Saturday 27th June, 2015

A week of our Clinical Trial.

UCSF Helen Diller Family, Comprehensive Cancer Center, Mission Bay. 
Three full days we have spent in the city.  

I can honestly say I have never spent so much time on the road driving in and out of the city.  And, of course, my driving is not quite as good as Johnny's.  Not a time to have a driving argument.  Once upon a time heading into the city was for fun.   Now it’s a need, a necessity and requirement. 

We cannot "fib" to you, it has been strenuous, since no chemo in May.  Johnny's weight has deteriorated significantly, I have lost count of the amount of butter, eggs full fat milk, cream added to his food. Weight gain is significant.  It's important.  The body requires fuel to fight.  Johnny's loss of appetite, requires me to become more  creative with meals. Tiny morsels at time it can take 40 minutes to eat a meal and then to not complete his plate.  With profuse apologies he pushes it away.  Its OK – eat what can love.  There is nothing he desires to eat.  The pain continues, to beat him down.   The narcotics, help relieve the pain, he has to take far too many, which in this case, leaves him befuddled with speech, slurry of words, enunciation, and absent mindedness. Over medication comes to mind, to which the doctor  lowered the dosage, having never met a patient on such a high dosage.  Johnny slowly moves, shambles around the house,  holding his stomach, with a brave face.  I wince, hard to see a strong man, my man, my husband my soul-mate, punished, whipped down to his weakest.   It is as though he is being hounded by a  masked executioner.  Johnny continues to amaze, he fights to live life.  He tells me he does not feel as though he has one foot in the grave, just yet.  

UCSF  Mission Bay, driving right through the city, chock-a-block with traffic, all of 90 minutes, is  challenging, to say the least.  Time of day, morning,  does not help.  But,  UCSF, a new campus,  clean modern and slick is exhilarating,  fascinating, new technology, dynamics of the doctors and nurses, swift check in questions, strong questions in need of the right answer to ensure Johnny is able to participate in the trial.  The desire to ensure Johnny is "comfortable". 

Tuesday 23rd June: Week 1-Day 1 - Doctors Consult

 Blood work is drawn, three tablespoons of it, in order to evaluate his general health.  We meet Dr. Tom Weber, who gently prods Johnny with questions, listening patiently taking notes.  He took his time, no rushed appointment, it was all about Johnny.  Caring and understanding.  One of the questions he asked "how are you feeling, are you up and about or lying in bed"?  to which I pipped in saying "are you kidding he has put in two skylights,  hardwood flooring, created a front courtyard, paved, with double open doors, new roof, new bathroom and now he wants to have new kitchen cabinets and change the granite, oh and yesterday he is hanging the hammock and a washing line".  Johnny proceeds to get his iPad out and show the doctor photographs, whom is suitably impressed.  "Well what do you do when you are not creating a home"?, "Oh I have a racetrack and race cars around the house".    Dr. Tom Weber says well in that case we are more than good to go, with a nod to the nurse.  I asked what did he mean?  Well,   "The last patient I had to turn away as he did not qualify for a clinical trial,  he was not active enough, he was in bed all day".   So my friends, that have seen our Johnny of late, it is a good thing Johnny is doing what he wants to, in order to keep his mind activated and stimulated.   Creating a beautiful home for me, the puppies and kitties.

Tuesday 23rd June: Week 1-Day 1 

Cyclophosphamide. Chemotherapy, a low dosage. It works together with the GVAX Pancreas Vaccine, along with a nice bag of saline to hydrate Johnny.  Side effects, fever, sweating,  we were up most of the night wiping him down changing the sheets.  Not much pain but still with some.  As he sleeps before our next appointment, (Wednesday), I checked in on him, curled up in a fetal position, bundled up in the white fluffy duvet, puppies buried within, wrapping themselves around him.  Rest my darling rest.  

Wednesday 24th June: Week 1-Day 2

GVAX Pancreas Vaccine.   Six point of injection sites are used: four upon each upper thigh, and two upon his left arm.   The injection sites requires the main points to be numbed for 45 minutes before injecting.  Once injected, the GVAX Pancreas Vaccine  sits under the skin surface a bit like the TBD injections we had as a kid in Great Briton.  The vaccine is a bubble of fluid and  disperses throughout the body gently.  We hope without any reaction.  No redness no itchiness, no scratching no swelling.   

