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. 
 

What makes pancreatic cancer so deadly?

I thought you might find this article of interest.  Note it's from August 2008.

NFL great Gene Upshaw passed away suddenly from pancreatic cancer. Oncologist Allyson Ocean explains how the illness felled Upshaw only four days after doctors found it

Gene Upshaw, the executive director of the National Football League Player's Association the union for NFL players died late Wednesday evening of pancreatic cancer while vacationing in California's Lake Tahoe. Doctors diagnosed the 63-year-old Hall of Fame offensive lineman with the disease just four days earlier.

Upshaw was a guard for the Oakland Raiders from 1967 to 1981. He played in seven Pro Bowls and three Super Bowls. He served as head of the NFL player's union for 25 years.

Upshaw's wife, Terri, took him to a hospital on Sunday, August 17th, because he was having trouble breathing. A biopsy revealed, much to everyone's surprise, that he had advanced pancreatic cancer.

In March, actor Patrick Swayze star of the hit 1980s film Dirty Dancing revealed he had been diagnosed with the illness in January. Doctors' reports indicated they had caught his cancer relatively early.

The pancreas secretes hormones and enzymes to digest our fats. One of those hormones is insulin, which prompts the body to use sugar in the blood rather than fat as energy. Its levels are low in diabetic patients, who suffer from abnormally high blood sugar.

Only one fifth of Americans diagnosed with pancreatic cancer survive for a full year, according to the American Cancer Society, and it is the fourth leading cause of cancer death in the country.

How does the disease develop without noticeable symptoms and then kill so quickly?

 ScientificAmerican.com called Allyson Ocean, an oncologist at New York Presbyterian Hospital/Weill Cornell Medical Center, who specializes in gastrointestinal cancers including pancreatic cancer. 

Why does pancreatic cancer kill so quickly?
Pancreatic cancer is typically diagnosed at a late stage because it doesn't cause symptoms until it's too late. Weight loss, abdominal pain, jaundice [a yellowing of the skin due to toxic buildup in the liver] those are the most common symptoms. They usually start after the tumor is a significant size. By then, chances are, it has metastasized.

Only about 10 to 15 percent of pancreatic cancers are diagnosed when they could be considered for surgery. And the prognosis is poor even in patients who do have surgery, because it comes back about 85 percent of the time. At best, 25 to 30 percent of patients are alive five years after surgery.

When doctors do pancreatic cancer surgery, they take out 95 percent of the pancreas, including the tumor, and then they leave a small remnant of the pancreas in there that serves [the insulin-producing] functions.

If a person can live without a fully functional pancreas, then what, ultimately, kills most pancreatic cancer patients?
When most patients die of pancreatic cancer, they die of liver failure from their liver being taken over by tumor. (Johnny has two tumors)

What precludes doctors from performing surgery on late-stage patients like Upshaw?
We don't do surgery if the tumor has already spread outside the pancreas, because there's no survival benefit in removing the tumor. We also sometimes can't do surgery [when the tumor] involves the great blood vessels, the superior mesenteric vein and superior mesenteric artery. Those are the main vessels that come off of the aorta, the main artery in our body. If the tumor is wrapped around those blood vessels, then we can't take it out. (same for Johnny)

Why is this particular cancer so aggressive?
Because of the nature of the tumor cells. They escape the treatments, they hide out, and then they come back. And they grow again and they affect the liver and then they kill people.

What are the biggest risk factors for pancreatic cancer?
The biggest known risk factors are smoking and family history it can be a hereditary disease. Then there are some other more obscure risk factors, such as defects in the anatomy of the pancreas, but that's very rare.

What factors affect how early a person gets diagnosed?
Depending on where the cancer is diagnosed in the pancreas, it can affect how soon it's diagnosed. For instance, if the cancer is in the head of the pancreas, which is close to the common bile duct, and it grows and it causes obstruction of the common bile duct, a patient can get jaundiced. And then they could [show symptoms] sooner than someone whose pancreatic cancer is in another part of the pancreas, like the tail. They would not present with jaundice, so we would not have a clue that there was necessarily anything wrong with them.

