One year...

Dear Friends,

I'm writing on the one year anniversary of my diagnosis. Recent studies suggest that while the five year mark is still critical, the first year is now the most important. I was diagnosed on August 4, 2010, so I'm really happy to be at my first big milestone.
It's also a milestone for my father, who turns 80 today. Two happy events.
Some of you have contacted me and would like an occasional update in the coming year, so I'm not going to sign off just yet. But I'm going to change the picture to show how I look now (the one posted today was taken this past March with my new hair). My hair comtinues to grow in darker than a year ago, my chest is another shape, but otherwise, I look pretty much the same.
Only the inside is different.
Tomorrow, Julie, Walter and I meet to begin planning a small book that will explore cancer, cancer treatment, recovery and life. Julie will take the photographs, Walter will provide the poems. Walter and I have talked about my experiences at length and what he has written is really amazing. I wish I could have had a book like this when I began treatment. Hopefully it will bring someone else comfort.
I wanted to end the first year and begin the second my including a poem Walter send to me a few months ago. It sums up my feelings today...
Love to you all,

Kip

I'm composing poems and singing songs
songs to be played
on bones,
poems that travel
through veins
words that write histories
in the creases
around our eyes
they speak and sing
and shout and ring
running at life
flat out.

July 27, 2011

Hi Friends,

Wow, it has been a long time since I wrote last and I wanted to give you an update. I saw my radiation oncologist last week and got an "all clear." Each one of those happy appointments is really precious right now because if the cancer comes back, it would come back quite quickly, so this is very good news. Last night at my meeting at Gilda's Club I talked with a woman who finished treatment for her breast cancer a month after I did and now it's in her liver. Uugh. Two other people in the group are now checking into respite care (one with brain cancer and one with lung cancer) so I left my meeting feeling very, very fortunate to have this behind me.
Our time at the cottage last month was really good and we were happy to have that time away. I'm now turning to prepare for the fall term. I'm still in negotiations with the insurance company, but I'm hoping to teach just one course this fall and work at 50% so I can get my energy back and my feet under me. So I have started prepping my course kit, which feels strange and good. The faculty at Queen's might be on strike shortly, so I might not be teaching for a while. I--like all faculty members at Queen's--hopes it doesn't happen, but if it does, I will do what I can to help. It's an interesting way to reintegrate back into the university. Back into the throws of life...
Since I have written last I have known several people diagnosed with cancer, so I have been showing them the blog and helping them get set up. It's hard to imagine a support group that would parallel all of you, but I see this format as being a godsend for anyone having to go through treatment.
August the 4th marks my one year since diagnosis, and that will be the day of my last entry to this blog. Thank you all for continuing to follow my progress and celebrate my recovery.
Love,
Kip

Update

Hello Friends,
It has been a while since my last update. Things continue to progress well with my body. Most importantly, I had my first 4-month check this week and I got my first "all clear." My fatigue is as expected for the type and level of treatment I've had, so that just keeps progressing along. I am recognizing the amount of emotional work ahead in my recovery. While in treatment, there is such a focus on curing the cancer, but now it's up to my body now to fend off any new bad cells, and there's grieving to do around changes to my body (mostly my lymphatic system). I will adjust, but I need time to integrate it all.
Which leads me to this week: this past year I registered for "Cottage Dreams," a program for cancer survivors and their families to get away for a week. Ontario cottage owners who aren't using their properties donate them to the foundation in return for a tax donation. Tomorrow, Catherine and I are going up to Brewster's Lake, just south of Collingwood to a lovely property with a canoe and sandy beach. I'm really looking forward to it.
With much love,
Kip

Progress Report...

Hi Friends,
It has been a while since I last posted to the blog and much has happened. Since early April I have mostly been busy with different forms of rehabilitation. Catherine and I joined Gilda's Club and we take gentle yoga there once a week. We both really love the class. There has never been more than two other people with us in the class, and the instructor is fabulous, combining yoga with breathing work. It's a place where I can go and not feel self conscious for not being able to do all the moves. It's a series of fantastic stretches for me as I work at improving the scar tissue left behind from surgery as well as my rotator cuff, which is yelling at me these days. It's very much a 'two steps forward' process.

I also joined Wellspring, a cancer rehab centre, where I am in an exercise program two days a week. This program alternates five minutes of cardio work with strength training and core strengthening. I've been somewhat frustrated at this rehab because I developed more extensive lymphedema on both sides last week, the possible result of trying to increase my exercise program. I'm finding it hard emotionally because I am being so careful and yet the edema continues to build. I've also had issues with the cardio portion because of my heart rate: after three minutes of light cardio my heart rate averages around 175. It has spiked at 206, and the three "coaches" in the program just look at me wondering if I'm going to be ok. A woman I met at Gilda's has heart damage from her chemo (the same protocol I was on) so I'm in tomorrow to see my doctor and have my heart checked. The positive outlook on this is that I'm just really out of shape and the numbers will improve. I'm going with that. But they want me to have a stress test to make sure there was no permanent damage. I'd like to know that as well.

Equally importantly this month has been the peer support at Gilda's each Tuesday night. There are about 12 people in this group of all ages and with all types of cancer. Some weeks I get frustrated because they don't go to the places I want to go, but each and every time I go there I come away grateful for them. Catherine calls this my need to be with other people on "Planet Cancer," and she's right. It isn't a group of individuals who ask "Why Me?" but rather share their experiences about being sick, going through treatment, and fear of recurrence. Most of all, we all feel seen and heard. Of the 12 people, 4 are terminal, so I am also practicing a vocabulary that allows me to talk to people who are preparing to die. "How are you?" in these instances, is never a useful question. Some of these members are getting ongoing chemo (I couldn't do it) some now suffer from depression for the first time in their lives, some live alone, some are single parents and they share phone numbers to help one another through, especially when family and friends are truly burned out. Last night, one of the conversations revolved around returning to work, which is a huge issue for some of us. The facilitator talked about recent studies that draw close parallels between cancer treatment and PTSD. Cognitively, that feels like a thin argument, but emotionally, it seems spot on. Leaving treatment is the beginning of a new phase, and I'm trying everything in my power to be open to it, whatever it brings, no matter how hard. I may have some residual physical and psychological effects having gone through treatment, but, with help and support, I know I will learn to heal and manage them.
Much love,
Kip

Hair in Como, Head in Thoughts

Hi Friends,
This is a picture of Julie dropping strands of my new hair in Lake Como over the March Break. I was hoping Catherine and I would get there this summer, but that just wasn't meant to be; instead, Julie kindly completed this ritual when she was there on holidays. Thanks, Jul.

