caregiv'r

anniversary.

2012-02-08T08:22:00.000-08:00

This last week was our anniversary. On February 4th, 2006, we were on my back deck smoking cigarettes & Gord asked me if I would want a boyfriend.
"Depends on who it was"
"It'd be me".
"Well then, I think that'd be great".

We had had our first date only 2 days before & I guess we both knew right away that we'd be a good match. After we became boyfriend & girlfriend on my back deck, we went to a show. His friend's band was playing. When we got there, I ended up knowing a lot of people since his friend's band was opening for my friend's band.
'You're out of my league' he said to me.
When he went to get us beers, I looked at him from across the room & wondered if I could 'date an old guy'. Thinking back on these two things now, knowing what I know about him, and about me, it seems pretty hilarious. HE was out of my league (but eventually I think our playing field evened out quite nicely) and yeah....for someone who would have made a terrific 'old guy' he wasn't there yet. Not at all.

From then on we became nearly inseparable. I'd go to his apartment & he'd cook dinner. We'd drink coffee & he'd make music while I sat on the floor knitting. We'd curl up on his futon & listen to radio... The Best Show or This American Life or The Great Eastern. We went for lots of walks & bike rides. We watched his fine collection of The Urban Peasant on VHS. We'd make plans - lots of them.

It's really crazy to think that we only spent 6 years together. It felt like a lot longer than that. He moved in with me June 2007. Very shortly after that he started getting sick - undiagnosed. He went to the Doctor right when things started. The problem with Leukemia I guess is that the symptoms are so random & of course checking for cancer isn't the first thing they do - he was put on an inhaler, he was given a prescription for physiotherapy, he was told to take advil 'as needed' - even if that meant all day long. After months of back pain, fatigue, excessive night sweats, body aches and vomiting we went to the ER. It was Sunday, October 21, 2007. I started my brand new job the next day. By the end of the week, he had been diagnosed with Leukemia.

And that's how it started.

first steps.

2012-01-29T12:38:00.000-08:00

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

2012-01-21T18:31:00.000-08:00

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..

2012-01-18T13:45:00.000-08:00

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.

2012-01-18T12:50:00.000-08:00

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

2012-01-16T20:27:00.000-08:00

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

boomselection

2012-01-14T20:06:00.000-08:00

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

2012-01-14T18:34:00.000-08:00

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.

2012-01-12T15:12:00.000-08:00

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.

2012-01-11T05:53:00.000-08:00

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.

2012-01-09T20:44:00.000-08:00

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.

2012-01-09T11:06:00.000-08:00

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.

2012-01-06T11:33:00.000-08:00

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.

2012-01-03T16:55:00.000-08:00

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.

2012-01-01T20:08:00.000-08:00

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."

good.

2011-12-29T21:15:00.000-08:00

oh! It's a long one today.

One thing I can never bring myself to say is "He's getting better." These are still such critical times, things change so drastically from day to day. One day he is up, the next he is down, the next he just IS. I feel so gloomy, so pessimistic when I hear people say 'He's getting better!' - I clench up, I even feel a little bit queasy. I have to - emotional kneepads. I've been around all of this for long enough to understand that a lot of this 'journey' (as Gord called it today while rolling his eyes. Good on you Gordie) is up & down & until the day when he is sitting in our Living Room, I can't declare him 'better'.
I will, however, celebrate very happily when he has *good days*.

Yesterday & today have been very good days.

The first good thing is that when we arrived to the hospital yesterday (me, my cousin Shane & his fabulous lady Frances), we did not have to put on 'isolation gear' - no gowns or gloves. When I visited the day before, I had to gown up; there's currently a C-diff outbreak in the transplant unit (uhhh.....yeah.) and they were concerned that Gord may have it. Not having to put on the gown means that he's in the clear, which is a (super duper) good thing.

When we got in the room he was real sleepy. He smiled once or twice, and I think he shrugged at something someone said, but mostly he just rested. Arlene, Graham & Lorraine arrived soon after & Shane & Frances said their goodbyes.

If you know Gord you have probably, at some time or another been witness to, or have been on the receiving end of a 'Gord stare'. His nurse had asked that people step out of the room for a moment, but I stayed behind. He asked me to hand him the Kalimba that Graham had brought him. He turned it upside down & was pulling up on the prongs. 'Oh...no.. you hold it like this & then you press down on the prongs.' I said. He turned his head & stared at me. He stared hard. Gord Stare. He didn't have to say a word - his eyes were saying it all. "I know how the play the God Damn Kalimba, Nicole." Both the nurse & I laughed. Then, more resting.

