Sunday, December 27, 2015

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.

Monday, December 21, 2015

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. 

Monday, December 14, 2015

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.

Tuesday, December 8, 2015

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.

 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.

Sunday, November 29, 2015

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.

Friday, November 20, 2015

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. 

Wednesday, November 11, 2015

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. 

Tuesday, November 3, 2015

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. 

Monday, October 26, 2015


Well sort of.  I got out of the pen at 4:30PM, after serving 29 hard days of butt burning, mouth sores and a plethora of drugs.  My Neutrophil count was supposed to be in the 500 range so I can have a chance of fighting off infections.  Mine was around 330, but it was time to go.  Doc was sure my counts would spike any day.
Once we got home I had some serious work to do.  I had to build my pill case, and this is the assortment of meds they got me on right now, along with two daily shots and 3 home infusions.  It took over an hour to figure out what I had to take when.  Brutal.
Saturday morning we got up and off the SCCA we went for our DAILY blood draw and meeting with the team.  On top of that I got some platelets.  That took a good 4 hours of the day.  My Doc warned me of being on the outside.  "In the hospital you are pretty sedate for most of the day and when you walk, your walking on flat surfaces.   You will get extremely tired quickly back in the real world, so watch out."  Whatever dude, I was walking 2-3 miles a day, I'll be fine.  From the hospital we went to Milo's soccer game where all the kids were unusually friendly to seeing me on the sidelines.  Then after the game the whole team bowed at us and thanked us for coming.  No idea what that meant until Milo said in the car ride home:  "Dad did you notice we were all wearing pink socks?"  Yea?  "Well coach heard that you may be at the game so he went out and spent over a $100 on pink socks in honor of you."  Wow, didn't think I'd get emotional on a ride home from a soccer game, but I was floored.

This guy was a little aloof to me at first.  I guess my pussy was playing hard to get.
From the soccer game we went to Macs playoff football game.  It was later in the day and I had a sweatshirt, down coat and a down blanket on but shook like crazy from the cold.  Ended up going up to the truck and watched from a distance.  When we got home, I could barely get out the truck and felt like someone whacked me with a bat a dozen times. 
Sunday we got up and had to be at SCCA at 9AM for a blood draw, then to meet with the team and then to get platelets and blood.  7 hours later I walked out of Seattle Cancer Care Alliance feeling like I put in a full day of work.  As I was worked. 

Luckily when I got home, there was an issue of Snowboard Colorado waiting for me.  I flipped thru and found this.  I felt like I had just pushed the Morphine button a couple times.
Monday we were back at SCCA at 8:15AM, did blood work and met with Yellow Team to update them on whats going on with me since going home.  "Well my back looks like someone blasted me with a shotgun doc."  This may be the beginning stages of GVHD or not, so they gave me some topical steroids to put on to relieve the burning and itching.  Next up on the list was the fact that my last three bowel movements looked like I was pissing out a Cabernet wine.  Blood in the piss I got.  It may be an infection (ya think?) or it may be a reaction to you taking pill form drugs now.  We'll keep our eye on that too.  They increased some meds, pulled away others an said that my Neutrophils were in the 700+ range.  Real good. 

This lady was the key to keeping the family from going crazy during the hospital stay.  3 weeks she gave us.  Unreal. 
Funny that since I got out, people assume this shit show is over.  "I got extra tickets to the Sounders, want to go?"  "Hey man, lets go out to lunch, I'll buy."  I wish, but being out means that I get to sleep at home.  I'm under the strict supervision of the team on getting thru this next stage.  What would get accomplished in the hospital from 6AM til 1AM now has to happen during the day.  But I'm not not complaining in the least.  I'm in the comfort of my home, Lisa's on point with what needs to happen with me, the kids are finally realizing that "wow, Dads kinda fucked up" and helping any way they can, and this is a million times better to being in the pen.  It's good to be free.  Kinda.

Wednesday, October 21, 2015

Friday the 23rd!

