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

Friday, February 28, 2014

Today is Friday, February 28th

It's the last day of February and it's raining!!! All those rain dances are working!

Lots to tell from my slug station gazing at the storm...  I feel like we've taken control again!  Yesterday was a trip to Stanford and dashed hopes for treatment.  Three times Tracy's counts have been too low for safe treatment and he will have run out of time and be booted from the trial by the first week of March.  Yesterday we challenged the Dr.'s and just kept pushing... When Tracy asked "how long 'till I relapse?"  the reply was a couple months.  We asked if he should take Neupogen to drive up his counts... "I can't tell you to do that" but it was with a wink and a nod.... it may help our boy but it would skew the stats of the clinical trial and Pfizer is king.  I've got a lot to say about a screwed up medical world where the drug co. rather than the doctor rules and the patient be damned.

Anyway,  the Fellow who came in first, Sheema, was very direct and respectful.  We decided to go for it and I asked why Tracy hadn't been given a bone marrow transplant last year when he was in remission.   His reply was very telling...  it's a last resort since it's a very onerous and dangerous procedure for the patient and the statistics if you survive are good but it's the last stop.  So,  then we asked about Penn and he said that's the ticket.  That's a cure and yes there's nausea & flu like symptoms during the treatment but that's it.  Then it's over!!!  You're cured!  Here's a link to the Penn Study including a fascinating video explanation from Dr. Porter:


So, we pressed some more when Dr. Liedtke arrived... she said call Penn and get an apt. and they agreed to send/fax Tracy's info to Penn when asked.

So WE DID IT!!!   By the time we got home from Stanford yesterday;  it was about 4:30 EST.  I went to the URL I've referenced above and called the number and I actually was finally connected to a real live person who was the Clinical Trial Navigator with a heart.  I began to explain T's saga but when I got to 2-3 months before he relapses;  I broke down.  Handed the phone to T and he answered more of the ?'s.  When I collected myself;  I took back the phone and we were given hope!!!  T sounds like a candidate and Dr. Noelle Frey is administering the next study.  I called her assistant, nurse? not sure and actually just spoke to her this morning.  She asked for T's records which I've just asked to have faxed from Stanford and she told us the next intake is April.

Pray please for our T to be admitted... send white light to surround us and most of all bless all of us!!!

My faith keeps me going and I'm trusting my gut that Penn is the ticket.  I've always felt we were blessed to be in Stanford's care but with the continual frustration with the clinical trial and now the missgivings I have surrounding the bone marrow transplant ( which is our last resort ) I'm praying for admittance to Penn.  Feels like back in the day when I was awaiting responses for law school... Cal - Boalt & Stanford turned me down but Hastings admitted me... I had a choice and Tracy & I at least have valuable options!!!

Just spoke with the Stanford coordinator and he says Pfizer will allow the next cycle to begin... Mon. here we go again...  white light needed!!!!

Saturday, February 22, 2014

Today is Saturday, February 22nd

We're officially crazed... this has been an awesome day!  We awoke to intense sunshine in a totally clear blue sky as we walked the beach for hours with our Riley observing frolicking dolphins leaping in  and out of the waves as we let our minds wander....

The last two days have been intense.  T's counts were once again too low to start the 3rd cycle of the Inotuzamab trial.  This after being awakened by the smell of skunk on our beloved Riley at 1:30 am Thurs. and acknowledging that we were due at Stanford at 7:45 am.  Luckily we keep the skunk cure ingredients in the laundry room so, as I stripped the bed and gathered Riley, T put the concoction together ( Dawn, baking soda, hydrogen peroxide and enough warm water to make a paste) and we all got into the shower and proceeded to coat our smelly boy.  By the time we finally got into bed;  we knew the next day was going to be a long one....  and so it was...  we were told by Dr. Liedtke that we couldn't take a chance with the chemo as yet.   T asked " how long until we can't proceed because the protocol won't allow it?"  The answer:  "2 weeks."  So, I then asked if she were in our shoes,  what she'd do?  She took a deep breath and acknowledged that Penn would be her first choice.  Problem?  yes.  Even if Penn were authorized by the FDA  to take new patients; T would have to be in relapse and although his counts are very low and he's neutrapenic, his bone marrow is clear or at least the leukemia is not detectable.   Unfortunately, at this time, Penn is not an option but bone marrow transplant is.

On Fri. after meeting the Listing Agent from "hell" for entry to do our inspections on David's San Jose short sale we proceeded to Stanford to meet with the Bone Marrow Transplant team= the BMT.  Oh boy!  First, the social worker who basically, couldn't answer any relevant questions and then, on to Dr. Rezvani who will lead the team.   He answered our ?'s and explained to the best of his ability the demands of the procedure... and we are still reeling....  then, we met with the coordinator who tried to give us some timetables followed up by another blood draw specifically for the BMT and to
have T's PIC serviced.

