Friday, August 29, 2014

What a week . . . . .

Some of us in life  have our own little routines and schedules that we like and enjoy.   Every now and then something changes that routine, something small or big, but all cope, do we not?  It could be a gentle hiccup in our routine or a gigantic snowball coming down at one full force.  One wonders why things happen good or bad, one thinks how did I just not see this coming?  

If we all could have that wonderful exotic gypsy looking across at us with her smile and her golden ball predicting one's future I am sure some of us would be truly grateful.  Well,  we at the "Pye Residence" sure as hell could have done with a gypsy crystal ball this week.

This week;

  • Saturday - Bubble had the Squirts; 
  • Monday - Dragonfly had Caustic Poisoning; another vet visit, 
  • Tuesday - Johnny had Chemo Hell Day;
  • Wednesday - Johnny had Chemo Hell Day continued;
  • Wednesday - Michelle slipped, sprained her ankle currently on crutches, normally in her  four and half inch Jimmy Choo heels, at 7am she decided to wear flip-flops, albeit designer; and finally
  • Friday - Some low down ruffian hoodlum rear ended me at a RED light.  On the pretense of an insurance swap, decided to do a hit and run.  So I have a steering wheel implant on my chest a sprained ankle and a sore rear end!
  • In the circle of life and death this is all just circumstance.
"Dear God please can you make next week peaceful and uneventful?










 

Tuesday, August 26, 2014

Tuesday 26th August

Hello friends,

Johnny, has to take a check list of medications on a daily basis, pink, yellow, blue, white and red, one of them being a prescription of Methadone, for pain.  

Methadone is used to treat severe pain, belonging to a class of drugs known as narcotic (opiate).  It works in the brain to change how your body feels and responds to pain.  Thus it is an incredibly strong pain killer it's also used for heroin users.  For weeks now Johnny lacked, vitality, strength stamina, exuberance.  Well you might say - "but of course Michelle he has Stage IV Pancreatic Cancer".    Being on so many medications his appetite was not as strong,  he had lost so much weight, visibly he looked like he had cancer.  It was actually not a good time for him. 

But, Johnny does not have pain.  What is pain?  What do you yourself call pain? To us, pain is "writhing around on the floor in a foetal position" thus Methadone could be used, but Johnny is not on the floor in pain, he is in mild discomfort.  So last Monday 18th August, after conversations with our oncologist, we decided to cut his daily Methadone intake from 10mg to 5mg.  A remarkably different person, bright as a button a twinkle in his eyes,  a  ferocious appetite.  We were told hit the protein hit the carbs big time.  He would call and say "Feeeed Me, I am starving". We blitzed the protein/carbs  all last week and finally he regained all his weight.  He was animated, addressing his clients and business, might I add, he was known to be clambering over many a carpet roll, for a dear friend.   Heading to the city here in San Fran, for a solitude lunch at Betelnut!   We even had a night out ourselves. Nice.  One thinks of miracles, is the chemo really working can we really shrink this sucker into remission?    

Well, today was another long day,  Chemo Day smacked him hard, back down again, with a mighty large cricket bat.  We have since decided, second day after Chemo Day, Johnny will have Acu-Pressure and rest at home.  Now-a-days, business can be done anywhere, from the beach, airplane and at home maybe Mount Everest?

Our bi-weekly blood work results were all normal,  our counts are good, liver is normal, cancer markers CA19-9 are down more, and his white and red cells are normal, meaning he is good for  Chemo, his body is able to take it.      

Our Dragonfly, Maine Coon cat, who adores Johnny has been poisoned,  between Dragonfly and Johnny they are both on heavy medications, Bubble our Shitzu has an upset tummy. Since Saturday one has been up on the hour every hour for Bubble - taking her outside for pooping, washing her bottom every time, finally after so many bottom washes I decided to shave her bottom, at 3am in the morning - cleaner that way right!    My plate is flowing and I have no need for seconds!



Friday, August 15, 2014

Friday 15th August


Tough week - new chest power port on Monday as the first port was infected, surgery all day for a replacement, followed by  Chemo Day Tuesday.   A brutal end of the day, continued into Wednesday.  It's as though the Chemo is "gurgling-bubbling" running rife through his veins which of course it is but  you can see his added discomfort and displeasure of the situation.  

Last week Johnny was doing great - perkier and more like Johnny but after a Chemo day it knocks him for six.    Days like this it's as though we take two steps forward and ten massive steps back.

But now for some good news.

Our blood work count is UP our Liver count is UP our Blood cells are UP.  It's all good and Normal.  The chemo is doing its job - with a mighty fine grin on her face, our oncologist Bobby Head said "I am tickled pink".  Keep it up kiddo!!






