So much has happened since I last wrote. My life has become completely upended. I feel like I am somehow both drowning and spinning in circles in the air as if caught in a tornado.
I’m not just a regular mom, I’m a sk8r mom
I started skateboarding a couple years ago. I wanted to as a kid, but was never brave enough. A coworker let me borrow their board (which I still have). It took me longer to skate to work than to walk.
Then I spent time being pregnant, getting cancer treatment, and then being a mom. It fell off my list. But I decided to get back into it several months ago. It was slow going again, and I ended up getting a pain in my side that I thought was a muscle cramp from how tense I was on the board.
Then it got worse. So I went to my primary care doctor. I saw the nurse practitioner instead, and he ordered a CT scan. They found an ovarian cyst and got an ultrasound which came back negative for cancer. Good, but it didn’t solve the pain. I went back 3 more times to the doctor (who I never saw any of those times). I also went to my OB. They said the pain was probably not from my cyst, but to talk to my oncologist.
Wait what?
It turns out when they did the abdominal CT, they also did a chest CT and found nodules, and did not contact my oncologist despite being in the same system. When I contacted my oncologist they said it looked like stage 4 breast cancer which had moved to my lungs. I asked how long I had and they said 1.5 years was the average prognosis.
I felt so much heartbreak I did not think I was even going to make it that long. The emotions that chewed me up, swallowed me, and digested me made me physically nauseous. I wanted to stop breathing and scream and lie in a puddle and punch somebody. It was like being in parallel universes at the same time and being aware of all of them.
My spouse and I wept so hard we physically shook. My family started a GoFundMe. The news reached out and did an interview. I went to more appointments. I was, and am a puppet on my own crumbling stage and I have to pull the strings to get me to do anything. Like last Friday when I went to get a PET scan and then couldn’t be around anyone for 6 hours after because I was radiated so I randomly drove to Iowa and back.
Vibe Check
This week has been a year long. They did a biopsy where they went down my throat with a tube under anesthesia. I got to cough up blood for a couple days, and the results came back normal lung tissue, meaning they did not get any part of the nodule. Monday we thought we had scheduled a surgery to take a part of my lung and biopsy that. It turned out to just be a consult. I was mad and confused as was my care team including my family.
Tuesday the election did not go the way I wanted to, and added to my plate was the stress of how I as a woman might be treated, but also how the LGBTQ2+ and BIPOC communities will be treated going forward. Wednesday they did another biopsy where they went through my back with a needle because they found a spot behind my lung after the PET scan.
Today we went to a different hospital for a second opinion. The experience was completely different. All of the staff were super sweet. The NP and doctor both sounded more optimistic, and said there was nothing life threatening happening yet, so I had more time to do more tests to get the exact right treatment for my type of cancer because they were disappointed in the testing that had been done so far. They also have access to clinical trials which the place I have been going to does not have access to.
It has been a confusing wall of information thrown at us. I have been scared, angry, sad, hopeful, accepting, confused, empowered, grateful and pissed. But now I am switching to a new doctor who will hopefully treat me better, and get the right treatment plan going so I can live as long as possible with metastatic breast cancer.