Went to Mayo… again

Yup, yesterday was our not so normal after hospital stay visit with Dr. Alkhateeb at Mayo Clinic.  Once again, it was a visit we could have phoned in, but he did answer a question for me… “If what you are trying fails, how long do I have to live?”  His response, “certainly months, 6 months to a year.”  I respect him that he would just come out and answer me.  Not every doctor would.  So, I still think the odds are very much against this plan of his working, the one he personally gave slim odds to.  So I am figuring on living 8-10 months, which means my party at 6 months sounds good.  More on the party in a bit.

Dr. Alkhateeb hugged me.  I am not sure how I feel about that.  I hug Dr. Wehbe and it’s nothing, but part of me just doesn’t think Dr. Alkhateeb is at the hugging stage.  But what the hell, it doesn’t hurt.  He really is on my side.

Dr. A also moved us to once ever 3 weeks.  That is a nice move on his part.   Every 2 weeks seemed like we were always on our way to Mayo, every 3 weeks sounds more reasonable.

He thinks I might have I forget what deficiency.  One that has the simple cure of a steroid taken twice daily.  This steroid should take care of my nausea, my fatigue, my lack of hunger, my lack of thirst, and a small litany of other things that have been bothering me.  The only problem is, steroids put me to sleep and sleep and sleep.  Like 16 hours a day sleep. But we’re gonna give them a try and find out if it works to fix my eating and drinking.

All in all a good visit to Mayo.  If we can stop the 5am wake ups, and the 9pm returns home.  That would make them great visits.




“AIN’T DEAD YET” Is definitely going to be on.  The party should be good.  Still don’t have a ton of people’s addresses yet.  I need those for invitations in January.  When I posted about having the party, I had well over 50 people say they wanted to come.  Now I don’t even have 20 addresses.  Guess I will have to spam Facebook again.

I have decided on where its going to be:  American Legion Post Urbandale

I have decided who is catering              :   Big Al’s BBQ

Alcohol                                                         :  Bring your own

DJ                                                                  :  Brenna Young

DATE                                                            :  March 30, 2019

TIME                                                             :  To Be Determined

I will be releasing the hotel information with the invitations.

I’m in the need of a party.  Have people coming from all around.  It’s going to be great.  Just hoping I will still have the energy to play gracious host.  Its gonna suck if I am way down for the party.  But one way or the other the party will go on.




I am sure I mentioned this, but D&D went well last Tuesday even though I felt like total crap.  I am looking forward to the next session.  I should feel much better for it.  I get a 2Litre saline infusion during the day on Tuesday. So I should feel pretty damn good.  As long as they dont give me steroids again.





Slow saline, Dr Shorty, D&D

Took forever at the Infusion center to get me my saline in.  Like 3 hours for something that at most is supposed to take 2.  Totally their fault too.  I showed them my good vein and they wouldn’t use it cuz it’s the blood draw vein.   BAH.  I have had so many ivs in that vein, one more isn’t going to kill it.  Anyhow, they used a vein that normally fails after 5 minutes or so.  It didn’t fail, it just kept causing the machine to beep pressure errors. So in what seemed like forever, I got my infusion.  They were nice though, not that I expected anything less.  We had some laughs.  It could have been a lot worse.


Tomorrow, at noonish, I go see Dr. Wehbe.  Why?  Not really sure.  I guess this visit goes all the way back to my 3 days in Mercy Hospital.  I’ve had to reschedule multiple times cuz of Mayo visits.  This time its getting squished in between getting saline and a Mayo Visit.  Heh

It’ll be good to see Dr. Wehbe again.  I like the short guy with the bow tie.  He is a real nice guy, I wish he would of been the one who told me my odds and fate.  Somehow crappy things sound better coming from Dr. Wehbe.



The first D&D game went fairly well in my opinion.  Went a little slower than I expected.  But I felt like crap, so it was good it didn’t go too fast.  I was happy with it overall.

Looking forward to next week.  Assuming I don’t end up in the hospital again.  I got a pretty wicked cough again, welcome to have proper fluid intake.  I get my chronic cough back.



