Mayo, Pokémon, Teresa and Me

We got home from Mayo about an hour ago.  Tired, very very tired.  4 days of run here, run there, wait, run some more.  Every test that was promised happened except no Spinal Tap (darn) but definitely bone marrow biopsy #9 (with #10 scheduled already).  I managed to fail and unfailable test, I failed the renal exam cuz I could not pee on command and they were afraid to do the catheter thing cuz my platelets were so low.  So, we are heading back next Thursday for tests starting at 6:10am on Friday.  At least this time it is just 1 night and 1 day.  I am pretty sure after this week, next Friday will be a chump when it comes to the running we have to do.


Dr Alkhateeb made some points about my fatigue issues.  Like I shouldn’t really be having them.  So we are cutting Ambien completely, regardless of if I can sleep or not.  I am gonna be restarting my CPAP now that I google what I had wrong last time.  He also put me on a multi-vitamin do to my stomach surgery 24 years ago.  Also along with all this, I have to get up and move around more during the day.  Meaning a lot less napping for me.  The changes are not going to be easy, but heh, I can do it.  He said that he will not do the transplant if I am sleeping 12 hours a day, motivation enough.


Teresa has agreed to start doing stuff with me in the evenings (get your minds out of the gutter, or maybe it was just my mind).  We are gonna start walking or something like that, take the dogs out for evening strolls.  Something more than me walking back and forth in my house.


Weird thing, with the exception of the 9 day before transplant and the day of transplant, Mayo does its thing out patient.  Yup day 1 after transplant you are sent to stay in the transplant house.  You get up in the morning get blood drawn, then if you need blood products (hemoglobin or platelets) you go to the hospital and get it.  Otherwise you just go about your day at the transplant house.


Speaking of the transplant house.  It was everything we expected it to be.  No TV in the rooms was a little weird.  And eating only in the dining rooms was a little odd too.  But the place was meticulously clean and everyone seemed friendly.  So, even if it didn’t have a 30 dollar a night price tag, we would probably stay there.


My book was coming along well, til I determined that my fight scenes needed help, so another book was bought to read about writing fight scenes.  So, after I finish reading this new book, I will go tweak the fight scenes.  I tell ya, I am liking what I have written so far and I am by far my own worst critic.


You can tell the dogs missed us as much as we missed them.  Leaving them for however long is going to be hard.  Oh, I say however long because Teresa met some caretakers at the transplant house who were talking about being there for 100s of days one lady almost a year.  Gods I hope I don’t have to stay in Rochester for anywhere near that long.


I really should play some of my new games.  But I just haven’t felt like it.  I guess I just haven’t really been in a gaming mood.  That’ll hopefully be changing soon.


Oh yeah, DUH, the date of the transplant.  Still don’t have that as insurance now has 15 business days to approve it.  So we don’t start holding our breath yet.  The day is coming sooner as opposed to later.


We met more members of the TRANSPLANT TEAM while we were at Mayo.  Good thing we did, cuz now it makes a lot more sense.  We got a lot of questions answered and I feel pretty comfortable with the whole thing.


Dr Alkhateeb is very concerned with my bipolar.  On Friday along with some tests, I am meeting a Cancer Shrink.  Well, a psychiatrist who deals exclusively with people dealing with cancer.   I have no clue if she will know how to handle me, but we shall see.  They have also promised me talk therapy while I am being treated.  So, that is all set.


It figures that today, the day we left Rochester, was the first day where it was truly nice outside.  It was 50something, all the snow had melted.  It was a truly beautiful day.  The sun came out for the first time in our 4 day stay.  It’d been nicer if it had come out yesterday.


Oh yeah, we played Pokémon Go while we were in and around Mayo.  It was fun playing the game with Teresa.  We did some raiding, we gym battling, and a whole lot of catching.  Actually looking forward to going back just for the Pokémon, because now I am in the Pokémon rat hole of a town Adel.  Don’t get me wrong, I love our little town for a lot of reasons, but not because of it’s Pokémon craze.


Anyhow, I think I covered everything I wanted to cover tonight.  Thank you to my faithful readers, my fair-weathered readers, my new readers, my old readers, and anyone else who reads my ramble.  A little music to send you on your way…


Nobodies snows it better, and Great News

We made it to Rochester yesterday, it snowed the whole way… in APRIL.  The drive itself was uneventful other than we got an hour later start than we had attended.  I think that was mostly my fault, but hey, a guy needs to shave every now and then.  With the snow it took us about 3 hours and 45 minutes, about 15 minutes longer then normal.

