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

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Written by barbigelow

Wife, mother, school psychologist, cat lover

7 comments

  1. Barbara~ Thank you for your openness and sharing. I’m a newbie in the ‘survivor club’ and admire your bravery and telling like it is. Bonnie

    Liked by 1 person

  2. Writing is such an essential part of trying to make sense of what happens to us–even if we never find the answers. I’m keeping you in my prayers and I will certainly never bring you lasagna.

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  3. Mrs Bigelow- your family had an astounding impact on me during the short time I worked with Bridget. Bridget alone is such s beautiful presence, but when your family was together it was enough to make me want to pull up a chair and invite myself for dinner and drinks. You are a wonderful unity as a family and the example you are setting for your daughters is powerful. I wish you the most heartfelt love, comfort and strength as you continue on this journey. You are a strong, beautiful, genuine mother and wife. Keep fighting the fight. Xo

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  4. Barbara,
    Been some time sine we last connected. Tons of great memories (the ski trip being perhaps the best). Have always admired you and the family for how you choose to deal with this in your lives. Will keep you in my prayers and wish you all the best. Say hi to all for me. Brian

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  5. Hi Barbara,

    Reading your honest story left me with a new appreciation for your courageous journey and your incredible strength and of course, the love of your family. I wish there were some magic words to relieve you of the anxiety you are experiencing in the middle of the night. I have none… but I often pick up “The Book of Awakening” by Mark Nepo (a cancer survivor). This morning I just happened to read his words…”It is so simple and yet so brave to say that we are hurt when we are hurt, that we are sad when we are sad, that we are scared when we are scared. In very direct and daily ways, this energy of realness changes situations because the immediate expression of our truth releases light and warmth that influences the life we are a part of. This is the way our spirit shines.”

    Your spirit is shining Barbara and as always influencing others along your path. This morning it was me! Thanks for your honest sharing….always keeping it real. You are in my prayers. Blessings and love to you and your family! Joyce

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  6. I am sitting here in tears. First off I want to say that K you for keeping this record for your kids but I also want to say thank you for being courageous, strong, determined to not give up and “win a few battles and skirmishes.” My mother is a very strong woman and because of that I love strong women and youare the definition for me. Is it weird that my tears are because I’m afraid? You only know some people for so long but sometimes you meet some people that just make an impression and you anticipate seeing them again and don’t want it to be the case where you never see them again. I am sick of cancer because it’s been present in too many people in mylife. But what can you do…I am sorry that for those 13 years you felt the way you do. I can but I can’t imagine.

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