the phone call and aftermath

On the evening of August 9, 2013 I didn’t sleep at all. Sunny had completely collapsed onto the bed, exhausted and Chloe fussed about between him and I, not knowing who needed more comfort.

I lay awake in bed and read until 11:30 pm. Then I lay awake in the dark.

At 12:09 am, the radio on Larry’s side of the bed came on, loudly.

At 12:14 am, the phone on my side of the bed rang. I answered the phone call that permanently changed my life forever.

“Hi, it’s the nurse. I just checked on Larry and he is gone. I’ve called the doctor and figured you want to spend time with him.”

I hung up the phone and got out of bed, called the taxi company and got dressed. I let the dogs out for a bio break and grabbed a duffel bag. From my cell phone I called Larry’s ex wife and my parents.

I sat in the cab, numb, and wept quietly, wondering about my future. Thankfully the driver seemed to understand why I was in a rush to get to the hospital at that time of night and kept the chatter to a minimum. I suppose my eyes were red and puffy by that time and it was obvious that I was upset and not willing to speak.

Larry’s room was empty, the light over his bed was on. I went in and his body looked so peaceful and quiet. Not in any pain.

Sadly my pain was continuing.

I sat quietly for a while until the nurse came in to check on me and confirm that the doctor was coming to pronounce him dead. I began to gather his personal effects:
– slippers
– glasses
– pentacle
– the final Sookie Stackhouse book, which I read to him while he convalesced so he knew how the saga ended (because of this, I can’t watch True Blood any more – the ending was a disappointment and I have too many unhappy memories now)
– the flowers that Bekah and her boys gave Larry
– the gift that Larry gave his daughter on his deathbed, but she left (still super pissed about this – I finally gave up on trying to give it to her in April and donated it to someone who would use it)

As I finished up, I took the final picture of our hands together one last time. And then the doctor came, I introduced myself, thanked the doctor for doing this task and called Leslie and Jeff to pick me up. I needed folks who could help my spirit and they have and remain there as I work things out.

I came home to an empty house with an empty heart and sat on the couch with Sunny and Chloe for a few hours, finally posting the announcement. I went to bed out of exhaustion, unable to cry any more.

That morning, I got up at my normal time. Did my morning ritual and went out to the farmer’s market to have my morning coffee at “Cafe Gay.” Ironically, I had a funeral to sing at that morning.

Chris Godwaldt, having read the news hugged me and asked me “What are you doing here today?”

My reply was I had no where else to be. This was the truth, I no longer had to be at the hospital daily and quite honestly, home felt really empty at this point.

I sat quietly, having coffee with friends, until it was time for the funeral. I sang dutifully at the funeral, no one in the choir having suspected what I was going through, and found a great amount of satisfaction in allowing myself to grieve while helping others grieve.

I had arranged to meet my parents at Cannon Coffee Co after church, where I sat in the window seat and just was there, quiet and peaceful. My parents joined me for lunch and remembrance while various folks who saw me sitting there popped their heads in to offer their condolences.

I went home and walked the dogs and fell into a fitful and restful sleep for the first time in about a month, despite the uncertainty of my future.

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who am i to deny a dying man his last wish?

Since being checked into the hospital, Larry was on a rapid decline as far as his condition. His kidneys and pancreas had completely shut down prior to entering his hospital and his lungs were under attack as cancer cells replaced healthy tissue. The main thing that lead to his final decline was his liver had completely shut down.

What happens when one goes into liver failure is the blood is no longer filtered and the body floods with all the toxins that would normally be cleaned. One of the earliest signs of liver failure is confusion and lack of ability to communicate. By this time, the best treatment for liver failure (the laxative lactulose) was no longer working and it was determined to keep him comfortable and take no drastic measures to prolong his suffering.

At this point, all that was left of Larry was instinct and the pain as cancer ravaged his internal organs. As his liver was no longer processing his blood, intravenous pain medication no longer would work, so he was on a regime of three medications administered under his skin in 20 minute intervals: a sedative to relax him, morphine to ease his pain, and a muscle relaxant to prevent him from fighting the catheter and the restraints and prevent further injury. These injections occurred around the clock to prevent his suffering and I thank the doctor and staff of Juravinski Surgical Ward in ensuring that he was well taken care of.

The last coherent conversation with Larry confirmed that he was ready to let go and we asked him to, however he kept saying he was afraid and wanted to say goodbye one last time. When asked who he wanted to say goodbye, he could never explain fully. However I suspected who it was.

