today if I'd gone to the prom. But I understand how some of my friends still feel robbed of a normal childhood. And, as an aunt, I am absolutely certain that I enjoyed shopping with Karlie for her prom dress far more because of the contrast between her teenage years and mine. I am not living vicariously through her. I am very content to live my own life. But I sure am savoring the joy of watching both my nieces fully live and fully enjoy their teenage years. And I feel very blessed to share these milestones with them.

It's another way God has restored what the locust has eaten. I like the word "restore" much better than "repay." God doesn't owe me something He is compelled to repay. But He is faithful and loving and merciful. He restores.

My focus today is no longer on the locust or the years that were eaten because I have experienced the "repayment" -- the restoration -- of God.

Watching Karlie try on dresses, sharing her excitement and enthusiasm, Cheryl and I completely agreed that it was way more fun to be having this experience as her mom and aunt than it ever could have been to do it ourselves. I felt no sense of loss for myself. I felt only gratitude, joy and delight.
. . . and thankfulness.

God is good.
To think I once believed that the little details of my life didn't matter to Him.

Wednesday, March 9, 2011

Colonoscopy #4

I had my fourth colonoscopy this morning. That's a lot of colonoscopies for a 51-year-old. Normally, these screenings begin at age 50. But it was recommended to me that I start having them in my late thirties because my mother died of colon cancer very young (she was 48 when diagnosed and barely 49 when she passed away).

Some people avoid the dreaded colonoscopy because it sounds so unpleasant. But if you have ever watched someone die from colon cancer (like I have: on a daily basis - up close and personal - for seven months), the colonoscopy isn't scary. I don't even dread it. Oh, I don't enjoy the prep day. I doubt that anyone does. But it's a small inconvenience in comparison to the possibility of not discovering something deadly until it's quite advanced. Colon cancer is one of the most treatable cancers when diagnosed early and one of the deadliest when it's not.

I got another clean report today. My colon is healthy and clear. So far, not even a polyp has shown up. Perhaps I did not inherit a genetic tendency. But I will still follow my doctor's advice and have the screening more often than the average person. Something will eventually get me, but it won't be colon cancer. Because colon cancer is so easy to avoid if you just don't avoid the screening.

I didn't have any anxiety or worries about today's procedure. I fully expected a clear report. But it's still nice to hear the doctor say, "Everything looks great. See you in five years."

Getting a colonoscopy is no big deal. The procedure itself is a breeze. You get over the inhibition part after the first one. I am so comfortable with my doctor at this point that I don't give it a second thought. I felt nothing. It didn't seem like I was completely out because I could hear the conversation between the doctor and nurses. However, I must have slept through most of it because I am fascinated by watching the monitor and seeing what the doctor is seeing. If my eyes had been open, I know I would have looked at it. But I have no recollection of doing so. The only time I remember watching the monitor was during my very first scope for only a minute or two.

For anyone in the Nashville area, I recommend Dr. Michael Santi SO highly. He is a colorectal specialist with a wonderful bedside manner. I have been in his care since 1997. Yes, I could get my colonoscopies right here in Murfreesboro. We have plenty of great doctors here. But I don't mind the drive. I'm already comfortable with him and if I ever needed any kind of colon surgery, I can't imagine going to anyone else. He is that good. Of course, convenience has never been my highest priority when selecting a doctor.


Anyone who has done it will tell you that the worst part of a colonoscopy is the day before; the prep. You are restricted to clear liquids. And your colon has to be completely cleansed (this is the ladylike way of describing it.) But this time even that seemed easier than in the past. I took two little pills at 10:00 am, two more little pills at noon, then at 4:00 I began drinking eight 8-ounce-glasses of Colyte solution every ten minutes until half the jug was gone. In the past, I had to drink the WHOLE jug. I hated that.

The intense "cleansing" period lasted only about two and a half hours (not all day). And drinking the liquid every ten minutes -- what I hate the most -- was just a little over an hour. By 7:00 pm I was soaking in a hot bath, contemplating a cheeseburger from Five Guys once I could eat again.

Funny thing is, after the colonoscopy, I didn't even want a cheeseburger. In fact, I couldn't imagine putting a greasy cheeseburger into my freshly cleansed colon. It just seemed like a bad idea. I had a little Sprite after the procedure. Then I had John drive me through Starbucks for a nonfat latte on the way home. We went to Publix to pick up a few things and I bought everything I thought I might want. But then I got home and really only wanted a piece of sourdough toast and coffee ... for now. I think it was wise not to eat a big meal right away. My stomach is rumbling like crazy after just eating toast.

