A Bunch of Babble

Still dealing with this stupid depression.  Stupid stupid stupid.  I know I have nothing to really be depressed about, but I am down.  I don’t think Teresa’s hypothesis (which I mentioned yesterday) is a factor in keeping me down.  It might have been the trigger, but it’s pure bipolar crap that is keeping me this way.  I should be in a good mood, I am getting what I wanted, but no, I am down in the dumps, thinking the world would be better without me in it.  No, I am not suicidal, I never get suicidal, I just got really down depressed, which is where I am now.

Furthermore, I know if I came off my Nimodipine this mood would flip in a heartbeat or two.  But I am not that stupid.  Cycling like a madman is not preferred over being depressed.  Just another crazy thought that goes through my head when I am down.  Heh, my filter must be off today.  Don’t mind me, I’m just the crazy guy in the corner wishing he wasn’t alive but not going to do anything to reach that wish.


I did go to lunch with my good friend Drew.  Yes, finally, the lunch we scheduled months ago finally happened.  Beirman Furniture (the business furniture store he works for) picked up the tab…  Thanks Nate.  We did go to HuHot and it was exceptionally good today and not very crowded.  So we had a nice lunch and a nice chat.  I almost forgot I was depressed, hanging out with my friend was good for me.


Then the dryer vent cleaner guy came.  He was a really nice guy.  If you live in central Iowa, then use Central Iowa Duct Cleaning, Gary is a stand up guy, did a great job, came out next day and didn’t charge extra for coming out to Adel, and his flat rate (including tax) was 106.00 dollars and he really had to work for it on our dryer vent.  Two major plugs, it took him almost a whole hour to unclog our vent, but now air flows through cleanly.


Now, after playing happy for a few hours today, I am feeling drained.  I am thinking of taking a nap between when I finish this blog entry and when Teresa gets home.  I don’t normally take naps this late in the day, but today I might just do it.


Well, I heard back from Mayo, May 17th is Transplant Day, Day 0.  Which makes the 8th day -9, when I first have to show up at the hospital to take some anti-seizure pills.  2 days of pills, then 5 days of 1 chemo, then 2 days of the other chemo, then a day off, then the transplant.  Then we find out if I have to have extra chemo after I get the transplant.  I hope not, that would truly suck, but Dr Alkhateeb has mentioned this possibility several times.


May 17th also is the day that the dietician people rescheduled the class from May 3rd.  DOH.  They obviously didn’t look at my schedule when they rescheduled the class.  Well, the class is mainly for Teresa and I will be having a lot of prep before the transplant, so maybe she can go while I am getting prepped.  Or maybe then can move it til the 31st when it’s offered again if they really want me to be there for it.


We are going to try to leave here the evening of the May 2nd and head to my mom and brother’s place.  It’s a 6 hour drive and Teresa plans to work a full day, then drive it.  OUCH.  But if anyone can do that, it’s her.  Us going depends on 3 things.  1.  We get all packed in time.  2.  Sumpter Pharmacy can get permission to fill my meds a day early and gets them filled in time.  And 3.  We get official word from Mayo that the donor is on board and it’s all a go.  (Yeah, we still haven’t gotten that).  I’m not too worried about the first 2, packing I can do while Teresa is at work and Sumpter Pharmacy has never let us down.  The 3rd item might be an issue, but I will start harassing them soon to get official notice.


The plan is to get to my mom and brother’s with the dogs LATE on the 2nd.  Then spend the 3rd, 4th and 5th there, seeing friends if they are up to it, spending time with my family, and I would say trying to get the dogs adjusted, but 3 days isn’t enough for that.  Then the 6th driving the 6 hours to Rochester from Portage.  Then taking the 7th off to just relax.  Then start my treatment on the 8th.   Seems like a solid plan if you ask me.  Everything seems reasonable except the 6 hour drive after a full day of work on the 2nd, I think that is borderline insane.


Oh yeah, Drew said he’s going to come visit me up in Rochester.  I told him it has to be after 20 days after transplant.  I will be pale, bald, and wearing a mask, but I will be happy to see him.  But he said he was coming, I said he didn’t have to, and he said that he was coming anyway.  That’s the kind of friend I have in Drew.


I have a couple other friends who were talking coming up to visit me, I do not know if they are still planning on it or if it’s even crossed their minds in the months this has been pending.  I guess I will have to reach out and find out for myself if they still want to come.  You know friends seeing you when you are at your absolute worse, fun fun fun.


Room in the car is going to be tight for the trip up.  Teresa has already blackballed a couple things I was planning on bringing.  However, she has agreed to my D&D books. Since I am only taking 4 or 5 and then having Modenkainen’s Tome of Foes delivered up there.  The case I am taking them in will fit without much problem.  I just get the feeling that the 2015 Dodge Dart was not meant to haul 2 peoples’ stuff for 4 months.  I think there is more room in the Neon, but Teresa doesn’t like to drive it cuz it’s a stick, well maybe not more room, but different shaped room (squarer trunk).


I’m also taking my big book about Skyrim.  It’s about the size of 3 D&D books.  I will make room for it.  Yup.


