good.

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.

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.

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.

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

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.

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.

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.

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?

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.

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.