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
Thursday, October 21, 2010
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
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, 2010
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
Tuesday, October 19, 2010
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
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
Monday, October 18, 2010
Monday, October 18
Hi Everyone,
After a weekend with very low blood pressure, it's clearly coming back today. My headaches are going away and I have more energy. I'm concerned that my blood level counts drop a little each round (this is to be expected), and I'm hoping that I have enough to pass the blood test tomorrow and continue with chemo on Thursday. Dr. Adams and Dr. MacDonald came by yesterday for a visit with lovely cupcakes and scones in hand--I just finished the last delicious cupcake, the best I've ever tasted--so I'm sure my blood sugar levels are doing just fine. Maybe that will get me through.
Tonight, Maria Montini, Julie's friend and colleague (and now my friend too) came over to deliver the best minestrone soup to be found anywhere (photo above). I'm now eating everything with no nausea, and this addictive delicacy, which we affectionately call "crack soup," is like heaven in a bowl.
On my good days of this treatment, I have appreciated food like never before. Thank you to everyone who has brought culinary gifts for us to enjoy.
Love,
Kip
Saturday, October 16, 2010
Never, ever search online...
Hi Everyone,
Context:
1) Catherine is in Cobourg this weekend spending time with her Mom.
2) I made the (stupid) mistake of getting online to search Taxol, the new chemo drug I'll be starting this week. I learned that in 1960, the National Cancer Institute and the US Department of Agriculture began to screen plants for anti-cancer properties. Taxol is part of a family of drugs derived from the bark and needles of yew trees that has proven effective, especially in cases of ovarian cancer. (Can you imagine being a fly on the wall when the first researcher said "hmmm, let's try injecting some yew sap and see what goes"?). I was heartened by this first paragraph because I could visualize my body working with a plant derivative in fighting my cancer.
Then I read the second paragraph.
Apparently, because the liquid is thick and sticky, it needs to be pumped into the body. It is also an irritant, so the nurses need to watch carefully to make sure the vein doesn't lose its integrity. Whatever that means. Don't want to know.
Accordingly, last night's dream: I'm in the chemo day care and a team of nurses are searching for a viable vein in my right arm. (Because the cancer is on the left side, they must always use my right arm for chemo injections. That way if I develop an infection, it's further away from the cancer site and won't further complicate the tumor area. They also wrap up the arm with an electric blanket first in order to "plump up" the veins (the nurse's words) prior to injections. I'm sorry, but "plump up" and "veins" should never be used in the same sentence.) In the dream they can't find a vein, and I'm secretly happy because I don't want an irritating sap injected into me. When I awoke, I was stretched out with my right arm hiding in Catherine's pillowcase right at the corner of the bed, out of the nurses' sight. Clever unconscious.
I promised Catherine and Julie I won't go online anymore.
Thanks for your continued posts, they make me smile and laugh and cry and feel held and supported. It feels great to be out of chemo pms and back to more normal emotions.
And the Leafs are 4 and 0.
Miracles never cease.
Much love,
Kip
Context:
1) Catherine is in Cobourg this weekend spending time with her Mom.
2) I made the (stupid) mistake of getting online to search Taxol, the new chemo drug I'll be starting this week. I learned that in 1960, the National Cancer Institute and the US Department of Agriculture began to screen plants for anti-cancer properties. Taxol is part of a family of drugs derived from the bark and needles of yew trees that has proven effective, especially in cases of ovarian cancer. (Can you imagine being a fly on the wall when the first researcher said "hmmm, let's try injecting some yew sap and see what goes"?). I was heartened by this first paragraph because I could visualize my body working with a plant derivative in fighting my cancer.
Then I read the second paragraph.
Apparently, because the liquid is thick and sticky, it needs to be pumped into the body. It is also an irritant, so the nurses need to watch carefully to make sure the vein doesn't lose its integrity. Whatever that means. Don't want to know.
Accordingly, last night's dream: I'm in the chemo day care and a team of nurses are searching for a viable vein in my right arm. (Because the cancer is on the left side, they must always use my right arm for chemo injections. That way if I develop an infection, it's further away from the cancer site and won't further complicate the tumor area. They also wrap up the arm with an electric blanket first in order to "plump up" the veins (the nurse's words) prior to injections. I'm sorry, but "plump up" and "veins" should never be used in the same sentence.) In the dream they can't find a vein, and I'm secretly happy because I don't want an irritating sap injected into me. When I awoke, I was stretched out with my right arm hiding in Catherine's pillowcase right at the corner of the bed, out of the nurses' sight. Clever unconscious.
