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Concerned Citizen and a Serial Entrepreneur wrapped in a progressive democratic soul longing for us all to get along.

Friday, December 27, 2013

Today is Friday, Dec. 27th

This year Christmas will be remembered because we spent it quietly together, welcoming Carol with shrimp cocktail and filet mignon and mashed potatoes... mmmmm  and then, the visiting nurse arrived and sometimes you know when they're only in it for the $$$.   It was great that our T was seen but she was in & out quickly and when I thanked her for coming;  she said "somebody was gonna pay big for this one"... nice...

We walked on the beach and waited until mid afternoon (T needed a nap) to open our presents and we were thankful for the day and each other....

Riley with his new present

T relaxing
Merry Christmas to you all!!!

Tuesday, December 24, 2013

Today is Christmas Eve, Dec. 24th, 2013

So we left off on Sat.  as I was hoping to rescue T from Dominican... told he'd be discharged at 12:30, I huffed and I puffed and finally we left about 2 and T was free with a commitment that the visiting nurse would be by that evening to instruct us on how to flush his PIC and administer a VANCO trough to rid his infection. argh... and so the story goes...  twice a day with the help of PIC line extensions T flushes and administers the antibiotic for the next several weeks.  I'm so thankful that T can do this!

T is amazing!  He is ready, willing and able to do whatever it takes to live and his attitude is phenomenal.  I am trying to muster up all the energy needed and so far so good... altho'  I just read the riot act on a recorded line to the Walgreens person gathering the info needed for T to get his Neupogen delivered to our home.  I didn't swear nor did I raise my voice.  I just very sternly questioned why the prescribing Dr. now must justify to Blue Shield the reason T needs Neupogen and said this whole process is wrong and unacceptable.  Isn't it obvious by the sheer fact that the Dr. prescribed it????   So, instead of making it easy for a very needy patient, Tracy is forced to go to Dr. Wu's office everyday for a shot until Blue Shield decides to release the meds and oh by the way,  it's much more expensive for T to get the shot administered at PAMF.... duh

I digress but if you read my blog, you know that.  So, home for T late afternoon Sat.  Sun. was an entire day of football and T's first trip back to the beach in over a month.  We took it easy and T is nowhere near Riley's presents as we park at Platforms beach and walk to Seascape and back..  T is so glad to be home and reveling in the spirits of the sea...  I took care of business... worked most of the day on several deals, visited with Pat, pizza and finally bed...  oh sweet bed and peace...

very early Mon. morning we arrived at Stanford at 7:15... and T had his labs and then, we joined the queue for the clinic visit with Dr. Liedtke.  OMG!!!  I heard it... she said "REMISSION"  stunned we both reeled and then, T in his inimitable way, said so why do I need anything else?  Well, this is not endurable or lasting and his counts are still non-existant... what's next?  Chemo every Mon.  and hopefully,  Penn later next month...  we're hoping for entry into the Penn study after the 18th?  Pray hard, surround us with white healing light and FaceTime.

T wants to live normally again... so, stop by if you're well and not exposed to illness... and soap up and visit... my eyes kept leaking... tears of joy kept escaping... as we wound our way home with a stop at Costco for gas and supplies and then, several hours of work until a cooking frenzy forced me to make eggplant parmigiana and T's favorite Marchegian sauce while we watched our 49ers fight their way to victory!!!

Merry Christmas eve!!!

Love, luck, health and happiness!!!

Saturday, December 21, 2013

Today is Saturday, December 21st

Catching up is hard to do but necessary... Wed.,  T had a very long day at Stanford as they topped him off with 2 units of blood, platelets and a bone marrow test.... release sweet release after almost a month of Stanford hospitality.  Courtney, Janice, Dr. Franks took their turns and finally at 7PM I retrieved the chariot and we escaped... home sweet home Riley awaited his daddy.  T was pooped so,  straight away to bed and dreamland with Riley tucked in between.  T had a hard night and I awoke and mobilized.  CVS & Blue Shield had to be tackled & retrained since our Alan had been charged for T's prescriptions and so I greeted Thurs.  After several phone calls, a trip to retrieve an additional pain med and a lot of frustration, Jan & Tom picked me up for Eddy's funeral in Livermore as T & Riley got reacquainted... singing home for the holidays...  ahhh....