What are some of main symptoms as the cancer progresses?
Unexplained weight loss, abdominal pain, nausea, vomiting. Back pain is another one, because the pancreas is very posterior in the body. Back pain is also the most common complaint that patients go to an emergency room for, and most of the time it's just muscle pain it's not pancreatic cancer.

Upshaw's wife brought him to the hospital because he was having trouble breathing. What might have caused that?
It could be for a number of reasons, such as if the disease has spread to the lungs. If he was so run-down from having lost a significant amount of weight, and he was weak and fatigued, he could have had difficulty breathing, too.

Another important thing with pancreatic cancer is that it's one of the cancers that is frequently associated with blood clots. He could have had a blood clot in the lung, called a pulmonary embolism.  Johnny has a blood clot.

What treatments are available if surgery isn't an option?
Chemotherapy and radiation therapy. Sometimes we do both together. We are also using biologic agents now, meaning antibody therapy. There's a drug called Tarceva, which is an antibody [or immune protein] against the growth factor that the tumor cell makes, and so it blocks that growth signal. It's given in combination with [a chemotherapy called] Gemcitabine. In a large randomized clinical trial, [the combination of the two drugs] was shown to improve upon Gemcitabine alone.

Thursday 11th December Stent Issues and Cyberknife

Greetings Friends and Families,
It has been a while since we last posted an update.

A good girlfriend in Chicago sent me a message telling me " You are a warrior be strong".

I have to say Johnny is the Gladiator the Brave Heart with tenacious inner strength,  he keeps fighting.  Johnny is my Gladiator and your Gladiator.

Monday 1st December,  we met with our Oncologist Bobby, only to be told within the first 2 minutes of sitting down Johnny's liver count had  elevated severely over the last three weeks from 1.1 to 1.2 to 1.7 but most shockingly to 7.8.     The sole reason for his yellowing eyes, yellowing skin, veracious itchy skin,  the feeling and taste of toxins within his body and severe discomfort in his stomach.

Come 5pm Monday,  evening,  Johnny was scheduled urgently for  Endoscopic Stenting surgery.

Stenting is the most common palliative treatment for biliary obstruction in un-resectable pancreatic cancer.    His  "metal" stent inserted in July of this year, the tumor was found to be growing half way up through the stent.  Hence the blockage and heavy jaundice.  The "metal" stent cannot be extracted as  it had become embedded as well as blood vessels  wrapped around the stent making themselves mighty comfortable.   Therefore, another stent was inserted, this time plastic.  It's a Stent within a Stent.   A pipe within a pipe.  See image below.  Every two and half months he  has to have Endoscopic Stenting  to have the plastic stent replaced and re-checked for tumor growth inside the stent.

The CA19 cancer markers are up, from 127 - 178 - 348 - 358 and now 2411 a major spike.   The cancer is growing and Chemo is something we have to re-consider.  His two liver tumors are growing considerably and are of concern.   We would like to enjoy the Christmas Season with friends and re-start Chemo January 2015.  But this is only if Bobby is agreeable. 

Wednesday 10th December, we met with Dr. Alexander Gottschalk from UCSF,  a specialist in the CyberKnife field, Radiation Oncology.   "CyberKnife Robotic Radiosurgery System is a non-invasive alternative to surgery for the treatment of both cancerous and  non-cancerous tumors anywhere in the body, including the prostate, lung, brain, spine, liver, pancreas and kidney. The treatment which delivers beams of high dose radiation to tumors with extreme accuracy.  Though its name may conjure images of scalpels and surgery, the CyberKnife treatment involves no cutting.  In fact, the CyberKnife System is the world’s first and only robotic radiosurgery system designed to treat tumors throughout the body non-invasively, unfortunately it is "rarely" approved by medical insurance companies due to the exorbitant costs and relatively short life extension.  There is no promise.