Monday, August 11, 2014

Monday 11th August

Good evening friends and loved ones,

Today was interesting to say the least.  Johnny is at his finest, given in all things considered.  As you know Johnny has a Chest Power Port embedded on this right hand side,  for easy access for the Chemo and other blood work.  Friday, Johnny noticed his Port was become red, over the weekend it become significantly redder and tender, today with a slight infection.  Today he took himself into Marin General Hospital, more surgery required that they remove his old Chest Power Port and give him a newer Port now to his left side.

For those of us that are "huggers" when greeting please try not to give him that great "bear hug", for obvious reasons.

Chemo day tomorrow - five hours and more.


Friday, August 8, 2014

Friday 8th August


This evening, the house is quiet, still, motionless.  A complete stillness - like water standing. Awaiting.  A moment. A ripple.   For us here on the lagoon - one awaits a skier to disturb the waters.  It does not happen.  Let it be quiet. 

Puppies are worn out resting at  Johnny's feet whilst he rests.   Dragonfly our Main Coon has not left Johnny's side since 3rd July.  He is talkative and head-butts Johnny with the odd gentle love-bite.  Whereas the other cat, Jellyfish, will swipe him any time he can.    It is true, animals sense, feel and smell.  They are insightful.   We, as humans just don't realize or recognize it enough.   The only movement I feel is our American Flag fluttering in this evening sunset's breeze.

All this week Johnny has looked great and energized.  But, a long day today - end of the week, he looks exhausted.   I panic when I see him, white as a ghost, thinking "god I hope the sun is out tomorrow, I need to get him a little glow-tan".   

Next Tuesday is our long day of chemo, hah, reminds me I must ask that nurse for a more suitable designer portable chemo take-away bag - this blue thing is beginning to bug  me - it needs a logo of some kind or stripes of kind.

This evening, my heart is in pain, my eyes are full with endless tears.  Everyday, one awakens to a new dawn and hopes the chemo has shrunk his tumor, those cancer cells just that little bit more, and are disintegrating into dust, whilst his body is being fueled with good food and he has the strength to  fight emotionally and mentally to challenge this horrible sickness.


Below is Johnny at his finest  - smiles and laughter all round.
I love you dearly, darling Mr BooBoo!!

Johnny @ Sams Cafe - Tiburon - Happy Happy Days 





Monday, August 4, 2014

Monday 4th August

Good evening,  friends and family,

It is a month today,  Dr. Bettinger confirmed to us of Johnny's illness.   Time has flown, a whirlwind of events, unfortunately, nothing as exciting as a Gala Opening Event or a 49'ers game at the Levi Stadium! but a ceaseless bowl of colorful pills to be consumed, along with hours upon hours  hooked up to a chemo drip in our newly found hospital digs!

Johnny looks great, "how is that possible?" might one ask, "he has cancer?"   With all the medication he is taking, the odd boat trip on the lagoon or snoozing under the canopy in the Bubble Lounge, the sun will surely follow him.   So our tanned Liverpool Johnny looks great, but feels like utter crap.    He is weak and does not have the strength he used to.

He spends the odd hours at Bentleys Home Design finishing up paperwork and supporting his clients as much as he can with their designs.  Should you be in the vicinity of Bentleys, do not hesitate to stop by or even call him on his mobile to say hello.








Tuesday, July 29, 2014

Tuesday 29th July

Johnny had a great weekend, all things considered.  With a mighty fine appetite, thanks to our village of friends.  He is constantly saying I am hungry, I jump from my seat when I hear this "Darling what would you like me to get you?"

Today, we had our second round of five hours of Chemo,  this time it has knocked him sideways.  We were told this round  of Chemo is when we start to notice side affects.  We left the hospital, late this afternoon, again, with a leaving gift from our nurse, our portable Chemo pump bag for another 46 hours. 

This evening he is resting - but feeling more nauseated than normal, along with difficulty in swallowing, chewing and cannot eat anything too hot or too cold.  

We await a better dawn of feeling with clearer waters tomorrow.

Thursday, July 24, 2014

It's so Unjust . . . . .

I share with you my inner personal turmoil of thoughts and emotions.

On the 3rd July, 2014, my Johnny, had been diagnosed with Stage 4 Pancreatic Cancer.  It’s been such a struggle, a slap in the face.  My best friend, my husband of five years, my mate, my everything since I was eighteen years of age.   An emotional, heartbreaking rollercoaster, a trilogy of exhaustive questions, too much google, giving one hope and dreams, only to be shattered in a nano of second, in that search to find an answer to Pancreatic Cancer.  There is no answer, there is no cure.   A barrage of questions to  doctors, nurses, and friends, questions  answers to answers and if we don’t hear the right answer one goes to another doctor to get another answer.  Searching, questioning, you have to be your own advocate, there is no one out there to do it for you.  You are out there to search yourself.  How is this possible? You are a doctor tell me what do to – where do I go to who should I speak to please  help me? I am at your mercy.