I promised Catherine and Julie I won't go online anymore.
Thanks for your continued posts, they make me smile and laugh and cry and feel held and supported. It feels great to be out of chemo pms and back to more normal emotions.
And the Leafs are 4 and 0.
Miracles never cease.
Much love,
Kip
Thursday, October 14, 2010
Thursday, October 14
Dear Friends,
Today, my dear friend Walter came from Kingston for a visit with Catherine and myself. We talked about time, how to be present to oneself in the midst of illness, how to be still. After a few hours, I got tired and had to sleep, so Walter brought out his guitar and played me Cat Stevens as I began to nod off.
It was interesting to see myself through Walter's eyes today. I hadn't seen him since mid August, and now I feel like such a different person. Depleted, old. I thought today of a story about Freddie Mercury, just before he died: a friend came over to spend a few hours with him and as she left he said "thanks for spending time with an old man." Today, with the fatigue and other side effects, including my capped head, I felt like he was looking at an old person on the couch. Clearly I'm entering a new phase with the treatment, and with fewer reserves. It is now feeling like it is no longer my body, I don't recognize it anymore. I must remember that I will again, and that will be a glorious day.
I just learned that my friend and colleague in the School of Music, Karen Frederickson, will be starting chemo on October 29. She will have six treatments over the next few months.
Damn.
Much love,
Kip
Today, my dear friend Walter came from Kingston for a visit with Catherine and myself. We talked about time, how to be present to oneself in the midst of illness, how to be still. After a few hours, I got tired and had to sleep, so Walter brought out his guitar and played me Cat Stevens as I began to nod off.
It was interesting to see myself through Walter's eyes today. I hadn't seen him since mid August, and now I feel like such a different person. Depleted, old. I thought today of a story about Freddie Mercury, just before he died: a friend came over to spend a few hours with him and as she left he said "thanks for spending time with an old man." Today, with the fatigue and other side effects, including my capped head, I felt like he was looking at an old person on the couch. Clearly I'm entering a new phase with the treatment, and with fewer reserves. It is now feeling like it is no longer my body, I don't recognize it anymore. I must remember that I will again, and that will be a glorious day.
I just learned that my friend and colleague in the School of Music, Karen Frederickson, will be starting chemo on October 29. She will have six treatments over the next few months.
Damn.
Much love,
Kip
Wednesday, October 13, 2010
Wednesday, October 13
Dear Friends,
I'm sitting on my couch this morning watching the Chilean miners emerge one by one. The mine collapsed on August 5, one day after my diagnosis, and originally it was estimated that they would be trapped for four months. I remember thinking shortly thereafter that they would be rescued at about the same time I finished chemo and I was sending them mental energy to help them get through it. I've been following their progress these last few months and am really thrilled to see them rise to safety almost two months early.
I'm just heading into day 7, and (thankfully) am leaving what we have been calling "chemo pms." There's no other way to describe it, I experience incredibly heightened emotions for two days just before my blood levels drop. It happens every two weeks, so at least we know it's coming and can buy enough Haagen Dazs to keep me stable.
As part of this pms, I've really been missing my friend Sharon Rosenberg a lot these past few days. Sharon died of cancer at the end of July, and I'm not yet used to the idea that she is really gone. That is really sinking in this week.
The miners are slowly getting liberated and I'm going to walk past my Anne Frank tree to see what lies beyond today.
Much love,
Kip
I'm sitting on my couch this morning watching the Chilean miners emerge one by one. The mine collapsed on August 5, one day after my diagnosis, and originally it was estimated that they would be trapped for four months. I remember thinking shortly thereafter that they would be rescued at about the same time I finished chemo and I was sending them mental energy to help them get through it. I've been following their progress these last few months and am really thrilled to see them rise to safety almost two months early.
I'm just heading into day 7, and (thankfully) am leaving what we have been calling "chemo pms." There's no other way to describe it, I experience incredibly heightened emotions for two days just before my blood levels drop. It happens every two weeks, so at least we know it's coming and can buy enough Haagen Dazs to keep me stable.
As part of this pms, I've really been missing my friend Sharon Rosenberg a lot these past few days. Sharon died of cancer at the end of July, and I'm not yet used to the idea that she is really gone. That is really sinking in this week.
The miners are slowly getting liberated and I'm going to walk past my Anne Frank tree to see what lies beyond today.
