Auntie Cake's Shop

Green Dreams

2012-01-26T16:53:00.001-05:00

I have been dreaming of greener things today, as I wobble my way through today's issue - too much pain meds, which are giving me the shakes and make me feel something very close to being stoned. Given my druthers, I would rather be in pain than live in this miasma of medication.

It feels like I am walking through thick soup, my fingers sausage-like in their inability to grip. Dropped a few things along the way these past few days. Not nice. I wanted to be clear out and away from the last chemo to see if it was the chemo or the meds setting things akimbo. I now know it's the meds. The doc is going to lower the dose, we will monitor, and check in again on Monday. I am sure the symptoms will abate. You become attuned to your body in strange ways throughout this process.

Mentally, to cheer myself, I have indulged and allowed myself to think beyond the 3 month mark, as prescribed by Dr Warr. I am thinking of hot luscious summer, looking through a glass darkly, as the saying goes. These grey days make me half sick of shadows, also, as the saying goes. Although I do not have the luscious locks of the Lady of Shallot. Ok, a bit heavy on the literary metaphor, sorry.

In meditation class last night, we did some visualization, thinking of a favourite spot. Specifically, a place in nature. In this place, we sit and meditate. Just being in the space in our minds. When thoughts occur, or "busy" the mind, we place them into a pot in front of us.

I admit, my mind wandered a lot (I am a complete novice meditator) and images of the garden kept popping up, as I visualized myself doing stuff, pottering around - and I would dutifully put them in the pot. But eventually, I succumbed, and let the images unfurl in front of me. I love my garden, and know it's importance and significance to my mental health. I imagined planting seeds, weeding (I love it), doodling about - messing with this and that. As you can see, it's a lot crammed into a small Toronto backyard, but it's bigger than some/most, and we have been very crafty in our use of space.

Verdant veggies in the garden, every shade of green, so lush and lovely as they sprout up beside each other. The lettuce were an astonishing shade of yellow citrine (a GREAT word, citrine, so pretty). I was disproportionately proud to have grown broccoli. The green beans sprang up quickly, and surprised us with their pretty plump presence. My shady backyard, cardinals whooping it up above me...soon, we will be back there again.

Last year, we had broccoli, red cabbage, green onions, leafy and romaine lettuces, green beans, potatoes, zucchini, chard, beets, carrots, strawberries, raspberries, blueberries, tomatoes and herbs. Yes, I am bragging. And I have dreams of chickens too - if the law permits, as we hope it will soon.Mmmmm... fresh eggs. Granted, there was no enormous crop of any of it, but it was not notional, it was real enough for a few meals. And what beats potatoes right out of the dirt, or raspberries right off the cane? Mea culpa, the red cabbage did not make it to harvest. I took out all my anger about recurring cancer on the poor red cabbages and the gone-to-seed lettuce with a big-ass spade. I completely hacked them to bits while cursing my fate. I guess the garden is where the yin and the yang combine for me, and allows for good and bad to commingle, safely, with no harm done to other humans.

But right now, I am just savouring these images, meditating on their loveliness, and looking forward to greener times.

Shrinking...

2012-01-25T14:21:00.001-05:00

GREAT news! CT results are in and tumours are shrinking down significantly!! Dr Warr is very pleased. Me too.....

This is such capital G great news. A huge relief. Chemo sucks, but apparently it works. Thank God for that.

And this from one other mother - cured. Yes, cured of her triple negative. So we cannot give up hope. It is possible.

http://motherswithcancer.wordpress.com/2012/01/25/the-c-word-by-stella/

Glorious Day!

Nothin' but time and thinkin'

2012-01-21T19:38:00.000-05:00

Definition of LIMINAL

: of or relating to a sensory threshold

: barely perceptible

: of, relating to, or being an intermediate state, phase, or condition : in-between, transitional liminal state between life and death — Deborah Jowitt>

from Merriam Webster.

I have been thinking a lot about a lot of things.

I have been thinking about time.

Thinking of this juncture in my life, defined medically as the "liminal" space. I wrote about the Bardo which is the Buddhist term for the place where the spirit goes between lives. But this is different. This is the before the Bardo time. The liminal world is the place between life and death. Waiting to die, but living extremely fully. Now really, are we not all in this space?

This time is where I am allowed bursts of creativity with ample ability to follow through; without the cares of working in an office, working being away from my home. I have worked on projects I thought of doing, but never got around to. It's quite exhilarating. I have been able mess with my photos and drawing, edit my book, cook and bake, and visit with friends over tea or a G/T, and gasp! play Scrabble on a Tuesday afternoon. We had an open house, and people came, chatted, laughed, and hopefully, took some time out of their own liminal time. But given the nature of my live vs theirs, there is a perception I will go first. Maybe, possibly, probably.

Shortly I will spend an entire day on a Monday with two lovely friends to play cards, drink pink wine and laugh, and cry as needed. We are going to Mexico. We are meeting Ken and Rosemary and the kids at Great Wolf Lodge for some cousin time. I am going to see Yo Yo Ma in May - a dream of mine, as I believe the cello is the most beautiful instrument ever created.

I am doing things I always wanted to do, but not rushing about it. I imagine there is a ton of people out there braying with laughter at the picture of ZEN Kate, which I would fully understand. But there is now only time, and I need to rest between stops. I care to rest, breathe, think, act.

I care not for the stupid waste of time shit that bubbles over to boiling point in most people's lives. Now don't get me wrong, we still pay our bills, make sure we pay our taxes, etc. But we don't care if plans get cancelled, dinner gets burned, the burnt out lights don't get replaced for weeks, we run out of milk, or we couldn't park in front of the house.

We have our logistical ducks in a row. We are very much aware of the love we have as a family, and spend our emotional energy wisely.

I have been thinking about my family and friends.

Real, lovely, flawed, human, rich in love family and friends. Those who are afraid of what this will do to them. (I cannot answer that) Those who scream at the top of their lungs as my champions. (I thank them verily) Cooks, poets, drivers, tea-drinkers, steadfast facebookers. (I thank them verily too) Some pull away, some huddle closer. I know I am cheating family and friends - and even more so, my husband and my children. Sometimes, I feel guilt as the person with the cancer. But it is here, it bloomed inside, and I have done everything humanly possible to make it go away. I have plans to send birthday cards to those whose birthdays I know. So tell me. I love my friend love.

I have been thinking about death.

We all die. We all live in liminal time. We should all have wills, and cemetery plots. It makes perfect sense. Hope for the best, plan for the worst - an event planner's creed. I have begun writing lists, notes, advice for the children as they grow - it's called "legacy" writing, as suggested by my psychiatrist. We read books about telling the children, dealing with grief, etc etc. I visit with the lovely Dr.X, my palliative care doctor - who cares about me, and my pain. Apparently, I have lived with too much, and as it affects your psyche, so now I am on pain meds. And whoa, the difference. I am choosing music for the funeral, and thinking of readings, and what food to order for afterwards. It is calming to do so. It helps me immensely, as it is pro-active, and somewhat soothing.

I am at peace, for the most part. I cry a lot. But apparently the release in spurts over time is better than the breaking Hoover Dam approach.

You can see how this would be problematic. The low seep approach is actually better, as all good gardeners know. In the morning is most beneficial, but I can't control that. It comes when it comes. I really have to buy some waterproof mascara.

So, now I am going to stop thinking and go eat. Lamb shanks in a cinnamon, garlic, honey braise with smashed potatoes. Yum.

xo KO

The Problem With Plans

2012-01-19T22:57:00.000-05:00

by Michael

** Tomorrow (Jan 20), Kate has her final "big" dose of chemotherapy. Next Friday (Jan 27), Kate has her final final (small) dose of chemotherapy.

The problem with plans, Owen said a couple of years ago, is that they change.

Well, yes. They do, don't they?

And dealing with change is a challenge for Owen, as it is for all of us, more or less.

So I'd like to dedicate this post to Heiko, who passed away (I choose to be euphemistic) a number of years ago, from cancer in his brain, at the age of four.

His parents took him to the hospital thinking it was something else, but it was the unimaginable. And the unimaginable happened, later.

Plans change.

We are by no means ready to let go of Kate. We are keeping her and enjoying her and laughing and traveling and biting richly into every sandwich.

I was at PMH today, meeting with my psychiatrist, and it was a rich conversation. We are at a rich point in life. One must acknowledge such things. Such opportunities don't come along every day.

I have said to people recently that cancer has made our lives generally better, while also making them specifically worse. We know the value of every moment. When we laugh, we mean it. When we see each other in need, we attend to it. We know no superficialities.

We would like others to know such purpose of meaning also. Hopefully, we don't mean this selfishly, or narcissistically. We are going through something profound; you don't need to share the depths of this experience; but I do think we would like you to know the depth of life's meaning.

It is about sharing and caring and being in the moment, whatever that moment is.

This past week, Kate and I started an 8-week mindful meditation workshop. www.mindfulnessmeditationtoronto.com. And so I found myself in a room with a dozen women, most of whom were there for "stress relief," except for Kate, who told the group bluntly that she had cancer, and then there was silence.

I just said I was there because I was married to "her," pointing.

Ha, ha.

We laughed and a few others did, too. What else is life for?

Breathe, the instructor said. And we did.

In, out, in, out, in, out. Repeat.

Normal stuff

2012-01-13T13:01:00.004-05:00

Normal stuff, I like it.

Today, I got up on time, and made lunches for my kids. I had a bowl of rice krispies. I then dropped off my kids, and went to pick up a car (ok, minor blip - went to the wrong Autoshare car....doh! Chemo brain!!). I then had to scrape off said car, and shovel the sidewalk. I then drove, which is significant, ran errands - pharmacy, LCBO, a quick shop here and there.

Normal stuff, but last week, impossible due to chemo fatigue and pain. What a difference a few days can make.

Also, today I had the opportunity to pay it forward. All the goodness afforded me, with meals, thoughtful kind nesses, paid forward. I got to place a cooler full of food on someone else's porch, with a note, a trashy magazine, candy, and nice hand cream, for their recuperation from surgery (she too has had the scourge, breast cancer).

I am so delighted I get to do normal stuff. Not even a whiff of sickness, or fatigue - no bone deep tiredness. Just feeling ok. Walking in the snow- lovely. Driving a car with tunes blasting - awesome. Chatting with Joe at the LCBO about the new Food and Drink magazine - fantastic.

Pizza night tonight with our beloveds, the Dawson-Marches.

Normal stuff, I LOVE it.

KO

The view from here

2012-01-12T14:45:00.003-05:00

Michael and I have had an extraordinary week. Truly. Beyond the ordinary. On Sunday we bought ourselves a lovely trip to Mexico, Cabo San Lucas, sparing no expense - who gets to do that, really? Feb. 14th to 19th. A lovely spot - Villa La Estancia, warm sunny sand, margaritas, and books, swimming, etc. The view from the beach is a lovely rock formation called El Arco.

Today, we booked another sunny spot - or it is in the summer time anyhow. Norway Cemetery, Oak Hill, Line 12, plot #3. A lovely spot for me and Mike to both rest our bones (plus room for 6 more in cans! if you're interested, gimme a call!! Bribes welcome - not too many plots left - must be willing to be cremated post-departure, just sayin). Of course, we HAD to have the chat about who gets to be on top - Mike beat me to the punch, cheekily unable to resist. There really is nothing like good old gallows humour...

With a lovely view back towards our street, the spot looks through a line of old oaks. Hard by the Vets part of the cemetery. I admit, I thought of taking the camera and doing some goofy stuff, posing, etc, but the weather sucks today, and I thought better of it. Didn't want to get the camera wet. The appropriateness of photographic silliness of such things, well, who cares!? I am free from such burdens as caring about shit like that, unfettered, if you will. I can see Brian and Luc raising their hands to the air in despair at the thought of this! Aaah!

The very practical boy at the cemetery (he was lovely, really, a natural in his job, and so young!) noted the view, and that this is a great part of the grounds. We have often walked through this cemetery, since it is literally, across the street from us, and it really is a lovely place. I used to walk both Owen and Naomi around there with friends, with our tots in strollers.

So boy told us a tale of the fellow who lives on one of the streets nearby, and how he picked his spot between two trees, one with five major branches, and one with two. His house # is 52. Karmic placement? Perhaps.

