All good here

Teresa is pretty much over her pneumonia.  She went from really needing to be hospitalized to barely coughing in 4 days, she was taking prednisone and 3 anti-biotics to do this.  It is amazing how fast she got better.  She was sleeping in the guest room for several days to keep me from getting sick and it worked.  Now, finally, she is back to where she belongs, sleeping next to me in our bed.

Dr. Wehbe decided I only need to be blood tested every other week.  However, Dr. Alkhateeb, my main doctor from Mayo, wants weekly blood tests.  So, I got to get Dr. Alkhateeb to talk to Dr. Wehbe and get this straightened out.  I really don’t think there is any reason for me to have weekly tests anymore, so I agree with Dr. Wehbe on this one.  So, going to write Dr. Alkhateeb a message and tell him what Dr. Wehbe decided to do and that I agree with him.  I’ll write that after I get done writing this blog entry.

My chronic cough seemingly is getting better,  Well, what I mean is I am not coughing as much or as hard.  This is a good thing in my opinion.  The weird thing is that nothing has been done to make this happen.  I am just living life like I have been for a long time now.  My cough just mellowed out.

Drooling however, seems to come and go.  I just want it to stop.

I know I mentioned this before, but somehow, we got out of driving up to Mayo until April 10th.  We didn’t go in February (and aren’t going in the next 11 days) and we aren’t going in March and not for 9 days of April.  Unfortunately they scheduled things starting early in the morning, so we have to drive up there the night before.  Which means either 70 bucks for the Gift of Life House or 80 bucks for a hotel….  I vote hotel, they have TVs in the room and mini-fridges.  LOL.

So, on April 10th I will have blood drawn early, then my 18th bone marrow biopsy (I am pretty sure that is accurate), then go thru the pharmacist, the nurse, and then the doctor,  Going to be a long, uncomfortable day.  Well, the early morning stuff won’t be bad, but the afternoon stuff is going to be darn right miserable, followed by the 4 hour drive home.   Gah.

But that is a long time from now.  Right now, I am going to just chill and play Skyrim and Civ 4 Warlords.  Yes, I am back to playing Warlords some.  I am getting tired of doing the same thing over and over again.  The quests in Skyrim don’t change, I mean occasionally I find a quest I haven’t done before, but these are few and far between.  So Skyrim, which I touted for a long time now, has lost some of its shine.  Civ 4 Warlords is different every time you play it.  And for once I would like to have the patience to WIN on Conquest.  Heh, I just get bored after a while.

That being said, I am playing one or the other from when I wake up at some godly hour to when I go to bed between 11 and 12 at night (naps happen).  It’s just I have nothing else that I want to do.  Well, I am thinking of getting back in to Dungeons and Dragons, but I am afraid to get involved in any ongoing game.  My health can turn to crap in an instance.  So, maybe I can get into a one shot or short term game.  I’ll have to contact my gaming friends and see what there is to see.

I have watched a little professional wrestling in the last few days.  Ring of Honor specifically.  I think this and the above means I am starting to get back into things I used to enjoy.  It might be a little premature to declare I am back to being me, but it might just be a good step that way.

Bad News but Great numbers

In the bad news department (I always prefer hearing the bad news first myself, so you are gonna get it that way too), Teresa has double pneumonia.  She is really sick.  Like “don’t even think about work” sick.   She got a sore throat last Friday and it tumbled into double pneumonia.  Her left lung being completely blocked and her right lung at least half way.   She is in a bad way and the meds (anti-biotics) aren’t helping.  She is going to end up being hospitalized.  This sucks for her.  I wish there was something I could do for her… now I know how helpless my mom felt when I was a kid.

In the good news department, my Hemoglobin is 10.2 and my platelets are 234.  Those numbers be going UP UP UP.  Yes, I dreaded this chemo, but my body seems to LOVE it, and I haven’t needed blood since I started this chemo.  Dacogen is the name of it.  Right now, I am getting it 3 days in a row, every 4 weeks.   My last run will be in March.  With a bone marrow biopsy planned for April 10th.  Anyhow, I am super excited and very happy with the above numbers but Dr. Wehbe had me send a message to Dr. Alkhateeb about increasing it to 5 days (the actual dose you are supposed to get) in hopes of increasing those numbers more.  I am all for that.  I don’t work, I just play games on my computer all day, every day, so going to 5 days doesn’t bother me at all.   But my true hope is with the biopsy on April 10th I don’t have to be on chemo anymore.  We shall see if the wrongs in my last biopsy are righted, and I can go on living my normalish life.

