Day +62

38 days to go, but who is counting?

Teresa went to see her pain doc in West Des Moines today.  Yup, she drove 3 1/2 hours just to see her doc, he kinda forced her to, so she had to.  She plans to drive the 3 1/2 hours back today and be back before it gets too late.  7 hours is more than I would want to do in a car these days.  I can hardly handle the 6 hours from our house to my family in the Region.  But Teresa is a driving machine, she can do the 7 hours and just be a little tired from it.

Turns out on top of everything else, I am anemic.  Doc wrote me a prescription for Folic Acid, I in turn ordered some from Amazon.  Doesn’t do squat for my cold, but if it makes him happy to make me human colored again, then hey, who am I to argue.  I kinda like vampire pale.  Just wish I could breathe normally.  This breathe one, cough two business is for the birds.

Heck, looking at the clock, Teresa is probably 1/3 of the way back already.

Mom is here babysitting me.  They (the Gift of Life People) could care less who my caretaker is.  They just had mom wear Teresa’s name tag.  And off Teresa went.  Mom has been sitting here reading for the last several hours cuz the internet still sucks here.

We did take a break from reading/playing non-internet games for lunch.  We ordered from Toppers Pizza.  It was real good. Much better than the first time Teresa and I ordered from Toppers, where the pizza was overcooked.  The pizza was perfect. And everything else was good too.  And the pizza was 51% off, don’t know why, but who am I to argue with discounts.

Did I mention that I am 38 days from getting out of this joint, hopefully?  Getting closer and closer.  Having to have my birthday here sucks.   I wanted to be home for it, but with this fungal cold, I am just hoping to not be in the hospital for my birthday.  Surely Dr. Alkateeb can cure a fungal cold in 3 weeks.  And if it’s not a fungal cold, surely he can identify whatever it is and cure it in 3 weeks.   I have the utmost faith in him as a doctor.  Really, I do.

I was feeling pretty good earlier, but as the day has gone on I am feeling crappier and crappier.  I figure by tonight I will feel super crappy again.  Last night I almost volunteered to go to the hospital.  I hope I don’t get feeling that bad again tonight.

I’m gonna end up using reddit/r/lfg to find 2 more players for my D&D campaign that I am starting in September.  I still would prefer to use friend of friend/acquaintance  of friend but no one is having any luck finding more people.  So, complete strangers it is.  Heck Danny and James started out as complete strangers.  Now I consider them good friends, Chris too although he is too busy to join us in playing this campaign.

I guess every new friend you make at one point was a stranger.  Anyhow I should have no problem finding 2 more people who want to play.  Reddit has quite the busy board for looking for game.  I should get 10 or more responses from 1 advertisement.  Then it’s picking out the ones who would fit in best, that is the hard part.

I will set out to find 2 more people for the September game when I find out my chemo schedule in August.  Don’t want to put the proverbial cart before the proverbial horse.  Once I have my schedule, I will be able to set down a schedule of when we will be playing.  Easier to recruit when you know days and aren’t “sometime in September””sometime in October”.  Since I have 5 months of chemo coming up starting probably in September, have to work around that schedule.

Listening to LiteFM (4CD set) and enjoying it with my mom.  She is a country fan, but can appreciate soft rock.  And  I have always enjoyed soft rock.  And there is enough of the in between stuff to keep us both happy.

Mom leaves for home tomorrow.  I feel bad that I was too sick to really do much of anything while she was here.  We did have ice cream for dinner.  We did have Chinese overload.   We did have excellent Mexican.  And we did have excellent Pizza and Wings.  Pretty sad when an entire visitation is broke down in to what you had for dinner.  Oh well, that is about all I had the energy for.  Eating.  Prednisone feeding trumps icky aches.

Teresa just texted me that she was about 2 hours away.  YAY.  I missed her today.  Even though she needs a real break from taking care of me, I still prefer her being my primary care person. She just knows my every move.  That is what 25+ years together does for you.  I love my wife with every fiber of my being.  I miss her when she isn’t around.

Feeling kinda rotten, so I decided to rock some most hated songs.   I haven’t listened to the list, so it might be wrong, but it’s the thought that counts, right?

Day +61

39 days to go.  Probably spend em all with this stupid cold.  According to my doctor my viral cold has turned into a fungal cold which is much more dangerous and harder to treat.  He is talking about putting me back in the hospital.   I, of course, don’t want to go back in the hospital, but if that is what it takes to finally get rid of this cold, I’ll do it.

