Thanksgiving

Hi Friends,

We had our last appointment with the oncologist today which went very well. For my exam, I was sitting in my gown with my legs hanging off the side of the examination table, as usual. During the exam he expressed how well things had gone and how pleased he was with my progress. In that instant, I felt relief and was incredibly happy that this tumor had shrunk so much (and, after reading that "Emporer Malady" book, happy that we shrunk it without having to drain any black bile). Apparently, when I saw him smile, some Maritimer gene kicked in and I reached out and gave him a big hug. Now, what's important to know about this scene is that a) he's a bit distant, b) we are behind a curtain, c) I have nothing on from my waist up and d) I have nothing on from my waist up. Not my best move, but there it is. His response, "Don't hug me yet, we don't have the pathology report" took me out of my festive mood. He then gave me information about a study I might be interested in for a post surgery complication that was totally new to me. Oh well...the happy moment with him was short, but sweet.
But tonight we are back in a festive mood with a lovely Thanksgiving dinner to be served shortly, and an episode of Glee. Life is good.
Much love,
Kip

Sunday, November 28

Hi Friends,

I’m sitting here this evening playing with iTunes and making up my last chemo playlist. Thanks to everyone who suggested songs on the blog and by email – the list thus far is varied, and it will make me cry and dance and think of how lucky I am to have you all in my life.

Catherine and I have been reading your books and poetry and listening to your music. I have also been listening to audiobooks while in bed, and I have been surprised by the types of books that have drawn me in. I started in September with Ruth Rakoff’s new book “When My World Was Very Small,” which is her account of managing her breast cancer treatments (I believe I mentioned that book here before). I then read a few books similar to that one, people’s accounts of dealing with cancer and treatment, especially chemotherapy. I found them oddly comforting. It’s not that I wanted to hear about their suffering undergoing chemo, but, yes, I wanted to hear about their suffering undergoing chemo. They made me feel like I had company. Then last weekend I read a review of a new book on cancer entitled “The Emporer of All Maladies: A Biography of Cancer” by Siddhartha Mukherjee, and downloaded it. Reading that book makes me feel so utterly not alone. And incredibly fortunate. Mukherjee gives a history of cancer and its treatments starting with the Greeks who used to attribute cancer to black bile, one of the four humors. Drain that out and cancer will disappear. It’s incredible how long that notion stood up in the medical books and how gross those techniques were (shudder). He then traces cancer treatments alongside the development of surgical techniques (he gives horrific descriptions of cowboy surgeons performing radical mastectomies on patients who are strapped down with insufficient anaesthetics, sometimes just alcohol), developments in radiation, then chemotherapy. Hearing stories of wire placed on hospital windows so that long-term chemo patients don’t attempt suicide jumps makes me grateful to be sitting in my own little warm home, even if I am in some pain. The treatments were so different even a few decades ago, it makes me thankful to be dealing with this illness in the early 21^st century. Even last week I was Skyping with my parents and my father, who lost his voice box to cancer 14 years ago, told me that his new oncologist gave him an exam and admitted that he had never seen that radical a procedure in his recent training (they took a lot of muscle and tissue in his neck, shoulders, and throat and he now breathes through a stoma and suffers from quite a bit of pain). Today it’s a totally different protocol. Anyway, this book recounts some of the progress and setbacks of cancer treatments, and I can only read it during the day – some of the images slipped into my dreams and it wasn’t pretty. But it’s quite gripping reading for anyone interested in that aspect of medical history.

Much love,

Kip

Three Months Today

Hi Friends,

I began chemo three months ago today. While I have made some progress in my relationship with time, I am still temporally challenged. On days like this one, when it's grey and damp and cold, I want to go out beyond these four walls and sit in a cafe and have a coffee, look at lights, hear totally annoying Christmas music in the malls. It's surprising what I miss while in this isolation. I miss feeling well, that feeling of moving through the world with energy and life force and excitement. It's hard to hear from the specialists that it may take months or even years for me to feel 100% once my treatments are over. But I know I will again. Today, it seems like that's a long way off.
On the bright side, it's only one month until Christmas Day. I think this is the year I will make a snow angel, if the weather permits.
Love,
Kip

