first steps.

I'm counting today at the first day of the rest of my life.

My mom, after graciously dropping everything & basically moving in here for over 2 months, has gone home. Now Frankie & I officially embark on our adventure.
So far, that adventure has involved mostly eating snacks, naps, flipping through books & exploring. Every once in a while she stops what she's doing & just looks at me & smiles. She's never really done that & it's making me think....okay...yeah....her & me. We can do this.

The last 2 weeks have been weird - but not as weird as I thought they'd be. Really, I don't think it's all sunk in yet. Maybe it never will? It feels like I was in a 4+ year long horror movie where I could never, ever relax because the bad guy could attack *at any time* and now the bad guy is gone & never coming back, but he took my most very best friend with him. 

Last night I went out - to a friend's house to eat (lots of) pizza & casually celebrate some birthdays & drink some drinks. I wasn't going to go, but my mom (bless her) told me I should. I went, I had fun. I laughed - I laughed for real. I was reminded that my life is going to go on. One night, about a month ago, as I was leaving the hospital Gord asked if I was reading & singing & playing with Frankie "Yes! Of course!" 'Good....keep our life alive.' I'm trying to - Gord, I'm really going to try. I want to make a happy, colourful, simple, creative, safe home for my kid. The same as Gord & I wanted to do together.

Re-reading through this blog now, I realize there are some holes that need to be filled. At the visitation, I was talking to a good family friend of the High's who came to visit Gord often while he was in the hospital & was there the day he passed. "I need to fill in the blanks - it's like one day he's sitting up in bed & everything's going so great & then the next day it's all dramatic & 'all treatment has stopped!'" and she said "well, that's kind of exactly how it went." And yeah, you know? That *is* how it went because everything was so up & down & all over the place. So, in a totally self indulgent way, if only to have it all written down somewhere so that if she's ever interested, Frances can read all about what a superhero her dad was, I'll probably start sharing my memories of Gord's illness.

Service streaming

Since Gord's friends span the globe, there have been requests to stream the service. So, if you are unable to make the service on Monday, please feel free to tune in & join with us as we celebrate him.

Our friend Jeff has set up a justin.tv channel & will be streaming the service.
Here's his channel: http://www.justin.tv/jeffreymutch

You can go there on Monday a bit before 11am EST and he should have it up and running, barring any problems with a mobile connection. justin.tv does have ads in the stream, but from what he understands they are just at the very beginning, so maybe start it a bit early to avoid interruption.

You can go to this link at any time beforehand to make sure you have the right plugins/codes installed. Your browser should guide you through the instructions if you need to install anything.

 Technology, eh?

from our family..

Dear Friends and Family, we would like to sincerely and with heartfelt gratitude thank all those who have through kindness and caring comforted Nicole, the High and the Winer families in this time of grief.  Your thoughts and prayers are deeply appreciated.
 
Many have been asking how they can best help Nicole and baby Frankie in a meaningful way. The family is extremely grateful for this collective outpouring of concern and is setting up an Education and Care Fund for Frankie.
 
Those who wish to contribute to helping to contribute to Frankie’s future can make a personal donation to Nicole. All funds collected will be going directly to securing the well-being and care of young Frances. There will be an envelope located at the visitation throughout Sunday for convenience.
 
Again, thank you to family and friends who have expressed their condolences. Though we can never replace the loss of Gord’s light from our lives, we have a beautiful living reminder of the love he brought to us and to this world and for that  we will always be endlessly thankful.

Visitation will be at the Cresmount Funeral Home, 322 Fennell Avenue East, Hamilton on Sunday January 22nd, 2-4pm and 7-9pm. Interment will be held Monday January 23rd, 11:00am, at Cresmount 322 Fennell Avenue East, followed by a celebration of Gord's life, friends and family at the 1020 Upper James St Cresmount location also in Hamilton. For additional information: www.cresmountfennellchapel.com/

With Love,
The Winer and High Families

plans.

The last two days have been so surreal.

