120 days post transplant

There are days we wake up and Lisa looks over and says to me "can you believe we went thru that crap?"  And I shake my head and go "yea right?"  Especially cause I'm feeling pretty back to normal these days.  Besides the fact that I still have to go to SCCA once a week for blood work and Dr.s meeting, take some 30 odd pills a day, shed skin cells like someone with their first sun burn, itch constantly, look like a refuge from Ethiopia, have to eat 3,000+ calories a day when I remember too, stay away from groups of people because people are filthy, walk around with legs and cankles filled with fluid and am still for the most part a hairless 12 year old when naked.  Other than that...I'm feeling great!  I'm back snowboarding, following the kids around the hill and getting my mind blown on how good they and their friends have gotten.  I've gotten almost a dozen days on hill since I self prescribed myself the chairlift 3 weekends ago and actually gotten to ride powder 3 times now.  This is my fifth week at work full time, and that too is pretty damn satisfying.  Last week was our yearly big tradeshow and we decided that flying and being around that many people was a risk too big and the reward wasn't that much so my boss Gumby figured out another way for me to be present and participate.  I spent 18 hours on Facetime Thursday and Friday talking to customers and industry folks thru an I-Pad mounted on a mannequin.  It was a trade show hit from what I was told, and more importantly sent the message that even though you may be down, you're not out.  

 Macs been riding like a little man these days.  Super fun to see him step his game up.

 Saturday 11" waited for us and Milo and I got back to sneaking into our favorite runs.

This was how I looked at the tradeshow.  Max Headroom. 

 I told my buddy Ben that I would be at the trade show and to come by and see me.  He did, then called me a Motherf*cker.

 It was good to talk to my old boss Keith Leifer.  Dude has hit me up every year on my birthday since I stopped working for him in 1996.

 Mellow conversation going on.

On Saturday we answered some Facetime calls from the convention center on the chairlift. 

 People were kinda pumped for me, but then after I told them we were floating on 11", I got the finger.

 Mac, Owen and Wyatt straight up winning.

BOOYA!

Day 100 is today!  We made it out of the Transplant Team alive.

Last week was pretty all time if I do say myself.  Monday was normal blood work and Wednesday we had our exit meeting with Dr. Storb.  Doc rolls into the meeting room and looks at us saying "how you doing?"  KILLER!  Can't wait for all these rave reviews during this exit meeting Doc!  To which he was very stoic, like he had some not so good news for us.   But after rolling thru my results in which I passed everything with flying colors, including my lung capacity being larger than when I started ("Wow, never really seen that result before!) he said that I'll be tapering off most of my drugs over the next couple of months on most, and on some up to a year.  The only drug I'll be on for life is penicillin because of the lack of a spleen.  He then warned me to be religious with my use of SPF 30 anytime I'm in the sun as a sun burn can kick in GVHD anytime down the road.   He seemed ok with me going to the cabin, as the Long Term Follow Up people said it was cool, but suggested I not "bored" until a month or so down the road. 

Friday was the final step to being released where I had my Hickman Line literally yanked out of my chest.  Man did that feel good.  Seeing how that line goes in me a good 6 inches or so and is held in place by a little o-ring that bonds with my skin.  And now that o-ring is stuck in me and makes a squeak when pressed like a dog toy.  Just another foreign object in me at this point.  Screws, immune system, o-rings and chicken bones, but that's another story.  Shit happened in college, so it doesn't really count.

Now I only have my weekly check in's / blood work with Dr. Becker, my original oncologist.  It's time to put some weight on this frail body of mine, join the gym, get back to the cabin and on the hill when the Doc says it's ok.   Hopefully the hair comes back too.  Arm pit, beard, chest and nutz are all a little cold these days.  I feel like one of them hairless cats.

