For Me.

 

“A 12-year-old boy”. That’s what I told BOTH of my surgeons. “I need you to remove both of my breasts, and I want you to leave me with a chest free of cancer and looking like a 12-year-old boy.”

I had survived six months of grueling chemotherapy. I lost every bit of hair on my body. I spent most of that time – if not with my oncologist – nauseous from the chemicals, bloated by the steroids onboard to fight against the bone pain and nausea, and fatigued beyond comprehension. Six months of fear, hope and determination. The next step for me was surgery. Surgery to remove the cancer that in my case, remained post chemo, and to check the health of my lymph nodes and to possibly remove all that were cancerous.

 

The treatment steps following a cancer diagnosis are highly dependent upon the type of breast cancer and the stage in which it is discovered. Many breast cancers caught early no longer prescribe chemotherapy, for example. I was diagnosed with stage II Triple Negative Breast Cancer (TNBC). My cancer is aggressive and one of the most difficult to treat due to the limited options of treatment. At the time of my diagnosis, just six years ago, the only treatment protocol was Chemotherapy.  Women diagnosed with TNBC today have additional therapies such as immunotherapy available to them. In 2017, I was among the first cohort of TNBC patients in the country to add an additional 6 months of chemotherapy to the treatment of TNBC – a pill – Xeloda, which in clinical trials was showing promise. Now Xeloda is joins the “standard” treatment protocols available to those with TNBC.

 

My cancer was in my left breast. It kinda goes without saying, but I’ll just say it anyway - with cancer, you get little choices, but I could decide how much of my body to remove.  Approximately 55% of women with breast cancer choose lumpectomy (just the removal of the cancerous area with healthy margins). For me the right decision was removal of the entire left breast, and I didn’t want the right one any longer either. The survival rate of either procedure is very similar. Personally, I did not want breast tissue of any size to remain in my body. The immobilizing fear of recurrence is no joke and the thought of having to have mammograms ever again, was too scary and too stressful. I did not wish that for me. Removing both breasts is also not a sure sign the cancer won’t return. Approximately 7-11% of women have cancer recurrence within the first five years of initial diagnosis, regardless of how much of the breast is removed.

As I mentioned, I had two surgeons. Most mastectomy surgeries only require one surgeon. Usually a cancer surgeon. Most folks don’t naturally have a cancer surgeon just hanging around. I found mine because of a referral by my trusted OB/GYN. I blogged about my surgeon in a previous post.  I was immediately drawn to her confidence and comforting bedside manner. She looked me in the eye and told me she would rid me of the cancer that remained behind. I believed her. I trusted her to do just that. She also suggested I see a plastic surgeon who could coordinate schedules and skill sets to provide me with the outcome I wanted. I thought I was clear to the plastic surgeon as to that outcome.  “As a flat as a 12-year-old boy.”

 

The first thing I did after coming out anesthesia was to look under my bandages. I did not see what I expected to see. What I was sure I would see. I wouldn’t let myself cry. I couldn’t start crying. I needed to be thankful for surviving chemo, for surviving cancer, for surviving this surgery. Plus, if I started to cry, I wasn’t confident I could stop. I was heartbroken. I didn’t look at a 12-year-old boy. I looked as if I was not heard.

About 25% of double mastectomy patients choose to stay flat after the surgery, and 50% of single mastectomy patients do, as well. Nearly 75% of women surveyed who opted for no breast reconstruction after mastectomy were satisfied with the results, but almost 25% said their decision to go flat was not supported by their surgeons, according to research "Going Flat’ After Mastectomy: Patient-Reported Outcomes by Online Survey”, published in 2021, by the journal Annals of Surgical Oncology. I fall into that 25%. 

 

Don’t get me wrong.  My non-flat outcome was heads above better than some of the cases I’ve seen.  And I am grateful for this. My oncologist raves about it every time she sees me – and she’s seen a lot of them. Women can come out of mastectomies horribly disfigured because many surgeons do not have the surgical skills required to remove breasts and leave the patient with a flat enclosure, they simply cut across the chest – often times not in symmetrical lines - remove the cancer and sew ya back up.  Uneven scars, left over skin and fat under the arms - known as dog ears- can be painful, disfiguring, and motion limiting. Other surgeons – my plastic surgeon included – didn’t believe me when I told him I wanted to remain flat. He believed, like many doctors do, that surely the patient doesn’t know want she wants and will change her mind later and so he “did me a solid” by leaving behind unwanted skin and fat on my body that I did not ask for, but that he was convinced I would want later.  The “mastectomy tattoo” became a thing with women who had not previously thought of having a tattoo spread across their chest in part to hide the unsightly scars and bumpy skin post-surgery of untalented and uncaring surgeons. I specifically did not want my chest piece to cover up my scars. I chose wildflowers - because of their ability to grow beautifully under the harshest of conditions and anywhere of their choosing - to rise from my scars, not to hide them. 

