Massive Headache, wrong meds.

I have a full-blown migraine level headache and only Tylenol to fight it.  My own stupid fault for not refilling my Imitrex shots.  But I will muddle thru and all will be fine.  I know these headaches are from stress/anxiety.  My anxiety level is thru the roof, but I don’t want to sleep away my last few free days sleeping, so I am not taking more Clonazepam.  Not going to do it.  Yeah, it may be stupid on my part, relief of everything could come from 1 pill, no headache, no nausea, but at the cost of not being with my mom and brother.  I came to spend a few days with my mom and brother and that is what I am going to do.  Damn the headache.


Pucky and Mojo have both taken to crawling/laying on Jim.  LOL.  Mojo was first even.  This is funny cuz Jim claims to be neutral at best to the Chihuahuas.   At least they have someone they feel comfortable with.  Mojo still howls when Teresa leaves, but I really don’t thin it’s going to be as bad as initially thought.  This is a good thing.


Last evening we went to dinner at the Industrial Revolution Bar and Grill in Valparaiso.  It’s the place that Rodney and I discovered by accident last time I was here.  The food was great, service was great, atmosphere was great.  The temperature was COLD and the food coming out was slow.  Now, I can handle slow for good food, let them take their time to make it right.  But freezing the patrons doesn’t make sense to me, mom accidently sat under a vent and even though she wore a sweater, she was COLD.  But overall the food trumps the COLD and I have introduced Jim and mom to a new restaurant.  We all left happy and full.


Tonight we are going for Chinese.  At the little Chinese restaurant on Lincolnway in Valpo.  I forget the name of it, but we went there a few visits ago and it was good.  So we all agreed Chinese sounded good, so that is where we are going.


Mind boggling that I start the serious crap at Mayo in 3 days.  And my transplant is in less the 2 weeks.  And people wonder why I am having anxiety problems.   Some serious crap is about to go to down TO ME.  Scary stuff, very scary stuff.


If I can survive the next 2 months, I should be in really good shape.  Most of the big milestones that happen in recovery happen in the first 2 months.


It’s after the first 2 months, that is when Dr Alkhateeb might order more chemo for me.  I am still not sure why he thinks I need more chemo nor am I sure how much more chemo he was going to order.  All I know is I am very against this.  I really don’t want more chemo, heck, I don’t WANT the chemo I am getting for the transplant but don’t have a say in that.


Oh yeah, for those who have an interest.  Here is the address I will be at for at least 110 days.

Jeff Campbell
c/o Gift of Life Transplant House
705 Second Street SW Room #50
Rochester, MN 55902

If you are inclined, please do not send flowers or fruit.  But cards and letters are appreciated.


Yup, at least 110 days at the Gift of Life Transplant House.   Funny when I told the lady there we’d be staying for 110 days she said “I will put you down for 120 and see where we go from there”.  Not the most reassuring voice towards the 110 days.  But hey, we did 4 nights there with no issue, we can do 106++++ more with no issues too.


My head is screaming at me.  Gonna cut this now.  But of course I will find some music.


I can’t believe it’s happening so soon

I think I finished everything Teresa asked me to do today.  It’s getting down to crunch time.  We leave for my family’s home on Wednesday.  Have to be at Mayo in a week to start the transplant process.  Transplant is in 17 days.  Teresa and I actually did bust our butts getting things ready this weekend.  90% packed, not in the car, but in suitcases and boxes waiting to get jammed in the car.  It’s gonna be a tight fit until we get to my family’s house.  Then we should have some room.  Pucky and Mojo will probably spend 6 hours on my lap, lets hope for no accidents.  But it’s all good, we’ll make it to the Region late Wednesday night.  We’ll leave the Region on Sunday when we get up and moving.  It’s a 6 hour drive to Rochester from the Region, so it’s not a big drive/rush.  We should get to the Gift of Life Transplant House around 7 or 8pm.  Then on Monday I have appointments, a lot of appointments.  And with these appointments it begins.  How do you like that totally unstructured paragraph, goes from what I have to do today to what’s happening a week from now and everything in between?  My English teachers are all failing me right now.


Tomorrow I am going to have yet another CBC at Dr. Wehbe’s office.  Yup, another blood test.  This one to see if I am even close to needing a platelet infusion.  If I am close, we will be defaulting towards giving me the infusion.  Dr. Wehbe and I came to an agreement that it would be better to give me one early as opposed to me having to go to the ER in the Region and get an infusion there or getting an emergency infusion at Mayo on Sunday or Monday.  Better to be proactive then reactive in this case.  Cuz a screw up can literally kill me.


Speaking of killing me.  I still feel really good for a person who is technically dying.  You’d think this close to death, I’d feel sick or something, but actually with the exception of anxiety, I feel damn good.  I think I have said it before here, but I’ll say it again.  It’s going to suck that they are going to pump poison (chemo) into me and take me, who is feeling wonderful and make me feel like total crap.  I so wish there was a way to do this without making me feel so rotten, but alas, I have to have chemo in order to accept the donation.