Later that afternoon the clouds parted just a little & he apologized for being a bore. "Not at all Gord - Boring is good." "It is Good, and the way to be more boring, is less Morphine." YES! Yes it is Gord!
He asked me to stay & watch Coronation St with him ('please? As a Christmas gift?'), and he asked me to tidy his room. He has the same idea practically everyone has at the time of year - purge the excess, keep the good stuff. He asked that everything on the wall in front of him be taken down except for one thing; a picture of his Dad. "Good idea" I said.

Just as I was leaving, Matt came by. "What treats do we have to offer to Matt?" We didn't have any, but I promised Gord I'd bring some the next day so that he may be the ind of host he's well-known for being. (and good treats, too! Delicious baked goods, baked by Ailsa, all the way in Newfoundland!)

I left him feeling good.

This morning, as I was putting Frankie down for her nap, he called me. "I dialed the phone! By myself!" Amazing. He hasn't been able to do that for quite some time.

So I came to him this morning feeling even better.

Mike helped to pick up some things for him at the grocery store (*REAL* vegetable broth, rice stick and some sugar-free cookies) and came with me to the hospital. Gord played the Kalimba, chatted some, did some exercises with the physiotherapists, and then asked Murphy if he would please go & get him a Korg Monotribe.

My brain exploded.

Within the hour, Mike was back with it & Gord was sitting up, twisting the knobs, flicking the switches & making my eyes well up. It had been far too long since I had heard him making music. It was so awesome. He's been experiencing very limited mobility - only really moving his right arm. Today though, he had both hands working. Maybe the physio dept at PMH should invest in a couple of monotribes for the rest of the patients because because guys? When he was done making music, he held the synth in his hands & did some bicep curls with it. I am not kidding.

The whole day was peppered with things that made my heart sing - he asked the nurses & the Dr questions (!!! he hasn't done this for over a month & he is normally right on top of that kind of thing), he told me something I was doing (something very funny) wasn't funny & when I said to him 'really?' he said 'okay, it's a little funny.' He had no morphine the entire time I was there. He told the nurses he wanted to 'get away from that stuff.' When I kissed him goodbye he tried to get fresh with me.

I don't know what tomorrow will be like, could be the opposite of all of this. I'm not going to get wrapped up in it. I'm just going to rest well and easy tonight knowing that the fog has lifted a little.

He's rocking steady.

christmas eve.

2011-12-24T13:11:00.000-08:00

On my way to the hospital this morning, I thought about what my blog entry would be today. I can so easily remember this day last year; how just pure good everything was. I was happily & healthfully 5 months pregnant. We had rented a car to do our holiday traveling & got upgraded to a really fancy Volvo. It had heated seats & voice commands & felt so safe. We discovered the HOV lanes & just coasted from Toronto towards family. On Christmas Eve we went to the annual Winer Christmas sing-along-athon & Gord was drunk & happy. On Christmas Day we made our way to Niagara & spent an incredibly cozy & relaxing time with his family. We were happy & excited & anxious to get into the new year.

I'd give anything to go back & just drink it in deep.

When I got to Gord's room this morning, I found the same kind of Gord I did a couple of weeks ago. A Gord who was confused & agitated. I want to scoop him up, I want to take him to a safe & happy time. In November when he was just admitted to the hospital (and I thought 'oh! Dehydration! He'll be home in a couple of days!' ...oye...) he asked me to just talk to him. 'About what?' 'Tell me about the future.' So I started telling him about how one day we'll live in a house with a backyard & a garden & trees. 'No... tell me about Christmas Day.'

Our intention was to spend a very quiet, cozy Winer-High Christmas in our apartment. Wearing our pyjamas & eating delicious food & just being thankful. Thankful for being together. Thankful for this second chance. Thankful for Frances. So I laid it all out for him - all the naps, old movies, music, and good food we'd eat.

How different things will actually be from our original plan. Gord is in the hospital & I'm in Hamilton, celebrating the holidays with my family and it is killing me to not be with my best friend. I miss him like crazy. They are doing blood cultures to find out if an infection is causing the confusion, and he's getting a sitter to be with him again, to make sure he's okay. Took every single thing in me not to stay there with him today. In the elevator, I bet I didn't even have to press 'M' - the guilt I was feeling could have sunk me down all 14 floors on its own.

