At least I feel pretty good…

We are slowly gathering the stuff we are going to need during the 100+ days we will be in Rochester after my transplant.  It’s a long list and luckily we have some time.  Teresa has decided she is taking her MAC with her when we go.  I don’t blame her, she needs an outlet to get away some too.  I, of course, will have my laptop which runs Skyrim which is all I will need in that arena.

It still seems surreal.  Can’t completely get my mind around having to stay up there for 3 months.  At least it’ll be during the spring and I am sure Rochester will be lovely.  It’s just that last time between hospital visits, I got to come home.  This time, home will be far away.

Oh yeah, for anyone who cares, , I started a gofundme to try to get some help.  I feel like a total jerk asking friends and family and complete strangers for money.  But as I said yesterday, we are not going to be able to make it on what we have saved.  So, we gotta do what we gotta do.

We are hoping NOT to be called up to Mayo next week.  I think I need a break already.  The weather is supposed to be pretty bad between here and there for part of the week and I have made plans for the one good day of the week.  But if they call, we will go up there like a good little patient and caretaker and probably give more blood.  (my arm still looks like I have chiggers).

My mother-in-law has agreed to take our doggies for us while we are in Rochester.  She is driving the 11+ hours to my mom’s house, we will be driving the 6+ hours to my mom’s house with the dogs and then the dogs are going back with my mother-in-law.  It’s all good.  My nieces have wanted to meet Pucky and Mojo, and this will give them plenty of time to get to know them.

OK, due to my back problems, I lay in bed a lot.  I have now broken bed #4, this one lasted about 6 months.  In doing so, where I sleep has become very uncomfortable to sleep in, causing even more back pain.  Well, yesterday while napping, I discovered a weird angle across the bed, that doesn’t hurt my back.  I set it up with Teresa last night and I actually got 8 hours of sleep straight.  Miracle of miracles.  My back actually felt good when I woke up this morning.

You know what, I feel really good.  Kinda weird considering I have cancer.  I’m not particularly fatigued, I’m not whiter than normal, I have no weird unexplainable pains anywhere.  I feel good.

I am actually thinking that the virus I had at the end of December, beginning of January caused my platelets to crash and it freaked everyone out that my platelets got so low.  They were at 65 as of last Wednesday.  And I suspect they are going to go up further, back to the 90s that I was at before I got sick.  Now, if I had not gotten that virus, my platelets didn’t  drop,  I wouldn’t have traipsed up to Mayo, and this new cancer would never have been found, and I likely would have gotten sicker and died with the new cancer never being found or if found it would have been too late.

I’m slowly reading (the only speed I read at) all the pamphlets and papers that Mayo gave us.  They must have killed a small tree to print all this stuff.   Some of what I have read is pretty intense, but most is just information.  The book about stem cell transplants was particularly graphic in it’s descriptions of what is going to happen.  Look, I am all right with going ahead with the transplant, you don’t have to try to scare me into say no.  Really, when they start talking numbers, it’s a little scary.

Teresa is bummed about her work.  She has a bunch of big projects that she referred to as her babies.  Well, with her having to be my caregiver, her boss took all her babies away.  Now Teresa is going to be doing “boring and repetitive stuff”, when she can work.  Bah.  I feel guilty about this.

I have a lot of guilty feelings about this.  I know that these are illogical and wrong to have, but it doesn’t stop me from feeling this way.  I know I didn’t ask to have cancer again, but that doesn’t stop me from feeling this way either.  I probably should go see my therapist, but we really can’t afford it right now.  That is going to be the story of our life for the next 5 or 6 months, “we really can’t afford it right now”.

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.


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.

It’s a Mad, Mad, Mad, Mad World

I’m writing this is hope that I get to post it in between cable modem crashes today.

My mind is kinda mushlike.  Yesterday, Dr. Shin from Mayo Clinic called.  He said that they did genetic testing on my bone marrow biopsy material and found out that I have genetic markers indicating that I need a bone marrow transplant.  He said a lot more than that but that was the big thing.  He said I was High Risk MDS (Dr. Wehbe had said it was low risk) and it could kill me quickly if I don’t get the transplant soonish.

I think I am supposed to be scared, upset, angry, something, but I am not.  I am just existing at the moment.  I had said at the beginning of this MDS issue, that I wondered why they just didn’t give me a transplant.  Now I am going to get one and things should be better after that.  Yeah, I will have to deal with Graph Versus Host Disease in all likelihood, and I will be on more pills for the rest of my life.

I was looking at a lifetime of platelet infusions.  But now I am looking at chemo and radiation and then a transplant.  I have resigned myself to the infusions.  I had totally gotten my mind around that and had accepted that as my reality.  Now, I have to rethink everything.  Chemo is a no brainer, you just sit there and they pump poison into you.  Radiation will be new to me.  But how bad can that be?   They kill all my bone marrow and then pump the good donated marrow in, according to what I have been told you can actually see the stuff going in the tube.  Cool.

So, anyhow, I am trying to wrap my head around this new news and the new plan.  Dr.  Shin said I was a weird case.  Alright, that’s nothing new to me.  Been a weird medical case my entire life.  My appointment with the transplant people at Mayo is on the 31st of this month.  That’s a little over 2 weeks from now.  I just don’t know how I feel about this.  I think it’s just gonna take me a while to grasp it.

At least it isn’t a rush like with I was diagnosed with AML on Monday and getting chemo on Tuesday.

Pucky and Mojo will be being boarded at the Adel Veterinary Clinic on the 30th and 31st.  They have a new boarding facility that is supposedly really nice.  They aren’t even a full block away from us, so it’ll work good for us and their price was reasonable.    When I go for the transplant, I believe my mother-in-law is coming to take care of the house and the dogs.

We are staying in the same hotel which my mom and I stayed in the last time I went to Mayo clinic.  It wasn’t a fancy hotel, but it was clean and it’s connected to Mayo but underground walkway.   This is a very convenient thing since we are going during the end of January which can be COLD and SNOWY in Minnesota.

I cancelled my D&D game tonight, my mind is in a weird place and I didn’t want to take it out on my players.  Most of the players are good friends, so they have been very understanding.  Should be back to normal in my head by next week and then they will get the results of their jail term.  LOL.

Therapy is tomorrow afternoon.  Kinda wish I didn’t can my old therapist now, her husband had just went thru the bone marrow transplant and her insights and tips would have come in handy I think.   Oh well, hindsight is 20/20.  Susan will be just fine, maybe she will be able to figure out what emotion set I should be in.  That would help a lot.

Oh yeah, I have to get labs on the 30th, in the huge room with 100s of people with various health issues.   It’s just so weird.  So not what I am used to.  But hey, it’s all good.  They’ll get my blood and run the test virtually immediately and it will be all ready for the transplant team in the morning and Dr. Shin in the afternoon.

When I left Mayo last time, I was angry.  They said there was nothing they would do for me until things got worse….  I guess this is worse.  Dr. Shin was amazing on the phone.  Answered all my questions and was so polite.  His news was so not what I was expecting.  But by the end of the conversation, I sorta understood what was going on and felt comfortable going back to Mayo.  Besides, if I have to have a bone marrow transplant, why shouldn’t I take advantage of the #1 hospital in the nation for it?