Are you surprised? I am.
Après cancer is a series of milestones. One year since my first chemo! One year since my last chemo! I have come to the conclusion that my cancer-free status dates from my lumpectomy, when Doctor Superman removed those bad lymph nodes and the clip to show where Turdy once lay and that surprise little in situ fucker. That surgery was October 8th.
As my cancer-free anniversary approached I noticed a red rash on the “bad” boob. It itched and it seemed to emit heat. I didn’t think much of it until a week later when it was worse.
The redness and heat were bad but I also thought I had peau d’orange.
Then I started to do survivor math: bad boob + persistent rash + one year must of course equal Inflammatory Breast Cancer. Let me tell you something about IBC: it’s a nasty fucker. It’s very rare, but it’s deadly as shit. By the time you notice a weirdness on your boob, you’re probably stage IV. Here’s where it gets really messed up: because it’s very rare, it’s almost always mistaken for something else. It’s sort of like paranoia. If you think you have it, you’re probably just paranoid.
I email my oncologist and fully admit I’m probably nuts but my boob and rash and la la la. He writes back right away (bless that man) and says while it’s unlikely to be IBF, come on in and have the nurse practitioner take a look. So, I go in and she looks and she says it’s probably some sort of dermatitis and she doesn’t think there’s anything suspicious about it. She prescribes some cream, and almost as an afterthought says: “Well, because it’s the right breast let’s give you a round of antibiotics too.” And I was supposed to be relieved. But I wasn’t. Because that’s how every single IBF story goes.
1. Weirdness on boob.
2. Doctor prescribes cream.
3. When that doesn’t work, Doctor prescribes antibiotics.
4. When that doesn’t work, Doctor orders a skin biopsy
5. Patient is diagnosed with IBF and the cancer has had six or eight extra weeks to metastasize.
I went home convinced I had IBF and just had to go through the motions of eliminating non-cancer to appease my doctor. I creamed and antibiotic’d and the rash got worse. It spread across my boob and then it got little pustules.
And then it got better.
I’ve formed a little group of Facebook friends that are breast cancer survivors. They range from a woman who had stage 0 and avoided chemo to one who has been stage IV since her triple-negative breast cancer came back after she’d almost hit 3 years in remission. I messaged them about my rash and they all told me it was super unlikely to be anything; but to have it checked out for my peace of mind.
I reported back to the group that I’d been sent home with a couple prescriptions but that I didn’t feel confident.
“Is my body telling me that something is really wrong, or am I just damaged?” I asked.
“Damaged,” they replied to a woman.
“Damaged,” they wrote.
“Even after four years every headache is a brain tumor, every ache is metastasis.”
So, I guess I’m a hypochondriac now?
Then the election happened and I was so stunned, heartbroken and demoralized that I stopped taking my fat pills, which is what I call my aromatase inhibitors. The first drug I was on, Letrozole, made my joints hurt so much it was difficult to stand up from a sitting position, and climbing the stairs to tuck my daughter into bed was a painful and laborious undertaking.
After six months of that I switched to Exemestane and my knees felt better and my hot flashes weren’t as severe or frequent. But I blew UP. Without changing my diet or activity level at all I gained 20 pounds in three months. My oncologist tells me that this hormone therapy is even more important than chemo (especially when you consider my lymph nodes were involved and I was HER2 positive and my Ki-67 was high….yikes!) and that while a year ago the protocol was to stay on it for five years, now it’s TEN.
So I cut sugar out of my diet–which was tragic because ever since chemo I’ve craved sugar like a child. Still, nothing. I’d lost 20 pounds from chemo, then gained 10 back when my appetite returned. And then 20 more pounds with the hormone therapy. So now I’m 10 pounds fatter than I was before I got cancer. I weigh more than I did nine months pregnant. This weight gain and inability to lose weight is a known side effect and there doesn’t appear to be any treatment. Even the patients who only eat organic shit and exercise every day get and can’t lose the belly. Besides feeling like a fucking monster, guess what’s a risk factor for a cancer recurrence? Yep, obesity.
