First Christmas without Shane. It sucks. *Don't read if you want to stay in holiday cheer*

It's been a long while since I've been to this blog.  My memories of Shane doing this blog himself are slowly fading away.  It's hard to believe that this is almost the end of our first year without Shane.  Our last Christmas was bittersweet, because Shane's health was starting to fail & we were just waiting for that one thing that would tip him over to the slippery slope of impending doom.   Once that happened,  we knew that the decline would be inevitable.  There would be no time for him to regain some equilibrium.   It would be this inexorable decent into death.  Shane had hoped to stay as long as possible.  I had hoped, too.  He had a wonderful, loving Christmas, but I guess the stress of celebrating was too much and it konked out his equilibrium.

Sometimes, the pain of grief isn't about losing the one you love.  For me, it is the memories of Shane being in pain, or suffering from his cancer that makes me cry.  Shane didn't look well, after his last Christmas...  He started his unending suffering on December 27, 2011.  His pain never dissipated until his death on January 19, 2012.  Twenty-four days.  They weren't all bad.  And Shane & I had kept on hoping.

Throughout this particular Christmas season, I was trying to figure out why I wasn't overly enthusiastic about celebrating or anticipating happy, joyous cheer.   The first year after the loss of a loved one is always hard.  You mark the year with holidays and significant events that is supposed to be shared with the one  who no longer with you.  For me, Christmas will always be the beginning of the end.  The end of a shared life with Shane.  Gah, depressing.

I was hoping to be with my folks this Christmas.  Unfortunately, one by one, the kids & I fell prey to a nasty virus that requires about a week to recover.  So we're spending a quiet Christmas at home, quarantined from everybody.  We decorated our home, & made it warm & lovely.

O Christmas tree...

Our festive fireplace mantle.

But Shane is not here.

I have discovered, during this year, that I did a lot of things, more for Shane's benefit, than for me.  This actually surprised me.  For example, Christmas was a significant holiday for Shane.  He loved it.  The presents with gilded wrapping paper.  The turkey with stuffing.  The cranberry sauce.  The songs on the radio.  The stockings stuffed with toys and candy.  He had to have it.  As a consequence, I decorated the house, baked cookies, and took care of the Christmas shopping, all the while singing carols into the air.  This year, as I started to go through the Christmas rituals, I felt so empty.  I couldn't understand, because, heck, my kids are still here & they love Christmas. Then, I realized how many things of "Christmas"that I did to please Shane and to make him happy.  And I loved making him feel loved and happy.  Because he loved me and made me happy.  It's like breathing and not being conscious of your chest rising and falling with each breath.   You adopt routines and traditions for the sake of your partner.  You do things for each other, because you know they like it and you love them.  You don't even consciously think about it, like pouring an extra cup of tea for them or stroking their hair when you pass by them.  It's automatic and you start taking it for granted.  And, then, he's gone, and you slowly wake up to all of these obsolete routines that you've established together.  Throughout the whole year.

It is sad, but it is not overwhelming the simple joys of life.  Sometimes, I can imagine Shane stroking my hair and saying "It's going to be okay.  Now, stop crying and blow your nose, because you're starting to look gross."  In a way, I'm glad that the kids & I had to stay home for Christmas, because my memories of Shane & our life together are close and warm.  Merry Christmas, sweetheart, and God bless us all.

Springtime and my brother's speech at Shane's funeral

Hi, everybody!  Just an update about how the kids and I are doing.  We are doing well.  We really miss Shane, but life goes on.  Life is good.  It's still painful to think about the life we had with Shane and the loss of all the future expectations we had hoped to fulfil in our life together.  But, life is still sweet and the kids and I can still laugh and smile together.  We went to High Park yesterday to view the cherry blossoms.  It was such a beautiful spring day! The sakura trees were in full bloom and there were so many people!  If you want to go this weekend, good luck.  You're going to need it, in order to find a parking space.

So many people enjoying the view!

Cherry trees in bloom at High Park, Toronto

The kids enjoying a cold treat under the blooming sakura trees

I'll be returning back to the practical nursing program in Mohawk College on May 8.  I'm looking forward to attending classes, because I'm starting to get bored with staying at home.  I'm thankful that I had this time off from school to spend time with Shane, before he died, and to pick up the pieces to start a new chapter in our lives, without Shane.  In January and February, all I could feel was a sense of relief that Shane wasn't suffering anymore and it was a time to decompress from the past 2 years of Shane's cancer journey.  It was sad that Shane's cancer experience had to culminate to his death, but he bore it with such dignity, patience and compassion.  If you saw Shane in his last month of life, it was hard to see such a gentle person be slowly withered and ravaged away by the effects of cancer.  So I was sad to see Shane die, but I was glad to see the end of his pain and his anxiety of having to bear more agonizing trauma.

Shane's last picture with Tao - Father and son brushing their teeth together
January 8, 2012

But the month of March was the hardest month to bear, because the kids and I started to remember Shane, before the cancer diagnosis; when he was young, strong and healthy, with his whole life ahead of him.

