Today is Thursday, July 31st

I don't know how to thank you all for your love and support... except to say thank you so very much!!!  Today was filled with conflicting emotions... apprehension, fear, love and gratitude.  I'm very nervous about what the days ahead hold for our T.  The news today was that T's numbers were going down and that it had been determined by the ultrasound that T has cirrhosis in his liver.  I wasn't expecting that, wasn't prepared and taken by surprise that the biopsy was cancelled.

Carla & Gary suited up and joined T & I to wait for the biopsy... Gar was making us laugh when we were joined by the transplant team... they proceeded to say T's liver was cirrhotic and I asked if it was reparable... I got 1 yes and eyes that were unsure....  I was so stunned about the cancellation... dumbfounded...  tomorrow I'll seek more clarity...

Please keep the prayers coming... we need to figure out what comes next...

Today is Wednesday, July 30th

Happy Birthday my sister, Sharon!!!  I thank God for you in our lives... our family would not have survived all of the trauma without you...  I hope you take some time to enjoy your day!!

OK...very long day.. I've lost interest in everything other than my quest for answers... I finally spoke to the transplant team today.  I questioned everything and everyone and then, asked to speak to the attending outside T's presence.  I asked the hard ? What are we facing?  The worst would be renal failure... the best:  temporary issues with the kidneys and liver (since they work together)  exacerbated by all the chemo.  That's why we need your prayers, white healing light and positive thinking to get through this.  Tomorrow is the day for the liver biopsy...

I fell apart today before I hit T's space early this morning.  Then, seeing my man have so much courage in the face of all of this after all he's been through... I had no choice but to rally.  I AM THE ADVOCATE!!!   I am T's WARRIOR!!!  I promise all that I am and I will hold the powers to be to be their best...and your friendship and support to get us through...

Today is Tuesday, July 29th

Spent the entire day with our T except when they took him away for an ultrasound of his stomach and neck veins... OK I'm not the only one who's worried.  I just missed the transplant team this morning but we were visited by liver specialists and kidney specialists... all trying to figure out why he's so engorged....

Got him up and bathed first thing this morning and started reading the third part of Reversal.... visited with his wonderful nurse, Maureen- who gave T his shamrock mask covers so many years ago... Maureen is retiring on Fri.... we're gonna miss her.

So, the latest T will have a liver biopsy asap... but that's probably gonna be Thurs.  Because of T's fragile condition, they will enter thru a neck vein and go down to the liver to obtain tissue... this apparently, is the least invasive and has the least threat of infection.  I cross examined the doctor who came into explain the procedure... turns out he's not performing the procedure and I'm glad cause he's only done 10-20.  We want the Varsity team.  When the 3 specialists entered the room; I suggested that the liver doctor should probably put on some gloves and T smiled and said "you don't let anyone get away with anything, do you?" my reply " I'm a mama bear when it comes to you"...  when all 3 doctors left to confer after they'd examined T and cross-examined him;  I asked T if he thought it was a prerequisite for kidney doctors to be well over 6' tall... cause they were...

I'm sorry that they couldn't do the biopsy immediately... the OR is booked solid and T has to have blood and platelets prior to the procedure.  I'll have to keep us occupied until Thurs... looking for the next Connelly - Harry Bosch book...

Thank you all for your prayers and white light streaming... we need it!!!

Today is Monday, July 28th

Today was a tough one.  I spent the day showing homes in Rio Del Mar and Seascape to 2 different clients and finally got to Stanford about 4:00.  I wasn't pleased with the way T looked.  He's got peticcia?sp. around his eyes and he's very logy due to all the water weight he's carrying.   In my opinion, he's been slowly going downhill since Friday.  He's maintaining a good attitude and he's a little more alert - he's loving the Michael Donnelly book that I've been reading to him and he's now trying to cast Harry Bosch... but he's now severely neutrapenic and very edemic.  He's trying to maintain a good attitude but he's basically zoning out most of the time.   We were walking Fri. & Sat. Sun. I was helping him swing his legs off the bed so he could get up and today he's not even doing that.

I'm very worried.  I asked to see the doctor and physician asst. came by about 6:00.  She explained that T was now manufacturing the 2nd round of cells since the transplant and was experiencing a low point - not unexpected but indeed serious.  They had introduced albumin today to try and help the water retention and help the liver and kidneys.  The protein would help the liver and kidneys to process the intake and not allow so much water to escape and flood his system.  T received his 2nd Neupogen shot tonight.  Yesterday's did nothing.

Please, we need your prayers and that white healing streaming light to surround our Tracy.  He needs all the help he can get right now.

