Headache day 8

My headache is worse today, so I went and saw Dr. Donohue (works with Chris).  I hadn’t seen her in a while and she was surprised that my health was failing at the rate it is.  Last we had spoke, I was doing great after my transplant and everything looked good.  Needless to say she wasn’t very happy to hear of me having to get blood and get DLIs.  Anyhow, we talked for  a while about my headache and it really stumped her.  The only thing we had to go on is that Teresa had remembered the last one was cured with broad spectrum antibiotics.  SO, she and I decide Levaquin.  I took my first days dose a few hours ago.  Head is blazingly pounding.  If it works, I don’t expect it to work is a couple hours.  She also made me promise if my headache wasn’t gone by Monday I would go to the ER and have them do a CT of my head.  If I was bleeding in the brain, all the symptoms fit, so Monday might very well be a trip to the ER.  All I know is that my head hurts.

I’m thankful that MercyOne Adel is open on Saturdays for a few hours.  And Chris and Dr. Donahue are both caring practioners… I have never had the pleasure of meeting Megan who works with them, but I sure she is great too.  It’s nice having quality medical care in a town the sized of Adel.

The thing I don’t understand is I told 2 hematologists about my headache and they blew it off.  It took me going to a small town doctor to get any suggestion of what to do.  Bah, big money doctors don’t care.  If you don’t fit in their little bubble, you are not worth listening to.  At least that is how I feel sometimes.

I was supposed to feel great after getting blood.  Supposed to turn me into a super dude.  But instead my head is pounding greatly.  I have energy, I just don’t want to move much.  This SUCKS he says on day 8 of super headache.

I talked with Jason, he isn’t upset that I am gonna miss session 1 of his take on Eberron.  Dungeons and Dragons will go on without me for a session.  I want to play, but my headache is immense, and there is no way I am putting my headset on and having many voices in my head.  Jason is a good friend, he told me not to worry about it.

This is gonna be a short blog post.  My head dost protest.  So, have fun to you people out in the world,  I’ll be hiding under a pillow.

I got 2 units of blood and a stupid headache

This morning at 7:35am we headed out to the MercyOne Hospital downtown.  Without traffic its normally a half hour drive, with traffic somehow Teresa made it with 5 minutes to spare before 8am.  At 7:58am I was signing in at the Infusion Center.  By 8:15am I was getting an IV.  Things started off wonky, my IV site bled, and I mean bled.  So, by 8:20am she had taken it all apart, cleaned everything and put it back together and ta da no blood.  Then she called the blood bank.  Now I used to be blood type O+ and the computer didn’t like us asking for A+.  So they needed another vial of blood.   No problem, blood taken, shipped off to the blood bank and we waited.  And waited.  Finally around 9am blood showed up.  Turns out that the hold up was because my blood is wishy washy A little O+ blood still floating around in my A+ blood.  So the blood bank shipped in O+ blood.  Now this confused the nurse, here I am saying A+ and she’s holding O+.  So she called the blood bank and they explained about my weird blood and that O+ is the universal donor, so we were good to go.

So, about 9am the first bag of blood went on without a hitch.  Two hours per bag.  At least there was stuff to watch on tv.  They have to do a blood pressure/temp at 5 minutes in, then every 15 for 45 minutes, and then at the end of the bag.  First bag no problem.  I started gathering my few things and was ready to go.  Then another nurse who was helping out goes, don’t you have another bag?  I’m all, I don’t know.  Turns out I did.

So, it took about an hour turn around for the second bag to be hung.  TV took a wicked turn to Soap Operas.  So I say pretty much in silence for 2 hours.  It’s all good.  Got 2 bags of some strangers blood running thru me, I feel pretty good now.

They instituted a new policy at the Infusion Center.  After you get an infusion, you have to wait an hour before you can leave… in case an issue rises.  I guess better safe then sorry.  So I sat for an hour extra.  Then Teresa came to my rescue and we came home.

