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.

We made it, and random babbleage.

We made it to the Region, more specifically my mom and brother’s house late last night.  We did make it almost exactly 6 hours, which is great time.  The joke of the night was “Teresa got her pilots license and we flew here.”  Anyhow, so comes the start of the minimum for 4 months away from home.  I am happy to be here with my family, but still upset as to having to be away for at least 4 months.  But anyhow, I am gonna make the best of being here and try to not freak out any more as Monday draws closer.

The being said, I am still plenty freaked out about Monday, well not so much about Monday, more like Thursday.  See, Monday is just appointments to talk.  Then Tuesday and Wednesday are just the taking of anti-seizure meds.  Thursday is when the chemo starts. 5 days of the lesser of the 2 chemos.  Then I get a catheter for the chemo on the last 2 days 😦  Cuz the chemo is so nasty they have to flush my kidneys continually while giving it to me.   Scary stuff.  Plus, this will be the first catheter I have ever gotten while conscious.   Stupid chemo.

Jim asked me if I wanted to go to HuHot tomorrow.  It’s 100 miles more in the car and Teresa wouldn’t be able to go cuz she has to work.  So I chose to pass even though I do love HuHot.  It’s just that I don’t really want to spend that much extra time in the car after 6 hours to get here and looking at 6 hours to get to Mayo.

I hate my back, every morning no matter how I sleep, I wake up in some level of pain.  It sucks.  Today my back hurts significantly, but I am not gonna take a pain pill.   I don’t want to be stonedish while around my family.  I am sure most of you understand.

Mom is making me an egg roll for breakfast this morning.  She says these egg rolls are “really good”.  So, we shall see shortly how good they are.  I told her I only wanted one because I don’t normally eat breakfast.  Her cooking for me brings back all sorts of warm fuzzy memories. — For the record, the egg rolls were very good.

Oh, for those who may have missed it.   I am having a Allogenic Stem Cell Transplant on the 17th.  Which means, I am getting Stem Cells from a donor.  I am not having a bone marrow transplant, which I thought I was getting earlier in the whole process.  Although, the who team is called a Bone Marrow Transplant Team.

I have no clue what I want to do today.  Jim asked, and my response was I was still asleep.  I am all for just hanging out here.  Lunch will probably be Steak n Shake, even though that is what Teresa and I had for dinner last night.  The Steak n Shake here in Portage is really good.

Part of me doesn’t want to go thru this transplant now.  No, I am not going to cancel, it’s just going to suck.  The whole process is just plain going to suck.  From the first meeting with the Pharmacist (Monday at 8:45) until the last day at the Transplant House, it’s gonna suck.  Just saying.

OK, I am done whining about it.  Sorry for the last section, just feeling sorry for myself.

Pucky is happy as a can be to be here.  Mojo is happy as long as Teresa is around.  This morning Teresa went out to get some stuff from the car, Mojo howled.  Woke everyone up.  I think it may be a long 4 months for Jim and mom.

We exchanged Birthday presents last night since I am gonna miss Jim’s and mine.  I got the D&D Legend of Drizzt (however it’s spelled) game and a cool tshirt.  We got mom a really cool Glow in the Dark Owl wind chime.  And we got Jim a really cool blue tooth skull speaker.  Surprised how good the sound from it is.

This might be one of the weirdest videos of all time.   So, here ya go.

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 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.  This is tinyurl of the CaringBridge site if you are interested in seeing that. 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.

Things to do, so I’ll write on my blog

Teresa is reading a new book from one of her favorite authors… at least she is not freaking out about the transplant at this moment.  I’m doing my best not to interrupt her, she needs some peace right now, but it’s hard considering I am freaking out a little about T-Day coming up quickly.  My biggest freak out point though is still how we are going to fit 4 months worth of stuff into the little Dodge Dart.  I did tell Teresa that my little suitcase with the D&D books and the Skyrim book and the computer stuff is a necessity after she told me it wasn’t.  I am going to need stuff to do once I get my brain back in gear after chemo, so that suitcase is full of the stuff to do.

It’s Saturday, the day we were supposed to get really busy and get the non-clothing stuff packed.  Teresa is reading and I am blogging, needless to say, packing isn’t getting done.  I guess we will get on it after she finishes her book, cuz I wouldn’t ask her to put the book down (or her ipad, but same difference).

We bought these bags from Amazon which have stiff sides.  They have come in super handy on our trips, I think we have 6 of them.  All the little loose stuff; meds, Tylenol, fans, cables, stuff like that all go into these bags real easily.  The bags were made for grocery shopping, so they aren’t huge, but they are big enough for quite a bit of stuff we are packing in them.

My thumb is still messed up, since I did baby it for a week, I am guessing it’s just another joint in my body with tendonitis.  It doesn’t hurt continuously, just occasionally, mostly when I try to lift something.  Most often that is when I try lift my laptop one handed without thinking.  My thumb has hurt so bad the I have almost dropped my laptop numerous times.  I hope that it gets better eventually, cuz having your right thumb not working correctly when you are right handed is awkward.