Eddy Paul Pevarnick was a father extraordinaire.  He fathered Deb, Di, Gail & Denise and took in his siblings children and then, added all of we strays to the mix.  What I will always remember about Eddy is his bear hug and constant humor.  Everyone was welcome in that warm home in Cupertino and food and libation would always be shared.... and Eddy's ear would be to the ground waiting to help or humor... What an enormous presence filled with so much unrestrained  undisciplined non-judgemental love.  Eddy took us all on and we kept coming back for more.  never a complaint except "where you been?"  Thank God for having stumbled into his warm embrace as our world will miss his larger than life ways... "Eddy" the one and only has newly acquired angel wings.. may he rest with the rest of our families... we toasted him with a White Russian at the reception and caught up with long lost friends.

T & Riley home awaiting a late dinner with me...  unbelievable how that feels to come home to T again... T was very tired and I was ready to collapse as we climbed into bed about 9:30.  Then T remarked that his PIC arm was hurting... after a glance we mobilized.  Off to the Dominican emergency room where we waited and dozed until T was put in a room and we cuddled on the gurney.  T would need blood tests etc. but ultimately,  he would be admitted.  His PIC line was infected. I left him to go home to sleep as Friday beckoned.

T is in room 2310;  I went to an inspection of 123 Camino Pacifico, gathered all the signed disclosures .. on to a comparative marketing apt. and then,  the office.  Craving sleep but duty called... my poor T stuck at Dominican.  He's soooo sick of hospitals and Dominican just doesn't measure up.  The first thing I made a deal over was the wide open door.  T then laid out the fact he'd been ignored for the last 3 hours without water etc.  The nurse got an earful and we schemed to rescue him on Sat. with a visiting nurse to come and show me, the squeamish one, how to flush T's PIC line.  Home to veg and sub for T on the massage table... sleep beckoned but elusive until I took a sleep aid  and now the dawn starts a new day....

Tuesday, December 17, 2013

Today is Tuesday, December 17th

Our Adolfo's story as explained by Pat:   I am writing to let you know that my dear friend and handyman extraordinaire, Adolfo Ramirez,  is the father of the young woman, Daisy Ramirez, who was hit by a car in Salinas on Saturday night while crossing the street in a crosswalk. She is in a coma in critical condition at the ICU of the Regional Medical Center in San Jose. She has a severely fractured tibia as well as broken pelvis, scapula, and clavicle, but the major problem is she has a severe brain injury. The doctor said it could be several weeks before the swelling goes down, so they cannot determine the extent of the damage until then. One can only imagine the impact this will have on this 18 year old girl who was had just taken on an intensive program at CSUMB and Hartnell colleges in June with the goal of attaining her degree in Computer Science in just 3 years. She had already been approached by Google while in high school due to her already-developed computer skills. She is a true star and the light of Adolfo and Veronica's eyes.
 As you likely know, Adolfo is the sole bread winner in the family, so if he does not work each day, he is not paid. Given that he must travel to San Jose each day with Veronica, his wife, he is unable to work, at least for the next several weeks until there is some plan in place for Daisy. As you know, he has been the "go to guy" for me and many of my friends for our unending home improvement and repair jobs. He is an amazing man and devoted husband and father who is devastated by this event.
I hope you share our sorrow and sadness at this horrific situation. We know we cannot help medically, but we can help assuage his financial fears if we each could pitch in toward his rent and living expenses. 
If you are interested please contact Anne Marie for the information to send a check.

 We all know how helpful it can be when a bunch of caring people pull together at a time like this. It is likely to be a long, hard struggle and the Ramirez family will need all the help, support, prayers, and love we can give. We greatly appreciate anything you can do.
  Take care of yourselves and hug each other just a little harder! Life is very, very fragile!
Pat and John

Make a wish:  Daisy Ramirez returns and the Ramirez family survives this.  This is a very deserving family.  Love to you all.

