Insurance Approved, Tentative Date Set

As I said on Facebook, it has been over 60 hours since I last slept.  Had a weird but not unheard of reaction to Centrum Men’s Multivitamin.  I slept like a baby for the first two nights taking it, since then I have been awake.  Insomnia is definitely not new to me, however insomnia with an actual verifiable cause is.  But seriously, if anyone was going to have such an extreme reaction to 3 Multivitamin over 3 days it would be me.  Dr. Alkhateeb is going to be upset, he is the one who told me to that the Multivitamin.  This was definitely a mistake to do.  I agree that I should be taking some vitamins, but obviously not a super Multivitamin.


Tomorrow I have a blood test/appointment with Dr. Wehbe, the oncologist who saved me life the first round of Leukemia.  I finally get to tell him about the pending transplant.  I mean he knows but doesn’t know the details of what all has and is going to happen before the transplant.  And I think he has the right to know.  I also have to make sure that he understands that no one did anything wrong when the chromosomal stuff was missed, I misunderstood Dr Alkhateeb when we spoke the first time.  Chromosomal stuff is not normally checked on a bone marrow biopsy unless the patient gives a clue that it should be.  I was so typical AML that there was no reason to check.  So, it’s all good.


I just got great news, insurance approved my transplant.  And they have a tentative date for day 0 (transplant day) of May 17th.  Yeah, buddy.  Color me happy.  It puts my 100 days ending on September 1st.   So maybe, just maybe, I won’t miss Fall.


Tomorrow also we head back to the Gift of Life Transplant House and then Mayo early in the morning on Friday.  Who schedules appointments at 6:10am?  UGH.  Anyway, it’s just a 1/2 day visit at Mayo and then we head home.  Just a blood test, the Renal Exam that I failed before, and a meeting with the cancer shrink.  No worries here, it’s all good.


The wind is howling, it’s been raining all day, supposed to turn into snow.  Today is just a yucky day outside.  Tomorrow is supposed to be much nicer.  And next week is finally supposed to look like SPRING 60+ degree days.  Woot.  I will get a week or two of Spring before I have to report to Mayo.


Pucky and Mojo will be heading to the Region on the 28th and 29th or the 5th and 6th.  Next weekend or the weekend after.  Probably the weekend after would be my guess.  I have to be taking meds at the hospital on the 8th (chemo starts on the 10th I believe).  So time is running out to get the dogs to my family in Portage.  Heh, no worries, we’ll get it taken care of.


My mom is making the trip up to Rochester sometime during the week after transplant, when I will be totally a lump.  But hey, she wants to check on her baby.  I would never tell her not to come.  I assume there are flights from O’Hare to Rochester.


So tired, and my thumb still hurts, so I am gonna cut this short.  Got great news today, so happy to share it here.


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”

Too much Anxiety is not a good thing

Anxiety has been a total beast today.  To the point where it’s making me physically ill.  I’d puke if I was able to (long story as why I can’t puke).  I just want next week to be over.  24 tests of appointments in 4 days is a lot.  I think a normal person would be feeling some anxiety over this, and I am far from normal.  For the new readers, I am bipolar and have a plethora of anxiety disorders, this is a big deal for em.  Anyhow, I know it has to be done, so I will do it.  Anxiety be damned.  I took an extra clonazepam today which has helped a little but makes me so fricking drowsy.  Bad enough to have cancer fatigue but to add med fatigue to it, it’s being rough staying awake.


Teresa is going to Palmer’s Deli to pick up dinner.  I’m not a huge fan of theirs, but hey gotta let Teresa get the dinner choice win from time to time, right?  I am getting what they call a sub, which is hamg, turkey, salami, lettuce, tomatoes and red onions (I think that’s it.  I get it -red onion and plus mayonnaise.  Oh, it’s served on ciabatta bread, so it’s all good.  Plus is get a huge rice krispie block, so it can’t be all bad.  Might have ordered soup tonight but Teresa has to stop at the store tonight, so whatever we got had to be able to sit out in the 20something degree weather for the time she is at the store, so no soup.


