Day +90, 2 days to go (hopefully)

Yup, you read that right.  It’s been 90 days since my 2nd birth, the day I got my transplant.  So we have actually been here 101 days, counting all my time in the hospital getting chemo.   Dr Alkhateeb said if all the tests came back good from today, we will be free to go after seeing him.  Which means we will leave on Saturday.  Because our appointment is too late on Friday afternoon to check out of here.  Check out time here is by 2pm and we don’t see the doctor until 4pm.


The first 2 appointments today were x-rays.   A fancy smancy bone density x-ray and then a straight up normal set of chest x-rays.  Nothing really to say about either of them, they were both running early and I was back at the Transplant House in about an hour and fifteen minutes.


Back at the hospital, a couple hours later.  The 3rd appointment was yet another Pulmonary Function Test.  This one I did much better on than the last one a few weeks ago.   Not coughing and being able to breathe is a good thing.  That test started early too.  I swear she added more tests or more likely the nice lady who did it last time edited out some tests.   But anyhow, I went thru it with not so much as a single cough.   The nice lady this time told me I did exceptionally well.


Then I wandered down a few floors on the elevator and checked in for my bone marrow biopsy.   Teresa joined me while I was waiting.  They too were running just a smidge early (by smidge, they were 5 minutes early by my figuring).  They took us back to the prep room and the nurse who brought us back was replaced by another nurse who had laryngitis, she said it was the tail end up it, but I explained I didn’t want to risk catching anything, so she went off to find a mask.  That is when the 3rd nurse came in,  proclaimed it was her room and she would be taking care of everything.   And in doing so, she proceeded to take care of everything.   While she was hooking up the saline drip to my Hickman Catheter a man came in and asked me how many of these I have had (the answer is 11).  He then, instead of explaining what was going on, asked if we had any questions or concerns, which we didn’t.  I explained to him that this bone marrow biopsy was one of the keys to me getting to go home this weekend, this will be the best biopsy I have ever had.   We all laughed.  After about a half hour of waiting they came and rolled me back to the procedure room.  Where, they had me undo my fly and roll on my side and scoot way over towards the edge of the thing I was on (It is a chair that unfolds into a bed and goes up and down as needed).  He then positioned me just so and proceeded to start marking locations on my hip.  About 10 seconds later I was asleep.  I woke from deep sleep to him still digging in my hip bone, but it didn’t hurt so I didn’t say anything.  He finished shortly thereafter and I opened my eyes to the anesthesiologist staring at me.  Kinda freaky being stared at while you are asleep, but I guess that is her job.   He pulled up my pants and rolled me back to the prep room.  Where I ate animal crackers and drank apple juice.   Then after about 20 minutes or so, I got unhooked and we left.


We made 2 stops before we left the hospital.  The pharmacy where Teresa had 10 prescription refills waiting.  Yes, they were all mine.  Then we made the long haul to the popcorn store in the basement, where Teresa bought me 2 containers of cotton candy…. original and peach.   Original is what I got last time, and it is just what it claims to be, cotton candy.   The Peach stuff has a weird taste to it, but a peachy after-taste.   It’s odd, but I don’t think it’s bad, Teresa hated it.  Oh well, didn’t buy it for her now did we?


My backside hurts.  I refuse to take any painkillers for it.  I use icepacks to deal with the pain.   It’ll ache for a few days.  They always do.


OK, here’s the deal.  I will just die on the spot if any of these tests come back anything but good.  I want out of here so bad I can feel it.  I am not sure if the biopsy will even be done being evaluated by Friday afternoon, usually it take 3 full days.  But anyhow, I am fairly certain that nothing bad is going to reported on any of these tests.  A little concern about the bone density, chemo+high done prednisone, sometimes the bones can’t take it like they used to.   It probably wouldn’t make me stay here longer, just probably add calcium or some such to the mix.  —  There damn well better not be any blasts showing on my bone marrow biopsy.  — x-ray was clear.  —- and I rocked the Pulmonary test.  So it should be a no brainer.


