Can’t win for losing

I never did finish the story about my surgery. Or write about the infection I faced afterward, and how it left me completely drained both emotionally and physically. I didn’t write about a lot of things I wanted to after that last real post on December 22nd because, once again, everything I knew about my situation was thrown out the window and I had to relearn everything I had come to know and expect over the last few months. I’m getting good at it, I think. I don’t expect things to stay the same for very long now.

I went for my three-week post-surgical check up with the Surgeon of Sunnybrook on the 21st of December. During this two-minute visit, I learned why my oncologist at PMH had warned me about The Surgeon’s bedside manner. After declaring my incision to be healing perfectly, he told me that “the pathology came back, your cancer is now considered high grade so you’ll need chemo, though it’s possible your oncologist at PMH might have a different plan, any way she has the information, Merry Christmas.”

I said, “Oh? OK, I’m OK, this just wasn’t what I expected, but I’m OK,” as though he had asked how I was doing. I really didn’t want to cry in front of him and I brushed a couple of tears away while I put my jacket on. And then I called my oncologist’s assistant at PMH and asked her to move my follow-up appointment up by a month.

So here we are back at the beginning. I see my oncologist on Monday, and it is almost definite that she will agree with the surgeon’s opinion that I should have chemo. It will take a fairly strong argument against chemo at this point to make me choose doing nothing — and the more I talk to other oncologists (as I’ve had the opportunity to do recently, more on that in a bit), the less likely it seems that she will offer up a watchful waiting approach now that we know the cancer is considered high grade, and thus both more aggressive and more likely to respond to medical treatment.

Even if watchful waiting is offered to me as an option as valid as doing chemotherapy, I don’t know if I am mentally able to do it anymore. I have been bandied about so much in the last six months that my head is spinning. I really just want someone to tell me what to do, and I want there to be an action involved in that instruction. I don’t want to be told to simply wait. I guess what this means is that I want to do chemotherapy and I want my oncologist to unequivocally to tell me to do it. I’d really love to deal with absolutes right now.

I spent a good portion of the last five days in and out of hospitals when the infection I was dealing with back in December reared up for a final hurrah. And then a CT scan I had in the ER at Toronto General over the weekend reported “peritoneal tumor something-or-others* in the pelvic cul-de-sac largely unchanged from previous imaging.” Given that the surgery apparently removed all the cancer, evidence of tumor something-or-others was pretty troubling; it suggested the cancer had already grown to a visible size in only five weeks. The fact that the gyn/onc on call wouldn’t give me a copy of the report convinced me even further that there were new tumors and that he really didn’t want me reading the report (which I snuck a peek at) and getting upset. After talking to oncologists at Sunnybrook, however, it was explained to me that the something-or-others were referring to the altered appearance of the peritoneal lining itself, and not actual tumors. Basically the cancer has caused the lining to thicken in places, and that will never go away. However, if it thickens further, it could indicate that the cancer is growing again. Or so I understand.

Long and short of it, there is no new disease visible. But if there are cancer cells floating around — and there almost definitely are — they are more likely to cause trouble given the chance to settle in and make themselves at home in my body than if they were low grade cells. The funny thing about those three or four days when I thought there might be new tumors is that the idea of new tumors didn’t really concern me. I had already resigned myself to the fact that I would most likely need chemo, and the only way to treat new tumors this soon after surgery would be chemo, so it wasn’t information I had to adjust to. It didn’t change my situation one way or the other.

It’s what’s hardest for me, this constant changing of what I know. I just want a plan, something I can stick to for more than two months. Since July, I have gone from thinking I would have surgery and chemo to thinking neither were an option to being told that chemo was an option — though not a good one — if I wanted it, to being told I could have surgery but that there was no need for follow-up chemotherapy, to having surgery that removed all the cancer, to being told the cancer was high-grade not low-grade, to being told I need to have chemotherapy, to thinking the cancer had grown again, to learning it hadn’t grown again, but four gyn-oncologists at Sunnybrook think I should have chemo since the cancer that was taken out is still considered to be aggressive.

God help me if my oncologist at PMH gives me conflicting information. It’s possible my head will literally explode. It’s not the cancer that’ll kill me, it’s the stress of having cancer that’ll kill me.

And yes, it’s taken me awhile to update everyone about this newest news. Because I know it will lead to more questions — questions that I won’t be able to answer until at least next week after I see my oncologist. Because I have given out so many updates to so many people over the last few months that no one can keep the information straight anymore. Hell, I can barely keep it straight anymore. Because it was the holidays, and I really didn’t want my friends and family to have to think about this next hurdle. Because I don’t even know how to feel about any of this any more. Remember how I said that I didn’t want congratulations on any news I received? This is why. In some ways, having a more aggressive cancer is a good thing — it opens up my treatment options. But it does that at the price of having a more aggressive cancer. And thus the title of this post. I can’t win for losing.

A lot of you have sent me emails or left me phone messages asking how I’m doing, or expressing happiness that the surgery was a success and that I seem to be recovering nicely, infection aside. And I haven’t responded to most of you. This is why. I wasn’t ready to talk about this, and there wasn’t really a good way to talk about the surgery and how I was recovering without mentioning this new turn of events. So I’m sorry if I’ve ignored you. It wasn’t personal.


About Alicia Louise

I'm a writer, editor, fact checker, storyteller, events organizer, chronically busy yet endlessly lazy, mildly neurotic (though I keep the neuroses well-hidden, one hopes) 32-year-old with recurrent ovarian cancer. I like people and good writing and straight talk. I have a hard time feeling sorry for people, including myself, but the people that I love, I love passionately; one may even say creepily. I try to keep that mostly to myself. I'd like to be charming, but I'm usually just a mess. I'm like a gull slamming into your windshield.
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2 Responses to Can’t win for losing

  1. Terri says:

    Motherfucker, Alicia. I always feel weird/intrusive about reading/commenting on your updates b/c we’ve never met for realsies, but I care so very much about this and about you, and you are an extraordinary writer and altogether amazing inspiring cool person. I know the inspiring part is usually cliched bullshit, but I read you and in a weird way look to you as a mentor, as a (former) cancer patient, as a (wannabe usedtobe) writer, as the type of person I want to be. You make me want to be better. And I so desperately hope upon hope that you are able to get the absolutes you need, and some stability in your expectations for at least a little while. -T

  2. leeshlou says:

    Aw, Terri, you’re makin’ me blush. And don’t feel weird/intrusive about reading and commenting. It’s no weirder or more intrusive than me gettin’ all up in your facebook postings. Which I do. A lot. Teh internets were made for strangers.

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