Sick and tired, or just tired….

Pretty much wasted this weekend.  I didn’t do much of anything.  I watched a little of the Olympics, I played some Skyrim, and I slept a lot.  Oh yeah, I watched some DVRed wrestling too.  Now I am sitting here watching music videos while Teresa’s, who is sitting next to me in bed, is reading.  Variations on this theme have been prevalent all weekend.  While I sat here earlier, she cook us an amazing beef tips and gravy dinner.  I had mine over white rice, where she had hers over barley.  Not that what we had for dinner is particularly interesting, but that is what we had.


My brother is getting his blood drawn to send to Mayo tomorrow.  With this, we will, in turn, finally find out if he is able to be my donor.  I really hope he is able to be donor for me, but I went back over the paperwork (well digital summary) from the appointment on January 31st.  This appointment summary says they already started the search for a donor through the Be a Match registry.  That means we are already going to have to pay the 4000+ bucks for the search, even if Jim (my brother) is a match.  OUCH.  Well, we will owe it to the hospital and they will work with us as long as we make payments, this according to the social worker.


Teresa finally saw my new banner here.  I think it gave her a good chuckle.  She said I am allowed to use the phrase CANCER SUCKS if I want to.


Tomorrow I should find out if I can get dentist work done before I have to be up at Mayo,  We realized that it could potentially cause a problem, so I sent a message to my transplant doctor.  I really am in desperate need to have my teeth cleaned and a few cavities filled.  I also need a couple crowns replace, but I think those will have to wait.  They are not an emergency, and we might not have the time for a new crown to show up.


I have now read tons of info on the transplant and what happens after.  1 in 5 people do not get Graph Vs. Host Disease.  They get the transplant and go about life with no problems.  Well, I am statistically a weird person, so  I should be able to fit in that 20%.  Yeah, it’d be real nice to not have to worry about GVHD.  It could happen that way.  The odds of getting the really harsh GVHD problems are very slim.  Most people get minor GVHD that doesn’t bother them too much.  I dunno, with my luck, I will probably either have none or something severe, I very rarely ever fall into middle ground.


The chromosomal results from my bone marrow biopsy should be in Thursday or Friday.  That will mean that something will start happening.  There is still a lot to do before I can get the transplant.  And time is passing (albeit really slow for me).  The 6-8 weeks will be 4-6 on Wednesday.  I am pretty sure there will be at least 1 more visit before we go up there for the transplant.


Oh, I did make chili this weekend and thanks to Teresa’s incredible ability to throw in spices to make things better, it is probably the best chili I have had that I can remember.  I told her this and she asked what about in your childhood?  Well, they are all kinda mushed together in my head, so they don’t count.  So, to be fair to all the chilis I have had in my childhood, this is the best chili I have had in my adult life.  Good enough that Teresa added the recipe to the list of approved foods for the 100 days.


Yeah, the 100 days is still daunting.  Still probably the scariest part of the whole process.  100 days of following rules that I have never had to follow before in my life.  The biggest rule that we are going to have to contend with is “No food eating anywhere but in the dining rooms”.   Now for some people this is no big deal.  For us, a huge change.  We normally eat in bed, watching TV.  So this is a huge change.  There are more rules, but that is the one which is going to cause the biggest change for us.  Oh yeah, there are also “No TVs in the rooms”.  So I can’t lay in bed staring at the TV, gonna have to surf the web or READ.  Yeah, I know I can watch most TV stations on my computer.  But still it’s not gonna be the same.


Fatigue is still the word of the day, week, month.  I am completely wiped out from the minute I wake up to the minute I go to bed.  It’s very annoying.  I want to be able to do things, but I just don’t have the energy.  I think it’s all in my head actually, my head telling my body that it has no energy.  I don’t think it’s cause of the cancer.  Nope, I really believe that it’s because my mind thinks I should be fatigued.  I hate when my mind disagrees with my mind.  Teresa says its cuz my blood is not right, well that’s probably part of it.


Teresa is going to go bake a Southern Almond Cake.  It’s a new recipe for her.  I hope it turns out good for her.  Personally I won’t eat any of it.


