Better shade of horrible

I feel a better shade of horrible.  3 days of feeling rotten is more than enough for any man.  I admit to being whiny, needy, crabby and a few other things.  But it could have been a lot worse and been lung GvHD which would have totally sucked.  Hopefully I feel better tomorrow, at least until I get my blood numbers which are, it seems, always depressing lately.


Yes, tomorrow we go to Mayo yet again.  I’m not quite sure what this visit is for, but we are going.  And thru fenagling the scheduler, we don’t have to be there till noon.  WOOT.  No 3am wake up call from Alexa.  We don’t have to leave till 8am and since we have hours between blood tests and seeing anyone, we dont have to be on time, so maybe we won’t leave until 9am.  Heh.  We have had a lot of visits we were unsure of why we were at Mayo for since this all started.  Last time, I asked, and was told “cuz we like to see you.”  OOOOKKKKKK But this visit is technically too soon to see if the DLI did anything to or for me.  All we do know is that it didn’t cause any acute GvHD, which we are happy about.  Maybe Dr. Alkhateeb was right and I won’t have any GvHD.  Would be nice to get cut a break.  So anyway, tomorrow I don’t know if I am seeing Dr. Alkhateeb or Dr. Shaw, either is fine with me.  According to his schedule, should be Dr. Alkhateeb. Cool.


Tonight we ae playing Aravas, my Dungeons and Dragons campaign that has had a little hiccup in getting going.  I have been in contact with all 6 of my players and they are all ready to roll.  Wish I felt better, but I will mutter through as best as I can for as long as I can.  Sitting up in the chair, I do not cough, go figure.  That is a good thing, no coughing means minor headache (I’ll pop a couple Tylenol).  Anyway, I am mostly set for this evenings session, I just have some npcs to name.  I know what the players are going to be doing, just don’t always know with or to whom.  I got a couple hours to fix that, or can name them on the fly.  Either way works out.


The guy I ordered the song lyrics on canvas from sent a sample, and the pic looked amazing.  I am so happy that Teresa found this, and I hope she loves it.  I am pretty sure she will.  I admit, I didnt go through every lyric to check spelling, but it looks good anyway.  Can’t wait to get it here and get it up above the bed.  Something for her to remember me by when I am gone.


Thursday morning is going to be rough.  I’m supposed to be at Dr. Wehbe’s office lab by 8am.  I haven’t driven with morning traffic in a long time.  It should be fun.  Normally it takes about 20 minutes to get there, I think I am going to give 40.  YAWN, 40 early morning minutes.


I did call my Dentist and got an appointment for next week Monday to get my permanent crown put in.  Hope nothing at Mayo tomorrow screw up getting to see my dentist on Monday, but you never know.


With the exception of Monday, I don’t believe I have anything else scheduled for next week during the day.  Too cool.  Oh wait, Thursday 2pm Blood Test at Dr. Wehbe’s lab.  Minor nuisance.  I have a light week next week as of now.  Will need it after this week and before the week after.  The week after includes baby shots and 2nd DLI.  But I’ll whine about that week when it comes around.


Only did one thing today. Heh

OK, I was wrong, Teresa is right.  I have a cold or the flu or some such.   I feel like hell, have a tremendous headache (that Teresa gave me a shot to make go away, I hope it works), and when I am not careful I have a wicked wet cough.  Yeah, on top of having my cancer back, I am sick.  Yay rah.  No more touching things (like elevator buttons) in public places anymore.  I am back to “You are really sick and catch everything” mode.  I would rather not leave the house, but I have to for some things I guess.  At least I am not to wearing a mask again… yet.


Teresa found the perfect gift for me to get her.   https://www.etsy.com/listing/507790768/song-lyrics-canvas-first-dance-lyrics?ref=pla_similar_listing_top-6&frs=1

The song we chose was Storybook Love from The princess Bride.  The song was sang at our wedding and has always meant so much to us.  It’s the perfect song.  It will be hung above our bed.  Something special for her to remember me by after I am gone.

She had shown me several other items over the last few days, and this one was the only one that struck me as perfect.  So, naturally I asked her about sizing and stuff, got out the tape measurer to make sure, ordered the perfect size.  I’m happy about it.  Hope I am still happy about it when it arrives.


