Sunday 22nd February, 2015

Hello Friends and Friends,

 

It has been a while since we last wrote to you.

 

All going as well as can be expected, the chemo is apparently "now" doing it's job.  Stabilized.  The two tumors in his liver have "diminished in size currently measuring 3.2 x 2.6 previously measuring 3.6 x 3.6cm", although the CA19's are still in their thousands but dropping slowly.  The CT Scan is unable to tell us, unfortunately, as to the pancreatic tumor mass which is probably at least ten times in size compared to the small shrinking liver tumors, remember the pancreas is hidden behind the stomach.  All we can tell from the CT records is: "Again, accurate measurement is technically difficult due to the ill-defined margins of this lesion".

 

Johnny wears his many a long slouchy beanie(s) with pride, keeps his head warm and snuggled, even though we are in 75 degrees of sunshine, he is constantly bundled up, many layers to keep him warm and still wearing gloves.   Visually he  looks good, although shrunk in body, a twinkle in his green eyes, but deep inside his stomach, one can here an incredible orchestra!  Orchestra? you might ask,  it's all that grumbling, gurgling and churning around.    Those are the hard days, where he soldiers on mindful of his condition but trying to get on with life.   Grins and bears it.

 

Unfortunately, there will be no long haul international flights, no remote island, no Bora Bora no Amalfi Coast or exotic Caribbean  cruise.  We will explore the wonders of the coast line and sample a few fine wines in Napa, but more importantly breathing in the magnificent  views that we are fortunate to have here on the North Coast. With international travel, his White Blood Count being so volatile, Johnny will undoubtedly catch something.  His White Blood Count is great for chemo sessions, but not great for picking up dirty germs and bugs. 

 

Although for those of you that know Johnny, are aware of his stubbornness.  "What about a private plane?" he asks, we can go to Malibu for dinner watch the sun set. 

 

Johnny has outlived what the doctors  said, "3-6 months".   We are now beginning our ninth month.   An emotional, heartache of  nine months,  daily rollercoasters, cycles of ups and down, sleep no sleep, heavy sweats, no sweats, pain no pain, eating not eating, severe sepsis, ICU,  blood clots, medication, daily injections, twice daily smarties (medication), hospital appointments, prodding, poking, endoscopic surgery, more stent work, more blood work, more needles, doctors, nurses, waiting rooms, one hospital to another hospital, possible clinical trials, smiles and tears, and the endless paperwork that comes with it.  A RAW and emotional time, not just for Johnny and I, but for some of our closest friends who are there for us and experiencing the path Johnny is taking. 

Bubble & Squeak have been an incredible outlet for Johnny.  They give him energy, a smile a deep happiness from within. The greeting ritual of tails and butt's wagging energetically, along with the odd howl of sing-song of welcome.  And yes, Bubble & Squeak most certainly do sing and howl.  Unconditional love and acceptance.   

Thankful for our close friends who have reached out to Johnny and sending him emails.  Even more thankful to hear and see friends who came off our radar and are now firmly back on it. 

Keep sending Johnny, love and hugs.

Johnny with his two "Musketeers" - having known them for over twenty years.

Johnny with close friends first time out in a while @ Super Bowl.