Still very happy about the nothing necklace Teresa got my for our anniversary, sometimes soon I will post a picture.  Just being lazy about taking a picture right now.  I mentioned this necklace the other day.  A little history this time.  My original nothing necklace was bough around 1993 when I was buying accessories for my SCA garb.  I decided I liked it and began wearing it just about everywhere.  For years, if you saw me I had on my nothing necklace.  At the time the nothing necklace was a bronze ring on a leather necklace, Keria (my chow at the time) ate the leather, so it was replaced by a strap of lingerie.  I wore this for a long time, not quite sure why I took it off or subsequently it got lost.  But lost it is for now.  A lot of memories are attached to that necklace.  Mostly good ones.

Come our 25th Anniversary, Teresa went and bought me a solid silver nothing necklace.  Just a silver ring on a leather necklace.  Memories came flooding back, like I said mostly good ones.  It means so much to me.  I love her so much, I can’t love her more, but if I could I would for getting met his necklace.


Tomorrow I am gonna watch Supercard of Honor on the Honorclub by Ring of Honor.  Should be a really good show.  I am actually thinking I might be more looking forward to this wrestling PPV over Wrestlemaia on Sunday.

Sunday is the biggest card of the year for the WWE.  Unfortunately I won’t get to watch all of it live cuz even though my ipad has cellular, there are cellular dead spots on the way.  But they put it on the WWE network a couple days later, so its all good.


I had to bail on my first book attempt.  It was good while it last 7500+ pages, but it was too tough to write about Washington DC without having exacting knowledge of the area or at least having been there once.  So Bryan McKinley will never be there hero he deserves to be.

I know I said the Orcs, and Elves, and some such was BORING.  But hopefully my new book attempt won’t be rehashing what has already been hashed.  My new book, so far, is about an Orc who got knocked out and missed the whole battle.  I am only 750 pages into this one (having started it today while dealing with a lot of anxiety).  But it’s flowing pretty good in my opinion.  At this point I have no idea where he is going, but hey, he’ll tell his story.


The updated weather for our trip Sunday is the same as it was.  Snowy and Windy the whole way.  Gonna take us 5 hours I bet to do the 3 1/2 hour trip.  Not looking forward to the ride, so glad Teresa does the driving.  Did I mention that the Winds pick up the further north we get.  Yay rah.


I have 24 tests or appointment in 4 days next week.  A lot of rushed meetings.  But it’s all good, most are in the same buildings.  I am dreading the bone marrow biopsy #9 and the Spinal Tap the most.  I am curious to see what a cancer psychologist will have to say.  I still wonder what happens if I fail one of these tests, do they tell me No transplant and I am just doomed to die from AML?  Interesting question.


I haven’t played any games for a few weeks.  Just having felt like it.  I’m chatting with my bipolar buddies a lot more over at Edwinas.  And on Thursday nights I do my Acute Leukemia chat.  Sleeping a lot, so I get up and start writing or have lunch and then start writing.  Today was just weird cuz of the Anxiety.


Well, Teresa should be home soon, so I’ll go now.  Music this time….


Apparently things start next Monday

Got a call from scheduling at Mayo.  Monday morning, bright and early, did I mention EARLY is when things start, I pick up my test schedule package and then meet my transplant coordinator (didn’t know I had a transplant coordinator, but it makes sense to have one).  After that I visit the dentist.  Then that afternoon my 9th Bone Marrow Biopsy.  Then I will be starving cuz I won’t have anything to eat after 7pm the night before.  This will be our first visit staying at the Gift-of-Life Transplant House (we were gonna try once before but Teresa had the flu).  A nice 4 night visit to get the feel of it.


Now I am having a little anxiety about this whole thing.  This transplant has become more real to me.  I guess it could be worse, they could say I was screwed and just gonna die.  At least the transplant gives me hope for some for of real life after it.


The 4 things I am most scared about for results of the transplant are:

  • Death, the obvious one.  It’s possible for the graph to totally be rejected and me to just die
  • Loss of who I am.  It’s possible to have a complete personality wipe, and a complete mind wipe.
  • Lungs Hardening.  Yeah, I was asthmatic as a kid, don’t want to go thru this crap again.
  • Blindness.  I am too old to learn brail.