It feels right, because it is. We now have one logistical issue solved. It is a beautiful spot. I lament sometimes that I am so far from people I have known who have passed on, because visiting them is out of the question. My grandparents (all of them, UK), father-in-law, Gord (Delhi, ON), an aunt, Aggie (UK), and a dear friend John (Ottawa). Leaving Ottawa for Toronto meant leaving him behind and it was hard.

We are thinking of a marble bench - for people to come and sit on and visit. Possibly planting a lovely shrub. (Shrubbery....We are the Knights Who Say Ni!)

And that is the view from here. Not as maudlin as you'd think. Sad, but then, as the boy in the cemetery said, "Well, we all need somewhere."

This Old House

2012-01-08T13:39:00.005-05:00

#20, June 2011

At various times over the last year, Michael and I have contemplated downsizing house. This was so we could enjoy more the fruits of our cash flow - less on bricks, more on experiences. We could get a serious pile of cash for our house in this the Toronto market. It is really too big for four people. You could fit a small African country into it, with room for a despotic leader's palace in the basement, or a Mosque, as the case may be. More on that in a second.

We bought #20 in 2007, shortly after our marriage. After we bought it, friends of mine, Sanne and Jeff, told me they had looked at it in another lifetime, when it was essentially the dump of the neighbourhood, and was fit only for a serious gut job, and rife with all manner of critter. My neighbours still tell me of the cockroaches which migrated when the renos began.

But now it is my palace, my perch, my sunny spot. It has walls that lean inward, and floors that tilt upward, but it is full, and I mean full of sunshine. It is south facing, high on a hill, and I have no curtains - there is no need - no one looks into my house but the birds in the cedars next door, and the garden gnomes in the back yard. And Katie and Don at #22, but they are the very souls of discretion.

Bubbles on the front porch with Granddad, October 2010

If it is sunny out, then it is sunny in. And I love it. This house has become my old friend, and it has kept me warm and sheltered through this entire horror show of cancer. I have a spot, by the front window on the tiny white couch where I sit (as now) and type, read, lie, rest, cry, visit, eat.....whatever I am doing. It looks out onto the front porch, the other essential part of the house for me and Mike - where we often sit in the summer and have an evening cocktail and watch the sun set and review the day. Naomi and I often also sit at the table and play cards, and it is sort of like a cottage in the city. Ok, but bigger. Also, a lovely spot to blow bubbles.

I have lived in a LOT of houses. I mean a lot. By high school, I had lived in several different countries and different houses. But this one, my forever home, has had a veritable life of its own, and I feel its nascent quality. Before we bought, it had been a rooming house, complete with mosque in the basement, and so the story goes, 27 Turks (not sure where exactly that detail comes from) lived here in squalor, with a LOT of cats. Apparently, it was flipped a few times, and then the owner before us took possession. Well, he turned out to be Mike Holmes' nemesis, not for us, thankfully, but for a long line of others who eventually came to our door and told us their tales of woe, including several collection agencies and bailiffs, but that is another story. So, the photo below is the old house, but nobody's home. Beaten up, in need of TLC, and living in a cancerous state.

20 Corley Ave. in 2006, with separate mosque entrance, and old tree.
Nice garden. Not. Sanne took this pic.

I may not have liked the previous owner -cad and gadabout that he was (a lien was attempted on the property the day after we bought it!) - but his workers took care of my baby, and it is a regal and dignified place now. It is cared for, and loved, and lived in. Like a good life. This old house seems to breathe now, with sun shining through. It has children's art, and messy beds, and a lovingly tended garden. It is home. My last home, maybe. It is a grande dame of a house. Billowy, somewhat frowzy, and lovely. We would never move from here. Nothing would compare.

In his book Enjoy Every Sandwich, Lee Lipsenthal talks about his back yard as his place to meditate, with its palms and pool, and sunny Californian weather and such. His home is his castle, and where he does his heavy lifting thought wise. Mine is here, and I cannot think of a better place for it.

La Grande Dame in 1921, in the mid-distance. City of Toronto Archives.

Triple Negative What?

2012-01-06T22:33:00.000-05:00

by Michael

I flew to Ottawa earlier this week for my Uncle John's funeral. He was 67, husband, father of four boys, grandfather of five, a retired diplomat, and one of the most complex and compassionate persons I've met.

On the plane ride home I was having a conversation with Kate's oncologist in my head. Triple negative breast cancer? What does that mean? It seems to mean that the available treatment options are "negative." Can't block the cancer with estrogen inhibitors, for example.

Incurable? I've spent a lot of time at Princess Margaret Hospital these past 16+ months. There are huge banners promoting a world without cancer. Believe!

I thought, A supposedly incurable breast cancer must be a medical researcher's wet dream. There are tens of millions of dollars being spent on cancer research. Someone must be looking at "triple negative."

What is that anyway?

So today I did what I have been avoiding. I went to Google and typed in triple negative breast cancer latest research. It turns out that the latest research is that there's no such thing as triple negative breast cancer. Just like there's no such thing as breast cancer. There are multiple diseases that produce tumors in the breast. Research (published in July 2011) has identified six sub-types of triple negative breast cancer.

There is also a Triple Negative Breast Cancer Foundation and a Guide to Understanding Triple Negative Breast Cancer.

And a potential treatment ... PARP inhibitors. (Though other research was less promising (May 2011.))

I'm going to paste below an article (from January 2011) from the breastcancer.org website that gives the positive spin of this cutting edge experimental option:

PARP Inhibitor Shines in Triple-Negative Breast CA

Iniparib is one of several experimental medicines called PARP inhibitors. This small, early study suggests that iniparib can help treat metastatic triple-negative breast cancer.

Metastatic breast cancer is cancer that has spread to other parts of the body away from the breast, such as the bones or liver.

Triple-negative breast cancer is:

estrogen-receptor-negative
progesterone-receptor-negative
HER2-negative

Overall, about 15% to 20% of breast cancers are triple-negative. Triple-negative cancers are usually more aggressive, harder to treat, and more likely to come back (recur) than cancers that are hormone-receptor-positive and/or HER2-positive. Hormonal therapy and the targeted therapies Herceptin (chemical name: trastuzumab) and Tykerb (chemical name: lapatinib) usually don't work on triple-negative breast cancer.

The PARP (poly ADP-ribose polymerase) enzyme fixes DNA damage in cells, including DNA damage caused by chemotherapy medicines. Scientists developed PARP inhibitors based on the idea that a medicine that interferes with or inhibits the PARP enzyme might make it harder for cancer cells to fix damaged DNA. This would make the cancer more susceptible to chemotherapy and make it harder for cancer to become resistant to chemotherapy.

In this small, early study, 123 women diagnosed with metastatic triple-negative breast cancer were treated with the chemotherapy medicines Gemzar (chemical name: gemcitabine) and Paraplatin (chemical name: carboplatin). Half the women also got iniparib along with the chemotherapy regimen; the other half didn't.

Gemzar destroys cancer cells by acting as false building blocks in the cells' genes, causing the cells to die as they get ready to divide. Paraplatin weakens or destroys cancer cells by damaging the genetic material in the cells, and making it hard for cells to repair any genetic damage. Gemzar, Paraplatin, and iniparib are all given intravenously.

This study was an open-label study. This means that the women in the study and their doctors knew if they were getting iniparib or not. The women who didn't get iniparib didn't get a placebo (sugar solution) that looked like iniparib. Open-label studies aren't considered as objective as blinded studies (none of the participants or doctors know who is getting the experimental treatment and who isn't). Still, open-label studies are common when an experimental treatment is starting to be evaluated for benefits and safety in people.

More than half (56%) of the women who got iniparib had some response to treatment -- either the cancer went away (complete response), became smaller (partial response), or didn't grow for at least 6 months (stable disease) -- compared to 34% of the women who didn't get iniparib:

52% of the women who got iniparib had a complete or partial response compared to 32% of the women who did not get iniparib

Women who got iniparib lived about 6 months without the cancer growing. Women who didn't get iniparib lived about 3.6 months without the cancer growing (progression-free survival).

Women who got iniparib lived about 12.3 months overall. Women who didn't get iniparib lived about 7.7 months overall (overall survival).

Nearly all the women eventually had the cancer grow while they were being treated, whether or not they got iniparib. This suggests that even though iniparib may boost the benefits of chemotherapy for a while, eventually the cancer becomes resistant to iniparib when it's used with chemotherapy.

Most inherited cases of breast cancer are associated with an abnormal BRCA1 or BRCA2 gene. Women who have one of these abnormal genes face up to an 85% risk of developing breast cancer by age 70. Their risk of ovarian cancer also is higher than average. Some experts think that PARP inhibitors such as iniparib may help treat women with an abnormal breast cancer gene. This may be because breast cancer cells in people with these abnormal genes already have a hard time repairing DNA damage from chemotherapy and PARP inhibitors boost the cancer cells' susceptibility to chemotherapy. Still, this study wasn't designed to look at these possibilities. The researchers didn't screen the women in the study for an abnormal breast cancer gene, though it's likely that some women did have one.

Some of the women had serious (grade 3 or grade 4) chemotherapy-related side effects, whether or not they were treated with iniparib. These side effects included: low white blood cell counts (neutropenia), low red blood cells counts (anemia), low platelet counts (blood cells that help with clotting), severe fatigue and loss of strength (called asthenia), and signs of liver effects (increase of a liver enzyme called alanine aminotransferase). Women who got iniparib were about 5% more likely to have severe side effects.

Other small, early studies have shown that some advanced-stage breast cancers -- including triple-negative breast cancers -- that have stopped responding to standard treatments will respond to chemotherapy combined with a PARP inhibitor.

If you're being treated for advanced-stage breast cancer, you and your doctor may be considering a number of options, especially if the cancer is triple-negative and/or has stopped responding to standard treatments. Treatment with an experimental regimen that includes a PARP inhibitor such as iniparib may be an option if you're willing to participate in a clinical trial. Ask your doctor if there are any clinical trials that might be a good fit for you and your unique situation. Visit the Breastcancer.org Clinical Trialspages for more information.

Frogs die, humans don't

2012-01-04T15:56:00.000-05:00

This is my favourite photo. Nasturtiums in my backyard after rain.

On this, the funeral day for Uncle John Bryson - and one day after the anniversary of our wee Heiko's death - some thoughts on death and dying from an "expert."

Steven Jenkinson - interview

This is such a very interesting interview - a podcast - so there is no visual - where scholar of death rituals and spiritual teacher Steven Jenkinson discusses the myriad ways we ignore death in North American society, and how imperative it is to move from dying badly to dying well. Rather, living well while dying. An excellent and comforting notion.

His basic assertion is that throughout history the vast swaths of migrants of every different origin, who came to North America were / are really running from something - not running to something. Thus we live within fewer original religious and contextual constructs, and are essentially orphans within our own lives, unable to say who our people are, and what our culture is. We have created something "new" and young, and vibrant, and cast off the old ways, which included rituals related to death. We also spent a good deal of time bashing down Aboriginal cultures that embraced their own death rituals.

So, how do we die? How do we live while dying? It seems that when we are dying, we do not have a narrative to follow - there is no construct with forms, and symbols, and models, and it is a time of as Jenkinson says, "wretched anxiety - and toxic fearfulness". Very sad that this is so. And from my own perspective, very much the case. We are afraid of pain. I am afraid of pain. But, more so, I personally am more sad for my children. Because, eventually, they will not have me. But then, Jenkinson points out also we have the ability to live well while dying, perhaps providing as much of ourselves or more for the ones who do not die. (A distinction, this, those who die and those who do not die - as opposed to those who die vs those who are "left behind" - an assumption that the dead have left us, instead of perhaps, gone on another journey. I admit, it makes me happy to think of the people I might meet...somewhere else)

Dying has already begun for us all - as Sarah and I were discussing last night - as we sat with a fine chianti and cheese, after a day of visits with friends, and tears, and love and pain. As Frank Capra says - a divine mingle-mangle of guts and stardust. Every day should be that rich.

I like Jenkinson's ideas very much - that if we live our lives within the realm of "being" - with ourselves, with our ancestors, and thinking of them, and pulling together our thoughts as part of the past, the present, and the future, we can live better while we die. And all of us are on our way, as he says, the only eventual result of birth is death.