The drive back is supposed to be in 50s and 60s when we get home.  Go figure.  I would say Spring is finally coming but it’s supposed to snow again here in Rochester over the weekend.


It’s cold here.  Not brutally cold, but cold enough to be annoying.  There is still a considerable amount of snow on the ground and a few slick spots.  But all that should melt by Thursday.


Today was my first day of “testing”, standard bio testing to check to make sure all the internals work.  21 vials of blood to see if a man can survive being drained of all of his blood.  Seriously, 21 vials is a lot of blood.  Student nurse took my blood, she had problems getting the blood into some of the vials and when she was done, she did something wrong and blood went everywhere.  Plus my platelets are very low (not infusion low, but very low) so I bled while she freaked out.  At least the full nurse had a clue what to do.  Also had a visit with a dentist who gave the ok to proceed.

The most interesting part of the day was finding out how much this transplant is supposed to cost…  $369,200.  Yup, that’s A LOT of money.  Luckily we only have to pay a small (relative) portion of that.  Thank the gods that Teresa has good insurance.  And for reference for those who knew me back in 2015, the leukemia treatment was only $112,000.


Oh yeah, my doctor for some reason unknowns to us, cancelled the SPINAL TAP.  So no hole in my back today.  But I still have the bone marrow biopsy #9 tomorrow morning bright an early.


We got back to the Gift-of-life house at 1:42pm and I was totally wiped out tired.  For someone use to sleeping 12 hours and then napping for 2 during the day it was rough to do today on less than 6 hours of sleep.  I called my mom.  I updated Facebook.  Then I tried to take a nap.  I think I succeeded to get about 15 minutes of sleep.  The strange place and the unusual bed just wouldn’t let me nap.  So I am really dragging hard at 7:44pm while writing this.


Heh, so tired I almost forgot to tell you all…  They got my a Donor.  He is a 19 year old guy from Germany.  Yup, they fly to Germany then fly back to the US to give me the donation same day.  Pretty impressive.   And this is the best news we have received since getting told I had AML again.


Potentially Thursday I will know when I am going into the hospital for the transplant.  We are hoping for a couple more weeks to get ready for this.  This is a big thing.  The biggest issue right now is that we have to get our dogs to my family.  There are other things we need to get ready too, but that is the big one.


But to be honest, I am anxious and anticipatory for this transplant.  Partially nervous out of my mind, partially can’t wait for it to get started.


No matter how this comes down, I will be in the Gift-of-Life House past my birthday.  When this started that wasn’t supposed to be.  BLAH.


I still won’t be in any shape to go to Thanksgivingfest or Thanksgiving with my family come November.  I will just bet too fatigued.


Since there is no TV allowed in the rooms of Gift-of-Life we are (well I am) listening to the Music Choice app’s 80s channel on my Ipad thru out Alexa (yes, we brought it along).


Here is a sample of what is playing on said channel


Too much Anxiety is not a good thing

Anxiety has been a total beast today.  To the point where it’s making me physically ill.  I’d puke if I was able to (long story as why I can’t puke).  I just want next week to be over.  24 tests of appointments in 4 days is a lot.  I think a normal person would be feeling some anxiety over this, and I am far from normal.  For the new readers, I am bipolar and have a plethora of anxiety disorders, this is a big deal for em.  Anyhow, I know it has to be done, so I will do it.  Anxiety be damned.  I took an extra clonazepam today which has helped a little but makes me so fricking drowsy.  Bad enough to have cancer fatigue but to add med fatigue to it, it’s being rough staying awake.


Teresa is going to Palmer’s Deli to pick up dinner.  I’m not a huge fan of theirs, but hey gotta let Teresa get the dinner choice win from time to time, right?  I am getting what they call a sub, which is hamg, turkey, salami, lettuce, tomatoes and red onions (I think that’s it.  I get it -red onion and plus mayonnaise.  Oh, it’s served on ciabatta bread, so it’s all good.  Plus is get a huge rice krispie block, so it can’t be all bad.  Might have ordered soup tonight but Teresa has to stop at the store tonight, so whatever we got had to be able to sit out in the 20something degree weather for the time she is at the store, so no soup.


