There is some good in here

It’s Sunday, October 14, 2018 and it snowed here today.  Not just a  dusting but a good old fashion snowing.  Don’t know how much there was, it has all melted, but it was a snow.

With this wacked weather I alternately feel wonderful and horrible.  And my god does my cough sound horrible when it graces us with it’s presence.

I hope to feel good enough on Tuesday to run my D&D game as I just today announced I was feeling better and nothing shall stop the game.  LOL.

Tomorrow at 2:15 I go get saline again.  Every Monday and Thursday I will get 2 liters of saline pumped into me.  Until I can drink enough of my own multiple days on my own.  To be honest I don’t know if that is ever going to happen again.  I try, I fail, simple as that.

Dr. Alkhateeb has finally come to the conclusion that it’s time to lower my tacrolimus (immuno-suppressant).  In another 5 days or so, it will go down .5mg or 1 pill if you’d rather.  40 days after that I should be completely off of it.  And then my new stem cells get free reign thru my body, hopefully killing all the cancer cells.  Unfortunately, they can’t tell the difference between a cancer cell and a good cell.  So they will go ape all over every cell until they are happy.  Or so I have been led to believe.

Also during this time, I will be more susceptible to Graph vs Host Disease.  Not just the little GvHD episodes I have been having all along, the big bad ones have a  greater chance of taking hold.  A little scary but nothing I cant handle, people keep telling me I am tough and brave, well this is my chance to prove them right,

Unfortunately during all this time is clicking.  MDS turns in AML.  I have been treated for AML before which makes the new AML immune to chemo.   Which means I will die.  According to Dr. Alkhateeb it could happen in months, 6 months, a year.  There is no way to know at this time or any time until it actually starts to happen.   That is what really sucks, there is no way to know.

Sometime between those months, 6 months, or year, I will be put in a hospice against my wishes.  But eventually I will become too much for Teresa to handle alone.  And a hospice is the only real choice for the kind of care I will need.  And there I will stay until I die.

I hope I am wrong about the hospice, I really do.  I would rather end up in Mayo until I die.


MAJOR SUBJECT CHANGE-  WAS TOO GLOOMY


The party is on for March 30, 2019.  I have put the deposit down on the American Legion Hall. The parking SUCKS there.  Gonna have to have people carpool from the hotel.  Crap, forgot to contact the hotel this week, so I will have to do it next week.  Crazy how it keeps slipping my brain.  Would do it right now, but I feel really crummy.

Anyhow, the Hall isn’t huge, will easily seat all the people who have confirmed and then some.  Plus room to have fun too.

Having a problem with Big Al’s Catering.  I emailed AL, per his instructions to get emailed back a Catering Menu.  I’ve tasted his food, it’s good.   So I want to figure a price, thus the need for a Catering Menu.   I asked for it on Wednesday, it’s Sunday and no Catering Menu.  I know I got plenty of time, but he doesn’t know I have plenty of time.  You’d think he’d be on top of getting me the Catering Menu.   I will email him again tomorrow.

Decided against paying for a DJ.  Just gonna go to Rent a Center and get what I need to set up a stereo and play IHeartRadio Party Hits all night.  Yup, trying to save some money.

My brother pointed out that I am gonna need serving spoons and tongs.  Catering companies don’t always supply these and they are kind of necessary.


I had to have a talk with one of my D&D players about language.  He kept using the C word that women specifically hate and dropping the F-Bomb in just about every sentence.  Normally foul language doesn’t bother me.  But since 1.  We have a female player  and 2.  It’s my game and I don’t want to hear it so much.  That means he gets told to keep it cleaner.  If he chooses not to listen, I’ll boot him.  Simple as that, I have people in line who want to play.

It’s Sunday, we play on Tuesday, and I have no clue what I am gonna do with the party this week yet.  A well prepared DM, this week I am not.  I’ll come up with something marginally cool and relevant tomorrow.  I have no fear of that.


Sorry, for the doom cloud that hangs over the first half of this post.  I don’t know where it came from, but it feels better getting it out.


Hey, it was a Friday and we didn’t go to Mayo

Today I slept.  Slept and slept and slept.  Somewhere in the 16 hour range.  I was so tired when I went to bed last night I told Teresa I was sleeping in.  But that is borderline ridiculous.   Oh well,  it’s the weekend, I don’t have to be awake for it.


This is the first Friday not having to go to Mayo, we have another one next week.  That;s right, 3 weeks from last trip to Mayo is next trip to Mayo.  I have really began to dislike that drive, especially when I don’t feel good.


Speaking of how I am feeling, great is the word.  Yup, I am saying that I feel great.  Except being tired all the time. But we know what is causing that, so we get to talk to Dr. Alkhateeb next visit and see if there is something else that can be done besides steroids.