My favourite quote - "A good death is a village event." A wake - a party - a symbolic event. There will be open bar at mine, I promise you.

And the title is from the interview, see if you can find it. Interesting ideas about kids, teaching and death.

XO KO

The New Year's Resolution.....

2011-12-31T19:42:00.001-05:00

Crazed kayak boy

At Watercress Pond

Sunny Kate

Sunny Mike

Cards on the deck of the Palatial Cottage

Uh oh, not a Habs Fan!!!

It is December 31st 2011. I am very happy to see this year end, and feel reflective of its ups and downs. It began inauspiciously in chemo sessions, and ended pretty much same. I will have undergone approximately 9 months of chemotherapy by the time the last needle goes in, in addition to massive life and body altering surgery, day surgery twice for various ports and lines, and 5 weeks of daily radiation. Forget how many CT MRIs and other pokey tests where they make you fast and drink barium.

More importantly than these, we also spent 3 lovely, imperfectly fun family and friend filled glorious weeks at a cottage, two weekends away at Watercress Pond cottage with my lovely Michael; We also tripped to Ottawa, and reconnected with our good friends. And in between all that I watched the children grow daily, visited with friends, wrote and received letters, wrote a book, went on and off the hooch as stomach could take it, gardened (somewhat lighter than I ever have before), read what feels like a thousand books.....sometimes I cooked, but mostly, I was cooked for.

Here are the things that stand out for me in the midst of all this:

First, the kindness of others - people dropping off lovingly prepared meals- not just food - but meals - separated into packages and absolutely child friendly, a cleaning lady paid for (Venice, a lovely kind woman, who gives me a hug every time she sees me, unconcerned about the state I may be in, even in bed, she drops right by and chats first); friends taking the kids for sleepovers, driving to birthday parties, well....the list could go on. Thank you for all your kindnesses. Namaste.

This year I have been surrounded by people who love me. I can honestly say I have no idea where this army of loving souls came from, other than at some point, our paths crossed, words were exchanged, in many cases bonds were instantly formed, and lasted. I feel so very lucky about this. And it makes me happy to know that my children will know these people too, and feel the love.

On that note, Michael and I have been contemplating a new year's resolution (yes, only one) to host weekly or bi-weekly drop ins / open houses for a few hours on a Sunday afternoon so we can connect, even if it is quickly and somewhat esoterically. I hope sometimes we will be flooded, and I suspect sometimes we will get one soul lost wandering over from Woodbine and the TTC. Nothing fancy, and it will be catch as catch can, take us as you find us, and have a cuppa tea, glass of wine, if we remember to buy it, and chat. Some times we will cancel. Sometimes we will be over the moon. Sometimes groveling. But we think this will be a nice way to connect. If you are in town for something, drop by. Our door is always open. Borrow a book! More details on this to come.

One thing I will say about Torontonians, they are not droppers-in. It is most definitely a culture of "book me three weeks from now, and for 2 hours, because then we've got...etc etc." I have even been told that I can't be "fit in" for a visit till the next month. I was a bit astonished, but then if you're living that life - the one that is in a perpetual state of overdrive - you would not find it so strange perhaps. My world is more circumscribed, but of course, happily, most other people's aren't.

I love the drop in. 5, 10, 15, 30 minutes of catch up time, where our friends can stop, breath, share, listen, or talk. My life is more than this cancer, and I want to be there for my friends too. I want to hear about your lives, otherwise I feel left out. Mundane details are the new black, my dears.

So here is our/ my/ the new year's resolution: see my people.

Happy New Year, with love, Kate

(AND SEE YOU SOON.)

Refreshed

2011-12-26T16:46:00.001-05:00

Naomi on her new best friend, Twister.

There really is nothing like getting away from routines to change your state of mind.

We had a lovely Christmas at Deerhurst, which was a present to ourselves, with nothing to do but swim in the pool, check out the arcade, play ping pong, and eat, read, and relax.

At one point, all four of us were reading in the hotel room, waiting for dinner, with fancy drinks, and calmness all around. It was a lovely moment. And something likely never to occur at my house over the Christmas period. With nothing to do but relax, you tend to well, relax! We all took deep breaths, and settled in for 2 hours of doing exactly what we wanted to do. And then we ate like pigs. Oy! It was good. More on that in a sec.

Santa found us, and managed to sneak in after 12:00 - after Owen finally got to sleep. Naomi took over the overly large linen closet as her personal hidey hole - with the iPad and the Smurfs movie, all the cushions, and a new doll; Owen read, and played his favourite computer game; Michael read, played Risk with the IPad, and I went for a walk, took some pictures, and also read with a nice glass of chilled NZ wine. The kids spent 2 hours in the pool each day, frolicking with other kids - some from Germany, and two special friends from Oakville. They swim like fish now, so this means I can lounge and read and glance every so often at them. Heaven.

We had planned on dog sledding and skating, but neither were available. However, Miss Naomi got to do her pony care and ride session, which she absolutely loved. I also had a very rejuvenating pedicure.

It snowed on Christmas day, light fluffy flakes. That was all very nice to look at through the room window - thank you very much. It was all about hunkering down, and getting cozy. I LOVE the smell of freshly laundered hotel sheets, and expensive hotel toiletries - small luxuries.

We ate a tonne of good food - the buffet was spectacular. I filled my plate with smoked duck in a gorgeous red wine reduction, lime poached shrimp, pickerel in creamy caper sauce, smoked salmon, PEI mussels, and seafood ceviche. There was local beef, poultry, and maple syrup sauces, luscious cheese cake, and a gooey fruit and chocolate fountain...and I could go on and on. And we drank deeply of the prosecco on offer. The Cremant d'Alsace, Brut was particularly nice.

It was all so lovely, and so NORMAL. And refreshing for the soul.

To carry within us faith

2011-12-19T01:45:00.002-05:00

I cannot write this week or go without thinking of the passing of several notables from cancer.

Christopher Hitchens, writer and a right socially argumentative bastard. A loss for us all, the writer, polemicist, and relentless pursuer of troglodytes of any colour, race, creed or persuasion. He hated tyrants. He hated the left as much as he hated the right, for their own self-assuredness.

He died of cancer. As did Vaclev Havel. Poet, dreamer, somewhat right bastard too.

They died of cancer. Both were brilliant. But really, in this world, I cannot help but feel there are so many more out there just like them - brilliant, profound, worthy, creative, literary giants, worldly personages dying of cancer. And then, the rest of us. Schlepping along. Doing our thing. Dying of cancer. It happens. I know for whom the bell tolls - for countless others, millions, myself included. And each is worthy of love and praise, and weeping at their demise. Thank you Mr. Donne.

The fingers of cancer move through the ground [maybe] to touch, reach, sigh upon us. Some are afflicted by it directly, others as collateral damage, others breathed upon vicariously. But it is a scourge. It is not however, a plague. Dr. Buckman was clear, it is not a plague. It is a clever foe. But it cannot be breathed in, or shared by touch. It requires no facial masks, germ barriers, or iron lungs. Some forms will get ya, some will not.

The newest addition to the coterie of doctors I visit with is Dr. X. She is a psycho-social oncologist. Her job, essentially, is to walk me to death's door as painlessly as possible, and learn to greet it face on, providing me with comfort, support, and information along the way. She has made it clear, crystalline, that there are two kinds of breast cancer -

a) the kind you get which will not kill you - hormonal therapy can assist - aka. hormone receptor positive, +++ positives, the kind which is killed by lumpectomies, mastectomies, radiation, chemo, etc - you walk away, and move on with your life.

b) the kind which metastasizes --- ie triple negatives, to other parts your body, and will in due course, take your life- but essentially lives in you. It attacks either the liver, the brain, the bones or lungs, or all. There is no cure.

There is life to live though, and this is the key, this is no small thing. It's not about the dying, it's most definitely about the living left in you. What have you got to bring to it? What will you do with it?

I have b).

There. It is out there. Done and dusted. Now we must deal with it. If you are with me on the journey, it begins now, and we know not the end destination or time of arrival. But you are welcome to join in.

So far, my liver has taken the hit for the team, and the chemo is working to shrink it as fiercely as possible. It has responded fantastically well to chemo. But the rest of me has been dragged through the metaphoric mud - beaten up, blasted, rotted through with dreaded poisons. We will seek second opinion, in the hope of other options. And pursue avenues that will allow me to endure - without too much of a horror show. It is easy to understand emotional polarities, at this juncture.

Kate: I can't wait for the chemo to be over.
Michael: I don't want the chemo to ever end.

But the course thus far is this - once the chemo is done, we then move to the living with it phase. For as long as we can. And as best we can, given the trials and tribulations of the day. Because that is all you have.

Cancer "prognoses" no longer exist in specifics: terms of 6 months, 5 years, 2 days - since the world of research, medical trials, and sheer crazy ass hope has replaced the window of longevity with a series of loose "timeframes"

a) years to months
b) months to weeks
c) weeks to days
d) days to hours

I am currently in a) years to months. This could mean anything. I could be here for Owen's university graduation or not make it till the fun fair in May, who knows. And thank God I don't. Because, really, it does not matter. You should enjoy "every sandwich." It is irrelevant how you reach the end, because, we all will. It is not up to us to know when. We need to leave something to blind faith, in this overly tech-ed out and "results-based planning" oriented world. [A stupid government term, signifying nothing].

Here is where it matters to believe. Have faith, not in miracles, but in life itself as a series of beautiful things, and moments, and each other, and yourself. And know that Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me...Trust that whatever comes will come and you will face it with grace, and love, and be true to yourself. You will find a path. Be at peace with your life. Show the world the outward love you feel inside. Kiss, hug, cuddle. Tell your truths. Love your people. Repeat.

Decorate gingerbread, sing carols, rip presents open with abandon. Don't save the paper. Drink deep of the wine. Don't give a shit about stupid things. Repeat.

And don't tell my kids. We have not walked that path. It is still too far away to contemplate for now. perhaps when we move from years to months, to months to weeks. Who knows. I don't. But I carry within me a deep faith it will be ok.

Merry Christmas

with love, Kate

To life

2011-12-05T10:28:00.004-05:00

to Life!

With kind permission from Gabrielle to republish Xo TKO

The cab driver, the convict and the director

2011-12-02T17:00:00.001-05:00

Today I spent the better part of my day at PMH. It is now become part of my life, and as such is a safe place to wile away time. I see others there who mirror my condition, while others fare worse, others better. It is a wide wide sea of faces. Today though, three faces stepped into the forefront for me. One world famous, one most probably invisible to the world, and one, well, one whose presence made a difference to me, anyhow.

The first of these faces was tall, lean, with black but greying corn-rows and a stubby ponytail. More significantly, clad in an orange jumpsuit and prison issue runners, shackles and cuffs, and two armed guards. Our eyes met in the elevator, me on my way to 2nd, him on his way to 4th. Now, for the rest of the non-cancerous world - the 4th is the CHEMO ward. This gentleman was on his way from his prison cell to his chemo. My heart broke for him. Not a soul to support him but for his two armed guards. Not a warm bed and a hand to hold when he returns to his cell. Imagine that. The elevator was silent, but for his guards, chatting to him. "4th floor, we know, we got it. You let us take care of this."

I had 3 appointments - one, perhaps moot, in the circumstances. 9 am - my radiologist, saying - well the radiation worked, and see you in a year. I sure as hell hope so. A year is an incomprehensible lifetime away. Appointment took all of 5 minutes. Next appointment, 11:00. Blood letting.

So, of course, I chat up my nurse re prisoner - and she says "yes, he always causes a stir". he is haemotology patient. The cancer in his blood. He comes to her for bloodletting too, meaning he has a PICC line or some such device. Tricky in a prison I bet.

I am rarely alone in this place. And today I am because this is all routine stuff, or so I think, more on that in a minute. So I sit in my favourite spot, outside the BC clinic, watching the foyer, and the elevators go up and down, up and down. Watching the musicians arrive for their 7th floor atrium performance (spared the torture of the main lobby "entertainment" for a change....my GAWD they are always so bad!), bald people, wheelchair bound people, an army of volunteers, doctors, nurses, a flood of human misery and hope, walking by. Up and down.