More to share... Eddy Pevarnick, the Patriarch of the Pevarnick family, father to Deb, Di, Gail & Denise and father figure to us all;  joined the angels yesterday.  The funeral service will be 1:00 Thursday in Livermore.  I will always remember Eddy's humor, quick smile and loving embrace.  He took us all in to his huge heart and family and we will miss him dearly.

Be kind to yourselves and to each other... we have today... let's embrace it!!!

Sunday, December 15, 2013

Today is Sunday, December 15th

Lunch with a dear friend... seals leaping over the waves chased by dolphins... neighbors helping to  put up our tree...others dropping off food.. dinner made with love... FaceTime with my T.... I'm overwhelmed and scared... feeling lost and found... every day is different.  A new challenge, a new problem to be solved and the sun comes up every morning on a new day and our Riley wants his tour of the beach.  He stands for being washed with cold water cause he loves being caressed by towels and all the attention...  all these elements of any given day give me pause... the wonder of life.

I've been very apprehensive about the next step.   Tracy's care is all consuming.  Should something happen while I'm caring for him... if I make a mistake or not notice something important...  the stress, the fear,  the weight ... my shoulders ache already. ... Dr. Frank came in yesterday so we could ask all the ?'s we had and discuss the possibilities... thank God for that.  It comes down to this:  temp over 100 degrees - call the ITA asap;  next step either emergency or back to Stanford.  Simple really..  T has been very patient but he wants and needs to come home... it's been over 3 weeks and he's tired of all of it... but he walks and he makes friends; he deals with it all with such enormous heart... I love his heart....  and his courage...  life is truly about how you handle plan B.

While FaceTime ing T as we watched the game today... our glorious win over Tampa Bay.. Pat called to give us some horrendous news that I can't quite cope with.  Adolfo has been our saving grace... he built the art shack that T designed and he'd been helping me in the house for weeks now.  His beloved 18 yr. old daughter attending a special combined program at Hartnell College & Monterey was crossing the street in a crosswalk and was hit by a car yesterday.  She is at the Trauma Center in San Jose in a coma with a bleeding brain and broken bones galore.  How does that happen? Please surround her with white healing light and if you can help in any way... money, lodging for Adolfo  (they live in Watsonville and his wife won't leave her daughter's room) you will be dearly blessed.  Contact me and I'll set up a fund for our Adolfo... they're going to need a lot of help.

BTW:  As always any comments or messages are welcome.  T can't have any visitors cause his counts are so low but FaceTime is just like skype only with an Apple device.  Try it you'll like it and so will T.

Thursday, December 12, 2013

Today is Thursday, December 12th

I startled awake at 1:30am and thought it was morning... gazed at my iPhone and started playing solitaire...then reality struck.  My T is NOT here... and so the saga continues...  I had put a bag together for T on Tues. evening...AAA batteries, T shirts, toothbrush plus a Subway order for a foot long cold cut combo and a root beer.  Wed. morning was cold, crisp and clear as Riley & I set off for our beach... greeted the usual walkers and rushed back for coffee and decided to dress for my honey... green velour dress, textured tights & boots w/ scarf (my honey gave me awhile back) & some fun jewelry....Called in the lunch order & scooted off... Cupertino for the sub and great timing until I hit the Stanford quagmire... several roads blocked off for the huge building project... T reassured me that we'd see the Dr. after the musical program so not to worry...  On the way in, I checked for a room number for an old pal... turns out he's right next door to T.  He mentioned that he had heard T rooting for the Bears on Mon. evening... and he's Bruno's patient too... weird, huh?

Off to hear a wonderful 2 guitar musical arrangement of the Nutcracker Suite in the Atrium and snuggle with my T.  Music is our key... bonding and melding into each other ...  concert over  my mission was to find root beer (I'd forgotten it)  so, winding thru the underground maze to the children's hospital cafeteria for 'diet' root beer... didn't make T really happy but that was all there was..  lunch & a knock on the door... Bruno!  We didn't expect to see him cause it was his first day back -  he'd gone to Brazil for the holiday and then upon return - a biz trip to New Orleans.  So, we were so pleasantly surprised to see him.... with the straight story.