Here’s to holding out hope that Friday’s blood test comes out goodly.  That is the last key to us getting out of here.  Even if they aren’t perfect that shouldn’t hold things up.  Everything can be fixed pill wise remotely.  So I am actually not that concerned about the blood test after all.


I can’t wait to get home.


The Day is +89

I am ready to go home.   Everything is pointing to me getting to go home this Friday and not have to wait until the end of next week.   I have all the “End of the long wait” tests scheduled on Wednesday.  Including yet another Bone Marrow Biopsy.  It’s all good, have these tests, they all are going to come back normal or close enough, and Doc is going to say, I get to go home.   We get to go home.   Yeah, it’s just a week early, and I have to be back in 2 weeks, but early is early and it earmarks a good recovery.


I am not getting the “bump” chemo at all while I am up here, we just ran out of time.   The problem is, when I contacted Dr. Wehbe about doing the chemo, he told me that none of his nurses are certified in use of the Hickman Catheter.   Which means, in order for them to give me the chemo, they would have to give it to me as shots in the stomach.  Ugh.  I don’t want shots in the stomach, the bruising is something terrible, and the shot itself doesn’t feel good.  Dr. Wehbe is very on board on doing the chemo, just can’t do it through the Hickman, and that SUCKS.


Packing is going to suck.   We were packed to the gills coming down, and we have added stuff.  At least we don’t have to worry about the dog stuff or the dogs.  But it’s still going to be tight.  We can make everything fit, we always do, but since I can’t life heavy objects (still weak from all this, working on getting stronger),  Teresa is going to have a heck of a time packing it all in our small car.


I’m going to sleep without coughing.  Laying down flat on my side, I don’t cough.   It’s an Advair miracle.  I can sleep, wake up to use the restroom come back, lay back down and not a cough to be heard.  It’s wonderful. ——  However, the same can’t be said for lounging back on the bed or in the chair.  I cough and cough.  I sit up straight and it stops.  Weird, weird I say.   Some day soon I will be able to lounge, but right now, it has a  coughing cost.


As I mentioned earlier, I am going to have to come back up here for 1 day every 2 weeks.  At least at first.   Those appointments will spread out more as time goes by without any moderate to serious issues.  Eventually it will get to 1 day out of a year.   I can definitely handle that.  But for the immediate future, it’s every 2 weeks.   If they schedule it right, we can drive up in the morning and then drive back in the evening.   Thereby causing Teresa to only FMLA 1 day of work.  Plus I don’t want to have to check in the Gift of Life Transplant House every 2 weeks.  That would get annoying.


In 2 weeks, regardless of if I get out this Friday or next Friday, we will have our dogs back.  One of the hardest parts about this stay is having been without Pucky and Mojo.  We need to get our family back together in our own home.  It’s time to get our family back together in our own home.


The Mayo Store has a woeful selection of new masks when Teresa went to get me one.  She mentioned this to the clerk who responded that they have been waiting for a shipment and there was nothing they could do.  So Teresa bought me the mostly Reddish one which only has a little pink, instead of the mostly pink one which had a little Red.  Heh, it’s just a mask.  I am secure enough in myself to wear something with pink in it.  It’s all good.


CPAP’s new programming is working great.  I sleep through the night and rarely nap now.   Weird.  Makes days seem much longer.  When I started the CPAP back a few years ago, I hated it.  It was uncomfortable and made me choke at night.   Now it’s uncomfortable and helps me sleep the sleep I should have been getting all along.  Thank you Mayo Clinic’s Sleep Study people, you made my sleeping life much better.


The psychiatrist they assigned me to when I got here was totally useless.   She missed our first appointment entirely.   Was 45 minutes late for another appointment.   And forgot to schedule another appointment.   The 2 times I talked to her, she asked the appropriate questions but offered nothing in return.   Bah, I don’t need a shrink except to prescribe me mental medications.  Don’t need talk therapy, don’t need anything from them except the meds.


