Sorry I seem to have missed a day

Sorry, I have been trying to write every other day and yesterday I just totally forgot.  So, I am writing this one at 6+am.


I haven’t been sleeping well.  Anxious about starting chemo next week.  It is the very last thing on my list of things I want to do.  But right now it is the best option for keeping me alive, and that is the goal.  So, I will be full of anxiety and hate every minute of it, but I will do the chemo thing and be pleasant to the nurses.  Always be pleasant to your nurses, they don’t make decisions that aren’t in your best interest, and are just following doctor’s orders.  Besides being nice to your nurses usually get reciprocated.


I saw Dr. Wehbe yesterday.  Still short, still sporting the bow tie.  He assured me the chemo being used on me is nothing to worry about.  (Heh, I am bipolar with anxiety, I live to worry about stuff like this).  Hearing the words from Dr. Wehbe helped though.  I trust Dr. Wehbe, probably more than I should.  And I trust Dr. Alkhateeb too, and this chemo is all his idea.  So, between the two of them, I am in good hands.


One of the lab people yesterday started talking about God to me.  Saying it was God who is keeping me alive.  I told her, nicely, that I don’t believe in God and don’t think God has anything to do with the situation.   Cuz if there is a God, he is a sick sadistic God.  I gave up on him years ago.  But anyhow, if he is your thing, then go for it.   I wouldn’t try to convince you my non-belief.  God exists for you, good for you then.


I still don’t know how I am supposed to die.  I just know that most who come out of remission with my cancer don’t live 6 months and I am considerably past that.  I keep forgetting to ask either of my doctors the question.  Teresa says I have asked Dr. Alkhateeb and he said I would get blasts in my blood to the point where I couldn’t have any normal blood in my system.  But that doesn’t compute right in my head.  So, I want to ask (again?) to find out the answer.  I want to know what to look out for.


I keep restarting in Skyrim: Special Edition.  I keep forgetting to do things at certain levels and realize it levels later, get pissed at myself and delete the character and start over.  I will eventually get my act together and play a character past level 26.  I just can’t decide what type of character I want as my main.  I am gonna try a sword wielding caster, sword in one hand and spells in the other.  Just have to pick a race for her.  Orc Hammer wielders level too slow.  Kajitt level fast, but I am getting bored of the same thing over and over.  I’ll figure it out.  It’s all good.


I believe the last of the stuff at my brother’s old house is being moved to my mom’s new house today.  Then the great unpacking begins for them.  Sure they have unpacked some.  It is just that there is so much still packed that it is going to take them a while to get everything out.  I wish them the best in this endeavor.  Moving sucks.


Lemons

I really wish my mom and brother could have come to visit this week.  But with Teresa on the tail end of the flu, it would have been wrong to have them come.  I miss them, really I do.  Anyhow, I hear it worked out good for them, gave them a chance to finish packing the old house and move it to the new house, a process which would have probably lingered for quite a while without a week off to get it done.  One of those when life gives you lemons, if you don’t throw them at someone, you make lemonade.


Teresa is all but well now.  Her stomach is still a bit tender.  And the muscles used to puke still hurt.  She had to have picked up the bug at Mayo.  It’s the only place we had went with sick people in the last few days.  Mayo being a veritable petree dish of germs, which are easily passed to the unsuspecting masses.  Not to belittle what Teresa went thru, but I am really glad that I didn’t get it, cuz I don’t have the immune system to fight it and might never again have said immune system in this lifetime.


Pucky and Mojo went to the vet this morning for teeth cleaning.  I will say this, their teeth look great now.  Poor guys though, all drugged out.  It was a challenge to get them to eat breakfast.  Pucky somehow made it on to the foot of the bed before crashing; Teresa then wrapped him in a blanket and he is sound asleep.  Mojo is asleep in Teresa’s arms while she is working from home.  Both of them seem to be ok though.  They are just really tired and we are gonna do whatever it takes to make them comfortable while they recover.


I am really enjoying Skyrim: Special Edition.  I find more differences every time I play.  It’s almost like playing a different game to a certain extent.  And the creation club just adds more to the game.  Yes, it costs to buy stuff off the creation club, but I have really liked everything I have gotten with the exception of one really confusing dungeon;  I am going to have to watch a walkthrough of Forgotten Seasons on YouTube.  Someone is bound to have made one.  Beyond that, everything I have gotten has been cool.  My goblin pet who summons Air Elementals is just plain cool.


