Trixieland

words about words

Archive for the tag “remission”

Breast Cancer: The End.

It is done.

What began with a lump almost one year ago is finally over.

From the diagnosis

Turdy the tumor ultrasound

Darth Turdy

Through six rounds of chemotherapy

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Rocking the chrome dome during Round 3

Surgery on my breast and lymphnodes

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Damn you, cancer!

and 30 doses of radiation,

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this blog has been a place for me to collect my thoughts, sort out how I felt about what was happening to me, document the experience for the future, and sort of inadvertently–though in the end most importantly–help fellow cancer patients feel they weren’t alone.

I went from this:

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1st dose chemo. May 5, 1015

To this:

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Today. December 30, 2015

Thank you for going along for the ride. Thank you for not turning away from the ugly realities of scars and chemo shits, peeling nipples and weakness, doubt, and flat-out terror. You kept me going, readers.

What’s next?

First, the end is not the end. The day after my final dose of radiation, I was back at the hospital for an echocardiogram. I’ve got Herceptin infusions every three weeks until May. I’ll start a five-year hormone therapy treatment mid-January, and in the interim I’ll have a bone-density test and another MRI on the “good” boob. I’ll have diagnostic-level mammograms for the next three years. I told my daughter all this isn’t fighting cancer because the cancer is gone. It’s more like treatment that says “…And STAY OUT!”

IMG_4398Because of all this ongoing…stuff, it’s been sort of hard for me to call this “the end.” Then I received a fancy bottle of champagne from my dear friend Sara. I mean, how could you NOT celebrate with this? So I decided to stick a pin in this moment and create a milestone. This is the end of one journey. I made it. And now it’s behind me.

There WILL be a celebration. I’m still figuring out the details. Is it selfish to throw yourself a I Kicked Cancer’s Ass party? Would anyone show up? I want to celebrate it being over of course, but I also want to celebrate the friends and family and even strangers who made it easier.

 

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The Magic Words

Complete Remission.

Hooray, right? When did this happen?! Oh wow!

The Boss

Here’s the thing: I posted those two magical words on Facebook over a week ago. And one of my friends commented “I can’t wait for the triumphant blog post.” So, I’ve been waiting to feel triumphant and have come to the conclusion that…it ain’t gonna happen.

See, I was apparently in complete remission as soon as my surgeon took out those little cancer chunks back in October. But no one told me. See, I’m not a doctor obviously, and this is my first–and hopefully only–cancer rodeo. But I’ve read a lot and I’m a very active patient. I pay attention and I follow up and I ask questions. So the key phrases the search engine in my brain was looking for when Dr. Superman called me with pathology results were: “No evidence of disease” or “remission.” I knew enough to understand that “cured” was off the table. That’s not a word you use with cancer.

So, I didn’t hear those words and I freaked out. I had a meeting with Buffy the Cancer Slayer and still, those words were missing. And in all subseqent meetings with every person on this superfun cancer “team.”

Did I ask “Am I in remission?” No, I guess I didn’t. I’m fairly certain I’ve asked “Is there any more cancer in me?” and have been told that we have no reason to think so. No evidence. No evidence of disease, right? Only no one strung those three words together.

So, the last time I was in for my Herceptin infusion I saw Dr. Captain America and I asked him this question:

“So…do I HAVE cancer or did I used to have cancer? Am I an ex-cancer person?”

He replies. “Ex. You’re in complete remission.”

Well, halle-fuckin-lujah! But could no one have SAID that like maybe two months ago?!

Words are important. And I’m thrilled to hear those magical words and to repeat them to all the friends and supporters who care about what happens to me. And I’ve tried really hard over the last week and half or so to shed the frustration and focus on the outcome. I don’t have cancer anymore! Hooray!!!!!

But, gosh, the last couple months of my life would have been different if Dr Supe had just said “remission” when he called me that day. I was ready to hear it. I was ready to celebrate. And I kinda feel like I got ripped off.

