Breast Cancer: So Many Decisions, What Should I Do?

Dear Breast Cancer Patient,

Are you trying to decide between lumpectomy vs mastectomy? Unilateral vs bilateral? To have reconstruction or be flat chested?

It’s fucking overwhelming. I can’t tell you what to do, but I can tell you what I did.

I was diagnosed with DCIS (ductal carcinoma in situ) only three months after my Heart Transplant.

I had just turned 40 years old and I had a routine mammogram. It was shocking, considering all the testing that they did pre-transplant and they didn’t find breast cancer?! Come on!

Normal treatment for DCIS is radiation treatment only, but I had already reached my lifetime maximum rad dose, so I was recommended to have a mastectomy. But of course…

When I was a teenager I had Askin Sarcoma and the chemo and radiation caused all of these late effects, such as DCIS. Anyway…

The worst part of the breast cancer diagnosis was waiting an agonizing 7 months for my 1 year post heart transplant anniversary to have a mastectomy surgery. If you survive after 1 year of a heart transplant your lifetime survival rate is higher. I call this time in my life: ripping off the slowest band aid ever.

So I had a lumpectomy, while I waited for the mastectomy because this surgery was not as invasive.

But a mastectomy loomed. For over six months, I contemplated bilateral vs unilateral mastectomy.

I chose to have a bilateral (both breast) mastectomy. Even though cancer was detected in one breast, I wanted to be as symmetrical as possible. This was just a personal choice.

I also chose a bilateral mastectomy, so I wouldn’t have to worry about possible future breast cancer in my remaining breast. Let’s face, my odds have not been in my favor.

Finally, I decided on a bilateral mastectomy because I was encouraged to have this difficult surgery while I was 40 years old with a new heart, rather than 60 years old with a old transplanted heart. Made sense to me, but they were willing to do only one breast and the decision was all mine.

Me a week before my bilateral mastectomy.
I hosted a “Bye Bye Boobeez ‘N Beer Bash” before my mastectomy. My friend made me knitted knockers, they wearable works of art.

The mastectomy surgery went as planned. I was told “I hit the pain pump a lot,” but I didn’t care because I was comfortable.

After expanders and taking a couple months to heal, I had reconstructive surgery with gel implants (they don’t do saline implants with mastectomies). Six months later I got 3D nipple tattoos (my first ever tattoo, I’m a bad ass now).

I also got an infection nearly every step of the way. Do not let this dissuade you from having surgery.

I’m on immunosuppressive drugs to make sure I don’t reject my heart transplant, so for me healing is very slow and risk of infection is high. I was hospitalized one time for a breast related infection and had to do a few rounds of oral antibiotics. My nipple tattoos got infected and scarred, so now they look very realistic! 😁 I love my nipple tattoos.

I didn’t know I would get infections (which were all managed), so I just took it one step at a time.

I’m especially glad I got 3D nipple tattoos because I look more normal and this was very important to me, especially as I don’t look like myself due to prednisone and 50 lbs weight gain. I look in the mirror or put on a shirt and feel so much better than I did when I was flat chested after the mastectomy and before the reconstruction… its not vanity, breast are parts of my body.

No one would judge you for wanting to look not disfigured. Whatever you choose is the right decision for you.

I hope that my experience was in some small way helpful to your decision making. Be well and drop me a line. 🎗

Should I Even Talk About Heart Transplant & Cancer?

I am alive and writing this blog because of the generosity of my heart donor and their family.

Heart Transplant donors must be deceased….Yes, this seems like an obvious statement to make, but I’ve had several people ask me “how is your donor doing?” I have to stifle my laughter, because I tend to find humor in the darkest situations, then I explain that my donor died.

I’ve had two people respond in disbelief and that’s when I had to explain that you need your heart to live and you only have one heart.

And no, they have not done a brain transplant (yet); this remains an urban legend.

I think they were confused with the most common type of transplant: the kidney transplant, where you can have a living donor and both can live with only one kidney.

Currently, there are 102,928 people in the US waiting for a kidney, whereas there are 4,014 waiting for a heart. Recieving a heart transplant is rare in a country of 300 million people, whereas living kidney donation is more common.

I don’t know anything about my donor. Due to privacy and ethics rules guiding transplant, I am not even allowed to know their age or gender. All I know is that I have a “young, vibrant heart,” at least that is what my transplant doctor told me.

At my one year “Heartiversay,” I wrote a letter to my donor family expressing my humility and gratitude. The social worker at the transplant clearinghouse confirmed that the family received my letter, but they did not reply with their written consent allowing us to communicate or for me to obtain any information. Communication between a donor family and recipient is like exchanging information in a closed adoption, you have to go through a third-party and both have to agree to the communication.

I share with you my thoughts about organ donation and my experience as a heart transplant Recipient, because I believe communication can be beneficial, but I also know that this is a very sensitive topic and taboo.

It’s taboo because heart transplant requires the traumatic, sudden death of another person, so that you can live. Unlike cancer treatment, you battle on your own and if you get a bone marrow transplant, the donor does not die.

I debate with myself every time I write a blog about organ transplant, should I put this information out there? Is it too personal? Will I scare someone on the Waitlist? Will I offend a Donor family? Will I discourage organ donation (goodness, I hope not! Please register to be an Organ Donor).

I think if you’re facing an organ transplant it’s helpful for some to know what you’re in for…I mean, I was 3 months on the Waitlist before I learned to say heart transplant “Recipient,” and not “survivor.” Faux pas! You don’t survive a transplant, you recieve a transplant.

It’s different language in the cancer world, when you’re in treatment you’re considered to be a “warrior” in the “battle,” and once your scans are clear or you reach a milestone in time (say, 1 year clear), then you’re a Cancer “Survivor.” I’ve battled cancer twice and I’m a proud “Cancer Survivor and Heart Transplant Recipient.”

Language is important.

Some Recipients are offended and/or have a deep emotional response to discussing their donor (or what they know about their donor). They do not like being asked, “so do know who your donor is?” This can be a triggoring question.

Others feel it’s important to share their donor’s picture and biography, especially on Transplant Anniversaries.

Sometimes I am very curious about my donor and other times I tell myself that this is my heart now and I can’t obsess about who had it before me. I respect that my donor family may be too grief stricken to engage me and the other recipients. I do send my prayers out to their family for the loss they have experienced. I can only imagine the depth of their grief.

But this leads me to ask, should I share such personal thoughts about my experiences with heart transplant and cancer?

I welcome your thoughts and comments. Thank you for taking the time to read my blog. And do consider being an organ donor, because lets face it you can’t take ’em with you!

Here is a YouTube video that I made 5 months before my transplant. I really struggled with this notion that Someone has to die, so that I can live….

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.

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

Featured

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.