Back to Emergency

Hi Friends,

Catherine and I came back yesterday from a really nice few days in Cobourg. We saw her family and spent time with friends who came to visit from Toronto and Kingston. Before we left, however, I could feel some discomfort in my back. For about 20 years I've had a cyst on the left side of my lower back. It has been growing in size incredibly slowly, and, other than having it checked each year at my physical, I haven't needed to think about it. It was hurting on the drive back to Toronto, and when we arrived I asked Catherine to look at it, and yes, it was red. The last thing I needed was an infection this close to surgery, so, in we went again to emergency. We went to Toronto General and it was a zoo of people with respiratory illnesses and the flu. All of the care workers were in masks (I wore mine as well). The wait time to even check in was at least an hour and they weren't able to make any accommodations for people just of chemo (like they did the last time we visited). We signed the wait list, went outside to get away from all of the sick people, and decided to walk down to Mount Sinai, the other hospital nearby with an emergency department. Fortunately, the line was shorter and we could stay at more of a distance from the other patients. Once an isolation room was available, they let us sit in there until we were seen. After giving me some some blessed freezing, the doctor drained the cyst and packed the wound. I never thought that a cyst would become an issue, but, of course, chemo weakens the immune system so that you are unable to fend off infections from the outside or the inside. This thing has been dormant for 2 decades and then flared up this week. Oh well, better this week than next week, eh? Catherine changed the outside dressing once today (it looked pretty nasty with lots of bruising and the like), and a home care nurse will be by in a few days to repack it. I'm back on the couch tonight, sore, but ok.
Chemo truly is the gift that keeps on giving.
Much love,
Kip

Blended Cultures

Dear Friends,

The first photo was sent to me from Abbie Bakan, who
is Catherine’s sister-in-law (and my friend and colleague
at Queen’s). The Chanamas Bush belongs to the
Bakan/Kellogg family and represents their respective
backgrounds (Chana(kkah) + (Christ)mas = Chanamas).
The bush came to their family from their late
Great-Grandma Grace, is made out of plastic, wood
and metal and is miraculously still able to stay assembled
for the entire Chanamas season. The second photo was
sent on by Brenda Ravenscroft (also my friend and
colleague at Queen’s). Brenda hails from South Africa,
and their lovely light display is of an African ostrich.
Thanks to both Abbie and Brenda for sending on images
of their blended traditions. 

We have had a nice few days here in Cobourg. My pain
continues, but my energy is good. Mostly I feel like I
have the immune system of a three-year-old, catching
little bugs as they go by. Fortunately, I have been using
Cold-FX which seems to stop these bugs before they can
get very far. Two viruses in one week is a bit much, but I
guess that’s to be expected. Abbie is keeping us extremely
well fed, we had 11 for Christmas dinner (Catherine
cooked up a storm that night), and we are getting rest. 

We head back to Toronto tomorrow where we will
continue our celebrations. 

Much love to all,

Kip

Lights from Edmonton

Hi Everyone,
This is my friend Rory who lives just north of Edmonton with his mom Patty (who has been a regular contributor to the blog). The photo was taken at Maisie's Magical Christmas house in Edmonton. This is a great photo, Patty, and thanks.
We did a little food shopping today and bought a turkey. Tomorrow, Catherine's brother Paul and sister-in-law Abbie will drive us to Cobourg where we will be staying in a nice motel by Lake Ontario called "The Breakers." That way we can visit Catherine's mother Mary and her family. Catherine hasn't had many chances to see her mother over the fall because of her caregiving for me, so this will be our opportunity to see her and all the Kelloggs.
More soon and much love,
Kip

Christmas Lights

Hi Friends,
Many thanks to Linda (Julie's sister) and her partner Tamra for sending a photo of some *really* fancy lights at the Parliament Buildings. Fantastic.
If you have any lights to share, please send along a photo.
Yesterday I went to my pre-op clinic. Catherine was not allowed to attend and we wondered why. As it turns out, there were a number of older women there who needed translators, so it was a space issue. One woman spoke no English at all and was trying hard to keep up with the simultaneous translation. She had a very trying few hours, and I really felt for her. Then there was Winnie, a senior Chinese woman who had been to this rodeo before - 1 chemo and two surgeries, and back for her third. When I asked her how she was handling another surgery she just smiled and waved her hand as if to say "been here, done this before." Each one of of the patients (6 in total) was having a different procedure (one was a lumpectomy, the rest were mastectomies, some with no lymph involvement, some with lymph dissection, some with a sentinel node biopsy on the other side just to be sure there isn't also cancer there). I was the only one getting the full procedure - a double with lymph dissection next to Tito and sentinel node biopsy next to blanket. My surgery will be about three hours long.
But I'm going to try and put that procedure out of my head for the time being and just enjoy the holidays and the feeling of not being in chemo. Surgery will come when it comes and we will be ready for it.
As part of the clinic, we were visited by physiotherapists (I got more squeegee balls, but no rope), a dietitian, and a social worker. The social worker talked about the importance of support and being able to reach out. She was an older woman who didn't know about the power of blogs, so I'm going to share with her more of my experience in case that might be of help to new patients. She was very impressed with my tremendous support network, and I think this blog can model for her what's possible during treatment and recovery.
Much love,
Kip

