A lot of big things happened for me in June, but the most significant was ironic… June marked my 17th year in remission for Hodgkin’s Disease. This past June I received my second cancer diagnosis: ductal carcinoma in situ (DCIS) in my left breast. Stage 0, non-life threatening and non-invasive breast cancer, found because I’ve had mammograms/MRIs annually since age 24. To prevent recurrence, I will have a bilateral mastectomy on August 6. Reconstruction will begin at the same time.
Holy shit. Buckle up.
Like I was told so many years ago, my breast surgeon said, “You are lucky. Your cancer was caught early. You will be cured. But, your road ahead will be tough.” Dealing with chemo and radiation in high school WAS tough. I’m relieved I don’t need it again , but a bilateral mastectomy with reconstruction starting in August is a whole different kind of tough.
I’m aware that not everyone knows my story from the beginning, and that has everything to do with the present, so like any story, I’ll start from the beginning… get a beverage of your choice, this post will be the longest one.
I have no family history of cancer. I was diagnosed just days before my 16th birthday with stage 1A Hodgkin’s Disease. I’ll never forget the moment the oncologist said, you have Hodgkin’s Disease, and the sound of my mother’s breathing as we processed that… I had no idea what the doctor was talking about, I had no idea he was even an oncologist, until I heard the words “chemotherapy and radiation.” Then I understood everything. And I was mad. I was so mad. The doctor was talking, but I heard nothing. Then he looked me in the eye and said, “This is going to be a tough 6 months, but after it’s over, you’re going to be cured.” And I thought, well, my sweet 16 is in two days. At least I can party like a rockstar, in a beautiful dress, with my closest friends and family, before all of my hair falls out and I spend the next several months barfing. The thoughts of a teenager…
After one surgery, a bone marrow biopsy, dozens of scans, 3 cycles of chemo, 14 days of radiation and one last surgery to remove my mediport, I WAS cured, for all intents and purposes… but by no means was I done with cancer.
Those 6 months WERE tough. Chemotherapy is disgusting, and not just because you feel nauseous and lose your hair. You lose your taste buds. You’re on a ton of daily medications to prevent infections. You’re given steroids which bloat you and keep you up all night. Your face becomes round and your eyes get dark. You are tired. You have to give yourself daily shots to boost your white blood cells to fight infections. Those shots make your joints weak and your knees give out (your bone marrow is tired from overproducing). Chemo stops your hormones, so my body went into early menopause and I had hot flashes day and night. You can’t be around germy things. If you develop a fever of 100, you have to go to the hospital. Luckily I was never admitted, I came close once.
I was optimistic through the entire experience. I was being treated in the pediatric ward at LIJ, surrounded by children and babies who were much sicker than I was. Some would never leave the hospital. Some would never reach their 16th birthdays. I had so much to be grateful for, and still do. I would be cured. And I never forgot that. Over the years, people have told me how strong I am. My response is, how can you be anything less when you see children, who only know the inside of a hospital and still manage to laugh, smile, play, hug their parents, share their toys and be brave through all the needles, and overnights, and pain. You learn to be strong right away.
I saw the bright side of chemo. No hormones means no monthly period. FLAWLESS skin on what used to be a broken out adolescent face. No hair anywhere, I loved not having to shave my legs. And a shrinking tumor with each cycle. My treatments were working. They were also creating long-term risks I would have to stay on top of for the rest of my life.
- Hypothyroidism and potentially thyroid cancer
- Cardiovascular problems
- Susceptibility to bad sunburns
- Bone density issues
- And breast cancer… a 20-30% increased risk
All because of those 14 days of radiation.
In the last 17 years I’ve had countless chest x-rays, blood tests, cat scans, pet scans, gallium scans, EKGs, echo cardiograms, stress tests, ultrasounds and mammograms/breast MRIs. I’ve had more health scares than I can count. I’ve spent thousands of hours convincing health insurance companies to cover these tests, as if they’re elective. I’ve spent even more time navigating what it’s like to be treated as an adult, no longer a pediatric patient. I learned that sadly, most healthcare administrators don’t care enough to go beyond their most basic duties. Medical records gets lost, messages get lost, doctors forget to call you back, they forget to remind you to come for your annuals. You fall through the cracks of our unfortunate healthcare system, as if you have time to make sure healthcare professionals are doing their jobs. You have to be your own advocate, you have to raise your voice, you have to be assertive, direct and sometimes rude. Thank goodness LIJ enrolled me in their survivorship program once my 10-year remission visit was completed. They handed me a roadmap to ensure I stay healthy and this has been invaluable. They still keep in touch.
