#LOVEKnowsBreasts

In Her Own Words…

Nine years ago this November, at the age of 28, I felt a lump in my left breast while sitting in bed one idle Sunday night.

Four days later, I found myself in a hospital room being told that I almost certainly had breast cancer.

That it was at least stage 2 (with staging scans to come). That I’d most likely be looking at about a year of treatment. That my fiancé and I should consider pushing back our wedding date because I would probably still be in treatment. That I might want to start thinking over the weekend about getting my eggs retrieved if I wanted biological children, because chemo might shut down my ovaries.

So many things.

So many things would happen over that year.

A stage 2b triple negative diagnosis was confirmed. 16 rounds of chemo, a bilateral mastectomy with sentinel lymph node removal and the start of breast reconstruction, and 28 rounds of radiation would follow.

Hormone injections, egg retrieval, 6 frozen embryos.

Appointments, blood draws, scans. Uncontrollably shaking on an exam table while a machine looked for metastases in my bones. Phone calls that were hard to answer.

Short hair, a faux hawk, a bald head. Wigs, hats, (the painful process of learning how to apply) fake eyelashes!

A delayed wedding. A “Just Kidding!” second round of save-the-dates. A dress fitting with a silicone prosthesis.

Laughter, gallows humor, a brave face.

Fear, terror, panic. That every weird bodily sensation I felt might mean that the cancer had spread. That I might die. That my fiancé, siblings, and parents might have to bear witness to that.

Tears, breakdowns, heartache. Over the thought that I might abandon the people I loved who needed me. That I might die before I ever got to have kids.

Fatigue. Running on autopilot, running on empty.

A sign in our bathroom: “If you’re going through hell, keep going.”

Hope.

And so many things have happened since that year.

Marriage. Travel. Hiking. LOTS of dirty hiking. Half marathons, sprint triathlons, a Ragnar. Starting my own business. Being at all my siblings’ weddings, and then some. Meeting friends’ babies and becoming an aunt. Halloweens, Christmases, New Year’s Eves, and birthdays. Sunsets, late nights, heart-to-hearts, and laughs. Two beautiful babies.

And 9 years of “cancerversaries.”

On these cancerversaries, I always take some time to think about everything that has happened… to sit with the knowledge that I am here, and that’s no small thing.

The overwhelming feeling is gratitude. That I was able to feel the lump in my breast based on where it was. That I got into a doctor and was referred for imaging quickly. That it had only spread to my local lymph nodes by the time we found it. That I had health insurance. That we WERE able to retrieve eggs before I started chemo. That chemo seemed to work on me. That my body got me through treatment, all things considered, very well. That though I didn’t have a lot of friends or family nearby, I had my fiancé at most of my appointments and a far-flung community cheering me on. That I’ve found a bunch of strong, supportive friends in the cancer community who “get it” without me needing to explain and who cheer me on, with everything from races to good hair days to cancer milestones.

That I am here 9 years later. I came to know a lot of women in the breast cancer community, many diagnosed around the same time as me, and we are not all here today. In fact, about 30% of women diagnosed with early stage breast cancer go on to have it distantly recur. When it does, many women die within years. With triple negative breast cancer specifically, the current average is more like a year. By dumb luck, I haven’t had to face that diagnosis, and I am still here.

Aside from the gratitude, I guess I think of how much I’ve changed.

Sometimes, thinking of the girl who always loved Halloween and parties, who studied abroad in Cape Town and loved road trips, and who loved her family and friends — I don’t think I’ve changed much.

But, I think in reality, I have. In a nutshell, I think my life looks a lot less conventional now than it did before I had cancer… than it probably would look if I hadn’t had cancer.

Though I’m much the same girl I always was, I have a less standard work situation now. For many years, I spent almost as much time away from home and traveling as I spent at home. My ideas of what my life needs to look like have loosened and changed.

Sometimes these changes have made me feel like perhaps I’ve alienated some people in my life, and perhaps some people don’t feel like they know me as well anymore. We were all on similar tracks… and now I sometimes feel like I’ve spent much of the last 9 years off-roading somewhere.

That has been hard sometimes. Also hard — the way in which cancer has changed me psychologically. I guess in a nutshell, you could call it a loss of innocence. I think it happens for most people at one time or another. I think when you have a certain level of trauma when you’re younger, you just get it earlier than most people. I don’t believe that the bad, unlikely thing, whatever it is, probably won’t happen to me, or the people I love. That’s true, but I think it’s better not to think like that. I have trouble being in any medical setting. I have some mild PTSD. It’s gotten easier since those first few years, but that stuff is all a part of me now. But, much of the change, I’m grateful for. I’m more unfiltered ME now than I used to be. And, I guess the last thing I’ll say that I’m grateful for, even though it is tinged with sadness, is a greater purpose.

Seeing so many women die, including young women, and knowing it could have very well been me, has made a big impact on me. As has seeing what women go through in treatment, which is more than I would have ever guessed before I had breast cancer. And, seeing my sisters go in for screenings and follow-ups, knowing breast cancer could hit them at some point… or my friends… or someday, my 8-month-old daughter. Knowing there’s a girl sitting in a room somewhere today being told she has breast cancer.

That is why supporting organizations like the Dr. Susan Love Foundation is so important to me, and why I started a Maine-based nonprofit, the New England Breast Cancer Alliance, a few years ago with some family members and friends, including several other young breast cancer survivors. The goals of the nonprofit are to 1) raise money to go to organizations focused on breast cancer research, with an eye towards stage 4 research specifically - so that someday, fewer women die from this disease, and 2) connect and support survivors. Every time someone is diagnosed with cancer, every time we lose someone, it lights the fire to do more. I have faith that with more research, someday cancer won’t be as deadly as it is today.

Because among those things from the year I had cancer that lives on today?

Hope.

Get To Know Marisa…

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