Waiting for the Summoning

Sometime soon we are gonna get summoned (well, I will be summoned) up to Rochester to start testing my organs and to make sure I am mentally sound enough to go thru this transplant.  I am not worried about either thing.  I have 3 gall stones, but they supposedly are not an issue according to Christopher, my PA.  Other than that, I have Hashimoto’s Disease, so I have an underactive thyroid, meds keep that in check.  My organs work fine and have always worked fine so I don’t see a problem there.  As for my mental state, I may be bipolar, but it doesn’t mean I am crazy (most of the time).  I understand what is happening and what they are gonna do.  I have read all the paperwork and books they gave us.  I am ready physically, mentally, and emotionally, can’t ask for more than that.


I’m in a weird place mentally at the moment.  I’m not up or down.  (I told ya my down wouldn’t last very long)  I am just existing right now.  Which is okay.  Can’t dwell on the scary parts, cant blow em off either.  So I am somewhere a little lower than my normal hypomanic.   I have little interest in doing much of anything right now.  Fatigue is up, sleeping a whole lot.  But I am not thinking doom and gloom.  So I am not depressed.


We have made 1120 dollars out of our 10,000 dollar goal on the GOFUNDME campaign.  I can’t think of a good update that doesn’t sound like I am trying to guilt people into donating.  I don’t want to be that kind of person.   Nothing is happening right now, so updating is difficult.  But on the other hand, I want to keep it in my circles head, so I kind of need to update.  Oh well, I’ll figure something out.


I have an appointment with my shrink on Friday.  Can’t really afford it, but need to talk to someone and this kills two birds with one stone so to speak.  He will chat with me about this and he will write prescriptions as needed.  Dr. Fialkov is a really nice guy, besides being a good enough shrink.


Gonna have yet another scar on my torso.  They have to use a port (I prefer PICC lines) to give the chemo and do the transplant.  So a 3 inch scar on my chest is what I will be getting.  Yay rah.  More scars.  The port will be used to give the chemo and take blood draws and give any other meds they want me to have before the transplant and then used for the transplant itself.  Supposedly you can see the little stem cells going thru the tube.  That is kinda cool.


They took a huge (relative) chunk of bone marrow out when they did the bone marrow biopsy at Mayo.  The hole in my flesh above the hole they put in my hipbone was considerably larger than the ones done at Mercy.  It also ached more.  Didn’t ache for any longer, just was more uncomfortable.  But I will tell you what, they can knock me out for a bone marrow biopsy anytime.  Didn’t have to hear commentary, didn’t have to feel the pressure, all good things.  Yeah, it ached more after, but hey it was much more pleasant during.


I wonder if my brother got the testing kit from Mayo today.  They sent it last Friday, it’s not that far, but there has been serious weather between point A and point B in the mean time.  The sooner he gets that and the sooner he sends it back to Mayo, the sooner we know if he is a match.  The sooner we know if he is a match, the sooner we know if we have to do the national registry route.  I REALLY hope he is a match.


Everything else is held up on finding a match.  EVERYTHING.  No use in getting me ready if they don’t have a donor.  Makes perfect sense to me.  So, if my brother isn’t my donor, Dr. Alhkateeb will have to initiate a donor search in the “Be a Match Registry” also know as the national registry of bone marrow/stem cell donors.  This search is expensive and not covered by my insurance.  Anyhow, that search can take up to a week or so to find a match.  They found me a match in 2015, but that match is no longer valid.  So a new search will be in order.  But basically nothing else happens until they find me a match, be it my brother or some stranger.


I’ve given up on going to my brother’s 50th Birthday party.  Got him a cool gift though and it’s gonna sit in his house for months.  So, where I can’t say it’s all good.  I can say, at least he gets to think about it every day and try to figure out what it is, and that is good.

The 30th year High School Reunion is pretty much a NO GO too.  My system will still be messed up pretty good to put myself in a room with that many people.  I mean I would love to go but September is probably too soon.

Thanksgivingfest and lunch the day after.  By the end of November I should be (read should be) able to make the trip over to see my mom and down to see the Gang and see Andi and Shawn on the day after for lunch.


Thank you all for reading this babble.  Like I have said many times, I write this for me, but share it with anyone who wants to read it.


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?


Everybody was Kung-Fu Fighting

Been really down the last couple of days.  Like almost suicidal down.  This whole issue with my blood platelets has thrown me crashing down.  Right now, I was I would just die.  No, I am not going to do it, just wish it would happen.  I know this is just temporary and that my mood will swing back up, but in the interim things just plain suck.  Today is the same as yesterday and the day before,  except today I have petechial bruising again.  Having petechial bruising again means my platelets are at 20 or below.  Which in turn means that on Wednesday or Thursday I will go get my blood drawn and see where my platelets are and probably get an infusion.  Yay rah.  This is how my life is going to be from now on.  Exciting, ain’t it.


