One Year Later.

A list of things I had never done before this all started.

It Starts

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 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?

Working/blogging from truck…

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.