Being backwards on how I react to steroids always causes problems with new (to me) docs.  Prednisone, everyone was worried I was gonna become a crazed axe murderer, I turned into a sleepy, lovey, teddy bear.  Not a teddy bear on the current steroid, just tired.


Yeah, you have been reading right, the only thing bugging me is my sleep habits.  Even being on Deathwatch Clock isn’t really bugging me much.  Sure, if I think about it hard then I get depressed.  But we are looking at a year or so.  No sense in being gloomy that long.


 


D&D is going really well.  My players are having fun or so they are saying.  Feels good to know I can still run a fun game.  I have decided against running a second game.  I was gonna run another game but no, my mind wouldn’t be able to handle two.  And both games would suffer.


Which brings me back to looking for a game to play in.  I could easily play in a game and run my game.  It’s just hard to find a group of players in normal places, but Des Moines is just weird.  Maybe I will go down to Mayhem on Wednesday and see if anyone is looking for players.  The thing I have going against me is my age.  48 is considered ancient to most players.  Oh well, it can’t hurt to go down to Mayhem and look around.


It happened to my parents when I invited my friends Bruce from Valpo Pet and Hobby to come over and play.  Bruce was in his 30s, I was 18.  Bruce shows up and my parents were shocked that he was so “old” comparably.  I can imagine the parents of a 16 year old gamer opening the door to a 48 year old man.  Probably older than the parents.  LOL


I miss playing.  In case you can’t tell.  In theory I have a year in which I could play.  Just need to find the appropriate group.  I could try reddit /r/lfg  and see what response I get.  I just don’t have anywhere to host a group.  I need to find a group which has a place to play.



The party is on.  March 30, 2019 AIN’T DEAD YET or BEAT THE ODDS.  Depending on where I am in treatment.  There is a 5-20% chance of surviving this.   So, hopefully by the time I order signs I will know one way or the other.


3 Days in a row

Yep, I still feel good.  These steroids appear to do their job.  Whatever deficiency I had appears to be going away (Sorry, can’t remember what he called it).  I am eating more, drinking more (still not enough), when I am awake I am not fatigued.  The steroid itself is making me sleepy like nothing else.  But the hours between sleep are good.  This dying man says thanks to Dr Alkhateeb for making his days a little more livable.


Speaking of Dr. A, he has decided FINALLY to start taking me off Tacrolimus.  1 pill every 10 days, I have 5 pills to go.  So 2 months from now I’ll be talking more about Frankenstein.


Tomorrow at 1 I go get Saline at Dr. Wehbe’s office.  They called today and basically blamed me for not making any appointments.  Dr. Wehbe’s words were “We’ll take care of everything.”  Heh, I played nice and now have an appointment tomorrow that I need.


Today I went to lunch with Drew.  We went to Big Al’s to taste their wares as potential caterers for my party.  YUM was the word.  Just waiting for a catering menu to be emailed to me, so I can figure out prices.


Then I went and saw the American Legion Hall.  It looked like every ALHall I have ever been in, variations on a theme.  Got the grand tour, gave him 400 dollars in deposit for my party.  It’s official now.  March 30, 2019.  The only problem with the Hall is parking.  Gonna encourage people to carpool from the hotel.


Need to get on the hotel issue soon.  Slackin Slackin Slackin


Tired.  Gonna nap.  You all have a great day.


2nd day Feeling Good… look out world

Feeling good for 2 days in a row.  Doc was right.  15mg of steroid in the morning, then 10 mg of steroid at 2ish and I feel like a new man.  Can almost make me forget I am dying…. wait, nothing is going to make me forget that.  Can almost make me feel like I am not dying, there that is how it is.  Really wish there was a way to keep this feeling forever, but reality sets in my mind and I know this is just temporary.

I got 12-18 months to live by my best figuring.  6 months or so of Dr Alkhateeb playing Frankenstein with me (OK, I couldn’t come up with another monster created by a doctor).  Then 6 to 12 months (if I am lucky) to live out the rest of my life.  It sucks, but it is my reality.

In the mean time, I am getting in touch with local friends, doing lunches, getting addresses for my party invitations, just sitting and chatting.  I may not have a lot of local friends, but the ones I got are way cool peoples.

Lunch with Drew is tomorrow.  Lunch with Jon is Monday.  I hope to schedule a few more lunches in the next couple weeks.

I tell you what, its as easy to lose contact with local friends as it is to lose contact with far away friends.  Maybe even easier.  You begin to take local friends for granted, “they’ll always be here.”  It’s a shame.  I feel bad, but I do have more of an excuse than most people I guess.  I was laid up for 112 days at Mayo, no seeing anyone, away from home.  But nothing should have stopped me from reaching out after I got home, laziness is what I blame it on.

