Aug
20
Treatment yesterday. Knocked out today. Am in bed with tea… feeling flattened by the sad news that an ex-girlfriend of my husband’s died this morning. She had lung cancer. She was supposed to be getting married on Sunday. Too tragic. Maybe I’ll post again later when I have a bit more energy.
Aug
16
There is nothing really funny about being doubled over on a toilet enduring severe abdominal cramps and the accompanying vile effuse while reciting every known English obscenity, quite a few French ones, and one choice bit of Serbo-Croatian that my Uncle Misa taught me when I was 16 and which I find particularly satisfying to (mis)pronounce in times of trial and outrage. There is nothing funny about this scenario because there is nothing funny about mental illness, and in the grips of this latest post-treatment attack of the Screaming Trotskys I resembled nothing so much as one of those poor lost souls you see lurking in urban doorways, nattering and rocking away, uttering the occasional death threat while peering furtively out from their reeking person at the world around them with distrust and ill-will in their hearts. We’re talking spitting image, except I had a toilet and clean hair.
I actually took my post-treatment low even lower while I cursed and clutched my belly in the semi-darkness of my (thankfully air-conditioned) bathroom: I imagined everyone I know engaged in something really fun and perfect, like splashing in a clear blue swimming pool, lounging on a dock at a cottage, or enjoying a cold beverage on a sunny patio. This at least served to give me a series of mental targets for the more personal curses I was rattling off.
Now that I’m feeling all better (and have myself enjoyed the summer weather by splashing in a clear blue swimming pool) I’m feeling a little sheepish. I offer my post-crisis apologies to everyone – really I didn’t mean what I called you and you do deserve to enjoy whatever little moments of glorious summer weather you can this year, regardless of what circle of hell I might be trapped in at the time. Carpe Diem – seize the sunny summer day. Or in my case, Crappy Diem – seize the t-p.
Aug
14
lumps? what lumps?
I had this thought that if I gained a whole whack of weight the cancer lumps might appear smaller in relation to the fatness of my neck.
I already have a weakness for potato chips and the occasional cheeseburger. I could just go carb supernova – a strict diet of potatoes and pasta and all things battered, fried and buttered, rounded out with a daily tub of fois gras and washed down with cases of pop and kegs of beer. If I could keep it up for thirteen days (and not go into cardiac arrest) by the time they do the CT scan the lumps will look miniscule in comparison to my five chins. They may not even be able to find them in there.
On the other hand, it’s possible they have more scientific measurements than How big do the lumps look compared to her neck-fat? In which case I’d just be gigantic and lumpy and no closer to the goal of cancer obliteration.
Back to the drawing board.
Aug
12
So about this 20% business.
Today I am in hospital today for Cycle 2, Day 1 of the clinical trial, and I had a word about the whole 20%-growth-and-you’re-out thing with Naz, my incredibly competent, compassionate and sensible nurse.
She sat down on the bed and looked me in the eye, and asked in a way that I hope I remember to employ when reasoning with my future teenager: “Well, what would you want to do if the CT scan were to show that these lumps are growing? Would you want to continue with a drug that isn’t working for you?”
No, I admitted, I would not. I would however like the drug and I to be given a fighting chance of working together toward the common goal of cancer obliteration (apoptosis!) before we are ripped asunder. I’ve tried chemo and radiation, and now I’d like a fair shot at the wonderful world of HDAC-inhibitors. Perhaps they could just adjust the dose?
Negative. This clinical trial, as Naz explained, is at a stage where the dose has been firmly established based on things like toxicity tolerances and disease response, and they’re just not going to give me more than I’m getting right now, period. But they do want to give the drug a chance to do its thing, which is why they’ll wait a full two cycles to see if it’s working.
A full two cycles. That may sound generous but it boils down to just four doses total, next Wednesday’s being the last. The CT scan is already booked for the following week, August 26th. Clearly Panobinostat and I are on the clock.
Take heart: I actually think we can do this. I’m going to go with the idea that this is the beginning of a long and mutually satisfying relationship between me and Panobinostat, rather than a whirlwind summer fling. Bonnie & Clyde, Batman & Robin, Leanne & Panobinostat. I do the tough talking — Shrink, damn you. You’ve got 2 weeks to make like a couple of raisins and shrivel – and Panobinostat is the muscle.
Cancer, you’ve been warned.
So, while I’m anxiously rubbing* my growing neck bumps and freaking out about possibly getting kicked off my beloved Panobinostat study, it appears that in the U.S. they’re having so much difficulty getting willing candidates to sign up for clinical trials that it’s actually hampering cancer research.
(Luckily I’m too busy losing my mind at the idea that I might be taken off my clinical trial to digress into a rant about American doctors who choose not to even try to enlist patients in clinical studies for financial reasons.)
In addition to discussing the clinical trial conundrum in the U.S., the article also explained the reasoning behind the drug-therapy-first, surgery-later approach to treatment – which at least served to help me better understand why my lumps have been left in my neck.
It’s an interesting article, you can find it here: http://www.starnewsonline.com/article/20090803/ZNYT04/908033008/-1/HURRI
*About the neck bump rubbing: my husband opined that we should stop touching the neck bumps all the time. He says, in his French (and male) way, that we might be “arousing them” and encouraging them to grow. So funny — and maybe sensible?
