One year ago today, I was diagnosed with breast cancer.
I’d felt a lump several months earlier and had gone to my doctor for no fewer than three breast exams, only to be told that the lump felt like normal fibro-cystic tissue to her. I felt safe. I shouldn't have.
When I got the call that they had some concerns about my annual mammogram, I got a knot in my stomach that wouldn't go away. It has never gone away.
Everyone tried to be encouraging. I tried to encourage myself. It’s probably nothing, we all said.
On April 21, I went in for a series of diagnostic mammograms. The radiologist showed me an outline of several white dots in the shape of a C. They could be calcifications, he said, but they could also be cancer. Several more films were taken, and then I was led to another room for an ultrasound with a glum-faced woman who could tell me nothing.
The radiologist walked in, pushed the curtain aside and said, “It looks like you have a small, early breast cancer."
And my life changed.
~ ~ ~
As it turned out, I had stage 1C estrogen positive/progesterone positive breast cancer that was Herc2 negative. But I didn’t get to learn the nature of what I was facing until 45 days after my diagnosis, when I finally had surgery.
The wait was agonizing and was made more agonizing by idiots. The “patient coordinator,” an RN, told me she thought I was probably looking at Stage 2. (Apparently, she has a crystal ball.) I looked at survival rates and prayed that it wouldn't be worse than that. I tried to remind myself that the only person who’d seen the tumor was the radiologist, and he’d actually used the term Stage 1 during our conversation.
I opted to have a bilateral mastectomy despite the huge loss it would cause to my sexual self and my sense of femininity because I never, ever wanted to go through the whole mammogram routine again. I never wanted to wait and wonder. I never wanted to give this disease another chance at me.
The mastectomy revealed that there was a 1mm micro-metastases in a single lymph node. In the past, they didn't used to catch these. Now they do. What micro-metastases mean medically, no one knows. Now the question became chemo or no chemo.
It was an agonizing question, one that hung largely on the outcome of the OncoDX score of my tumor. This genetic test has become a guiding tool for oncologists. It is helpful in determining a patient's risk for recurrence. Patients with tumors with a score under 19 statistically speaking don't get much benefit from chemotherapy and tend to do just as well with Tamoxifen only. My OncoDX was 12.
But there was that micro-met to consider. And no one on my medical team knew what to say about that.
Ultimately, it was my decision. It sucked that there really was so little guidance. There simply hasn't been enough research on micro-mets to determine what they mean. They are significantly different from full-on macro-metastases. That much everyone knows. But what it means in terms of recurrence risk... There just isn't enough research.
I opted for chemo and radiation, feeling that I had this one chance to eradicate this illness and move forward with my life cancer free.
Chemo was tough. Losing my hair was even more painful than losing my breasts.
Radiation was less uncomfortable than chemo, at least until the end, but it was intensely dehumanizing, an experience made worse by an asshat of a radiologist who has apparently used up his lifetime allotment of medical compassion.
Treatment made it impossible to write. I watched a lot of Netflix and slept. I spent most of 2014 simply trying to get through cancer treatment.
My last day of radiation was Dec. 9. I ended up with painful blisters and needed morphine to control the pain.
My body is still healing.
~ ~ ~
So how did my life change?
It changed entirely for the worse. Unlike the occasional happy celebrity who goes on TV to talk about how cancer was a hidden blessing, I’m here to say it sucked.
I used to have breasts. Now I have enormous scars. The scars tingle and hurt sometimes — phantom nerve pain from what is truly an amputation. I've permanently lost all sexual sensitivity together with the beauty of breasts. I might be able to get some kind of breast-shaped blobs through fat transplants and such sometime later this year, but they won't be breasts. They will have little to no feeling, and what feeling they do have won't be sexual — that super sexy tug in the deep belly that sensitive nipples can give a woman.
Now I get to write about it, but I will never, ever feel it again.
I have short hair. Most people blow this off. But I'd had long hair most of my adult life and do not care for short hair at all. To lose my breasts and my hair — it made me feel like a thing, my femininity completely stripped away.