Friday 26th June: Week 1-Day 3

Return to UCSF for evaluation and review any injection site reactions.    Currently there are none, thankfully, but we await the doctors consult. Our next appointment will be July 16th and 17th, for a repeat performance of the above and the CRS-207 drug.  Each day visit has been at least 5 hours. 

"In this randomized controlled Phase 2a clinical trial the combination of "CRS-207 with GVAX Pancreas",  demonstrated a statistical significant improvement".  

With love – Michelle & Johnny

Tuesday 16th June, 2015 - Clinical Trial

Good afternoon,
Friends and Family,

Today Dr. Andrew Co, from UCSF Cancer, called and confirmed:
Johnny has been randomized into "ARM A" for the clinical trial.
Good news this means he will receive the following: this is the main drug we wanted him to be on. 

Cyclophosphamide/GVAX Pancreas vaccine and CRS-207 over the following weeks:
2 doses of Cyclophosphamide and GVAX Pancreas vaccine, three weeks apart;
4 doses of CRS-207, 3 weeks apart;
total of 80 patients includes our Johnny
this trial is a total of 20 weeks.  Dr. Andrew Co. hopes this will help Johnny.   Know that this is not a cure it's helping Johnny. 
 
As a reminder:
GVAX Pancreas Vaccine, sponsored by Aduro Biotech. Only 240 people will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

Johnny has been having a miserable time, we both have of recent. 
Please keep sending you love and emails: johnnypye@yahoo.com he does enjoy reading them.
Regards
Michelle & Johnny

Thursday 11th June, 2015

Hello Friends and Family.

Thursday 11^th June, 8.45am, I am pulling into the office, car park.   UCSF Cancer hospital, pop up on my caller ID.  Sara, I ask “do you have a magic wand for me today, has my appointment for Johnny been pulled forward?”  “Yes I do have a magic wand.  Today at 11.45am can you do it”?  “Yes we can”.  

I run into the office send an email to my two bosses explaining the situation and run back to the car. Home bound to pick up Johnny, thinking to myself, I am going to have to push him, (it takes Johnny a long time to get ready, he potters, ponders and wanders), ready for the drive into the city to UCSF Helen Diller Cancer Center – Mission Bay.  All of a 90 minute drive.

Dr. Andrew Co and his coordinator, examine Johnny, along with a list of questions, in order to gain more background on Johnny.  More blood work and cardio examinations.  CT Scan Monday 15^th June, ready for UCSF to review on the 17^th June, for possible submission to commence the trial on Tuesday 23^rd June.   Remember, from my previous blog, (as per below), trials are strict, strict criteria.  From our last CT Scan in May, he had trace amounts of fluid in his abdomen.  Dr. Co is adamant, no acceptance into the trial if he has fluid.  It can’t be drained.  No other trials will accept Johnny if this is the case.  The other trial is a PARP Inhibitor Trial, but this works if Johnny has a certain “BRCA mutated tumor”.  The other alternative would be to go back on the first round of chemo that really put him through hell.  We both know he  can’t do this emotionally and physically.

To date, friends and family, Johnny has been in significant pain, it’s constant, always there, the pain never leaves, starts just below inside his rib cage and drops down past his belly button.  Sometimes moving towards the back.  It’s a typical pancreatic pain.  Always there, a sharp stabbing bayonet cutting, twisting and turning.  His weight has dropped to 125.  My Johnny is a skeleton of skin.  Intake of pain medications to relieve the pain has been critical of late.  He awakes me at 2am telling me he is in much pain, distress, in need of medication and comfort.  Level of pain these days is a 6-7.   It’s the cancer we are told.   The emotions, sadness, along with a feeling of “pure acceptance”, I see upon him is dire.  The pain, anguish, heartbreak of possibly leaving us, knowing he probably does not have long, he is trying to mentally put things into perspective.   Today was tough, exhausting, we are home, I put him in a lovely bubble bath, wash him, caress him, the puppies can tell, their master is really sick, they come to sit and watch over Johnny, he sees them and the tears fall, they drop, splash upon Squeaks nose, he licks his master's salty tears, as they fall spilling into the bubbles, as I bath  my darling Johnny, reassuring it will be OK, I am here with you, Bubble n Squeak are here.  Johnny is crushed, wounded, lost, empty and dejected.   We are at a loss.  