Still very happy about the nothing necklace Teresa got my for our anniversary, sometimes soon I will post a picture.  Just being lazy about taking a picture right now.  I mentioned this necklace the other day.  A little history this time.  My original nothing necklace was bough around 1993 when I was buying accessories for my SCA garb.  I decided I liked it and began wearing it just about everywhere.  For years, if you saw me I had on my nothing necklace.  At the time the nothing necklace was a bronze ring on a leather necklace, Keria (my chow at the time) ate the leather, so it was replaced by a strap of lingerie.  I wore this for a long time, not quite sure why I took it off or subsequently it got lost.  But lost it is for now.  A lot of memories are attached to that necklace.  Mostly good ones.

Come our 25th Anniversary, Teresa went and bought me a solid silver nothing necklace.  Just a silver ring on a leather necklace.  Memories came flooding back, like I said mostly good ones.  It means so much to me.  I love her so much, I can’t love her more, but if I could I would for getting met his necklace.


Tomorrow I am gonna watch Supercard of Honor on the Honorclub by Ring of Honor.  Should be a really good show.  I am actually thinking I might be more looking forward to this wrestling PPV over Wrestlemaia on Sunday.

Sunday is the biggest card of the year for the WWE.  Unfortunately I won’t get to watch all of it live cuz even though my ipad has cellular, there are cellular dead spots on the way.  But they put it on the WWE network a couple days later, so its all good.


I had to bail on my first book attempt.  It was good while it last 7500+ pages, but it was too tough to write about Washington DC without having exacting knowledge of the area or at least having been there once.  So Bryan McKinley will never be there hero he deserves to be.

I know I said the Orcs, and Elves, and some such was BORING.  But hopefully my new book attempt won’t be rehashing what has already been hashed.  My new book, so far, is about an Orc who got knocked out and missed the whole battle.  I am only 750 pages into this one (having started it today while dealing with a lot of anxiety).  But it’s flowing pretty good in my opinion.  At this point I have no idea where he is going, but hey, he’ll tell his story.


The updated weather for our trip Sunday is the same as it was.  Snowy and Windy the whole way.  Gonna take us 5 hours I bet to do the 3 1/2 hour trip.  Not looking forward to the ride, so glad Teresa does the driving.  Did I mention that the Winds pick up the further north we get.  Yay rah.


I have 24 tests or appointment in 4 days next week.  A lot of rushed meetings.  But it’s all good, most are in the same buildings.  I am dreading the bone marrow biopsy #9 and the Spinal Tap the most.  I am curious to see what a cancer psychologist will have to say.  I still wonder what happens if I fail one of these tests, do they tell me No transplant and I am just doomed to die from AML?  Interesting question.


I haven’t played any games for a few weeks.  Just having felt like it.  I’m chatting with my bipolar buddies a lot more over at Edwinas.  And on Thursday nights I do my Acute Leukemia chat.  Sleeping a lot, so I get up and start writing or have lunch and then start writing.  Today was just weird cuz of the Anxiety.


Well, Teresa should be home soon, so I’ll go now.  Music this time….


The best anniversary gift ever

The trip up to Mayo on Sunday might be interesting.  Snow and wind are in the forecast for the whole way.  A lot of snow, and a lot of wind.  Here’s to hoping the do not close the 35 cuz its the only way we know to get there.  Yes, Waze will be more than happy to point us in another direction to get there.  But it’d just be easier to just get there the way we know.

12 things happening on Monday, its run run run all day long.  I was wrong about the bone marrow biopsy, it’s actually on Tuesday with another test and a class.  Another social worker visit of some form starts Wednesday off, then a couple more tests.  Finally on Friday 3 appointments including 1 with my actual transplant doc, and 1 more test.  Then we have to be up there a week from Friday and then again on May 3rd.  Why they couldn’t make all these appointments on the same visit is beyond me.

Don’t know what the trip back looks like yet.  Hoping it’ll look better than the trip up there does.  But with Mother Nature forgetting to turn on Spring ya never know.


One of the appointments is with a dentist. So maybe, just maybe, I can get my tooth fixed.


Anxiety is way up.  I don’t want Bone Marrow Biopsy #9 and Spinal Tap #1 or any of these tests.  But I will muddle thru and everything will be ok.


I started writing my book again.  Going a bit slower this time.  7500 pages in 3 days isn’t slow, but its slower than 21 pages in 4.  I really like the story, I like the characters, I like it all.  Most of all I am having fun and that is the most important part I think.  I’ll tell you a bit about it in my next blog post.


Teresa did give me a new upgraded “nothing necklace”.  The old one was brass, this one is solid silver.  Just a simple ring on 2 strips of leather with a clasp.  Nothing special to anyone but me and her, but some people might get a kick out of seeing it.


