Happy Halloween...
Sunday, October 31, 2010
Friday, October 29, 2010
Friday, October 29
Hi Friends,
Our friend Judy Garber sent us this card this week from Edmonton and it made us all laugh. Catherine suggested that it was the three of us coming back from chemo - Catherine is in the back, Julie is driving, and the really smiley one in the front is me. Um, not an entirely accurate representation of us perhaps on chemo day but hey, we can all hope!
Thanks, Judy.
Love,
Kip
Thursday, October 28, 2010
Queen's Support
Dear Friends,
This afternoon Sheri sent me photos from the "Queen's Wears Pink" initiative on campus. The School of Music was very involved in the project, evidenced by two photos above. The first is of the Queen's Brass Quintet (a group close to my heart, with instructor Chantal Brunette on the left), and the bottom photo is of a few of my colleagues in the department, from left to right, Kim Ison, Sheri Wilson, Shirley Roth and Margaret Walker. Many thanks to everyone who participated and kept Karen Frederickson and myself in mind.
Today was a better day for me with less pain. My project these days--and it's good to have projects--is to figure out how to take a happy bath. One of the precautions with Taxol is not to soak your nails in water because that can make them crack and break off. I remember going to chemo camp with Catherine and Julie in August and the pharmacist telling us that nails breaking off was a possible side effect of chemo. I believe all three sets of our eyebrows went up simultaneously.
Eew.
When I first started chemo I was taking showers but then I started getting water stuck in my right ear which doesn't clear for a few days. The oncologist has no explanation for this. Then came earplugs which didn't fully do the trick, then earplugs and a rain hat. Then showers were simply no fun at all. I then switched to baths, which, over the last few weeks, became a nice part of my my day. Now with the "nail issue," we have rigged a way to keep my toes out of the water by placing a container under my feet, and Catherine bought me a box of medical gloves for my hands. I look slightly ridiculous, it's not entirely satisfying, but it does the trick.
When I'm done with all of this crap, I'm bringing a bottle of Chateauneuf du Pape in with me for the hottest, longest bath party, accompanied by Shannon's bath salts, Walter's poetry, and Paul's playlist.
All are welcome (well, you know what I mean).
Love,
Kip
Tuesday, October 26, 2010
Tuesday, October 26
Dear Friends,
I had a better day today. I am in less pain and I am now off the Tylenol 3's and down to extra strength Tylenol. Because this is the first round with the Taxol, I'm not sure what the next few weeks look like, but I'm hoping that there will be a few good days before I go to the next round.
An important and unexpected benefit of this blog is that it gives relief from the isolation of chemo. This isolation isn't just physical (I don't go out to public places) but also social and even spiritual. I have found myself looking for some version of what I am experiencing to help with that isolation. One of the things Arthur Frank says in his book 'At the Will of the Body,' is that his readers have let him know that he puts into words what they have not yet been able to articulate. I have certainly found this reading his book. Being able to put down some of my experiences here gives me a little distance from their immediacy. This gives me more of a buffer and that helps me cope.
I have grappled with writing about what has been hard through this because I don't want it to be difficult for people to read. Chemo is pretty hidden; at least I haven't found many representations of it that strike me as like my experience. Medicine, Hollywood and Races for the Cure all seem to indicate that the major problems with chemo are fatigue and hair loss (as Frank says, chemo seems to be a problem of grooming rather than a deep spiritual crisis). I have found it much more intense than I was led to believe, and this increases my sense of isolation. At the same time that I want to protect people from what is hard for me, I also want to be honest about what I'm going through.
As Catherine was reading Arthur Frank to me last night, I was struck by a citation he used of Joseph Campbell who said 'If you're falling, dive'. I have been so moved that you have stood with me as I fall and dive too. You provide lyrics and photos and videos and humor so I can dive with more courage. I am very grateful for all of you.
Love,
Kip
I had a better day today. I am in less pain and I am now off the Tylenol 3's and down to extra strength Tylenol. Because this is the first round with the Taxol, I'm not sure what the next few weeks look like, but I'm hoping that there will be a few good days before I go to the next round.
An important and unexpected benefit of this blog is that it gives relief from the isolation of chemo. This isolation isn't just physical (I don't go out to public places) but also social and even spiritual. I have found myself looking for some version of what I am experiencing to help with that isolation. One of the things Arthur Frank says in his book 'At the Will of the Body,' is that his readers have let him know that he puts into words what they have not yet been able to articulate. I have certainly found this reading his book. Being able to put down some of my experiences here gives me a little distance from their immediacy. This gives me more of a buffer and that helps me cope.
I have grappled with writing about what has been hard through this because I don't want it to be difficult for people to read. Chemo is pretty hidden; at least I haven't found many representations of it that strike me as like my experience. Medicine, Hollywood and Races for the Cure all seem to indicate that the major problems with chemo are fatigue and hair loss (as Frank says, chemo seems to be a problem of grooming rather than a deep spiritual crisis). I have found it much more intense than I was led to believe, and this increases my sense of isolation. At the same time that I want to protect people from what is hard for me, I also want to be honest about what I'm going through.
As Catherine was reading Arthur Frank to me last night, I was struck by a citation he used of Joseph Campbell who said 'If you're falling, dive'. I have been so moved that you have stood with me as I fall and dive too. You provide lyrics and photos and videos and humor so I can dive with more courage. I am very grateful for all of you.
