An Interview with Mara: An Inspiring Story
Last updated: September 2022
Mara, who lives in London, Ontario, has been described by her M.O. as, "a miracle walking around."
She was diagnosed with Inflammatory Breast Cancer, Stage IIIB, in May 2015, aged 43, and underwent a mastectomy before chemo and radiation.
She had a lymphadenectomy one month earlier, as part of her DCIS diagnosis. Just 14 months later, the cancer metastasized to her brain. Treatment for the 10 cm tumor, located behind her right ear, consisted initially of a craniotomy and whole brain radiation, with spot treatment in 2018.
Amazingly, seven years later, the cancer remains in the same spot, and Mara proudly proclaims her no evidence of disease (NED) status as no cancer "from the neck down". Treatment currently consists of three-weekly doses of Herceptin.
Signing up for the community of BreastCancer.org (BCO) pretty well from the get-go, Mara is approaching 5,000 posts. She has noted that breast cancer spreading to the brain first is becoming more common due to treatment improvements. However, having only one area affected, or oligometastatic as it is called, appears to be good for survival. Mara is an inspiring patient advocate, ready to help fellow patients, and agreed to answer some questions.
Q: You are a regular and extremely helpful poster on the Brain Mets Sisters thread on BCO. What have you learned from this thread?
The Brain Mets Sisters thread was actually the first one I followed. I was always fearful of the IBC spreading to my brain, long before anything happened. I followed along there and when I found out I did have a brain met, read up mostly on another poster who went through the Whole Brain Radiation (WBR) already. It made me feel better. I learned that although it seemed that many of the older posters are gone, treatments are getting better because many of us are doing better and for longer.
I like to answer when someone is fearful of the WBR because that is what I had and credit with helping prevent new mets from showing up elsewhere. I go through what I went through, treatment, what to expect, and maintaining exercise and eating as much as possible to recover quicker. I also like to hear about everyone else and their experiences, because it informs me of different treatment options people have as well.
Q: What are your scanning regimens?
I just have the three-month MRI to watch the brain and six-month CT scans to watch for mets from the neck down. A heart echo is done every four months now since my heart is not affected by Herceptin to this point.
Q: Do you have a support outside of BCO, such as family and friends?
I do have an older brother and sister-in-law who help me but mostly with regular stuff like grocery shopping. I do update Facebook friends on my condition after scans. Since I have been stable health wise, I do not feel the need for cancer support right now. My mind adjusted to the appointments, Herceptin and scans. I always know at the back of my mind, there is the possibility, I will progress, but overall, regular life is all I worry about.
Q: What are your biggest concerns and fears?
My biggest concern would be the decision of whether to continue treatment if my disease were to progress. As a person living alone, while I have no doubt my older brother and sister-in-law would help me, I don't know that I could handle being sick on my own most of the time due to likely side effects.
Again, this is not top of mind but I have thought about this and weighed options but don't feel I should rule out stopping treatment if I progress or continuing. I can always reconsider it if necessary.
The only other concern is financial, I live on disability but am making it work for me but I often worry about rising prices and considering a job. I'm unsure what I would do at this point.
Q: How have the unknowns of this disease shaped your life and health experiences?
The biggest loss for me was working. I did work through the mastectomy, and chemo until the radiation of the mastectomy side. When the met was growing, I gradually could not function due to brain swelling. It felt like my head was in a nutcracker, not exactly painful but a lot of pressure. I also would have absent seizures while on the phone with a customer.
Since I worked from home, my employer would call my Mom and ask her to turn off the computer. The employer was great and really helped me a lot. I sometimes think about going back to work, but am not sure at this point.
Q: How do you handle the grief involved with losing friends to this insidious disease?
The person I lost most recently was my mother, due to lung cancer. That gutted me and took a long time to recover from the absolute pain. We bought a condo together and I was dealing with my own cancer and treatment while she started going through her issues. Thankfully, her medical team got the right support and my sister-in-law was able to help with her physical needs as she weakened.
I do feel sad when people pass away that I have known on BCO. Some I felt quite close to, I never like to read what they are going through when suffering before deciding on hospice. I just try to support everyone and we like to say "in your pocket" before they go for scans or off the site. I do have to remind myself in these instances of how lucky I have been to go this far. More of us are surviving longer but it is always sad to lose anyone to MBC.
I was inspired by Carol Chaoui early on after my diagnosis, she was a woman who was dealing with metastatic thyroid cancer and metastatic breast cancer at the same time. The fact that she could do so many running marathons and raise so much money while being treated for both meant that my life was not immediately over. She took a lot of fear away for me.
In the end, I feel lucky that I have responded so well to treatment. Cancer is always at back of mind since I have the scans, doctor visits, echoes, and of course Herceptin. I did lose some things but not my overall health and physical strength. My mental cognition has not been lost due to mets. Stage IV is not an immediate death sentence and survival times are going up.
I like to let people know that instead of thinking you are dying of cancer, you are living with cancer. Framing the thought that way helps me continue on and makes it easier to face new treatment or decisions on anything.
Have you been successful in getting financial assistance to help with your medical costs?