Things seem to be going pretty good all thing considered

Well, the little baby Lexapro pills I am taking have helped considerably with my depression without making me go manic.  So cheers to Dr. Eastin and his knowledge of thing psychiatric.  I was heading towards doom and gloom and now I am in a pretty good mood again.  So I am happy about that.

Talked with mom about her house situation last night.  According to her, according to her lender dude, it’s all good.  There is supposedly nothing to stop it from closing on the 30th.  I don’t know jack about Indiana real estate law, it’s different than every other state.  So, if they can close by the 30th, more power to them, and great for mom.  So, I am gonna stop reading my brother’s panic Facebook post and always go directly to my mom to find out what is going on.  Should have been doing that all along.

I remember when I could walk an hour and not hurt or be winded.   Those days are way in the past.  Today I walked 20 minutes and it took me 40 minutes to recover.  I am officially pathetically out of shape.  But I am gonna work to fix this.  Right now its 20 minutes, as soon as I can I will move up to 30 then 40 and eventually get to walking an hour again.  As for the knees and pain, I got Tylenol and that should do the trick, along with wearing my knee braces.  I should be able to get back in some semblance of shape.  Just got to start out slowly.

Let’s spend a moment talking about weight. 202.8 today.  Trying to get back up to 205 or so.  I don’t want to be too light for Dr. Alkhateeb, he will lecture me.  And I don’t want or need a lecture on my weight.  By the way, before my transplant I was 234.  So I have lost a lot of weight and where physically I have no idea if its helping any, mentally I feel great about it.  I would have never thought of losing this much weight as possible.  I bet my donor is a lightweight guy.  Just a thought.

Speaking of my donor and Dr. Alkhateeb…  I wonder if Dr. Alkhateeb’s people have had any luck reaching out to my donor for more dli material.  It seems, according to the doc, that I am going to need these dlis for a long time and they can only come from one place, my donor.  And Dr. Alkhateeb said he’d get the people on it asap.  Would be nice to a status.  Perhaps I will message them and ask.  But I will tell you my biggest fear right now, my donor saying no or worse, my donor dying in some kind of accident.  But either of those is very slim chance.  So I try not to think about it.

Other than being horribly out of shape.  I feel pretty good, having gotten blood on Thursday.  Low hemoglobin sucks.  And the symptoms that come with it suck too.  Fatigue-permanent want to sit on your butt and do nothing.  Shortness-of-Breath-You know where you can’t seem to catch your breath for anything.  and Dizziness – the worst, when you aren’t sure up in up or which way is which.  Those are my 3 major symptoms.  Luckily my rate of hemoglobin drop has decreased.  So that should mean less blood for me.  The objective is no blood needed and no platelets needed either and my white blood cells stay strong.  I was there a year or so ago.   I want to go back to that.

I am so out of shape.

I did it, I got my blood that I needed so badly yesterday.  So, how did I celebrate?  By sleeping most of today.  From midnight to 9:30 from 11:30 to 3:30.  Teresa wouldn’t let me sleep from 5 on.  Now it’s just past 7pm and would still love to crash for another hour or so.  As it is I am gonna have to take extra meds to sleep tonight.  Oh well, not the first time I have had to take extra melatonin to get to sleep and certainly won’t be the last.  I’m just glad melatonin works so well on me that I don’t HAVE to rely on Ambien.

I chose not to play Dungeons and Dragons with the Gang tonight.  Too tired to think straight.  Dammit, I am coming up with lame excuses not to play.  I should be jumping at the chance to play.  But no, I come up with the too tired to think straight excuse.  My friends should dump me, I am too lame for words.

I discovered today that I am totally out of shape.  A flight of stairs down and then up wiped me out for 20 minutes.  Unloading the dishwasher wiped me out for 15.  Hard time breathing, and general wanting to lay down after doing each activity was the results of my little chores.  It sucks, I am gonna have to do something about this.

My brother and mother found out some bad news that may stop them from buying the house.  When you live with someone your credit has a tendency to merge.  Not just the good things, but the bad as well.  Well, this may cause ridiculous amounts of problems.  I hope they can get it straightened out and mom can buy the house she wants.  And as it stands the loan company moved the closing and move in date to the 30th.    Problems problems problems.

Looks like Thanksgiving will  be back at Ruby’s.  Not a big deal.  Just really wanted to have it at my mom’s new place.

Thanksgivingfest is still up in the air.  I really do want to go at least for a little while.  But its a 3 hour drive from my mom’s, so that might rule it out.

well, I have nothing else really to talk about.  So off I go.

