The day after another trip to Mayo

Yesterday, we went to Mayo, yes, I know, it was a Tuesday and not a Friday.  Well, I had to get an upper endoscopy before I saw Dr. Alkhateeb again.  So off we went in the serious rain.  Took us a bit longer to get there because of said rain.  Seeing Teresa drive 45 on a Freeway means that the rain was bad.

We made it there safely.  My blood draw was scheduled at 10, I got it done at 11:25.  Good thing the lab people aren’t sticklers to time.  My only other appointment was the upper endoscopy, which was scheduled for 12:30.  So had plenty of time to get from the lab to the endoscopy place.

The endoscopy itself wasn’t much.  Had a long wait in the prep room cuz they were still at lunch.  But once it got moving, it got moving.  I was rolled into the prep room where I met the doctor (name irrelevant), the 2 nurses, 1 who was to monitor all the monitors and 1 to give me a nice buzz.  They told me I wouldn’t remember anything, but I remember it all.  Anyhow, the doctor summoned his boss to come sit and watch.  The meds to make me not feel it went in, and shortly after doc started the trail down my esophagus, into my stomach, and down by the ruen-y.   The whole thing once he got started took a half hour.  Waiting to get things going too 45, and they made me hang in recovery for about 45 minutes.  So, yeah, that was 2 long hours.

We forgot to stop by the CPAP store yesterday.  They have new pads for my CPAP so it won’t hurt anymore.  Doh, silly us, so excited to get out of there we just blew stopping by off.

OK, so if the upper endoscopy news is bad.   We should know it tomorrow.  I don’t think it is bad at all, so I am expecting to not hear results until next Thursday (THURSDAY?).  Yeah, they have really screwed around with the days we go, but they do have it where we can get up in the am and drive back in the evening.  That saves us from staying the night.

All that cuz I ain’t hungry.  I don’t know why I am not hungry.  But there isn’t anything wrong with my stomach.

D&D starts in 13 days.  About damn time.  I do this to myself every time I start a new game.  Pick a date way far away and then go crazy waiting for that date.   I actually didn’t do as bad as normal this time.   This time I think I only went 30 days, 1 month, and part of that was I was waiting for one of our players to return from Ireland.  I have done 60 day waits before, and talk about driving me nuts.  This 30 days has been quite enough.

The game itself is gonna be good.  A Dwarven Fighter,  A Dwarven Barbarian, A Half-Elf Bard, as Assimar Warlock, and a Tortuan Cleric.   Should be an interesting mix.  Will be good once we get everything going.

I’m not gonna complain about not getting snail mail addresses to send invites to for my AINT DEAD YET Party.  I got til January to collect addresses.  So, maybe people are slow.  Priorities are a little whacked.   It’s all good, I will get my snai mails eventually and all will be well.

mood heading down for stupid reason

Hmm, when it was all theory, I had all sorts of people coming out of the woodwork about my party.  Now that I have asked them to supply me with (in some cases) real name and snail mail address, the new mail address seems empty.  Yes, I was having a problem with gmail so I switched to aintdeadyet@mail.com.   SO, if you read this and are coming or even thinking of coming to my AINT DEAD YET party on March 30, 2019, please email you name and snail mail address to aintdeadyet@mail.com

My good mood is actually starting to fade.  I am planning for a lot of people, cuz a lot of people have said they’d come.  Now people aren’t rushing out to send me their snail mail addresses, makes me feel that the party isn’t worth having.  BAH, I am just being silly, my friends will come thru for me.

I’m gonna hold off putting any deposits down for a little while, until the number of names/snail mail addresses climbs.  Don’t want to be left holding the bag so to speak.

Mom said that she and Jim are coming for sure.  And a scattering of Jackson clan too.  So actually with the addresses I got I have about 20 committed.  I’m just gonna have to reach out to some of the people who were positive and get that number to 50.  Shouldn’t be too big of a problem.