Tuesday, November 23

Dear Friends,

Thanks to those of you who already have suggested songs for the drive home from the last chemo. Catherine and I talked about this more and invite anyone who is interested to suggest a song/piece that not only takes us home that last day, but also helps get me through the last two weeks of chemo. I love the idea of you all being here with us (musically, at least) as we come through the home stretch.
We met with the surgeon today and decided to go with the option that would give me the smallest chance of recurrence: a bilateral mastectomy, with lymph dissection on the left side. He will also biopsy the lymph on the right, although he doesn't expect to find anything there. It was a strange feeling to sign the surgery papers, as it was to talk with the radiologist yesterday. The chemo has been so all encompassing, it's sometimes hard to imagine that there are still two more stages after this one. Signing the papers for a surgery on January 6 reminded me that the next stage comes soon. I have been saying that surgery and radiation won't be as hard (and I don't believe they will be), but they still have their weight, their own side effects, both in the short and long term. Still, I need to keep my focus on getting through chemo and let the rest take care of itself in the new year.
This is a lesson for staying in the moment.
And listening to good music.
Much love,
Kip

Monday, November 22

Dear Friends,

It has been a quiet few days. We met this morning with the radiation oncologist (who is quite wonderful) and tomorrow we meet with the surgeon. Kip is on the highest dose of pain meds and it is keeping the roaring fires of pain at bay; they are muted she says. This round Kip has been very very tired, which makes sense. Fatigue is a really regular side effect of chemo, and sleep has been a bit elusive.

We are looking at the calendar and see that we can now say that the last chemo is next week! In anticipation of that event, we invite those of you who might be so inspired, to think of a song we can make a mix out of. The drive home from the hospital is about 45 minutes, so that would be about 7-8 songs. Remember, we will have been crying (okay, I will have, but I bet Jules, Kip and Kathy will be too) and Kip will not be totally perky. Then we can play the mix and think of you all, who have held us with your thoughts and love over the last four months.

Love to all,
(and to those reading from Edmonton, yikes! -32?)
Catherine

The Christmas Lights Go Up

Dear Friends,

As many of you know, I am very excited by the thought of Christmas this year because I will finally be finished with my chemotherapy. To celebrate, Julie put up some Christmas lights last week and we decided to wait until Thursday to light them, something to look forward to when we returned that night from treatment. Sure enough, while Catherine and I were at chemo, Julie came home and turned them on so they would be lit up when we returned. Kathy and Yves learned of this plan and they too turned on their lights that night (the second picture is of Kathy, Yves, and their sons Isaac and Felix). Thanks K and Y for sharing in my enthusiasm. If anyone else might like to share their lights, please send me a picture and I will post them.
I'm managing some nausea today and I'm really tired. I'm taking the max dose of Tylenol 3s and I have the high dose Percocet ready for when the second layer of pain hits tomorrow. We now have this down to a science and know what to expect, so it's just getting through it. I'm incredibly grateful for Catherine and Julie and all of you tonight.
Kip

Chemo 7, November 18, 2010

Dear Friends,

Today was merciful. We got in early. Kip figured out she could ask for a bed before we even went in. We had a good nurse who couldn't get a vein easily, so, saying that she didn't want to make Kip her 'pin-cushion' and confessing that she was not super-skilled at this, 'kicked us upstairs' to the really really good nurse who found a vein without pain or aggravation. The Tylenol-3's made this, and everything else, easier. The drugs were ready on time and we got out of there by 2:00.

Judy Davidson came by for a visit, which was great. The grilled cheesus (an in-joke for Gleeks) were delicious. I read Kip an article about miracle healing in Brazil from O magazine. As far as a day in chemo-day-care goes, it was a roaring success.

We have now had our leftover Thanksgiving dinner and are exhaustedly looking at bed. Kip is tired but not in pain and the nausea is pretty low for Day One. But we are socked in with new pain medications and new sleeping medications, and so are feeling confident about the days to come.

Thank you for all of your thoughts, love, support and strength. One more to go.

Love to all,
Catherine (for Kip)

On the Road Again...