I haven't really had a chance to process everything that has happened - and I'm not just talking about Gord dying, I'm talking about the last 4 1/2 years of my life. This morning I woke up with my whole body aching - my back & shoulder muscles hurting, my legs, my feet, my head, everything felt beat up. I said to my dad 'I feel like I ran a marathon.'.... "you have."
I'll write more (lots more) about this when I have had a chance to sit down & think clearly for a while.

Yesterday funeral arrangements started being made - for those of you who would like to attend:
visitation: Sunday, January 22 (Gord's 41st birthday) 2-4pm & 7-9pm
Service: Monday, January 23 11:00am.
Both at Cresmount funeral home on Fennell ave in Hamilton.
A reception will be held afterwards at the Cresmount location on Upper James. When my dad & I went to see the reception room & decide if it would be big enough, "Do you mind noise?" I asked... "We LOVE noise." - so, if you are inclined, feel free to bring your instrument of choice.

In lieu of flowers, some family will be setting up a care & education fund for Frankie. I'll pass along more information as it becomes available. At first I was like 'Nawwww...' but she's already kind of a genius, so I'm pretty sure she's going to at least graduate high school.

If you are on facebook, please feel free to join 'gordslist:Friends of Gord High' which, since it began yesterday has already proven to be an amazing community of people who just love the heck out of this guy. It's really wonderful to read everyone's stories & memories of him.

xoxo

GPH

Gord High.
Jan 22, 1971 - Jan 16, 2012.

boomselection

Only barely scraping the surface....(and proper alignment be damned!)
(some 'rock' not included in his boomselection, but I got those songs on my mind tonight)

clarity

The view from 14B is really something. The whole west of the city is sprawled out in front of us. You can see for miles (and miles and miles and miles and miiiiiiles). I've seen a lot of different skies from this window.
The other day, when there were snow flurries, I couldn't see anything out the window, only white. I could make out nothing of the streets & buildings I knew were out there. Some evenings the sunset is incredible - Bright red (sailors delight!), the sky has on a couple of occasions looked like a giant jug of Tang. I can see the lake from here & everyday, since we've been here (2 months now), it has looked cold & mean. Choppy.
Right now, the sky is perfectly clear, dark (of course, it is night). I can see lit up neighborhoods far, far away.

Looking out this window is often very reflective of the kind of day we're having inside this room.

I've known for a while Gord would not 'bounce back' from this the way he has miraculously recovered from so many other things he's had to suffer through over the last 5 years. Numerous pneumonias, fungal lung infections galore, blood infections, H1N1, a MASSIVE blood clot spanning all along the whole entire length of his right leg, and the worst of it all, the 3+ years of grueling treatment (chemo, radiation, more chemo, more chemo, a short interlude - time enough for us to regroup & remember there is more to life than clinic visits & then,..... more chemo, more chemo) to 'cure' him. Not once did I ever think 'this time he won't make it.' Not like this time.

For the last 2 months Gord has begged to help him get out of here.  I'd try to explain it to him & he'd nod & then say 'Okay, so get the scissors & Cut Me Out of here!' Last night I began thinking about 'what should happen next'. He's not going to recover from this, I've known it for a long time but I guess I was just holding out for some hope, who wouldn't? We were/are ALL hoping for a little tiny miracle. I know Gord's wishes, and what was happening was in no way part of them.

So this morning I came to the hospital early. Still sleepy, I curled up (as much as you *can* curl up in the hospital recliners) and slept beside him. Laboured breathing, a weak cough, infection in the lungs but not enough energy to cough out the bad stuff. Painful even to listen to. When we were both awake, we talked - like, THE talk. The talk I've been trying to have with him for a while not but he just wasn't ready (neither was I, really). "I thought about it last night. I'm ready to quit."

Treatment has stopped. Now it is about making Gord comfortable & happy. It's all I've ever wanted for him since the beginning of this nightmare. I'm so, so thankful that he helped me to make this decision.

I didn't think this was how our story was going to unfold, I really didn't.

I'm with him, beside him, not leaving. Listening to his favourites, being taken good care of by the absolutely amazing staff here at PMH who have come to know & love Gord as well.