Healthwise I am still doing ok.  Nothing new is going on in that arena.  And I am thankful for that.  Yeah, I have some GvHD which coincided with the lowering of my immuno-suppression meds, that has Dr. A. kind of befuddled.  I mean he knew it was coming, just confused as to why it’s not worse maybe.

Beyond that is the biggest concern, MDS phases into AML.  Normally it’s no big deal, normal AML is pretty easy to treat 1st time.   2nd time, things will get ugly, chemo-resistant AML  No way to treat, it’s just a game of wait until you die.  THIS IS WHAT IS MOST LIKELY TO HAPPEN TO ME.

So it comes down to either Chronic GvHD (the real bad kind) and or incurable AML.

Dr. A. refuses to give a time, because he is still treating me.   He is talking IV chemo started while on ammuno-supressives.  Isn’t supposed to be that way, but we are in desperate times, and desperate times require desperate measures.

We shall watch and live and fight thru this and really hope for the best.

Complicated Living 101

Went and saw Dr. Alkhateeb again yesterday.  Long day, left here at 6am and didn’t get back until 8:30pm.  Damn was I tired.

Dr. A is still treating me.  Not shifting into palliative care.  That gives me some hope I guess.  Treating me in hope that he can come up with cure for my MDS.

Have to cure the MDS because if it doesn’t get stopped, it will turn into incurable AML, and that is literally 2 or 3 months to live.

So, if nothing else, Dr. A is prolonging my life.  Which at this point, that is all I want.  I want to live until April 3rd, 2019.  That is past the party, past Teresa’s birthday and past our 26th wedding anniversary.

I really hope he does find a way to cure me.  I don’t want to die.   But we are still at this 20% chance of survival.

D&D is set to start a little over 2 weeks.  Have to get on mumble on the 25th for a few minutes.  But it looks like everything is cool with it.  I think I have 1 power gamer, 1 noob, and 3 normal players.  I doubt the power gamer will stay cuz I don’t run a power game.   But we shall see.

The Ain’t Dead Yet party is set to roll March 30, 2019.  I have asked everyone who is planning on coming to send me their snail mail address so I can send them a real invite.  Real invites are going out in January.  In case you read it here an not on Facebook, please send an email to tanzennackt@gmail.com

I have the building (and the tables and chair)

I have the caterer (will be talking to them this week)

I have the DJ (and Dance Floor).

Now all I need to know is who is coming and how many are they bringing.

I still need to find a hotel which will give discounts.  I know I am gonna need at least 20 rooms.

I am having fun planning the party.  At a time when I should be all DOOM and GLOOM, I’m in a pretty good place overall because of this party.  My new therapist said she though it would be good for my mood.   Well, she was right, but once everything is in place, I shift into wait mode and wait mode SUCKS.  But that is not for a little while yet.

 

 

A Good Day, No cats, and GvHD

Perseverance pays off.  Trying to find a place to hold my party, a party for 75 people.  The cheapest I had been quoted was 1000 dollars before add ons, for a place big enough to hold 300+.  Well, I certainly didn’t need no 300+ sized place for 1000+ dollars.  So I called and called, finally I googled the American Legion post in Urbandale (Duh, should have started with them).  Holds 150 people seated, we have a DJ and a Dance Floor, so still plenty of room for my 75 expected guests.  500 dollars + 200 dollars cuz I have decided to have alcohol and for that a Urbandale Cop has to be on site.  I have decided, to cut costs down, it’s going to BYOB to share.  I’ll supply the coolers and ice.  Otherwise, if I supply the alcohol, I have to get a liquor license for 1 night at 999 in Urbandale.  So, I am supplying ZERO alcohol myself, but directions to the nearest liquor store will be available.

75 guests is a huge number.  I really only figure 50.  But I got 50 yes comments on my posts when you count families.  So 75 might be doable.  I am gonna collect addresses and send out RSVPs in January I think.  That’ll give me time to dink with the catering if I have a smaller of large number than I expect.

