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.

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!

happy freaking holidays from mykesworld

Dear friends, family and readers,

It’s hard to believe another year has passed in mykesworld, however it has indeed!  And what a year it has been!

Let’s start with the excrement hitting the ventilation last Christmas Day when due to a comment made by a relative, my family was pretty much irrevocably split apart and the chances of any “full family” gatherings dashed for good.  What was supposed to be a lovely couple of days for DH and I at my parents’ turned into a sullen and quiet ride home on Christmas night.

Followed by a trip on the GO train to my parents’ where I had to open up about some ugly things in my past I had hoped to keep them sheltered from and how I am trying to be a better person despite how fucked up I am.

Let’s just say after those few days, I had seriously high hopes for a happier New Year!

And what a New Year it was, I finally had made quite a bit of headway in finishing off the writing and getting a good chunk of recording done on my first CD as a solo artist.  I had a direction inspired by a wonderful work of art by a local Hamilton artist and had even begun to think about how I could produce and distribute this work that was undeniably “me”.

Balderdash and Humbug also were in the studio to record the follow up to Jest In Time For Christmas and it’s a good one, just requiring one final piece (a solo piece by yours truly) and mastering.  We even had a release date scheduled and party arranged.

Work was going well and I was thriving on a compressed work schedule – four days a week, 10 hours a day with Wednesdays off.  I had settled into a healthy groove and had my case load under control, essentially getting a mid-weekend, where I could focus on life, art and my love, DH.

We also had incredibly happy news in that DH had secured the contract to portray the man in the red suit at the Toronto Eaton Center during the holiday season, in order to handle Skype with Santa and Storytime with Santa duties.  He was ecstatic and greatly looking forward to being able to share the joy and spread the spirit throughout November and December.

However this was all scuttled in late June by the insidious disease cancer.

In late June, DH began experiencing an incredible amount of itching which our family doctor initially thought was due to an allergic reaction.  However after two weeks of excruciating and increasing discomfort, they ran blood tests and noted that his liver (the transplant organ) seemed to be failing and he was going into organ rejection.  He was admitted to the hospital where it was determined that the liver was failing due to a blocked bile duct.

During the surgery to relieve the blockage, the bad news came, the blockage was a tumour and it was cancerous.

Further surgery was required and the surgery planned was a brutal operation that will remove the bile duct, part of DH pancreas and part of his stomach.  If you want to learn more, look up “Whipple Procedure” and try not to shudder too much.

The surgery was scheduled for September 19th (precisely 3 days before the Balderdash and Humbug CD release) and we started planning for whatever the outcome would be.  I cancelled the CD release so I could focus on being there for DH and requested I be returned to a regular work schedule so I can focus on life at home and get into a regular groove, especially noting I was spending a LOT of time in Toronto.

DH spent two weeks in Toronto General Hospital in July and 10 days there in September.  I have nothing but praise for these people for making his stay as pleasant and trauma-free for both of us as possible.  This is where I also re-thank the folks who have blessed us with their love and support throughout both ordeals.  We settled into a tenuous pattern of sorts, awaiting the next step.

Let’s get this out of the way:  it was pancreatic cancer and we were lucky it was caught so soon as if it had moved into the pancreas, the prognosis would have been far worse than the hand we were dealt.  However chemotherapy was inevitable and his plans to work November and December were not going to happen.  For two reasons:  he was losing weight like nobody’s business and his energy and stamina were going to be unpredictable due to chemotherapy.

Prior to him exhibiting signs of illness, DH weighed 220 lbs.  As of this date, he weighs 138lbs, which on his frame of 6 feet, 3 inches is positively emaciated.  His energy levels are rough and unpredictable, often requiring a nap in the afternoon, not to mention requiring to stop all activities on Tuesday afternoons until Thursday or so for his chemo treatments and the subsequent illness and general crummy feelings.  In other words, he’s hardly jolly and plump looking or feeling.

