The CLL/CAL-101 Journey Continues...

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.


justme said…
I remember your early CLL days very well. They were very similar to mine; I was terrified! I am very thankful John continues to do so well on CAL-101, and that my CLL isn't quickly progressing. But, as you said so well, "I'm even more thankful that our hope extends beyond this life!"
Shari said…
Sally, I roll my eyes and laugh at myself every time I remember that first introductory post I wrote on CLL Christian Friends. I guess I will probably always hold the record for longest introduction! LOL. Thank you for your friendship, prayers and support! I have made so many great friends on this journey. It's a club nobody wants to join, but becomes so instantly thankful for!

Thanks for your response to my post. I am also very thankful you are in an ongoing state of watch and wait! Hope and pray you are one of those who never needs treatment!
Deb Light said…
I'm so happy we met through this journey also Shari and so thankful to God that John is doing so well on Cal-101.What an Inspiration you both are.Post an update on CLLCfriends when you get a chance.Yes,I think you did have the longest and most tear jerking intro ever but Baby look at you now!!And John now!God is good!!
Love Ya,
Deb Light
Shari said…
Thanks, Deb! I will definitely post an update this week on CLLCF. Marian has her checkup this coming Thursday and I will update status on both of my adored patients.

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