Monday, December 5, 2011

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.


  1. Hi Nicole!!
    I wasn't sure I could comment on your new blog, until you wrote it - Guess it wasn't totally obvious that all I had to do was click on the word comments - duh!!
    Thanks for sharing your experiences - I know that it is very difficult to do, but I believe writing is a help to you and here is just another message back to Gord to say, keep fighting as you have 2 beautiful girls waiting to play with you!!! And hopefully that is what you can focus on too, Nicole. Soon he will be well & then you, he and Frankie can be off galavanting everywhere. In the nicer weather - it's too cold out right now anyways - so use the time to get well now!!
    Sending LOTS of positive thoughts & energy your way!

  2. I'm one of the people reading from overseas (and a lurking glitterati)! So I thought I'd say hi. I am sending all of my best wishes and good thoughts from England, and hoping hard that those liver numbers start to co-operate. Look after yourself too x

  3. Hi Nicole, I think you know we think of you guys everyday. If you like I could come keep you company at the hospital one day. I'ts always nice when someone shows up with coffee or tea, just gives you some diversion.
    Meanwhile, Gord's at least not missing out on great weather. He's warm and well cared for while he fights this through.
    xx and thanks for writing, it helps so many through this with you..

  4. Another G* person here. I think about you guys every day and send my good energy. <3

  5. Hi Nicole,
    Thanks for the updates. I'm thinking about you guys. Please tell Gord I say hello. And if you need some help with Frankie , some books to read, some cookies or something else please call or email.

  6. Hi Nicole,
    I think of you guys every day. I hope you find writing your blog therapeutic in some way, it's a great outlet. I'm very grateful to read the updates- I'm praying for all of you and sending my most positive thoughts to you and Gord and Frankie.
    If I can ever do anything to support you please let me know.

  7. Nicole, I'm thinking of you and Gord so much. This post hit home, I love thinking of him as a punk at age 8! It's so nice that you get to hear these stories from his friends, and share things that have happened between you two as well. Just wait for when he's more coherent and you can say, "I can't believe you never told me about the time..."
    Lots of love and hugs,

  8. Dear Nicole and all of Gord's family,

    I am a friend of Gord's mom & dad. Along with myself, my husband, my mother and a couple of my siblings, we are reading your updates daily. With the prayers from all of us, along with so many others, we are putting all our energy in the hopes that Gord will pull through this hurdle and be home with you and Frankie soon. It not only is tough at this time of year but what you are enduring with Gord alone and then with Gord's Dad now in Hospice, you need all the support we can give you. Stay strong, we are thinking of you all! Take care of yourself, lots of hugs, Judy H. from Fonthill.