For the record, I feel pretty good right now.  Still mostly weak as a kitten, but working on that.  The rash is finally GONE.  We hope for good this time.   I have no other signs of GvHD.  So, I may have scooted through this without any major issues (except the lung infections, but those weren’t GvHD, those were people coughing and/or sneezing around me when I had no defenses).   I’m happy and healthy, what more can a man ask for.


6 months from now I will be starting my baby shots.  Must get all the shots over again cuz my immunizations have been wiped clean with my bone marrow.   Which by the way is 100% German now.  So I have to get a whole new set of immunizations.  Which is fine by me.


I missed the Adel Sweet Corn Festival.   Kind of bummed about that.  But hopefully Jay got me a shirt, Teresa asked him to and sent him money for it.   The shirt is STUPID this year, but I collect the shirts so, I must have one.


Going to miss the 30th High School Reunion.   Going to miss everything to do with Halloween.  Going to miss Thanksgivingfest and Thanksgiving (cats).  Probably going to miss anything to deal with Christmas.  I don’t know when I will be allowed to be around cats again, so I probably won’t be going to my mom’s for her birthday.  February I will get my first round of baby shots, and then I may venture out into the world more.  But I still won’t have a ton of energy to do much venturing.  Yeah, 2018 will have been a year which was not fun for me.  Age 47 was pretty much not fun either.  48 isn’t looking too great right now either, as I have 5 months or chemo in my future.  Bleh.


Well, anyhow, I have whined enough.  So, some music perhaps…..


Yeah, I like the Cure too.

Day +85, 2 weeks to go.

I would say I am excited, but I have the strange feeling that Dr. Alkhateeb is going to make us stay longer.  Just a hunch.  But let us assume he is not, 2 weeks is not a long time at all.  We will get home, we will get our dogs back, we will begin living life again (sort of).  The chemo I have to take is 5 days long, and will happen 1 time a month for each of those 5 months. So, I should be done for Christmas.   I will feel like Hell most of those 5 months, I will be getting blood and platelets on a semi-regular basis.  I still don’t think this “bump” chemo is necessary, but everyone else is on board, so I have little to no say in the matter.   Anyhow,  I should be feeling good January/February time, until then, I will fake it.


The rash is gone (again, finally), now all I got is shuffing skin.  That is dead skin peeling off from everywhere I had the rash.  My back,  my chest, my shoulders, my FACE.  The rash didn’t itch, but the shuffing itches like mad and every time I scratch I got a handful of dead skin.  But the point here, really should be, the rash appears to have run it’s course, and so ends GvHD at this point.   This is a good thing.


Oh yeah, I woke several times last night.  Nothing new there.  What was new was falling back to sleep without coughing.   Seriously, 1 cough is all I recall for the whole night.  Teresa slept better, I was able to get to sleep better.  Don’t misunderstand me, I still cough a lot during the evening, but when I laid down to go to sleep I was silent.  WOOT.


I have not watched TV except a little tiny bit of HGTV and FOOD NETWORK for 85 days.  I have no clue what is going on in the world.   Only news I get is thru Facebook and we all know that most of the news that comes thru there is biased one way or the other.  I thought it would drive me crazy not having TV, but it hasn’t been too bad.   I am definitely looking forward to going home and watching out big screen at the foot of the bed.  I WILL get back into watching the Channel 8 news and CBS or NBC Nightly news.  Guess I have a need to be informed that I have been squelching.  Won’t have to squelch it any longer, starting in 2 weeks (hopefully).


Teresa figured out that if I get the chemo next week, my blood numbers will fall about the time we are going home.   That sucks.  That sucks in a major way.   But that is how it looks like this is going to be going down.   I just hope I am not super sick on my way HOME.  I wouldn’t want to do that to Teresa.  As it is she is going to end up having to cart everything into the house, cuz I am still very weak, and more chemo is just going to make me weaker.  Bleh.


