But I don’t want to go to Mayo

One of the last things I want to do this coming week is go to Mayo.  So, Tuesday we are going to Mayo. Not only are we going to Mayo, but we are staying the night and doing a lot more on Wednesday,  It’s not that Mayo is a bad place, it’s just far enough away to be a really crappy drive.  I can care less about the bone marrow biopsy, really if it shows any changes, I am betting they are gonna be bad changes.  I say this because my quality of life is crap. I am finally gonna get tooth #15 removed.  FINALLY.  No more food caught between my teeth, unbelievable.  I’ll also be allowed to be around babies as long as they have had their MMR vaccinations.  But overall, I still don’t want to go to Mayo this week.  But I will be going Tuesday at 11.  Yay rah BLEH.

Well, according to mom, that according to her loan office, there is on document they need faxed on Monday and the house will close on Friday the 8th. So, mom and Jim are moving to the Chesterton part of the Region.  They will start moving in after the tile is put in and the carpet is put in.  At least that is what I think I was told.  Now packing has become a priority.  Jim bought 20 orange/black totes to pack and carry in.  They got a lot of stuff though, I wonder if he got enough?  Oh well, it’s not that far from Jim’s house to mom’s house.  So they can make multiple trips if necessary. They are hiring professional movers to move the appliances and furniture.  I think that is a smart way to go.  I am so happy for mom that she finally gets a flat house.

I feel dreadful healthwise.  This cough is the single most annoying cough that I have ever had.  And it has finally gotten bad enough that I cough a little outside the house.  Not big elaborate coughs like I have in the bedroom, but little coughs that are very annoying,  Between the cough and the achiness I feel bad,  My knees thrashed,  My sinuses are thrashed.  My head ache keeps coming back.  Well, I have whined enough.  Just leave it as I feel pretty rotten for a guy living on blood transfusion which are supposed to make you feel better.

Teresa is making her potato, ham, and cheese thing again.  A delicious way to get me to put pounds back on.  She is such a good cook.  I would have shriveled away if it has been up to taking care of my own food needs.  I love that she loves to cook.  And I love her.

I started seriously playing Skyrim again.  Well, as serious as I get with a game.  I want to get the last 6 achievements that I don’t have.  The big one requires you to get to level 75.  The highest I have made it before is 54.  I can do it,  Just have to put some time in the game again.   It’s all good, it’s a fun game.

I got my blood on Halloween, now I am sick from something else.

I got my blood for Halloween, 2 bags of type A Positive.  Took a little over 5 hours to give it to me, cuz it took over an hour to get the first bag from the blood bank.  It was kind of funny there were 6 out of 12 patients getting blood on Halloween.   The nurses all made comments about how rare having so many blood patients.  Oh well, I got my blood and I am not going to die (yet).

Instead of feeling like crap from a lack of hemoglobin, I picked up some nasty infection while I was out of the house.  Wet nasty cough.  No fever yet.   General feelings of aches and pains everywhere.  Yep, I feel like crap.  Bad enough I let Teresa give me a breathing treatment.  Seems to have helped a little.  She gave me some pearl decongestant too, she’s all “You remember this” and I am “Nope” as I swallow it down.  I don’t remember most of the medicine I was on during my stay at Mayo.  I got sick, I got better, I got sick, I got better, I got sick again a year later.  At least I got that year.

So, the question of the moment is do I feel better after getting blood?  The answer is no, and this infection sucks.

Teresa has got her nerd flag flying right now.  She is watching a history of computers on Netflix.  It’s painful for me to watch.  I may be a nerd, but I am not this much of a nerd.

I started playing Skyrim again, wait I think I mentioned that.  I am taking it slow right now, when I feel up to it.  So, real slow. This tv show is really bugging me.  So I might just jump on Skyrim again here in a  few minutes or maybe CIV4 Warlords instead.   Bah, I just got to do something to get this tv show away from me.

Anyhow, this is going to be a really short blog entry.  I have nothing else to say.  So, I’ll go find a video and end this entry.

too little hemoglobin

Remind me to never let my hemoglobin to get this low again.  I feel atrocious.  New to fatigue, and the lot of symptoms, is dizziness and headache and confusion is back.  My hemoglobin is somewhere are 7.6 or 7.5.  I was 7.6 once before since this all began and I was a staggering mess.  If I hit 7.5 I will be at the lowest I have been since I was hospitalized last.  Can’t wait till tomorrow, should be getting blood.  My blood labs are at 9, giving them plenty of time to get me in by 11 so I can get 2 bags of blood.  Happy Halloween to me, I won’t quite feel like I am dying if they get the blood into me.  I hope I don’t have to wait till Friday, that will be no fun. And then I will be 7.4 most likely.