Too late, I'm back!  It felt incredible to ride the lift and follow the boys down the hill too.  First couple of runs were with Milo and Kimo, Keala's dad.  Then we hooked up with the Cline clan, to which Owen was the only one of all kids running a "I slash with Nosedradamous" sticker.  I asked Milo why he didn't have one?  "Why?" was his response.  Then Wyatt the other Cline kid see's me and throws out a sincere "It's good to see you back on the hill Johan."  I don't know if those kids were coached into that, but it sure felt good.  Kimo's wife and other son Levi showed up and my last two runs were following a train of kids destroying every feature in the park.  It was awesome.
After 6 runs I figured I better go check in with Lisa so she wouldn't worry.  She wasn't all for me going up on the hill yet, but supported my lack of better judgement in doing so.  After a little rest and lunch, Milo grabs me and says "lets get back at it."  As I stand up to follow him out, the long arm of the Lisa put a screeching halt to that notion and it was time to pull the cards out and play a couple of games of Gin Rummy. 

Walking thru the tunnel

Last week I saw the light at the end of the tunnel and now I'm walking thru it.  

Monday met with the "team" and discussed me leaving them by the end of this up coming week.  We had to get my magnesium levels up so I could get off of the home infusions I've been doing since leaving the hospital.  Lisa and I brought up the confusion we were having with not being more than 30 minutes from the hospital, that was keeping me from the hill and cabin.  Doctor Storb said that he understood and then proceeded to talk around when I could get the hell out of Seattle and go to our happy place.  But it seemed like he was hinting that the middle of January would be a good time to venture up there safely.  I also asked when I could get back on the booze wagon.  Not boozing boozing, but the ole have a beer or three with friends during social gatherings and it looks like I'm riding the sober train until the end of March on this one. 
During the rest of the week I went appointment to appointment so they could run me thru almost all of the tests that I did during the 3 week prep leading up to me entering the hospital on September 25th to make sure I could live thru the transplant.
We did a bone density test, to see how jacked the drugs made my bones.  Did I get osteoporosis from the meds?  Nope, clear for take off there.
There was a pulmonary test, which my intake was 10% better than before I took this "journey."  The tech said that it was because I was as light as I am and my chest could expand more than when I weighed more.  Another good result.
The dentist was up next and the first question they asked me was how often I flossed my teeth.  Twice!  "Twice a day, that's great!"  No, twice a year.  I get two teeth cleanings a year and each time the hygienist flosses my teeth.  It's against my religion to floss Doc.
My results came back from the bone marrow aspirate.  I've taken over the Germans blood type of O- and lost my blood type of B+, but still retain my platelet type of B.  Apparently they don't kill all of you during the chemo stage and your platelet type is genetically part of you forever.  Also they said that there is no sign of cancer in my marrow.  Seeing how the type of cancer I had is curable, that's a good sign.
I had a ultrasound on my stomach to see whats up with the small blood clot I got after getting my spleen out.  I've had to get two shots a day since July because of this and honestly, it sucks.  Bad.  I hate these shots more than anything I've gone thru besides the spleen coming out.  They burn, sting and I'm a giant pussy about needles.  The results showed no clot present and boom, no more shots for me.
The best appointment I had was a Long Term Follow Up (LTFU) departure class about what we can and should do once we leave the transplant team and go back to where ever the hell we're from and get in the care of our normal cancer docs.  Lisa and I stayed after class to ask specific questions about me and what I can and shouldn't do.  THIS was the home run meeting we've been waiting for:
Yes, I can go to the cabin once released from the transplant team.  My immune system is still delicate and growing but I will show signs of an infection or sickness before going septic and the Monroe hospital being 45 minutes away is close enough for me to stay alive.  Just tell them I'm a transplant patient and call the SCCA and they'll tell them the drugs to administer to me to keep me going should something go down.
My platelet count is high enough that I can snowboard with out bruising.  Whether my energy and fitness level will allow it is another story.  But I'm betting that this skinny fuck could muster out a couple of runs.
The gym is a go.  Bring some clean wipes, wipe down everything I touch and go when no ones there.
Air travel?   You betcha.  Not for vacation but if I have to go from point A to B, I can.  Bring those clean wipes again, my own drink and food and let it rip.  I should wear a face mask too, not for protection but to keep people away from me.
Sporting goods event are a go as well.  As long as we're rooting for a shitty, loosing team and no ones in the stadium.
This week I have my good bye meeting with the yellow transplant team and then Friday I get the Hickman line removed that goes directly into me.  This is the final straw in me walking thru the tunnel into the the light and getting a well needed tan. Not the chemo tan I'm sporting now.
Bring on next week!

