The Simpson Blog

Today was my last day at work, and I'm okay with that

2019-06-26T00:35:00.002-03:00

Today marks a weird spot on the calendar for me. It’s one of those landmarks that really doesn’t mean anything, other than to illustrate the weirdness of time and how we feel it.

As of today, my son Gordon has been without his mother longer than he was with her. The length of time Amanda has been gone is now longer than the length of time we were a family of three. Sometimes it doesn’t feel like it’s been that long, but that dangblasted calendar tells me it’s almost three years. I have not said a word about it to G, but tonight, for the first time in a long time, he pulled out the Missing Mummy book for bedtime.

Today was my last day in broadcasting for a while, as far as I can tell.

I spent the past five years as Program Director at Newstalk 1290 CJBK in London, Ontario. And in recent years, I was also the noon-hour show host, afternoon news anchor, a commercial voice guy, TV news promo voice guy, and more.

Also in the past five years, I’ve bought a house, endured renovation mayhem, supported my wife through terminal cancer, lost my wife to cancer, raised the most awesome little boy ever so far, crashed a car, sold a car, bought a car, and hey I have a girlfriend now, too. (Yeah, we’re happy and it’s pretty awesome.)

Basically, I’ve been going non-stop since little dude was born. The sloth version of non-stop, admittedly, but non-stop.

My health requires attention. Wow, that’s the most passive way I could’ve written that, isn’t it?

I must pay attention to my health. That’s better. I’m fatter than ever, my cholesterol sucks, I’m prediabetic, my shoulders and knees feel like I was an extreme athlete at one point and I am certain I never was, and I was dangerously tired a lot of the time.

I’ve been on CPAP therapy for about a month and a half now, and it’s obviously helping some. But I need to be eating better and exercising. And I’ve been unable or too unwise to make time to do that. So I’m making time to do that.

I count my official start in broadcasting as early 1994, when I started at 680 News in Toronto. So that makes a nice round 25 years. I could, I suppose, also include five years of tremendously educational volunteer work at Rogers Cable 10 in Newmarket and call it 30, but 25 is enough of a landmark.

Five years of dramatic change in my personal and professional life can fly by like a flash of lightning in the hot summer sky, so I’m not going to pump up my service time to make a point.

I’m not sure what the point is, other than that I assure you this is not a rash move, a sudden reaction, an uncalculated risk, or a brilliantly devised strategy. It’s kind of open-ended by design.

I’ve been listening to the audiobook version of Neil Peart’s Ghost Rider: Travels on the Healing Road, which chronicles the former Rush drummer’s grief-fueled motorcycle journey following the death of his daughter in a car wreck and his wife from cancer.

The process he went through is inspiring me.

I am also buoyed by the successes of some friends and colleagues who also left the industry they once felt would be their lifelong dancing partner. I’m going to be drawing on their wisdom, and the wisdom of many more people I’ve yet to meet, and hopefully some folks I haven’t seen in too long.

I’m not looking for work right now. I’m going to spend the summer following some ideas I have for personal development and pursuing wisdom in a sector I’m imagining starting a business in. If it all sounds very fuzzy, that’s fine. I’ll be bringing it into focus, all in good time.

My thanks go out to the talented, passionate, hard-working people at CJBK and the many people throughout Bell Media who make the station work. It’s been my privilege to lead and serve for the past five years. I learned a lot. I tried hard. I wish everyone there great success. You were nothing but kind to me and I hope I was good to you, too. And, thanks to the listeners, even the ones who thought every thing I did was the Worst Thing Ever.

That’s about all I’ve got right now. I’m sure as soon as I click Publish, I’ll think of six more things I was intending to write about. But there’s always more to write about. That’s what makes life so exciting, isn’t it?

A certain measure of innocence

Willing to appear naive

A certain degree of imagination

A measure of make-believe

A certain degree of surrender

To the forces of light and heat

A shot of satisfaction

In a willingness to risk defeat

Celebrate the moment

As it turns into one more

Another chance at victory

Another chance to score

The measure of the moment

Is a difference of degree

Just one little victory

A spirit breaking free

One little victory

The greatest act can be

One little victory

A certain amount of resistance

To the forces of life and love

A certain measure of tolerance

A willingness to rise above

Rush - One Little Victory

A request, as we reach two years

2018-07-09T22:27:00.001-03:00

Wow, long time no write.

I didn't enjoy this past winter. I was certainly in a long slump. Things were very challenging at work. Gordon was awesome, as always, but I was just in a sustained funk from last summer on. And I'm not sure I'm all the way out of it yet. I'm still largely in quiet hermit mode, but have been making progress at resuming social contact. Little dude and I have a very busy summer that will go by in a flash.

This Thursday will mark two years since Amanda died. I still replay the events of that night in my head almost every day. I'd like to not. Sometimes it feels like forever ago, but sometimes I'm right there all over again.

Hey, can I ask for your help with something?

Two years ago, so many wonderful people told me that if there was anything they could do to help .... Well, I don't ask often. And I should've asked more. And I should ask more even now. I'm still not comfortable asking. But I'm asking for this.

I put out a video and another call to action last year, asking people who knew Amanda to record a little video that I can use in a larger biographical video for Gordon. It's been two years now, and his memories of her continue to fade, as do mine, I'm sure. Probably for you, too. My intention was to capture peoples' memories while they were still fresh. I think I mentioned such a thing at her memorial service?

Can you guess how many videos I've received since that call to action on Facebook?

None.

I was hoping to have something reasonably complete to give to Gordon this Christmas. As it stands now, I have very little to include. Just what I've gathered and shot myself, and one submission from the very first time I asked. (Thanks, Chris!)

Please, if you can, make something. I can help.

Here's the #mommydoc main web page, with notes on how to shoot, what to shoot, how to send it in, and more.

For everyone wondering, Gordon is doing great. He turned five. He's reading. He's doing math. He's still topping the growth charts. He did great in school. And he's still an all-around wonderful kid.

Thanks to everyone who still checks in here from time to time.

Meh. Extended Meh.

2017-12-10T22:24:00.000-04:00

I haven't posted here in quite a while. There are a few things I haven't done in quite a while. For a while, I've been kind of meh.

In late August, Gordon and I went for the long-awaited trip to Nova Scotia. It was an epic journey, three years in the making. We visited places he'd only heard about. We spent time with friends he hadn't seen in more than a year. We took Amanda's ashes back to the ocean as she requested.

Gordon leaping rocks at Peggys Cove, NS. Click to embiggen.

We were there for a week and were on the move almost every day. We put 1000 km on the rental car in between flying there and flying back.

It was excellent, but it was also exhausting. And I found myself different in the weeks after.

Before, I was going out. I was being social. I was busy and optimistic.

After, I seemed to drop contact with almost everyone. I thought I was just tired, then I thought I'd shifted into some different gear of creativity or contemplation. But the months have worn on and I'm still not quite back to where I was. I'm meh.

But it's not a deep, dark, miserable meh. It's just a little too alone and overwhelming for my liking. I'm working on it. I haven't been 100% unproductive -- stuff is still getting done. Gordon started school in the fall, for example, and has been doing great. I'm still a passable success at grown-up living, but I know I'm not doing an A+ job in some areas.

I just wanted to make a little appearance on my own blog and say Gordon's doing great, and I'm kind of meh.

I've also been working on another project. I hope to reveal this in the coming days. It will be a call to action to people who knew Amanda. Stay tuned.

Hard to believe it's been a year - but it has

2017-07-12T11:46:00.004-03:00

One year ago today, we lost Amanda.

Time plays tricks on all of us. We can think "that was so long ago" at the same time as "it feels like yesterday." I run into this all the time with Amanda's death.

Yes, it feels like just yesterday, or last night, or later today, that Amanda collapsed in the kitchen and died after that long, brutal battle with ovarian cancer. But every day has ticked by at a pace like any other, and it's been a whole year of those days, with incremental and sometimes revolutionary change.

As I move about our home, it's hard to fathom that she's been gone a whole year.

Amanda's garden awakens, early Spring 2017.

Many of the decorative items she carefully arranged throughout the house are in the exact same place as the last time she touched them. She had the vision, not me, so I've been reluctant to disturb her decisions on what looks good and works.

In other places, I'm reminded that it's been at least a year since something's been in place. Like the fully-stocked baking pantry. A big jar of spelt flour in there HAS to be at least a year old, because I don't even know what it's for. I've been gradually throwing out food items, now that I'm easily reminded that they're really that old.

As much as I've tried to tidy up the house and make it mine and Gordon's, there are still oodles of things that are exactly as she left them.

Her garden gloves and trowel have been hanging from a hook just inside the back door as though she's going to go right out and plant something. Her coffee mugs are still plentiful in the cupboard. Her electric toothbrush is still in the bathroom drawer. The July 2016 calendar she made is still on the refrigerator door. There's a great big Mike's Hard Cranberry Lemonade on the top shelf of the fridge waiting for her to drink with friends. Just recently I decided to throw out a bottle of water in the fridge that still had the label on it from when hospital staff would stash them in the fridge at the nurse's station.

Meantime, I just sold the RAV4 she had so many adventures in, from bringing Gordon home from the hospital the first time, to traveling across the country to move from Halifax to London, responding to nerve-wracking child welfare investigations in Nova Scotia, or going on adventures with friends. The car became a liability and I've moved on to a new one.

It was a year ago that I had to go into Gordon's bedroom and tell him that mommy died. He and I have done a lot of processing and remembering since then, and I know we're not done. We may never be. Gordon and I went to a parents-and-kids grief group in the spring. I can't say it did a whole lot, but it was an anchorpoint for a lot of discussion at home. He remembers more about that night than I thought. And he has a million questions. I've tried to answer them honestly.

He's a different boy. The day after she died, we went for a haircut. I have the "before" photo and see Amanda's moppy-haired little boy. Ever since then, he's grown up a whole lot. He's so amazing that I can't even write the words to explain it. He's smart, kind, loving, curious, and all the things Amanda wanted so badly for him to be. She wanted to survive long enough to walk him to his first day of Junior Kindergarten this fall. I'll be doing that instead.

Our latest haircut. He's grown so much.