Before the blog begins to wind down, I wanted to share a passage that I read months ago that has stayed with me throughout my treatment. Last July, after our dear friend Sharon Rosenberg received her terminal cancer diagnosis and I got a callback for a biopsy, I was trying to make sense of what was happening to Sharon and how to prepare for what might be coming for me. I picked up Sherwin Nuland's How We Die: Reflections on Life's Final Chapter. Both Julie and Catherine had read it and both really found it very compelling; I too found it gripping. In this book, Nuland, a surgeon, describes how many of us are likely to die (heart attack, stroke, cancer, Alzheimer's disease, amongst other ailments), but he does so in a way that is compassionate, poetic, and informative. And unnerving.

When I read his chapter on cancer, I came across these passages, which I'd like to quote at some length:

"Cancer is best viewed as a disease of altered maturation; it is the result of a multistage process of growth and development having gone awry. Under ordinary conditions, normal cells are constantly being replenished as they die, not only by the reproduction of their younger survivors but also by an actively reproducing group of progenitors called stem cells. Stem cells are very immature forms with enormous potential to create new tissue. In order for the progeny of the stem cells to progress to normal maturity, they must pass through a series of steps. As they get closer to full maturity, they lose their ability to proliferate rapidly in proportion to the increase in their ability to perform the functions for which they are intended as grown-ups...[Cancer] is a different creature entirely. Some influence...has acted as the triggering mechanism to interfere so early in the pathway of maturation that the progress of the cells has been stopped at a stage when they still have an infinite capacity to reproduce...Knowing no rules, cancer is amoral. Knowing no purpose other than to destroy life, cancer is immoral. A cluster of malignant cells is a disorganized autonomous mob of maladjusted adolescents, raging against the society from which it sprang. It is a street gang intent on mayhem."

I remember when I read this last description of cancer as a gang of raging adolescents, I put the book down, struck--and alarmed--by this image. Once I had my diagnoses, and told that my tumor was "showing signs of aggression," I imagined my cancer as a nighttime beach party with drunk, strong, out-of-control youth running amok. I worked then to wipe this image from my memory, not wanting to give the cancer too much power. I worked against this image for months.

Then I read Gilda Radner's It's Always Something, the story of her struggle with ovarian cancer. Radner's description of cancer cells was so radically different: she imagined them at dining tables, ready for their meals. But in their gorging, they mistaken chemo drugs for food, are poisoned, and can't recover. Whereas when healthy cells take a hit they get back up, brush themselves off, and resume their predetermined task, cancer cells lie there and whine, then crawl away and die off. I liked Radner's description, and throughout her book I laughed out loud, teared up and cried, but mostly, I took inspiration from her. Loud stupid whiners, that's all they are.

I believe my initial refusal to know the type and strength of the cancer cells helped me in my fight. It wasn't going to help me to know how big the beach bullies were, or how much alcohol they had consumed. Catherine held all of this information for me, and I so appreciate her for that (amongst many other things!). Only once I knew I had a "complete response" could I learn more about what I had been facing.

Of course, not even a clean pathology can guarantee that the cancer is gone. Catherine and I were reminded of this yesterday when we went to see the radiation oncologist. The oncologist was with the patient in the next room a very long time and when she came out, we overheard her dictate that her patient had had a recurrence. It's chilling for me to hear stories like that, they chip away at the confidence I'm so thoroughly enjoying every day.

But, as Radner says, "The goal is to live a full, productive life even with all that ambiguity." As a result of reading her book, I have decided to join Gilda's Club in Toronto. They have Tai chi, yoga, lectures on complimentary medicine, and various other forms of support. Thursday I have my first meeting. I'm not sure what to expect, but I hope, like her book, Gilda's Club inspires me.

Kip

The Souvenir

Hi Friends,
Yesterday, Catherine and I went down to the garment compression specialist next to the Princess Margaret Hospital where I was fitted for a shirt. With my new edema, I will need to wear a garment when I exercise or get on an airplane, at least for a while until we have a better sense of what my body will do. When we exercise, fluids move at a higher volume through the body; a compromised lymphatic system becomes overloaded and fluids can't get through the vessels, or or back up the arms. On a plane, changes in pressure also can result in stalled fluid. A compression garment helps prevent lymphatic fluids from pooling.
I was concerned when I first walked into the shop because there were a lot of pink garments. Clearly, this is a very gendered industry. But the woman who fitted me, Mancie, got that I wasn't interested in pastels. I will be getting a few shirts like the one pictured above, with a zipper down the front. If I respond well, I might be able to move into a short-sleeved shirt, and perhaps a vest after that. We will start with more and if I don't need it we will cut back. While lymphedema can start or worsen at any point in your life after lymph dissection, this more often comes within the first few years, so I will just be careful.
Yesterday, Kathy Higgs and I were talking about these garments and she suggested that perhaps the manufacturer could write something on them: "I beat cancer and all I got is this lousy t-shirt."
I bet that would turn heads at the gym.

