This summer I went through this phase of researching long-term disability insurance options, rewriting our wills and reviewing life insurance policies. We also got a new dog, not only because we missed our old dog, but because I didn’t want to regret getting another dog for the kids in case something happened to me. I also started studying constellations – my youngest son had “studying stars” as part of a summer project, and I just kept going. So each night while walking Joe I’d look up, see how many more constellations I could identify, and try to think beyond my small little world. You see where I am going with this.

When I was first diagnosed with breast cancer in November 2015, I was indeed upset, but I wasn’t concerned with the prognosis. It was when I was restaged after surgery that I went downhill. In light of all of these preparations I took on this summer, I was absolutely convinced I was dying. Intellectually, of course, I knew this was not true; I still have so much treatment ahead of me, one drug that is new, the other changing the HER2+ diagnosis from one that was extremely poor before 1998 to one that is very treatable.  But every day in the pit of my stomach, I thought it had to be more than just a coincidence that I would start prepping in the case of my death and wondering more about the notion of heaven only a few months prior to my diagnosis. I was convinced my actions were signs of things to come, and I became more frustrated than ever that I logically could not get passed it. This despair and obsession lasted for weeks. Then, this week a social worker called from Dana-Farber. I told her this story.

“That’s called intuition,” she said. “I hear stories like that all the time.” No kidding. And then I remembered the last time I took a Myers-Briggs test, I came up as INFJ. Of course I was freaking out. But it was completely normal. There was comfort in that, and in the past few days, I haven’t really thought about it.

***

I decided the first week of January to be treated in Boston at the Dana-Farber Cancer Institute. It’s a bit far from where we live, but nothing unmanageable. And Boston is my hometown. It would be a disservice to me and my family if I didn’t go to one of the best cancer clinics and research facilities in the world that happens to be two hours away. So as of 1/7/16, I have been (and will be) in Boston every week for twelve Taxol infusions, receiving Herceptin and Perjeta every third week. Once that’s completed, I’ll receive four rounds of the Adriamycin / Cytoxan cocktail (also affectionately known as “the red devil“) over another twelve weeks. Then I’ll receive more surgery, then radiation, and more Herceptin every three weeks. 2016 will certainly be a long year, but we’ll definitely make the most of it.

The crazy part, so far, I feel fine. I get tired a few days after treatment days, but nothing absolutely unusual, and I love going to Dana-Farber. Tomorrow is my fourth round of Taxol, and just yesterday my hair started to fall out – not in big chunks, but lots of noticeable strands everywhere. Just as well, really, it was going to happen eventually.

@monicawright overrated anyway <3

— Casie Gillette (@Casieg) January 26, 2016

 

I’ve thought pretty hard about sharing ongoing details. Things on the internet live forever. And of course I realize what will come up in search results under my name (beyond the other Monica Wright, of course.) It’s hard to be public about something so personally frightening, while maintaining strength and composure. But last week while looking at the Dana-Farber site I came across Tara Shuman’s blog, she articulated so many things I was feeling, there were too many similarities to our stories. I asked her about her book and read the entire thing in one day. I wasn’t alone. I realized that there are thousands of us at any given time, and when I can give back (not IF, but WHEN), I hope somehow I’ll be able to guide others through this journey, too.

When you visit the doctor’s office for the first time officially diagnosed with breast cancer, they give you a handbook. It has tulips on the cover, filled with diagrams, charts and illustrations in different shades of pink, all while using a scripty, flourishy font usually reserved for sympathy cards or feminine hygiene products. Topics include “How To Wear A Seatbelt After Your Mastectomy” and “Exercising Your Surgical Arm.”

I told my friend Amy that the book remind me of the workbooks we used to get in CCD class with worksheets asking those thought-provoking questions at the end of each chapter to see if we understood the material, if we were indeed ready and worthy to receive the Holy Spirit.

I’m not ready. So it sits on my desk, with a blue folder on stacked on top of it.

***

The doctor called with biopsy results late on a Monday night. Our beagle Little Joe was bitten by another dog earlier that day, we had spent the evening at the emergency vet clinic to get his ear stitched up. There were dishes in the sink, homework papers everywhere, dog blood still spattered on the wall between the kitchen and the front door from when Joe shook his head. It was about 9:30 pm and I just came in from attempting to walk Joe with the Cone of Shame, which many dog owners can relate that it’s nearly impossible. I came in to kids arguing, I yelled again about brushing teeth as I cleaned the wall. My oldest son said the doctor called, but he didn’t take a message because he’s calling back. I started to fume about not taking messages.

Up until I spoke to the doctor that night I really wasn’t that concerned. I have regular mammograms, this year it was the same routine. I was just called back. And then called back again. And called again for an ultrasound. And called again for a biopsy. But the internet (I have more to say about the internet in a moment) states about 4 out of 5 biopsies are negative. I have no family history. Odds were in my favor. And plus, if it is positive, I know enough people that had a lumpectomy, maybe some radiation, and then they were good as new. Nothing I can’t handle.

I managed to write four words during that 20-minute call, of which I can’t remember a thing. Two of the words are obvious, as if my hand was just writing what he was saying without any understanding. I did manage to write “mucinous” and “easy-to-treat.” But this isn’t entirely true – “easy-to-treat” and “treatable” are two different things. What I was told wasn’t the full diagnosis, I didn’t get the complete pathology report until the next day.

I needed to sleep, I was supposed to be on a flight that next day to Las Vegas. I was supposed to speak on a panel that Thursday, and I still needed to pack. I decided to go to bed, and shockingly fell asleep for about two hours. At 1:00 am I sat at my desk and started searching. At 5:00 am I called my mother. She began to wail.

***

The statistics show that only 1-5% of breast cancers are mucinous in nature, more prevalent in older women who are post menopausal. I’m still young, no signs of menopause.

My tumor is also triple positive for estrogen, progesterone and HER2 receptors. Mucinous carcinoma is rarely positive for HER2. (An aside, triple-positive is a better diagnosis, treatable with hormone therapy in addition to other treatments.)

This type also generally doesn’t spread to lymph nodes. Next Friday I’ll have surgery to learn how invasive it has been to my body. Fingers crossed that in this last case, the odds will finally be in my favor.

***

I didn’t go to Vegas. But over the course of that week I spent sleepless nights going down rabbit holes of treatment options, alternative medicines, recurrence rates and mortality rates. Luckily, the people I have told kept me in check.

It was recommended that I don’t share this diagnosis socially right away; it’s too risky with all of the opinions, all of the stories of people who know people who went on strict diets or had special enemas or had their fillings removed and their cancer miraculously went away. I’m already on information overload. But I’m social in nature and a big part of my community is online, so eventually I was going to talk about it, the support is needed and welcome. But this is where I stand firm – I’m a fan of modern medicine and that’s not going to change. And I’m likely going to need a lot of it, including surgery, radiation, chemotherapy and hormone therapy. I’ve already gone through genetic counseling which will help inform the course of treatment over the next year. It’s going to be a long road. And my family needs support too, which is why I’m sharing the diagnosis here today. That’s where you’ll come in.

We need the humor, the ba(l)d jokes, the everyday interactions that we’ve always had. There will be days when we worry, but so far, the prognosis is very good. I’m not dying (despite what the mortality calculators say)  – but there has been mourning. My body let me down. And once treatments start I’ll likely feel like crap. I might lose my hair. There will be – and has been – sadness. And deep down I’m torn because I don’t want to be treated differently professionally, or be “that kid’s mother with cancer.”

But I have to accept that this journey will be part of me. I just can’t let it define me.