So I'm sitting on the couch at my parent's house. Frankie is having her afternoon nap & I'm writing this, listening to the Todd-o-phonic Todd show on WFMU & thinking lots about Gord & this song comes on. And all I want to be doing is kissing Gord under the mistletoe.

Merry Christmas everyone, hug your loved ones extra tight this year.

xo
Nicole

In the key of P.

2011-12-20T06:28:00.000-08:00

I have been so immersed in my own life, in just being with Gord & focusing on Gord that I don't think Paul's passing *really* registered with me until I was standing in a room with Gord's family, waiting to be piped into the chapel by my father & the funeral director confirmed with Arlene that Paul's Harmonica was to be placed on top of his urn. That's when I was snapped out of my bubble, the bubble of home. hospital. repeat. It was time to say my goodbyes to someone I have grown to love very much.

The service was a touching & hilarious look back at a man that will definitely live on in the many, many stories there are to tell about him. Through the magic of technology, Gord was able to watch the entire service from his bed at PMH - Lorraine skyped him on her iphone. As a friend of his said when I told him about it 'Of course! That's so Gord!'

A life with music is the best kind. Paul's 'after party' (what's that part called? the Wake?) was basically a band jam - filling the Optimist Club with music & I danced with Frances in my arms & so did practically everyone else in the room - she was SO! HAPPY! it was a great celebration of her Grandpa.

When my mom & I got back to Toronto, I went immediately to be with Gord. He's hanging in there - staying steady. There were times in the last month where I joked that if there was a split screen of both Paul & Gord, they'd be doing the *exact* same things at the *exact* same times. Gord is so much like his dad, I have been praying that he's got the same bouncebackability. Gordie's got a new energy in his voice this week & I have a feeling he's getting some help from his old man, coaching him from the sidelines.

Paul High.

2011-12-16T18:10:00.000-08:00

Gord's father passed away late last night.

We knew it was coming, but that doesn't make it any easier to say goodbye to such a great guy.

Paul with a 3 day old Frankie

2011-12-12T12:45:00.000-08:00

I guess nearly 24 straight hours of rest was what I needed. I started feeling better yesterday morning & was able to get back here to be with Gord by Monday mid-morning. I still feel a little queasy, so I'm not leaning in for any kisses, but I've pulled the chair right up close to the bed & we've lowered the side rail & it's almost *almost* like we're snuggled in together at home.

Except for the Constant Observer in the corner.
Gord has had a sitter in the room with him 24/7 since last Wednesday - someone to just keep watch over him, make sure things are okay.

He got doped up on some Benadryl this morning to prepare for his second dose of Campath - the GvHD fighting drug he gets once every 2 weeks. He has slept for most of the day, but it's a peaceful sleep - I turned on a buddha machine someone has left here and the sun is setting and it feels so nice here right now. Quiet & peaceful. I've spent a lot of the past week wondering what Gord is going through in his mind. Hopefully he'd think it was even a little funny that Lightfoot's 'If You Could Read My Mind' has been playing pretty much constantly in my head while I stare at him. Well, that and a medley of raffi songs. Frances was given her very first raffi CD a couple of weeks ago & of course she loves it. When I put it in the stereo, my eyes welled up. We've been her parents for a whole 8 months now & sure she is real & ours, but now that we have *baby music* it made it so much more real. While my eyes welled up, her eyes went directly to the turntable, wondering why it wasn't spinning around. She loves watching records play & gets confused by CDs. She's so much Gord + Me. It's mind boggling.
So while I sit in the room with Gord, I have 'We're Going to the Zoo!' on repeat in my head. 'You can come too, too, too.'

The Dr said Gord's Kidney & Liver numbers are still doing okay & that he's still holding his own. At this point, I will take any tiny improvement with absolute pleasure. One thing of note: turns out there was some mis-information on the weekend about what Gord can eat. A nurse mistakenly said he was on PD diet #3, but he is still on diet #1, which is still sugar-free juice & jello. Sad news for Gord since he asked me so nicely for a Coke & made such a sad face when he was told he couldn't have one. When this is over, I'll turn a blind eye to all the soda he wants to drink.

sick.

2011-12-10T20:09:00.001-08:00

I'm sick. I'm full blown throwing up, achy bones, exhausted sick.