It's been a bit since and update.  So instead of a book, here's the Cliff Notes version.  Had birthday last Thursday while deep into the Mucusitus.  At this point my lower lip had a full blister on it that had popped the day before.  The skin flap was still on and the Dr.s said let it be, so it can fall off by itself.  My 12 year old son Mac came in to visit me and was horrified how disfigured I was.  He was pretty traumatized over the visit for sure.
Saturday night I wake up around 2AM because something was tickling the back of my throat.  It felt like I had a goldfish in my mouth and I was holding it's head in my teeth and the tail was going back and forth hitting the back of my mouth.  But the tail was half of my lower lip that peeled away and was running rouge in the back of my throat.  I hit the morphine button a couple of times, grabbed the spit suction device and gnawed the rest of that fucker from my lip.  Then realized that my new lip was raw as shit and I was completely fucked.  Another press of the button and some how my lip toughed up and acclimated to being on its own.  I'm starting to believe there could be a God.
Sunday was a good day, up until the night time when this shit decided to go mouth to ass on me and I was back on the toilet pissing out of my butt.  Nothing solid, it just sounded like I was dumping a bucket of water into the toilet.
Monday this bloomed into me waking up at 8AM and going into the bathroom over 28 times that day.  I went thru two packs of industrial wet wipes.  Doctors thought I may have an infection called C-Diff which is something that is commonly found in hospitals because everyone is on antibiotics.  Anyone that came into my room had to robe and glove up while in the room, then scrub themselves so it doesn't get passed along.  This carried into Tuesday night when they said I didn't have it and they were able to get me on some Imodium to fix the leak in my damn.  Things instantly slowed down and I started feeling good, but as always, it was too good to be true.  I finished the last of my pills, had a sense of accomplishment for doing it and started to recline my bed when I got a tap on my shoulder.  I sat up, looked around the room and saw the bucket.  As I got up and was rushing too it, out it came, this time from my mouth.  I got the bucket in time but it was filled with all types of hospital goods and ended up puking all over it.
But TODAY, is the best day of my 26 day stay so far, because all that crap is behind me.  My white blood cell count doubled from yesterdays numbers and my Neutrophil count grew five fold.  Which means things are happening and I'm on the come up.  Because of this, my mouth and ass both feel soothed and comfortable.  I'm off the narcotics, and have been trying to finally get some very basic food down my gullet.  Lisa and I had a clinic from discharge services today as well as a class on how to use home infusion and work the pumps, lines and stuff that we will use to inject in me at home vs. sitting for hours on end at Seattle Cancer Care Alliance.  We are planning on getting the hell out of here on Friday, 4 weeks from when I arrived here.  To say that today was the best day of my stay here so far is an understatement.

I can't wait to get home and get this back in my life.  4 weeks away from your wife and kids lives, is way too long.
 Butt I got to stay away from this.  No poo poo picking up for me.  Dr.s orders hon.

I'm cleared for mellow head rubs though.  Gotta wash my hands right after, but I can get back to beating the crap out of these two.  Tell me you don't want to torture this guy?
Speaking of torture, my God damn neighbor Pat just fully fucked me.  This tree in the front yard is my nemesis.  I trim it, it grows like someones fertilizing it.  I always end up climbing this thing, with the gas hedge trimmer, swinging from left to right over my head in attempt to get it under control.   Pat and Jenn across the street always come out to watch the show.  They want to see if I cut a power cord, a finger off or fall out of the tree.  But noooooo, not this year.  Pat knew this would be first on my to do list of things I'm not allowed to do so he rolled over and tamed the beast.  Neighbors of the year, yup.
I'm going home, but not out of the woods.  Got plenty more hills to climb, plenty more issues to deal with, and lots of time gonna be spent with my team and Seattle Cancer Care, but to know that I'm 30% done with this "journey," it feels pretty good. 

Thursday, October 15, 2015

Happy 49th?

I certainly hope so.  Seeing how for my 48th year in this world I spent 26 weeks being hurt, over 60 visits to the doctors office, 12 weeks in Occupational Therapy, 30 days sleeping at the hospital, broke 4 ribs, scapula, elbow that required 6 screws and a plate, got a 12 pound spleen removed, 6 days of chemo, one stem cell transplant, one hemorrhoid and the worst part...only one day of riding pow. Not expecting an exciting 49th year, just one a tad better than the 48th. 