I'm never sure how much he remembers his mom from actual memories. I talk about her every day. Too much, probably. But I want to keep the memories he has alive, and curate the partial memories he has, to build a loving, real memory of his mother. Not that she's being made out to be a perfect saint. I was telling him about the reason I close the living room curtains every night -- because she told me I had to. He paused, thought, and said "Mommy was bossy sometimes." Yes, she was. That's just part of who she was.

As for me, I've been mostly okay. As you've seen here over the months, I'm committed to moving forward even when I don't know where I'm headed or whether my head's on straight. I'm at a point in my personal life where I'm mostly making it up as I go along -- and I'm ok with that. I'm feeling a clash between "older/wiser/smarter" and "I have no idea what I'm doing" -- and that's kind of fun.

I did have an unexpected grief attack yesterday. I've been continuing to declutter and tidy up, and happened upon what looks like a bag of stuff Amanda picked up from a gift shop or antique store on one of her adventures. Some of it was an easy decision to donate to Goodwill. But I found a "hopes and dreams" jar with a cork lid. And I somehow remembered it being intended for Gordon. But I couldn't remember exactly what for, or how it worked. I took it upstairs and put it on a shelf above Gordon's bed, somehow thinking that his mom wanted him to have a place to keep his hopes and dreams safe. One little sign of Amanda thinking about his future; a future she can't be here for. And then I just lost it, wailing and unable to settle for a few minutes. I don't have a lot of those moments any more, so it surprised me.

Amanda's wishes for Gordon still influence how I parent him. If she could give me a review, I'm sure it'd be full of nitpicky complaints, but she'd be proud without saying so. Gordon is going to soccer every weekend -- she wanted him in. He's been enrolled in Kindermusik. He has friends at daycare. He swims. He's close with family. He has manners. He wears decent-looking clothes. I don't have her wisdom on call any more, which is a real pain when it comes to things that were "her job" like buying him cool clothes, remembering relatives' names and birthdays, coming up with meal ideas .... but I learned a lot from her and try to use it. She's in my head and in my soul and I like to think I'm a better person for it.

I'm trying to be a good dad by living my life and attempting to be happy. I'll say that I've begun dating. After sharing my life in public in horrifying detail for so many years, I'm going to exercise my right to have a little privacy in this regard. I don't want to make dating decisions based on how it would play out on the blog. Thank you.

Gordon and I are still hoping to trek to Halifax in August, and still hoping to record some kind of video memory when there. I hope to see some people and places that bring back that feeling of love and peace, and return some of Amanda's remains to the ocean in accordance with her wishes.

Being completely honest, I still struggle with Amanda's memory every day. I'm still processing, even a year later. Obviously I loved her a lot. But even aside from the cancer struggle, things were complicated. I have conflicting feelings that have yet to reconcile into a place of calmness and peace. That's stuff for me to work on, over time. Time keeps on ticking. Time, by itself, heals nothing.

For everyone who's remembering Amanda today, thank you. So am I. We've all been through an interesting year. I can't pretend to understand your journey, and I can only offer a tiny slice of insight into mine. But I'll say that I'm optimistic and even excited for the future. She'll always be a part of me.

Thank you to all the family and friends who've been such a help so far. I still need you. I'm still that mostly-hermit guy who takes too long to say yes to plans, and is embarrassingly lousy at being the one to reach out. But I still need you. I'm functional but still not whole. Everyone's got their own lives to live, and I know I don't always make it easy to stay close, but you have to know I really appreciate all the help that Gordon and I have been given. Love you.

Gordon turns four and has questions

2017-04-03T17:33:00.004-03:00

Gordon wanted to know where mommy went.

Not what happened to her body, but where SHE went.

We celebrated his fourth birthday this weekend with three gatherings. One at our house with his little friends. One at nana and grampa's house. One in Stratford with the Simpson clan.

Four years of birthday parties

The big party for the kids was a success. I'd never planned such an event. Thank goodness for the Internet, where I found a Martha Stewart article that laid out the basics. And thank goodness for Party City, which had a ton of Transformers party stuff ready to buy. I wasn't feeling well, but managed to pull it off. Thanks to sister Shannon and SIL Amy for being the Designated Adults who helped in wrangling and last-minute logistics. G thought the whole event was kind of loud, but he really enjoyed it. And I feel like a winner for making it happen -- some of the other parents even chimed in that they now know what goes into a kid's party, since they were as clueless as me! Great!

Great time at nana's, too, with corn chip casserole, family, and G got a bike (!!) to enjoy this summer!

Sunday, we made an attempt to catch the Swan Parade in Stratford, but were unable to find parking and missed the whole thing. I was still feeling rotten. But, we had a fine time at granny and papa's. Well, aside from when he started coughing on his own saliva and ended up barfing a little. I caught it in my hand and ushered him from the carpet to the tile. Gross. But I prevented a spill. Years of having cats have served me well.

G fell asleep on the drive home. It was a long, busy weekend for him. Me too. When we got home, I brought out his present from me: Buzz Lightyear. He watches one of the Toy Story movies about three times a week, so he was very excited. He loves ALL the gifts he got. He knows he's a very lucky boy.

But at bedtime, things got a little weird. We watched a show and read a story, as usual. Brushed teeth. Then it came time for me to tell him an improvised story.

He asked me to cradle him like a baby and rock him. The story he wanted was: how mommy died.

He wanted details. He asked specific questions. Questions he never specifically asked before, about details I never shared before.

What exactly happened? What killed her? What did she look like dead? Were her eyes open? Did she turn brown? Did all of her blood come out? Where did they take her body? What happened to it? Why didn't you tell me she was going to die? I wish you had. When exactly did she die? How did you know?

And where did she go? Not her body -- he understands that some people are buried underground and in her case, she was cremated (I dumbed it down). He thinks it's mean to do that to someone, so I'll need to revisit that. But where did *she* go? Mommy, the person, not mommy, the body?

I wasn't sure how to answer. Someone at daycare recently told him she's always there, that she's "up there." Now Gordon thinks mommy is in the drop ceiling at daycare. Not cool.

I didn't have a great answer for him. I said, "Gordon, when you turn off the light, where does the light go?" Nowhere, he says, it just turns off. "And when you shut off the TV, where does the TV show go?" Nowhere, he says. It just stops. I left it there.

There's a program in London called PATCH -- Parents And Their Children Healing -- offered through the Good Grief Resource Centre. I've known about it for a while, but Gordon seemed to be handling things very well, so didn't connect with them. But I asked him during our conversation if he'd like to meet with people whose job it is to talk to kids about people dying. He was all for it. So, we'll explore that.

I shouldn't be surprised that he came out with all of this all of a sudden. He's been making slight allusions to death and dying lately, and has been close to tears from time to time when talking about mommy. He's even used it to try to manipulate me at bedtime, "crying" about wanting mommy, then telling me what would cheer him up would be to play a while longer. Not nice.

But really, it's been on my mind, too.

His fourth birthday is also the fourth anniversary of Amanda's cancer being discovered. Four years, in life, is not that long. But it's been a roller-coaster ride through hell. It's been long and short. It's been an endurance challenge and a joy. It's been the greatest and worst times of my life. And I'm sure he notices her absence.

His first birthday was in Halifax with friends and family with the famous cake-smash. His second was in London with another of mommy's banana cakes. His third, last year, was cupcakes in hospital with mommy and a trip to the indoor playground with me. This year, mommy's not here. He's getting enough perspective to look back and see what's changed.

Sometimes he's such a sophisticated little dude!

Me, I'm starting to realize how awful things were. I think this'll be worth a whole separate post, but I'm having short peeks of clarity where I can look back at the past four years and see how horrifically bad some of the times were. In the moment, it was about just going on. It's cancer? Gotta keep going. Treatment is hard? Gotta keep going. Cancer's back? Gotta keep going. Moving? Keep going. Amanda's cut wide open and has feces leaking into her insides and being sucked through the surgical wound with a vacuum pump? Gotta keep going. She died? Gotta keep going.

How .... .......... horrible. I'm starting to wonder how much of the positivity and bravery that people have complimented me on throughout this ordeal was a tunnel-vision focus on survival and making life decent for my little boy. How much was I able to compartmentalize and shield myself from the unthinkable things I had to face each day?

If I was somehow able to seal it all off to prevent my brain and soul from shattering from the sadness and horror of it, well, I think the seal is starting to crack. I hope it drips out slowly and not in a deluge. Again, I think I'll come back to this in future.

For now, back to the positives: Gordon is four now. He's amazing. He's a wonderful person. I'm proud to be his dad. I'm privileged to share my life with him and his with me. I love him so much. And I know I need to take better care of me so I can take the best care of him.

Chugging along through a slump

2017-03-08T12:52:00.002-04:00

Gosh, I haven't posted since before Christmas.

I got through Christmas. I put on a good Christmas for Gordon. Maybe a great Christmas. But I also got a nasty cold and came out of the holidays in a funk.

As you've seen here on the blog, I was full of HEY, LIFE! and WOW, OPPORTUNITY! and BLANK CANVAS! sentiments for months. But then I just fell flat and seemed to lose interest in everything. Social life, self-care, home improvement, good food, personal finance, hobbies. It just all went plop and I didn't really dig doing anything any more. Thank goodness for friends and family asking me to come out and do stuff.

Now, I'm not one to shirk responsibilities when others depend on me, so I'm lucky that others depend on me. Business has been picking up at work, so that's good. And Gordon is my inspiration to keep things interesting.

We got out and about to some fun stuff, including an overnight road trip to Hamilton to see Paw Patrol Live.

Something weird happened at that show. The performance began, and soon they got to the big theme song, with all the pups on stage singing the Paw Patrol song.

And I found I was crying.

WTF? Crying because it was beautiful that I was in a theatre beside my little boy, blowing his mind with a live stage show? Crying because his mommy should've been there too? Crying because I had sadness bottled up and pushed down? Crying because I was so bloody tired? I don't know. It was weird.

I also went to Toronto to see comedian Louis CK with Michael Hainsworth. What an amazing performer. He's just so good.

And, some crappy stuff happened.

One day at work, a colleague was so funny that I doubled over laughing and slammed my head into the sharp corner of a desk. Same day, Gordon got bonked in the head by a careless preschooler with a shovel.