I didn’t do anything I had planned to do today.  Didn’t call Jodie, didn’t call Dr. Matta, the dentist either.  I slept till 10 then napped from noon to two.  Hoping to get my days and nights back into order, cuz right now, I am tired at 10pm, go to bed, fall asleep around 3 or 4am and then sleep 6-8 hours.  Which puts me normally sleeping till noonish. Wednesday is going to be tough, we have to leave around 8am-9am to get there between noon and one.  I won’t say I can’t sleep in a car, cuz I have.  I just have difficulties sleeping in a car.  So I will be awake the whole time, just dragging my buttocks all afternoon.  We don’t get done with the Doctor till 4:30-5pm.  Then its the long traffic drive home.  It won’t be so bad once we hit Iowa.  But the Minnesota part will be packed.


At this point, I don’t know if I will be able to run Aravas, my Dungeons and Dragons campaign tomorrow night.  I am writing this at my desk and even with Zofran I feel like I am gonna puke.  I really want to continue my game, but if I can’t, I can’t.  I think everyone knows I have cancer, and I think everyone knows I am sick on top of that.  I think I will try to run the game and if I get feeling to bad, just call it then.  Would hate to call it now and then feel good tomorrow (no matter how unlikely that is).  So tomorrow we play for as long as I can do it or 3 hours, whichever comes first.


Teresa came up with the perfect dinner, except the restaurant is closed on Mondays.  Now she has dumped deciding mainly on me.  I know I don’t feel up to going out, so that leaves us with her going and getting whatever we choose to go.  Heh, she chose Lou Malanati’s Pepperoni Pizza from the basement freezer.  I shouldn’t have walked down the stairs, I felt like I was going to tip feet over head, good thing there is a rail.  Anyhow, the pizza is up stairs in the kitchen, the pizza pan is down from on high, and Teresa takes over from here.  So once the oven warms up, it’s 50 minutes to delicious deep dish Chicago style pepperoni pizza.  Yeah, buddy, that is how we role.


Doesn’t matter if its the flu or GvHD, I feel like crap

It started last night and has only gotten worse over today.  I feel like complete crap.  Teresa thinks I picked up the flu while I was out.  I think my cough and achy feeling is the start of GvHD maybe.  Either way I feel like total hell.  Yesterday was just a bad headache, almost bad enough for me to take one of my shots, but instead I toughed it out and went to bed early.  Today I woke with this cough.  And a headache.  The headache isn’t as bad as yesterdays but the cough is kind of nasty… I never cough of phlegm and here I am coughing up a ton of it.  It’s a different cough than I normally have that is why I think it might be GvHD.  Oh well, whats a cough and a headache gonna do?  Kill me?  Bah.


I’m tired, cranky and cold.  Teresa exiled me to the chair in the spare room.  The spare room happens to be the coldest room in the house (not counting the basement).  So here I sit under a big thick blanket trying to type this blog entry and not come across too cranky.  But I do have to say, sitting up in the chair here has made me almost completely stop coughing, so it’s not all bad.


I know all my players are excited to play on Tuesday night, but if I am not feeling better by then, I won’t be able to run the game.  I am sure they will understand, but it will be a big bummer to most of them.   But I can’t sit up at my desk because of my back and my cough and that is where I have to be to run the game.  I hope this cough goes away quickly if it is not GvHD.


I had planned to call Jodie the chiropractor tomorrow, but with this cough, I couldn’t lay there for her to do her job.  So, instead, I will go to see my dentist and get my permanent crown put in.  It is supposed to be ready tomorrow.  I forgot to call them last week and let them know my schedule though.  Bad me.  If they cant get me in tomorrow, it has to be Tuesday or wait till next week.   That is just how things go right now.


I think I see Dr. Alkhateeb on Wednesday.  IF he is out, it will be Dr. Shaw.  Teresa and I both liked Dr. Shaw, not that we don’t like Dr. Alkhateeb, just Shaw had more of a natural bedside manner, whereas you can tell Dr. Alkhateeb is forcing his.  I sometimes miss Dr. Alkhateeb’s jokes and take slight offense to them.  Then Teresa points out it was a joke, and I grumble something about them not being funny.  Oh well, whoever the doctor is, I assume I will get a lecture about something.  I always seem to get a lecture, usually about my dry skin.  Ho hum, boring stuff again and again.


