I (Kate) grew up in the small town of Duluth, MN. It was safe, and I can honestly say I was pretty sheltered. When I chose to go to undergraduate in Duluth, it was important for me to move out of my childhood home and experience college life. I was introduced to a whole new Duluth, one I had never seen. When I saw an ad in the local paper for a clinical assistant job at the local detox center that paid almost twice as much as my job at the movie theater, I jumped at the chance. This was my first glimpse into a Duluth I didn't know existed. One where people were suffering from homelessness, addiction, violence, and discrimination. They were all in one place, and were supporting one another when no one else would.
Why am I telling you all this? It reminds me of the hidden world in social media surrounding cancer, and those struggling, fighting, supporting one another, and desperately seeking guidance and love. Before cancer, I was seriously thinking about deleting my Facebook account and living a social media free life. I certainly didn't have an Instagram account, and I would have never thought about writing a blog public to the world. But, that all changed when I was seeking solace and support from those who truly understood what I was going through. And girl, am I glad I did! I now have this whole circle of support I never could have imagined. Some people I have met in person, some I haven't, but either way, I feel loved and like I belong.
So, long story short, I would like to start introducing you to the people who have changed my life. Jessica Solt is one of those people who is an inspiration, and so positive and supportive to myself and others with CDH1 mutations. She feels like family, and we haven't even officially met. I asked her to write a guest blog piece, and below is her introduction. I hope she will continue to write pieces that I can share with you in the future as well.
Her piece (below) is dedicated to her friend Christine, who at the age of 32, passed away on February 11, 2019, from Stage 4 Hereditary Diffuse Gastric Cancer related to the CDH1 mutation .
For Christine, who wanted to grow old. I miss you.
When Kate, the author of this blog, approached me to write a guest entry, I fought really hard in my head, debating what I wanted to talk about. As fellow CDH1 mutants, with different journeys, I thought about all the pieces of this 3-year-health puzzle that my life has become.
Let’s start by doing a brief timeline.
Summer 2016: With breast cancer in my family, I decided to do genetic testing, not thinking anything would show up. How could it, right? Wrong.
September 2016: “You have a pathogenic mutation called CDH1. Don’t worry, you CAN LIVE without a stomach.” Well, yeehaw!
Late September 2016: After my first endoscopy, a tiny cancer cell was found in my stomach and I was scheduled for a total gastrectomy.
October 2016: Total gastrectomy was a success. My entire stomach was removed. I AM CURED!
October 2016 - August 2017: This was the hardest year of my life. In spite of a successful surgery and being cancer-free, I struggled with weight loss, malnutrition, narrowing of my surgical connection site, which required more than 20 dilation procedures, a feeding tube, total parenteral nutrition (TPN), and a second surgery. After which, things started to really look up.
During the course of this journey, I have met many admirable people. Some friends have passed away, and it has made me feel extremely humble and lucky. It’s almost like a type of survivor’s guilt, though I didn’t come out totally unscathed. You see, CDH1 is a personal journey in so many ways because you are the one learning how to eat again, you are the one learning how to live without breasts, you are the one tossing and turning at night because sometimes the demons of this wild ride won’t go to sleep. But it’s also such a shared experience, because we rely on our caregivers, friends, family, doctors, nurses, and fellow mutants. They are all part of this too, and we couldn’t survive without them.
The final leg of this journey was scheduling my double mastectomy for June of 2019. I wanted to get rid of my breasts and free myself of risk. I’m 37 and I have a son. I can’t put myself—OR my husband and son—through the ringer again. How was this part different from the stomach removal? I had control over it. Was it hard? Yes, but I will be lying if I say this wasn’t 90% less traumatic than losing my stomach. In fact, when I woke up from my surgery, the nurse asked me if I wanted to “look” and I was ready to sh*t my hospital gown. YES, LET’S DO IT. And what I saw down there was amazing. I was ecstatic with joy and the joy was such that I couldn’t sleep that night. But before you deem me ready to be admitted into a psychiatric facility, let me tell you why.
I would never hear the words: THE MRI SHOWED SOMETHING CONCERNING.
I would never hear the words: YOU HAVE A LUMP WE NEED TO BIOPSY.
I would never hear the words: YOU HAVE BREAST CANCER.
I would never hear the words: YOU HAVE METASTATIC BREAST CANCER.
And the mere thought of all these things, was the only thing that made me sob like a child that day. I thought about all the women (and some men) who WOULD hear those words in their lifetime and I felt I was cheating life somehow. Like I took a shortcut through the park during the marathon. I know it’s silly, but that’s just me.
Last week, I saw my psychiatrist and he said, “You are either in terrible denial or you are handling this better that 99% of people out there.”
I choose the latter. I lost so much, even my sanity, during those early months of my mutation diagnosis. But this was different. I felt free.
Today I am gratefully stomachless and boobless.
Jessica grew up in hectic Mexico City—where she has yet to find hard-shell tacos. After going to grad school in Boston, she fell in love and moved to New York, where she now lives with her husband and son. She is a copywriter and translator, loves food, 80s music, shoes, wine, to travel without insane itineraries and cheese—ALL THE CHEESE.