We didn’t do anything for her birthday or our anniversary.  I am too fatigued to do much nowadays.  And on her birthday I hate a terrible stomach pain.  Oh well, we got to spend them together.  That is the important part.


A really short post, not even music tonight.  Teresa has went to sleep and I am going to join her.  Have a good one.  Good morning (now its 12:06am) and may the gods watch over you.

PEACE

Apparently things start next Monday

Got a call from scheduling at Mayo.  Monday morning, bright and early, did I mention EARLY is when things start, I pick up my test schedule package and then meet my transplant coordinator (didn’t know I had a transplant coordinator, but it makes sense to have one).  After that I visit the dentist.  Then that afternoon my 9th Bone Marrow Biopsy.  Then I will be starving cuz I won’t have anything to eat after 7pm the night before.  This will be our first visit staying at the Gift-of-Life Transplant House (we were gonna try once before but Teresa had the flu).  A nice 4 night visit to get the feel of it.


Now I am having a little anxiety about this whole thing.  This transplant has become more real to me.  I guess it could be worse, they could say I was screwed and just gonna die.  At least the transplant gives me hope for some for of real life after it.


The 4 things I am most scared about for results of the transplant are:

  • Death, the obvious one.  It’s possible for the graph to totally be rejected and me to just die
  • Loss of who I am.  It’s possible to have a complete personality wipe, and a complete mind wipe.
  • Lungs Hardening.  Yeah, I was asthmatic as a kid, don’t want to go thru this crap again.
  • Blindness.  I am too old to learn brail.

Any of those things has a slight possibility of being an outcome of the transplant.  Scary stuff.  But in reality, the chance of any of those happening is very VERY slim.  Most likely I will have a little Graph vs Host Disease and then get on with life.


OK, enough about that.


I have finished reading a book on Dialog, a book on Plots and Structure, and finally a book of Characters and Point of View.  I feel much more educated on the art of writing.  I think I am ready to seriously tackle writing a book which is something I have wanted to do for years.

I started a book a week or so ago, got 21 pages down, but after reading 2 1/2 of those books, I realized that it was drek.  So I deleted what I wrote.  Now I am ready to start again.


Still bummed that I won’t be able to do Thanksgivingfest and the Thanksgiving  I had planned on doing this year.  I guess it is going to be me and Teresa and a turkey this year. Much like it was in our early years together.


Oh for those that haven’t heard, today is our 25th wedding anniversary.  25 years married and we are still happily together.


Another short blog.  Don’t have a lot to say right now.   Just wanting things to be done and over with if you get what I mean.

Well, things are finally gonna start moving

Finally spoke to Dr. Alkhateeb (yes, I called him, not overly impressed with his patient contact skills) about what is happening.  In the next week or so, I will be going to Mayo for pre-transplant testing.  Which includes, but is not limited to, yet another Bone Marrow Biopsy, a Spinal Tap, and various tests for kidney, liver, lungs and so forth.  Not looking forward to my 9th Bone Marrow Biopsy, he said there would be more after the transplant too.  I wonder what the record is?  Oh well, Spinal Tap is new to me, don’t know that I have ever had one, doesn’t sound enjoyable… maybe they’ll knock me out for it.  All my innards are good I think, so no worries there.  One way or the other the scheduling people should be calling to schedule all this stuff either still today or Monday. He said that insurance requires all the tests be done BEFORE giving final approval for the transplant (makes sense to me).  So let’s get the party started.


At least I get to spend Teresa’s birthday and our Anniversary with Teresa.  Things are getting started much slower than I figured they would, than Dr. Alkhateeb said they would.  But it’s all good, I get to be with my love on these special days.


I think we are going out to dinner on Sunday evening.  I think we are going out to dinner on Monday evening.  I guess that is the plan.  I figure Sunday evening will be packed wherever we go.  Monday will be busy, but not like Sunday.  I wonder where Teresa wants to go for her birthday?   And what should we do for our Anniversary?  Nothing like not planning until the last moment.


Stupid cough, need to talk to my Primary Care guy.   Yeah, this medicine is helping my blood pressure (from 150/105 to 120/85) but the cough is really annoying.  It’s not a bad cough, occasionally it knocks the wind out of me though.  Just a sucky cough.


At the rate things are going, I will be at the transplant house for my 100 days way past my birthday.  BOOOOOOOO for that.  I hate the thought of being laid up for my birthday.  The way Dr. Alkhateeb spoke, we might be looking May before the transplant which might very well put me in the transplant house til September.  YUCK.


