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.