Update: I feel like I owe my regular Mug Uppers a blog post on what happened since I last wrote here, but I have other things I’d rather share right now. So the BRIEF update is that breaking my ankle in three places was about as far from my neuro oncologist’s plan for my medical leave to “rest my brain from the effects of chemo” and work on a “neuro cognitive rehab” plan as you can imagine. So, a lot has been going on since that day I fell and I’m working my way back to mobility, balance, driving, and building my “cognitive load” while also learning how to deal with anxiety, depression and PTSD. It’s a lot to work on at once.
If all goes well, I hope to be back to work in about two months. That’s about all I feel like saying for an update right now other than to assure you I am getting better. Some days really do still suck but I know my tribe of family, friends, medical trusted ones and my church all have my back. There have been a lot of changes, but one thing has remained true – I love and crave authentic voices. So, with that, a bit about today’s Guest Mug Up.
This Mug Upper is the sister of a friend of mine. Her name is Jan and she owns a Pilates Studio in Brooklyn, NY. Jan was diagnosed with breast cancer in 2012. Motivated by her own rehab process and a desire to work with other individuals with breast cancer, she recently became certified as a Breast Cancer Exercise Specialist through the Pink Ribbon Program™.
Recently I asked my tribe if anyone had connections to help me secure 40 journals and pens for an upcoming woman’s breast cancer retreat. The response was actually rather overwhelming – donations from new friends and old. In particular, Jan’s sister, my friend Dywer, sent me an Amazon link and offered to buy journals in honor of her sister and she sent me Jan’s blog so I’d understand why. I read Jan’s blog and immediately asked if she’d let me use her blog as a guest post. And here we are today…
I wrote to Jan and asked her what we’d have if we were to Mug Up together and I loved her reply. “My mug up or beverage of choice is always coffee, excessive amounts”!
So, here is today’s guest Mug Up – “It’s Cancer, Deal!” by Jan Leahy
I thought I had a cancer a million times before I actually got cancer.
I am a worst case scenario kind of girl. I like to lay my scenario on a friend (not a new friend, that would be risky), come up with the triage plan, and then treat myself to an evening of Netflix and raw cookie dough in celebration of another, not really close, call averted.
Here’s a typical meltdown:
“Gigi, I have a serious, came out of nowhere, bump on my arm. It is more like a tumor, really, with all the symptoms of cancer. It is kind of growing as I speak, all spikey and asymmetrical. My nodes feel swollen. Where do you go to confirm arm cancer? Is there an arm cancer? Am I the first? How shitty is it that I have cancer of the arm and no one has any experience dealing with it? Why live in New York if we can’t muster up an arm cancer specialist at Sloane?”
Then Gigi will remind me I tripped over my dog’s leash and fell on my arm last week.
I am relieved.
Relieved enough to celebrate with cupcakes and feel rewarded for a whole five congratulatory minutes before the self-loathing kicks in.
When I found a rash on my nipple, and it migrated a bit, I saw my dermatologist, aired out the skin cancer scenario with a few key friends and started making the cookie dough.
Instead, I was told I had breast cancer.
I had grossly under-diagnosed for the first time in my life. How does a nipple rash jump to breast cancer?
It does if it is Paget’s Disease. According to the National Cancer Institute, by the time the rash shows up, there is usually an invasive tumor inside the breast.
As it turns out the Paget’s cells making up the rash on my nipple were ductal carcinoma in situ (DCIS – not the television show). This means the cancer cells were contained in this one area.
Oncologists like to call DCIS “pre-cancer.” My oncologist compared it to a bank robbery. The robbers have got the Halloween masks and cased the joint, but they were stopped at the front door by the police.
Whatever. I ended up having a mastectomy, so I feel like the robbers got into the bank, had a dance party in the vault and shook down bystanders for loose change.
I had two options for treatment:
A lumpectomy, which would take the nipple and the areola and seven weeks of daily radiation in case there was post-surgical cancer inside the breast.
A mastectomy with likely no radiation to follow up.
Going to Manhattan 5 times a week for 7 weeks seemed like a huge pain in the ass. I had spent most of my Brooklyn life avoiding Manhattan, except for seeing my sister and getting Nespresso pods. Decision made.
Choosing a mastectomy meant reconstruction.
In fact, I do not remember NOT reconstructing ever being discussed as an option. I remember mastectomy and reconstruction being billed as a pair, taking X amount of time for surgery, X amount of time to put in a spacer, X amount of time to expand the spacer, X amount of time to replace the spacer with an implant, X amount of time to heal, X amount of time until the implant has to be replaced.
I remember thinking I could have another child before I get a less than an A cup replacement.
