Dr. Shorty let me down

Dr. Wehbe or Dr. Shorty, whichever you know him by let me down hard today.  I miscalculated my hemoglobin and was off by 5 days.  I made no calls to arrange blood transfusions on Monday, I just said I wouldn’t need one today.  A casual conversation with the scheduler got the Monday thing going. I was wrong, my hemoglobin was 7.5 today, normally instant blood transfusion.  Dr. Wehbe said to send him (me) home,  I will be getting blood on Monday.  Not Friday or Saturday, but I have to wait until Monday.  By then my hemoglobin will be in the high 6s.  I’ll be lucky if I am able to walk.  I’ll be lucky if I an not too confused to get registered.  I’m gonna be in real bad shape.  And it’s all Dr. Wehbe’s fault.

We tried a new restaurant for lunch called The Other Place.  Teresa gives a raving review to tater tots, French fries, and chicken strips.  I say my salad was pretty good, always nice to find French dressing.  But their Lasagna was flavorless and worse the bottom layers were filled with mushrooms.  BLECK.  But I am willing to give it another chance.   They had several items including PIZZA on their menu that I would be willing to try.  Anyhow, it’s right next to Dr. Shorty’s office.  Good place for us to grab lunch/dinner after blood draws.

Got the results from the bone marrow biopsy.  The results are not pleasant.  The only abnormally good results is that my PT53 gene is not mutated.  The rest was basically all bad.  This means, more DLIs in hope of triggering the mutations to go back to normal.  Dr. Alkhateeb actually did call today.  He had hopes of me getting into a clinical study at Mayo, but turns out I am not bad off enough cuz my PT53 gene in not mutated.  So, DLIs and possibly chemo is what my future holds.  Starting the 1st or 2nd week of December.

Now, my mom and brother want to come visit the 2nd week of December.  Jim is choosing to work the rest of the month due to holiday pay and overtime… makes for a HUGE paycheck.  Anyhow, we’ll figure something out once the days of my DLI are concrete.

I won’t be playing in the Gang Dungeons and Dragons or whatever game their running this week.  No surprise there, I feel kinda awful and its just gonna get worse.

Sorry for the real short blog.  Some day I will have more to say again.

Clearing up some things

Firstly, any weight I have mentioned I have gained since Mayo, I have lost by now. 198.6 to be exact. And I am trying to eat “caloric” things and eat 5 or 6 meals a day (that is hard by the way, its hard to eat 5 or 6 meals a day, beyond never being hungry, there just isn’t really enough time in the day).  I’m eating leftover Halloween candy as a meal.  Nothing seems to be working.  I haven’t weighed this little since after my stomach surgery.  I don’t remember what I ate back 25 years ago.  All I know is, this is frustrating, put on a few pounds, get excited, change nothing, drop those pounds plus a few.

Secondly, when I write this blog, I normally am feeling good.  However, good is relative.  I haven’t felt really GOOD for a whole day since Septemberish.  So, when I say I feel good, please take into consideration that I have cancer, and good for me might be crappy for someone else.  And I am trying to make this a non-depressing blog.  So, I might very well exaggerate the good that I feel, because I don’t want to continually be depressing saying I feel like various stages of crap every day.

I’ve mentioned my chronic cough many times before.  I am going to see Chris (the PA) about it on Friday at 2:30.  It has gotten worse and we have ruled out just about everything as the cause.  Teresa thinks it might be the blood pressure med that I am on.  It has a 1% chance of causing chronic cough.  Seriously, it say one percent.  Anyhow, with my luck I am in that 1%.  So, gonna ask Chris for a different blood pressure med.  And maybe some codeine cough syrup.  Cuz when I get coughing, I get coughing, and I have to be driving my neighbors nuts.

Disney + is missing some movies, but has enough that it doesn’t matter much.  We only discovered they were missing because we wanted to see all the Marvel movies in order.  Found out Marvel made some screwy deals before selling out to Disney (thank you Google).  It’s ok, I didn’t really want to see Hulk again, the original kind of sucked.  But Disney also is missing a few Star Wars movies too.  Some deal with Netflix, so we have to wait till those deal expire before we can see all the Star Wars movies.  But as of now, I can still get my Jar Jar Binks.

We have gotten back half of the results of the bone marrow biopsy.  It shows I still have enlarged hemoglobin and small platelets.  They have fancy names, but I don’t remember them and they are unnecessary here.  My PT53 Gene is still not mutated.  So we got that going for me.   We are still waiting for the chromosomal studies.  These are the studies that have been messed up and have been causing all the problems.  These are the studies which look at my cancer.  Can’t expect much change from the last bone marrow biopsy cuz I am still getting blood every 15 days.