Then Thursday I have to get up at some ungodly hour to get to Dr. Wehbe’s office by 8am.  Why did I agree to 8am?  Should have said 9 or so.  Heh.  Oh well, I will fight traffic in the morning and get there at 8.  Its not the end of the world.  Just me whining.


Priorities all screwed up

Feeling much better today so far.  No dizziness, no nothing.  Just existing on this plane of existence.  Being mellow cuz there is no reason not to be.  Teresa and I just had an argument where we were both arguing the same side.  Took us a good 20 minutes to realize that.  The only difference is our arguments is that I don’t want chemo again and I don’t think my MDS is going to turn into chemo-resistant AML.  She, on the other hand does think my MDS will turn into chemo-resistant AML and I will have to get more chemo.  So, I guess we weren’t arguing the same side, just from different angles.

Well, basically if it becomes chemo-resistant AML, I am screwed.  A body can only take so much chemo before the body literally starts to fall apart on the insides.  Any chemo strong enough to affect the AML would kill me itself.  So they would have to give me a bunch of baby bump chemo and those wouldn’t do jack.  But all this is irrelevant if I don’t start having Blasts.  Blasts would totally ruin my future.  So far, I have never shown blasts at Mayo, I do not want to break that record.  Blasts would mean I have AML instead of MDS and I would be dead in the matter of weeks instead of months or years.

But enough about that.


Aravas or Avaras, depending on my spelling of that day, my Dungeons and Dragons Campaign starts back up on Tuesday evening.  5 of my players have expressed desire for it to resume, the 6th I have to just assume he will be there.  Where the first session was mainly combat, the second session (this one) will be much more role playing.  I do not normally split sessions into combat/no combat like this, but right now it’s for story line purposes.  The combat last time served its purpose to start a story arc.  And the role play in the second session is actually going to start two more story arcs.  Which is all good.  Plus they get to meet the sleazy gnome.  What can go wrong with that?


I guess I am never (I hate the term never, but it’s pretty fitting here) going to DM for Mayhem Comics D&D night.  All the work I have done preparing the Hole for 3D people is for naught.  With my cancer being out of remission, I can’t commit to anything long term.  And they were looking for DMs who ran many month long campaigns.  I can’t even commit from week to week.  It sucks, I really wanted to do this.  One more big in person campaign before I die.  I guess it might still happen if the DLIs work.  Just not right now.


Dr. Alkhateeb said I might not get any GvHD from the DLIs, that is what I am hoping for.  Teresa wants my dry skin back to show something is happening.  I can live without the dry skin or any other GvHD for that matter.   I’ll take another Bone Marrow Biopsy over GvHD any day.  GvHD sucks, no matter what way it manifests itself.   Last time I had a bad rash of half my body, stomach issues, and then finally extremely dry skin.  All of which went away with time, but sucked while they were here.  So here’s hoping for no GvHD.


Priorities in my head are all screwed up, thus the order of topics in this blog.  I am mentally and emotionally a mess, I think it is insane that we are waiting for my numbers to drop before we do anything more.  Won’t be long until I am sitting in an infusion center either at Mayo or MercyOne getting blood and/or platelets to keep me alive for another week or two.  Man, I hope the DLIs work and work quickly.


Dizzy and not feeling well

I got dizzy the night of the DLI, called the station 94 at Mayo, they asked all the pertinent questions, then recommended going to the ER, which we didn’t.  Didn’t want to be accused of not drinking enough when I had and then being hooked up to more liquid.  Well, the same thing is happening tonight, getting dizzy when I have drank plenty of fluids.  Might be my blood pressure med working too good.  But it is definitely not quantity of liquids consumed.  Strange feeling getting dizzy when you are kicked back in bed.


I wrote a strongly worded email to Big Daddy’s BBQ complaining about the lack of baby back ribs and the pooooooooor service.  I don’t know why I expected a response, but I did/do.  There was no excuse for how bad things went and missing food.  I expect an I am sorry message from someone there.  I know I said I will never go back there in the email, but one upset customer can spread a lot of bad reputation and they ticked off my whole family.  The simple sorry would make things all good with me.