Shane, during his black belt training days, 2006

That was when our grief became more pronounced and it coloured our daily lives.  It was so unexpected for me, because I thought that I was doing so well, as a new widow.  Duh!  I didn't know that grief can come on suddenly, triggered by innocuous things, such as squeezing out a tube of toothpaste.  Shane was particular about squeezing out the toothpaste from the bottom of the tube.  He hated it when I glomp the middle and leave a distorted tube of toothpaste by the sink, mangled by the remains of my hand grip.  So I would fix it, while rolling my eyes at his particular foible about toothpaste, in order to avoid his admonishment.   So here I was, fixing the stupid tube of toothpaste, thinking about how Shane would remind me, then realizing that he wasn't around to say anything at all, and then, promptly bursting into tears.  That stuff kind of happened everyday in March.

But, I'm much better now.

I promised to post more of the speeches from various speakers at Shane's funeral.  Here is my brother's speech.  My brother, Dalson Chen, is a respected journalist at the Windsor Star.

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In the staircase that leads to Shane's basement, there's a poster of Bruce Lee.

It's an image from the movie, Enter the Dragon.  It's Bruce Lee, muscles rippling, holding up a pair of nunchaku, with this look on his face that says: "Try me.  Test me.  Fight me, and I'll show you how strong I am."

It's a really cool poster.

But, honestly, that wasn't Shane.  That wasn't the way how Shane lived his life.

He had different ways of showing you how strong he was.

Shane Boyce was among the most soft-spoken, thoughtful, peaceful, patient, reserved, and reasonable persons that my family has ever known.

The Shane that we knew, never sought confrontation.  He abhorred real conflict and violence.  He didn't even like raising his voice in anger.

And even when he was genuinely irritated, or needed to be stern, I never heard any trace of rage or rancour in him.

Being the bigger man, taking the high road, acting honourably -- these things seemed to take very little effort for Shane.  They were just his nature.

The strength to be gentle.  The strength to be considerate.  Shane was hugely strong like that.

It's like he didn't have to try to be a good guy.  He just was.

Which is not to say that he was a pushover.  On the contrary, he could be very, very stubborn.  If he believed something were true, or felt that something was right, there was little point in arguing with him.

He would never force the issue, but when you talked to him, you could sense his decision had been made -- and he was holding fast.

It wasn't until his disease that I really appreciated how strong he was in that respect.

You know, for many people, being diagnosed with a terminal illness would be an occasion for despair.  Existential angst.  Emotional outpouring.

But not Shane.  He decided that cancer was a fact he had to deal with.  There was nothing metaphysical or even philosophical about it.  When he talked about it, when he blogged about it, it was always about the facts.

On one occasion, I asked him on the phone if he wanted to discuss spiritual matters.  He quickly changed the subject.

Because, for Shane, whatever the disease was going to do to him, it was a matter of facts, not feelings.


Zoe, Nia, and Tao -- You need to know that your Dad did that for you.  He loved you more than anything.  He hated the thought of leaving you.  So he clutched every strand of life that he could right until the end.

In his last week, my sister tells me there was a moment when Shane sat up, fully aware, and said:  "This isn't happening.  Nothing changes with this family."

That was the strength in Shane.

The night before he died, he was barely lucid.  In and out of consciousness.  And my sister brought Tao to him.  She said: "Shane, Tao is here."

And I watched Shane grit his teeth, and with supreme effort, he pulled himself out of that semi-comatose state to look at Tao with open eyes, and to purse his lips together to give his son one more kiss.

That was the strength in Shane.  The strength to love like that.

At the time that Shane took his his last breaths, my sister and I were in the kitchen, discussing our past relationships.

And we talked about about what a positive impact Shane had had on Kaye's life.  How good he'd been for her.  Like no other man before.

Knowing and loving Shane has changed Kaye irrevocably.

I can personally attest to how stubborn my sister can be.  I know first-hand how hard it is to argue with her.  So let me tell you, a man who can change my sister forever -- That's a man with vast reserves of strength.

That was Shane.

About 24 hours after he passed, we were sitting in his bedroom, looking at the empty spot where his medical bed had been.  And Kaye said she couldn't believe it.  I don't think a lot of us can.  It's hard to process that he's gone.  I don't really know how to act about it to be honest.

But, I think that if Shane were with us, now, he would ask us to keep calm, carry on, and be strong.

To treat each other with the same respect that he treated us.

And to remember him in his best moments.  Moments when he was strong.

When it comes to Shane, there were plenty of those.

Argh! Shane's sense of organization is not what I'd call organization!!!

It's been 11 days since Shane died.  Unfortunately, I do count back to the days when Shane was alive.  I try to avoid staying up past 01:44 am, because that's when Shane breathed his last couple of breaths.  Right now, I've been trying to reorganize my life.  The amount of stuff to be taken care of is intimidating - running a household on my own as a single parent.  And, of course, I have to take care of Shane's things and all of the documentation that is associated with getting ill, dying and death itself.  That's when I fully discovered Shane's major method of filing:  putting papers into plastic bags and throwing them onto our huge filing cabinet.  On top of it - not inside it.  I guess that I should be thankful that he kept the stuff within the vicinity of the filing cabinet.  Bleh!  Thankfully, my folks are still around in the GTA (Greater Toronto Area), so my mom acts as my "grief sherpa" - providing comfort & support when I need it, casting her beady eyes at each necessary transaction/procedure that all survivors have to go through to "finish up the deceased's life".

