I Have to Tell You Something
I've always been afraid of windowless vans. They're kidnapper vans, right? So I'm usually on the lookout for them.
Unfortunately, my windowless van came disguised. It appeared as a cheery phone call from a nurse the day after my routine mammogram, October 7, 2014.
"It's not cancer," the nurse said.
Of course, I thought. I've never been called back for suspicious tissue since I began my yearly mammograms 15 years ago at age 35 (early in life because my mother and both grandmothers had breast cancer. None of them died from it).
Mentally ending the call, I realized the nurse was still talking.
"It's called LCIS. But it's technically not considered cancer."
Her voice streamed through receiver as I Googled a second opinion…
LCIS is Lobular Carcinoma In Situ.
There is was, "Carcinoma."
BAM. The van's door slammed shut on me and I was kidnapped by cancer.
Strangely, I didn't know it yet.
My First Day at the Cancer Center — Really?!
It's true. LCIS is not cancer. It's abnormal cells that indicate you might get cancer, or you might already have it. It sets you on a fact-finding mission that starts with an ultrasound. I went for the procedure that morning even though I was still sore and exhausted from the mammogram.
Physically, mammograms are not a big deal. But since 1999 I have been debilitated by fibromyalgia. I haven't written about that here because Dog Art Today has been my healthy avatar, a blog by someone who isn't in chronic pain.
The ultrasound showed areas of "architectural distortion." This prompted a core needle biopsy, which feels like being upholstered by a staple gun. It hurt. A lot.
The doctor removed tissue and placed a titanium clip inside my breast. The clip was an anchor for a wire that would poke outside my body on the day of my lumpectomy that was now scheduled.
This all felt extreme, since I did not have cancer. I had LCIS. Mistakenly, I had latched onto the first part of the diagnosis (it's not cancer) and detached from the second part (it could be).
The Trunk Not the Leaves
The first chink in that detachment came from the nurse assisting the biopsy that day. When the doctor left the room, she confided that 20 years ago she had had cancer that resulted in a hysterectomy. I thanked her for sharing, assuming her story was one of post-cancer normality.
It wasn't.
When the doctor left the room again, she told me how hard it was. Not because of the cancer, but because of the friends who fell away from her. Looking back, she said, it was for the best. It ended up being an efficient, though painful, way to rid herself of toxic people all at once.
It was a disturbing message, but one that didn't apply to me. I certainly didn't have toxic people in my life. And I didn't have cancer.
My Oncologist's Door
But, I was being treated at the cancer center and that meant I needed a team. So I met with an energetic surgeon with a penchant for drawing pictures with Sharpies (his comparison of lobules to broccoli was quite helpful), a young, beautiful, Chinese oncologist with instincts of a Jedi, and a charming radiologist of the cashmere-clad horsey set from Napa.
I felt the worst for the radiologist. He was passionate about his graphs and flow charts, eager to share his wealth of the most current research. But it seemed to me that I was wasting his professorial office hours for a college course I intended to drop.
But as he dissertated on what a lumpectomy might reveal, it happened, I experienced a mental eclipse. Something dark sent an internal memo to my conscious brain. It read, "I am a cancer patient. And this is not going to be 'journey' or even a 'battle,' both terms that imply agency. This was a hostage situation, one I might not survive."
Tyler Foote:Dark Night
Being sick is hard work. Metaphorically speaking, I was transported to a labor camp not a cell.
My mother, a three-time cancer patient, compares it to being Shanghaied — arriving doped and alone in a foreign country. And in this new world, where you don't speak the language, you're expected to get your masters degrees in medicine, financial planning, healthcare administration, and existential philosophy.
Your will and your advance healthcare directive are due immediately.
And, most devastating, you need to plan for someone to take care of your dog. Who will understand that he likes to go out three times before 10am. That the words "indoor bark" will turn down his volume. That he loves to catch his small, orange Chunky ball in his mouth, and that he needs to have the fur between his toes checked for foxtails every time he comes in from a walk.
It was too much. But it all had to be done. By me.
The lumpectomy went well.
The pathology report did not.
Waiting for My Pathology Report
I had cancer. Two kinds, my surgeon told me as he read the report just coming in on his laptop: Ductal Carninoma in Situ (DCIS) and Invasive Lobular Carcinoma (ILC).
Silence, as he stared at the screen.
"Well, obviously I'm disappointed," I said.
Finally he looked at me and said, "You're going to have your feelings. But it's better to know."
His lack of drama was reassuring, like a plumber telling you the clog is on your property, not the city's. The old oak is going to have to come down. Sad, yes, but do-able. Let's get to work.
