June brought new worries, and did little to resolve old ones.
After getting out of the hospital from this last bleeding crisis, I sat down to a game of Free Cell. Free cell is a card game present on most computers. I was startled to find large patches of my peripheral vision distorted the repeating pattern of the cards on the screen. I had actually noticed this several months earlier when I glanced at an Ansler Grid (a graphic used for detecting macular degeneration) that a customer had. That wasn't as severe, and the problem disappeared in a week or two, so I didn't mention it to anyone.
This attack seemed much more severe. I went to the optometrist. They said go straight to the opthalmologist. Do not pass go. Do not collect $200. I saw my primary physician at a followup appointment from my hospital stay. She arranged a referral to the oncologist I met in Kalamazoo, and to the local opthalmolgist.
The oncology visit was depressingly anti-climactic. We had hoped there would be some next step in my treatment, some sense of progression. From what we had been told at Cleveland, I suppose we shouldn't have expected anything different. All that happened was I got my second monthly Sandostatin LAR shot, and a vitamin B12 shot. Of course I was poked and prodded for vitals and blood tests too. He seemed surprised that my gastroenterologist had not prescribed a Beta blocker to reduce my portal hypertension and reduce the chance of bleeding. The oncologist prescribed Toprol for that purpose. The doctor patiently explained why all of our ideas for what could be done would simply shorten my life. I suppose he was right, but Patti took it personally as if he wasn't trying. He also said he was aware of no connection between Carcinoid tumors and vision problems. Great. So I had a completely separate problem of going blind, just to make life interesting. This should have struck close to home, as my father had had a cruel attack of macular degeneration at the beginning of the year. Actually, it all seemed rather surreal to me. I couldn't quite take it seriously.
Two days later, I visited the opthalmologist. After dilating my pupils and peering into them with bright lights, the opthalmologist said I had Central Serous Chorioretinopathy (CSR). Patches of retina were lifting off the back of my eyeball. The good news was that it was not necessarily permanent. There was an active area in my left eye and a scarred spot in my right. He referred me to a retinal specialist at U of M in three weeks. He also said he knew of no association between CSR and cancer.
My father and my brother Brian had given me a wonderful gift this summer. Instead of joining a golf league for the summer, they took me out golfing as often as I could get up to Fennville, which was nearly every week. It was an odd sensation teeing up a golf ball that first time after my CSR was diagnosed. The short clipped grass of the tee box was also a repeating pattern. It made the blind spots really obvious. They kind of swam around the white ball in the center. Somehow or other, I did manage to hit the ball. I could even see where it went. That was not always a blessing.
Naturally, I did a little independent research on CSR. I found that it is usually diagnosed in serious athletes that put their bodies through a lot of physical stress. Well, that certainly didn't sound like me! Digging a little deeper though, I found that Carcinoid tumors can also cause it by secreting the same corticoid stress hormones that athletes experience. Aha! At least I didn't have to feel like God is picking on me. I don't have the patience of Job.
A week or so later, I had another sclerosing appointment with my gastroenterologist. As usual, I didn't remember anything he said aftward, but Patti tells me he only found some "smaller" veins to fix this time. He also said he thought a Beta blocker was a bad idea, because my blood pressure was already so low (95 over 60, with a pulse rate of 60). So I discontinued the Toprol.
Meanwhile, I was still walking a tightrope between eating enough to get some weight back, and not eating things or quantities that made my intestines violently angry.
Every trip to the hospital seemed to leave me lighter weight. Either they didn't let me eat anything, or I ate hospital food that sent my usual gut problems into overdrive.
This last time I held my own, I think, but 150 pounds is still frighteningly thin. I tried many things to overcome this. The doctor prescribed Donatal to control spasms. That helped, but seemed rather like a bandaid. Exercising after a meal also helped, especially if I followed it with a long nap. That sort of thing is really hard to keep up, though. And the naps really consume the day, to say nothing of being hard to manage at a customer site. Like the Donatal, it helped, but didn't really fix it.
I avoided the Gluten free diet that had worked for me in the past. For one thing, I couldn't help but wonder if it had triggered my first bleed. For another, I had plenty of pasta during my August backpacking trip in Yosemite when my symptoms went away. And the lab tests showed I don't have Celiac disease. Mostly though, I really like bread and cookies and doughnuts.
Finally, I stumbled on my main dietary problem. It wasn't the wheat in the jelly doughnuts that was giving me grief. It was the sugar! Darn. That was almost as bad as a wheat allergy. But after three days with no sugar, it was like flicking a switch. I felt so much better. And I remembered that I had practically no sugar backpacking either. It also took three days on the trail before I was suddenly diahrea free.
Eureka! This was wonderful. I finally had a handle on my gut problems. The only drawback was, well, I couldn't eat sugar. As soon as I realized I couldn't have sugar I craved sweets. I explored the wonderful (and rather expensive) world of sugar free cookies and candies. I bought a big package of sugarless sugar wafer cookies. Yes that's an oxymoron, but for an oxymoron, they are quite tasty. I ate that huge package in two days. The next morning, I was in pain again. It was a different kind of pain though. I was gassy, my liver and spleen ached, and the pit of my stomach was queazy, but my intestines were fine. I had diahrea again, though.
Looking at the label, I saw that instead of sugar, the cookies had "sugar alcohols" like sorbitol and malitol. In fine print at the bottom it said, "May cause diahrea in large amounts." Apparently, my liver was giving me a hangover without the fun of getting drunk first. I also had a fever, so I visited the doctor. She concurred that it was probably not a good idea to eat a big package of anything containing sugar substitutes in just two days. She prescribed some anti-biotics for the fever. The next day was the Fourth of July weekend. We were scheduled for a family reunion up in Fennville. The doctor said I could go, but suggested a two day fast might be a better plan than loading up on hot dogs while I was there.
The family reunion was wonderful. At first I was mostly a spectator, leaning against the balcony rail in the sunshine as my brothers and sister and their families milled about down below. It didn't take me long to work up the strength to be involved, though. There was a big storm blew up, with a warm driving downpour. Brothers Terry and Bob and I stood in it yelling at the elements as we washed the sweat off. It's not like I was worried about being struck by lightning. My mother didn't even yell for us to come in. At least not that we could hear.
My two day fast only lasted about a day. I did have a hot dog or two, and even snuck a sliver of pie. There were trips to the Lake Michigan beach, boat rides, horse shoes and card games. By the end of the weekend I was well on the mend.
A few days later I had my appointment at U of M. I looked at charts. I had my eyes dilated again. They took flash pictures of the back of my eyeballs. Then they injected my blood with flourescent dye and took more pictures. The very tall, cadaverous looking specialist reviewed all the data and told me they had found ... nothing. The patches had healed themselves, apparently even most of the "scarred" area. Unlike macular degeneration, CSR can come and go, and it had gone. The Sandostatin shots must have quieted the activity of my tumors. Or maybe my sugar free diet had. A good thing, of course. The specialist did confirm the carcinoid tumor connection, and sent me home with some interesting photos and his best wishes.
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.