6 hours total spent at the Infusion Center, I get to look forward to doing this again in a month or so.  But I could have brought a book or something to do.  So its my own fault that I was bored.  It’s all good, I got the blood and everything is fine except this stupid headache.

The headache that I assumed was caused by low hemoglobin wasn’t caused by low hemoglobin.  It’s still here and it still is hurting.  If I hadn’t taken a nap, I would have called Chris (the PA) and got an appointment with him.  Teresa says I have had headaches like this and had to get antibiotic to make them go away.  I honestly don’t remember.  But since I reported headaches to 2 hematologists and both weren’t interested, it’s time to go to Chris.  I will call first thing Monday morning to get an appointment hopefully Monday afternoon.

My headache is bad enough that I chose not to play in the Gang Friday Night Gaming Game.  I really wanted to, but I know my head is just going to hurt more with all the voices over Discord.  So, I bowed out of tonight’s game.

That leaves Jason’s Sunday game scheduled to start this Sunday.  It’ll be fun if my head doesn’t explode.  I can’t back out on him.  That would just be wrong.  So Sunday might be a painful experience, but you do what you can do for your friends.

I get blood tomorrow woot

Thank the gods for Dr. Wehbe being a reasonable man.  And thank the gods for Blaine (the blood lab guy) going in to champion my cause.   Tomorrow morning I get blood finally.  My hemoglobin was at 7.6 today but I am super symptomatic.  A 4 day headache, random fevers, paleness, confusion, fatigue, the list goes on.  Blaine came back about 5 minutes after he disappeared to talk to Wehbe.  Said have a set and Crystal would talk to us.  Crystal is one of Dr. Wehbe’s nurses.  We sat in the lobby for about 10 minutes and Crystal called us back.  She did the weight, pulse, temp thing (I was running a 99 temp again), and the pullsox.  She then took us into a room, asked a few questions about meds and generally how I am feeling.  She already had orders from Dr. Wehbe to get me blood, so she did a very minimalistic check me out and said hang on while I get you an appointment at the infusion center.  Boom, she comes back with 8am.  We can do that.  So, by about 10am tomorrow I should be feeling better all around.  Oh, Dr. Wehbe doesn’t normally transfuse above 7, he made an exception for me cuz I was that bad off.

I cancelled my Dungeons and Dragons campaign of Avaras.  I did not realize I was going to get so sick, so fast when I started the game.  Yeah, I knew I was dying, just didn’t think it through that I would be so sick on the way and that it would hit so blipping fast and so blipping hard.  So Avaras died a second death, it’s a shame really, I got a lot prepared for that campaign that no one is likely to ever get to see.  Same goes for Neven and probably both halvess of The Hole.

I’ll probably feel good enough to DM again for the Gang Friday Night Gaming Group.  But I’m not gonna do it, don’t want to get into a campaign and then get sick again.  So, Jet said she will run a game tomorrow night.  It’s all good, really it is.  I get to play.  That is all I really want to do.  I love DMing, but playing is where my heart truly lies.   I made a tempest cleric for her game.   Gonna blow crap up with lightning.  Yeah, buddy that is what I am gonna do.  And I’m gonna have fun doing it.

Then Sunday is the start of Jason’s Eberron campaign.  I had to write 3 short backstories for my changling.  Who he is.  Who he is living as.  And Who he does his thieving as.  I wrote really short stories because I wasn’t feeling well.  Tomorrow I will expand on those super short stories and make them better.   Jason will understand my delay in getting it done sooner.  He knows I am not a slacker by choice.  His timing on setting up his campaign could have been better (for me) but it’s all good.  I’ll get him the backstories.

I think it is time for a short nap.  Don’t want to take a normal nap cuz I want to sleep tonight.  So, after I find a video and post this to WordPress then copy it to Facebook then mail it to my mom, I am gonna take a snooze.