I've spent the day sleeping at my parent's house while they take care of Frances. I hate that this is happening - I'll have to wait a full 24 hours after I don't have any symptoms before I can go back to visit Gord. This is killing me.
His mom went today & had only good things to report - speaking in full sentences to people, asking for candy (and was told he could have jellybeans cut in half), and was even given the go-ahead for plain mashed potatoes, which a friend hopped on the case of & made some for him. The next time we heard from Arlene, it was to say that she, too was sick & throwing up. I guess we got the same thing & the only person I can think of that we caught it from is about 18lbs, has blonde hair & blue eyes. Frankie is just coming out of being sick - my guess is that I caught it from her. I pray that I have not passed this onto Gord in some way.

On the bright side, I have slept for about 10 hours today & am just gearing up to go back to bed. This is the most sleep I've had in 8 months.

Punkstable McMailbox.

2011-12-09T12:38:00.001-08:00

Today has been a good day.

Since my last post, there's been such a wonderful outpouring of love & support to both Gord & I. In the last couple of days there has been a near constant stream of friends dropping by to give Gord their positive energies. And you know what? I think it's working.

The sign-in book at the nurse's station reads like the most popular kid in school's high school yearbook. Today several people came by just to give Gord their best & it obviously had a good effect on him. The confusion he was experiencing in the last few days seems to be lifting - he was with it enough to ask for a pen & paper & scratch out 'GET ME THE HEEELL OUT OF HERE! WE NEED A WHEELCHAIR!" Also overheard today was 'Punkstable McMailbox' which I think should be the name of his next music project.

Both his liver & kidney numbers have gone down a little & the transplant team have decided to put him back on anti-rejection meds (not the same one as before, but this is very good news). His diarrhea is lessening & he's not on nearly as many pain meds. All such wonderful news.

A note to those of you who may be thinking of visiting - Gord's immune system is *extremely* vulnerable at this time. If you are planning on seeing him, please be sure that you are absolutely, positively in tip-top shape. No colds, runny noses, sore throats. Our guy is working double-time to get better & is exhausted, follow his lead & visit accordingly & keep those good vibes coming.

sharp.

2011-12-07T14:14:00.001-08:00

If you know Gord personally, you know what a sharp tack he is, which is why it's so hard to see what's happening to him now.

Since Monday morning, he's become more & more confused. Muddy. His timelines are screwy, he's saying things that don't make a whole lot of sense & he just doesn't seem *here*. This morning they did a CT scan of his brain to see if the confusion was caused by his main anti-rejection medication. Apparently Cyclosporine can cause something called 'Press' (I think? I am zombie brain) which causes lots of confusion in some people. He was taken off it yesterday just in case. The Dr came to tell us that from what he can make out of the scan, the Cyclosporine isn't the cause of confusion. When I asked what it could be, he told me Gord's kidneys & liver aren't functioning properly (his creatine levels are starting to go way back up) which can cause brain confusion also, he's on very high doses of steroids, which could be the cause. When I asked if he'd be put back on the Cyclosporine, the answer was 'No, not right now.' I was also told that that's a big deal, since it's the main anti-rejection drug.

I think it's time to get pretty real about what's happening here. Gord has Stage 4 GvHD of the Gut & now the Liver. He's on everything that he can be on to try & get it under control. In short, like in the movies - 'They are doing everything they can.' Now, I've seen Gord bounce back from some pretty major stuff, so I'm not giving up hope, and neither are the Drs, and neither should you. But lets focus our good energies even more on Mr High, shall we?

2011-12-05T19:43:00.001-08:00

Gord's Liver numbers have been on the rise for the past while & starting to get into the 'danger zone'. The steroids & other drugs he's on, the nutrition that runs through the IV (TPN) & possible GvHD of the liver are possible reasons for the rise. On Friday the Dr told us he was going to stop the TPN to see if that made a difference in the numbers.
It didn't. They are continuing to rise. Like everything else, it seems like it's all about waiting. We just have to wait & see if the Campath is going to do its job. Guys? Waiting sucks!

I spent a long day at the hospital today. I've been going every day (except this past Saturday) and normally I just knit, read, or play a race car game on the ipad while he sleeps. Today I tried to be more present with him. While he slept I held his hand & just focused all of my thoughts & energy on him. On us. On everyone who knows & loves him of which I know there are plenty. I've been really amazed by the response this blog is getting - I can see by the stats tracker that people from all over the world are checking in for updates (amazing!). I started my craft blog 6 years ago & it has just over 6000 page views. I started this one 3 weeks ago and it has almost 2000 (and hey - don't be afraid to comment!). I mentioned this to Gord & he said "I'm a very popular guy...."

