STAGE AT DIAGNOSIS: 2B
ER DIAGNOSIS: Negative
PR DIAGNOSIS: Negative
HER2 DIAGNOSIS: Negative
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.”
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?
Get To Know Marisa…
What has been the most challenging part of your journey?
The most difficult part of having cancer for me has been the fear of recurrence and dying young.
When I was diagnosed at 28, I really didn’t know if I’d make it to 30. When I got married, I tried not to think about whether or not I would get to have children with my husband; I knew I might die before we could. I never knew if each holiday or birthday would be my last. All of that weighed heavily on me and gave me a lot of anxiety and distress, especially in the earlier years. I saw friends in the community die from the disease, and that broke my heart and fed my own fears. Any physical symptom or sensation that came up made me panic that the cancer might be back and that I could be dying. Any appointment or scan made me feel like I was waiting to find out if I had a death sentence.
With time, the fear has decreased, and things have gotten a little easier. I’ve found some healthy coping mechanisms – talking to a counselor who had cancer herself when she was young; joining support groups and becoming involved with organizations focused on breast cancer and cancer; meditating; writing; hiking, and just generally going after my dreams and bucket list items with zest and urgency.
What is your superpower?
I think my superpower is the ability to “redirect,” or make lemonade out of life’s lemons, to use the common metaphorical language. Life definitely knocks me down sometimes. But, in my low moments, I try to ask myself the question, “how would I like to get through this?” – and then strive to move towards that vision. I’ve used that question as sort of a lighthouse as I move through life.
With cancer specifically, I’ve asked myself how I’d like the experience of it to impact my life. I want to take what was a really difficult, painful, and terrifying experience in my life and use it to help others and make a difference.
I do this by sharing my story, to hopefully make others feel less alone in the experience and give them hope, as well as by raising money for breast cancer research so that fewer people die from this disease in the future. To this end, I started a blog called allthesurvivorchicks.com (though I don’t write on it as much these days, with a 2.5-year-old and an 8-month-old!). I also started a local nonprofit called the New England Breast Cancer Alliance to connect and support local survivors and raise money for research. This is also why I support the Dr. Susan Love Foundation – its focus on research, which has the potential to save so many lives, is so important to me.
What is your theme song?
As far as lyrics go, I relate a lot to “The Climb” by Miley Cyrus:
“The struggles I’m facing, the chances I’m taking
Sometimes might knock me down, but I’m not breaking
I may not know it, but these are the moments
That I’m gonna remember most, just gotta keep going
And I, I gotta be strong, just keep pushing on”
What is your favorite movie?
My favorite movie is “Wild,” based on Cheryl Strayed’s memoir about hiking 1,100 miles of the Pacific Crest Trail. I actually saw the movie in the theater about 4 months after I finished treatment, and something about it really impacted me – perhaps just the struggle to deal with trauma and mortality, especially at a young age. When I got to the car in the movie theater parking lot, I started to cry and told my husband that I needed to change my life. It was around this time that the idea to hike part of the Appalachian Trail entered my mind and became an ambition (as did many other things – like leaving my job and starting my own business, traveling the world, etc.).
Two and a half years later, I would do my first section hike of the Appalachian Trail, about 230 miles down in Tennessee and North Carolina. I’ve hiked about a quarter of the trail to date, a little over 500 miles. I’ve met a lot of people out there. Though some are college kids looking for a challenge and the like, there are a fair amount of people who seem to find themselves out there after some sort of life trauma or crisis – cancer, divorce, a suicide attempt, drug addiction, good old-fashioned mid-life crises, etc. Though I’ve thought about it a lot and have a number of hypotheses, I’m not 100% sure why people find themselves trekking through the woods in the wake of such things – but, they do. Myself included. So, thank you, “Wild” for the resonant message and inspiration – to hike, and to change my life.
What your spirit animal?
I’ll go with a mountain goat because they have special hooves that help them navigate crazy, steep mountainsides that it doesn’t look like they’d be able to. I like to think I’ve navigated some crazy terrain in my life and am tougher than I seem! Also, I love the mountains and hiking.
What is your favorite food?
How can one choose?! If pressed, I’ll go with a classic – pizza. (As an aside, pizza, Italian bread, and fruit salad were my comfort food go-to’s during chemo!).
If you could travel anywhere in the world, where would it be?
There are so many new places I’d like to go – the Caribbean, the Amalfi Coast, and a bunch of national parks in the United States, like Zion, Arches, Grand Canyon, and Yosemite.
BUT, my heart, or at least part of it, is in Hawaii. My sister lived there for 4 years, and I spent about 7 months there after I had cancer. On top of offering endless views, beaches, mountains, waterfalls, hikes, food, and social activities, it was another place of healing for me. I have so many wonderful memories there. One was of a time I went on a “pillbox” hike after I had breast cancer, and I was shocked to find the pillbox painted pink, with a breast cancer ribbon and a bunch of messages related to cancer on it. What a moment! I felt like the universe was speaking to me. It was a hike I would repeat a number of times. My sister recently moved back to Hawaii, so I am hoping we will be able to visit again.
What is your favorite quote?
There are many, but one of them is “Life is a shipwreck, but we must not forget to sing in the lifeboats,” from Voltaire. I have “Sing in the lifeboats” tattooed on my right side, in a curved line that approaches the mastectomy scar on that breast. It is a tattoo I got after I finished treatment. I got it because no matter what was happening or coming my way, if it was recurrence or dying young, I wanted to live my life as joyfully and fully as I could while I was here.
What I want all breast cancer patients to know…
I’d want all breast cancer patients to know that it is possible to survive the disease and that so much life can lie beyond a cancer diagnosis.
Even though I knew from the numbers that many women, and specifically young women, do survive breast cancer because of today’s medical treatments, it didn’t always feel possible to me, especially because I didn’t really know many young breast cancer survivors in person. It was also so hard to see beyond treatment and those early years at the time. I am almost 9 years out from diagnosis now. Since I had cancer, I have traveled the world, done sprint triathlons and half marathons, hiked a quarter of the Appalachian Trail, started my own business, started a nonprofit, got married, and had 2 children. No one can make us any promises when it comes to cancer and survival; but I hope that my story might bring people going through it some comfort and hope for their own futures.
— Marisa Paraschak