Frustration reigns supreme

I mentioned this before here several times… my insurance will not pay for the bone marrow donor search and we will pay for it ourselves.  I verified this with the insurance company.  Teresa verified this with the insurance company.  I informed Mayo on 3 separate occasions, twice verbally, once in writing yet still Mayo is confused about why our insurance denied the donor search and is insisting that all it’s going to take is a letter from the doctor to get it approved.  Good thing I sent them a message asking what was going on last night or this would/could have gone on for another week.  So, I informed Mayo again that my insurance does not cover/will not pay for the Donor Search and we will pay it…  I wonder if they will grasp this concept this time, I sure hope so.


Again though, it was me asking them what was going on that got a response.  Again Mayo was just leaving me out of it all.  Frustrating.  As a patient, I am pretty patient, let things go as they will as long as thing run smooth.   But I don’t like weeks of not knowing what is going on.  And if there is a problem with my insurance, I think that is something I should know about.  And if there is some other hold up, I think I should know that too.  I do not think that is asking too much.  Oh yeah, and if we are just waiting a week doing nothing, let me know that too so I don’t worry that something is wrong.


Frustrated with the whole situation is what I am in case you couldn’t tell.  I have started taking 2 clonazepam at night so I can sleep.  I hate taking more meds, but I would close my eyes to go to sleep and all I would do is think about this and be up for hours.  The other benefit from taking the 2 clonazepam at night is it has fixed my sleep schedule pretty much.  I still have some fatigue, but not nearly as bad.  I am sleeping 8-10 hours at night, and maybe a nap in the afternoon or maybe not.  I physically feel better getting a good night’s sleep.


It’s another Publisher’s Clearing House award day where they aren’t coming to my house.  Started entering daily in 2014.  Did the mail entries every so often before that.  Yeah, I would love to win, but I know the odds are 1 in 3.6million or something like that.  I enter cuz it gives me something to do.  It was only 5 (or 6) thousand a week this time, not a huge prize, but it sure would have been nice considering my circumstances right now.  Oh well, there is always next time.  For the first time in a long time I do not know what the next prize is or the next prize date.  Heh.  It’ll be 3 months, it’s always  3 months, I wonder what the big prize is?  Oh well, if I win next time they can come visit me in the transplant house.  I won’t hold my breath.


I haven’t played Skyrim all week.  Just haven’t been in the right mindset to play.  My mind has really been on other things (understandably, I would think).  So now that I have a sort of answer to what is going on, maybe a little Skyrim tonight.  Dunno right now, I am too frustrated to play, that frustration might last a while.


Well, the goodish news is, with the delay at Mayo, Teresa has a chance to get over her flu before we have to go up there.  I was only sorta sick for 2 days, she got a full on flu and refuses to see a doctor for it.  She’s got a sinus infection and a bronchial infection and lord knows what else.  She is really sick.  She needs anti-biotics.  But will she see a doctor, nope.  And if we get called up to Mayo next week and she is still hacking and all sickly, we won’t be able to stay at the transplant house cuz if you are sickly, they ship you out so you can’t get any of the other guests sick.  Makes sense, but sucks for the sick one and their partner.—–I just reminded Teresa if she video calls a doc right now, she can get anti-biotics today and not have to wait til Monday.  Maybe she’ll do it.


Hmmm, lunch time.  I guess I will cut this off now with a video.


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?


The promised rewrite, not quite what I promised though

LOL, an curling athlete from Russia got busted for doping.  I really don’t know if that is just a bad on him, or its a bad thing on Russia as a country in the Olympics.  Let me explain, if I was the people in charge of Russian athletes going to the Olympics after the fiasco that happened at the last Olympics, I would make damn sure none of our athletes were using anything harsher than Tylenol (and not the stuff with codeine). So this moron curler using a drug that has been banned for a few years and gets caught.  Shines a bad light on him and on Russia I think.  But the worse part was it was CURLING.


Fatigue has practically taken over my life, the fact that today I was up at 3:30pm was a first in about a week.  And when I am awake, I am so tired, it’s ridiculous.  Doc warned me that I would experience “some fatigue” as things progressed.  If this is “some fatigue”, I would hate to see “a lot of fatigue”.  Friday night I went to bed at 11pm and Saturday I woke up at 5pm, that seems to be about normal for me right now.  I don’t think that the fatigue means I am getting sicker, just thinking things are changing internally.  It’s ok that I am sleeping all day for the most part.  I will fight it like mad when we finally go up to Mayo for testing, but here in Adel, I don’t make appointments before 4pm so I don’t have to drag my butt anywhere, I can be awake if I need to.  Fatigue in general sucks though, you sleep your life away.


