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?


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.


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


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.

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