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