Hi Friends,
We are beginning to pack up for tomorrow.
As many of your know, I have been looking forward to the Christmas season for months because it will signal the end of treatment. Julie has put up some Christmas light out front, and will be turning them on tomorrow night once I return. That will make me feel that much closer to the end. After tomorrow, only one more to go.
Much love to all of you, and I'll be in touch in a few days.
Kip

Thank you...

to everyone who responded to the riddle. It really had us laughing, and if you have more ideas, please continue to post. We will check in to see if any new ideas come up. Bravo. Your suggestions, like all of the ideas and poetry and gems posted earlier, are *really* amazing. Thank you.
We went for my blood work and meeting with the oncologist today. It was a long wait, we left here a little after 9:00 and arrived home after 3:00. My oncologist was so far behind that we saw someone else in the practice and I liked him very much. I felt that he really tried to answer our questions and he was very pleased with my progress. As Catherine pointed out after the appointment, you know you are doing well when they are that playful with you. If things aren't going well, on the other hand, doctors are very "kind." He talked about some of their recent publications on my chemo protocol, and it's quite clear he's not only happy for me, but also happy for his research profile. I'm good with that. Make me a happy stat.
Before he did the exam, he asked me to find the tumor. It's hard for me to identify its boundaries because it's all embedded within the dense tissue. The only way I can describe their technique is that it's similar to opening up a hood of a car. You know when you feel underneath the hood for the latch? That's it. I feel his fingertips and then whammo! he gets his nails under it. It hasn't shrunk much, but he said that some of that could now be scar tissue, so it's harder to know what's cancer and what's not. Same under the arm. Ultimately they won't know until surgery, but at least it's not getting bigger, and, with luck, more of that tissue will simply be benign.
While we were waiting for blood work, we wandered around the library/bookstore on the main floor of the hospital. One of the featured books is that depicted above: Chemotherapy and Radiation for Dummies. I particularly like the calm hands on the cover. If I had the energy, I'd do like Rick Mercer - you know at the end of his show when he posts a picture and then invites viewers to manipulate the image into something funny? My chemo book would feature a slightly more white-knuckled model with ridged nails.
Hmmm...and perhaps we should place a small white rope around her wrists?
Kip

The Riddle...

Hi Friends,
I recently received a support package from the Canadian Cancer Society. In that box were the following items:
1) Pamphlets on nutrition and adjusting to a cancer diagnosis;
2) A yellow "squeegee" ball to keep up hand strength;
3) A pink pillow with pink and red poodles and a pink ribbon on it;
4) A rope.
A rope? Does anyone else think that it's a bad idea to give someone undergoing chemotherapy a rope? I could imagine a long rubber band for post-surgery exercises, but this leaves us slightly confused.
If any of you have suggestions on how we could productively (and safely) use this item, please feel free to suggest them to the blog. Prize for best suggestion: a rope.
Love,
Kip

Side Effect #24

Hi Friends,
I'm having a quiet evening alone here at home tonight. Catherine flew to Boston today to do a few days work in an archive at Harvard and Julie is out to dinner this evening. I'm sitting and enjoying a plate of Abbie's lasagna. Soon I'll glove up and take a bath, then I'll watch some tv.
Tonight I'm struggling with a harmless yet annoying side effect I don't think I've mentioned on the blog: chemo nose. I was warned that I might become sensitive to certain smells once chemo began and that was true. The first week post-chemo I couldn't stand certain smells--citrus, lotions, anything very strong. Then my overall sensitivity to all smells settled down and I developed a higher tolerance. The side effect that I developed by early September, however, is the experience that everything smells musty. It's there all the time, and it's worst after I come out of the bath or shower. At night I have to sleep with the window open or I feel like I'm in an old musty attic. This overpowering singular "ghost" smell, I have learned, is fairly common for chemo patients. I read about one woman who had to live with the windows always open because her whole house smelled like a freshly-painted car. My colleague Leda, who also teaches at Queen's, finished chemo in August and everything to her smelled like rotten garbage (that's a bad one). So mine is the preferable of the smells, but it still wears me down. We have tried burning essential oils and scented candles and the like, but only fresh air helps. It's one of the side effects I never could have imagined, and I'm glad it will be leaving me by the time we hit the dead of winter.
Much love,
Kip

Thursday, November 11

Dear Friends,
This past August, as I was beginning chemotherapy, my friend Giselle went to Italy for her sabbatical. Giselle has an apartment on Lake Como, one of the deepest lakes in Europe, and offered to take some of my hair to place in the water. In the end, she took a few of my locks, as well as some strands from Catherine, Julie, and Kathy. This fall, she made a tiny doll (shown above), placed the hair inside, and sent it off on a small pod into the lake. The idea was that when my new hair grows back and I recover (next summer), I will meet her back in Italy, we will cut off a few new strands and place them in the lake to replace the old hair. Thanks, Giselle, for following through on the first part of this ritual, and I really hope to meet you at Lake Como to complete it.