I started working out on a Total Body Recumbent Stepper.  The Gift of Life Transplant House has a most unused workout room in the basement.   So Teresa rides the stationary bike, and I do arms and legs with the stepper.  Right now, I can only do 10 minutes and it’s difficult at times.  But I am doing it.  Trying to get some of the muscle back that chemo and prednisone took away.  2 more weeks of that.  Nothing (but maybe feeling sick) says I can’t work out on chemo days.  I am going to try to convince Teresa to buy me a stepper, but money is what money is and a good quality stepper is 650 bucks.   The other side of the argument is, I kind of need it.  I believe it’s the machine which holds the fast track to getting back into “shape” (like I ever was), well get some muscle back at least.


Oh, I forgot to mention this, I finally beat Civ 4 Warlords on Conquest mode without using Nukes.  I got the worse rating, took me until year 2150 or so, took about 12 hours of real time, but I finally did it.  I even know what I did wrong, what took me so long.  Just having problems implementing the solution.  And I use Augustus Cesar as my leader, he gets Praetorians as his special unit.   They rock at love level.  But are slow will movement speed of 1.   Well, when you are on a HUGE landmass.  Getting from the point of creation of the Praetorian to where the battle is taking place can take 35-40 turns depending on where the city is.  And 35-40 turns sounds like a long time cuz it is a long time.


My birthday I got gifts, the day after my birthday I got my cake, and the day after that I got my birthday dinner.   Heh, 3 days to celebrate a birthday, I must’ve done something right.


It’s almost time to head out to see the doc, so I better wrap this up…….


Day +81, also know as my Birthday

Yup, I survived another year (was in serious question at several points this yes) and am turning 48.  I won’t say it was a good year, spent entirely too much time up here in Rochester and missing out chihuahuas.   Finding out I had to do all this crap in January and not finishing until December just plain sucks.  For those of you who don’t know who read this, I have 5 more rounds of chemo to go, but at least I get to do most of them from home.  So nertz to my 47th year and nertz to what is going to happen in my 48th year.   Yeah, I am being a downer about this, cuz this all sucked.


It’s day +81, which means 19 days until 100.  Now I am hoping to get out at 99 cuz that is a Friday.  Please don’t let him decide to keep us until Monday, that would be sucky too.  I can hardly believe that we have been at the Gift of Life Transplant House for so long… it’s a nice place to visit but I wouldn’t want to stay here this long again.  Oy.  19 days doesn’t seem that long.  But during those 19 days, I have my first round of the new chemo “bump” and yet another bone marrow biopsy (just to be sure).


Now on to my Birthday…………..  I got a new IWatch 3rd edition, it’s space gray with a black band and it’s cool.  I got 2 new T-shirts, one saying how I survived cuz of a donor and the other being a Gift of Life T-shirt.  And finally, I got a mask that fits.  Teresa had to search all the way to Germany to find an extra large mask that met the guidelines set forth by the hospital.   Wasn’t cheap, but has replaceable filters so I shouldn’t have to replace the whole mask.  And since I am going to have to wear a stupid mask until January or February, it’s nice to have one that actually fits.  My mom also bought me a new jean jacket and an amazon gift card.  My brother got me a board game (which I was gonna debut at Thanksgivingfest, but that’s not going to happen) and a When the GM Smiles It’s Already too Late T=shirt.  So yes, clothes horse me added 3 new t-shirts this birthday.


Ignoring the health issues, I am ambivalent about turning 48.  With the exception of the cake Teresa is picking up at noon, it’s just another boring day here at the Gift of Life House.  Age 48 is another one of those nothing ages.   No one really cares about you being 48, and won’t care again until you turn 50.  Then your age becomes a big deal again.  I got 2 years to go.  Woopie Ding.