 

Tuesday 16th December,  we shall meet with Bobby to discuss and review the above along with the huge possibility of not being able to qualify due Johnny's body state and ability to recover from both sessions at a time.  Chemo and Radiation  would be a double whammy on Johnny's body.

Johnny is up and about, as much as he can, he does have a lovely healthy appetite, miserably the weight is not piling on,  weight is dismally  down to 127.    No matter how much he eats the cancer takes  it.    The heavy night sweats are still with us, he rotates around the bed clockwise looking for a dryer place,  before another bed sheet change, these can be up to 4 a night, his sleep is interrupted on an hourly basis.   Back up to 18 colorful pills a day along with his two injections for the blood clot.  

Stent with in a Stent

CyberKnife  -  it's a Robot

Fiducial Placement,  depending on the type and location of the tumor,  the team   recommend placement of fiducials which are small gold markers inserted near the tumor  to help identify the exact location of the tumor during treatment. 

Tuesday 11th November

Good evening friends,

 

Today's results with Bobby were positive in retrospect.

His CT Scan results proved to be 98% stable. 

 

Although, there are now two new tumors in his left lung.  The other 100 lesions in his lungs have taken a hefty whack from the chemo, but are without a doubt still there, in limbo mode.   During this limbo mode  we hope, Johnny will be able to take a break. With luck we can enjoy  upcoming holidays without having a need for chemo.

 

As per usual, nothing in our life has gone smooth, a new, extra little twist to the plot.  We can now add to the list "Blood Clot",  in his left jugular.   Extremely lucky to have been found, due to the Doctors sharp eye.  Not critical right now, but if it had not been found,  truly dangerous as blood clots can  stop blood from re-circulating back to the heart. Johnny will now  be injected twice daily with Lovenox for the next unforeseen six months.  A needle to his tummy.  My nursing skills will be still in demand. 

 

P.I.C.C Line was removed today.  Did you know the P.I.C.C Line went into his right arm up to his shoulder, across his chest  to his heart?  Its a tube that runs inside him, about 24 inches long.  When the nurse whipped it out,  it looked like a blood sucking worm all of 2 feet long. 

 

Chemo will be re-started in January 2015 but not at such a fierce level.   Gemcitabine will be the new formula every week for two hours with no portable Chemo Designer bag to take home. 

 

The stent has to be re-evaluated, probably the reason why his eyes and skin are a tad jaundice.  Basically, the stent needs gunk to be removed.  Bit like plumbing really.  Blood work will be done weekly to monitor liver levels.

 

Happy to say the large bowl of pills, are now down to 6 a day!  This is huge coming from 8 pills in the morning and another 8 at night!  Johnny is strong, communicative, eating like a horse.    Night sweats will be a continued pattern due to the cancer, the ritual of nightly bed linen changes along with five soaked shirts a night will continue.  I think I will ask Santa for a new bright red washing and tumble machine!!  Maybe PGE will give me a discount this month!

 

All together this has been a good news day, the cancer is not getting any worse, cancer does come with its side effects, we don't have the hell of chemo but we have the impact of cancer.  Johnny is exhausted, weak limited energy, those nightly sweats, along with constant itchy skin.  

 

From being told he had three months to live it's been over four months, we have surpassed what the doctor(s) predicted, plus it looks good for the next three months.  With a little luck we can keep extending his life. 

 

We have to keep Johnny fat, healthy, infection free but most of all, quality of life and happy.

 

Our Infections specialist told us "Generally, people do not die from Pancreatic Cancer, they die from weakened immune systems, colds, germs, infections, pneumonia, blood clots, malnutrition etc".

   

Let's start planning Thanksgiving, Christmas and New Year.

A message from Johnny’s son - Lee Carter Pye

A message from Johnny’s son: Lee Carter Pye

For those of you who do not know me, I am Johnny’s 33 year old 6’3 strapping lad of a son.  I grew up in the SF Bay Area but for the last few years have lived in Liverpool, England, home of The Beatles, Liverpool Football Club, and the city where my dad was born and bred.