Thanks for your many gifts

Hi Friends,
I want to thank you all for your continued gifts and thoughts and acts of love. I've had food delivered at the door, gifts left outside on the porch, bread sent by courier, CDs come by mail, pictures sent to my inbox, and the list goes on and on. Today, Julie Salverson, who is visiting Japan, sent me these photos of the Golden Temple in Kyoto, where she lit a candle for me (the tall one on the right). Thank you Julie.
We had a wonderful dinner last night. We ordered a fantastic bottle of wine, I enjoyed a full glass, and my body was entirely cooperative. When the bill came, I was informed that my brother Fred, who lives in Halifax, had called the restaurant in advance to pay for the wine. Such a sweet gesture. Something I have learned about myself over the last few months is that when people reach out to me and show kindness, I'm really touched, often to the point of tears. I have cried many times this fall when your gifts have arrived and I have witnessed your acts of love. Needless to say, when I realized what Fred had done, I really teared up. Fortunately, Catherine has taught me that public crying is always permissible (she calls herself a "professional" public cryer), so I'm getting more comfortable with it now. Each time I tried to thank my loved ones last night for helping me get through these past few months I teared up and wasn't able to speak. But I know they understood.
What I also realized last night is that when you have a hot flash in public you just can't rip everything off and throw your chinchilla on your shoulder. I'm now used to being in my own home and immediately readjusting my temperature. I reached for my hat a few times, but caught myself before I took it off. Next lesson: always wear layers.
Love,
Kip

Small Steps

Dear Friends,

It has been a few days since my last entry. I had a good week and felt like my body slowly is coming back. I had several appointments this week, one on Tuesday with Ruth my G.P., who took time to talk with me, and, after an exam, told me that I had a "tremendous response" to the chemotherapy (she gave me my last exam at the beginning of August, so she was impressed with the overall change). She also told me that the joint and muscle pain from the Taxol will likely continue for months, not weeks. At least it's good to know what to expect.
Then Wednesday at noon, Catherine and I went to a lymphedema clinic at PMH. As my cousin Ellen said, "Oh great, more information about terrifying shit that *might* happen to you." So true. Three out of ten people who have this surgery develop lymphedema, so while it's more likely you don't get it, they want you to have information in case it happens. I didn't know what it was: apparently, once they remove some of the lymph nodes under the arm, fluids can have a hard time getting back up the arm so it swells up. This can happen right after surgery, or can happen at any point after that. One woman at the clinic finished her treatment a year ago and just last week her arm swelled up. Sometimes as you get older and the lymphatic system becomes more compromised, it happens then. Humph. So I will do all my exercises to keep fluids flowing.
Speaking of exercise, they also informed us that 3-5 hours of cardio per week reduces the risk of breast cancer recurrence by 50%. If I ever needed a reason to be hitting the gym more often, I have it now.
I was kind of shaken after that clinic: suggestions for taking short showers rather than baths (to avoid heat and swelling), precautions for airplane trips (changes in pressure), avoid shoveling and heavy lifting, etc. I'm really hoping this isn't part of my future, and I'll do everything I can to avoid it. Starting with a physiotherapist (I have some good names and will start shopping next week).
After the clinic, we took a cab up to Sunnybrook where my cousin Ellen and her husband Gary were for a follow-up appointment. We had a short and really nice visit with them. Ellen's wig is great and she looks really good.
Finally, we caught a cab to see my opthamologist. She wanted to see me after chemo, because the taxol can be hard on the eyes. Sure enough, my eyes are totally dried out to the point that I have some neuropathy (although taxol makes you tear up so you don't know how dry the eye actually is). I'm on special drops every four hours until April.
I had an amazing experience as we left that appointment: my eyes were dilated, and it was dark (5:30), and we caught a cab down Yonge Street to pick up the Lake Shore home. With dilated eyes, Yonge Street looked like a fantasyland. I've never been on acid, but this must be the closest experience: all of the Christmas lights, the trees, oh it was so beautiful. I sat in the backseat of the cab with Catherine, relieved to have had my appointments, enjoying the lights, finished with chemo. Fantastic.
After a big day, I rested Thursday, then yesterday I went to see a matinee with Barb (before all the kiddies got out of school). Judy Davidson and Catherine were shopping yesterday and the three of us had a quiet night at home yesterday. A great end to the week.
And tonight--tonight!-I am taking Catherine, Julie and Susan out for dinner to thank them for taking such good care of me. I wish you all could come with us. We are going to a little Italian restaurant up at Bloor and Royal York I've never been to (but Catherine and Julie really like it), and I'll have half a glass of wine. I had a few sips of red wine last night. It tasted wonderful but didn't settle well with my stomach. Tonight I'll just have a symbolic sip.
I will toast all of you.
Love,
Kip