The kids returned to school on the following Tuesday after Shane's funeral.  I gave them Monday off, because the weekend of Shane's visitation & funeral and Chinese New Year's Eve left us reeling from fatigue, physically & emotionally.  The girls seems to have adjusted to their regular school routine, with the beneficial support of their teachers and classmates.  But, my son still feels the loss of his Dad quite strongly, especially at night.  He's getting much better as time goes on.  At least, he's started to sleep in his own bed again.  I was getting tired of being kicked at & wrestling with the bedcovers during the night.  I never fought over the bedsheets with Shane.  He was a very easy & predictable sleeper.  I could sometimes tell what time of the night it is, by which side he was lying on - just like a rotisserie chicken, right side, back, left side, stomach, DONE!

Anyway, a shower of thanks to my cousins who helped me purge all of the medical waste and health care equipment, within the 2 days after Shane died.  I really didn't want to have any of it around, because it reminded me too much of Shane's suffering.  As his health declined, the supplies and equipment increased dramatically in number and complexity, inundating us with boxes of health care stuff.  Near the end, I was tossing them everywhere in the master bedroom and bathroom.  I didn't have access to my walk-in closet, because it was filled!  So my cousins swooped in and helped me arrange health care equipment pick-up and boxed all of the unused medical supplies.  Thank goodness, the local pharmacy took all of Shane's medications,  all of them!, for proper disposal.  I was warned to give all of Shane's narcotic analgesic drugs to the pharmacy, because it wasn't safe to flush them down the toilet  - it'll pollute our water - or chuck them into the garbage - drug addicts have been known to scour garbage dumps for drugs that had been improperly disposed of.

It was harder to donate Shane's clothing to Goodwill, but my best friends came on Saturday to help me with that, too.  I'm not getting rid of all of Shane's things, but frayed t-shirts and holey underwear... TOSS!  I still have Shane's karate gi uniform and black belt.  My aunt suggested for me to put his karate stuff in the casket to be burned at the crematorium, but I didn't think that it was necessary to follow that particular Chinese tradition.  It is traditional to burn paper money and paper-mache items to represent material things in order to ensure that the spirit of the deceased has a lot of good things in the afterlife.  My aunt thought that Shane might have wanted his karate uniform, because karate played a huge part in Shane's living life.

Anyway, here is my speech for Shane's funeral:

January 22, 2012
My husband was a quiet, unassuming man.  He never made a humongous fuss over anything.  But, somehow, this beautiful, sweet man managed to touch so many hearts, so many lives in his lifetime.

I only knew Shane in the 14 years that we've been together.  My husband is somewhat of a geek; a nerd.  He really liked playing around with computers.  He enjoyed reading sci-fi and fantasy novels.  He played role playing games with tiny action figures.  He was not socially adept at human interactions (awkward!), but he was generous and kind.  His favourite place in the house was his man cave in the basement, where he had a massive network of computers linked to his big flat screen TV, Blue Ray player and stereo system.  Each family member has his or her own personal computer.  Shane introduced each of our kids to the joy of computing by the age of 14 months.  It's fortunate that he married a wife of similar interests; a nerd in disguise.  When he talked about our first date to his childhood friend, Richard Pickles, Richard said, "Uh, oh.  I think that I'm hearing about the future Mrs. Boyce."

Shane, prior to any cancer treatment

Shane had three passions in his life: our family, computers, and karate.  I don't think that I have to tell you that Shane was a good father and husband.  You can see that truth in my children and in me.  And Shane had already generated this reputation of being a great computer geek.  But, I can tell you about his karate, a passion that he and I shared.  Shane had been involved in karate even before I met him.  His adept technique and expansive knowledge was well recognized among his peers.  What was it like to have two black belts, husband and wife, in the family?  We quickly learned to argue very carefully.  I wasn't afraid to spar with Shane, but I knew that he would win every fight, because he was quicker, stronger, and more agile than me; a better fighter than I would ever be.  Shane had instructed many of our friends at the Academy of Martial Arts.  He led classes and belt gradings with confident competence.  If you had never heard my quiet husband call out in the dojo, I think that you would be surprised by the clarity and intensity of his voice.  Shane practised many of the tenets of the martial arts in his everyday life: especially Honour, Integrity, Loyalty.  Unfortunately, Time was taken away from Shane's life because of his cancer.

I've seen Shane at his worst and I've seen him shine at his best of times.  The time that proved to me that my husband was a cut above the rest was the last two years, during his battle with cancer.  Shane never whined or complained about his suffering.  He bore his physical travails with determined fortitude.  Even during the last days when he was still himself, he thought about how other people were affected; especially his loved ones.  When his friends and family visited, even though their company sapped his energy, he knew that they needed to see him and he waited patiently for them.

