Things we do while WAITING…

Teresa caught a bug, it started on Saturday night.  I skimmed thru Saturday and Sunday without feeling sick, I really thought I would get thru this one without catching it.  Then yesterday afternoon I started feeling rough, by evening I was not feeling well at all.  Today I don’t feel good and have a sour throat, but I have no sinus issues (like she does) and I am not running a fever (I don’t think) yet.  I hope this bug blows over quickly for both of us, as if Teresa is sick, driving up to Mayo would suck for her, If I ask Mayo probably doesn’t want me to come, both of these assuming Mayo is going to come calling for me this week.


Last night we watched Wonder Woman (yeah, I know, a little behind on movies).  It was a good flick.  Didn’t like the casting of Mars, Teresa kept pointing out that he was Professor Loopin (from Harry Potter), I just thought his moustache looked humorous when he finally got in armor.  But overall the casting was excellent.  The acting was great.  It was a really good movie.


Teresa has taken over paying the bills with my supervising. It seems that last time I was out of action, she claims she didn’t do a good job and we had a lot of late fees.  This time we are making sure she knows what is coming, how much it should be, and how to pay it.  It’s not rocket science, just a ton of them hit at roughly the same time and it can get to be a confusing mess.


Had to cancel my dentist appointment today.  Kinda bummed about that, but kinda happy about it too.  Need to see a dentist, don’t want to see the dentist.


Waiting for Mayo to send me a message or call.   Should happen today, tomorrow, or Thursday.  The hold up was insurance getting the information and assigning a pre-certification number for it.  Insurance got the package on Friday, have no idea how long it’ll take them to process it (she did say 24 hours, but we had a holiday, so who knows).  I figure they will let Mayo know what is covered and what isn’t and Mayo will in turn let us know.  But right now, it’s just more waiting.


Pucky and Mojo know something big is about to happen.  They never have clung to me like they have been doing.  If I am awake, I now have at least 1 dog with me at all times, sometimes both of them.  It’s kinda nice, always having one of them close.  They are sweet dogs.  But having to move Pucky every time I want to sit down is a little annoying.  I love our dogs, Pucky and Mojo are great companions.  I am gonna miss them while I am doing the 110+ days.  They will be in New York with Grandma Shirley, and hopefully that won’t be too bad for them.


I keep forgetting that it’s gonna be Spring (full Spring, not this weird crap weather) when I finally get my transplant. It means that this transplant will ruin what is left of Spring and all of Summer.  I should still be in my 100 days the two weeks of August, which  means I get to spend my birthday at the transplant house at the very end of my stay (Teresa’s birthday is at he very beginning of the stay).  Heh, I should have my hair growing back by my birthday.


I spent most of yesterday copying CDs to my iTunes.  I should be musically covered for the most part while I am laid up.   I own a lot of 70s and 80s compilation CDs.  I have bought all my recent CD purchases thru Publishers Clearing House.  That is how I ended up with these compilation discs.


The fatigue seems to be getting somewhat better.  I only slept 13 hours today.  About the same that I slept yesterday.  Which is much better than 16 or 17 hours like I had been doing.   Still tired, but not dozing off, so I’ll take it.  Maybe by the time I get over this bug I will be back to sleeping normal hours.  A boy can dream, right?


Yay for family…

My brother finally (not that he didn’t do it first real chance he got) got his blood taken for the possible match to be stem cell donor.  I am actually more nervous about this than the thought of actually having the transplant.  I am nervous because if he is my donor, I will have a 30-40% chance of having GVHD or if I have a 60-80% with a non-related donor.  I know I said 1 in 5 don’t get GVHD, well there ya go, the actually percentages.  Jim, even if you can not be my donor, I appreciate what you have done for me so far and I couldn’t have a better brother at my back.  Thank you.


I asked Teresa if she would be my primary caregiver for the whole 100 days.  A little selfish of myself, but I think during that time, I will need my wife to be by my side.  I had asked my mom to come and take over when she visits, but I think I’d rather her stay in a hotel and just visit.  I’m sure she will understand.  Teresa told me that she would do as I asked.  I love my wife with everything, she is the greatest.


So, now I have to tell my mom that I just want her to visit and not take over the caregiver role.  I think she was looking forward to taking care of me again.  I will talk to her tomorrow about it, and make sure she understands that it’s not that I don’t want her to be it, I just want my wife to be my caregiver more.


Teresa and I are actively/passively watching the Olympics tonight.  Just watched that 17 year old Korean-American girl, Chloe Kim, win gold in the snow board half pipe.  Very impressive runs on her part.  She definitely deserved to get the gold.  Would have been cooler for the Americans to sweep, but the young lady (who I don’t remember the name or country of) who took silver deserved it too.  Bronze went to an American too, but I agree with the announcer that the other American had a better run.  Heh, it’s all good.  2 more American medals.


My transplant doctor gave me the okay to go to the dentist IF my platelets were at least 50,000 and my neutrophils were at least 15,000.  The 50,000 of my platelets should be no problem.  However a week and a half ago my neutrophils were only 2,000.  Tomorrow morning I will go get a blood test and see where my numbers are.  If the numbers are good enough I will be calling Teresa’s dentist.  The dentist I liked at the Adel Family Dentist Care has left and I don’t like the other dentists there.  So, Teresa really likes her dentist and I am in the market for a new dentist.  So, perhaps this will work out and I will like Teresa’s dentist too.

And for those who have been following along, platelets clot blood and neutrophils (new word) are white blood cells that fight bacteria.  With both, the higher the number the better.  Platelets are supposed to be 150-400,000.  Neutrophils are supposed to around 15-17,000.


Downhill Combined is boring compared to the Snowboard Half Pipe, just saying.


