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. 

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."

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.

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.  

HELLO

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. 

Dr. Li

So we made an appointment with Dr. Henry Li, a dude that specializes in blood cancers and a graduate of Stanford and Harvard.  Lisa and I are looking at each other on the drive in thinking to ourselves "WTF is going on?"  Doc did blood work, asked a bunch of questions on my health, how I was feeling, energy levels, loss of appetite, bone pain, sudden weight loss, all that shit.  None of it applied to me except the weight loss.  But after we told him that I work out, dropped gluten from most of our diet, and cut back on booze, combo'd with my age, Doc said that things sounded fine.  The problem was that I was low on my red blood cell count and my cells were irregularly shaped.  Lisa ratted me out to him, telling him how much Ibuprofen I like to consume on a daily level.  Armed with this info, Dr. said I had a hole in my stomach and was trickling blood out of it.  Dude pulled my Ibuprofen card and put me on an acid blocker to stop the bleeding, as well as told me to take iron pills.  He wanted to see me in a month or two to redo some blood work and when we walked out of the doctors office, we felt like we dodged a bullet.