Last night’s D&D game was fun, wish I had been in a better mood as I probably would have described it with a better adjective.  We achieve our goal, found out the information we needed, and 3 of the 4 of us who didn’t have our super items got them.  The thief took mine or it would have been 4 out of 4.  She found these items, and doled them out to who they were for but liked my item too much and decided to keep hers and mine.  Exactly as a rogue should do.  So now, the DM has to scramble and come up with a new item for me and find a logical place for it to be in the campaign.  I think it was kinda funny that the rogue took my item too.  Anyhow, the DM asked me what kind of item I want and in my depressed state it’s hard to think of rewards or super items.  So I bowed out for coming up with my item until I got out of this funk.  Which hopefully will be soon.


Next week is supposed to start out cold and then get into the 40s again for Saturday.  Heh, I don’t think Mother Nature has a clue what to do with us in central Iowa anymore.  We had a 1 day snowstorm and then it’s supposed to be nice… Cold but nice until it warms up in a few days.  Then we will probably have a few days Above Average Temps and then another 1 day snowstorm and then nice days, rinse, repeat.  That is how winter has been so far.  There are only like 7 more weeks of winter anyways.  Heh.


Teresa bought another big light for the bedroom.  Then I get the smaller big light for the other side of my computer desk.  As the lighting in the room now stands, I get light on half of my desk and zero on the other half.  I have a little portable lamp, but that light is just glaring, I want the smaller big light, just not sure where I am gonna put it yet.  In the mean time, I have to figure out how I am gonna move a big light into the small corner by Teresa’s side of the bed.   I guess I will figure it out.  Maybe we clear it out and she just assembles the big light in the corner, that is probably the BEST idea.


I’m definitely less fatigued taking the higher dose of thyroid medicine.  Still get tired pretty easy, but I am not needing hours and hours of naps.  Don’t get me wrong, I still love a good nap, just on my terms, not because I feel I have to.


I have to feel better mentally by Tuesday, cuz Tuesday’s D&D game is going to be fun to run.  The players are going to face a huge decision with great consequences.  And I want to be able to seriously laugh at them why they try to decide what to do.   They got themselves in a big mess, so they have to pay the penalty for the mess, right?


This section was stupid so I removed it, don’t know how to get rid of the lines, so I thought I would tell you about it.


I never did make it out to Quality Marble and Tile to look at tile.  I know I posted I was gonna try to go last Friday, but depression grabbed me and I stayed in bed.  Getting out there might be one of those February things.


I am still hoping that my new Therapist isn’t an old lady.   I don’t mind older than me, but I don’t want one who is my mom’s age or close to it.  I want someone who can relate.  I really wish her phone connection wasn’t so screwed up so I’d have a clue as to her age.  But it’s all good I guess.  I just need to vent a lot of frustration and fear and anger out somewhere and I won’t hit Teresa with all that (some of it, but not all), I’ll save that for a paid professional.


Just another Monday, nothing manic about it.

Today I went and got a cat scan of my brain.  Having low platelets and a headache for 13 days triggered some alarms.  And better safe than sorry, off I went to have my cat scan.  It too about 10 times longer in registration than the test took.  lol.  Yeah, the registration ladies were slammed, the waiting room was practically standing room only.  Busiest I have ever seen them.  But I waited my turn, almost took another Jeff’s turn but that was only a little screw up on their part.  My turn was 2 people later.  heh.  Anyhow, I got registered and plopped my butt back down in the seats and waited for my cat scan.  The other Jeff went before me, he was in there for about 4 minutes, I was then called and was in there for even less I think.  Heh, I will take a cat scan over an MRI any day.


I also let my therapist go.  I didn’t want a huge fight over Mayo.  See her husband had AML shortly after I did.  He went to Mayo and they treated him like he pooped gold according to her.  Well, I have been very vocal about how Mayo treated me, so needless to say, it would have been awkward for me to be bashing Mayo to her while she holds them in such high regard.   I still think I need therapy, but I don’t think I can continue with my current (now ex) therapist.


The rest of the day, all of the morning and into the afternoon, I relaxed and did nothing.  OK, not nothing, but nothing truly constructive.  I didn’t even play any Skyrim or anything.  I just laid in bed like a lump.  It was a very fine way to spend most of a Monday.  But I am glad I had to go out, it was 43 degrees today, beautiful for winter in Iowa.


