Today is Monday, June 30th

Amazing changes to this day!!!   Alan brought Riley home to us yesterday... Alan & Susan were sooo sweet and put up with Riley's frantic calls and crazy demands to bring him home to us... along with about everything I'd stocked his frig with...  anyway,  our boy is home and I'm so happy!!!  Stripped everything and bathed our baby and our bed...

To be honest, I was afraid that bringing Riley would be one more thing... but our boy, has brought a richness to our home... he needs to go and I need to go so, first thing this morning I brushed my teeth... Riley heard the cap from the toothpaste drop and he knew he was golden.... we were on our way....
walked into the park and then,  around the huge block... and Riley gave me a bag and then, set to learning his new "hood".

All together once again

Ok so, we're all together and it's hotter than hell but the good news is... T's back... he's able to carry on a conversation... no tastebuds yet but that's coming and we finally feel like we're on the road home....

Oh home... I miss everything about our neighborhood and the beach.... can't wait to be back....

Today is Saturday, June 28th

Hellatious day at the ITA today for our Tracy...  Tracy started out the day by taking a walk across the street to Hoover Park.  Tried the walker.. just not tall enough... but he's determined he needs a cane that doubles as a seat.  Any one heard of that?  He needs a walk aid, a cane that doubles with a seat, that when he's tired, he can collapse on for a couple minutes.... Help?

Wonder why I feel so apprehensive about meds and treatment for our T?   Hmmm...  maybe it's cause when something gets flagged as a problem,  several tests are prescribed and unless I get assertive;  we don't get results.  Tracy had an x-ray on Thurs. & a CT scan on Fri. because he had a spot on his lung. Today, it would have been completely ignored if I hadn't asked... WTF?  I probably alienated everybody today in the ITA because I wasn't settling for the 'no problem'.  You've sufficiently scared me... I want answers.  So, the spot is still there; but they think it may be due to the fact that T has been bed ridden for so long... I don't know... but I am going to start questioning every test and every med that's prescribed.

What I really got today was this is a teaching hospital....  The Dr. came by & finally, after being assertive, I got some answers... then, we were moved to a private room in the ITA and the nurse donned protective gear and took another blood sample and a nose swab without any explanation.  Then, the Nurse Practitioner lost my confidence when she didn't tell why me they were prescribing a new med and didn't know that Walgreen's in the Cancer Center closed in 5 min. at 3:00.  Come on!!! You work here.  Shouldn't you know that?

Then, the topper ( coup de grace?) the Walgreen's pharmacist pulled me aside and asked when Tracy had had his last EKG?  The prescribed antibiotic with the already prescribed Tacrolimus (the immunosuppressant) could cause arrythymia.  So, I stormed upstairs to the ITA and asked to speak to the Nurse Practitioner again.

She was still in the corridor.  I told her that the pharmacist had insisted upon a recent EKG.  She claimed that there was no reason for worry.  This is a $600 med. that as far as I can tell may not be warranted and could be harmful.  There, I've said it.  She asked me to trust her 6 years of experience and continue to trust what she had to say.  I'm not feeling it.  Have I given it to T?  not sure I want to answer that....  am I paranoid?  yes...

This evening, after bathing T, changing & washing the bed linens and watching "Jack Ryan: First Recruit" 5 stars and "Her" not so sure... and Tracy actually consuming a half sandwich of fried bologna & a half banana... Tracy was not well...  oh god...what to do?  I finally decided to let him rest...  gave him a sleep aid...not Ambien and then, I gave up...

Thursday A Dieux

Tracy insisted I make an apt. earlier this week for a haircut & color... cause I was hating my hair and not feeling like me...  Today was the day and I thank you Sereno Group for the gift certificate...

Tina's back!!!

came home to T and after a harrowing day... here's my new du and T actually got out of bed ( after much prodding )

Selfie

Tina & Popeye

AHHHHH!!!!

