It has been a full nine months since I started my fourth type of chemotherapy drug. My last bone marrow biopsy was in December of last year and revealed nearly 50% of the marrow was leukemia ridden, which is not a good long-term prognosis, thus leading my team of oncologists to see how much leukemia remained in my blood and bone marrow with this recently approved new treatment.
So a few weeks ago I had a battery of tests done including drawing blood from my arm, a CT scan to measure the size of my lymph nodes (a typical place leukemia likes to concentrate), and then a bone marrow biopsy, where they take a wine corkscrew looking gizmo and twist it into my back/hip area and into the bone and then untwist it back out to capture a portion of the marrow to study under powerful microscopes. Fortunately, there is a medicine that I get to take which causes me not to feel much of the twisting of the screw while it is happening, but my wife Kate was there by my side, holding my hand and trying not to grimace or cringe as she watched the procedure. It is not a terribly fun hour for us.
After the first week, we got the blood counts back…
They were normal.
We were cautiously optimistic. A week after that, the CT scan results showed no enlargement of the lymph nodes, and we were excited. We waited another two weeks for the most important results: the marrow biopsy. When we got the first half of the results, they read that the doctors were unable to see any leukemia in the marrow. We were ecstatic. Finally, the last part of the results was posted and revealed that there was a barely recognizable sign of leukemia at the molecular level. The doctors said that they were ready to declare the overall results of this new chemotherapy: A COMPLETE RESPONSE!
Kate cried. My older children, mom, brother, and sisters celebrated the good news. A complete response. But I wasn’t really sure what that meant, both medically and personally. Was it like a nuclear term that we would “completely respond” to North Korea? Or was it a Red Cross term that we would provide a “complete response” to the victims of the latest hurricane? It just sounded so foreign to me. I realized that the oncology department could not be happier because they were defeating the leukemia at all the measurable levels this time around, which has never been the case over the past 4 years of my journey against cancer.
Do not get me wrong, I was celebrating and thrilled, but confusion remained. Specifically, it was that I really didn’t feel any better despite the new prognosis. In fact, I felt guilty because I thought I was supposed to feel better since there was no leukemia to be seen. It has been an unusual week for me emotionally and physically trying to make sense of the miraculous news the complete response insinuates without the physical response I expected.
Then last week, I had my monthly appointment with my palliative care doctor and he shed light on my confusion. “Scott,” he said, “it's like your body has been through a category 5 hurricane; the last 4 years we have put into it a number of toxic chemicals to try and beat back the leukemia, and for the first time, we have beaten it into an almost invisible state, dormant and quiet. But, even though it’s a sunny day, and the weatherman is calling for sunny skies for the next few months, the fact is that the destruction from the category 5 hurricane is still going to affect your day to day energy and physical well-being.”
Thank God for Dr. W and his insight and interpretation. It made me feel understood as well as providing the imagery to hang my hat on when I try to explain how I am feeling. I have many well-wishing friends and family who hear “complete response” and conclude, “Well, that’s great! The leukemia is gone! You beat it and now are back to normal.” Not exactly. As Dr. W said, I will continue to experience a new normal as long as I remain in this fight.
Right now, however, we thank The Lord and His Son for our answered prayers: that the leukemia has been knocked back to a level almost undetectable! That is the best news we could pray for, as there is no cure for CLL-17P. But like those few courageous hurricane hunters who fly into the eye of dangerous storms to learn all they can about them, it is worth pointing out that I am on the forefront of oncology versus cancer, and perhaps now it is realistic to hope that in my lifetime there will be a cure. I hope so for my children's sake, and my grandson's sake, but if not now, then I will keep my hope alive for a cure soon to help so many others, which is why I am involved in multiple extra tests and trials so that people who come after me can benefit from what doctors can learn from my case to help treat leukemia better in the future.
To everyone who is pulling for me in this fight and victory, I want to say thank you for the prayers and please keep them flowing, because they are working. And I will keep doing my part physically, mentally, and spiritually to battle every day. I appreciate all those who are walking this journey with me through the sharing of the updates through this blog or in person. We love all of you and will continue to keep hope and faith alive.
Amen and amen.