Another day, coming back from an outing with G to the London Children's Museum, I crashed our car. Not a big collision, but it disabled the front left wheel. Repairs would cost more than the car was worth, so I donated it to a local charity. Our other vehicle also needs more work than it's worth, so we'll be car shopping.

I've had other ups and downs. Some more bloody injuries -- slicing a piece of my thumb off while unboxing a Christmas present for G, gashing my shin open on some glass in the basement. Wins include attending a Big Wreck concert with a friend, after having seen the band several times with Amanda. She would've loved it -- singer Ian Thornley's voice was the best I've ever heard. And I build a brand-new PC for video editing. This past weekend, I took G to Super Hero Day at a local mall and showed him that even if what you love is dressing up as Spider-Bat-Man, there's a whole bunch of people out there who also like what you like. Life lessons.

Still, it feels like I'm treading water.

Time continues to pass since Amanda died. I think it was last month that the 12th came and went without me realizing it was the month-anniversary. There will be more moments like that where I straddle the line between "this just happened" and "this happened some time ago."

Big things are on the horizon, I know. I've been registering G for junior kindergarten. We need a new roof on the house. A kitchen reno is possible. The yard will need to be cleaned up for spring so Amanda's garden can flourish again. And yeah, I need to buy a car.

I'm back to getting the house tidied up, bit by bit by bit. As much as I put away, gave away, threw away after Amanda died, bits and pieces of our old life are still everywhere, just everywhere. Her electric toothbrush finally went into a drawer this week. But the drawer still has her hair ties and makeup brushes. I'm finding food in the pantry that I know I'll never use. Spelt flour? Nah, not gonna happen. There's a bottle of water in the fridge from her time in the hospital one year ago. Still has the imprint of her hospital card on it.

G has been good but recently opened up about the night Amanda died. He said he knew she was dying when he heard me calling out to her and she wouldn't answer. Then he heard me call 9-1-1 and the police/fire/ambulance arrived. He said he felt sad. Until a few nights ago, we'd never talked about that.

He's confessed to having a hard time remembering mommy. He said he can remember her smile but not much else. I can't have that. So I made him a hardcover book on Shutterfly full of colour photos of the two of them together through the years. I talk to him about things they used to do together. Special things they shared. He will know that she loved him more than anything else in the whole wide world. I won't let him forget.

Tired boy after chocolaty dessert.

So, no great realizations, epiphanies or breakthroughs. Just clomp-clomp-clomping forward into the unknown, trying to pepper the greyness with moments of colour.

Just keep swimming, just keep swimming

2016-12-12T16:13:00.002-04:00

It's been five months today since Amanda died.

Grief continues to evolve. In the beginning, I had a mix of relief and bitterness with the sadness. I was very busy handling things. Then I transitioned into a period of expansive optimism. The past month or so, though, I've been feeling kind worn out, and new flavours of sadness have sprung up.

I've still been pretty busy. Some highlights on the up side?

Halloween with Batman Gordon.

Raffi at Centennial Hall.

Sharon & Bram at Aeolian Hall.

First snow meal of the season.

Dudes with fresh haircuts.

And on the work side, ratings results just came in for the radio station, and there are welcome signs of improvement. My bosses have put me on course to improve my management skills, which I'm grateful for -- I was sent away for a two-day class that was very educational. I've been busy as heck at work. I have enough vacation time left to take....well, until the end of the year off. With all that I've been through this year, I've taken nearly no time for myself. I'm so grateful for Gordon's sleepover nights with nana & grampa -- those nights have given me opportunities to feel like a well-rounded, vital human being in ways that being a dad and boss don't.

I've been hit and miss with my time with G. We've been spending too much time watching TV in the basement (at his urging, though I'm the grown-up), but I try to ensure we're doing special things as well.

Still, for all the good times G and I have been having, we're both feeling sad from time to time.

It hit me suddenly as we put up the Christmas tree. Putting up the tree was not the problem. It was when I opened the box of "good" decorations and pulled out the first one.

A set of ceramic mittens that Amanda glazed and put on the tree for our first Christmas together back in Halifax. I started crying. Gordon saw. That set off a week of one or both of us missing mommy. I think Gordon feels like he's starting to lose her memory. I think he's a little angry at her for not being around any more. He wants her to play with him. For a long time, he seemed pretty static about the whole thing, but it to me like seeing me cry over the decorations opened something up for him that he's not sure how to process.

It took more than a week to get back to it, but we finished decorating the tree. Lots more memories there, including decorations Amanda and G made together last year. Decorations commemorating his first Christmas. Others from the years gone by.

I'm carrying on a blend of traditions from our families -- Christmas PJs for him, a big present from Santa, cleaning up the living room before Santa comes, an advent calendar made of little tins on a magnetic board, a gingerbread house, and I will attempt to make the Land Of Nod Cinnamon Buns that made Christmas morning smell so good these past years.

So, is it the weather, having a cold, fatigue, routine, or something else that's caused my enthusiasm to dip? Or maybe I'm actually depressed and handling it well enough that it's not bad enough to interrupt daily functioning too much?

My therapist has put it to me very directly: I need to make some time for myself, or I'm going to burn out and get very sick. I've already had a nasty lung thing for more than a week. I don't want to get sicker than that.

I'm also still feeling a drive to do something creative to help Gordon and family remember his mom. I'm working on one thing that will be revealed at Christmas. I'm considering another project that will involve a trip to Halifax with Gordon, probably in the Spring. And, I'm still hoping some folks will send in their Amanda memories as I requested back in July. So far, I've had one submission.

Oh, what's the title of this post about? Well, Gordon has been enjoying the heck out of Finding Dory and Finding Nemo. They're lovely movies, though the tale of a nervous dad fish who has to raise his headstrong little boy fish after the death of his wife kind of punches me in the feels every time it's on. Dory's parents teach her to just keep swimming ... just keep swimming ... just keep swimming.

Sometimes I don't know where I'm headed or what's in the waters, but I just keep swimming. If that means we have KD and hot dogs for supper once again while I get my feet back under me, that's what we'll do. I want to serve G well and give him the life Amanda and I imagined for him, but I can't always do that every day. When I can't give Gordon an A+ day, I at least try to give him a B with extra credit for love. And just keep swimming.

Thanks, as always, to everyone who's been in my corner. I feel down but not out. Just kind of bleh and more cautious than a couple of months ago. Y'know what? That's okay. The key is not to make "bleh" my new normal.

So, TL;DR: Bleh for now, some boo-hoo, with an eye toward getting back to the recent yay and future woo-hoo.

The hole in my life is where my new life will grow

2016-10-12T16:02:00.001-03:00

I'm in between lives. The life I was living ended on July 12, four months ago.

Necessary parts of living have continued. I eat, I sleep, I get Gordon to and from daycare, I go to work, I pay bills, I tend to the house. I check on my little boy before going to bed and feel the pride of being a great dad. But very little is the same.

It's hard, but that doesn't mean it's bad. I have grief, I am grieving, but I am not my grief.

I spent so long being what I was doing that I'm going to have to relearn who I am and what I'm all about. I was Amanda's husband. I was Amanda's caregiver. I was Gordon's dad. Then I became a widower. But I'm realizing that those things are not all that I am -- I'm me, and sure, I do things, but those things aren't me. Okay, then, who am I? And what do I do now?

That's up to me.

Amanda's death blew a hole in my being. The aftermath made the hole bigger, more jagged and kind of infected.

I have some "good" grief moments, like when I'm tucking G into bed and start crying because I'd want his mommy to see what a wonderful little boy he is. And I have some "bad" grief moments, like yesterday, the morning after our wedding anniversary, when I began tearing up from bitterness and frustration on the way to work.

I'm doing what I can to accept the feelings as they come, but careful not to get stuck in any. I'm also working not to feel guilty when I have joy and optimism.

The hole in my heart, the hole in my life -- that's space for the life I will create for myself in the months and years to come.

The pain I've felt will drive me forward to make decisions for a fulfilling, loving, satisfying life to come.

Part of building the launching pad for my future self has been taking care of the physical space around me. In the weeks after Amanda died, I took steps to make our home less of a hospital and more of a living space.

Some of the many drugs I rounded up and disposed of.

I took a great big bag to the pharmacy. There was so much. It was probably worth a lot of money to the right people (or the wrong people). But I don't want it around.

Amanda's sisters came over and we went through closets and drawers and bags and boxes, sorting through clothes, purses and shoes. They took what they wanted. Most of the rest went to Goodwill.

I hope someone makes new memories with these clothes.

Before those bags went to the depot, I had an idea ... to get Gordon a couple of Amanda's favourite hoodies to wear when he needed a mommy hug. He loved the idea. Days later, I got a book called "Missing Mommy" that included a little boy whose mother had died ... and he spends most of the book walking around with a sweater he pulled from his mommy's closet.

How is the little dude doing, people ask. Mostly great, actually. Mostly great. He's very factual about losing mommy. He's able to explain that mommy had things growing inside her that weren't supposed to be there, and the doctors and nurses tried to stop them, and take them out, but they kept growing and growing until her body stopped working. And she died. And she's not coming back. And we miss her.

But he's mostly great. He's able to be an energetic little boy now without worrying about waking someone up, or leaning on a colostomy bag or incision, or rolling off a hospital bed. He has a daddy who'll play on the floor, or pretend the couch is a train, or stomp around the house like a dinosaur. In some ways, he's flourishing and thriving. He's mostly great.

That doesn't mean he has forgotten. I wouldn't let him. At bedtime, we often tell stories. Sometimes I'll ask him what he misses about her. One time, he said he missed doing puzzles.

"That's right!" I said. "Mommy would sit in the blue chaise and you'd sit there too, and mommy would build puzzles with you. And what did she teach you?"

"To find the corners and edges first," he said.

"Good! So, whenever you do puzzles from now on, and you get the edges and corners first, you can remember that mommy taught you that. And every time you do, that's a little bit of mommy that's still with you, forever."

"And when there's a missing piece," he added, "that's mommy doing a puzzle .... in my heart."

--

Amanda's birthday would have been last week. After her dad died, she made a traditional family banana cake each year on his birthday. She made the same cake for Gordon's first birthday. And his second.