And then, somehow, I find myself walking. To the 4th. To search the 4 different chemo wards, a place you would normally only drag me to doped up on Ativan with my brother and travel scrabble. But today, I was looking for an orange jumpsuit. I wanted to sit and talk to that man, and provide some solace, conversation, warmth. Something. Anything. Now, I know what you're thinking - how bourgeois. But cancer is a world flattening playing field evening disease. Compassion is critical. I wanted him to know he is not alone in his journey. I wondered if someone from John Howard was there with him, to get his popsicle, a cool glass of water, maybe do the crossword, or get him the paper. How simple are those human acts, to show care? I somehow doubt they happened. Which makes me very profoundly sad.

The second face I saw today was perhaps at the complete opposite end of the spectrum to Mr Orange Pants. A world famous Canadian director and his wife walked into the BC clinic. It took me a sec to realize, ok, maybe a few minutes, that indeed, I did not know this person, but he was famous. Not just well known, but famous - in a Hollywood way. I will not say who -that would be a terrible incursion on their privacy - and frankly, it's nobody's business. But object lesson: no one is immune. The invisible to the highly visible. An even playing field. The same requirements for compassion and care.

Now, the third person who crossed my path today, who from the moment I stepped into his cab made a difference, was my Beck Taxi driver. Normally cabs make me queasy - too much sound, too many lights, bad driving, and annoying illegal cell phone use. But this guy - when I said Princess Margaret Hospital please, please, let the games begin - he said, I was a patient there, 5 years ago, colorectal cancer. And we began a journey of chat, personal and profound. It was about children (his much older), cancer, our lives, and what is there in front of you. We laughed a great deal, and it was very very real. He told me to have faith, and believe in miracles - and why not? why the hell not??

So I will not go down the path today of what ifs, whens, or hows and the details of the medical conversations of my day. Two doctor's spoke to me today, one bearing a glowing torch of faith and hope. The other not so much, and with a heavy heart. Empirical vs Spiritual. Both took the Hippocratic oath. Both practitioners in this fine province, where I am grateful to live. My soul is beyond fatigued. Beyond the pale.

At the end of this day - I am only happy not to be shackled, nor famous, nor frankly, a cab driver. I am happy for this moment, this day, where, while I never left the building, but somehow, the world walked by.

The gift of Breakfast with cancer...I mean Santa

2011-11-27T12:49:00.001-05:00

Yesterday was the Breakfast with Santa at Norway School- an annual tradition which I know requires a small army of volunteers to produce - done selflessly by many purely for the delight of the children.

Face painting, crafts, sausages and pancakes, fruit, yogurt, and Timmy's coffee. Nicely done. And of course, Mr and Mrs Claus. This year the addition of have your picture taken with the Big Man.

Owen was an elf, as were many of the grade 6-ers and I was delighted to see, some returning grade 7-ers from the neighborhood, directing people, serving food, handing out candy canes and gingerbread to the little ones coming off the stage, selling tickets, and doing crafts with wee ones. A real community event. It was really lovely. Thanks to the army. It was great. Owen got himself out of bed at 6:55, like some internally wound up alarm clock, and got dressed, walked over to the school by himself to help - as I sleepily closed the door behind him. A moment of parental pride, my wee boy, growing, and participating, getting his hands dirty. Enjoying the whole thing. Two years ago, the entire thing was verboten territory - no way was he going to that breakfast thing - a terrifying prospect - Santa, loud noise, food he didn't want to eat.....essentially afraid. Naomi had her face painted, ran around with her friend Ella, sat with Santa, and generally was very Naomi like. I sat down and had some lovely conversations with people I have known for years and new folks I have just met, while both the kids did their thing.

My mum asked me today - So, how was Breakfast with cancer..I mean Santa!? It was such a complete Freudian slip which made us both laugh out loud - but it's a good question. For me - the internal and external realities of such events are complicated by the waves of various emotions and physical realities that pass over me. Mostly, I try to be present, and look around, take it in. Absorb the lovely little frocks on wee girls, the general sense of well-being and cheer in the room, and the sheer delight of the event. Notice the many hands, making light work, and enjoying the Run DMC Christmas tunes. Seeing Santa. Mrs. Claus dispensing advice on shortbread baking to Naomi.

After Breakfast with Santa, off to kids' Drama Camp for the last of the year's classes, and a view to what the kids do for an hour or so every Saturday. Improv, basically. Quite fun to watch 10-7 yr olds rolling around - Be an egg!! Be an egg!! Be an egg!! Lessons there - work with what you have right in front of you - and burst out into whatever you want to be. The grown ups invited to participate, and be an egg, or watch. Boldly going where it is potentially embarrassing to go. In Owen's class - the emphasis is on "taking the offer" - taking the material provided from someone else, and working it into something - as a small group - trusting each other. Again, a lesson. Riff off the world around you, listen, absorb, integrate, trust. Fantastic stuff. Awesome teachers. Wish I had been so lucky as a kid to have such wisdom imparted to me through play.

So throughout all this fun and frolic, I was on a feeling well but dog-tired ride. I have a bad case of the shakes these past few days - low red blood cells, and low oxygen makes for wobblin' pins and shaky hands. Like a little old lady. Fatigued, but brain spinning, encased in a floppy head. It is hard to keep zen when the shakes take hold. I can barely do up a zipper and walk down the stairs.

And as sometimes will happen, tired leads to sad, which then leads to full-catastrophe thoughts, and then around a bend to Oh My God. Oh My God happened about 11:30 pm. I had tried to bust out of it earlier, the malaise, and we went out to dinner - but it clung. It's a tough one to shake. Full catastrophe thoughts include - I don't want to die, I am so angry, I hate this cursed disease. By 11:30, the shakes had morphed into full body wracking sobs. Release. Catharsis. Resumption of breathing. Oh My God fading back into the shakes, and finally, sleep.

Today is another day. Less busy, but no less shaky. But the body wracking sobs have expunged some of the toxins, and the horizon is different. I picked up the Globe this morning, with a view to a cursory read - and found practically the entire front page addressing my current life - breast cancer (screening controversy...I have serious doubts about the experts and their advice, thinking cynically, it's all about money - and it shouldn't be - it's about life and death, and getting it early, and yes that might be hard to go through in the early stages of what ifs and potential false positives - but it sure as hell beats the firm positives), and a critical care piece.

Around the world in a day - from the North Pole, to rolling around like an egg, and off to the end of the earth, feeling like I am about to fall off. But, in reality, back to the living room couch, and here to the blog. Trying to riff on what has been given to me - as my teacher Sharon Bray indicates -

War teaches us, as cancer does, that there are no guarantees in life. What really matters is that we find the gift in those precious moments that life gives us. As Stafford reminds us, life is not easy, but there are always moments we can cherish.

It's the way life is, and you have it, a few years given.
You get killed now and then, violated
in various ways. (And sometimes it's turn about.)
You get tired of that. Long-suffering, you wait
and pray, and maybe good things come - maybe
the hurt slackens and you hardly feel it any more.
You have a breath without pain. It is called happiness.

William Stafford, "the Gift"

Week of Sleep

2011-11-19T10:06:00.001-05:00

by Michael

What's the update? Lots of sleeping has been going on around here.

I took Wednesday to Friday off to be with Kate, and promptly joined her in slumbering through most of Wednesday. I hadn't realized I was so tired.

Today, the kids have gone with their father, and will be coming back dinner time Sunday. So we have two more quiet days here to continue recovery.

The triple-whammy of side-effects (fatigue, nausea, headaches) have all been present, but the latter two have been pretty well moderated by medications. Kate's appetite has been consistent, but not normal. Small snacks, relatively frequently. Lots of fruits and veggies and fibrous cereals. Some of you will see where this is going.

The fatigue is omnipresent. It has been a week of sleep (and she is sleeping now as I type this). Kate and Buzi are competing for the title of Champion Snoozer.

That's all of the news from here. Zzzzzzzzzzzzz.

(Kate's back at PMH next Tuesday for Part 2 of Round 3 of chemo.)

Chemo Cycle #3

2011-11-15T20:41:00.001-05:00

by Michael

Kate wanted me to let everybody know that she is okay. The PICC line that was inserted yesterday in her upper right arm worked like a charm today for the first of the doses of the chemo cycle #3.

Kate's hemoglobin was low last week when she visited PMH to see the oncologist, Dr. Warr, but they checked it again today and it was good, so the chemo went ahead.

They used the PICC line to get the chemo into her and it was easier than a one-time catheter. Less pain afterwards, but Kate also feels like the drugs are working faster. She said she feels like she did on Day 2, but she only had the chemo this afternoon.

Perhaps this means the side effects will wear off quicker? We'll see.

Speaking of side effects, the doctors seem to have found a good pharmacological intervention strategy (read: good drugs) to keep Kate generally pain free and eating. Tonight, in her words, she feels, "stoned."

She ate a plate of green melon and prosciutto. Sweet and sour. (Appetite: check.)

I'm home from work for the rest of the week to look after her and rest (clean house, laundry, etc.). I'm sure Kate will provide another update soon.

We are well and grateful to all looking in and watching over us. Thank you.

Report cards came home tonight (to daddy's house) and Kate talked to the kids. Both did well and were chatty and growing up so darn fast.

One of Kate's latest books on the go: Full Catastrophe Living. One day at a time.

Salut.

Ah, the lovely feeling of a crisp, fresh pile of books

2011-11-14T08:23:00.001-05:00

Thanks to Peter and Gayle for their lovely gift of written words. I picked up a real stack. They sit next to my new sunny recliner, now in the bedroom. (I was serious about no more fetal positions). I will perch, sit, curl up, but not curl inward, with a good book.

New books - awaiting cracked spines:

The Sister Brothers - deWitt
Half Blood Blues - Esi Edugyan
A World Elsewhere - Wayne Johnston
The Amazing Absorbing Boy - Maharaj
I am Half Sick of Shadows - Alan Bradley

YaY!!

The metaphoric cancerous body

2011-11-11T08:42:00.001-05:00

and the body, what about the body?
Sometimes it is my favorite child,
uncivilized. . .

And sometimes my body disgusts me.
Filling and emptying it disgusts me. . . .

This long struggle to be at home
in the body, this difficult friendship.

-- Jane Kenyon, "Cages"

I am reading several books simultaneously right now. Ondaatje's Cat's Table - a lovely book. Rife with metaphor and lyrical but not obtuse prose. I am also reading Susan Sontag - Illness as Metaphor and I return back to my old friend Dr. Mukherjee, Emperor of All Maladies. It is a good mix - while none of the characters of the Ondaatje book have cancer, there is death, renewal, and lots of water. I like the water thing. History and historical fiction awash in a sea of illness rhetoric. And speaking metaphorically, I feel engulfed in a wave, no, a tsunami of hope today. I see a bright, shiny lovely future. I see the slide show of faces, and I am now in them - making rabbit ears behind everyone's heads. Maybe it was the lovely lunch with Peter and Gayle, or the wonderfully moving Remembrance Day service at school and Gus's moving speech about his grandfather or Robyn's photo of her grandfather, pickin' and a grinnin', or the sound of my children laughing and playing nicely together. Actually, who cares?! Hope is my bottom line these days.

My assignment this week is to move, and contemplate this body while it moves, and work those movements into thoughts. That is to say, do something physical, and then let my mind wander. Well, physical for me is tricky - not impossible - but tricky. Does walking up the stairs count? It does to me, as the heart races, and I have to sit down. Low red blood cells means poorly oxygenated blood, ergo ...tired. Now this can and often does lead to new levels of concentration on the physical side, and places me deep within myself to consciously slow my heart down. But I suspect this is not the point of the exercise (pardon the pun). And I also know, rather than suspect, this will pass, and the blood cells will regenerate and bloom in me like big fat red poppies in June. I might even burst from their volume.

When I was a little girl, I loved dancing. I took ballet classes, and "jazz" dance through high school. Thriller by Michael Jackson still makes me stand up and shake it, since we "the gang" created a spectacularly similar to the original version of our own for the VC Jubilee, Spring 1984. I marvel still at his genius footwork. When Owen was a wee toddler, we three (yes Lawrence, the beans are spilling) would gallop around the couch in circles, to various songs from ABBA, Dancing Queen, being the obvious one. It was fun, liberating, and a lot of laughs.