My next post is going to be a bunch of clips I've been watching tonight from his 'boomselection' folder of favourite sound system & reggae clips. Join me in celebrating him & wishing him absolute peace and strength. Hold our dear, dear Gord close to you during this next little while. He's had one  hell of a time.

xoxoxoxo

foggy day.

The last three days were the best gift. They were just what I wanted. To see Gord smile, laugh, engage in conversation, share ideas...it was wonderful.
Yesterday he had 23 visitors! TWENTY THREE! He was moved down the hall to a larger room & I get the feeling they did it to accommodate his well-wishers.
Today has been mostly sleep. He's exhausted. There's a little confusion, but mostly he's tired. They did a lumbar puncture to check for meningitis & a CT Scan this morning to check on his lungs. He's had a cough for a couple of days.

The CT Scan was clear for pneumonia, but showed that his lungs are being pushed up a little by his diaphragm from lying in bed for so long.  We'll get the results of the LP tomorrow.
 
He's slipping. I know it. I am nuzzling my face into the crook of his neck as much as I can & just trying to savour & drink up these moments with him. I'm trying so hard to stay in the moment, stay present. I will worry about how I'll feel when this is over when it's over. I did go to the PMH library for some preemptive guidance. "Can I help you?" The volunteer asked. "Yeah...do you have like...a pamphlet on how to deal with loss? Like... a brief bullet point list of how to deal with the crappiest shit ever?"
"Actually, yes we do."

good day.

Yesterday he was awake & talking & cracking jokes & engaging in conversation for all of the day. Referencing SCTV skits, making up songs about incline planes, talking fondly of Bridge Mixture. He had many, many visitors & he was a great host to each one of them.

I believe this is a gift. One of my big fears was that I wouldn’t get a chance to make more good memories with him - that he would kind of just slip away. He talked a LOT about Frankie today, which was just wonderful. For a long time he wasn’t asking about her at all & once when a nurse pointed to pictures of her in his room & asked if she was his daughter, he said no. (my heart? broke into about a billion pieces)… so the fact she’s so much on his mind is really wonderful to me. His little Polkie-dot.

Being so alert & talky is of course wonderful, but it also makes it so much harder to believe that the treatment isn't working. I know being put back on the TPN (nutrition through his IV) can account for his new energy & clarity can in some way. I guess I just want to think that it isn't that. I want to think that it's his body getting stronger on its own. Who knows? I am just thankful for it.

Part of me is in denial, and I know that (is it still denial if you acknowledge the denial?). The other, larger part of me is fully aware of what’s happening & what will happen. I just cannot think past like, the next 10 minutes ahead of me. In my everyday life I am surrounded by many people who love & care about us, which is a big comfort. I’ve been told several times by lots of people that they will not let me fall.

Right now I am just trying to find some peace in all of this, so that I can maintain some composure & clarity in this incredibly surreal time in my life.

walking.

This is such a hard place to be: stuck between trying to come to terms with what we've been told will happen, but also holding on to some glimmer of hope. The Campath isn't working - they aren't giving him any more of it & the GvHD is just going to keep going. The Dr said that another infection will likely come along, probably from the stomach. I can't help but hope that there will just be a tiny hook & it will catch on something, on all of the sickness inside of him & scoop it up in one big net.

Saying that, today's visit was actually a pretty good one, especially compared to the last 4 days or so. He was up & talkative, trying to bribe us with Red Lobster dinners if we'd help him get out of there. I played Bo Diddley's  'Our Love Will Never Go' & he sang along. Frankie came in for a little visit - it was overwhelmingly sweet. He smiled at her, gave her all his best 'Dad' faces - she beamed at him & seemed pretty intrigued by his bank of IV pumps.
He spoke at great length (like....for hours) of pizza, calzones & panzerotti.
Mostly he wants to get out. He wants to walk. I want those things too - more than anything.
"In your mind, can you picture yourself walking?" "Clearly."
When I picture Gord walking, I am immediately taken back about 5 years ago. We worked fairly close to each other & after work, we'd both start walking & meet halfway. No matter how crowded the sidewalk, I could always spot him from far far away. His walk. His pants rolled up, backpack, Gord Hat. We'd start waving at each other, big enthusiastic waves from a block away. Then together we'd walk randomly, taking this or that street home, picking up ingredients for our dinner. Stopping in the park. Holding hands. Hugging & kissing at stoplights.

