6 Months
Six months ago today I began an epic trip. Not the trip I expected or planned. Not the ten day Disney World Christmas Extravaganza for my young family desperately in need of a vacation. I was diagnosed with triple negative breast cancer right outside of Cinderella’s Castle while Mickey Mouse sang Jingle Bells in the background.
I had numerous MRI’s and biopsies, a bone scan, two trips to the ER, four rounds of Red Devil chemo, 17 rounds of Taxol chemo administered over 13 days, a bilateral mastectomy, immediate reconstructive surgery, a night in the hospital, a lot of dilaudid (followed by several dilaudid induced Tiktoks), Ativan, and all kinds of other weird steroids and anti-nausea medication. I cold capped to save my hair, endured more than a hundred hours of sub-zero temperatures on my scalp and still lost a lot hair.
Most of this happened during a global pandemic while we worked from home, home schooled our older two kids, and tried to sleep train our infant.
Yesterday, I received the incredible news that I had a pathological complete response (PCR) to chemotherapy and that I am cancer free. I exhaled for the first time in six months.
My husband sobbed tears of joy. I looked at him, still stunned. It does not seem real. None of it. When I look in the mirror at my bald face today, and all I can think is, “holy shit, what just happened?”
I’m happy. Obviously. I’m still completely stunned.
“This must feel like the best day of your life.” “You must feel reborn.”
Do all of you who have never had cancer wake up every day and say “THIS IS THE BEST DAY OF MY LIFE. BY GOLLY, I FEEL REBORN.”
No?
It’s amazing news. But for fucks sake I still HAD CANCER. My breasts were amputated LAST WEEK. I have no eyelashes and my last baby joys were ripped from me. I’ll meet my deductible every year for the rest of my life while the rest of you are out there bragging about your damn HSA’s. I’m never going to stop being mad about all of it. Don’t ask or expect me to let go of my anger EVER or get right out of my life.
Go. Bye.
Before you use this scientific win to try to convert me religiously, remember that PCR in the TNBC community comes with an asterisk. We all know folks who have had PCR and then the unthinkable happens. That infamous three to five year benchmark looms out ahead of me.
At least I am six months in. It has been the hardest six moths of my life. I had no clue how I was going to make it. But I made it.
Perhaps someone out there someone is getting diagnosed right now and she will find this page.
Hopefully she’ll see that I was terrified and mad as hell, and know that it’s okay to be terrified and mad as hell. That her feelings are valid. That people who are telling her to “stay positive” are burdening her with toxic bullshit. Hopefully, she will see that I ended up okay and deep down in the depths of her despair she’ll find a spark of hope.
She’ll learn that she does not have to be the bald, silent, withered cancer victim-hero that everyone expects her to be. That she can keep some hair if she chooses. Exercise. Scream and break dishes if she needs to. Swear a little. Or a lot. Drink wine. Tell people what her boundaries are and that it’s not cool to compare her to the baby boomers with cancer or call fighting a life threatening disease a freaking “journey.”
She will learn the truth. That fighting cancer is not the inspirational baloney we see on tv. It’s living your regular life with a massive additional task. It’s crying in the parking lot of the hospital before or after appointments. It’s constantly pouring from an empty cup. That fighting cancer is harder mentally than it is physically.
She will learn that there is a community of young women with breast cancer who kick ass and take no bullshit. That there’s a not-so-secret society of AYA cancer patients on social media. That we have all been in the diagnosis hell-hole and we managed to crawl out alive and she will too.
And six months later, maybe more, maybe less, she’ll be on the other side. Maybe cancer free. Maybe “no evidence of disease.” Maybe remission.
And she will join me in being stunned but relieved. Happy but mournful.
Mournful of the “before cancer” version of myself that is gone forever. Mournful of the experiences cancer took from my last baby and I. Mournful of the trust I once had in doctors. Mournful of feeling carefree. Mournful of having a simple health record.
Cognizant of the fact that survivors have to stay woke. Not just about systemic racism (always important) but about our bodies. Any sign of something being “off” merits a phone call to the oncology department.
Educated about our bodies, our disease, and our health care. A person diagnosed with cancer will spend months in an information dense crash course in cancer, cancer treatment, cancer related drugs, and sadly, their insurance company.
Now I am educated, but six months ago I was ignorant to the fact that there are so many subtypes of breast cancer. I was ignorant to the fact that “early detection” does not mean one has avoided a stage four diagnosis. I did not know that despite an entire calendar month being dedicated to “breast cancer awareness,” 40,000 people, mostly women, die of breast cancer every year.
I did not know, and the breast cancer community does not like to talk about, the fact that one third of all early stage breast cancers return as metastatic. 100% of breast cancer deaths are from metastatic breast cancer (MBC), yet MBC receives just 2-5% of breast cancer funding. Those pink campaigns you’re so familiar with? They focus on early detection. Breast cancer still kills women, even women who find their own breast cancer or who have mammograms. If enough funding was diverted or raised for MBC, it could become a manageable chronic disease like diabetes. (Source: https://www.metavivor.org/take-action/why-we-need-you/ )
Six months ago I googled “triple negative breast cancer” and found that it was nicknamed “the kiss of death.” While breast cancer five year survival rates are 93% for hormone positive subtypes, the five year survival for TNBC is 77%.
The “Pinktober” campaigns always rubbed me the wrong way. I absolutely love the color pink, but “save the ta-ta’s” sexualizes cancer. CANCER. And these pink campaigns fall short. MBC and TNBC need funding.
Pink campaigns are also entirely worthless if doctors ignore young women who find a lump. Pregnant women don’t get breast cancer? Well, I can name about fifteen women that got TNBC during pregnancy. If we can get some funding into TNBC, maybe we can figure out why and warn pregnant women and their OB’s to be on the lookout. Support TNBC research here: https://tnbcfoundation.org/support-us
PCR is an exhale for me. It means that I don’t have to try to run my business through another six months or more of cancer treatment. It means I can focus more on my young family. It also comes with a twinge of guilt. I know a lot of women who are all over the place in treatment or post-treatment. I am not about to rub it in their faces, and let’s face it, I know I’m not off the hook entirely.
Six months.
I did not want cancer to change me, but it has. I was already my strongest advocate, and now my voice is louder and more firm. I already knew that I had to spend my life “busy living,” but now I will stop apologizing for it. I have learned that when bad things happen in life to stop trying to wax a positive gloss over it. To let the truth out. To say “I don’t know what to say, I’m sorry,” when there is nothing good to say.
Am I grateful for cancer? Hell no. But I am focused.
Hello, I’m Kate. 2.0.