All medical what my immediate future holds

It has been a rough few days.  Latest development is a massive headache caused by low hemoglobin which is not affected by Tylenol nor my super headache shots.  It started last night around 7:30pm, thought it was a normal headache took a couple Tylenol.  The headache just got worse and worse, so around 8:30pm I ask Teresa to give me a shot, headache just got worse and worse, so I got on google and found out that sever headaches go along with low hemoglobin and the only cure is a blood transfusion, which I hopefully will get tomorrow or Friday morning.  I hope my hemoglobin is low enough for Dr. Wehbe, it will suck big time if it’s not.  I forget if Dr. Wehbe transfuses at 7 or 8.  7 will mean another week of hell and I don’t know if I can take that.

I know I haven’t mentioned my hemoglobin much, it had been hanging out around 11 and everything was good.  My platelets had been dropping drastically.  But they have now mellowed out in the low 40s, while my hemoglobin decided to take a dive down to 8.6.  Now all the crap that comes with low hemoglobin gets to some fatigue, confusion, HEADACHES.  And once I finally get a Blood Transfusion, I will get to look forward to them pretty much monthly.  I would say fun-fun but it’s not fun.  As a matter of fact, it sucks since I don’t have a port or a PICC that means IVs.  Hopefully tomorrow my hemoglobin is low enough.

Plateletwise, like I said, they have mellowed out in the low 40s and are just hanging out.  40 is still much lower than I want them to be.   I want them back up is the 200+ range, where it spent most of the last year.  But I’d be happy to see them around 150 which is the minimal normal range.  Not sure what caused them to stop falling, but not going to complain about them being stalled out around 40.

And as long as I am talking about my blood.  My White Blood Cells are doing fine right now.  The small DLI I got gave me a big boost of White Blood Cells and they seem to be holding on real well.

It’s possible the small DLI I got actually stopped the fall of the platelets too.  We just really have no idea if anything is working as intended.  And I am just confused when they try to explain things.  Thank the gods for Teresa, she keeps things straight in her head and is able to dumb them down for me.  And then I usually catch on.

Anyhow, I know I have another DLI coming up soon.  But Dr. Alkhateeb is having a run around with the insurance or something like that.  I think Dr. Alkhateeb just got caught up being out of the office and things didn’t get done.  Anyhow, we are waiting for the dates.  It will be our next trip to Mayo.  A 2 day thing because insurance makes you go one day 1 and be “Checked out” (I’m a mess) and then lets you get the DLI the next day.  Waste of 1 full day in my opinion.  But hey, it’s supposed to add more to my 5 to 11 months to live.  Can’t cure me I don’t think.  But might make that 11 a 17.  Which would be nice.

After the 2nd DLI (I don’t know how long after), I will be having yet another Bone Marrow Biopsy.  My poor hipbone looks like swiss cheese.  But they have to find out if 1. I start showing blasts (that would be really bad) 2. if my chromosomes have went back to normal. and 3.  If my PT53 mutation is mutated or gone.  And the only way to find these things out is another Bone Marrow Biopsy.  At least Mayo knocks me out for them.

Just say No to low hemoglobin

Well, yesterdays visit to Mayo was a waste of time except for getting Baby Shots #3.  Dr. Alkhateeb seemed kind of lost.  So when we finally left Mayo we didn’t have a return date and still don’t.  We do know that the next visit will be for a DLI, just have no clue when it’s going to happen.  In the mean time, I am supposed to go along with the weekly blood tests, and this week or next week, I will need blood.  Which means via IV at Mercy Hospital.  I would say fun-fun, but it’s really a couple hours of my life that I won’t get back.  Heh.  I guess it gives me more hours to live though, whatever, its boring.

There is no Avaras, my Dungeons and Dragons campaign tonight.  I feel like entirely too much crap to try to run it.  And I am not going to feel better until I get some blood into me. The body is not meant to run on such little hemoglobin.  I can hardly think straight, and my imagination is shot.  Since we are down to 4 players, we can’t play anyway.  It sucks, but I may have to cancel Avaras again.  The 4 players that I have want to play, but it is hard as Dungeon Master to be responsible for keeping up the player base.  When you trust someone who says “I’ll get you another player and I will update my character” and they don’t, well that just screws the game for everyone else, including me.

