About Me

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

Thursday, April 28, 2011

Today is Thursday, April 28th

Lots of work the last few days and not much sleep... I'm a tired girl who needs a day and evening off...  I think I'm gonna take some time tomorrow to escape while Toni is here.  I'd like to sleep through the night and take some time to myself... it has been seven months...

I will start going to a support group next month... perhaps that will help.

Janet & Mike will have a new home tomorrow and Vibeke & Kim will also!  One short sale to go...  207 Toledo is getting a lot of showings since we reduced the price to $849,000 and hopefully, it will sell soon...

It's been gorgeous here on the coast and there's more Spring beauty on the way!!

Love, luck and health...

Monday, April 25, 2011

Today is Monday, April 25th

OMG!!!  What a difference communication makes!  I had to pursue some real answers this morning.  I emailed and called Janell and was able to satisfy myself for the time being re T's radiation treatment schedule, the lumbar puncture schedules and the next regime in the protocol.  I also now know that there is hope...T is doing as well as can be expected for the time being.. he's exhausted and that's normal for this protocol.  He's got a new med to increase his appetite and I'm hoping we turn the corner soon...

I didn't get any sleep last night so, I'm turning in... thanks for all the calls and concern.  We're gonna be better soon...

Saturday, April 23, 2011

Today is Saturday, April 23rd

It's the day before Easter and we are blessed to be here right now.  I keep hoping for a cure, for a breath of fresh air, for something to hold on to....  I realize that I haven't asked the right questions.  Toni says Tracy should have a Case Manager...someone I can talk to....someone who cares about the details and manages his care.  Who is that person?  I didn't know that there should be someone who is in charge of Tracy's care.  Looks like I'm gonna find out who that is on Mon.  We need a road map for this protocol and a med that helps him eat.  I'm tired of not getting any answers.  How long can one go without nourishment?  He's eating a little but not enough to sustain him and he's still voiding most of what he does get down. We need help and answers and I'm not going to give up until I get them.  God helps those who help themselves... well here goes unrelenting perseverance 'til I get some answers and some help.

Seven months of terror has unleashed a lot of fury in me.... they've got some 'splainin to do. I'm tired of crying...  Mon. can't come soon enough!  I've got a full day of work but nothing is more important right now than getting T some help...

Friday, April 22, 2011

Today is Friday, April 22nd

Interesting last few days...Toni, Tracy's sister is here.  Toni is a retired RN with some experience in oncology.  I think psychologically, T's better hearing all the stuff about eating and Compazine etc. from his big sis.  My relief is enormous & knowing his sister cares enough to disrupt her life and come & help is BIG.  T seems to be making an effort to eat and Toni has been driving him to Stanford.   I'm hoping for 'Biafra T' no more!

I realize that I've been depressed and anxious and unable to focus so can you imagine what T's going through?  

Been working through the last minute escrow issues.  It's great to have happy clients for the most part....

I'll try to keep up my blog....sorry guys... I'll try to be better... thanks for the white light!!!

Happy Easter and Happy Passover!!!!

Wednesday, April 20, 2011

Today is Wednesday, April 20th

I'm losing track of what's important.   Tracy looks like Cenz did when he was wasting.  It's scaring the hell out of me.  Toni suggested that we renew Compazine, a med to cope with the nausea, this afternoon.  I called CVS & they filled it immediately and hopefully, it will help with his cramping.  HE'S NOT EATING!!! When he does, he voids the food either one way or another.  Nothing seems to work.  I wrote an email to Janell, our angel nurse asking for help.  He can't keep on this way.  At least now, Toni is here and is in agreement.  Tracy needs something to help him get some nourishment.  He's 6'4" of bones.  It's not my cooking....  Toni drove T to his radiation appointment today and she agrees... He needs nourishment.

I won't give up!

Tuesday, April 19, 2011

Today is Monday, April 18th

Today is the 2010 Federal Tax deadline!!!  Hope y'all remembered!

I awoke with a start around 3AM... I'll pay for this tomorrow or is that today?  I had terrible 'accida' sp? that would be Italian acid reflux... I had to take something to stop it... I began to answer email... it's like somebody was shaking me awake to deal with disgruntled clients...then, the underlying elephant in the room appeared.. It's hard to talk about let alone think about the alternative to T's treatment.  The enormity of what he faces each and every day ... I try to ignore it or just not think about it and in the middle of the night it overtakes me... why him doesn't even touch it...  he's trying so hard to keep an even keel.  I'm seeing a repeat of the reaction to the chemo about a week after each phase.  The inability to keep food in his system and the depression and yes, some anger.

