A Little About My Journey: Heart Transplant & Cancers

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.

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

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.

F*ck was my favorite word as a 15 yr Cancer Patient

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My beloved grandmother whom we called “G-Mum,” was pushing me in my wheelchair when we entered the elevator at the same time as Kim, one of my pediatric clinic nurses. She was dressed from head-to-toe in bright yellow scrubs, with yes…wait for it, matching yellow Keds and hair ribbon (it was 1991 after all).

My G-Mum said, “why Kim, you look like a ray of sunshine dressed in yellow.” I snickered and was proud of myself for waiting until Kim exited the elevator, to say to my gentle, kind grandmother, “G-mum she looks like a fucking banana.”

I laugh at this memory because, even though I was a sassy teenager with an impulsive mouth, it’s something I might say today too. It was the first time and if I wanted to idealize my memories, I might say it was the only time, my grandmother ever heard me swear, but I would be lying.
When I was 15 years old, my favorite word was “fuck.” I said it to provoke, cajole and irritate, especially in moments of physical pain and when I could not control a situation.

I had Askin’s Sarcoma, a form of bone cancer in the Ewing’s Sarcoma family. I was powerless over the drugs flowing into my body and likewise of the vomit spewing out. So if there was one thing I could control it was my language. For a teenager to say to their oncology team, “fuck, fuck, fuck…fuck this, fuck you…” was sometimes all I could do.

It was very disrespectful, and sure I knew this at the time, but I had no remorse. I was barely holding on. There were times I wanted to die. I would beg to be sedated, but that required a shot or to drink odious medication that, of course, I often refused. It was a no-win situation, that after hours of stalemate would end up with a physical confrontation. The only reason I did not pull my IV out of my arm was that I had a plastic port under my skin that was used for harsh chemotherapy drugs; a normal IV would be eaten up by the corrosive chemo drugs. The needle that they used to put into the port-a-cath was a curved, jagged hook. It looked like a fishing hook and terrified me. I found it painful to have my port accessed, some nurses told me it was not painful, but they had no idea.

I would later learn that I was allergic to pork based Heparin, which is what was used to flush out the port-a-cath before and after treatment. I would jump off the bed and scream in pain at the burning sensation, it felt like a dagger was being plunged into my ribs. On many occasions, nurses and technicians had to physically pin me down with force to access my port-a-cath and start my chemo treatment, which I routinely refused.

The doctor’s told me that if I did not do chemotherapy treatment that they would have to call Children’s Protective Services. My parents panicked, they were not negligent and they supported my cancer treatment, but they could not control a 15 year-old that weighed 150 lbs and was 5’6” in height. In true rebellious fashion, I told the doctor’s to “fuck off,” and if they thought a Judge could get me to submit to treatment they were wildly mistaken. Oh, it was quite the scene.

Cue my Mum crying, pleading with me to do my Chemo. Doctor’s impatiently waiting. Nurses ready to jump in and me ready for a fucking battle. I would kick, spit and thrash my body, curling into the fetal position, so that the nurse could not start the IV. I’m not proud, nor am I bragging rather this was just the reality of my situation.

On one occasion, I decide to run away from the hospital and drive home. After all I was 15 and I had my learner’s permit and been out to drive for total of a handful of hours, so Dallas highways were going to be piece of cake. I did not really think my plan entirely through, all I planned was to get to the car and to try drive away. My plan had no more elaboration that just get the hell away from the Children’s Hospital.

It was July in Texas and it was at least 99 degrees out. Hot. Too hot for a cancer patient to steal down to the parking garage, use the keypad to get into the car and get quickly discovered by my parents. I then began to irrationally scream, sob and attempt to manipulate my parent’s to give me the keys. The standoff lasted for at least 45 minutes to an hour, at this point Dr. Kamen, nurses and staff circled the car and attempted to talk me down in the parking garage. I was sweating profusely and refused to get out. The windows were electric, so they could not be lowered. There was no way that they were going to lower the windows and give me relief, which would have probably added hours to my full blown panic attack. Dr. Kamen told me that he was going to call the fire department, break windows if had to and/or wait until I passed out. I eventually opened the door and went inside, I was hot and knew that I was not going to win this battle-I had to do chemotherapy there was no other option.

I am not bragging and yet 25 years later, I still have no remorse for how I behaved as a teenager. There were other kids in treatment with me, that did not throw the temper tantrums that I did and I was aware of this and it still did not stop me. I had poor coping skills, even with therapy. Goodness, my therapist was even at my bedside doing relaxation techniques and with sedating drugs, I was still a terrible, rotten teen patient.

Years after treatment, I asked my oncologist the late Dr. Bart Kamen, “do you remember me?” He laughed, “remember you, I give a lecture on you: How to treat the difficult adolescent cancer patient.”

I would like to think that I have helped educate many doctors.