“GVAX Pancreas Vaccine, sponsored by Aduro Biotech. Only 240 people will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

With participation within a trial, it is accompanied by a 43-page consensus document, criteria, screen procedures and pre requisite requirements. A computer program will incorporate all of his data and place Johnny in one of the three “Treatment ARM(s)”.  It’s randomized, neither Johnny nor our doctor can dictate or know which Treatment ARM Johnny will be selected for.

Until then friends, we await for Dr Andrew Co’s approval or not.

Please send Johnny your love your funny stories what has been happening with you in your life. 

His email: johnnypye@yahoo.com

Sunday 7th June, 2015

Hello Friends and Family.

Tuesday 19^th May, Bobbie Head's office told us, our chemo regime of Abraxane and Gemcitabine is no longer working.  From examinations of the CT Scan the week before, the cancer has spread to Johnny's lungs. “Innumerable bilateral pulmonary cavities in his lungs which have increased significantly”.  “The lung walls have thickened, along with accumulation of fluid in his abdomen”.  Johnny's breathing is laborious, considerably so.

Chemo has been hell!  But without the chemo, Johnny would not be here.  The chemo was our army, killing the cancer on our behalf.  And, now with no more chemo there are no soldiers to fight on our behalf.  As, Johnny become weaker the cancer becomes stronger in the body.

No more chemo.  That is it.  Done.  The news was given with the greatest care, respect and sadness.  Dr. Lucas, head of Marin Cancer Care, was sincere with her kind deliverance.  

Again, not the news we wanted to hear.  Deep down Johnny knew, his body has changed, incredulous drop in weight, the slowest of movements, the feeling of cancer, the return of the heavy nightly sweats, the return of seven shirts a night, the numerous bed linen changes.   I awake at the slightest movement of Johnny, I watch how he awakes during the night, removes a shirt, wipes his body down with a towel only to put on a fresh shirt.  This is all done eyes closed, in mid, deep, sleep.   The pain has increased ten fold, dosage of medication, doubled and intake doubled/tripled.

What next?

Clinical Trial at UCSF.  

What is a Clinical Trial?  What does this mean you might ask?  It’s a study.   There are currently two clinical trials.  One we know of, is GVAX Pancreas Vaccine, sponsored by Aduro Biotech.  Only 240 people nationwide will be enrolled, from different participation centers. The GVAX pancreas vaccine is made from other patient’s pancreatic cancer cells.  The cells were changed in a laboratory to make a protein called GM-CSF.  This is done by putting the GM-CSF gene into the pancreatic cells.  A gene is a piece of protein (DNA) with a message on it that tells a cell to make something.  In this case the message is to make more GM-CSF than it would normally make.  GM-CSF helps to activate the immune systems cells to recognize and attack the cancer cells.  Because a gene was inserted into the cells of the other patient’s cancer cells to make this vaccine it is therefore called “gene therapy”.

With participation within a trial, it is accompanied by a 43-page consensus document, criteria, screen procedures and pre requisite requirements. A computer program will incorporate all of his data and place Johnny in one of the three “Treatment ARM(s)”.  It is randomized, neither Johnny or our doctor can dictate or know which Treatment ARM Johnny will be selected for.

Our appointment with Dr Andrew Ko at UCSF is scheduled for Monday 15^th June.   If not earlier.

Johnny wanted to go away.  Memorial Weekend.  I was set against, foreseeing health issues and struggles. But I have to allow Johnny to be able to live.  Cabo and sunshine beckoned us, shared with good strong solid friends.  Moments, cherished, building another layer of memories.  Our friends understand Johnny, understand his pain, his struggle.  They have shared the path together with Johnny.  Their patience, love and care makes Johnny feel loved.  Choosing carefully restaurants Johnny would like, only to change the timing for Johnny at a moments notice in order for Johnny to rest more.  Chilled moments poolside, cocktails and laughter.  For one split second it was a normal day.  Holidaying with friends.