I think Pucky and Mojo know something big is about to be happening.  I think they think we are gonna leave them here with Jay (our neighbor) taking care of them.  Gonna be a big shock when we drive them to Portage.  My mom does really love Pucky, not so much Mojo.  Pucky is a much friendlier dog.  Mojo is a chicken and is standoffish to people who aren’t me and Teresa.  But I am positive that Mojo and my mom will eventually get along well.  It’s not like they are gonna have much of a choice.

I know I have been writing a lot in this blog lately.  Well for those of you who have been with me from the beginning you know I started it as a way to blow off some anxiety.  Well, that is what all these blog posts have been, anxiety driven blather.  Sorry if it has bothered anyone, but again I point out that I write this blog for me.

110ish days, if things go according to plan.  That is how long we are gonna be in Rochester.  I still am having problems getting my mind completely around 4 months being away from home.  Worse, 4 months away from home while sick for a good portion of it.

If things go off plan, that 110 days can turn into many more.

The Gift of Life House isn’t so bad.  No TV in the rooms sucks.  No eating anywhere but the dining room is inconvenient.  Having to make your bed every day, um aren’t I an adult?  But having a meticulously clean place for 30 bucks a night is hard to beat.  Plus my morning blood draw can be done at the House, Mayo has it set up there, so I don’t have to haul my behind to the hospital every morning AND just about every afternoon.  I’ll just have to go just about every afternoon.

Dr Wehbe (my local oncologist) told me about how getting too many infusions can make you start rejecting them.  I have had A LOT of infusions since April 1, 2015.  Let’s hope I don’t start rejecting any time soon.  That would truly suck beyond recognition.

Oh, yeah, yesterday was PCH award day and yet again they had no winner for their big prize (surprise).  However, what did come as a shock was that they announced that the price was still available today and I believe they are having another drawing tomorrow.  It’s not like I am going to win, but I really hope someone does.

My book is on indefinite hiatus until I recover from Chemo Brain.  Which shouldn’t be so bad this time unless I do have the chemo after my transplant.  Then it might be a year to a year and a half until Chemo Brain is gone.  Otherwise I was looking at 3 to 4 months of not being able to think clearly.  I really hope I don’t have to have the extra chemo.

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.

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.

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.

More CPAP Blues, thank you Dr. Google

I went and saw Dr Donahue today (Chris, the PA, had today and tomorrow off) about my thumb.  She was very sympathetic about it.  Relayed a personal story of one of her fingers which had similar pain.  Explained that normally they prescribe NSAIDs and then send you on your way.  Well, because my platelets are so low, I can’t do NSAIDs at all.  So she tried to prescribe Prednisone (you know, the steroid that solves everything).  Since my transplant is in like 5 weeks, it just didn’t seem right putting Prednisone in my system right now, so I chose not to have it filled.  She said without treatment my thumb will probably hurt for a week to a week and a half if I take it easy on it, which I am trying to do.

OK, I went back on the CPAP per Dr Alkhateeb’s instruction and I am super compliant, getting 100 out of 100 on the app.  That’s right, I am doing CPAP perfectly according to ResMed.  However, during the day I am still fatigued/super tired.  I napped for an hour and 2 snoozes and failed at napping a 2nd time but got 10 minutes, so it’s all good.  I did some research with Dr. Google and he recommended a dental appliance for sleep apnea in conjunction with my CPAP.  Dr. Google seems to think I might not have sleep apnea at all and that I might have Upper Airway Resistance Syndrome, which according to a lot of stuff I read presents almost exactly like sleep apnea.  The “cure” for UARS is the same dental appliance used to treat sleep apnea.  Interesting.  It’s just a mouthguard similar to what football players wear, just designed to jut your lower jaw forward a bit to open said airway and keep from waking you many times during the night. Now, some places online say that this is uncomfortable at first, but you get used to it.  There is also a chance that it might loosen a crown or two in my mouth, that would be a real concern.  However, if I am gonna use the CPAP per doctor’s orders and not nap all the time per doctor’s orders, I have to do something.  And with all the money we shelled out to Mayo, we wouldn’t have to pay a penny for the dental appliance.  The only question I have is how long does it take to get a custom made dental appliance?  For that I will call Adel Dental Group tomorrow and ask.

Hopefully my transplant paperwork got to the insurance today.  It was supposed to.  15 work days from today is when they are supposed to give their approval.  That is when the magic begins.

I have no clue when we are taking the dogs to my mom and brother, it’s just going to magically happen over a couple of days between now and when the transplant procedure begins.

I have no clue when we are gonna get done all we need to get done, especially with my bad thumb slowing everything down.  But we shall persevere, what doesn’t get done just doesn’t get done.

Drew never called me back to confirm lunch tomorrow.  I guess I will call him later.  Would hate to miss lunch with my friend because we failed to communicate.