My Chinchilla

Hi Friends,

Well, tonight I'm one big ache, especially in my hands and feet, which is apparent largely when I'm not hot flashing. Giddy up. When the heat comes up in my body, I rip off my little black toque that Catherine brought me in September. I call it "Chinchilla" which, according to Wiki, is a small crepuscular rodent (please see image above). Sometimes Chinchilla sits on my shoulder while I cool off, sometimes I lose it under the couch and have to go on a hunt for it. I'm incredibly grateful for it - I had no idea how much I'd miss my hair, not only for aesthetic reasons, but because it simply keeps my head warm. How do bald folks manage?
It's fortunate that Catherine likes the shape of my head. Sometimes when I'm sitting and minding my own business, I feel a hand playing with the shape of my head and stroking my very short "hair." When Julie was a kid, she had a hamster named Spike, and this has become my new nickname. "Hello, Spike" Catherine says lovingly. At least we can laugh and have some fun with it until my new sexy Elvis hair grows in (dream with me).
Love,
Kip

Hi Kip:

Here's another yo-yo....

http://www.youtube.com/watch?v=KAkoYcfDmrk

Much love and see you soon!

Abbie

To the Tune of "Surrey with the Fringe on Top"

Jeeps and trucks and police better scurry
this kid's comin' home in a hurry
no more pokin', proddin or worry
'cause my chemo's stopped.

Watch me now and see what I'm doin'
Lots of things that I've been a savin'
Looking forward with anticipation
to escape this incarceration.

The weather is cold and the snow is nigh
I want the time to enjoy it all
Looking forward to things I have missed
Even doing the shopping mall.

So look world I'm comin' back
Just watch me bloom and grow
With thanks to my friends who love me
I'll be dropping in to say...hello.


Thanks to Mamma Clarke for putting pen to paper and coming up with these new lyrics.

I'm feeling good today, tired right now, but good. My biggest challenge these days is sleep. A quick onset of chemically-induced menopause really throws the body for a total loop. At night, it's like having restless leg syndrome but for the whole body...while you sweat. And then get chilled. Then sweat again. No combination of drugs seems to make any difference. I'll be in to see the doctor this week to see if there's something we can do.
Still, I'd take this over chemo, anyday.

Here's my latest fave flash mob (thanks again Momma Clarke), guaranteed to make you smile or cry, or both.

http://www.youtube.com/watch?v=NB3NPNM4xgo&feature=player_embedded

Much love,
Kip

The Waiting Game

Hi Friends,
It's day seven, so I'm just starting my low three days, but I'm doing alright. I still have quite a bit of joint and muscle pain which seems to worsen at night, but I'm slowly getting myself back. Now it's a waiting game...I sooo want to go out into the world, but I'm not yet up to it and still too vulnerable. Hence, the yoyo, which Shannon Lord sent to me early in the chemo process. I'm relearning how to "walk the dog." I suck at it.
I'd like to give you all an update on other folks and their treatment: Shannon (Susan Lord's sister for those of you at Queen's) had her second mastectomy last week and it went well (she went through breast cancer last year and had a single mastectomy at that time). Dorit's brother Michael, who lives in Tel Aviv, had his first chemo treatment for lymphoma and it went very well. He has three months of treatment to go. My cousin Ellen had her first round of chemo since her surgery for ovarian cancer and she's having a rough go. We will learn tomorrow more about how many more rounds she will have. Karen Frederickson's next chemo is on Friday. I'm letting you all know so you can keep them and their support networks in your thoughts.
On a very happy note, Catherine's cousin, Elaine Kellogg, a United Church minister in Yarker, recently finished 8 rounds of chemo for stage 4 lymphoma and is now cancer free. She will be stopping by to see us tomorrow afternoon and we will celebrate her good health.
I am overwhelmed by the resilience and strength of these people fighting cancer.
I am in amazing company.
Love,
Kip