This year, Gordon and I made the same cake. For mommy. I'd never baked from scratch before, but at every step of the process, I remembered little pieces of advice Amanda had passed along each time I watched her make this cake. Don't use butter that's too cold. Use vinegar to make milk sour. Use exactly the right amount of flour.

It was delicious.

Nana Hewitt's Banana Cake - a new tradition for the Simpson boys.

This in-between life is awkward and kind of scary. That's okay. I'm not afraid of being afraid. My grief will serve me well. I have the rest of my life to live, and it's up to me to make that happen. I'm going to stumble and fall, make bad choices, make great choices, be disappointed, be surprised, be inspired, be an awful mess, and sometimes be the greatest I've ever been.

This hole in my life is the place where I plant the seeds for my future self. There's no reason why I can't have a life of love, excitement, fulfillment, and prosperity. It may not happen soon. It may not happen easily. Or maybe it will. But grief will not hold me forever. It will catapult me toward whatever's next.

Two months later, bathtime still haunts me

2016-09-12T14:36:00.001-03:00

She'd fallen a few times before the last day.

Once, in the driveway, while I was giving Gordon a bath. She cut her eyebrow on the asphalt and exploded her colostomy bag, and waited a while before phoning to say she needed help. Gordon ended up banging on the living room window from the inside, naked, wet, wanting me to come back inside. We ended up calling her folks over to help hoist her up -- I couldn't do it by myself. She was too big and couldn't move well any more.

She fell again, not long before the last day, in the bathroom, at home by herself. She said she'd fallen asleep standing up and woke up on the way down, like a cat tumbling off the edge of a highrise balcony during a nap. It took her more than half an hour to scoot to the kitchen, looking for her ringing cell phone so she could call for help.

That day convinced me it was time to take time away from work and keep an eye on her. Gordon would go into daycare full-time. Amanda was sleeping more and more, and becoming harder to wake. And when we did wake her up, she seemed to be stuck in a dream. She'd nearly stopped eating. Even she could tell the end was coming.

On the last day, I had a nap while Amanda visited with old university buddy Amberley. They sat out back and talked most of the day. I woke up in time for a scheduled visit by Amanda's lead doctor from the palliative care team, and her favourite palliative care nurse.

We had a great meeting. The doctor said we'd know when death was near. Amanda wanted a hospital bed set up in front of the big living room window, so she could see outside in her final weeks. We talked about the necessity of memory-making, tying up loose ends, having courageous conversations about end-of-life plans, and crafting the Expected Death In The Home (EDITH) plan, including the do-not-resuscitate (DNR) order.

We talked about telling Gordon that mommy was going to die. Amanda wanted to do so that night. Her nurse quietly organized the many bags of wound dressing, gauze, colostomy supplies and assorted medical gear into a couple of large boxes. It was a good meeting that left us knowing, again, that the end was coming, but in a few weeks at least.

I made hot dogs for supper, and Amanda was only able to eat half of one. Even that was a big effort.

Bath time rolled around, and Amanda got up and began puttering around, moving between rooms, putting a roll of medical tape here, moving something else there.

As I bathed Gordon, I looked up the American Cancer Society's booklet, "Helping ChildrenWhen a Family Member Has Cancer:Dealing With a Parent’s Terminal Illness" and printed it out from my phone to the wireless printer. We had a difficult discussion ahead.

Amanda walked by the bathroom door from the bedroom, saying she'd just lost her balance in there. I told her, with serious eye contact, "slow down, and be careful." I should've told her to go lie down.

I was rinsing the shampoo out of Gordon's hair when we heard a big crash in the kitchen, then a loud groan.

I rushed there and found Amanda, face down on the floor. There was blood on the floor, and a puddle of hot dog vomit. Her sunglasses had slid into a corner of the tile. Amanda looked panicked.

"This is it! This is it!" she said. She pushed herself up a bit and spat a broken tooth into her hand.

I grabbed her under her arms and tried to haul her into a seated position against the microwave stand. I thought it was just another fall -- a bad one. I urged her to "Sit up! You have to sit up!"

"Don't yell at me!" she answered, afraid.

Amanda said she couldn't breathe and needed her puffer from the bedside table. We'd both forgotten that I picked a full one up from the pharmacy an hour and a half earlier. I ran to the bedroom and back and handed her the puffer.

"I have to get Gordon out of the tub. I will be right back."

I knew I couldn't leave our little boy in the bath. That's rule number one of parenting, right? Don't leave a child alone in the water, ever.

He didn't want to get out. So I pulled the plug, hoisted him out, crying, and quickly toweled him off. I ushered him to his bed and told him to stay there and not move.

I rushed back to Amanda and she was motionless, glassy eyes open, bloody puffer on the floor beside her hand.

I tried to get a response. Spoke. Spoke loudly. Grabbed her face. Shook her hand. Looked for a pulse. Nothing.

Do I call 911? We'd talked a week earlier about how she didn't want paramedics and police and firefighters stomping through the house and scaring Gordon, and how just a few minutes without oxygen would cause brain damage she didn't want to be brought back with. But we never got that DNR signed, and didn't have the EDITH completed. I didn't have much choice. I phoned.

I calmly told the dispatcher I needed paramedics. Female, 37, with ovarian cancer, VSA (vital signs absent) on my kitchen floor. The dispatcher asked if she was breathing, but I didn't know. She had me lay Amanda back and listen for breathing, but I only heard a slight gurgle. She asked me to try chest compressions. I did. The dispatcher said we were going to count to 200 pumps. I lost track at 40, as my head began spinning.

The paramedics arrived at the door and went to work on her as I stood back. They asked if she'd been sick. Yes, I said. Very sick. Ovarian cancer. Should they continue, one asked? I asked whether she was gone.

"Yeah," he said, as if to say, 'you dummy.' "She's DEAD."

Okay, then stop. Thank you for coming so quickly.

They cleared out. The firefighters left. The police stayed.

I called Amanda's mom and had to tell her that Amanda had just died.

Gordon was still on his bed, crying. Not crying because mommy just died. Crying because he was naked and being told to stay on his bed. I managed to go through this without getting into the line-of-sight between his bed and the kitchen.

The police, obviously, had questions. What happened? Was she on drugs? (Yes, lots of drugs, many kinds.) Where are the drugs? (Here, here, here, here, and here.) Barb and Wendall arrived and attended to Gordon while I spoke to the police briefly.

Then I had to go in to Gordon's room and tell him the news. Mommy died. She's been sick for a long time. Her body stopped working. She's not coming back.

I grabbed the printout from minutes before and passed it to Wendall so we could all be, literally, on the same page with how we explained it to Gordon. This would be a life-changing night, and I didn't want him getting conflicting information from the people he trusts.

Ruth and Amy showed up, too. Everyone gathered around Gordon and helped get him dressed for bed.

I went to Constable Jenn's cruiser to give my statement. She asked a lot of questions, which I answered calmly. A Sergeant asked which funeral home to call. This was all happening so quickly.

We put Gordon to bed, and he asked if the officer standing guard in the hallway would come to say goodnight. Gordon went to sleep, not knowing his mother's body was sprawled out on the kitchen floor.

Gerry from Woodland Crematorium showed up, already damp from the hot, humid night. While the family gathered to talk in the darkness on the back deck, Gerry and an officer took Amanda's body away and cleaned up the mess.

As I showed Gerry out the front door, I saw a piece of paper sitting on the stool. It was the DNR order. Completely filled out .... except for her signature.

It immediately became clear how much we didn't know what was next. Amanda and I had only a brief conversation about her wishes for a service. We were all shocked. This wasn't supposed to happen this way. Not so soon, not so suddenly, not with such a crash.

Everyone went home and I was alone. I had to call a few people -- Amanda's friends, some family, and Amberley, who'd left our house maybe an hour and a half before she died. And eventually I'd have to go to sleep.

This all happened two months ago today.

Bath time still spooks me.

Every time I put Gordon in the water and sit down on the floor next to the tub, I remember that night. I remember Amanda walking past the door that one last time. I remember the crash. I remember it all.

Gordon is just having a bath, but I relive that night a little bit every time.

No one knows how much time is ever left

2016-08-20T22:11:00.001-03:00

Right now, Gord Downie is leading The Tragically Hip through the band's final concert. I'm watching it live on TV, despite never having be been a Hip fan. I certainly could have been. They're very good, but I never gave them a chance.

"He's never going to make that tour," said Amanda when she found out, along with the rest of Canada, that Downie had brain cancer.

She wasn't talking out of her ass with the comment. Her dad, Gary, died of the same kind of tumour. A GBM, glioblastoma multiforme. Amanda was as close to her dad's care as I was to hers. So, I know she learned a lot about GBMs. How they grew, how they were treated, and how fast they killed.

"He's not going to survive that long," she figured, but she gave Gord a ton of credit for planning one last tour given what he was facing.

Amanda died. Gord went on tour. He's performing like a pro. Sure, he has teleprompters all over the stage showing him the lyrics, but Elton John did, too, 20 years ago, and Sir Elton didn't have a tumor reaching its malignant tentacles throughout his brain.

She died and he's doing a great show.

She thought she'd outlive him. No question in her mind. And given the info we had at the time, I would've agreed with her.

She would have watched this show with me. She would be watching the Olympics, too.

I've been doing pretty well most of the time lately, but I miss her tonight.

Never assume you know how your life or someone else's will play out. Even when you know what you know, and know what you don't know, it's the stuff you don't know that you don't know that will catch you by surprise.

Bravado

2016-08-10T12:07:00.000-03:00

If we burn our wings
Flying too close to the sun
If the moment of glory
Is over before it’s begun
If the dream is won —
Though everything is lost
We will pay the price,
But we will not count the cost

When the dust has cleared
And victory denied
A summit too lofty
River a little too wide
If we keep our pride —
Though paradise is lost
We will pay the price,
But we will not count the cost

And if the music stops
There’s only the sound of the rain
All the hope and glory
All the sacrifice in vain
If love remains
Though everything is lost
We will pay the price,
But we will not count the cost

- Rush, "Bravado"

I've held off posting this song for a long time. It was on my mind so many times over the past few years.