Gord is a very popular guy. His friend Chris came by tonight to visit. Gord was asleep for most of it, so Chris & I just talked quietly. My relationship with Gord is definitely stronger because of the cancer & the transplant - going through that kind of thing really makes a couple see what they're made of, but it has changed our dynamics quite a bit. Seeing your partner so sick - emptying their barf bowl, taking an active interest in the amount & consistency of their diarrhea, trying to maintain a normal tone of conversation while they're absolutely fucked up on massive amounts of Morphine can take away just a little bit of the romance between you. It can make that person way more of a 'patient' than a 'partner'. So tonight, Chris crouched down on the floor beside me & told me some stories about Gord. He told me about the first time he ever met him, about some highschool hijinx, about music making. I really needed to hear it all. I really needed to hear about Gord the artist, the music maker, the friend. I needed someone other than a Dr to talk to me about something other than Gord the Patient.

One of the things that amazes me about Gord is how many good friends he's had for a very, very long time. Most of his closest friends he's known since high school, and in some cases, like Chris - since grade school. Chris told me about the first time he met Gord - on the playground in 1980. He was wearing a worn in denim jacket with a bunch of pins on it. Punk at 8 years old.

honest.

2011-12-03T12:03:00.001-08:00

I'm not going to lie - today I've been fighting strong against the 'sadness current'. My mom went back to Hamilton last night so she could like...you know....do some of her own life stuff - not for long, she'll be back tomorrow. Today is the first day since Gord went into the hospital that I've just stayed home with Frances, by myself. We both needed it, I think. I've been smushing my face into the crook of her neck as often as she'll let me & enjoying her new desire to try and crawl/climb onto me. Thank God for Frances.

This is what every day should be like. And Gord should be here to enjoy it as well. And I can't help myself from thinking about it. During her morning nap, I could hear the couple downstairs playing with their baby who is about 3 months older than our girl. I hate to say it, but I got jealous.

Cancer is hard enough to deal with - the diagnosis, the treatment, the clinic visits, the feeling crappy, the putting on a brave face, for me, the watching someone I love so very much fight for so long & so hard just to *live*, just so that he can have a simple, happy life is so hard to deal with. What a lot of people don't think about is the simple pleasures this illness steals away from those affected. Today I am *angry* that this ugly thing came into our lives & landed us where we are now. Today I am resentful that the three of us are not hanging out together.

My sister called me in the midst of all of these feelings & the conversation started like every one does:
"Hi! How are you?"
"Fine! How are you?"
Right after I said it, I retracted. "You know, no...I'm not fine. I just automatically answered that I was because that's what I do. I'm sad today. I'm really trying not to be, but I am."

Turned out that just saying that to someone, and talking about it, and having that person listen to me & love me was what I needed. I felt loads better after just admitting that I wasn't 'fine' and having someone tell me it was okay was exactly what I needed. Still feel this heaviness, of course, but I am trying to focus on the big picture.

GvHD vs. GPH

2011-11-29T19:35:00.001-08:00

I walked into Gord's room to find him sitting at the edge of the bed. Two Physiotherapists stood on either side of him, showing him some leg & arm exercises he can do to keep things moving. He's been in bed for 2 weeks now.

Gord's always been a strong, active guy. When we met we'd walk everywhere - long walks where we talked lots & found out about each other. When the weather turned nicer the walks turned into bicycle rides (that's when I learned he is a leader, not a follower). The first summer we were together we decided to go camping one long weekend in Tobermory. The camp site was incredibly remote as it was along the Bruce Trail. When Gord called to reserve our site, he was told that the trail to get there was 'somewhat challenging'. We paid no mind - "We walk all the time!" And we loaded up our backpacks (like really, really loaded them up) and set off. It was indeed very difficult but just when I was about to complain, Gord would point out something totally awesome & I would shut my mouth. I fell big time in love with him on that trip.

When he was diagnosed with ALL in 2007, I remember just staring at him, wondering how it was possible that he was so sick. He looked so strong. So healthy.

Today I saw that strength. He is still exhausted, and yes, for the most part very weak, but his determination cannot be dampened.