In case you can’t tell, I am a bit on the depressed side.  I was handling things fine until last Friday when my mood plummeted.  Among everything, I really don’t want to do this chemo coming up.  Dr Alkhateeb is going to discuss it with us on Friday when we see him. Yipee.  There is just a lot of crap going on, and it all is hitting me.  Makes for a depressing outlook on life, especially for a bipolar.


I wrote Facebook about this no auto-posting, and they basically said tough.  I still think it was a stupid decision, but heh, Facebook has made lots of stupid decisions since it’s inception and it is still going strong.


Yesterday I didn’t do any of my nebulizers until the one right before bed.  I felt so good physically and was hardly coughing…  I paid for that last evening and night.  Inhaler, nebulizer, and breathed in steroids.   Must do all 3 to feel better.  Lesson learned that hard way.


Teresa is taking her car into the shop today.  Hopefully it’s an easy fix and we aren’t carless for long.  But one way or the other it needs fixing, especially since we are heading home soon.  I don’t know crap about cards, but it started with the sounds of rubbing and now, according to Teresa, sounds like the passenger side back end is coming off.  She found a reputable repair place here in Rochester, so that’s where it’s going to go.


My rash is almost completely gone, just a few hold out spots.  The acetone cream really does it’s job well.  Other than that, I am currently GvHD free.  I forget how long we have to worry about the acute GvHD and start to worry about the chronic GvHD.   Anyway it happens, Teresa and I will handle it.


Let there be music….


I think it’s Day +79

It is August 4th, 2 days before my birthday.  For the first time in many years I have no clue what Teresa got me besides the big gift, and she hasn’t even let out a hint.  Normally, I am not a surprises kind of guy, but a good surprise is something I kinda need right now.  So, while the rest of the world is recognizing Adam Martin and Stephanie Lowe’s birthday’s today.  I am getting ready for my birthday on the 6th, well mentally.  There isn’t a whole lot physically I can do to prepare.   The cake was ordered a week or so ago, Teresa took care of that…  Vanilla with a raspberry filling.  Oh so yummy.  Teresa was going to make me an ice cream cake, but she doesn’t know how to make a white cake.  She is a great cook, not so much a baker.  Anyhow Daubie’s bakery is the place to get cakes from in Rochester, and that is what we are going to do.  And we have plans to not share it with anyone in the House.  <insert evil laugh>.


The cough is FINALLY getting better.  Only about 10-15 minutes of coughing before falling asleep.  Random coughing now and then during the day, still worsening in the evening.  But even at its worst it’s no where near as bad as it was.  It seems that adding the Advair really helped a lot.  I have been on it for 8 days and can see a marked improvement.   Right now, I am lounging in bed, NOT coughing very much.  Something I couldn’t do the day before yesterday.    So, WOOT, I am on the mend.   When the Nurse Practioner listened to my chest on Thursday, I was clear.  Shocked the heck out of both of us.  Too bad nighttime doesn’t follow daytime when it comes to this cold.   It’s all good though, it should be almost over.


I think I am on day +79 which means 3 weeks until we are out of here.   I know 90% of my meds, which Dr Alkahteeb said I had to know before he would release me.  No sweat on getting the last 10%, I will have them this week.  It’s going to feel weird going home.  110 days is a long time to be away.   But it’s all good, with my brother and mother bringing our dogs to us on that Tuesday I believe, the dogs should be as happy to see us and we will be to see them.  They are what we have missed the most about not being home.  Followed by our kitchen and then our toilet.   Teresa doesn’t not like cooking in the communal kitchen, but prefers to cook on her own in her own kitchen.  And as for the toilet, doesn’t everyone prefer their own throne?


I guess Teresa isn’t going to the farmer’s market this week.  She is sleeping in.  I don’t blame her, my coughing is keeping both of us awake.  And since I am awake now and not coughing much, she is making up for lost sleep.  It’s not like we  needed anything from the farmer’s market, Teresa got a lot of good vegetables last week.


