Chemo School day 2-3

Welcome to my new office on the 6th floor of Seattle Cancer Care, located in the waiting room of the Blood & Marrow Transplant Clinic.  Here's where I roll in and out of meetings, check ups, physicals, mentals and dentals.  
Yesterday we started off with an x-ray of my mouth.  Then to meet our Social Worker Lindsey.  Lins was more like a psychologist as she spent an hour asking us questions about how we're feeling, if we're looking for resources, how we're adjusting and crap like that.  I ended up scoring a 6 out of a 100 on her test, which ment I was pretty adjusted to the shit show that's going on and I wouldn't have to meet with her anymore to discuss my "feelings."  The 6 points that I did end up getting were from the question of:  "what do you think about yourself when you look in the mirror?"  "Uh disgusted as I've withered away to a 177 pounder because of this shit."    Oh...ok.  "And John, how do handle your feelings when your sad about your situation?"  "Lindsey, I bury those thoughts so far in the closet and close the door, that I never have to worry about them ever coming out."  "Uh...yea...well good luck with the transplant, it was nice meeting you two."
Then off to meet Dr. Marcus and my yellow team nurse Cindy who went thru one more time, step by step all the medications, complications, sicknesses, and crap that could, may and hopefully won't go down thru this treatment.  As well as me signing my life away to consenting to go thru with everything and allowing myself to be used in as many studies and clinics while I'm in treatment to further the progression in looking for a cure for this stuff.   "Listen, I don't give a crap what you do to me while I'm in the hospital trying to get better here.  You need to get samples, poke holes, do this or that, I'm all for it.  BUT as soon as I'm out of here, I'M OUT OF HERE.  I am not coming back to this place. You dig?"  They dug.

Today was a breeze.  I met with the dentist and got a hour long exam of my dental work.  Which all checked out perfect as we have killer dental insurance and I see my dentist twice a year.  Apparently with the strong chemo that I'm getting, dude said that I should plan on having mouth sores for around three weeks post chemo.  They should get kinda gnarly and I'll have to get fed thru liquid for a bit as well as take pain meds for it.  Makes flossing sound fun at this point. 
Then off to the pulmonary testing where Janet put me in this fish tank and made me hyper ventilate for 45 minutes testing my lungs and their capacity.  Bingo, scored a 100 out of 100 here and my lungs, teeth, heart and head are all cleared to go.
Testing resumes next Monday.  I have tomorrow off.  

Chemo School Day 1

Yesterday was day one in this "journey" as everyone but me calls it.  Really, getting chemo, stem cell transplant, sickness and all that shit is a journey?  I'd call that getting fucked.
Regardless, Lisa and I rolled into Seattle Cancer Care at 11AM, I checked in and got my packet to fill out about my health, prior surgery's, family history and all that other crap.  Then I checked into the blood draw and waited a bit with a bunch of living dead to get a gallon drained from my arm.  The nurse that drained me of blood informed me that she gave stem cells/bone marrow to a 4 year old 10 years ago.  She had to have the marrow taken from her hip bone too.  Pretty painful, super admirable and the kid is 14 now. 
12 viles of blood were taken.  Two for for my HLA typing, which is the 10 markers they need to match me up with the 18 year old German kid that's agree'd to give me his stem cells so I can live.  This is the final match up to make sure that our puzzles fit so he can go forward and donate his stem cells.  Other viles were my normal tests, HIV testing, amongst other things. 
From there we went up to the 6th floor and was welcomed to the "Yellow Team."  The Yellow Team is my new care givers for the next 100 days or so.  Dr. Beckers team hands me off to this transplant team and they now are the ones responsible for every aspect of my care until I get out of the danger zone 100 days post transplant.  It was sort of a meet and greet with who does what and what to do. 
Then I had a physical with one of my Yellow Team Doctors.  There was a good question and answer session that went down between Lisa, myself and him.  Things that I remember from this would be that 60% of transplants that go down from unrelated donors get graft vs. host disease.  Skin rashes, stomach cramps and vomiting are things I can look forward too if I fall in that 60%.  He was pretty non nonchalant about the whole procedure and kinda minimized our fears while talking to him.  Which could be a good thing, or bad.  Who knows. 
5 hours later we were gone, home for a Pagliacci pizza and a couple episodes of Netflix's Pablo Escobar resting up and getting ready for todays meetings which include signing all sorts of consents to be part of clinical trials as well as getting my EKG heart check up.
What a fun journey this is.