I’m afraid that Hectic.blog is gonna take a big hit if/when I get really sick.  I know Teresa is updating my Facebook and then CaringBridge.   The CaringBridge site is really well done, even if some of Teresa’s dates are wrong in her posts.  But I have been asked by several people to have Teresa do the Facebook updates she did last time, I relayed that request to Teresa and I believe she is going to keep my Facebook up to date if I can’t. https://tinyurl.com/ybmvsd9h  This is tinyurl of the CaringBridge site if you are interested in seeing that.  https://www.facebook.com/HecticMind is my Facebook.


Me getting sick from the chemo is pretty much a given.  Especially if there is more chemo after the transplant.  Last time I spent more time sick than feeling good.  Leukemia 2015, is either missing in my head or a giant blur of things that happened.  Hoping the MDS 2018 is a little less traumatic, but Teresa promises to take more pictures for me.  I have the strange feeling that MDS 2018 is gonna be worse though.


I’m gonna lose weight again.  I hope to be able to keep off some of it.  Would be nice to not only get a new set of bone marrow but to permanently be 20 pounds lighter.   We have pretty much given up fast food.  Teresa has been cooking every night.  Which she will continue while I am down and can’t at the Transplant House.  Teresa is an excellent cook and I am looking forward to her cooking.


Still don’t know what most of the appointments on the 7th are for.  Mayo updated their computer system and programs, and things aren’t working quite right or so it appears they aren’t working quite right.  Most of them say they are with “Your Healthcare Provider” which is cool, but technically I have a whole team of them, so which one?  I assume 1 of them is Dr Alkhateeb.  Beyond that I have like 6 I do not know who they would be with specifically.  But I will be there and all will be well.  I know I meet with the pharmacist first thing in the morning, then the research people which I agreed to help out.  Then nothing for a few hours, then a bunch of appointments that afternoon.  It’s the ones in the afternoon with no information.  Weird.


It’s something like 82 degrees outside today.  Yup, Spring in Iowa, gotta love it.  It’s supposed to storm the next 3 days.  Yup, Spring in Iowa, gotta love it.  I’m gonna miss it.  But hopefully Rochester doesn’t get so ridiculously hot and humid as it does here this summer.  It would be nice to be able to go out and sit on the deck and enjoy the summer (I am not supposed to get a lot of sun), instead of hiding inside with the A/C blasting all the time.


I wish the Transplant House was able to give out room assignments earlier than the day before you are to arrive.  As it stands now, we are gonna have to get someone to grab our mail for a week or so and pack it up and ship it to us.  Then our temporary change of address which we will send in should take effect.  But since it’s the first week of the month and most bills are mailed to us the first of the month, that mail in the interim is important for the most part.


I broke 1000 words again when I didn’t think I had anything to say.   Heh.


At least there is a diversion

Mood is still great.  So happy about not being depressed and angry anymore.  Will always take a happy great mood over the down I was in.  However, anxiety is getting worse. 20 days til transplant, 10 days til things start at Mayo, and 5 days til we are supposed to leave to go drop of Pucky and Mojo and see my mom and brother.  Time is not on our side.  We got a lot to do to get ready to be not in the house for 4 months and just really not a lot of time to get prepared.  This is causing a lot of anxiety for me and for Teresa too.  It’s not that we put stuff off, it’s that we never knew if it was really going to happen, so priorities were skewed.  So whereas my mood is excellent, anxiety has me somewhat tied in knots and its not gonna get better probably for 20 days.


A moment about anxiety.  Anxiety has been with me for the past 30ish years.  It has kept me from doing a lot of things (most specifically school), and rises it’s ugly head whenever anything of importance happens in my life.  Where I can live with my bipolar, it sucks, but its just what it is…  Anxiety is always a negative, so hard to live with, impossible to live with.  This transplant and everything we have to do for it are feeding into my anxiety.  It’s taking everything in my being to continue on with all this.  Today the anxiety is really bad and I am not sure why.


I feel sorry for Teresa.  She never had anxiety before my leukemia diagnoses in 2015.  Now it’s getting bad again with MDS diagnoses of 2018.  She is having problems dealing with it.  She has taken Clonazepam (her own prescription) that is heling a little, she has a journal as well (similar to my blog, but she doesn’t share it with anyone but me).  I wish I didn’t keep bringing anxiety into her life.  Hopefully this is the last time.


I should be finishing getting ready for the trip, but instead I am watching the Greatest Royal Rumble on the WWE Network.  For some reason they decided to start it at 11am Central Time on a Friday.  A bit weird for WWE programming, but it’s creating a nice diversion.  And really, I did need a good diversion today.


