Renal Cell Live!

Sunday, October 22, 2006

Dentally Challenged

A recent article in the AARP Bulletin, "Nothing to Smile About," highlighted the woeful state of dental health for retirees and people on fixed income. I'm lucky to be able to get dental insurance through my disability retirement. The coverage isn't great, though, and I've not yet used it in part because I know nothing about the dentists who participate in the plan.

I'm actually being pretty stupid about it - I don't like going to dentists at all, period. But I have an excellent, compelling reason to go and get a checkup at the very least. I take monthly infusions of Zometa to combat high blood calcium levels, or hypercalcemia. Cancer patients who receive bisphosphonate treatments like Zometa for bone-related complications can develop a delightful (ha) complication known as osteonecrosis of the jaw. This is, literally, "bone death" and generally manifests itself following invasive dental treatments, though it has been reported to occur spontaneously in some patients. The American Dental Assocation provides a summary article on this topic, and the Journal of Oncology Practice gives recommendations on dental management for cancer patients receiving bisphosphonates.

I have all my own teeth and have tried hard over the years to maintain them - 5 crowns and numerous fillings - but some of these "fixes" are 30 or more years old. I've had dreams about this recently. Guess it's time to bite the bullet (so to speak) and schedule an appointment, if only to put my mind at rest, eh?

Wildlife distractions - a kestrel has begun perching on the martin rack; the other night five deer flushed out of one field to another in front of the car as we drove up the lane; today a coyote loped through the pasture. Never a dull moment.

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Tuesday, October 17, 2006

Rotten Misery

Did I say something a couple of months ago about being warm, like a normal human being? I have some fleeting memory of that but right now it's hard to believe I ever made that claim.

It's been raining pretty steadily since late last night and now there are steady southwest winds driving clouds of fine, cold mist around the house. I don't think my hands will warm up again until August, and at the moment I'm not sure I have feet.

I've always had poor circulation in my hands and feet (low blood pressure for most of my life). That's been exacerbated since diagnosis and particularly with the anti-angiogenic drugs. Add to that the amount of weight I've lost over the past two years - I haven't got a lot of flesh for insulation now. It all equals, "Brrr-r-r!"

There's a discussion going now on the local NPR news station, WOSU-AM, on health. The current topic is hospitals and healthcare quality. Did you know there is a federal Agency for Healthcare Research and Quality? I didn't. Now I know - Thanks, public radio.

Thursday, October 12, 2006

Safety Caps

Remember the Tylenol/cyanide scare in summer, 1982? In its aftermath, "Press down while turning" didn't seem like a big deal to me. Sure, my mom complained about getting the caps off bottles and generally left things partly unscrewed once she'd conquered the initial seal, but I knew she had arthritis in her hands. That had to be the reason she hated those caps so, right?

Then came my own string of medical problems and crises. Long stays in the hospital, fatigue and convalescense left me tired and lacking in muscle strength. Suddenly I, too, was expanding my list of curse words and applying them to those @#$&! impossible-to-remove bottle caps. I might have been able to deal with them before, but not after -

Thank heavens for the "no safety cap" option! And some enterprising packaging genius has come up with a cap that serves both secure and non-secure needs. If only someone would solve the "impregnable blister pak" pill problem, I'd be completely happy.

Today's weather: cold and blustery, winds gusting to 40 mph, and even intervals with snow squalls. Brrrrr!

Saturday, October 07, 2006

Group Support

I'm lucky to live close to a Wellness Community facility. I'm even luckier to live close to a Wellness Community facility with an active kidney cancer support network that meets once a month.

I first started attending in May 2004, following my liver resection. It's a lively group of 10-15 members (yes, we are getting more members). When I first started attending I was the only female patient; the first couple of meetings everyone greeted Saint H as the patient, an honest enough mistake. Now, however, there are at least 5 women patients. The group includes members with diagnoses from the early 1990s to the present. We've all had at least one surgery; most of us have had metastases. We exchange notes on our conditions, our day-to-day feelings, our opinions of doctors and treatments and hospitals (oh my!)

We try to have speakers from the medical community every month if we can. As one speaker wryly put it, we are "frighteningly well-informed." But we all take comfort in talking together and learning more about renal cell. We stick together.

Friends and family are great supporters but it's great to talk with other patients - nobody else really knows what you're going through.

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Tuesday, October 03, 2006

My Lifeline

My needles neither flash nor click
They are wooden - light and strong in my hands -
And they whisper and glide as I work.
My fingers are neither supple nor fast
I work doggedly sometimes - how I hate to purl! -
But I make surprising progress unconsciously.
Knitting is my solace, my companion, my prayer.
Waiting is not endless, it's an opportunity
To be productive and enjoy the passage of time.


Sometimes I sit down to write and poetry falls out of my pen instead. Usually it's bad doggerel, sometimes it isn't. Anyway, good or bad, this is how I feel about my knitting. It's as much a part of my life as breathing is, and has been so for at least the past 15 years.

The weather is yo-yoing. I'd settle for six months of October, personally, but it's not up to me is it? My old breathing troubles are coming back for the nonce with each wave of fronts. Solution: sleep as much as I can, use saline spray, sit up and knit or cook. I probably don't sleep any less than normal, but I'm more conscious of being unable to sleep this time of year. At least I have things to do.

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