Renal Cell Live!

Saturday, July 10, 2010

On Treatments and Loss

The schedule questions finally got resolved with a couple of phone calls on Tuesday, 7/6. Julie, the Social Worker in radiation oncology, called me mid-morning to say that Hope Lodge had a room for me starting Wednesday, 7/7, and had Dr. V's office called me? If not she would call them, verify the starting date, and call me back. As they hadn't called yet, that sounded the best option to me. She called me back about half an hour later with the news that I was to undergo my dry run on Wednesday, immediately followed by the first treatment, and that I was confirmed at Hope Lodge through 7/21.

I called Saint H and we hustled to make arrangements for furry childcare, and all the usual "leaving-town-for-3-days-with-less-than-24-hours'-notice" tasks... It's wonderful to have a known address for the duration, as we can leave things in place when we head back home on weekends to replenish clothing.

I haven't figured out whether I'm going to see near-immediate benefit, but I do know that my back pain has diminished somewhat. I'll take that, I think.

We received word that the second founding member of the Renal Cell Networking Group, John Gillivan, had passed away this morning. His brain mets came back and he lasted only a few days in ICU at the James. John and his caregiver, wife Susan, were instrumental in my being here still. When I first joined the group, I was trying to figure out what next course of action should be (remember this was in 2004). I had almost settled on starting with a clinical trial when they pointed out that one had to try and fail at high dose IL-2 in order to be eligible for most clinical trials. If one chose to start with some other therapy, one would be disqualified for most drug trials and other medications. Luckily I listened to them, suffered through high-dose IL-2, and then when that failed me I moved onto trials and other drugs; "the rest is history" as they say. I'd have missed buying the farm, building the house, refocusing my life on what's important. This process of postponing a bad outcome has taught me what's precious. I'd not have missed these lessons for the world.

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Monday, July 05, 2010

Up In The Air

We're still up in the air about dates for the moment. We went up last Wednesday as planned for the simulation, and at the same time we hoped to get more details about schdule. Nothing, alas, seems to be so difficult as to get details at the moment - lots of things need to coalesce for all this to work out. I only hope that we find out more this Wednesday when we go in for the dry run.

I did break down and call the on-call oncologist at Cleveland Clinic yesterday afternoon; I'd been dealing with increasing amounts of pain, and the pain levels finally got beyond what I could tolerate. Turns out that I was, in fact, undermedicating myself - I wasn't taking enough of my pain killer, so I'm on a strict regimen to schedule the doses every 4 hours, 6 times a day. I think I can do it, as I've felt much better since starting this.

Today I went off to the county fair to pick up my entries. I received 3 first place rankings (the stole, the hat, and the baby sweater), plus 2 second place rankings (the socks and the vest). On the whole I was pleased, and the vest lost to friend M's Fair Isle vest ("Grant Street", Alice Starmore). It's a beautiful, beautiful pattern, breathtakingly well-executed, and she won Best of Class and Best of Show. Can't complain too much to finishing behind her!

Saint H and our friend R spent the day baling hay; I believe he said we have 120 400-lb. bales in the field, and we may get a few more scraped up from the remains. R has dairy cattle as does one of his friends, and they may be buying all this hay from us (woo-hoo!!) If we get a decent second cutting this year, we can put it up in square bales and keep it for our own animals. I wasn't sure we were going to accomplish a cutting at all; like so many others here, we've been afflicted by the weather; it's been too wet to get into the fields. Right now, even though it's above 90, it's not so terribly humid and it's not supposed to rain for at least a week. Great for hay, if nothing else.

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