Disney+ Launched Today

Dinsey+ launched this morning to a big flop.  Can’t believe a company as big as Disney couldn’t get it right.  Must have had more customers than they expected.  But dang, if Disney can’t launch clean.  I doubt anyone can.  But now everything is working as expected or close enough.  Disney execs are probably doing flips of joy.  Cuz really, 4 hours to get it working is impressive.  And I know that tonight I will be watching Mandalorian with my wife, having a good time, and not caring how long it took Disney to actually launch.  Plus, they have Gargoyles, Teresa is very happy about that.

I forgot to tell you guys, that last Saturday night, I watched All Elite Wrestling: Full Gear, and I was very entertained from the start to the finish.  Still waiting to be surprised by something, but I’ll settle for enjoyment.  The final match of the night is the stand out match.  They are really going hardcore.  Mox vs. Omega.  They used a Barbed Wire King Sized bed frame to flop in the gods sake.  The ending itself was sick.  Mox had taken the padding off the ring, so it was just boards.  Omega went up did some kind of head first flip right on the boards, knocked himself silly, then a couple sick moves later Moxley got the pin.  No, this is not indicative of what AEW is all about.  It was just the match that stuck out in my mind.  The rest of the night was good normal wrestling.

We won, we dont have to make the trip up to Mayo this Friday.  Dr. Alkhateeb is going to call me instead.  WOOT.  The results of the bone marrow biopsy aren’t back yet anyway and may not be back by Friday.  Sometimes they are slow.  But not having to drive up for this visit is a blessing.  Small things can really make your week.

Teresa made cheesy chicken and peppers for dinner last night and it was phenomenal.  It’s been a while since she had made it, but she remembered a sauce issue from before and fixed it for this batch.  I tell ya, you all wish you had a Teresa to take care of you.  But she is mine, mine I say.   And she is not for sale or rent or borrow.  Beyond all of her cooking abilities,  I love her, I really do and the best part is she loves me too.

DLI#2 from back in October has had an effect.  Nothing major, just even dryer skin.  That an it skyrocketed my Platelets to 123.  Annoyed by the skin.  Happy about the platelets.  Wish something we did would increase my hemoglobin.  But I am glad I don’t have to get platelet infusions.

sorry. this is gonna be another short blog.

90 blog posts read in 24 hours

A friend who I believe to be Pete read this 85 of my posts the other day.  Making my total of posts read to be 90.  WordPress went apeshit about having so many posts read in 24 hours.  I think it’s funny looking at the stats for my blog now.   1 super-reader causing chaos.  Got to love it.  85 posts he went thru, not sure if its one sitting but in 1 day.  It’s funny.  I couldn’t do it, not even with my own posts which at least would have some interest to me.   But hey, I’ve been told my blog is interesting to other people too, maybe there is something to that.

Since being back from Mayo, I have lost 2 more pounds, but I am eating 5 or 6 small meals a day per instructions.  Confuses me when I follow orders and results aren’t what they are supposed to be.  I will admit my meals have be very small in general cuz eating has been difficult cuz I had that tooth removed.  Having to train myself to eat on the other side of my mouth which is also missing a tooth.  Oh well, I will keep eating and hopefully put a few more pounds on, just frustrating.

Doc said my fatigue is from my hemoglobin and my lack of eating.  Can’t do anything about my hemoglobin except get blood infusions every 14 days.  Same as I have been doing for a while now.  Can do something about my lack of eating.  Doc (not Alkhateeb, but at Mayo covering for him) says I should be eating around 2000 calories a day.  I can do that I think.  Just not everything I eat has calories on it.  I have no clue how many calories are in Teresa’s cheesy chicken and peppers or sweet and sour chicken.  I don’t know how to figure it out either.

I know I mentioned this the other day, but I am still excited for my mom and brother getting their new house.  I really didn’t think it was going to happen, with all  the crap the lender put them thru.  But it did go thru and now they have 2 houses.  But Jim can afford payments on both of them until they get the old house fixed up.   Just needs a little work and then they can sell it and be down to just one mortgage.  And only have to worry about 1 house and the house is in Chesterton.

Feeling sick mage me miss Shannon’s running on Call of Cthullu last Friday night.  I was really  looking forward to it too.  I haven’t played any game since September and here it is mid-November now.   This sucks.  The Eberron book comes on the 19th.   Will be just another Dungeons and Dragons book I have collected.  It’s not like I am playing anything now, so another book is just another book.  My mind just feels junky most of the time, confusion is a common companion.  Cant play if I cant think.