And I look back at the videos of that woman with long dark hair and little skirts with a gleam in her eye having fun and I don’t even see a shadow of myself in her anymore.
And lordy, back then the whole world and their uncle Bubba just had to tell me how fat and ugly I was. Some of them said I looked like a bulldog. More than a few compared me to Shrek. Not even Fiona—Shrek. And now I see there was nothing wrong with her. She looked pretty okay for a person in her late thirties who had borne two babies.
Now I actually do look like Shrek. It’s not just the weight, it’s what chemo did to my body and my skin and my eyesight. It’s like in a matter of months I went from rather dumpy middle-aged mom to an ancient ogre with wrinkled age-spotted skin and that sick crepe-neck. My physical ailments are more similar to those of my mother’s generation than my peers. I look like an old lady and feel like one too.
Ergo, I stopped taking the damn pills. For all the vain and inglorious reasons noted above and also because I’m not all that invested in longevity if it’s gonna be in a world where Donald fucking Trump is in charge of shit.
So, going cold turkey on my fat pills may or may not have exacerbated the stress and despair I’d been experienced for two post-election weeks when, after 4 or 5 days of dizziness, shortness of breath and a tight feeling around my chest I went to the ER. Partially because I was too embarrassed by my IBF freakout to talk to my doctor. I just wanted them to whip out a stethoscope and listen to my heart and tell me I was fine. But ER’s don’t play that.
Here’s a tip. If you ever want to go to the front of the line at the ER, tell them you have chest pains. The next thing I know, I’m in a gown, in a bed, getting an EKG, blood test, urine test, a chest x-ray and two doses of a delightful treat called Dilaudid.
It’s Dilaudid Girl! She fools everyone with the strategically placed sheet. What double chin?
Everything was perfectly fine with my heart. There are white blood cells in my pee, but I don’t have a fever so who the fuck knows.But of course you must know by know I started Googling bladder cancer.
Contributing to my stress is that I’ve been searching diligently for 10 months and haven’t found a full time job. I haven’t even gotten a response for jobs I could do in my sleep. I even threw my hat in the ring for a job I basically created at a former employer…and didn’t make it past the phone screen. That felt almost exactly how I imagine a knife in the heart feels.
Hire me. Please.
I haven’t gotten to a face-to-face interview for any permanent job anywhere. For ten months. So I’ve been doing freelance stuff. But between hustling for work and begging clients to pay their invoices it’s pretty much a big fat ball of stress.
At one point I got superstitious. Like, I’ve been a pretty good person for the past several years, but before that I hurt some people. Not much in the way of real malice, but thoughtless comments, loose lips, taking a joke too far, general bitchiness. So, I went on what I called my “apology tour.” I apologized to former coworkers, online acquaintances, old boyfriends, you name it. For big stuff and for stuff so petty the victim had forgotten about it. It felt good. I felt unburdened. I was like “OKAY! NOW we’re getting somewhere!” And then suddenly a friend I hadn’t talked to in a long time hooked me up with a nice contract gig writing for a large company. I actually had an interview! All systems go! But then these things happened in this order:
- The budget for my services wasn’t approved – sad face
- They came up with a test-case to prove my worth – happy face!
- They want me for three months a 40/hrs week! – happy face!
- Four weeks pass and the contract isn’t signed. – sad face
- Company re-org! They want me to contract 3 months then change to full time permanent! – ecstatic face!
- Two weeks of silence – sad face
- There’s no budget AGAIN and they can offer me 30 hours a MONTH – what face do I have now? Disappointed face? Jerked around face? Glad to have fucking scraps of work face?
Now, don’t get me wrong, it’s not 100% misery and self-pity up in here. The chickens are laying fresh eggs. We spent a fun weekend with friends in the mountains. My father finally got his ailments properly diagnosed, and I met Bruce Springsteen!
I told him his music got me through 6 rounds of chemo. He said, “Thank you, sweetheart!”
But all in all, I sort of miss cancer right now. It was really liberating to have ONE job: survive.