But things got complicated fast. I was scheduled for a lymph node removal to see if the cancer had spread. But a pre-op MRI showed suspicious tissue in my other breast.
My Jedi oncologist postponed my surgery and ordered another MRI. It showed probable cancer in my other breast. Another core needle biopsy confirmed it was cancer.
Now I was bombarded with decisions as I felt rogue cells metastasizing with each passing second. And here's the truth that Pinktober doesn't convey, breast cancer is grotesque.
Bilateral mastectomy with or without concurrent reconstruction. Implant rupture. Tissue rotation. Nipple preservation. Areola tattooing. Massive scaring. Excessive bleeding. Breast prostheses. Flap failure. And "the chance that the cosmetic result will not be as pleasing as expected."
Breast Cancer is Not Pretty
After hours of conversations with my mom (my long distance guru) and my sister (my nearby caregiver), I decided to stay with my local team in Grass Valley, a small, rural community in Northern California.
I had two surgeries for lumpectomies, lymph node removal, and a reexcision. My prognosis worsened with each new pathology update. But after my second surgery, things turned around. My cancer was stage 1. It hadn't spread to my lymph nodes, and I didn't need chemo.
(This is for other breast cancer patients. Feel free to skip. I had LCIS, DCIS, ILC, ER positive, PR positive, HER Negative, BRCA negative, and an ONCO Score of 10.)
A cancer diagnosis is not like in the movies, that scene when the doctor explains the whole situation to the character and the audience. A full diagnosis comes in pieces, from labs across the country that lose your tissue sample and take weeks to respond, from MRIs that are unreadable for no known reason and need to be re-administered, from corporations who own the rights to genetic testing that your insurance first has to approve. It takes weeks, and for me months, to get the full picture.
Unfinished Business at the Cancer Center
Surprisingly, I managed the surgeries and the six weeks of radiation pretty well. I was exhausted and in pain, but I was functioning. I posted on this blog for a while and was able to make art and mount several shows for the DANK artist collective I was in.
Sadly, the nurse who told me cancer could spread to relationships more aggressively than to cells turned out to be right. Not everyone wants to deal with your cancer. And it becomes clear in a terrifying way that you are only the protagonist in your own life. To others, you're a bit player, easily dropped.
The flip side of this free fall is that people surprise you in unexpected and beautiful ways.
But, to be clear, I'm not saying "Cancer is a gift."
This concept enrages me because it victimizes patients who are scared, hopeless, angry, and alone. I felt myself butting up against it (and colluding with it) as I told people about my diagnosis. I always had a sunny lilt in my voice. I'll be fine, I told them. It was phony, but it was an easier narrative to say out loud, and marketing companies had done an excellent job laying the base for how pretty and empowering breast cancer can be.
Former breast cancer patient (I also hate the word "survivor") Barbara Ehrenreich, author of Bright-Sided: How Positive Thinking is Undermining America gets it right in her article "Smile: You've Got Cancer," when she notes…
In the mainstream of breast cancer culture, there is very little anger, no mention of possible environmental causes, and few comments about the fact that, in all but the more advanced, metastasized cases, it is the "treatments", not the disease, that cause the immediate illness and pain. In fact, the overall tone is almost universally upbeat.
When I couldn't put on that upbeat performance, I isolated. It's why I stopped blogging. And why It's been so hard to start again.
Is this helpful?
The truth is I had the "good kind of cancer" and it is a nightmare.
It's been over two years since my treatment ended and I am still struggling. Granted, fibromyalgia exacerbated my pain and my genetics have made my depression clinical. But this is what it means to have cancer. You always have it, even when technically you don't. As they say on the breast cancer message boards when they quote The Eagles' Hotel California, "You can check out any time, but you can never leave."
Writing this is post is a sign that I'm feeling better, though I still feel removed from many of the things I used to love. I've had a crippling case of "why bother." But today I feel well enough to Photoshop a selfie for you so you'll believe that I'm on the mend…
Moira McLaughlin: Self Portrait with Cancer
I don't know if Dog Art Today will remain the same or how often I will post. And I am warning you now that I don't feel neutral about the man in the White House, so Trump voters feel free to delete me from your inbox. But I'm here. I've missed connecting with you. And the dog I saved five years ago has saved me every day since I was kidnapped.
New Perspective
I look forward to sharing more from my new perspective.
P.S. If you can't remember the last time you had a mammogram, call and schedule yours right now. My surgeon is right. It's better to know.
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