Dr Alkhateeb put me on Centrum Multivitamin with Minerals.  Which is all good and such, just every time I take a vitamin I get a touch of heartburn.  Now true heartburn is an impossibility for me cuz of my surgery in 2004.  No acid can get anywhere near the area of my chest.  So, it’s weird to have this little pain in my chest a half hour after taking the Vitamin.  I had this pain the last time I tried Multivitamins so I stopped.  Now I kinda have to take them.  So GasX to the rescue… every night.

I took care of everything today that I had to take care of.  Which consisted of making phone calls and relaying information.  Tomorrow I get to do more of the same, and possibly a trip to the doctor again for a referral to a dentist for the aforementioned dental appliance.  But I am gonna call the dentist first and make sure we can get it, and get it fitted correctly, in 3 weeks.

Hoping everything goes smoothly over the next few weeks.  Really can’t afford anything going wrong right now.  Already have my thumb being an issue, would hate to add anything else.

Anyhow, Teresa just got home.  So I am gonna go.

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”

Mayo, Pokémon, Teresa and Me

We got home from Mayo about an hour ago.  Tired, very very tired.  4 days of run here, run there, wait, run some more.  Every test that was promised happened except no Spinal Tap (darn) but definitely bone marrow biopsy #9 (with #10 scheduled already).  I managed to fail and unfailable test, I failed the renal exam cuz I could not pee on command and they were afraid to do the catheter thing cuz my platelets were so low.  So, we are heading back next Thursday for tests starting at 6:10am on Friday.  At least this time it is just 1 night and 1 day.  I am pretty sure after this week, next Friday will be a chump when it comes to the running we have to do.

Dr Alkhateeb made some points about my fatigue issues.  Like I shouldn’t really be having them.  So we are cutting Ambien completely, regardless of if I can sleep or not.  I am gonna be restarting my CPAP now that I google what I had wrong last time.  He also put me on a multi-vitamin do to my stomach surgery 24 years ago.  Also along with all this, I have to get up and move around more during the day.  Meaning a lot less napping for me.  The changes are not going to be easy, but heh, I can do it.  He said that he will not do the transplant if I am sleeping 12 hours a day, motivation enough.

Teresa has agreed to start doing stuff with me in the evenings (get your minds out of the gutter, or maybe it was just my mind).  We are gonna start walking or something like that, take the dogs out for evening strolls.  Something more than me walking back and forth in my house.

Weird thing, with the exception of the 9 day before transplant and the day of transplant, Mayo does its thing out patient.  Yup day 1 after transplant you are sent to stay in the transplant house.  You get up in the morning get blood drawn, then if you need blood products (hemoglobin or platelets) you go to the hospital and get it.  Otherwise you just go about your day at the transplant house.

Speaking of the transplant house.  It was everything we expected it to be.  No TV in the rooms was a little weird.  And eating only in the dining rooms was a little odd too.  But the place was meticulously clean and everyone seemed friendly.  So, even if it didn’t have a 30 dollar a night price tag, we would probably stay there.

My book was coming along well, til I determined that my fight scenes needed help, so another book was bought to read about writing fight scenes.  So, after I finish reading this new book, I will go tweak the fight scenes.  I tell ya, I am liking what I have written so far and I am by far my own worst critic.

You can tell the dogs missed us as much as we missed them.  Leaving them for however long is going to be hard.  Oh, I say however long because Teresa met some caretakers at the transplant house who were talking about being there for 100s of days one lady almost a year.  Gods I hope I don’t have to stay in Rochester for anywhere near that long.

I really should play some of my new games.  But I just haven’t felt like it.  I guess I just haven’t really been in a gaming mood.  That’ll hopefully be changing soon.

Oh yeah, DUH, the date of the transplant.  Still don’t have that as insurance now has 15 business days to approve it.  So we don’t start holding our breath yet.  The day is coming sooner as opposed to later.

We met more members of the TRANSPLANT TEAM while we were at Mayo.  Good thing we did, cuz now it makes a lot more sense.  We got a lot of questions answered and I feel pretty comfortable with the whole thing.

Dr Alkhateeb is very concerned with my bipolar.  On Friday along with some tests, I am meeting a Cancer Shrink.  Well, a psychiatrist who deals exclusively with people dealing with cancer.   I have no clue if she will know how to handle me, but we shall see.  They have also promised me talk therapy while I am being treated.  So, that is all set.

It figures that today, the day we left Rochester, was the first day where it was truly nice outside.  It was 50something, all the snow had melted.  It was a truly beautiful day.  The sun came out for the first time in our 4 day stay.  It’d been nicer if it had come out yesterday.

Oh yeah, we played Pokémon Go while we were in and around Mayo.  It was fun playing the game with Teresa.  We did some raiding, we gym battling, and a whole lot of catching.  Actually looking forward to going back just for the Pokémon, because now I am in the Pokémon rat hole of a town Adel.  Don’t get me wrong, I love our little town for a lot of reasons, but not because of it’s Pokémon craze.

Anyhow, I think I covered everything I wanted to cover tonight.  Thank you to my faithful readers, my fair-weathered readers, my new readers, my old readers, and anyone else who reads my ramble.  A little music to send you on your way…