I have been back to visit for the last month or so and spent time with my dad.  It has been bitter sweet.  Great to see my dad, friends, and the city where I left my heart, but not under the best of circumstances.  I’d like to share the ups and downs and paint a picture of the last few weeks, then a little reflection of my thoughts and time here.  I say ‘little’, but I must say I tend to write a LOT, from the heart…

The past month has been a rollercoaster.  I got here October 2^nd, not long after my dad’s last chemo treatment.  When I first saw him, he appeared to be his normal self, less 30 lbs and his abundance of energy that we all know so well.  His energy, enthusiasm, and appetite were all depleted and he was not his normal witty and charming self.

We sat down for a delicious dinner just after I got to the Pye Residence.  My dad could hardly stomach half his dinner and beer.  I know deep down he was trying to be strong and not show his true colors.  But since that first night I could clearly see his energy levels, strength, and appetite improving every day.  I had to tell him more and more not to work so much or lift things.

You can’t tell Johnny Extreme what to do though.  He’s the hardest worker I know, always thinking, always analyzing, always busy, in the office and at home.  I think the hardest thing for him is having a huge list of things on his mind but not having the strength or energy in his mind or body.  I did what I could to be his strength and let his genius mind delegate me, telling him off now and again at home and the store not to do anything except tell me what to do.

My dad’s store, Bentley’s Home Design, on Francisco Blvd, San Rafael (check it out hint hint) has recently been sold to very good people who have been very accommodating and understanding and I know will do my dad proud.  Selling the store has taken a huge load off my dad’s shoulders, one less major thing to worry about.  Definitely not what he planned or wanted to do.  He still has stock in the store including carpets, rugs, etc., so he will continue to sell those through the same business.

Johnny Pye was doing better day by day.  It was the Fleet Week Air Show the weekend of the 11^th/12^th and my dad’s spirits and energy was up!  He jumped on the opportunity to go on a 60-foot yacht to watch the air show.

Things seemed more back to ‘normal’ but within the next day or so my dad got an infection in his chest port.  His temperature was up to 104 degrees, his blood pressure dangerously low down to about 60/40, and next to zero white blood cell count.  He was rushed into the ICU.  The doctors and nurses took good care of him while administering meds and a blood transfusion.  My dad was in a critical state.  He kept fighting and within a day or two began to stabilize.  He had hopes to leave within just a couple days.

Apart from the odd broken bones, I don’t even know if my dad has seen a hospital in his life up until this year.  He doesn’t belong there and doesn’t want to be there.  The doctors held him for close to a week just to monitor him and make sure his blood pressure was stable.  Visiting was very limited and required gloves and a mask as my dad was very susceptible to infection.

Once he returned home his progress was quickly back to normal, eating more than ever, much more energy, and more himself.  Again, I noticed the difference every day.  It is still a volatile situation though.  My dad has a series of home-administered injections every day at the moment, including bowl full of pills.

Michelle has been absolutely fantastic.  The very organized, no B.S., feisty, petite little postage stamp makes sure Johnny gets his pills down him and stuffs him as much as possible.  If he doesn’t like the food in front of him, she will gladly whip up something else.  We’ve even got him on weight gainer protein shakes which he loves!  He’ll be benching more than me in no time!  Even mentioning setting up the Bowflex… yeah dad, you’ve been saying that for 15 years haha.

The past week my dad has bounced back stronger but it is still a very uncertain time.  The next two weeks some major decisions have to be made.  I’m not sure my dad can handle another full-on aggressive treatment again.  It may have to be a combination of a light chemo treatment, local tumor removal, local radiation treatment, etc.  A full scan within the next couple weeks will tell all.  Ultimately it will be a balance of extending and maintaining a good quality of life.