I drove for the first time since September on Monday.  It was a little weird.  But I think I drove very well.  Then I did it again Tuesday and Wednesday.  And today I had the pleasure of driving my wife to my appointment with Dr. Wehbe and then to Urgent Care for a follow up for her pneumonia.  I would say driving is like riding a bike, but I am not sure I can ride a bike anymore.  Heh.  It was nice being behind the wheel again, and being as I wouldn’t pass out due to lack of blood, it was safe too.  As long as Teresa is sick, I will be driving myself around for anything I need to do (which I can’t think of anything that I need to do).  Oh wait, someone is going to have to go grocery shopping soonish, we are running low on a lot of things.  Perhaps I will do that to help out.

My chronic cough is NOT as impressive as Teresa’s cough right now.   Teresa wins the nasty sounding cough award, hands down.  My cough is barely a tickle comparably.

In Skyrim : Special Edition news.

I have deleted several of the characters I have made since last I posted.  Including the new one I mentioned last time.  I still have a 51 level, a 50 level, a 44 level, and a 42 level either Khajiit or Orc.

I am now playing a Nord, she is wielding a Skyforge Steel Greatsword. She is kind of a one tick pony and is leveling really slow, but I am having fun, so it is all good.  Nords are the race of the people of Skyrim, so all the people who hated on my Orcs and Khajitts are loving her.  It’s funny.

I tried an Imperial and a Redguard and couldn’t get into either of them.   So, out of 11 races, I would play 3.  In order of preference, that would be Orc, Khajitt, and Nord.  I just can’t get into offensive spell casting.  And although Conjuration is fun, you can’t kill the big bad with a conjured monster and in order to get the cool monsters all of your points go into Conjuration and your personal combat skills SUCK.

Anyhow, my Nord is set to kill Alduin (the big bad dragon) either tonight or tomorrow.  I keep getting distracted with her.  Doing other quests off the main quest line.   But she is close to finishing that storyline.  She did the Companions, then she is doing the main storyline, then she is going to do Dawnguard, then Solsteim and Miraac.  It’s all good.   I am having fun.

No Mayo trip and none until April woot

We ended up not going to Mayo yesterday, neither of us was up for the drive.  The long, boring drive through Northern Iowa, it is just mind numbing sometimes.  But it was a good thing we didn’t go, cause there was fresh snow falling and driving would have just sucked.  Besides those things, I am under close doctor supervision by Dr. Wehbe.  I have to see him every month I am on chemo down here.  I am in good hands, so good that Dr. Alkhateeb agreed that I don’t have to see him until April 10th, no visit in February or March, WOOT.  On April 10th, I have a bone marrow biopsy scheduled as well as appointments to see the pharmacist, the nurse of the day, and the good doctor himself.

The chemo appears to be working better than either doctor expected.  My hemoglobin and my platelets are both going up instead of down.  My hemoglobin went from 9.0 to 9.9 in less than a week and my platelets went from 150 last week, to 243 this week.  When I saw those numbers I nearly fainted.  I was expecting to have to get blood or platelets this week, but it appears my body is making what its supposed to make and I am very happy about that.

Now if Dr. Eastin can just get my sleep back in order, I will be golden.  He just told me to try things we had already tried and if they didn’t work, he had other ideas.  I am tired all the time now from waking up so early (2:50 today, wide awake).  We tried 2 Restoril for a week, no help.  Now we are trying 2 Sonata, which makes me super tired during the day.  Anyhow, have no faith the Sonata is going to work either, so we will have to go with one of Dr. Eastin’s other ideas.  I hope to snap out of this cycle soon and go back to sleeping 8 to 10 hours a night with drugs.  It has been way too long already, I miss sleeping solidly..

Still drooling for no reason.  Drooling sucks.  Just saying.  I feel like a baby or an older senior citizen.  I literally soak a washcloth with drool every day.  It is very annoying.  Supposedly I drooled last year too (according to Teresa, I don’t remember this), but it went away after a while.  Well, I am ready for it to stop for this year.

Other than being tired and drooling, I am doing great.  I feel good again.  But I have lost most of my interest in Dungeons and Dragons AND Professional Wrestling.  This has made Teresa upset, because all I do is play on my laptop while laying in bed listening to the TV play 80s music. I have little to no desire to leave the house for any real reason except to go to the doctor or chemo, then its cool to stop for dinner while we are out.  I haven’t driven since September, partly because I had nowhere to go and then I stopped sleeping well.  Boy have I changed in the last few months.  I hope that I revert back to what I was before, I liked him better.