Kip

Cuts for Cancer and my trip to the Traditional Chinese Medicine Doctor

Hi Friends,
Thanks to Meg Walker for her donation to Cuts for Cancer. I think the new haircut looks great!
I'm plugging along, now 5 days out radiation. I tire like a puppy, but in a few days this will start to turn around. This week, at Julie Salverson's suggestion, I made my first trip to a Traditional Chinese Medicine doctor in Toronto named Xioalan Zhao. She works with a lot of cancer patients and survivors and I was excited to see her and plan out how I will rebuild my immune. It was quite the experience: she began by taking my pulse on both hands and then telling me a bit about my body. She was right on all counts. The question that got me was "Who in your family had cancer?" Now, a lot of people have someone in their family who has had cancer, but she was interested in my father's case and possible connections. Then she told me to strip, get on the treatment table, and cover in a towel (she's a woman of few words). She left and came back with warm tea and pills in a bowl that looked like M & Ms. She put the pills in my mouth (I have no idea what they were) and I swallowed them with tea. Give myself over, I thought. Then I laid back and she started to massage my neck with oils. It felt great. Then whammo! she put a dropper of oil in each of my nostrils. It was a real shock. Then my head filled with eucalyptus and I relaxed more. More things in the nose (you can stop that anytime, I thought), then more neck work. After that she tucked me in (lovely) and the next thing I knew she had acupuncture needles in my left arm. Ah...what's happening here? Because of my compromised lymph on the left side I'm never allowed to get an i.v. there or a blood pressure cuff, but I thought just relax and give over. She knows my situation (no repercussions from the needles as yet, so I'm fine). And I just learned from Judy Davidson via Catherine that acupuncture is good for the lymphatic system. She put needles in both arms and then in my legs and continued working. Then she took them out, turned me over and put them on either side of my spine all the way down. Then she left. Um, Dr. Zhao? (Did anyone else see that Sex and the City episode with Charlotte York in the clinic? That was me.) Then someone came back in and I assumed it was her. Nope. A young man here to finish her work. Okidokey. When he was finished he told me to go to the front desk where I paid and got some herbs that I can't read. Dr. Zhao came to me and gave me a big hug, smiled and said "Next week, we go downstairs - for detoxification!!" She sounded excited. I'm scared.
This is a big lesson in giving over. It feels great to be back on the mend, rebuilding my body.
I will increase my meditation so that I can be fully present in my new protocol.
Love,
Kip

Recovery Begins

Hi Friends,
Julie returned from Italy on Monday night with a very lovely gift: a bottle of Inferno red wine in honor of my last radiation treatment. How appropriate is that?

I'm stupid tired today, but that's to be expected.

We had a nice weekend with my mother. She arrived on Friday night, and on Saturday we got a call from a florist saying that a bouquet was on its way over for her. The flowers were beautiful, and the card read that they were from Ann Clarke. "Momma" Clarke (Barb's mom) has been like a second mother to me during these last eight months, and during that time she has sent her poetry and prose, cranberry sauce for Thanksgiving meals, loaves, wine, to just name a few items. When my mother realized who had sent them, she started to cry and talked about how much she has wanted to be here for me (I asked her not to come but to take care of my ailing father until I was better) and how appreciative she is for all of the support I have received. She really appreciated that gesture, from one mother to another. Thank you, Momma Clarke.

On Sunday, my mother, Catherine and I had brunch with my cousin Ellen and her husband Gary, who were in Toronto. Ellen is recovering well from chemo, but has entered into a post-treatment fear of recurrence. It was really good to see her and once I feel stronger I look forward to being an emotional support to her in this new reality.

Then on Monday we went down for the last treatment. When Mom walked into the radiation waiting area she lost it again. Setting foot in there made my experience of the last few months more real for her, and it brought back the 25 visits to radiation she made with my father 14 years ago. So it was an important catharsis. (I should also point out the music for the day: on the drive down, U2's "Beautiful Day" was playing on the radio. Then the last song on the radiation table was Madonna's "Like a Prayer." On the last beam I heard the lyrics: "Life is a mystery/everyone must stand alone...I close my eyes/I think I'm falling/Out of the sky I close my eyes/Heaven help me..." How fitting.) When I was finished the technicians asked her to come back to meet them, which was really lovely. Then we went for tour of the hospital so she could see the various clinics (we skipped the chemo ward) and be able to visualize where I return for my follow-up appointments. I had imagined that walking out of there the last day of treatment I would be pretty emotional, but I found myself watching her to make sure she was alright. Perhaps that was for the best, although the fact that I have finished hasn't really sunk in yet. Maybe it will feel more real once I get my energy back and my skin starts to heal up.

In Ruth Rakoff's book *When My World Was Very Small,* a memoir of her cancer treatment, she talks about the "cancer gift" - the item you get to buy yourself for getting through this ordeal.
So perhaps the finality of all this will all sink in when I set foot in the new leather boots I've been visualizing...
Love,
Kip

Last Day of Treatment

Hi Friends,
After eight months of treatment, it feels like Christmas Day. If I were a dog, this is what you would see here today. There are more posts to come this week, but I want to take this moment to say thank you for all of your tremendous support.
Thank you, thank you, thank you.
With much much love,
Kip

Treatment Card

Hi Friends,
Above is a copy of my radiation card. At the bottom is a scanner sticker, so each time I enter the waiting area for an appointment I scan this card. My photo comes up to confirm my identity, and the treatment unit is informed that I have arrived. Then the computer in the unit brings up my radiation specifications. When I walk in the room they ask me my birthday to confirm it's me, and everything else in in place. With 457 people getting radiation at PMH each day, this system makes it all run very smoothly. Another reason for me to be thankful I'm getting treatment down there.
Today, Catherine, Susan Fast, my mother and I went to see a movie. It's nice to have my mother here, and we have had a good reunion. Tomorrow my cousin Ellen--who had ovarian cancer--is coming into town and we will all have lunch together. Then the countdown begins for the last day of treatment...I'm excited and scared.
Mostly excited.
Much love,
Kip

Two More to Go...

Hi Friends,
We are getting so close to the end, and it won't come soon enough. The left side of my chest and neck are now raw and sore. I keep reminding myself that it just means that the radiation is working. The fatigue is interesting: it hits hard about an hour after the treatment and I have to sleep, then it eases up a bit. Each day it's a little harder to recover, not at all surprising. People getting treated down there are so tired, day after day. One man with whom I talk each day has a protocol of 20 days of radiation, with two treatments a day. He waits around and sleeps in various parts of the hospital between appointments. So when I feel draggy and sore, I just think of him. At least I get to come home when I'm done.
Tuesday I got a virus on my computer and it totally froze on me. It was one of those nasty ones that disguises itself as something else and I spent too much time and energy trying to get it to work. Yesterday we got it into the shop and then went down to the hospital for the day - doctors appointments, treatment, physio. In between we went to the brain cancer wing on the 18th floor where they have really nice comfy couches and where I could lie down. The physio was working on the fluid on my right side; she did a massage treatment and then taped my side. The skin lifts in four channels so that fluid can more easily drain to my back. I'm now practicing lymphatic massage while I meditate. I learned yesterday that the lymph system responds to both the sympathetic and para-sympathetic nervous system. So it moves more quickly when you have a raised heart rate as well as when you are in a meditative state. I'm working at meditating and massaging that side of my body back to health.
Last night my mother called to say that she's coming to Toronto tomorrow night. My brother is moving in with my father for the weekend, and my mother is coming here for a few days and my last treatment on Monday. It will be good to see her.
I suspect after these past eight months, it will be a teary reunion.
Much love,
Kip

Run From the Cure...