I can see it so clearly.
What I can't see clearly, or at all, really, is what it will be like to not walk through life with him.

sliding.

I'm at home, Gord's mom just called from the hospital.

He's not responding to the treatment. They have him on 'Do Not Resuscitate' if things go that way. The other day I found his living will & in it he states he would rather go quickly than have everyone suffer through waiting for 'miracles that never happen.'

His nurse suggested bringing Frankie in to see him.

Thinking now of all those consent forms saying we understood perfectly well what could happen, we smugly signed them, fully believing in our hearts that this was The Answer. This would give us what we wanted - a long(er) life with each other & with our baby.

So now I'm waiting for my parents to get back here, so I can be with him, take our beautiful girl to see her daddy.

There is no timeline on any of this, only a definite end.

Didn't know I could feel so broken.

up and down.

It's hard to take a day off from being at the hospital.
I stayed home on Tuesday & when I got back on Wednesday it was like there was a box of misshapen puzzle pieces & I was left to figure out how they all fit together.

Remember how I said some days are good & some days are bad?

The first thing I noticed when I came into his room was that he was shaking & his eyes were huge - bulging. He said there was something wrong, he felt weird & that he couldn't stop shaking.
The second thing I noticed was that the TPN (nutrition bag he was on before, but then taken off of) was hanging back up on his IV pole.
So his nurse comes in & tells me he's hypothermic & has been running a really low temperature of 33. He was being sent for a CT scan of his gut to check for infection (sometimes, if the stomach lining is very inflamed, bacteria from inside can get out into the blood stream) & to also check on the progress, if any, of his stomach lining rebuilding. They had also taken lots of blood cultures and a mouth swab to check for infection there.

See how quickly things can change?

The next day, we got the results of the CT Scan - looks like things are actually more inflamed than they were the last time they did a scan. (my heart sank about 3 levels here). But what about how well his diarrhea seems to be clearing up? Turns out that sometimes, when the stomach is so inflamed, it can 'yadda yadda yadda.....' I kind of zoned out here but watched the Drs arms & hand motions to get the idea that the gut kind of seizes up stops producing anything at all.
He does have a bacterial blood infection, but it isn't the 'bad one' as the Dr put it, it's an infection from his hickman which he's had before. He's on about 3 different antibiotics for it.

For most of the day Gord was quiet - not saying much to me but at one point, was staring so deep into my eyes I tapped on his head & said "You're having a conversation with me in here." He nodded. I touched his lips & said "Try to make some of it come out of here." He couldn't.

They did an MRI of his brain to make sure nothing fishy was happening that could account for his un-responsive behavior. Everything was clear, so I have a feeling the lack of conversation is just a result of him being flat out exhausted.

I left the hospital at about 6 so I could go to a friend's birthday dinner. I thought I could handle it but it just felt so wrong. What I had just come from, what I spend my days doing - is so different, so starkly different than everyone else I was with. It was good to get out & see friends but again, like I mentioned in a previous post, all of this, all of these years of dealing with this sickness & now this post-transplant Hell have stolen so much from us... like the ability to just sit & drink a pint & talk & listen like a 'normal' person.

Gord slept through all of today. My Aunt & Uncle visited in the morning, but he was asleep. Then, Arlene, Graham & Felix cam, but he was asleep. Then I went with my dad....he was asleep. I stayed until about 9:30 & he barely stirred the whole time. He looked nice & relaxed & the nurse told me he hadn't had any Morphine today - this was all Gord induced rest. The best kind.

Inspiring.

Judging by my facebook news feed, I'm not the only one who spent a lot of their day looking back through Jeff Harris' mind blowing photography project. Read about it here.

A photo every day since January 1, 1999. A photo every single day, including the day he found out he had cancer in 2008. Including the days he went through treatment(s). Everything.

I followed this project a little after it started. Jeff was in a band with a couple of my friends & I had heard he was taking a photo of himself every day. What I didn't realize, mostly because I got absorbed in my own real life, is that he's been doing it ever since & he's still doing it.