As I left the hospital to take care of the dogs, I ran into the palliative care doctor and he said the first words he said to me since he told me “seven to ten days.” This isn’t a complaint as the doctor did most of his work through gesture and facial expression – which I found incredibly helpful. There is little that can be said to a dying man and the family who is processing their pain and grief as they watch their loved one fade away. What he asked me was “Is there any more I can do at this time?”

Yes, there was.

During the entire time Larry was in the hospital, I was working with the nurses and social worker in getting permission to bring the dogs in for one last time and I was constantly running into roadblocks, despite bringing in immunization and medical records. Finally I asked the doctor whether it were possible to bring in at least one of the dogs to have one last visit with Larry.

He was with the charge nurse and his flock of interns at this time and his response was quick: “Who am I to deny a dying man his last wish.” He turned to the nurse and confirmed that all staff were to be in a meeting with him at 7pm that evening and turned to me and said, what happens between 7:00 and 7:30 that evening was up to me. Point taken.

I swallowed the lump in my throat and rushed home to confirm my ride up to the hospital to be there just at 7pm. Thankfully, incredible neighbours Jeff and Michele were on the case and I was able to arrange for a drop off and pick up 30 minutes later. I had purchased a simple carry duffel for Sunny and prepared him to go in it, I put his towel in the bottom of it and he seemed to understand what it was for. I did my chores around the house

At 6:45 Jeff and Michele honked their horns and I convinced Sunny to get in the carry bag, while keeping the zipper opened so he could see. Sunny knew that something big was up and he actually settled down and relaxed. When we got to the hospital, I tucked Sunny’s head in the case and proceded to lug this bag with 16 lbs of Sunny over my shoulder, trying to be as low key as possible as we walked to the elevator. We got on the elevator and made our way to Larry’s room, I pulled the curtains tight as I announced myself to Larry.

I said to Larry quietly that I had someone special to see him and he opened his eyes. I put the case on the bed and opened the zipper. Sunny cautiously stuck his head out and Larry’s eyes widened when he saw him. Larry moved his right arm away from his body and Sunny cautiously got out of the bag and sniffed around, carefully creeping up the side of the bed and lying down to rest with his head on Larry’s shoulder and chest.

“Hi Sunny,” Larry moved his left hand across his body and laid it to rest on Sunny’s back. No mean feat as Larry had been non responsive beyond reflexes for over a day at this point. We sat quietly as Larry and Sunny had what was likely to be one final snuggle. I sat in silence watching them together until twenty minutes passed and Sunny began to visibly shake and whimper.

I told Larry that we really needed to go as Sunny was getting nervous and we had to be out of there by 7:30. Larry moved his left hand off Sunny and said “Goodbye Myke. Goodbye Sunny. I love you, thank you” and went back to sleep. I put Sunny back in the bag, zipped it up and kissed my husband goodbye one final time.

Jeff and Michele were at the entrance when we came down and drove us home. I walked Sunny and Chloe as I was too uneasy and didn’t want to be in the house. Finally at 10pm I collapsed in a heap on my bed and went into a troubled rest.

it takes a village…

Over the coming days, I settled into an uneasy pattern of visiting Larry at the hospital.

During this time, I was incredibly amazed at the incredible support we received as we prepared for his final journey.

Leslie Cabot Armstrong and Jeff Cabot Sutton – Wiccan priestess and priest who exemplify “harm ye none” and what it means to live up to the Wiccan Rede. They helped handle Larry’s spiritual needs and were there to support my more esoteric needs as well. As friends, as clergy, as human beings. I consider Leslie and Jeff among my best friends.

Rev. Doug Moore – Laidlaw Memorial United Church – a truly human “Man of the Cloth” who also helped handle Larry’s spiritual needs and support my spiritual needs as well. Doug has been an incredible mentor and guide as I muddle through life and navigate a new calling.

Santa Bob Boyter – Bob was perhaps Larry’s best friend in latter years. Always willing to help out, even if it was just to listen. Since Larry’s passing, he has taken the reigns of Santa Canada and put it in the hands of someone with the knowledge and patience to ensure it thrives. I owe Bob a lot.

Bekah Kristensen – another good friend who was always willing to take Larry for rides in the country or go for a Costco run. With her two boys, Bekah also gave Larry the chance to be a grandfather when his own daughter wouldn’t. She and her family often gave Larry a reason to keep going when little else could.

Ellen Irvine – Larry’s seamstress and good friend. There to keep him company and listen/support him.

Cheryl Lantz – yup, Larry’s ex wife. We tag teamed the hospital time to ensure that Larry was surrounded by those who loved him in his final moments. She didn’t have to, but she really came through – especially when it came to getting his daughter up to visit .