I really don’t know how much longer I am going to live.  I am hoping thru August.  I am hoping to not be on chemo for all that time.  I am hoping the after 4 months of chemo that my chromosome anomalies will be fixed.  (in 4 months I have another bone marrow biopsy to check that issue specifically).  If the chemo doesn’t work, and I survive still, Dr. Alkhateeb said I will probably get another transplant from a different donor.  That alone sounds like the best bet to me, the best chance of extending my life.


Appointment with Dr. Wehbe on Thursday afternoon.  Then chemo starts Monday and goes thru Wednesday.  Problem we discovered is that I will need blood during that chemo run.  I scheduled my chemo without even thinking about needing blood.  And the chemo will cause the blood getting to increase and add platelets.  Chemo kills the blood and platelet manufacturing parts, and you have to replace what isn’t being made.  I really don’t want chemo again, even this wimpy crap chemo is gonna cause me problems.  Not just with my blood, but other issues, the side effect list is impressive.


My family not coming to visit

Bro and mom can’t come right now.   Teresa has the flu.  Yes, she got the flu shot, but the flu shot is only so protective and not again certain types of the flu.  She was really sick though, puked (several times) for the second time since I have known her, running a 102+ temperature, the works.   We have been trying to avoid each other in the house because I can’t afford to get the flu that she has.  So anyhow, I had to call my mom and let her know that they shouldn’t come with Teresa being so sick.  I feel bad about this, mom and Jim were looking forward to coming to visit and we were looking forward to them being here.  Life suck sometimes.


I see Dr. Wehbe on Thursday at 3:20.  Then start the chemo on the following Monday.  I still don’t want chemo again, but have come to the point of this is the only option at this time, so acceptance.  The chemo is really a lite chemo, should mess me up blood stat wise.  Good bye platelets in the 100s.  But it shouldn’t make me lose my hair or anything too weird. It should also mess with my ability to think and do things, so I need a full time babysitter.  We are still trying to figure out how we are going to do this.  My mother and mother-in-law have both volunteered to help, which was nice of them.  Right now I don’t know what to tell them though.


My cough is persistent.  And no longer waits till 3pm to start.  I start coughing the minute I wake and cough most all day.  It’s annoying as all hell.  I am taking Advair and Duo-Neb religiously and they seem to help a little bit, but as soon as they wear off, cough cough cough.  My lungs are clear though.  Chris (the PA) said they are Bronchial Spasms.  Sometimes wet and sometime dry.  All the time a pita.


Been playing a lot of Skyrim: Special Edition.  Beyond the water looking better, there is all sorts of cool things that are different.  And the Skyrim Creation Club is cool.  They let people develop stuff to add to the game.  Quests, Weapons, Homes, all sorts of stuff. I had a character up to level 32 when I realized I made a horrible mistake around level 12 or 13.  So I deleted that character and started over.   Yeah, I do that a lot.  Screw up and start over.  Or get bored with a character and start over.  But the point is I am having fun with Skyrim again.


My new laptop that I ordered is being assembled.  Well, I assume probably not today, but in the general rule of time, its being assembled now.  After it is assembled it goes to Quality Control then Burn In.  IBuyPower, the place I buy my computers from does a great job of keeping a person informed of that status of their build.  It may very well be shipped by the 13th.  That would be cool, it’ll be here before Christmas.  Teresa has already laid claim to this laptop.  I’ll clean up the hard drives and gift it to her for Christmas along with her other gift.


Today I have a splitting headache.  No other symptoms to whine about.  I took a couple Tylenol and they seem to be working.   If they don’t continue to work, I will take an Imitrex shot.  Those almost always work.  I’ve been getting a lot of headaches lately.  Has to deal with my hemoglobin getting lower.  Not enough blood circulating in the head.  Luckily Tylenol seems to work for me for these headaches.


There can be only 1 and its apparently me

My doctor blew my mind today.  He told me of all his patients who have come out of remission (had a relapse) with my specific diagnosis I am the only to have survived this long.  Which means, by all rights, I should be dead by now.  I thank you all for your prayers and good thoughts.  I don’t much believe in God anymore, but prayers can’t hurt, and good thoughts are always appreciated.

I start chemo in 2 weeks, 3 days of chemo then 4 weeks, then 3 days of chemo then 4 weeks, on and on perhaps perpetually.  I go to Mayo every 4 weeks too, starting at week 3.  And I have a bone marrow biopsy scheduled after the 4th month of 3 day chemo treatments.   Luckily, I get to have my chemo here at Dr. Wehbe’s place.

