Doom and Gloom revisited

I did a little research about MDS/death.  You know, the themes of my life right now.  Heh, Not pleasant information.  I shouldn’t oughta do that.  At this point the best outcome I can find is 2 years.  But most sites are saying less than 2 years, I’ll be lucky to reach 50.  heck, a this point 49 is a goal.

Teresa explained to me why a 2nd transplant wouldn’t do for me.  And the answer is just sort of simple and if my mind was clear I would’ve thought of it too.

So the long shot hope (20% chance), is this stopping all ammuno-supressor medicine and hoping that the new bone marrow goes in a kicks the ass of the defects.  Like I said it had a 20% chance of success.

This is why I need to go to Thanksgivingfest this year.  I may not be physically able to go to the one next year.  This dying stuff gets in the way.

I already looked some into palliative care (hospice).  I don’t want to go into palliative care, but there just might be a point where we don’t have a choice.  Teresa can’t lift me, and I may very well need lifting.  Even the thought of this I find repulsive.

D&D starts in 3 weeks and a couple days.  Gonna wait til this one in going before even considering starting a second one.  But I have plans and my plans have plans.  It’s all good, just ask me.

Ya know, funny thing, after the AML in 2015, I thought I had 30 or 40 years to go.  I went thru a lot of crap for that.  Then the MDS in 2017-2018 hits, puts a definite scare in me.  I listen to the doctor, he makes me feel comfortable, that everything is gonna be all right.  Should have went with my first feeling, then at least I would have 5 years, instead if wasting 1 year and getting 2 maybe.  I had a bad feeling about this from day -11.

There have been plenty of times in my life where I wanted to die.  Now that it is semi-immanent I DON’T WANT TO DIE.

No reason, just better mood

Mood is a little bit up for no reason that I can think of.   Not jumping around having a party, but not on the verge of tears and pondering what’s next either.  Feeling pretty good if you ask me.  Just don’t ask me about the future and I think I’ll be good today.

Speaking of the future, on Monday I meet with a new Therapist, is she in for a lot that she isn’t expecting.  I’m gonna try to be a man and not ball in front of her. But since I will be paying her for an hour to listen to me, there is a good chance that I will ball.

She will be the first person I have spoken to about all this face to face.  And she doesn’t know me from any stranger who walks in off the street.  This should be fun.

I had zero therapy while I was at Mayo.  If I had some, I would be making an appointment to see them on next Friday.  I had asked for monthly therapy and got ZERO therapy.   Works for me, I guess.

I cancelled WoW again last night, yeah, I just bought the expansion and paid for a month, but it’s the same old same old and I don’t want the same old.  Nope, hoping for something new, getting more of the same thing regurgitated to appease the mass audience.  To those having fun, knock yourselves out, have fun.  It’s just not for me.  The whole MMORPG genre seems to be not for me right now.

Fatigue is horrible.   Monday I have to be at therapy at 1:30.  I hope I am awake for it.  Beyond that, I haven’t made any other appointments,  Cuz of fatigue and shuffing.  Finally finished shuffing on the top of my head.   Heh, hair is growing back finally.  Not a  lot yet, But you can see and feel it.

I can’t wait for October 2nd to finally get here.  I should’ve said September 18th, but then we wouldn’t have Devin.  And Devin is a good kid.  I look forward to playing with all 5 of my players.  Should be a good group.  Yup.  Somehow, a group of 5 gives a lot of melee, a goodly amount of spellcasting, some serious healing, if I Hadn’t seen the group built, I doubt I would believe it could cover so much with only 5 people.  It’ll be cool.

I got Teresa’s blessing to go to Thanksgivingfest if Dr. Alkhateeb gives his approval.  Hell, I am probably dying, what’s running off to Indianapolis for a weekend gonna do to change that?

By then, I will be off all the prednisone, and should be off all the immuno-suppressants.   Should just be living as me (with German parts).  Dr. A might say it’s too close to when I come off everything.

I got a lot of questions for Dr. A this time.  Will see him on Friday the 14th.  Every 2 weeks for the foreseeable future.  Every 2 weeks to say, “We don’t see anything yet.” Bah, he has quite the racket set up.

Sept 5th, DOOM and GLOOM with a glimmer of HOPE

As the days pass, my mood gets more down and down.  I should have started the D&D game in September.  Like this week.  But hey, if I had done that, we wouldn’t have Devin in the group and the kid needs a break too.

I’m not suicidal (yet).  I haven’t given up hope (yet).  Just knowing this is a final fight where the odds are very against me is tough to deal with.  Teresa is being so supportive, but I know deep down inside she is scared and upset too.

I just can’t believe I went thru all that shit without having a positive outcome.  I fought and fought only to be slap down.  I was/am devastated.  No one ever said life was fair, I just want to know who’s cheerios I pissed in to warrant such bad luck.

The sick part of this, I will probably get to go thru some serious GvHD before I die.  Just please don’t let it be my eyes.  I think everything else I can deal with.  Would hate to go blind because my lenses grew too thick and have to live with that for a while.  But the way my luck is running….