Found out the chronic cough might be caused by my blood pressure medicine.  So, Teresa sent a message via the portal to Mayo to Dr. Alkhateeb, asking for him to try a different blood pressure med or let me go to Chris (my PA) who is my primary care provider.  Either way, if this cough can be gotten rid of, I am all for trying something new.  This cough sucks and has been around for entirely too long.  COUGH COUGH COUGH every evening.  Makes for miserable evenings.  Evenings that start around 3 o’clock and end when I go to bed.  You try coughing that much and see how excited you are about possibly stopping coughing all together.

They finally got the keys to the house.

Well, my mom and brother got their keys to the house in Chesterton today, finally.  So, that means my STILL NOT DEAD YET party will be held in the Chesterton part of the Region this year.  That is assuming I am still alive on August 8th, 2020.  I don’t remember their address off the top of my head, but I guess I got plenty of time to get that information to you guys who are planning on making it to the STILL NOT DEAD YET party.  I hope more people come to the party this year.  It should be even more fun than last year.

I am recovering fairly well from Mayo.  The only part left hurting is my mouth where the tooth was removed.  They told me it would hurt for around 5 days, we are on day 3.  So, I got a little to go.  The stitches have dissolved though.  So it appears to be healing up.  The baby shots are a little tender but they don’t hurt.  And the bone marrow biopsy never really hurt.  Like I said before, I would happily take 20 bone marrow biopsies that feel like this one over 1 that hurts.

Teresa and I are trying to get out of our next trip to Mayo.  Firstly, the day they scheduled Teresa can’t do because of work.  Secondly, it’s just the results of the bone marrow biopsy, which I get thru the portal anyway.  Seems silly to drive 8 hours to just get something he could give me over the portal or by phone.  He has given me bad results over the phone before, so it should be a no brainer.  Besides we are scheduled to be at Mayo the week of Thanksgiving, so it’s not like we aren’t gonna be there soon enough.

I’m still upset that I am gonna have to miss Thanksgivingfest with the Gang and Thanksgiving with my family.  But I guess that my health is more important than having fun with loved ones.  Seriously though, I fought for different days at Mayo, but my Doc was having none of that, I guess these tests are that important.

I feel better than I have in quite a  while.  Still not great, but better.  I think the infection that was above my tooth that was removed was causing me to feel icky.   That and I think I was dealing with depression, which Dr. Eastin tried to fix with Lexapro, but I didn’t like the side effects.  But I don’t feel depressed any more.  Mood wise, I feel pretty good.

I went on a new force myself to eat diet.  Treating food like medicine.  I have put on 4 pounds in 3 days.  I only dropped about 10 pounds less than I wanted, so I guess I gotta watch this.  I really don’t want to have to go back to the dietician because then I was overweight again.

Mayo beat me up

Mayo was brutal to me.  The most physical pain I may have ever expected.  The funny part is that what hurts the most is where the baby shots are.  A place that people kept grabbing yesterday. I got fingertip bruises on my shoulder from people grabbing it After I told them how painful the baby shots are. Seriously, the shoulder I got the shots in hurts more than where they removed the tooth and way worse than the bone marrow biopsy spot/  Right now I can hardly move my right arm.  I took another pain pill.  We’ll see how well it works for me when the pain level isn’t quite as high.

Anyhow, should have known things were gonna be off when the Transplant House didn’t call on Tuesday.  We ended up calling them around 3 to find out they were full and they were gonna put us in a hotel.  The Kahler Grand ls a nice hotel… or will be when they get done with all the reconstruction.  The room we had was spacious and quiet.  Their bed was a rock though.  Very hard.  Difficult to sleep on. So, if the Transplant House is full again, I doubt we will stay in the Kahler Grand.  It’s a shame that such a nice hotel had so uncomfortable beds.

Waiting on the hotel took just about as long as getting the baby shots.   We were waiting for our room confirmation email.  It finally came when the nice baby shot nurse was just about to stick me.  Teresa tried to forward the email to her phone, but the wifi at Mayo just sort of sucks.  And in some of the buildings you can only get 3G.  Makes for a game we play trying to get wifi and then the wifi drops then you get it back until it drops again.  It’s a vicious cycle and can be very annoying especially when you are trying (and trying is the right word) to check your email or worse your Mayo schedule.

