Thursday, September 28, 2006

Ow

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...

6 Comments:

At 10:45 AM, Blogger Heather said...

Honey, you're going to love your life.... then hate it.... then love it again and again before this is all over.

What can I say? This just sucks. I feel so bad for you... Hopefully they can resect some of those tumors and then get that IL-2 into you and kill off the rest of this crap so you can get your life back.

Thinking of you,

Heather

 
At 3:20 PM, Anonymous Anonymous said...

I am thinking of you too, Sarah! So sorry about the bad news, but I am glad you are able to keep "living" your life while you get thorough this. Please know that there are many, many good wishes coming to you from some girl in Oregon!

Jennifer
jhammer@oregonparc.com

 
At 7:04 PM, Anonymous Kim said...

Yep, Sarah, you will be okay. How could you be anything else in the BIGGO scheme of things? (The Buddha said so.)
Besides, I think a lot about statistics these days. 5% for IL-2, eh? My original onc told me I had a 3% chance of progressing from stage 1 to stage 3. I fooled him and here I sit, stage 3 and all. So, using that logic, 5% is huge.
Tears are in my eyes...you not thinking about the future. Been there, done that. So happy to have the life I've had. Survival mode does provide a certain clarity of thought that most folks never have at any age. Make us lucky in a strange way...
Here's to both of us getting our dreams back.
Sending you the very best thoughts,
Kim in Alabama

 
At 8:57 PM, Blogger Carver said...

Sarah,

I am so sorry you are in so much pain. It really bites and I hate that for you. You have been dealt some lousy hands but the fact that you see your life as a miracle and love it, is to me more important than anything. You are brave and kind and I wish you the very best possible response to your upcoming treatment. I also think a little healthy anger doesn't hurt and you are certainly entitled to the anger you've felt. I think it's great that you can express it all, the good and the lousy.

As ever, Carver

 
At 4:56 AM, Anonymous JanetteT said...

Looking for the correct words to express what I think...
Hold On Tightly..Really. Also, don't give up any hope.(please).
I think that this is just a speed bump in a long journey.
You are such a strong spirit.
If you need an ear or a hand to hold on to..I am here.
Janette from Holland

 
At 10:33 AM, Anonymous Anonymous said...

You're in my thoughts and prayers during this fight with cancer. You're an incredibly strong woman and I know you're going to pull through this.

I caught this post on Hitched and wanted to lend some support. I come from a family who has had lots of experience with cancer. Please keep us updated with your operation.

Judy

 

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