31 Staples and hard dates

I had two Dr.s visits yesterday, which ended up taking 5 hours to get thru.  This getting better shit is a full time job.  For my wife...she's the one carting my Oxy induced ass all over the city.
First stop was Dr. Johanson's spleen center.  After they called me around 1PM and said "I know you have an appointment at 3:30 but can you get here right away and we'll fit you in" I arrived there by 2PM and proceeded to wait til sometime after 3 to be seen, then finally some action hit around 3:30PM.  Efficiency.
Doc came in, asked how I was doing, went thru some motions on how he wrestled that "fucking monster" out of me and said I looked skinny.  We asked him how my liver looked, as they also did a biopsy on that.  The initial results that S.C.C.A. had gotten were scary for them.  Said it looked milky, and my Billirubin were highly elevated, whatever that means.  Doc said that my liver was one of the healthiest that he's ever seen.  The milky stuff, is from the Myelofibrosis venturing off, looking at other organs.  "Your livers fine, you got nothing to worry about."  Boom, checked that box.
Then his nurse came in and had me lay down, take my shirt off and started in on my 31 staples by my bellybutton.   Every snap, made a funny noise and then pinched the shit out of me.  I bit down on my teeth and didn't say anything til half way thru when I told Turbo that I needed a break and had to catch my breath.  She said the last guy she had in there cried like a baby when she took his staples out.  I said to her, "you know why he cried?  Cause he's a fucking pussy, now get back at it bitch."  Just kidding.  I was done, and I'm done going there.  Dr. Johanson's box is checked.

Then off to Cancer Care where I got another 3 viles of blood extracted from me before going upstairs to meet with Sonny and Dr. Becker.  Sonny comes in the room with Andrea, Dr. Beckers Physician Assistant.  I guess these guys coordinate and do pre-meetings with patients to try and get a bunch of questions out of the way so when Doc shows up, it's strictly business.  Andrea goes on to tell us that they'll get us hard dates for me to come in for 2 weeks of clinical testing, as well as a hard start date for Chemo.  Then she says that I'll come in for chemo, go home after and come back for my next fix.  Completely opposite of what we've ever heard.
Finally Dr. Becker comes in and is in a great mood and kinda has a personality for this visit.  She tells us about all the nightmare calls she dealt with when I was in the hospital at Swedish.  How those Dr.s wanted to transfer me out of there and to her, for her to care for after they just did the surgery's.  "You want my people to fix your mess, when they don't know the mess you caused?  I don't think so."  Then goes on to say how when I went Neutropenic, which means people were wearing masks around me, no flowers, no outside food, lock down shit, that the Dr. almost gave me this drug that would of fucked up my whole bone marrow transplant.  She was rolling her eyes for a lot of the chat on the care at Swedish, when she sent me there, AND I thought it was pretty good.
Finally she rolls thru my blood work.  Red blood cells, check.  Not gonna need a transfusion today.  White blood cells, check.  Their back and I need to get back on Jakfi until transplant.  Liver functions, check.  All look normal.  "Hey, does that mean I can have a beer again?"  "NO."
Then Becker and Sonny give us some hard dates.  September 8th we enroll in Chemo school.  Here they'll do all the testing on my heart, brain, liver, and other vitals to make sure all is a go and I live thru this treatment.  Then they'll teach Lisa how to care for me, the do's and don't at home and a bunch of other stuff.  We'll be there 4-5 hours a day for two weeks, until we get our diploma.  Then on September 25th, I get admitted to Poison Town.  Where in fact I WILL be admitted and staying in the hospital.  7 days of chemo starting on the 25th, then a day of rest on October 2nd, and new me gets dripped in on October 3rd with the bone marrow transplant.  They say that day is uneventful.  This life changing, life saving miracle shit just sits in a bag, looks like blood and drips into a port into me.  That's it.  No explosion, to ejaculation, no nothing.  Drip, drip, drip...
Then for 3 or so weeks I stay in the hospital on top of that, waiting for things to match, jump in and start working.  This is  what I'm scared about.  4 total weeks in a hospital?  R U Fucking Kidding Me?  That last 8 day stint almost destroyed me.  I learned that hospitals are not for healing that's for sure.  As soon as I got home from this spleen thing, I started healing but there, it was fighting thru it, being enabled, no sleep, comfort or happiness.  Just a 12 X 12 room of misery.  But Becker says I don't have a choice.  I'll be hooked up to drip lines, monitored, tested and watched and I got to do my time to pay for this Myelofibrosis crime.
Fuck me.

