Dancing up to gamma knife

Dearly beloved,

I really, really hate the gap between a new diagnosis and when the treatment begins.

I'm scared and angry and grieving. I'd rather have cancer recur any place except my damned head. Short term memory is wonky, verbal is slightly wonky, balance is wonky, right eye is wonky, right hand and foot and now LEFT foot are wonky. I keep getting that weird twinge where it feels sprainy for a second, and then sort of goes out from underneath me. Like if you get up too quickly with your foot asleep. It would be smart of me to walk with a cane all the time, but I'm resisting it, in spades. No doubt when I fall and sprain an ankle I will smarten up.

One of my doctors got in touch with our local hospice on Friday, to help me. Among other things, they have support groups for kids and caregivers, and can assign a social worker for all sorts of other stuff, including financial advice. So we're exploring it. But for the time being I also want to continue treatment, and participate in clinical trials, because the neuro people now are saying I'm becoming a statistical anomaly. I can't use all the hospice services and continue active treatment at the same time.

Clear chest, but cancer cells crossing the blood brain barrier, little squid bastards. The next hump statistically is 2-1/2 years - half of us MBC survivors have croaked at that point. That date is April 5, 2011. Five years now is 40% survival, same as ovarian cancer, 15 years is 18.5% survival. That's a lot better than 3%, which it was from about 1980 until some time in early 2000. The 2005-2010 study looks a whole lot better. Three percent is the same as spontaneous remission - they all croaked by 15 years, except those lucky few who had the random spontaneous ice cream sundae.

I always ask for a best and worst case scenario, and although my oncologist generally won't go there, my dear primary care physician and radiation oncologist will. And the radiation guy, Dr. Harvey Wolkov, he's probably seen more of these than anyone else. He's hot shit, and a nice person and a geek, to boot. He has an adopted girl from China who is the same age as Tess, and he generally walks me down the hallway because we are enjoying our conversation so much. So he'll give me the straight dope about how people he's had in the past LIKE ME have done, and the range of prognoses.

The other straight talker is Christine, the head nurse at the infusion center who's been my boss nurse since back in 2005 when I started. She is totally straight, and gives me no bullshit. She's the one who said, "Chris, at this point it's not about getting healthy again, it's about breathing or not breathing." I laughed, and said by that standard I was doing FINE. It required a shift in perspective.

But she had one patient, diagnosed when her daughter was six, who wanted to see her girl go to prom. Did TWELVE rounds of chemo. And I thought I was tough for doing THREE. Now, I don't give a fuck about prom, but I have fairly strong motivation to get Tess first to 14, and to 18, when she gets out of high school.

I was in my cave for the last 10 days because basically all the docs who really knew anything were on vacation. How dare they have lives. My neuro guy was on vacation since August, so I saw the PA, whom I respect but don't particularly like, and she doesn't much like me. Condescending. When I argued with her about upping the steroid dose, she turns and said out loud as she typed, DECLINED RECOMMENDATION FOR STEROID DOSAGE. Snot. Now I'm up to 6 mg a day, but it pissed me off. So much for being proactive about my own health care. But then I got to talk to Stan, who is the coordinator of the gamma knife team, and he addressed most of my smaller questions about risks and benefits that you raised. They will be keeping me throughout the afternoon, to monitor the edema and such. Going home in the evening, not right away.

And right frontal lobe can affect executive decision making as well, so the doctors all have releases to talk to each other and Kevin if they see a sign of weird behavior. No credit cards or driving for this girl until further notice, and I'll tell you the loss of that autonomy is not a small thing. And drugs with mood side effects really, really bug me. I almost feel like handling chemo with all it's bleckiness and nausea and pain is easier to handle than the steroid, but I might not say that if I were in the middle of it.

Sucks to be me! (Just kidding.) Some days we cope with grace, gracias a dieu, some days we just cope.

I know I switch in and out of different coping mechanisms, and the website is a place for me to seriously indulge in displacement behavior. I tend to only grieve in private, that's why I so desperately wanted a week at Matinenda to myself. It worked, even though I had three days where I mostly just wandered around and cried.

We cope. Please let the next week pass easily, and bear with me if you come for a visit and I'm wearing a big princess dress. Playing dress up with the little girls, hanging out with the big girls, and doing ballet are what keeps me sane.

Love,
grundoon