Update: I have been eating more and loving it. Now I actually like food. I am eating several small meals per day. For example, yesterday I had: 1/2 hamburger, a bowl of pasta with tomato sauce, a peanut and butter jelly sandwich, a big chocolate chocolate chip cookie, a bowl of raspberry sorbet, some cheez-its (of course) and a chicken quesadilla. That's a ton of food compared to...well, nothing! I am still having painful cramps every day in my upper intestine but from week to week they become less painful. Recovery is a two-steps forward one-step back process. About every other day I have a bad day that is not quite as bad as the bad day that proceeded it. Although I had surgery five weeks ago, when my upper intestine was obstructed and I started the process of eating over again in the hospital, my upper intestine started from zero again. So my upper intestine is three weeks into recovery and my J-pouch is five weeks into recovery. That probably explains why I'm still not able to walk much. Luckily, my J-pouch is what matters for the second surgery. With all that eating I still weigh 98 pounds. If anyone wants to give me a couple of their pounds, I'd appreciate it.
To get back to this spring, my symptoms reached a type of plateau in February and March. I was markedly better than the fall, but still not in remission. And "better" still meant way sicker than anyone in school should be. I went to the bathroom urgently 10-20 times a day, suffered internal bleeding every day, had terrible pain spasms up to three times per hour, wanted to throw up every time I ate and quite a bit of the rest of the time, and had very little energy. For this reason, my doctor at Georgetown agreed, with a significant amount of pressure on my part, to increase my dosage of the immunosuppressant Azathioprine to the absolute limit. I promised I would gain weight because my dosage was slightly above the weight requirement. At the same time, we decided to try combining Azathioprine with Remicade, an infusion of immunosuppressants that is essentially low chemotherapy, also used to treat Crohn's disease and Rheumatoid Arthritis. I have great health insurance so I don't have to worry about cost beyond a yearly deductible. Still, to give you an idea of how costly being sick can be, just one (1!) infusion costs between $8,000 and $9,000. I was getting them every four weeks. Even if I got one every ten weeks, that's about five per year, or $40,000 to $45,000. According to Consumer Affairs, unpaid hospital bills are the No. 1 reason for bankruptcy as of 2010. Just something to think about.
As I have mentioned in a previous post a ways back, some doctors will not even consider the combination of Remicade and Azathioprine because it is associated with fatal lymphoma and increases risk of infection in the patient. At the same time, the combination is supposed to be more effective than either Azathioprine or Remicade alone. Both my GI doctors in California and Georgetown advised that this was the last available option before surgery. If I did not go into remission, I would have to have surgery. Remicade is usually frontloaded, which means that infusions are given at 0, 2,4,8,16 and 24 weeks (so more frequently in the beginning, then every 8-12 weeks). Dr. Charabaty, my Georgetown GI doctor whom I highly recommend, decided not to frontload me because I had already tried Remicade the August beforehand and instead to give me infusions every 6 weeks. I reminded her that I hadn't responded as expected to Remicade the August beforehand, so we settled for infusions every 4 weeks.
For some perspective, having a dose of Remicade every 4 weeks is very very frequent and carries even more side effects. I didn't start infusions until early March because the whole process of making sure drugs haven't worked and deciding the next step in the scope of how often patients can see doctors takes a while. I had to go to the cancer center at Georgetown and I tried not to look at anyone because it made me sad. They did, however, bring around carts of free food and drinks. I didn't go anywhere for Spring Break because I couldn't exactly travel. Instead, I stayed in my friend Ghislaine's apartment on campus and ate lots and lots of cupcakes (and by lots I mean... as many as 10 in 24 hours).
It definitely was no way to live, but I focused on what I had control over: studying. I could study in my room when I didn't feel well enough to do much. I was in control of whether or not I did readings for classes so I always did them. I could decide how much to study and how. My mind could go beyond the confines of my body so I immersed myself in school. I've never studied so much and I probably never will because my level of dedication was totally unwarranted and only possible for someone who couldn't do much else!
Meanwhile, in February, I had called UCSF and made a date for surgery. I first picked May 23th and later changed to May 10th so that I would have the most time possible in preparation for the fall semester. I had to take finals early, but that was a small price to pay for an entire semester at my favorite place ever. Although I obviously hadn't come to any sort of decision about surgery, I needed to have some sort of end in sight for my peace of mind. I could always cancel the surgery. The marathon of UC finally had a finish line!
In March, on a whim, I decided to audition for a spot as a student speaker at the inaugural TEDx conference at Georgetown that I saw on the TEDxGeorgetown website. The topic was the Internet, which played a big role in the process of coming to terms with UC when I was on medical leave in the fall of 2010. It helped me feel less alone and I learned how other people had to deal with the same challenges as I did. During my audition I had this thrilling feeling when I realized that my story could give people perspective and I enjoyed sharing it. When I got a spot, I tried not to think about how much I hated public speaking and who on campus might find out some things about me I wouldn't normally tell them. Afterwards, I opened up a little more beyond the four friends from before about what I was going through. I understood that the more I shared, the more people could support me. All in all, the experience was great and inspired me to start this blog. After all the Internet had done for me - and despite how scary and tragic the message boards can be with stories of people sick for decades - I decided to put my own story out there. And it has truly been great.
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| Being social helped me forget what I was going through |
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| My friends were a great support system. |
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| Seeing Obama speak was a highlight of the semester! TEDxGeorgetown Video: http://www.youtube.com/watch?v=HZb_ufGfmtw |
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