Love,
Kip
Monday, October 25, 2010
Monday, Oct. 25, election day
Dear Friends,
Kip had another day of fighting relatively intense pain. We goofed off, watching 4 hours of Coronation Street, getting out of our pyjamas after 4 p.m. As it turns out, it was a good day to bury our heads in the sand, given the results of the mayoral race here.
Kip is now on Tylenol 3's, and we hope for a day of less pain tomorrow. Kip did sleep relatively well last night, and I hope for another good night. Today, I'm struggling with feeling like I can't make the pain go away. Somehow it's different than nausea, I'm not sure why. Of course, both insistent pain and insistent nausea erode you; maybe it's just that pain is the new (and unwelcome) kid on the block.
Thank you to all of you,
Catherine
Kip had another day of fighting relatively intense pain. We goofed off, watching 4 hours of Coronation Street, getting out of our pyjamas after 4 p.m. As it turns out, it was a good day to bury our heads in the sand, given the results of the mayoral race here.
Kip is now on Tylenol 3's, and we hope for a day of less pain tomorrow. Kip did sleep relatively well last night, and I hope for another good night. Today, I'm struggling with feeling like I can't make the pain go away. Somehow it's different than nausea, I'm not sure why. Of course, both insistent pain and insistent nausea erode you; maybe it's just that pain is the new (and unwelcome) kid on the block.
Thank you to all of you,
Catherine
Sunday, October 24, 2010
Sunday, October 24
Dear Friends,
Today, Kip has struggled with pain, sometimes dull and aching, sometimes a bit more ferocious. So we will learn about managing it. This is likely due to the combination of the joint and muscle pain caused by the Taxol, and the bone pain caused by the growth hormone. Kip took a T-3 and that helps, but it has its own effects....
Julie Salverson came by this afternoon with treats and conversation. It was a spectacular day here, the air soft and warm, the sky grey. Kip got out for a bit of a walk, and I got out for a run and found the trails by the Humber River!
We started watching The Wire. Four episodes in and the three of us are intrigued. A bag of other movies and tv shows arrived from Julie's friend Rose, so we will have to figure out how to stretch at the same time we watch so our bum prints aren't permanently etched on the couch!
Again, thanks to all for your humour, love, etc. Immovane (or, the magic blue pill), is a wonderful thing, and I have a good hunch it will take Kip down into a land of dreamless, painless rest.
Love,
Catherine (and Kip)
Today, Kip has struggled with pain, sometimes dull and aching, sometimes a bit more ferocious. So we will learn about managing it. This is likely due to the combination of the joint and muscle pain caused by the Taxol, and the bone pain caused by the growth hormone. Kip took a T-3 and that helps, but it has its own effects....
Julie Salverson came by this afternoon with treats and conversation. It was a spectacular day here, the air soft and warm, the sky grey. Kip got out for a bit of a walk, and I got out for a run and found the trails by the Humber River!
We started watching The Wire. Four episodes in and the three of us are intrigued. A bag of other movies and tv shows arrived from Julie's friend Rose, so we will have to figure out how to stretch at the same time we watch so our bum prints aren't permanently etched on the couch!
Again, thanks to all for your humour, love, etc. Immovane (or, the magic blue pill), is a wonderful thing, and I have a good hunch it will take Kip down into a land of dreamless, painless rest.
Love,
Catherine (and Kip)
Saturday, October 23, 2010
I Want Yew To Want Me...
I need yew to need me,
I'd love yew to love me,
I'm beggin' yew to beg me...
Hi Friends,
Well, Thursday was quite the day. It was much longer than I anticipated, but we got through it. Julie dropped Catherine and I off at about 8:30, and they took us in by 9:15 (which was great). There were a few anti-nausea and anti-rejection drugs first, and they took about two hours to infuse. I had a hard time with one of them, it felt horribly toxic in my arm and then my arm went cold so Catherine got the nurse to make sure all was ok. It was. One of the drugs they use is Benadryl which helps prevent a histamine reaction. It also made me really dopey. Then they started the Taxol infusion. I could feel myself fading in and out, not sleep exactly, but pretty drugged. During one of my fade outs, I started hearing Cheap Trick's song "I Want You to Want Me" in my head, but imagined the spelling as "Yew." I was singing the song in my head, kind of amused at this, wanting the yew to be ok, wanting it to want me. (For those who missed the post earlier this week, Taxol is derived from the yew tree.) This song makes so much less sense now but in the drug-induced moment it was perfectly clear. I told Catherine about it and the two of us sang it quietly together during the drip. It was one of the sweet moments of the day. The Taxol took longer than normal because the first time through they have to graduate the dose. They first administer about a teaspoon an hour and watch you carefully, then they increase. I'm glad that's the protocol - a woman a few beds down had a reaction to the Taxol. I couldn't see her, but it didn't sound pretty. We left about 7 hours after we arrived, and I was done in, to say the least.
The nausea was rough the first day, but it has settled pretty well. Now it's dealing with joint and bone pain which is significant and will worsen tomorrow with the growth hormone. I'm saving the codeine in case I need it then.
I just heard from my cousin Ellen's husband, Gary. She had her surgery yesterday for ovarian cancer and all went well.
Above is a photo Jules took this afternoon of me beside the tree outside the house. The leaves on the tree are still pretty green, but those on the ground reveal its fall colours.
Much love,
Kip
Subscribe to:
Posts (Atom)