He talked about (I forget what he called it, and it is kinda gross) putting me under lite sedation, sending a camera down my throat, putting saline in my lungs and then sucking all the gunk and saline out.   A little extreme for a cold I think, but again if it’ll finally  get rid of this cold, I’ll agree to it.

I woke up at 7am this morning, wide awake.  It’s just now 8 as I am writing this blog entry.  New CPAP program works wonders.  The old CPAP choked me, the new one helps me breathe.   I am getting a much better nights sleep (around the coughing).  Wish I had come up here 2 years ago when I got the damn CPAP in the first place, maybe I wouldn’t have had to go thru CPAP hell first.

Teresa is driving to Des Moines and back today.  Her pain doctor demanded she come in and see him before he’d write any more prescriptions.  So off she will go.  She is driving down, seeing the doctor, then driving back.   Only 7 hours on the road.  3 1/2 each way.  Not too bad.

Mom is stepping in as  my caretaker today.  Hopefully I  won’t need caretaking.  No, I am not saying mom couldn’t take care of me, I am just saying hopefully nothing goes wrong and I don’t need caretaking.

Can’t start any new course of treatment until I am over this cold.  We cut prednisone by 20mg again.  Not a new course, same course.   BORING.  I want to get on with this.  Dr. Alkhateeb might be too cautious of a doctor for me.  But he gets good results, so who am I to question him?  It’s just sitting here week after week, day after day, doing the same old thing.  OK, the cold has thrown a monkey wrench into all his plans.  Maybe I am not being fair to him.  I’m just getting bored silly doing nothing.

Yesterday they ran a whole boat load of cultures on me.   Which means they took a lot of blood from both of my port things and from my arm.  They are trying to find out for sure what is wrong with me.  Those results should be in already.  They also did the CHIMERA test, which shows how much of the new stem cells have control of what.  Last Chimera test showed 100% German, they said that was odd should only be like 85-90% this time.

I feel like drek.  Been sick too long.  Not getting better. This sucks.  The transplant itself went great. I couldn’t have asked for a better outcome.  Even the GvHD that I have had hasn’t been that bad.  But viral pneumonia followed by a fungal cold just plain sucks.

I’m done whining.  Let me find some music.

Day +57

Vidaza is the chemo I will be going on soon. Vidaza reads like a light weight chemo, not too many side effects and the ones it has aren’t that bad.   I guess I surrender and give up and all that and am prepared to go on with the “bump” chemo.  I still don’t want to have to get it, but Dr Alkateeb pretty much sold Teresa and thereby me on the whole need more chemo thing.  Seems that I am at an extremely high risk of getting AML from this MDS.  Even though I should be “cured” after all the previous crap.  So, starting soon (like next week maybe) I should start the Vidaza or something towards progress, this spinning my wheels every week is getting annoying.

Looking forward to dinner tonight.  Carlos O’Kelly’s was a favorite of ours in Central Iowa, but they closed down both restaurants there.  I thought they were gone for good, but lo and behold we drove right by one on the way to dinner last night.  They didn’t disappear, they just disappeared from Central Iowa.  It happens.   It’s sad.  But if the local one here is anything like the one I remember I’m gonna eat happy tonight.  And yes Jenny, it does feel good to be getting out and things are getting better (with the exception of more chemo).

I’m really trying to keep a positive mood thru this whole mess.   Not always succeeding in doing so.  I’ve had my ups and downs.   Now I Just want it to be over.  57 days is long enough if you ask me.  I know I signed up for 100, but c’mon gimme a break.   I don’t have any signs of GvHD acute or chronic as of now.  Maybe I can convince Dr Alkateeb that I should be able to go at 70.  I should be off Prednisone, the cold should have run its course, I won’t have any new GvHD (I’m pretty sure of that).  It’s time to let me go or real soon to time to let me go.

Stupid cold got everything screwed up.  3 weeks where I could have been working on Dr Alkateeb where instead  I was coughing and wheezing and all around sick.  I am at the end of 2 weeks of the 3 they said it would take to get thru this cold.

My mom and brother decided to do something really cool for us.  They are gonna bring the dogs to us when I get free.  We won’t have to drive to the Region.  I won’t have to deal with the cats (can’t be around cats right now).  This is so cool of them.  will take a day or two longer to see our doggies, but I’ll get to see a little more of mom and Jim without expending energy I don’t have to expend.