Amanda's Bio Video: Call for submisisons

2016-07-26T11:58:00.000-03:00

Just hours before Amanda died, we met with her palliative care doctor and her regular nurse and talked about the weeks to come. The doctor urged Amanda to get busy on memory-making, and leaving things behind for Gordon.

We didn't even get to begin. I had dozens of questions printed out, the camera charged, the microphone at hand, ready to put together an extensive video biography that would show Gordon what his mother looked and sounded like, so he'd never feel like he was losing the memory.

In the absence of her memories, let's use yours and ours. Let's make that video.

I've seen comments on Facebook in the past two weeks from people who've said wonderful things about Amanda. YOU are who I'm talking about here. Hey, even if you didn't like her, you probably have a story. The more material I have to work with, the better this will be.

TOPIC SUGGESTIONS:

How did you know Amanda?
What did you first think of her?
Major stories or memories that changed you?
Her character traits and anecdotes that illustrate them
If you knew her at the relevant time .... what did she say about Gordon? About Scott? About her family?
What do you want her survivors to know that they may one day forget?

TECHNICAL DETAILS:

Video format: 1080p preferred, 30 fps. Any video container will do, but .mp4 or .mov will probably be most common. And shoot in landscape orientation, not portrait -- that's horizontal, like a TV set, not vertical like a movie poster.
Audio: Avoid wind noise and get as close as the shot allows, so we can hear what you're saying most clearly. Most people don't have external microphones, but if you do, bless you,
Lighting: Outside on a cloudy day usually looks great, or position yourself facing a bright window. Bright sunlight can be hard to work with. Plain indoor lighting -- lamps and such -- usually look bad on video.
Framing: Keep it steady! I got an adequate iPhone tripod at the dollar store. Use stacked books and some tape if you need to lock a phone down. Don't use the digital zoom -- if you need to get closer, move you or move the camera.
More framing: Close but not too close. A medium shot. From about belly button up, with your eyes about 1/3 to 1/2 way down the frame. You can talk right to the camera. Having the camera at eye level looks the most natural, so you're not looking up or down at the camera.
If you're already an experienced shooter and have access to great gear, go for it! Or if you know someone who's great at video and sound, have them help you out.
And don't forget .... introduce yourself! I'm lousy with names and remembering who's related to who and how.

LOCATION/B-ROLL:

Here's an idea: if your story/memory takes place in a PLACE, take us there! If you can be at the location, that's pretty cool.
Extra video from the location can help in editing, for cut-aways or establishing shots. Talking about softball? Take us to the field. University library? Seedy bar? Your backyard?
Do you have any video of Amanda? Oh, that would be awesome. I don't have nearly enough.

WHERE TO SHARE:

If you have a server or cloud site where you can post the raw video, contact me with the link and I'll download it. Pulling it off YouTube or Facebook is often a headache and can yield lesser quality than getting the original.
Dropbox: The following link will let you upload files as big as 2 GB each to me. https://goo.gl/o2AVUI

DEADLINE:

~~By the end of this week.~~ ~~Tomorrow.~~ Geez, I dunno. Try to get it in by the end of summer? Part of Amanda Simpson's legacy is her procrastination. It's part of what made her who she was, but not a part that I can say made things better for her or the rest of us. So, celebrate Amanda's memory by doing this exactly the way she wouldn't have: promptly!

Thank you! I look forward to learning more about Amanda through the process ... and being able to share her story with Gordon for years to come.

Amanda's Celebration of Life: Recap

2016-07-25T15:36:00.001-03:00

Thank you to everyone who came out to Amanda's memorial service on Sunday. We set out 50 chairs but quickly needed more. It was muggy and emotions were high, but it was an altogether special day that Amanda would have been proud of. Proud, mortified, proud, sad, embarrassed, proud, giggly, proud, impressed and proud some more. I'm glad we were also able to put it live on Facebook for the benefit of folks from away.

Here's the formal part of the ceremony, now on YouTube:

And for the completists, even more detail:

The program (PDF format).

The music playlist (if I get bored, I'll make it into a YouTube playlist and update the link here):

Happy, Pharrell Williams
All Along (For Sophia), Ian Fletcher Thornley
Roar, Katy Perry
Secrets, Ian Fletcher Thornley
Blackbird, Sarah McLachlan
Kickstart My Heart, Motley Crue
Seasons Of Love, Rent
The Power Of Love, Huey Lewis and The News
Angel, Sarah McLachlan
All Apologies, Nirvana
Times Like These, Foo Fighters
Landslide, Dixie Chicks
Home for a Rest, Spirit of the West
Rosie, Tom Waits
Killer Queen, Queen
I Hope That I Don’t Fall In Love With You, Tom Waits
Hallelujah, Allison Crowe
Princes Familiar, Alanis Morissette
The Garden, Rush
Rosy and Grey, The Lowest of the Low
You Are My Sunshine (Pt. 2), Elizabeth Mitchell
Pompeii, Bastille

And, finally, The Slideshow.

This is not likely to be the last I say about all this. I mean, I've had this blog up for the past 11 years -- am I going to stop talking about my life now? Of course not. There's lots more to say.

For now, I say ... to Amanda ... and to every one of you ... THANK YOU.

Announcing the date for Amanda's memorial service

2016-07-18T22:37:00.000-03:00

This Sunday, July 24, 2016, at the Civic Gardens complex in London, Ontario, we'll all get to say goodbye to Amanda. If you can't make be here in person, I will attempt to set up an Internet feed so those from away can join in.

Her obituary, which ran this past weekend in London and Halifax, and will run in Kirkland Lake as well:

Amanda Simpson (nee Yateman) died at home in London, Ontario on July 12, 2016 at the age of 37, after a long battle with ovarian cancer.
Amanda is survived by husband Scott and their son Gordon. Daughter of Barbara Derbyshire, step daughter of Wendall Clifford, sister to Amy and Ruth. She is preceded in death by father Gary Yateman.
Amanda was born on October 3, 1978 in Kirkland Lake, Ontario. She graduated from University of Toronto in 2001 with a Bachelor of Science, then from McMaster University in 2003 with a Bachelor of Social Work. She moved to Halifax, Nova Scotia where she worked for the provincial government as a child protection social worker. Amanda married Scott Simpson in 2009 and gave birth to Gordon William Simpson in 2013. The family moved to London in 2014 to be near loved ones as Amanda fought cancer.
Amanda requested cremation, which is being handled by Woodland Cemetery & Crematorium in London. Details on a celebration of her life will be announced soon. Donations to Ovarian Cancer Canada at http://www.ovariancanada.org/ would be appreciated.

For the dozens and dozens of people who've reached out online and in person to extend their condolences -- thank you. For those who wonder if there's something you can do to help -- there is, and I'll share it here and on Facebook soon. Amanda's sudden (though expected) exit from our lives left some unfinished projects, and I have an idea for something that will help Gordon and I through the years. I think you can be part of it.

Amanda has died. Her body is gone, but her legacy remains

2016-07-13T14:46:00.002-03:00

I'm sad to report the death of Amanda Simpson. She was 37.

We thought she had more time -- not much more, but more.

Amanda died at home Tuesday evening, just hours after a good meeting with her doctor and nurse to plan out the weeks to come.

She spent much of the day with an old friend. She has been visited by many friends and relatives in the past few weeks.

Thanks to their work, Amanda came close to one of her life's goals: seeing her garden finished. She had two grand legacy projects. Her garden, and her Gordon. I will take good care of both, as per her wishes.

Amanda's body is now with Woodland Cemetery with cremation scheduled for tomorrow. Details on a service have yet to be determined. I will update here and at thesimpsonblog.com.

Our heartfelt thanks to everyone who has been so supportive over the past 3+ years, from the day Gordon was born and the ovarian cancer was first discovered, through long months of treatment, relapses, setbacks and reprieves.

Difficult times are still ahead. I feel the warmth of so many people, and I am grateful to be near so much love from family in London and Stratford. I know people around the country and beyond have been following our story. The story's not over. This chapter is.

Amanda's legacy lives on in Gordon, in the garden, in me, in her family, and more that will unfold in the future.

(I apologize to anyone who feels blindsided by this news -- we've tried to contact as much family as possible before sharing on Facebook. Real human contact is always better than digital, but this medium carries the message in today's world.)

The doctors are out of ideas, so we work toward the end

2016-07-01T15:34:00.001-03:00

We're planning for the end and beyond now.

With Amanda swollen up and seeming generally unwell, and new tumours having appeared in her spine and liver in addition to her skull, ribs and pelvis, she returned to the doctors for an update. The medical oncologist who's been leading the chemical fight against her ovarian cancer since we arrived in London two years ago was there, along with her newest doctor from the palliative care team.

There's really nothing safe and effective they can do to stop the advance of the cancer.

It has smartened up to the hormone blockers that she'd been on for a year and a half.

It wouldn't respond to chemotherapy -- they tried at the beginning, only to find out later that it was low-grade cancer, which moves slowly and is largely unaffected by chemo. Now it's going fast and has already been survived chemo before. Besides, with only one kidney, a broken one, the chemo would ruin her.

Surgery isn't an option.

Radiation is there to address the pain, not wipe out the tumours.

Clinical trials would require her to be in better health right now. Her health is not good. Her kidney function has slipped below what it was before the neophrostomy tube was inserted. It's being squeezed, invaded, stressed or otherwise put in danger.

They offered one more thing Amanda could try: a low-dose oral chemotherapy pill. But they didn't make any suggestion that it would do much.

So, that's it. The fight is over. Cancer won. Now it's just a matter of time before it claims her body and her life.

How much time?

"Not weeks, but months .... but a small number of months," is the answer I remember Dr. Welch giving us. In explaining why he could only give an imprecise estimate, the doc explained that when they get into 3-6 month territory, there are too many variables to make any accurate predictions. Minutes later, Amanda demanded to leave the room. Her mom and Wendall took her back to our house. I followed a few minutes later. That was a draining day.

A follow-up talk with the other doctor put the prognosis at closer to two months.

Given all that's happened in the past few months, I think this was not a huge surprise, but still devastating to hear officially.

Now what? Really, now what? What do we do? What do we have to do and what are we supposed to do?