Heh, they were still pounding on my neighbors roof by the time Teresa got home after 6.  That means it took them like 11 hours to reroof my neighbor’s home.  UGH, just kinda sucked to be me yesterday.  I should’ve went somewhere, but hindsight is 20/20 and I just lived with it.  My stupidity.


Made a deal with my oncologist (Dr. Wehbe), next Tuesday if my platelets are close to the cut off for an infusion (which they will be), he will order me a 6pack of platelets.  This came about because I don’t want to have to go to the ER in the Region to get an infusion a few days later or worse be really sick on the way up to Rochester.  So I should be getting an infusion of platelets Tuesday afternoon or Wednesday.


I did pack all my important D&D books, and a few notebooks, my big Skyrim book, and most of my computer paraphernalia (headset, gamepad, charging cables, etc…).  All of that went into my little suitcase.  I tried to fit all that in a smaller case, but it wasn’t going to happen.  So, I will make room for the little suitcase in the Dart.


We’ve been playing Pokémon Go every evening.  Pucky and Mojo love to go for the ride.  And Teresa and I just go around town and catch what we can and visit all the Pokestops and Pokegyms.  We may not be the highest level players in Adel, but we are tenacious, so basically if we see a gym, we take a gym.  I am, however, almost out of healing, so we need to visit a bunch of Pokestops tonight.  Tonight or tomorrow I will finally be ready to upgrade my Magikarp to Gyarados, just a week or so behind Teresa.


I just have to interject here.  The ladder match at the Greatest Royal Rumble was insane.  4 of my favorite wrestlers going at it.  An incredible finish.   Yup.  Impressive stuff.


Just got word that May 17th is confirmed as the date barring something horrific happening to my donor between now and then.  So, in other words, it’s a definite go.  Heh, was kind of sort of hoping it would be pushed off another month or so.  But in reality, this transplant has to happen as soon as possible, so the May 17th is all good.


I think I am going to cut this off now.  At least my ramble ended on a good note.


Better now.

My mood is much much better today.  You could even call it a good mood.  I am not angry or depressed anymore.  This is a good thing because we got a lot of stuff to get done before next Wednesday and being depressed and angry was keeping me from getting things ready.  And a good thing I am not angry at nothing anymore cuz if I was I would have wigged out at the roofers next door this morning.  Yeah, I know they were only doing their jobs, but early morning wakeup of BANG BANG BANG really sucks.  Anyhow, here it is almost 2:30pm and they are still pounding on my neighbor’s (the other half of our townhome) roof.


Went and got a blood test today, as I do every week.  My hemoglobin is still down to 10.6, my white blood count is still 2.9 and my platelets are down a few points to 15 (from 17 last week).  Pretty much what I expected them to be.  All the numbers are down from where they are supposed to be, so thus the transplant is a necessity.


As of now, I have 8 appointments on May 7th.  Only know about them cuz I clicked on the appointment tab on Mayo’s patient app.  They haven’t called me or emailed me, just populated my appointments.  But I guess it’s alright, this means it’s more definite even though we haven’t gotten the confirmation of the transplant date yet.  I am supposed to start treatment on the 8th, so the 7th for a bunch of appointments sounds reasonable.


Again for those who care.  8th and 9th are anti-seizure meds (pills) 10th-13th chemo 14th-15th other harsher chemo 16th a day off(?) 17th the transplant.  The transplant itself is a no brainer, they just pump the platelets in through the port I will have.  Takes about an hour, then they pump in 6 hours of fluids.  The whole day is like a 12 hour day.


With the exception of when I am getting chemo, I am staying at the Gift of Life Transplant House.  That is where all cards and such are to be sent.  I will post the address with our room number when we get there on the 6th.  The room number should be the same for all 110+ days we are stuck in Rochester.


Oh yeah, the reality of the 100 days, it may be up to ridiculously longer than that.  There is a better than average chance that we will be stuck there into or thru winter as well.  Especially if I have to have multiple rounds of chemo after my transplant.


Tomorrow is the Great Royal Rumble of All Time.  Starts at 11am Central Time.  Should be a cool show, I wonder how many hours they are gonna run?  But, not because we are totally sick of them, they are putting Brock Lesnar vs Roman Reigns yet again as the main event.  Doesn’t WWE know that we don’t want to see the same thing over and over?


WILL THIS POUNDING FROM NEXT DOOR EVER STOP?


The only problem with our neighbor getting his roof replaced is that our roof is going to look worse.  Hopefully our insurance company doesn’t do a drive by and say our side needs to be replaced.  Just can’t afford that right now.


It’s gonna be nice to see my mom and brother next week, even though it’s not due to the best of reasons.  I miss them, I want to see them before my transplant, and we need to drop Pucky and Mojo off.   Thankful to Teresa that she is willing to spend a few days there.  And good timing cuz we are going to be there on my brother’s days off.  So, it’s all good.


Off to do some work towards getting things ready.  Readers, you all have a good day.


Yeah, a very subjective list.  Feel free to bash the list as I have in my head.  PEACE.