I still don’t want chemo again, but I have read up on the chemo I am being given, it’s a light chemo.  I will not lose my hair.  I will not have mouth sores.  So, I am not nearly as opposed to it as I was.

Not sure why my donor backed out, it’s ok though.  If I need of bone marrow blast, he would most likely still be able to do it.  At least that is what we hope.

If worse comes to worse.  And I am still alive for this.  Dr. Alkhateeb said we can always do another stem cell transplant.  Chemo wouldn’t be as harsh as chemo was for the first time.  My body cant take another round of really harsh chemo.  Anyway, if I had another stem cell transplant, I would have 3 birthdays.  Mind boggling.  And my blood type could change again.  Heh.

I told Dr. Alkhateeb that I was gonna live and dammit that is what I plan to do.

And my Still Aint Dead Yet party on August 8th, 2020 should still be on.  Yeah, buddy

no DLI chemo for Christmas

Well, my donor was unable to get the Donation ready by this week.  Heh, he is a 20 year old guy, I’m sure he has better things to do than worry about me.  Anyhow, that means we won’t be staying till Friday at Mayo.  And I won’t be getting the DLI.  What will be happening is I will start a regiment of chemo (BOO) real soon.  I have already forgotten the name of the chemo he wants to use, but it’s a pretty weak chemo cuz my body cant take a strong chemo again.  Anyhow, he wants me to make an appointment with Dr. Wehbe for next week to get this chemo crap all set up.  In case you can’t tell, I am not happy with having to do chemo again.  What I don’t know is if this means I will never get another DLI.


Dr. Alkhateeb actually called me to let me know what was going on.  That means he has called me 3 times during the course of treatment.  3 phone calls in 2 years of him treating me.  At least he didn’t wait till we were there to tell us about the donor.  He called on Tuesday for the trip up there on Thursday.   That’s good I guess.


Dr. Alkhateeb was surprised when I told him I am getting 2 units of blood every 15 days.  Tells you how close he is paying attention.  Next blood will be the 17th of December.  It’s like clockwork.


Dr. Wehbe’s office called back, they are gonna get me in to see Dr. Wehbe of the 12th which is next Thursday..  If not sooner at his downtown office.  Any way it goes, it will be when my mom and brother are here.  At least I won’t have to get blood (5 hours) while they are here, just an appointment with Dr. Wehbe.  Those normally don’t take long.


So, it’s Mayo on Thursday (not Friday).

Then my mom and brother and coming to visit.  During that time I will have an appointment with Dr. Wehbe.

Probably start chemo the week after.  Chemo for Christmas.  FUN

Who knows how long I’ll be on chemo?   Probably until I show improvement or I am dead.  Rah.


Sorry for the short post.


Doh it is December already

Oh crap, it is December.   Where the hell did November go?  I remember Thanksgiving, and the next thing I knew it was December.  That puts me 2 people behind in buying gifts,  my mom and brother.  Well, it is looking like Amazon gift cards again.  Man, I have gotten boring in my sickly state, I won’t blame this on age cuz I did well on Teresa’s gift.  Oh well, at least I know they can and will use the Amazon gift cards.  Better than me surfing to Amazon and buying something neither of them need.  But see, I used to great at gifts, now I sorta suck at gifts.  Good thing Amazon has gift cards.


Tomorrow, I get blood.  I need it.  My head is woozy and I am very fatigued, then the list of problems goes on.  We figure my hemoglobin should be around 7.5 if I am lucky.  It was 8.3 last Wednesday.  And if you do the math, should be 7.3 to 7.5.  I am hoping it is not 7.3 cuz that will mean that I will be back sooner as opposed to later.  Crap, another bad thing with it already being December, I have register to get blood again.  Every month I go thru this.  ID and Insurance Card, sign here and initial here,  OK, go have a seat.  Bleh.


Friday is my DLI#3, Thursday is a handful of appointments to make sure I am OK for the DLI.  Good news is the weather is supposed to cooperate.  At least the Iowa part of the weather is supposed to cooperate.  Cool and clear is what is predicted.  Who knows what its supposed to be in Rochester (the Rochester weatherman, I guess)?   But I am faithful that Teresa will be able to get me to Mayo in one piece and than get me home on Friday.  She is an excellent driver.


I found out all along I have been playing Skyrim regular edition, just discovered my mistake and purchased the Skyrim Special Edition.  I feel so silly that it took me so long to catch on.  I watch YouTube videos and they talk about the Special Edition all the time.  But I just assumed I had the Special Edition.  Turns out that I bought my regular edition probably a week before the Special Edition came out.  That is my luck.  Anyhow, it is fixed now, and I am playing the Special Edition now, and the biggest difference I have discovered is the water looks cooler, but there are other differences.


