This morning I am getting ready to go to the hospital to get a bone marrow biopsy. Not something I’m particularly looking forward to. You see, in order to get some bone marrow from a person the doctor has to push a horse needle into your hip bone and then suck some marrow into the needle. Why would I agree to subject myself to this procedure you ask? Four years ago I was diagnosed with a rare, but fairly treatable form of Leukemia – Hairy Cell Leukemia (HCL). When I say rare, I mean among the 700,000,000 people in the US and Europe are less than 2000 new cases reported per year. You are literally more than three times more likely to be killed crossing the street than contracting Hairy Cell Leukemia. And if you do find yourself fighting the disease, the 20 year survival rate is about 95%. Compared to other cancers, the prognosis for someone with HCL is very good.
Hairy Cell Leukemia (HCL) is very treatable, but because so few people contract it, individual doctors and oncologists don’t see it often or at all during the course of their careers. I have a wonderful medical team behind me, but I suspect that I am only one of two people that they have treated with this disease. They are busy people with limited time during the day for research into my disease of interest.
The internet allows me to connect with communities of people who are also fighting the disease, and with other medical professionals who specialize in it’s treatment. For HCL in particular I’ve found a great online bulletin board, called Rob’s User Friendly HCL Site and Chat Room. The support there is wonderful. When my blood test numbers recently starting trending downwards, I of course consulted with my doctor, but I also shared with the HCL board. I received support from the board, and also some advice from a Doctor who is a regular on the board (a GP who is himself is a HCL survivor). I also received private messaged pointing me to journal articles that related to what I’m going through at this point in time. I now have two or three thing to consult with my doctor about, including an article from the Journal of Clinical Oncology that talks about different chemotherapy strategies that have been tried over the years with HCL.
Without the internet, and the communities that it enables, I would know much less about the disease I’m battling, and would be not nearly as well equipped to discuss different treatment options with my doctor. So after not visiting Rob’s User Friendly HCL board for a couple of years now (since my last round of chemotherapy), it looks like I’ll become more of a regular now that my old friend is back with me. By the end of next week when my bone marrow biopsy results are back I’ll have a better idea of what treatments, if any, I have to look forward to.
For now I’m feeling great. This past week, I’ve played soccer twice, gone mountain biking with my sons, and played a little touch rugby. Life is good. I have much to be grateful for. I better get going though, my ride to the hospital for my bone marrow biopsy at 10:30am is about to leave.