It has been just over a year since I was hospitalized for a problem with my blood. Although I told my friends and family the details of my problem I didn't mention it on my blog because I didn't really knew what it meant for me or what the long term impacts would be. Now a year later I have some perspective that I wanted to share.
As I mentioned in my hospitalization post last December I went to the hospital because of a problem with a routine blood test. My blood test showed that my white cell blood count (WBC) was 80. Anything over 10 is a sign that there is a problem. Most people are in the 4-7 range. A high WBC usually indicates a severe infection or leukemia. After I checked in to the hospital and got the results of the first blood tests came back they were almost 100% sure I had leukemia. The question was which type.
There are four types of leukemia which falls into two main categories. Leukemia is either Acute or Chronic and it is either lymphocytic or myeloid. If my type was the Acute variety then I would have to be in the hospital for 2-3 months while they killed my bone marrow, give me a bone marrow transplant and then rebuilt my immune system. If it was Chronic there were chemotherapy treatments that could be done mostly as outpatient therapies.
It took a couple days of testing to determine the exact type of leukemia I had. During that time I had a lot of blood tests as well as a lot of different X-Ray and CT scans. I also had a bone marrow biopsy. The bone marrow biopsy was uncomfortable but not painful. You basically lie on you stomach while a doctor drills a hole at the top of your butt bone so he can insert a needle into the bone marrow of the hip bone to pull out some fluid. The most disturbing part of the procedure was when I felt the needle hit the inside of my hip bone. It wasn't painful but having something scrap the inside of a bone in your body feels wrong on a lot of different levels.
Originally the doctors were saying that I probably had Acute lymphocytic leukemia because of the fact that I didn't have any symptoms with my high WBC and that my lymphocytes were really high. Luckily after all the tests came back the diagnosis was Chronic lymphocytic leukemia (CLL). After I left the hospital I had a PET scan and a genetic test to rule out one other possible cause and to determine the best treatment. There were a couple of different treatment options but after looking at the alternatives we decided to go with a pill I would take a couple of times a day to help my body kill the bad white blood cells that were building up in my system.
CLL is caused when a random mutation happens in the white blood cells that causes some of them to be abnormal. That causes two main problem. The first is these mutated white blood cells don't actually fight infections like they should. They also build up in my bone marrow, lymph nodes and blood instead of dying like they normally would. As the mutated white cells build up it it crowds out the other type of blood cells I need especially my platelets and red blood cells. By the time I was in the hospital and diagnosed even though I had an abundance of white blood cells I had almost no immune system to the point even some stray bacteria that would normally be harmless could put me in the hospital with a severe life threatening infection.
The treatment we chose works by targeting a certain enzyme in my mutate white blood cells. Blood is a lot more complex that I thought but I got a quick education in it's complexity and was impressed by the level of understanding that the medical community has about blood and how they can now really target specific problems without a lot of side affects. If you are interested on understanding how far medicine has come in understanding blood and other cellular processes I recommend reading The Song of the Cell by Siddhartha Mukherjee
My hematologist told me that the treatment should work but it would be a slow process so as I started the treatment I monitor some of the key blood factors namely WBC
and Hemoglobin
It took a while for me to see the treatment start to work. Since this problem was discovered with my WBC so high it meant that my bone marrow and lymph nodes were flooded with the bad white blood cells so although the treatment was working it took a while to flush them out of my system and see progress.
Although the initial diagnoses was a shock, I am a pragmatist so my attitude was let's understand the problem and fix it. Once the treatment started and I had more time to think. That's when I had a lot of questions that I didn't have the answers too which was a little depressing. Would the treatment work? Would the drugs I was taking cause any side affects? Would my immune system come back to normal or would I have to isolate myself forever? Would the leukemia affect my lifespan? Could I get back to my normal riding again?
The last question was the most important to me. If I can't ride close to like I use to then who am I. Riding is a big part of my life. I do it because it give me a lot of joy and I'm lucky enough to have a good group of friends that I enjoy riding with.
During last December and January while I was waiting for the treatment to kick in my numbers actually got worst and my hemoglobin got down to 7 (Normal is 14 to 15). I was still able to ride but my rides were a lot shorter and slower. I had a 15-17 mile flat loop I did from my house. It was about the max I could do for the first couple of months. My speed was barely in double digits and my heart rate was 20 beats higher than it normally should be. All this was because the low hemoglobin made it a lot harder to process oxygen that my muscles and lungs needed. I even had to stop once our twice during some of the early rides to let the oxygen in my blood replenish itself.
It was disturbing how bad I was riding and how hard it was to do these short flat rides BUT even in the cold weather it just felt good to know I could still ride even if it was short and slow.
Eventually the treatment started to work and my blood got better. My 17 mile rides turned into 25 miles rides then 35 mile rides as the weather got warmer. I was still slow but getting a little faster and was able to ride with my friends again. By May I was riding on the low end of normal for me. And at the middle of the summer I was riding as good as I use to and able to do hills again. I actually felt good again. I was riding good enough that my friends joked that I must be blood doping.
It took almost a year to get my blood number back in the normal range. There is no cure for CLL It can only be managed with drugs. Luckily for me these drugs don't cause any major side affect and doesn't affect my normal life. I will be visiting a hematologist a few times a year for the rest of my life. I am also now more careful about trying to avoid situations that could get me sick. I still don't fully trust my immune system yet but this gives me an excuse to avoid large social gatherings which I don't like anyway.
At this point my leukemia is more an annoyance than the serious disease it was a year ago. I have to be aware of it and watch it but it is no longer a major concern or affects my day to day life.
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