I get 2 desperately need bags of blood tomorrow

I get 2 bags of blood tomorrow.  The other alternative was one on Tuesday and one on Wednesday.  Because of Teresa’s work, we chose to wait till Thursday and get both bags.  Hindsight says I should have taken the Tuesday/Wednesday choice.  I have come very close to passing out multiple times.  So unbelievably dizzy,  Short of Breath,  And I am fatigued beyond recognition.  It’s brutal living like this,  Can’t walk out to check the mail, no breath no energy.  Was forced to do the stairs a couple times today, that I thought I was going to pass out on the heater repairman.  Luckily, I had places to sit to save me that embarrassment.  I made it upstairs to the couch and waited for him.  I will not pass out in front of a stranger.

Well, I guess I kind of let it slip there that the heater guy was here today.   Yay for the heater guy.  We have heat again.  I’m not freezing anymore.  SWEET.  It seems the drain for he Air Conditioner got plugged and it flooded the heater part.  Causing things to rust.  There things rusted so bad that they wouldn’t work anymore.  Luckily he had the parts on his van and got things running pretty quickly.  And much cheaper than I expected.  He also relit our fireplace for free.  So it was a good visit from the repair place.

I’m hoping that the blood I get tomorrow gives me enough energy and oomph to play Dungeons and Dragons online with my Gang friends on Friday night.  I really do miss playing,  And I do miss chatting it up with my Gang friends.  I miss playing with my other friends, but they are running campaigns and I can’t just pop in and out of the campaign like I can Friday nights game.  Already worked it out with Jet, the DM.  I will be added in somehow and Magic Jarred when I can’t play.  It’s cool having friends like that.

I apologize to the people who read my blog who were used to 1000 word blog entries and now I am lucky to hit 400 words.  I just don’t want to bore you with my boring, sickly life.  So, unless something drastic happens get used to the 300-400 word blog entries.  I promise to deliver more if anything interesting happens.

Dr. Wehbe to the rescue

Well, no blood for me tomorrow, gonna have to wait till Friday.  My hemoglobin was 7.9, apparently not low enough for MercyOne which has given me blood twice at 7.6.  I sent Dr. Wehbe an email asking him to clarify the number for me.  The way I feel right now, I could use 3 units of blood, but I know the most they give is 2 and I am cool with that.  Now I just have to wait while feeling like crap.

Teresa Red Boxed Spider Man Far From Home for me tonight.  It was a pretty good flick, except I knew Mysterio was the bad guy from first frame.  Comics as a kid for the win.  Anyhow, ignore previous knowledge and you had a good movie.  And I am glad that Happy and Aunt May hooked up (even if according to her it was a summer fling).

Heat is still out here, it’s still cold everywhere in our house except the bedroom cuz we have a super space heater.  The 1.50 garage sale heater.  lol.  20+ years old and still can chase you out of the room cuz it gets too hot.

Why do I love Dr. Wehbe?  I sent him a simple email asking about cut off and it’s turned into a transfusion tomorrow.   WOOT.   Don’t want to spend 5 hours there, but the alternative is feeling worse for longer than I have to.  So, off to the infusion center I shall go.

Now we have to figure out how to get me to Dr. Wehbe’s office earlier in the day.  While Teresa is supposed to be at work.  Teresa is gonna talk to her boss, I just dont think it’ll be a pleasant conversation.  I hope we can work something out.

I swear Teresa playing her leveling druid makes me want to go back to World of Warcraft.  But since I don’t want to start over.  I won’t be going back.  I left for a reason, I was bored.  Yup, I was bored out of skull and I dont think anything is gonna change.  So, I won’t be going back to WoW.

lost too much weight so gimme blood

Tomorrow we find out if I need blood.  Silly really, yes I need blood.  Tomorrow we find out by how much or if the 2nd DLI caused my hemoglobin to increase, which is not an impossibility.  My symptom list says I need blood though, so I will go with that.

OK, I haven’t spoken about my weight here in forever.   As some of you may remember I was shooting for 205.  Well, tonight I weighed in at 203.6.  Now I gotta figure out how to put on a couple pounds.  I really want to land in around 205 and 203.6 will get me in trouble at Mayo.

Speaking of Mayo, someone in the transplant department scheduling department obviously doesn’t  like me.   I had a full day scheduled for various things.  So instead of scheduling the over draft the day before late in the afternoon to give us a break she scheduled it for the day after at 7:45.  ICK ACK YUCK.  We got a while to straighten this out, but still common sense would say no one wants one appointment at 7:45am the day after they have a bone marrow biopsy and a tooth removal.