Skyrim : Special Edition news…

I hit level 50 for the first time with an Orc Sword and Boarder. She kicked butt.  I stopped playing her at level 50 because it got boring.  I did everything I could to make her more enjoyable,but it became work to level her, just stopped being fun.

So, my next character was a Khajiit (cat) Thief.  I played her differently than the orc and she is still interesting at level 51.  It is still a little worky to level her, but its fun running around picking pockets and opening locks.  Plus I have almost all the dragon priests to kill.  Things to do.  But after 51 levels I decided to take a bit of a break from her.

Which brings me to my Orc Greatsworder. She is level 15 now, about to go get her Agent of Dibella.  She is also doing both the Compaions and Dawnguard stuff to get the Dragon Shouts, it is ALL GOOD.

Oh, someone asked why I am playing female characters.  I am playing female characters because Agent of Dibella gives you a 10% bonus to damage vs. the opposite sex and there is so many more male bosses in the game.  Yep, I do it to make the game even easier.  LOL.

I have tried all the races of skyrim.  The only 2 I like are Khajitt and Orc.  So, those are what I am gonna play.

For the record, Teresa and I are still madly, hopelessly in love.

Medical and Skyrim

Hello again…

I hope everyone is having a good start to their Februarys.  Mine is going so-so.  I am still not sleeping thru the night.  My hemoglobin is going down slowly.  My platelets dropped a bunch.  But my white blood cells are rocking along.

We got an appointment on this coming Thursday with Dr. Wehbe’s nurse.  Not quite sure what it is for, we did not make the appointment, but we will go and see her to keep Dr. Wehbe happy.  Then we have some appointment at Dr. Wehbe’s office on Monday too.  Might be chemo, might be with a nurse, might be with Dr. Wehbe, himself.   We misplaced the print out of what appointment is when and they wouldn’t release the information over the phone to Teresa.  She just got the nurse appointment on Thursday and an unknown appointment on Monday.

Friday we go to Mayo.  They will do a blood test.  Then we see a pharmacist, a nurse, and then finally Dr. Alkhateeb.  Just a check up to make sure I am still doing good enough.  I am still unsure he should have told me that I am the only survivor who was his patient with MDS.  It’s a little unsettling to know that.  I take it to mean I am living on borrowed time.

Anyhow,  blood test on Thursday and then blood test on Friday.  My poor good vein.  Heh, it can handle it, it has handled it before. I will let you know if I need blood or platelets soon or later.  We are hoping for later.

Taking 2 Restoril and having no luck of sleeping thru the night.   That is what Dr. Eastin, my shrink suggested.  He had no new ideas.  We added a Flexeril tonight.  The first time I took a Flexeril I slept 36 hours.  Now they just make me tired and hopefully will let me sleep thru the night.   She is an Orc Sword and Boarder.  She was a lot of fun, but too much work to Level now.  So, I playing her.

Start a Kjahitt Dual Wielder Thief again.  She is stuck not getting the last Marljath final quests,  3 out of 4 cities are sel.

OK, the meds have HIT,  No video today, I am going to bed,

Good night.

Heh it is an update

Well, I am trying to write a blog entry every 4 or 5 days now.  I know that is way down from every other day or every day or multiple times a day, but my life went from busy to boring, and I don’t want to hit you guys with too my boring.  So, unless it’s something major, it will be every 4 or 5 days just so you guys know I am still alive.  BTW, if I do die, Teresa will post a blog post here to share the news.

That being said…  I am nowhere near dying yet.   On Monday I had a CBC and lo and behold my Hemoglobin went up a full point from the week before.  That means the chemo appears to be working for my Hemoglobin.  My platelets not so much.  They went from a high of 220 to 123, that was from 150 the week before.  So, my Hemoglobin is doing GREAT, but my platelets seemed to not get the memo to go up.

2 more moths of chemo and then I have another bone marrow biopsy.  Yes, this will be what I believe I counted to be number nineteen (but I could be off).  It’s all good.  Mayo knocks me out so I don’t feel the procedure and it’s only a dull ache for the ride home.  The biopsies never really HURT, just a little discomfort.  So, it’ll be interesting to get the results of this biopsy.  It determines if I am back in remission or stuck having chemo for the rest of my life.  Dr. Alkhateeb says he doesn’t know why I am still alive, and is guessing at what to do for me.  (No, he didn’t say either of those phrases, but that was the jist of what he said).

I see Dr. Wehbe every month that I have chemo.  I see Dr. Alkhateeb pretty much every month too.  Dr. Wehbe is technically the doctor who is prescribing the chemo, since I am getting the chemo here is Iowa and Dr. Alkhateeb can’t write a prescription for chemo out of state. it is all good though.   Alkhateeb has spoken to Wehbe.  Everyone is on the same page.

