Aug
26
Yesterday was one of those great days: In the afternoon I met my niece, who is perfect and amazing – just a miracle of life wrapped up like the world’s most beautiful burrito in my arms – and in the evening I ate lobster with a friend who always makes me laugh and inspires me, having herself recently kicked cancer’s a**. Needless to say I slept soundly. Smugly, even.
Alas, this morning I came screeching back into cold hard reality at full-speed – right back into the routine that somehow never becomes routine:
- 9 a.m. needle to the port in my chest – check
- Extraction of 6 colour-coded vials of blood – check
- ECG – check
- IV fluids & drugs for about 2 hours – check
- Review bloodwork results with my nurse: all counts low, especially platelets. Am instructed to rest as much as possible, and to avoid getting any deep cuts or gashes. Cancel my sword-fighting plans this weekend – uh, check
This evening I’m scheduled for my first CT scan since beginning the clinical trial. They’ll scan everything from head to pelvis, looking for any sign of further metastasis (please, no more) and of course, measuring the growth of the ol’ neck lumps (please, no more than 20%).
I’ve already choked back half the gigantic bucket of nasty chalk-juice, which, by the way, some jerk had the audacity to brand “E-Z CAT” – probably a relative of the jerk who came up with branding Fox News “fair and balanced.” Now I shall proceed to eat everything in sight before fasting begins. Then I’ll nap, if I can possibly quiet my mind, and later my husband will take me back to the hospital for the freaky sci-fi space capsule scan.
And then?
Well, then we just wait. Probably until Monday. We wait and try to enjoy our weekend as much as possible, hopefully avoiding “deep cuts and gashes” or any manner of flesh-wound, and also trying not to think too much about the results. This of course is like trying not to breathe too much.
I really want to stay positive and only think of good things (my family, my new niece, lobster dinners) but the truth is I’m terrified. Still, if there is something to know, I’d rather know it. Can’t fight it if you don’t know it’s there, right? And maybe there just won’t be any surprises. Maybe the test drug is working, in spite of seemingly enlarged neck lumps, which yes I have stopped touching all the time. Mostly.
Anyway, on with the dragon hunt. Again.
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?
Aug
06
My neck lumps are growing. Or at least the one on the side is. There are two, one deep in the neck right around the scar where they biopsied the original lump, and another one poking out at the side. They used to be lymph nodes and are now tumours, and frankly they scare the hell out of me so I touch them all the time to see what they’re up to. Evidently they’re up to no good.
Problem is, yesterday I found out that if my tumours grow by more than 20% I’m off the clinical trial. Finis. Apparently 20% growth means that my body is not responding to the study drug and in a clinical trial if your body isn’t responding, it’s sayonara study subject, next please.
When I found out about the 20% growth cap, the internal panic-valve immediately opened and the inner freak-out commenced. Off the study? No more tumour-targeted miracle drugs to precipitate cellular suicide? No more sci-fi magic potion?? It would be too overwhelming a disappointment to contemplate, or even to be able to call a “disappointment” without grossly understating what it would do to me psychologically.
I know there are other options, like chemo, radiation and possibly even surgery – all of which I have previously had, and in spite of which my cancer metastasized. The bottom line is that I’ve put so much faith in this study and been so excited to be a test subject for this new generation of cancer drugs, that going back to more conventional treatments might feel a little like trading smart bombs for mustard gas. Whether that’s a warped perception (wouldn’t be my first) borne of mistrust and frustration that the cancer metastasized is a question for another day. Today I’m about 20% more concerned with just staying on this study because, whatever the treatment is, I just don’t want to be declared “unresponsive” again. It terrifies me.
So these bumps have got to stop growing — or, preferably, start shrinking. They just have to. Any suggestions? I’ll do anything. Rub voodoo salves on them, drink yak urine, hold crystals up to my neck, whatever, I’m all ears. And neck bumps.
