10/24/2018

TNBC- Or How I Spent My Year Not Writing...




A year ago today I lost a body part to become cancer free. A year ago today also, my new daughter-in-law learned she had leukemia. Seven months before that, my other daughter-in-law had a massive heart attack and very nearly died. It's been a hell of an 18 month journey, but today all three of us are alive and, as far as we know, healthy. But health comes at a cost.

I can't, and wouldn't, speak for my daughters-in-law experiences. Those stories are theirs to tell. But I will say this- they are two of the bravest, most compassionate and fierce women I know. Our bonds have grown stronger, tempered by our regrettable sisterhood. It is one of the "gifts" I've received from Triple Negative Breast Cancer. 

I have been loved, comforted and supported by my family and friends, in ways I find almost incomprehensible. If I ever doubted, in my darkest moments, that I was loved- that fear has been erased. For that, I am profoundly grateful.

But as for all the other crap that comes along with having cancer- well, it can just kiss my ass!

I remember my first trip to the breast cancer treatment center- the explosion of pink, the gift bag, the promise of free makeovers and massages, the smiling faces of the volunteers and staff. If I'd been dropped into the middle of the place, not knowing what it was, I would've mistaken it for a sweepstakes giveaway. Lucky you, they seemed to be saying, you have breast cancer!

But the patients sitting in the waiting room knew- the ones who were there for treatment. The pink balloons, the adult coloring station, it didn't fool them. Was that why, I wondered, they escorted me and my entourage of family, into a smaller waiting room, separated from the rest by a glass brick wall?

A squad of doctors, nurses, social workers, even a chaplain, all arrived to tell me I had a simple, small tumor- a minor almost-not-even-cancer, DCIS. A group of cells completely contained in a milk duct had formed a bond and needed to be removed. A lumpectomy would take care of it. I might only need radiation afterward and not chemotherapy. They chuckled when I asked about Triple Negative Breast Cancer- because, I knew. They didn't.  But somehow, in some strange prescience, I just knew.

They smiled at me, like I was a small child or an idiot, looked over my shoulder and spoke to my son and his wife. "You're mother's going to die- but not for a long while and not from breast cancer," the radiologist assured them.

Three lumpectomies later, when they still didn't have a clear margin, they accidentally discovered the other 1.8 cm tumor that was indeed Triple Negative Breast Cancer.

That's when I switched to Duke where I learned I would need a mastectomy and chemotherapy. There are no pink balloons at Duke.

I was lucky in that my lymph nodes weren't involved and chemo was not as bad as the horror stories I'd heard. My hair fell out exactly on schedule- two weeks after my first treatment. In fact, I was standing in the senior center, talking to a patient and twirling the end of a strand of hair when it just came out in my hand.

"Don't worry, honey," my patient said, eyes wide and clearly horrified. "Nobody saw and I won't tell a soul!"

I laughed because, well, what else can you do? "You get bitter or you get better." I heard that phrase when a convict was interviewed about his experience in prison but I think it applies to cancer just as well.

I went through the surgeries and chemotherapy in an almost numb haze. What else could I do? I needed to work. My daughter in law had leukemia; she was in way worse shape than I was. Besides, I'm the Mom. Moms don't lose their shit in ways they can't wipe away with a smile and a sniff.

Still there were times, and there are times, when it hits me. My grief is the dark, dank cellar of an old house. The place you don't want to go see as a child because that is where the monsters live. And I have monsters.

Cancer treatment ages you- and I think it's permanent.  I have arthritis now. My stamina has returned, but it seems to have reached a baseline well below my former norm. The same thing is true of my cognition- although it's steadily gaining ground. I am not the person I used to be.

I'm lopsided because I didn't want to do reconstruction, at least not until we knew whether I was going to be around for awhile. "And why bother?" I asked the surgeon. "I'll only look like a badly sewn football's been stuck on my chest." I'd seen the photos online. I'd read what others had to say about it. It's not me. Not yet.

So, I entered the land of prosthesis. A group of old ladies made me on of my originals, a "Knitted Knocker." I unwrapped the box and found two yellow and pale blue knitted, triangular shapes. Two minutes later, as I returned from tossing the box in the recyclable bin, I found my dog had already destroyed one of his new "toys." Then my first day back at work after surgery, the other one fell out on the floor of the restroom and was retrieved by one of my coworkers. "Um, is this yours?"

I've evolved onto other, more fitting blobs and bras but continue to struggle with their tendency to move on their own, creeping upward or sideways. It's not a boob, I tell myself, but it's not cancer either!

My hair is growing back but with "chemo curls" that give me an aging, Little Orphan Annie look. My hairdresser thinks they'll become the spiral curls I used to long for but I have my doubts.

And I am scared. Every day. Every time I have a twinge or get short of breath, I wonder, is it back? And what, if anything, can they do if it is? There isn't much for TNBC- but they assure me new drugs are popping up everywhere. "In five years, we'll have something," my oncologist assured me. And my neurotic self worries, do I have that much time? And my very most neurotic self worries that worrying about cancer will cause me to have more cancer because all the doctors tell me- you must avoid stress!

I don't eat red meat-mostly. I cut out alcohol-almost completely. I worry about the lowfat organic, grassfed yogurt I eat for lunch. I read that I shouldn't eat asparagus or eggs, and the list of do-nots goes on forever. But when I went through chemo and even sometimes now, I just eat plain old comfort food because it is  exactly that- a comfort.

I read everything I can get my hands on, but make sure it's a well-researched journal article or otherwise well-respected source. Then I bookmark the article and promptly forget 99% of what I've just read.

Still, there is the other side of me- the side that is profoundly grateful to be alive, the side that loves and savors more every kindness given, every moment spent with the ones I love, every new day and second of it. Part of me sees the humor in virtually all aspects of this journey. I'm not why-me-ing this because, I mean, why not me? 

It's just that on some moments of some days, the smiling face slips a bit and I taste grief in the back of my throat, rushing in like the tide.





2 comments:

LBDDiaries said...

My mom lost a breast to cancer back in the 70’s when there were fewer solutions than nowadays and she did die - 52 years later. Not to cancer but to age. She said one thing that kept her going was living wholely and completely, and staying positive, Especially after the five-year mark. That’s what they said, “IF you make it to five years without a recurrence then your prognosis is good.” She had her faith that helped her stay focused (and she was not a naturally positive person); after cancer she grabbed life with both hands and lived... for those 52 more years. She refused to let cancer be a death sentence. I am so glad you are still here!! Oh, and I learned you can use wig glue to help keep your fake boob in place.

Steve M said...

I was wondering if you would write about your struggle. I have been checking your blog regularly. Thank you for sharing. I’ll be responding d personally via text.

Still love you!
SM"