Wednesday, December 3, 2014

Seattle Cancer Care

Lisa has been the backbone of this whole trip.  I just pretend everything's fine, and act accordingly.  She's the one that's thinking about it, stressing about it, talking to insurance companies, researching everything, and finding Dr. Pam Becker.  Thank you hon.  Dr. Becker works at Seattle Cancer Care and specializes in myeloproliferative disorders, which Myleofibrosis is under that umbrella. 
So to break it down on the heirarchy of Dr.s I've been too, my primary care physician had no clue what I had, did no follow up calls to see what I eventually did have.  Thanks dude, you killed it.  Or almost killed me.
Dr. Li, was incredible and was at the Polyclinic, kind of the minor leagues for cancer care, but was real good. 
Then we move to the Fenway Park of hospitals, Seattle Cancer Care, where they don't have to send out for testing everything and anything your Doctor wants tested.  You know why?  They do it all in house.  So here we are, at the source for this bullshit.  5 floors of walking dead people getting treated by some of the worlds best cancer doctors, and now they got a new patient. 
Lisa had me slotted in for a last second cancellation with Dr. Becker the same day I had a product line showing with one of our largest accounts.  After saying I wouldn't go, I made the smart choice to go.  The appointment was 2 hours long.  Watching Dr. Becker and her assistant Sonny were like watching a Hollywood superstar work with their personal assistant.  "Check this, try that, order this, call that guy..."  It was pretty over whelming.  But when we left, we felt like at least we were finally getting some answers to questions we've had for 15 or so months. 
At the end of it all, Dr. Becker wants to get me in a clinical trial for some non FDA approved drug that helps my Myleofibrosis.  The trial starts in late February to March.  So nothing but waiting in the meantime with the knowledge that the only way to cure this disease is to have a bone marrow transplant.  Doc said that this will go down sometime in the next year or so.  And apparently with this, you get chemo'd out first, so they can reset your system.  Then the put the new marrow in, and if it takes, and you make it thru all that shit, your good to go.  Sounds simple.  Cept 25% of the people that do this die, then there's all sorts of other bullshit complications with the transplant that can happen and what not.  So it's not as simple as it seems.  Plus your out of work / public for 9-12 months as your immune system is building itself back up.  Just awesome shit to look forward too.  "Hey bro, I'll see you in a year or so, if I live and then hopefully I can ride bikes, snowboard and just function."

Thursday, November 6, 2014

Jean Mutation

After the bone hammering session by Doctor Li, we figured out I didn't have this gene mutation called Jak2. If I would of had this mutation, there is a drug called Jakafi that would of helped me out with the symptoms I don't really show yet with Myleofibrosis. But my doctor wanted me to go on it anyway as it "may" help out with the symptom I do have, an enlarged spleen. After learning that the drug is a mellow $9G a month drug that they wanted me to take, we decided it was time for a second opinion.

Friday, October 24, 2014

Primary Myelofibrosis

So long story short, after a bunch of tests with Dr. Li, one of them being dude hammering thru my hip bones in hopes to get a bone marrow sample, they determined that I have Primary Myelofibrosis.  It's not cancer, but it's under the cancer umbrella.  This is so it gets the funding that cancer gets.  Myelofibrosis can and will turn into Myeloid Leukemia, which is a killer.  Anyway, the video above is a pretty good description of what's going on.  Then this one below kinda painful to watch but it actually talks about how to treat it.  

Friday, October 10, 2014


Friday October 10th, Milo gets out of school early and asks me to pick him up at school with our bikes on the Burban so we can go rip around TOGETHER at Duthie Hill bike park in Issaquaw.  Really, my 14 year old wants to just hang out with his pops, hit jumps and shit?  I'm all in.  We roll out there, warm up with some mellow jump lines and fun runs.  Lil dude see's this run called 12 pack or something, that's a line thru the woods with 12 sets of bmx style double jumps.  Not huge, not small, but kind of a technical run as there's lots of turning, jumping and pumping going on.  Milo says "Dad, follow me thru, let's train this thing."  "You sure?  You think I got this?"  "No problem Dad" was all I needed to hear.  Well I made it thru the first jump, into the second set and went over the bars and got pinned into the berm.  Shit knocked the crap out of me, and the picture above is me turning off the GoBro while I'm sweating like a Pollack in a spelling bee because I'm going into shock or something.
Milo ended up coming back to check on me (he got a full pull thru the 12 pack) offered me water and then had me film him going thru the line.
Well we got done with that, and I decided it was time to seek medical attention.  I called Lisa, and she made and appointment at Urgent Care because we were going to save $ on the ER charges.  After driving thru Seattle traffic for an hour we get there.  Dude does an x-ray and determines I have a broken rib but he see's some scarring on my bones and suggests I go to the ER room to make sure I'm not bleeding internally and to see what's up with all the scarring on my bones.
I get an MRI and some drugs and the news that I in fact have 4 broken ribs, a chipped scapula and an enlarged spleen.  I also am given orders to go back to Dr. Li because I have Leukemia like shit going on.  Either Myleofibrosis or Leukemia are what it's looking like at this point.