There is no definitive answer.  It seems to be a series of milestones we aim for… his birthday, seeing me, making it through the infection, next is making it through the next treatment or surgery depending what’s best, then Christmas, then into next spring, and hopefully beyond.  No one really knows how long.  My dad is a born and bred scouser so he is a fighter.  He already bounced back even stronger after a big scare.

I’ve never had a major loss or known anyone close being diagnosed with a life threatening or life ending disease.  I don’t quite know how to handle things, I don’t know what to say, I don’t know what to do.  But over the past month I have learned that all my dad really needs and all that really matters is two words: be there.  All he needs is that bit of love and support which gives him encouragement and lifts his spirits.  Whether it’s a text message, email, or stopping by for 5 minutes to say hello, every little bit means a lot.

Things like losing touch or falling out are meaningless in times of health concerns.  Nothing else matters.  In times like these, one starts to realize who their true friends are, those who are there in support through thick and thin.  But being there doesn’t have to mean buying dinner, bringing gifts, or even discussing the situation.

I hardly discussed what my dad’s thoughts were or what he wanted to do.  I could tell all he needed was something positive.  I found just being his son and simply being there for him was all that mattered.  We cheered for the Giants in the World Series, talked about Liverpool soccer, NFL, how my work is going, how my life is in Liverpool, shared some photos from my dad’s rockstar days, helped him with a bit of work, talked about girls, etc.  That’s all he needs.  So if you don’t know what to do or say, don’t even worry about that.  Just talk sports, crack jokes, share stories of the past, just be there.

I can't help but think back about all the good times I’ve had with my dad… camping trips, ski trip to Squaw with mom, knee-board wars, teaching me to be better than him at pool, going to the movies with quick Taco Bell stops, ordering me a plain hamburger... “I just want the bun and meat... it goes bun, meat, bun, that's it” haha.  Those little things are what I miss.  And what makes my dad so special to me.  Sharing those moments and experiences.  Just being my dad.

I have always admired and envied my dad’s witty charm, charisma, intellect, taste for the finer things in life, ambition, and work hard play hard ethic.  No one earned a Johnny Extreme shirt more than him.  I am grateful he has helped me become the man I am.  I am grateful he has always showed me new doors.  I am grateful he pushed me to challenge myself and grow.  I am grateful for him, whether by his side or across the pond.

So I leave the U.S. with a bit of comfort and more optimism seeing my dad at the best I’ve seen him since I got here five weeks ago.  I’m glad I got to spend time with my dad and try to be there for Michelle as well who has a lot on her shoulders.  My dad has always stayed strong, hidden his emotions, and kept his thoughts to himself.  But I know deep down he is proud of me, happy for me to visit for so long, and so thankful for all the love and support from all of you.  I am so thankful for you dad, I love you.

A very special mention should go to Michelle.  She has been there for my dad so much these past few months.  I’m not sure he would’ve made it this long if it wasn’t for her.  She has helped all the way along with my dad’s health, appointments, the business, housework, chef, and mom to two puppies and two kittens, all while still working a job of her own and staying strong and holding herself together for my dad.  She has made things as easy as possible for my dad… the hardest part for my dad being told what to do hah.  I have really become closer to Michelle the past few weeks and can say I am thankful she has been there for my dad and I am proud to call her family.  Thank you Michelle.  Know that I am always here for you too.

The gorgeous inside and out Kavie has also been a saving grace.  As a nurse herself she has been there for support in every way for Michelle and my dad, advising what to expect, and just being the caring genuine person she is.  I can’t thank you enough Kavie.  You are an angel.

Lastly, I have realized over the last month that life is short.  Hug those who mean lots to you, tell those close to you that you love them, and take nothing for granted.  Any one of us at any time could get life changing news to oneself or someone close.  There aren’t always answers but the least you can do is show you care and be there.  Presence goes a long way to lifting spirits.  Please keep the messages coming, they mean a lot to my dad.  He would love to see everyone but a low energy, short visit, relaxed setting is best with no more than one or two people at a time.  He needs his rest, it gives him energy and strength.  Thank you all for your love and support, it means a lot.

Lee