My mom has been sending me postcards from a durer collection as a countdown. The postcards are from when I was born. Or something like that. She has been putting pressed flowers on the back of them. I’m down to half way through the fourth to last week.
I’m starting to exhibit some really startling side effects. Violence in my sleep. Talking in my sleep, and saying things that are *not nice*. It is really crazy to be out of control of my basic non-craziness.
O got me the cutest band aids. She had it all wrapped nicely, and said that “hopefully these will be the last of these we will have to buy for a while” As I keep having cuts that don’t heal, but soon, very soon, a small cut will heal in a few days, not a few weeks.
Jude the Obscure, Gertrude Jekyll, Just Joey, Peter Mayle, and Graham Thomas hopefully will still be performing when you arrive. If not, there are lilies in the wings.
5 more weeks
mom & dad
My mom has been sending pictures and postcards every week during this last countdown. Here are this weeks five roses. I might have gotten the wrong names on the wrong flowers.
So I scratched it. Really hard. I didn’t even notice it. My fingernails are so thin they are like razor blades.
Hardest week in a long time…
departure for portland is creeping up fast! i’m going to portland at the end of the month and staying through mid august. after friday, i only have six more weeks of injections. my drs are all v positive. they seem really genuinely happy when my scans come back negative – as if they really thought there could be something on them. my oncologist doesn’t want to talk numbers, and always gives me the crazy ranges like 5 to 35 percent. i asked my derm to give it to me in plain language, and pull no punches, and he basically said that if i was going to relapse, it would have already happened. he says that he has two kinds of melanoma patients: the 60 year olds, who usually relapse w’in the first year, and the 30 year olds, who all survive w/o relapsing.
He told me the story of a guy who came in 5 years earlier w/ a massive melanoma on the back of his head — so close to his major lymph nodes. Apparently it had been bleeding for 6 months, and he finally came in to the dr. It was advanced stage III – in lots of lymph nodes. He had surgery and did the interferon, and 5 years later, is perfectly fine.
I have this *nasty* infected bug bite on my ankle: i couldn’t walk on friday, so I had to have an emergency trip to dr to get it looked at & get antibiotics. Spent the weekend in bed. Finally walking by Monday night.
Nobody told me not to do my regular injection, which I delayed from Sunday to Monday. (and I did go to the dermatologist Monday, even though i slept through that appointment and arrived an hour late — at 3:30PM!). Apparently the two drugs *do not* like each other. Or maybe my immune system is just that fucked.
I spent the night with a blistering fever, yet shaking with cold tremors. O said she almost threw me in the shower I was so hot (and kept asking for more blankets.) It was the kind of shaking tremor that you just can’t control. It sucked. I couldn’t sleep. Was up for good at 530, but couldn’t really move. Just sitting on the couch trying to meditate some of it away. then at 10am, I fell asleep, and slept all day. today I got up, and felt a good deal better, but still not great. And it has taken me 48 hrs to write this, b/c i keep getting nauseous looking at the screen.
On top of all of that, I left my syringe out – it has to stay refrigerated. I only noticed it late the next day. Two injections worth down the drain, er… sharps container. That’s about $1500 worth of drugs. Good think my co-pay is only $25 for a four pack… It is the only time my insurance has really stood out. That and major surgeries. Everything else they screw me on.
The other good thing is that because I had to do one week of half dose after I got sick (a good six or eight months ago), I have enough extra that I will be able to do all of my injections. I won’t run out.
It really is called Atlas Tongue. I found this out from my Psychiatrist, of all people. Yes, that is a giant crack in the middle of my tongue with raw flesh popping through. Makes it pretty hard to eat anything.