My Non-Pink Journey with Breast Cancer Revisited

 

 

I wrote a similar post about my Breast Cancer journey. Most of it is a re-hash about my very personal feelings about breast cancer and the treatment, not awareness.

I’m not sure why October has been designated for so-called “Breast Cancer Awareness”, but my most memorable moments in October are the trees turning to autumn colors, my husband’s birthday, and Halloween, but not Breast Cancer.  Soon enough there is the ensuing rush of things to do and places to go, leading up to and including Thanksgiving and Christmas. 

 

It had been over twenty years years since I finished my first breast cancer treatments.  My breast cancer journey has been relatively easy when compared to what others endure or don’t survive. Some cancer patients call themselves survivors.  I don’t.  I see myself as someone who has thrived regardless of the bump in the road that was Breast Cancer.

 

It was a big friggin’ bump, but a bump that derailed life as I knew it for that time.

 

But I got back on track. I did what had to be done and moved on with my very busy and noisy life.

https://weneedmoresundaydinners.blogspot.com/2015/10/my-non-pink-twelve-year-journey-with.html

If you read the previous post you’ll see I had a really good personal connection with my surgeon and team. I like that he used the first person plural when discussing my condition, it was a bond in a weird way, that we’re in ‘this’ together. It was a like a good marriage.

 

On the occasion of almost twenty years, my appointment was with a practitioner who has navigated with me through this journey. I was her last appointment as she was retiring. She assured me that twenty years was a great time marker for disease recovery.

But the following year before my next mammogram there was another occurrence, a bump in the road. Stuff happens.

 

My original surgeon relocated to another state. I had made up my mind early on that I would opt for a mastectomy. It was not a difficult decision for me and I had family support. It is true when the someone says, “it’s not the cancer, it’s the treatment…”

 

My new surgeon ‘valiantly’ argued that I did not need a mastectomy. She advocated the ‘gold standard’ of treatment today was so much better and advanced than what it was twenty years ago. 

 

We screened for the type of cancer and the size. I held my ground for the mastectomy. Empathizing with her professional expertise, this was a time for me to advocate for myself and my body. I considered my age and other health issues and was firm in my decision. 

 

I believe I said out loud, “I am over this shit. They’ve given me nothing but trouble.”

 

I got a double mastectomy. It was uneventful. I healed relatively fast. As anyone whose been there knows, the drains are the worst. My husband became the best assistant nurse in the daily grind of stripping and measuring those drains. 

 

On any given day I have a few not so monumental decisions to make as I get dressed – but have fun with it. I have a drawer full of prosthetics. My biggest decisions include this: shall I choose big ones, little ones, soft ones, hard ones or none at all. It’s a variety pack of assorted textures and sizes. I have no problem going flat. Flatties will tell you that it is liberating.

 

Along this new journey I’ve found a lot of support for women who opt for no reconstruction. I also have enlisted to volunteer for a group called “Knitted Knockers”, https://www.knittedknockers.org  providing free handmade breast prostheses for women who have had breast cancer and undergone mastectomy or lumpectomy. They are soft, comfortable and beautiful. When placed in a regular bra they take the shape and feel of a real breast.

 

Along this journey the best medicine was something not procured by prescription or a surgical procedure. My husband’s constant presence and support is more healing than anything a doctor could prescribe. We lend strength to each other and get on with life. That’s thriving.

 

 

 

 

My Non-Pink Twelve Year Journey with Breast Cancer

I wrote a similar post two years ago about my Breast Cancer journey. Most of this is a re-hash about my very personal feelings about breast cancer and the treatment, not awareness.

I’m not sure why October has been designated for so-called “Breast Cancer Awareness”, probably for fundraising and the very publicized Susan G. Komen 3 Day walk, but my most memorable moments in October are the trees turning to autumn colors, my husband’s birthday, and Halloween, not Breast Cancer.  Soon enough there is ensuing rush of things to do and places to go, leading up to and including Thanksgiving and Christmas. The daylight hours may be short, but the ‘to do’ list of the last two months of the year are full and hectic. It is also the time of year I have to get the dreaded mammogram and follow-up with an oncologist and surgeon.

It has been eleven years since I finished breast cancer treatment.  My breast cancer journey has been relatively easy when compared to what others endure or don’t survive. Some cancer patients call themselves survivors.  I don’t.  I see myself as someone who has thrived regardless of the bump in the road that was Breast Cancer.

It was a big friggin’ bump, but a bump, not an earth shattering devastating event that derailed life as I knew it.

Wait, yes, it did derail it to a degree, but I got back on track. I did what had to be done and moved on with my very busy and noisy life.

