Renal Cell Live!

Friday, May 28, 2010

Keen-Eyed Man

I'm such a good, compliant patient! Much against my inclination I decided to go back on the full dose of Votrient after my stomach had stopped rebelling. I really wanted to cut back the dosage, but Dr. G overruled me. After I got over sniping about "Dr. God" I finally figured out that he was simply trying to remove the reaction to the sulfa drug from the equation, and his wishes actually made more sense than mine. And I'm happy to report that over a week has passed on the full dose and I have had no apparent side effects. If things go well I'll stay on it at least until the first set of scans next month. If, however, I develop the side effects again I'm sure he'll have no objection to cutting the dosage back somewhat.

I had some trouble sleeping earlier this week. One night I stayed awake until 5:00 a.m.; before I went off to bed I managed to drop my laptop edge-wise on my left big toe, leaving a big gash and a fabulous bruise. That was partway healed when, another morning, I had gotten up and settled on the couch to work on some documents. I stood up, my right foot buckled under me, and I fell, twisting my ankle. Thank goodness (in some ways) that I've much experience with that ankle - I've probably sprained it six times since I entered college, twice really badly, and I've broken it. I could tell that it wasn't broken, and I had all the goods to alleviate my situation - I just wrapped it and elevated it, put cold compresses on it, and clumped around in my airboot (from the break in 2001). It's still sore after 5 days but I can walk almost normally. I suspect that my balance has suffered over the years, or else I've become sensitive about falling after repeated episodes; I find that I'm just not as steady on my feet as I used to be. I guess I can live with it as long as the damage isn't too severe.

Last week my brother P got a big surprise - he found a downed weather balloon in a field across from the house. He called the number listed and received a visit from some very excited University of Illinois students who came to retrieve it. You may enjoy the pictures taken by the balloon's camera on its short flight. The boys refer to the "keen-eyed man in IN" who found the balloon. I think it's more the case that P, like Saint H, is so familiar with his environment that he notices things; he doesn't necessarily have to "see" things to register a difference in his mind. Since he refused a reward the boys brought him a "Chief Illini" statue as a thank-you; I'll look forward to seeing it when we go visit next month.

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Monday, May 17, 2010

Actually, Mr. Yuk Is My Enemy

I sent a message to Dr. G and Nurse Shari last night. I'd spent that truly miserable week with nausea and vomiting, though never so bad as when I was on Sutent, and had to finally give up on the sulfa drug rather than spend all my time in bed or the bathroom. Some of the nausea and stomach upset persisted until early Sunday morning, by which time I felt so rotten that I curled up in bed and stayed there quite late. When I got up I was still so woozy that I just couldn't face eating or taking my dose of Votrient, so I didn't take it.

Surprisingly, within a couple of hours my stomach had calmed, and the weird swallowing problem I've had for over a month had gone away. My appetite returned, and I was feeling pretty fabulous for the first time in a long time. It's funny how it's borne in on one, by the absence of symptoms, how quickly one can feel better - the misery becomes a distant memory in no time.

So, I thought I needed some advice from my medical professionals - should we consider lowering the Votrient dose? How much of this could be blamed on the nasty sulfa drug? Was it possible for symptoms to disappear so quickly, or was I just so relieved to feel better that I was hallucinating? Would they condone lowering the dose or would they want me to stick it out until my first scan in June?

I called Nurse Shari in midmorning as I'd not heard from her. Turns out Dr. G isn't due in until later today, but she was able to give me the following tidbits:
- The nausea and vomiting was almost without doubt due to the sulfa drug, as it's notorious for causing severe stomach distress. I should add it to my no-no list and forbid any doctor from giving it to me again (my inclination exactly, and thank goodness there was no hesitation on that decision)
- The remaining symptoms are probably due to the Votrient and she suspects we will reduce the dosage level. All I have to do is wait for Dr. G to arrive and have time to decide course of action with her, and they'll relay to me.

I really enjoy participating to this level in my own care - perhaps it's perverse in some people's view, but good heavens! I feel like I have some control over what's happening. Why persist in misery just because "that's what I was told to do"? That may have been the traditional approach to medical treatment ("Sit quietly and take the nice medicine, that's a good girl!") but I certainly have no use for it.

I am thrilled to report that, after several years, barn swallows have located one of the brackets Saint H placed on the internal fascia of the front porch. They are placing a careful array of mud pellets for a nest, right in view of the living room window. Cola is absolutely fascinated. Our house is becoming a handy roosting spot for the barn swallows; this morning I was serenaded by a throng of them waking up from roosting on the roof. A raucus symphony, indeed, but one of the most welcome sounds I can think of.

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Wednesday, May 12, 2010

Mr. Yuk Is My Friend

Well, it's been an interesting lapse. I developed a salivary gland infection at the end of April (my second in a month) but fortunately was able to get in for an appointment with one of the ENT guys quickly. I'm choking down 500 mg of a sulfa drug twice daily along with Compazine to alleviate the nausea.

At this point I have virtually no appetite; I haven't really been interested in food for about a week. I don't believe it's the Votrient; I'd much rather blame the sulfa drug in hopes that it will stop eventually! You may wonder, "Why sulfa?" Well, as time went on and I developed more and more serious infections from surgery and the like, I was being pumped full of antibiotics. Unfortunately I got hit with side effects pretty hard. I have a list of about 10 allergens now, but at the moment none are sulfa-based. So I guess that's my "drug class of choice" for the time being! And, much as I hate to admit it, it does seem to be working and I'd rather not be sporting an infection.

We've had killer weather too, alternating between hot and dry, and cold and windy and rainy. It's the type of system train that guarantees uncomfortable nights and difficulty breathing. I'm back to sitting up on the couch and snoozing, rather than trying to breathe all night lying on my back. I know it could be worse; we could be flooded. Saint H led a hike in Myers Woods last Saturday. It was damp and chilly but doable.

Saturday night we trekked to Columbus and huddled in a tent venue with 175 other people for the spotlight concert of the Columbus Folk Music Society's annual Central Ohio Folk Festival. My musical hero, James Keelaghan performed for all his chilly friends and warmed the evening greatly. Keelaghan is from Winnipeg, his voice is pure, his poetry unmatched; all in all his music has over the years given me great hope and solace.

We lost a good friend and member of the Renal Cell Networking Group; Gale was diagnosed in 1995 and was always quick to prefer surgery over drug therapy. She was a great-hearted lady; Saint H knew her from their shared times in the 1980s with the Ohio Wildlife Center, and she loved all animals, particularly dogs and horses. Gale and I shared the same birthday, too.

Our local friend who has battled brain tumors for 25 years is nearing her end; she's at home under hospice care. I'm nearly finished with a baby sweater for the granddaughter she'll never see. I always feel that I'm doing something worthwhile when I'm knitting for little ones.

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