I wish I was gonna be able to make Thanksgivingfest and Thanksgiving, but both hosts have cats (still won’t be able to do cats in November) and I won’t have my baby shots til late November/early December I believe.  So instead of partying, it’ll be Teresa and I and a turkey breast and all the fixings on Thanksgiving.  Nice.

I took Teresa to Denny’s once for Thanksgiving or Christmas (One of the big holidays) and it was so depressing.  All the lonely people eating alone.   I warned her ahead of time that it would be like that, but she wanted to go, so we went.  Never again were her words.  She will always MAKE us something for the big holidays.

Oh, I almost forgot, bringing this back to a down beat (sorry).  When I go on Vidaza it is going to try to kill all the active cells.  Which means more platelets and more blood.  I really don’t want to do this.   Dr Wehbe said there is a physical limit to the number of infusions you can get, I wonder what that limit is and if I am close.   Oh yeah, Dr Alkhateeb is gonna hand me off to Dr Wehbe for most of the Vidaza getting.   That is how they keep you 100 days or less and still get to treat you for a long time more.

Oh yeah, I am not getting my plantar’s fasciitis taken care of this trip either.   Not enough while cells to fight off a potential infection in my heel and I don’t want to risk it.  So by my choice, I didn’t even ask.

Day #56

Today I managed to not have any appointments (except early morning blood draw) until 3:30pm.  It’s 2 now and I am just sitting here doing nothing.  My phone chirped that I had a 10:20am appointment with the infusion department, but that was obviously a mistake cuz I have been drinking enough and that is the requirement to keep me away from the infusion people.   Plus my phone showed no appointment, just chirped that one was there.  Odd.

My brother is very anxious for us to come get our dogs.  Trust me when I say we are anxious to get our dogs back.  I am supposed to be sprung from here August 25th and we are planning on going and retrieving our dogs on the 28th (I think) or the 29th.  Teresa has to work, so we have to wait for the weekend.  I’m sure mom and Jim understand.

I’ve started collecting players for my D&D game starting in mid-September.  I need 5, I have 3.  I have, however, ran out of friends who might want to play with us.  So, I appealed to the 3 I have to help me find 2 more.  I don’t want to use reddit to find players because you never know what you are gonna get.  I would like to have friends (or at least acquaintances) of friends to sit around the virtual table.  I just need 2 more people, I don’t care if they have never rolled a die before, the game isn’t rocket science, it can be taught fairly easily.  Hey you, you reading this, if you are interested let me know.

It feels weird being mostly bald.  Well, technically I guess I am completely bald, but I have little scraggly gray hair all across my head, so I am mostly bald.  Dr A said it would be 6 months before hair started growing back… but he never said 6 months from when.  From the last chemo, meaning January, from the transplant itself meaning September.  I guess I will have to ask him.

I guess I have agreed to the last chemo.  I don’t want it, and really don’t think I need it.  But Teresa is 100% on board now.  My mom will be 100% on board.  Dr A is obviously 100% on board.  Everyone else is 100% on board.  I guess I don’t have much choice in the matter.  1 more round of chemo and then I am DONE with chemo, done with cancer.

Mom arrives Saturday for a few days.  It’s going to be so nice to see her.   I miss her so much.  I wish they could have survived Des Moines and never moved, but the Region is her home and that is truly where she belongs.  My brother too.

With last chemo probably in August, I won’t be making Thanksgivingfest in November after all.  I won’t have gotten the first round of baby shots in time.  Simple as that.  No baby shots, no parties for Hectic.  Once again I will miss Thanksgivingfest and all that goes with it.  Such is life.

I hate the internet here.  It’s way too flaky to do anything serious on.  I’m lucky that I get to post this blog when I get it written.  Teresa went down to complain and management said not a single other person has complained.  Either we don’t have computer users staying here or no one cares enough to complain…  I am thinking no one cares.   It’s a shame though, this would be such a great place to stay with a couple fixed things.  Now it’s just a nice place to stay (instead of great).

well, have to start getting ready to go.  my phone just went off to remind me of the 3:30 appointment which I really do have.  I hope its with the nice pharmacist.  But with my luck it won’t be.  Oh well, Have a nice day folks.   And remember that guy who looks like death warmed over might just be me.

DAY #55

Teresa says I look like a cancer patient.  Here I was thinking I was looking somewhat better.  It’s the bald head and pale skin.  I guess since I am a cancer patient (especially one with a nasty cold) I can look like a cancer patient.  Supposed to start growing the hair back in October.  Might just happen to have hair for Thanksgivingfest.

