Tuesday, February 24, 2015


That's how much this bottle of pills is.  Nine thousand, seven hundred dollars.  That's $161 a pill.   R you fuckin kidding me? 

So I get a random call yesterday.  "Hello John?  This is Abby from Seattle Cancer Care, your prescription for Ruxolitinib is ready."  Uh what?  I got no prescription that I'm waiting for.  "Well Dr. Becker sent down this prescription and it's ready for you.  You've talked to her about it, right?"  I haven't seen or heard from Dr. Becker in over a month.  And that stuff your telling me is for me is the reason why I went to Dr. Becker, to get a second opinion if I should take it or not.  And she said (2 months ago) that it would be like putting a band aid on.  And now she's prescribed it for me?  "Well it's to help the symptoms of your enlarged spleen, that's why she prescribed it."  Cool.  Thanks for the heads up.  I'll be by tomorrow to pick up my pills.

Love the fucking communication with this bullshit.

Thursday, February 12, 2015


I'm in the SLC airport, going thru the check in process when I get a call from Dr. Beckers office.  "Yea, hey John this is Dr. Beckers office.  We are going to have to cancel next weeks appointment as something came up for Dr. Becker and we don't know when we can reschedule."
Oh really, well I was really looking forward to this one as we are supposed to figure out a plan of attack.  When I go to clinical trial, if I go, when we do the bone marrow transplant and if I have a donor match.
"Oh...well what you could do then is go right to the transplant people and we can get the ball rolling there."
Fuck THAT!  We're supposed to make a plan, that's why were meeting. 
"Ok, well I'll call you back and we'll make a plan with Dr. Becker and the team."

Yea...cool.  Once again another waiting game.  In the meantime, I'm driving home from the airport to see the family and I call my mom to check in and see how their doing with the east coast blizzard situation.  Come to find out that she contacted my Dads cousin and asked if one of their kids would be a bone marrow donor to me.  She thinks we'll  match up because we're kinda related, have similar ancestry and all that.  "Tommy's son agreed to be a donor to you."  The gesture and commitment to this absolutely blew me away and I don't think that she could tell that I was driving and crying, but I was. 

Today, Lisa picked up the phone and called Sonny at Dr. Beckers office to get the lowdown.  Turns out the reason my appointment got cancelled was because there's a patient of Dr. Beckers that needs and emergency transplant and their going to do it in my time slot.  I'm good with that.  Then Lisa finds out that they didn't find a bone marrow donor match for me in the USA, and they're going to have to look overseas.  And / or I'm gonna have to ask for help from friends and friends of friends to try and find a match.  They also said it didn't matter with my cousins kid and he and I matching.  Bottom line, we got to test to see if all the boxes get checked.  And in the meantime the clinical trial they wanted to get me in got pushed back once again, this time to Marchish.  And the only sort of solution to my issues they want to tackle right now is get me on some drug that will work on getting my spleen that's 3X the normal size down to a size that isn't bad.

More hurry up and waiting...