Pucky and Mojo got their Health Certificates today, so they are totally legalish to travel all the way to New York.  It’s not like anyone is gonna ask for them.  It just seemed to make sense to get them.  And the vet didn’t charge for the visits, so we only had to pay for the Health Certificates themselves.

I am gonna miss Pucky and Mojo very much over the 100+ days.  I really love my dogs, and they are gonna be so far away.  I hope nothing bad happens to them and in 100+ days my mother-in-law brings them back to us none the worse for wear.  I am not worried about them, my mother-in-law will take great care of them.  And my nieces want to see and play with them, which will make Pucky happy, Mojo will probably scream and run away at first.


Before I go into the hospital for the chemo/radiation before the transplant, my wife will shave my head as tight as our shaver can make it.  I did that at the barbershop in the basement of Mercy Hospital here in Des Moines when I had chemo for the leukemia.  It just makes things cleaner.  At least I think so.  Teresa would probably argue that it makes little to no difference, a mess is made either way.


I shouldn’t have cancelled my D&D game or quit the Friday night one as early as I did.  I freaked out, that’s what happened.  I could have ran my D&D game for 5 or 6 more weeks and played 2 or 3 more Friday nights before I had to go to Mayo.  Oh well, what is done is done.


Teresa put on Teen Wolf, she has watched every episode (except the ones DVRed the she is watching now).  I quit after season 1.  So I really have zero clue what is going on or who is who.  Therefore, I do not really like the show.  So, I am gonna go play Skyrim I think.  That’ll keep my attention better than writing this is spurts like I have been doing.


MUSIC


All messed up with some place to go

Well, I was wrong about the test that Mayo was going to send my brother.  Instead of mouth swabs (which are brain dead easy, do it yourself) they want 8 (count them) 8 vials of blood.  Then they want those vials of blood sent back in dry ice.  Yeah, sure, the average person knows where to get dry ice, don’t they?  Well, turns out there is a place not to far from my brother’s house that sells dry ice.  So he has to get the dry ice then go some place that will take blood for him.  Get the blood in the tubes, get the tubes in the dry ice, and then get it all in a box and ship it to Mayo.  Oy, it probably would have been quicker (and easier) for him to drive up to Mayo and give them the blood directly.  Oh well, I think it’s getting done today.  So we should know if he is a match Monday or Tuesday.


Also I was wrong, the number I posted for the bone marrow donors program was for related people only.  https://bethematch.org/ is the national registry site.  I would encourage any of you younger folks who are interested in being a donor, contact the people at that site and they will get you hooked up.


I felt like crap the last 2 days, all the symptoms of the flu except a fever.  I haven’t ran a fever.  Which I have to say is a good thing.  Fevers over 101 = hospitalization, even now being that I am 2+ years out from leukemia.  I don’t want to go to the hospital until I go for transplant time.


If I didn’t know that Dr. Alhkateeb wanted to do the transplant in a month or so, I wouldn’t know there was going to be a transplant.  Haven’t heard or read a single peep from the team since Dr. A sent me the message that I needed to take Vitamin B6.  That was a week and a half ago.


My mood is good.  I’m very positive about this whole situation.  Yeah, I have cancer, but it’s blood cancer so until I get sick sick, I won’t even notice I got it really.  My platelets are back up where they want to be (between 65-90, still lower than normal, but not scary anymore).  Besides feeling fluish, I am doing good.  Just waiting and waiting and waiting and waiting.


Part of me though, is a little nervous now.  There is a small chance that my body will reject the new stem cells.  And if this happens, I die.   Simple as that.  A little sobering too.  The rest of the possibilities of mishap are nothing compared to that.  I mean Chronic Graph Vs Host Disease would suck, but death would suck a lot more.  I know the odds are way small of death, but it is a real possibility.


Resumed slowly getting ready for the 110+ days we will be in Rochester.  My mind still hasn’t gotten totally around it.  Just seems like so long.  14+ weeks.  Still sounds really long.  And that 100 days after the transplant are not written in stone, if I am not doing good it will be longer.  Inversely if I am doing real good, it could be shorter.  But 10 days for transplant is solid.  And 100 days is average.  But at the rate we are going, its may end up 5 days for testing 10 days for transplant and 100 days for recovery, all mushed together.


I resumed playing Skyrim last night.  My guy is now level 21, has the CHAOS enchant, and a pet dog.  Kicking butt, not bothering to take names.  He is just about to find out the Kodlak is dead, and be forced to go kill all the rest of the Silver Hand and recover the pieces of Wulfrad.  Yeah, this means nothing to most of you, but for you that do know what I am talking about, it normally happens around level 9 or 10, I am doing it at level 21.  It’s all good, doesn’t matter what order you do things in, just get it done.


I have no clue when we are going to take Pucky and Mojo to my mom’s house.  I really feel that once things start we aren’t gonna be able to get away to drop them off.  We literally might be at Mayo on Friday, drive home Friday evening, drive to my mom’s with the dogs on Saturday, drive back to Mayo Sunday night for Monday things.   UGH, I don’t want to have to do that.  But that might just happen.

The dogs are going to miserable wherever they end up.  At it looks like they are eventually going to end up with my mother-in-law.  Mojo will howl and Pucky is gonna whine a bit.  Poor guys.  They don’t know what’s going on, they won’t understand.


I’m gonna call and cancel my shrink appointment for tomorrow.  I have plenty of meds and I just don’t feel like driving in the snow storm.


Oh yeah, we are supposed to have a snow storm tonight thru tomorrow afternoon.  I am so ready for winter to move on.  Would be nice to have 50+ degree weather and rain instead of the 14 degree weather and snowstorm.   But its not quite spring yet, so we live with what we get.


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, https://www.gofundme.com/cancer-has-returned-we-need-help , 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”.


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


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.