Yes, it looks like I will be able to go to Thanksgivingfest this year after all.  I should get my first round of baby shots in October if everything goes according to schedule.   That’ll mean I should be free to go to Thanknsgivingfest at the end of November.  And then fly back before Thanksgiving to have the holiday with Teresa.  She isn’t gonna be able to go and I don’t want her to be alone for Thanksgiving.  So I won’t be spending Thanksgiving with my mom and brother and Jackson clan.  Just how things are going to work out.

Of course I will have to be careful around my friends at Thanksgivingfest, I will still be touchy to the common cold and such (grr).   And inevitably someone shows up with a cold, maybe Cori/Bruce will put it in the announcement that I can’t be exposed to common colds.  Only cuz they can literally kill me.

Maybe I shouldn’t go to Thanksgivingfest.  I would hate to ruin the fun for one of my friends who happens to have the sniffles.  But then again, Cori/Bruce are hosting and their house is large.  I can hide if I have to.  I will have to think about this.  I want to go but not at the cost of a friend not being able to go.

This cold is still kicking my butt, as we enter week 2 of having it.  It’s only supposed to last 3 weeks.  3 LONG weeks.  The cough, I think, is getting better.  But the wheeze in my left lung is still going strong.  The cough is still going strong, just better than where it was a  week ago.  PLUS, I finally got codeine cough syrup.   Which after an hour last night, shut the cough down for a few hours of blissful sleep.

Poor Teresa, she has this cold too.  I gave it to her.  Hers seems to have settled in her sinuses.  But every cold that Teresa gets settles in her sinuses, whereas mine always settle in my lungs.  But anyhow, she can’t get good sleep with me around coughing cuz she cant put in headphones cuz she has to be able to hear me if I fall or call out.  Sucks for her.  Wish there was something I could do to help her get some sleep.

45 days maximum until I am out of here.  Assuming no more Graph vs Host Crap goes on between now and then.   And assuming I can shake this stupid cold.  Gotta get off the Prednisone too according to Dr Alkateeb. But seriously, it looks like August 25th I am a free man.   Still wont have hair, still will be pale, still will look like a cancer patient.  But hopefully will feel a ton better and the thought of freedom makes me happy.

Hoping I look human again by November no matter what I decide to do for Thanksgiving & fest.

Tonight we are having Pasquale’s Pizza, well Stromboli.   Teresa discovered this place on our first visit here.  New York style pizza and such.  It has grown to be one of our favorite restaurants here in Rochester.  Pasquales and China 1 are our two go to places.   China 1 obviously being a Chinese restaurant.  Their sweet and sour chicken is phenomenal.  If these two restaurants aren’t rated #1 and #2 in Rochester, we are obviously missing something, because these 2 are great.

It’s 4:30pm, I am wishing it was 9:30pm so I could start thinking of going to bed.  This cold sucks.  But I guess it could be pneumonia again like the one that sent me to ICU while I was getting chemo.  That truly sucked.

Anyhow, I have announced officially to my D&D players that I will be starting my new campaign in mid-September.  Got 2 confirmed players so far.  Got plenty of time to find more.  I only want 5 players this time.  Not 6.  So it should be easier to fill the spots.  We don’t have a day or time yet.  Since I am basically free every night but Thursday, it’s all good to me.  Probably end up on Tuesday night again, but I am not confirming anything at all at this point.  Well, I am confirming that I will be running a  game starting mid-September and a few people are jazzed at the concept already.   Coolness.

Well, since I have been sitting here for over an hour writing this blog entry, I think I will go now.   Let me find some music.  You all know I like posting music.  so brb

Day +53 I think

I think it’s day 53.  Was supposed to see the doc today, but instead got one of his RNP’s, Mary, whom I really like.   I tried real hard to not give her the rhinovirus.  Kept my mask on, covered my coughs, etc…  My blood pressure is really high again, she is putting me on an OLD blood pressure med (I forget what it’s called) but it has worked before for me a long time ago.  She also gave me cough medicine with the step down from codeine.  Anything is better than robotussin.  She also gave me the promise is this cough medicine didn’t work she would write the prescription herself for codeine cough syrup.  Yup, a doctor type person actually gave their word about codeine cough syrup.  The world can end if she comes thru with it in a few days.