It's pretty sad that these are my most commented media, EVER.
My Mucusitus is pretty raging right now.  Still can't swallow, drink or eat and I'm still using a topical numbing lotion on my gums and butt.  I feel like that Blink 182 album cover twice a day as I yank up that rubber glove to massage cream on the button.  Who would of thought...
Now the good news.  My white blood cell count has shown improvement over the last 3 days and today, my neutrophils finally registered.  Doc says if things keep improving the way their going now, I may see my own bed at the end of the week.  Meaning my counts need to continue to rise, my mouth needs to get under control, I need to be able to eat, drink and take pills orally, as well as other things.  Still, pretty stoked to hear that.
The nurses here all signed me a card and came into the room to sing me happy birthday.  Thank you guys for all the birthday wishes on FB, IG, IM, and email. Not the raddest birthday by any means, but it kinda goes with how 48 went.

I figured I need to change some shit up in my life to ensure 49 was better that 48.  So I started off by unfollowing people I could give two shits about.  Shaun, Leah from Married To the Mob and Bozung all got the cut today.
 I was restricted to my side of the building today, so this is what 45 minutes of walking around my floor looks like.
 I have been DILIGENT with my mouth care.  Rinsing with saline solution 10X a day, using Lidocaine on my gums every 30 minutes, sucking out all mucus with a suction pump and using Lanolin on my lips to protect them.  And this is how they pay me back.  That's my lower lip completely peeled away from, my lower lip.  Happy fucking birthday.

Tuesday, October 13, 2015

The good times are killing me

Day 19 in this joint and day 10 post transplant.  When I got here I pulled out the calender and told the Doc that I like to know the ending of movie before I watch it, so tell me when the shit days are gonna be.  "October 4th - 14th your gonna be deep in it."  And the countdown was on.
Friday the 9th hit and the Mucasitis was only in my butt hole.  Then Saturday my inside of my mouth started to turn white. Taking my 15 pills in the morning was taking me almost 2 hours to choke down.  Eating was fucked.  Pudding and Jello were not my friends.
Sunday proved that it was not a "fun day." But Monday was a game changer.  They pulled me off food, and now I have a bag of nutrition dripping into me.  All my pills go in thru a drip.  They gave me a mouth numbing cream similar to the Bob's Butt Numbing Creme that I have been using to put of the flames on my ring of fire.  We hooked up one of those dentist spit suction devices so when my mouths full of thick mucus flem, I can just suck it out.  Sleeping pills only come in a pill form, so they hit me with 50mg of Benadryl and it was lights out.  And the special reach around of all this goodness was a morphine drip.  Every 6 minutes I'm allowed to press the button and give myself 1mg of morphine.   That would be 10 an hour, if I so chose too.  Excuse me, I need to push a button.  On top of all of that, the little hair I do have is falling out.  I go take a leak and look down, it reminds me of when I was 12.  I scratch my head, there's a smooth shiny spot amongst the stubble. 
But the cherry on top to all of this, was Leslie agreed to stay out here another week to help the kids, Lisa and myself out with all of this.
Now I know this all reads like every things great, but it sucks right now.  This is the crap time.  I've got lots of band aids for wounds that need stitches.  But so far it's keeping it all together.
Happy birthdays to two awesome humans, Benny and Emmet.  For your presents, I'm gonna push the button 10 times this hour.  Your welcome.

WeGnar, mid win whats up Facetime this Saturday.
For the first time I got stopped on my route last night.  "John, you're not allowed to leave the floor."  We'll see about that.
See all that whiteness?  That's not cocaine, that's pain.
My Wizard Stick is growing.
This is what I'm eating these days.
Say hello to my friend Morty.
Spit suction receptor thing.  Gonna save it as a souvenir. 
Mouth rinse, mouth numbing and lip protection every 30 minutes or so.