The courage it takes to face and accept his treatment and keep on going is astounding. One foot in front of the other.  Hope and faith.  We are talking about when he comes out of the treatment and giving shape to life after this protocol... that's the only way out, the only way to accept this hand that he's been dealt.  He speaks of returning to normalcy... just the other side of that door.

I had planned to do a lot of errands on Monday... Costco run, meds etc.  I just couldn't leave him.  There's plenty of time for that.  I needed to be with him and yet, he travels this path alone.   Each day I try to be in the moment with him but I'm a lot better at living in denial.... I keep hearing a line from one of Mom's favorite poems  " It isn't whether you win or you fail, be the best of whatever you are".  I just hope it's good enough.  I'd hate to look back and think I could have done better.  Of course we don't ever know while we're in the thick of it.

Sunday, April 17, 2011

Today is Sunday, April 17th

Saturday & Sunday just gorgeous days on the coast!!!  Tracy is trying to build himself up ... the doctor advised that he needed to be doing... so, T got himself going yesterday...he actually washed my car (he insisted!) as I sprayed rose defense on the roses and picked those ugly rusted and spotted leaves off and washed the spittle bugs off the rosemary... we both felt like we accomplished something!  Lila went to the library to pick up "An Inconvenient Wife" for me & the store for a few things so, I haven't driven anywhere other than my driveway in 2 whole days!!!!  The Caminata's delivered dinner last night and we had an early evening.

Today has been a great day!  Toni called to say she's coming out on Tues. to help with the driving etc. for this next grueling phase of T's treatment.  Yahoo!!  A little while later, Jayne & Carla showed up in Carla's new car and we took a long walk on the beach.  Riley has gotten a work out today... 2 walks with Allen and then, the beach...

All escrows are on track and life is good...

We're gonna have an early dinner and then, watch T's home movies.  He wants to convert them to digital from reel to reel.  Don't ask me how... if anyone can figure it out, T can.

Thanks for all your best wishes and support and we feel that healing white light... I'm not so good about keeping in touch these days but love to all...

Friday, April 15, 2011

Today is Friday, April 15th

The last few days have been intense.  Tracy is stretched soooo thin and so am I.  He's down to 200 lbs. and I've had a splitting headache it seems for days.  Days of worry and fear will do that, I guess.  T is depressed and it's understandable with the continual drive to Stanford each and every day and the endless waiting and fear in between appointments... We had the Radiation Consultation yesterday.  Radiation is required as a prophylactic measure because of the blood barriers in the brain.  Lumbar punctures with chemo are also required as a prophylactic measure because of the blood barriers in the spine.... they've done this many many times at Stanford... it's just that we haven't.

T had his mask made this morning which will protect his eyes during the full head radiation.  On to the ITA for labs where somehow unbeknown to us;  T's appointment time had been changed.  Finally we saw Bruno after Dr. Lam, the Fellow, did a full work up.  We were hoping to see Bruno earlier than our appointed time but that never happened.  Actually,  we ended up waiting and waiting and waiting...  Consequently, we waited way too long to eat lunch... timing just wasn't right, & we both ended up nauseous.  T had a strong desire for a Subway cold cut combo with pickles, olives & peppers, mayo & mustard.  All we had to do was find a Subway.  'Around Me' said there was a Subway on the Stanford campus... the trick was finding it.  When we left the parking lot; there wasn't any internet connection so, we went by memory. When we found the street we searched for anyone walking around who wasn't talking on a cell phone to direct us to the actual building that housed Subway.  Lo and behold... We ate that infamous foot long.. followed my nose back off campus to the freeway and finally home to our beloved Rio del Mar...

Tracy starts radiation therapy on Tues. along with a lumbar puncture laced with chemo  and then, chemo pills to take at home at night. Five days on, two days off.  Repeat for two weeks, then two more days of radiation.  A lumbar puncture weekly for five weeks.  Then, finally a break.

 Surround my T with white light and lots of strength... we both need it....

Tuesday, April 12, 2011

Today is Tuesday, April 12th

Keeping up over the last few days has been tough.  On the way to my office meeting this morning, I was listening to "The Writer's Almanac".  Garrison Keillor spoke of a legendary writer who felt the most important thing any writer did was bare their soul; revealing truth...  honesty....

Mr. T has been having a tough time the last few days... tho' he ate last night and tonight for which I am profoundly grateful...  it's very tough to stand by and not be able to fix what ails him or soothe his aches or pains... Of course this is not about me but about T's valiant invincible fight.  I'm having a hard time standing witness.  Today's labs verified that T is once again neutrapenic.  So, Neupogen shots continue and I keep trying to distract him and life goes on...

