History of Me and a few questions and answers

A bit of history for the uninitiated: I have been married to the love of my life, Tim, for almost 32 years and we have two beautiful daughters. Kelsey is 25 and an ER nurse at Boston Medical after returning home recently from several years of living and working in NYC at New York Presbyterian Hospital. Bridget is almost 24 and just left her job as a teacher with autistic adolescents to become a Community Residence Counselor at McLean Hospital.

13 Years Ago: I was diagnosed with breast cancer after my two older sisters had also been diagnosed. I took a year off from life to have a lumpectomy, sentinel node biopsy, ancillary node dissection, chemotherapy with AC for 6 rounds and 7 weeks of radiation. Shortly after I finished treatment, my sister Mary died of metastasized breast cancer–6 weeks after the discovery it was back. This culminated in my having my ovaries and fallopian tubes removed and a major 16 hour surgery to remove both breasts and transplant abdominal fat to create new breasts in a procedure called bilateral mastectomy with DIEP reconstruction. A revision surgery followed this 3 months later, then another surgery to “create” nipples, followed by tattooing. Too much information? Yeah, I thought so -feel free to skip ahead ( I wish I could). I then went on an oral chemo drug for 10 years, Arimidex, which is an aromatase inhibitor or anti-estrogen since my cancer is fed by estrogen. The issue with these medications is that they have only been created in the last 15 to 20 years and they don’t know the clinical outcomes until they have the data from people like me. I stopped taking Arimidex 2 years ago and now the cancer has returned–the Arimidex likely slowed the disease progression.

I must admit that when I hit the ten year post diagnosis mark, I felt  distanced and more detached from the breast cancer community—I sort of put it behind me although the threat was always there, lurking in my head. It never completely goes away and my doctor never told me I was cured. He kept it real, always.

My brother, Shawn, asked me how I could have breast cancer if I don’t have breasts—good question. The cancer is an unforgiving master that can travel, hide and mutate as it find somewhere else in the body to take up shop—-in the same spot as before, in the tissue next to the original spot, or in my case, a distant location. Most BC goes to the liver, lungs or bone but I always like to be special so it decided to pitch its tent under my right kidney, marshal and enlarge the troops until it was ready to take the hill in the form of a tumor. They do the pathology to make sure it isn’t a new primary cancer—mine is the same breast cancer I had before and I now jump to Stage 4. In this case I am not going to win the fight against cancer–it is there for good but hopefully I will respond to treatment and win a few battles and skirmishes. As the doctor says—I will try different treatments until the cancer figures out how to outsmart it and become resistant–then on to another treatment–the hope is to stabilize and live comfortably as long as I can.

Next question: why blog? 13 years ago blogging was not yet a thing and we had to e-mail interested people and it was hard. Now I can blog and create a permanent record for my kids. I would have loved to have been able to hear my mother’s thoughts in 1983 when she successfully beat colon cancer or my dad’s voice in real time regarding the war. At this point it is easier for me to write my thoughts than it is to read a book–my concentration is shot and blogging helps me process and organize my thoughts.

As for my family–I may occasionally poke fun at them here but I will never write something that would invade their privacy or embarrass them (without their permission). People ask me how they are doing—don’t ask me, ask them, I can’t presume to speak for them and no one really wants to hear what two sisters whisper to each other when they climb into bed together to watch TV or my husband’s anguish at a 3:00 AM panic attack. Yeah, there is that—I am composed on the outside by nature and profession but on the inside I am as dazed, confused and panicked as the next person. Anxiety has lived in me for 13 years and isn’t leaving any time soon. My kids did express annoyance that I didn’t include them in my first post sign off along with Tim–they feel this is their life too.

As for my 2 remaining sisters–we do not speak. My parents died 3 years ago, 6 months apart and they decided to part from my brother and me. My brother’s wife, Diana, is his high school sweetheart and my childhood friend. She is more of a sister to me than anyone. Luckily she is also a nurse at Beth Israel Deaconess Hospital in Boston where I have all of my treatment.

Lastly, when Bridget first heard that cancer might be reappearing in our lives, her response: “Please, no more lasagna, mom, I can’t take it,” in reference to the universal food of love that so many kind and thoughtful people brought us the first time we went through this. This is what grounds me and keeps it real.

Barbara