Would love to reach 100 and its not impossible.  Just highly improbable.  Once all the woopity do about me dying calms down, people might just come out of the woodwork to say goodbye to an old friend.   PLUS, only 1 single local person made any notion that he’d be there, Drew is my friend, he, his wife, and 2 sons will be there.  I’ll get him to bug Chandler, and I’ll but Jon, plus there are all the chamber people who I would love to see again.  Yeah, I can probably get 20-25 local, makes the 75 and 100 goals more reachable.

Gotta find a caterer.  Used to be Brenna was the go to for all things catering.  But she quit a year ago.  So, now I gotta find a different caterer and that makes me sad.  At least now I have a confirmed date and location so caterers will talk to me.  That is a job to start probably next week.  I got 199 days to pull this off.   It’s all good right now.

Heh, I may even have hair on top of my head by March.  So I wouldn’t have to wear my red baseball cap for the party.

My doctor shot down me going to Thanksgivingfest.  Cats are my downfall as of now.   Can’t be around cats for that long.   Oh well, most of the Thanksgivingfest crew are coming to my party, so it turns out All Good.

Teresa asked me, “What if you aren’t gonna die?”  Remember there is a 20% chance that I will survive, maybe not well, but survive.  Well, if that’s the case, then my party becomes “Screw the Odds”.

I’m slowing starting to get more GvHD symptoms.  Same once I reported before.  Just more of them.  I’m a little scared of the chronic GvHD symptoms, maybe not little, maybe lot.  They are coming, I am sure of it, I am sure I will not avoid the chronic GvHD stuff, I am not that lucky.

This week is another trip up to Mayo on Friday.  Don’t want to do it.  Think he could easily treat me over the telephone.  But 5:30am we will be on the road to Mayo.  So he can go, “You’re doing good, see you in 2 weeks.”

Oh well.

It’s only Tuesday?

It’s only Tuesday, this week or few days rather feel like they have been going on and on.  Like it should at least be Thursday.  But alas, it’s Tuesday and Tuesday it shall be until Tuesday ends and Wednesday begins.

Caterers are weird.  Not a single one I contacted today would talk to be beyond the basic basics without a “confirmed” Date and Location.  Frustrating when I am just trying to make a budget right now.

So, I have switched from contacting caterers to contacting locations, all of them seem to big or way too formal for what I am looking for, either way too expensive.  My friend Brenna said she knew a place in Windsor Heights, or the American Legion in Urbandale.  She has yet to provide me with phone numbers though.  I supposed I could google the American Legion in Urbandale.  Fatigue has set in now though, it may well be nap time.

All the places I have contacted so far are set to do weddings.  Um, don’t need another wedding, how about a big open area for dancing and hanging out?  I got a DJ and a dance floor, so that is no big deal.

I may be over-estimating by saying 75 people are gonna show, but would rather over shoot the undershoot.  And its 6 months for people to figure out how to get here.  If I end up hosting this in a hotel, I will arrange with that hotel to give a discount to rooms.  I am sure they will be willing.

I had 50+ people comment positively on Facebook in the matter of hours.  I guess people want to meet me now that I am dying.  A Hello Goodbye thing.

So, tomorrow I should have more places to contact.  And then a list of caterers who snubbed me nicely today.  Then I will have prices of the big things.  I forgot to ask the DJ how much she’s gonna charge, but she’ll be gentle, she’s a friend.

We have a D&D Mumble test set up on the 25th.  That way we can troubleshoot everyone’s mumble issues before the game on the 2nd.  Mumble is braindead to set up, so nobody should have a problem.  But better safe than sorry.

Fatigue still has a good grip on me.  Tired but not sleepy.  Well sometimes sleepy.  Dr. Alkhateeb’s nurse Teresa said the fatigue can last a year.  Yo, that would suck.

I hope Teresa got more Gatoraide from Walmart.  I’m gagging and vomiting back water again.  I’m getting sick, GvHD coming off these immune-suppressants.  At least nothing horrible has hit yet.  But Gatoraide is the only thing we found that stops the gagging and vomiting.