We had settled into a tenuous pattern of living where he would go for blood work on Monday mornings, into Toronto for chemo on Tuesday mornings and then doing whatever we could during the rest of the week.  While going into Toronto isn’t optimal, this blog posting explains why the local cancer care center here in Hamilton wasn’t our choice.  This tenuous pattern continued until December 11, when we went to Toronto for what we thought was going to be our surgical discharge appointment.

How wrong we were! 

Two weeks prior to this appointment, DH had a CT scan in order to get a baseline for the oncology team to determine how he’s progressing.  The surgeon got a look at the CT scan and informed us that there was a new “nodule” that had formed on DH lung and that it wasn’t there during the surgery and subsequent scans in September.

It could be benign, but as it went from non-existent to visible on a scan in just over 2 months, that was quite unlikely.  An emergency appointment with a thoracic surgeon has been arranged for a laparoscopic surgery to remove the nodule and then biopsy the results.  Best case scenario is that it is benign, next best is that it is pancreatic cancer that has miraculously missed the liver en route to the lung and we can continue chemo as previously scheduled.  Worst case scenario is that it is our old friend liver cancer that has reared its ugly head and we have to revisit chemo/radiation options.

So 2012 started with great promise and ended up squarely in the shitter, much like 2008 and 2009.  I guess three good years in a row is too much to ask for.  My Christian friends commented that God only gives us what we can handle.  I’d just like a year where my (and DH’s) tolerances aren’t being tested to their limits.  I can’t help but think of the biblical book of Job where God turned Job over to Satan to show how strong faith can be.  Well, I doubt I’m as strong as Job folks…

Here’s hoping that 2013 ends this cycle of cancer in our lives and allows DH and I to move on and live a long, happy and healthy life together.  Please, I’m practically begging this!

So yes, Merry Fucking Christmas indeed to all and to all a good day!

and the beat goes on…

Between rehearsing and handling organizational tasks for the Hamilton Gay Men’s Chorus (come to our first concert “Songs for a Snowy Evening” on December 1st, 2012!), rehearsing with the church choir for our choral (December 23, 2012 at 7:30 pm) and various other holiday services, struggling with work issues and dealing with DH’s health issues, I’m having just a dandy time here!

DH is scheduled for 6 month of chemotherapy to treat his pancreatic cancer; the chemo process will entail the following steps on a weekly basis for three weeks out of four:

1. DH registers at the chemo clinic.
2. The chemo nurse takes a blood sample and checks DH‘s blood for white cell and hemoglobin count. This takes half an hour for them to run the labs.
3. DH takes his pre-chemo pills, including a steroid, anti-nausea medication and an anti-inflammatory.
4. Should DH‘s blood counts be acceptable, they order the treatment from the pharmacy. This takes an hour to mix the appropriate blend.
5. Start infusion of chemotherapy. This takes half an hour for the infusion through the IV line.
6. Rush home as quickly as possible, so DH can be as comfortable as possible when the medicine hits his system.

So far the only issues he’s had are fatigue and flu-like symptoms (weakness, aches, chills, fever). However there is a cumulative effect, they are still poisoning his body and the surgeon commented that around month two or three is when you really begin to feel “shitty”.

The chemo clinic is in Toronto, one hour away, there is a cancer care center here in Hamilton, however we had appointment there on Monday – the doctor we saw just graduated in June and, needless to say, both DH and I were a wee bit anxious of having a youngun with no experience handling his treatment. While his treating oncologist will still be the doctor in Toronto who works with the transplant clinic…we were unsure.

The decision was pretty much made for us when the doctor arrived 2 and a half hours later than the scheduled appointment date and lamented about how complex DH’s case was. During the oral history and discussion of the case, the doctor visibly rolled his eyes twice at DH’s complaints and also was quite sarcastic at times. They had drawn blood in case of a possible treatment on the next day, however the doctor all but confirmed he would be unable to get permission to release the required medication and that he should continue with his scheduled treatment in Toronto.

BOTH THE DOCTOR AND THE NURSE VERBALLY AGREED TO RELEASE THE BLOOD LAB RESULTS TO THE TORONTO CLINIC SO DH WOULD NOT HAVE TO HAVE BLOOD DRAWN AGAIN.

