Cancer

Finding Out – Part I

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Finding Out – Part I

Of course once I was diagnosed with leukemia I immediately understood why I had become so tired so often beginning sometime around the end of July 2009. Physically, the year started out great. I had ankle surgery in 2007 for a dislocated tendon on my left ankle so I had not really worked out since then. But at the beginning of 2009 my ankle felt pretty good and I began running and working out. I kept it up until mid-August when I had to stop because I just did not have the energy to work out any more. I assumed it was because of Lyme disease. I was infected with that garbage way back in 2005 and had been suffering from its symptoms–lethargy and achy joints–ever since. As a result, I was not too concerned about my health at that time.

It was not until mid-November when my body made some physical alterations that forced me to take note. I was out mowing the grass, typically a three-hour project, when suddenly all of my energy drained from me. I was only about an hour into the job but I had to stop. Football was on so it was not too hard to convince myself to take a break. I made it to the TV room, put on the game and kicked my feet up. Because I was so exhausted, I fell asleep almost immediately but was soon awaken by severe cramping in my left calf and foot. My feet and ankles occasionally cramp up when I sleep so, again, I did not think much about it, even though the cramps continued through most of the afternoon.

When I woke up the next day I had what I thought was a big charlie horse in my left calf. Also, my left ankle was swollen and sore. I wrapped them and off to work I went. This went on for a week when I went to the doctor’s for a check up. I still thought I was suffering from a muscle cramp so that was how I articulated the symptoms to my doctor. He checked out my leg and told me to come back in a week if the condition persisted. The condition persisted and by a week later, my entire calf and ankle had swollen to what seemed was double its size. Back to the doctor I went. My doctor was not available so I was seen by my wife’s doctor. By this time I knew I was not suffering from a muscle cramp. I thought that perhaps I got bitten by a bug or some other poisonous critter and that is what I told my wife’s doctor. She took one look at my leg and without hesitation told me that I was suffering from blood clots.

Blood clots!? What the–! What is a healthy, forty-four year-old guy like me doing with blood clots? I do not eat too much junk. I do not smoke. I drink too much wine and coffee perhaps, but is seems that they should thin my blood, right? And what the heck did I do all that working out practically all year for if I still ended up with blood clots? I did not have too much time to reflect in the doctor’s office because she immediately sent me off to the emergency room. On my drive over, I did reflect. More accurately, I stressed out on the fact that I may soon be on blood thinning medicine, perhaps even the same medicine that my father is on. I was still battling with my current state of affairs when I limped my way in to the emergency room.

My Doctor's Explanation

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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.

It’s Not Lymphoblastic!

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Today, during a visit with my doctor to discuss Phase Two of my treatment, my doctor threw me (as well as my wife and daughter who were with me for the visit) for a serious loop. He started off immediately by explaining that after further analysis of all of my tests, I now have, and always have had, Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis instead of Acute Lymphoblastic Leukemia (ALL), which I was my original diagnosis. I am still stuck with the Philadelphia Chromosome abnormality. That has not gone any where.

Nothing changes though, as far as my treatment goes. I will continue to take the drugs that I have been taking for Phase One of my treatment (I still need to list those on my Treatment page), and beginning Wednesday, January 13, 2010, I will begin taking about four more additional chemotherapy drugs to bring my counts back down. After my counts are brought back down again I will have another bone marrow biopsy. Oh yeah, I must not forget the fun of another four lumbar pulls (AKA, spinal taps) during the upcoming phase. Fun, indeed. Better yet, it’s a Blast Crisis!

So, in the end, nothing really changes but the name. There are consequences for the impact on my disability claims, though. I have already completed the paperwork and identified my disease as ALL. I guess there will be some backtracking to do there.

Thank You Cancer

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Certainly, if it were 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.

It’s Lymphoblastic!

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It’s hard for me to write under the best of conditions–I’m a pronounced procrastinator who always can rationalize away a reason to write. But now that I’m down with cancer, I have both the best opportunity to, as well as the best reason not to, write.

I have much to write about–anyone does, really. But in the short period of time since my diagnosis on November 30, 2009, with Acute Lymphoblastic Leukemia (ALL) and the Philadelphia Chromosome abnormality, I have accumulated many things in my mind that I would like to record for my own self-interest. For example, I would like to log down the emergency room scene when I was told about my disease, including the moaning drunk outside my pulled curtain (as cliche as it may sound), to capture what I remember and felt about that experience. I would also like to describe what it’s like to be stuck in a hospital bed in a room where everyone who enters has to wear a mask. It becomes rather surreal when I had multiple visitors sitting around me trying to communicate through their eyes. And of course I will want to try to explain how the treatment and various medications are affecting me physically and mentally. Yes, lots to discuss as long as I am unable to convince myself not to write.

But what I really want to acknowledge first and will discuss in my next post, what I want to make sure anyone who reads this understands, is that I very quickly have become truly thankful for my disease.