I am really close to being a statistical anomaly.  On April 1st, it will be my 5 year anniversary of the AML diagnoses.  The powers that be in the blood cancer field stop tracking survivors after 5 years cuz there are so few percentagewise.  So, screw the percentage, I am still alive and will be after the 5 year mark.

Oh, by the way, there might not be a Still Not Dead Yet party this August.  It all depends on if I am still on chemo.  Ya see, Dr. Alkhateeb said I might be on chemo for the rest of my life..  SUCKAGE.  This coming biopsy is all important in regards to that.  If the biopsy shows all the chromosomes fixed, then there will be a party, if they are still FUBAR, then there probably won’t.   So good thoughts and prayers are appreciated.

I’m still waking up between 2am and 4am not matter what time I go to bed.  My shrink was not really much help in this matter.  He just suggested trying what we have already tried.  But he did say he would prescribe more than the max dose if the situation doesn’t get fixed.  Hit me with the mega dose of Restoril and see if I can sleep.   Almost all my life I have had problems with insomnia, but that has always been trouble falling asleep.  This is weird insomnia (still insomnia no matter which end of sleep you don’t get), waking up early and it kind of sucks.

I am still drooling too.  No medical person has been able to tell me why or how to stop it.  The odd thing is, it is stealth drool, I don’t always feel it until it hits my neck and/or shirt.  I change shirts often cuz a wet collar feels gross.

We go back to Mayo next Friday,  Just for a check up.  Our scheduler actually listened this time and doesn’t have us needing to be there until 1pn and we are done by 4pm.  WOOT.  Finally they are getting the idea that we come from 4 hours away and don’t want to get up at 3 in the morning intentionally to get to Mayo,. for a blood tests. (we have done that before).  Then I get a month off from seeing Dr. Alkhateeb.  In 2 months is my bone marrow biopsy.

I am still playing Skyrim: Special Edition.  My latest character is an Orc who wields a sword and shield.  She is level 43 now, which makes her the highest level character I have played in either original Skyrim or Special Edition.  Her Speech is at 97, almost to Legendary (100), it is just taking a long while to get her to skill up now.  Her Pickpocket is at 90 I think.  Whereas her One handed skill is only in its 70s, and her Block skill (shield blocking) I think just hit 40.  Heh.  Anyhow, I am having oodles of fun with this character.  More fun than I have had with any other character that I can think of.

I think that is all, this blog entry is much longer than I expected it to be.   But I wanted to share most everything. So, you get a longer blog post than I have been doing.  Well, it is all good.

Tired but I am feeling pretty good

Hello again, faithful readers.  It is I writing another blog entry because I paid for this and don’t want it to turn to expensive fodder.   In other words, no matter how boring my life is, I will post every so often just because.

Anyhow, I am wishing the best to all of you.  I am hoping that this winter isn’t being too harsh to you and that you are making the best of things

I’m still not sleeping through the night.   Today I slept in til 4:30am.  Makes for a very tired day.  I know there are people who intentionally get up that early and function normally, I am NOT one of those people.  I see my shrink on the 28th of this month, hopefully he has some solution to my sleep problem.  We have tried Ambien, Restoril and Sonata and none of them have worked.  We are pretty much out of ideas, being as I have never had this kind of sleep problem, waking up too early.  My insomnia has always been not sleeping at all or having serious problems falling asleep.  Ambien, Restoril and Sonata all do a fine job of putting me to sleep.  Heck, taking nothing I can fall asleep.  J just really hope my shrink has an idea,

The drool continues.  No medical person that I have spoken to has any idea why I am drooling.  And it seems to be getting worse.  It just plain sucks.

I appear to be having no side effects from the chemo.  I go my allotted 3 days and then go about my boring existence.  Seriously, you’d think that SOMETHING would be happening, but nope no side effects.  The main effect is going strong, so we know it’s doing something. I hope the no side effect thing continues and I just waste 2+ hours for 3 days a month and then I can almost forget about it.

I haven’t drive since September, first it was the lack of hemoglobin that kept me from driving.  Now I have a good amount of hemoglobin but I am not sleeping right, so I am a danger to any other driver, so I don’t drive.  The funny thing is, I don’t miss driving at all, I can live without getting behind the wheel.  It just puts a strain on Teresa and for that I will drive as soon as this backwards-ass insomnia goes away, that is assuming the roads aren’t messed up from the weather, I won’t drive in weather.