I walked around the waterfront by SCCA in between appointments last week and figured that this would be a pretty good boat to move into with Lisa, once the kids were out of the house that we're gonna sell as soon as their gone.  But upon further internet investigation, the 2.3million price tag is probably gonna keep us land locked.

Gnar and Milo took off from Seattle all week since they were on vacation and we couldn't be at the cabin.  Dr.s orders.  The Clines took over the parenting duties for the week, while Gnar took over the "we wish you were here Dad" text and photo's.

The older dudes at Stevens took Milo under their wing and brought him out in the side county to build jumps and jump off cliffs.  This one's kinda large seeing how he's landing out of the frame.

 Classic Tontini's. 

My first sober New Years in 29 years with these dudes.  One of the more memorable ones in a long time.

Our French friends the Soultrains have been great with the boys, jumping in and getting them to and from the mountain like the Clines have.  Natache sent us this shot of the boys coming back from an event in Wenatchee.  It must be a French thing that Milo's doing, as we've never taught him that.

It must be the BMX in me, cause I jumped the gate yesterday and went up to the cabin to clean up from the week that the Clines and the boys spent there.  Good thing we drove all the way up and back so we could walk into a spotless cabin.  Thanks again for being great humans Jason and Kim, as well as taking great care of our land yacht.

Weak Neun!

That's German for NINE!  Another one in the books and things pretty much keep getting better.  Cept for the fact that it's snowing buckets up at the hill and I'm actually paying attention to what Gail my PA said on Monday, which is staying close to the hospital.  But of course I am gonna ask Dr. Storb what his take on this whole situation is, because common sense would tell ME that being stuck in Seattle until March doesn't make sense.
 

 "Hey Dad it's sick out here, I wish you could come with us so we had someone to film."

The way I figure it is, transplant patients from out of town need to stay close to the SCCA for a 100 days because of risk of infection.  Then after that, they usually go back to where ever they are from.  I met people from MT, ID, OR, AK, HI and other bum fuck locations that all had a transplant done and usually before the 100 days they were out of Seattle and back home doing whatever it is that they do.  Again, my common sense would say, what's so bad about me venturing another 30 min out of the way if these people are hours away by plane?  So Monday we ask Dr. Storb what he thinks.  And then I shut my trap and do as told.

Fentanyl and I have a good time.  They took bone marrow out of me and did a chimera test.  Which is to see how German I've become over the last 83 days since transplant.

Health wise I'm feeling the best I have except for this feeling of chalkiness all over my skin.  It likes to show it's head right around the time I'm supposed to go to sleep in the form of itching and dry dustiness on my skin.  Weird to explain but it's another pain in the ass with this whole thing.  I kinda got a feeling that this is a small sampling of GVHD, but I could be and hope I am wrong.  The bone marrow sampling went fine, no problems or pain there.  In and on Fentanyl and out of there with the help of Lisa, while telling her to hand me the keys to drive home while I stumbled into a wall.  I've noticed that I keep getting stuck on words in my head.  I was talking to Dr. Storb about this resort outside the snowboard factory in Austria and could not for the life of me say the resorts name.  I knew it in my head, but couldn't get it out.  They said that THIS is another side effect of the Tacrolimus that I'm on.  And lastly, I've been going black a bunch lately when I stand up too quickly.  Lights go off in the old eyeballs for about 5 seconds and I move back and forth like a bouy in the ocean.  But really, I AM feeling the best I have.  Cept for the above shit.

 Pretty right on for this one.

Happy New Year to all, especially me because 2016 is gonna be a good one.  I can feel it.  Suck a dick 2015, you're outta here.

Earned love right here.

Eddie Spaghetti texted me as he was coming in town for his first show since getting half his throat got ripped out from cancer.  He did a bunch of radiation and the cut they shit out of his pallet.  Now he's cranking, voice sounds better than ever and 5 months later was playing at the Kiss Cafe.  I wanted to go but it was too Tom Cruise for me (Risky Business).  So he came by and we swapped how much going thru things sucked and ended up laughing bout the whole thing.  As he was leaving he reached into that leather and said "oh yea, here's why I came by.  Here's the new cd, hope you enjoy it."  Buy it here, song 6 rules.

 Gnar stealing my thunder with Rocky.