Been so tired during the few hours I have been conscious every day that I haven’t played much Skyrim.  I had started yet another new character with intentions on actually playing him up to level 50 and beyond.  Level 50 is kinda the top, most of the followers stop leveling at level 50 and you should in theory have most of the big quests done I would think.  There is also a Gold Achievement for reaching level 50.  My highest has still be 42, no clue why I deleted him other than I got bored with him or Skyrim at the wrong time for him.  So this new guy I created I do have hopes for.  He is level 12 as of now.

Teresa wants to play Skyrim when I get too sick to play.  It’s all good, she can use my laptop to play if I am not playing.  It’s definitely a game she would like to play, it’s very much her style.  As I was playing next to her while she played Witcher III on the PlayStation, she kept comparing the games.  So between now and then I will show her how to cheat.  She asked me to do that, so I will happily do so.  I still think even with cheating she will die in the first dungeon a couple times, that first spider is tough and the other regular boss is tough, and the last dude is super tough until you figure out exactly how to play.


2018 is sucking so far.  My health has been crap since the New Year and its going to culminate in this transplant and then 100 days up in Rochester to see if I end up with serious Graph vs Host Disease.  And one more time for those that don’t know what GvHD is.  It’s where the new stem cells attack the host body.  Worst case, full rejection, I die.  No life support, no 2nd chance, full rejection, I die.  Very rare that it happens, but it does.  There are chronic cases and acute cases.  Chronic cases can be life long issues, the one I fear most is problems with your lungs.  Acute cases last as few weeks and then go away, not worried about those.  But whatever happens, if I survive, I can live with it.


Still have no clue how we are going to pay for everything.  GoFundMe has gotten us some money, but it’s not nearly close to what the social work said would have to come out of our pockets.  Want to put the GoFundMe blurb on the “You know your from Adel…” page on Facebook, just don’t know what to say.  I feel like a total jerk asking for money from friends, neighbors, and strangers, but we gotta do something.


So my Facebook promised rewrite wasn’t all fluff and good feelings.  It’s gonna end on a good note though.  Everyone should know I was a huge David Bowie fan…  Well, I found a cover of Heroes that I really like.  So here ya go


I HATE WAITING

I found out it was a 3 day weekend yesterday.  Tells you how much I pay attention to things going on in the world.  Seems that Canada has Family Day on the same day as we have President’s day.  So hello to my Canadian readers, I hope you have a good 3 day weekend as well as hello to my American readers, hoping your 3 day weekends are good too.

Being as its a 3 day weekend, the paperwork that arrived at my insurance on Friday won’t be in the system until Tuesday.  That kinda sucks as its going to put everything off an extra day or maybe even an extra weekend.  In case you haven’t noticed I am starting to get impatient about this whole transplant thing and just want to get things moving.


Last night Teresa and I went to Texas Roadhouse to celebrate our 26th anniversary of our first date, which was Valentine’s Day.  We didn’t go out on Valentine’s Day, cuz 1. It’s Valentine’s Day and 2. We were both really tired.  So we chose last night to go out.  It was nice, except they overcooked Teresa’s steak twice and undercooked mine.  But hey, we don’t go out for nice dinners very often and it was nice to get out.  So the company made up for the miscooked meat.  I love my wife, and I love that we have been together officially for 26 years.


I misread what Dr. Alkateeb wrote about the dentist.  I am now going to see the dentist on Tuesday.  Scraping and cavity filling… YAY RAH


I rejoined wireclub cuz I missed the few friends I had there.  If you chat on http://www.wireclub.com you can find me under the user name ClothinglyChallenged.  My little blurb says, Dance Naked let the whole world see your smile 🙂   Wireclub is a free huge chat site.  A little bit of everything is available to chat about.


Teresa is not handing the whole cancer/transplant thing very well I’m afraid.  She isn’t sleeping well and she is having nightmares when she does sleep.  Makes for a tired and somewhat grumpy wife.  She is writing a blog now, but it’s not for people consumption.  I hope that helps.  I think she is going to back on clonazepam real soon so she can disconnect and sleep.  Clonazepam is good for that.  She’ll get a doctor to prescribe her some, so she won’t be taking mine.  No worries about that.  Please, no one that reads this tell her that I told anyone about this, this is her issue that I wish I could help.