Any of those things has a slight possibility of being an outcome of the transplant.  Scary stuff.  But in reality, the chance of any of those happening is very VERY slim.  Most likely I will have a little Graph vs Host Disease and then get on with life.


OK, enough about that.


I have finished reading a book on Dialog, a book on Plots and Structure, and finally a book of Characters and Point of View.  I feel much more educated on the art of writing.  I think I am ready to seriously tackle writing a book which is something I have wanted to do for years.

I started a book a week or so ago, got 21 pages down, but after reading 2 1/2 of those books, I realized that it was drek.  So I deleted what I wrote.  Now I am ready to start again.


Still bummed that I won’t be able to do Thanksgivingfest and the Thanksgiving  I had planned on doing this year.  I guess it is going to be me and Teresa and a turkey this year. Much like it was in our early years together.


Oh for those that haven’t heard, today is our 25th wedding anniversary.  25 years married and we are still happily together.


Another short blog.  Don’t have a lot to say right now.   Just wanting things to be done and over with if you get what I mean.

Complete with Chili-Cheese Fries

My platelets tanked again, on Thursday they were at 11.  Chris, my PA, have a mini-freak out about this and called Dr. Wehbe’s office who, in turn, set me up to get platelets on Friday.  We arrived at the infusion center 10 minutes before the appointment time (cuz I knew I had to do the whole check-in procedure).  And we sat.  We sat out in the waiting area for a good 20 minutes before they called us back.  Finally got called back, got the IV hooked up, made some funny jokes, chatted with a few of the nurses who remember me from Leukemia Round 1.  And then I waited.  Turns out that the hospital was OUT of platelets.  It was finally 2 hours later when the nurse informed me that the platelets had arrived and off she went to get them.  Getting the platelets was nothing special except they were really cold going in.  45ish minutes later, I was out of there.  Hopefully this infusion is the last one I get until transplant time.


Dr. Wehbe’s office faxed Dr. Shin, Dr. Shin doesn’t want my information any more.  He called me and politely informed me that Dr. Alkhateeb is the one things need to be faxed to.  I had already had Chris fax the results of my CBC to Dr. A.  So the call was really unnecessary except to let me know to tell Dr. Wehbe’s office to only fax Dr. A and not Dr. Shin.


Next week I find out “THE PLAN” as far as the transplant goes.  Whether that means Monday or Friday or in between, I don’t know, just “next week”.   I am anxiously awaiting this plan.  We have things to add in between parts of the plan (like getting our dogs to my mom and brother).   This plan will give a more real feel to this whole procedure, until now, it’s just seemed like it could be happening to anyone, if that makes sense.


I have felt like crap since the platelets.  Might be coincidence, might be some weird reaction.  But feeling like crap wasn’t the goal.  My head is pounding on and off (Tylenol has helped this) and I have a general feeling of crapiness.  Can’t really identify anything as wrong, just don’t feel well.  Oh wait a minute, I started a new blood pressure med, and I always feel crappy after starting a new blood pressure med.  That is probably why I feel so rotten.  Just coincidence.


I still haven’t played my Train game.  Yeah, I keep saying I am gonna.  Just haven’t for one reason or the other.  Now I think I am going to save it to have something to do during recovery.  There are going to be many hours of just sitting around doing much of nothing.  100 days is a long time to fill with stuff.  A new game might just fill a good chunk of that.


I haven’t played Skyrim in a couple weeks.  I don’t really know why, just haven’t felt like it.  Lots of hours have been logged into Skyrim, so I don’t think I am gonna just get up and walk away from the game.


I’m thinking of trying to write a sci-fi/fantasy story.  I have what I think is a good idea in my head.  Been having dreams about this story.  Just have to get over my thing about writing dialog…. when I have written stories before, the dialog always sounds corny.  There is going to be a lot of dialog in the story I am gonna try to write.  So, either I fix it, or I let someone else in on my concept to help with the dialog.  Oh well, right now it’s just a jumble of an idea in my head.  Maybe tonight or tomorrow I will put something down and maybe make an outline.  I assume that is what authors do.