A Bunch of Babbly part 2

Depression still going strong, throw in anger cuz that is how I role.  I am super angry at everything and snapping at Teresa right and left.  I have no reason to be angry, things here are moving towards our goal of getting us prepared to go to Mayo for my Stem Cell Transplant.  Depression and anger often manifest together with me (so does mania and anger, for that matter).  However, I haven’t been depressed for a long time in a long time, and this one really has a hold of me.  And now anger on top of it.  I would take another clonazepam to disconnect, but I slept enough today already.


Speaking of sleep, 7 1/2 hours, 3 hours, 1 hour.  11 1/2 hours total and I am still stupid tired.  After 7 1/2 hours on a CPAP I should feel totally refreshed and ready to be awake for the day.  Nope.  I admit that the CPAP keeps me from waking up as much as I do without it, but it still doesn’t stop all the wake ups.  Stupid machine.  Then I took a 3 hour nap, and another 1 hour nap.  The 1 hour nap ended in stupid nightmare, so any rest I was gonna get out of that hour is gone.


Tomorrow I go for my weekly blood test.  It was every 2 weeks, but Dr Alkhateeb moved it to every week.  He really is concerned I am going to run out of platelets.  So off I will go to the Cancer Center in Clive and let them vampire me again.  Hoping that my platelets are at least 14.


Teresa is washing/rewashing all of my clothes.  Specifically the clothes I am taking with me to Rochester.  She got HE sensitive skin, no smell super detergent to wash the clothes in.  I think she is being a bit paranoid about the clothes, but hey, I am not doing the laundry, if she wants to rewash my clothes, who am I to say no.  I just occasionally have to help get clothes out of the washing machine and occasionally have to carry the clothes from the dryer to the folding place.   Easy Peasy


All the clothes I am taking SHOULD fit in my big suitcase.  I have a small suitcase backup just in case, just not sure where I would fit it in the car.  Things are really going to be that tight.  One small suitcase might just be too much.  But I am champion of making stuff fit.  I will get EVERYTHING that we need packed into the Dart.


Yesterday I spun a Pokestop and it gave me 19 items.  The most either of us had ever gotten before was 11.  LOL.  Stuff just kept popping up on my screen.  Included in that was another up-grade piece to upgrade Porygon.  I haven’t seem a Porygon in a long time (well, since we started playing Pokémon Go about 2 years ago.  Anyhow, if I ever see more and catch them, I am ready to upgrade 2 of them.

Speaking of upgrades, I need to go out and get max or close to max level Pokémon that I have even candy to upgrade them.  I have probably enough candy to upgrade 12 marginal Pokémon.  I would like them all the be close to max power.  So when we go out Pokehunting tonight, I will be on the special lookout for the ones I can upgrade.


My back has been hurting a bit more lately.  I quit the Flexeril do to side effects.  Now, I have some pain pills (Norco) for when I gets bad.  But I don’t like taking those either.  So most of the time I am just living with the pain.  It sucks, but hey it could be worse, I could have cancer, oh wait, I do have cancer, so maybe it can’t be worse.


My red blood cells are smaller than normal.  This has caused concern in Dr. Alkhateeb.  He thought it was a vitamin B6 deficiency but I am taking B6 and have been for a while and the cells haven’t grown.  This is why Dr. Alkhateeb thinks I might need chemo after the transplant, at least partly that is.  Suckage.


In case I have not made this clear, I do not want chemo after the transplant.  I just want to go to the transplant house and serve me 100ish days.  But that’s probably not going to happen, I’m probably going to get a couple rounds of chemo after the transplant has taken hold.  So, it won’t happen right after transplant, probably a month or so after transplant would be my guess.  Still suckage.


Heh, it’s one week before we want to leave.  I’m pretty sure we’ll be ready.  I just need to get Mayo to send us something officialish to make Teresa happy.  I’ll message them when I get done here and ask for that something officialish.  Everything else is falling into place.  Just no word, is not good word in this case.  And it seems like since the beginning with Mayo we have had problems with getting the word from them.   But that is another rant.


I’m gonna go now.  I really need to calm down.  So here is Queen in drag.


A Bunch of Babble

Still dealing with this stupid depression.  Stupid stupid stupid.  I know I have nothing to really be depressed about, but I am down.  I don’t think Teresa’s hypothesis (which I mentioned yesterday) is a factor in keeping me down.  It might have been the trigger, but it’s pure bipolar crap that is keeping me this way.  I should be in a good mood, I am getting what I wanted, but no, I am down in the dumps, thinking the world would be better without me in it.  No, I am not suicidal, I never get suicidal, I just got really down depressed, which is where I am now.

Furthermore, I know if I came off my Nimodipine this mood would flip in a heartbeat or two.  But I am not that stupid.  Cycling like a madman is not preferred over being depressed.  Just another crazy thought that goes through my head when I am down.  Heh, my filter must be off today.  Don’t mind me, I’m just the crazy guy in the corner wishing he wasn’t alive but not going to do anything to reach that wish.