Pint 5

Cruised into S.C.C.A. yesterday afternoon expecting a "hows things going on" from Dr. Becker and Sonny.  Instead, got told to head to the fifth floor, lay down and it was time for another pint of blood.  This is my 5th blood transfusion since last Tuesday.  Since my bone marrow isn't making new red blood cells (myelofibrosis) and my spleens gone, they have to re-up me with some new new jew jew to my YO go when my levels get low.  2 hours later they dumped the blood pump and I was home.  Sonny did come up to the room and gave us a meeting before the meeting, which was helpful.  "Sonny, what do I do this next month while waiting for the transplant?"  "Heal, rest, your off booze, eat healthy, exercise, live your life like you would and don't do anything stupid to hurt yourself."
I can live with that.

Jail TIme

Wow, that was hell.  One minute I'm on a lake house with my bro's, eating and drinking, next thing I know, I get ripped open and have people waiting on me to fart.

 When you love what you do, and who you do it with, it's not called work.

Sunday, Monday and Tuesday was the C3 Olympics, meaning my summer sales meeting with the reps, where I got them everything that they were gonna need from me while being out on this full body makeover.

Hurry up and wait.

 Wednesday morning 10:30AM roll into Swedish Hospital, check in, and wait til 2ish to get hauled into another room to wait.  About 6:30PM they let me know i should get an epidural for the pain I'm about to have, that I'm gonna get a catheter and they will open me chest to belly button to take out what was in me.  I'm awake as their getting the catheter in, and can see them hauling in tons of stainless steel to rip the body open and hold it open.  I count backwards and boom, I'm out.  The last time I had eaten was Tuesday night around 10PM.  Over the next few days I cant piss, cause I got a tube in my hog that does it for me.  Can't shit, because my intestines are shut down from being handled, cant drink anything cause they want nothing in the bowels, can't get up because they opened me tip to tail.  From Wednesday til Saturday I was in intensive care where you have one nurse, plus a nurses assistant taking care of you and one other persons stuff for a 12 hour shift.  Monica, Vicky and this dude Greg were all time.  Vicky was a Alabama native, 60+, killer "fuck it" attitude.  She gave me back rubs, lot of drugs and my first naked body wash down.  Greg was a Seattle native, his wife works research where I'm going next at S.C.C.A. for the doctors that are working on my case and he was a graduate of O'Dea where Milo goes.  Funny the he was the one that got to pull the catheter from my wiener.  Sorry dude.  Monica was the spicy nurse that wasn't fucking around.  You were getting great care from her, that's it.  She insisted on excellence.  These three were so God damn kind, it blows me away.  I got freaking tears typing this.  To go from ripping around on a lake the day before to a total cripple is pretty humbling, and to be honest, I never expected it.  But these three killed it for me.  Thank you.

This is what a 13 lb spleen looks like, mine was 12 pounds.  There supposed to be 6 ounces.

Getting that shuffle on.