Mom’s house is going to close, just now not till November 7th.  So yay, she is gonna get the loan.  The company she went through deserves SUCKIEST MORTGAGE BROKERS IN THE REGION, and her loan officer BIGGEST IDIOT OF A LOAN OFFICER IN THE REGION.  These awards should be posted and published everywhere.  The company keeps asking for the same things over and over again and all the loan officer has done has said “everything is fine”.  Um, moron, if it was fine it would be closing today or the 23rd, the original closing day.  I am totally unimpressed.  But I am happy for my mom and brother.

Next Tuesday it begins.  Mayo in the afternoon and then ALL day Wednesday.  Tuesday I have my final baby shots.  Only one of which is supposed to hurt.  I can handle that.  We have to be at Mayo by 3:05pm, Finally a time we can easily shoot for.  Wednesday starts at 8:05 with blood labs, at least 1 abnormal lab has been added.  But its just blood, so who cares.  Then at 9 I have my bone marrow biopsy, the one that I expect to show no or little change.  The one I am going to dread getting the results in 5-7 days.  Then at 11, I have the pharmacist visit.  Then at 1 I have an unknown consultation.  Doesnt say what it’s for. Then at 2 I have a visit with the nurse and hopefully Dr. Alkhateeb, cuz I am supposed to see him at 2:30 and then be at the oral surgeons at 3 to have a tooth removed.  Wednesday is going to be a full day.  My first full day in a long time.   Thank the gods that Mayo provides wheelchairs and thank the gods that I have pain pills to take,  Without those 2 things I’d be screwed.  Really confused about the unknown consultation.  Wish they had given me a little idea of what its for.

I kept making dump mistakes in CIV4 Warlords.  I feel like an idiot.  Its only the easiest game to play (not to win). Anyhow, after so many mistakes, I decided to give Skyrim a shot.  Made bigger mistakes in Skyrim.   Maybe I am just not meant to play any games right now.  After blood I will try again.

I should be getting blood on Halloween

I went for my silly CBC today.  From the 8.5 hemoglobin I had last Friday, hemoglobin is down to 8.0.  Which technically with the symptoms I have I could have gotten blood tomorrow but I chose to wait till Thursday when there will be no question as to if I need blood or not.    My hemoglobin should be 7.5 and I should feel and look so horrible, it won’t matter that it’s Halloween.  Yes, I should be getting blood on Halloween, seems appropriate if you ask me.  I actually expect some of the nurses in the infusion lab to be dressed up, maybe not super costumed, but costumed to a certain extent.

Yesterday I posted a State of the Cancer address on Facebook because believe it or not, not everyone reads my blog or gets personalized phone calls or messages from me. So, I decided to write about it in quite detail on Facebook.  Got a bunch of likes and frowning faces, and some comments which were nice.   No one got goofy religious beyond “Your in our prayers” Which I appreciate being a Pagan Minister and all that.  I promise my readers here that nothing new was shared, everything they now know you already have been told a couple times at least.  My few loyal readers are my favorites anyway.

It’s the day before my mom’s new home is supposed to close and the bank is still asking for paperwork.  They haven’t told her yes or no yet.   I would have told them to go screw themselves already.  But mom appears to have the patience of a Saint.  And so, tomorrow she finds out one way or the other if she got the loan and then I will find out one way or the other if she got the loan.  So if she did I can correct my statements from the other day about where my STILL AIN’T DEAD party is going to be.  But for one more day, we wait.  Approximately twelve hours from now she should know if she is a new homeowner or not.  With all the bull crap they put her thru they should just give her the loan now anyway.

I haven’t played Dungeons and Dragons since the night I got all confused and screwed everything up.  To be honest, I haven’t felt up to it.  I haven’t really felt good long enough to play since my hemoglobin first dropped, and that was months ago.  Even after they give me blood, I still don’t feel up to it.  I wish I did.   I’ve had several opportunities to play, but I honestly feel horrible and I dont want to take that out on my friends.  It wouldn’t be fair to them.