When DH got to the cancer clinic in Toronto, they did not have the blood lab results and they requested them once again from the Hamilton clinic. Two hours later, they still were not sent. DH called me, frustrated, and asked me to call. I attempted to contact the nurse at the clinic and left several messages imploring them to have the blood tests released. Moral of the story, I convinced DH to let the Toronto clinic draw more blood and he finally got his treatment, getting home after 8pm (this was from a 2pm clinic appointment).

I attempted to contact the Hamilton clinic this morning and they refused to let me leave a message as it wasn’t an emergency. I’d rather leave a message as I do NOT wish to speak to them at the moment as their refusal to release the information caused a needless test to be redone and required further discomfort to DH. Whither “do no harm”?

On the plus side, my niece who is going through piano lessons, passed her first examination with the Royal Conservatory of Music with first class honours and was invited to play at the provincial showcase last Saturday. Yes, as the proud musician uncle, I went to see her and enjoyed seeing her exhibit her talents and the result of a lot of hard work. I’m very proud of her!

I’ve naively agreed to perform carols for the Ottawa Street BIA (right by Cannon Coffee Co and Hat’s Wear It’s At) for their evening street festival this Friday – come to see me if the weather is agreeable!

The Gay Men’s Chorus first concert is this Saturday at the First Unitarian Church here in Hamilton. I’m singing lead solo in “Still Still Still” (a beautiful Christmas Carol), playing guitar for a song I arranged for the chorus (http://www.singmerrychristmas.com/ for the original song and story – the songwriter donated it to us) as well as singing in the chorus proper and assisting the accompanist on various keyboards…we are also doing the World AIDS Day Vigil on December 3 and the St. Catherines LGBTQ Winter Solstice service on the 21st.

Lah dee dah di deeee!

weekend update

So we’ve had the surgical follow up and visits with the oncologist. News has been…well…interesting to say the least

· DH‘s healing is very well, the surgeon was not concerned about his various aches or pains and will clear him for physiotherapy/rehab in 2 weeks’ time.
· DH now weighs 148lbs (which at 6 feet and change is FUCKING thin), but again, the surgeon wasn’t concerned about this after reading DH‘s food diary. He’s been cleared to eat whatever he feels like/whatever he can as he’s hungry. The surgeon suspects he’s “bottomed out” weight-wise and should slowly rebound – until chemotherapy starts)
· The tumour was 3cm (approximately 1.25 inches) in diameter and completely contained.
· It was diagnosed as being full-blown T1 pancreatic cancer
· Of the 17 lymph nodes removed, 7 of them had cancer or “pre-cancer” cells.
· Full diagnosis is T1 N3 Pancreatic Cancer, localized to the head of the pancreas and bile duct.
· Full confirmation is Stage 1 cancer.

However

· The cancer cells were contained to the pancreas head and bile duct and not found in the margins of the portions of the pancreas, duodenum, bile duct or the stomach that were removed.
· There were also no “pre-cancer” or abnormal cells present in the other tissue samples either
· What this means:
· DH has been brought into our cancer treatment center for treatment of gastrointestinal cancer.
· We have been assigned to a medical oncologist, nurse practitioner and social worker
· Chemotherapy for at least 6 months is a given. This will be in the form of a weekly injection every week for 3 weeks, then a 4th week off.
· They are trying to get him handled at the local cancer center, however due to the nature of the cancer (pancreatic), they wanted to get him treated ASAP so it may have to be in Toronto at the main Canadian cancer center (Princess Margaret – he is officially a patient there now as they are associated with the transplant clinic regardless). The oncologist’s (who is 76 years old) comment was “One does not fuck with pancreatic cancer.”
· Chemotherapy will start next week in Toronto, I’ve arranged transportation with LCA for this week and the Canadian Cancer Society in the weeks to come.

So not good news, but not bad news either. The chance of a cure with surgery alone is 25%, the chance of a cure with surgery and chemo is 75-85%.

The long and winding road continues!