We've been trying to digest it all and process what we can but I'll admit... I'm like a deer in head lights.  We've committed to 24 hour care by me for the 90-110 day time frame,  T shall be abstinent from alcohol and pot forever after and no food not prepared by me - no restaurants or take out during the BMT and we must be within a 30-40 min. ride to Stanford with no exposure to animal feces... how the hell do we do all that?

Needless to say... there's lots more to say but I'm overwhelmed.  I NEED A VACATION!!!  I think we'll take a ride sometime soon to parts unknown... just for a few days before this next odyssey starts...  We're gonna need a lot of help and ideas please... we've got about 6 weeks before, hopefully,  a donor is identified and then.... send white light please... we need your help

Tuesday, February 18, 2014

Today is Tuesday, February 18th

It's been a long hard haul but it's definitely been worth it.  Tracy & I have been walking the beach in the mornings... enjoying the surf as our 13 year old puppy runs for the sheer joy of it.  I never tire of the happiness he brings to our lives.

As of a few moments ago, I've restricted access to my blog.  Suffice to say,  my business is what keeps us going and I've finally realized that some of my clients may have thought I was too busy being a care giver to cater to their needs.  Tracy does come first, but our livelihood is extremely important and I've never ever shirked my responsibilities for my clients.  So, I've sent invitations to my blog followers - at least the ones I had email addresses for- to let them know that they will have to log in to access my blog.  I realize this puts another step into the process but it also gives me more ability to write more freely.  This is a personal blog that is evolving and it will now allow more freedom in what I choose to write about....

Tracy has recovered his sense of humor and I am soo thankful for that.  He is very fatigued but has been taking more advantage of our surroundings and even spending a little time in the art shack.

Love you all and here's hoping you'll send a big whopping stream of white light this week as we go to Stanford....

Tuesday, February 11, 2014

Today is Tuesday, February 11th

Here we go again... a week has gone by and I'm playing catch up but I do have a good excuse... life got in the way...

Another very long day at Stanford yesterday...  Dr. Liedtke very gently informed us that T's counts were still too low for chemo and his liver panel was awry too so,  we hope to re-start the cycle next week ( depending upon his counts ).  Penn is waiting on the FDA approval for new patients (who knows how long that will take) and we have an appointment with the transplant folks soon.  It was T's  lucky day tho...  T was due for his lumbar puncture with chemo and he would receive treatment 3 hours later.  Oh boy!  T is my hero... methotrexate injected directly into the spine and our T never complained.  He had to lie still for an hour afterwards and then, we returned to our home... our refuge.   T retreated to bed .. I served him toast & eggs & raspberry mousse ( been experimenting with the recipe .. think I've found the key).  The poor guy had a terrible night and this morning he's eaten oatmeal in bed with the papers while Riley drooled awaiting his share...

Been busy with my biz... thank goodness!  Short sale for David was finally approved yesterday and other clients are starting to get interested again... the interest rates have been very enticing...

We are very social creatures and this enforced isolation is tough but we'll get through it...  we're able to watch movies and now the Olympics which is exciting...

I almost forgot....Sunday was the most amazing day for marine life at the beach!!!  We were walking along in the drizzle when we noticed several blows and then, a tail and then, a nose and we realized - whales!!!  no more than 100 yards from the shore in what appeared to be likely shallow water... someone said she thought it was a mother with a distressed baby... we thought it was a couple adolescents and a baby but we were mesmerized...  what a joy!!! rain and whales!!! enough to satisfy our souls...

Carpe diem!!!

Monday, February 3, 2014

Today is Monday, February 3rd

Another day at Stanford and unfortunately, T's counts were too low and his liver counts too off to allow for the 1st treatment of the 3rd cycle of the protocol.  We learned something today.  Instead of being afraid of complaining, we were told (after we waited almost an hour for labs to be drawn ) that we needed to voice up after 5 min. of waiting... we'll see.  We were able to speak with Michaela (Dr. Liedtke) and she reminded us that this protocol is definitely an intermediate step.... OM goodness.... and that the Penn study is a definite whenever they have gotten approval for a new something? from the FDA and in the meantime, we need to look into a bone marrow transplant.  So, here we go...  T will continue with this protocol until he can start something else ... which we hope and pray will be Penn.

The Super Bowl was a bust.... boring and huge disappointment since expected much more out of Peyton and the boys and I wore orange for nothing... ran out to show a home beforehand to an old friend who will be a client in awhile...

So here we go....  pray for  T's inclusion in the Penn study...