Our car, the one we drove up here, is having problem.  Making god awful noise that started as a rubbing sound in the back, but Teresa describes it now as a horrible sound that sounds like the “suspension is going to fall out”.  So, we are going to have to find a reputable mechanic up here (probably the local dodge dealer) and have them take a look.  We don’t have lots of money, but should be able to afford to fix our car.  I wouldn’t want in dying on the way back.   And what truly sucks is that the warranty just ran out on the car.  Oh well, it’s just money, right?


Facebook is being stupid, they are not allowing my WordPress post to automatically post to Facebook anymore.   I will be posting the url to this blog entry on my Facebook feed and anyone who wants to read it will have to click the link and hopefully it will work.  I sent a rather wordy message to Facebook asking them to change their minds.  I don’t think it’s going to work.  Oh well, the people who want to read my blog will find their way here I am sure.


I think I start my last chemo sessions not next week but the week after.  Dr A is running out of time.  The chemo is going to happen 5 times over 5 months for 5 days.  But it is all done out patient, so I do not have to worry about staying at the hospital.   Dr A wants to get the first round in while I am here.  Just in case I have some weird reaction.  Solid plan, if you ask me.  I still don’t want these last chemo’s, but have resigned myself to getting them.  Besides, Dr A is going to let Dr Wehbe administer most of this chemo in Des Moines.  Where I get to go home between injections.  Oh yeah, they are gonna inject into my port so I don’t have to have stomach shots.  WOOT.


I have had good days and bad days.  Well, mostly bad evenings which followed a good day.  Has made it tricky on dinner plans.  If we don’t eat early, I often feel too unwell to eat.  At least this has been the case until now.  But things are getting better, and I may be as weak as a kitten, I plan to start using the exercise machine room next week (after my birthday).  Short bursts but lots of them, yep, that is what was recommended to me by 2 different nurses.  I need to build my strength up a bit before I go home.  Right now I can’t even pour a gallon bottle of water.  pathetic.  Chemo followed by Prednisone did me in good.


<YAWN> I think I am heading for a nap.  As mentioned before, I haven’t been sleeping good….  better with the new cpap programming, but still having issues.  So, an early nap might very well be in  order.


Day +74

The ever present cough is still making my sleeping life miserable.   And my propped up in bed life too.  As I said back a few days ago, Dr Scott the lung doc said it could take 2 months for this cough to go away.   That sucks.  At least its better than it was.   Let me take a moment to  spout the joys of Advair.  Yeah, it’s an inhaled steroid.  Yeah, you have to gargle after you use it and brush your teeth to get the steroid out of your mouth.  But let me tell you, as I type this propped up in bed.   Advair is making the cough livable, much to my surprise.


It’s day 74, by my best recollection.  Today  being Monday, I would normally be going to see Dr Alkateeb or one of the many nurse practitioners who fill his place on a semi regular basis.  Lucky for me, he cut my visits down to once a week and that day is on Thursday.   So today consisted on me getting up, going downstairs for a blood draw and then coming back upstairs, playing some CIV4 Warlords, then taking a nap.  Yup, if it wasn’t for the blood draw, today would be another boring day here at the Gift of Life Transplant House (which is what almost every other day is).


Teresa made lasagna on Sunday.  Not just any lasagna.  The 5 hour World’s Greatest Lasagna.  Yup, she spent 5 hours in the hot kitchen making lasagna for me.  Then after we had ours and saved some for lunches, she put the rest up for food donation to our housemates.  Last we checked, there was 1 piece left, and we reckon that is from the fact the he/she who has the last piece has to do the dish.  And man does lasagna make a messy dish.  Teresa hypothesized that no one will eat the last piece because no one wants to hand wash the dish that it was cooked in.  Anyhow, it was really good lasagna, the only problem I had was the sausage we are used to using back home has a zing to it and the sausage here didn’t.  So it was missing the kicker.  But beyond that it was yummy.  And the dozen of so other housemates gave it their seal of approval.  Yeah, my wife loves me, she does nice things for me.  I love her more of course, but don’t have the energy to do much about it.