 Gnar hooked me up with a tight ass shave for Christmas.   He even trimmed up the mexi-stash.

 Waiting for the rest of my hair to come back so I can grow another sweet one like this.

 Shrapnel.

Week Ate

We rolled into our Clinic visit last Monday and got called a "rock star" by Gail.  "Your platelet counts are growing and instead of you coming in here 3 times a week, your on the twice a week program, Monday and Thursday!"  Sweet I thought, cabin time here we come!  We breezed thru the visit as the itching, burning and rest of the shit I have been going thru has taken care of itself once they started the taper on the anti GVHD drug.  Then we got our schedule for the next two weeks of clinic visits and they had us going 4X a week.  WTF?  I asked Lisa to go rearrange stuff as I'd just get frustrated with them saying no and she'd honey them vs. my vinegar approach and hopefully get things lined up which sorta happened.
I had clinic today.  Tomorrow their drilling into my hip again and pulling a bone marrow core sample from me to see how much of the German is now me.  Thursday is back to clinic and Friday is Christmas.  Kinda fucks this week up for being at the cabin but at least I'll be there for Christmas, so I thought.
Then reality slapped me upside the head once today's clinic happened.  My PA Gail came in at the beginning and sat down, and I could tell it was gonna be serious.  She said she knew I was going up to the cabin and then got a little emotional with the delivery of the rest of the conversation.  "Your immune system isn't working yet John.  You have been very lucky so far going up there, but trust me, your luck WILL run out.  When your immune system isn't fully functioning you won't show symptoms of being sick or if you have an infection.  Your body will go septic (organs shutting down) and with how far away from the clinic you are, by the time you come in, it will be too late.  We see it all the time and we've put way too much work into you to have this happen.   It WILL happen.  Trust me."  Uh...ok.  Now I feel like a dick.
Then she left and the nurse I had in the room, who is also a discharge nurse in Transplant / Transplant ICU said to me "listen you got out of the hospital a while ago and I can tell you that you do not want to be admitted back to the hospital under those circumstances because most of the time you don't get discharged.  I see it all the time."  Double dick now.
So when CAN I go to the cabin?  You dudes are releasing me from your care in 20 days, is that all I'm waiting?  20 days from now things will be cool?  Nope, I will be cool when I'm off the immune suppressant drug that keeps fucking with me and keeping me alive.  And I'll get off of that at the beginning of March.  Sweet.
On top of all of this, Gail said to me after the needed tongue lashing that I should write a blog about my experiences with cancer as I seem to "get it" way more than most of her patients.  Yea...
Merry fucking Christmas, from Seattle that is, from the Rock Star.

This will be my last memory from the cabin for a while, Schaffer (part Asian) grabbing whiskey out of the cabinet with a very Seattle like bumper sticker that was probably made out east.

 Bro-In-Law Stevie and Baked Bean Becky sent out Christmas's favorite most looked forward gift, Linguicia.

 And Milo got another ad with Bern helmets in a Orange County California magazine. 

Week 7, the itchathon continues

So I knew I recognized the name of my new Doctor, Rainer Storb.  When I was in the hospital one of the Physician Assistants was giving me the history of bone / stem cell transplants.  These transplants were invented in by a Seattle Fred Hutch / SCCA Doctor named E. Donnall Thomas.  There was a statue in the hall way of him, as well as various pictures and plaques because he received a Nobel Peace Prize for his work.  Then the PA started talking about the dude that took what E. Donnall had done and helped shape what transplants are today.  This dude he was talking about is a man who lives on Mercer Island, is 80 years old and rows his rowing shells from Mercer Island all the way into Lake Union to SCCA, every day.  4.5 miles this row is.   This Dr. made the rule that the maximum age for a transplant was his age plus 5 years, as if he ever needed a transplant,then he could get one.  And this guys name is Dr. Rainer Storb.  
A nurse reminded me of this man while I was getting a bandage changed.  When I heard her say that he was one of the most important men in transplants, I was like HOLY SHIT this is my new doctor.  He now does research on getting rid of GVHD 10 months a year and only deals with patients 2 months a year.  THIS is my lucky month.  I'm kinda fanning out on this him and can't wait to have my get together with him tomorrow.  As well as meet with my nutritionist and hopefully weigh in the mid 160's.  
Last week was killer.  My platelets are now 79,000 down from the 124,000 the were on the first of the month.  These fuckers have held strong for 13 days now.  No platelet transfusions since Dec 1st.  And I only had one blood transfusion last week, which was the first one in 10 days.   They also cut me down to 3 visits a week to get blood work instead of the normal 7 days a week that I've been doing.  Monday, Wednesday and Saturday are my visit days.  I'll most likely do two weeks of this routine before going to twice a week and then I'll get handed over to my Oncologist.  Tomorrow I'm gonna ask about going back in the office twice a week for a couple of hours each day.
The only shit I've got going on right now is the constant itching.  Two nights ago I stayed up the whole God damn night itching.  7AM awake and scratching myself like a crack head.  Real impressive.  THIS is gonna make me go crazy.  