Throughout our marriage, Shane & I always have this conversation, almost every week.  I always asked my husband, "Shane, you know I love you, right?"  And he'll say, "I do."  Then, I'll ask, "Shane, you love me, too, right?"  And he'll say, "Yes, I do.  Why do you always ask me that?"  And, usually, I never answer.  I just smile.  I always asked Shane the same questions over and over again, because I loved hearing him answer in his quiet and serious manner.  Even though Shane is not here, I still ask him those questions.  And in my mind, I can still hear his quiet reply.

I miss my husband.  I miss his quiet strength, his kindness, his presence, but not his love.  Because his love is here.  It is still alive and well.  In our hearts.  In our minds.  In our lives as we continue on without him.

Thank you for being part of Shane's life.  And thank you for coming here to honour and respect him.

Shane, October 2011, on the escarpment.
After visiting Juravinski Cancer Centre.

Life after Shane.

Hi, everybody.  This is Kaye, again.  It was very difficult to go through the first week without Shane.  But we did and whaddya know, life goes on.  Thank you to everybody who contributed to the kids' trust fund.  It will be used towards the kids' post-secondary education, which will be in about 5 years for Zoe, 6 years for Nia, and 10 years for Tao.

Shane's funeral was very lovely.  We had quite a few speakers, and I'm planning to post most of the speeches in the blog.  I plan on keeping them for the kids, especially for Nia & Tao, so they could read them later on in life, because they're too immature to really understand right now.

For starters, I'll post my mother's speech.  She wasn't going to say anything at the funeral, but  my brother, Dalson Chen, convinced her to speak.  So she prepared this after the visitation, on the night before the funeral.  My mom has no problem with public speaking, but she feels self-conscious about speaking in English, because she thinks that her grammar and pronunciation isn't that great.  Everybody thought that she did just fine.

2012 Jan 22:

My name is Ming Chen, Kaye's mother, Shane's mother-in-law.  The first time my husband and I met Shane was also the day he told us he want to marry Kaye.  I looked at this young man - never met before, didn't know anything about him.  Wondering whether they will be good to each other.  But then he obviously was sincere, seemed to have a very calm personality, well educated, had a promising career.  Slowly we gave them our blessing.

After all these years, now we realized that they were meant for each other.  They respected each other and grew in their marriage together.  Shane showed Kaye how a life-long partnership worked.  They were more in love with each other.

With Shane's help, Kaye became a mother, a role she had longed to take.  Because of Shane, Kaye went through the tough training of karate and became a black belt.  Because of Shane, Kaye is more mature, more confident, more focused in life.

We thank you for that, Shane.  Now is the time to say goodbye.  Although you are gone, you are not forgotten.  Everyday I look at my three beautiful grandchildren, Zoe, Nia, Tao.  I know that your life will be carried on by them.

Well done, Shane!

Shane's visitation and funeral services

Shane's funeral will be held at McKersie-Kocher Funeral Home.  Visitation is on Saturday from 6pm-9pm. The service will be on Sunday at 10am. Thank you for all of your support and condolencess,

Book of Memories for Shane Boyce at McKersie - Kocher Funeral Home

kocherfuneralhome.frontrunnerpro.com

Bye, my love.

Shane died at 01:44 am today, Thursday, January 19, 2012 at 38 years, beloved husband and loving father.  He took his last breaths peacefully.  Shane spent his last day surrounded by family.  He spent his last hours with people who loved him.  I listened to his last couple of breaths with my ear against his chest.  It was peaceful.  He left his life with grace and dignity, just as he had lived it.

The end is nigh.

I don't know why I feel this way, but I feel Shane slipping farther away.  Last night, Jeff came over to do the night shift and he was great.  He helped his brother to ambulate to the bathroom to use the toilet and empty his bowl of vomit/sputum.  If Shane needed something, Jeff was there to get it for him.  What a champ!  I was able to get several hours of sleep, so at least I can function.  For a while, I was so tired that I felt that I was barely coherent at times.  But one thing struck me after Jeff left to go home this morning.  In the several hours that I was  away from Shane's side, Shane looked different.  He was same in body, but his presence seemed farther away.  I have to admit that I cried really hard this morning, because, with every breath, I can feel him moving from life quietly.  But Shane can still respond to touch and he doesn't want to leave, even tho' his body's all conked out.  Thanks to all who visited today.  Julie's staying overnight to help out.  I really appreciate all who are supporting our family and Shane, and giving assistance in their own ways - food, sitting with Shane, visiting, calling to check up on us.  Thank you all.

Waiting for...

Dear friends & family,

It's been a hard burden to bear, but Shane's cancer journey is nearing its destination.  Since Shane can't blog, I can only offer my perspective as Shane's wife and caregiver.  Life has been difficult since the beginning of the new year: emotionally draining, physically & mentally exhausting.