Today is Thursday, June 26th and T's 30th Day

T's day 30 since transplant.... awoke very early to T talking as if in a trance... he was awake but asking why he ordered Coors lite - which he can't stand... then, he said he'd had terrible recurring dreams all night.... said he hadn't had restful sleep.  Got him up, out of bed and dressed and all of a sudden he was walking and talking uncertainly... juice, sips of coffee and a slice of toast

very glad we had an 8:00 at the ITA... & needed a wheel chair... they're not liking (me neither ) how much edema he's carrying... his legs and stomach are engorged... nor his non-present attitude.

Lucky for us Dr. Johnston and Barb were there to assess the situation ... No more Ambien ( nightmares ) and doubled the dose of Lasix twice a day.  His counts (immunosuppressant ) are elevated so, they're stopping the Tacrolimus until they see us again on Sat.  Chest x-ray today to check his lungs - there's a spot that hasn't gone away & they needed to check his ever moving PICC line )  Tomorrow he'll have a CT Scan to check that spot thoroughly.

I worked yesterday while thankfully, Jayne Tracy-sat... last minute request to show my listing on Maciel and then a listing apt.   Traffic on 17 was a nightmare going south & for some reason cell coverage was non-existent.  Amazing to use the other side of my brain tho'...  

T seemed to lapse into non-presence yesterday... kept thinking he'd snap out of it but he basically, slept the whole day... doesn't remember talking with Jayne, consumed 2 Ensure ( Kirkland brand has less sugar so I've substituted it ) and a couple bites of a PB&J, plus hand fed 3 slices of avocado... 

Nurse Ratchit has a new meds dance thruout the day...  I'm a little fa klempt... worried, on edge... and yet thankful that I'm on duty... huh?

Today is Monday, June 23rd

This says it all:

Numbers are coming up slowly, but surely and T is finding his sea legs...  I'm finding mine too...

Took a walk before T got out of bed this morning... felt so good to stretch my legs...   He's napping now so, I can thank all of you for helping us to get settled.... and Jayne, you came to our rescue Fri. evening... I couldn't open a jar of preserves for  a PB& J ... had loaded up on Gidzich Farms before we left (T loves it) and I even thought about running across the street to the park and asking for help... Jayne stopped to get those rubber thingies to open a stubborn jar and a new gadget that worked!!!  plus bologna and mustard so, I could tempt T to eat... a fried bologna sandwich!  half a sandwich down...

Stanford on Sat.... as always, hurry up and wait... I was reassured by the nurse that it was ok to have them reschedule us from Mon to Tues for our next apt... Jessica explained that T's numbers were better and they were swamped tho' she related to my insecurity...  she had felt the same way when she had her first baby and was discharged to care for her on her own...  sleep heals and we're both catching up.... tho' T has started to call me 'the mad chemist' and 'nurse Ratchit'  since I administer the many meds thruout the day and keep prodding him to get up and move around in addition to bathing him....
ah life.... T is creeping back into his body...

Sunday, Carla and Dayna stopped by for a visit... and then, Deanna and Gary brought us dinner... homemade Italian soup that I'd planned to make instead luckily,  delivered complete with Italian bread, dessert and wine.... WOW!!!   We watched US vs Portugal in the World Cup ---- what a game!!!  Thanks Lou for teaching me some of the nuances of the game last week!  much more enjoyable when you understand how it's played...  wonderful day!!

 I'm glad we have the day off from Stanford today... I've been working on several clients' needs and next is the medical insurance stuff we have to make decisions on altho' truthfully... here I am... writing my blog instead... ok I'll get to it right now....

Keep surrounding our guy with that white healing light please....

Today is Friday, June 20th

We're finding our way... T isn't eating much and naturally, the Italian worries...

Finally unpacked today... just finished in fact.... beautiful respite but I miss home and Riley and our neighbors and the beach... at least we're both in the same place... now let's just get this healing thing going...

so according to Alan... this is Riley's big decision every day

the sun

or the shade

Today is Wednesday, June 18th

D Day for our T...  finally released this evening... oh yah after I rushed to be there close to 3,  begged to be able to double park at the cancer center while I picked up all his meds at the Walgreens and then, on to the main hospital to meet with the dietitians, another Dr. to go over the watch list, the pharmacist to go over the meds and then, finally I went to get my car.... then, I sat in front of the hospital for an hour waiting for T to be transported to the front door... guess they forgot to mention that he was going to have an x-ray before he could leave... duh!!!   sorry I'm venting...