Much love,
Kip
Monday, October 11, 2010
Saturday, October 9, 2010
Saturday, October 9
Dear Friends,
Today I finished the very powerful anti-nausea drug called Emend. There are only three pills in each package, one for the first three days of chemotherapy. I was prescribed four packages to get me through this first half of the treatment. The picture is of me throwing out the last of the packages--as of today, I'm finished with it. I'm grateful to have had it, and I know it saved my skin. The night before my first chemo treatment, Catherine, Julie and I watched an episode of "Nurse Jackie" (a wonderful show if you haven't seen it). One of the storylines on that particular episode was of a man going through chemo who arrives at the emergency room incredibly sick. He hadn't been prescribed the appropriate drugs. The doctor on call sent him home with Emend and he was considerably better. I remember walking into my room after the episode and doing a quiet meditation with my first package of Emend, visualizing it keeping my body together (Jon Kabat-Zinn teaches medicine meditations which are quite helpful, especially during chemo when there are so many nasty medications. His meditations helps you make friends with the drugs, to tap into their healing potential). The Emend did keep me together, and I'm grateful, and now really happy to be done with it.
Despite this praise, it was still a day with lots of nausea. I ranked it around a 4 out of 10, but Catherine thinks I'm under reporting. Perhaps I am. Apparently, my superego won't allow me to go over a 5 without *very* good reason. OK, I'm at a 5 (but I bet I'll be below a 4 by morning...)
Much love,
Kip
Friday, October 8, 2010
Friday, October 8
Dear Friends,
I'm back. Today I struggled with some nausea on and off for the day and had pretty low energy. The latter can also be caused by my ongoing low blood pressure (94/50 as taken by the nurse today). She gave me the hormone shot again, and, as I write, my freaky nails continue to grow. I just cut them four days ago and already I can hear then clicking against my keyboard. Perhaps I will let one grow just to see what it looks like by Halloween.
Yesterday, as we waited for chemo, we started reading Arthur Frank' book "At the Will of the Body" (thanks to Mary Louise for the suggestion). He is a sociology professor at the University of Calgary, who, at 39, had a heart attack, and at 40 was diagnosed with testicular cancer. The book is a very good meditation on illness and how to move productively in it and hopefully through it. I was struck by one of his passages on the importance of communicating about illness. As he writes, "To seize the opportunities offered by illness, we must live illness actively: we must think about it and talk about it, and some, like me, must write about it. Through thinking, talking, and writing we can begin, as individuals and as a society, to accept illness fully. Only then can we learn that it is nothing special. Being ill is just another way of living, but by the time we have lived through illness we are living differently. Because illness can lead us to live differently, accepting it is neither easy nor self-evident" (p. 3).
Thank you for letting me write about my illness through this blog. I didn't know when it began that it would become such an important outlet - it has become not only a place to let you know how I am, to feel connected to you all, but also, now, a place to write about what it means for me to be sick. It means more than you may know to me when you write back through this medium.
Off to bed,
Kip
I'm back. Today I struggled with some nausea on and off for the day and had pretty low energy. The latter can also be caused by my ongoing low blood pressure (94/50 as taken by the nurse today). She gave me the hormone shot again, and, as I write, my freaky nails continue to grow. I just cut them four days ago and already I can hear then clicking against my keyboard. Perhaps I will let one grow just to see what it looks like by Halloween.
Yesterday, as we waited for chemo, we started reading Arthur Frank' book "At the Will of the Body" (thanks to Mary Louise for the suggestion). He is a sociology professor at the University of Calgary, who, at 39, had a heart attack, and at 40 was diagnosed with testicular cancer. The book is a very good meditation on illness and how to move productively in it and hopefully through it. I was struck by one of his passages on the importance of communicating about illness. As he writes, "To seize the opportunities offered by illness, we must live illness actively: we must think about it and talk about it, and some, like me, must write about it. Through thinking, talking, and writing we can begin, as individuals and as a society, to accept illness fully. Only then can we learn that it is nothing special. Being ill is just another way of living, but by the time we have lived through illness we are living differently. Because illness can lead us to live differently, accepting it is neither easy nor self-evident" (p. 3).
Thank you for letting me write about my illness through this blog. I didn't know when it began that it would become such an important outlet - it has become not only a place to let you know how I am, to feel connected to you all, but also, now, a place to write about what it means for me to be sick. It means more than you may know to me when you write back through this medium.
Off to bed,
Kip
Thursday, October 7, 2010
Chemo 4: Half done!
Dear friends,
Catherine here. It was a long day, chauffered by Judy Davidson, we waited 3 and a half hours to get into chemo daycare, but Kip is now officially half way through chemo! She is now sleeping and will write again tomorrow. In the meantime, know that your poetry helped us pass the time today in the ward.
