In the summer of 2015, I was having what can only be described as an identity crisis. With just three words “you have cancer,” I knew I was facing months of chemo, a surgery that could result in the removal of one or both of my breasts, and weeks of radiation. It happened so quickly and it was so surreal, that I often felt like I was playing a sick joke on my friends and family when I told them the news. This new identity of breast cancer patient was thrust upon me.
Over the next month, chaos ensued as is typical with a cancer diagnosis. In addition to the breast cancer, a PET scan revealed something very small, but very suspicious in my neck and in my lung. My family and friends rallied behind me and with fierce conviction assured me the cancer was confined to the breast and that it had NOT yet spread to other organs. They were only half right.
They were right that the breast cancer had NOT spread to my neck. A biopsy revealed that the suspicious lesion on the scan was in fact, thyroid cancer. It had only been 10 days since my original diagnosis and I was now facing not one, but two cancers. The good news was that thyroid cancer was very slow growing and easy to treat, so I dutifully assumed my new role as a double cancer patient.
The PET scan however, also revealed one tiny (6mm) nodule on my lung. My team of doctors agreed that I would require a lung biopsy in order to rule out a metastases. There was a lot riding on this biopsy, which proved to be the most challenging hurdle of my diagnosis. If the biopsy was positive for cancer, this would mean that my breast cancer had metastasized and my life expectancy would be significantly reduced. Only 6-10% of patients were diagnosed de novo metastatic, meaning from the beginning, so I remained optimistic, but I also knew it was definitely a possibility.
On Friday April 24, 2015, just 2 weeks after my diagnosis we did the lung biopsy early in the morning and a few hours later I woke up to an enormous amount of chest pain and shortness of breath. My lung had been punctured from the biopsy and I required a chest tube until the lung re-inflated. They told me it would take about 24 hours, which was good news because I would begin my chemo regimen on that following Monday.
Monday came and went, my chemo was postponed, and I was still stuck in the hospital with a tube in my chest. I felt angry that this was happening to me, sad that my body seemed to be failing me, and helpless that I couldn’t even get started with the chemo to kill these damn cancer cells. After nearly a week in the hospital, a doctor came to tell me the results of the pathology on the lung biopsy. As much as I wanted to be in that 90-94% of patients that are not diagnosed de novo metastatic, the results showed HER2+ cancer cells in my lung. This meant that the breast cancer had metastasized to my lung and I was indeed a stage IV breast cancer patient. I was 34 years old, in the prime of my career, training for a triathlon, and in the first serious relationship I’d had in a decade. But in just 3 short weeks, I was forced to put that life aside and assume several new roles: breast cancer patient, thyroid cancer patient, and a person with a terminal illness.
I would like to think I masterfully accepted these new identities with grace, but frankly, I sucked at it. I remember watching my family, almost like an out of body experience, crumble to pieces with each new wave of bad news. I mostly felt anger. I was mad as hell, which after the initial shock of it all, lit a fire inside of me to fight. I did eventually get out of the hospital and begin 4 grueling months of weekly chemotherapy. I then endured a double surgery with several complications, and lastly 5 weeks of radiation.
At the end of all the treatments, I sat with my brother and boyfriend at a bar scrolling my emails, when I came across the lab results of my most recent scan. I had to read the results twice.
The scan revealed that not only had the original tumors found in my breast disappeared, but the spot on my lung was also gone. I had had a complete response to my treatments and I now showed “no evidence of active disease” (NEAD). NEAD is what all stage IV patients strive for; it is the best-case scenario after being diagnosed metastatic. I resisted all the other identities forced upon me, but cancer survivor was an identity I embraced completely.
As quickly as I had been forced to enter the world of cancer, I felt like I was plucked right out of it and placed into some kind of purgatory between having cancer and being healthy. I imagine many patients, no matter what their initial stage, feel the same. They are safe for the time being, but not completely.
So how does one live their life “normally” after being told they have a chronic terminal illness? It’s been 2 1/2 years since my diagnosis and the fear is still with me- sometimes it looms large, and sometimes I forget it’s even there. I’ve spoken to 5 and 10-year survivors, and they say the same; the fear never really goes away, you just learn to live with it.
Fear can be an excellent survival skill, but chronic fear, is unsustainable. I’ve sought out ways to manage that fear and enjoy the life I have left to live. Part of enjoying my life meant scrapping all the rules I made for myself previously. Instead of running half marathons, I now do yoga and meditation. Instead of being a strict vegetarian, I eat meat when I feel I need to. I have learned to be much more accepting of my limitations and much kinder and forgiving of myself.
Cancer gave me a glimpse beyond the smoke screen of security that nothing bad would ever happen to me or to my loved ones. It taught me that feeling “safe” is merely an illusion. None of us are immune to the pain one can experience in a lifetime, whether it be cancer, divorce, or loss of a job. Any number of bad things can happen, and the only thing we can control is how we choose to respond to the adversity.
I choose to live my life and not succumb to the fear. I’m planning a massive 40th birthday party (still 3 years to go!), which would make me a 5-year survivor. I feel lucky to have lived such a full life already filled with lots of travel, an amazing career, and an abundance of love and support from friends and family. But there is still so much I want to do. I’m in a transitional place now in my career and I’m considering translating my cancer experience into a career that offers support and hope to other patients living with this disease. My story is not yet finished, and I’m excited to see where it takes me.
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I just read your blog Chrisine and you really hit the nail on the head with how a cancer patient feels. My latest PET back in August showed a great response to my current treatment. I was cautiously thrilled. We, as cancer patience, have to strike this balance between elation and terror. It sucks! But I try to live everday with joy. I am blessed in many ways and that’s what I try to stay focused on. I am believing for you to have a blowout 40th birthday party. I am excited to read your blog about it. Stay well and happy my friend!
Thank you Colleen! I am SO happy to hear you had a good response to your treatment and that you continue to have a positive outlook.
Loved your story. I struggle daily with not slipping into that dark pit that beckons to me as a Stage 4 breast cancer survivor. I’m 9 months out from chemo and about to have another PET for restaging. Wanting to be hopeful but kind of waiting for the other shoe to drop. Chosing to live joyfully takes effort every day. Thankful for my faith. Best of luck to you.
I’m so happy you enjoyed reading the blog and it’s nice to know most of us survivors feel the same balancing act of being realistic vs being optimistic. I too have found ways to cope using yoga, mediation, quitting my job and focusing on advocacy, etc etc to manage the daily fears. I can tell you that time helps too! I am almost 3 years out from my original diagnosis and the scans get a little easier each time. Good luck with your next PET scan and thanks again for reading and sharing!