United Airlines were superb. We had wheelchair access throughout the air trip, pre-boarding with excellent seats.   Once landed in Cabo, a turbo charged wheelchair met us at the gangway.  Whilst seated, Johnny looked down at the ground, before looking up at me saying "Is this not for old people"?  "Sit and relax honey" was my response.  We bypassed five plane loads at customs,  immigrations forms were completed on our behalf and in a taxi headed to our hotel.  From what could have been a 90-minute wait at immigration, turned into a 10-minute trip, from landing, immigration and taxi.  Superb.   No wait, no line, no silly questions.  All paperwork was done for us,  out and back to San Francisco. Lovely.  

Until then friends, we await Monday 15^th June at UCSF.

Please send Johnny your love your funny stories what has been happening with you
He would love to hear from you.  His email: johnnypye@yahoo.com

With love and tears

Michelle & Johnny

Five years ago tomorrow - 5th June, 2010 I married my darling Johnny.  It took a while, but he finally put a ring on it!  Johnny you are my true love, my best friend, my inner sanctuary, my husband my darling Mr. BooBoo.   

You "complete" me, through and through.    

Please raise a glass and toast to Mr & Mrs Johnny Pye.

Our oncologist has informed us that the chemo is not working.

Our hope is that his body will pass the criteria for a clinical trial.

It is now

Johnny vs Cancer

The final frontier 

Monday 4th May - The Magic Number

Hello friends and family,
Apologies - for not taking the time to write to you.

Johnny is doing incredibly well, given his current health.
Two more regimes of chemo to come - one tomorrow and the following week.  CT Scan scheduled for the middle of May for further results. 

We are still with limited energy.  Bursts of enthusiasm are suddenly hit with a "I need to lie down". 
Long sleep in's are a must, every day should  be a Sunday sleep in for him.
His love affair with a Sunday Roast Chicken is over - chicken currently tastes metallic, no matter which way I cook the chicken it is just not appealing to his palette.   

There is a magic number for the CA19's it's "35". 
That is our aim.  We would like to get to 35, but only if Johnny's body can handle it.
A couple of weeks ago the number was in it's thousands.
Last week the number was 241.
Tomorrow we shall find out if his current CA19 has dropped  or climbed. 

The Rolling Hills of Napa 

Tuesday 24th March, 2015

 

Hello Friends and Friends,  

Tuesday 24th March was our chemo day. Johnny's cancer markers,  CA19's have taken a phenomenal  drop to  335.     This number was the initial  CA19 marker number he was diagnosed with last  4th July, 2014.  Remember, only a couple of weeks we were in the thousands, remember, we were told "chemo is not working".  We remembered, and now we are down to 335. 

 

We shall surely see a 4th July, 2015  party this year with more energy and gusto of celebration, we hope.

 

The chemo is working, it is killing the "sensitive" cancer cells which cannot fight the current  chemo regime, but, when they grow back, the cancer cells will be more resistant to the chemo. 

Of course we are euphoric, well who wouldn't be?  Nevertheless, we  remain cautious, as the body and cancer can swing, surely at moments notice. What comes with good news, comes with the servings of ramifications of another day of chemo. Johnny told me yesterday his body felt like a "nuclear waste dump",  the fermentation of toxins in his body, mouth and taste, the faint odor on his skin and clothing.    His insides, yet again, charged up, relentlessly churned around after a morning of chemo.  Johnny  forces himself to live through this moment of loathing, knowing the chemo is keeping him alive and well, for the most part.    It takes Johnny at least three days plus to get over chemo, translucent skin of a ghost,  a visual of fragileness, lethargy and emotions despondent.   Chemo is the slayer of good and bad.   Chemo Rest day(s) are important, Johnny is at home with the puppies, movie catch up, sleeping and pottering around the house.  It's good for him. To stop pause wait and rest.

We took a week off.  Stinson Beach was glorious, weather, supremely kind to us, the ocean gave us company,  an  audience of whales and sharks close to the shore line. How wonderful - Mother Nature at her best and finest.  Is this a sign?

We had the puppies with us, Squeak was our video camera-dog-man, strapped to his  slight body, a GoPro Camera, one would squeal at the delights, of a dog's vantage point of view.  His sister Bubble every now and then came to sniff and kiss  the camera and pounce off rolling into anything dead, a crab, snail or jellyfish, or just sniff the odd bottom.  Yuck.   Bubble and Squeak gave us the laughter and release that we needed.  The tail end of our week we spent in Napa,  a gastronomic food assault on the stomach and palate, filled with incredible food  tastings washed down with incredulous big fat reds.   Sharing our Napa time, creating fond memories  for Johnny.  An "Epic" Weekend, we were told. Lovely.  It helped having our friends share the Napa weekend, it allowed us to lean upon them, unconditionally, to share every moment from morning until night.  An insight for our friends to how our Johnny copes with every day life.  To how he struggles getting up in the morning, the regular intake of medication, the constant reassurance of are you OK, how can we help you.  They were so good to us.  "Take your time - no rush" "chill. It's all good".