Great 80s Hair.

Time goes by so slowly…..

Well, I wrote my transplant doctor a message last night asking for an estimate on when I will be summoned to come up to Mayo.  The response from one of his nurses was not an answer to that question.  She basically told me to wait and the doctor will let me know.  My concern is that the doctor will let me know by saying get my butt up there leaving no time for us to get the dogs to my family for eventually hand off to my mother-in-law.  He was the one who put the 6 to 8 week timeframe on it (now 5-7).  We just need a bit of advanced notice so we can get things done that need doing.  Now we probably won’t hear from him for another week or two.  Frustrating.


Time is crawling by, I honestly thought it had been 2 weeks since we were at Mayo, but it has only been 1.  The chromosomal study of my bone marrow biopsy is supposed to be done in 2 weeks.  So next week.  Also they are trying to identify a donor, which takes a while.  So probably next week too.  Let me tell you, the waiting totally sucks, and with time doing weird things, it just makes the wait longer.


Found out the our dogs need a certificate of wellness to travel to New York.  So more money to the vet.  But it’ll show that our dogs are in good health.  So if anything happens to them in New York, it is a new issue.   But we don’t think anything will happen to them other than them being upset about not being with us.


Trying to find out how prescriptions are going to be handled up during the 100 days.  That’s almost 4 months that I need meds for.  I can’t call down to Iowa and have them call up to Rochester to have them filled.  I need prescriptions filled locally up there.  I will figure it out.

Teresa has the same problem, but she is not a patient at Mayo, so I think she is out of luck.  Whereas I believe Mayo will take care of me.  I don’t think they’ll do anything for her during all this.  I think first thing she needs to talk to her doctors down here, then find doctors up there for the 100 days.  Really screwy, but I think that is how it has to work.


I feel better today, the flu like symptoms are totally gone.  Now the only difference between last night and the night before is that last night I did not use my CPAP.  Now, my CPAP is clean and disinfected (got it hooked to a SoClean2).  So it shouldn’t be causing me to feel sick.  Teresa things that the pressure is too high.  I just don’t know.  It could be all in my head.  Just when I started using the CPAP again I felt sick, when I stopped I feel better.  Not rocket science.  Just stop using it.


Fatigue is becoming a major issue.  Which is a sign of blood cancer.   I am sleeping a lot of hours again and when I am awake I am sluggish and ready to fall asleep.   This is keeping me from driving anywhere.  Drowsy driving is like drunk driving according to the new commercials on TV here.


Teresa is a list maker.  I am not.  I am a throw it together at the last minuter.  Teresa has like 4 lists of things to be done before the trip to Mayo.  I have what she has gotten for me and some things ready.  It’s not like we are going to have zero notice.  We are gonna have some time to get ready to go.   But I will help her with things on her list as she will help me throw things together at the last minute.  We work together that way.


Mood is good.  I am hoping that this good mood sticks thru the whole of the 115ish days.  Wouldn’t surprise me if it did.  I was in a good mood for my whole leukemia treatment back in 2015.  Sure I got depressed a couple days, but mostly I was just a happy patient.  I was a favorite patient of most of the nurses cuz I never complained about anything and only called the nurse when it was important.  And when I did see a nurse I was polite and friendly.  No trouble at all.


I have been writing this blog for almost a year.  WordPress keeps me informed of how many people read each post, I average around 10.  More if I have a cool sounding name of the post.  lol.  I sometimes get WordPress readers from people from countries I have never heard of.  Most of my readers come from Facebook though.  It’s all good.


All messed up with some place to go

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


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


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


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


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


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


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


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


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

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


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


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


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.


Down, but not out.

I found out that the entire time I SHOULD be in the hospital before the transplant is 10 days.  That is as long as they don’t decide I need a couple rounds of chemo before then.  10 days and then I check into The Gift-of-Life Transplant House for 100 days give or take a few.  It’s better than checking into a hotel in my opinion, even though some of their rules are a bit strange.

