My Patient Story
Congressional District: WI02
Cancer, Rare Disease
After nine hours of tests, bloodwork and scans, the ER doctor finally returned with all of the results. “Is there anyone here with you?” he asked. In fact, I was there alone. The pandemic was in full force and my neighbor had been generous enough to bring me to the hospital that morning since my husband and son had taken off for a hike so that I could sleep in. “Do you have the scans back?” I asked. “Yes.” “Are they bad?” “Yes, they are.” Well, I thought to myself, I can only think of one really bad thing that would make him look at me like that. “Do I have cancer?” I asked and stared into his face. “Yes, I think you do. I spoke with the radiologist, and we see tumors everywhere in your liver and in part of your lungs.” Mic drop.
Three months before this unexpected turn of events, I had started to feel nauseous and weak, sometimes unable to get out of bed. Since I was vegan and had been rocking the Peloton bike, my doctors first thought that I had severe iron deficiency. My blood work showed minor anemia, so I tried eating meat and felt immediately better. Several more energy crashes left me on the couch for days. More blood work followed, my office visits denied because of the pandemic. The irregularities in that blood work led the doctor to believe I had a gastrointestinal disorder such as Crohn’s Disease. A dull, pulsing ache in my abdomen landed me in the ER two days before my appointment with the GI specialist. I thought that perhaps my spleen might rupture. Not the case.
The following week, everything was rushed: my biopsy, organizing childcare, and setting up the dreaded appointment with an oncologist. Words cannot truly convey what each member of my immediate family experienced during that hazy, terrifying week of waiting. We were all just trying to survive, Googling like maniacs for any shred of hope.
The appointment with my oncologist did not go well. He informed me that he didn’t know what kind of cancer I had because he could not identify where it originated, so his best guess was a liver cancer called cholangiocarcinoma. “What stage?” I asked. “Stage IV.” He added that most liver cancers are discovered at late stages, and that developing one was just a crappy roll of the dice. “Well, what is the treatment?” I asked. “There is no treatment. We can try and prolong your life, but there isn’t any cure.” Another mic drop. I had to ask the scariest question next: “How long do I have?” His reply was the worst I could have imagined. “You have six to eighteen months, not all of it healthy. I suggest that you drink wine, have lots of sex, eat what you want and just start living.” That got the tears rolling. “So,” I replied, “ you are saying that my path is chemo, hospice, and then death?” “I am so sorry,” was all that he could say. His eyes teared up and he took off his face mask. “I know how you feel because I also have a 5-year-old son.”
There it was. I was going to be dead in about a year, and I was going to have to tell that to my child. I sat there, next to my husband, both of us speechless and crying. How could this be happening? This is just in the movies, I thought to myself. This just happens to other people. I got myself together and looked at the doctor. “Well,” I said, “it seems like you need a miracle patient. And I am going to be that miracle!”
From that moment forward, it was my optimism against his pragmatism. Finally, after I continued to hound him about genetic testing results, he informed me via email in all caps that GENETIC MATCHES WERE HIGHLY UNLIKELY AND I DON’T WANT YOU TO GET YOUR HOPES UP. Okay, but really - what else was I to do but hope?
I began chemotherapy. All of the doctor’s explanations and all of the literature I had read did not prepare me for the nightmarish side effects. Between those and my doctor’s negativity, I knew that in order to survive I needed to change something. I was connected to a local advocacy group and learned that I could change oncologists.
I met my new oncologist, who I now refer to as my queen, and things began to change. Dr. L encouraged me to believe in life, and I knew she was after my heart after she bequeathed to me a fat binder full of resources ranging from Gilda’s Club to local hypnotists. Shortly after making this switch, during one of my chronic hospital stays, she shared the incredible news that a gene therapy had just come out of trial, and I was a match! That miracle that I had promised my first oncologist had just planted its seed, and I watered it with my tears of joy.
During the next several months, things were not easy, but I kept envisioning my future and making decisions based on the assumption that I was just going to keep waking up and living my life. While I suffered greatly due to illness-related side-effects, I also tried to engage in activities that were life-affirming. I became a certified yoga teacher. I joined a program to become a certified health coach. I started dancing salsa again. I began attending a weekly book club called The Wolf Pack with a few amazing, wild and wonderful women in my neighborhood. I got back on the Peloton and off of Netflix. I started reading again, and I financed an industrial-grade juicer. I started acupuncture, ancestral healing, wearing a healing stone, getting infusions, doing breath work, teaching yoga, and reading everything by Joe Dispenza that I could find. I made it to Florida to visit my family, and was able to see my son swim in the ocean. I adopted a puppy to go along with my cat.
I realized how much I benefitted from hearing others’ stories. This compelled me to look for ways I could share my own. I felt that it was my absolute duty to use what I had learned from my own struggles with cancer to ease the burden that so many of us endure. So, I started a business called Savage Surrender, which seeks to help people by coaching them and their families through their struggles with chronic health issues. I also choose to do one thing each day that pushes me out of my comfort zone. For now, that daily discomfort is publicizing my life on Instagram. My inner school teacher continues to cringe every time I check my feed. My deepest apologies to all of my seventh graders - I totally understand the addiction.
Cancer has truly become my life muse. Through my relationship with this disease, I have surrendered to living as a new version of myself. Having cancer isn’t a death sentence; instead, it has shown me to live in a sublime yet savage way.
My Motivation and Inspiration
- increase awareness about rare cancers
- share resources and support
- encourage people to defy medical odds
- promote the importance of finding doctors who see you as a living patient, not a dying one
- remind others that there is good reason to hope, as medical breakthroughs are always happening
- promote yoga, mindfulness and alternative medicine as a valuable part of the healing process