 

Week of 30th March, brings  more chemo Tuesday 31st March, along with an early rise for surgery Thursday 2nd April,  for the stent sleeve replacement.  The stent is keeping the bile duct open.  The replacement must be done not only to be cleaned,  but to remove debris and tumor which is building up inside the stent, along with a possible cause of infection.

Below are some photos for you we share of our Johnny being out and  about.
Please, keep sending Johnny, my  BooBoo emails johnnypye@yahoo.com, stories, chatty stories, or the odd phone call.  Remember he tires easily so talking on the phone is hard so we keep it at minimum.  If you want to come and visit Johnny, of course, we welcome you into our home.

We thank our friends dearly, for taking Johnny out, stopping by the house for a fantastic boat sunset cruise, closing off the end of the day, ensuring Johnny is happy and content, our friend the one armed bandit managed to steer a large hefty boat one handed to ensure Johnny is comfortable and happy.

With love
Michelle & Johnny



Taken by Squeak via GoPro



 



 

The Mirror . . . . . .

Over sushi this evening, Johnny tells me "Little one, today is the first time I "really feel the cancer inside me". " I don't feel right or that good", I can't explain it he says.

 

My unagi hovers before my drooling mouth, now hesitant at what more he is to tell me, as Johnny tells me how sad, emotional and tired  he is, the knot in his tummy, the pain,  the dread of what is coming.  The cancer, he feels it, the toxin in his body.  The daily grind inside his tummy or shall we say the orchestra.  The tears come, they roll furiously, large pear drops of tears, now pouring down, both of us now, the waiter he hovers, unsure, watches and disappears swiftly.  How Johnny  hates seeing himself in the mirror as he gets dressed for the day or evening.  To push himself to wear nice clothes, a nice pair of trousers, (but, only to have to tighten with a belt on the last notch, but not before he has added another notch), a shirt with a warm snugly jacket, and a smart pair of Italian shoes,  topping it off with a slouchy beanie does not seem fashionable, along with the constant accessory  of woolen gloves, even in 75 degrees of heat.

 

Looking at  his reflection in the mirror is a reminder of now and what more is to come, and not the  memory of how he used to be.   Men do groom, they do take the greatest care in shaving, the quick slap of gel to the hair, with a splash of aftershave scent.  Lovely.  My Johnny, too, took pride in getting dressed.  Smart and dapper.  It was wonderful to walk into a restaurant with Johnny, holding his hand as I look up to him with pride. 

 

Cancer is taking its toll on Johnny, his wedding ring frequently slips off, from the loss of weight and his  cold tingly fingers.  The translucency of his pale skin, the red rawness around his eyes, and now the loss of is blond locks.    Today his level of energy is No 4.  This is weak, no strength.  Oh how my darling do you push yourself, where do you pull that inner strength from. 

 

We are into March and we wonder what is to come for us. 

 

We plan to take a break go to the beach, with the puppies, take time out for us, "to have and to hold", we indeed shall.  "To love and  to cherish", indeed we shall, "in sickness and health", we shall.   On the tail end we will spend shared moments in Napa with some good solid friends.  Our friends, wife, she tells me "your hearts will always be bound, the love you share is rare". 

 

In all relationships, we all give our partner an endearing pet name.  For those of you that know us, love us and read this blog, know that Johnny is my BooBoo and I am his BooBette.  Haha I am sure you smiled right there my reader friends.

 

The five photos below are for you my darling BooBoo - I love and truly adore you.

 

Johnny & Michelle - Married upon Yacht Lady - 5th June 2010

 

Yacht Lady - A beautiful moment

A night out on the tiles in the city of San Francisco - 2007

Happy Times - 2003

Our Caviar & Champagne Party - 2006

 

 

 

 

Tuesday 24th February

Friends and Friends,

 

It's Chemo Day today and we have had some good news,  Johnny's CA19's (cancer markers), are down from: 1,843  to 1,222 and as of today 618.  A whopping dollop of a drop.  The chemo is killing all the sensitive cancer cells.  This is extremely good, good news.  Today is a great day.