I can’t lift my left arm above around shoulder level right now.  Right arm is ok.  Left arm is gonna take some work to get moving right anyway.  Silly Baby Shot.  Just got 1 more set (3 shots) to go.  Then I am DONE with the Baby Shots.

Fatigue is still a major issue right now.  I’m sleeping fine through the night and then feel fatigued all day.  Being tired (but unable to nap) all the time is brutal.  Speaking of napping, I did manage to pull off a couple hour one this afternoon (woot), but that was more of a fluke than anything normal for me lately.  Lately its  been, “I’m gonna nap” get all the pillows in the proper place, get comfy, and lay there for an hour thinking about how nice it would be if I could fall asleep, it’s kind of pathetic if you ask me.

I think if I don’t get blood Thursday or Friday, Friday night I will be in no shape to run “The Hole” again.  I was bad last week and it’s only going to get worse before it gets better.  Cancer sucks.  I’m going to bail, they will understand.  It’ll give someone time to prepare something else.  Maybe Shannon is ready to run Call of Cthullu.  That would be fun.  Just need someone to stall for one maybe two weeks.  I’ll get some blood, I’ll be good after that for a brief while.  A week to three.  That would be all I would need.

WordPress commended me on being a blogger for 8 years with them today, Happy Anniversary to me.  Now, if know me, I have only had this blog for around 3 years, what you don’t know is I had another blog before this one.  Heh, it was a running blog for a brief while talking about my attempt to get involved in the SCA here in Iowa.  The blog died when I gave up on that idea.  But it was 8 years ago today.  Amazing how much my writing style has changed (matured) since 2011, its all good.

It was just another Mayo Monday

Teresa and I made the trip to Mayo today.  Started the morning off for me at 5:30am.  Teresa got up about 15 minutes later.  We were out the door around 6:14am.  We got home around 8 pm.  So, it was a 13 hour Mayo day.   I for one, am exhausted on top of my fatigue problem.

The actual day at Mayo started are 10:10am with blood draw, some of them really weird.  6 vials this morning.  Yucko, blecko.  I hate starting with labs first thing, but its always how it goes.

Then we met with Gabe our favorite Pharmacist.  He always gets the first run at asking the questions of whats going on.  So I got to complain about fatigue.  And complain about not being able to eat between 2pm and 7pm without getting nauseous.   Beyond that he went thru my med list with Teresa.

Then we had a 2 hour break.  BAH.

At 1:00pm we were called back first to visit with a very pregnant nurse Sarah.  They do random nurse rotations, we get Sarah about every 3 visits.  I didnt even notice she was pregnant before.  Either I am blind or she didnt start showing until recently.  But now she is very showing.   Her job is to ask all the nursey question.  So, I got to complain about the fatigue, and not the not being able to eat between 2pm and 7pm without getting nauseous.  And we talked about all sorts of other nurse to doctor type things.  And then a new doctor came in, Dr. Matin, she was very hard to understand.  Have no clue where she is from, but English was definitely a second language for her.  Dr. Matin asked doctor type questions, which are a lot like nurse type questions and we went over fatigue and eating yet again.  Oh nurse Sarah did me a solid by getting me a heated blanket cuz I was freezing.

Finally about 1:37 the big doc came in, Dr. Alkhateeb, himself.  He asked a bunch of questions that I had already answered.  And gave a big spiel about me not getting a blood transfusion because my hemoglobin was 8.6 and not below 8.  Personally with amount of fatigue I have and the time before we see him again, I would have went with the transfusion.  All this means is Dr. Wehbe and MOHA will catch me and give me blood probably next Thursday or Friday.  The big doc did however show concern that I may have some kind of infection so more blood and a nostril probe were ordered.  The nostril probe was done right away.

Then it was time for Baby Shots #3.  Only 1 shot in each arm.  And my arms hurt.  Nothing new there, just surprised there were so few shots.  Still feels a little weird getting baby shots, but hey gotta get em.

