Health Update: science fails, provincial drug coverage, and melting butt muscles

It has been pointed out that I haven't done any sort of update in some time. I haven't got anything insightful or interesting to say but for anyone who hasn't talked to me directly and cares to be in the know, here it is.

Everything since April

This past April I had finished my chemo and radiation, and was scheduled to have a hysterectomy, which was to be the final step in my treatment. When I went for my pre-op blood work, my creatinine was inexplicably high and I was sent for an ultrasound to check my kidney function.  My kidneys turned out to be totally normal but while I was there, the tech asked me if I would hang around for some extra imaging; they had ultrasound vendors there that day and she wanted to scan me on all machines for comparison. Being more agreeable than the 85 year old man the next curtain over who really had to pee, I stayed in the name of science. Seeing as how my kidney was normal and boring, she decided to scan my liver to check out the spots we'd been monitoring.

Even though the liver spots had been stable throughout my chemo, now they were bigger. The universe did me a solid that day because without that high creatinine, and the aptly timed ultrasound vendor, I would not have had my liver spots checked until after surgery, and goodness knows what state I would be in.

So, I had another CT scan, which revealed 6 total spots (formerly only 2), and I was referred to a liver surgeon who determined it wasn't possible to just cut them out (since it was likely that they would miss some that were not visible on the CT). I had a biopsy (a strange procedure where you are required to hold your breath while they stab you so that your liver doesn't move....) to confirm that it was indeed the same cancer (SCCC), which it was.

After a referral to a new oncologist with experience dealing with matastases and non-reproductive parts, I got started on a new chemo regimen. In the meantime, I signed up to have my tumor sent to Princess Margaret in Toronto to have my DNA sequenced. This is a relatively new thing where they look for the mutation that caused your cancer and if they can find one, sometimes there is a targeted therapy for that mutation.

The last couple of weeks

Last week I found out that my chemo wasn't working. Yesterday I found out that they could not find an "actionable" mutation. Ballsack.

So my last ditch effort (well, not last, but the last thing that I have any confidence in presently) is to try a chemo cocktail that has worked for a few women in my support group with my rare breed of cancer.

Unfortunately, this chemo is not covered in Ontario by OHIP. Our province/country is very good at covering the costs of cancer treatment, for the most part. The issue is that it approves coverage for drugs for which there is evidence of curing the disease. Unfortunately, lots of drugs only have evidence of extending life (for a matter of months rather than years), especially newer drugs, and these drugs are not covered. In addition, it matters what type of cancer you're talking about, and sometimes even what drug combo; I can't go try a chemo that worked for someone with breast cancer without some evidence that it will work for my type as well. This is an extra problem for someone like me with a rare type, where there are no trials to accumulate said evidence because A) the funding isn't there, and B) it is difficult to get enough of us in once place at once time to actually conduct a trial. While a sample size of 3 is sufficient evidence for me to want to try this chemo, it's hardly scientific.

Incidentally, that is one reason we started Love the Snatch Foundation, to raise money for a fund at MD Anderson, the only place that is trying to do research that might end up saving my life.

So, my oncologist is arranging for me to have this promising cocktail at a private clinic, which bothers me on principle (two-tiered medical system and such), but I have no choice if I want to try them. Fortunately, I think my private insurance is going to cover 80% of the cost, which is AMAZING. This still leaves ~$1000 per cycle for me to cover (I have no idea how many cycles will be necessary), but that's a heck of a lot better than no coverage at all.

In other news, I am also looking into cannibis oil, which is an extract from the marijuana leaf and is taken orally in pill form (not smoked, nor eaten in brownies :). There is science for anti-cancer effects (not just treatment for nausea) out of Italy and Spain. We never see it here in North America, but I suspect this has more to do with the drug culture than with its efficacy. Regardless, it is a rather easy thing to do with relatively little risk (I'd rather be high than poisoned by chemo, thanks very much), and I'd feel silly not trying it if it turned out to work and, ironically, I can claim it on my taxes. I am presently obtaining my license to possess and get it ready made as I do not relish the notion of brewing the stuff on my back porch....

Edit: So, apparently cannibis oil is still illegal in Canada. I can get my medical cannibis note all filled out by my doctor, but the new licensed distributors are only allowed to sell me the dried weed. So, what health canada is telling me, is that I have to either smoke it or vaporize it, I can't legally extract the good bits and put them in a pill, which could be tested to know it's exact contents in order to maintain a constant dose (and in order to get a sufficiently large dose to have therapeutic effects and not just solve my nausea). Awesome. This article sums up the current situation nicely.

In OTHER other news, I'm still keeping up with my crossfit! Although my butt muscles have ceased to function properly and my ass has visibly disintegrated. My pants are embarrassingly baggy, I can hardly squat my own self, nevermind a bar, and sometimes when I'm walking around my legs randomly buckle under me. My arms have remained relatively less affected so I'm currently working under the assumption that pelvic radiation has affected things somehow, although the effects seem to be somewhat delayed as I did not notice debilitating weakness for several months.

After bursting into tears in the middle of the gym when I couldn't get back up from a squat, coach Jen has taken it upon herself to find me interesting, effective, and less depressing alternatives. Every workout now contains a heavy sled push, sprinkled with whatever torture device Jen devises for that day. This week, it was a rope climb machine, which was much safer than actually climbing (since I never know these days what my body is going to manage), but most definitely just as effective for the upper body and core, if not more so.

I look like an eyeless flukeworm here but, you get the picture :)