A few of the supplies Amanda uses to maintain her colostomy.

I'm so pragmatic that I start thinking about the obvious must-do things: get those taxes done, get a will, transfer ownerships, make funeral arrangements. I want her to have life experiences that she's always wanted, where possible. I want to make a biographical video to have record of her life story to reflect on in the years to come and to share with Gordon so he can better know his mom.

And even with all those wants, we still have to go to sleep and get up, and take Gordon to daycare, and eat, and clean, and work on the deck, and get the winter tires off the car, and all the routine things that comprise regular life.

So, with months left, maybe less, and the prospect of her getting sicker and sicker, what do we do?

I'm here for Amanda, as always. Family is devastated but also wanting to help.

Nurses are visiting daily to maintain her wounds and bandages. The palliative care team is on board to help keep her comfortable. Other health pros have arranged delivery of a walker.

I've encouraged Amanda to come up with some 'bucket list' things to do ASAP. She's always wanted to drive a convertible, and Mandi at work is lending us hers this weekend. (Thank you!)

Mary came down last weekend to get all the taxes caught up. (Thank you!)

We're in touch with an estate law expert to tackle the wills and further planning. (Thank you!)

But the rest is day by day.

We still have to talk to Gordon about all this.

More updates to come.

Things get much worse as tumours spread fast

2016-06-19T23:17:00.003-03:00

Things crawl in the darkness
That imagination spins
Needles at your nerve ends
Crawl like spiders on your skin

Pounding in your temples
And a surge of adrenaline
Every muscle tense —
To fence
The enemy within

- Rush, "The Enemy Within"

We don't know how or why, if there is a how or a why, but Amanda's cancer has woken up and is on the move, double-time. Things have become much worse in the time since the last update.

At that point, the docs had found a couple of spots on her ribs that were causing her pain. They zapped it with radiation to give her some relief.

Since then, things have progressed quickly.

Just after the hospital stay when they were trying to get Amanda's pain under control, docs found more bone metastases in her sacrum (large, triangular bone at the base of the spine) and iliac crest (the big wing-like bone on the pelvis where they harvest bone marrow). More radiation. This time, the radiation hasn't knocked the pain down.
Then she had headaches. They looked and found a tumour in her skull. You can now feel it from the outside -- it feels like she was hit by a baseball. She'll be going in every day this week for a series of radiation treatments. The tumour is about 2cm inside her skull, not pressing on the brain but touching the dura.

They looked more and found tumours in her spine.

They looked more and found a tumour ... in her liver.

She also began to swell up like a water balloon. Her ankles were bigger than when she was at the peak of pregnancy. Her blood numbers showed something was very wrong. She was vomiting for no apparent reason, unable to exert herself without throwing up.

Her kidney was failing. Not kidneys, just one kidney -- the other was decommissioned some time ago and was taken out a few months ago during the debulking surgery. Without a working kidney, that was it, game over.

The going theory was that more cancer (or maybe scar tissue) in her abdomen was strangling her ureter and causing urine to back up and poison the kidney. Last weekend they installed a nephrostomy tube. That pokes through her back, right into the kidney structure and drains to an external bag. Now she has two bags on her at all times.

Still, the swelling hasn't gone down. If anything, it's worse. The skin on her ankles is so stretched that it's breaking down, causing blisters that are weeping into puddles and threatening to become infected at any time. Nurses now come once a day to change dressings. At last word, the kidney warning numbers had fallen just a few points and were still not good.

Amanda is barely able to get around. With the swelling and restricted movement, she's virtually run out of places she can sit. She's fallen outside more than once.

As you can probably imagine, she's miserable.

We're all scared, exhausted, and sad. Not just her and me, but the extended family, too. Gordon is mostly spared -- with the help of family, he didn't even know Amanda was in hospital last weekend. But he can't help but see what's going on.

The doctors are trying to keep Amanda as comfortable as possible, but even with a Fentanyl patch and a steady stream of oral painkillers, she's in agony whenever she tries to move. She's prone to nodding off into a deep sleep and is hard to wake up. I keep finding her in bed in the middle of the night with her computer on her lap, just conked right out. Alarms are nearly pointless -- she doesn't hear them.

Gordon pitches in with the garden project.

Usually I'm able to temper the bad news with some good news. There's no good news this time. There's occasional distraction from the bad news. Three of Amanda's closest friends from Halifax came to visit on the weekend and brought laughs, food, adult beverages and donairs. They also helped bring part of Amanda's vision for her garden to life through their hard work. Amanda wanted this to be the summer she finished her garden -- but she can't even take the hose around the yard and spray the plants without being driven to vomiting.

At every stage of this journey, people have asked, is there anything we can do to help? I'm always reluctant to ask for anything, but at this time, I'm wondering if anyone nearby in our circles has expertise in the following:

Tax preparation -- she's several years behind in filing, and I want to get her get caught up
Estate law -- she doesn't have a will
Paralegal -- a certain contractor's negligent construction means Amanda can't get in and out the front door any more. I've been meaning to sue for a while, and feel pretty motivated to do so right now. Small Claims Court is relatively uncomplicated, but I don't want a little error to screw it up

(EDIT: We're now following up leads on tax prep & estate lawyer. Thank you for the quick response!)

I'm sorry it's taken so long to get this update out. There's historically been an inverse relationship between how much is going on in your life and how much you update your online accounts (Barger's Law), and things have been coming on so fast and so hard lately.

All the best to you, wherever you are.

Amanda's cancer spreads, radiation and palliative care begins

2016-05-08T11:22:00.000-03:00

EVERYDAY PEOPLE
EVERYDAY SHAME
EVERYDAY PROMISE
SHOT DOWN IN FLAMES

EVERYDAY SUNRISE
ANOTHER EVERYDAY STORY
RISE FROM THE ASHES —
A BLAZE OF EVERYDAY GLORY

If the future’s looking dark
We’re the ones who have to shine
If there’s no one in control
We’re the ones who draw the line
Though we live in trying times —
We’re the ones who have to try
Though we know that time has wings —
We’re the ones who have to fly

-- Rush, "Everyday Glory"

It's World Ovarian Cancer Day, 2016.

Let's cut right to it.

Amanda's cancer has spread to her bones. She's begun radiation treatment and the palliative care team is trying to control her pain.

Now, that sounds pretty scary. And it is.

Just a few weeks after being released from hospital to go home and heal, Amanda started getting bad pain in her shoulder. That soon moved to her ribs.

She went to see Dr. Sugimoto for a follow-up visit intended to assess her wound healing and how her colostomy was performing, but when she told him about her rib pain, he sent her to the emergency room immediately to rule out a pulmonary embolism.

After hours of testing and waiting, Dr. Sugimoto and the ER doc came in. It wasn't an embolism. It was late in the evening, and Dr. S had already been home, so we knew it wasn't good news.

He said the CT scans that day had picked up lytic lesions on her ribs. This required more investigation, considering her existing cancer history.

A bone scan followed.

Before the results came in, Amanda's pain worsened to the point she had to go to the ER again.

In walks a radiation oncologist with the news: the bone scan confirms Amanda's ovarian cancer has metastasized to her ribs in two places, and one of the tumors was swelling the bone from the inside out.

This ... is ... unusual. Ovarian cancer rarely spreads to the bones. And when it does, it usually involves the kidneys and/or liver, too.

Amanda was readmitted to hospital immediately to handle the "pain crisis" and begin radiation treatment. Not to nuke the cancer, they said, but to help relieve the pain.

After one dose of radiation, a bunch of steroids, and intervention by the palliative care team, it's been nearly a week and the pain is not yet handled. They've tried rising doses of opioids and now a Fentanyl patch, and although she's gotten pretty stoney, she's still in agony when she moves even a little.

This ... is ... I don't even know any more.

I mean, how many times have I written here about new lows? How many disappointments? How many times has the unlikely become reality? How many hopeful turnarounds have been piledriven into the mud by an unforeseen and terrifying new development?

The docs all say Amanda's lifespan is not expected to be impacted by the new tumors in her ribs. But at this point, she can't do a darned thing. She can't take a full breath because it hurts so much, so her lungs are partly full of fluid and somewhat collapsed. She can't move around the house because of the pain. She sure as hell can't garden and play and enjoy life right now.

This ... is ... infuriating.

I don't curse and swear on this blog because of publishing policy reasons, but ... oh, I want to. I want to cry and scream and yell. At who or what, I don't know. I know life isn't fair. I've known that for a long time. But even in an unfair universe, I don't expect THIS level of unfairness.

Can't we catch a break, for at least a little bit?

It's upsetting to Gordon, too, as he was assured that mommy was "all better" now and would be home. When she went to the hospital for appointments, he got upset that she wouldn't be coming back. We promised him she would. Now she's back in hospital, and we're taking her Mother's Day card to her at her bedside.

People today get frustrated in the coffee line and blurt out "I can't even..." and here I am, in the basement in front of a computer, with a happy little boy watching cartoons in the other room ... and with tears in my eyes, I also think "I can't even..." But I can't even figure out what I can't even. I don't know what's next. I don't even know what's now. We're just going through each minute hoping the next will be better.

This ... is ... so hard.

And I'm not even the one in hospital. If you know Amanda, please drop her a note. She has her phone and is reachable by Facebook, email and the usual channels.

She's home

2016-04-13T19:03:00.001-03:00

Gordon was home sick today and spent most of two hours crying and pleading for mommy to come home.

Then she did. And he immediately fell asleep in her arms.

This is the moment she's waited nearly three months for.

She has a lot of healing left to do, but this is a big day.

Homeward bound, we hope!

2016-04-12T11:28:00.002-03:00

Sorry for the big gap between updates, but I think there's good news to report. If all goes well, Amanda could be coming home .... tomorrow!

It's been nearly three weeks, I think, since Amanda's second colostomy surgery. They did a transverse loop colostomy on the other side of her abdomen. She came out of it with a whole bunch of retention sutures bringing the wound together. It's a mess in there, that's for sure, but this one looks like a keeper.

Crossing a footbridge over fast-flowing water can be intimidating but exhilarating. "I want mama home."

The first few days after surgery were rough. Amanda was pretty well out of it, either in a lot of pain or so drugged up that she couldn't stay awake. There's that fine line between "relief of pain" and "you've stopped breathing."