Medication, should one stick with  Western Medicine or  Eastern Medicine, should we see Tibetan doctors should we meet this physic.  Whom can help us rid us of this toxin in his body?    One will try the world for Johnny Pye at the young age of 57 it’s unjust.  Is this a trick pinch me and I will  be good I promise.

 To watch an alert spirit as Johnny’s slowly become less energetic less interested in life and such.  His brain is alert, but watching him you can see he is trying to figure should a round head go in square head?  How should I design this bathroom, where should the lights go on this wall or that wall? He ponders so much more than usual.

As he stares into space,  one watches him quietly - silently, from a far, trying not to be seen by him but wondering where he is – what is he thinking what land is he in, is he Ok?  I dare to ask “Darling are you OK, for fear of being left out of his thinking world.  I so want to be part of his thinking if only to help him,  appease him of the questions and fear he is going through.   As surely he is scared, but I have to be strong for him. I am his guardian his gatekeeper.  His little one.

Friends come and go whilst visiting him – he sits, listens and digests their comments – we await to hear what he will say in return, those silent unspoken words and empty spaces are there, unspeakable,  I interject with a laughable comment to help break the silence, the moment.  Try to help our friends – “it’s not you” – "but our Johnny is thinking deep inside within his soul".  He is tired of talking, tired of thinking.  He wants and needs silence.  My darling I promise I shall give you that peace you so desire.

He works religiously only to clean up those loose ends.  Ensuring he has time to leave a tidy book.  He loves his showroom Bentleys Home Design, the clients the creativeness the energy and design.  Helping his clients create their dream home.  And now he has to leave behind.  Close it down leave it be.  To now focus on his wife, me, Michelle, home and animals.  That is his ultimate end. 

Johnny’s life has been one long chapter of events.  He travelled fruitlessly throughout the world, looking for that final piece for his chapter of life.  I feel, I gave it to him.  The joy, the harmony the love and contentment, fulfillment and most of all happiness.  Johnny lived life on the edge; he practically tippled on the edge of life with a happy laughter and twinkle of a smile.  He did life, he embraced life, he lived life and whomever came  across in this path of travel, Johnny was kind opinionated, but passionate to them, he had a big heart and cared for people.  A thought comes to mind.

We were in the city parked our car and had lunch.  As we left the restaurant, we were nearly given a ticket, thankfully this did not happen, but what did Johnny do, he proceeded to check all meters and cars and topped them up in order that the cars did not expire and get ticketed!  A true heart a gentle heart.

This evening, we sit outside in our garden – in our white Bubble Lounge watching the water, the skiers and boaters,   seated, cuddled together but it feels as though we are a million miles apart – both preoccupied with our own thoughts from today’s doctors appointment.  I long to cling to him, I yearn to hold him but he sits alienated in the corner, in the cushioned Bubble Lounge, sits and thinks, I watch him – he is a zillion miles away from me – where is he? I wonder how can I get there to be with him in his mind and soul.    He holds me, he holds me close but I need to feel him so much closer we have the barrier a wall it’s the cancer the tumor how does one get to be “closer than close” when a tumor is in the way?

Thursday 24th July, 2014



Sunday, July 20, 2014

Sunday 20th July

Greetings to you on this Sunday morning. 

After Johnny's screaming "Chemo Day" on Wednesday and many a conversation with doctors, nurses and friends, we were told to expect the worse on Days 2-3-4.  Why we asked?  "Oh the pain, the pain is incredible it will be excruciating and he will not be able to do anything".  

Well our Johnny has done the exact opposite - Days 2-3-4 he has been up and about, working at Bentleys Home Design, working on completing our home, tying up paper work, making appointments with clients.  Albeit, in short stints but he is up and about.  Taking naps when he needs to, but most importantly Johnny is eating and taking his medication from Nurse Michelle.   

Catching up with friends has been hard, mentally and emotionally,  he does become exhausted.  Right now Johnny is very quiet on the inside, deep within his soul, one can see it and feel it, so to you he might seem "fine visually, and look OK", but deep inside he is aware of the turmoil that has hit his body.

Again, we thank you for your well wishes, text messages and phone calls.


Thursday, July 17, 2014

Thursday 17th July

Johnny had his first grueling day of Chemo Wednesday 16th July.

