On the benefits of leaving the darned house

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

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…


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

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.

Holding hands tight until fingers are purple
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.

Toddler looking out the big window into the snow
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

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. 

In a dark valley of infection

Warning: vivid medical description with photo. 

Tuesday afternoon. Some worry yesterday when they found poop coming out of her big incision -- I haven't heard directly from the doc but I can't fathom how that's ok. Pain and rigidity in her abdomen and pus around her stoma -- also not good. 

Docs wanted a CT scan to learn more. Sounds like she had a hard time swallowing the contrast drink. She's been nauseous and pretty much out of it all day today. Looks like her IV suite includes Gravol. (Below) Lacey has been here knitting all afternoon as Amanda sleeps. Nurse says the CT report is in but nobody's heard what's in it. Pathology results from the tumor removal should also be in any day, we figure. So, no good news at this point. I'm kind of worried, actually. Doesn't look like a good day for Gordon to visit. The doc might be better off phoning me than trying to talk to her today. At least she's finally getting some sleep. She's been riding the hydromorphone button for days trying to get relief.



Prior to yesterday, they'd packed the outside of her surgical wound with a sponge foam and sealed with plastic along with a constant-suction vacuum designed to take the healing-juice goop away and let the body regrow the connection from the inside out. The gunk drained into this gory tank of yuck. 


Now they worry it could end up sucking bowel out or something, so it's back to old-fashioned gauze packing and changing. Ouch. 

A short time later:

"This is awful," says the doctor as he leads an update that Amanda takes in aurally, motionless, with a cold washcloth over her eyes. Amanda Simpson has been out cold or puking most of the day. Doc confirms she has an infection in her pelvis. Can't say how much or quite where, as the CT contrast drink didn't travel far enough to get a good image. May do new pics with contrast put in the other end. Her stomach is full of bile and undigested contrast shake from last night. May pump her stomach tomorrow if she's interested. Tube up the nose sounds like torture, but so is 24/7 nausea.

Main concern now is her mental state -- Amanda is usually....what's the nice word....vocal. For the past day she's been dark, withdrawn, even confused. We are in for a dark time of hard recovery and can't afford to have her give up. Doc says she's not at death's door -- not even in the neighbourhood. But this is not going to be a rapid comeback. Her body has some serious fighting to do and there's not much more for the docs to do to help it. 

Me, I'm glad she's finally resting, but I know she's scared and in a dark place she hasn't seen for a long time. I hope once the nausea clears, we'll have a comm line back to her spirit and get her back in the fight.

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

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