Love to all,
Catherine
Catherine here. It was a long day, chauffered by Judy Davidson, we waited 3 and a half hours to get into chemo daycare, but Kip is now officially half way through chemo! She is now sleeping and will write again tomorrow. In the meantime, know that your poetry helped us pass the time today in the ward.
Love to all,
Catherine
Wednesday, October 6, 2010
Wednesday, October 6
How lucky am I to have all of you as friends? Thank you for your poetry and love and cards and gifts and warmth...your support is amazing. And thanks to Lily, my friend and Dorit's 4-year old daughter, for her get well wish (above). Lily, it's beautiful.
Tomorrow is chemo #4, the last of the harsher chemo. By this time tomorrow I will be able to say that I'm halfway through the treatment. I don't look forward to tomorrow, but I really look forward to having it over. Chemo really teaches one to stay "in the moment": if I think about the actual treatment I can make myself really sick. I have concentrated all week just staying present and not going there and that has been a good practice.
I'll sign off and be back in contact in a few days.
With much love and appreciation,
Kip
Tuesday, October 5, 2010
Tuesday, October 5
Dear Friends,
Thanks for the poetry...it's fabulous, funny, moving, and really touching. I love your contributions.
Today we went to see my oncologist in preparation for my next treatment on Thursday and for an update. Tito is one centimeter smaller, and in total, it has almost shrunk in half. Now we really feel like we have this thing on the run. The doctor was palpating under my arm where there was further swelling and that too is down considerably. This makes thinking about the next treatment more bearable.
I ordered a Kindle on Friday (the result of heightened boredom and a handy VISA card) and it arrived today. I downloaded my first text, Ruth Rakoff''s new book *When My World Was Very Small.* It's the story of her challenges during treatment for breast cancer, including surgery and chemo. It's smart, sometimes very funny and recounts her treatment at a "cancer centre" in Toronto (which I believe is the Princess Margaret) with, I believe, some of the same doctors I have (only their initials are provided). I can visualize the rooms she describes, so too can I appreciate her fear, her anxiety in the tests, the sounds and smells. It's comforting to read the words of someone who is through the process and now healthy.
We ate Dorit's meatballs for dinner tonight with Catherine's homemade pasta sauce. Julie's ginger cookies for dessert (recipe posted yesterday). All incredibly delicious.
Will I remember how to cook when this is all over? With food this good, perhaps not...
Much love,
Kip
Thanks for the poetry...it's fabulous, funny, moving, and really touching. I love your contributions.
Today we went to see my oncologist in preparation for my next treatment on Thursday and for an update. Tito is one centimeter smaller, and in total, it has almost shrunk in half. Now we really feel like we have this thing on the run. The doctor was palpating under my arm where there was further swelling and that too is down considerably. This makes thinking about the next treatment more bearable.
I ordered a Kindle on Friday (the result of heightened boredom and a handy VISA card) and it arrived today. I downloaded my first text, Ruth Rakoff''s new book *When My World Was Very Small.* It's the story of her challenges during treatment for breast cancer, including surgery and chemo. It's smart, sometimes very funny and recounts her treatment at a "cancer centre" in Toronto (which I believe is the Princess Margaret) with, I believe, some of the same doctors I have (only their initials are provided). I can visualize the rooms she describes, so too can I appreciate her fear, her anxiety in the tests, the sounds and smells. It's comforting to read the words of someone who is through the process and now healthy.
We ate Dorit's meatballs for dinner tonight with Catherine's homemade pasta sauce. Julie's ginger cookies for dessert (recipe posted yesterday). All incredibly delicious.
Will I remember how to cook when this is all over? With food this good, perhaps not...
Much love,
Kip
Monday, October 4, 2010
Monday, October 4
Hi Friends,
We had a really nice Thanksgiving dinner #2 last night with Susan Fast and Julie Salverson. Catherine prepared a fantastic dinner and it was made complete with homemade cranberry sauce from Mrs. ("Mamma") Clarke. Thank you for that.
Today included a walk and some reading (I'm listening to the audiobook of "Girl With the Dragon Tattoo" and it's great). I saw a reference to ginger cookies and couldn't get them out of my mind; tonight, Jules made me some. I've got a few days of really enjoyable eating ahead of me and it feels great to taste such good food.
I wanted to invite anyone who had a poem or short piece of prose to write them out for us on the blog. I really liked your reading suggestions, and if you have anything you might like to post--like a piece of poetry--please do. I'd love that.
Off to the hospital in the morning for an appointment, so I'm off to bed.