My new laptop isn’t being started being built until the 13th.  Getting it before Christmas is gonna be a longshot.  I hope I have it before Christmas.  I hope I have it like the 20th, but it takes time to ship.  Bah, I should have paid for overnight shipping.  But I paid too much for the laptop in general, but its a SWEET laptop that is guaranteed to last me a few years, probably last longer than I will.  That’s a cheery though now isn’t it.  Oh well, it’ll get here when it gets here, and I will load it up with crap like I always do.  And it will be my new baby.


Teresa’s gift is something she mentioned in Julyish, and talked about it.  But she decided it was too expensive.  Well, I remembered that conversation (not bad for a guy with memory issues from chemo), and got it for her.  She is either going to be really happy or really pissed that I spent so much and then really happy I got it for her.  Lots of thought went into this gift.  Probably the coolest thing I could have gotten her that she would want.


Pucky and Mojo have dental appointments on the 10th.  I am hoping they go better than the last dental appointments,  when Mojo had 5 teeth pulled.  Pucky only had 1 if I remember correctly.  Chihuahuas are famous for having bad teeth.  Genetics, you can’t beat them.  Anyhow, Teresa will take off work to take them, so I dont have to.  That is a good thing with it being cold and flu season, even though I got my flu shot it makes no sense me being around a lot of people sniffling and coughing.


Black Friday I think I will stay home

It’s the day after Thanksgiving and leftovers are on most everybody’s lunch list.  Not to be left out, I had leftover lasagna from a few days ago cuz after once having Teresa’s Thanksgiving food, I just couldn’t bring myself to eating too much again.  It’s all good though, the lasagna was delicious and the Thanksgiving leftovers will be there tomorrow and the next day.  I am the human leftover disposal unit in this house.  When Teresa eats a leftover I usually get confused.  She might have ate the leftover turkey, cuz I could not find that when I went looking for lunch.  Oh well, we got another turkey breast to be cooked real soon.  It’s all good.


I received a shirt in the mail today.  It’s a Gang Family Reunion (Thanksgivingfest) ZOO (where we lived at Ball State), remembrance t-shirt.  It’s really cool.  Black with white writing on it.  Thank you AJ, thank you for being my sister, thank you for being my friend, thank you for the t-shirt.


It’s Friday, that feels like a Monday, weird.  It’s all because Teresa got yesterday off.  As did most of America.  But she is “working” today, so it feels weird.


It’s Black Friday and according to Facebook, people are going nuts in stores again.  Don’t you know you can stay home and order most of this stuff online for close to the same price and the only personal damage you have to worry about is getting a hangnail.  Yup, in the past 2 days, I have spent too much money, without leaving the comfort of my bed.  Didn’t have to fight or wrestle anything away from anyone.  Yeah, some people love the physicalness of Black Friday, I say give me the prices and let me order from home.


I did it, I ordered me a new laptop.  This one gave me one error too many.  I probably could have reformatted this one and it would have been fine, but I wanted a new one.  So, my new laptop was expensive, so its gonna take me a few months to pay it off my credit card.  So what?  Teresa OKed it, and she is the only one that had the right to veto it. So, it’s all good, come around December 18th of so, I will have my new laptop.


I’ve been playing a little Skyrim again.  Going really slow.  Like 10 minutes here 20 minutes here slow.  But I am having fun, and that is all that matters.


Teresa went and got an XBOX Ultimate subscription and started playing The Outer World which is a First Person Shooter Role Playing Game set it space.  She seems to like it.  Seems to be having fun. And that is what I wanted for her.  PLUS my XBOX is finally getting some use.   Bonus-I get to play Oblivion on the XBOX.  I hope they have instructions somewhere cuz I remember trying to play it on the PC and not having much of a clue as to what I was doing.  But that was years ago.  So, anyhow, the subscription was a dollar for 3 months.  I guess in 3 months she’ll decide if it is worth the real cost.


Next week is DLI week.  I have no clue what this DLI is gonna do for me, but I will go get it done.  But before the DLI, I get blood on Monday.  Definitely Monday.  My hemoglobin should be around 7.5ish, I should be feeling very rotten.  The transfusions help for a little bit.  So I should feel ok for the DLI (the whole trip to Mayo for that matter).


Then mom and Jim will be here for a few days.  YAY