I did go to lunch with my good friend Drew.  Yes, finally, the lunch we scheduled months ago finally happened.  Beirman Furniture (the business furniture store he works for) picked up the tab…  Thanks Nate.  We did go to HuHot and it was exceptionally good today and not very crowded.  So we had a nice lunch and a nice chat.  I almost forgot I was depressed, hanging out with my friend was good for me.


Then the dryer vent cleaner guy came.  He was a really nice guy.  If you live in central Iowa, then use Central Iowa Duct Cleaning, Gary is a stand up guy, did a great job, came out next day and didn’t charge extra for coming out to Adel, and his flat rate (including tax) was 106.00 dollars and he really had to work for it on our dryer vent.  Two major plugs, it took him almost a whole hour to unclog our vent, but now air flows through cleanly.


Now, after playing happy for a few hours today, I am feeling drained.  I am thinking of taking a nap between when I finish this blog entry and when Teresa gets home.  I don’t normally take naps this late in the day, but today I might just do it.


Well, I heard back from Mayo, May 17th is Transplant Day, Day 0.  Which makes the 8th day -9, when I first have to show up at the hospital to take some anti-seizure pills.  2 days of pills, then 5 days of 1 chemo, then 2 days of the other chemo, then a day off, then the transplant.  Then we find out if I have to have extra chemo after I get the transplant.  I hope not, that would truly suck, but Dr Alkhateeb has mentioned this possibility several times.


May 17th also is the day that the dietician people rescheduled the class from May 3rd.  DOH.  They obviously didn’t look at my schedule when they rescheduled the class.  Well, the class is mainly for Teresa and I will be having a lot of prep before the transplant, so maybe she can go while I am getting prepped.  Or maybe then can move it til the 31st when it’s offered again if they really want me to be there for it.


We are going to try to leave here the evening of the May 2nd and head to my mom and brother’s place.  It’s a 6 hour drive and Teresa plans to work a full day, then drive it.  OUCH.  But if anyone can do that, it’s her.  Us going depends on 3 things.  1.  We get all packed in time.  2.  Sumpter Pharmacy can get permission to fill my meds a day early and gets them filled in time.  And 3.  We get official word from Mayo that the donor is on board and it’s all a go.  (Yeah, we still haven’t gotten that).  I’m not too worried about the first 2, packing I can do while Teresa is at work and Sumpter Pharmacy has never let us down.  The 3rd item might be an issue, but I will start harassing them soon to get official notice.


The plan is to get to my mom and brother’s with the dogs LATE on the 2nd.  Then spend the 3rd, 4th and 5th there, seeing friends if they are up to it, spending time with my family, and I would say trying to get the dogs adjusted, but 3 days isn’t enough for that.  Then the 6th driving the 6 hours to Rochester from Portage.  Then taking the 7th off to just relax.  Then start my treatment on the 8th.   Seems like a solid plan if you ask me.  Everything seems reasonable except the 6 hour drive after a full day of work on the 2nd, I think that is borderline insane.


Oh yeah, Drew said he’s going to come visit me up in Rochester.  I told him it has to be after 20 days after transplant.  I will be pale, bald, and wearing a mask, but I will be happy to see him.  But he said he was coming, I said he didn’t have to, and he said that he was coming anyway.  That’s the kind of friend I have in Drew.


I have a couple other friends who were talking coming up to visit me, I do not know if they are still planning on it or if it’s even crossed their minds in the months this has been pending.  I guess I will have to reach out and find out for myself if they still want to come.  You know friends seeing you when you are at your absolute worse, fun fun fun.


Room in the car is going to be tight for the trip up.  Teresa has already blackballed a couple things I was planning on bringing.  However, she has agreed to my D&D books. Since I am only taking 4 or 5 and then having Modenkainen’s Tome of Foes delivered up there.  The case I am taking them in will fit without much problem.  I just get the feeling that the 2015 Dodge Dart was not meant to haul 2 peoples’ stuff for 4 months.  I think there is more room in the Neon, but Teresa doesn’t like to drive it cuz it’s a stick, well maybe not more room, but different shaped room (squarer trunk).


I’m also taking my big book about Skyrim.  It’s about the size of 3 D&D books.  I will make room for it.  Yup.


I can’t seem to get my head around being away from home for 4 months.  And that is assuming I get out on time.  Everyone that I have mentioned the 100 days to has basically chuckled and said, “OH, your on the 100 day plan” inferring that most people get stuck in the transplant house longer than 100 days.  Oh well, this is my mental block, I guess I will just have to live it.


Damn, I have been blathering for 1200 words or pretty close to it.  I think I will go grab something musically and then sign off.


Yeah, I usually try to find a video which means something or is special to me.  In this case, you get a video.  Sorry.