Teresa also went to the Farmer’s Market on Saturday.  She got up at 10am on the weekend to do it.   So she must have really wanted to go.  She got Radishes, Cucumbers, and Tomatoes that taste phenomenal.  She said it was fun.   I would have went, but as per usual, I felt like crap when there was something fun to do.


I don’t think I mentioned these before, but I have the shakes.  My hands shake cuz of the anti-rejection med.  Side effect : Shaky Hands.  So bad that the only game on the computer that I can play is Civ4.  And at night, that is even iffy.  Can’t click anything exact in any other game cuz I shake the mouse too much.  So, I am getting a lot of Civ4 Warlords in (big clickable areas).   Still haven’t beaten it on Conquest without nukes (haven’t beaten it on Conquest with nukes), I get bored or I make a stupid mistake and end up starting over.   One day I will beat it.  Just maybe not today or tomorrow, but some day.


The rash is virtually gone.  A few small spots left.  I am shuffing skin like mad.  Off with the bad skin, leaving nice skin in it’s place.  The rash doesn’t itch, the shuffing does.   So I find myself unconsciously scratching places that used to have the rash on my body.   Luckily I did not get the rash anywhere below the belt.  Mostly my back go hit, my shoulders, my head, and the back of my hands (my knuckles, go figure).   A baldish head shuffing is and ugly site.  So Teresa bought me a hat.  Extra big to fit my big head.  With hat on, and mask in place, I don’t feel so self conscious about going out in public.  Yeah, I still look like a cancer patient, but at least the nasty shuffing is hidden away for the most part.


Teresa likes it cold in the room.  I have problems with heat/cold regulation do to the leukemia.  She runs the chiller and I end up putting on a sweatshirt to keep from freezing to death.  We are still working on finding a happy medium.


26 days to go.  Hopefully only 24, and not 27.  The 26th of August falls on a Sunday.  Dr Alkhateeb doesn’t work on Sundays.   He has to let me fly on a (hopefully) Friday, or make me wait til (booooooo) Monday.  I am still weak.   I still have a tiny bit of the rash.  But my numbers all look good now.  Dr A is a good doctor with sometimes horrible communication skills.  He is being really thorough.  He found out that I was woefully low on Vitamin C.  We are talking scurvy numbers, you know like pirates used to get.  But no, I didn’t have scurvy… yet.


They did another chimera test, and once again I was 100% in control by the German cells.   Sweet.  Now we just have to beat them into submission cuz they seem to have a mind of their own.  Thus the chemo “bump” I will be getting.  Make me feel crappy again, but should be worth it.   Will have to make a lot of trips back up here.  Hopefully we can schedule them for day trips so we don’t have to stay in the Gift of Life Transplant House.  Not that it has been horrible here, just we have a limited amount of money that insurance will cover and I don’t want to waste it on trips we can make it one day instead of 2.


So, a blast from the past.  Thinking about Teresa.  I didn’t get to listen to it before posting, so hoping the quality is ok.

Thoughts on Day +70

Today is Day +70, the day I should have been going home.   The day I dreamed about going home.  It was an eventful day and I am gonna bore you with some of the details.  But the big take home of this day is, I am stuck here for at least another 30 days, and I think how long I end up staying is by total whim of a very large Doctor.  Dr. A, pretty much alone gets to decide if I am going to be released on time or have to stay cuz of the GvHD rash and the stupid fricking cough.