Looking less like a crack head, even though I'm scratching myself like one. 

Lil guy won a pretty big event this weekend in Bend.  Super pumped for him.  Older bro did pretty damn good himself.

Week 6, the light at the end of the tunnel

Last week was the best one yet, for the most part.  I got a red blood cell transfusion on Monday, my first in 9-10 days and I usually get one or two a week.  So that was good that these transfusions are stretching out because they take 4-5 hours to do. 
Then my platelet count broke the 90,000 barrier where I had been stuck and hit 124,000.  I don't know what the hell 124,000 means except for the fact that I know that my threshold is 70,000.  When I hit 70,000 or below it's transfusion time.  You reading this, your platelet count is somewhere in the 10,000 range.  They keep me so HIGH because of the blood thinners I'm on.  Anyway I usually loose about 30-40,000 platelets a night so that's why I get the platelet transfusion 6-7 times a week. 
Last week I was stoked cause I only needed 4 transfusions.  Well this week with that 124,000 all time high, it held for the most part all week.  I had platelets on Tuesday and today's Tuesday and I haven't laid down since last Tuesday for platelets.  7 days without an infusion.  My shit was going down 2,000-5,000 a night.  Actually I don't have to go into SCCA today as they gave me the "day off!"
In Monday meeting I met my new Doctor, Rainer Storb.  Transplant Dr.s rotate thru SCCA to the hospital to research every month, so out went mellow cat Dr. George Georges, who was awesome by the way, in came Rainer Storb who I hi 5'd instantly.  We also had or PA (physicians assistant) Christine rotate out and I got back Gail who was my PA in the hospital for my chemo treatments.  We looked at each other and there was a hug right away. 

What a buck fifty four looks like...the walking dead.

 Clinic meeting was good.  My weight at last Mondays meeting was an all time low of 154lbs, which was down 10 pounds in 10 days, and my nutritionist said that if I didn't focus on adding 1,000 calories to my daily intake that they were gonna stick a feeding tube down my nose.  I showed up this week at a blistering 161lbs (with a battery charger, phone and a couple things in my pockets).  Goal for next week is 165lbs, no rocks in the pocket.  It's a eating week.

 161lbs

 Hoping to get back to this next year a svelte two bills and change, beer and all.  I'm 4 months sober and in discussing the future of my sobriety with a 5 year sober friend, he suggested that being sober sucks and I should drink beer again when I'm allowed.  Good advice I thought.

