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When the Diagnosis is Worse Than You Expected

I'm starting to notice that in life, things don't usually go as planned. For a Type A Planner like myself, this is really, really annoying.

When I got my original diagnosis of breast cancer, I told the radiologist that cancer wasn't part of The Plan. "My boyfriend and I are working on blending our families, you see. That takes a lot of work and thought, and I do not have time for this cancer business." He told me cancer is never part of anyone's plan, but I totally didn't believe him. Other people don't plan like we do. We had The Plan AND THIS IS NOT PART OF IT.

The silver lining to my diagnosis was that it was most likely Baby Cancer. DCIS, or Ductal Carcinoma in Situ, is Stage 0 or Stage 1. It basically means that your cancer is contained to your milk duct. If it's removed, the cancer is gone. You don't have to have chemo or radiation, because it hasn't spread at all. So in the beginning, The Plan was delayed but not totally screwed up.

If cancer is a scary movie, DCIS is basically Scooby Doo. You can get scared going into the Haunted Mansion, but at the end of the day, it all works out and you know what's going to happen: everyone's gonna be all right, Scooby will get his snacks, and everyone goes home happy and proud of themselves for surviving. There's no better breast cancer diagnosis than DCIS. They warned me that they couldn't diagnose DCIS "for sure" until they removed my breast, but it looked pretty good. "Baby Cancer," I thought.

But it turned out that I don't have DCIS. During my surgery, my breast surgeon found cancer in one of my lymph nodes, which meant that at age 34, I had invasive breast cancer. We had to wait for my pathology results to come back to find out what exactly that meant, but my initial reaction was two-fold.

First, I wasn't surprised. I felt changes in my breast leading up to my surgery, and I had a feeling the cancer was moving. Secondly, I was pissed. This is not Scooby Doo. I was promised Scooby Doo and this is not effing Scooby Doo and I really don't like scary movies, let alone horror movies, and if this turns into The freakin' Exorcist, I'm going to lose my shit.

So here's what I know, in list form, now that I've got the pathology results back and have had time to talk to a hundred doctors and my boss:

  • I've abandoned The Plan. We have no plan and are living day to day. This might be a Big Life Lesson about "living in the moment" or some crap (ugh, Big Life Lessons are always such a pain to learn).
  • I never felt a tumor, but I had one. It was 1.2 centimeters. I'd give it a name (because I name things), but I hate it and it's dead and I'm not going to give it the dignity of a name.
  • Part of my surgery involved checking my lymph nodes for cancer cells. Turns out, that stupid tumor was already traveling, and they found cancer in one of my lymph nodes. They removed it and 14 other lymph nodes.
  • I am currently cancer free (this felt good to hear, but I don't totally trust it), to the best of anyone's knowledge. My treatment going forward is about preventing recurrence.
  • My positive lymph node means that I need to have chemotherapy. Chemotherapy will last 5-6 months. I will lose my hair. I start November 1, which is the day I was planning to return to work.
  • I will not be returning to work during chemo.
  • My cancer is Stage 2a. It is ER+ PR+ HER2- in case that means something to you. To quickly summarize, hormones helped it grow. The years I spent on birth control were not helpful, and I can never use hormone-based birth control again.
  • If I hadn't caught it, it would have killed me. Hashtag blessed, hashtag grateful. Seriously.
  • I might need radiation, but they're not sure yet (I'm guessing this is a yes for no reason other than I want to drop an atomic bomb on this problem).
  • My reconstruction will take longer than I expected, which I am not happy about because I hate the temporary tissue expanders I have in my chest.
  • Once chemo/radiation/reconstruction are over, my doctors will medically induce menopause, and for fifteen years I will have to take medication meant to block hormones. I will not have any more kids. Honestly, more kids were not in The Plan, but having that decision made for me still made me sad.
There are two possible timelines for my treatment. As we know now, plans don't actually work out as planned (grrrr), so these are subject to change: Timeline 1:
  1. Chemo, November 1 - April/May 2018
  2. Second Reconstruction Surgery, June/July 2018
Timeline 2:
  1. Chemo, November 1 - April/May 2018
  2. Radiation Therapy, June/July 2018
  3. Second Reconstruction Surgery, December 2018/January 2019


So how am I feeling about all this? Both pissed and scared, as you can probably tell. But also grateful for the lessons this is teaching me and the support I'm learning to accept.

I'm not thrilled about this being the next year of my life. The surgery and recovery have not been fun for me. I am not physically comfortable and don't have clearance to do any of the activities I used to do, including drive, cook, or do dishes. The loss of independence — especially for a single mother who has been doing every single thing for the past six years — has been really hard to swallow. I've had to be vulnerable, let go of guilt, and rely on my partner, family, friends and strangers.

Oddly, I'm not too upset about losing my hair. For some reason I feel like I can “own” chemo and losing my hair and feel strong through it. I have a lot of cool scarves and a vision of what my "chemo style" will be. The double mastectomy on the other hand, is difficult to feel strong through. I’ve had to spend much of my time inactive on the couch, which is really hard for me. The recovery has been painful and emotionally scarring, and it's invisible. Security guards are holding elevator doors for me and getting irritated that I don’t run for the door. I look perfectly healthy, and it’s been hard for me to figure out how to turn recovery (which apparently means a lot of “taking it slow”) into a source of strength.

One of the bigger issues I've had to work through is constantly identifying my cancer with the cancer of my friend who passed away in January. Before her metastasis, she was diagnosed as Stage 2b, with a positive node too. After she went through the same treatment I'm doing, she thought she'd been cured . . . and learned it had metastasized. And given she's one of very few young women I actually know who had cancer, that positive node scared the shit out of me. In my mind, that node put me in her league, and she didn't make it. To put it bluntly, I don't want to be in her league (and I know she wouldn't want me in it, either). As time has gone on, I've been able to absorb that women with later stages have gone on to live full and healthy lives. But this fear still lurks behind dark corners, even if it isn't torturing me like it was before.

I think one of the biggest lessons I’m learning is that cancer is a constantly evolving experience. It is terrifying, and battling fear is something that we cancer patients & survivors have to handle on a daily or near-daily basis. There are a half-zillion “what-if’s” and absolutely none of them are helpful. As my wise friend Kate said last night, fear is the real battle. Battling against fear is what truly takes strength, and it’s a day-to-day and minute-to-minute fight sometimes.

So there you have it. My diagnosis was worse than I expected and the road ahead is longer than I expected. The Plan is dead, the tumor is dead, and now we're taking things day by day.

When I was 35, I kicked the shit out of cancer, and it never came back.

The featured image is basically where I've been spending my last five weeks - on my couch, under this gorgeous and cozy blanket from my friend Heather. Thanks Heather, it's sooooo hygge.