A journey remembered

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Four years ago today, in very early hours, a friend picked my girlfriend and I up at the hotel we were staying at and dropped us off at the entrance to Mass General Hospital (MGH).   That was the day I walked into the hospital knowing that the next time I walked out of that hospital, it would be without my breasts.

Four months earlier:  I was scheduled for a routine mammogram.  Upon returning home from a vacation in the Caribbean I received the letter that “mammogram showed an abnormal finding, please call for follow-up.    I called my sister.  She was quiet on the other end of the phone.  Trying to console me and at the same time deal with her own feelings about this, we both knew the writing was on the wall.  

One week later on April 2nd I listened to my local doctor share “There is something going on here, Donna”.  I sat emotionless as he recommended a lumpectomy and radiation.  This is the same doctor who urged me to have double prophylactic mastectomies just eight months prior when I tested positive for the BRCA2 gene mutation. Still emotionless, I listened as he recommended a lumpectomy with 8 weeks of radiation for treatment. I left his office after telling him I would get back to him. Again, my sister was quiet when I called her with the news, and my mother sat with her jaw on her chest, I think more shocked at the lack of emotional response I had to the news.

One week later I sat in an office at Dana Farber Cancer Center waiting to hear their recommendations. “Donna, I am strongly recommending a lumpectomy as soon as possible, followed two months later with double mastectomies (plastic surgeons were booking 2 months out, so if I opted for reconstruction the mastectomies would have to wait until then as the reconstruction of both breasts would start at this time.) She shared the very disturbing news that I had not just one, but two separate cancers in my right breast, one high grade (fast growing) and a 65% chance of not only each of these cancers recurring but a new one as well. BRCA gene mutation status is nothing to brush side. Very unexpectedly I agreed to her recommendations. The following week I had a lumpectomy. At home recooperating and in amazement of variety of colors on this breast, I also received a message of Yahoo Messenger that the man I had been dating for 6 months as breaking up with me. At that time it was devastating. Today I am grateful.

Complications ensued with a hematoma and a seroma. It was like scenes from a science fiction movie which I will not share. Step 1 of fighting this insidious disease was behind me, step 2 to follow. Just as the lumpectomy didn’t come without added challenges, my insurance company denied coverage for my next surgery. At this time I also learned that my oncology surgeon had not succeeded with clean margins. I am shaking my head now at the comedy of events that seem to happen when your doctors “suggest no stress”. Two weeks, to the day, after I was diagnosed, my kid brother was also diagnosed with two different cancers, Colon and Rectal. Finally, after jumping through hoops for them, and daily arguments, my surgery was approved. On this day, four years ago, I had my double mastectomies and the beginning of reconstruction, after 15 weeks without clear margins.

It’s one thing to fight cancer, it’s another to have to fight for your rights to get treatment. This was only the beginning of a 2 year journey through breast cancer and reconstruction.

I sit here today, alive, relatively healthy, and grateful that I was given the strength and what I needed to follow through with the recommended drastic treatment. I sit here today, offering my ears, hands and heart to others embarking on this same journey. I teach hundreds of women over the course of a year. I began every class with a quick synopsis an encouragement to all that they not only get their routine testing on a timely basis, but that they also be their own advocate, questioning their doctors, suggested treatment. Long gone (I hope) are the days where my grandparents were “loyal” to their doctors, not themselves or their own health. I sit here today, grateful to be alive.

And so the journey continued…

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