Love to all,
Kip

November 9, 2010

Dear Friends,

It has been a typical day here on Berl Ave. Kip is entering the low blood/energy part of the 2 week cycle and it has been a day of transitioning to that. The day began at a low point with a series of hot flashes before Kip was even out of bed. Yes, it's true. To add insult to injury, she is now coping with chemo induced menopause. Oy. For those of you who may have had this wonderful experience, it is often triggered by strong emotions. So imagine if you will, the strong emotions of being in pain and feeling beleaguered that then trigger a hot flash. Ohmygod, what more trials are there? However, it was beautiful out and we went for a walk in the neighbourhood and talked to the ducks in Mimico creek and life looked up again.

Kip has cut back on pain meds and is at this point without any pain medication for the first time this cycle. Woohoo! Julie and I are drinking a lovely bottle of Italian red and Kip is sucking back mineral water and we had Abbie's delicious lasagna for dinner. I have never seen such a big casserole and I am a minister's daughter so that's saying something. Thank you Abbie! We are anticipating a new Glee episode followed by a new episode of The Tudors. The shift from dancing singing nubile fantasy Ohio high school students to Henry the VIII beheading his wives is a complex maneouvre, but we are used to those here.

Wishing you all a great night,
Catherine (for Kip)

Sunday, November 7, Giving Over

Hi Friends,

Today I began to reflect upon how I now pass the days. When I began chemo, I found myself kicking back at time, unsure how to work with it. I remember one particular day when I was on my bed, nauseous, looking at the digital clock: 1:00 pm. Then, what seemed like some time later, I looked again: 1:05. Panic. Oh my god, and this is only August. How will I manage until December? I was so unclear about how to make friends with time. How do I will this fall to pass quickly without wishing my life away? What will I have missed because I was just wishing it to be over?
I have come to learn how little I can do in a day and still be ok, making peace with time by observing it as I would a slowly moving train. I watch it pull into the station, slow down and pull out again, but I don't feel the same need to chase it, I can let it go. Tomorrow, another train will pull through. I don't need to get on this one today, nor the one tomorrow. They just keep coming, everyday. One day I'll get on, but until then, I'll sit and practice being content on the platform.
I started on Percocet tonight to manage the pain. The pain is still there, slightly muted, but it's not "pingy." Certainly better than last round. Thank god for strong drugs.
Much love,
Kip

Rock Lobster

Hi Friends,
Thanks to all of you for your emails and wishes over the last few days. I'm feeling better on this round of Taxol because we now have a better sense of what to expect. I started taking the Tylenol 3s sooner, knowing that when the growth hormone pain adds in tomorrow I have the Percocet to manage all of that. Last time I was afraid of maxing out and running out of options over the weekend and stubbornly resisted taking the full amount (against Catherine's better advice). This time, however, it feels like we have pain management covered.
I can't tell you how much better this past Thursday went over the previous round. Catherine had all of the bases covered and looked like she was moving in when Julie dropped us off at the hospital. She brought my fave cozy blanket, a beany bag to warm my feet, a pillow, and attended to my every need. Once the Taxol started, these needs were significant. For instance, around noon Catherine went down to the Druxy's downstairs and got us each our "usual": a delicious grilled Swiss cheese on challah bread. We have this every chemo day. The only problem was, with my nails on ice this time, I couldn't feed myself. (Several of you emailed asking about this process, so Julie took a photo, above. The bags have pockets in the back where you slip your fingers in so as the ice melts your nails are protected. You just look like you have lobster claws. The design is quite clever.) So Catherine fed me my lunch and people around me were commenting on how lucky I was to have such support. So true.
Catherine also encouraged me to start with the pain medications before the infusions started and this also made a huge difference. Not having that nasty pain for the 6 hours really made it more bearable.
I'm pretty tired today, and about ten minutes ago Tito started to burn. I'm going to have a rest now and just feel this illness leave my body.
Much love,
Kip

Chemo 6, November 4

Dear Friends,
Catherine here. Today went well, much better than last time. We arrived early and got the 'corner suite': a real hospital bed. That, plus the pillow, blanket, beanie bag, and tylenol 3s, (and an angel nurse named Michael) made everything much smoother and easier than last time. We arrived at 8:10 (thanks to Julie for the ride in the dark!) and left at 4:10. What we first thought might be three hour days are clearly a whole day, once they give pre-meds and infusion.