The little Dulcolax pills prior to the liquid seemed to make the cleansing process faster and easier. I never even had a stomach cramp. The absolute worst part was drinking the Colyte. It makes me feel bloated and just a tiny bit queasy. But even that was no big deal. It's a little salty and kind of weird-tasting. But not awful. And drinking it fast, with a straw, helped.

Several friends told me their doctor let them drink sixty-four ounces of Gatorade with a bottle of Miralax in it. So I asked Dr. Santi about doing that next time, since it sounds like it would taste better than Colyte. He said that I could if I wanted to, but in his experience, the Colyte does a more efficient job of thoroughly cleansing the colon and added: "The only thing worse than going through the prep once is being sent home to do it a second time." Apparently this has happened. I said, "Oh, forget I asked."


I'm getting all my medical evaluations this month and next. I went to my GYN for an annual physical this month. I've had my mammogram and now my colonoscopy. And next month I will have my lipids and hormone levels checked.  I'm not sure my GYN included a CBC on her orders, but I will request that from my regular doctor if she hasn't because CLL is also a part of my family history. I don't worry about being diagnosed with it. But if I ever am, it won't be a shock to me (like it is to most people). I know I have a slightly greater chance because my dad has it.

I don't really worry about my health. I believe with all my heart that God has ordained the number of my days and whatever is in my future is a part of His plan. The closest I ever come to worrying is when I think about being elderly and unable to take care of myself.

I hate the thought of my kids having to take care of me physically in old age. I don't want them to ever have to prioritize their lives around me or my needs. I only want to enhance their lives, not add stress to their lives. I don't like the word "burden" because I know they would never view me that way. But I like being a parent who isn't needy, who doesn't lay guilt, and who makes no emotional demands. I have always been determined to have a life of my own and not live through my kids. And when I do spend time with them, I want it to be about doing something for them, not them doing for me. When I spend time with my grandsons, nieces or nephews, my desire is to make them feel special -- not for them to make me feel special. I think this is an even bigger deal to me because I've witnessed the reverse and it's the last thing I would ever want to be. And that is probably why I sometimes fear getting old and dependent. It isn't about losing MY independence. It's the thought of my needs being imposed on others. And that is just another reason why I really do try to take good care of my health and get those screenings.

On the other hand, I know there is a cycle of life that God has put in place. And if it is His will for me to one day be physically dependent, His grace will be sufficient for me AND my caregivers. I have made a lot of friends online who are battling chronic incurable illness, and I know one of their biggest emotional struggles is needing to be cared for when they want to be giving instead of receiving. And most of us will experience both sides of the equation at some point in our lives.

I probably think about my elderly years a little more than the average 51-year-old. I'm not sure why I do. I just do. Rebecca sometimes teases me that I'm way too young to be thinking about my nursing home years. And she's probably right. It just doesn't seem that far off to me. Life is going fast.

I'm not exactly sure how I got from my colonoscopy to my declining years. After all, I did get a very good report and I'm feeling great.

I guess I'll bring this one to a close before I segue into my funeral arrangements. LOL.

Monday, March 7, 2011

Redeemer Podcast

Love Never Fails ~ Danny Bryant (click on this link to listen)

We went to hear Danny preach yesterday and the passage his message focused on was
1 Corinthians 13 (love).

I have been reading "Same Kind of Different As Me" - which has turned out to be a story of the perfect love described in Matthew 5:46-48.

This morning my daily devotional scripture was Matthew 5:46-48.

There have been so many times in my life when I knew God was focusing my attention on a certain theme because it was coming at me through many different sources. I love it when that happens.

Matthew 5:48 was always quoted to me (in the past) to "prove" that we had to reach literal perfection in the flesh to have eternal life. I cannot begin to count how many times I heard people ask how any Christian could explain away that commandment. And whenever I would read it, I would have to contend with the baggage of a false gospel. But because of the book I've been reading, when I read that scripture this morning, the understanding of the verse was crystal clear. If you read the book "Same Kind of Different As Me" you will see the most beautiful example of that perfect love displayed in Deborah Hall as she reached out to and truly loved the homeless. That directive was not about salvation or meriting eternal life. That chapter describes the kind of love we should have for our fellow man if we are in Christ. It is the way we are to love. Not simply loving those who love us. It has nothing to do with the rules we keep or the number of hours we spend sitting in a church service. It's all about love that is outside ourselves in focus.

I will never struggle with the meaning of Matthew 5:48 again.

In Danny's sermon, the scripture was from another location in the Bible, but it was the same message:
Love that is outside of ourselves in its focus.