And now, I can on the odd day, find myself doing pirhouettes and plies, and lifting the leg to the kitchen counter (aka the barre), and bend to its will when a good song comes on the radio.[Of course, there are no windows that face any neighbours, so it is a guilty pleasure without fear of obvious embarrassment.] Nothing short of miraculous, given the bone degeneration in my lower spine, and the stringy tendons which are pulled taut like rubber bands down my left arm - shrunken in fact, from lying in a fetal position for weeks on end as the chemo works its magic. Tingling when stretched my ironically broken nerves - it's called flossing, the loosening motion of unwrapping caught nerves.

But limber I appear to be, and will remain with the help of my team - Caitlin, my physiotherapist, who is coolly insistent on pushing me to wellness through sheer blinding pain, and Amanda my massage therapist, who is familiar with the capillary issues of the immuno-suppressed. A massage can cause bruises, it's true.

Susan Sontag elucidates poetically on the relationship of cancer and metaphor, and shines a BIG-ASS uncomfortable spotlight on the ridiculous but ubiquitous language surrounding cancer (she's pissed!) - cancer only as necritizing, a long downward painful and horrific spiral to inevitable death; a sickly pallor and wasting away; or as the physical manifestation of some earlier deeply-anchored spiritual wrong, or slight, or anger bottled up.

That, frankly, is all bullshit, and I humbly concur with the lady - while temporarily put out of commission physically, I appear not to be wasting away. I am in fact, perhaps at my best precisely because I have cancer. I now know the value of this body. No, I am not running alongside Kristine in the next NYC marathon, and I doubt I will make it down the toboggan hill this winter, but I am fit in ways unusual to the typical cancer myth-typology. I am not a bald grey-skinned hollow-eyed zombie. No offense intended to bald grey-skinned hollow-eyed zombies everywhere. Sometimes, it is true, I resemble this. I tire easily, but this will pass. I have short hair, but this will grow. I am cranky and sarcastic... ok, well, that probably won't change. As Owen said to me at dinner last night - "Mummy, you're very unorthodox." And planning on staying thus!! Chris doesn't call me TKO for nuthin. I am in fact, more engaged in my physical life now, that ever before. I get it. I feel every knot in my muscles. I know my G/I tract with a level of intuition which could be considered extra-sensory. People tell me I don't look sick, or as sick as last time. I attribute this to the fact that I still have hair, and my nails are glossy and firm - thank you Ellen for the OPI colour - nice. I also wear a lot of red, and pink. [I said to some girlfriends today, before "pink" meant breast cancer, it meant, you know, PINK, and was my favourite colour. Now I call it salmon or fuschia. No offense to Pink BC campaign supporters everywhere.]

If I were a dog, people would say I have a shiny coat and a pink wet nose. My tendons, sinews, veins, and this old liver of mine are all pliable enough to regenerate and become my new body. I just have to learn to not lie in a fetal position this time around.

So this difficult friendship is moving to the next level. Cancerous body parts aside, I work towards achieving a clearer version of myself. Kate 3.0. It is scarred, battered and tired. But it's pink and it floats.

xo KO

Sleigh bells ringin...

2011-11-10T09:32:00.001-05:00

Ah, creating a lovely new memory for us all to cherish. A fun-filled real wintery Christmas.

Deerhurst for Christmas is booked! So exciting to do something completely different. Have booked 3 for dogsledding, tubing, 2 for pedis at the spa, skating, 1 for ponies....and I don't have to cook a THING!! (Tracy at Deerhurst Event Booking is a perfect fit for her job! Wow, can she chat)

Santa, please remember to drop off in Hunstville for Owen and Naomi, ok?

So I am still hoping someone (ahem, Mum) makes a lovely rich M&S fruitcake, and (ahem, Dad) makes sausage rolls and mince pies....but otherwise, I feel quite delighted to not be doing the whole month long plan and cook fest.

Merry Christmas. Ba ha ha!!!!

Yay yay yay

2011-11-09T14:58:00.003-05:00

YAY YAY YAY - GREAT NEWS! Tumours are melting....to quote my doctor - "You've had a fantastic response from an anti-cancer perspective" - blood counts are low, but not enough to stop chemo....so i must rest, and keep my energy for the big hammer hit on Tuesday. Did I say YAY YAY YAY!!????

And my new nickname - Cancer Bully....scaring the wee residents with my forthright nature, and kick the cancer in the head attitude....

YAY

Water, water, everywhere

2011-11-08T17:45:00.003-05:00

There's gonna come a time when the river's gonna rise up high
There's gonna come a time when the river's gonna rise up high
And if I can't swim, I gonna find my way to fly
(P. Reddick, Hook's in the Water, Villanelle)

An overwhelming series of days. Washed over with pain. Beaten into physical submission. Time has ground on, and the sheer physicality of this disease has worn me to a nub. It makes every nerve ending raw. It wearies us all, frankly, and the vale of tears flows frequently around here, as our souls bridle at the rottenness of our luck. It sucks to be sick all the time; to be unable to move from fatigue and pain. It sucks to watch it, witness, be part of it. It sucks to have your loved one unavailable, on many levels, because of cancer.

I had a note from a friend today in which she made a request. She asked me to delve deeper. Tell what I find. Go down the path to the inner mind and pull it up at the roots. Shake it out, and see what falls to the ground. This particular friend never asks that which cannot be borne. She is the only person I ever really speak of the spiritual life with, I would say. So, here goes.

My spirit is sad, bludgeoned by reality. The spirit knows there is am army out there to protect it, but it is still reeling from the what ifs, the bad news, the sheer monumentality of this thing, this cancer. I too am sad. I am bone-tired sad. My heart breaks daily, when I go along the mental paths, threads of feelings, dropped and picked up at various points along this journey. The thoughts which plague me the deepest - of which I can barely give voice to - are the ongoing threads concerning my children. I feel so angry and bereaved on their behalf, spinny with fear and grief, panicked about the million mundane details of a life perhaps not to be witnessed. I find my inner voice catching, as I begin a proto-thought - I must remember to tell Naomi about X, or make sure Owen knows how to do Y - this week I fretted that his current grammar and punctuation skills would not get him through adequately to high school. Will I be there? Should I tell him the secrets I know about girls, so he is armed, in advance, in case I am not here for him to weep to when the certainty of unrequited love hits? I want to tell my children all the things I need them to know, from me, with my voice. But when? Now? What if I die and don't get to it? It prays on my darkest fears of death. For me and for them.

Then there is the mental path that inevitably leads to death itself. And the lingering question of spirituality, in the face of it. Am I afraid? Yes. And what exactly am I afraid of? Of a prolonged painful horror my loved ones have to witness. There it's been said. I said it. I am afraid. I am scared shitless. I know, thank God that I am not alone, and others share my fear. Natural really, as we are all afraid of what we do not know. Do I contemplate finding a place of religious haven in this my time of need? Well, yes. I do. I was raised a Catholic, and it fed my needs as a child. Not so as a grown up. The rites of passage are very clear in the Catholic faith - absolution, forgiveness. But at this point, what do I believe in? How does one go about a spiritual or religious reclamation? Excellent question. And I promise to give it a LOT of thought. I am envious of those with strong religious grounding and tenets; these are the times when they sure do come in handy.

Humans are amazingly resilient, adaptable. I have done a fucking great job of adapting to this cancerous life - I live, eat, breathe, sleep as myself - there is no pretense of anything, really, anymore - it is an intense self-tutorial in real time. Michael is bone-weary but iron clad - moving it all forward without complaint, but often angry with this deal - and there is an immense sadness, too. The kids are steady in this storm, with an amazing capacity for beauty and love and cheer. Lawrence too, stalwart, there for us, keeping things moving along.

And mostly, we keep on moving. Even if you are lashed to the deck, breathless in the wind, and blinded by rain - eventually, the ship you are on moves forward, and the seas calm (ok, that metaphor is stolen right directly out of the Cat's Table - M Ondaatje). It is unsustainable for anyone to live in a maelstrom. You drown. And so we rise to the level of the flood water, and help each other out, and fly.

Emily Dickinson wrote...

2011-11-02T19:49:00.001-04:00

Pain has an element of blank;
It cannot recollect
When it began, or if there were
A day when it was not.

It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.

And she also wrote:

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

I love Emily. True to life itself, and its weird and macabre and joyful mush.

The way you wear your hat....

2011-11-01T19:30:00.003-04:00

Nasty nasty day. Chemo was a bust - literally, they blew a vein in my hand, which means hideous pain.

I kinda lost it after that - and got all sad and maudlin, bawling. Really nice for all the other poor souls, white-knuckled in their chairs; like getting stuck with a crying baby all the way from Toronto to Ottawa. Yipes.

I know it's stupid, but it felt a bit like letting down the chemo patient team - like that famous Tom Hanks line "There's no crying in baseball!" One lady - all four paws in bags of ice, and two bags of poison to go...another gentleman, stoically sucking it in. But you know, sometimes, you gotta let it all hang out and cry at the pain.

But Andy calmed me down - nothing like a warm hand to hold and a cold compress. And then we played possibly the worse game of scrabble ever. Embarrassing.

But I came home to awesome mail for Sylvia and Tiina - ye olde friends from Ottawa- and wow, the difference it makes. Words cannot describe the up after the down.

Love in a padded envelope. Huge love. Yay me. Lucky me.

And here is the message, in case you missed the nuances, it could be tricky....Fuck Cancer. Wuhoooo!!! Perked me up some - enough to sit up and take some pics!

xo

The Many Seasons

2011-10-31T10:10:00.000-04:00

Apple and crabapples, Watercress Pond

I find fall a disconcertingly melancholy time.

I am an enormous fan of spring and summer, hot, bright, and full of promise. I associate summer with strength - perhaps because we do most of the [literally] heavy lifting - landscaping, gardening, hauling our bikes up the 26 stairs from sidewalk to house...in this season.

This past summer, I was strong, and getting stronger. I was looking forward to the future, and planning, thinking, re-jigging, re-thinking. All done either in my backyard, an oasis of green leaf, small bug, and dappled sun or on that brilliantly sunny dock in Muskoka, cold pinot gris in my hand.

Fall - with its evident decay, messiness of leaves and darkening days makes me sad; as Kate Bush says, it make me feel like an old woman. This may be because for the second fall in a row, I am facing a large obstacle, a behemoth - like l am looking a thundering fast-descending twister straight in the face.

Or perhaps, more quietly but more sinister, I feel like Jane Eyre at the doors of Lowood Academy, but I am Helen Burns not Jane Eyre. I wish to God that there was not another long bleak winter ahead of me. Last winter, I barely left the house - the cold cuts me to the quick, and hurts the arthritic bones. But I (we) have become close to being expert in the simple act of being. Lying. Sitting. Thinking. Or not.

This is the season of our consciousness, a three week season. The three-week chemo cycle of our life has resumed - although now there is more chemo, less down time. Someone asked me in the schoolyard today if I was off work. I said yes, but thought - no, actually, the work is ongoing, as I have mentioned before, this is my new job. And the job has a season unto itself: the one of endurance, contemplation. Endurance is the in-between season, like Edward Gorey cheekily says - the day after Tuesday, and the day before Wednesday.

I waffle between putting the cancer in a box, and moving around it, respectfully admitting its presence but resisting; or conversely, allowing it to penetrate, seep into all things. I think the jury is out of what is best, and I stoutly refuse this time to read anything related to cancer, so there will be no professional opinion provided here to either confirm or deny. I imagine though, there are links to the "seasons" a cancer patient goes through - survivorship seasons [their term not mine- still trying to find the appropriate moniker].

According to a 2009 article in Cure Today, Kenneth Miller, MD, director of the Lance Armstrong Foundation Cancer Survivorship Program at Dana-Farber Cancer Institute in Boston, described four distinct phases or “seasons” of survivorship.