Today I looked at the photo he took after his diagnosis. Then, I spent a long time looking at the weeks leading up to that day. Photos of a guy who had no idea he had cancer. I've done the same with photos I have of Gord - photos of a smiling, oblivious Gord (and me) - no idea what was up ahead. "I was dying in that photo and we didn't even know."
The thing is though, the thing that makes Jeff's project SO AMAZING (really, truly, insanely amazing) is that he has not let any of this stop him. I was deeply inspired to see a photo of his grueling surgery (which left him paralyzed in one leg) & then, in a photo dated one week later, he is smelling flowers in his garden.
He is out with friends. He is climbing. He is being funny. He is in pain. He is living.
His website is here: jeffharris.org

Some 'us' update:
My mom went back to Hamilton for a couple of days & tag-teamed Arlene in for back-up. Arlene spent the day with Gord on Sunday, then came back here to stay for a couple of days. I went to visit Sunday night but he was right out of it - I was watching a Scottish Tattoo on tv & even the bagpipes didn't make him stir (they did make my eyes well up, as did the highland dancers. I think I'm getting soft in my old age.) I stayed for 2 hours & kissed him on the forehead when I was leaving. He opened his eyes & looked a little freaked that I was there. I told him I'd be back in the morning.

His blood levels are taking a real nose-dive, which is to be expected - he got a third dose of Campath (the mega-drug to fight the GvHD) on Monday. Hopefully, the counts will start to creep back up in the next couple of days. He's exhausted, but still far more with-it than he was a couple of weeks ago. His liver enzyme numbers seem to be getting back into the normal range (Hoooooraaaaay!) and his kidneys are still doing good. The diarrhea is really slowing down as well, which is the biggest thing - and the consistency is starting to 'mush-up' (guys, it's gross, I know, but this is a big deal  & a pretty important indication as to how/if his gut is healing) When I reported this to the Dr he said "Okay, this means the bowel is starting to...." and then he made a big sweeping motion with his hands. I assume that is good. These improvements are important because I've been told that if after 2 or 3 Campath treatments there is no significant change in the GvHD, then there probably won't ever be.

Gord's mobility is still extremely limited - he's starting to move & use his left arm more, and he's got us doing lots of leg exercises with him, but he still cannot move them on his own. This is going to be a really long stay in the ole PMH - I don't mind though. 2/3 weeks ago I felt like he was hanging on by his fingernails. Now, I feel like he has a grip up to his knuckles, at least.

New Year.

Start as you mean to go on.

First day of 2012: music, clapping, crawling & squealing with delight with Frankie, food & fun with good friends. Taking out the garbage/recycling when it is full instead of trying to smush one. more. thing. into it. Picking up old projects & breathing new life into them. Spending time with my guy (even though he didn't even know I was there). Seems like every year since 2007, I've said 'Lets hope next year is better/our year!' Well, I am done with saying that because it never seems to really happen. Instead, I'm going into 2012 with some key goals:


Keep it Simple.
Keep it Sincere.
Keep it Tidy.


I rang in the new year alone. I had a couple different offers, but I wanted to be by myself. Frankie proved to be a lightweight & was passed out fast asleep by 6:15. My best pals came over for a bit before heading to our friend's party & then I spent the night knitting & watching Electric Circus (augh!). I had other plans for the night that never materialized: make room in our 'studio' for a guest bed, purge some yarn & fabric from my stash, cut my hair, have a drink & give myself some bangs... but the night got eaten up quickly & it turned out my suspicions about New Years Eve have been right all along - it's just another night. You don't cease to exist if you (gasp!) don't *do* anything!


I called Gord's room at 11:55 so I could hear his voice & wish him a Happy New Year. His friend Matt was there, which comforted me a lot (thank you, Matt!). The days since I wrote about his good days have been more of the same. Still extremely tired, but at least now able to listen in on conversations & offer the odd comment... or smile... or eye roll. So at 12 o'clock he was there, in my ear & in my heart, wishing me a Happy New Year. "This has been one crazy year, Nicky." "Yeah, lets make this one a little more mellow."