Tomorrow night is the 2nd session of my D&D game.  I believe I am ready for it.  If not, I will get ready tomorrow during the day.  I like which direction the party chose to go.  It should be a fun and interesting time, and have our first taste of mumble combat (which is always a mess for first time mumble players of which we have 3).  It’s all good.  We will have some laughs and they will get some treasure and they will be quasi-low level heroes.   Works for me.


This Friday should be session 3 of the Friday Night game.  First two sessions were a lot of fun, I don’t forsee there being any difference in this session.  The DM has decided that he is gonna give us items which grow in power as we level.  Cool, I like that idea.  Too much work for me to track so I probably wont be stealing it.


Pucky and Mojo got into Teresa’s candy stash and proceeded to mow down a lot of chocolate.  They seem ok, but a little sluggish.  We will watch them closely.  The biggest thing that has happened any other time they have gotten into chocolate is diarrhea and you’d be surprised the amount 2 Chihuahuas can put out.


I feel good.  That has been iffy in recent times, but I feel good now, right this minute.  And you know what?  I’ll take that.  I Feel Good.


Yesterday, I started a female wood elf character in Skyrim, named her Lilly.  The only reason I made a female character is their is a perma-buff you can get in the game which gives you major plusses vs boss type enemies of the opposite sex.  Since 95% of the boss type enemies are male.  I decided to play a female.  And it’s totally funny that they (Bethesda, the company who made the game) changed the way people talk to a female vs a male.  The male computer characters are all nicer.  lol.  Lilly is only level 12 right now, doesn’t have that perma-buff yet.  But is cruising along nicely.


Tomorrow I think I am going to drive up to Grimes to see Quality Marble & Tile to get a price quote on getting tile put all over our main floor.  Teresa originally wanted heated tile but that turned out to be cost prohibited.  Now she just wants tile everywhere.  I got her to agree to throw rugs over said tile, she agreed “as long as they are washable”.  I can agree with that.


Wednesday I am going to lunch with Drew the business furniture guy I have mentioned several times.  We do lunch every now and then, taking turns who is buying.  Well, he thinks he is buying this time, got news for him, he gave us a really expensive chair, I am buying his lunch this time and next time and maybe the time after that.


And Thursday I see my Cancer Doc, Dr. Wehbe.  I have about a zillion questions for him now that my platelets have tanked and I have started platelet infusions.  Teresa has a bunch of questions for him to.  After all, this is gonna be our life for the rest of my life, however long that happens to be.


Music for the masses………


D&D, Bone Marrow, and getting out of here

Heya, some of you might notice the new banner.  I replaced the Gnolls with Yuan-ti.  Yuan-ti are to be my new arch enemies in the new D&D game I will be playing in starting the week after Thanksgiving.  I am really looking forward to playing this game. Danny really is putting a lot of work into it.  My Ranger’s backstory fits in perfectly with what Danny has compiled, so it’s all good.  Can’t wait to get started.


Went to see Dr Wehbe (my cancer doc) today, platelets have stalled out at 30.  Supposed to be 150 to 450.  He has no clue as to why my platelets are so low.  He is going to order yet another bone marrow biopsy after I get back from vacation.  I really don’t think it’s leukemia again.  I don’t know what to think it is.  Just sucks having platelets so low.  Anyhow, he is all for us going to Mayo Clinic up in Minnesota and having them take a run at fixing my platelet problem.  When I mentioned Mayo Clinic, he was all for it, he is really the befuddled.


Therapy yesterday went fairly well.  We talked mostly about what is bothering me the most, which is my platelet issue.  My therapist’s husband got AML shortly after I went into remission.  So she has more of a clue as to what I am going thru than your average therapist would have.


We are leaving for the Region in a couple hours.  It’ll be good to get the heck out of here and forget my problems for a week.  OK, I won’t forget them, just won’t be sitting at home thinking about them.  Portage, specifically, has changed so much, but somehow it still feels like going home.  And getting to see mom and Jim are just bonus.


Thanksgivingfest (one word, not two like some people write it), is Saturday.  Cakes are all set to be picked up between 10:30 and 11.  The party itself will go from noon to midnight or so.  With food being served at 1 o’clock and munching happening all the rest of the time.  I know I have said it before, but I look forward to Thanksgivingfest every year.  It’s my only chance to see the Gang every year.  Now not all of the Gang show up, but enough to make it feel good to hang out with your best friends who are family.


Lunch the day after has been cancelled.  Much to the bummer.  Shawn and Andi are both going out of town.  It’s all good, it’ll give me a chance to get back to the Region at a reasonable hour.  So, I will only be in the Indy area Friday night, Saturday, and Sunday morning.  That is fine.  Gives me more time with mom and Jim in the Region.