The 100 days is to catch any severe graph vs host disease issues and any bad infections.  I still am having problems getting my head around the concept of 100 days, it just seems like a long time.  I think Teresa has decided that she is going to be my primary care giver for the whole 100 days, which means my mom will just come and visit.   Leaving the Transplant House at 9pm each night (remember, I said strange rules).


My mood plummeted yesterday, I think all that is going on with this new cancer, all the changes that have to happen with my life temporarily and permanently has just overwhelmed me.  When I feel overwhelmed, I get depressed and try to shut down.  I was working on the list of stuff I need to take for the 110 days, that stopped.  I just can’t do it right now.  I got 5 to 7 weeks to get it together.  (a week ago I was told the transplant would be in 6 to 8 weeks).

Luckily, my mood will improve quickly, the joys of good mental meds that keep me stableish.  I get down for a day or three or four and then my mood pops back up.  Controlled Bipolar has it’s purposes.


It’s gonna snow today.  I’m not going anywhere.  I try not to go anywhere while it’s snowing, Iowa drivers drive me nuts while it’s snowing.  The roads all get slick and the drivers here just don’t know what to do.  Not all of them of course, but enough to make it very scary at times.  So I am just gonna stay home today.  The weather people are saying it could be up to 4 inches today.


Got phone calls to make today, Dentist and Shrink’s office.  Got to make an appointment for cleaning and stuff with the Dentist office (get it done while I can) and I need to inform the Shrink’s office about what is going on with the transplant.  I don’t need to see him, just let him know I am not going to see him for a while.


I am also waiting for at least 1 phone call from Dr. Alkahteeb (the transplant doc) with the first of the results from my bone marrow biopsy.  The rest of the results won’t be available for 2 weeks or so (the chromosome study).  He may end up calling me back to Mayo this week for more testing, I hope not but it could happen.


First we have to find a donor, hoping my brother can be my donor.  He has a 25% chance of being a match.  If he isn’t a match, we go to the national registry and try to find an unrelated match.  Man preferred over woman.  Younger preferred over older.  Performing the search isn’t covered by my insurance, so we will have to kick up like 4500 dollars for someone to fill in the blanks and hitting enter on a computer (actually I assume there is more to it than that, but that is the main part of performing the search).  We found a 100% match in 2015, but that match is no longer available.  So, we may end up doing a 2018 match, and doing the transplant with an unknown person.  It’s all good, as long as they match.


After we find a donor, we start making the plan and getting me ready for the transplant.  I thought the plan was already made, but there is some doctors on my “team” who think I may need a couple rounds of chemo before I go in for the transplant.  I don’t think I need the extra chemo.  I will argue against it.  —  Getting me ready for the transplant, I have to see a cancer psychiatrist and get a bunch of tests of my organ functions.  The cancer psychiatrist is just going to determine if I understand what it happening, my answer to that is “all too well”.  And the organ function tests are to give a baseline so when the mess me up, they can tell if things go wonky from GVHD.


Graph Versus Host Disease (GVHD) is the biggest concern about the transplant.  There is a whole lot of problems that can arise from the Graph attacking my body after transplant.  There is a slight chance that I will have zero GVHD issues.  I hope to hit that percentage.  But personally, I don’t know anyone who got thru with no GVHD, and I have spoken with a lot of people who have had bone marrow/stem cell transplants.  Anyhow, like I said GVHD is the biggest concern because it can cause a complete rejection of the new graph and then I will be dead.  Simple as that.  Rejection of the donor bone marrow/stem cells = death for Jeff.  Good news is that straight out rejection is very very rare.


Mentally I am borked right now, but physically I am feeling great.  If I hadn’t been told I have blood cancer again, I wouldn’t know.  The doctors up at Mayo warned me that it could/will change really quickly and then I would feel like crap.  Heh, until that does happen, I am going to enjoy feeling good.  Nertz to cancer.


THAT IS IT NERTZ TO CANCER


At least I feel pretty good…

We are slowly gathering the stuff we are going to need during the 100+ days we will be in Rochester after my transplant.  It’s a long list and luckily we have some time.  Teresa has decided she is taking her MAC with her when we go.  I don’t blame her, she needs an outlet to get away some too.  I, of course, will have my laptop which runs Skyrim which is all I will need in that arena.