I'll go to the hospital early tomorrow.  I need to speak with the transplant team.  I'm needing more reassurance and lots more info.  I'll update as soon as I have more info.

Thank you for your love and support... it will get us through this...

#3

OK OK OK  Jayne just sent 3 pics from my b'day dinner with Jayne, Deb, Gar, Deanna & Gary

All quiet on the western front

Today au Deux

How could I forget?  Yesterday T was given the ok to start diluted liquids- 500cc daily-  means he sips 200cc of Ensure Clear with equal amount of water at a time - he savors the taste and sips very slowly.

Road to health is littered with lots of fumbles... but he's still climbing the path...

Today is Saturday, July 26th

Life keeps rolling along. I'm debating whether I can make 6.3 mi. & do the Wharf to Wharf tomorrow. Haven't been walking even close to that since I moved to PA. Sometimes I feel like I've moved to outer space. I miss having a regular routine, and seeing folks. Everything feels out of order.  I think I've become a control freak because I can't control anything.  I'd like something to settle out.   I'd like Tracy to come home.   

Bought a parking pass yesterday... make it easier to break up the day - in & out privileges and don't have to constantly search for cash... 4-5 hours at a time in the hospital is hard... altho' yesterday T & I walked twice; in addition his aide walked him before I got there.  I'm reading Jim's copy of Michael Connelly's "The Reversal" to T.  I read it already and knew T would love it.  

T just called new room #FGround 077A - 650.498.3037 - we're casting the characters for the movie - T said the bad guy, Jason Jessup, should be played by Robert Duvall... T's imagination is engaged... ha!  poor guy has been bored stiff... he watched the Giants lose to the Dodgers last night... 

OK... short but sweet... I'm looking forward... 

Today is Tuesday, July 22nd

Wow!!  Bought some sushi, Zero Vanilla Coke & Meyer's rum along with Clorox wipes on my way home from spending the day with T.  When did Ca. get so muggy?  I sought refreshment and now at 12:15  realize there was caffeine in that Coke... only had 1 rum & coke guess it was the 2 cans of coke... as T says when he sips his cranberry juice "soo refreshing!"

So let's back up to last Thurs. morning... T was set for at least 2 weeks... checked Facebook & the twins were gonna meet at the pool down in Paso... phoned Deb & Gar... leaving in a couple hours... I'd forgotten all about the Paso weekend but the ? was could I do it?  Alan said he'd take Riley, T said "GO", cancelled my eye doctor apt., threw stuff in a bag, grabbed Riley's food, flinger, dishes & treats and rode over the hill.  I'd forgotten Riley's bed so, went to get a bed for the boy and we were off....

Just what the doctor ordered!!!  ESCAPE!!!  I missed my T but I took a few days to just relax, be entertained... dip in the pool and salsa dance to Desayuno...  saw Elvin Bishop, the Fab Four, horse cutting, sheep busting, dog show...  Jeff hosted a Magic bus ride for wine tasting at the Rockin' R and we all had a blast!!! Carla, Jayne, Lou, Deb, Gar, Di, Mike, Terri and Mark... the usual Paso suspects...
Kept checking in with T and he was in pain on Sat... coaxed him into talking to the Docs and they figured it out.... change in meds...

I'm baaack.... washed everything in sight including Riley... tomorrow the car...

T is in total isolation... he's very lonely... had to gown up, gloves, mask... our guy has C-Diff & not sure about GVH too... hopefully, I'll see a doc tomorrow... T's very calm... I'm wired for sound... he's got his advocate back and we hugged long & hard... I bathed him and got him to walk around the wards... he was glad that his PT saw him moving....he massaged my aching neck as we waited for his room to be cleaned... which I insisted on even tho' the housekeeper said she'd already cleaned it... yah I'm not loopy...

Carla cover girl

Elvin Bishop

Juicy Jayne 

She stole Riley 

Today is Wednesday, July 16th

What a difference a day makes...  neither of us are sleeping cause T is having stomach etc. problems.
Today we finally got the colonoscopy and endoscopy biopsy results:   Graft vs. Host infection throughout his intestine, duodenum and colon... poor guy finally knows why his stomach is so distended and he can't seem to eat anything without resultant issues.  So the cure?  Leave his intestines alone long enough to heal... Tracy and I were in the ITA from 10:30 until I left at 4:30 awaiting his admittance to E1 again.  Just spoke to him and he's still waiting for a room but they're feeding him intravenously and he's pretty calm.