Finding new/old stuff is cool

Beginning to feel the anxiety really building up.  May end up taking an extra Clonazepam (Klonnie).  Have generalized anxiety and specific anxiety issues really does suck.  Wish I was normal, right now I would just have specific anxiety and probably be able to handle it without resorting to meds.  Ah well, such is my life, get remotely nervous about something and it turns into harmful anxiety.  I know I can’t help it, that it’s part of what makes me who I am.  Just wish this part of me would calm down a little and let me have some peace.


I am still having problems with my right thumb.  I didn’t take proper care of it, so it didn’t get better.  Stupid me, I should have listened to Dr. Donahue.  I guess I will start taking better care of it this week and see if I can’t get it to stop hurting as much.


I have resumed writing my book.  As of now I have added about 600 more words, but I just started again, so that’s cool in my opinion.  Hoping to break 10,000 words tonight.   I hope to get a good chunk of the book written before I get chemo stupid.  But since chemo starts in 18 days, it’s gonna be near impossible to meet my goal, but that’s ok, after my chemo stupidity goes away, I will be able to resume writing and finish my book.  My goal for pre-chemo is ridiculous and a seasoned writer would have problems matching it.  Especially considering all the crap we have to do before we leave for my family’s house, which is in a week and a half.


We managed to clean all the old clothes out of the bedroom closet.  Took us all last evening and into the night, but it is done.  I’d like to say we are doing the responsible thing and donating all the used clothes to charity, but reality says we don’t have the time so it’s all gonna be garaged.  Most of the clothes were thrashed anyway.  I did find my ZOO sweatshirt circa 1989, which I kept for sentimental reasons.  Also found 3 pairs of jeans and a bunch of shirts that will fit me now.  Weird since we haven’t really went into the closet for several years.  Now I have more clothes that fit me than Teresa does.  I never figured myself to be a clothes horse, but damn I own a lot of t shirts.


Tonight we plan to move the great clean clothes pile into the closet.  The great clean clothes pile has grown entirely too big over the years.  We should have never started it and I am glad we are finally going to get rid of it.   It started as a temporary spot to pile cleans clothes before they were put away.  Then more clean clothes, then more clean clothes, and so on and so forth, it’s grown out of proportion.


Teresa is really digging God of War.  Kratos has turned into an even bigger jerk than he was in previous games.  And Arteus (Kratos’ son) is still a putz (but you can give him upgrades to his bow and equipment that makes him a worth while putz worthy to tag along).  Teresa found a walkthrough online so she started the game over and is amazed by all she missed on the first try.  It’s all good, she is having fun, that is all I wanted for her.  Oh yeah, for those that are familiar with the God of War games, Kratos sleeps with no one. Very not like him in previous games.


Well, Teresa have started on the Great Clean Clothes Pile, I guess I should help.  A little music before I go though.


Insurance Approved, Tentative Date Set

As I said on Facebook, it has been over 60 hours since I last slept.  Had a weird but not unheard of reaction to Centrum Men’s Multivitamin.  I slept like a baby for the first two nights taking it, since then I have been awake.  Insomnia is definitely not new to me, however insomnia with an actual verifiable cause is.  But seriously, if anyone was going to have such an extreme reaction to 3 Multivitamin over 3 days it would be me.  Dr. Alkhateeb is going to be upset, he is the one who told me to that the Multivitamin.  This was definitely a mistake to do.  I agree that I should be taking some vitamins, but obviously not a super Multivitamin.


Tomorrow I have a blood test/appointment with Dr. Wehbe, the oncologist who saved me life the first round of Leukemia.  I finally get to tell him about the pending transplant.  I mean he knows but doesn’t know the details of what all has and is going to happen before the transplant.  And I think he has the right to know.  I also have to make sure that he understands that no one did anything wrong when the chromosomal stuff was missed, I misunderstood Dr Alkhateeb when we spoke the first time.  Chromosomal stuff is not normally checked on a bone marrow biopsy unless the patient gives a clue that it should be.  I was so typical AML that there was no reason to check.  So, it’s all good.


I just got great news, insurance approved my transplant.  And they have a tentative date for day 0 (transplant day) of May 17th.  Yeah, buddy.  Color me happy.  It puts my 100 days ending on September 1st.   So maybe, just maybe, I won’t miss Fall.


Tomorrow also we head back to the Gift of Life Transplant House and then Mayo early in the morning on Friday.  Who schedules appointments at 6:10am?  UGH.  Anyway, it’s just a 1/2 day visit at Mayo and then we head home.  Just a blood test, the Renal Exam that I failed before, and a meeting with the cancer shrink.  No worries here, it’s all good.


The wind is howling, it’s been raining all day, supposed to turn into snow.  Today is just a yucky day outside.  Tomorrow is supposed to be much nicer.  And next week is finally supposed to look like SPRING 60+ degree days.  Woot.  I will get a week or two of Spring before I have to report to Mayo.