Well, I am tired, and Teresa is about to be home.  So, I’ll let you all go.    Here’s some music

Really is a 4 or 5 track mind

Ya know something, it’s hard to eat when you just aren’t hungry.  It doesn’t matter what Teresa makes or goes and gets me, I’m just not hungry.  According to the scale this morning I was 180something.  I am dropping weight fast.  Scarily fast.

The consummation of drink (not alcohol) is even harder.  I’m totally not thirsty.  But I know I am damaging my kidneys.  STUPID.  All I have to do is drink, and I really can’t bring myself to drink much.  STUPID.

I made it to my new therapist’s appointment.  Wide awake thru the whole thing.  Didn’t cry.  Told her most of everything that is going on.  The jist being that my transplant failed and there is small chance of survival.  And that my bipolar is going nuts.

By now, you folks on Facebook have probably seen my query about if I held an AIN’T DEAD YET party.  If I get enough positive responses, it will be held the end of March.  Hoping for an early end of winter.  Got to get ahold of Brenna and see if she is still doing the party thing at Park Place.  If not, I will find somewhere else to host the party.  I really want to do this, but need enough friends willing to come to warrant the cost and effort.  So, I can pitch it to the boss.

I love that my wife has been working from home since I got home from the hospital.  I love having her around.  Tomorrow is going to her first day back to work cuz of a dumb human resources meeting.

My friends are posting such nice things on Facebook.   I hope I get enough to warrant throwing the party.

Sorry for the short blog entry today.  Kinda got 2 things stuck in my head and you guys know em both.

Notes to self and other thoughts

I unintentionally have given up eating.  I am down to 191.6lbs.  Which is absurd for me, considering when I went to Mayo and checked in I was 236.4lbs.  Admitted that was the heaviest I had ever been.  I sure as hell aint going for the lightest I’ve ever been, that was be plain silly.  NOTE TO SELF :  EAT MORE.

While I have given up eating, I slowed way down on my liquid intake too.  That is messing with my kidneys.  More concerned about this than losing the weight.  NOTE TO SELF :  3 GLASSES or 3 BOTTLES or any combination to equal 3.

Tomorrow I have a first appointment with a new therapist.  She seemed nice enough on the phone, it’s just that my fatigue has me sleeping until 2:30 – 3 o’clock, where my appointment is at 1:30.  That’s gonna be tricky.  Hope I don’t fall asleep in her office.  Wouldn’t be the first time I fell asleep on a therapist, but first time on one I don’t know.

D&D is ready to roll.  Well, except Devin is still in Ireland.  And we haven’t tested mumble with everyone yet.   I am pretty sure that at least 1 is gonna use plumble (the mobile version of mumble).  Need to get everyone on and chatting before the game night so we can get the game going quickly.

If, by some miracle, I do the slim margin and come out of this alive.   I’m gonna throw a party, invite everyone I know and even some that I don’t know.  It’ll all be good.  Work out some deal with one of the hotels in West Des Moines (cuz the motels down the road are kinda skeezy), so maybe some of my friends and family who are a ways away will be able to make it.

Now for the reality folks out there.  Teresa and I are gonna take a cruise, or go to Harry Potter Land for a few days.  We haven’t quite decided yet.  I’m not big on the Harry Potter thing (SHOCK) so HP Land doesn’t feel me with excitement.  The cruise is 8 days long and have We Will Rock You playing during the cruise.  That’s more my style.

It all depends on when I find out one way or the other.  Until I don’t feel good, I plan to visit with friends and have a good time.  BLEH, until I am sick, I am ok.

I have a bucket list, but most of it is too expensive.  Learning you are gonna die AFTER paying all the medical bills.  Not the smartest idea.  Should’ve RHINOED the bills, and went on vacation and then worried about the bills.

Teresa is gonna be hard pressed financially if I end up in a palliative home.  Hospices aren’t cheap.  At least not the nice ones.  And I wouldn’t stay in a not nice one.

I think my platelets are tanking again.   I have a big 3 week old bruise that looks a week old and the oldest.  I guess we will know on Friday when we make the trip up to Mayo again.  Yeah, it’s been 2 weeks.