 

Bad news, confusion, and a giant WTF


I had nearly given up on getting my pathology report yesterday. I’d started second-guessing my memory about what Dr. Superman had told me. (“He said Monday or Tuesday…maybe he meant NEXT week…”) I’d called my surgeon’s office in the morning to make my post-op follow-up appointment that morning and asked the receptionist about my report. She said it wasn’t in yet and she’d call them and find out what was going on. Then I heard nothing all day. So, I was pleasantly surprised when Supe called me around 5:30. He took a minute to apologize for the delay. He said something about how it was taking longer to process or whatever blah blah blah. Get to the good part, I thought. Go ahead and tell me “Congratulations, you are cancer-free.” bad-news-bears1

Only that’s not what he said. One of the lymph nodes he removed had cancer in it. Still. After SIX ROUNDS of shitty, miserable, fucktatious fuckwad chemo. The other node had fibrous shit in it which he says indicates it probably did have cancer, but the chemo got it.

Then the other thing he said was that in the junk he took out of my boob there was DCIS which is Ductal Carcinoma In Situ, also known as Stage 0 cancer. This stuff I guess can’t kill you unless it escapes your duct and becomes invasive (Turdy was Invasive Ductal Carcinoma). From what I understand it’s a sleeper cell. There is debate in the medical world over whether it is being overtreated currently. Right now protocol usually is to cut it out and maybe radiate it. Chemo doesn’t really work because it targets fast-growing cells. Sooooo this is another cancer that had never shown up before. Not on mammogram, not on ultrasound, nor MRI nor PET scan. It’s an October surprise.

So what now? What do I do now. Here’s were Dr. Superman gets infuriating. (Insert a bunch of words about how he’s nice and a skilled surgeon and I respect him, etc etc). Supe thinks in terms of stats. Overall stats. So when I was wondering whether to have a mastectomy or a lumpectomy, he didn’t offer an opinion, just told me that after ten years there was no difference in survival rates. So it didn’t matter which I chose. And he told me the same thing yesterday. That the chance of recurrence of the cancer statistically, over the long term will be the same whether I just go ahead with the radiation I was going to have anyway or if I have more surgery. The difference will be how I feel about it.

“Well, if I just have the radiation as planned, how will we know it worked?”

“You’ll know in ten years when the cancer hasn’t come back.”

Okaaaaayyyyy. That…doesn’t really work for me.

So here’s what I know from this conversation:

  1. The chemo didn’t work completely.
  2. I am not “cancer-free”
  3. I can’t participate in the radiation research study I signed up for.

Here’s what I don’t know:

  1. What the fuck?!
  2. If there’s any more cancery shit in the lymph nodes that are still in my body.
  3. How much boob Supe took out.
  4. If there was anything left of Turdy in my boob.
  5. If the DCIS was in the scoop he took out, is there any more in my boob that they didn’t find before?
  6. What “more surgery” means. Bigger scoop? Mastectomy?
  7. Why no one will give me a fucking straight answer.

Reading back about HER2 + cancer I noticed something that I hadn’t seen the first time.

“According to The New England Journal of Medicine (NEJM), up to 70 percent of patients with HER2-positive breast cancer respond to treatment. However, total remission for the condition occurs in around 7 to 8 percent of patients.”

Maybe I don’t understand it correctly, but it appears that only 7 or 8 percent of HER2+ breast cancer goes into remission. Well, that can’t be true, can it? I mean, was there only ever a small chance that I would, at some point, be cancer-free? Do I not properly understand the term “remission?”

Why did I think I’d get to hear those “cancer free” words? Why was I so convinced I’d be popping champagne corks instead of shaking my head and wondering what the fuck has gone so wrong?

Dr Supe told me he’s on call this weekend and if I have questions to call his service and tell them it’s an emergency. Which is very kind. But I…don’t know that I can ever get a straight-up honest answer out of him. Unless it’s something that I can’t use. When he says it’s statistically identical for me to have more surgery or just the radiation…what does that mean for me as an individual? That I’m fucked either way? Or I’m okay either way? And just what ARE the statistics? He didn’t mention any numbers…and I could spend all day and all of next week looking for that stat and I won’t be able to find it.

I don’t know where I stand. I have an appointment with Buffy the Cancer Slayer on Monday morning and hopefully she will be straight with me. Also, I need to get my hands on that pathology report and see for myself just what is what.

I’m not a child. I’m not fragile or addle-brained. I don’t need to be protected. I’m not asking for nuclear launch codes; I just want to know the truth about what the fuck is in my body, how dangerous it is, and how to make myself as safe as possible.

Is that asking so much?

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