Pucky and Mojo will be heading to the Region on the 28th and 29th or the 5th and 6th.  Next weekend or the weekend after.  Probably the weekend after would be my guess.  I have to be taking meds at the hospital on the 8th (chemo starts on the 10th I believe).  So time is running out to get the dogs to my family in Portage.  Heh, no worries, we’ll get it taken care of.


My mom is making the trip up to Rochester sometime during the week after transplant, when I will be totally a lump.  But hey, she wants to check on her baby.  I would never tell her not to come.  I assume there are flights from O’Hare to Rochester.


So tired, and my thumb still hurts, so I am gonna cut this short.  Got great news today, so happy to share it here.


My plans have plans

Hmm, I sprained, strained, or tore something inside my right thumb.  Started hurting on Friday.  I think I am going to go to the doctor (well, Chris, the PA) tomorrow.  I wonder if the Adel Mercy office has an X-Ray machine?  Would be easiest for me if they did, then I wouldn’t have to go somewhere else.  For some reason I am thinking they do not, I am thinking I remember him saying so before.  Oh well, I will go see him, let him squish the far in joint, watch me squirm and yelp and then go about my business, which might include going to Mercy West Lakes and getting an x-ray of my hand.  Not a fun way to spend a Monday, especially not with other issues pending so close.


I am typing this mostly left handed, so I am not tempted to space bar with my right thumb.  It’s actually quite difficult.


Because I can’t type comfortably, my book that I am writing has been put on temporary hold.  I am approximately 8500 words in and feel pretty good about that even though I started writing 2 weeks ago.  I didn’t write anything while at Mayo, had my mind on other things.  I tried to write some (about 200 words) on Friday evening and it hurt my thumb a lot.  So, I have called a book writing hiatus.


If we do nothing for the speeding up of my transplant, it’ll happen in about 5 weeks or so.  15 work days is what insurance wants to approve the transplant.  I hope to be able to call the insurance company and possibly speed things up a bit.  I have the eerie feeling that my platelets are gonna tank 1 more time before the transplant, which would mean another platelet infusion which would cost them money.  So, you can see it’s in their best interest to approve me for the transplant early.  According to my transplant doc, it’s a slam dunk case, I get the transplant or I die.  Simply cut and dry.


Teresa discovered a way to play with her PlayStation on her Mac.  This is a good thing because there really isn’t a whole lot to do up in Rochester if you are the Primary Care Giver and not actively giving care.  Teresa plans to work, thus we are dragging her Mac up (used to be my Mac, long story) to Rochester.  If she happens to play the new God of War game in her spare spare time, it’s nobodies business but hers and I guess technically mine.


I am taking my D&D books with me.  I am gonna work on a large campaign for when I can get back to playing online with my friends.  This will probably end up being the largest campaign that I have plotted out, but when all you have is time, it’s, I won’t say easy, it’s less stressful than when you are budgeting time that you probably should be doing something else with.  And Mordenkainen’s Tome of Foes is supposed to come out May 29th, so I have a new book of monsters to throw at the group.  Yeah, this campaign should turn out EPIC.


We still haven’t taken the dogs to my mom and brother yet.  We are holding out to the last possible minute.  It’s going to be rough to leave them behind, but this is what is the best for them.  The other options we had were too expensive and Pucky and Mojo wouldn’t get the amount of human contact they want/need.   So, when the transplant is scheduled, we will make the pilgrimage to the Region and drop off our furbabies.


I have lunch scheduled on Tuesday with my friend Drew.  Gonna suggest Gusto Pizza or HuHot Mongolian Grill to him and let him make the choice.  I am fine with either of these two places.  Gusto cuz well, it’s the best pizza we have found in the Des Moines area or HuHot cuz I am soon not going to be able to have fresh fruits and vegetables for quite a while.  So either choice is cool with me.


Yeah, for you who may be interested in sending something to me while I am in recovery.  Don’t send a fruit basket and any flowers.  Beyond the reason that both can kill me, they are also not allowed at the Gift of Life transplant house and will be rejected.  I will post the address for cards and stuff like that when we have a permanent housing spot for the 100 days.


Speaking of the 100 days.  Teresa overheard some of the Primary Care Givers talking about the 100 days.  Or the 160, 240, and year that these women had been in the transplant house.   I will go fricking NUTS if I have to stay much longer than the 100 days I was told.  I can understand if I am sick they aren’t letting me go, but if I am healthy, the damn well better let me go when they said they would.


As it stands, I won’t be cleared to travel anywhere for at least a year after my transplant.  So May 2019 is what it looks like.  That is ok, we wont be able to afford to travel before then anyway.


It snow again last night.  Started on APRIL 14 and snowed right into APRIL 15.  Someone needs to wake up mother nature and let her know that he world is supposed to be experiencing Global Warming.  Snow in mid-April is ridiculous.