My family won’t get to move in on the 25th although they might get the keys.  Have to wait for the new linoleum and carpet to be installed.  So they are shooting for the 2nd week of November, I think.

Hopefully Thanksgiving will be at their new home..  Ruby’s house sits everyone but it feels too formal for me.  I prefer a relaxed atmosphere for my Thanksgiving munching.

This coming bone marrow biopsy is important.  If my chromosomes are fixed, it means no chemo.  If not, that means chemo starting soon.  I hope to make Thanksgivingfest and Thanksgiving BEFORE I start chemo.  Ultimately it is my choice.  But Dr. Alkhateeb sure doesn’t make anything feel like a choice.  EVER.  Well, I am gonna take a stand on this.  2 weeks of when I start chemo is nothing.  He will just have to cope.

Hopefully the heater repair guy can get out here tomorrow morning, otherwise we have to wait till Wednesday.  Teresa left them a message stating I have cancer and we wont be available after 3pm Monday until 8am Wednesday.  So let’s hope for Monday morning repair guy.

heater problems, not a lot to say, DLI#1,DLI#2

Our heater died yesterday, right in time for the temperature outside to get to freezing.  Luckily we have the portable heater which got it more than warm here in the bedroom.  Monday we will call the heater repair people and get them out here.  We are fairly sure it’s a pilot light issue again which is around a 10 minute fix and runs about 100 bucks.  It’s just gonna be getting them out here that is gonna be the issue, we can’t be the only ones with heather issues, plus we have to leave at 3:30 for my 4pm blood test which can just cause problems with scheduling.

Yes, I didn’t post a new blog yesterday.   I didn’t and still don’t have a lot to say.

Right now I am hoping DLI #2 did wonderful things for my hemoglobin.  DLI#1 seems to have fixed my platelets.  And my hemoglobin only dropped .4 instead of .8 last blood test.  Miracles can happen.  Why can’t one happen for me?  I can picture it in my head, hemoglobin and platelets climbing.  That would be EPIC.

Still haven’t played Dungeons and Dragons with my Gang friends (I don’t count my night of confusion).  Again on Friday night I didn’t feel up to it.  I don’t know if I am ever going to feel good enough on a Friday night to play.  Sucks, I really do want to play, but Fridays normally are my bad days.  I guess we’ll just play it by ear and hope for a good feeling Friday.

Waiting to hear if Dr. Alkhateeb’s team have heard from my German donor to see if he is willing to donate more.  There is no reason he should say no, except by personal choice.  But the waiting to find out will cause me undo anxiety and more depression.  I hate to wait.

Speaking of depression, Dr. Eastin put my on Lexapro 5mg.  The littlest dose possible.  This is in hopes to break my depressive cycle that I have been in for a couple months.   We shall see, I haven’t been on it long enough to know yet.

Teresa is solid for Thanksgiving but I haven’t brought up Thanksgivingfest yet.  So, as it stands right now, we will be at Thanksgiving at my Mom’s place.  Thanksgivingfest is still up in the air.  I’ll ask her this week, the worst she can do is say No.

more hemoglobin mumbo jumbo

My platelets are up to 77 and my hemoglobin was only down to 8.3.  The Hemoglobin thing was weird because I have been dropping .8 for quite a while and last Monday I was at 8.7.  That being only a .4 drop.  Weird weird weird.  Oh well, won’t look a gift horse in the mouth and be happy that I don’t have to go out in the cold weather tomorrow (high of 42).  But maybe, just maybe, that silly little DLI might actually have done something.  Now, we wait till we hear back from Germany about getting more DLI donations since they seem to be keeping me alive.

All in all though, I feel kind of crappy though.  Hemoglobin number is low enough for me to know it and feel it.  Which should mean that I will be determined to need blood on Monday and will get the blood on Tuesday.

For some reason I am receiving the Leukemia & Lymphoma Society Thursday chat reminders on Friday afternoons.  Makes it kind of hard to remember on Thursday nights.  I made it to chat with 20 minutes left tonight purely by having an oh crap moment.

I probably won’t be playing Dungeons and Dragons with my Gang friends tomorrow night.  I feel rotten enough now to know that tomorrow I will just feel more rotten.

Tomorrow I hope to remember to call my insurance company.  Today I just totally forgot till just now.  Really need to get this straightened out.

I havent watched AEW or NXT from Wednesday night yet.  Guess those are on my schedule for tomorrow too.

Having cancer for the 2nd time just sucks.  It sucks the life right out of you.   I am not fun to be around right now.   So I am cut this blog short too.   I hope all my readers are having a better life than I am right now.  PEACE