In 2009 I had a private reading with a medium who pointed to the spot on my left breast where the DCIS was just found. She told me, there’s a lump there. I told her I’d just had my mammo/MRI and all was clean. She said, if you don’t have it now, you will. It’s going to be fine, cancer isn’t taking you down, just be prepared.
In 2011 an ultrasound of my thyroid showed a tiny nodule that my endocrinologist insisted on biopsying, given my history. This came back atypical and without question, the recommendation was to remove the entire thyroid. It was already barely functioning and if there was one nodule, there would be more in my future. First broken body part removed…
In 2012 when I went for my mammo/MRI, the radiologist said he wanted to do a quick ultrasound. I couldn’t believe my ears, even though the medium had prepared me years prior. They focused on the spot in my left breast where she had pointed to, but said nothing to me. When I started asking questions about how big it was, the radiologist looked at me, shocked, and asked if I felt anything, did I have any pain. I just said no, you wouldn’t believe me if I told you. He said, I can only describe what I we see as a cluster of cells. We’re not sure what it is, you are young, your breast tissue is dense. It’s something we should monitor, come back in 6 months. After two more MRIs, and no more changes, I was told to resume my annuals.
This past March I had my mammo/MRI. About a week later I received a notice from my post office that someone (recipient not disclosed) was trying to send me a certified letter… could have been from anyone. I work M-F, 9-5 and am never home to accept a certified letter. Those are also the post office’s hours. When would I ever be able to get this letter? And why should I make it a priority? I had no urgency to do so since I didn’t know who was sending it. I never received one phone call from a doctor, why would I have any reason to believe it was from mine?
Almost a month later, on a Saturday before a business trip to Las Vegas, I made it to the post office before noon. I was handed one envelope, with two letters in it. The first read, your mammo came back fine, please come back next year. The second letter read, your MRI was abnormal, please follow up with your doctor ASAP. HUH? Did the person stuffing the envelopes even read them? Did the person typing the generic shitty template put two and two together? DID ANYONE TRY TO CALL ME? The next business day, from my hotel in Vegas, I spent several hours trying to connect the dots. What were my next steps? What does “abnormal” mean? Why hadn’t the radiologist just done an ultrasound like he had in the past on the same day I’d had my MRI? I spoke with the OBGYN who had ordered the MRI, and the radiologist office who performed it. Nobody could give me a straight answer, nobody would take responsibility for never having called me, nobody could tell me how I’d fallen so far through their cracks, but after two hours, they finally confirmed, you actually don’t just need an ultrasound, you need a biopsy. The cells grew.
Then, shit got pretty gangster. People started doing their jobs really quickly. Or so I thought.
I had an MRI-guided biopsy on May 1. A few days later, my (incompetent) OBGYN called with the results. She was a day early, so I knew it wasn’t good news. In her bubbly, amateur voice, she said, “I have GREAT news and some not so great news. The GREAT news is, you don’t have breast cancer, so that should be a relief… BUT, you have atypical cells, so you really should follow up with a breast specialist, I can recommend someone in the area for you.”
No thanks doc, I’ve got this.
I called my mom. I made an appointment with a breast surgeon on Long Island to appease her, and another closer to where I live upstate. In my mind, I trusted what the medium had said. This was not the end of the world, I was going to be just fine, but what I had to deal with was just an inconvenience. I had already decided to have a lumpectomy. I didn’t want atypical cells turning into something worse.
My appointment with the LI breast surgeon, Dr. B, was June 1. Weeks prior I had requested to have my medical records sent to her in advance, and the radiologist’s office sent them to the wrong office. More frustration, more waiting… I finally went into the exam room and Dr. B asked what brought me to her. I told her a biopsy had shown atypical cells. After a few minutes, she asked me to dress and meet her in her office where we could talk. In there, she told me, “I don’t know who told you you have atypia, that was wrong information. This is more serious. You have DCIS, it is early stage breast cancer that requires treatment, and there are a few options we need to discuss…”
And all of a sudden, I was right back in that moment. I heard my mom’s breathing. She grabbed my hand. I completely lost my shit. Except this time, I heard every word the doctor said, because when you’ve been where I’ve been, and know what I know about the healthcare system, you pay attention.
A lumpectomy was an option, but only if followed by radiation, which is what landed me here in the first place. Another alternative was to follow a lumpectomy with 5-10 years of tamoxifen, a good drug, but one that would mean no children (you cannot be pregnant on tamoxifen). At 33-years-old, that is not an option for me.
Bilateral mastectomy it is. I don’t want to worry about breast cancer ever again.
This is just the tip of the iceburg. There is much more to tell, but this was a lot… process it. I’ve learned a lot of lessons, some of which you may have picked up from this first post, but more that I will share as this ride continues. When all else fails, you know what? You just gotta be tough. #BOOM