Sunday, April 10, 2011

Today is Sunday, April 10th

Have you paid your property taxes?  Thank God I remembered yesterday!  They have to be postmarked today, so get on it!  Luckily for me, while doing my tax preparation for my appointment tomorrow ( not that I waited to the last possible moment and found every distraction conceivable not to complete the prep and stretched it out over 2 days or I should say 2 weeks) I finally came across the bill and the light bulb went off.  I was about to run to the post office & my wonderful neighbors, the Caminata's, not only took it for me; but delivered a casserole for our dinner.  Thank God for my wonderful neighbors!  Meanwhile, Allen walks our Riley religiously twice each and every day... and Linda keeps me sane.

Tracy has been pretty punky the last few days.... After his labs appointment on Fri. he kind of went down hill.  He was pretty cranky cause they weren't ready for him and he had to wait for me to return to pick him up (I'd gone to see my chiropractor, Cathy Sy).  He's had a hard time keeping anything down and/or having an appetite.  Today's he's trying to be more amenable but I'm just plain worried about T.  He's so weak and yet he's trying.  I finally finished my tax stuff and I just can't stop hovering over T.  He has the next appointment on Tues. at Dr. Wu's office and I'm thinking he's gonna need some blood.

Send all the white light you can muster please?  He needs the strength!!!

Friday, April 8, 2011

Today is Friday, April 8th

I am incensed, outraged and pissed off!!!!  Our federal legislators have once again put the people who pay them, that would be you and me, at risk.  They're simply not doing their job while they point fingers across the aisle and our government comes to a grinding halt.  I think that all pay and benefits should be suspended for all legislators on state or federal level until they do their stated jobs which is to legislate.  How anyone can look themselves in the eye, while saying you're at risk while I've got mine is beyond me!  I respect the fighters and the fight but people's lives are on the line.  While some fight for corporations and others fight for women's rights; the lobbyists get rich and the middle class continues to be squeezed into non-existence.  How can anyone justify tax cuts for billionaires and corporations while decimating medicare/medical benefits for the needy or education funds across the board?  The last 10 years should be ample evidence that tax cuts for the rich and special interests absolutely do NOT stimulate nor grow the economy!!!!

Meanwhile, the FDA, SEC, FCC, reformers, safety experts, whistle blowers protections are dwindling or horribly hobbled and the 'I've got mine' philosophy flourishes.

50 states are represented on a national level by elected federal senators and representatives.  Each individual state has a slate of elected state senators and assembly persons representing every district in the state legislature.  You would think that would guarantee that we, the people, would be represented and our interests protected.  I don't feel that way.  Do you?  The moment most legislators (not all) are elected; their agenda is set:  Re-election. Within a very short time, campaign fund raising begins anew for the next election.  That means that every lobbyist will make known what their specific agenda is and what their support will mean in terms of re- election dollars.  I feel jaded.  I don't know of any politicians who start out poor and leave office remaining poor.  Do you?  Why aren't our elected on the same medical benefits, social security and medicare schedules that you & I are on?  Why, after serving only one term, are any federal or state elected officials given benefits/pay for life?  Why aren't they subject to the same social security benefits that you and I work for?  As a self employed person; I have to fund my own medical coverage and retirement plan.  I made that choice and I'M paying for it.   I believe that if our elected were relegated to the same health care coverage, social security and retirement benefits as we, their electors; there would be amazing changes!  Some of the recently elected federal senators and representatives were astounded that they had to wait 30 days for their medical coverage (paid for by we, the taxpayers) to kick in.  Simultaneously, the same folks were screaming that health care reform for you and me, the taxpayers, was socialism.

It's astounding to me that we heard little or nothing about this.  Of course the FCC and anti-trust laws were decimated several years ago.  It's no longer a problem or conflict of interest to own TV, radio and/or print media in any given locale.  So, guess who decides what news we hear or read or see?  I could go on and on and on... but I'm exhausted just thinking about it and I feel powerless.

Time for change is NOW!!!!