 

I told myself then that if I lived to see my fifth year of survivorship, I would fix me. Five years of survivorship for those with TNBC is believed to be a “milestone” to perhaps ultimately surviving the cancer, although there’s no guarantees. I literally made a promise to myself that if I survived five years, I would right a wrong done to my body. A body that was not perfect and no longer had all its original parts but was mine and one I needed to feel comfortable in.

 

The time came last week to do just that. It took me a year past my five-year anniversary to get comfortable with my fears of messing with something that was “fine as is”. What if the surgeon stirred up tiny cancer cells that were just lying in wait to be stirred up? Is that even possible? Couldn’t I just be grateful enough to leave well enough alone? Why would I take any risks when I really didn’t need to? Yep, I’m a bit superstitious and I have spent the last six years learning to be grateful for what I had, to not look for “what ifs”. It was a much more difficult decision than I had expected. But deep down, it is what I wanted. For me.

 

My beloved oncologist and I have talked for years about the surgery. She took the time at every appointment to listen to me and to talk out over and over again all my superstitions and fears of cancer returning if I had the surgery. And while she could not promise my cancer wouldn’t return, she could say with 100% certainly that if it did return, it would not be because of the surgery. I believe her and I trust her knowledge and her skill. I was ready. She paired me up with a young, female surgeon who also heard me when I said I wanted to be flat. And she told me so several times during our appointments. She was also jazzed at the challenge of making how I wanted to be without disturbing any of my chest tattoo. 

 

Challenge accepted.

 And challenge met.

This time when I looked under my bandages, I felt heard. I am truly flat. She saved my ink. And I cried. For me.

 

#KeepRooting4Me

Five years ago....

Five years. It has been five years since my cancer diagnosis. Five years of re-imagining my life, redefining and focusing on what is important to me and my family. Because tomorrow is not guaranteed.

Sunday, July 24th is known as my “cancer-versary”. A date my wife finds odd and a bit unnerving to recognize. For me, the date signifies a definable mark. The date of my cancer surgery in 2017 that removed all signs of the disease from my body post chemotherapy. 

This year, the date also signifies five years post diagnosis and NED (no evidence of disease).  For my type of breast cancer, Triple Negative, five years out also represents a clinical milestone in the lowering of the probability of re-occurrence. So, the date symbolizes an end as well as to a beginning for me. An end to a mindless sense of comfort surrounding my good health. I will never again take for granted waking up and feeling well. And a beginning to what I define as important or significant; or perhaps better put, what I left undefined as important and significant. An end to allowing undue stress and pressure to build and an end to an air of invulnerability.

I am scared. I am scared. I live with a past cancer diagnosis and I will always be scared. I have learned to say that out loud and to lean on my family, my friends, and my physicians to hold me up.

I am also present. Present in today. In the now. And now, today, I am healthy. I am happy and I am strong. Learning mindfulness and practicing it every day has been my saving grace. I am aware of when stress is building, and I am intentional about the work required to release it.

Ok, stay with me here….If you have  ever sold a home, you are familiar with the scenario where you are told by your realtor that this needs to be fixed, that needs to be replaced, you need to give the place a fresh coat of paint, etc. Essentially, making the place better before letting it go. Why do we do that? Why are we ok with living in a home that could use a “sprucing up”? Where we know stuff should be better, but we do nothing about it until we are about to sell it, to let it go?

I have an innate desire to serve. I am wired by nature to be a caretaker. I have served my country at the highest levels of government, on Capitol Hill and within the White House. I have stepped up every single time I have been asked.  And this has not always been healthy for me. It has at times
brought imaginable stress and undue pressure. It is what I believe culminated in my cancer.

As a result, I left working full time after my diagnosis, yet I was called back to my career full time - albeit a less stressful version - less than 2 years later. My wife and I uprooted from a place we had called home for 30 years to be closer to my brother and his family because she knew that would be good for me. To start anew.  And why? Because why not? We could. We had the means. But we what we may not have is time.  

We have since purchased a second home in upstate NY to be nearer to her family because it is good for her, and me. I take a daily measure of my stress levels and I work with intentionality to reduce it. I make conscious decisions on what I do and for how long I do it. I am trying at all costs to avoid having to say that “due to my health I need to step away from this”. Instead, I step away now while I can. I take conscious control over my life and how I wish to live it out. I take in every sunrise, every sunset, every rainstorm. With awe and joy. 

And I have hope. Hope that I have a tomorrow. Hope that the tomorrow brings me peace.  

It is everything I wish for you as well.

So, happy “cancer-versary” to me. 

Keep rooting for me. #FuckCancer