I’m gonna ask Dr. Alkhateeb if another transplant has a chance of fixing the problem.  I got good insurance, we can squeeze the expensive part in before the end of the year.  Where everything would still be covered 100%.  A boy can dream can’t he?

I had 16 chromosome pairs crossed before the transplant.  I have 6 now.  I still show signs of MDS in Bone Marrow Biospsy slides.  I’m almost in as bad of shape as I was when this started.  A little better in this case isn’t good enough.

I don’t want to be a big downer.   I don’t want to whine myself to death (literally).  I need a diversion, and that is what the D&D game is about.  I may start a 2nd again.  I couldn’t do it before, but now I need the diversion from life.   Maybe I can find a game to play in.  That’s be different.

I want to go to Thanksgivingfest this year.  I’m gonna ask Dr. Alkhateeb if it’d be ok.  The hosts have cats (so that might be a problem).  But if we can overlook the feline situation, maybe just maybe I can make what might very well be my last Thanksgivingfest.  Teresa wouldn’t deny me it if Dr. A approves it.  That is definitely on my ask about list.


D&D followed by more DOOM and GLOOM

OK, we finally have the composition of the D&D group set… I think.

Danny is going to play a Dwarven Warrior

James is going to play some kind of Barbarian

Jason is going to play an Assamir (Protector) Warlock

Devin is going to play a half-elf Bard

and last but certainly not least by far, Cori is going to play a Tortle Cleric (cuz they needed a healer).  And yes, for those of you who don’t know, she’s a giant bipedal turtle.

I think I have went over all my particular rules and idiosyncrasies on the Facebook group.  It’s all good, this party seems kinda mellow, so I could probably get away with slipping a rule or change in after we get started.

Speaking of getting started, the game starts Oct 2nd a 6pm Central Time.  Giving myself a little time to eat.  The games will go for 3 hours.  Making our Eastern Time players play from 7pm to 10pm.

This game is one of the few things I am looking forward to in my future.  I hope it doesn’t flop or I don’t flake or be forced to flake again.

My depression level is way down in the dumps.  Teresa keeps saying I need to go to my therapist or my shrink.  I’m not willing to change meds, so shrink is unnecessary.  I might, just might, go back to Cheryl and ask her to take me back.  I feel I need someone who knows what I went thru and can fathom what I am going thru now.  Cheryl’s husband had the transplant and everything is ok (lesser risk transplant, lesser chemo).  But at least she’d have a clue.

I just don’t know if I am ready to go tell someone face to face that there is better than a 75% chance that I am dying.  That realistically I am looking at less than 2 years to live.

Maybe I’ll try a new therapy place, and go with a total stranger.  That would probably be easier for me.   There are a couple new places in Adel which offer therapy.  Until winter comes I could walk to these places.  Decisions Decisions.

Oh well, I’ll figure something out.  Maybe I dont need anyone else.   Maybe this is for me and Teresa to handle.  BLAH

It’s September 2nd, and D&D is in the air

I decided since Dr. Alkhateeb has nothing forward thinking for me right now.  I got tons of time on my hands.  I decided to go ahead and start my D&D game the first week of October.  I asked my 3 confirmed players what day was good for them, I ruled out Thursday and Friday.  I had 2 no Fridays, and 1 Tuesday?  So Tuesday won.  So we are starting October 2nd.

I jumped on reddit/r/lfg reddit’s lfg channel.  I wrote up a quick post saying I needed 2 more players.  Wham bam, an hour or so later, had 2 more players.  So that brought our party to 5.  Which was the optimal number I wanted this time.

I eliminated Rangers and Assassins from the classes, and the evil races.  I also assigned excellent stat scores so no one will have a gimp character unless they make it that way.

Now, only one person has specifically chosen and race and class.  Cori has decided on a Tabaxian (cat person) wild magic Sorcerer.  Initially I was inclined to squash the tabaxian part, but when I thought of it and wild magic.  Makes perfect sense.  So Cori is ahead of the game right now.

Danny said Fighter or Barbarian.

I don’t know if James has spoken up about race/class yet.

Jason has a litany of classes he wants someone else to pick from.

And Delvin wants to talk to me later about his character creation.  He is relatively new to D&D so I figure I might just have to hold his hand while he makes his character.  It’s ok.  I remember when I was a noob way back when, when there was no elder to teach me the way.  Anyhow, I will talk with him and give him as much or as little help as he needs.  We’ll get him going.

We are starting in the Hole, a city built in the remains of an extinct volcano.  It used to be the star city of the kingdom, but since Stormhammer the old leader of the Hole died under suspicious circumstances.  The Council appointed a dwarf name Stonewalker as the new King of the Hole.  And drove the city into despair.  People are fleeing.  Magic is failing.  Long standing political trade deals have been broken.  And most disturbing is the thieves’ guild broke contact with the government and then disappeared from the Hole.

Bad things are happening in and around the Hole.  Any group that wanted to make a name for itself for good or bad, can make that name in the Hole.

Our party, is going to make a good name for itself.