Short post tonight.


The Nightmare Continues

I haven’t been able to eat or drink all day.  So tomorrow I go to the doctor for an IV of fluids.  Not how I want to spend my Wednesday morning, but hey, it’s gotta be done.  At least I am not bad enough to have to go to the Emergency Room tonight.


This sucks, I have never had a problem eating or drinking before, but now it’s like Mission Impossible.  I’m just totally not hungry or thirsty.


My wife called Mayo, who said “we can transfer him up here.”  That’ll be the day that I am dying.  If I get admitted to Mercy, I will damn well get released from Mercy.  I see Dr. Alkhateeb on Friday anyway and there will be more lecturing, but there doesnt seem to be anything I can do to change things.  BAH.


My wife then called my local Oncologist, who was out of the office, but his nurses weren’t.  They are all set to do blood work and give me an iv of fluids tomorrow morning.  I have no idea if I will see Dr. Wehbe tomorrow or Thursday (like I am scheduled).


They have already tested and retested me (They being Mayo) this is not GvHD.  Much to everyone’s confusion.  My stomach is in perfect health.  Everything on the way to the stomach (which isn’t much) is in perfect health.  Hell, after all these tests, except for the fact the I am dying, I am in pretty good condition.  Dehydrated and weak, but the rest is doing good.


I thought the nightmare was over when they released me on Friday.  I did good enough over the weekend I think.  Yesterday I know I Did good.  Today hit me like brick wall.  The nightmare continues.

D&D, Health, and Hopes

The D&D Game starts tomorrow.  Only 4 people on night one of the game, but next week will have 5.  Assuming the 4 can rescue the 5th tonight or early next week.  I have been looking forward to this for quite a while, it should be a good game.  It sucked that I had to sack one friend from the game.  Hadn’t spoke to him for 22 days even after asking him questions directly thru messenger.  I hope to become friends with all the people that are playing in my game that I am not already friends with.


I still wish I could find a local game that I could get in to.  At least until I can’t play anymore.  It’s frustrating…there has to be enough gamers in the Des Moines area that 1 more should seamlessly fit in.  Need to go to Mayhem Comics on Wednesday night (D&D night) and ask around.  But how many groups would want to add a dying guy to their playing group?


So, I guess I am stuck playing games online that I run.  So far, people who have responded to my request for players have really been understanding.  The players who are playing starting tomorrow night all know I am dying and I will miss some cuz I will be in the hospital.  So far, they have all been cool about it.



Health wise, I’m eating appropriately for a change.  Putting on weight.  Having problems drinking enough still.  I used to drink plenty before the transplant but since the transplant it’s just been tough.  I don’t know why drinking has become such a problem, but hey, I am trying.


Yeah, I spent 36 hours in the hospital Thursday and Friday.  They tested me out and it turns out I don’t have anything wrong with me (besides the obvious).  I started walking again, but 1/2 hour is way too much for me right now, 20 minutes is about it.  I learned that the hard way.


Fatigue is still a major issue for me.  Got the doctor and company stumped as to why I have so much fatigue.  He says I should have some fatigue, but not sleeping as much as I am.  It’s just I wake to take my pills, eat and walk.  And then veg around the house, mostly in bed.  Usually taking a nap or two during the day.


I am hoping to be healthy enough on Friday (next Mayo appointment) so that we can progress in the great plan.  Dr. Alkateeb has been holding off cuz my numbers haven’t been right and/or I have had a virus of some form.  We shall see if I can do the healthy thing for at least a  week.



Confused

So I technically spent 26 hours in Mayo.  Took in a lot of fluids.  Feel a whole lot better.  I guess that is why I went into the hospital, I was in BAD shape.

Friday morning at midnightish, I was awoke by a large man in my room.  I had no idea how I had gotten into said room or why I was in said room or why I was wearing 1 sock.

I had a total mental freak out, luckily Jared the nurse was there to straighten me out carefully.  Although Jared was the big man in the room with me, he pulled up a chair, and we chatted.  It took him about 20 minutes of questions and answers to get back to reality.  Scary stuff.  It’s all right.