Then it was back to the lab to do the tests that Dr. Alkhateeb ordered when we saw him.  I forget what the particular test is called, but it requires them to take 2 big draws the fill 3 bottles each with 2 separate pokes of the arm.  Yep, 6 vials in the AM, and then 6 bottles full  in the pm.  Took about forever for them to take the blood in the afternoon but they got it done.

It was about 3:30 and we decided we were hungry.  So Teresa gave me a Zofran and 10 minutes or so later we ended up at Buffalo Wild Wings.  Zofran failed me, 2 bites and I was done in with nausea.  Teresa really enjoyed her meal though.  So it was a win.  (My sandwich was good later after we got home).

We got home around 8 o’clock.  I finally got to eat my lunch which had turned into dinner.  We watch an episode of the Worst Cook show.  And then I sat down to write this blog.

It was a long day.

mmm Italian Beef made by Teresa

Teresa just made THE BEST Italian Beef sandwich this side of Chicago.  Sorry Babykins, they do something in Chicago that makes them amazing.  Yours was incredible.  Amazing is slightly better than incredible but not so far as being significantly different.  Anyhow, we both loved it and have enough leftovers for a few days (read as week or two).  This was primarily a rump roast (yeah, boo for crappy cut of meat) and some spices cooked in the sous vide for somewhere near 12 hours and it turned into some of the best beef that I have had in Iowa.  She just added onions and peppers, some Au jus, sliced provolone cheese and the right hoagie roll, throw it all together and BOOM, excellent sandwich.  I am still the luckiest man alive.  Who gives a shit that I am dying, I am going to eat well going out.

Waiting to find out what is going on in my treatment before I call a funeral home to arrange my cremation and stuff.  I’ve decided on where to have it done, in Stuart at the Johnson Family Funeral Home & Cremation Services.  They are the closest place to Adel which does Cremations in house.  I don’t want a service, I don’t want visitors, I just want to be burned up and put in something my wife can put on a shelf.  Teresa is weird, she wants to keep my ashes.  Oh well, I’ll be dead, what do I care?  Maybe it’ll make it easier to haunt her.

Tomorrow, we go to Mayo.  We are leaving at 6:20am to get there by 10:20am when things start with a blood test.  After the blood test we have a 10:45am appointment with the pharmacist Gabe.  He’s a real nice guy, really seems to care.  Then our next appointment isn’t till 12:45pm with a nurse, then 1:15pm with Dr. Alkhateeb (Finally).  After that we are totally unsure of what is going to happen.  I am scheduled for baby shots #3 at 2pm, but the nurse we saw last time said that probably isn’t going to happen.  So we don’t know nothing.  According to Dr. Alkhateeb before, I am also due for DLI #2 this week.  I certainly don’t want both on consecutive days.  So, we shall see what is on the big Doc’s mind and go from there.  If nothing extra happens we will be home by 6pm.  That would be nice if you ask me.

As I said yesterday, my first attempt at Friday Night Gang Gaming sucked.  However, assuming I am not back at Mayo this Friday (which is a possibility) I have been blessed with a second chance.  Everyone knows my game sucked, but everyone is saying it was fun.  If it is within my power, I will run a better game this Friday.  And hopefully I won’t nod off during the game, that was when I called it last Friday, when I nodded off for a few seconds.  I fought the fatigue and the fatigue won.

I am hoping to have enough players to play on Tuesday night.  I am down 1 maybe 2.  1 I can work around, but 2 I would have to redo everything.  One of my players said he could get me someone, but he hasn’t.  He also hasn’t updated his character which makes me think he isn’t into this anymore.  So, one quit and one we don’t know for sure.  Makes it hard to plan a game.  So Tuesday night, Avaras, my Dungeons and Dragons campaign is on hold I think, until I can find 2 more reliable players.

Fatigue sucks, I am wiped out.  Not sleepy, tried to nap to no avail.  Just have zero energy.  Which sucks, cuz I got things I want to do that I just cant muster up the gumption to do.