I can’t seem to get my head around being away from home for 4 months.  And that is assuming I get out on time.  Everyone that I have mentioned the 100 days to has basically chuckled and said, “OH, your on the 100 day plan” inferring that most people get stuck in the transplant house longer than 100 days.  Oh well, this is my mental block, I guess I will just have to live it.


Damn, I have been blathering for 1200 words or pretty close to it.  I think I will go grab something musically and then sign off.


Yeah, I usually try to find a video which means something or is special to me.  In this case, you get a video.  Sorry.

My plans have plans

Hmm, I sprained, strained, or tore something inside my right thumb.  Started hurting on Friday.  I think I am going to go to the doctor (well, Chris, the PA) tomorrow.  I wonder if the Adel Mercy office has an X-Ray machine?  Would be easiest for me if they did, then I wouldn’t have to go somewhere else.  For some reason I am thinking they do not, I am thinking I remember him saying so before.  Oh well, I will go see him, let him squish the far in joint, watch me squirm and yelp and then go about my business, which might include going to Mercy West Lakes and getting an x-ray of my hand.  Not a fun way to spend a Monday, especially not with other issues pending so close.


I am typing this mostly left handed, so I am not tempted to space bar with my right thumb.  It’s actually quite difficult.


Because I can’t type comfortably, my book that I am writing has been put on temporary hold.  I am approximately 8500 words in and feel pretty good about that even though I started writing 2 weeks ago.  I didn’t write anything while at Mayo, had my mind on other things.  I tried to write some (about 200 words) on Friday evening and it hurt my thumb a lot.  So, I have called a book writing hiatus.


If we do nothing for the speeding up of my transplant, it’ll happen in about 5 weeks or so.  15 work days is what insurance wants to approve the transplant.  I hope to be able to call the insurance company and possibly speed things up a bit.  I have the eerie feeling that my platelets are gonna tank 1 more time before the transplant, which would mean another platelet infusion which would cost them money.  So, you can see it’s in their best interest to approve me for the transplant early.  According to my transplant doc, it’s a slam dunk case, I get the transplant or I die.  Simply cut and dry.


Teresa discovered a way to play with her PlayStation on her Mac.  This is a good thing because there really isn’t a whole lot to do up in Rochester if you are the Primary Care Giver and not actively giving care.  Teresa plans to work, thus we are dragging her Mac up (used to be my Mac, long story) to Rochester.  If she happens to play the new God of War game in her spare spare time, it’s nobodies business but hers and I guess technically mine.


I am taking my D&D books with me.  I am gonna work on a large campaign for when I can get back to playing online with my friends.  This will probably end up being the largest campaign that I have plotted out, but when all you have is time, it’s, I won’t say easy, it’s less stressful than when you are budgeting time that you probably should be doing something else with.  And Mordenkainen’s Tome of Foes is supposed to come out May 29th, so I have a new book of monsters to throw at the group.  Yeah, this campaign should turn out EPIC.


We still haven’t taken the dogs to my mom and brother yet.  We are holding out to the last possible minute.  It’s going to be rough to leave them behind, but this is what is the best for them.  The other options we had were too expensive and Pucky and Mojo wouldn’t get the amount of human contact they want/need.   So, when the transplant is scheduled, we will make the pilgrimage to the Region and drop off our furbabies.


I have lunch scheduled on Tuesday with my friend Drew.  Gonna suggest Gusto Pizza or HuHot Mongolian Grill to him and let him make the choice.  I am fine with either of these two places.  Gusto cuz well, it’s the best pizza we have found in the Des Moines area or HuHot cuz I am soon not going to be able to have fresh fruits and vegetables for quite a while.  So either choice is cool with me.


Yeah, for you who may be interested in sending something to me while I am in recovery.  Don’t send a fruit basket and any flowers.  Beyond the reason that both can kill me, they are also not allowed at the Gift of Life transplant house and will be rejected.  I will post the address for cards and stuff like that when we have a permanent housing spot for the 100 days.


Speaking of the 100 days.  Teresa overheard some of the Primary Care Givers talking about the 100 days.  Or the 160, 240, and year that these women had been in the transplant house.   I will go fricking NUTS if I have to stay much longer than the 100 days I was told.  I can understand if I am sick they aren’t letting me go, but if I am healthy, the damn well better let me go when they said they would.


As it stands, I won’t be cleared to travel anywhere for at least a year after my transplant.  So May 2019 is what it looks like.  That is ok, we wont be able to afford to travel before then anyway.


It snow again last night.  Started on APRIL 14 and snowed right into APRIL 15.  Someone needs to wake up mother nature and let her know that he world is supposed to be experiencing Global Warming.  Snow in mid-April is ridiculous.


Tomorrow I need to call Julie, my shrink’s secretary and relay the info that Mayo send to me for my shrink.  They asked for a letter with diagnoses and treatment stuff.  Still don’t know the name of my cancer shrink and I guess they aren’t giving it to me for my shrink either.  Oh well, we have a fax number and a general idea of who to send it to for sharing with Dr. Alkhateeb and the Cancer Shrink.


Heh, when I started typing this entry, I didn’t think it was gonna be over 1000 words.  I guess I had a lot more on my mind than I have had recently.  I guess I’ll cut this off here, I think I have ran out of ramble for now.


I may have played this song before on my blog.  But hey, “Don’t Stop Me Now”

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


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?