I do not have a positive vibe about my future.   I honestly figure I have about 2 years to live.  I’ll be lucky to see 50.  So, I said screw it, I’m gonna run this game.  If I can only get 2 years in the game, then that is 2 years of something fun.

What we learned about today (important).

Today we had our bi-weekly visit at Mayo Clinic.  Poor Jeff, the PA who had me first, stumbled thru some very bad news, which made no sense.  So we had to go back later and actually see Dr. Alkhateeb.  Alkhateeb laid some heavy crap on us, and hope I make sense.

Basically, all that I went thru on this transplant was for pretty much nothing.  I still have messed up chromosome pairs, I still show MDS markers in my bone marrow.  Well color me screwed.

As of today, I am no longer on Prednisone, and as of Monday we will start heavily tapering my dose of Tacrolimus with the goal being off that in a couple weeks.  The overall goal is to remove all immuno-suppressing meds from my med schedule.  This is in hopes that the new stem cell’s immune system will get itself in gear and fix the problems.

Of course, this leads to other problems with GvHD.  Without the immuno-suppressing drugs, I am like a beacon for GvHD, the serious stuff.  And ultimately I can be dead before I turn 50.

It sucks.  MDS sucks.  AML sucks.  Cancer sucks.  Blood Disorders suck.  It all just sucks.

All that crap I went thru only to find out it didn’t work as intended.  If it didn’t work as intended, it didn’t work.

Needless to say, we are very upset right now and don’t want to talk to anyone about it, family has been told, but everyone else gets to find out thru this blog entry.  Please don’t ask me questions, I am not ready to answer them.

Wednesday, 8/29/2018

I felt fairly rotten when I went to bed last night at 9:30pm.  I finally crawled out of bed at 10:30am.   Yeah, I slept most of 13 hours.  Anyhow, I woke up and puttered around a bit.  Then Teresa (still sick, still masked and gloved up) removed my stitches in my chest.  While she was doing such, she noticed the GvHD Rash is back.   And it’s back with a vengeance.  Dig if you will chest, face, head, arms, and stomach are all bright red again.  I thought I was done with the Rash, but no, it come back now that I am almost tapered completely off prednisone.  We messaged Dr. Alkhateeb, waiting for a reply from one of his nurses.   Dollar says back on Prednisone but maybe not until we see him on Friday.  Until them we just use the medical creams and hope for the best.  UGH.

Like I said, Teresa is still sick.  Sinuses clogged, sneezing, coughing, fever, she’s got a plethora of symptoms.  She should have went to the doctor.  I can’t afford to get sick.  She is still highly contagious.  So far, we have been doing our best to not exposed me to her germs, and I haven’t got it.  I am thankful for that, I don’t want to end up in the hospital again.

Speaking of hospitals, Teresa almost took me in this morning.  Her forehead thermometer said 101.9.  The first digital thermometer said 97.9.  And the other one, luckily said 98.0,  I think the forehead fever is from the Rash.   Good thing we have 3 thermometers to rule out any anomaly.

I thought I could go back to playing World of Warcraft.  I spent 75 bucks to get going with the new expansion (60 for the deluxe expansion and 15 for the monthly subscription).  I was excited about it, I jumped right in, and then it hit me, this is the same crap I walked away from so long ago.  Now I don’t know what I am going to do.  I know I am gonna play this month out, but I don’t know about next month yet.

The shakes from the tacrolimus makes it hard to play any game.  Civ4 Warlords was the easiest.  WoW isn’t too bad.  Beyond that, I shake therefore I am.  Dr. Alkhateeb has actually started lowering my dosage of tac.  Supposedly I should be off of it by now according to other doctors, but I had the rhino virus which threw a monkey wrench into everything.   We are now catching or rather were, the Rash came back.

Still thinking that the Vidasa chemo starts next week.  It’s either then or in 3 weeks, if it’s in 3 weeks, I will probably be down until January.  Even bump chemo can mess you up.  If it’s next week, I should be good to go by Christmas.  That is assuming that I have 4 rounds of this crap.  Dr Alkhateeb said 3 to 4 rounds.   We can hope for 3.  Then it is Thanksgiving or Christmas.   Yeah, lets hope for only 3 rounds.

I have an appointment with Dr. Wehbe tomorrow.  A condition for getting released from the hospital when I did.  I like Dr. Wehbe better than I like Dr. Alkhateeb, better bedside manners.  When I was getting chemo back in 2015, I saw Dr. Wehbe every day and he always was cheery.  During the whole transplant procedure I ran into Dr. Alkhateeb once in the hallway, he was pleasant but that was the only time I saw MY DOCTOR prior to the transplant and prior to finally getting released from the hospital proper.

I’m still weak, but I am getting stronger.  Things I couldn’t do yesterday, I can do today.  This is good.   A small improvement every day, can’t ask for more than that.

I need to find something to eat so I can take my Mag-OX (Magnesium).  The only pills I take at not a  set time cuz they have to be taken right before or right after a meal.  Pain in the butt to remember.   Anyhow, I gotta go.