Also meanwhile, I am planning for my AINT DEAD YET Party.  Plans are moving along well.  Going to talk to the caterer of choice tomorrow, not book it yet, but get an idea of how much its gonna cost me.  Also going to put the deposit down on the American Legion Building.  Yup, things are in motion.


I should start selling my rare Magic the Gathering cards on Ebay.  It’s not like I am ever gonna use them again.  Yeah, that’s a definite idea, could make a couple grand off of the cards.  Money we could surely use.  And its either that or we give them to Bruce and Cori’s eldest (or is it 2nd) daughter who plays.  I got some really rare cards in my collection.


I was supposed to go get Saline today.  I chose not to.  Maybe Thursday.  I feel really good today, and I am drinking.  Probably won’t reach the goal but I’ll come closer than I have in recent history.  Getting better every day so we can do something about my situation.  I am tired of sitting here doing nothing, if Dr A wants to Frankenstein me, then let him get started.


Tonight is D&D night.  Yup, first they play ditch or ambush the bandits who are out looking for them.  Then they rescue the monk.  Then they will get into a big fight, which I will fudge to let them win.  Then I cant say what they should do cuz at least 1 of the players actually reads this.  Then they head back to the Hole.  Should occupy 2+ hours.  Yep, I am happy with where they are and whats going on.  I wouldn’t have called last week EPIC but I would have called it PRETTY GOOD.  I can stand with that.


Feeling good, making plans, it’s all good

I felt good today.  Really good.  Good enough to drive out to Bierman’s Furniture and sit with Drew and Nate for an hour and a half.  I don’t know why I feel so good, might be the steroids that Dr. A put me on that were supposed to make me feel better.  My food intake has went way up.  Yeah, buddy, food tastes good again.  My drinking is still somewhat under where it should be.  So tomorrow I will be going to Dr. Wehbe’s office and getting 2 Liters of Saline pumped into me.  But I’ll take that for sure.   Feeling better, sleeping less, eating like a normal human again, not being as fatigued, yeah, it’s all good.

Drew is buying lunch on Wednesday.  We are going to Big Al’s BBQ.  I need a catering menu and don’t want to drive all the way out there for no other reason.  So I asked Drew if he wanted to go and he was all for it.  I pick him up at 11:30, should only take 15 minutes or so to get to, then we get delicious bbq in an UGLY place.  Just have to remember to pick up the catering menu while I am there.

Then at 2, I am meeting Gordon at the American Legion Hall to give him some money to hold the Hall for the AINT DEAD YET PARTY on March 30th.  I get a tour of the place.  I have the strange feeling that if you’ve seen one American Legion Hall you have seen them all.  I remember the one from when I was a kid.  Looks the same in pictures.  It’s all good though, my party will be about 50 people, it holds 150, so no worry about overcrowding.

Thursday or Friday I will have lunch with Jon.  Another friend I haven’t seen in ages.  Need to get his snail mail address too.  Don’t know where we would go, but hopefully not the Americana again.  He’s buying though, so beggars can’t be too big of choosers.  Maybe I will ask him to meet me somewhere.   Yeah, that is an idea.  No reason to drive all the way downtown when I can just meet him somewhere more convenient.  HuHot perhaps?  I’ll have to think about it and call him tomorrow.



D&D is tomorrow night, hopefully the party listens to the DM and can rescue the Monk without getting into a big fight without the Monk.   It’ll be interesting to see what tactic they choose.  I’m not a betting man, but I foresee the death of a character tomorrow night.  Didn’t come close last week, so I oomfed the difficulty level a tad for this week especially since they will be adding the Monk.  Low level adventures kinda suck for DMs, you dont want to make them too tough, but you dont want to make them too easy either.  I think I have the difficulty set just perfect.  Assuming they dont do something dumb.

I enjoyed last week, even if nothing really got accomplished.  It was a learning experience for most of the players.   They come from roll20 and I teach them how to picture the events in their head.  Theatre of the Mind it’s called.  And it does take unique individuals to be able to play that style.  I think all of my players can do it, question is how well.  We shall see as the campaign goes on.


The D&D Party is balanced well.  The Celestial Warlock has done all the healing.  The healer is just cruising along wracking up kills.  The Barbarian is Barbarianing.  The Bard is new to the game.  And I know squat about the Monk player other than he seems a nice guy.  But the party will need the damage.



Look at that, a positive post.  Dare I say a Happy Post.  I feel good.  I got plans.   Everything is alright at the moment.  It’s all good.  Yeah man, It’s all good.


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.