Friday, September 22, 2006

Got another email from my surgeon. Seems my "team" has all banded together and I am to meet with them on Tuesday. That's me, Derek, Surgical Onc, Medical Onc (chemo doc), Radiation Onc, and probably more than one of each. I am to have a CT scan in the early afternoon to rule out further metastisis (spread), then we will hash out options and make some decisions as far as treatment. This is great news, usually they meet and talk about you when you aren't there. I've never heard of them all getting together at the same time with the patient.

I like that they keep using the word "aggressive"-- as in "aggressive approach", "aggressive treatment", "aggressive surgical options". I think they got the point that I'm not playing the wait and see game. They say that are "extremely concerned" by the rate the disease is progressing in the radiated area. Ya, me too. I wasn't statistically supposed to recur there. Somewhere else yes, eventually, statistically, but not in the radiated area.

It just makes so much sense to me that when I recurred outside the field of radiation in December '05 and my surgeon, thinking she would do me a favour by using my old excision point and not create another nasty scar for me which would have been across my chest, re-entered the radiated area and dragged the new tumour back out through the old scar. When she dragged it out, cells definitely would have broken off, re-infecting the radiated area. Also, that tumour barely had clear margins, I think it was less than a millimetre clear which is nothing. But what do I know, I was an English major (believe it or not. I didn't say I did well!)

Anyway, it's plan time. Action time. I think they are going to re-stage me to stave 4. But I could be wrong there. Whatever, it's just a number anyway. A label. It doesn't change what my body is doing. What is, is. I mean, if the CT shows mets elsewhere than I am definitely stage 4. If not, then the staging is a bit murky. I'd post the staging charts, but I don't want to see them right now. As they always have survival stats attached to them. I know them by heart, but just seeing them in print or hearing them makes me shiver. I'm kinda at this weird borderline stage because the disease is definitely spreading, it just isn't spreading far. But it is spreading fast.

Oh, I found another lump today on the inside of my arm, about 3 inches from my armpit. It's deep, but I can feel it. So that makes the count I can feel up to....four.

I absolutely cannot believe I am at this point. My mind can't wrap around it. Will it ever? I don't know. The times I cope the best is when I can convince myself this isn't me I'm taking care of but someone else. I feel like there are two me's. The healthy me, and the cancer patient me. Hence, my life between Wonderland and Cancerland. I feel like the real me is the healthy me. I identify as healthy. I do not recognize this person who is supposedly sick. I can go through the motions and research and go to appointments and takes treatments, but I don't feel like it is for me. I just can't believe this is me. It is the most bizarre feeling. A twilight zone. I suppose that is what is called dissociation or is it disassociation? A coping mechanism. I don't want coping mechanisms, I don't want anything to have to cope with. But here I find myself.

Jeez, I just whine don't I? Poor me. I guess that's why this blog is good. No one hears this shit in real life. The thoughts just roll in my head 24/7, but no one hears it. I don't want anyone to hear it. I don't want others to feel my pain. I don't want to say my fear out loud because then it seems more real.

Derek has been buffering a meltdown every 1-3 months for the last 2 years. That was pretty good I think, considering. But since this last turn of events I've been having a meltdown daily. Except today, I think this rambling incoherence might be the equivalent of a meltdown though. What would I do without Derek? How is he so strong? It breaks my heart that I am breaking his heart. It breaks my heart that he has to worry, that he has to see me suffer. That he will see me suffer more.

Ok, pity party done for tonight.

On a happy note, we tried out a new Japanese restaurant tonight for dinner and it was super delish! We both ordered the vegetarian bento box and it was the biggest bento I've ever seen with veggie maki, tempura (no egg in the batter, yay!), this mashed potato thing (japanese?), miso soup, salad, veg gyoza, rice! What a feast. I ate the same amount as Derek, as per usual, no wonder I have a little pooch and a J-Lo butt. It's worth it to be able to eat well! I think eating is my favourite passtime.

I also finally got around to tidying up the office today. The desk has about 6 months of papers/bills piled on it waiting to be filed. It feels so much lighter in here now with those stacks not staring at me.

Oh, and the parking ticket I got outside Toronto General last Sunday was waived because apparently if you call to dispute, there is a one time waiver for first offenses! I was all ready to dispute and took pictures of the street signs but had no idea how I was going to be able to fight a ticket in another city without spending more money on gas to get to court than the amount of the ticket. So, that was a pleasant surprise.

Well, it's late and I have to pee so I best say goodnight. Goodnight, sleep tight, don't let the bed bugs bite.


At 2:18 AM, Anonymous Janette T said...

Wow. I can't beleive it, everything that you have been through recently. I feel for you.
Do you wake up some times, with like a mad thump on the head,a sharp rush of reality, thinking, Holy Shit I can't beleive this is actually happening. I understand what you are saying about the "two you(s)". Listening and being here,
Janette (T)

At 3:56 AM, Anonymous JanetteT said...

I forgot what I wanted to say regarding my previous message.
I am so truely inspired by your strength and 'strong-head'. Keep it up. (please)
Hugs incl.

At 4:54 PM, Blogger Carver said...

Good luck with your big meeting with all the docs tomorrow. I like hearing those words, aggressive. Been thinking about you and wanted you to know a bunch of good thoughts are winging your way. I hope your doctors and you, find the very best treatment for you. Keep fighting for yourself, you are worth it. I respect the way you are handling all of this. I wish I had the words to express it better. Best wishes, Carver

At 6:21 PM, Anonymous Anonymous said...

Sarah, please email me regarding your mpip post and coming to the states. I am not in NY, but do live near a cmprehensive cancer clinic. You and your husband would be more than welcome to stay at our house if you could receive treatment kids, plenty of room. I would be so happy to help in any way, really!
Kim...stage 3B

At 12:28 PM, Anonymous Anonymous said...

Hi Sarah,

I've been following your MPIP posts and your blog for the past little while. I live in Ottawa. SO if you decide to come up here for and your husband will have a "built in" support system. My husband spent TOO MUCH time at the ORCC over the past four years. We can show you all the ins and outs.

Carolyn Blanchard
Ottawa, Canada

At 5:39 PM, Anonymous Anonymous said...


Just thinking of you and hoping for good news! I was so inspired by your attitude to look out for yourself if your surgeon is falling down on the job. Good for you!



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