Shane's pain management unfortunately has side effects. He's currently using a PCA pump, infusing 1.1 mg of hydromorphone per hour. Hydromorphone is a derivative of morphine.  It is an opioid analgesic, in medical terms; a narcotic, in legal terms. Shane suffers from nausea & vomiting, common side effects from opioids.  Another common complication from pain medications is opioid toxicity.  Shane's liver is supposed to break down the medications and his lungs, bowels and kidneys get rid of the waste.  Unfortunately, the cancer in his liver is probably interfering with that; he hasn't had a bowel movement in days; his fluid intake is dependent mostly on IV hydration, which is limited; he vomits whatever he ingests; he has been on long term opioid pain relief, and may have kidney problems.  Thus, the wastes from the pain medication build up in the body.  This is called opioid toxicity. With opioid toxicity, the person has very marked behaviour changes.  Shane started to display signs of delirium or confusion yesterday, in the form of agitation, bad dreams, nightmares (for the past week), drowsiness, confusion,  hallucinations (he told me that he saw a golden retriever sitting and walking about in the room  a couple of days ago), restlessness, reduced concentration and short term memory loss.  The problem is that these symptoms could be Shane's brain tumours affecting his mental faculties.  But I suspect opioid toxicity, because his coordination & balance are not overly affected. Overall, it's sad and distressing to see Shane not be like Shane.  It's probably more scary if you have never encountered these symptoms before and don't know why they are there.

What we'll probably do about it:  1) Continue IV fluids, to keep Shane hydrated.  I'm hoping that Shane's kidneys are still working and can keep flushing the wastes out of the body, thus eliminating the toxicity; 2) Lower the dose of Shane's pain meds.  If Shane's kidneys are not working properly, the doctor may lower the dose of opioid;  3) Might switch opioids. Different opioids make different wastes.  By switching from one to another the body can continue to get rid of the wastes; 4) 24 hour supervision of Shane.  Shane's so confused that he requires someone sitting with him, in order to keep him safe.  Shane was able to handle his IV infusions by himself in the past (changing the infusion rate on the pump, disconnecting his IV line, etc.), but now he confuses his IV lines with his pain pump and other subcutaneous ports.  He's so smart that he could get himself into a whole whack of trouble, considering how much he learned about his own health care.

And that's just one aspect of Shane's complications.  I'm not going into depth with his other symptoms:  swelling in his legs & feet and abdomen (edema), fluid in his lungs (pleural effusion), accelerated heart rate (probably from fluid surrounding his heart (pericardial effusion) - Shane's heart rate is known to get as high as 143 beats/min.  (normal heart rate = 60 - 80 beats/min at rest).

Yeah, the situation is sucky and unfair.  But, we do the best that we can out of life, right?  Our main focus is to keep Shane comfortable at home, surrounded by love and warmth from his family and friends.  Rest assured, Shane is loved and will be loved to the end.

It's been horrible lately...but we're home now.

Hi, everybody.  This is Kaye.  Shane's not up for blogging right now.  And I might have to take over the blog from now on.  Last Friday (Dec.30), Shane started vomiting everything that he was taking in orally.  Unfortunately, that included his pain medications.  No pain meds means no pain control.  And Shane was in a lot of pain.  Because of the holiday weekend (New Year's), we couldn't reach our family doctor to change all of Shane's meds to intravenous or injection.  Shane lasted through 3 days and nights of intense pain, hoping that something would stay down and be absorbed in his system.  But alas, nothing did.  By Monday, the nurse & I decided that Shane needed to be admitted to the emergency department at the Milton District Hospital.  We waited almost 4 hours in the waiting room, before Shane finally could lie down on a stretcher in an examination room.  Shane was hooked up to an IV and was dosed with a total of 7 mg of morphine within a period of 1 1/2 hours.  It was a relief to see the pain go away from Shane. 

Shane was finally discharged from the Milton District Hospital on Thursday with a CAD pump, which is a battery powered portable pump that continuously infuses pain medication through subcutaneous injection (a needle under the skin); it also permits Shane to dose himself with more pain medication for breakthrough pain.  He hasn't eaten/drank anything for the past 8 days without vomiting.  But this afternoon, Shane has been to take a bit of broth and ice chips without vomiting them up, so his digestive system might be able to tolerate something now.  Who knows if he'll get better?  Nobody knows.

Shane is very weak and "not all there".  I can't really say that he's disoriented because he know who he is, and where he is, and what time it is, but I can't ask him questions that require complicated answers.  Life at home has changed dramatically, because of Shane's declining condition.  We had to get him a hospital bed, and we have oxygen if he needs it.  He fades in and out of consciousness, so sometimes it's very difficult to talk to him.  He sometimes perks up and he can walk to the bathroom, but overall, he's been staying in bed.  

Please excuse me for speaking plainly.  Shane's time is limited.  Nobody knows how long he will stay like this, but his condition could deteriorate rapidly.  Especially, since he can't eat or drink much.  If you want to visit Shane at home, now is the time to do it.  He shouldn't be inundated with visitors, but he can tolerate 2-3 people at a time for short visits.