It still seems surreal.  Can’t completely get my mind around having to stay up there for 3 months.  At least it’ll be during the spring and I am sure Rochester will be lovely.  It’s just that last time between hospital visits, I got to come home.  This time, home will be far away.


Oh yeah, for anyone who cares, https://www.gofundme.com/cancer-has-returned-we-need-help , I started a gofundme to try to get some help.  I feel like a total jerk asking friends and family and complete strangers for money.  But as I said yesterday, we are not going to be able to make it on what we have saved.  So, we gotta do what we gotta do.


We are hoping NOT to be called up to Mayo next week.  I think I need a break already.  The weather is supposed to be pretty bad between here and there for part of the week and I have made plans for the one good day of the week.  But if they call, we will go up there like a good little patient and caretaker and probably give more blood.  (my arm still looks like I have chiggers).


My mother-in-law has agreed to take our doggies for us while we are in Rochester.  She is driving the 11+ hours to my mom’s house, we will be driving the 6+ hours to my mom’s house with the dogs and then the dogs are going back with my mother-in-law.  It’s all good.  My nieces have wanted to meet Pucky and Mojo, and this will give them plenty of time to get to know them.


OK, due to my back problems, I lay in bed a lot.  I have now broken bed #4, this one lasted about 6 months.  In doing so, where I sleep has become very uncomfortable to sleep in, causing even more back pain.  Well, yesterday while napping, I discovered a weird angle across the bed, that doesn’t hurt my back.  I set it up with Teresa last night and I actually got 8 hours of sleep straight.  Miracle of miracles.  My back actually felt good when I woke up this morning.


You know what, I feel really good.  Kinda weird considering I have cancer.  I’m not particularly fatigued, I’m not whiter than normal, I have no weird unexplainable pains anywhere.  I feel good.


I am actually thinking that the virus I had at the end of December, beginning of January caused my platelets to crash and it freaked everyone out that my platelets got so low.  They were at 65 as of last Wednesday.  And I suspect they are going to go up further, back to the 90s that I was at before I got sick.  Now, if I had not gotten that virus, my platelets didn’t  drop,  I wouldn’t have traipsed up to Mayo, and this new cancer would never have been found, and I likely would have gotten sicker and died with the new cancer never being found or if found it would have been too late.


I’m slowly reading (the only speed I read at) all the pamphlets and papers that Mayo gave us.  They must have killed a small tree to print all this stuff.   Some of what I have read is pretty intense, but most is just information.  The book about stem cell transplants was particularly graphic in it’s descriptions of what is going to happen.  Look, I am all right with going ahead with the transplant, you don’t have to try to scare me into say no.  Really, when they start talking numbers, it’s a little scary.


Teresa is bummed about her work.  She has a bunch of big projects that she referred to as her babies.  Well, with her having to be my caregiver, her boss took all her babies away.  Now Teresa is going to be doing “boring and repetitive stuff”, when she can work.  Bah.  I feel guilty about this.


I have a lot of guilty feelings about this.  I know that these are illogical and wrong to have, but it doesn’t stop me from feeling this way.  I know I didn’t ask to have cancer again, but that doesn’t stop me from feeling this way either.  I probably should go see my therapist, but we really can’t afford it right now.  That is going to be the story of our life for the next 5 or 6 months, “we really can’t afford it right now”.


I will be okay, just not for a while.

Well, I will be getting a bone marrow/stem cell transplant in the near future.  The doc’s at Mayo are stumped as to what blood cancer I have now, but I have one that will kill me if I do not get this transplant.  The transplant doctor says it will happen in 6 to 8 weeks.  The blood doctors say I may need chemo before I can have the transplant so I have no clue as to if the 6 to 8 weeks is realistic.  I have the feeling that doctor A hasn’t spoken about it to doctor S.  Makes me think the “team” isn’t all on the field yet.