Baby shots didn’t hurt going in, but OMG did they start hurting about four hours later.  I have a whole new respect for babies getting shots.  Even if they do get the shots in their legs.   Still has to hurt like crazy.  But I am now done getting baby shots.  One this pain goes away I will not have to worry about ever getting a baby shot again.

The next morning started with blood tests.  Same old, same old, my cortisol level was 18 which means I don’t have to go back on the hydro-cortisol.  My platelets were 123.  WOOT, no problems for them to remove the tooth.  Everything looked good except my hemoglobin, which didn’t look bad but I Had gotten a blood transfusion less then then a week ago.

then I went and had my bone marrow biopsy.  2 things, I had it on the opposite side cuz of the baby shots.  And wow the bandage stayed on for 24+ hours.  And it barely hurts. I could go for more bone marrow biopsies if they all felt like this one.

Then we met the new pharmacist.  All they do is go over them med list and ask if anything has changed.

then we met with a dietician.  Who told me things I already knew, but reput them into my mind.  She told me to treat food like medicine and just eat.  And eat several small meals a day.  She also took me off water and wants me to drink more juice.  She was a real nice lady who really knew her stuff.

Lunch was had.

a very rushed nurse visit and a very very rushed fellow visit (Didnt see Dr. Alkhateeb) In order to be only a little late for my tooth extraction.

The tooth extraction went well, I think.  The whole thing would have totally freaked Teresa out.  4 shots, 15 drilling, and a bunch of cracking sounds.  But an hour after he started the Oral Surgeon announce he was done, then he drilled and such for another 15 minutes and announced he was done again.  lol.  I am so glad that tooth is gone.  No more food getting caught there, it was time for it to go.

Then we drove home in the snow.  Took us nearly 5 hours to make the 4 hour drive.  But we made it home, Teresa made me banana pudding.  All is well.

So, I am in a bit of pain.  But nothing I can’t handle.

Time changes suck

I hate the time changes.  Either direction it doesn’t matter.  The concept is outdated, hell, even the farmers who its supposedly for hate it now, just talk to an Iowa farmer.  Well, changing my sleep schedule even by an hour messes with my mental state.  Spring I tend to go a little manicy.  Fall I tend to get depressed, something I am already dealing with.  It is funny that it will take an act of congress to get rid of daylight savings time.  And my god, I hope congress has better things to do.  But on a slow day, it would be nice if some congressman or senator said, “Ya know, daylight savings is a relic of an older time, lets get rid of it.”  I think the whole nation would be united in saying thanks.  Cuz I don’t know anyone who like switching times.

Tomorrow we take another trip to Mayo, much to my desire not to go.  4 hours each direction, at least we get that over 2 days.  Tomorrow we don’t have to be there until 3:05pm, so we aren’t leaving till 11am.  At least I get to sleep in.  Teresa will be working from home until it’s time to go.  Then Wednesday is a 8am to 4pmish day, followed by a 4 hour drive home.  While in pain in my hip and mouth.  Fun not.

Mom was supposed to call me when she confirmed the closing Date of the 8th.  Either her house isn’t closing on the 8th or she got busy and forgot me.  I am voting and hoping that she just forgot me.  I want the nightmare that buying this house became to finally be over.  Never will I buy a house any way but cash in Indiana.  The realty part wasn’t bad, pretty standard, and she got lucky to find a house that ticked most of her boxes.  But the mortgage part was a mess from the get go.  Now, I have blamed the loan officer all along, throw the loan processor along in the incompetent file.  It was just ridiculous that they would ask for the exact same form 3 times.  Good thing mom’s bank has free faxing.  Anyhow, as of last night, mom was 99.999999% sure it was gonna close on the 8th.  I sure hope it’s 100% now.

Amazon mailed Teresa a small child Christmas catalog.  I have a business account with Amazon, so I miss out on stuff like that.  Anyhow, Teresa was wondering where Amazon got the idea we had small kids.   I buy Dungeons and Dragons stuff as my inner kid.   Teresa doesn’t even order that much in toys and games.  Oh well, I got to say, kids get access to much cooler toys than we did as kids.

Hey, it’s only supposed to be like 4 degrees cooler up in Rochester.  So, no parka necessary yet.  This is a good thing, I dread the full winter gear trips.  They are just uncomfortable.

Our main cable box took a dump yesterday.  Total refused to even take a hit from Mediacom.  So, now between 1 and 3 next Monday I get to babysit a cable technician as he swaps boxes.  Fun not.  We lost a lot of recordings with the box going kafooie.