Speaking of weather.  It is supposed to snow here today, AGAIN,  C’mon, we have had enough snowy days.  It is time for some nicer winter weather.  35degrees and sunny would be quite welcome.  That can happen, heck, 40 and sunny can happen in January in mid-Iowa  But no, we get 32-33 with snow,

Oh my, wave of tiredness just hit, I am late for 1st nap.  Sonata, which I am taking now, makes me tired 24/7.  But dang, it doesnt normally hit like this.  Then again 1st nap normally happens an hourish ago.  So I guess its mostly my fault and only partially Sonata’s fault that I am so tired all the sudden.

I’ll skip the Skyrim report this time.  I don’t think anyone is really interested in it in the first place.  So, I don’t feel bad not sharing this time.

Just gotta say it again Cancer Sucks

Well, I am beginning to suck at writing these blog posts on a regular basis cuz my life has turned boring with the return of my cancer and subsequent treatment.  I apologize to anyone who wants to hear from me on said regular basis, I am hoping that this 4 month course of chemo (2 months done) do the trick and I go back into remission so I can have a life again cuz this life sucks.

I finished the second round of chemo on Wednesday.  The only side effect of this chemo that I have experienced is slight nausea a couple times.  Dr. Alkhateeb called it a “Baby Bump” of chemo and I can see why.  It takes about an hour an 45 minutes to do the whole thing and I get the chemo only for 3 days out of every 4 weeks.  Not bad, not bad at all.  Only got more months to go and then another BONE MARROW BIOPSY to see if the problems have been fixed.

Really hate the drive to and from Mayo.   Yeah, Teresa does the driving, but still I am in the car.  3 hours and 50 minutes each way thru nothing.  Corn and soy bean fields are about all we see on the whole trip.  We only drive through one city (we drive by the rest) and that is Austin, Minnesota.  Nothing to write about there, just the speed limit drops for a while.  The rest of the trip is farmland.

I have MDS (Myelodysplastic syndrome) and I had a stem cell transplant from which I have Excessively Dry Skin (I had really dry skin before, just picture it drier for those of you who really know me) as my form of Graph vs Host Disease (or GvHD for short).  Why is it so hard for the nurses giving me chemo to grasp this?  I lotion before going to the place where I get the chemo (Dr. Wehbe’s office), my skin just dries out on the way.  Lotion lasts maybe a half hour and its a 20 minute drive to the clinic.  So by the time they get me checked in and called back, my arms are dry.  I have explained my GvHD to at least 6 of the nurses, you’d think they would talk and I wouldn’t have to keep explaining it.  Anyway,  my skin is dry, it will probably always be dry, I’m just tired of explaining it to people.

Teresa just got over the flu or something like the flu and luckily I didn’t get it.  She was sick for about a week until she started taking an antibiotic.  Very sick if I have to say it.  She actually missed work because of being sick,  I think work is where she picked up to illness in the first place, she thinks it came from Dr. Wehbe;s office, as sometimes sick people come to visit at the cancer clinic and don’t even think about it.  Either place is as likely as the other…  Just glad I didn’t get it too.

That being said I still have other issues going on.  My backwards insomnia, going to sleep just fine, waking up at ungodly hours.  We are now trying Sonata, we went thru Ambien and Restoril with no luck.  First night of Sonata I went to bed at 9pm (I was tired from not sleeping) and woke up at 2:30am.  Tonight will be try number 2,  I will force myself to stay up later and see if I can’t sleep for 6 or more hours in one stretch.  Sure would be nice to sleep thru the night again.

My cough is still going strong.  I cough virtually every morning and every evening.  It’s wet, it’s dry, it is sometimes productive, but mostly not.  It sucks.  It sucks very much,

My drooling problem seems to be getting better.  I can go the hour and 45 minutes without really drooling while I get chemo.  But if I am not actively trying not to drool, I find that I drool.  It is a consistent thing.  I have 3 doctors and a PA and a Pharmacist all stumped as to the cause.  It is annoying to say the least, but it could be worse, I am sure.

I have 2 character in Skyrim who have passed level 40.  Level 41 and level 44.  They are both Khajiit.  One if a pure dual hand fighter and the other is an actual thief.  I am sure the thief has the 50 pickpockets for the achievement, now just looking for locks to pick.  Finding 50 people with pockets was easy, finding 50 locks is a chore.

Still finding it difficult to play an Orc past level 25 or so.  They tend to get BORING fast once they hit level 20.   And I have had no luck with the other races either.  For one reason or the other, I haven’t been able to get into playing any other races..  However, I still have Redguard and Imperial to try.  So I haven’t given up on finding a third race I enjoy.  I love Khajiit, I like Orc, it’d be nice to find a third.

That brings me to the end of this blog post.