Off to regular care on Saturday, where the nurses have double the donkeys to take care of, so you might see them every hour.  Might.  I got 4 blood transfusions once I was here cause my red blood cell count was whacked, then a EKG for my heart cause it was fluttering like I had anxiety.  I went from the epidural to Morphine with cocktails of other shit.  I get 4 blood works done a day, 2 needles in the belly of blood thinner, plus a bunch of other shit.  Today I was supposed to get bone marrow pulled from my hip, which is super painful so I had taken a drug induced nap from 1-3PM yesterday, then didn't sleep a wink after.  To which time went by so freaking slow.  I swear to God, this is what jail feels like, or hell.  I was kind of an emotional mess once Lisa left to get Milo ready to go to Mt. Hood today.  Just felt like time was standing still and the pain train was here, but way worse than I expected.  This no sleeping thing and not being comfortable is absolute hell.  But...when it's all doom and gloom shit changes.  Doc Sanjay came in and said my white counts were up, and they weren't doing the bone marrow thing today.  Plus he ordered me a sleeping pill for tonight.  I took a shower, and Lisa trimmed my beard and hair.  I walked a shit load of laps here and met Tim,  a distance athlete who's heart valves exploded so he was dealing with that.  What started like shit, has turned out pretty good.  I might get to actually go home tomorrow.  Which will present it's own challenges.

Just a mere flesh wound.

But I think Lisa's up for it, as she's been up for everything.  She's done every one of the above nurses jobs for them, pointed out shit to the Doctors that they actually did, and has been an invaluable care giver to me.  She's slept on the floor or a crappy stool seat, just so she's here every night.  She's living the better or worse part of our vows and I'm sorry about that babe.  I really am.  This sucks, but we'll get thru this.

Dr. Lisa KNOWS what's up.

I promise.

Finally

As in we FINALLY have an official start date to this whole thing.  August 5th, 5AM Dr. SpleenBEgone will slice and dice his way thru my abdomen and yank my spleen out in its entirety.    Lisa thought my appointment was with a Dr. Joe Hansen, but after we couldn't find a doc in Seattle with that name, we went to Dr. Johansen's. 
Dr. Joe is 70 and has done over 50 splenectomy's with people with Myelofibrosis and all 50+ have survived.  On top of that interesting tid-bit, Dr. Joe said that all of the patients transplants took, which is a great thing.  There's research that shows that transplants take better in patients that are spleen-less in Seattle.  I only want to go thru this crap once, not twice. 
Yea I thought I'd be deep in the transplant right now, but I'm pretty grateful that things have mulled along as they have.  With this shit show not kicking off when I thought it would,  I've gotten ride a couple days of bikes at Stevens Pass, then break my elbow, get surgery, try ketamine, morphine, oxy's, get 6 screws and a plate put in, do occupational therapy 2X a week, go to all of my kids swim meats, go down to Hood a 3 times, snowboard once (don't tell Lisa), cook for 45 dudes deep in the woods at CAMPiTA with Griff, and now throw a summer sales meeting with all of our reps. 
I'll get this surgery the morning that all the reps are leaving to go back home, then have a month to recover, and we'll start all that other good stuff the beginning of September.  Right in time for the boys to be back in school, busy, and with them occupying their time thinking about what boys think about rather than their miserable ass Dad, being the boy in the bubble stuck at home yelling at them to clean the house. 

This is the stain my greasy head left on the check out table at Dr. Joe Hansons. 

Really?

Even though I'm getting my spleen removed, Doc has me continuing to take the $10G a month spleen shrinking drug.  Now at the highest dosage.   Odd, but ok. 
Also got a bunch of shots last week after the Spleen Be Gone news.  Got Meningococcal, Haemophilus Influenzae Type B and Pneumoccal Polysaccharide.  Horse needles entering my body thru the thigh, arm and ass.  Shit knocked the crap out of me too for a couple of days.  I guess since the fuel filter for the body is getting ousted, they want to get you hopped up on all kinds of gnarly vaccines. 

YOU'RE OUTTA HERE!

My spleen is, I mean.  Looks like $30G worth of spleen shrinking Jakfi couldn't get the bugger down to the required 22cm size.  It's still around 24.9cm's long.  So the new half assed timeline looks like this:  meet with Dr. Spleen next week, have Dr. Spleen remove the overgrown organ sometime in July, recover for a month or so, then get rolling on the bone marrow/stem cell transplant in August.  Shit... I just might be able to snowboard this summer!