Wednesday, April 6, 2011

Today is Wednesday, April 6th

Talk about having your fears vanish... Stanford appointments are a breeze today and cause for celebration!!!!  Tracy is making a comeback!!!  He's only 207 lbs today BUT he's just north of being neutrapenic... so his numbers are making a comeback...he's just started Neupogen shots every other day and the next phase of the protocol will be starting soon.  He has to have labs on Fri. & Tues. but that can be done at Dr. Wu's office in Santa Cruz  Yahoo!...  The Radiology dept. at Stanford will be contacting us about setting T up for 2 weeks of radiation to the brain (apparently chemo doesn't get to the brain tissues but who knew?) 5 week days each week and T will also have a lumbar puncture (with chemo) for 5 straight weeks and chemo pills (oral) and then, who knows?  Supposedly, then he'll have a break for awhile.... do I hear vacation?  Bruno was so content and happy about T's results and progress.  I'm sooo intensely relieved... I had received the news from Jari yesterday that Joaquin had passed away.... he was unable to have his transplant because he had had recurring pneumonia... life is fleeting and this fight is valiant for all those courageous people fighting the big C or any of these cursed diseases.... faith and love gets us all through.  I thank all of you for your thoughts and prayers and encouragement.  I was feeling mighty bleak but hope is back and my faith remains strong....

Short sale just approved the extension of COE to 5/20,  so thank God all parties should be happy about that.  Janet and Mike's new duplex should close next week.  All is well.

Life goes on... and we're happy to live another day!!!

Tuesday, April 5, 2011

It's almost Tuesday, April 5th

My heart is breaking...the love of my life is struggling to maintain and I keep trying to work so that we can continue our lives and yet nothing means anything...  I realize I spend the time trying not to really be in the moment when we're at the hospital...it's frightening and awesome and mind boggling and Tracy just accepts and goes on.  I observe so many people in so many different phases of treatment. I'm terrified of T's next phase... terrified that somehow it will alter my T... that he will become someone else, a muted version of the original...and yet I will accept that too so long as he is... I've stopped wearing eye makeup because I cry at the slightest thought of T and his pain.  He accepts wordlessly and keeps moving... not complaining... he's taken to continually moving from chair to chair ,,, room to room.  He says he can't get comfortable anywhere but in his bed. ...and I believe that he's so bony it's tough for him to get cozy.... I found a song he wrote the other day I believe while he was getting treatment,,, it's about facing the specter of death...  it's gorgeous and so full of truth.  Can't imagine the tune.  Still we go on...open each door and tread oh so carefully...

Saturday, April 2, 2011

Today is Saturday, April 2nd

April Fool's Day got by me.  It was Friday so, after Tracy, my hero, helped to save a Pomeranian from 3 Pit Bulls on Cliff Drive, we spent yet another day at Stanford.   Ok so, we heard all this shouting and screaming outside.  I was in the master bathroom and I asked T what was going on and he said it was just some kids playing around.  The next thing I knew paramedics with sirens were arriving soon to be joined by the fire dept., animal control and the sheriff's.   So, I was still indisposed and T wasn't answering.  I threw on my bathrobe and ran down the exterior stairs scared out of my tree... thinking Tracy had collapsed and someone had called for paramedics.  My next door neighbor, Melanie, must have seen the panic on my face as I made the fence and said Tracy?  She said she'd find out what happened, when all of a sudden, Tracy walked up.  Apparently,  a man was walking with his Pomeranian when the dog was attacked by 3 Pit Bulls.  Tracy, the last person in this world who should have gotten in the middle of a dog fight, distracted one dog as Allen distracted another and another person grabbed the other dog.  The little bloody dog was being cuddled by someone else... the owner?  It all happened so fast...  Tracy read the dog tag and knew immediately that the owner was a new neighbor over on Townsend, next to Judy.  So, he proceeded to the house that was completely open where the clueless owner was sitting with some buddies on the back patio, who then jumped in his car and went to the scene.  ai yi yi!!! Quite the excitement!!

 T was now exhausted and looked kinda punky.  We arrived at Stanford only to find that someone had canceled his apt. earlier in the morning without informing us.  I found Arnell who said he'd take care of it.  Apparently, 5 nurses had called in sick and everyone's treatment was being delayed etc.  So, we were able to get T into the ITA quickly only to find out that the chemo would have to be delayed until Mon.  Unfortunately, I have a fully scheduled work day on Mon.  So, Bruno had to be consulted and with his blessing, we elected to go in on Sun., tomorrow instead.  T's counts were going in the right direction BUT he needed platelets.  So, we spent another long day at Stanford.  Tracy was very restless... scooting around on a chair with wheels while he awaited yet another bag of goodies.   I tried to break the monotony with a burrito from the Mexican bistro and he welcomed the food!  Finally, we arrived home and after I made a martini run to visit Jim & Linda... we ate a late dinner and were in bed asleep by 9.

Today I'm avoiding doing the work on my taxes that I need to get ready by writing this blog and making some phone calls.... I'll get around to it soon....