Anyhow, I'll write more later.  Signing off, Kaye.

2011-12-27: Tue CyberKnife treatment 3 of 3 (fail)

This day didn't start well, end well, or get prolonged into the next day well. Though I suppose it finished overall well. 

Note: Thanks very much to all friends, parents and relatives that helped out during these troubled 3 days.

Tuesday, canceled CyberKnife because of two reasons:

• (1) Swelling feet from last Thursday's hydration treatment, this indicated that my liver or kidney was not working or something else bad happened. 
• (2) I was spitting up something dark that could have been bile or blood as of 2 AM that morning. The CyberKnife people convinced to come in to the hospital to be checked out.

What they found out was that I had a heart rate of 143 about 25 to 40 beats higher then they thought was safe.  

I also think that it was during the course of Tues's investigation that it was discovered that I was spitting up blood, but that it was from cutting what may have been a stomach ulcer around 2 am with a sharp rice cracker. The spit up sample had a sample of blood mixed with stomach acid (partially digested).

Wednesday, I received a phone call early in the morning from one of the J.H. doctors. They had booked me for:

• an ultrasound of my legs and 
• a CT scan of my chest. 
• Both were to look for blood clots that may have caused the foot bloating.

Results:

• No clots anywhere to be found. 
• + again, a high heart rate (134 this time)
• + the CT scan showed fluid building up around my heart and around my right lung.

 These results were enough to convince Kaye and I to commit me to the hospital for the night.

Wednesday night - Thursday morning:
Slept and ate at the hospital.

• "Slept" in a quad room with a bunch of very acute care patients requiring help to almost everything including bathing and peeing. So "Sleep" was a relative term.
• Once again (last time my July2010 surgery), since hospital beds are plastic, their pillows are plastic I had a tendency to sweat in them, then have the sweat pool against the plastic resulting in awesome air-conditioning. Which sucks when you're cold. So had to my change clothing a lot.
• Had my 3rd seizure ever while there. Same symptoms as before, right hand starts shaking a little then coming up without control (missing the nurse's button which I was aiming for!) until I electrocute (seize) and black out. Then I wake up and notice an IV injection sight (rip it out bloodily) see a nurse with a flash light whom I recognized doing his nightly hourly rounds and asked him "why am I in the hospital?". I then slowly started to recall everything that lead up to that point and have to explain my seizures to the nurse.
• Received a few blood tests during the day
• Also did a angio cardio gram of my heart. My heart looks normal (Yay!)

Most importantly, the last thing we did at the hospital was to "tap" my back and drain the fluid from beside my lung and heart.

I had Kaye take a photo of it: We withdrew almost a whole litter (think bag of milk!) (actually 750ml) out of my chest. This makes a huge difference in my ability to breath, cough, speak, etc. I went from collapsed lung to expanded lung fast enough that it was more difficult to do all of the above at first before they started to repair themselves.

So that's about it. I'll let Kaye expand on anything I may have missed. I have to admit that "sleeping" was not a highlight of my stay, so I'm quite tired as I write this to answer everyone's questions.

-- Shane

2011-12-23: CyberKnife 2.5 of 3 done.

They've been having problems aligning the tracers to track my breathing.

So, they're going to track one liver tumor at a time and zap them individually in two sessions.

• So Wed was a waste, nothing they did allowed for whole liver tracking. 
• Then, Thu was ok, they did one tumor (that was the 1st half session of what would have been session. So I'm at session 2.5)
• Next Tue will be the 2nd half session of session 3 making a full session 3 completed.

Problem / Side-Effects:

• Definitely extra swelling with the radiation treatment. This means that I'm in a lot more pain due to swelling. So more pain meds and even sometimes that isn't enough as the cause, swelling, still isn't settled. Swelling could take weeks to months to go down (I'm hoping days...) as the tumor has to die and then dead tissue be reclaimed by the body.

I'm looking forwards to the  holidays!

Shane

2011-12-21:

Pain's a bit more after the CyberKnife. Hopefully that means the right target is being hit. Swelling before shrinking as they say. However, the increased pain is more likely due to the next paragraph's topic... coughing...

I figured out the problem with my coughing at night to get stuff out of my lungs; stuff that doesn't exist there during the day. It's called pulmonary aspiration. I'm basically letting stomach contents into my lungs then coughing it back up again (at the expense of liver pain due to coughing pressure/irritation). Aspiration is similar to "it going down the wrong tube". Not a problem for a conscious healthy person. Something that I'm not when I'm asleep.

So I figure I need to eat not so late. Maybe this started happening around the time of my increased drug regime and therefore is "eating" away at my stomach, or something. At least we have a term to look into now and aren't hunting, as it is definitely stomach contents I'm coughing up and not mucus production like I first thought.

Regards,
Shane

2011-12-13: CyberKnife surgery BOOKED (yay)

Ok, they finally booked some time on the CyberKnife machines

CyberKnife:

• No special drugs required to prepare for these procedures. So, unlike the brain CyberKnife, no longer require large dosages of dexamethasone.
• CyberKnife dates booked: Fri, Mon and tentatively Wed or Thu next week.