Acute survivorship: when a person is diagnosed and treated.
Transitional survivorship: when celebration is blended with worry and loss as a patient pulls away from the treatment team.
Extended survivorship: includes those who are living with cancer as a chronic disease and individuals in remission because of ongoing treatment.
Permanent survivorship: people who are in remission and asymptomatic, or,
cancer-free but not free of cancer because of chronic late and long-term health or psychosocial problems. Others may even develop secondary cancers related to cancer treatment, or develop second cancers not related to the first cancer or its treatment.

I suspect the "put it in a box" notion is #1, and 2-4 are the steeped and infused notion of cancer. I think I am somewhere between 2 and 3, seasonally. Does that make me a winter, or a spring? And what colour is my parachute?! Sorry, hard to resist such an obvious line.

Today is Halloween. I love Halloween - While my mum did her very best to provide costumes (boy, she can sew!) generally, I grew up in a house that was hostile to the notion of reams of small children roaming the neighbourhood begging for candy from strangers. It is an odd concept, but as I got older, I recognized that Halloween allows grown ups and kids to do the same thing - have fun, no holds barred, no behavioral strictures -and get a shit load of candy at the end. Decorate with abandon. Laugh out loud. Scare the crap out of the kids you don't like in your neighbourhood. Chat with the neighbours, between hordes of kids descending on you, bags wide open. Some neighbours pour you a glass of wine [or pour straight into your cup, for those of us that travel well] as you walk around -very civilized here in the Beach.

Naomi is going as Selena Gomez, all sparkle and shine - with of course, the requisite all access backstage pass.....[in a fit of busyness, uprightness and yes, boredom, yesterday, I conjured up said all access pass, thinking, who the heck is going to know you're Selena Gomez!? now she has photo id to flash] and Owen is going as a soccer player. Daddy's house is decorated, and candy will be dispensed. I will sit on Lawrence's porch, talk to the neighbours, eat candy, and listen to the ghouls and ghosts. The neighbour down the street, whose kids are much older now, still gets a huge kick out of being Frankenstein, and hiding behind the patio furniture....then RAAAAARRR, out he comes.There are mixed howls of fright and screeches of delight.

I met some of my dearest friends at a Halloween Party, in the early 1990s. Chris W was a large Scot - kilt and all; Sherry was Marie Antoinette, with a lovely macrame wig; Diane was a bee; Kristine (my entree into this new group of lovely people) was a "Toasted Western", Marc was the Eiffel Tower (as only a 6'7" Frenchman could be), and I was a "cereal" killer. It was a seriously fun time. A season of love and friendship.

And so, we sally forth into the Endurance Season - just follow me down Diagon-Alley.....and we'll see you there.

Post Chemo Round 2

2011-10-29T18:17:00.000-04:00

by Michael

Kate started round 2 of chemo this past Tuesday. Her doctor gave her some new meds to counteract the side-effects she experienced during round one (nausea and tiredness), and to a large extent they have worked.

This week Kate has been less nauseous than she was last round, but she has been probably just as tired. The fatigue is a result of low red blood cell count. This chemo really whacks those.

So, on the whole, we count the past couple of days as good. Kate's friend Val has been here from England this week and has been an engaged companion and helper. We have benefited from and appreciated her help very much.

Hello to Ian, Angus and Sarah! Thank you for lending us your Mum!

As per last time, there's not much more to say. Our days are quiet. Kids are coping well, and we are living each day as it comes.

Thank you also to those who have been contributing through Team Kate and helping to feed us. We appreciate all of you so much.

Team Kate

2011-10-24T22:49:00.000-04:00

Michael here:

A friend asked me for the address of Team Kate, and I couldn't immediately find it, so I'm posting it here for everyone so it's easy to find.

Team Kate! (click here) [you'll need to create a ID for the site]

Rituals

2011-10-23T21:00:00.002-04:00

I have signed up for an online writing tutorial through Sharon Bray, a writer and teacher at Berkeley, called Writing Through Cancer. Reminders to write, and gentle suggestions of restorative topics related to wellness. Incredible. Life is so full of these wonderful little surprises, like this course, and the people who make those connections and enrich our lives. Thank you Simona for showing me this.

Wellness, and contemplating it, is nicer than bleak, and I feel I owe it to myself to focus on the positive, and leave as much of the bleak in my wake. Hard to do. Kind of like Mental Olympics. So, I try to write the bleak out of me, then focus on the positive. Last time I was able to write more during my chemo, this time not so much, and so as I lay there, I write in my head. I store images, snippets, and hope somewhere in there they stick, and that I will remember, and watch them emerge from the fog.

And my assigned task today: Write about a ritual. Something that matters to me that I do often, and provides healing properties.

What matters most about a healing ritual is that it is something that gives you the space or quiet to replenish yourspirit, a time to listen to what is in your heart and mind.

So, I write. Writing has become one of my rituals. I ask the children to give me my privacy, right there in the middle of the house. So far, so good. I do not want them to read this till they are at least 35. It allows me to vent the vitriol, and then some, and then try to find a path through to the good. It is mentally soothing to type, even though it actually hurts - the repetitive strain injury I now possess and the trapped nerves from the mastectomy smart. Even so, it's better than not doing it.

For example, I wrote a post on Friday, and while the news from Dr Warr was excellent, he cannot even feel the liver - somehow, I was deep in a dark canyon, and felt myself clawing at its walls, and thus the post was bleak. [I did not post it live]. But I had to get it out of me, and onto the proverbial page. I think perhaps it might have been the palliative care discussion at the hospital - which per se, was not a bad, sad or even vaguely negative experience; in fact it proved very enlightening about what it really means - caring for the infirm, rather than just the dying part [which I firmly believe I am not]. Pain management, psychological care, and other types of help for family members who need it; comfort, really.

It was more the shock that at 43 I would even have to utter the word palliative. It conjures up images of bed-ridden decrepit sick people, and the smell of pine sol and urine combined. Ok, am I wrong? I think not. However, reality was an incredibly compassionate nurse and doctor. Complete information package. And also, feelings of overwhelming helplessness and deep sadness at this new twist of fate.

That is why I was feeling bleak. That is why I write. My ritual - the written word as emotional exfoliation.

I need to embrace the chemotherapy as a cleansing, more than a poison, because it will save me. Yes, I can appreciate Weibo Ludwig's reticence to participate in the traditional treatments of cancer, but with respect, I am not 69, I am 43, and I am unwilling to take such risks. I have ways to out the poison, and release it to the universe.

This is one way to out the poison.

xo KO

A beautiful day

2011-10-16T22:19:00.001-04:00

Not much to say tonight, except that it was a beautiful day - spending it with loved people, being loved, and feeling present in each teeny moment. There seems to be no bigger picture anymore, but a series of bright and dull pixellated dots; each one adding to and changing the previous, making a fluidity of colour, light and dark. It was a day of gradations. I hope they all are, since it seems clearer, really.

I find myself entranced with the minutiae of my life. The new haircut, sparkling t-shirts for Naomi, perfectly roasted chicken, a lovely soft smelling bar of soap, the guilty pleasure of the open house for the fabulous house you will NOT be buying, the fantastic sound of these awesome new headphones as I listen to Billy Joel [old stuff - not that pop crap from the 1990s and after. The real soulful piano-man.stuff]. The stuff of [my] beautiful life.

I see on Facebook a friend far away contemplates purchasing a lovely little yellow houseboat. I chime in - DO IT. Because, because, if you are here, then you see that that is the thing to embrace - the choices, mess, the life right in front of you. Just DO IT. Sorry, cliche. But I want to scream it out.

When I was a teenager having sleepovers in my friend Lisa Duval's basement in the early 1980s, we listened to a very short list of 45s over and over and over, crooning along, and being very ridiculously romantic. She's Always a Woman by Billy Joel was one of the hits. I recall having very intense feelings about the person being sung about - she was strong, determined, a bit of an enigma. A bit of a bitch. Not always that nice. But she got the job done. And here was this mournful lovely man singing her praises. Sort of. Not exactly an ode to the perfect woman. I wanted to be her. I wanted to be so loved, but allowed to be pretty much an imperfect creature; as we all are, really.

Now at 43, doing this ride all over again, I know I am. I am so loved. Life is an imperfect creature, but it was a beautiful day.

xo KO

Upright

2011-10-13T19:56:00.000-04:00

Hi folks, Kate here.Bedraggled, haggard, but kickin around. I wore clothes other than pyjamas too - no wait, that was yesterday.

Today the roller-coaster ride took a deep dip, and was not good. Unpleasant. Physically renting asunder stuff. It is a humiliating physical experience, or perhaps, I should view it more as humbling.

Yesterday, there was no need of roller-coaster metaphor, and it was a good day all around.

Stephanie is here (my sister, from Raleigh, NC, leaving her own life behind for an entire week- karmic debt to universe paid in full) and has been an unbelievable help. Holding my hand, wiping a tear, making me laugh, taking the kids to the dentist....the list is too long, and I know there is a high price for this much coveted visit on her part.

And also, once again mercifully, the list of people is long, who lovingly and graciously, generously, provide for me and mine, on so many levels:

Food - ok, my friends can cook!
Love - in ample amounts, at every turn
Thoughts, prayers - in person, over the phone, internet, in the mail....
Mini-visits - really, the only way to describe the lovely little drop ins, check in calls, messages. I really appreciate it SO much. I feel the love. It's awesome.

When I feel super crappy, I roll a film I have made up in my head - simple really, all of you out there, each one waving and smiling at me, each on your own little screen shot. It is a sunny bright day, and you are back-lit by sun, in a lovely green space. There is a breeze in the trees behind you, and you look straight into the camera, and give me your best. There are some goofy grins and some shy smiles. It helps me through some dark spots, this film. It has endless frames of delightful countenances.

So, no more chemo till the 24th, and hopefully lots of rest and feeling ok in between. I swear, I feel the tumour is smaller today.

xo KO

Short update

2011-10-08T18:55:00.000-04:00

by Michael

Today is the forth day after Kate's chemotherapy session, this past Tuesday. She has been "on schedule;" that is, as predicted by the doctor: tired and nauseous.

She has been in bed virtually all day, every day. Sleeping a lot, except for today, when she didn't nap, just rested as we tried to find some food that would agree with her. No luck. Mashed potatoes seemed to be the best. She's also drinking lots of water (and getting bored of it) because she needs to stay hydrated.

So it is slow going around here these past few days. Not much else to report.

The second half of the first chemo round is this coming Tuesday. It is a smaller dose, I understand, than the one last week. The three-week cycle is chemo (big) on week one, chemo (small) week two, no chemo week three. Repeat six times. Adjust as necessary.

Post-Chemo Update

2011-10-05T10:07:00.002-04:00

by Michael

Some quick facts for folks:

Kate went to PMH yesterday with her brother Andy. They met with Dr. Warr, her oncologist, in the morning, then Kate had 4+ hours of chemotherapy in the afternoon.
The doctor has scheduled Kate for 18 weeks of chemo (same as last winter), but it's a different type and different schedule.
The chemo is still 6 cycles of 3 weeks each, but instead of all of the meds at once Kate gets two in-takes. One yesterday, one next Tuesday. Yesterday's was the big one; next week's will be smaller.
The cancer in the liver is metastasized breast cancer, not liver cancer, and I understand that it is incorrect to say there are 2 tumors. There are cancer cells likely throughout the liver and two places where they are showing up most. As a result, surgery is not considered an option. However, this is the same cancer Kate had last year, and it responded well to chemotherapy then, so doctor expects it to do the same now. After a couple of cycles of chemo, he expects to see shrinkage. There are also a number of other chemo drug combinations they can use, so they have lots of ammunition to use against this thing.
The bottom line, we have every reason to believe in the success of the treatment. It will be a while, though, before we have concrete results.
Some of you know that Kate has been having pain in her back, so there is concern that the c may have gone to her bones. Dr. Warr was reassuring about that yesterday. The tests they will be doing in the coming weeks will check all of that out. Also, the chemo now in her will fight the c wherever it may be.
The bone pain is likely result of all of the muscle stretching and readjustment that Kate's body has needed to do after the stress of surgery and radiation, adjusting to the loss of muscle tissue, etc. She has been seeing a physiotherapist, who has been most helpful.
Side effects of the new chemo? Tiredness and nausea are the primary ones to be expected. And, yes, she's likely to lose her hair again.
This chemo affects the red blood cells, so we need to be cautious for anemia. (Last year, it was the white blood cells that were more affected, and so risk of infection was higher then, and lower now.)