The doctors who roam as a pack had no clue what to do with me.  I had no infection, all my tests came back clean.  So, when you have a perfectly healthy guy taking a hospital bed, what do you do? You send him home.  So that is what they did.

Teresa is a driving machine.  3 1/2 hours up to find out I was staying on Thursday, 3 1/2 hours back late Thursday.  3 1/2 hours up when they let me go on Friday, 3 1/2 hours back.  That’s a lot of driving for 2 days.  I love her.  She is the greatest.

I did get to see my favorite nurse in training Sam.   She is a cool young thing.  I gave her email address for my party next March, I hope she emails me for info.


My friend Danny has sort of disappeared off the internet.  At least as far as I can tell.  He didn’t respond to my message ,”Are you ok?”  Makes me worried about him.  But I can’t have a D&D player who won’t respond to me.  So out with Danny and in with David.  It’s all good. I just have to message Danny that he is not in the game anymore.  That is gonna suck if he does answer finally.


Everything is set for next Tuesday and the new campaign of Mumble D&D.  Barring me ending up back in the hospital (ya never know, I am a dying man), we should have a bang up time with the party running around the Hole.  It’ll be the third time I have used the Hole as a backdrop, Cori has been in all the runs, so this time I threw 50 years into the future and killed off the happy and gracious leader replacing him with a whiny and whimpering leader who has offended every other leader and single handedly destroyed all trade deals the city had made.  So, at least it’ll be different, for Cori’s sake.


It’s weird being a man with a limited life.  Kinda glad I don’t know how much time I have left.   Would be very weird knowing that I think.  Right now, it’s sad, and scary.  I’m sure I have 6 months to live, maybe even a year.  Better have 6 months to live, would hate to miss my own party.


Teresa and were discussing dinner.  I still can’t eat much, but I sure can try to eat more.  Drinking I HAVE to fight thru and drink and drink,  It’s hard when you just don’t want to eat and when you do, everything tastes blah.  It’s really difficult.  But I will survive the eating issues and the drinking issues, I have more interesting ways to die….


Hoping for a Miracle

I was supposed to go to see my regular doctor (Chris the PA) today cuz of symptoms I am having but no fevers.  I would have went if the city hadn’t decided to chew up our road and put blocks in front of our driveway.  Anyhow, I don’t need a doctor anyway.  What I need now is a miracle.


 


We go to Mayo again on Thursday.  Hopefully something will happen this time.  I am getting real tired of going all the way up there only to have him come up with some other reason we can’t take some step…any step.

Dr.Alkhateeb has spoken of giving me a different chemo, one that is given by IV (I don’t know the significance of that) but he said it can be started while I am still on anti-everything meds.

I just feel like we are achieving nothing, and time is ticking away.  The longer we go, the higher the chance that we will be too late.  Too late meaning I will have chemo-resistant AML and be on the quick shot to dead.

The really sad part of all this is even if he pulls off the miracle, I will only have like 5 years of life left.  So, the miracle cure, really isn’t much of a cure.


The gods have chosen to frown upon me this time around.  I am a firm believer in Karma and Reincarnation.  Either I am paying off someone else’s BIG Karmic debt from a past life, or in a future life of mine, I will be a fricking rock star.



That paragraph there might be the only time I mention religion here, I would apologize if I offended any of my readers, but nope, not sorry this time.  Open your eyes and see what there is to be seen in the world.  I promise not to bash your beliefs if you don’t bash mine.  DEAL?



D&D Game starts next week.  FINALLY.  Tonight, we are testing mumble to make sure everyone can connect.  Then next week,  we will finally get to get started.  I am so looking forward to this.  It’s been a long time.

I’m kicking around the idea of making them level 3.   Level 1s are really squishy.  And at level 3, all classes have chosen their specialty.   but right now, like I said, I am just kicking around the idea.   The first adventure I have planned can be done by up to level 5s I think.  It’s all good, whatever I choose to do.  They’ll have fun and that is the goal.


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.