Doug Jones – my best friend since grade 4. I can always count on Doug, especially when the excrement makes contact with the ventilation. We’ve shared pretty much every emotion in the book and last summer definitely ensured that .

My parents – wow! What can I say but thanks? Throughout the entire journey Mom and Dad were there for Larry and I.

My brother, sister-in-law and nieces. Stephen, Dana and girls were awesome, I know I can rely on them for support. I’m proud of Lauren for realizing that she wasn’t ready to handle being so close to illness and death. Hannah, I’m especially proud of as she visited Larry and was strong enough to know when she had enough. The conversation we had in the Starbucks was incredible and helped me greatly.

I’m honoured to have these people in my life and look forward in our further journeys together .

and it begins

A year ago today, Larry and I sat in an examination room at Princess Margaret Hospital, awaiting the oncologist who had been treating him for the past year.

He had survived liver cancer, a transplant, the diagnosis of pancreatic cancer, a Whipple procedure (a surgery where part of the liver, stomach, pancreas and intestine is removed) and several months of chemotherapy.

In April, he had received the news: tumour free. We were back after his monthly follow up CT scan to get the results.

When the oncologist walks into the examination room in tears, one suspects things are not good. “We gave it our best shot…” was how he began, his voice trailing off.

Larry asked if he’d start chemotherapy or radiation, the oncologist said that any treatments would kill him just as quickly as the cancer inside him was. Six to twelve months was the time line given to us.

We left the office shell-shocked, silent, in tears. We made it to the elevators where I vomited into a garbage can. Which is a feat unto itself as I don’t have the physiology to puke.

We sat, trying to figure out our next steps. I did what any confused and frightened kid would do and called my Mom. Somehow in between my hysterics I was able to pass on the news as Larry sat in stony silence.

Somehow we made it home that afternoon. We sat in silence on the go train, just holding hands and my head on his shoulder. I called in sick the next day, trying to assess what to do next.

We contacted our family doctor and made an appointment to discuss the next steps and palliative care. Thus began our final weeks together.

myke’s book club

August Farewell – David G. Hallman

As most of my regular followers know, I recently lost my husband of fifteen years to pancreatic cancer.  The journey experienced by Larry and I has been documented extensively through various social media outlets and I was considering gathering them all and publishing them in a coherent memoir.  I have not yet gathered the strength to handle this task but hope at some point it will represent part of my healing process.

I recently met someone who has been able to share his journey as his husband succumbed to this disease after a thirty three year relationship of their own.

David G. Hallman’s August Farewell is an honest, loving and incredibly moving document of the changes and damage that pancreatic cancer wreaks on the patient and their caregivers, as well as displaying how lives lived in love will beget love and support from those who surround them.

Mr. Hallman’s story paralleled mine in that when the final diagnosis was given, there was very little time left and the focus shifted to providing comfort and relief in their last moments together.  The shared vignettes of of Mr. Hallman and Mr. Conklin’s lives together prior to the diagnosis, set the stage for their final moments together.

Given that my husband’s passing is quite fresh, I found solace in that there was someone who experienced the same fears, the same comforts and the same love as I had.  In reading August Farewell , I found equal opportunity for laughter and tears.  Mr. Hallman’s memoir has helped ease some of my pain, alleviated my fears and offered me permission to take time to grieve.

I for one thank Mr. Hallman for sharing his and Bill’s journey with me.  Thank you for this glimpse into a story I know all too well myself.

an open letter…

Dear Cancer,

 You finally did it.  On August 10, 2013 you took the life of the most remarkable man I’ve had the honour to know.  In the process of doing so, you destroyed a marriage which represented fifteen years of happiness and intense love.

Despite your efforts in the past, attacking his liver, which eventually was replaced due to the generosity of a young man from London, attacking his bile duct, which was removed and systematically treated with poisons, you finally went for his pancreas and got a decent foothold.

Not content with just the pancreas, you took the transplanted liver, kidneys and had began working on his lungs and bone marrow when his health proceeded to fail.  You systematically attacked every major organ in his body until the doctors decided they could do no further and he succumbed to you.

What I’m angriest at is that in July we were given six to twelve months, but you got greedy and took him away from me after only four weeks.  That was fucking low and uncalled for.  My main consolation is that you were so aggressive, his suffering was mercifully brief.  I guess I should be thankful for this small mercy but I really can’t be.