Kate is in good fighting spirits and we are very aware and grateful for all of the connections and support people have shown in the past couple of days. This is a rapidly evolving situation and we are focusing on the basics.

Which includes, in a few minutes, going to watch Naomi run a cross-country race. The doctor's advice was to keep life as normal as possible. Amen.

The real journey

2011-10-03T18:39:00.001-04:00

I don't have a lot time since the kids are at the park with Lawrence and Uncle Andy, running off their endless energy - spinning, reeling with the new bad news. I found out this morning that the cancer is back, in my liver. Metastatic breast cancer - two tumours, 11 cm each. Same shit, different place. I begin a radical hammer like chemo tomorrow, so if you are the praying type, bring it on - and pray your asses off I make it through. The irony of this past weekend's run for the cure as I sat having diagnostic imaging done is not lost on me. We are stunned, bewildered, messed up. As Wendell Berry says: It maybe when we no longer know what to do, we have come to our real work, and that when we no longer know which way to go, we have begun our real journey.

Interesting / not so very interesting questions

2011-09-08T19:44:00.001-04:00

I realize it is probably a very natural human reaction once some big trauma, event, or happening occurs, and then "ends" to someone you know and the outcome is positive, that the majority around that person want to know - when do you go back to work?

Overtly - the message is positive - you are a capable working person, and thus you are going back? right? resuming normal life, normal circadian rhythms and daily routines. A busy agenda. A calendar full of stuff.However, subliminal in this text is several things:a) you must want to go back to your former working life b) you are capable of doing said work c) and you are willing to provide information on above - to anyone who asks...

So far, it is the number one question right after - how are you - when i see people after a long period. They know the treatment outcome, and that i am still standing, but are oblivious, thank God, of the longer term bigger picture stuff. And really, why should they be?

A recent article on what happened to survivors of 9/11 bears similar witness to the fact that once the [literal] debris is cleared, there is an expectation to move on. But 9/11 survivors are find it hard - they make massive life altering career moves; they divorce; they re-marry; they don't know what to do.But what if you can't / don't know how to move? what if the [figurative] debris is still there, and lies before you at every step? A typical reaction from people caught in a war zone. Post-traumatic stress.

With apologies to Dr. Buckman re his recent article on Jack Layton, but for cancer patients, it is a war zone, and you must outwit and outlast your foe. Of course, you are not a lesser being if cancer takes you down. Cancer is a cell-destroying machine. But you do wage war. Even if you are unaware of what that means while in the trenches. You do your best while in the thick of it, but it is shit luck what side you come out on. You dodge the bullet or not. But what it means comes home to roost when the immediate threat is gone. If you are still standing, albeit, raggedly, and with fewer working parts - then there is the vast gaping hole of the future. Really, what matters? money? job? self-fulfillment? Artistic pursuits? paying the mortgage? seeing a shrink?

I have learned, perhaps most significantly, that we are in control of our own minds, when needed. We control the way in which we deal with bad news. Not the news itself, but our reaction to it. I am also opening the door to the idea that the life we lead provides us with signs - signals - of where we are swerving off course, health and life wise.

Michael said to me that when he met me, I was working valiantly towards self-sustainability, doing work I did not find fulfilling, and trying to provide for my kids single-handedly, perpetual motion and positivity.

All true.

I have been in a vortex of movement, change, stress, and whatever since about, oh, 2001. So, lying in bed last night, I thought - ease up, listen to the message. Words told to me by a million souls. I have chosen, seriously chosen - after weeks of self-flagellation and remorse, to say - fuck it. I will not think about work or anything else until the parts of my body that hurt on a daily basis do not do so anymore; or until I can get through a day without a nap; or when I am weaned off pain killers / sleep aids / nerve pills.....

Essentially, when I am ready.

L'Anniversaire, le cottage

2011-09-05T12:50:00.002-04:00

I have not written in over a month. I was living in a state of grace in a calm, lovely place, far from home. It was a gorgeous spot, just north of Hunstville on Lake Waseosa. Ah, le cottage. Rest. Dark night, stars. S'mores with whipped cream. Loons. Serene. Off the grid. Ok, so satellite, and phone. But no internet. Amazing how quick we are addicted. But with 17 guests over 3 weeks, and campfires, canoeing, kayaking, we were distracted enough. ;-)

For some reason, I expected it to be a painless experience. But (here's a shock) as it turns out, the pain followed from Toronto, and laid claim to parts of me in the same fashion, regardless of my global positioning. I think I had expected it to be done by now, somehow, tidied up. To not interfere with my plans, my vacation. Indignation, frankly, that it is not over yet. But this is the old Kate talking, the one who looked for fast, expedient solutions to problems. Well this one is not a clear cut do-the-right thing fixer upper.

This next phase - a seemingly long path to recovery - is rife with indignities. Menopause, a short short fuse which could blow at any time, digestive troubles, and then of course the pain. Why do they not tell you about the long term memory of scars? I walked around holding onto my scar, regardless of my own location: grocery store, dock, historic village. Keeping me all pulled together.

Sept 2 was the 1 year mark of when I found the lump. I am still reeling from that discovery. The fear it left in our hearts over the labour day weekend last year it still resides - and can choke us both up. It has left a dent in our faith, I think. A fear to be hopeful, A fear of what next. It was also our 4th wedding anniversary on Aug 24th. We went to a lovely restaurant with the kids in Gravenhurst, where we ate local fish and beef, and enjoyed each other's company in "fine dining". Kids got all gussied up. Nice. Only 4 years though, it seems an eternity ago. In a good way.

We watched a french movie last night - Little White Lies, excellent. An ensemble cast, with some amazing acting. One character - well, he is wound tighter than a coil. I recall feeling like that at many points. The movie is about their vacation to he south of France while their friend lies dying in the hospital. I felt for them each, but at the end - one of them says to him - you always said life is for the living. repentance, forgiveness, living through the awful things.

So here we are, back in the land of school, work, living day to day. Keep moving forward.

Life in the slow lane

2011-08-08T19:14:00.000-04:00

Today was a day of ebb and flow, loud voices (me, of course), whispers (Owen cheating at Marco Polo to the chagrin of his sister), hot, cool, all manner of easy polarities. We did swimming lessons (both wee fish doing very well) read books, watched TV, crashed lego starships, hung from the monkey bars, drew pictures, gardened...and this is the slow lane. These lazy days of summer are full, even when it is slow.

I chatted with my new neighbour Christine tonight, with her baby Charlie. He is lovely, chubby and smiley. I could eat him on a cracker. She had the "OMG it's 6 pm and I need another adult to talk to" look on her face as she wandered up and down the sidewalk. Me, I used to sit on the porch, willing Lawrence to come down the street...please, please come home NOW. NOW. Ok, NOW. New motherhood is a serious thing. We talked gardens, house renovations, whether we actually liked motherhood sometimes, etc. Christine asked me how my recovery was going. Astute question. Not how are you? But how is your recovery. I was impressed.

Over the course of the summer I have had friends come and go through Pearson - to foreign parts - Holland, UK, and two of them to Italy, both back now, and trying to "get organized again". How easily this becomes our reality- to get back onto the treadmill....

We had planned on an Italian vacation this summer, too. We had even sort of started planning crossing paths in Europe with one of the friends- meeting up and vacationing together. But instead we go to a palatial [really, there is no other word] cottage in Muskoka. We have friends coming. We have plans to go to a "fancy" restaurant in Gravehurst - for fine dining with the kids [www.northinmuskoka.com]. We hope to pedal our legs off in the 4-person pedal boat. S'mores. We fully expect "plays" and skits every night. We have a ton of games. There is no internet.

The "fine dining" required two things: a) online menu review - Naomi - mains - fish, with chocolate creme brulee- Owen, steak frites, and ice cream) and b) a review and selection of several choices of outfits with jewelry and purses for the Divine Miss N. Owen got new chino kecks and a clean polo shirt from Old Navy. Excellent. Busy busy busy here at #20.

You know, we really had no fucking clue what was going to happen to us, to me, in 2011. We took a safer, closer to home approach to vacation- who knew whether it was gonna be life support or physio?! Not us. Although, the vacation in and of itself was never in question, but where, how, what shape would we be in, was a free for all. We were scared to even think of it, actually. But Michael sent me a link to a rental, we sent a check, then it was done.

I am so so so glad that we have taken this path. Italy would have worn me down to a nub.

And in the days approaching, as we send out emails with our #, and pack stuff up - me and Mike are planners - we are delighted to be able to go, share, experience, eat, drink, enjoy. Slow is good.

Quietude (except for the jays)

2011-08-01T11:51:00.000-04:00

Here I sit, in my oasis, the backyard, and the only sounds of humanity are air conditioners humming and an occasionally loud motorcycle from Woodbine. ALthough, I admit, I fully expect Neighbour #1 to yank out some manner of noise making tool. It is almost too much to enjoy, this quietude.

The mulberry tree next door is awash in squirrels, birds, and coons - even at this hour. The clouds behind me are black, the sky in front of me is blue. It is 28 degrees, in the shade. I have wee tiny ants running through the keyboard, between letters, exiting at space bar.

I look around and see plants I need to move for better sun / shade, and I am enjoying the cool breezes across the yard. I hear the wind in the trees, and a painted lady flits by. I can hear a bird I am not familiar with, fighting for sound wave space with those crazy jays,and the less frantic robins. I wish I had better eyesight, or binoculars.

Two weeks till the cottage. The slow preparations begin - recipes to pore over, things to pack.

I had a visit with my Registered Massage Therapist, lst week and the news was tough. I admit. As alluded to, lymphedema has arrived - it is the swelling of an area where there are faulty / no lymph nodes present. I have 12 out from my armpit - aka axilla - and only 1 had cancer.This is good. However, that I now have no nodes there is proving tricky.

I would describe it as constantly having a half-inflated kiddy-float under your arm. Your arm does not quite touch your body. The thing is, it never goes away. The best we hope for is that it does not get worse. Here is part of the list of things I need to do / or not do in order to remain sttus quo:

don't

do repetitive work with your left hand - ie lots of typing(ack!), vacuuming, exercises that repeat...
don't go out in extreme heat
do't go out in extreme cold
don't shave your arm pit
avoid trauma - which includes blood withdrawals, blood pressure taking, injections, scrapes, cuts, nicks, bug bites
avoid sharp instruments with left hand - ie knives
do not cut cuticles
avoid prolonged sitting or standing

do

moisturize arm daily
manually drain nodes daily
wear gloves and long sleeve shirts to garden, wash dishes
carry an emergency First aid kit - with antibacterial, polysporin and bandaids at all times.
elevate arm whenever you can.

So.....we shall see how this all pans out. But right now I think it is getting too hot for me out here!!! and my arm hurts from typing...haha

I guess the next hour will be enjoying the great indoors.
xo KO

Baby You Can Drive a Car

2011-07-26T09:47:00.000-04:00

I went for a drive yesterday - to Dundas, about an hour away. To visit my brother and folks, currently renovating various house parts. My meagre offer of garden work more for my own personal gratification and physical therapy than thinking I would actually contribute. But I brought supper...??

I have not driven a car further than to Loblaws since, well, last September. Driving, like everything, is more complicated with one breast. [Also, with one arm leaden down by pain]. Seatbelts cut right across the wrong spot. Can't wear the Aynsley faker yet, since the burnt skin is still there, and lymphedema is present too -my new friends. Burn and Bloat.

I was alone, which is rare. I was cranking bad 1980s tunes. Also, rare. About 20 minutes into this drive, I was sweating a bit, and worried. Radio news said High UV, and I had no sunscreen on, sitting in blazing sun driving west. This puts the fear of God in me now, a burn. More parts crisped up. It's Pavlovian, but in a bad / sad way. I feel it deep in my bones when I see others abandon themselves to the sun - and its power to crisp. I want to throw blankets on them, and plaster then with block.

All this sounds probably so ridiculously small and insignificant to those unencumbered in this way - both the car and the sun thing. Perhaps there is even a bit of "enough already" going through your heads now. And I do feel a wee bit embarrassed - but this was a triumph for me - driving two ways, gardening in between.