 

Although with the good comes the bad.  His Platelet's are low and White Blood Counts are low.  So our chemo dosage today will be halved,  and he will need to have a Neupogen   shot tomorrow.  "Neupogen stimulates the blood system (bone marrow), which gives the body a massive boost to  the body, to make white blood cells, to be able to prevent, fight off any infections should they arise during  the cancer treatment".

 

So raise your glass or your mug of tea and toast "today is a good day for Johnny".

 

Johnny & Michelle  

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.

Tuesday 3rd February, 2015

Friends and Friends,

 

The chemo is not working we are told today, no more chemo.  No more wretched regimes of chemo.

The cancer is growing the chemo cannot fight the cancer,  the pancreatic cancer.  Its just not working. 

 

Shocked we look at each other. 

 

Tomorrow we have a CT Scan for complete results but our CA/19's are now in their thousands.  They should be less than 100.  Odd that it is, Johnny and I have had a fabulous 10 days, he has been eating, no pain, we were up and flying oblivious that he  had cancer.   Oblivion helps us, denial a bubble? 

 

My eyes are red raw, the tears tumble with emptiness that envelopes me, this afternoon one is  sad, at a loss and lonely, I  feel  tremendous, heartache,  pain, distraught, but how can I be so selfish? it's my husband my darling Johnny, his health is in rapid decline.  His body is so very sick, I cannot be weak, I have to be strong, resilient to all, to support him be that pillar of strength that warrior in me that he needs.

 

But there comes a time when the barriers break, the waves are crashing and now my inners walls are in ruination. I feel I cannot cope, I want to hide, bury myself,  deep within the blankets of fluffy darkness, but I can't, I have to be strong for my darling Johnny. To be alone, with no husband, friend, no partner no lover no partner no laughter, it's coming the darkness.

 

Remember, to please send Johnny your love and kind words, a video, a laughter, a joke a memory a story.  It makes him feel alive and know that you do care and are sending him wishes and thoughts.  johnnypye@yahoo.com

 

 

With love

Michelle & Johnny

 

 

 

Monday 26th January, 2015

Greetings,

Well my darling Johnny is still  here! 

And we have February 2015 just around the corner!  Joy oh Joy.

Given the doctors gave him three months last July 2014 to live,  told Johnny to get his life in order, he has so  defied all.  The strong support from you, our friends, the kind and honest phone calls the emails, taking Johnny out for those wonderful  boat cruises the gatherings and invites for supper, the lunches and most of all your constant kind friendship.  We have all strived to keep Johnny's motivation and moral strong.  

Johnny told me over Christmas, "I had envisioned my passing to be from something far extreme from a sporting accident off Mont Blanc, taking a sharp turn on a waterski slalom here on the lagoon or trekking in the remotest parts of India. But not from Pancreatic Stage 4 Cancer".  "I am a logical man, I analyze everything, I picture everything in my mind, a vision a story.  Life is a story picturing me with cancer was not part of the fairytale, I wanted to give you  Michelle".  That night and many nights after I cried and cried, bawled my eyes out.   "Little One we were supposed to grow old together" he said.

 

Our   new regime of chemo for Johnny is  Abraxaine and Gembitcine,  given via a drip into his vein.  No more chest ports.   Side affects not as brutal, Johnny is able to bounce back within a few days.  Not as harsh as the previous regime.   Although with Johnny's immune system, we still have to protect.  Last week  Johnny's WBC (White Blood Count), was too low, three daily  injections of "Neupogen" were administered.  Neupogen stimulates the blood system (bone marrow), which gives the body a massive boost to  the body, to make white blood cells, to be able to prevent, fight off any infections should they arise during  the cancer treatment.  Chemo regime is   three weeks on one week off.  It is so nice not to have to go the Marin Cancer Centre for a week.  The feeling of yuck and turmoil inside my body as we walk in, let alone Johnny's emotional feelings, I watch every week as he sits in the doctors office, as part of the protocol  before each chemo session.  A read out of his weekly "Lab Results", "Temperature - Check",   "Blood Pressure - Check", "Weight - Check".  The nurse repeats the results out loud, looking towards me as I detail all information given,  into my "Health Diary" for Johnny.  She knows I want to know every scrawny-skinny detail.

