Why did you decide to be a SHARE Breast Cancer Helpline volunteer?
I have been part of a few Facebook closed groups for quite a few years now. At a time when there was a widespread set of losses, I blocked them all from showing up in my newsfeed. I thought I could not take the drama and sadness any longer. A year or so later I joined back in but have kept my involvement pretty low-key. With the exception of a group I administer and one other, I go to them, they don’t come to me. One day I was reading the posts and came across one from a woman who wrote a short but eloquent post about a volunteer opportunity that she was doing and what it meant to her. I read it and then moved on. A few days later, that post kept popping back in my head. I needed to find it and get in touch with her. We talked, then I called SHARE and shortly after, I was trained to answer calls on the SHARE Breast Cancer Helpline.
What do you like most about being a Helpline volunteer?
I feel an instant connection to the women that called in. I can be quite an introvert at times and I usually do better one-on-one than in a crowded room. I thought I would be nervous and not know what to say or do, but that is farthest from the truth. It comes naturally. A woman needs help--needs someone to listen to her, and/or needs to cry or vent or ask uncomfortable questions. I do my best in these circumstances. I certainly don’t have all the answers, but I share about my situation if appropriate or I follow up. I attempt to be real, transparent — to bring my experience and hope to others. Most days this works. The feeling of doing something important for another human being, one person at a time, is pure and immense. I volunteer for three TalkMets shifts a week. If you haven’t tried a shift yet, I encourage you to do it. There is a great satisfaction!
When were you diagnosed and what was your diagnosis?
I was diagnosed with early stage breast cancer in 2009, at age 51. Triple positive and lobular — a fairly rare combo. I was blindsided, numbed by the whole thing and as a result, I did as I was told. That was 6 months of neoadjuvant chemo (TCH), followed by a bilateral mastectomy, 30 rounds of radiation to my chest wall, finishing up with an AI, presumably for 5 years. I did not tolerate the AI so I stopped taking it and was eventually put on tamoxifen. I confess that I was not the most drug-compliant patient.
In 2013 my doctor ordered a CT scan to check on a suspicious spot he had seen in my lung 6 months earlier. That spot was gone but there were two lesions on my spine. I was officially diagnosed with metastatic breast cancer. Still triple positive, still lobular.
Where are you now, as far as your breast cancer “journey?”
I am 6 years and 9 months into my life with MBC. I’m on my third drug regiment, which has not followed the standard recommendation. I’ve had progression to my ovaries, Fallopian tubes, a few more spots in my spine, my rib, ilium and my peritoneum. After the discovery of Mets to the tissue surrounding my bladder, I had surgery to remove a suspicious lesion in my presacral soft tissue. It turned out to be a benign tumor despite an incredibly painful surgery; yay! We changed my drug just before the surgery to Kadcyla (tdm1). It has been my miracle drug. I just had my 41st full dose round last Thursday and my PET scan stopped showing any signs of cancer about 2 months ago. Yay again!
In addition to volunteering for SHARE, what else do you do? What do you (or did you) do for work?
I am on a combination of disability and retirement. My pre-disability job was very stressful, involved long days and many nights and weekends. After some very tough soul searching, I decided I could not do that job. Best decision ever!
What do you do for fun?
When I quit working shortly after my MBC diagnosis, I had no idea of what I would do with my time. I was a crazy workaholic for years — my life was my work. About a year later, I decided to move across the country to Hilton Head Island, SC. My parents and one of my sisters lived in the area, and I was ready to be closer to some family. Hilton Head is a small town--only about 34,000 live here all year round, although we get about 2 million visitors annually. I bought a house with a small yard and settled into my new life in the South. Trust me it is different!
My yard was an overgrown ‘jungle’. The first year I had the jungle removed and re-landscaped the entire thing with basic shrubs, trees and some flowers here and there. My sister and brother-in-law were avid gardeners, as were my parents — a gene I definitely did not inherit. Bugs, snakes, dirt, ugh! Better for someone else to do the work. It wasn’t for me. But low and behold, a little gardening itch appeared one day and I scratched it. I haven’t looked back. I am a gardening addict now. My front yard is quite organized, but I’d describe my backyard as a combination of Southern, coastal, slightly tropical, plant every inch of your soil, cottage-y like thing. And it thrills me to lose myself in its solace. I read this blurb a few weeks ago from the Fine Gardening Facebook page and felt like it describes me perfectly:
“. . . as it is with many people out there, gardening has been a therapy for me. It has helped me cope and even work through aspects of PTSD [insert mine: MBC], which makes me thankful every day that my plants and I have found each other. When I first started out, it was because I just wanted to see something beautiful when I looked out the window, but now I feel that same beauty within myself. It’s amazing what a beautiful plant and a plot of dirt can do for the mind, body (ouch), and soul."
I also love to paddle board. I’ve been hesitant this year as a result of some pretty bad hip issues, unrelated to my cancer. However, my board is staring at me every time I walk in the garage, and I have high hopes that if I’m not back on it this year that I definitely will be next year.
And last but not least, I have 2 adorable dogs, and a cute little cat that offer never ending love and delight!
What did you learn about yourself while going through your breast cancer experience?
I learned, in no particular order: that life is short and precious, who my friends are, how to remove toxic people and things from my life, where my strength comes from — deep, deep inside, that kindness always counts, how to develop a love of solitude, who to trust and who not to, to remember always that I am my best advocate, that strength is not measured by the amount of muscle you have, and I am not who I used to be.
What priorities did you have before and after?
Before: work, work, work
After: live, live, live
Any other insights that you want to share?
My latest favorite quote:
“She looked at her old life one more time took a deep breath and whispered I will never see you again” - unknown