I slept till noon today, but I slept for crap last night.  And no, I haven’t napped today.  I got to get to a chiropractor and get my back cracked and in line like it’s supposed to be.  I have to sleep on my sides cuz of sleep apnea, and it really hurts my back to lay on my side.  Not good.  So Monday, I will call Jodie and see if she can get me in.  Jodie is the chiropractor who is about 2 blocks away from our house.  She is really nice and does a good job, I have used her once before when my back was bad and walked out a new man.


Jennifer from Mayo faxed the orders for the Cortisol check on Thursday to Dr. Wehbe’s office.  Cool deal.  After a Wednesday at Mayo, I have to be awake at 8 to go get this stupid blood test.  I think its totally unnecessary as I did not have an adrenalin problem when I went on the hydrocortisone, why would I have one when I came off?  I may be sleeping more than usual but when I am awake I am full of energy.  Bah, what do I care, it’s just another blood test.


I want to spend Thanksgiving with my family, but Teresa won’t be able to get time off.  And I won’t be in the shape to drive or even fly.  That also means I am going to miss Thanksgivingfest again too.  Boo to missing both.  I hate what my life has become again.


Funny, the difference between CBCs from MOHA (Dr. Wehbe’s office) and Mayo.  MOHA includes WBC White Blood Cells as their own category, easy to read.  Mayo breaks the White Blood Cells up into all the little types that they are, virtually impossible to read if you aren’t medically trained to read them.  I’ll let MOHA take my blood every week and not worry about trying to decipher Mayo’s gobbely gook.


Well, dinner is almost done.  Teresa’s sweet and sour chicken.  My personal favorite dish that she makes.  So, I am gonna cut this blog entry a little short.


Things to do, places to go, and all that

Today I slept till 11am.  Had to get up then to get ready to go see Dr. Wehbe.  It was nice seeing the short one again.  He confessed that he had forgotten that he was the one who put this appointment in the books.  Funny, it has been on the books for about 2 months.  Oh well, he was sorry to hear my MDS had returned.  Checked my blood numbers and was concerned but not to point of giving me blood or platelets.  That is still to come in the relatively near future.  For now we made the deal that if I need blood or platelets on the Mayo off weeks, he would write the orders for them, which is way cool of him.  In the greater scope of my cancer treatment, I like Dr. Wehbe better than Dr. Alkhateeb.  Dr. Wehbe is a genuinely nice guy and someone I am proud to call him my friend.


Other than that I took a nap from 3 to 5. So that makes about 14 hours of sleep in the past 24, I guess I am feeling a bit tired from the cancer.  But the truth of it all is I really like to sleep.  I like everything about being asleep, I don’t dream about having cancer very often.  I have great dreams most of the time.  And not having to live this cancer nightmare is a wonderful thing.  Dr. Alkhateeb would say I am sleeping entirely too much and its not good for recovery, but I would argue I am not recovering right now, we are waiting for the big crash again then we are gonna jump all over it.  Yeah, I will continue my sleeping habits and screw what anyone else that thinks I am doing wrong.


Mom has approved my proposed menu for Still Not Dead Yet party next summer.  Lasagna and Gas Station Chicken, Potato Salad, Coleslaw, Fruit Plate, and Vegetable Tray.  And she has said to leave it happening the 2nd week of August.  So, that’s pretty much been settled.  So, everyone set aside August 8th for Jeff’s Still Not Dead Party.  And it will be at my mom’s new house (hopefully).  Which will be cool.  Hopefully she will have as much room to sprawl out like we had at Jim’s house.  But I will just be happy to have the party.  Yup, it will happen as long as I live.


I messaged Jennifer from Mayo, she wants my Cortisol checked next week.  Cool deal, I just need to message her the fax number to fax the orders for the test to the lab.  The old order was no longer valid.  Shouldn’t be a problem, will remember to message her later tonight.


I am going to try to fenagle my way to Thanksgivingfest this year.  It literally might be for just that Saturday.  But hey, it’ll be all good to see even more of the Gang again, even though I saw most of them at my party.  It would be nice to see them again.  I miss my friends.


