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

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

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)

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

Chemo 5

Dear Friends,
Catherine here. We are home from a long day at chemo daycare. First day of Taxol. On the face of it, all good, no allergic reaction, which is something they worry about and give pre-meds to avert. Kip is very very tired, feeling toxic and fragile. Nausea is up, but this may be some trauma from the day. She is dozy in bed now, and I hope tomorrow will be feeling better. What to look for with taxol: some peripheral neuropathy (tingling and or numbness in fingers and toes, in extremities), joint pain (to join the bone pain from tomorrows shot), more fatigue. So we will see how this next cycle comes, one breath, one hour, one day at a time.

Thanks for all of your love, emails, mail, calls, blog-reading and sharing. There was no Harry Potter today, Kip felt too crappy. But there are weeks to come.

Love to all,
Catherine

Addendum: Kip is feeling a little better: when I went to see if she could eat anything, she quipped oh, it must be the second seating on the nausea cruise.

A good sign.
xx

Wednesday, October 20

Hi Friends,
Tomorrow is the next round and so I'll sign off for a few days. Thanks to Julie for taking this photo of Catherine and I (in a stained glass effect) down at the butterfly garden.
With much love,
Kip

Shrinkage R Us

Hi Everyone,

We had a good day at the hospital. After blood work was finished, we went up to see the oncologist. First, however, we met with the oncologist's medical student, a very sweet and shy young man. He asked about the last few weeks and how things were going. Catherine mentioned a few of the drugs I have tried, what worked, what didn't, and we simultaneously recognized the look on his face. She was talking way over his head. She talked, he smiled. She stopped talking. (Now imagine the sound of crickets.)
Then came the exam. As I sat on the table in my lovely blue hospital gown (now, you have to imagine that with my black toque, my sunglasses and my leather jacket, I fancied myself arriving looking like an assassin - a look utterly ruined by the gown), he commented that the oncologist gave him a measuring tape but he didn't know why. Catherine filled him in. "Um, to measure the tumor." "What?" he replied. "To do what?" I have a mental snapshot of him looking at her in total disbelief and shock, an image I may have for my entire life. It is kind of incredible that with all of the technology, the machines, the complex procedures and the drugs, they still measure some tumors using a sewing tape measure. He tripped all over himself, and left to get the oncologist. Dr. Bedard took a measure and confirmed that Tito was now smaller, and I was doing great. The exam under my arm was still painful, but that could either be from swelling from the cancer or even scar tissue, and they won't know which until surgery. We then tried to help the medical student do an exam. I was highly directive because he was so tentative. Bossy even. Bedard asked if I wanted a job as practice patient for med students. Thank you, no.
My blood counts were still low, but they should be ok by Thursday, so we will go ahead with the chemo. It's an early appointment, starting at 8:30, so with the usual delays, I hope to be in by 10:30, then it's a three-hour procedure. Harry Potter is ready to go.
Love,
Kip