One Year Later.
A list of things I had never done before this all started.
A year ago today, my amazing doctor skipped his vacation to wait on some test results so he could tell me “If you are lucky it’s hepatitis, but I am fairly confident you have some sort of leukemia.”
A year later and I am still here, doing more stuff than, working more hours than, working out harder than, and often far crazier than, almost anyone I know. I am in fact writing this from a Safeway parking lot on the bed of my truck waiting for Distiller.com to deploy on my way to a bachelor party in the woods and desperately wishing I could be in multiple places at once so I could DO EVERYTHING. I resent the fact that I can’t do MORE all the time. Its a weird feeling.
Only here once. Why not try to do it all?
Anyway, It has been an insanely eventful year since. My sense of time is completely broken now. That isn’t a joke. I’ll explain more sometime. Anyway I promised myself I’d try to be open about everything as it happened. Here is the list (minus a few redacted details and a few that will remain private).
New Stuff, some scary, MOST good, all after thinking I was a dead man. Good news, I’m still here! :)
- Diagnosed with an unknown cancer
- Got a bone marrow biopsy
- Got a call to be an alternate at a WSM qualifier
- Turned down the WSM qualifier because I knew I was sick
- Got a call saying I was “being admitted to the hospital, and I’m sorry but I don’t know when you will be coming out”
- Cried for 2 weeks.
- Found out I was probably infertile. Who knows at this point I’ve broken every other rule so…
- Was diagnosed with a rare acute blood cancer. PH+ ALL
- Had nurses tell me how sorry they were whenever I was alone with them
- Had my first surgery (all minor but I’ve had 6 total).
- Was awake during the first surgery because my tolerance for opiates was higher than expected. Overhead the surgeon refusing to do it because my platelets were too low. I asked if I was bleeding to death at the end. I wasn’t.
- Read my odds on the internet
- Had a spinal tap (12 total)
- Started a chemo regimen (Hyper CVAD + Dasatinib for those who care)
- Had my friend group rally behind me in a way I still don’t believe I deserved.
- My blood and immune system all died.
- Was terrified of my own house for a while.
- So many transfusions of red blood and platelets.
- Then it came back, fast.
- Found out my marrow had been 100% cancer but in 5 weeks had dropped to 0.000000 %. Undetectable using the best techniques available.
- Started being prepped for a Bone Marrow Transplant.
- Saw my doctors so often that I cried when I stopped seeing them less than once a week.
- Discovered that I love pot food and that I could get by skipping 90% of my extra meds if I ate it.
- Started looking forward to stoney Sundays more than just about anything else.
- Learned I loved coloring.
- Had a 5 week headache from the spinal taps.
- Did my own meta analysis of data on pubmed and argued against my need for a transplant. I didn’t know what I was doing til later…
- Hid that from Becky for the month I did it.
- Had my data corroborated by a large study that hadn’t even come out until after I was diagnosed.
- Rode my motorcycle to Stem cell prep.
- Had a doctor cry when I made her tell me all the effects of the radiation I would undergo to do the transplant.
- Had a loud angry argument with a doctor who three hours later messaged me saying he was convinced, and sent me new studies to prove it.
- Had 3 of the best doctors in the field tell me “the truth is no one knows, and you are certainly not making a bad decision”
- Cancelled a stem cell transplant at the last second.
- Resumed chemotherapy.
- Had my first neutropenic fever, max temp 104.6 degrees. (2 total)
- Played exploding kittens high as hell on dilaudid. I hate opiate but love games and my friends :)
- Finished chemo, totally hairless.
- Been terrified of a relapse.
- Had a freakout waiting for bone marrow biopsy results.
- Went to SXSW
- Had hundreds of people at SXSW as me about my story.
- Got recruited by the medical liaison for SXSW to submit a panel (which I am working on)
- Lost my mind at SXSW (it was a lot…)
- Experienced panic attacks.
- Went back to work months before people thought I would.
- Released an android app.
- Released a new version of Distiller on two platforms at once.
- Resumed training for strongman.
- Put 150# on my bench, and 250 # on my squat in 3 months.
- Signed up for an amateur strongman contest.
- Competed with a chemo port in my chest.
- Won a press event.
- Started prepping for ASM
- Started prepping for Burning Man
- Climbed a 70 floor build using the stairs.
- Raised 3000 for charity.
- Threw a “FUCK 2016” party for New Years with my friends help.
- Got an award at a charity event awards ceremony.
- Started training for a 5k (snuck that in this morning)
- Wrote a blog post from my truck bed (this one).
- Worked from my truck bed. Right now.