Friday, June 23, 2017

20 months post transplant update, welcome to Steriods

I can tell you the days of blood tests, hospitals and worry are long gone from my life like they were a short 2 years ago when we were getting going with my transplant process.  And I finally know what it means when we were reading up on transplants and life after, what they meant when saying "you'll be getting to know the NEW you."

Back in February I finally tapered off of Tacrolimus, which is the immune-suppressant used to allow my new immune system to figure out how to work with my body and not kill me.  I was highly immune suppressed at first, which made me very susceptible to the potential of sickness.  I've had two colds so far and my new immune system has handled them like the champ it should be, seeing how it came out of a 20 year old.  But since getting off Tacro, I noticed that I was having a hard time opening bottles, and my hands were always sore but never really thought much of it.  Then Lisa asked me to do this online yoga stretching with her at home and I couldn't bend my wrists in order to do a push up, or any of the stretches for that matter.  My calves and ankles were super tight and my hamstrings felt like they were always worked out and tenderized by a meat grinder.  I told Doc about it and immediately the dream of being off Tacro was over.

Five weeks ago I had the feeling that eventually I'd get on some drugs for the symptoms going on so I started going to physical therapy / chiropractic rehab twice a week to physically work out my stiffness.  They do deep massage, graston techniques and then rehab on the fascia to loosen things up and get you moving in a normal way.  It's been a game changer for me but I knew that it wasn't enough. 

Come to find out, the majority of transplant patients get Acute GVHD.  Meaning they have some sort of ailment that the new immune system creates in the body right after transplant, usually in the first 100 days post transplant.  It can dry your eyes, toughen your skin, do a number on your mouth, and or attack a organ.  I was one of the lucky ones that never got that.  But what I did get was cronic GVHD.  Unlike the cronic that Dr. Dre raps about, cronic GVHD goes after you when you think everything is sailing along just fine.

So before I went thru transplant I talked with TWO people who had both been thru transplants.  That was about the extent on my research into Myelofibrosis besides what my doctors told me.  I didn't want to read in a Google MD page that I was going to die in 3.5 years like they say everyone will.  So with the two dudes I talked too, both told me that when (WHEN) I get on the steroid Prednisone, that I would be mental.  One dude would get so emotional that he would cry over his bagel and cream cheese.  The other said that he was just a fucking asshole.  Unbearable to deal with from his wife's perspective.  Neither of this sat well with me and to be honest its one of the things that I've been dreading since I heard about it.

Talking to my GVHD doctor about my concerns, we decided I'd be a good candidate for a clinical trial where I use less Prednisone than would be typically given as well as be 1 of 186 people in the world involved in a test on a new drug for GVHD.   Normal dosage for Acute GVHD with Prednisone is 2mg per kilo of weight, which would have me at 190 mg of Prednisone.  For chronic GVHD it's 1mg, putting me at 95 mg, but with my concerns and the clinical trial I'm on 70mg along with the study drug.  

So far, so good.  I have nothing but great things to say for my improvement in a week on the roids.  Swelling in my right ankle is close to gone, I don't ache when I get up in the morning like normal, it takes me a little longer to get to sleep but that's easy, and because I worked myself up into a frenzy about this shit before hand, I'm making sure I'm at the gym daily doing some sort of physical therapy exercises, stretching, lifting and cardio as well as still going to physical therapy.  I also have post-it's placed in the car and on my computer reminding me I'm on drugs and to not be an asshole.

One of the two dudes I first talked to about going thru a transplant a couple of years ago is at the physical therapy place I go too.  He's working out issues in his shoulder.  I told him what I was going thru and he shrugged it off like it was nothing.  "This is what we do now.  Its no big deal.  GVHD will come and go, and its our job to catch it, fix it and move on. "  This was really refreshing to hear and reminds me of what I DID READ about life after transplant.  That you'll spend the next two + years after transplant adjusting to the new you.  And honestly, that's not really a change from life before transplant.  I've always been adjusting to the new me with every injury, hang over, surgery or ailment. And chances are, so have you.

Again, if you found this page, I continue to write in it as a reminder to myself of this cancer trip because at 20 months post transplant there is so much we've gone thru that I tend to forget.  It's kinda rad to read back at the progression of a getting better and how fast it is on paper vs. actually going thru it.  I also write this as a resource for someone like me two years ago.  An honest account and play by play of going thru something totally shitty and coming out the other side pretty fucking awesome and lucky.  Lucky in the sense that we caught what I had early and we had the opportunity to treat it.

In the past two months we've lost two friends who battled cancer.  One guy didn't catch his in time.  He was waiting for his insurance to kick in before he got looked at for loosing close to 60 pounds and when he did get checked out, he had stage 4 pancreatic cancer.  I got to reconnect with him 4 weeks to the day he died and have lunch.  I was very sobering that he admitted that he was the reason he was going to die.  That he didn't get checked out for fear of a hospital bill and what was potentially going to be told to him.  Our other buddy died after a 5 year battle with a brain tumor.  He went out like the champ he was.  Fought it to the end, did everything the hospitals, his wife and kids asked of him and stayed humble, funny, and positive.  One of the few beers I've had over the last 2 years was with him on the last day I saw him and I can still taste it.    R.I.P. Jason Locking and Nick Larson.

Its June and we're still hiking for the snow.  The goal is 12 months on snow this year.  Every month get at least one day on snow.  June was month 8 for me.  We had to hike a bit for it, but it was my fathers day present. 
 My boats still in the warehouse, but I've been getting on others and surfing is one of the best things for my GVHD.  It does a full Physical Therapy workout in 10 minutes. 
 Cooking for the work crew using smoke.  Probably really good thing for someone who had cancer. 
 Back to back Euro trips in April and May.  Always fun with my partners and friends.
 We've got two high schoolers now, freshman and seniors. 
A care givers job is never done.  Even though she's got less on her plate with my shit, she still deals with my stuff on a day to day basis.  Like a champ. 

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