Anyway, I have to say it's really wonderful to be here!!!!  Jayne delivered my pillows ( I seem to have a thing about leaving pillows ) and helped me put T's side of the bed together... we also adjusted all his handicapped paraphernalia for his height and then, we settled in... small dinner and T is now asleep and I'm close...

Our T is on the way back and we have a 9AM call at the ITA... oh boy!!!

Love to you all!!!

Today is Tuesday, June 17th

Tracy was not discharged this afternoon... hated to leave him this evening... one month today, he's been at Stanford and he's very tired of it all...

All T's counts have been coming up EXCEPT for the all important ANC (absolute neutraphil count )  so, this afternoon T received a Neupogen shot.  I spent the afternoon and early evening with him - made sure he took a shower and washed his back and dried him, especially his swollen feet.  He's so dejected... I cuddled with him and told him he'd soon be 'home' with me in our Palo Alto respite... and then, in a week or so, our Riley would join us.

Poor guy can't see beyond this point but we'll get there...

I am sooo thankful for all your thoughts, love, support and white light streaming....

Today is Monday, June 16th

Oh what a day!  I'm convinced that my honey needs to be with me on the road out of here...  Life is all about that plan B....  I keep thinking my honey needs to be discharged into my loving care where he will flourish again... T's counts are down and I've been in and out of tears all day... I wonder about the angst and stress of last week when the direction was get T out immediately and there were no options for housing.... I think I'll have to have something to do with changing that process cause it's just not right.

Our short sale is going to work and my clients that are renting my home have found a potential home that just may work for them and Marilyn is going to take care of them... how did I get here?  and thank God this is the way home...

tomorrow I move to our nesting place in Palo Alto and I will nurse the love of my life back to living...

please surround us with your love and support and white streaming light...

Normalcy?  which way is that?

Thank you for your love and support... all comments are welcome!  and Tracy reads them...

Today is Sunday, June 15th

This will be brief 'cause I'm burned to a crisp...

Thanks to all my dear friends for bearing with us right now.  If it weren't for your help and support;  we couldn't survive.... Tracy's counts are not where they need to be for discharge so...

Dinah and Sally:  I can't thank you enough for the shoulders to cry on and your generous hospitality... opening your home, providing sustenance and guidance through the last 10 days and not only helping me move but providing me with a temporary possibility in Menlo Park at your cousin's when we thought Tracy would be discharged on Sun. and we'd need a place for a few days.  You gals are the best!!!

Gary Reed for helping me move our stuff from Capitola to MP to Palo Alto...  and coming over before I moved from our home to help do a lot of stuff that needed your skills.  You're our hero!

Jayne and Lou for offering your home on Sat. for me to rest my weary head and moving my stuff from MP to Palo Alto today.... I'm exhausted but warm and cozy...

Faith & Em for allowing me to move our stuff in before Tues. to accommodate Tracy's imminent discharge and while we had moving help.

So, keep the white healing light streaming... Tracy's ANC  (Absolute Neutraphil Count) was .1 yesterday.... it needs to go up and quickly...

Love, luck and happiness...

Happy Father's Day!!!!

Today is Thursday, June 12th

Life is what happens or Plan B...

On Tues. finally consolidated everything in one place - Capitola with Dinah's help ...after Mon.'s mind numbing exhaustion... and then, Wed. came along.... as Tracy & I were talking his team arrived.  Next phone call was from a substitute "social" worker that had as much compassion as a stump... she proceeded to tell me that Tracy would be discharged on Fri.  Great news for his recovery but WTF?  Where was I supposed to put him????   She would "help" me find a place to go to (besides crazy) since our Palo Alto place would not be available until Tues. at the earliest.  I begged for more time... a day at least.... Sun. please? and then, I read her the riot act.... What were they going to do?  Roll Tracy to the curb?  They spent all this time getting him to this point and now... GET OUT!!!  What good would it do to cure the patient and kill the caregiver?