We rarely go out, as he still has a short window of energy, sometimes to think and process takes time, the mornings are the hardest. It takes Johnny a long time to get going, waking up with pain in his tummy, exhausted from the night sweats, the constant linen changes, as he sits on the couch with the puppies staring out onto the lagoon,  nervously I watch him, monitor him, give him the appropriate medication that he requires, the injection for his blood clot, all on a tray with an assortment of small breakfast dishes of  choice.  Keeping him warm reassured and loved. 

 

Johnny's bones are cold, his hands, finger-tips are always cold to the touch, he has to wear several layers of clothing and now gloves.  Whereupon before he was sick Johnny was my hot water bottle my radiator of heat!

 

With this chemo Johnny will undoubtedly lose his golden locks. I bought six fabulous slouchy beanies all of different textures and colors.  "Little One", he asks "why can't you just buy one" he asks, "well it's like buying shoes, you buy one pair you have to buy another".  Hah I need to get him some woolen/leather gloves too.

One of the many hardest things we struggle with, is eating.  We all chew rather too quickly, schnuck our food down probably a little too quickly, don't we?   We drink fluids, glugging so, in a refreshing way.  We sip our fine wines, and allow to travel down our throat setting off our palettes with the wonderful  mélange  of flavors.   With Johnny, it's painful, excruciating, agonizing to watch, he has to have  small platefuls of food, tiny baby forkfuls of food, he  chews and chews, slowly, then chews again and chews again, slowly, in order that he can swallow easily.  The thought of eating is not something he relishes, he actually grimaces about eating, let alone all the colorful pills he has to swallow.     We used to be such food snobs, dining at wonderful restaurants, wine tasting with divine food pairings.  And now . . . . . .

 

The intake of his pain medication has increased significantly of late.  We do our utmost to stay on top of the pain beat the pain any sign of pain. 

 

Johnny has been busy - not busy in the way people say "take a trip" "sell up" "go travel".  "Go do what you want to do".  "Go Live"   To know Johnny, you have to    understand, he has travelled around the world,  lived in many remote parts of the world, several - several times over.  Who can say they drove a truck through Iran in the 70's who can say they rode bareback camel in the desert, trekked through the Himalayans and so much more.  Johnny will tell you himself when he writes the next blog.  What is Johnny  busy with you ask -  the final finishing's and completion of our home.  

 

Please keep up with the emails johnnypye@yahoo.com or phone calls, he does enjoy hearing from you, albeit in small energy doses. 

Friday 2nd January, 2015

Greetings and Happy New Year to you for 2015.
Be Healthy and Happy.

Tuesday 30th December: CyberKnife: Johnny had his fiducial marker installed in his liver.  Early kick start to the day at UCSF, long day but all went swimmingly.  Now the marker has to settle. But, before we do any CyberKnife, we have to start a new regime of Chemo!   Initially, we were told CyberKnife then Chemo but now the plans have changed. 

 

Both Dr. Gottschalk and  Bobbi Head's, new plan is  "place the fiducials", then start new chemo, saving radiosurgery for the targeted treatment after the chemo has reduced his disease as much as possible.    The new chemo regime will start  Tuesday 6th January, Gemcitabine / Abraxane. 

Abraxane works by interfering with the ability of cancer cells to divide. Gemzar works by preventing cells from making DNA and RNA, which stops cell growth and causes the cells to die.

 

Johnny is extremely tired, due to the tumors, he has cycles, of  energy to zero energy.   We spent a lovely low key Christmas and New Year together.  Thankfully Johnny still has a fabulous appetite,  hoping this healthy appetite will continue during the wretched chemo. 

Santa Claus - CyberKnife UPDATED

Greetings,

Merry Christmas / Happy Holidays to you.

Our Medical Insurance Company approved our procedure for Johnny to have the CyberKnife treatment to his two liver tumors.  The liver tumors are of great concern now due to their growing in size.  Whilst having  treatment they will also look at the tumor around his stent, pancreas and lungs.  

This is certainly wonderful news for us.  To be approved, due to Johnny's complex situation.

We have our first appointment for his Fiducial Placement of Gold Nuggets on Tuesday 30th December, 2014. 