Hi Friends,
Today was the beginning of "graduation week" for my radiation cohort. Today was Miss Rose's last day and she brought donuts for the celebration. As she, Catherine and I chatted in the general waiting area, we were joined by a woman named Tawabish who is now just starting her second week of treatment. Tawabish and I met on several days last week as we waited to go into the radiation rooms, all gowned up. As the four of us chatted, Miss Rose was called in for her treatment; she asked them to go on to the next person so we could have a visit. Saying goodbye to new friends is both happy and sad: I'm so glad she is through her treatments, but I wonder if she will be ok. Her pathology report was not good and she lives alone in north Toronto. My fingers are crossed for her.
Miss Rose, Tawabish and I compared chemo experiences and talked about how the "treatment" make us feel so much sicker than we were before we began. Next week both Tawabish and I will finish and I commented that we will both run from the hospital. "Yes" she said, "we will run from the cure." How true.
I have attached above a photo of the multivitamins I am taking during my radiation treatment. Radiation works by creating free radicals that damage all cells in the affected area; antioxidants protect cells from free radicals, so there is a limited amount of vitamins I can take (a child's dosage) in order for the radiation to still be effective. I haven't chewed my berry-flavored vitamins in many years. It's just another example of my miraculous rebirth.

Love,
Kip

An Uncanny Resemblance?

Hi Friends,
Many thanks to Ruth, Catherine's sister-in-law, for sending us a Shaggy Chia Pet (anonymously) after we posted the Chia photos. Shaggy is now growing hair on the kitchen windowsill and is quickly catching up to me. Catherine gave my my first trim yesterday (not a lot of hair, but a bit of a clean up). Julie took that hair with her yesterday as she left for Italy for the March break. She will scatter that new hair on Lake Como, where Giselle placed my old hair in the fall. Catherine and I won't be able to get to Italy this year as we had hoped, but I'm really glad Julie is able to make the trip.
Not much to report today. Four weeks are now over, and only six more treatments left. My left rotator cuff began yelling this week from the treatments (the surgeon said this might happen), so I was in to the physiotherapist again yesterday; she did some heavy-duty stretching with me, gave me homework stretches and already it feels better. With only six treatments to go I'm confident I'll get through it ok.
This afternoon I'm watching the news coverage on Japan and feeling overwhelmed by the devastation. I feel incredibly fortunate to be sitting here in my home with Catherine, sipping tea, safe and warm.
Love,
Kip

Cuts for Cancer

Hi Everyone,
My friend and colleague Margaret Walker in the School of Music is participating this year in Queen's Cuts for Cancer. She is donating her long, lovely hair on behalf of everyone in our department who recently has been touched by cancer (this includes myself, Karen Frederickson and, I just learned, Istvan Anhalt, a retired composer from the School of Music who is now in palliative care at the Kingston General Hospital). If anyone would like more information on the event, please go to:http://www.qhha.ca/cuts/
Thanks, Meg.
I'm holding up, tired, a bit swollen, red, but, as Catherine reminded me, today I "break the back" of this week. The burn increases on the left side and up through the neck area (they are radiating the lymph area of the neck as well just to be sure). Yesterday the technicians showed me all of the computerized images of where they are radiating, where the beams are directed, etc. Talk about looking like a cyborg, and it would be totally fascinating if it just weren't my body. Best not to think about what's happening in there...
Much love,
Kip

Week Three of Radiation Complete...

Dear Friends,
Sorry for the delay posting to the blog, and thanks to all of you who wrote to me privately to see if I'm ok. I'm doing alright, getting through radiation, with the usual side effects. Today I'm pretty tired, but that's to be expected after the week. Mostly, my left arm is now really complaining about being placed in the cuff. The area is dried out from the radiation, and everything feels shorter, so trying to keep it high up above my head is a challenge. Each day the technicians put my body in the machine and I lift my arm up as far in the cuff as possible. They take all the measurements, re-adjust my body slightly under the laser lights, and leave the room. Then there's a two-second sound of radiation, which is actually a scan to ensure my arm is high enough up and all of the beams are in the right places. For the last 3 days they have had to come into the room 2 additional times to pull the arm up further. Ouch. On Friday I was working so hard my arm was slightly shaking and I thought we would have to stop, but we made it through. Everyone is patient, and we do the best we can. I've got some strained muscles and nerve pain as a result of the pulling and the general swelling, so it's great to have the weekend to recover.
The burn is getting more pronounced, but I'm marinating in aloe vera and Lubriderm and that's really helping. When my father had radiation to his neck area in 1996 he developed 3rd-degree burns, and because we have a similar skin type, I'm being really careful to keep my skin as hydrated as possible. I think I will be fine on that front.
I began working with a lymphatic drainage specialist this week to try to figure out how to manually drain the area that has built up under my right arm. The lymphatic system is quite amazing, and I now have a sense of where the lymph channels are and how to massage them to help direct the fluid. Seriously, between stretching, massaging, and draining multiple times a day, it's like a full-time job.
I have posted two photos, above. The first is of my (oh so grey!) hair in February after it started coming in, and the second one was taken today. It is clearly coming in with lots of wave, still pretty grey but with more brown mixed in. My Elvis aspirations clearly will have to wait, but I'm glad to have a warm head again.
And everyday I'm thankful to have chemo behind me.
Much love,
Kip

Moisturizing

Hi Friends,
I'm happy to report that week two is now complete. It was a short week with the holiday last Monday, but I'll take it. There isn't much to report other than I have the usual side effects: fatigue and a burn that is beginning in the radiated area. This past Thursday was the first day I felt depleted as I left the hospital. The side effects are worst right after the treatment, so I'm making it a practice of coming home and putting my head down.
I began taking Effexor last week to help with the joint pain, and the pain has definitely lessened. The stiffness continues with soreness, and I hear my joints click throughout the day. Uugh. Still, that's better than relentless pain.
Catherine told me that according to Abbie, one of the goals of aging is not drying out. I SO understand that now--eyes, skin and joints certainly take a moisture hit during cancer treatment. Now it's all about keeping my skin moist, and for that I alternate aloe vera and lubriderm 4 or 5 times a day. So far, so good.
Much love,
Kip

"Let the Sunshine In" (From the Musical "Hair")

And speaking of hair...
Thanks to Lauren McIvor, Carol-Lynn Reifel's (CLR's) granddaughter for sending in this photo. It really made us all laugh. And thanks Mamma Clarke for today's song suggestion. I think the photo and song go together particularly well, eh?

