The June sunshine was my friend. For the first time in two months I was feeling better and better instead of worse and worse. The biliary stent was doing its job. The yellow was rapidly draining from my skin, though it clung to the edges of my eyeballs. This gave me the rare excuse to lay out in the sun to drive the last of the jaundice away, and give some proper color to my now pale skin.
The stent did all that they promised, but not as much as I expected. It took away the yellow, and I no longer felt like a piece of overdone bacon all the time. But my digestion troubles were still with me. Each meal was like walking a tight rope blind folded. Each misstep brought pain. I didn't fill the morphine prescription, but I did see my Sturgis doctor, who prescribed codein for pain, and Donatal to settle my bowels and prevent the cramping. The Donatal helped a lot, but I still needed a pain pill or two most days. I would also exercise, take hot baths, and long naps to recover.
My strength had been pretty well drained by the fever, but it was gradually returning. I did yard work, resting when I felt like it (which was often). My customers were very patient with me as I got back out and did some work for them. I called my creditors, most of whom were delighted to have a medicaid number to try to bill to, even if it was out of state. There were a few exceptions. These I exchanged mail with for a while until I had at least worn them down to giving me a deep discount. It didn't seem right to give them full price when so many others had graciously accepted the more complicated and less profitable path of taking my medicaid.
My weight was 150 pounds, down from 193 a year and a half ago. It seemed stable, so I bought a couple pair of pants that fit. My old ones had started to look ridiculous on me.
Well, I may have been feeling better, but nobody told my insides that. On the second of June I passed another black stool. It tested positive for blood with the home kit. We went to the doctor and on to the lab to get my hemoglobin tested. It was 9.3. Four hours later we tested it again and it was down to 8.8. We asked the nurse if we should check into ER, and if so, at Sturgis or Kalamazoo? She said she wasn't in a position to tell us what to do, but her eyes were boring a hole in my forehead and whispering "go to ER ... go to ER ...". She seemed mighty relieved when we said we would go to Bronson Hospital in Kalamazoo. It happened that we had an appointment there anyway in a few days to consult with the doctor who would likely have to stop the bleeding.
Thus began round three of our ER of the month club. After an hour's drive up to Kalamazoo, we spent three hours in the ER waiting room. Apparently bleeding internally doesn't move you up in the line at all there. Once we got through the magic doors to where the doctors were, things moved along rather better. They saw the folder of history I brought, and pretty much took my word on my condition and situation. They did their usual poking and prodding of course, but they got me right on IV and I saw the Physician's Assistant within 20 minutes. It did take quite a while for a room to open up. They gave me some Dilaudin by IV while I was waiting, though I don't actually remember being in much pain at the time. Interesting stuff. You feel it tingle as it moves through your body from your arm. It doesn't seem to take more than 5 or 10 seconds to move all the way down to your toes. Does your circulatory system actually work that fast, or is it just an illusion you experience when it hits your nervous system?
Patti thinks I got a couple units of blood at some point before reaching the room that I was installed in sometime after midnight. The hospital room was very nice. All the rooms are private. The nursing care was very prompt, though I didn't need much that first night.
Patti stumbled home in the wee hours of the morning. I can't say enough about her sacrifices during these ordeals.
The next day I met my gastroenterologist. Actually, he was the partner to the doctor I would have seen in a few days. He was a very cheerful fellow, who inspired a lot of confidence. He answered questions quickly and simply. He said he would probably do something called "sclerosing" rather than "banding", because it tends to work better on smaller varices, especially if I was still bleeding enough to interfere with seeing what to band. He injects the vessel with a caustic chemical that cauterizes it shut. They wheeled me down to the endoscopy room, and as usual my mind went blank in mid-conversation. I woke up in my hospital bed. At least I did the second time. Patti tells me I always wake up enough to talk long before I can remember anything. She says I'm pretty funny to listen to, and that I spend a lot of time pushing my nose around my face with my hand.