Tomorrow I need to call Julie, my shrink’s secretary and relay the info that Mayo send to me for my shrink.  They asked for a letter with diagnoses and treatment stuff.  Still don’t know the name of my cancer shrink and I guess they aren’t giving it to me for my shrink either.  Oh well, we have a fax number and a general idea of who to send it to for sharing with Dr. Alkhateeb and the Cancer Shrink.


Heh, when I started typing this entry, I didn’t think it was gonna be over 1000 words.  I guess I had a lot more on my mind than I have had recently.  I guess I’ll cut this off here, I think I have ran out of ramble for now.


I may have played this song before on my blog.  But hey, “Don’t Stop Me Now”

Too much Anxiety is not a good thing

Anxiety has been a total beast today.  To the point where it’s making me physically ill.  I’d puke if I was able to (long story as why I can’t puke).  I just want next week to be over.  24 tests of appointments in 4 days is a lot.  I think a normal person would be feeling some anxiety over this, and I am far from normal.  For the new readers, I am bipolar and have a plethora of anxiety disorders, this is a big deal for em.  Anyhow, I know it has to be done, so I will do it.  Anxiety be damned.  I took an extra clonazepam today which has helped a little but makes me so fricking drowsy.  Bad enough to have cancer fatigue but to add med fatigue to it, it’s being rough staying awake.


Teresa is going to Palmer’s Deli to pick up dinner.  I’m not a huge fan of theirs, but hey gotta let Teresa get the dinner choice win from time to time, right?  I am getting what they call a sub, which is hamg, turkey, salami, lettuce, tomatoes and red onions (I think that’s it.  I get it -red onion and plus mayonnaise.  Oh, it’s served on ciabatta bread, so it’s all good.  Plus is get a huge rice krispie block, so it can’t be all bad.  Might have ordered soup tonight but Teresa has to stop at the store tonight, so whatever we got had to be able to sit out in the 20something degree weather for the time she is at the store, so no soup.


Still very happy about the nothing necklace Teresa got my for our anniversary, sometimes soon I will post a picture.  Just being lazy about taking a picture right now.  I mentioned this necklace the other day.  A little history this time.  My original nothing necklace was bough around 1993 when I was buying accessories for my SCA garb.  I decided I liked it and began wearing it just about everywhere.  For years, if you saw me I had on my nothing necklace.  At the time the nothing necklace was a bronze ring on a leather necklace, Keria (my chow at the time) ate the leather, so it was replaced by a strap of lingerie.  I wore this for a long time, not quite sure why I took it off or subsequently it got lost.  But lost it is for now.  A lot of memories are attached to that necklace.  Mostly good ones.

Come our 25th Anniversary, Teresa went and bought me a solid silver nothing necklace.  Just a silver ring on a leather necklace.  Memories came flooding back, like I said mostly good ones.  It means so much to me.  I love her so much, I can’t love her more, but if I could I would for getting met his necklace.


Tomorrow I am gonna watch Supercard of Honor on the Honorclub by Ring of Honor.  Should be a really good show.  I am actually thinking I might be more looking forward to this wrestling PPV over Wrestlemaia on Sunday.

Sunday is the biggest card of the year for the WWE.  Unfortunately I won’t get to watch all of it live cuz even though my ipad has cellular, there are cellular dead spots on the way.  But they put it on the WWE network a couple days later, so its all good.


I had to bail on my first book attempt.  It was good while it last 7500+ pages, but it was too tough to write about Washington DC without having exacting knowledge of the area or at least having been there once.  So Bryan McKinley will never be there hero he deserves to be.

I know I said the Orcs, and Elves, and some such was BORING.  But hopefully my new book attempt won’t be rehashing what has already been hashed.  My new book, so far, is about an Orc who got knocked out and missed the whole battle.  I am only 750 pages into this one (having started it today while dealing with a lot of anxiety).  But it’s flowing pretty good in my opinion.  At this point I have no idea where he is going, but hey, he’ll tell his story.


The updated weather for our trip Sunday is the same as it was.  Snowy and Windy the whole way.  Gonna take us 5 hours I bet to do the 3 1/2 hour trip.  Not looking forward to the ride, so glad Teresa does the driving.  Did I mention that the Winds pick up the further north we get.  Yay rah.


I have 24 tests or appointment in 4 days next week.  A lot of rushed meetings.  But it’s all good, most are in the same buildings.  I am dreading the bone marrow biopsy #9 and the Spinal Tap the most.  I am curious to see what a cancer psychologist will have to say.  I still wonder what happens if I fail one of these tests, do they tell me No transplant and I am just doomed to die from AML?  Interesting question.


I haven’t played any games for a few weeks.  Just having felt like it.  I’m chatting with my bipolar buddies a lot more over at Edwinas.  And on Thursday nights I do my Acute Leukemia chat.  Sleeping a lot, so I get up and start writing or have lunch and then start writing.  Today was just weird cuz of the Anxiety.


Well, Teresa should be home soon, so I’ll go now.  Music this time….