 Pain, Constipation, Comfort management:

•  Ever since I've been on regular pain drugs since this whole liver expansion problem started, I've had juggling problems between pain, constipation. Inability to eat properly because of the migraine surgical trigger point combined with constipation preventing digestion. etc.
• So, at first I was on individual pain meds...
• Then I was on 3 mg Hydromorph Contin, 2x / day (12 hr duration each)
• Then I was recently moved to 6 mg Contin, 2x / day...
• Well, they decided that I was having to take too much "breakthrough pain" because of my digestive problems preventing my being able to process my pills in a reasonable time period.
• So now I've been moved to the Patch for pain.Something called "Fentanyl 2.5 mcg that lasts for 72 hrs". Breakthrough pain meds continue to be Hydromorphone 2-3 mg as required, or Motrin (Imodium 300 mg) or Tylenol 500 mg.

Other:

• I wasn't going to mention this, but it was mentioned how tired I appeared lately. Part of that is a fear of going to sleep. Sleeping on one side, I get heartburn, the other side, I get heartburn. So that leaves my back. However, sleeping on my back to deep REM sleep causes mucus production, coughing and therefore lots of internal organ pain. No idea why.
• Fear is its related to my 12 lung tumors.
• I've started taking a sleeping pill "clonazepam (0.5mg)". In order to try to sleep through any problems Results are inconclusive at this time.

Regards,
Shane

2011-12-07: CyberKnife surgery TBD, pain management

Status as of Dec 07,2011:

• Now: Still waiting for CyberKnife planning to complete. No date set yet for the surgery, but should be in next 7-14 days based on machine availability.
• Dec 05: Met with palliative care doctor in Hamilton. Increased pain dosage, but not used to it yet. Still feel pain, near liver, but having strong drowsiness and a little dizziness as side effects. 
• Local GP doctor has agreed to become long term palliative care doctor to provide local visits instead of the long Hamliton trips.
• Jan 03: MRI of brain
• Jan 09: Doctor follow-up of brain MRI

-- Shane

2011-12-01: CyberKnife planning started

I did the CT scans to initiate planning for CyberKnife today.

My poor dad. He had to wait through 1.5 hrs of them trying to get me hooked up to an IV through my port. They apparently needed a high pressure port connector and the planning dept. wasn't prepared for a port. They usually use I.V. through veins.

Then there was another 1.5 hrs of scans. They scanned me with and without contrast dye. With and without me breathing. The CT scans with me breathing were "slow motion" meaning they wanted many pictures of how I breathed and I moved through the scanner at a very slow table speed (table moves me through the scanner, scanner itself is very heavy and doesn't move).

So, now they have images and a profile of how I breath. So the next step is to set up the planning for (a) what tissue in the CT images to target and (b) when to have the radiation beams "on" and when to have them "off" based on my breathing position and the tracked x-ray position of the gold trackers in my liver.

Once they are nearing completion of the planning then I will receive notification of a date / time for the CyberKnife treatment to finally relieve me of this liver pain and pressure. I hope anyway... there is a good chance the pressure/pain will get worse before it gets better. There is often swelling from radiation before shrinkage of the tumor tissue. Sigh...

On a lighter note, I may have a cancer friend over for a social meet tomorrow. Should be fun. Otherwise I'd be stuck in a hydration chair for 3-4 hours with little to do.

Regards,
Shane

2011-11-29: CyberKnife planning scheduled.

FYI: Official planning date set. CyberKnife planning (CT + mask fitting) scheduled for Thu Dec 1st. CyberKnife treatment to occur 1-2 wks after planning (planning takes at least a week due to determining in 3D what tissue to zap and what to preserve).

-- Shane

2011-11-24: Official word on brain MRI from Nov 17th

Ok, saw the brain oncologist today and got the official word (instead of 2nd hand from a phone call).

Good News:
The old April tumor isn't "reactivated". There is some brain tissue swelling around the tumor, but apparently that is expected for as long as a year after CyberKnife treatment.

Bad News:
6 new tumors in the brain. That brings the total to 8 now. These 6 new tumors are all less than 5mm (0.5cm) in diameter with many only 2mm (0.2cm).

Doctor recommended (as expected) whole brain radiation. However, once we explained the situation with my liver and lungs we agreed to postpone any treatment for now in favour of treating the more pressing liver pain.

We've rescheduled an MRI in Jan to see if any are growing aggressively. He's willing to consider CyberKnife on quick growing tumors as an option to preserve quality of life in the short term, vs. long term "cure" of killing all tumors with full brain radiation.