The only game I have attempted to play is Civ4 Warlords.  Which is in my top 5 favorite games of all time.  I didnt like Civ4 until the Warlords expansion came out o so many years ago.  It’s one of the few OLD games that will run on Windows 10.

The only other game I am considering dusting off is Skyrim.  I bought it for 9.99 in a bargain bin and now I have like 2000+ hours playing it.  I will play in more when I feel a little better.  Oh yeah, its an 11 year old game which still runs on Windows 10.

Feeling rotten

I sent Dr. Alkhateeb’s team a note about my weight loss and another about my hypersomnia.   They are gonna check my cortisol level again and probably put me back on the pills that I hate.  Joy o Joy.  But those pills, hydro-cortisone really do help me eat and help me not sleep quite as much.  So, maybe the hassle of taking said pills is worth it.  Teresa is not looking forward to cutting up the pills again and they taste pretty bad.  I was on them from shortly after transplant till Christmastime the first time around.  Can’t stay on them forever because they are a steroid.  This time I am sure will be Halloween till mid-summer.  Yay Rah.  Not happy about this.

Feeling rotten is the correct term right now.  All the symptoms I have mentioned before are back for another visit.   Which means its almost blood time.  My hemoglobin was 8.something on Friday.  Will be low 8.something on Monday.  And 7.something on Thursday, which is why I made my appointment for 9am.  This gives them plenty of time to get me into the infusion center either on Thursday or Friday.  Either day will work for us, and showing up early should make Dr. Wehbe and staff happy.

You know I feel bad when I pass up a Halloween One-shot Dungeons and Dragons game hosted by Jason.  He asked me about a half hour ago, I had to say No, I couldn’t.  I can’t sit for that long.  I get fatigued really quick and have to bail.  That is not fun for me, the other players, or the Dungeon Master.  It’s the same reason I haven’t been playing on Friday nights.  And the same reason I won’t be playing any games in the near future.  It sucks, I know, it sucks for me too.  But until and if Dr. Alkhateeb gets my hemoglobin up in an acceptable range, I’m out of gaming.

Apparently Jim’s call the other day wasn’t completely accurate.  Seems there is still an outside (Very outside) chance that the loan will go thru.  Seems odd to me though, that they don’t know on the 27th if the loan is going to be approved on the 30th.  Anyhow, Jim posted a 4 day countdown on Facebook yesterday.  4 days until they know one way or the other.  I repeat myself from the other day, the loan officer they got referred to sucks.  And if they try this again in the Spring, I hope they go with someone else.

My great plan to walk has fallen to the wayside.  20 minutes is about all I can do and then it takes 20-30 minutes to recover from that.  My lungs revolt, my knees revolt, heck, my whole body revolts and I crawl back into bed having trouble catching my breath.  I had hoped to be up to 30 or 40 minutes by now, without the recovery time.  HA.  I was fooling myself.  I guess I am sicker than I thought.  Really in bad shape.  I am trying, but trying and getting nowhere is super frustrating.  I just want to be able to walk like a non-sick person, I don’t think that is too much to ask.

weighing in under 200 pounds Bah

I broke 200 on the scale today.  199.2 to be exact.  I wrote a note to Dr. Alkhateeb asking to be put in touch with a nutritionist so maybe I can put some weight back on naturally.  I am not happy losing all this weight.  Teresa isn’t happy I have lost all this weight.  Dr. Alkhateeb won’t be happy I have lost all this weight.  It’s not like I lost it all at once or rapidly until the last 8 or so pounds, they just up and disappeared.  So I think I did the responsible thing and asked for help from a qualified source.  It’s either that or go back on the med I hated, that just wouldn’t go away.  Don’t want that again, no thank you.

My brother called me this morning to tell me that mom is just gonna let the loan drop and not buy the house.  All the things that would be no problem now that they are 8 days from closing have become issues.  Stupid loan officer should have known these things would be problems.  Jim’s credit problems showing up on mom’s credit and a 2500 dollar cash deposit they won’t accept the truth about.  I blame the loan officer completely, I was only in the loan business for a couple months and I know better than him.  I am bummed for mom.