Teresa cooked 2 types of chili tonight.  I was going to cook 1 of them, the traditional Campbell chili, but she knew I wasn’t feeling well, so she made that.  Then the 2nd chili is like Del Taco’s.  Or at least what we remember Del Taco’s to be like.  Since we live 100s of miles from the nearest Del Taco we have to go by memory and not actual.  But tasting her chili brought back memories, and its gonna be delicious over crinkle fries and with nacho cheese.   Yep, we are gonna go there, Chili-Cheese Fries inspired by a craving for Del Taco.  Heh, it’s only been 15 years since we had Del Taco.  Now, those of you who read this who are lucky enough to have access to real Del Taco Chili-Cheese Fries, have some for us.


Now if she could only replicate Carl’s Jr Western Bacon Cheeseburgers, we’d be very happy.  The Western Bacon Thickburgers that Hardee’s comes out with every so often just aren’t the same.


 

Stupid Insurance Company

Teresa is writing a letter of appeal to our insurance company appealing their decision to not pay for the stem cell donor search that I need to live.  I have tried to write it a couple times, and all I have really come up with is garbage, so I will leave it to the professional and then just sign my name.  It’s really stupid that our insurance doesn’t pay for this search, my transplant doc was livid when he heard this.  It’s not like it’s optional for me, it’s either I get a transplant from an unrelated donor or I die.  Heh, seems pretty cut and dry simple to me.  I can’t think that insurance companies would intentionally be out to screw the blood cancer patients.  Hell, since it’s a privately funded insurance policy, I might be their only blood cancer patient.  Heh.


Tomorrow we are heading to Rochester, Minnesota for a blood test and visit with Dr. Shin on Friday.   This is a truly unnecessary visit but he seemed pretty adamant that I come see him.  So off we go.  The good news is we will be back home Friday evening.


There isn’t supposed to be any snow for the next two days.  So, that is a good thing too.  I would hate to do the 3 1/2 drive (OK, Teresa drives) if there was snow falling.  The 35 looks like a road that snow just blows across.  You know the 35, it was on the national news a few weeks ago for 2 major accidents cuz a lot of people around here do not know how to drive on slick surfaces.


I feel like complete and absolute crap.  Fatigue out the ying-yang and a massive headache for who knows how many days its been now.  Put these two things together and you get a totally crappy feeling.   Hoping that my platelets are 10 or below on Friday (gonna really suck and be 14, just watch) and I will get a platelet infusion.  That should help with both of the issues.  Definitely with the headache.


Teresa gave me a Maxalt in hopes of stopping my headache.  She switched to caffeine pills for her migraines (which are working great according to her).  Yeah, Maxalt is a migraine medicine, not sure if it works on lack of platelet headaches, but I was very willing to give it a try.

If Maxalt fails, I may bust out my last shot, I know from earlier use that the shots do lessen the headaches for a while.  The one tonight is a doozy, so lessening it might make it bearable.


Due to circumstances beyond our control, my mother-in-law will be unable to take care of Pucky and Mojo while we are in Rochester.  Thankfully, my mom and brother have agreed to take care of them for us.  So instead of them having to travel all the way to New York they are only going to have to ride with us to the Region.


Speaking of the Region.  Teresa and I will be in the Region, for a few days at least, when we drop off the dogs.  We do not know when this will be for sure.  But I will post here and directly on Facebook travel plans so any of my Region friends that want to see me before all this transplant business will have a chance to do so.


Also, any of my Des Moines area friends, if you want to see me before we leave for the transplant, let me know and if I am up to it, we will do lunch or something.


A friend of mine invited us down to Houston for a visit.  Right now we might not be able to afford the medical treatment in order to save my life.  How in the Hell would we be able to afford a trip to Houston?  I know her heart was in the right place, but there is just no way we could do it.  Plus I feel like crap.


Gonna cut this entry short, head not cooperating.


and Cori, I know you don’t like The Offspring.

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?