The pain in my arm is excrutiating at times. It comes and goes, but mostly comes and stays. It hurts/aggravates to write/type so I won't be updating much until I've healed from surgery on Oct 3rd. It's the 3rd, not the 2nd. And who knows how long after that till my arm feels better.
I got bad news when I met with my docs the other day. They say there is tumour, behind all the scar tissue (what we were worried about in July!), that they can't take out. This was news to me because I have been told 3 times there was nothing there, but now all the sudden there is? I am pissed, I don't understand. I have had my imaging sent to my London surgeon for a second opinion which I won't get till next week, after my surgery. Did I just confuse you?
My surgery Tuesday will be to remove the one tumour that is more on my side, kinda where your bra strap goes, so that they can keep it and maybe use cells from it in a vaccine trial that is set to begin at PMH in 6 months to a year. I am still fighting to have 2 other tumours removed as well (one sort of on my shoulder/back armpit, the other on my arm about 3 inches down from my armpit), as I know these are operable for sure. I am in so much pain. My arm bones ache, the skin on the back of my arm feels like it's on fire, my neck is kinked, my arm is useless. Pain meds are helping but not close to entirely. I got an oral morphine prescription today, and it is barely helping. This is all because these tumours are pressing on nerves or growing into nerves (hope not the latter).
I will be starting Interleukin-2 (IL-2) in a month or so which is a grueling immunotherapy which will have me staying in a hospital in Buffalo for 5 nights, home for a week, then back to Buffalo for 5 nights and possible this cycle will continue if the treatment seems to be working. My hand hurts too much and I'm too tired (and bored of this shit!) to talk more about it. It is going to suck, but there is about a 5% chance (yes, you read that right) that it could give me long lasting remission. There is a 15-25% chance it will give me short term remission. The reason I have to go to Buffalo is because though the drug is approved in Canada, they don't administer it. I don't want to get into the politics of why, but it looks like one day it will be available here, just not yet. In the meantime, the gov't pays for my treatment in the US but my family has to pay for their hotel and food so they can be with me while I am in hospital.
How am I doing? Besides the pain, fine I think. I am in survival mode. I am living one day at a time, I do not think of the future... I am incapable of it, I think it is too painful. The mind does what it does, it makes things manageable. It's truly miraculous.
I feel like I got dealt some shitty cards here, but I also feel like my life is a miracle and I am in love with it. Now, I have to figure out if I mean that, or if that is the morphine talking.... I think I mean it. I am blessed. Whatever happens, I will be ok...