Left Chemo, Now "In Treatment"

Hi All,
Well, Catherine rented the entire first season of "In Treatment" last week and the three of us have been enjoying a marathon of episodes. We finished the first season tonight, so, between my "In Treatment" withdrawal and the feeling that I finished chemo and should be entitled to *anything* I want, I just ordered the second season from Amazon. That should arrive by the weekend and help get me though the last few weeks of recuperation.
I had my weekend of pain as predicted; yesterday was my hardest day of pain but the oxycodone kept me intact. As of today, for the first time since I started chemo, my body should get progressively stronger and healthier. Catherine and I sat for for a bit on the coach this afternoon, breathed, and watched the snow fly past the window. I had been waiting for that scene since August when we sat here in a heat wave looking at the green leaves on the trees outside trying to visualize winter. The snow today was really lovely, just as pretty as I imagined it four months ago. Prettier.
I believe I mentioned previously that after chemo started I lost my gray hair first, then brown, and then I was left with very thin light brown hair, the colour I had as a baby. I never lost that hair completely, and, in fact, it continued to grow. It has grown from a quarter inch to, well, long enough to stand up on end and make me look like an installation at the Ontario Science Centre. We will take the razor to it tomorrow. The next time we will need the razor, I hope to have a full head of thick hair (with colour and texture yet to be determined...chemo can change both of those). Maybe I'll get the Elvis hair I've always wanted?
I'm off to take my pain meds and head off to bed.
Much love,
Kip

Day two, for the last time

Dear Friends,

This picture was made by my friend 11-year old friend Felix Guenette. Thanks, Felix, for sending this to me...it's great.
I had a very good day today, and tonight, the pain is setting in. Catherine is monitoring me carefully and we are staying on top of the medications. Cath has been dreaming about babies lately, and it makes sense - the first weekend after chemo treatments we set the alarm for every four hours so that her little bald sweetie can "feed" on medications. She says I don't look sick but that I look like a little baby. I'm relieved and happy that that's how she sees me.
We had a good day at chemo yesterday. For the first time we had our own room, an isolation room for folks with compromised immune systems. That wasn't my situation, but it was available and we really enjoyed it. Catherine was very tired and overwhelmed and at one point crawled up on the bed with me and cried. A volunteer passing by gave us some warm blankets and we just snuggled in while the drip continued. Kathy, my friend from Ottawa came in on the train and she and Julie arrived at the room at about 1:30, just as I was finishing up. As I rang the bell, there were many tears of joy and the nurses "whooped" and applauded. God, that felt so good.
We drove home to the playlist which was fantastic, and people were guessing who suggested each of the songs. Thank you again for submitting those. I'll listen to that CD in the years to come and remember the support I had throughout my chemo.
We then returned home to a phone message from Julie Salverson who, with her partner Bill, was ringing her bell in McBurney Park in Kingston. Then I learned of all of the other bells - in the School of Music (Sheri posted that video on youtube, the link is in her post), in the music library, in the Department of Film and Media, in backyards, at dinner tables. Thank you all for loving me so beautifully. It has meant so much to me over the past few months.
Time for bed.
Love to all,
Kip

The Ringing of the Bell

Almost there...

Hi Friends,
It's the last night before my last chemo. We have been crossing off the days of November, and as I look at the photo, I see that with each passing week my hand has become increasingly firmer as I make an "x."
I now have a terrific playlist together for the drive home and to help get me through the next few weeks. Thank you.
Have I mentioned the bell ringing ritual? (I think so, but chemo brain...) The chemo ward has a navy bell called the "Liberty Bell" and patients ring it as they leave their last chemo. It makes me tear up every time I hear it - I think of what people (and their family and friends) have gone through for the last few months or even years. The patients getting chemo, all hooked up to their IV poles, clap (to the extent that they can) and cheer and nurses line up to applaud and give the graduate a hug. It's really moving. I'll be giving the bell my best effort tomorrow.
To add to the festivities, my parents will be ringing their navy bell tomorrow afternoon in Halifax and Julie Salverson will ring a bell in Kingston on my behalf. We will post a picture of our ritual at the Princess Margaret once we get home tomorrow.
With love,
Kip

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

Taxol Nails!!!???

Happy Halloween...

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

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