The Saga: Part 5 - It gets worse

When I finally decided to take a semester off, I felt less pressure to get better. I just let my health run its course and relaxed. I spent afternoons in my garden and waited until my parents got home from work. Berkeley has "Indian summers," which means that September and October are hotter than the summer months. Counting on getting better in a few weeks, I hoped to find an internship in the Bay Area or go back to DC and stay in an off-campus room I had rented for the fall. In mid-September, Dr. Hosseini had me start taking the pill Azathioprine, which takes months to take effect. He strongly encouraged me to gain weight so that I could increase the dosage. At that point I weighed about 100 pounds. He hoped that Remicade infusions would carry me for the next couple months until the Azathioprine kicked in. At that point I was on both Remicade and Azathioprine, and the plan was to stop Remicade once Azathioprine worked. The combination is highly discouraged on account of side effects like lymphoma and some doctors won't even let their patients combine them for any amount of time. 

Flag fun

In September I also started my famous flag project. I wanted something to do but I couldn't go anywhere or do anything that required significant thought power. I don't know the flags of the world as well as I should, and since I had more time than anyone should ever have, I thought that drawing them by hand would be a great idea. When friends came to visit it gave us something to do together and I didn't have to entertain them. They didn't say anything about my health, but I could tell they were concerned. I was able to function in the little world that I had created for myself, but I was nowhere near normal. Of course, I didn't know that at the time. I spent my days trying to sleep, trying to fight pain, and trying to eat. And although I don't like to mention it, I went to bathroom 10 to 20 times per day and needed to be near one at all times. That really limited where I went! My parents set up a card table in my room for me to do jigsaw puzzles. I went through a couple per week. I disliked my dad's puzzle style - he goes for color instead of shape, and it looks like he is stabbing the puzzle when he tries to get a piece in. At least I was present enough to be annoyed!

My sister came home for a few weeks and she set up a weight gain chart to encourage me to eat more. It didn't really help me because I started to lose about half of a pound per day. The chart just went down and down until I stopped plotting data points. I weighed myself every morning and I eventually started lying about it to my parents. I felt like I was disappointing them and I had started to give up on eating. It was just so difficult and unpleasant that I would rather do anything else. I simply couldn't will myself to swallow. My mom didn't understand why I couldn't eat and I didn't either. When I got down to 93 pounds, I just started crying. I didn't know what was happening and I had no idea how to stop it. My mom couldn't convince me that I wasn't eating enough so she decided to have me keep a food diary. I realized I was taking in 200 to 300 calories per day. I had always been able to accomplish what I wanted to with my will, but suddenly I couldn't, and my life was on the line. 


Dr. Hosseini decided he wanted to make sure (for the third time) that I didn't have Crohn's disease because my colonoscopy in August had shown a "giant cell" and unusual depth of the ulcers in the tissue in my colon, both things almost always associated with Crohn's disease and not UC. This time I got to do a capsule endoscopy, which is actually really cool. Dr. Hosseini wanted to check to see if I had ulcers in my upper intestine - which would mean I had Crohn's - so he didn't need to make me go through another colonoscopy. Instead, I swallowed a pill that had a blinking light and a camera. I did the same prep for a colonoscopy but I was allowed to eat a couple hours after I swallowed the pill. The nurses taped transmitters on my stomach that recorded the pictures the camera took and stored them in a device that I wore as a belt. After eight hours, I went back to the doctor's office. They took the device back and took off the receptors. A week later, Dr. Hosseini told me that he had reviewed the film (your dream job, right?) and I definitely did not have Crohn's. That was a relief!

At each doctor's visit my doctor began to tell me to go the hospital if symptoms persisted. Each time I would clarify, "You mean, if they get worse?" He would say, "No, if they stay the same." Well, I thought, I can ignore that piece of advice. I was surviving and I didn't think there was a limit to what I could withstand. Hospitals are dangerous places that are much less comfortable than home. I could get Mersa or C. diff, common infections in hospitals that can be worse than what the patient came in for in the first place. My doctor got the picture and filled out a form for a picc line, which is an IV of sugar and water administered by a home nurse. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. I called my friend Ghislaine (pictured previously) who had experienced a picc line in the hospital. She told me, "Don't get a picc line! They are the worst! One of my veins collapsed. Just eat, eat, eat. You can do it." Well, I thought, I'll just have to try harder. 

A few weeks later I suddenly got significantly worse. I threw up during the day. I started waking up in the middle of the night to throw up. I threw up when there was nothing left to throw up. I started having a terrible pain between my ribs that I mistook for chest wall inflammation. I started taking Vicodin around the clock but it wasn't good enough. Previously, I had taken Vicodin every other night so that I could sleep (otherwise I could not sleep on account of the pain). Then I switched to oxycontin. But since I was throwing up all the time, I couldn't keep the pain killers down for long. As I sat in the bathroom one afternoon, I realized that I wouldn't mind not being alive. It wasn't like I wanted to kill myself, I just for a moment felt indifferent to being alive. I had never felt that way before because every second I was alive was precious to me. Living is just beyond belief! So at that moment, I decided that I absolutely had to go to the hospital because not wanting to live, even if just for a second, was the worst thing that had ever happened to me.