This cold is kicking my butt.  I don’t feel much better than I did when it started.   I guess I lied to Mary and the nurse.  I told them I was feeling better.   Will feel better when the cough is under control.  2 weeks to go on it if nature holds true.  It’ll be nice to have an immune system again.  It’s coming, just a few months of German engineering to go.

Somehow we figured escape day to be August 25th, which will be a nice belated birthday present from Dr. Alkateeb.  According to him it might be a bit before that (won’t argue with that) but another round of chemo is in my future, but Dr A said that can happen in Des Moines.  Woot, Home.

Speaking of home, the thing I miss most is the bathroom.  Here the toilet is HUGE, my feet dangle and the shower has like zero pressure.   Those two things will turn me off from staying in the north house again.  Supposedly the south building has it better.  So off to the south we will go when the opportunity to stay at the Gift of Life again.  Which will happen.

Well, dinner is on the way and I have nothing else really to say.  So, off I will go.  You all have a nice evening or whatever time zone you read this from.

it was the song on alexa, had to share.

Things, they are a happenin’

Day +51, made it more than half way.   We are waiting now for all signs of acute Graph vs Host Disease to pass thru, then I get one more “bump” of chemo (possibly even at home).  Then I am free from here for all intents and purposes.   This day I am looking forward to.  Should hit some time around day +100.  Coincidence?  I think not, they got this down to a science.  Imagine that.

I’m happy my mom is coming to visit in a week.  This gives Teresa a chance to run home and take care of some medical business that they wouldn’t take care over the phone.  My mom will be taking over as main care giver for 1 day (maybe 2) while Teresa rushes to Des Moines/Adel and then comes back to Rochester.  It’s all good, mom gets to visit, Teresa gets to see her doc, I’m happy.

Teresa just took out my stitches from my skin biopsy.   Another 2+ year scar to add to the collection.  WOOT.  This one is on my fore arm.   The good news is that I do not have Skin GVHD.  Just happened to get an acute case of it on the pass thru.   It’s going away pretty quickly.

Did the sleep study last night.  Actually slept thru the night almost.  Slept a hell of a lot better than I do normally with the super cpap machine.  Gonna get me one of those.  The super cpap works different than the regular cpap, I can’t explain it, google complex sleep apnea if you are really interested.  All  I know prior to this experience cpap’s choked me when I tried to sleep, a real battle that resulted in me ripping the cpap off my face.

Anyhow, I left my mask at the sleep study place.  So  I am using a temporary one until Monday when I can pick up my permanentish one.   I feel kinda stupid leaving my one behind, it fell on the floor and I just forgot to pick it up.

The plan for the remainding 49 days include a visit to see DR Jay Smith of the physical medicine and rehabilitation department.  Why?  He and his cronies have developed a minimally invasive cure for plantar’s fasciitis.   And since I am here, and it’ll be free (already made all insurance deductibles) I figured I’ll give it a go.  Assuming Dr. Alkateeb gives it the ok.  He is still the man in charge, but I can’t see what he would say no.  It’ll just lay me up for a week to 10 days.  No worries there.

I realized something, my friend Drew and his family probably can’t come to visit after the 1st, school starts.  If it is just Drew and his wife, then sure they can come but they have 2 children which they have to consider.  Well, if he can’t make it, it’s the thought the counts in my opinion.  No one else asked about coming to visit.  Although some unknown soul sent me Jelly Bellys.  Thank you to that unknown person, love me some Jelly Bellys. *That unknown person is gabriella from Roller Coaster chat, thank you very much.

Still have chemobrain, can’t get into any games or into writing my book.  My brain just won’t focus.  Heck, this blog entry has already taken an hour to write.  But at least I am writing something.  I also started on my D&D Campaign which will begin 2 weeks after I am free from this place (maybe 1 maybe 3).  I think I already have players lined up, I know at least 1 who is definite.

Anyhow, my new D&D campaign will be EPIC.  Like 60 uninterrupted days to prepare for it.  A redone evil.   Some new good.  A new world.  New Magic.  New Monsters.   Yeah, hopefully it’s gonna rock.    Get my group of players together (hopefully not an impossible task one night a week) and off we can go.

So beyond the buzz of being sub 50 days to go and beyond the buzz of mom coming to visit.  Don’t forget the buzz of new D&D starting after I break this burg.   The biggest buzz I haven’t shared here is that my donor cells took over 100% of my cell production capabilities.  Meaning, I am officially part German now.  That and the cool thing about it all is my blood type is going change from O+ to A+ over time.   Yup, my blood type is gonna be different like in the movies.  Way Cool.