I hope all of my friends on February break have a great week and that everyone makes it through this last full week of February intact. Many find it the hardest week of the winter. Spring is just around the corner.

Love,
Kip

Oh the weather outside is frightful, but in here...

Hi Friends,

This week my friend Tanya Lewis told me that if she were going through radiation she might like a playlist that made her feel cooler. So I have added a few Christmas songs that might do the trick. On Thursday and Friday, the technicians were playing Eric Clapton's Unplugged cd. I really like that one, although "Tears in Heaven" always makes me sad and that was the song used on Friday during the minutes with the heaviest radiation. It's interesting to me that their playlist is adult contemporary, nothing offensive. With few exceptions, I am the youngest person in the wait room by about a decade, so I'm interested to see what the 20-something technicians think we might want to hear. Just as long as it's never Anne Murray again, I'm good (strong dislike there).
It has been a challenging week, although not for the reasons one might think. You all know that during the second half of my chemo treatment I experienced significant joint pain. This pain diminished in the month of December, but then new symptoms began: pain with stiffness and burning, and this has escalated significantly in the last few weeks. By last weekend, I managed to walk for 30 minutes only to suffer considerable knee discomfort for the rest of the day, and each morning I would wake up with acute hand and foot pain and stiffness that would take a while to work out. In short, I have been experiencing systemic pain that in many ways resembles rheumatoid arthritis. This past Thursday I managed to see Ruth my GP, and learned that my symptoms are not uncommon for someone who has undergone a chemically-induced menopause. Estrogen is an anti-inflammatory agent, and the sudden loss of that hormone has left my body in one big stiff and inflamed state. She put me on a drug that should give me some relief until my body balances out and learns how to deal with the new reality. Unfortunately, the drug also makes me sleepy, so I get tired more quickly, which will only increase with radiation. I'll see Ruth in another month to make sure we are on the right track. Chemo is once again the gift that keeps on giving.
I'm happy to have one week of radiation now behind me, and my arm is holding up well in the cuff. My left side is getting tighter and I now feel like I'm a walking Picasso painting with my left side of my chest higher than the right. You know when you get dental freezing, swell up like you have a Buick in your mouth, and wonder why everyone isn't looking at you? Something similar is happening here. It's hard to imagine not being able to see the distortion I feel.
This afternoon I also began some new nerve pain in the radiation area, particularly at the incision and under the left arm. I'm on Tylenol for that and we will see where it goes. If it doesn't settle down I'll ask to go back on the nerve pain medication to get me through the next four weeks.
But despite my discomfort, I was reminded this week to be grateful for my optimistic pathology report. On Friday I got a lift to the hospital with a volunteer driver named Opal from the Canadian Cancer Society. Opal and I picked up another patient for radiation whom I had met in September in the chemo wait room. Her name is Miss Rose, and she's a lovely soft-spoken African-Canadian woman in her early 70s. We met on my second round of chemo, which was her last round. The wait was long that day and she advised me to drink lots of fluids to plump up my veins and gave me advice around what the chemo treatment was like over weeks and months. As it turns out, Miss Rose told me on Friday, her cancer didn't respond well to the chemo, and her pathology was not so positive. She had to delay surgery until December because she lives alone and needed to recover from chemo, and then delayed radiation until this month because of her surgery. We walked to radiation together and chatted as we waited for our appointments, and I didn't have a good feeling about her prognosis. Seeing her again reminded me of how much support I have, how well my body is responding to everything we are throwing at it, and how much I appreciate looking to my future. I am very fortunate, indeed.
Love,
Kip

Radiation, Day Two

Hi Friends,

Well, after all of our musings about Sting's "Fragile" during yesterday's radiation treatment, I asked the technicians today about their song choice and why I heard only the intro and the final chord. Andrea and Iris, my two totally lovely technicians laughed and explained that they have a crappy boom box in the room and it skips all the time. So they bring music to play, and they encourage patients to bring in their own selections, although there's no guarantee the machine will play it properly. Today, after getting rigged up in the machine, they started the beams and played their selection for the day: Anne Murray's rendition of "Amazing Grace." It's a little chilling to be radiated to that song and I may never hear it exactly the same way again. I'll see what's playing tomorrow and keep a little log. I'll be going every weekday until the last day of winter, so I'll at least get to know what music my technicians enjoy. By the way, each day I go to radiation unit #15; there are 17 at PMH and 457 people go through them each day. Talk about amazing...

Today, Julie Salverson sent me blog entries by a woman who had radiation in 2009 at Sunnybrook. She commented that in her radiation unit they played April Wine and Gino Vanelli. It seems they are into Canadian content at Sunnybrook. God, I had no idea there might be a research paper here.

Of course, if any of you have a song suggestion, let me know, and I'll bring it in and play it during treatment. I can't think off the top of my head any songs that might have to do with radiation, but I bet someone out there does...

Love,
Kip

PS: I just asked Catherine if she had any ideas and she suggested "Here Comes the Sun" and "Heat Wave." Well done. New playlist anyone?

Radiation, Day One

Hi folks,
Well, the first treatment is now done. The first day entails a lot of measurements, with a number of big scary machines. The technicians were really friendly and tried their best to make me feel comfortable. I received four beams, one from the diagonal left, one from the diagonal right, one straight down, and the other straight up from underneath, through my back. I was captivated to hear so many pitches during the treatment. When the technicians left the room they rang a Big Ben chime. Then I heard throughout the remainder of the treatment a guitar line, followed by a chord, coming through the speakers. It played over and over. I knew the song from which these excerpts were taken, but couldn't place it in the moment -- I was too focused on breathing. But I knew the song had emotional weight. When I sang the song to Catherine after, she recognized it as Sting's "Fragile." It's a gorgeous song, and the excerpts are really pretty, although it's complicated to hear it when you know the lyrics:

"If blood will flow when flesh and steel are one
drying in the color of the evening sun
tomorrow's rain will wash the stains away
but something in our minds will always stay

On and on the rain will fall
like tears from a star, like tears from a star,
on and on the rain will say
how fragile we are, how fragile we are..."

An interesting choice for a radiation unit?

