Vocabulary Lesson

If nothing else, I know that to be physically challenged by an uncommon disease is also to be mentally challenged to learn more. I've learned about RCC; I've learned about the structure of medicine in this country; I've learned about clinical trials and drug discoveries; I've learned about my own limits and how to make compromises between "want to do" and "able to do". Along the way I've discovered a whole new vocabulary. Sometimes I pursue new words out of curiosity. Increasingly, though, I find that I am doing research out of necessity.

This week I learned a new word: ascites. In clinical terms, it's a buildup of fluid in the peritoneal cavity caused by the liver's inability to process wastes. In more approachable terms, courtesy of Dr SC's lead nurse Kelly, "Think of the liver as a garbage disposal. Ascites is what backs up when the system's clogged."

I learned this one because it appears that I've developed it. We won't know for certain until I've undergone my usual round of scans this coming Wednesday, but I've got the classic symptoms: distended abdomen, feeling of fullness, loss of appetite, constant low backache, general fatigue. What makes this fatigue different from my normal level, you may ask? It's hard to explain, but I feel heavy, lethargic, and always uncomfortable. It could be worse; Kelly described the backache as "pregnant back" - I figure she should know, as she has twins. The backache is accompanied by gross distension of the belly, sometimes approaching "full-term" size. I've never been pregnant myself, so I can only distantly appreciate what every mother goes through.

I'm on a diuretic and have doubled my dose of Dilaudid. So far, after only two doses of the diuretic, my abdomen has deflated, my appetite has returned, and my backache has receded. Last night I slept the night through and I feel more energetic today than I have for a week.

When I encounter a new word these days, I think of "The Secret Word" on Pee-Wee's Playhouse. "Scream real loud!!" What a way to learn!

Slow down!

I've been volunteering with a local adult education program for about 18 months now. We just finished our spring offering of classes, we've sent the fall brochure text off to be prepped for printing, and we're starting to plan next spring's classes.

I can come up with lots of ideas for classes; that's one of the benefits of volunteering, as things I want to learn about are included in the program. I also get a chance to teach knitting classes (thereby exposing more people to my mania).

I'm pleased by the program's success and I'm glad that I can contribute to it without jeopardizing my health. But sometimes it seems like it's become a year-round task; I'm glad that we're taking the month of July "off" from official duties.

Saint H and I celebrated Memorial Day by going out for a drive to the western part of the county. There's a sizeable Amish community out there, so there are lots of hayfields and pastures. Where there are pastures, there are grassland birds and, if the pastures are large enough, there might be bobolinks. We did, indeed, spot a few in one pasture where we've seen them for over a decade now. What a comfort that they come back!

Passing Milestones

Wednesday was sort of a special day - on May 14, 2003, I had a doctor's appointment. Dr. MC told me that there was something "smudgy" and difficult to decipher on my last C/T scan; what did we want to do? At that time we decided to wait and see for the next scan results, and at that time I was only getting scans every six months. That next scan in fact identified a lesion in my liver that led to my Stage 4 diagnosis, then to my liver resection, the subsequent spread, my involvement with treatments, retirement and clinical trials. But - though the last five years haven't been a bed of roses, I've had those five years, and not many other renal cell patients can say that. Statistically I'm way ahead of the game. I'm thankful for every new day, and surprised by how much has happened since that day five years ago. Would it have made any difference, had we scanned more frequently then? I don't think so - I was in the grip of aggressive disease, and suspect it would be just so now, were I not on Nexavar.

I'm very happy to have lived to see our beautiful niece Candy get married Friday, May 16. "Uncle" danced with the girl he has always looked on almost as a daughter, and we danced together too. I made it through slow dances and even some of the goofy "wedding group dances" that are always played; a good time was had by all. Good times, good tears. Some things are just worth living for.

Get Hep

I've been watching the unfolding drama: tainted drug supplies, multiple deaths, international fingerpointing, lax inspection. At the very least the furor over Heparin manufacture in the last few months has outlined a disturbing trend. Heparin is a life-saving drug that figures into treatments for dialysis (and, like me, for patients with Mediports) every day. If something is that vital to survival for people whose health is already compromised, why isn't more done to control its manufacture and its safety? I must say that finding out where Heparin comes from, pig intestines, isn't disturbing in any way to me; lots of valuable medicines come from animals. Finding out how Heparin is processed, again, might not be of concern; good for those enterprising Chinese families who make the effort to provide the raw material. Finding out that the supply chain is so limited gives one pause - why do we have only two manufacturers in this country? Finding out how few checks and balances are in place is frightening. Finding out how little the FDA can do to perform the necessary inspections is infuriating. I think it will be interesting to see what happens next.

Yesterday Saint H and I put up the martin gourds for this season; keep your fingers crossed that this will be the year for our colony to start. We have 16 tree swallow eggs and 4 bluebird eggs in the nest boxes here. We walked through the woods, finding blue and yellow violets, May apples, Solomon seal, and bellflowers (as well as poison ivy, Virginia creeper, and garlic mustard). Much to my surprise, about 50 trees have survived years of standing water in the south field - they're not big, but they look pretty robust. I wish I had the stamina and determination that plants show!