This protocol is an intermediate step.  We hope for remission but there will be a next step... asked whether T could come home after this cycle?  it's not a question of 'can' he BUT should he?  His Neutraphil count isn't even registering so, he's susceptible to anything and everything.  How many cycles of this protocol?  what's next?  Wait and see...  Bruno said there's a 'sexy' new protocol... no statistics, no idea what the outcome could be... something to consider or transplant?  known outcome and predictable results.  or Penn study?  Well, the real question for the Penn study is what are they working on right now?  Are they testing folks who've relapsed after one protocol or two? Or patients that are in remission?   Lots of questions and no real answers as yet but lots of food for thought.

Bruno left the room and T made room for me to snuggle...  and Albert, T's nurse took this...


Monday, December 9, 2013

Today is Monday, December 9th, 2013

Very busy weekend so let's catch up...  I saw T on Sat. for an afternoon visit.. walked and talked and wished I could have curled up beside him...
T 12/7/13

Look at that hair

So T is faring well and flirting with all those wonderful nurses... During my visit Casey related that she'd walked in on T several days ago when he'd been freed from all IV's for a little while and T had Santana's 'Smooth' playing as he danced around his room.... our song... can't wait to dance with him again... soon

So the news:  once a week chemo infusion for a 3 week cycle starting last Tues.   Not sure how many cycles and whether T will come home at all in between.  argh...  
Naughty boy

The coast has been absolutely alive with marine life... anchovies ever present so, yesterday, Sunday, Riley & my walk on the beach was amazing... I could hear the seals from the trail... looked like Hitchcock's "the Birds" and the dolphins were frolicking amongst the otters and seals...  Home to put in a couple more work related hours and then, off to the Whitnicks for the Niner game!!  Good news: They showed up and beat those rascal SeaHawks and what a game!!!  Riley loved being in a different house and being fed tri-tip and assorted cheeses and crackers...  I was glad to be surrounded by family...  FaceTime w/ T was sooo fun as we all watched the game...

I'm off to show property... keep sending white light to surround our T and Carpe diem!!!

Friday, December 6, 2013

Today is Friday, December 6th

The good news is T is doing well... his spirits are up and I'm loving FaceTiming him!  He looks great and I can't wait to see him...

I had a great day yesterday!  Lots of work related stuff- previewing property, preliminary study for a potential listing and great news that David's offer was accepted for a San Jose home.  I'm very glad for him!!!  Today I had a listing apt. and am very excited about the opportunity.

and then, there was a very strange call from a 'care nurse' wanting to speak to T.  After explaining that he was in the hospital and I could speak for us; she proceeded to try and get an apt. to 'help' us through this difficult period.  I kept asking what she could do for us and finally she said she could explain stuff to me.  I said that wasn't necessary and that I didn't have a problem questioning anything  (she certainly doesn't know me) I didn't understand and basically questioning everything.  Well, she ended up calling T and asking to meet with us.  Since I hadn't had a chance to speak with T prior to her call; he consented and asked her to call me to set it up.  Once again without speaking to T first; I went ahead and scheduled it for mid-week.  I've had a bad feeling about it all day, then, I finally spoke with T.   We agreed.  We don't need Blue Shield to get in the middle.  I'll be canceling that meeting directly.

So, with the love and support of our family and friends we'll make it through this and live to fight another day....

 May Father Mandela rest with the Angels as he so deserves...

Carpe diem!!!

Wednesday, December 4, 2013

Today is Wednesday, December 4th

Aching heart... twenty four years ago today Daddy passed away... awoke this morning feeling very sad and stomach sick... so I decided to give myself a day off... been meaning to just vege and it hasn't happened.  So today, I tackled my Quicken issues and with the help of Kirk Reid, phenomenal tech support!  I was able to get back into it and take care of finances.  Phew!

Tracy had a very bad night BUT the good news is he was going to go to the holiday ballet in the Stanford Atrium today and his paperwork has gone to Penn.  OMG!  Tears of joy!  I'm taking deep breaths and I hope you'll all send good intentions to Penn too and surround our boy with white light.