Taking 2 laptops, maybe 3 with us.  I am taking 2 myself and I believe Teresa is taking her old work mac laptop.  She might have to work tonight after we get to the Region.  That would SUCK.  She really needs a vacation more than I do.   She works way too hard and way too much.  She needs to get away from her phone and just chill for a while.  I worry about her.

My new laptop is going so we can play WoW.  My old laptop is going so I can check Facebook and play Civ4 Warlords while Teresa plays WoW.  My old laptop will go with me down to Fishers (Indy) so I can show Cori the cook little program I use to make characters for D&D.  My old laptop still works, just takes 10-15 minutes to boot.


I guess I need to finish packing and help with all the other stuff we have to get ready to go.  Us going somewhere for a week is a big production.  Bigger than it should be, especially with Teresa taking a bunch of cooking stuff since “she is cooking Thanksgiving”.  We are gonna jam a lot into our little Dart.


I don’t have a title for this one

Is it possible to excited and depressed at the same time?  Well, that is what I am right now.   Excited about the things happening this weekend and next week.  Depressed because of fricking fall.  The good news is that I will be able to fake it til its real and be in a good mood for this weekend.  Yes, I won’t be depressed for Thanksgivingfest or Sunday Lunch.  I won’t be depressed while in the Region or having Thanksgiving.   The bad news is, I normally crash into a bigger depression after I get back.   Heh, at least no one except Teresa sees that.


The cakes are ordered.  Set to be picked up between 10:30am and 11am on Saturday morning on our way to Sam and Shel’s.  So glad that Taylor’s Bakery is on the way.  Things do work out from time to time.


I really wish that Teresa was able to come with me to Thanksgivingfest, but Mojo would go nuts and howl and cry and poop in places where he isn’t supposed to if we left him just with mom and Jim.  So Teresa will be staying at my brother/mother’s house and I will be going down to Indianapolis.  It’s a good thing that my wife and my mother get along so well, it would be a nightmare if it was any other way.


Thinking of cancelling experience gain on Ughughkill.  That way I can literally do EVERY quest in Draenor.  Oh, this is WoW talk in case you didn’t know.  As is stands right now, he is level 96 and can see every quest still in Frostfire, Gorgrond, Talador, and the Spires.  If he were to try to do all those quests he would hit level 100 which I am trying to avoid at this time.  Stopping experience only costs 10 gold to stop it and 10 gold to resume it.  Ugh has plenty of gold, so that’s not an issue.   Teresa pointed out that nothing forces me to go on to Legion at 100 and I can continue on in Draenor until I am out of quests with all xp shrunk for back content when I hit 100.  Heh, I just don’t know.  Right now, Ugh is just sitting in his garrison sending followers on missions while I am trying to decide.  LOL,  Ughughkill is being a pacifist atm.   But that was after over a year of sitting in Orgrimmar doing nothing,


I started a new warlock on Thrall, his name is Haphaizo.  I already forget what language it was, but it roughly translates to Killing It.   Demonology Warlocks can do a lot of damage, especially later in levels.  But even early I should be top 2 dps in dungeons if not top dps.  It’s all good, I just decided I like warlocks after all.  So different than my warrior fall back.  I have so many warriors, so so so many warriors.  I need to play something besides warriors from time to time.  Keeps wow interesting for longer.


Shawn just told me via Facebook that he can’t make lunch on Sunday.   Shawn cancelled yet again.   Good excuse though, his parents just moved to North Cakalaky (Carolina) and he and his family are leaving on Saturday to go visit.  I understand.  It’s all good.  His kids need to see his grandparents.  He also said that 2018 he will make lunch.  We shall see.

Hopefully I will hear from Andi today, and she won’t cancel on me.  It’ll be good to see her again.  She has quite possibly been my friend for the longest time.  All my other friends come from High School or Ball State or later in life.  She is one of the few who I knew from pre-high school.  Heh.  Damn, we have know each other a long time.


Funny thing happened this weekend.  I surprised Teresa by telling her we were leaving this Thursday.  She honestly thought there was one more week.  She had bought a lot of food to cook for dinners this week and had made plans to do an overnight maintenance on Thursday.  Doh, kinda hard to work when we are on vacation, I mean technically she could do the work, but that would completely suck and I am not going to let her anyway.


Oh yeah, this is a note to myself.  I have therapy on Wednesday at 2:15 and Dr Wehbe on Thursday at 11am.  OK, those are in my head now.  Sorry to interject that here, but it helps me remember so ignore if you will.