Cyril van der Haegen is an award-winning illustrator and concept artist. He now lives in Rhode Island with his 3 cats. His website is http://www.cyrilvdh.com/
My Idiopathic Thrombocytopenic Purpura (ITP) in graphics! (see the image that has columns over time)
This is my platelet history as far as I can get (started Aug 2010). It may not be entirely complete but it is accurate. I wanted to share it with friends and supporters to show the weekly progress over the past 85 weeks or so.
Since the diagnosis, I have been at the hospital at least once a week (up to four times on bad weeks) to get blood tests and treatments. You can see that for 3/4 of the time period, treatments weren't particularly successful. The peaks are due to IVIG, which boosts your system but only temporarily. The red bars are showing a platelet too low for the machine to count, so it simply reports "< 10K". The yellow bars are around 10K but measurable. The yellow area represents 30K, which was the limit my first doctor used for me to get IVIG. The red area is 10k, which is what my present doctor uses as a limit to get IVIG. At 10k or below, you're at risk of bleeding to death, hence the 'lethal' terminology, and you _must_ have the IVIG booster, or roll dice and hope you don't get a cut or bleed internally...and never wake up.
The 4th quarter area on the right shows when I started getting a weekly shot of Nplate, and while I am still quite low compared to a normal person (big bar on the left), reds have not appeared in a while, which is encouraging. However, I also am not being stable as I jump from high to low too rather drastically (e.g. last week I was at 90k, this week 44k, basically losing half in a week).
Ideally, if I can reach 100k and stay there, they will reduce the dose of Nplate and everyone will be happy. I'm working on it :) Well, not really. There's nothing I can do but to witness my own body arguing with itself, but I will cheer for the good guys (I'm not even sure who the good guys are. My platelets are doing their jobs and my immune system is doing his. They're just not talking to each other. See? communication! it's always the problem :)
When the platelets are 'high', I feel OK (never fine, but OK). When they drop, however, pains start to appear with joints, and a nauseated feeling overpowers you on occasion, and I'm constantly tired (fatigued, even) It doesn't help moral, with all its consequences. The battles aren't only on one front: it's physical, mental, social, economical, practical, etc...It's hard to explain to people what the feeling is unless you've experienced it yourself. It's like trying to explain to a man what giving birth feels like. We'll never really understand.
I'm not writing this to get sympathy but to let you know, as much as I can, what it is that I'm going through. I want to thank all of you again for your support, it means a lot to me.
I am now 42 and I still haven't gotten the answer to the question about Life, the Universe and everything so perhaps I should re-read Hitchiker's Guide to the Galaxy again. I need to start carrying a towel everywhere too, according to Douglas Adams. This is the first time I celebrate my birthday with my two new roommates, I. and M., living rent-free and wreaking havoc within. It's a bittersweet moment, truth be told. I feel like it's My First Supper, where "I., this is my blood, don't spill it, and leave some for me!" and "M., this is my body, you can have some, but learn to share, damn you!". "Soooo, which one of you will betray me? both of you? and for what? 30 pieces of Chikin McNuggets? are you frakkin kiddin me?" And no, it's not a halo, it's a painting oddly positioned to create a narrative that parallels Leonardo's masterpiece which...err...meh, screw that. Well, I'm now aiming for 43. Hope to meet you all there! :) C.
Cyril has had an on-going series of seemingly minor health problems that have kept him feeling cruddy for the last couple of years. Late in 2011, he went to see a doctor about one of these, and after a blood test, they rushed him to the emergency room for treatment because of dangerously low blood platelets.
He was diagnosed with Idiopathic Thrombocytopenic Purpura, or ITP. It's a form of Leukemia which causes his immune system to destroy the platelets in his blood. Symptoms include fatigue, and lack of blood coagulation if he is cut or bleeding. ITP is a chronic condition, and current treatments have a 50% cure rate. In Cyril’s case, even the newest “wonder drugs” have proven ineffective in reversing his condition. He is currently on the drug Promacta to keep his platelets from plummeting. When they fall below a critical level, he has to go to the hospital for a day of intravenous platelet booster. To determine why the standard drug therapies were ineffective in reversing his ITP, Cyril had a bone-marrow biopsy, and was diagnosed with a second disease called smoldering Myeloma, which is a cancer of the plasma cells. It’s called 'smoldering' because the cancer isn’t growing aggressively. While it hasn’t infected Cyril's bones or organs at this point, it is an incurable condition, and the best hope is to keep it in remission. In addition, Cyril has had ongoing severe joint pain, and his doctors have not yet been able to diagnose the cause. To date, medications have made him further fatigued, and resulted in nausea and a loss of focus. Ultimately, if there is no upswing in his platelet production through drug therapy, Cyril may need to have his spleen removed, which should eliminate the ITP, but not the Myeloma.
As you can imagine, Cyril is also fighting to keep his spirits up. As is the case with many artists, Cyril is self-employed and uninsured. Fortunately, he is able to work, and has qualified for very low-cost medical assistance from a good local hospital. We are organizing this auction as a way to help him deal with the uncovered costs, as well as his living expenses while he undergoes treatment. It's our hope that a strong response to this effort will help bolster his spirits as well as his finances.