Much love,
Kip
We had a really nice Thanksgiving dinner #2 last night with Susan Fast and Julie Salverson. Catherine prepared a fantastic dinner and it was made complete with homemade cranberry sauce from Mrs. ("Mamma") Clarke. Thank you for that.
Today included a walk and some reading (I'm listening to the audiobook of "Girl With the Dragon Tattoo" and it's great). I saw a reference to ginger cookies and couldn't get them out of my mind; tonight, Jules made me some. I've got a few days of really enjoyable eating ahead of me and it feels great to taste such good food.
I wanted to invite anyone who had a poem or short piece of prose to write them out for us on the blog. I really liked your reading suggestions, and if you have anything you might like to post--like a piece of poetry--please do. I'd love that.
Off to the hospital in the morning for an appointment, so I'm off to bed.
Much love,
Kip
Sunday, October 3, 2010
Sunday, October 3
Dear Friends,
Today was the Run for the Cure and my friend Brenda Ravenscroft and her daughter Mitzi ran on my behalf this morning in Kingston. Thank you both, I am really touched. I have run this race many times for other people and it is quite emotional for me to have people run it on my behalf.
Love to all,
Kip
Saturday, October 2, 2010
Purgatory definitions...
Dear Friends,
Walter wrote to me privately today and reminded me that purgatory is also defined as a place where one is cleansed. This makes new sense to me: it's a place where one purges. Thanks, Walter. The cleansers are not so pleasant, but by the end I hope to be purified.
Judy Davidson came by this afternoon and we had a really nice visit. My energy is better today and I had moments of feeling like myself again. I even managed to drive Judy to the subway station at the end of the afternoon. I'm like the "boy in the bubble" when I'm in my car: I want to keep myself physically distant from strangers while my immune is low, but I can drive amongst them and no one needs to know any differently. It's a great way of feeling like I'm part of the world.
As I quipped to Catherine this afternoon, I'm watching autumn arrive by viewing the one tree outside my window (I feel a little like Anne Frank!) The tree is still almost entirely green, and it's always the last one to turn in the fall. When it loses its leaves, I might be close to finishing this treatment. Perhaps we will be done at the same time.
I might go out and cut it down now.
Love,
Kip
Walter wrote to me privately today and reminded me that purgatory is also defined as a place where one is cleansed. This makes new sense to me: it's a place where one purges. Thanks, Walter. The cleansers are not so pleasant, but by the end I hope to be purified.
Judy Davidson came by this afternoon and we had a really nice visit. My energy is better today and I had moments of feeling like myself again. I even managed to drive Judy to the subway station at the end of the afternoon. I'm like the "boy in the bubble" when I'm in my car: I want to keep myself physically distant from strangers while my immune is low, but I can drive amongst them and no one needs to know any differently. It's a great way of feeling like I'm part of the world.
As I quipped to Catherine this afternoon, I'm watching autumn arrive by viewing the one tree outside my window (I feel a little like Anne Frank!) The tree is still almost entirely green, and it's always the last one to turn in the fall. When it loses its leaves, I might be close to finishing this treatment. Perhaps we will be done at the same time.
I might go out and cut it down now.
Love,
Kip
Friday, October 1, 2010
Friday, Oct. 1 - Purgatory
Dear Friends,
I have decided that purgatory is the best way to describe this state of being. Not enough energy to move, nor able to sleep, I am in a twilight of life force. I thought to myself today, when was the last time I really stopped? And I think I never really have. While I have a few editing projects that I am anxious to finish, creating new thoughts seems very far beyond my reach. I am actually settling in to be okay with this, after fighting with it for a time. It is quite strange to think about a whole parallel life going on without me.
Barb stopped by this afternoon for a visit, and she and Catherine went to get the fixings for the next Thanksgiving dinner! Sunday promises to be delicious. I am at the end of the low cycle (day 10) and look forward to a little more energy in the coming days. In the meantime, we have unwatched episodes of Glee ready for us.
Love,
Kip
I have decided that purgatory is the best way to describe this state of being. Not enough energy to move, nor able to sleep, I am in a twilight of life force. I thought to myself today, when was the last time I really stopped? And I think I never really have. While I have a few editing projects that I am anxious to finish, creating new thoughts seems very far beyond my reach. I am actually settling in to be okay with this, after fighting with it for a time. It is quite strange to think about a whole parallel life going on without me.
Barb stopped by this afternoon for a visit, and she and Catherine went to get the fixings for the next Thanksgiving dinner! Sunday promises to be delicious. I am at the end of the low cycle (day 10) and look forward to a little more energy in the coming days. In the meantime, we have unwatched episodes of Glee ready for us.
Love,
Kip
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