 Cindy my head nurse said that I will probably be with this yellow team another month or so before I get released back to my regular Dr., who is Dr. Becker.  In order to be released to her team, I need to be only going to the clinic once or twice a week maximum, so that's what we are gonna work on the next month.  Cutting my visits down going to the clinic, spreading out my transfusions and starting to get my life back.   I asked when I could stop wearing the official cancer persons outfit of sweatpants, beanie, Patagonia top and slippers.  They didn't understand which blew me away.  "What do you mean, that's the official cancer outfit, we see people in normal clothing all the time."  Like hell you do, follow me into the meeting room, I'll pick out every cancer patient in here based on their outfits.  We laughed and I think it's about time that I put on a pair of jeans for the first time since September 24th, the day before I went into the hospital.
After the Dr.s left, Cindy told us that she was leaving for vacation on Friday, taking a month off and going to Germany with her daughter.  Lisa and I were kinda shocked at first thinking you can't leave us, who will keep us in line, but then realized that the leash is really getting let out a little.  New docs, new nurse, new hospital schedule and a new life.  Cindy said that what we just went thru and are still going thru are the toughest things we'll ever go thru in our life, but it's worth it because if we didn't do it I would be dead in 3-5 years.  Pretty fucking real to hear that.  Buts its true, I don't think that this was the most painful thing I've ever been thru, but it certainly is the longest journey (there I said it, fuck you JOURNEY) we've ever been on.  So many shitty, uncomfortable, mind fucking, things that both Lisa and I had to go thru.  On top of that, you think about what Lisa has had to deal with this whole time.  Not any of the uncomfortableness, pain or medications for the cancer, but having to be my daily driver, food maker, pill reminder, shot giver, clothes cleaner, shower scrubber as well as still doing everything for the kids and trying to keep them as normal as possible.  All while getting really nothing in return.  Because the reality is, it's been all about me.  Selfish as that sounds,  I guess it needs to be that way but I think I rather be the person going thru what I just went thru than do what she has had to do since I broke my stupid ass elbow on May 30th, and that is to care for a grumpy ass old man and two teenage boys that are as active as ours. 
I'm glad 2015 is coming to a close,  cause as a glass is half full type of dude, the only thing I can say about 2015 is fuck you and good riddence.  It will cleary go down as the worst God damn year in my and probably Lisa's life. 

 I got some making up to do in 2016, and I'm looking forward to it.

Week 5

A pretty awesome week in the books.   Still got this itching thing going where I try and scratch my skin off to the bone, but it's not that bad in scheme of things.  During our Monday "team meeting" with my Doctor, PA and Nurse I was advised and told NOT to go to the cabin as I had just confessed to them how awesome it was to go feel normal for 16 hours.  To which they said that 60 minutes away from SCCA is too far.  Eh...I'm kinda not really backing that advice so as a grown man I told them thank you for the advice, but I will be going there, not a lot, but when I feel right and it's right, I'm there..  The risk is worth the reward to me.  And I really don't feel like a 18 hour stint at the cabin is a risk.  Sorry guys, but I follow your rules to a T, but this one's not really lining up.  You'd know if you had a cabin, kids, and the need to be out of the city and be by the mountain.  I also started to exercise this week as well.  Out of the last 7 days, I walked 6 of the days.  Anywhere from a mile to a mile and a half a day. 
This has been tough to fit in but my nutritionist said that I will only start to gain weight when I work my muscles.  So walking was the goal last week, going downstairs to the gym will be the goal this week.  I got a lot of lifting and eating to do to get this 160lb body back to 200lbs.  And lastly, I've been on average going into the Infusion clinic to get platelets and red blood cell transfusions 6+ times a week.   Last week I only had to go 4 times.  I had 3 days off, which was insane.  Hopefully this will lighten up my 7 day a week SCCA schedule and give me a day or two off a week.  We'll see.  Anyway, stoked on last week.  It was very encouraging.

I surrender

Well, I've given in.  4 weeks and 1 day from when I was released from the pen, I finally surrendered to "this is my God damn life for now and there's nothing I can do about it."
I've asked my Doctors for weekends off, just to be at the cabin, take the kids to the hill and hike and been absolutely denied by them.  "Uh, not yet John.  We want blood work out of you every day.  You have things changing in you daily and we need to keep and eye on this."  Ok, fuck it.  I'm gonna just do what they tell me.  You want me to take pills that burn my feet.  Fine.  Do daily shots that make me get daily transfusions, that then make me get reactions of itching so bad that I want to shower in acid?  Cool.   I'm just all in at this point and it feels pretty good to finally surrender and go with the flow.  Now when something actually goes my way I'm not so bitter that I can actually enjoy the moment.
Like today.  I went in at 8:15AM got blood work done, then had an ultrasound on my stomach to see if I have GVHD going on in there and then came home.  We called the nurse to see what time my transfusion was going to be and boom, my platelet count was thru the roof.   No going back for me today.  I took a nap, came down to the office and actually WORKED and then got to go to the Queen Ann pool and watch Milo dive as he's now on O'Dea dive team and swim team.  As I type this now, I'm glowing.  It was an awesome day.  And I'll take more of these please.
I will admit though, that this was a mind fuck week for me.  The grand opening and our annual C3 sales meeting is going down in Austria all week.  The reps, riders and company people have done a great job of keeping me in the loop and feeling included but it's not the same.  Being there for this grand opening of the factory we've worked 15 years for to build is something that will only happen once in my life.  And it would of been pretty sweet to be there to take it all in with everyone that helped bring it to reality.  Anyway, Cheers CAPiTA and C3.  It's been a fun ride to watch this week.  Thanks for including me.