I'd broken down my home in 2 weeks- separated what I thought we'd need for 3 months from the other stuff that still needed to be moved out of our home; rented it; moved our stuff 4 times and now was given barely 2 days to find a respite for the next 5 days... BTW:  that new place must be antiseptically clean; within 30 min. of Stanford and with a full kitchen.   Not to mention I had important plans... let's face it... 90 days of 24/7 caregiving is daunting and I wanted a chance to relax and enjoy some time with friends before starting this next phase.

Lea, my Godchild, will be graduating from UC Davis Veterinary School on Fri.  I had planned to be there.  The culmination of a huge accomplishment deserves acknowledgement!!!  Now there wasn't any way to go...  When I explained my desire this "social worker" numb nuts said;  well, just get someone to sit with Tracy... oh yah sure, right after I find a place for us to live.

How could she qualify herself as a social worker?  I was angry, resentful and just plain crazed.  Oh, but she would help me find a place.... Yah... the first suggestion was a studio with a pull down murphy bed in Mt. View at $150 a night... duh, had she even seen the patient?  Tracy is 6'4".  Not happening...  Then,  it was a place in Newark for $200 or was it $250 per night.  Anyone know where Newark is?  It's North of Fremont & Hayward on the East bay and would require a drive across a bridge ... talk about insanity... next was the topper: basically a flop house on El Camino Real for a $105 + tax.  This person was a telephone book with a mouth that had never seen the places she had suggested...  I told her that I'd get back to her right after I ripped her a new one... my friend, Sally heard my end of the conversation on the 2nd and 3rd calls.  I asked her if I'd gone too far and she said no.... the key here was that I should have been told on Mon. at the latest that there was a change in plans... that Tracy, our miracle,  was recovering more quickly than expected.   But here's the thing:  on Mon. and Tues. T had been given blood and platelets.  His absolute white cell count was .3 where normal is 4-11.  T hasn't been able to go out of his room because he was severely neutrapenic but they were now thinking they'd release him on Fri.????

Does this make any sense?  to anyone?

I insisted that I had to speak to his Dr.  There had been a rotation change so, the Dr. we had started with was now on to another discipline.  I explained to the new guy that there had been a  communication break down... actually there had been a total lack of communication... and in this as in all things... communication is key.  He listened but there was no budging on T's release... he said he'd speak to me every day if need be... oh boy!

So, Dinah pulled a solution out of her hat... her cousin has a 2nd home in Menlo Park.  We will be staying there until the 17th.   Oh, I forgot to mention that earlier in the week I'd received a call from the Palo Alto folks asking to delay our move to their home until the 21st.  When I related that to Tracy,  he said "my Dr. trumps her Dr." and we laughed... he's not even a poker player.  So, now I'm  back to moving again.  Fri. and then, hopefully, on Tues. to the place we'll call home for the next 90 days....  right after I have my head examined.

Good news:  The San Jose short sale may be coming to a close soon after a very long 7 months... my buyer has been so patient...  my clients who are renting my home are ready and willing to find a new home and my listing in Live Oak is getting more attention.... and the world just keeps on spinning....

Today is Sunday, June 8th

What a difference a week makes...  T is so much better today than even just a few days ago....

I spent all day yesterday and the bulk of the day today with Tracy and I'm sooo glad to say he's coming back.... no more hallucinations and T is the warrior once again... I must say this again... we are all connected and it keeps reoccurring...

So, I've moved 3x in the last week and finally, I'm settled in with Dinah & Sally in their warm, cozy home in Capitola.  I had moved in to Steve's vacant home ( another BMT candidate ) in our neighborhood and realized I was just too isolated.... a totally zen beautiful home ...but after staying one night at Steves & then staying the night of our book club meeting with Dinah & Sally, realized it would be lovely to be nurtured before the next phase of this odyssey and Dinah & Sally were willing... ahhh... life is amazing and I feel T & I are really blessed with real true friends.  I hadn't seen Alan & our boy, Riley in several days and upon finally seeing them on Fri.; I am convinced we are truly blessed.

