Bloodwish

There has been much focus on finding a bone marrow donor match for me. It makes sense because the sole reason I am going through all of the nausea and discomfort of the chemotherapy treatment is to destroy my diseased and dysfunctional bone marrow and replace it with someone’s healthy bone marrow. I named my blog Marrowish because of this need–a wish for marrow–and to remind myself to live a marrowish life–living a full life, right down to the marrow.

It amazes me how, because of my need, so many of my friends and acquaintances have volunteered to donate their bone marrow, knowing that the odds are way against their marrow being a match for me. Some have even wanted to set up a bone marrow drive in my name. Amazing.

I registered for the national bone marrow registry a long time ago. In fact, I had forgotten about it until my leukemia diagnosis. I do not remember why I did it. As far as I know I have never known anyone with leukemia. In fact, I was not really too sure what leukemia really was when I was diagnosed with it. And still, after all these years on the list I was never called. I suspect most people on the registry never are. That being said, I still encourage as many people as possible to register. Not for me, but for those who do not yet know that they will become inflicted with the disease…especially the children.

But there is also another, more immediate need where your help will be put directly to good use: donating blood.

During my first phase of treatment the chemotherapy drove down not only my white blood cell count, it also drove down my red blood cell and my platelet counts. As a result, I regularly had to receive both red blood cell and platelet transfusions. I suspect the same will be true during the subsequent phases. Each time I had a transfusion, as I watched the nurse hang the bags of blood or platelets and hook their lines up to my catheter, I felt a little guilty and wished that I had donated more blood. I am pretty sure that I will never have an opportunity to donate blood again.

So, if you are looking to have an immediate impact on someone’s life, perhaps an injured service member, or an unfortunate commuter, or even a scared, young leukemia patient, please donate blood and donate it regularly. Many of you certainly already do. Thank you. For those who have not, please do. I guarantee that, even if you hate needles and get queasy from the thought of it, you will still feel good about it after you are done. It is a noble cause. In fact, I would not be able to survive without someone with O+ blood taking the time out of their busy schedule to donate their blood to me. There are many, many others who are in just as much need, if not more. And I pray it never happens, but you never ever know–some day you may be the one in need.

If you’ve ever donated blood before, or if you donate blood any time after reading this post, please leave me a comment to let me know so we both can feel good about it together.

My Doctor’s Explanation

Question: “Why was my diagnosis changed to Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis?”

Doctor’s response: Let’s focus on the bilineage part first. White blood cells can be of myeloid or lymphoid origin. When [Kurt] came to the hospital he had a high white blood cell count with mostly lymphoid cells. The high white count favored an acute leukemia. The first and most likely diagnosis is acute lymphoblastic leukemia (ALL). We then performed a bone marrow biopsy and flow cytometry that showed that 77% of his bone marrow cells were of lymphoid origin and that 1-2% that appeared to be of myeloid origin. This meant there were two lineages – lymphoid and myeloid, although the myeloid population was very tiny. In these cases, we design a therapy that targets both lineages. For lymphoid leukemias we treat with a lymphoid induction chemotherapy regimen, which in your husband’s case was E2993. For myeloid leukemias, we can treat with myeloid induction chemotherapy or for patients that are Philadelphia chromosome positive, we can treat with a tyrosine kinase inhibitor such as Imatinib (also known as Gleevac) or Desatinib (also known as Sprycel). Because [Kurt] was Philadelphia chromosome positive, the chemotherapy plan we designed for [him] was E2993 induction with Desatinib. I want to emphasize that if [Kurt] had simply Philadelphia chromosome positive ALL (in other words no myeloid cells) we would still use the exact same regimen of E2993 induction with Desatinib.

Now let me explain in more detail the diagnosis of chronic myelogenous leukemia (CML) in blast crisis. The pathologists emphasized to us that this was a challenging case. When the pathologists first gave us their analysis of the bone marrow, they also saw basophils and increased myeloid growth which suggested CML in blast crisis. CML is at first a slow growing disease but goes through 3 phases: chronic (slow), accelerated (medium), and blast phase (fast). Some people with CML to get from chronic phase to blast phase; others and we suspect, for [Kurt], this shift from slow to fast occurred over months at most. In blast phase (the fast growing phase), CML can make either or both myeloid or lymphoid blasts which is consistent with what we saw for [Kurt]. The definitive tests to prove CML are molecular tests and cytogenetic test in which we analyze [his] chromosomes. These tests confirmed the presence of the Philadelphia chromosome and also that the size of the BCR-Abl product was the p210 product. You can read more about this, but this p210 product is found in CML not ALL.

I want to emphasize, however, that we were thinking about both diagnoses from the start of [Kurt’s] care and that for both diagnoses, our treatment plan was exactly the same. Even though the p210 test was pending when we started treatment, we were confident that the chemotherapy plan we outlined would be the best treatment for both diagnoses. Our goal is to cure [Kurt], and the current plan of E2993/desatinib and transplantation is the best strategy for defeating his leukemia.

Thank You Cancer

Certainly, if it was my choice, I would not have chosen to have my body completely revolt on me and crank up my white blood cell count from somewhere around a normal of 4500 – 10,000 healthy cells to well over 90,000 cancerous cells. But since it was not my choice and since this disease was chosen for me, it must mean that there is a reason that I am the chosen one, right? Perhaps. Regardless of the why, ever since the moment I was told that I have leukemia I have been thinking hard as to how I can best take advantage of the disease so that I can learn from it and try to become a better person.

Before I was diagnosed with cancer, those closest to me often heard me say that people make it hard for me to like them. I was, and still am I guess, a rather cynical person. But now, I’m finding that people are going to make it hard for me not to like them. One of the first things that I have learned since my disease is how awesome and full of love some people are.

Most, hopefully, are loved by someone, whether it be it romantic, familial, or friendly love. For most of us, the love is always there in various degrees: we tend to feel it more when there is a reason–new relationship, new birth, the holidays, etc.–but we always know it’s there even if we’re not thinking about it. Mostly, I believe, we just expect love to be there, like air. I, personally, have never spent one minute of my life without being loved. Unfortunately, I never thought about it too much–I just took it for granted.

However, even though we are loved, it seems that most of us, unfortunately or fortunately depending on your perspective, go through life without receiving unbelievable, repeated selfless exuberant acts and testimonies of love unless, maybe, we are lying in a casket during our funeral memorial. I, far from lying in a casket, have seen these unbelievable, repeated selfless exuberant acts and testimonies of love by my family, friends, and acquaintances–too many to list here–and I am very thankful for them. I am also thankful to my cancer for giving cause for these acts and testimonies to be expressed.

I still have much to learn about the disease that chose me against my will–and I still have much to learn from it. But what I have already learned has changed my life, which makes me look forward to what I have yet to learn. And I am very thankful for that.