Once she got through that, there was more pain -- the site of the stoma (new hole where the intestine is revealed) is right about where she had the chemo burn a couple of years ago. (They tried a chemotherapy technique where the chemicals are injected through a port into the abdominal cavity so it can get right at the cancer cells, but the needle came up short and shot the juice into her fatty tissue. An internal chemical burn. Yowwwww. Now it's re-triggered.)

She's also had some infection issues. She has a tunneling wound or sinus tract. It's an infection that's creating a cave inside her tissue, and those are tough to treat. It was really yucky and is still not solved.

The docs and nurses say her major surgical wounds are healing nicely, but that's all relative. At first glance, she still looks all sliced up with open wounds going here and there. Kind of a Frankenstein's belly of gaps and closures and flesh going here and there. But it's getting better.

She was on TPN (total nutrition by IV) for a good long time, but is back to eating and drinking like a human again. That, plus the fact that the new colostomy is rerouting the poop flow OUT of her body instead of into her gut, is probably making for better healing.

Things aren't perfect or ideal yet. The sticky flange that the colostomy bag sticks to has been prone to leaking -- it's not supposed to. Her wounds are still open and need frequent re-packing.

But she's determined to GET HOME and the doctors are behind her GOING HOME. Gordon wants her home. I want her home. It ain't gonna be easy, but it's time! Could happen as soon as tomorrow.

So, what have we been up to over the past few weeks?

Amanda has been filling the doors of her hospital room with pages she's finished from her adult coloring books:

About half of the mandalas Amanda has been coloring.

Gordon celebrated his third birthday with mommy and I in the quiet room on the gyne surgery floor, down the hall from Amanda's hospital room. Cupcakes and presents, then I took G to Adventures On Wonderland for an afternoon of play! (Thanks to everyone for all of Gordon's amazing birthday presents, by the way!)

Mommy put on a brave face to show Gordon a fun time as he turned 3.

And, with the help of my always-supportive and uber-helpful in-laws, I've been able to get out a couple of times. I got photo credentials to shoot Walk Off The Earth and Marianas Trench at Budweiser Gardens (Flickr Album):

Walk Off The Earth performs in London. Photo credit: Holy crap, I took this.

And went with a work buddy to a wrestling show last weekend and snapped a few hundred pics (Smash Wrestling Flickr album):

Always happy to be ringside once again. Tyler Tirva dropkicks Cody Deaner, brother.

After nearly three months of holding down the homestead while Amanda's been in hospital, visiting nearly every day, and keeping things rolling at work I confess -- I'm pretty worn out. I think we all are. It's been a real grind for so many people who've been working behind the scenes to keep life going. But it looks like things are taking a turn for the better.

I hope to have another update soon once Amanda's home and getting used to our house once again. I think she's going to appreciate the place a little bit more, after having spent almost a quarter of the year in bed in a small room!

The way out
Is the way in
The way out
Is the way in…

Out of touch
With the weather and the wind direction
With the sunrise
And the phases of the moon
Out of touch
With life in the land of the loving
With the living night
And the darkness at high noon

You can never break the chain
There is never love without pain
A gentle hand, a secret touch on the heart

Out of sync
With the rhythm of my own reactions
With the things that last
And the things that come apart
Out of sync
With love in the land of the living
A gentle hand, a secret touch on the heart

A healing hand, a secret touch on the heart

There is never love without pain
Life is a power that remains

- Rush, "Secret Touch"

The sweet smell of success (the opposite of that)

2016-03-06T21:56:00.001-04:00

Let me lock in the system at warp 2

Push it into systematic overdrive -

U know what 2 do

- Ween, "Poop Ship Destroyer"

Pardon the juvenile humour off the top, but this journey has been so unreal that I can't help but fall back on laughing in the absence of appropriate things to say.

Amanda's headed for another big surgery this week.

Quick recap of how we got here: She went into hospital in late January to have her ovarian cancer tumours taken out. That surgery ended up taking a foot-long chunk of her colon, so they spliced what was left to her nature-given outlet. Well, that blew apart and she went for emergency colostomy surgery. THAT didn't work, either, as illustrated by our guiding light with the scalpel hand and the silver tongue, Dr. Sugimoto:

I see a tampon and a freaky condom, but this is a medically accurate drawing.

The business end of the remaining colon sloughed its way back into her insides and strictured itself off, creating a cul-de-sac with no escape for poop nor gas. They put her on TPN (full nutrition by IV) but let her drink, trying to buy time until the gnarly mess of adhesions and young scar tissue inside settled down enough that they could go back inside and ... re-colostomitize. Yes, she's been in hospital the whole time. One week was the expected stay. Going on six weeks or more, now. I've lost count.

So, I'm sure you're thinking -- hey, food or not, you're still making poop every day. Where was it all going?

Mommy and Gordon take a walk.

Great question. None of the answers I could provide would be anything less than disgusting and/or unbelievable. By the surgeon's account, the human body has ways of rerouting things that would make the designers of the Internet jealous.

Meantime, the docs had Amanda on a vacuum-suction wound appliance. They packed her huge, gaping, sternum-to-pubis incision with what looks the grey acoustic foam on my studio walls, taped it all up airtight and applied 24/7 suction to it. It slurped out the healing juices from the wound. Very high-tech, and I'd never heard of it until I saw it.

All good, until it started to stink. Like, open sewer kind of stink. Not a great volume of stink, but enough to make Amanda queasy and embarrassed. Heck, she was nauseated and fatigued most of the past week, made worse by odors she couldn't tell were real or ghosts.

We found out this weekend that a) they were very real and b) holy poop, it was poop. Coming out of the wound. W....T.....F?

Yes, it looks like her colon has popped another hole. Not only that, her abdominal wall must be compromised too, in order for the poop liquid to be sucked through the wound, the sponge, the vacuum, and into the tank.

Hence, the order to get in there and fix things ASAP.

Other than the complete lack of eating, recurrent nausea, disturbing stinks, a gaping wound that looks like linear steak cooked from raw to well done, and assorted symptoms that aren't my place to be talking about without her say-so, things have been appeared to be half-decent for the past couple of weeks.

Amanda's been having some excellent visits with Gordon, including having him accompany her on walks through the hospital hallways. He loves to push the IV pole and "help" push the wheelchair when she needs it. He gets a huge kick out of riding the fancy bed up and down like a helicopter.

She even came home for a few hours each day this past weekend, still attached to the vacuum unit.

Seriously, this latest turn has me pretty disturbed. From what I understand about feces, it's not supposed to be outside the expected tubes. It's certainly not supposed to be on open wounds. Definitely not spread across open two-foot-long wounds and sucked through, 24/7. None of this seems like remotely OK news, frankly. The fact that Dr. Sugimoto is not pacing around and freaking out is what's got me grounded at this point -- if he's not panicking, I'm going to believe that he can fix this and get her back in order.

Until the surgery happens, and it could happen as soon as Monday (tomorrow as I write this), the vacuum gadget is out of the picture and it's back to plain old pack-it-with-gauze, sorry-for-the-agony.

Still ahead: the surgery. What colon will she have left? Where will they choose to route it to come out of her body? What are the health consequences of having had all this poop in unwelcome places? How long will it take to recover THIS time? When will Amanda be home?

Oh, and we haven't yet had a conversation with the medical oncologist about what the lab analysis of her tumours revealed. First things first -- THEN we can get back to the stuff that we were SUPPOSED to be worrying about. (That wasn't meant to sound sarcastic.) (Neither was that.) (Seriously, that was sincere. The oncologist is a good dude.)

We're feeling DONE, but we ain't done yet. Not by a long shot.

On the benefits of leaving the darned house

2016-02-20T20:11:00.000-04:00

I'm an introverted lazybones by default, even when I'm with Gordon. But, one of the great side effects of having him in my life is that I feel guilty enough about that to get up and do stuff from time to time. It's good for him. It's good for me, too.

He's been enjoying the heck out of playing drums lately, so I suggested last night that we could visit the music store before going to see mommy at the hospital and buy him his own set of drumsticks. He went to bed with a big smile on his face.

We headed out to Long & McQuade in the north end of London. We walked through the door at opening time and were greeted by a sales dude. Gordon piped up immediately: "We need drum sticks!"

Sales dude showed us to the toddler sticks, and I got a set for myself, too. Dude even set up an e-drum kit for Gordon to try out. He loved it. We went to the front and picked out some picks with turtles on them, since G likes playing his (stringless) Elmo guitar with a pick from daddy's collection.

We went back to wandering the sales floor. Gordon loved seeing all the drums, keyboards, and guitars. Daddy nearly bought an amp on impulse. Yeah, we'll go back to that store.

Then, what the heck, I spot someone in the drum section who looks familiar. And the guy recognized me, too.

It was the *last* person I'd had with me on drums!

Yeah, when I lived in Toronto before moving to Halifax in 2005, I'd go over to this guy's house on weekends and jam. Me, 680News audio editor John Bowles, and this fella, Rick from Fan590.

Magic 8 Ball in 2005 celebrating the release of our live album. Rick on the left, me, John on the right.

We played one gig. One single gig. I turned that night into a live album. (Link to the original blog post from January 2006.)

Yes, the last human I'd played music with before Gordon came along -- eleven years ago -- was right there in the music store! Turns out he's retired from radio and living in London, too.

What are the odds, really? What are the odds?

Well, the odds are ZERO if I don't leave the house and choose to live most of my hours in relative solitude. Magical things happen when I do stuff. I've been taught this lesson over and over again, and I don't know why it doesn't stick.

Then we went to the hospital to visit Amanda, and Gordon and his mommy shared some great moments reading books.

Gordon asks why the old lady swallowed the fly (and everything else).

All in all, a great morning. Yeah, he didn't have a nap, but right now he's behind me, pounding out the rhythmic equivalent of dissonance along to the Ting Tings' "That's Not My Name." That's pretty cool.

And, he's spent most of the day asking "why?" to everything. Since before he was born, I anticipated the question "why is the sky blue?"

"Because if it was green, we wouldn't know where to stop mowing the lawn."

".......... green?"

"Just kidding. It's a joke."