Yes, you read that right, I have a blood cancer that they can’t name.  It’s kinda like MDS and kinda like AML, but in it’s current state it is neither.  One doctor said I was unique.  I asked him if he meant weird.  He nodded.  We joked, we laughed, but this it serious.  If I don’t get a transfer I probably won’t live to see Christmas.


Mayo was much nice this time.  Even the big blood draw waiting room was pretty empty the 3 times I went there in 2 days.  22 vials of blood in 24 hours.  LOL, Vampires.  I have 1 good vein after chemo in 2015.  That vein looks like a pin cushion.  Actually the little red dots look like I got chiggers.  lol.


On the 3rd day, I got a bone marrow biopsy.  That makes 9 bone marrow biopsies in my life time so far.  A few more to go before I die I am sure.   Mayo gives you the option of being knocked out of it.  I took that option and blissfully slept through the procedure.  Weird that they do it on your side and hook you to oxygen, but hey, I didn’t have to feel the pressure or here the doctor grunt as the device used to collect the sample hits the bone.  It really doesn’t ache as much as the other ones did either.  I think I want all my bone marrow biopsies to be given by them for now on.


We found an incredible pizza place right near the hotel we were in.  It was New York style pizza, calzones, and Stromboli.  I just have to say if you are in Rochester and you like pizza, let me know and I will ask my wife what the name of the place was (I forget).  The food was incredible.


We also found the place we will be staying at for all the transplant visits up there.  The Gift-of-Life Transplant House is a non-profit house for people getting transplants and their caregivers.  You get a private room with its own bathroom in a large house just a couple blocks from the front entrance to Mayo.  They actually have 2 houses, at total of about 80 rooms I believe.  They only charge transplant patients 30 dollars a night and when I am looking at 100 nights after the transplant 3000 doesn’t sound nearly as bad as 9 or 10 thousand for a hotel.  Insurance will reimburse us the whole 3000, so it’s all good.


I know I should feel upset or scared or something, but I really feel pretty good about the whole transplant idea.  A little overwhelmed by it all, but nothing negative about it.  I heard what the doctors had to say, processed it as best as I could, and came to the conclusion that a transplant is what I need and there is no reason to worry about it now.  Maybe in 5 to 7 weeks (transplant is supposed to happen in 6 to 8 weeks) I will start worrying, right now we (Teresa and I) are trying to get things lined up for us to be gone as much as we are gonna be gone (especially the 100 days).


Teresa isn’t going to be able to work while I am recovering (those 100 days I keep talking about).  That is going to hurt us financially really bad, really really bad.  I don’t know how we are going to afford all the outpatient stuff the doctors told us about.  It’s going to be brutal on us.  We’ll figure something out.


This is gonna ruin on Teresa’s 45th Birthday and our 25th Anniversary.  Just sucks that this is all happening when it is.  I had such cool plans that are out the window now.  I have no idea what I will be able to do for those 2 important dates.   Speaking of important dates, I am also still gonna be laid up for my brother’s 50th Birthday party. DOH.  I really wanted to be there for him.


Speaking of my brother, he is trying to be the donor for my transplant.  He was originally told her couldn’t, but as my transplant doctor called it, that is hogwash.  So he is now waiting for the testing kit.  Hopefully he gets that on Monday and then gets it back to Mayo by Wednesday.  Then we would know.  Right now the not knowing is annoying.  Also annoying is that there is only a 25% chance he will be a match for me 😦   If he isn’t a match, we have to use the registry.  The registry in 2015 cost us 3600 dollars (insurance does not cover the search) so I figure in 2018 it’s cost will be well over 4000 dollars.  So I really hope my brother is a match.


I made a deal with Teresa, one that I totally intend to keep.  When this is all said and done and the doctor releases me to go take on the world again.  I will not go manic, I will not try to work, I will not try to go to school.  I will accept that I am a disabled dude and go back to sitting on my butt.  Now, this is going to be tough for me, I have no control over if/when I go manic.  But I think I have come to the conclusion in life that I have accepted that I will never work or go to school again.  Hopefully, when I get the green light to live my life that I fall back on the no work no school routine.


2018 is gonna suck, hopefully not as bad as 2015, but it is going to suck.


this video/song was picked by Teresa.