Treatment Week #6

It's hard to believe we have come to the final week of chemo and February is just a week away. When John began this clinical trial on September 8, 2009, February seemed so far off in the distance. And after that first awful weekend when he could not get out of bed for days following Week #1, I remember feeling pretty overwhelmed with fear, anxiety, and just plain sadness that my sweet husband had to endure all of this. The swelling of lymph nodes, the needles into his veins and his bone marrow, the nausea, the fatigue. Watching someone you love go through all of this is hard. I know it's harder on him, but it hasn't been an easy road for me as his wife because I love him so much and I would just give anything to be able to spare him this experience.

However, God is in charge (not me) and God has not chosen to spare John or me the CLL experience. So we accept what we cannot change and try to focus on our blessings (which are many) and walk the path God has laid out for us with the courage only God can provide through His love and grace.

The most challenging days for me, so far, include those early months following diagnosis, making the decision to proceed with this course of treatment and then watching John endure the treatment. When you are dealing with an incurable diagnosis, treatment decisions are very taxing and stressful. You try to determine how to best "manage" things to get the best quality of life and the longest survival. You can't know if you're making the right decision because you don't know the outcome or the individual side effects that will result. (When you have the hope of a cure, you just go big guns all the way and there is no difficult decision to make because the risks are worth taking for the potential result of "beating" the cancer.) But it's a different ball game when that isn't the goal of treatment.

I think the decision to proceed to chemotherapy was perhaps more difficult for me than it even was for John. And that's because I'm the one who has done so much reading and knew all the reasons so many patients put it off as long as possible. You hope and pray for a long watch and wait. You hope to avoid chemotherapy as long as possible. Treating CLL is an art as much as a science because disease progression and response to treatment can vary so greatly from one patient to another. The more I've read and studied the disease and various treatment options, the more I've learned that reality. Everything CLL is so individual and there is definitely not a one-size-fits-all solution.

I would read about patients who managed to avoid chemo and stay in "watch and wait" mode for ten years or more. I wanted that so badly for John. We did manage to postpone it for two years post diagnosis, but John's nodes became more and more of a problem for him. They were most noticable to others in his neck, but they were getting huge in other places too (abdomen, groin, under his arms). When CLL proliferates in the blood, the white count and lymphocytes can be very high and yet treatment is not indicated as long as the patient remains asymptomatic. But when it accumulates in the lymph nodes rather than the blood, all kinds of new issues come into play. In addition to the discomfort of nodes that get so large they become painful, they can affect organs and arteries if allowed to grow out of control in the abdomen.

In John's case, his bloodwork has never been the problem. The only time his white count would show any significant increase was when he was taking steroids. And his blood has held up very well through treatment. His white count and neutrophils have dropped into the dangerously low zone after the last two rounds, but they have come right back to low-normal within two weeks both times and hopefully they will after this last round as well. But his lymph nodes, although much smaller, are still there. You can't see them sticking out anymore, but you can feel them. They are stubborn and more challenging to control than the blood. I knew that going into treatment.

In order to be considered in complete remission, all the nodes have to be reduced to less than 1 cm in size (normal). No matter what the blood and marrow results are, if any of the nodes remain larger than 1 cm, he will only be considered in a partial remission. And although his disease may not progress for a long time, Dr. Flinn explained that partial remissions typically do not last as long as complete remissions. And because of the stubborn presence of those nodes after five rounds of treatment, though I'm trying not to, I must admit that I feel a bit disappointed. It doesn't look like a complete remission is on the horizon to my human eye. But I remind myself constantly that God is in control and nothing is too big or challenging for Him. We are in His hands.

I know of patients whose lymph nodes began to return within a year of treatment. I try not to think about that possibility. Dr. Flinn has also told us about one of his patients whose nodes just continued shrinking for a whole year following treatment. So I know that anything can happen. And to project myself into imagined future scenarios is just not helpful. The future is unknown for us all.

In spite of my ever-present concerns, I am excited that this will be the last week of infusions for this course of treatment, and hopefully whatever remission John gets will hold for a long time. I'm so looking forward to him feeling better as he gets further away from the toxic effects of the chemo.

In sharing the details, I realize that I could sound a little more down than up; because there is a heaviness to this subject of incurable cancer that I feel even as I type the words. But I'm not down and I'm not heavy-hearted. I'm just not in denial. I want to write about these details because I know it helps others to more fully understand the physical/emotional battle of both the CLL patient and the CLL caregiver. And those who read my blog who are in the same battle (in either role) can relate to everything I write. Sometimes all you need to know is that someone else knows exactly what it feels like to be in your shoes.

As I mentioned in a previous post, one of my goals for the new year was to live more fully in the preesent moment. Through the publishing of my book and all the rewarding feedback I have received, God has given me greater closure on the past than I have ever had. I can't fully explain it, but for me it has been nothing short of miraculous. I have also experienced a new sense of freedom and liberation from "baggage" that I have carried for years. And I am enjoying that freedom tremendously. I know that only God could do that for me. He knew exactly how to accomplish it. And it was a long process. This CLL journey that John and I are on will no doubt be a long process of accomplishing many of God's purposes in our lives as well. My goal is to stay focused on Him, trust Him more fully than I ever have, and live each day to the fullest; touching as many other lives as God permits and pointing others to Him. God has blessed my life beyond my biggest dreams. And even my worst fears are diminished when I reflect on all that God has already done in my life. I'm thankful that John has tolerated treatment well and he is improving. I believe we have many wonderful years ahead of us. And even though there are a lot of conflicting emotions to deal with on this journey, God always gives me exactly what I need in the moment to overcome.

I know a lot of you read my blog to keep up with how we are doing and what is happening. And every now and then, I want to address our current circumstances to keep you informed. So I'm going to do that even if it means, in the moment, I trigger a bit of my own emotion. As I have written this morning, I've certainly felt the emotion of dealing with illness and uncertainty. But there is never a moment I don't feel God's presence and His love for us.

I will definitely let you know (on my blog) how John holds up this week.


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