In October 2015, I began having some breathing issues which at first I attributed to a respiratory infection. My PCP, who I am ever-indebted, was alarmed after I failed to respond to antibiotics. He sent my for a stat CT scan where swelling was located in the lymph-nodes surrounding my lungs. The swelling was impeding my air intake. We discussed a biopsy, but within four days the lymph-nodes in my neck were swollen. Things progressed very quickly as the fear of rapid spread was obvious. In late December of the same year, we celebrated the best possible diagnosis, Hodgkin’s Lymphoma. HL is known as a cancer with a hard six-month regimen, but almost 95% success rate at the end of your first course of treatment. I took my chemotherapy, remained employed full-time, and kept up my single-mom duties, with some added assistance from my immediate family.
At the close of my six months, my cancer had grown rather than shrunk. I suddenly found myself in a whirlwind of decision-making. Suddenly, my course of treatment was far less clear than it first seemed. There were clinical trials, some local options. We first tried Brentuximab. Ultimately we saw a repeat of my chemo outcomes, shrinkage and then growth.
FInally, I was put on Opdivio. I lost all my thyroid function on this immunotherapy drug, which also took me on a dizzying journey of weight gain and loss, mood swings, depression, and a number of other challenges. Ultimately though, it did its job of shrinking my lymphatic tumors enough to make me eligible for a stem cell transplant.
I wanted to write about this because I believe there is universality in my experience. I am a single mom of two amazing kids, ages 8 and 10. They have grown so much throughout this process, and so have I. My abilities have not been at full-capacity in a while. We had no choice but to adjust as a family. As great parents, that is what we all do continually – we adjust.
My girls can fix their dinners some nights when I cannot physically manage. I taught them that. They pack lunches for school; they even clean the kitchen. The girls know to remind me of school notes that need signatures. They have learned to help with so many of the basics. And maybe most importantly, the kids have learned true empathy on this journey – not pity – empathy.
My family has also supported me tirelessly. It was a real struggle for me to give up so much so fast. I had to learn to voice my need for help. I had to be thankful and avoid resentment for my personal loss.
It’s a helpless feeling, being out of control. The worst moments for me are when I allow negativity to creep in and take hold. When I am positive, those around me feed off of that and things go much better for everyone. But I have every right to experience fear and sadness so when I do, I share those feelings with people I can trust. But I know how imperative it is to swing back to positive.
As I write this, I am sitting in the Bone Marrow Transplant unit in Birmingham, Alabama. I was gifted with my stem cell transplant and the crew here gave me a birthday cake and sang! I am thrilled my girls will visit and share my cake with me on my new day 1. We’re going to get to the other side, no matter the obstacles or the outcome. My girls are outstanding, and together we are warriors.