In order to protect her finger tips, they put Kip's hands in baggies of ice chips. This is a low-tech approach; when the capillaries leading to the fingers are constricted, the poison, ah, 'medicine', doesn't reach there. So this seems like it would be uncomfortable, but it seemed just fine.

For now, Kip is a little nauseous and tired, but it was a much less traumatic day than last round.

We came home to another surprise package: Thomas More's 'Dark Night of the Soul' (which I have read but Kip has not) and a paper doll book of pirates for me (I'm doing research on pirates right now). Thanks Mary Louise!

Kip has a new symptom you might as well all know about. When the UPS man drives down the street, or stops in front of the house, she stands at the window and wags her tail. If the UPS man comes to the door, well, then she, um... barks...very convincingly I must add. This makes me laugh.

Odd. Perhaps a transient symptom.

Now, to get through the next few days. We feel prepared with percoset and the recipe for a date loaf that will counteract the effects of the opiates.

Love to all,
Catherine (for Kip)

Back to the Rodeo

Hi Friends,

Well, we have our special gloves and socks, a blanket, a pillow, a book, ipods, and many drugs. I woke up this morning with a small cold that I likely picked up at the hospital yesterday, but tonight it feels under control. I was in disbelief about this cold this morning - I haven't been in public (other than the hospital) since August and as many of you who have come to visit me know, I've been incredibly careful to minimize my physical contact with everyone. Just goes to show you can't control everything. It will be fine.
I also want to thank my Secret Santa. Today the UPS man delivered a book by Carlyle Hirshberg and Marc Ian Barasch entitled *Remarkable Recovery: What Extraordinary Healings Tell Us About Getting Well and Staying Well.* It looks really good and will be great reading over the next few weeks. Thank you Santa, whoever you are...
I'll be back to the blog in a few days.
With love,
Kip

Tuesday, November 2

Dear Friends,
We are back from doing blood work and a meeting with the oncologist. The good news is that Tito continues to shrink. The unfortunate part is that I have a number of side effects on this second week that are still giving me grief: I have neuropathy in my fingers and toes, my eyes are really burning, itching and tearing, my nausea hasn't entirely left me, bad sleep and night sweats have begun (possibly the start of chemo-induced menopause) and now my nails are beginning to ridge and ache. So for these and other reasons, we are making a few adjustments to this week's chemo.
First, to help me with the muscle and joint pain, they are giving me Percocet for days 2-6. The Tylenol 3s didn't manage the pain last time, so we want to get that under control. That pain was so incredibly odd: spots of harsh pain would just light up someplace in my body and made me feel like a pinball machine out of control. The pain spots felt random, and at the height of it, they were in quick succession. I was taking 2 Tylenol 3s each 4 hours, and, combined with the toxicity of the Taxol, my blood work tells us that my liver is unhappy. Hopefully I won't have to take as much Percocet, we are going to change my diet and eat less meat and see if those changes can help my liver feel better.
Second, before the nurses give the Taxol injection, they inject, amongst other drugs, Benedryl to help avoid an allergic reaction. This drug apparently can increase eye pressure, which I really need to avoid. So they decided to skip this injection and watch me carefully to ensure I don't have a reaction. This makes me a little nervous, but I want to avoid post-treatment complications.
Finally, because my nails are ridging and tender, they are going to put my fingers and toes on ice during the injections. This will help reduce the amount of Taxol that gets to the nails, and hopefully help me keep them intact and manage the neuropathy. As I type right now, I don't have full sensation in my fingertips. I'd like to keep that side effect under control.
Several of you have written to me privately asking about the possibility of taking Taxotere rather than Taxol (Taxotere is a related chemo drug with apparently easier side effects). Because my cancer is fairly aggressive, and because there are greater survival rates with the 2-week protocol, the doctors wanted me to take that route. We learned today that clinical trials for this "dense dose" have been conducted with Taxol, but not Taxotere. So I'll be staying with this regimen, but thanks for the suggestion. I really appreciate it.
I'm so glad it's November and now I can say that the chemo will be over next month (December 2nd). Now it's making sure my body stays strong enough to manage the side effects and stay on schedule.
Thanks to all of you for your continued love and support,
Kip