A Little About My Journey: Heart Transplant & Cancers

Updated April 18, 3021

At 15 years old, I had bone cancer and one of the chemo drugs gave me heart failure.

Ultimately at 39 years old, I had a heart transplant.

Four months after my transplant, I discovered I had breast cancer.

Then while I was healing from my double mastectomy and just 2 days before my 41st birthday, my Mum died after losing her battle with ovarian cancer.

At age 44, I was diagnosed with lung cancer. I’m cancer free.

Then at age 45, I was diagnosed with Organ Rejection and vascolopathy. I’m going through immune (IVIg) treatments. I’m on another flipping journey. 🙄

I’ve had years of my life that were depressing and 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. 🥴

I’m 5 weeks post-Transplant and I still have staples in my chest. I love my “Zipper” scar.

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. I loathed chemo and was a terrible, rotten adolescent patient.

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 breasts longer than one should tolerate.

Then just within the first few weeks, as I recovered from my breast reconstruction, my Mum died of ovarian cancer. 🕊

At the time of this updated writing (April 2021), I’m about to embark on my latest battle: lung cancer treatment. I have a lobectomy scheduled to remove part of my lung. I’m still being worked up. I’m not sure if Chemo or Rad TX are on my future, until I’m better staged. I have to wait for pathology after my surgery to determine if I’m Stage 1a or 2. If I’m Stage 2, then I’ll have GemCarbo chemo protocol and maybe radiation. The thought of what’s ahead of me is terrifying and I’ve cried a lot of tears. 😤

As of April 2022, I’ve had one IVIg treatment for organ rejection. I will have these treatments every 8 weeks for the next year. My prognosis is good, if the doctors are talking about treatment for the next year…or at least that’s my take on it. To be honest this is hard to write about…the big word of rejection is terrifying. It feels like flu like symptoms and I have chest pain (hello, Nitroglycerin) and shortness of breathe. I’m uncomfortable at times physically and emotionally it has caused depression. I will post a blog about heart organ rejection separately.

The last 6-7 years of my life have been almost intolerable at times, filled with physical pain, aching loss and total lack of control.

I’ve also experienced great joy. I was in the delivery room when my nephew was born.

I would like to think that during this time of adversity, that Humor has been a helpful weapon in my coping 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. 🙂

Thanks for reading my blog. I read all of my comments. Drop me a line. 🥊🎗❤

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Update October, 2022

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At the end of April, 2022, Jenny as admitted to the ICU at Seaton in Austin with chest pain and was then transferred to the Cardiac ICU at UT Southwestern Medical Center in Dallas. She remained in the ICU until May 23^rd where she succumbed to complications from acute organ rejection.

Her passing has left a gaping hole in the cosmos.

She was… and still is… dearly loved.

A memorial service was held in her honor at Congregation Beth Israel in Austin on June 3^rd.

The service starts 15:00 minutes in to the YouTube link below: