I will be okay, just not for a while.

Well, I will be getting a bone marrow/stem cell transplant in the near future.  The doc’s at Mayo are stumped as to what blood cancer I have now, but I have one that will kill me if I do not get this transplant.  The transplant doctor says it will happen in 6 to 8 weeks.  The blood doctors say I may need chemo before I can have the transplant so I have no clue as to if the 6 to 8 weeks is realistic.  I have the feeling that doctor A hasn’t spoken about it to doctor S.  Makes me think the “team” isn’t all on the field yet.


Yes, you read that right, I have a blood cancer that they can’t name.  It’s kinda like MDS and kinda like AML, but in it’s current state it is neither.  One doctor said I was unique.  I asked him if he meant weird.  He nodded.  We joked, we laughed, but this it serious.  If I don’t get a transfer I probably won’t live to see Christmas.


Mayo was much nice this time.  Even the big blood draw waiting room was pretty empty the 3 times I went there in 2 days.  22 vials of blood in 24 hours.  LOL, Vampires.  I have 1 good vein after chemo in 2015.  That vein looks like a pin cushion.  Actually the little red dots look like I got chiggers.  lol.


On the 3rd day, I got a bone marrow biopsy.  That makes 9 bone marrow biopsies in my life time so far.  A few more to go before I die I am sure.   Mayo gives you the option of being knocked out of it.  I took that option and blissfully slept through the procedure.  Weird that they do it on your side and hook you to oxygen, but hey, I didn’t have to feel the pressure or here the doctor grunt as the device used to collect the sample hits the bone.  It really doesn’t ache as much as the other ones did either.  I think I want all my bone marrow biopsies to be given by them for now on.


We found an incredible pizza place right near the hotel we were in.  It was New York style pizza, calzones, and Stromboli.  I just have to say if you are in Rochester and you like pizza, let me know and I will ask my wife what the name of the place was (I forget).  The food was incredible.


We also found the place we will be staying at for all the transplant visits up there.  The Gift-of-Life Transplant House is a non-profit house for people getting transplants and their caregivers.  You get a private room with its own bathroom in a large house just a couple blocks from the front entrance to Mayo.  They actually have 2 houses, at total of about 80 rooms I believe.  They only charge transplant patients 30 dollars a night and when I am looking at 100 nights after the transplant 3000 doesn’t sound nearly as bad as 9 or 10 thousand for a hotel.  Insurance will reimburse us the whole 3000, so it’s all good.


I know I should feel upset or scared or something, but I really feel pretty good about the whole transplant idea.  A little overwhelmed by it all, but nothing negative about it.  I heard what the doctors had to say, processed it as best as I could, and came to the conclusion that a transplant is what I need and there is no reason to worry about it now.  Maybe in 5 to 7 weeks (transplant is supposed to happen in 6 to 8 weeks) I will start worrying, right now we (Teresa and I) are trying to get things lined up for us to be gone as much as we are gonna be gone (especially the 100 days).


Teresa isn’t going to be able to work while I am recovering (those 100 days I keep talking about).  That is going to hurt us financially really bad, really really bad.  I don’t know how we are going to afford all the outpatient stuff the doctors told us about.  It’s going to be brutal on us.  We’ll figure something out.


This is gonna ruin on Teresa’s 45th Birthday and our 25th Anniversary.  Just sucks that this is all happening when it is.  I had such cool plans that are out the window now.  I have no idea what I will be able to do for those 2 important dates.   Speaking of important dates, I am also still gonna be laid up for my brother’s 50th Birthday party. DOH.  I really wanted to be there for him.


Speaking of my brother, he is trying to be the donor for my transplant.  He was originally told her couldn’t, but as my transplant doctor called it, that is hogwash.  So he is now waiting for the testing kit.  Hopefully he gets that on Monday and then gets it back to Mayo by Wednesday.  Then we would know.  Right now the not knowing is annoying.  Also annoying is that there is only a 25% chance he will be a match for me 😦   If he isn’t a match, we have to use the registry.  The registry in 2015 cost us 3600 dollars (insurance does not cover the search) so I figure in 2018 it’s cost will be well over 4000 dollars.  So I really hope my brother is a match.


I made a deal with Teresa, one that I totally intend to keep.  When this is all said and done and the doctor releases me to go take on the world again.  I will not go manic, I will not try to work, I will not try to go to school.  I will accept that I am a disabled dude and go back to sitting on my butt.  Now, this is going to be tough for me, I have no control over if/when I go manic.  But I think I have come to the conclusion in life that I have accepted that I will never work or go to school again.  Hopefully, when I get the green light to live my life that I fall back on the no work no school routine.


2018 is gonna suck, hopefully not as bad as 2015, but it is going to suck.


this video/song was picked by Teresa.

Written during a slight sugar high.

Tomorrow starts round 2 at Mayo Clinic.  Blood test at 4 and a different blood test at 4:40.  Weird that they couldn’t do them at the same time, but hey, I’m just a patient, so who I am to think it’s weird?  Then we have an early morning on Wednesday.  And 3 appointments on Wednesday, the transplant team, the social worker, and then Dr. Shin (the doctor I didn’t like at first, but do like now).  The transplant team is the ones who decide if I am to stay there for longer then 1 night.  I really only feel like being there 1 night, but it’s all good.  If they want me there longer, I will stay longer.  It’s all for the goal of having working bone marrow again.


Went and had a blood test today and they determined my platelets are 39.  I think there was a mistake made.  I have fairly wicked petechial bruising.   Petechial Bruising happens normally when your platelets are below 20.  It’s not the first time that I have had a strange platelet number and then the next one is vastly different and much lower.  I guess we will know tomorrow or probably Wednesday rather.  I don’t really want to have to get an infusion while at Mayo, but if I have to I have to.


I will start packing here in a couple hours.  Right now I am debating between playing Skyrim or taking a nap.  I am thinking Skyrim right now cuz I just ate 3 donuts and am feeling a slight sugar high, so I doubt I could nap right away.  Packing for a week, that means breaking out the big suitcase.


Tomorrow morning the dogs go to the Vet/Boarding place.  They both need some vet stuff, so we just said do it to them while they are there being boarded.  Then we don’t have to worry about it when we get back.  Mojo is gonna howl while neither of us are around to comfort him.  This is gonna be traumatizing for him I think.  Pucky is so easy going, the vet techs all love him.  He will be fine, but poor Mojo, he doesn’t like not being with Teresa or myself.


We are set to leave at 11am to get up there around 3.  Giving us a lunch break during the drive.  Like I said, I have labs at 4, so getting there at 3 will give us a chance to get checked into the hotel and walk to the blood draw place.  If you have never been to Rochester, there is a sprawling underground walkway connecting hotels, restaurants, medical places, and shopping.  It’s all well lit, patrolled, and climate controlled.  It’s nice.  So we check in around 3, get settles a bit,  and then hot foot it over to the Hilton building and check in to get blood drawn… twice.


Was worried that the hospital was far away.  We checked that map and it’s actually closer than Mayo Clinic is.   So, since Mayo Clinic was only a 10 minute walk, I am guessing the hospital is less than 5.  But I will be there early for every appointment, it’s just how I like to be.


Like I said earlier, the transplant team is going to decide if I stay a week or just a night.  Teresa is all set to stay a night, but she is unsure about staying longer.  I may be alone up there for a few days.  No big deal.  If I end up being alone I will move into a cheaper room and go about my days as dictated by the transplant team.   Then Teresa would come and pick me up when they are done with me (for now).


My mom wants to be there “the whole time” I am hospitalized getting chemo.  I am not sure I want her there all that time.  I love my mom dearly.  Just when I am getting chemo and dealing with all that entails, I would rather it be just Teresa.  Besides, Teresa plans to stay with me (sleeping in a chair or such).  Mom would have to get a hotel room and rooms in Rochester go from kinda expensive to OMG expensive.  Rochester adds a 17% tax on hotel rooms too.  So, I am not sure my mom can afford to bet there “the whole time:”  But I am not gonna tell her NO if she wants to come.


OK, enough talking about Mayo.


My brother has some plan to make a lot of money he says.  I don’t know what he is doing.  But he built a computer he calls the Beast.   It’s supposed to be a mining rig for cryptocurrency of some kind.  I haven’t followed too close as I have health issues to occupy my time and mind.  But I really hope it works for him as he thinks it will.  Someone in our family need a big break.


A bit about Skyrim.  I mentioned a few weeks back that I had a character I was gonna play to level 50.  Well, that character didn’t last.  I have new hope for the one I am playing now.  A redguard, warrior/mage.  She is a real monster now.  Has a max enchanted scimitar with CHAOS enchant.  This give a 50% change on every hit to do an extra 50 points of Fire, Frost, and/or Shock damage.  So she basically hits for base 35 points and can count of at least 50 but up to 150 bonus points of damage.   She is one shoting most things, occasionally has to hit twice the tougher guys.  I am having fun with her.

By the way, if you are playing Skyrim and want to get the CHAOS enchantment.  It’s on Solsteim, go to the farm due south of Raven Rock, save the Captain from the 3  Ash Spawns.  Loot the spawns and you get a  declaration of war for a 200 year old Imperial officer at a nearby fort.  Show the note to the captain and agree to go to the fort.  At the fort, fight a lot of Ashe Spawns.  Eventually find your way to fight the big bad guy and a bunch of ash spawns.  The Big Bad Officer guy drops a Champions Cudgel.  The Cudgel has the CHAOS enchant on it.   Take it back to a enchanting place, and proceed to disenchant the cudgel and then cast it on your weapon of choice.   WARNING.  The battle with the BIG BADDY is really tough.  But this enchant is VERY worth it.


MUSIC


Medical and Mayo… oh my

So, I was feeling sickly earlier today, thought maybe my platelets were low enough to need a infusion (13 or lower).  They were 17 today.  The nurse lady said to come back Monday and get checked again.  Problem is if I am checked on Monday, I probably won’t be able to get platelets until Tuesday…. and Tuesday we are heading to Mayo.  There are bunch of if/then statements coming so hold on.  If I get in early morning Monday to get my blood drawn, then I could potentially get platelets late Monday afternoon.  If I don’t get in to get my blood checked until late Monday, then I could possibly get platelets early Tuesday morning and just be groggier than crap the whole drive up (Benadryl before platelets).  If I blow off getting checked on Monday, then Mayo will have to deal with me on Tuesday/Wednesday, but I run the risk of going WAY too low and potentially having serious problems or even death.  So waiting for Mayo to take care of me is kind of off the table at this time.

Dr. Wehbe, my local cancer doc told me (and Teresa) that we could just stop in for a blood test whenever we deemed it necessary.  Today I was informed by a nurse that THAT is not how they work.  She said that I needed to make an appointment and see a nurse and that is how it always works.  Well, given a choice, I’d default to Wehbe’s way over the nurse’s way, much easier on us.  So, I appealed to a higher source, I appealed to Wehbe’s #1 nurse.  Kerry has always been square with us, straight up, this is how it is.  Gonna find out who is right and then when Wehbe is wrong, try to make an appointment for first thing Monday morning to get labs done and see a nurse.  The whole part of just stopping in for lab work was to avoid the copay.  50 bucks is a significant amount to be told, come back next week.  So Wehbe was doing us a solid by telling us to come when we want and just get labs.  Oh well, we shall see when Kerry replies back to my email.


Mayo visit #2 is less than 1 week away.  Labs on Tuesday, then meetings all day Wednesday.  That is all that is in concrete.  At this point, all I do know (according to Dr. Shin, my hematologist/oncologist at Mayo) the transplant team will ask me a bunch of questions to determine if I am worthy of a transplant.  I don’t smoke, I don’t drink, I don’t do illicit drugs, heck, I don’t even cuss that much.  Yeah, I am disabled, but turn me down for that and watch me sue their butts for discriminating against a disabled person.  I am a good person, so this should be a no brainer for them.   I have about 100 questions for them though.  Most I am sure they will answer during the description of what they are going to do (the pre transplant, transplant, and post transplant plans).  But some I think are intelligent questions that will need to be asked.  These guys will also determine if Mayo visit #2 is overnight or a week long or so.  (again according to Dr. Shin) There are a bunch of tests the run over several days.  We can handle either way, it’s all good.

Have a meeting with a social worker on Wednesday afternoon.  Not quite sure what she is going to do for us.  But we will go to that meeting and talk to her about whatever she wants to talk about.  I’m sure it’s just standard procedure that EVERYBODY going thru this type of transplant talks to a social worker.   I hope that is the case.

Then after the social worker, I get to see Dr. Shin again.  Not sure why I am seeing him again.  He is not part of the transplant team as far as I know.  I guess he wants us to know that he is still technically the man in charge of my treatment.  I will give him props for ordering my last biopsy sample and running the genetic stuff on it and finding the genetic markers.  Well, he ordered the sample and had someone else run the test and find the results, but it was his idea, so kudos to him.  We will go to see him with no reservation but I might ask not to have Dr. Pirralta involved, I just didn’t like that man, and he is the top dog, head cheese, man in charge of the department.   If Dr. Shin can’t act without Dr. Pirralta’s ok, then I guess I will let him be involved.


I’m hoping in the testing they do not have to do yet another bone marrow biopsy.  My poor hip bone has enough holes in it.  I have had 7 or 8 total since April 2015.  Had one as recent as December 8th.  I just don’t think it’s necessary again.


I forgot to call the vet today, wait, its early still got time.  I need to make sure they will have room for Pucky and Mojo should we have to stay a week in Rochester.  This is part of what sucks in not knowing how long we are gonna be up there.


I’m hoping the weather doesn’t suck up there.  It’s been a mostly mild winter so far in Iowa, hoping that Minnesota didn’t get all the crap that should have hit us.  That would make our trip miserable.  But the good news is, I know there is a delivery place that charges 6.95 plus tip to deliver from a large number of restaurants in the area.  My mom and I used it both nights we were up there before.  Just makes dinner really convenient.


Yay, Kerry emailed back, Dr. Wehbe’s way is correct.  The nurse is wrong.  The lab just has to send the results to Dr. Wehbe wherever he is.  Should be a no brainer for everyone involved.


My Theme Song


One night or One week… ugh

Bah! I won’t find out how long this visit is until I get there.  I finally got ahold of Dr. Shin and he said it’s up to the transplant team.  If they deem me a good candidate for transplant (which I thought I already was or I wouldn’t be running back up to Mayo) there will be several days of testing.  Well, that just kinda sucks, not knowing.  Dr. Shin recommended packing for a week and that is exactly what I am going to do.  I just don’t think it’s right that my Doctor is out of the loop as to if I am going to get a transplant.  It was his (well his pathologist’s) discovery that I have that stupid genetic marker, he should be included in the whole thing I would think.  But hey, who am I?  Just the patient.


I haven’t used my cpap in many months.  Yeah, bad me.  Around Christmas time I ordered a SoClean 2 to keep my cpap clean.  I had issues cleaning it good enough to not cause me to develop a chronic cough.  So, the SoClean is supposed to fix that.  So, I finally am getting around to giving all the pieces of the cpap machine a good cleaning and hooking up the SoClean.  It will be good to start sleeping well thru the night again.


Once again Teresa’s work is being incredible about my health/hospital issues.  They are gonna let Teresa work from hotel and hospital rooms.  This is very much against company policy in general.  Company policy is that an employee must work from the office to get paid.  I know this is extenuating circumstances, but they could be total jerks about it, instead they are like do what you need to and take care of Jeff.  That’s just cool of them if you ask me.


Tomorrow I have to call the Vet/Boarding Place for the dogs and turn my 1 night confirmed into possibly a week.  22 dollars a day per dog.  So 44 dollars a night for my doggies to be boarded, that doesn’t sound too bad.  I hope they have space for them for the potential week.  They just added a huge addition for boarding animals, so I assume it’ll be no problem.


I don’t think (I hope it isn’t) it will be a problem with the hotel.  It’s not the cheapest or the best, but it is pretty big.  So I figure they will have some place to put us if we have to stay longer.


I was thinking of not taking my laptop on this visit.  Cuz it was only 1 night, and I can be laptopless for 1 night.  Now with the potential of it being longer, I am definitely taking it with.


I tried playing Civ6 today.  Everything I dislike about the Civ series is present and then add a few more things I don’t like, then you have Civ6.  I read great reviews about it.  I thought I’d like it, but no, I think it requires more thought than I am willing to give at this time.  Maybe if I didn’t have all this crap hanging over me I would like it.  But right now, I don’t, oh well.


I know I bashed on parts of Skyrim yesterday.  Well, it’s still my go to game when I think I want to play a game.  I’m starting over again and again though, never getting much past level 20something, then new character.  Like I said my highest level character (which got deleted by accident) was 42.  Current high level is 32, and Orc Warrior who is learning to cast Destruction Magicka.  If I was his follower, I would be pissed that big bad Warrior is now casting baby fire spells when they wade into battle.  LOL.  Anyhow, the Orc is on hiatus and I am back to trying to find a Thief/Archer build that I like.  So far, I have let the thief part slide while making pure archers, so not what I am looking for.  I’ll figure out the proper mix of skills yet.


Civ4 Warlords still holds a special place in my gaming heart.  I will always ALWAYS play that when I want to just kill time and not think to hard.  But after all these thousands of hours playing it, I have never won a conquest victory without the use of nukes.  I find that unacceptable.  I know it can be done, I have come close a few times, then had some mishap happen that pissed me off and I quit (underdefending my home cities is biggest thing I am guilty of).  Maybe I will play it again tonight and try again to win without nukes.  I am kinda feeling the need to take a break from Skyrim.


Praying people and people who send good thoughts, please keep me in mind when you are doing so.  I can use all the help I can get to get thru all that the near future is giving me.  I’m not scared as I go into this, but I am hoping for a better year than 2015 was as far as in the hospital getting chemo goes.  So, thanks in advance for the prayers and good thoughts.


More questions than answers

As the day draws closers, we don’t know if they are going to make me stay in the hospital on that day or another day.  Going to call the doctor at Mayo tomorrow and ask.  If they are going to put me in the hospital on the 31st it would be good to know.  We figured that they would have told me before this if it was to be, but since I only talked to a doctor and a secretary, they might have thought the other told me so.  So, a phone call is in order.

I don’t want to go in on January 31st or the very beginning of February without some notice.  I doubt anyone would want to go in without knowing ahead of time.  I could be wrong though, it could be assumed since I am meeting with the transplant team and my doctor that maybe just maybe they are going to put me in the hospital really quick.


I still don’t really know how I feel about this who stem cell transplant situation.  It’s just an event that is going to happen in my life.  Just another thing to add to my long list of medical things that have happened to me in my not so long life.

I am not looking forward to chemo again, I know that.  I’m a little weirded out by the thought of radiation.  (Good thing I already was unable to have children, eh?)  I do believe both of these things are used to totally wipe out my bone marrow.  Oh, in case I haven’t mentioned it.  Bone Marrow Transplant = Stem Cell Transplant, same thing.


Teresa got the 30th and 31st off to be with me at Mayo.  I asked her to get those days off so she can ask her questions and hear all the answers first hand.  I don’t want her to not know something that I forgot to tell her.  Been there, done that, and it always turns out with me feeling like an idiot.


An old friend of mine reappeared on Facebook.  He doesn’t know about the MDS, the genetic issue, the transplant coming up, anything.  Heck he doesn’t even know about my platelets going screwy in the first place.   He’s in for a shock (if he chooses not to read this) when my wife ends up posting for me cuz I am too sick from the chemo to post.  My long time Facebook friends probably remember those days from AML chemo.


I already miss my D&D games.  They were helping me keep sane and be social.  But I had to cut them loose cuz I won’t be able to game while in the hospital.  And there was no since in continuing them up until the day I go in, that’d just make me feel worse about stopping the game I was running.  And make me feel worse about bailing on the Friday night game when they got closer to the goal.  Yeah, it was better to cancel now I think.


Oh, I do hope to keep my WordPress readers informed of what is happening as best as I can while in chemo.  But I am sure there will be a point where I will be unable to and my wife will not know how to write this blog.  Even though it’s painfully easy, click the Blog button on the favorites bar and then click write, then write, the click Publish.  Not rocket science, but I think it’d be too much to ask her to write here and Facebook.


Teresa forgot to feed the dogs earlier tonight til just now (supposed to be 7:30, it’s 10pm now).  Pucky got it and got to eating.  Mojo didn’t understand and just wanted the new treats that my wife made for them.  It took 3 runs around the bed and then basically slapping the bowl down in front of him with the command to eat.  It was funny.


I haven’t been sleeping well lately.  Nightmares which I attribute to stress that I don’t acknowledge.  I mean, I don’t feel stressed about anything, but I am sure it’s there and manifesting itself into Nightmares.  Not a pleasant way to wake up every could hours.


Been playing a lot of Skyrim lately.  Highest level so far is 40 then I get bored with the character.  I really hate most of the Dawnguard expansion, and most of the Dragonborn expansion.  LOL.  They could have cut a lot out of both of those and merged them together and made 1 really killer downloadable expansion.  But I think there are others who really like them the way they are, so I won’t bag too hard on them.  Dawnguard can go without the whole Forgotten Valley bit (I forget the actual name of the Valley, but it’s like a bajillion hours of running around to collect water to get to the main bad guy, who is a chump if you have the right build.  Dragonborn is just weird, the whole weird world you walk thru with the papers could have been cut and I wouldn’t have missed it.  Just let me at the big bad guy who is also a chump if you have the right build or the right amount of healing potions.  Don’t get me wrong though,  Skyrim is a great game, even with the parts I don’t care for.  I am so glad I bought it last year as a Christmas present for myself.


Part of me is actually looking forward to the hospital stay, where I don’t have to think about anything.  All I have to worry about is going to the restroom, and keeping myself entertained (computer, TV, talking to wife, etc.).  The rest of everything is pretty much taken care of by nurses and aides.  Yup, hospitals are a lazy person’s dream place if you didn’t have to be really sick to be in it.


I’m upset that I am going to miss my brother’s 50th Birthday party.  I know I am going to be in no shape to travel then.  My September plans might be out too.  I am hoping to still make it Thanksgivingfest and Thanksgiving in November.  I’ll have to ask about recovery time after the transplant, realistically will I be able to travel this year?


That’s it for tonight,  oh yeah, Cori gets mad if I don’t include music that she can comment on… so hang on….


ok, maybe I feel something about all this.

Well, I was wrong about needing a platelet infusion this week, my platelets were at 24.  This means next Thursday they will be low enough for an infusion that will carry me to and thru Mayo Clinic on the 30th.  It’s all good, Dr. Shin knows I am getting infusions when I need them.  It’s also, not like every time I need an infusion I am gonna run up to Mayo to get it.  Dr. Shin and the team up at Mayo will have to work with Dr. Wehbe down here.  Dr. Wehbe has already agreed to do whatever is asked by Mayo, and I am sure that is gonna be keep me alive between chemo runs.


I spent a good portion of yesterday trying to find a review of the hospital food at Mayo.  I can find tons of info saying they have food (duh) but seems that no one cared enough to say if their patient food is good or bad or just exists.  I’m gonna guess that it’s ok cuz Mayo is #1 in the nation and patient satisfaction is a big key in the rankings and the food is definitely a part of patient satisfaction.


I brushed a hot grill in the oven with 2 of my fingers on Monday, they blistered later that day, the popped overnight, and they have hurt continually during this whole process.  I don’t think they are infected, but they are inflamed, puffy and red around where the blisters popped.  Very painful, I will endeavor to never brush up against a 450 degree hot grill again.


I still don’t know how I am feeling about this whole transplant thing.  I still believe that I should be feeling something… Maybe I will when it becomes more real.  Still about two weeks away from talking to the transplant team, then maybe it will spark am emotion or two about it.


I still can’t believe (or don’t want to believe) that I am willingly gonna go thru chemo treatment again.  I do not have any details on how long it will take or anything.  But from what I have been told by someone who just went thru a bone marrow/stem cell transplant at Mayo, that it’s a couple months of chemo followed by radiation… totally killing my bone marrow so the new bone marrow has a place to be.  That seems really cool to me.  Supposedly, I will be conscious and able to watch the new stem cells being pumped in.  Looking forward to seeing that.


I am feeling pretty rotten about having to cancel my D&D game and leave the Friday night D&D game.  Everyone has been cool about it.  But dang it, I was having fun and so was everyone else.  We had just gotten started on both games really, and now I had to bail on them.


Tonight is Acute Leukemia chat.  I hope that a few of the regulars are there.  I want to let them all know what is going on.  They have been great support thru all this MDS bull crap, and they will be really supportive now that I am going for a transplant.  I wonder if I can still say I didn’t get a transplant cuz of leukemia?   I mean, I got the MDS because of the leukemia, but I am getting the transplant cuz of the MDS.  In reality, according to Dr. Shin, I should have had the transplant during leukemia in all likelihood.


Well, I know with the medical crap going on, our cruise is put on indefinite hold.  All the money that we had set aside for a vacation will be going to medical care.  Sucks, but that’s the reality.


I figure I am going to be in the hospital for my wife’s birthday and our 25th anniversary. That truly sucks.  I wanted to do something really nice for her and instead she will be sitting next to me in the hospital.  Man, the timing of this sucks.  I wonder if I can put off the transplant until after April 2nd?  I’m serious, they can keep me alive indefinitely with timely platelet transfusions.  Can we put off the whole thing until after her birthday on April 1 and our anniversary on April 2?  I’ll run it by Teresa and then if she thinks it’s doable, I will run it by the transplant team and Dr. Shin.


I’m glad my meds keep me happily mellow, cuz otherwise I’d probably be falling apart.


Be careful of what you wish for…

My new therapist is a cool older lady.  Yeah, I said I didn’t want an old lady as a therapist, but Suzi turned out to be surprisingly great.  She was flabbergasted when I told her the reason I am seeing her is so I can see the doctor.  She thought that was the stupidest thing and so do I.  But it’s required that I see a therapist at least once every 3 months in order to see my shrink.  Suzi and I talked about Mayo and how I should be feeling about everything, but we came to the conclusion that I am feeling nothing cuz there are too many emotions running thru my head and my mind can’t process them all, so it chose to process none.  I can agree with that I guess.  I won’t see her again probably until AFTER my transplant.  Maybe then I will have something to talk about with a therapist, instead of spending 40-60 minutes shooting the proverbial shit.


I am thinking I am gonna have to cancel my D&D game and drop out of the Friday night one.  Not going to be able to play while I am in the hospital, not going to want to think when I am home between hospital visits.  So that kinda rules out playing D&D, which is a big bummer.  I am sure everyone will understand.  All of the players are friends now (even the new ones).


I wish the appointments at Mayo were sooner than the 30th and 31st.  The wait is going to drive me nuts.  I hate waiting for things like this.   But it’s less than 2 weeks, I guess I can survive that long.   I have a list of about 30 questions for the transplant team, I figure they will answer most of them during their presentation.  And then the will answer the ones they don’t answer.  Then I got about 20 questions for Dr. Shin when I see him again.  I have an appointment with him after I see the transplant team and a social worker (which I do not need).   On second exposure, I liked Dr. Shin, it’s the head honcho of the department I really didn’t like.  Anyhow, I am sure I will see both of the Doctors on the 31st.


Teresa is really worried about this (rightfully so).  Last time I nearly died during induction.  That put the fear into her and made me mortality a very big reality for her.  So, she is thinking this is going to be the same.  Gods, I hope it’s not.  I wouldn’t mind an uneventful chemo run.  At this point, if I started thinking things were going to be the same I would be freaking out.  Instead I am gonna just be mellow about it until (or if) something happens that warrants freaking out.  Teresa can be worries for the both of us.  I can’t waster the energy on being worries on worst case scenarios.


Heh, I wanted some time away from Iowa…  I should be careful what I wish for as I am gonna get it…  A hospital in Minnesota, not a vacation hot spot.


Tomorrow I go get a blood test to see if I need a platelet infusion.  The petechial bruising is getting pretty bad on my arms and it started showing about a week ago.  So it’s time to go get a blood test.  I think I will have an infusion on Friday,  Teresa is betting on Monday.   Either way, we both agree that an infusion is going to happen in the very near future


Heh, yesterday I wrote my post really early in the morning.  Teresa and I had rebooted the cable modem a couple times to no avail.  She wanted to check something and couldn’t.  10 minutes after she left, the lights all turned green and things were fine.  Yup, weird timing.


I’m glad I am getting everything in order for the short visit up at Mayo.  And then also thinking the long term visits when I go up for the chemo before the transplant and for the transplant itself and recovery time after.   I believe Teresa has arranged for my Mother-in-law to come and take care of Pucky and Mojo.  My mom says she is coming up for the entire time I am hospitalized, we’ll see how that goes.  Teresa plans on staying with me at the hospital.   I hope they allow that at Mayo.


Really I am just hoping that when this is all said and done and the transplant is over.  I am hoping that my life will finally be able to get back to the normal it was before this all began back on April 1, 2015.  I know that’s a big dream, but it’s my dream and I will hold on to it until proven wrong.


This song has been running thru my head… sorry if it offends anyone.