Having cancer again sucks.  No question about that.  I wish it wasn’t so.  I am just glad that it was found early enough for something to be done about it.  Dr. A said that if we didn’t deal with it soon it would morph into chemo-resistant leukemia and I would be dead in 4 to 6 months after that.  So the transplant will happen way before any morphing takes place.  The sooner the better in my opinion.  I’m ready to go tomorrow, but I understand everything in due time.


The lady who informed me that my brother is not able to be my donor mentioned casually that there were 3 matches in the donor database.  Hopefully 1 of those will be a perfect match.  Yeah, I will still have a greater chance for Graph vs Host Disease than if it’s been my brother, but at least I will have a 100% match which means less chance for outright rejection.


I got out all my Skyrim notes and the big book on Skyrim that I have, hooked up the speakers to my laptop to get good sound, got all prepared to play and meh, I don’t want to play right now.  Too blipping tired.  I slept on and off until 3pm, I shouldn’t be so tired.  Fatigue sucks.  Makes it where you can’t live your life.


Oh yeah, if anyone is looking to UP their credit score doing nothing really, open up a Fingerhut account.  They report good every month to all 3 credit reporting agencies if you don’t use it or if you use it per there terms.  They give you a credit line without looking at your current credit too.  So new or bad credit can get a credit line with no issues.  Just a friendly piece of knowledge I pass on to my readers.


WePay/GoFundMe was able to deposit into our Credit Union Account, so it’s all good now, we are getting the money donated to us.  It’s annoying that it wouldn’t go into the account we wanted it to, but hey, we are getting it now, so I guess it’s all good.


What a day

Well, after all the wait, my brother is not a match.  So he can not be my donor.  But according to the lady who informed me of this, they have a few preliminary matches thru the donor registry.  So whereas I can’t get stem cells from my brother, I should be able to get a 100% match soon.

I am bummed, my brother is bummed too.  I wanted to keep this is the family so to speak.  Now I am gonna owe my life to some stranger.  And what is worse is that the chance for Graph vs Host Disease goes up.  No, having my brother donate wouldn’t have been the proof again GVHD, but going from familial to stranger is a significant difference.


We verified today that our insurance does not cover the donor search.  So we are gonna have to pay for that (estimated 4,000+ dollars) and because my brother isn’t my donor, we are going to have to pay 25% of the donors cost of donating (no estimate available).  It sucks, if we lived in almost any other advanced country all this would be free.  Heh, we should have moved to Canada when I found my wife a job up there.


Mayo doesn’t let you talk to many people there.  You have to contact them thru a 3 or 4 sentence message system, 1 question or thought at a time.  I was a little frustrated (angry) today and all I could do is type in the little box.   But I did get an answer to my question (sorta).  Which led me to getting an answer to my question.


3 cheers for Anthem BC/BS insurance (I bet that rarely happens).  They were very helpful today, both to my wife and to me.  They are the ones who finally said that Mayo sent them stuff this morning and it takes 24 hours for it to get into their system.  Heh, if Mayo would have said they sent it today I wouldn’t have gotten so angry.  But it’s all good, things worked out, no one got yelled at, and I feel considerably better now.


I can’t believe we are down to 4 to 6 weeks (legitimately this time) until the transplant.  That’s still assuming everything goes according to plan.  At some point I have to go up to Mayo to get all my organs tested.  We still have to take Pucky and Mojo to my mom’s house for pickup by my mother-in-law.  I hope to get to stay a couple days there, just in case the worse happens to me (not trying to be morbid, trying to be practical).  Not sure what else we have to do before the transplant but I am sure there is more.


It’s be a weird couple of weeks though.  We have heard nothing from Mayo that I haven’t initiated.  We feel a little lost in limbo at this time and have no idea if this is normal.  Don’t really have anyone to compare notes with.  So, hopefully now that Mayo sent the paperwork to the insurance company, things might just get moving.  That would be super nice.


Oh I do have to say thank you to one person at Mayo.  Erica, the social worker on my “team”.  I called and left a message around 11:30am and she called me back at 2:30pm, not too bad.  Just everything that was falling apart got put back together before she called back, so I thanked her for calling back and said I didn’t  need her help right now.  But big bonus for having a direct line to her on her business card.  Every other card I got goes to a switchboard that may or may not get me to the right person.  And by the way, there are 2 Dr. Shin’s in the Hematology department.