Over the music (which was repeated for the duration of my visit), I could hear the radiation as it was directed at me, the buzzing sound was unambiguous. Some of the beams were about 10-12 seconds, others only about 3 seconds. When I heard the buzz, I would slowly exhale and hold my breath, trying to breathe as deep into my belly as possible and keep my lungs low. The trick to this is staying calm and not needing too much air. I managed with the arm cuff, although it really is high and they repositioned my arm higher twice during the treatment. It was sore after, but loosened up pretty quickly, so I'll manage. More physio tomorrow.
What surprised me most is that my skin was red and warm after the treatment. I really suspected that the first day I wouldn't feel anything and it would build slowly. The redness is now gone, but it remains quite warm. It's important now not to try to imagine treatment on day 25, but take one day, one moment at a time.
That's the lesson in all of this.
Much love,
Kip

Hair (Not the musical)

Hi Friends,

This is a shot of my latest hair growth. Apparently, it's coming in rather gray, eh? It's a bit longer on the sides than on top - photos to follow on how swirly it is, going madly in all directions. And it's soft like rabbit fur (appropriately, it's the Chinese year of the rabbit).
Tomorrow radiation starts. I meet with one of the two radiation oncologists when I first arrive (I really like them both) and they can make sure the fluid is down enough to start the treatments. I was visualizing the radiation last night while I was stretching and imagined the beams as the fireflies from Walter's earlier poem (a much nicer image than voltage going through my body). I'll meditate on that when I go in tomorrow.
Love to all,
Kip

New Growth...

Hi Friends,
My body's recovery and renewal is here evidenced in new nail growth. The old growth is ridged and yellow, the new is mostly smooth. What's interesting is that you can see several rings of colour, each one representing a dose of taxol. So glad that's all done.
Speaking of being done with treatment, my friend and colleague Karen Fredrickson finished her last round of chemo today in Kingston. I hope her recovery is going well tonight.
My physio is coming along pretty well, and I'm now practicing putting my arm up into an imaginary radiation cuff. I won't know until Monday if what I remember of the cuff is accurate, but I'm much more stretched out than I was several weeks ago and I think I'll be ok.
I now have more fluid under my right arm which has resulted in a hard ridge under that arm (it's covered in scar tissue). I'm not sure why that arm is having a rough go given that only two nodes were removed, but there it is. If it doesn't go down, it will eventually be drained. Fortunately, the fluid on the left side continues to go down, and that's what's most important given that the radiation is about to begin on that side.
But all of this seems minor given what's happening in Egypt today. Absolutely incredible.
Love,
Kip

Radiation now on the horizon

Hi Friends,

Today we attended a radiation information session at PMH. There were 4 patients plus support people, and the instructor addressed the various types of radiation for different parts of the body, different types of cancers, etc. Unlike some of the other classes, this one didn't give too much scary detail. In fact, it was interesting to learn about how radiation has changed over the last few years. For instance, someone undergoing my treatment a few years ago would have been fitted with a body mold that would have been attached to the table. That way they could radiate the exposed area and protect the rest of the body. Now the beams are so specific, they line up the beams with the tattoos and radiate. The machine moves around you so they can radiate at all angles, and I'll learn more next Monday (my first day of radiation) how many beams I'll have directed at me over the 15 minutes. I'll first meet with my radiation oncologist that afternoon in clinic, then go in for the procedure. (I'll have lots of company: 457 people are radiated at PMH every day. Incredible.)
That means I'll be finished all my treatment on the 18th of March, just before the official beginning of spring. Very fitting.
Much love,
Kip

From Walter...

Hi Friends,

Walter posted this piece as a comment a few posts back (Spring (and Winter)), and not all of you may have read it, so I decided to post it for all to read. It's really lovely, Walter, and thank you.
Kip


Plucked out of life,
the straining flow.
This will be your
particular trial.
Not a numbing or deadening down,
nor terror known.
A foreign chemistry thrust perforce,
a tarry bolus through silver sliver.
Writhe alive with sculpted pain
searing pulse from vein to vein.
Body's skin cannot contain
the immolating fire.
Flaming drops from lashless lids
burn again again again.
Over the chemistry,
under the knife
cocoon yourself as best you can,
silk to separate
the world from you.
Til an entourage of fireflies
that glow a little
each time they touch you
eases you from purgatory
lifting lightly, you emerge
wholly holy, a heavenly creature
tenderly embracing change.

Love, Walter

Ellen's Last Day

Hi Friends,
It has been a few days since I wrote, and much has happened. Wednesday, Catherine, Julie and I went up to Sunnybrook for Ellen's last day of chemo, (which she started on August 9). It was a big day for me to go and spend 6 hours up with her, and I felt tired after but it was so worth it. Ellen had a horrible morning: her surgeon, who, as far as I can tell could not care less about what he says and how he says it, told her some scary things at 8:00 am. What Ellen heard him say is that they were going to cancel her last CT scan which should never have been ordered, that they've done all they can and that ovarian cancer is hard to treat. Now go have your last chemo. She was destroyed and cried all morning. By the time we arrived (about noon) she had finally fallen asleep so we first had lunch with her husband Gary. After lunch we each took a turn with her (only one visitor at a time), then I spent much of the remainder of the afternoon with her, trying to pull up her spirits. Mostly, I told her stories of insensitive things doctors had said to me about recurrence that made her feel better. We started laughing with some dark humor (we make each other laugh uncontrollably sometimes) and things looked up. Then, for the first time in her treatment, she had an allergic reaction to a chemo drug. Three doctors and two nurses were suddenly around her and things were happening quickly. They got it under control and injected her with an antihistamine that made her stoned (one small benefit from the ordeal). With ovarian cancer, they inject some of the chemo drugs through an IV into the arm, and some through a port directly into her abdomen. At the end of the day, they get her to lie on each side, then tilted back, then upright, to get the drug to spread across the area. This feels incredibly low tech to me, but there it is. When she was finally done, they allowed us all to come into the room where she rang a bell she brought from home, and I joined in with mine. There were tears of happiness and hugs, but it was hampered with the echoes of what her doctor had said. She was certainly relieved to be done, but was it enough? I hope she is able to move on, put this behind her, and live as much as she can without doubt.
But that's the thing about cancer, doubt is always right next door.
I also saw my oncologist this week who was pleased as punch with my results. As always, however, thoughts and talk of recurrence start to creep in. Much of the discussion revolved around my possible participation in a few studies (one I have already completed this week). For the second study, the one he'd really like me to join, I would be required to take a diabetes medication twice a day which has been shown to slow the growth of tumors. There are over 4000 people in this study, and it is being run by the Cancer Research Institute at Queen's. The drawback (other than the fact that I would be taking a drug that I don't need), is that I would be on it for five years. I would be reminded every morning and night about the fact that I had--and still might have--cancer. If I still have cancer after my treatments, this drug might prolong my life by a year or two, but it would not cure it. (As my oncologist reminded me, if my cancer metastasizes, another round of chemo would be palliative but would not cure the cancer.) My feeling is that I'd rather live my life now, knowing how good my pathology report was, rather than be reminded of cancer everyday for the next five years. I realize the importance of participating in studies, but I'm already in three, and that's enough.
I'm still not sure when radiation starts, but I'll let you know when I hear.
Much love,
Kip