The road to recovery lengthens considerably

2016-02-18T22:25:00.001-04:00

The world weighs on my shoulders

But what am I to do?

You sometimes drive me crazy —

But I worry about you

I know it makes on difference

To what you’re going through

But I see the tip of the iceberg —

And I worry about you…

-- Rush, "Distant Early Warning"

I never intend for this blog to be a chronicle of misery or complaints. I don't write these posts to solicit prayers or hugs or kind words or to make myself or Amanda look like heroes or martyrs. I just want to tell the truth and tell it well. It just so happens that this chapter of our lives is pretty craptacular, and I regret to report that it's about to get worse.

Yeah, I can't believe it either.

Mommy gets one of those snuggle moments that keeps her on the right side of sanity.

To recap the most recent hospital stay: my wife, Amanda, went into hospital about a month ago for a surgery to remove a big gob of ovarian cancer that was centered roughly where her uterus used to be. It had spread to invade her large intestine and vagina, and had strangled off a ureter, killing off a kidney.

The surgery went well in removing the cancer, but Dr. Sugimoto had to remove about a foot of bowel and splice the ends together near the sigmoid colon. But that splice broke in what's called an anastomotic leak, described as "the most significant complication after colorectal surgery and the major cause of postoperative mortality and morbidity." In a ten-out-of-ten painful experience, the sutured bowel broke, spilling feces into her abdominal cavity.

Emergency surgery forced them to open her all the way back up again, sternum to pubis. The doctors abandoned the ruptured spliced section and redirected the good portion out a new hole in her belly. That's a colostomy. The post-operative recovery was brutal, as feces continued to come out of the incision and drains, and she fought what appeared to be a significant infection.

The end of the bowel that was sticking out of the hole (the stoma) ended up dead and rotten. They trimmed it back at her bedside and hoped it would start 'producing' once it stopped 'bleeding and leaking pus.'

Well, she hasn't been producing for some time. In other words, no poop coming out of her new poop hole.

That, friends, was cause for serious concern.

(Here's the new stuff.)

A CT scan done yesterday revealed a blockage. Yeah, she's pretty backed up. The business end of the intestine has crawled back into her abdomen like the space slug that tried to eat the Millennium Falcon in The Empire Strikes Back, and it's shut itself off.

Just before the intestine slunk back into the stoma-hole.

Can't they just reach in, yank it out, pry it open and stitch it back to the hole? Apparently the surgical team went to med school and I didn't, so I'm going to say that they probably considered that, and it won't work.

The solution, if I can return to being grimly serious, is so rotten that I'm having a hard time not cursing up a storm.

Can't poop? Stop making poop or even pushing the existing poop until we can make the poop come out a new hole.
How do you stop making poop? Stop eating. Stop drinking. Even water.
Yes, we can open you all the way back up again and do yet another bowel surgery with probably yet another belly hole.

IN A FEW WEEKS.

Yeah, apparently post-surgical scar tissue is at its toughest, gnarliest, least-cooperative stage right about....now. Three weeks after surgery. After that, it starts to soften back up. Then, at about six weeks, they can get in and do more surgery without accidentally tearing your insides to shreds.

So, if I understand correctly, the proposed game plan is:
- TPN - total parenteral nutrition - food by IV direct to bloodstream - for the next three to five weeks. That's three to five weeks of no food, no juice, no water, period.
- Then, another surgery
- Then, another recovery including pain management and taking another crack at healing up that enormous abdominal wound

You probably read yesterday's post about how I'm fed up, Amanda's missing Gordon so badly she's nearly hysterical (please pardon the antiquated term), and the whole thing has us really wishing it were over.

Well, more than double that, because if there's an end to this, it just got a lot further away. You thought one week in hospital would put you out? You thought a month in hospital was enough to take you to the limit? How about maybe another two months in hospital, half of it with your only nutrition being pumped into an IV?!

As I said at the top, I'm not writing this to solicit sympathetic remarks, and you know why I'm mentioning that today? Because WHAT can anyone POSSIBLY say at this point? I'm out of things to say. I'm just flat-out WTF WTF WTF WTF WTF?

I'm torn between wanting to scream and curse and stomp and yell at a doctor or something .... and being smart enough to know that it wouldn't help one tiny bit. If she needs this to NOT DIE, then me getting mad about it isn't going to help. But I'm still mad! I'm mad in spite of my own understanding.

If you know me, you know my logical mind can usually fight my emotions and win. Handily. It's not even a fair fight most of the time. But they're really going it this time. It's a slobberknocker. I'm f'ing pissed, and without any real target other than the unfairness of it all. But "smart me" knows that fairness is an illusion anyway. None of this has been fair. But it's been UNfairness meted out in doses I could tolerate.

I know I'll tolerate this somehow. I always do. WE always do. Hell, do we have much choice?

I don't know if I've been fighting something over the past month or not. If so, it's been fighting to not have to call on others for much help. Others have been helping, and I'm grateful for it, but I try not to *ask* for much help. I may need to surrender, though. I may need to *ask* for something.

Amanda might need to surrender some, too, and I don't know what or how. It's not even for me to say. She's a stubborn broad, and that usually serves her well, but there might be some facade of composure she'll have to release in order to survive the coming famine.

Sometimes I think these posts out before I write them. Sometimes I just sit down and type and good stuff comes out. Most of this post has been me thinking out loud. If it's coming across a little scattered and uncertain, I assure you that it's because I am.

Being Gordon's primary caregiver right now, Amanda's loving partner, the central clearing house for information in the family, and manager of two radio stations, I've put myself in a position of needing to have my ish together. I am not in a spot where falling apart is really an option. But geez, you'd kind of understand if it happened, no?

Weeks go by and Amanda's still not home

2016-02-17T22:09:00.001-04:00

Here’s a little trap

That sometimes catches everyone

When today’s as far as we can see

Faith in bright tomorrows

giving way to resignation

That’s how it is – how it’s going to be

It’s such a cloudy day

Seems we’ll never see the sun

Or feel the day has possibilities

Frozen in the moment –

the lack of imagination

Between how it is and how it ought to be

- Rush, "How It Is"

A repost of a Facebook post from last Friday:

I got to see Amanda have her surgical wound tended to today.

Part high-tech (vacuum machine, space-age polymers), part barbaric (picking bits of flesh off with tweezers and rinsing a chasm of an incision with salty water).

I can't imagine how excruciating her pain must be, and how vulnerable it must make her feel to have her insides exposed, with materials being applied and removed to and from a deep slice right through her core.

Lending a hand until it turns purple.

And I don't know how she endures it without blacking out or throwing up every time it happens.

And I don't know how she didn't squeeze the fingers right off my hand as I sat by the bed, but a few fingertips would've been small potatoes compared to what she's endured so far.

At the time I wrote that, we thought she might be coming home on Tuesday of this week.

That didn't happen.

There's significant improvement: She's eating again. She's drinking again. Her wound is healing, sort of. She's still leaking fluids. She has no overt signs of systemic infection. She's off the IV and is on less pain control medicine now.

But her stoma -- the hole in her belly where she's supposed to be pooping into a bag -- is not producing. In other words, her new poop setup isn't pooping. And that's a problem.

She went for another CT scan today. Depending on what that reveals, they could wait and watch, or .... I don't really know the other "or" options ... or do another surgery which would roll the recovery all the way back to zero again and perhaps result in another ostomy.

She was supposed to have been in hospital for a week. I think we're on week four now.

Amanda misses Gordon like crazy. He misses her, too. Of course, I miss her as well.

I don't have much new to say other than I'm really kind of sick of hospitals again. I mean, the staff here in London have been terrific, and the hospital itself is just fine. I'm just tired of her being there, and I'm tired of going. That's all. It's not like any of us were ever "up" about this, but it's really worn out its charm, if there ever was any.

Hey, I have some gory photos to share, but I won't. Too gory, too private. I'll just say that looking at Amanda's wide-open surgical scar was roughly equivalent to seeing all the different ways you can cook a steak, from fresh to rare to medium to well-done. The rare section is going to heal up nicely. The well-done section will have to be "debrided" which is a strange word for cutting off dead stuff until you get to something that bleeds. (Don't click the link if you're bothered by maggots.)

On the up side, Gordon is still a freakin' laugh riot when he's not acting up. He's done a lot of fun stuff with family: Auntie Duff has taken him to his first movie and to Storybook Gardens to see horses and sled dogs and roast marshmallows; Auntie Amy has had him over for tacos and hip-hop dancing; Auntie Shannon took him to the farmers' market at the Western Fair District; and he always has shrieking, dancing, leaping up and down fun with Nana and Grandpa. I snapped this photo of G waiting for Grandpa on a snowy morning this past weekend.

Waiting for grandpa.

And I'm having fun with him, too. So much fun, even as we've both been fighting a cold.

He's been an absolute treat as he gets more enjoyment out of music. How lucky am I to have a toddler who ASKS to listen to Rush and Ween? And he wants to go into the studio to play the instruments and jam.

I love being his dad.

I look forward to having his mom home to share in the fun! Yeah, we have no idea when it will be, but I try to imagine that however long it is, every day is one day closer to having it happen.

Sketchy bowels

2016-02-03T22:10:00.001-04:00

Just a quicky update without poetic musings or gory photos.

Amanda felt better today than yesterday. Not good, but better. That's a win. She's allowed to drink clear fluids again, so I brought her bottles of Apple juice, iced tea and Schweppes ginger ale. Go easy on those.

Tomorrow we get a tutorial on colostomy how-to. I expect it will be as yucky as you imagine. Changing diapers for the past nearly three years may have prepared us somewhat.

Two images for you.

First, what appears to be a measurement of the incision on her belly. I got a small peek at a small part of it today and ....

That's a big boo-boo.

Yeah, for real.

Second, I got to ask Dr. Sugimoto a couple of questions about the surgery and how Amanda could have ended up with yet more free-floating poop in her abdomen. This drawing explains it all.

Anatomically correct, from a certain point of view.

I am not going to explain what I drew, but I assure you it was satisfactory to Amanda, which is good enough for me.

I hope the nurses don't get mad because I wrote on their whiteboard. Or that I inadvertently made "discharge plan" a terrible pun.