Thursday, April 23, 2015


I had the all important meeting yesterday at Seattle Cancer Care.  Last week we got the "letter" from them letting us know that they had found a 10 out of 10 criteria bone marrow donor match for me.  To which my father replied "good luck."  Thanks Bob.

Anyway...yesterday they checked my spleen size to see how this $9G a drugs been working over the last 7 weeks.  Doc said my 30cm spleen is now a 25cm spleen but it needs to be 22cm spleen in order for me to keep it.  So she's gonna give me another month on the drug before this Malkoski engine overhaul happens.   I also agreed to be apart of the clinical trial where 33 people with Primary Myelofibrosis are studied from the beginning of treatment to the end so they can determine the proper protocal for treating this crap.  "Yea, I'll be part of it, what do I get out of it?"  "Nothing, you get to pay it forward."  Cool.

So it looks like I'll go to Europe for my partner meetings at the beginning of next month, come home and start the process, which is:

Step 1,  June 1-21 - 3 weeks of testing my organs and body to make sure they think I can live thru whats coming up, as well as teach and train Lisa on how to care for my sorry ass.

Step 2,  June 22 - July 20 - shit goes down.  I'm now in the hospital for these 4 weeks.  First 6 days are doing this Cytoxan chemotherapy.  I guess "I'm young and in good shape" so I get the gnarly kill all chemo vs. the old guy mellow shit.  Oh yea, I'll have this Y like port inserted in me so they can fill me up with drugs, fluids, medicine and bone marrow.  I think she said I'd have it in me for like a mellow 5 months or something.  "Yea just put Saran Wrap over it to shower."
On day 7 they put the bone marrow cells in me.  And then we wait and watch to see them take or what not.  There is this thing called Host Vs. Donor disease where your body tries to reject the new marrow coming in so at best case scenario (I hope) I'll get rashes, bone pain, and other good stuff like that.  But it means that the good cells are growing and matching up with ya.  I'll spend the rest of the month in the hospital getting monitored and what not at this time.

Step 3, July 21 - October 15 - All will have gone rad and they'll let me go home.  At this time I'll be at home out of the public getting my immune system back.  I'll be back and forth between home and Seattle Cancer Care every other day doing tests, making sure I don't get sick and things are going as planned.  Lisa said "Looks like I'll get you a bus pass."

Step 4, October 16 - January something - All is going well and I'll be rolling into Seattle Cancer Care once or twice a week, I'll be on immune drugs and can get back in the office and start working again.  Maybe if things are going good, get a little travel rolling.

Step 5, January 2016 on...-I'll be getting used to my new me and figuring out how to live my new life as I was told that "life is going to change for you, this will now be your new normal" whatever the fuck that means.

So there it is, somewhat of a plan above.  They say the most important time in this whole thing is from the day they put the marrow into you until 100 days later.  These are the crucial days of this experience.

Man, I'm gonna make sure I savor these last days here with Lisa and the kids, as well as this last trip to Europe.  Who knows what new me is gonna be like.  Maybe the chemo will have reverse effects and grow me some hair or something.

Lastly if your reading this, thank you.  Thanks for being part of the old John and Johns world.  I had a pretty good time being that dude because of you guys. 


  1. it's been an incredible ride, man! And how great that you pushed yourself so hard, for as long as I've known you, to make the most for yourself and others, every weekend, every season, every year. Always.

    (as for the new John: when i had my crosseyed/brain thing - in NO WAY as heavy as what you're dealing with - a doc told me, "well, you'll never be 100%", and i said, "no, wrong, I WILL be 100%. I'll just be a DIFFERENT 100%".)

    Thank you for the update and the time-map.
    We all got your back, you know that.

    Drink some good wine over there


  2. Oh no, I hope that treatment doesn't change you into some NICE GUY or something! We all like you just the way you are.

  3. schfaaaaack yes , what john said!