Felix's Contribution to the Hair Discussion

Hi Friends,
Here is the latest hair suggestion from Felix. It really amazes me what you all have done with this photo, and thank you!
Tomorrow I will go see my cousin Ellen who is having her last chemo treatment at Sunnybrook. It's *such* a drag that it will take place during the snowstorm, but she and her husband came in from Peterborough tonight just to be safe. I will take the TTC and/or taxis to get around. Unlike the chemo ward at Princess Margaret, they don't have a bell at Sunnybrook, so I will bring a bell Giselle gave me following my treatments and ring it nice and loud when she walks out for the last time. I'm sure it will be an emotional moment...
More soon,
Love,
Kip

Spring (and Winter)

Hi Friends,
I'm pleased to introduce my new eyebrows, which now accompany tiny eyelashes, and really soft baby hair on my head (Catherine calls it my "down"). However, in the category of "more information about chemo than you ever thought you'd know," I find it quite curious that it's spring in my body from the waist up, winter from the waist down. Go figure.
I'm eleven, again.

Here's another reality I never saw coming: when I drink something cold, it feels like it's going down across my entire chest and it actually hurts. Like a "brain freeze" in my rib cage. Any thoughts on why? Is it possible that Tito and Blanket provided some sort of insulation and now I'm more exposed? I will get used to this, of course, but it's another one of those curious bodily changes.

Catherine is feeling better, at home, and now seems to have turned the corner on her flu. This is fantastic. My nerve pain continues to fluctuate and my mobility is improving, although I'm not yet ready to put my arm in the radiation machine without strain. I've put in a call to a physiotherapist whose office is not far from my house and is on the PMH list of recognized practitioners. I hope to start working with her soon.

Much love to all of you,
Kip

Two New Looks...

Hi Friends,
Many thanks to Cressida Heyes for these two new looks. I'm kind of keen on the second one...maybe it's time for me to have a whole new look.
I have learned more about what's happening with my left arm - the bad burning feeling (which sometimes leans into pain) is a result of the nerve they had to cut. So, my arm is communicating yucky white noise to my brain which doesn't know how to make sense of it. It is truly a sensation I've never experienced before. Last night, while trying to get settled in bed, there wasn't one position I could find that would give me any relief. I managed to fall asleep (thank you pretty little pills) then woke up in the night, as I often do, on my back like a stranded beetle with no way of sitting up without pain. I keep my ipod close so I can just put on my Dalai Lama audiobook. Last night he was telling me about how to manage suffering. It was actually quite helpful, then we did a meditation together. So the beetle didn't move until morning when I found my arm on the bed and without pain. A brilliant moment. It didn't last long, but we now know it's possible to not be sending those messages, so I'm more hopeful.
Catherine continues to improve so we are more hopeful on that front as well.
Much love,
Kip

More appointments...

Hi Friends,
I've had two appointments over the last two days, the first with the radiation team yesterday, and the second with my surgeon today. The appointment yesterday had its challenges: it was strange going to the radiation area of the hospital to start a new treatment (aren't we done already?) and I got into the CT scan clearly before I was physically ready to do so. I didn't realize that they would need my left arm above my head so they could map out the area to be radiated (I was told it was to see where my organs were so they wouldn't radiate them by mistake). It took three technicians to get my arm in place (they place it in a little arm stirrup) and ohhhh was it sore. The lead technician was a bit of an ass, and commented that it was too soon for me to be there (buddy, I didn't book the appointment!), asked if I was in physio, and generally made me feel like I was way behind where I should be in the healing process. Before I left he gave me four tiny tattoos that will help them isolate the area to be radiated.
So today when I saw the surgeon, I went over my progress with him. He didn't seem concerned, but noted that I should be better healed before I start radiation so that I don't re-injure my shoulder each day I get into the machine. Also, I have a buildup of fluids on my left side, and those fluids need time to disperse. If radiation starts too soon, the fluids will have a harder time moving to new areas. So he told me not to rush things. Of course, the radiation oncologist wants me in as soon as possible so they can do their 'cleanup'. I feel strongly that I have some healing to do before I can manage the next step, and I don't want to add more injury. So I might need to argue for more time.
I also asked him about my other big concern, the discomfort under my left arm. It's pretty intense sometimes, hard to sit it on anything, or even have clothing touch it. It feels like a really bad burn. He said this was not atypical, and that it can take up to a year for that feeling to go away. So it's good to know that it's still in the normal range, and that it will just take time.
Catherine is still sick, but feeling a bit better today. There's hope that she is winning the battle with this virus and will be feeling more like herself again soon.
With much love,
Kip

Balancing celebrations and Catherine's flu...

Hi Friends,
Well, it has been a week since my great pathology report, and I wanted to show you some of the celebrations from last week. Julie came home the first day with a cake (omg, was it good), and Hellen came with balloons (and bubbly...thanks, Hellen). Giselle also came by that first night with treats and ice cream, so I felt very celebrated indeed. If only Catherine had been well it would have been a perfect picture.
I'm in for a CT scan today - they want to know exactly where all of my organs are to they will know where (and where not) to send the radiation beams. This seems like a very good idea. Mostly, it's making sure they can avoid the heart and lungs as much as possible. If it might hit the heart, they will teach me to breathe so that I can lift it up and take it out of danger. They have warned me several times that there might be some contact with the lining of my lungs, so I'm prepared for that (I don't like it, but I'm prepared for it). Bobby Noble is picking me up and taking me to the appointment so I will have company today.
Much love,
Kip

Following Ruth's Suggestion...