They started him on Campath yesterday & we were told that it would take about 7 days to see if it was going to be an effective way to deal with his GvHD. The Dr told us to mentally prepare for Gord to be in the hospital for at least another 4-6 weeks. This means we'll have to figure something out for Christmas, but honestly I knew this one would be a long stay. I was already prepared for it.

My mom's still here with me to look after Frankie during the day so I can be at the hospital. Frankie is such a doll - such a joy to come home to - she fills this apartment with so much light.

slow going.

2011-11-26T17:00:00.001-08:00

There are very small improvements day by day - the Dr said it was good, better than his condition worsening & that they'll take any little bits of progress they can get.

His diarrhea is still a big problem. Luckily, the amount seems to be lessening. They will keep on with the steroid combo they're currently giving him and if in a couple of days things don't improve further, they will proceed with something called Campath which, we've been told, is very effective as a way of treating Graft vs Host, but comes with it's own serious side effects & risks - the big one being that it will make Gord even *more* susceptible to serious infection.

He's still very weak - physiotherapy comes to do some exercises with him but he has not been out of bed for about a week and a half now. He gets all of his nutrition from a fancy bag of... I don't know what - it's just referred to as 'nutrition' and runs through his IV. He sleeps for most of the time that I'm there with him (I visit from around 10-5, usually). The past couple of days he has been a little bit chatty for short periods of time, usually talking about food. Doubles, bagels, pizza, California sandwiches, Niagara fruit. When he waxes poetic about this stuff is when I know he is still Gord - my Gord, *our* Gord.

clerical error.

2011-11-22T19:18:00.001-08:00

Last November I was about 4 months pregnant. One night I got a call from my Dr's office - my screening tests came back as 'positive negative' which meant that the baby had a higher risk of being born with an 'abnormality'. I was already scheduled for my 20 week ultrasound the next week & they arranged to have us meet with a genetic councilor at that time. The 4 days between that phone call & the ultrasound were tough. Gord & I had long conversations about what we'd do. Our answer was of course that we'd love that baby like crazy regardless. I was so proud of us & how we handled everything. I was upset only by the thought of our baby possibly having to suffer - and when I cried, Gord held me close. I thanked him so much for being my partner & I'll never forget what he said to me: "3 years ago I was falling, and you held me up. Now's my chance to do it for you."

The day of the scan I was a bundle of nerves - the tech never once turned the screen towards me, but Gord watched our little nubbin swim around. I made him re-enact her (!!!we found out it was a girl!!) movements for me several times for days afterwards. "Show me how her arms were moving!" and he'd flail them up above his head.

When the scan was finished & we were waiting to be seen by the genetic councilor, the ultrasound tech came out & asked if what was written on my forms was my correct weight: 110lbs. "Yes, that's my weight -- in KILOS" I said. "Well now, this is going to change things!" and she marched away. (1 kilo = 2.2lbs... you see where they went wrong there?)

Change things it did - it made my ratio go from something like 1:42 to 1:2000. In other words, the chances of our baby being born anything other than perfect were very, very slim.

It was a clerical error. Just like that. All of our worries got eaten by the universe never to be worried about again and 4 months later perfect little Frances made her big debut.

I've been thinking a lot about that this past week - and about how I really wish this was all a clerical error & someone would apologize for putting us through all of this worry for nothing & we're free to go on our way....happily ever after

diarrhea diet

2011-11-21T20:14:00.001-08:00

He gets this for breakfast, lunch and dinner.

They're sending a scope down in his gut to check out what's what. Hopefully they can get this thing under control.

reeeeeemix.

2011-11-20T16:42:00.001-08:00

"Mr High, did they get a sputum sample from you?" The nurse asks.
"Oh yes" says Gord, "They got samples of everything. They got so many samples from me they could make a remix."
Badum-chum!
Folks, he's still hilarious.

Gord is tucked nice & cozy at PMH. He's making little bits of progress - his kidneys are working (thankyouthankyouthankyou), he hasn't vomited in days, his blood pressure is nice & normal, his heart rate is good.

One of the transplant Drs came by today & told us that his blood cultures showed that he had 'picked up 2 bugs' - he didn't say what they were, only that they'd give him more antibiotics to help get rid of them. This really emphasizes how vulnerable Gord is to illness post-transplant. In the week and a half that he was home he only left the apartment to go to clinic (which was twice a week) he still managed to pick up 2 different bugs.