It seems that I had still been bleeding, so he went in with all guns blazing, shooting in the dark. As a result, my throat was terrilbly sore. The pain would hit two or three seconds after swallowing, when the swallow hit my lower esophagus. I tried some liquid diet, but it was difficult. Dilaudin helped me sleep that night.
The next day I could swallow rather better, but the hospital food was already making me constipated again. I asked for and got a laxative. Funny, it made my stools liquid, but didn't seem to reduce the sense of fullness or cramping. I ate cream of wheat, pudding, jello, popsicles, and that sort of thing, but it just seemed to get worse and worse. By evening it culminated in a stomach spasm that I rated in the high 9's for pain. First I rang the call button and suggested they inform the nurse I was beginning to experience some pretty severe pain. I apparently said it too calmly, because for the first time he didn't manage to come right away. After a while I was standing on the floor but bent over with my chest on the bed. I stretched out my hand and reached the call button again. I said, "Um - I'm pretty well doubled over in here". This time the nurse came right away. I didn't know what to do, since I knew the narcotic pain killers could make the constipation worse. I didn't want to dig a hole I couldn't crawl out of. When the nurse saw the look on my face, he knew exactly what he wanted me to do. He wanted me to take the pain killer. I was not too difficult to convince. Within five minutes I was able to straighten my legs again and unclench my fists. He never trusted me after that. He was sure I was in pain and just not telling him.
I wasn't being a hero though. The spasm really did pass with the pain killer. I was able to sleep. But they woke me in the middle of the night to tell me my hemoglobin had dropped to 7.8, and they gave me two units of blood. Just give me a stent, some pain killer, and somebody elses blood, and I can function pretty well.
The next morning, a floor doctor I had not seen before came in to discuss my blood work. She said my hemoglobin and other numbers were still low. The spleen was probably sequestering my red blood cells, whatever that meant. She said she would ask a haematologist/oncologist she knew to drop in and take a look at me and my tests. She gave me a long sober look and said, "You know, your prognosis is not good." I didn't really have a snappy come back for that line. I just said, "I know."
The haematologist/oncologist stopped by as promised. His first question as he looked up from my chart was, "What did you do to deserve this?" I said that I wasn't quite sure. We proceeded to have an amiable discussion. He said he wasn't greatly surprised or disturbed by my blood work numbers. I never did understand what it meant for the spleen to sequester my blood cells, but apparently my spleen is enlarged, so there is plenty of room there to hide stuff. His advice on eating was to take the pain killer before a meal, and just eat. It was important to keep some weight on.
The doctor took me on as an oncology patient. He found me interesting, I guess. I tried his eating advice for two meals. I should mention that Bronson has a room service style meal system. When the kitchen is open, you just call with your order from the menu and it gets delivered. No complicated forms, no fixed delivery schedule. It was great. Pain killer (dilaudin) let me eat, but eventually pain killer wears off. When it did, my stomach felt like an empty, dried up punching bag. I resolved to try cutting back on wheat again to see if that still helped.
I was discharged with prescriptions for Oxycodon for pain, a proton pump inhibitor (like Nexium) to prevent stomach acid, and a Beta blocker (Toprol) to lower my already low blood pressure. The Beta blocker was canceled a few weeks later by my gastroenterologist, who was concerned that my blood pressure was already so low. I'm getting better at the hospital thing. This time I was only in for five days. I was able to attend Joey's ball game right after, and the Festival of the Wild Rose Moon the following day. Once again I could get back to the business of regaining my strength and trying to find a diet that didn't cause me pain.
Copyright 2003 by Rick Clark and heirs. Non-commercial users can link to or copy freely, so long as copies are in whole and include this copyright notice. Commercial users please contact firstname.lastname@example.org or the current address at web site rbclark.sturgis.mi.us. If you found a way to make money off this my wife and kids (or I. I might be around a while yet.) could use a piece of it.