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