An exhaustive day.  The nurses were hugely supportive, nipping in and out of our room to change the numerous bags of chemo which dripped into his Chest Power Port.

He slept through most of it, with a happy smile on his face after speaking to his son, Lee Carter, in Liverpool via Skype.    We left at 3pm, could not wait to get out.  Home bound, but not without a another gift from the nurses,  a portable chemo bag for another 46 hours attached to his Chest Power Port.  Can't take off at all, conveniently tucked under his shirt, although for some reason, they don't seem to come in a designer label such as Prada, Louis V or even a Jimmy Choo for that matter.

Thursday 17th July - Johnny awoke after a deep sleep - completely rested and raring to go.  "Let's go" he says - astonished I asked "where to",  Bentleys Home Design, of course I have paperwork to do and clients to see.  Yup our Johnny spent most of the day at the showroom catching up on paperwork.

Johnny is eating well and keeping up a healthy appetite.  We thank our village of wonderful loving friends for keeping him fully nourished and healthy.




Wednesday, July 16, 2014

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Friday 11th July


Friends and Family
We are truly  overwhelmed by the support and good wishes.

Johnny starts an aggressive series of Chemo next Wednesday 16th July - five hours. 

A Food Train has been set up should you wish to participate: see below link.

https://www.foodtidings.com/Schedule/View/224999e3-152e-4292-a476-80f2afcb4ae8


Tuesday, July 15, 2014

Tuesday 14th July

A message from our Johnny Pye.

"Thank you everybody for the overwhelming, response and concern for me.  For your wishes thoughts, prayers and especially for the yummy food.  Thank you.

Today, was an excruciating long day of final doctors, visits and decisions.
The cancer is in my Pancreas, Lungs, Liver and Glands.  Thousands of nodules.  Without Chemo, they give me three months.  As of tomorrow I start chemo therapy.  I am well aware this is going to be pure hell.  But hopefully it will keep me here for a year and who knows maybe longer.

So thank you for everything and to my "Rock" Michelle, who makes everyday worth fighting for".

Kindest regards,
Johnny

Friday, July 11, 2014

Friday 11th July

Dear Friends and Family,

Whilst we are more than happy to accept your love and good wishes when sending Johnny  text messages, but may we please ask you to refrain from sending him "advice websites / web links / here is what you should do". 
 
It is so incredibly overwhelming for him to view read understand.  We have a strong preference if you send to my email mseeram_pye@yahoo.com as I am his "Gatekeeper".
 
I will duly forward onto the appropriate medical person that we have.
 
We thank you kindly.
 
 

Wednesday, July 9, 2014

Wednesday 9th July, 2014

Today we visited an Oncologist.

He confirmed that our Johnny Pye has Pancreatic cancer, an aggressive form of cancer,  unfortunately no surgery can help due to the tumor wrapping itself around his blood vessels.  The tumor is quite large.  The Cancer has spread to his liver and lungs therefore radiology is not an option. Chemo may-be our only option.

The Whipple Procedure is not possible, as the liver is affected and again the tumor is too near his blood vessels.

We may start Chemo next Wednesday - a five hour stint every two weeks.  Please let me know if you would like to keep him company, obviously two at a time as to not to overwhelm him.

Thank you for all your calls and text messages today sending our Johnny Pye your warmth and love.






Tuesday, July 8, 2014

Tuesday 8th July, 2014

Loved ones,

Our dearest Johnny Pye has been diagnosed with "Pancreatic cancer".

There were no early indications of an illness other than a tight pain in his chest, and for him to have a lack of appetite and start to have a rather  unhealthy yellow glow in his eyes and skin.

Diagnosis, initially was gallbladder issues,  surgery was suggested.  Johnny was very close to having the operation but went for a second opinion.  Blood tests were taken, it was noted his liver had  "spiked" severely hence the yellowing.  An ultrasonic camera was inserted through his mouth, one to see what was going on and two to flush out his bile duct.   A metal  "stent" was inserted to open up his bile duct.  The camera then came across an obstruction the "tumor".

Sadly, and unfortunately,  the illness has spread to his lungs and liver.  We received full confirmation Thursday 3rd July at 3.00pm.  Certainly no wild fun 4th July celebrations were to  be had that day.  Full blown shock.

We shall, endeavor to keep you in the loop.  Currently, he is extremely tired and resting more than usual.   As we all know Johnny is out on the town partying up a storm!  Our Johnny Pye way.

Kavie and I will let you know when he is able to take visitors.
Thank you for your love and support.

I can be contacted via mobile or email:
Tel: 415 209 3283
Email: mseeram_pye@yahoo.com

OR via
Kavie von Husen please call or text message
Tel: 415 328 4787