Paget’s Disease rarely occurs in the second breast, so I really only had to contend with reconstructing one breast. I spent an afternoon flipping through albums at my plastic surgeon’s. Getting a matching pair seemed to me an impossibility.
And so it was clear for me. Mastectomy, no reconstruction, back to life as I know it, a cancer blip on the big screen of life.
People asked me repeatedly why I chose not to reconstruct, so I needed a backstory.
I spent a lot of time contemplating: what do I care about on my body that would be hard to let go off?
I could cut my hair off, but it would grow back.
I could get rid of my wrinkles, but I like the life that earned them.
I could whiten my teeth, but I am the most caffeinated person I know, so one week of coffee later, and what was the point?
But if you took six inches off my height, I would take you outside and put you down like Old Yeller.
In other words, being shorter would make me feel like something had been taken from me. The amount of space I occupy in the world would change, and I wanted all of my space.
To prep for the actual surgery, I read a lot of books and was fixated on the words they used to describe it.
Peel. Tunnel. Harvest.
Okay, peel skin, peel an apple, peel an onion to reveal the many layers underneath. Tunneling could be adorable if you imagined your beagles tunneling under the covers at night. But harvest kept bringing up images of my surgeon as an alien, with fingers ending in scalpels, poking, lifting, flapping my skin and muscle, harvesting what he could to study and destroy the human race…
I popped a Xanax while waiting for the surgery.
I was pretty sure it wasn’t working. I was called to a consultation room where my breast surgeon was waiting. He asked me my name and my birthday, as if he hadn’t held my hand or fondled my breast every visit. I believe I said, “Are you fucking kidding me?”
He responded in a very leading-the-witness kind of way: “You are here to have a single breast mastectomy, without reconstruction, is that correct?”
I said “Yes.”
He said: “Which breast?”
I replied “Seriously?” It occurred to me when I said “Seriously?’ that I sounded exactly like my three-year old son when informed by my ex that some day, very soon, he would be responsible for wiping his own ass. Seriously?
It was a tough call between “are the nodes clean?” and “is there any coffee?” when I woke up from surgery, but I went with the nodes. And then a celebratory coffee. I then fixated on getting ahead of the pain which had been suggested more than once. I pounded a pre-emptive Vicodin like a professional junkie.
For some reason, I kept imagining a hole where my breast was instead of a flat surface. I remember the surgeon saying I wouldn’t have cleavage anymore and me thinking, “of course I will.” It is not really conceivable until you have seen it, and even then, I could not get it straight in my head.
I might have spent some time in a Vicodin haze looking for my cleavage.
Probably harvested and on the mothership by then.
I did not look at the scar for a while. I am a firm believer if you can’t see it, you were not meant to.
It helped that the scar was covered with cornrows of tape. The edges of it looked red and pissed. And big. It ran from what was my cleavage into my armpit.
I had seen the scar left on reconstructed chests before, and those were much smaller. Everyone was commenting about what a great job my surgeon had done, but I was thinking he cut himself a big fucking window to get out the tiniest breast ever.
When you reconstruct, you try to save as much skin as possible. If you are not reconstructing, the excess skin is trimmed so the ends come together “tidily.” It looked like something had ripped itself out of my chest, and the doctor spent as much time wrestling with my alien breast baby, as he did taping the gaping hole left behind.
This is the part where I am supposed to tell you that I have no regrets about not reconstructing.
I don’t. Seriously.
Especially because five years later, I got the most beautiful tattoo that I have ever seen. But that’s a story for another day.
My cancer could have gone a different route entirely, with a much worse outcome. I know, because I saw it play out less than 4 years later with my sister Donna.
I rarely think about the day I was told I had breast cancer. It is not even in my top 10 worst days.
I do think about that day in the waiting room before surgery. I wanted 3 people with me: my sister Donna, my ex, and my best friend Kelly. One of them died, one of them left, and one of them moved. Perspective is everything.
I am just glad I had them all together in that moment, whatever the reason. If I had to do it again, I would definitely have a least two of them with me.
Shit happens. I accept it with resignation some days and futile protest others.
Not reconstructing dovetailed seamlessly with all the other life lessons Donna taught me.
If you don’t want to spend months warming up your child’s milk, don’t do it the first time.
If you have no staying power and commitment issues, don’t change your hair color.
If the guy you’re dating says he doesn’t want to be in a serious relationship, believe him.
If you like having the bed to yourself, go to your kids’ rooms when they have nightmares and crate train that whiny puppy.
If you do not want cancer to define you, figure out what does, and move on. More shit is coming.
Henry Street Pilates
~Mug Up Mermaid