Napi Horsemanship

It was the Monday of the last week of March 2024. I decided after a rough weekend with mastitis that I was going to go into the walk in clinic to get antibiotics to resolve it after a week of attempting to get the clog out myself. As ironic luck would have it, I missed the walk in clinic by ten minutes and made the decision to go into my small towns ER. As I was walked to my room the nurse made sure to lecture me on my mistake about waiting so long and that next time I needed to get ahold of my primary doctor sooner. I walked in silence as she talked. Blood was taken and that’s when my doctor came back with the news that my labs were extremely abnormal. My platelets were at 15 and because of this it was unsafe for her to let me leave the hospital. So my journey began with me being transferred to Butte, then to Billings. I arrived in Billings on Wednesday where I under went a bone marrow biopsy and got a dialysis port put in my neck for what they believed was TTP (autoimmune disease). As I was receiving my first treatment for TTP the hematologist came in and asked the nurse to stop the treatment. He then informed my partner and I that I had leukemia. I don’t know how to explain the shock. The moment after he said those words was like an instant shift into an alternate reality. It sucked. I looked over to my partner with the pain that my young life could be lost. I was given options and as luck again would have it, Seattle was a treatment option for me and we had family there.

I arrived by a tiny airplane to Seattle Thursday night with the worse back pain I have ever experienced. I had two children naturally and remember thinking that I would much rather go through that again ten times over than this back pain. She had given me two doses of fentanyl on the flight and it still wasn’t touching the pain. For me it was more comfortable to sit up and walk than for me to be laying down on the gurney. I don’t know if it was the fact I walked that convinced the ambulance driver I must be okay but I will never forget the three bumps he hit that made me see stars. Luckily the one medical woman that was on the flight with me had my back and almost threw hands at the ambulance driver for his carelessness. I will always appreciate her so much. Even amongst the pain I remember the beauty of the view of my room with the lights of Seattle traffic with the tip of the Space Needle hiding in the skyline. My nurse gave my oxycodone for my pain, and that night I remember sitting in the chair nodding off all through the night because I was so exhausted but couldn’t sleep because of the pain.

I refer to the next week as a drunken night out on the town. There are things I remember and then things I remember later on that I didn’t. Or I think I remember something but it’s foggy and I can’t say confidently that it happened, and if it did I obviously wasn’t really there. They had to take my neck port out and put in a PICC line, which is a central line. It allows me to not have to get poked for blood draws, chemo, and transfusion. I had to have an echo done and it’s a painless procedure done with an ultrasound. For me it was more painful than my bone marrow biopsy. The nurse came in half way through and attempted to give me more pain relief. It didn’t work and I clenched the pillow sheet like it was keeping me tethered earth-side, all because laying down sent my back pain into full force. For a few days they had me on a drip of Hydromorphone aka Dilaudid to manage the pain, and they gave me unlimited access with a button. Which means that it was in fact very really and intense pain I was experiencing. They diagnosed me with either Burkitts Lymphoma or Acute Lymphoblastic Leukemia (ALL). The treatment was the same for both cancer’s so my team made the call and started chemo immediately: HyperCVAD. Because of my Central Nervous System involvement they started with cycle B first. By involvement I mean the lesions they found on my spine and brain on the scan. Because of the aggressiveness of the cancer it sucked the chemo up and my back pain was gone in days along with the mass in my breast. Looking back through the fog of the trauma I realize that I was closer to death than I like to admit. But there had been a moment back in the Billings ER room where I had made my peace with the fact I may die. It’s a moment I will never forget.

Coming back to life is how I refer to my first week in Seattle. I have a new found respect for my body after it pulled me through these first few weeks. But! There’s more. I was admitted here in Seattle the 30th of March and am currently on day 14 of being in the hospital. I developed severe thrombocytopenia. In a nutshell it means my platelets, that stop a person from bleeding out to death, were dangerously low and weren’t rising on their own. Crash course, a normal person should have at least 150,000 or 15 is the slang term. My lowest number I have been at was 2. They would infuse me with platelets but I wouldn’t get above 14 and within 12 hours or less I’d be back at 6 or lower. Because of my recent pregnancy my immune system is still in turmoil. So the issue was a combination of the cancer, chemo, and my immune system. I was given IVIG which is Intravenous Immunoglobulin or referred to as immune therapy.

Finally 14 days later Im getting “bumps” after transfusions of around 30. The team said that if I stay above or at ten for 48 hours Im allowed to go home and continue my treatment through clinic. Currently Im sitting here 24 hours in sitting at 19 still. So all I have to do is make it another 12 hours above ten and I can be discharged.

This is just the beginning of this journey and I hope me opening up and sharing will bring family, friends, and others with cancer some peace and/or connection to the situation.

Thank you for taking the time to read my initiation into the world of a cancer diagnosis. There will be many more posts and pictures in the immediate future.

Remember you can always live life harder. Tomorrow is not a guarantee.