At 15 years old, I had bone cancer and one of the chemo drugs gave me heart failure. At 39 years old, I had a heart transplant. 4 months after my transplant, I discovered I had breast cancer. I had a double mastectomy, then weeks later and just 2 days before my 41st birthday, my Mum died after losing her battle with Ovarian cancer.
The last 2 years of my life have been almost intolerable.
People often compliment me on my “positive attitude,” which sometimes I am positive and other times, I want to tell them I am not fucking positive and that I am fucking faking it. Thank you and have a nice day.
Here is a more detail about my journey with a heart transplant and cancer. I’m always on a journey.
Shortly before I turned 15 years-old, I was diagnosed with bone cancer. Specifically Askin’s Sarcoma, a rare and aggressive soft tumor on my chest wall, near my right arm and shoulder. It’s genetically inherited and shares features with Ewing’s Sarcoma, which is often described as the garden variety childhood cancer, typically discovered during puberty when hormones activate cell growth, as was the case for me.
I had chemotherapy for 13 months, radiation treatment and several surgeries. One of the chemo drugs, Adriamycin (generically called, doxorubicin), gave me a heart condition. This drug is often called the “Red Devil,” because it is red in color and it causes heart conditions. Knowing I was at risk, I had routine echocardiograms and 8 years post treatment, I started showing signs of heart trouble.
This is called a “late-effect,” and I would say that most of my medical issues as an adult are late-effects from chemo and radiation. In general I would say that even with some heart problems noted in my 20’s, I was in overall fair to good health. I could never climb a mountain or run a marathon, mostly because exercise was not a part of my daily routine and in general, I just did not have the stamina.
Starting in my 30’s, my heart functioning declined and I needed a pacemaker, I also was hospitalized many times with congestive heart failure, until finally I needed a heart transplant. At 39 years old, I received a heart transplant.
Three months post-transplant, I discovered that I had breast cancer (another late effect) and that my treatment would be a bilateral mastectomy. I had to wait over 6 months for this surgery because the transplant team felt I was too vulnerable and were concerned about my survival. If you live the first year after a transplant, then your chances of living five years increase. The first year after transplant I was fragile, like being a newborn baby.
So I had to wait until I was at least one-year post heart transplant surgery for the mastectomy. I refer to this time as “ripping off the slowest band-aid,” as I cried and mourned the loss of my breast longer than one should tolerate.
Then just within the first few weeks, as I recovered from my mastectomy, my Mum died of Ovarian cancer.
The last 2 years of my life have been almost intolerable at times, filled with physical pain, aching loss and total lack of control. I would also like to think that during this time, that Humor has been a helpful weapon in my arsenal.
I can laugh during the most darkest or solemn moments. Like the time, my family all had terrible gas during midnight mass when the church softly sang Silent Night. It was not silent in my aisle, as my family farted and suppressed laughter. I have some funny memories.