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.