Tell us about your breast cancer experience, including diagnosis and treatment:
I was diagnosed with invasive colloid (mucinous) carcinoma on March 4, 2014. A regular screening mammogram had found a 1.8-cm tumor in my left breast. The tumor was removed via lumpectomy on March 25 with clear margins and was ER/PR positive, HER2 negative. Four sentinel lymph nodes were biopsied and showed no involvement, making my cancer Stage Ia. My Oncotype-DX score of 22 (intermediate), combined with my age (then 55), recommended chemo. I began Adriamycin/Cytoxan infusions on May 8 for four three-week cycles and then continued with 12 weekly cycles of Taxol beginning on July 31. I finished chemo on October 16 and began intensity-modulated radiation therapy (IMRT) on October 20. Designed to protect my heart and lung, the IMRT treated 11 distinct fields. I finished radiation onDecember 5 and am now taking generic Arimidex (anastrazole).
I blog in detail about my cancer experience at Cancer Survivors Network. My mentality upon receiving my diagnosis had been a combination of lock-and-load, git ‘er done, and out-of-body experience. As soon as I received my diagnosis I updated my Facebook status and asked for fight vibes (and got them). I have also been a caregiver since 2001, so my major concerns dealt with balancing caregiving with my own care. Being a caregiver had taught me skills in research and advocacy, which helped and continue to help me as a cancer patient.
Healthy diet and exercise also helped me tremendously. I had dropped 50+ pounds and reached my goal weight about three months prior to diagnosis, so my fitness level had been very strong going in. I continued aerobic exercise at reduced intensity throughout treatment, which I believe made my side effects more manageable. Post-treatment I returned to planks and strength training, especially since osteoporosis is a potential side effect of anastrazole.
What are the most important things you learned as a patient?
The lessons I learned as a patient are really the lessons I had learned as a caregiver. Take each day as it comes. Be well-informed and make informed decisions. Communicate openly with my medical team. Don’t be afraid to ask questions and speak up. Reach out for help. Get what joy I can out of life, even through adversity. I did what I call “meditation doodles,” which helped me especially through chemo. I also learned to cut myself a lot of slack and to make my own limitations clear to my caree, which helped us negotiate our way through both our illnesses. In many respects I had to choose my battles.
Where do you find support?
In addition to #BCSM I participate at the American Cancer Society’s WhatNext.com, a social media network for cancer patients. I have a great cheering section on Facebook. I also attend a local breast cancer support group. This year I will facilitate a “Creativity Heals” support group for cancer patients at my radiation facility, the same location where my BC group meets. My medical team has been wonderful. So, too, several friends in particular.
I made two phone calls on the day I got my diagnosis. The first was to the American Cancer Society resource center (1-800-227-2345), which referred me to a detailed breast cancer guide and a guide of post-surgical exercises. The second call was to the facilitator of my BC support group, whose number I had gotten via my hospital’s website. I also got guidance from the Reach to Recovery volunteer assigned to me via the support group.
What is the most important advice you would give a new patient?
– Go easy on yourself. You have one task now, and it’s fighting cancer. Let your body do its job.
– Get help and support wherever you can. You are not alone.
– Do what you love as much as you can. Cancer strips one down, but you can still nurture who you are. Art served as passion and meditation for me.
– Communicate with your medical team — about side effects, your needs and wishes, etc. As my oncologist’s assistant told me, people are afraid they’ll be seen as complaining, but they’re not. Do your research so that you can make informed choices. Things move fast just after diagnosis, but take the time you need where it is available. On two occasions I asked doctors how long I had before they needed my decision, rather than be rushed into giving one.
– Live in the moment as best you can. In May 2014 I was just starting chemo and knew that I was in for a long slog. I got through treatment one day at a time and have come out the other end of it.
– I recommend keeping a journal. It does not need to be polished in any way. My journal includes To Do lists, problem-solving, raw emotions, thinking out loud, and more. Once my concerns are down on paper I am better able to deal with them.
– I recommend exercise (even at reduced intensity) and healthy eating; both helped me through treatment. On some chemo days I could manage only a short walk throughout the house, but that movement helped me manage my side effects better.
What concerns you most about the future?
Balancing caregiving with self-care, especially if I become incapacitated. I’ve already made various arrangements, but they’re just the tip of the iceberg
Elissa Malcohn facilitates “Creativity Heals,” a monthly support group at the Robert Boissoneault Oncology Institute in Lecanto, FL. She is a freelancer in communications and blogs at Cancer Survivors Network. Find her on YouTube discussing her involvement with the #BCSM Community, as well as on Facebook and Twitter.
#BCSM Spotlight is a monthly series, shining the spotlight on a #BCSM community member. There are so many incredible people in the group – we can all learn from and inspire one another. Want to be profiled or know someone who should be profiled? Simply Contact Us!