I kept wondering what we could do to relieve his discomfort.  He was feeling so blessed that he invited R & his caregiver over for dinner Fri. night.  They were right next to us in the ITA and they heard the conversation with the doctors as they said he needed to be admitted... as I cried, R came over and bumped fists with T and kissed me... told us not to worry... just a little speed bump in the grand scheme of things....  T needs the rest, constant monitoring and IV feeding...  I need a good night's sleep.

Riley is right beside me as I write and he's happy that I took him for a walk before I started the laundry... and fed him lots of treats...  at least T is close...

Today is Tuesday, July 15th

Life is all consuming at times... like right now.

I thank God we've turned a corner and T keeps creeping back to health...

T met another transplant patient today and his story blew our minds.  R is on his 2nd transplant cause the first did nothing.   He had to wait a long time for the 2nd donation and it is a 9-10 match from Germany.  His caregiver came in from Kansas and he's from Sacramento.  He's doing his best and it was a wake up call for us.   Not everybody has a perfect match.  Not everyone reaps life....

The last week has been Hell for us... T had a very hard time prepping for his colonoscopy and endoscopy and then, he tried to recover.  The issue was whether he had an infection due to rejection. The biopsy results are negative but T lost a little ground in the interim.  T is down to 204 lbs and I'm bound and determined to fatten him up.  His numbers were good today after a blood transfusion on Sat. and lots of TLC.  

I thank you my friends and family for all your loving support.... we wouldn't be here without you......Exhaustion has become a constant but we're getting the better of it.  We're determined.

And along the way, my business has picked up.....  who said there's no rest for the weary?

Today is Wednesday, July 9th

We've had quite a few very long days...  T's come alive with the addition of prednisone... he's eating again... and he's awake and aware and it's amazing what a steroid will do...  unfortunately, it's not a miracle drug and T can't stay on it forever... no one can.  The docs are playing with all his meds to regulate the immunosuppressant with the antifungals and antivirals and liver protectors and on and on... it's a day to day thing and we're on a Mon - Wed - Fri thing with an additional day this Sat. cause T is having a colonoscopy and endoscopy on Fri to figure out what's going on with his stomach etc.... Our T is back but he's losing weight and we're not liking that...

So I ended up at PAMF Urgent Care on Sun.  Kept thinking my eye would heal but it just kept getting worse... turns out it was a sty on the inside of the corner of my eye... and it just kept growing and irritating my eye socket etc....  antibiotic shot in the ass and a course of heavy duty antibiotics and my eye is looking much better.  The Doc wanted to know why I hadn't been to a Dr. since last Oct.  Silly ?
Don't ya think?

Anyway, today after a terribly long day yesterday... showed Maciel listing and showed several condos and checked out several homes for clients... back to grocery shopping, CVS for meds and then, making dinner and washing clothes and bathing and then, collapsing... I was quite under the weather...

I took it easy this afternoon after ITA and T made dinner tonite... wow!!  then, we watched the Giants finally beat the A's... Yahoo!

Tomorrow is a new day!!!

Today is the 4th of July

Wow! What a week!!!   Sorry it's been hard to keep up...

We're on a Mon, Wed,  Fri schedule in the ITA and it's been a very long week...

As of today, it's been pretty routine.  But then, my guilt over leaving T on Tues. for 3 hours and Thurs. for 6.5 made me crazy...  somebody's gotta make the donuts and T really wants his independence.. poor guy hasn't had any alone time in months.  But today my guilt kicked in.  Yes, I called way too many times yesterday and T was probably sleeping but I needed to hear his low throaty "Hi my love"  to assuage my fears...  He wants the alone time,,, he probably craves the alone time... he's the guy who would rather stay home than anything else... so, if you're asking why I didn't ask for help that's why...

I spent Tues. and Thurs. working...showing my listing on Maciel and checking in with a seller on Tues. and taking a client out to look at possibilities on Thurs. plus broker's tour checking out possibilities for clients ...plus all those in between tasks - bank etc...  and I awoke today with a sore right eye socket... what?  I look like T took a swing at me... no telling where this came from but it will go away soon.... I'm willing it...

Today, after a very long day, where we discovered that T has a graft vs host rash --- newly developed and the disclosure that T is finally copping to no appetite and screwed up bowels... ahhh...  I breathe a deep breath... finally, new meds and I can relax.  I'm not the only sentry and after showering, stripping and changing the bed and washing everything... I'm a new person...

T has some new meds and I feel relieved...  I've been making his favorites but his guts have been saying no way... hopefully, with the prednisone etc. he'll come around to eating again.  210lbs.  for our T is way too skinny and my Italian says NO!!!

Happy 4th of July to you all!!!