Up Date

Last Saturday Mac and I rolled up the Skykomish to do a little yardwork at the cabin and maybe get my first and last bike ride and of the season in.  Saturday was awesome, we took a bunch of hot laps, hooked up with some friends and then got home and cut the lawn then weed whacked the lawn. The place looked pretty Chino.
Sunday we were up and at it early met up with the mayor of Skykomish Brian Schaefer and his group of dudes and ripped some more laps.  I was doing the smart thing when they went in for a beer at lunch and I said "yeah I'm just going to keep riding I'll have a beer when I'm done." 
The day was ending for Mac and I and we were rolling back to the car when we ran into one of his friends that doesn't mountain bike and we're going to do "one more run" with them, taking it easy getting down the hill.  20 feet off the chairlift going 5 miles an hour in the first turn my front tire washed out and I went down hard on the only place on my body that didn't have pads, my elbows.  For some fucked up reason, Sunday was the only day I've never worn them.  Ski patrol thought I just had a really bad hematoma, I thought the same thing so we packed up my shit from the cabin and cautiously went back to Seattle. 
Monday was a big day on the transplant timeline because we were going back to Seattle Cancer Care where I had an appointment with the infectious disease department to see if the toe fungus I have was going to hold up my bone marrow transplant.  Which it's not.  But what they really needed me to do is go to the emergency room and get my arm looked at.  Next thing I know they got me pumped up with ketamine and they're relocating my elbow into its socket and then scheduling me for surgery on Wednesday to put a plate and screws into my elbow apparently I had dislocated my elbow as well as breaking it pretty badly. 
Wednesday was supposed to be the meeting I was going to have with Dr. Becker about when we're actually going to do the transplant so that got rescheduled until the 23rd of this month.   Just a minor setback or a test run for the upcoming pain.

Sundays pain drive home from the mountain.  Thanks for the sling.

Swell bow

Pre drugs and ketamine

Post surgery, diloted, oxy and morphined up.

5 days after surgury the bandages came off.  Them puss buckets are trauma blisters called blebs.  Nasty.

 9 days post surgury

 Screwed

Keeping the spleen

For now that is.  We had the big consultation about who, what, why and how this transplant will go down with Dr. Becker last Wednesday.  She went in detail of the meeting we had on D-Day about the drugs I'll be taking, tests, mouth sores I'll be getting and other fun by products. 
She also ordered a Ultrasound to get an exact measure on my spleen to see if we keep it or cut it out.  She said "if it's 26cm or bigger, it's coming out, 25cm or smaller, we'll give it another month on the Jakafi drug to see if we can get it to 22cm or smaller before the start of this.  Last Friday I had the Ultrasound and the tech told me it was 25cm, to which I was stoked. 
Then got a call on Monday from Nurse Sonny who said it was actually 24.5cm.   So three more weeks on this drug that the price went from $9,700 a month to $10,200 a month.  $29,600 invested to keep a spleen?  Damn.  Still planning on a go day of June 1 though.  Tick tock, this shits counting down. 

Top Secret

BTW...This thing I have is not a secret.  I've told you because it effects our friendship, day to day activities and work together.  I don't intend on announcing this to the world, nor do I care if the world knows.  Don't feel like you have to keep what I have a secret.  If you know someone that should know, would like to know or will get a good chuckle over it, share it with them.  If not, mumble to yourself something like, better him than me.

D-Day

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. 

Bone marrow match

Got this text from Lisa yesterday while in Mammoth.  She got a letter from the Dr.s office saying that we have multiple donor matches for me, that are 10 out of 10 on the match scale.  Pretty stoked to say the least.  Got a Dr.'s appointment next Wed, so will know more then.

Vice TV

Breaking in down

 This vids a little long, but man does it cover all.  Dr. Bart is here in Seattle and is who works with Doctor Becker.

30-40% of the patients die from stem cell transplant?

Only 10% of the people with MF get transplants?   Except in Seattle...

I like that this dude Bart is pretty aggressive in his approach with this as well. 

The thing that gets me about the video is that these Dr's are THE Doctors in the MF field and their approach on how to treat it is all over the map.  On top of that, look at the amount of views on this thing, 16 views and two of those are Lisa watching it and then me watching it.  14 views on a video of the top Doctors in the world recently (Feb) talking about how to treat MF?