So, the I STILL AIN’T DEAD Party is still scheduled for August 8th, 2020.  Just its gonna be held in the same place as my AIN’T DEAD YET Party was in all likelihood.  In the Portage part of the region.  And also remember that Jim’s Summer Party is the 3rd week of June and everyone is invited to it as well.  Will have a different menu between the parties this time.  So if you come to Jim’s you can have BBQ and mine you can have Teresa’s Lasagna. And Teresa makes an incredible lasagna.

I didn’t walk today.  Today I have felt wiped out all day.  That is part of the reason my blog is so late tonight.  I wasn’t gonna write a blog entry today.  But then decided to write around 370 words.  I said what needed to be said and not much more.

I’m all messed up

I skipped my CBC on Monday thinking, I am good, don’t need one till Thursday only to find out the office I get my blood drawn is closed this Thursday for an unknown (at least to me) reason.  So I get my CBC and other tests on Friday.  And it’s no longer MOHA that I go to but Mission Cancer + Blood.  Yup, that is what they are changing their name to.  No longer a cure nickname, gotta say it all.   Mission Cancer + Blood.  Oh well, as long as Dr. Wehbe gets to write me scripts for blood they can call themselves whatever they want.  Just wish they would have come up with something with pronounceable initials.  MOHA stood for Medical Oncology and Hematology Associates.  See what I mean?

Dr. Wehbe also tried to sabotage me with the scheduler.  She was told not to schedule me before 3.  I can only get there before 3 if I am feeling sick, a deal made between Teresa, Teresa’s boss, me, and Dr. Wehbe.  Then I will be there at 9am with plenty of time to arrange things that need arranging {Blood infusions}.  Anyhow, I left the poor new scheduler with my 4 o’clock appointment and a message to Dr. Wehbe, “That I would see him early if I needed him early.”  He should understand.

The A Blood they are giving me isn’t acting the way O blood used to.  O Blood used to make me feel wonderful and alive again.  A Blood is making me droopy and tired.  I’m gonna try to talk to Dr. Wehbe on Friday about this.  It’s weird.  My blood type changed to A from O with the transplant.  When they gave me O Blood recently I felt great.  But since my blood type has calmed down into A, getting blood is keeping me alive but that is about it.

I think I need to go back on the hydro-cortisone as much as I hate the idea.   I am stuck right around 200 pounds and I don’t think I can eat anymore.  Today I had 17 pizza rolls and some candy.  And got up to a big whopping 201 pounds.  I do plan to eat again tonight, Mexican Pizza.  Still don’t think it’s gonna help much, but every calorie counts, or so every website tells ya.  I just am not getting hungry as much as I used to, I can eat about 2/3rds of what I was eating.  Guess what, if you cut what you are eating by 1/3 you will lose weight.

Drinking water has become a reissue again.  I am having problems drinking 4 bottles of water a day.  3 bottles no problem its the 4th I have to slam down right before bed.  Then I am up 10 times a night taking a leak cuz of my Benign Enlarged Prostate.  I am getting the 4 bottles down, but it’s being really difficult.  By #4 I feel like I am drowning sometimes or that I am totally waterlogged.  But I will keep forcing it, don’t want a lecture and an IV of water from Dr. Alkateeb.

Oh, I got up to 20 minutes walking.  Teresa said I looked horrible after I was done.  I could hardly breathe.  No wonder I looked horrible.   Took me about 20 minutes to recover and begin looking normal.  But I’m trying, tonight I will walk 20 minutes again. And hopefully I won’t be as winded or look that bad when I am done.

So whereas, normally I am feeling pretty good.  In reality I am not eating, drinking, or moving normal.  I really do hate the thought of going back on hydro-cortisone, but it would help with the eating and the drinking.  The only thing that would help the walking is a new pair of knees.  It’s the pain that is keeping me down right now.  I wear a knee brace on both knees, they help a little.  I’d go get steroid shots but Dr. Alkhateeb said no to those for now.  So, blah, I don’t want to do on thing that’ll help and I can’t do the other cuz the doc said no to what might help.  So goes my life.

Due to Mayo’s great scheduling, Teresa and I are not only missing Thanksgivingfest with the Gang, but we are also going to miss Thanksgiving with my family.  They have me scheduled for stuff Monday, Tuesday and Wednesday before Thanksgiving Thursday.  Talk about blowing Thanksgiving plans out of the water.  Oh well, Teresa and I will have a nice Thanksgiving just the two of us.  Memories of old times when it was just the two of us.

They are talking first real snow next Tuesday.  I hope not.