Day started out as they are apt to do on doctor visit days, blood draw.  Yep, twice a  week for now which seems like a year or more, I have been getting blood drawn downstairs here at the Gift of Life Transplant House.  As a courtesy to patients here, Mayo sends a nurse and a lab tech every weekday morning to draw blood.  Saves us at least 1 trip to the hospital.  The only catch is they do it between 7 and 8am, so no sleeping in on blood draw days.

Sidebar:  Everything they are testing for looks groovy (today at least).   So nothing to complain about from today.

On days I haven’t posted…  I am short of copper (so I am taking copper pills).  I am short on Folic Acid (so I am taking a Folic Acid pill) and finally my Vitamin C was almost nonexistent (so I am chewing Vitamin C chewables every day for the foreseeable future.  More pills.


A couple hours later, I went for a Pulmonary Fitness Test.  Yes, I still have the cough.  Yes, that made things awkward at times.   But thanks to the nice nurse running the test and not high expectations I got thru it.  I actually didn’t do nearly as bad as I expected to do (which I found out later).  The stair step routine nearly killed me though, stairs and my cough do not get along.


A couple hours later I met Dr. Scott, the pulmonologist (actually he is a lung transplant guru, playing the role of pulmonologist).  He, Teresa and I talked a long while about my asthma.  Turns out that even though I am not asthmatic anymore, asthma still plays a big role in my sicknesses.  Whenever I get sick it goes to my chest.  So, anyhow, he gave me a steroid inhaler (Advair) which should, eventually, help my cough.  He did however also say that it might take 2 months for the cough to go away (ugh).  He was the one who informed me that I did fairly well on the Pulmonary Test, setting a pretty high bar for any future tests, which he suggested we do monthly for the next 12 to 18 months (ugh).  But he did it was such niceness and his cool accent, it didn’t sound bad when he said it.


An hour later, we met with Callena the nurse.  Since everything was going ok today blood wise, and I felt pretty good, her visit just gets a blurb on my blog.


Then we met with Dr. Alkhateeb.  I had been really pissed at him, almost to the point of asking for a new doctor mad.  I really didn’t want to do the Pulmonary Test, but Dr. Scott calmed me down so by the time we met with Dr A, I was mellow and happy.  Dr gave me an ultimatum though, I have to learn the name and what the medicine does for every medicine I am on.  That’s a lot of meds.  He said he won’t release me (even at 100 days) if I don’t know them.  Since, I have been relying on Teresa’s phone app and Teresa doling out my pills, I haven’t bothered.  I know the names of my new pills, I just don’t know which is which.  Should be no problem.  Also today, he moved me down to one visit a week if Teresa and I don’t think I need to see him more often.  WOOT.  I hope he chooses Thursday.  But right now, the app is blank for when I see him next.  But they screwed up my blood test location again, so I have to call them tomorrow and move it to the Gift of Life House.  Blood Test on Monday, Blood Test and see him on Thursday, works well for me.


Between all this, we discovered that room 50 sprung a leak.   A pretty bad leak at that.  That prompted the Gift of Life people to move us to room 64.   Which is a serious room downgrade, just saying.  So, I moved a few items, and Teresa has done all the brute labor moving.   She would not let me do much more that I did, which I am ok with as I have little to no energy after my eventful day.


Tomorrow I go stick my head into a box and breathe anti-pneumonia goodness.  I did it about a month ago (hey, I got sick about a month ago, coincidence? probably) and they want me to do it again.  That’s fine, 10 minutes or so in the box and its all done.   And I shouldn’t get a certain type of pneumonia.  My one partial immunity at this stage of my life.


So, day +70 came and is going to went, and all I can say is it was quite a day.  And I am glad it’s over.  Now I got 30 days, August 26, then I should be out of here.  Well, actually the 26th falls on a weekend, so it’ll be either a day or two before 100 or a day or two after 100.  So falls the days doctor’s work.  It’s all good, I will not go crazy here.  I have gone this far, what is one more month?


Here’s WatchMojo’s list of the greatest rock bands of all time.   Agree or not.  I just wanted to end on something musical.