Dr.s meeting 3-11-2015

So…I did blood work yesterday here on the first floor before my meeting on the 4th.  5 viles of blood.  Then the Nurse came in and ran thru my blood cell counts with Lisa and I.  All were steady and good, except my Blasts.  When I first went to this Dr. in December, my blast count was 2, in January a 3 and now it’s a 4.  When it hits 20% then it turns into Acute Myeloid Leukemia.  And then you basically die.  If it turns into this, then I’d have to get some gnarly chemo to treat that, before they could treat the shit I got, but we’re not there yet, except the growing number is a concern. 

So Dr. Becker comes in and see’s the number, gets on the phone, orders more tests then starts talking to me like I know what the fuck she’s talking about or thinking.  Which for the most part I don’t.  So I slow her down and figure out that the number 4 kicked her ass in gear and this whole ball that I’ve wanted to get rolling is now rolling.  But there’s things that need to happen first before we get to the transplant.  Myelofibrosis is pretty rare and to treat it, they used to follow the “protocol” of treatment for Leukemia, but since I got there, there’s a specific treatment protocol for Myelofibrosis.  The first protocol is to save my spleen.  So that $9,700 a month drug I’m on needs to be in my system for 8 weeks before they can do anything, so it’s a good thing I’m on it.  2 weeks on that shit now.  Then I had a message on my phone that I didn’t listen to, that said they needed me to sign a bunch of consent forms so they could find a marrow match and get the pre approval from my insurance company.  So I did that.  That will take 6 weeks for the approval and to find the match.  I also had to go back downstairs and give one more vile of blood to make sure I don’t have AIDS.  Cause there not gonna try saving you if go got that going on.  Anyway, the Dr. said that there were multiple possibilities of a match for me in the world donor bank and it was a matter of having insurance all set before they can ask the potential match to come in and give a blood sample to send to Seattle Cancer Care to match up to all my stuff. 

So best case scenario is, we are 8 weeks away from getting the match going and starting this whole thing, but in reality it’s a 8-12 week process.  Then once we get that rolling, I need to do a 3 week pre transplant thing, and I think this is where they chemo me out or something and reset me before throwing the donor marrow in.  But right now they need to either shrink my spleen or remove it, and we’ll know what they are going to do in 6 weeks.  Cause they can’t do the transplant if my spleens still large as they think it will take all the new cells and pull it into the spleen vs. letting them take in my bone marrow.  So if I get my spleen removed then that adds a month to the transplant start process because they want you to heal first. 

Short story long, it feels like the balls in motion.  I’m on these magic pills for a reason I understand now.  The Dr. has a plan.  There are potential marrow matches out there.  I can take my kids to Mammoth for the Launch and have a good time in April.  I can go to Europe in May and do my partner meeting.  And June/July I can slip away for a bit and take a vacation into Chemo Country and then visit the touristy attractions called dealing with Splenomegaly and the famous painting called Bone Marrow Transplant. And then when it all turns out good I’ll be back to being an asshole to all of you in 2016.

$9,700

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.

Signing up to be a donor

Seems pretty easy.

Cancelled

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...

Match making

So it was like a month from our last visit to this visit at Seattle Cancer Care.  For some reason Lisa and I were excited about this visit as for no reason we thought we'd get a definitive "this is what we are going to do" or something like that.
I go in and get a needle in my arm.  They extract 5 things of blood.  4 to test my levels of stuff, and one honker to do some gene matching with for the marrow transfusion. 
We end up with Dr. Becker again and start chatting.  My blood cell counts have improved over the last month.  Good news for sure, as it means we have more time to find the right donor, and or do the clinical trial thing. 
I ask her how many patients she has with what I have, Primary Myleofibrosis.  "Well, I have one that has what you have.  I used to have 4 others."  Oh did they get cured?  "No they died."
So for me, I want to get this whole thing rolling.  I WANT to finish this selling season with work, do my Baldface trip, go to the Launch with the kids and then get this nastiness going.  My thought and pitch to Dr. Becker was that I'm healthy right now, don't really have the symptoms of bone pain, fatigue, night sweats, hunger loss and other stuff.  I just got a label of having the disease and an enlarged spleen that keeps me from doing anything risky.  So let's get this ball moving while I feel good, am strong and make this miserable year go by.  Lisa and her aren't really buying into my philosophy, but we'll know more in a month.  As that's our next appointment and when we get the results of the gene mapping for matches for a transplant.