So, Daddy was ill and in hospice for about a week when he passed away.  His body had just given up.  He had been ill for a very long time.  I had moved back to the east coast, DC to be closer to my elderly folks (a 6 hr. drive up 95 in my BMW, a puddle jumper to New Haven or a relaxing train ride)  I was HR for the Apple Federal Systems Group & Govt. Affairs.  I felt very torn and unable to grieve ... death is complicated .. I was almost relieved because his caregiver, my Mom, was failing under his pressing needs.  How do you deal with that?  I tried to get back to work in a week... that's what corp. America deems plausible and several years later it hit me like a ton of bricks.  My advice:  take the time to grieve...   So, like a lot of folks, Dad & Mom had waited for WW2 to end to marry.  They were older when they had we 3 kids so, just when I was mature enough to have a relationship... they were gone.

Now, I'm almost jealous of my peers who still have their parents in their lives... but I was lucky to have them for as long as I did.  Rest in peace...Daddy.

Carpe diem

Tuesday, December 3, 2013

Today is Tuesday, December 3rd

Timing is everything!  I keep repeating that mantra and it keeps on ringing true...

I'll admit it... I had a melt down last night.   I was pissed at myself for wasting time over the last year arguing or just not talking to my T.  What a stupid idiot to not have seized each and every day!!!
My partner in life was at the heart of it all... I finally slipped into dream land, realizing that today would be a new day.... isn't it amazing how that works?  we get the opportunity to start fresh every single day!  Carpe diem!!!

Frustrated that my dryer chose yesterday to cease heating...one more thing to deal with... after Adolpho did everything he could to clean the hoses... I put out the call to my network for an appliance repair man.  This morning before we left for the beach, I called C&N Appliance Repair.  Ken reassured me that he knew my Maytag Neptune inside & out and he really did!!!  He even had the part in his truck and in about 20 min. my dryer was back!!!  He's the best!!!

So, Riley & I set out for a walk to the beach this morning and he was soooo excited!  We walked and I felt the salt air renewing me. Afterwards as I was rinsing our boy off, I noticed his skin was irritated around his stomach and groin.  Poor thing!  Immediately into our shower, amazed as he willingly entered without so much as a backward glance... he smells so good now and he's stopped constantly licking...Riley is back!

I Facetime'd T and he's starting on the Itusaman (spelling?) clinical trial today.  Treatment has begun.  He's on the road back...

Catching up with some clients and then, I'm going to slip into my slug station and just plain vege.

CARPE DIEM!!!  White light surrounding us all...

Sunday, December 1, 2013

Today is Sunday, December 1st

Good News?  We could all use some!  Bad News?  I'm out of steam...  So, thank you all my friends and family for the phone calls and emails!!!  Your support and concern are phenomenal.... but please try to understand... I feel like I've run a marathon and didn't train for it and by the way,  there's no medal in sight.  I'm going to rest at home for a few days.  Take care of business and restore my energy.

Please forgive me if I don't answer your phone calls & emails right away... try to understand there's only one of me and you're all important to us,  I just need to regain my strength.  Traveling is brutal and I hit the ground running.  Wrote 2 offers yesterday and drove to Stanford... today I went back to meet with T's doctors....

We have great hopes!!!  T is in good hands even tho' Bruno is still out of the country.  We met with the team this morning and we're satisfied.  T will need to start with a new protocol very quickly.  The leukemia cells that have emerged were not extinguished with the initial protocol.  Continuing down that road would be fruitless.  There is a Stanford trial that T will hopefully, be accepted into shortly...

With our permission today, T will also be submitted for the Univ. of Pa. protocol that we read about last year in the NY Times.  One of the Drs. we spoke with has the personal experience of having referred a patient for the study who is now CURED!!!!  We want in!!!! ... the new Stanford trial has not yielded very long remissions but T needs intervention asap and it will NOT preclude T being considered for the U of Pa trial.   Of course, Stanford will probably have the same clinical trial sometime in the next year or two.  Unfortunately, that won't work for our T.

 Send white light please and all the good energy you can!!!   Upon admittance to the U of Pa study,  T will have to go to Pa. and have T cells harvested.  Not sure of all the time constraints etc.  but we're going down this road with great intention and lots of enthusiasm cause we want our T around for many years to come...

Love, luck and happiness...  you know, timing is everything!!!