I also got the results on part of the chromosomal test on my last bone marrow biopsy.  Basically 3/4th of my bone marrow is messed up or missing pieces.  Very bad, very much showing cancer.  They still don’t know and may never know what kind of cancer.  I personally don’t care to know because it makes no difference in how it’s to be treated, transplant.


Talked last night to a guy who was 8 months past his bone marrow transplant.  He said it wrecked him and he still hadn’t recovered.  I still plan on at 8 months, going to Thanksgivingfest.  Which means I am gonna have to be up off my lazy butt walking or stationary bike riding every day.  Getting some stamina back.  I know I won’t be able to be conscious for a 16 hour day like normal Thanksgivingfests.  But since it is being held at Bruce and Cori’s this year: We don’t have to go anywhere and everyone knows this is going on and they will let me crash early.  It’ll be fine with the Gang.


Definitely June and September visits are NOT going to happen.  Not that I wouldn’t want to come to the Region, just that I won’t be able to.  Simple as that.


Anyhow, love to anyone who reads this.  I’ll try to keep you all up to date on happenings thru this whole mess.  Peace.


Happy Anniversary, Baby…26 years

Today is the 26th Anniversary from Teresa and my first date.  I was already in love with her by this time, but this weekend date sealed the deal for me.  Teresa, I love you more today than I did 26 years ago and I love you more and more each day, which is hard, cuz I love you with every fiber of my being.  We can not like Valentine’s Day, I am so cool with that, but let us rejoice in the celebration of our 26 year love.  I wish you read this, maybe you will.  I would have married her that day, it wasn’t for another year and a couple months before that happened.


Well, my brother’s blood got to Mayo yesterday.  Now we wait to find out of he is a match.  For having blood cancer again, the whole process is going so much slower this time.  We are doing a whole lot of waiting.  Last time I had blood cancer, things moved so fast it wasn’t until 3 days into chemo did it really hit me that I had leukemia.   This time, I have so much time on my hands that it’s driving me crazy.  Hopefully we will know about if my brother is a match by Friday.


Fatigue is still my major complaint.  If I am not sleeping, I am dragging my butt around doing barely enough to get by.  I’m just tired all the time.  It’s annoying.


I never did go get that blood test to find out if I could go to the dentist.  I chose not to because I was too tired to drive.  I wouldn’t have had 15,000 neutrophils anyway.  I went over several of my past blood tests, and whereas I had 7,000 at one point and 2,000 is considered the bottom of average.  I have not been near 15,000 in a long time.  SO, it would have been a waste of time and money to get that blood test.  Hopefully after the transplant and recovery, I will be able to get my teeth cleaned and my one tiny cavity filled.


The weather today is going to be beautiful and a lot of snow is going to melt.  It’s supposed to be sunny and 44.  For the middle of February that is really nice. And after all the snowy days we had, it’s nice that it’s not snowing.


I am afraid of going out into the world.  I can not afford to get the flu at this time.  And since apparently there is a really nasty flu going around (according to the news), I am going to just stay in my house.   Yes, I got a flu shot, but this flu going around right now is still hitting people who had the flu shot.  I already had the flu once this year, I surely don’t need it again.


Oh for the record, Vitamin B6 tastes NASTY.  Yeah, my B6 was low and Dr Alkhateeb said I needed to go on B6.  So I ordered some from Amazon as I am apt to do.  Then when I took the first one, it was one of the worst tasting pills I have ever had the displeasure of taking.

I’m going to start taking my pills with apple juice instead of water.  I think the strong flavor of apple juice will cover the taste of B6.


This is weird, I do not normally get hungry for or eat breakfast, but here it is 8:15am and I am very hungry.  After I finish this entry, I will go forth and grab something to eat.  Either that or take a nap.  I wonder what we have to eat that I am not burned out on?


WePay the payment company for GoFundMe is having issues depositing into our bank account.  Most annoying.  All they are saying is that there is a problem, but not what the problem is.  So I emailed them yesterday and am waiting patiently for the response.  I did call my bank and they checked and double check both their and my actions and nothing wrong on their or my end.  So, the problem is definitely by WePay or GoFundMe, neither of which has a phone number to call.  I hate waiting for emails, not as much as I hate waiting for returned calls, but either way it’s really annoying.


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