After several lumpectomies over the course of two years, the diagnosis came from my surgeon that ‘we’ found some breast cancer. I like that he uses the first person plural when discussing my condition, it’s a bond in a weird way, that he’s in this with me. From the time of that phone call through the next surgery and other events that were mostly complications from treatment, my surgeon always discusses things with me as if we’re partners planning on the next move. It’s comfort and support that makes that hard decisions not so hard and gives me confidence that I’m doing o.k.  It’s been a good twelve plus years that is almost like a good marriage.

I’ve had a few different oncologists over the years, the last one doesn’t piss me off like some of the others. She seems to appreciate and genuinely sympathize with my concerns. Most importantly, she honors and respects the treatment decisions I make for myself. That’s not to say the previous doctors were not good physicians, they were better than ‘good’, some of the best in their field of expertise. I am blessed to have been treated by very capable and top-notch doctors and while medicine is certainly not a popularity contest, I want to like the person that is going to grope what’s left of my boobs, while I sit on an exam table, stripped to the waist with a tiny paper jacket hanging open in the front. 

When the reality set in that my doctor visits were going to become a much more regular gig than an annual check-up, I insisted on a sheet to drape around me instead of the ill-fitting paper jacket that was designed to fit nobody I know. When I asked for the sheet instead of that stupid paper jacket, the nurse looked at me, smiled and simply got me a sheet. I have never had to suffer the indignity of that stupid paper jacket again. If a sheet is not already provided at each of my appointments, I ask for one.

With the start of radiation, I felt relatively good. I thought this was going to be a breeze.  By the middle of the fourth week, I wasn’t feeling like it was such a breeze. Monday through Friday, every morning at 7:15 I checked in at the reception desk, was handed my beeper to notify me that it was my turn in the “oven” (patient humor, but the techs did not find this reference humorous). I would go to a changing booth, strip to my waist and wrap myself in a sheet, march into the radiation room, with a large heavy door, similar to that of a bank vault, appropriately labeled with tri-foil radiation logo, lie down on a table with a form created from a body mold of my shoulder to keep me in the same position. Once under the accelerator, a light would switch on, the tech lined up the blue-black dots tattooed from the center of my chest to the middle of my side under my armpit, it looked like a grid pattern. It was called ‘the field’.  The actual shot of radiation inflicts no pain or discomfort and lasts for minutes. The set-up takes more time than the actual therapy. On most mornings I was back home within the hour.

  Weekly blood work indicated my T-cells were dropping, it was the tail end of winter and everyone around me seemed be fighting a cold. The fatigue set in like a wall fell on me. My skin was burned and blistered.  I wore snug men’s undershirts to reduce the friction of anything I wore against the raw skin. Toward the end of the seven week treatment it was time for the ‘boost’, a more concentrated blast of radiation. My skin was badly burned and I was asked if I wanted to take a few days off and pick up again the following week. I declined, it was the final week and I just wanted to be ‘done’.

After I finished radiation therapy, my skin healed really well, but a few months later developed a blood infection in the treated breast that almost become sepsis. Once the infection healed the scar from the surgery had now become a crater because of the damage from the infection.

A year later, the oncologist asked me if my uneven breasts bothered me. I laughed at first. She stood back, folded her arms across her own chest and simply nodded right and left surveying my chest. “Really, does the uneveness bother you?” she said. My response was, “of course it does, but what can I do about it?” She recommended a plastic surgeon. When I mentioned that I thought I wouldn’t be a candidate for reconstruction, because of my womanly size, she responded, “ this is not a size 8 world.” I like that thinking.

My visit to the plastic surgeon was a pleasure. I felt like a million bucks with every appointment. He also doesn’t believe this is a size 8 world. While he detailed for me what the results of the surgery would be, the treated breast had substantial damage and he was limited as to how much he could improve the look of it, filling the crater was about the most I could hope for as an end result. When all was said and done, on my last appointment with him I expressed that I was pleased with the view as I looked down. He said that was 90% of his job.

Along this journey the best medicine was something not procured by prescription or a surgical procedure. Nestling under a blanket with my husband while I whined about how badly I felt, and his quiet but constant presence was more healing than anything else.  Sometimes we’d lay side by side and just hold hands in silence. And those were truly energizing moments, lending strength to each other to get on with our life.

Every year I keep my appointment to get the ‘girls’ checked out, squished, groped and visually assessed by the medical professionals I call the booby team. From the Radiology tech to the surgeon to the oncologist, it will be a long day but I’m grateful I can get all the appointments in one day, and get it over with. When it’s all said and done I have my own little celebration. This year it might be a Sunday dinner with the family. We’re overdue for a Sunday dinner.