 

Below to help you understand CyberKnife and to allow you to understand what Johnny's new steps are,  I have written a summary - well a long summary sorry, as it is so incredibly complicated.  I hope the images help you understand as you follow the summary.

We will still need to have our new Chemo regime but this will happen after the Cyberkbife.  

Whilst reading and understanding CyberKnife, I am blown away to find that the medical field and technology has moved on masterful leaps and bounds.  

Treating liver cancer with radiation therapy is a challenge because liver tumors move with respiration.  In addition the tissue surrounding the liver tumors is very sensitive and can be damaged easily.  The CyberKnife Radiosurgery System is able to deliver very high doses of radiation to both primary and metastatic liver tumors with extreme accuracy. Working in conjunction with the CyberKnife System is the Synchrony Respiratory Tracking System, which enables the radiation beam to track tumor movement in real time and allows Johnnys to breathe normally during the treatment sessions. With the CyberKnife System, doctors can zero in on a moving target – the liver tumor – and irradiate it without harming the healthy surrounding tissue. As a result, the CyberKnife treatment will be more comfortable for Johnny, radiation is delivered accurately and treatments can be completed in one to five sessions.

The CyberKnife process involves four steps:

1. Fiducial placement (might need a bodyguard - don't want his gold to get nicked!
2. Set-up and CT imaging
3. Treatment planning
4. CyberKnife treatment

Fiducial Placement of Gold Nuggets: Johnny is scheduled Tuesday 30th December, for a short  procedure in which three to six fiducials tiny gold seeds each about the size of a grain of rice  are inserted into and around the liver tumor using CT guidance, ultrasound or via a camera that is passed through the mouth into the stomach and small intestine. The CyberKnife System uses those fiducial markers as "reference points" to identify the exact location of the tumor during treatment. Once fiducials are implanted, we have to wait one week before CyberKnife treatment planning can begin to ensure that fiducial movement has stabilized.

During set-up and imaging: Johnny will be fitted for a custom body cradle, which is designed to help keep him more comfortable to ensure consistent positioning for both imaging and treatment.  Johnny  will be fitted with a special Synchrony vest, which is worn during CyberKnife treatment and enables the robot to correlate chest motion and breathing patterns with the tumor position. The data generated with the vest allows the CyberKnife robot to precisely follow the tumor’s motion as it delivers "each beam of radiation", ensuring safe and accurate radiation delivery.

Whilst wearing the vest and positioned in his  cradle,  Johnny  will undergo a series of CT imaging studies, which will enable the CyberKnife team to determine the exact size, shape and location of the tumor. A CT scan will be necessary to fully visualize the tumor, liver and nearby anatomy. 

Next a treatment plan:  specifically designed by a medical physicist in conjunction with our doctors.  During treatment planning, the imaging data is downloaded into the CyberKnife System’s software. The medical team determines the size of the area being targeted by radiation and the radiation dosage, as well as identifying critical structures where radiation should be minimized.

 

Dr. Alex Gottschalk, may choose to deliver the liver cancer treatment in one session, or stage it over several days.  Note liver cancer treatments are typically completed within one week.

Time for treatment: Johnny will be asked to put on this Synchrony vest and lie on his custom body cradle. The radiation therapist will ensure the vest is properly adjusted and Johnny is positioned correctly on the treatment couch.

As treatment begins, the location of the liver tumor will be tracked and detected continually as Johnny breathes normally. The medical team will be watching every step of the way as the CyberKnife System tracks  Johnny’s liver tumor as it moves, and safely and precisely delivers radiation to it.

The CyberKnife System’s computer-controlled robot will move around  Johnny’s body to various locations from which it will deliver radiation. At each position, the robot will stop. Then, special software will determine precisely where the radiation should be delivered by correlating the location of the tumor using digital images of the fiducials and information from the Synchrony vest. The CyberKnife’s robotic arm will adjust the radiation source automatically, to follow the liver tumor as it moves.

 

Once treatment is complete, Johnny should be able to quickly return normal life.   Although we will will not know if he will need the full five series of treatments as determined by Dr Alex Gottschalk. 

We are  fully aware that his tumors will not all  disappear. Doctors will monitor the outcome in the months following Johnny’s treatment through physical exams, blood tests and imaging techniques, such as CT scans.