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