He's still pretty weak & tired and his diarrhea is next on the 'to fix' list, but he's feeling a little bit better day by day. As one nurse put it: 'This is transplant'.

mega bump

2011-11-18T07:36:00.001-08:00

The bump in the road is turning out to be one of those big rollercoaster type loops. The kind that make your stomach drop then feel like it's way up in your throat & then finally it settles back down to where it's supposed to be but it will be a while before you feel *right* again.

Last night Gord was transferred from The General to PMH - about 15 minutes after we got there, he was feeling dizzy. The nurse tried to get a Blood Pressure reading on him but couldn't - so another nurse was callled....and then another... and another... and another... and medics on call & soon it was a flurry of activity in his room & me standing outside just watching. About 4 doctors and 6+ nurses & the mobile ACCESS team from the Mount Sinai ICU all in there, working to make him better.

All I could do was stand outside, watching. Some angel of a nurse stood beside me the whole time, explaining everything that was going on, telling me it was going to be okay. It took what felt like forever, but they eventually motioned for me to come in & be with him. He was bundled up much like Frankie was when she was new - just his head poking out from a cocoon of flannel blankets.

So what happened? His blood pressure was very, very low. His heart rate was very, very high. He was severely dehydrated, he had virtually no electrolytes and his kidneys weren't functioning properly. They literally dumped 5 bags of saline into him (through his hickman & then through an IV they put in his arm). They didn't even run it through the IV pump - it just poured right into him. They took more vials & bottles of blood from him than I thought he could even fill (really - when they walked out with them all I wondered if he had any blood left in his body) to check for any possible infection.

I called my mom (who is still helping out to the max with Frankie) to give her the update & she said she'd call my dad to come & be with me. Gord's mom, sister & brother in-law also came. Today I realized - you don't know what you need until it's forced on you.

They kept a close watch on him & did more bloodwork to check on his kidney function and finally, they made the decision that he should be moved to the ICU at Mount Sinai - they would continue with the hydration, but if his kidneys did not respond positively to it, then they would go ahead with dialysis. Gord was awake & fairly aware of what was going on - aware enough to comment that he was happy to go there, since their food is pretty good.

We stuck around until we were sure he was fairly stable & comfortable and then it was a slumber party over at my house. I bunked in the nursery with Frankie - not really sleeping... just listening to the tiny sounds she makes as she sleeps & focusing all of my energy on trying to relax & remembering what Gord & I have been sticking to since his relapse in February: Let go, Let God. Whatever is coming is coming regardless - we have to stay close, stay strong, stay ready & stay ever hopeful.

Arlene, Lorraine & I went to visit this afternoon. I walked in on Gord, happily eating his lunch of fresh fruit. "I love fresh fruit. This is beautiful. My eyes lit up as soon as I saw it come in the room." And my eyes lit up watching him eat - it'd been over a week of hardly any eating. Melon to the rescue!
His BP is a tiny bit low, but good - his HR is good, his creatine levels have come down slightly. He is incredibly exhausted but I'd say he's in this game for a while longer yet.

Day +33

2011-11-16T17:10:00.001-08:00

The past couple of days have been real tough.

Turns out that dehydration was only part of the problem.
Gord's GvHD of the gut is proving to be mighty stubborn. They're giving him a different kind of steroid through IV now - they will wait to see if things improve over the next 2 days & if not, then what we're dealing with is called 'steroid refractory' GvHD & has to be dealt with in a more aggressive way. I'm not going to start worrying about that until it's an actual *thing* though. He's in the General now but will be transferred to PMH tomorrow, hopefully. I'll feel so much better when he's there.

He's weak & tired & vomiting & has terrible diarrhea but thank god he still has his sense of humour which shines through at the exact right times.

My mom is staying with me, minding little Frankie so that I can be with Gord - I really have no idea what I'd do without her here. I was starting to feel like I was just dangling out in the middle of nowhere.

I've seen Gord get through some really hairy situations over the last 4 years, so I am holding onto the fact that genetically, he is made up of like, 80% rubber.

new digs.

2011-11-15T17:56:00.001-08:00

Hello!

I've decided to keep the crafts separate from the 'other stuff' that's going on. I don't want to alienate anyone who may be coming to Heyawesome! to check out my knitting projects by getting all heavy about what's going on in my personal life. Also, I don't want those of you who are more interested in knowing what's going on with us personally to have to sift through posts about stuff I glued or sewed to other stuff.

So here then, is 'caregiv'r' - where I will attempt to be a little more 'real' and honest with what it's like to be me.