Saturday, March 5, 2011

Reading on a Rainy Day

Same Kind of Different As Me: A Modern-Day Slave, an International Art Dealer, and the Unlikely Woman Who Bound Them TogetherI am reading a book recommended to me by a friend. The book is "Same Kind of Different As Me" by Ron Hall and Denver Moore.

I'm only 38% of the way through it (I know precisely how far I am in the book because I'm reading the Kindle version), but it has already touched me so much that it has stolen me away from the other books I was simultaneously reading. My favorites always do that. There will be one of three or sometimes four that I won't be able to put down and will wind up reading it all the way through before I get back to the others. Some books just grab your heart and this is one of them.

This is the book's description:
Meet Denver, a man raised under plantation-style slavery in Louisiana in the 1960s; a man who escaped, hopping a train to wander, homeless, for eighteen years on the streets of Dallas, Texas. No longer a slave, Denver's life was still hopeless-until God moved. First came a godly woman who prayed, listened, and obeyed. And then came her husband, Ron, an international arts dealer at home in a world of Armani-suited millionaires. And then they all came together.

But slavery takes many forms. Deborah discovers that she has cancer. In the face of possible death, she charges her husband to rescue Denver. Who will be saved, and who will be lost? What is the future for these unlikely three? What is God doing?

Same Kind of Different As Me is the emotional tale of their story: a telling of pain and laughter, doubt and tears, dug out between the bondages of this earth and the free possibility of heaven. No reader or listener will ever forget it.

Less than halfway through this book, I felt compelled to buy the audio version for John (he only listens to books on CD while he drives). His birthday is Friday. He is difficult to buy for. And what he really wants, I can't afford to buy for him. (A 1959 Les Paul.)

This is the kind of book you want to share. And I highly recommend it to you.

This quote resonated with me in a deeply personal way this morning:

"I cannot see into a person's heart to know his spiritual condition.
All I can do is tell the jagged tale of my own spiritual journey
and declare that my life has been the better for having followed Christ."
~ Ron Hall

Thursday, March 3, 2011

CAL-101: Completion of Cycle 10 (John)

At this point in John's CAL-101 treatment, he is only having to be seen and have labs done every other month. He has CT scans the day before and then we get the results when we see Dr. Flinn. Since he has been responding so well for months now and not having any side effects, there has not been much "news" to report in recent weeks. But I do enjoy posting the positive results and providing some detail for CLL patients who are researching online, looking for other patients' experiences.

John's WBC had gone up slightly (from 7.5 to 9.2) at his last check up. I know that is such a minor fluctuation and still within normal range. For anyone with CLL, 9.2 is a number to be very thankful for. But you just don't want to see an increase while undergoing treatment. I did not worry about it, but I hoped we would not see another slight increase today. And we didn't!

John's WBC today is 6.4. And all his counts are within the normal brackets. His Absolute Lymphocytes are 2.2! To give you an idea of the contrast, John's ALC at diagnosis was 26. It went above 50 at one point (after using prednisone to temporarily shrink the nodes, which increases the white count).

The CT scan showed that John's nodes are all stable. The major reduction has already been accomplished and stability is great news. I've read that after the lymph nodes have gotten very large, it's unlikely they will ever return completely to normal. And there is some ambiguity as to what truly is normal since nodes are throughout the body and not all the same size even in healthy people. John's are within a few millimeters of being normal. And none of them are visible anymore. They have not been visible for months.

At John's next appointment (April 28), he will have completed all twelve cycles of this trial. Since he is responding and tolerating the drug so well, he will "roll over" into a new trial and continue taking CAL-101. Our research nurse, Mihaela, told us today that John is currently her only patient on 50 mg. Most patients are currently on 100 mg. Some who began at the lower dose had to go up in dosage. And some who started higher have come down in dosage. (Marian started at 150 mg. and is now taking 100 mg.)

Dr. Flinn told us that he's now had a few patients develop shingles while taking CAL-101. So he added Acyclovir (antiviral) as a prophylactic measure against the possibility of viral infection or activation of herpes zoster. John is already taking Bactrim prophylactically against bacterial infection. But thus far John has suffered NO infections, side effects or toxicity from CAL-101. Thank God!

Currently, John's only real CLL symptom is that he often feels extra tired. But in spite of that he is still working six days a week and has even started to exercise again recently. So it's not the kind of fatigue he could be experiencing or that other CLL patients are battling.

This time last year, we were coming to grips with John having failed chemo (FCR) and it was pretty discouraging (as I've already shared). This year he's taking a little capsule morning and night and doing beautifully.

Marian's next scans and office visit will be March 16th and 17th. She is also doing quite well.