I grieve still. I grieve for the permanent loss of my breasts and that precious element of my sexuality. I grieve for the very long hair that will take years to regrow. I grieve for the more carefree version of myself, the one who hadn’t yet heard the words, “It looks like you have breast cancer.” I grieve for he version of myself that could think about the future without wondering, “Will I make it that long?"
My writing career was put on hold at a time when I suddenly needed money more than ever. Despite having good health insurance, I spent more than $10,000 out of pocket on treatment last year. So, hey, it helped me get rid of some extra cash, too. Now, I'm playing catchup with my own career.
The life I have now seems completely different than the one that I lived before April 21, 2014. I am different. I won’t ever be the same. My life will never be the same.
And yet I am deeply grateful to be alive. But more on that in a minute. I'm getting ahead of myself.
~ ~ ~
I think of 2014 as a year of shit. I would never want to relive it. I'm glad it’s over.
During treatment, I wrestled with a range of emotions from rage to fear to overwhelming sadness. Of course, the world has difficulty with honest feelings about anything, especially something as frightening to most people as cancer. A great many people reached out to support me. For that, I will always be grateful.
But there were also people who offered unsolicited advice — people who didn’t have cancer but who felt they ought to tell me how to deal with it. Some thumped bibles in my face. To them I said, no, cancer was not God’s will for me, nor was it part of any divine plan for my life. Others suggested unproven treatments and nutty cures. The most common bit of irritating advice was, “Stay positive.” YOU stay positive when you get cancer. I'll feel what I feel if that’s alright with you.
(Hint: Don't give advice to people who are enduring something you yourself haven’t had to face.)
Allow me to summarize: Fuck, no, cancer was not God’s will for my life. I find that idea extremely offensive and disgusting. It wasn't a blessing, nor is it part of any divine plan. And screw being positive.
When life gets real, people, it is all right to have real feelings.
~ ~ ~
Yes, I am deeply grateful to be alive.
I’m glad the tumor was found during that mammogram. Had I failed to get screened last year, my prognosis this year would be much worse. I have a 90 percent chance of having beat this disease, and I’m grateful for that, as well.
I’m grateful for the help my mother, sister and son Benjamin gave me in dealing with the day-to-day struggles of coping with treatment. They were champions for me.
I'm grateful for my fellow authors, readers, and friends who helped put together the Good Food Fund — thank you Thea Harrison — and those who contributed to the expense of my medical costs.
I am grateful for my medical oncologist and the other medical staff who helped save my life.
I am grateful for the hundreds of cards I received from readers from around the world and the amazing and sweet gifts that so many people sent to try to cheer me and bring me some comfort. I read every single one.
So, yes, amid the grief, I do feel gratitude as well.
~ ~ ~
I came away from the physical misery of treatment and the fear that comes with living with cancer feeling an intense desire to put last year behind me and do the best I could to live a rich and full life.
I'm less grumpy about day-to-day challenges than I was before. A normal, boring day is fine with me. I’ve gained an appreciation for the small moments in life—and an acute awareness that life will end for most of us sooner than we wish it would.
I’m starting an oil painting class next Monday — part of a promise I made to myself.
Most of all, I am writing again. It hasn't all been easy. I cried my eyes out when I came to the first sex scene and wrote about the hero licking and kissing the heroine’s nipples. That has proven to be very, very hard and may eventually mean that I quit writing romantic fiction. (Yes, I'm serious.)
I’m six months out of chemo, and I’ve written most of a novel, lost the chemo pounds, gotten fit enough to walk 3.5 miles an hour (which I haven't been doing daily despite a real need to do so), and am making a point of spending more time with my family, even when I’m in the middle of a novel.
I hope to get reconstruction sometime this year. There’s an issue of timing and then there’s the expense — an estimated $6,000 with insurance coverage. But, hey, that’s American health care for you.
I am living my life again despite the grief, and that’s the best way I can think of to say “Fuck you!" to cancer. My heart, like my body, will never be whole again. But I am living.
If that’s not the positive, inspiring message you were hoping for, then think of it as a glimpse into how terrible breast cancer really is.
We need a cure.