I’m sitting here now listening to YouTube’s Offspring mix.  Actually a decent mix so far.  Offspring, Rancid, Alien Ant Farm, Jimmy Eat World, all excellent bands.  But eventually all mixes on YouTube end up in the really weird or really bad.  But I have gotten close to an hour out of this mix, so I am happy.  I’ll be damned, I looked at all that is left in the mix, and I can say that with the exception of 1 song, I am cool with all in the mix.   About time someone made a decent mix all the way through.


Next Tuesday night, Aravas continues.  Yes, we had one game and then people (including me) couldn’t make it and I need everyone at the next session.  So, it kept being put off, now it’s time to resume.  I will not let a little thing like MDS ruin my fun.

Next Wednesday is another Mayo day.  But we don’t have to be there till like 1pm, so it’s only going to be a 12 hour day and not a 16 or more.

Next Thursday is the Cortisol test at 8am at Dr. Wehbe’s office.  When I made that appointment I forgot I am having a blood test on Wednesday but its not early enough for Cortisol, so I will keep said appointment.  It’ll be brutal getting up that early, but I will do it.


Another Lazy Day

Today has been a lazy day.  Teresa is working from home so she can “watch over” me after the DLI.  Which I appreciate greatly.  I slept till noon and then caught up on Facebook and had lunch.  See, I told ya its been a lazy day.


I have already started planning the Still Not Dead Party for next year.  I have the distinct feeling that I will be around for it, so I might as well start planning it.  I am thinking Lasagna and Gas Station Chicken as the main courses.  Then corn, potato salad, coleslaw, fruit plate, and vegetable tray.  I think that would go over well with the masses.  Teresa has volunteered to make the Lasagnas here, and then cook them off at mom’s.  That would work really well I think.

I am also thinking of moving the date up till the second or the  last Saturday in June.  Trying to avoid school times altogether.  And hopefully it won’t be too hot outside.  Jim has claimed the 3rd Saturday for his summer party.  So, I am thinking the weekend before his or after his party.  It’s already been cleared with my mom and brother, so it’s all good.  But I might just leave it the second Saturday of August.


I still need to message Jennifer at Mayo and inform her that I came off of hydrocortisone. It wasn’t intention, but none the less I came off of it a couple weeks before she wanted me to.  But Gabe (the pharmacist) was glad I came off it.  My cortisol level will have to be checked, of course, but since it wasn’t bad when I went on it, I assume it’s fine now.


So, right now, the leukocytes that were added via the DLI should be starting to work.  They have a tough job ahead of them, cuz my white cells already have momentum on taking back my bone marrow.  It’s weird sounding I know.  But my cells vs the donor cells, right now my cells are making a comeback and we don’t want that.  Thus adding more donor fighting cells to wipe mine out again.  Yeah, we are rooting for the donor cells to kick the crap out of my cells.

In all likelihood, I will be getting a 2nd DLI on Tuesday, September 10th.  Just have to see how I react to the first DLI.  But it’s so far so good.  Day 1, I am feeling great.  But if I am going to have GvHD from this, it’s supposed to happen in 1 to 2 weeks.  And in 2 weeks I am headed back to Mayo so Dr. Alkhateeb can take a look and see what there is to see.  it is possible that I won’t have any GvHD at all, we can hope.


Tomorrow I go see Dr. Wehbe again.  He scheduled me in without warning me.  LOL.  It’s all good, I like Dr. Shorty.  I have to get labs anyway.  So, this visit is to prepare Dr. Wehbe for my need for platelets and blood for a while.  The above mentioned fight between donor and my cells is gonna take a while, and meanwhile my numbers will continue to drop, thus the need for platelets and blood.  Anyhow, funny thing, Dr. Wehbe emailed me last night just to check in with me, he forgot he made the appointment with me.  So I am emailing him back and talking about the upcoming appointment and he is all what appointment?  LOL  So, Teresa and I go visit the short one tomorrow at 12:40.  And it will be good to see him again.


I feel good.  I’m in a good mood.  I’m not anxious.  I’m not scared.   This cancer stuff sucks, but hey, whatcha gonna do, let it ruin you life early.  Yeah, Dr. Alkhateeb put a death estimate on me.  What if I just have fun until Charon comes to take me across the River Styx.  Screw death estimate.  I want to live.