What I am thankful for is the army of people who surrounded Larry (DH) and I during these past few months when we began our final battle.  While Larry didn’t survive, I would not have survived without them.  Particular thanks go to:

Mom and Dad
Rev. Doug
Leslie and Jeff
Steve and Dana
Doug and Tara
The 3 Davids (Bartlett, Milmine and Jacobs) – further comments about these kings of men will follow in a future post.
Steve K (the urn is beautiful my friend, I am eternally grateful)
Santa Bob
Jeff and Michele
Alistair and Nicolle
The fabulous Donna B
Steve G, Michael W, Rob F, David R, Rich F and Lorne G from HGMC
Mark M from the Hamilton Spectator for the lovely piece on Larry
Dave K at Mixed Media, Melissa at the Grey Room, the gentlemen at Sealed Art and the ladies of Laidlaw Memorial for making Larry’s memorial something I remember.

Without these folks and the many others who stepped up to the plate with their love, concern and support, I doubt I would have survived these past two months myself.  They made the sheer hell you put Larry and I through at least tolerable for me.

But, guess what cancer?  I declare war on you!  I have already started fundraising to support Princess Margaret Hospital through the photographs Larry and I took during our final battle against you.  While he may have lost, we are going to use these documents in my continuing war against you!

I’m no longer the scared young man, afraid of you!  I will continue to support others who maintain the fight to defeat cancer.  You took my best friend, you took my partner, you took my husband.  I will continue to support the fight you as long as I draw breath.

Seriously cancer, Fuck you!

Your enemy,

myke

yup…been quiet around here lately!

And I ain’t about to apologise for it!

People have asked me recently why I’ve been so quiet and haven’t blogged.

It isn’t because I haven’t had a lot to say, because I have.  It’s mainly because I try to be a positive person on my blog and provide information to enlighten and entertain.  As of late, I haven’t had a lot to be positive about.  There is just too much negativity going on around me and it has been getting me down over the past few months:

  • While I am enjoying the challenges of singing some of the most beautiful classical music ever written and being paid for the honour to do so, I continue to struggle with the politics of organized religion and my attempts to set aside the past wrongs and damage that occurred in my life under the guise of Christianity.  I oftentimes view my Christian friends with a mixture of scepticism and envy…sceptical of their views, knowing how the power that society grants those claiming to be G*d’s messenger can be abused and envious of their ability to let go and put their faith in something so freely.
  • I recently applied for (and won) a promotion at work, which was placed “on indefinite hold” due to my current team being understaffed (since September, we have had 4 people leave our team due to long term disability or transfer to temporary assignments), due to a current hiring freeze.
  • For the first time in five years, I requested one week of vacation time during the summer months.  Of the five days I requested, two non-consecutive days were approved.  So much for going on tour.
  • DH continues his chemotherapy for treatment of pancreatic cancer, when he is healthy enough to have it, however the ravages of the medical poisoning have wreaked havoc on his body and he has required a blood transfusion and a number of weeks off from treatment, making his 6 month ordeal into an 8 month plus ordeal.
  • Until 2 weeks ago, DH also had the looming threat of a tumour on his lungs, possibly requiring further surgery and a review of treatment.  However that was ruled out when the spot they discovered on December 22nd (Merry fucking Christmas) had disappeared by February.  However that provided us with almost three months of uncertainty and stress that we honestly did not need.
  • Our neighbours are currently struggling with their son’s health.  At eighteen years of age, he caught a bad cold around a month ago, which led to a viral infection which attacked his heart.  As of two weeks ago this otherwise healthy boy is now in the ICU at Toronto General Hospital awaiting a heart transplant with an artificial pump circulating blood through his body, keeping him alive.  ALL FROM A BAD COLD!  If I haven’t nagged you enough already through other social media sites, please go to The Trillium Foundation and sign up as an organ donor.
  • This same family also just had to deal with the loss of another beloved family member when they had to put their 14 year old cocker spaniel to sleep this past weekend.
  • Recently a co-worker lost her baby, less than one week away from her due date.  She has miscarried once before.

So mykesworld has been kind of a dark place as of late.

Don’t get me wrong!  A lot of good stuff has occurred in my life and I am thankful for it.  I still maintain my health, I am lucky to have the love and support of DH and his continued strength as he fights the worst motherfucker of an illness a second time in his life.  I have incredibly supportive and patient friends and family whom I love and truly respect.  I still have a job that covers my expenses and allows me the luxury of pursuing my musical career in my own terms.  I am a VERY thankful and lucky person indeed!

However it has also been a dark and introspective period for me, where I’ve been focusing on the folks around me, providing as much love and support as I can for them.  I’m just trying to avoid bringing other people down in the meantime!