Milo hiking around Stevens last weekend.

 Mac was locked in too.

 The CAPiTA Mothership in all it's glory.  Mmmmmm.

 Gums in all his glory. 

 Finest group of dudes and friends you'd ever want to spend your career with.

 Facetime with Cocard and Dustin telling me they miss me.  This was a nice call. 

 The A-Team.  Jess, Phil, Cocard, Backstrom, Brisse, Craven, Stevens and Blue. 

 Party Marty has no idea that the boys stole his credit card under my orders and charged a nights worth of coctails to it to pay for his drunk ass babble.  Paybacks a bitch buddy. 

3 weeks out of the hospital

I've been home from the hospital for 20 days now and have been back AT the hospital every day but one.  This has been an absolute kick in the teeth with the unexpected.  I’ve been constantly exhausted and dealing with side effects of all the drugs their pumping me full of.  My feet have burnt so bad thru the night that I have to ACE bandage two ice packs to my feet to even begin to fall asleep.  And this is from a medicine that their giving me to keep me from getting the dreaded G.V.H.D.  Then this blood thinner I’m on (2 shots a day) makes me have to go in a get daily transfusions of blood and platelets, to which I get fevers at night and have to go back to the hospital.   But the team won’t change anything up yet as it seems all that I'm taking is needed in the grand scheme of things. 

Rocky keeping a watchful eye over a late night foot bath.

I got to be honest, this is way harder than I thought it was gonna be.  You go thru all the build up about transplant and for the most part it's to get you thru the chemo, transplant and the stay in the hospital.  That shit was cake compared to being home though.  Today I'll be here from 9:30-3ish if all goes on time.  Which it NEVER does.  It’s unrelenting.  Hurry up and wait is the name of the game.  There is no possible way to plan anything because my schedule changes daily as well as while I'm here.  Which can be pretty frustrating.  Anyway…that’s my pity party, and I know it WILL get better, but for now…I don't feel like I'm living, contributing anything to the wife, kids or house, cause I’m just getting thru the days.  I feel like Maverick in Top Gun where I’m in a tailspin and I’m just waiting to hit the eject button.

The good news is that we got a bunch of stuff figured out over the weekend and I can finally walk without being a cripple. 

Home Life

Well I've been home for 10 days now but have been back at SCCA 9 of those days.  It's a full time job doing everything they did for me at home and then getting our asses there on the daily for blood work, meetings, testing, blood and platelets.  My white blood cells have been going thru the roof, which is super encouraging.  Just waiting for the platelets and red blood cells to come back on line which they say takes some time.  Thus the 5 or so transfusions since I've been a free man.
We met with the nutritionist last week and they want me to get 3 litres of fluids in me a day as well as over 2,500 calories with more than 120 grams of protein.  You should have about 56 grams of protein in your diet by comparison.  "Your body's metabolism is like a long distance runners right now.  It's pulling all it's energy right from your muscles and that's why your the skinny pussy you are right now."  167lbs is what I weigh right now.  Fuck me.  I haven't weighed that since 12th grade and my 12th grade self would beat my old ass real bad right now too.  Shit, I think Milo may beat my ass real soon.  I better watch what I say.  My doctors thru me for a tailspin last week too when I was complaining to them about how skinny I was getting.  "Listen, do you know what you just went thru?  What you did was 10X gnarlier than getting a heart or liver transplant.  Doing a heart transplant is like changing a carburetor in your car.  What you did was change the engine, transmission and wiring harness.  Blood is an organ in itself.  Then you throw immune systems in there..."  I had no idea, and glad I didn't going into this.

Today I'm going in so they can pull another bone marrow core sample from my hip.  Should be fun to be reunited with my old buddy Fentinol.