Hi Friends,
Here are Julie's and Patty's interpretation of Ruth's suggestion for chia hair. Well done, and I promise if my hair comes back green, I'll seriously consider these options (I think I saw the second version on an early episode of *Star Trek*.)
After straining my triceps and biceps in my left arm (from overstretching), I have backed off a little bit and the arm feels better. Apparently, I needed rehab from my rehab. How Type A is that? The discomfort otherwise continues (nerve pain, numbness, raw soreness), but I think it's all normal. I meet with the surgeon on Tuesday so I'll be able to discuss my symptoms with him then.
Today Barb came to get me and we went to see *Barney's Version,* which is playing down the street. I really enjoyed the movie and it was a great distraction from my discomfort. Take it in if you get a chance.
Love,
Kip

Befriending a Body

Dear Friends,

Today, my nurse Christina came by to take off the final bandages. She called to say she would be by in about 20 minutes, so I took some Tylenol (just in case) and jumped in the shower to allow the hot water to hit the steri-strips. There were probably about 25 strips to be removed, and they didn’t hurt when she took them off. Then she cleaned me up and complimented me on my scars – apparently, they are quite impressive.

I stood in the living room after Christina left, looking at the gentle snow falling outside, and decided to go into the bathroom and take some time to get to really look at my scars, I don’t know, say hello to them. It’s not that I am sorry to have lost Tito and Blanket, it’s just trying to make sense of this new shape, one I never imagined for myself (I have imagined several shapes and configurations for my chest, but never this one). It’s also the process of looking at your body after it has been so banged up with the area around the incisions hard and numb. It has clearly needed to protect itself after the insult of surgery. Who can blame it?

I think we are going to be friends.

Then, this afternoon I was reading a blog Catherine told me about last week. It was written by UBC professor Mary Bryson who was diagnosed with breast cancer and had a bilateral mastectomy a few years ago. It’s a very good blog where she asks a different set of questions about the politics of breast cancer, treatment, etc. (anyone interested can read it at http://brys.wordpress.com/). It’s so interesting that I encountered this blog today: in one entry, Bryson cites Anne-Marie de Grazia, who also had the bilateral procedure and writes of her experience:

“I now look at myself every morning, every evening, naked, in the mirror, equanimously, as I always did, and what I see is not a maimed body. Some might call this denial. Yet - I look at this flat expanse of my chest and I do not find it ugly, or repellent. My face, somehow, "goes" with this chest, there is a harmonious continuity from my face all the way down my body. There is, in all human beings, when they are bare-chested, a touching symmetry between the eyes and the nipples, and this symmetry, of course, in my case, is gone. Yet, and this may sound scandalous, absurd, or even mad: this breast-less body is not devoid, in my eyes, of a certain pure and abstracted beauty. If it is indeed monstrous, it is so in the manner of some magical, not quite human creature - a fairy, a mermaid - an Amazon.”

It was meaningful to read another person's experience in the post-surgical mirror, today, just after I first encountered my new chest for the first time fully exposed. While the fairy, mermaid and Amazon don’t resonate with me, I might let my imagination play with the “magical, not quite human creature” part. Now that could be healing and even quite intriguing...

Here are my wishes for Catherine to feel better soon, and for everyone else to get home safely on this snowy winter day.

With much love,

Kip

Possible Hair Styles

Hi Friends,
Contributors have begun to suggest possible hair styles for me. Thanks to Patty for sending this first option. I promise to take it seriously if I come back as a blond.
This morning I woke up for the first time since the beginning of August light and optimistic. Then I moved my arms and sat up felt the pain as a result of the surgery. It is now the hardest pain thus far for sure, but I'm just assuming it's all part of the recovery. I have a whole new appreciation for what lymph nodes do.
A reminder to love your lymph nodes.
Yesterday, Catherine had a scratchy throat and was tired, and today it has turned into a real cold (or flu). Her energy is zapped (this makes me think it's a flu) and she's feeling pretty crappy.
In good news, I have new eyelashes. Yes, eyelashes! Last night, while getting ready for bed I looked in the mirror and--gasp--I had four lines of veeeery short little lashes coming out (they look extremely tenuous, probably wanting to make sure there's no more chemo coming their way). It was great that they began budding on exactly the same day I found out that, without any doubt, I would not be getting any more chemo (always a possibility until you know the results of the pathology report). I got an eyelash curler a few weeks ago so I can train them to come in properly. It will probably take a few weeks before I need it, but I have it at the ready.
Much love,
Kip

A Great Pathology Report

Dear Friends,

This morning I went down to the hospital for a meeting with the radiation oncologist. We figured we would be setting up a radiation schedule and talking about the therapy. Instead, the oncologist's fellow, a lovely young Irish woman, came in and told us she had the pathology report from the surgery and that it was good news. Would we like to hear it? (Um, yes.) From all of the samples examined, which included both breasts, 29 lymph nodes from under the left arm (ouch) and several from under the right arm, there was no remaining cancer. None. They could see residue from where the chemo clearly had killed the cancer cells (scar tissue and other indicators to suggest that there had clearly been a battle), but no cancer. They will still do radiation as there might be stray cells that were not removed. But I can't tell you how much more optimistic this report makes me for radiation, and for my long-term prognosis.
So it has been an emotional day, full of gratitude and happiness, and tears. There's still a road ahead--I'm recovering from surgery with nerve pain and quite a bit of discomfort, and 5 weeks of radiation after that--but it's the best news I could have received.
The chemo worked beautifully after all.
Tonight, Giselle came with ice cream (remember that blog entry a few days ago about wanting to eat as much as I want?) so she, Julie and I had dinner with a few glasses of wine, and Rocky Road Haagen Dazs (with the hope that the rocky road is behind us).
I will sleep incredibly well tonight.
With much love,
Kip

Kip's Hair, Before and After Chemo

Hi Friends,
Be careful what you wish for! I asked for Elvis hair when it started growing back in, and viola...well, almost. I now have short hair around my head, but hey, it could still do this, or it could come back and look as it did in the original photo in 2008. Thanks to Julie and her Photoshop skills for creating the Kip/Elvis montage.
This, of course, could become another question for all of you. Do you have another idea for what my hair could look like? Do you have any experience with Photoshop? If so, feel free to take the first photo, replace my hair with your idea for a new look, email it to me and I'll post it to the blog. Or, if you have another photo of me, you could use that instead.
With much love,
Kip