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.

Author: Jeff Campbell

I am 50 year old guy, who beat blood cancer but is getting his butt kicked by bone marrow cancer. At this point it appears I am dying. Married and in love with the most wonderful woman in the world (27 years). She has stood by me thru a lot of crap and I love her so.

One thought on “The Day is +89”

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