So, after helping T shower both days and making sure he did his mouth rinse several times both days & rubbed cream into his arms and legs;  I feel like I'm capable to care for T going forward.  The real issue will be if graft to host disease surfaces but we'll meet that head on and deal... WE ARE WARRIORS!!!

I am rested and strong again and tomorrow I will deal with all the details I've been neglecting... life is unfolding...

so, small world stuff:   I was Facetime ing T the night at Steve's from the couch in the living room.  I love couches, especially when snuggling with mom's afghan.  I happened to show him the room when he said " that's Betsy's painting over the fireplace"... turns out the whole family took classes with Betsy, our art studio guru.

Then, today the nurses changed right before I left and we got to talking.  Turns out she is married to our favorite Dr. Wu!!!!!  Hugs and wonderful feelings and I left our T in great hands...

Keep that white light streaming...

Today is Friday, June 6th

Another crazy week!!!  The good news is T is making progress...  I'll verify tomorrow when I see him.

The hallucinations are over and he's been given blood and platelets over the last 2 days.... and his appearance has changed a bit...

Daddy Warbucks is back!!!

Keep that white light streaming....

Today is Tuesday, June 3rd

Day 7 of Tracy's new life... let's play some catch up... Tracy is extremely lucky.... he's had a few bumps but we'll get through it....  soooooo

Last Fri. Tracy woke up with tremendous pain in his right wrist... my honey, who hardly ever complains about anything was in need of relief.  Lucky thing about being at Stanford... there's always a specialist to consult... so the thought on Fri. was that T's infection could be cellulitis again.  Massive doses of antibiotics, Dilaudin which made T ill and then, Morphine and by Mon. Tracy was hallucinating.... seriously?

I called T Mon. morning after I hadn't slept much of Sun. night due to an allergic response.  When I heard his disorientation and his pain... I literally, threw on a T-shirt and jeans, asked Alan to watch Riley, jumped in my car and zoomed to Stanford.... T was in his own world and hard pressed to come out of it... I was there to see that we figured it out...  T was seeing things with his eyes closed so something was definitely wrong.  The BMT team arrived, examined T and I asked lots of ?'s.  T had refused pain killers and been given 1gram of Ativan and apparently that was way too much.  So, adjustments were made.  I made sure he was given a shower and washed his back and his feet and brushed his hair.... made him comfortable,  ordered some food and finally acknowledged that I needed to sleep and soon.... called Deb & Gar on my way home and crashed on their couch.

Lobster dinner prepared lovingly by Deb, borrowed pajamas, new toothbrush and a shower and I was soon asleep again.  Today was a repeat but with several funny turns.  First thing this morning, T informed me that he'd figured out what was going on...and then, he told the BMT team... the IT guys were screwing around with the Cable and they were  enabling On Demand to watch porn and T was watching a never ending loop of stars and clouds on his closed eyelids  or was that a naked body????   Then, T asked Dr. Rezvani, if he thought he was crazy...  Luckily, Andrew said no, he didn't think T was crazy but they'd get to the bottom of this.... You gotta love T's imagination... and then, this evening T told us that when he closes his eyes he can hear a great radio station playing... oh boy!!!  So, today after his shower and a massive breakfast I'd ordered, T had a consult with another specialist who believes that T has the constantly misdiagnosed "pseudo gout"  and treatment would be a mild dose of prednisone with the consent of the BMT team and sodium levels would need adjusting... 'practicing' medicine and I'll be T's advocate...

Keep that white healing light streaming around our boy please....

More to come 'cause everything happens for a reason...

Today is Transition Day, June 1st

Ai yi yi!!!  I'm bone tired and settling in to Alan's wonderful place.  Riley is getting comfortable and T is feeling better.  I'll check in tomorrow.