This is gonna be a really short post.  I don’t have much to say, just a lot of thoughts in my head.


So Happy It’s Thursday

Still haven’t heard from Dr. Alkhateeb, he said he’d call me this week, wasn’t expecting to hear from him until Friday anyway.  This whole getting ready for a transplant has been a whole lot of waiting.  And I really hate waiting.  Anyhow, I am under the assumption that tomorrow (if) when he calls he will have all the steps laid out.  We got a lot to do before the transplant and it’d be nice to know when things are going to happen.  It will also be nice to know the status on my would be donors.  It’d be nice to know that one of them has agreed to be my donor and it is all set up.  Realistically Teresa and I are both in agreement that Dr. Alkhateeb probably still doesn’t know.  I hope we are wrong.  Anyhow, it’ll still be great to have things in motion.


I chose to cancel my water delivery service this delivery cycle.  I have the feeling that we aren’t going to be available to cancel it for the next service date.  Teresa thought I should keep it going, I just don’t want to have the hassle of having to remember it while all the transplant stuff potentially could be going on.


I am feeling pretty good except for the cough I got from my new blood pressure medicine.  Now I have the question, since the blood pressure medicine is working so well, do I just live with the cough?  Right now I decided yes.


Tonight we are making homemade pizza.  Pineapple Ham, Pepperoni, and Green Pepper. Teresa really knows how to make the pizza just perfectly.  Have I mentioned how wonderful it is being married to an excellent cook?


Thanks to my friend Caly I got a book called Dazzling Dialogue.  It’s a book that tells me everything I was doing wrong with my dialog I was writing.  And then it shows examples of how to do it right.  Right on, that is exactly what I needed.  And for 3.99 the kindle version works just fine.  I may just end up buying a few more of the author’s books on writing.  He has covered a lot of topics that I think would help me write a better book.  I got up to page 22 and then started reading the Dazzling Dialogue book and realized just how bad my writing was.  Other books might just be what I need.  Who knows.  But at 3.99 I can afford to buy a couple.


The fatigue is unreal.  I go to bed at 11pm and wake up at 11am.  Then take a nap in the afternoon for 2 or 3 hours.  Then it repeats day after day.  It’s 12:47pm now and I am thinking a nap would be good right now.  When I am not sleeping, I am so drained that I can’t do much.  Frustrating.


I downloaded EVE Online again with hopes to play it.  I played it once before several years ago, I remember it to be kinda fun but difficult.  I think this time I will read the forums on how to get started and maybe it won’t be as hard.  EVE is a space game, you fly your ship around and do stuff.  It’s an MMO, but not an MMORPG, I have no interest in an MMORPG right now.  Still burned out after WoW.


Speaking of World of Warcraft, Teresa was invited into the Alpha of the next expansion but I don’t think she is gonna accept it.  We got too much going on right now to give an Alpha run a worthy go.  As a matter of fact, since she got the alpha invite I don’t think she has touched WoW.  She goes thru cycles where she plays every night and then doesn’t touch it for a  week or so.


Heh, REO Speedwagon is coming to Prairie Meadows Casino in October.  I was thinking it might be a nice night out after I have recovered.  I should be good for a few hours out by mid-October.  Well, I look at prices, 156 bucks for the floor seats.  I was floored alright, dang c’mon, REO is a great bad but they haven’t really been current for 20+ years.  It looks like I won’t be seeing REO Speedwagon in October.


Teresa wants to go to the movies on her Birthday.  Which happens to be Easter Sunday and April Fool’s Day.  1.  I hate crowds.  The place is going to be packed.  2.  I don’t care to see Ready Player One.  The movie looks cableworthy. BUT 3.  I really love my wife and if she wants to go, we will go.  The other option is Red Boxing Star Wars the Last Jedi and staying in to watch that.  I am much more in support of that choice.  Either way, it’s all good, I’ll spend the day with the love of my life.  Her birthday present doesn’t get released until the 20th.


I never did find a dentist who could get me in while my platelets were up.  So while everyone is praying and sending good thoughts.  Please add a little addendum that my tooth doesn’t abscess when I have zero white blood cells.   Thanks in advance.


When I get back from Mayo, I may be looking for a new shrink.  I love Dr. Fialkov, but only having 1 day a month that I can see him is really inconvenient.  And having to call the secretary lady and hope she can get ahold of Dr. F if I need something is getting old.  So, I just might go in search of a new shrink.  I assume that while I am up at Mayo that they will keep the same meds going into me and I won’t have to see a shrink.


Yup, definitely going to take a nap.