Jonathan had left for training a couple days ago. I was having the time of my life. A new man friend who treated me like an absolute princess, beginning my freshman year of college, with my first “adulting job” at a bank in the metro.
Fast forward to an awfully wintery yet Minnesota January morning in 2017, with myself and several of my friends and family packed in true Spam-like formation in an oncologist’s tiny, sterile office at a hospital in Maplewood. Two sets of grandparents were waiting anxiously to hear the news on two different phones over a conference call. It was 5 days before this day that I was told by my new primary care provider that I had cancer. It was a month before that, I had celebrated my 19th birthday. In order to get to this meeting, I had to have a lymph node removed from my neck and bone marrow harvested from my right hip. Pathology was diligent knowing that I didn’t have much time between needing treatment and recieving this really, really bad news.
Then it happened.
The doc requested that I come sit next to her and her computer so we could look at the image of my body lit up like a Christmas tree on the PET scan I had taken a couple days earlier. Not knowing how to read one, I took a picture of it and asked her to circle for me on my phone where the cancer was. After the first couple circles, I was fine. But she didn’t stop circling.
The night before the appointment, I searched anything and everything about lymphomas. You best believe I was up all night, shooketh on WebMD and trying to stage myself because I didn’t think it was as bad as it was. I had no knowledge of cancer.. and besides, young kids at 19 just don’t get cancer. Especially young kids at 19 in the military. I was dead wrong. . . well, almost. Pun intended.
Doc explained the staging process of lymphomas in my particular subset. It was said that I had Stage 4 Hodgkin’s Lymphoma, classical nodular sclerosing with no mixed cellularity. Everyone’s faces in the room changed in unison. Here’s the reality of the situation: “stage four” is stigmatized. Heavily. But while everyone was busy feeling sorry or scared for me, I had a sense of relief. I was right all along that something was horribly, horribly wrong with my body. Someone had finally figured out. Now it was their turn to listen to me.
Look at me. This is my ship now. I am the captain.
Based on my age, my oncologist had referred me to the University of Minnesota Masonic Children’s Hospital to look for potential clinical trials to participate in. After a couple of really uncomfortable experiences at the adult cancer centers for my biopsies, going to the children’s hospital felt welcoming but strange. I definitely wasn’t a kid, but I didn’t like how adults were lined up like cattle to recieve chemotherapy. There was no place to cry, to laugh, to tell bad jokes, sleep, or be yourself. After diagnosis, I became allergic to people. No, just kidding, but I really avoided human contact at all costs unless 100% absolutely necessary. I had been through rough times before, but I wanted to be able to do this on my terms.
The Journey Clinic at the University of Minnesota Masonic Children’s Hospital has two separate wings, infusion and rooms for patient consultations and appointments. At the center is the desk where the super amazing receptionists are located. My particular favorite, Michelle, was always so nice to me and so excited to see me every time I came in, even if it was for little things or just to visit. We had our first appointment with my pediatric oncologist in the JC to talk about treatment options. The waiting room was full of toys for little kids, fathead appliques on the wall of Disney and Paw Patrol characters, and a bubble water feature with colored chairs. It had the most wonderful view of Downtown Minneapolis. Finally, I had been ushered into a consult room with my family after my height and weight were taken.
The nurses were so nice, but I’m sure were sad to see another person so close to their own age in their clinic. I had my vitals recorded and the nurse left to get the oncologist. It wasn’t long before her and her colleagues entered the room. She introduced herself to me, her colleagues one after another. We had talked awhile about my history, how I got to the children’s hospital, and school and work. It wasn’t long before my family and I started the technical discussion about what Hodgkins is and how I got it. The way she explained it is that Hodgkin’s lymphoma is a malignancy of the lymphocytes transmitted throughout my body by the circulatory system, making it by definition a blood cancer, especially with my bone marrow involvement. My options for treatment were 3 things: BEACOPP, ABVD, or R-CHOP, with the first being the most effective as she was showing my family and I on the whiteboard. Then came the discussion about side effects of chemotherapy. My mom lost it after infertility was mentioned.
The way my oncologist presented these treatments to me made me feel like I was in the driver’s seat of my treatment even though I had no control over the disease-which is something that I didn’t know I’d be grateful for until now. I maintained a mild temperament throughout the whole exchange until after all the information was provided because I was really doing my part to make sure I heard everything. It wasn’t until I was asked “so how do you feel? About all this?” by my social worker, and I managed to get out “I’m okay. . .” and then the tears came. Nope, it wasn’t okay. It definitely 100% was not okay.
After going home and talking it out, it looked like we were caught in the middle of medical oncology’s devil’s trap: an adolescent diagnosed with cancer at the cusp of adulthood. What would it be? Pediatric or adult oncology? Without hesitation, we chose pediatric oncology because of one particular event. When going to the diagnosing hospital to get my bone marrow biopsy, I approached the adult cancer clinic with my family. The first thing that was said to me on arrival was “you seem lost. You look too young to be here.” From the minute I stepped off the elevator for the first time at pediatric hematology oncology at the University of Minnesota, they were nothing but welcoming. The experience at my diagnosing hospital would be an indicator of what life is like as an AYA cancer patient, stuck in the middle of adolescence and young adulthood, yet homebound and isolated from immunosuppression.
After making the decision, I got to meet my whole new team at the University of Minnesota Masonic Children’s Hospital Journey Clinic for Hematology/Oncology. Comprised of an army of nurse practictioners, residents, students, social workers, child family life specialists, pain management teams, radiologists, rad techs, can’t forget the heroes of the 5th floor, the nurses. The chefs, the volunteers who wheeled me from place to place, the urologists, and a partridge in a pear tree. With the resources I had, I was well equipped for the bumpy ride that cancer treatment was going to be, even for me, someone who graduated from military training 4 months before being diagnosed with metastatic cancer. They welcomed my family and friends with open arms and support.
On February 1st, 2017, I woke up with a new port in my chest with chemotherapy running through my body.
After two ports, 3 scans, kidney stones, a couple hospital stays, lots of delivered Jimmy John’s to the Journey clinic, the good, bad, and the ugly, I finally was released from cancer treatment in September of 2017 as a survivor of Stage 4 Hodgkin’s Lymphoma at 19 years old.
My time at the hospital and the clinic will be an experience I will never forget because of the wonderful staff there, but of course, the ringleaders of the circus, Dr. Turcotte and Nurse Practitioner Melissa Claar.
I wouldn’t be here without all of you.
Until next time,
Peace, love, and tater tot hotdish
The Terminally Illest