I haven't given up the option of full brain radiation. If the liver pain is resolved in Dec and the Jan MRI shows even more tumors, then I may consider full brain radiation instead of the threat of my brain being over-run by cancer tissue. Apparently full brain radiation has a good success rate vs. small tumors, but not large ones. Also, if I do get full brain radiation, there will be no escaping the extreme fatigue side-effect. However, the other side-effects are "rare"; though I don't consider 1 in 10 rare... lol

Regards,
Shane

2011-11-24: Kidney and CyberKnife Update, correction about liver rupture timeline

Talked to my radiation oncologist today. Here's some updates:

Kidney Update

• Apparently the ultrasound didn't see anything in either kidney or my bladder, or in the surrounding plumbing that may indicate the left side pain I've felt for the past few weeks. I may be feeling "referent" pain from another source; possibly the liver or the lymph node near the kidney.
• This unfortunately (or fortunately because no new problems?) means that there isn't any steps they can taken to solve that left side pain using the equivalent of a pipe-cleaner solution that they had suggested. (If vein was clogged and causing pain, pipe-cleaner (catheter) to unclog it might have relieved pain.)

Cyber Knife Update

• They like to wait 10 days after tracer/marker insertion (to ensure tracer movement due to swelling stops) before doing the CT scans and mask creation that begins the "planning" stage. So 10 days equals mid-week next week. I'm expecting a call of a date from the scheduling person soon to say exact day / time.
• The actual Cyber Knife operation usually takes at least 1 week after the planning scans are done to give time for the actual mathematical 3D planning required to target the right tissue (tumors) inside the target (liver) to a millimeter (mm) accuracy. So the week after next would be the soonest I can expect a date/time for the actual radiation to be applied.

Correction regarding my liver

• I may have made the following statement, either in person (definitely) or in my blog (not sure) but it is wrong. The statement I was making was, "If my liver capsule (lining) ruptures then I will only have at most 2 weeks left to live."
• I apparently picked up this time schedule from an isolated case where the person whose liver did rupture hadn't yet been diagnosed with cancer, and when the rupture occurred was not treated in a timely fashion allowing many days of internal bleeding before being treated.
• In my recent research, I could not find another case that had as short a time-line as that 2 week case. In all other cases I've found, the individuals lasted many months (or in some cases years) after surgery was able to repair the rupture/tear and suction out any leaked fluid.

So in summary, if I've hinted that I may be lucky to reach Christmas 2011 due to the threat of my liver rupturing, then I appologize. I was working with invalid assumptions and Christmas definitely looks doable, though lasting until the end of the kids' school year may be more of a challenge.

My goal is still to last until Kaye finishes her schooling in Dec of 2012 (at least). Though that is likely a very optimistic goal at this point.

Regards,
Shane

2011-11-22: Recovering from tracers. More bad news.

Recovering from Tracer insertion surgery:
» I'm recovering well from the tracer insertion. It doesn't hurt as much today as yesterday. I didn't require any breakthrough pain meds today (not like the tonnes of it yesterday). I'm not doing any lifting today, just taking it easy. Kaye took the day off school yesterday and today to watch me and make sure she does my lifting for me, not me. (Example: laundry needed to be done today, kids have karate tomorrow and their gi's weren't washed.)
» Thanks to mom and dad Boyce for bringing stew last night. The family enjoyed it.

More bad news (new brain tumor activity):
» The brain doctor's nurse called about my MRI last week Thursday. It unfortunately shows more tumor growth (additional tumor(s)) and that there is activity in an old tumor in my left lobe (so the first 2cm tumor's looking alive again, probably the cause of the seizure).

» I was talking to the doctor's nurse over the phone, so she could only give me general info, no specifics. I'll find out on my doctor's appointment on Monday. I think they wanted to see me earlier this week and to possibly start immediate full brain radiation, but since I'm on paliative care, and my liver is a potential immediate life threat, I will concern myself with that first.

» To go on full brain radiation would fatigue me greatly and possibly turn me into a useless vegetable until it's over. If I am on my last legs due to my liver, I don't want to go out as a vegetable. So I will pass on the full brain radiation until something is done about my liver. If I'm given a number of months extra life from relief of liver pressure, then I'll consider worrying about my brain. As I'll have time to work on it.

» When asked if I was having any head-aches or anything, I said no. So the nurse says that after talking to me and hearing that I have no present symptoms, she understands my decision and we'll talk more (with the doctor) on Monday's 9am appointment at JCC.

Regards,
Shane

2011-11-21: CyberKnife tracer insertion done.

Two needles inserting two tracers / markers per needle is done. Two tracers per largest two tumors in the liver. Surgery was performed without any problems.

Neat factoid: The tracers are gold cylinders. The gold doesn't corrode, interact with radiation or drugs (is inert) and shows up in x-rays. My liver tumors are now expensive. lol

No follow-up appointments yet. I expect to be called soon once they have arranged them.

FYI:

• R.F.A. (radio frequency ablation) has been ruled out. Tumors are too large, as expected. 
• Also, the discussion I had with the radiologist gave me the impression that while embolisation may be a possible short term palliative care measure, it would be extremely painful for a few days after the procedure, and the tumors (being so large) would relatively quickly find another source of blood and would continue growing after that. So long term (longer than I have? or shorter? not sure) it is not a viable solution. Especially with all the smaller tumor lesions spread through the rest of my liver. 
• The radiologists believe that CyberKnife radiation is my best bet at this time.

Regards,
-- Shane