Wee steps. Wee baby steps. Repairing. But baby, I can drive a car.

How does it feel to be free?

2011-07-15T12:45:00.001-04:00

This is what the lovely Dr Levin at PMH said to me, first thing, on my arrival at my 4 week post-all-treatment appointment. A really sweet and kind man.

It had not been verbalized yet by the medical professionals in m life- free from cancer. Wow. I know it is true, but the truth is sinking in VERY slowly.

Free.

And so to the business of healing - working on appropriate chemical mixes that do not contraindicate each other for long term health, anti-oxidant vitamins, pain meds for the scar (yes, it hurts to touch), and exercises for the lymphedema (swelling in the arm and shoulder).

I got a minor cut on my hand the other day getting my bike out of the shed - and immediately my body's lymphatic system went into overdrive. I am lucky, Dr Levin says - that it did not require antibiotics - I should always have them on hand, just in case, he says. No cuts, abrasions, bruises to the left arm - forever. There is now nothing there, lymphatically, to absorb the infection. It as morphed [even for Naomi] into Mummy's cancer arm.

But I am free from the BEAST.

I am free.

The business of getting well

2011-06-27T14:42:00.001-04:00

Today was the first week day in oh, ten months, where I had nothing to do related to cancer.

I awoke, dressed, got the kids to school, and promptly went back to bed.
How awesome. How beautiful. No TTC rides to PMH for zapping. No 3.5 iso, gantry up max, 11 cm. covering and clearing. Bing bong bing bong. Zap.

I have a darkening burn on my chest, brown, which may even turn black. But it is the last and final assault. Word to your mother - don't suntan. It will get you. It hurts when it burns. Seriously. And stop smoking.

Now I focus on recovering from, well, all of it. My brain is at about 55% capacity. My body is sore. Doctors says 6-8 weeks to recover from the radiation alone. But the getting well again, to become whole - well, it will take some doing.

My nails are growing out - normal, real nails. All the flaking and chipping chunks are done. I am still in the slow process of losing one toenail, but in the scheme of things...no sweat.

My hair, while currently Annie Lennox blond, I think is going to be black...weird. My Grocery gateway delivery guy, Pete, he called it. I think he may even have money on it. But I will take it any way it comes.

Really, I did not know how this part would play out - worry, fear, what next - but I admit that a part of my brain has blocked out the worry part for now and I am jubilant. triumphant. proud. happy. I want to seize every friggin happy second. It's like (I expect tho have no empirical evidence) crack.

Also, there is a clear vibrancy from the children too - spilling over with good will, humour, joy. They know the ordeal is now over. They feel it in their bones. They see me creeping back to life. They literally covet and grasp, hug and kiss. Some of Naomi's little friends too - they are openly affectionate and concerned, and give me the love every time, every morning, and every afternoon.

I recently took on the Art a la Carte program at school, as therapy for myself - part of my own "back to wellness" program. It gets me up, moving, using my brains to plan and execute an event, even a small one. My mother in law helps, and it is a pleasant if hectic hour of our lives. Imagine, 20 kids, colouring, painting, glueing, creating. This past week - garden tiles. Just seeing the little blank slates turning all shades of colour, and every hue, then Ah! the magic of UV resistant acrylic spray allows their work to glow brightly and remain stable, so Norway school mummies can put them in their garden - ok, it was their idea!? Sorry daddies.

Today I could hear the entire child population of Norway school having their "play day". Games, sports, singing, dancing, silliness. The entire population of 300+ divided into teams - of all ages, with big helping little. All I could hear was glee. [Yes, we live right across the street from the school]. It literally got me out of bed, and over there to witness it. Hugs from the kids. Freezie smiles.

The road ahead - so far, I don't know. I doubt I ever will. But I am right here, right now. It is a verdant bower, if a little "hot" in certain spots.

xo KO

It's Over!

2011-06-24T19:11:00.000-04:00

by Michael

Today Kate had her final radiation treatment, last of 25.

We are both feeling very, very relieved. Like a weight has been lifted.

We do not need to anticipate any more poisoning, cutting, or burning.

Bottom line? The cancer is gone. The "counter attacks" are done.

There is ongoing drug treatments for five years, but the major cycle of interventions is over.

There is only one word.

Hallelujah!

happiness is....

2011-06-12T17:16:00.002-04:00

All my adult life, I have wanted for nothing. No fear of shelter, love, food, etc. But there are desires, wants, that are not part of the ubiquitous NEED cycle.

When my rain barrel was hooked up (by my lovely Michael), and a hook for the hose to rest on (also, by my lovely Michael) came to fruition today - all of its various parts come together, in its totality, I was very very happy. I have always wanted one. It gives such easy pleasure. Capture what is already provided, save it, then share it. A great metaphor. Filling an empty tank, feeding something, free. Of course, it takes work. Rejigging, caulking, hosing. But....

I love my rain barrel. It makes me SO happy. Michael understands this basic need in me.

It offsets somehow the astonishing environmental and eco-footprint of a cancer patient. Human involvement aside, the # of human hours, electricity, nuclear isotopes, electrical energy required to keep me alive, multiplied by an outstanding number of people....it is astonishing, and I bet, dollars to donuts, you would not believe me if i calculated it.

so for now, let's be happy with the rain barrel.

and also, a bouquet to the Wenches of Wheels - http://www.conquercancer.ca/site/TR/Events/Toronto2011?pg=team&fr_id=1361&team_id=38581
God love em. I do. Merci Merci Merci.

xo

The Radio-Active Curve

2011-06-09T13:57:00.000-04:00

This is me. Raw.

Scarred, Burned. But at rest. It makes me very very sad to look at this picture, but also, proud of all I have come through, still standing. I see a roadmap here, to a new uncharted territory.

Radiation is all it is cracked up to be. Hot. Laser precise. Discomforting. Hot. Like a sunburn, but on the inside. Me, in my daily old man attire of big wide hat, flat chest, long sleeved shirts from MB and long pants...well I am not exactly fashionista of the month. But 100% covered from the demon sun.

But this transforming shape is becoming more familiar - regular bodily function resumes for some things - and tweaks are made for others.

I had a dream last night, that I had at the last minute to babysit for and feed my friend's tiny baby - and awoke from the dream - seeking the phantom skin, nodes, miracles, capable of such a feat. No wet nurse here, sorry. It was a slow, burning realization. So final. Devastating.

I have, I think, learned to pace myself better. Please note the adverb. better - than recently. I know that the "rest" has a new and significant place in my wellness path - resting - not sleeping - but being at rest, it works. It slows the mind, the body, and I believe, heals.

I am active when I can be - and rest when I cannot. Radiation provides ample opportunity for fatigue and crankiness. Or that could be the menopause. Or the heat. I don't know.

I had a lovely impromptu chat with my friend Lesley this afternoon sitting on my front steps - talk of future plans (ie A Future) for me, ripe with promise and ideas and elan, exciting, almost too much for this gal to get her head around. People really live out there, think, dream.

Soon, very soon, there will be need of decisions. The enemy will fall asleep, and I will slink away - and people around me with have the faith to carry me through that too.

But now, I need a rest.

Putting Paid - and Paying Forward

2011-05-28T21:46:00.001-04:00

There seems so much to include. I have not avoided this space so much as renewed my enjoyment of my physical space, my very presence in this the land of the well. I feel well!!! I feel it in my bones.

The time between surgery and radiation was very changeable - much to deal with and absorb. Pain, physical and psychic. Massive change. Life altering, life affirming change. Possibility. Renewal. The other side of the coin - fear, cold, and gripping. Tired. Always tired. How will I do it? Can I cope?

Kick boxing. Rogue book club. Hauling rocks in the garden. Like coming back to life one inch at a time.

My body has healed extremely well - the scar is a fine specimen. The prosthetic is workable, mostly forgetable. Unless it's hot, then whew~ mama, you know it ain't real. The hair returns, and is now Annie Lennox bleach blond. Courtesy of L'Oreal. $8.99. It's not like the dye is going to give me cancer ;-)

But I have not posted, because I have not wanted to. My present moment-ness is so lovely, I find myself almost giddy with it. Llike living at MACH 10. Ok, the downswings are as low as the giddy highs, deep trenches. Like in The Hunt for Red October - complicated, twisty, deep, moving blind under the sea (uh, but without Sean Connery or Alec Baldwin). thus is the life of the freshly-anointed chemo induced menopausal 43 yr old. Swing low sweet chariot. Then climb on back out of that trench. Throw the gloves on and pound the shit out of the boxing bag in the basement. Acknowledge, then rid the body of its black humour.

I decided to work on the end of my manuscript of this ordeal entitled, Through the Black Humour: A Memoir of Cancerous Times - still at this point, 120 or so pages long, and in limbo re self publishing or the slow surperation of finding a publisher. It is a worthy tome, I think. Based on this blog. I am proud of it. I am keen to share it. It tells of the time, effort, love and sheer force of will required to move a body through cancer (successfully). Surely others live this life, feel these things, and might just might laugh out loud if something tweaks.

But I needed it to end. I needed to write the chapter which says, ok, so far so good. Not, I am cured. Not, I am better. But, I am not sick. I am where I am. This is the place from which to leap off. There is no going back. There is nothing but forward.

I needed it also to put paid to the debt of love I owe. I needed to write down on paper the names, ideas, feelings, places which kept me alive. I have no concerns that I will survive. I have beaten down the beast. What I need to do now is see how WELL I survive.

I am in radiation therapy, 5 days a week, for 5 weeks. 25 zaps. 25 goes of routinized lay down on bed, tuck right arm under bum, raise left arm over head, lay still, careful and considerate removal of hospital gown, watching as behemoth zapper mobilizes...3.5 cm this way 11 cm the other. Clearance. Ding Dong Ding Dong. Start the zapper. 7 minutes.

It is a miracle, this process, this machine, these people. Christine, who is my RT technologist, with whom I sometimes speak french since it is easier for her and more fun for me. We talk of gardening. Children. Scheduling. 10 am is best. Enough time to drop off at school, TTC, zap, with wiggle room for lateness, machine malfunction etc. Then maybe an errand before the lunch time pick up from school.

I take the TTC all the time now, since the ride program was, well, too depressing. Seriously, nothing says depressing like driving along Gerrard St. with a car full of people with cancer, who only talk about their health (and, on that one day in May when there was actually sun!?.....Jesus God, strike me dead if i ever get so, uh, verbose about it!? Oy)

I mention the TTC also because I take it at peak hours now, for my 10 am RT. God people get worked up about it. They moan and complain. They bitch about delays and crowding and fuss. They are zombified fusspots. all those fusspots. I seriously want to bitch slap a whole bunch of them. As I cram myself onto the train so as not to miss my radiation therapy appointment, a young woman says - "well, i cannot move any further, I am pregnant and not getting squished." So I said, "ok, well, honey, you should have a seat anyhow". young dude next to me says - you're right. then asks polite as can be to someone - please give your seat to this lady - and they do.
He then turns to me and says - thanks, for helping me see differently. I almost did not believe it. Was looking for the Candid Camera, the Punk'd person. But he was totally sincere. Like from a Hallmark commercial.

So moral of the story is - speak up politely, take care with each other. Don't become a zombified fusspot. And avoid being in a car with a bunch of cancer patients.

Once upon a time...

2011-05-14T23:42:00.001-04:00

There were 10 children, some related, some not.

All friends and relations of Owen. They came to play in the schoolyard in the pouring rain, eat hot dogs and hamburgers, Duncan Hines cake, watch Harry Potter, roll out their sleeping bags on the basement floor (which really means one in the attic, two in the living room, one in the family room, and six somewhere in between). So many foreheads to kiss good night, no matter where they land. Thank you God, for that.

Some new house rules :

First, my new moniker WARDEN KATE
"Warden, no swearing" - FYI crap and shit are NOT foul language - just sayin'
then - ok, so no matter where your parents TOLD me they might be tonight.... 911 is easy

But really, I adore these kids - love the possibilities of what their / our futures hold for us

They are so lovely, funny, good natured, adaptable, marvelous.

Good night. God speed.

xo

AWESOME # 2 - Macdonalds 2 - everything else on the planet - 1

2011-05-10T17:22:00.000-04:00

ok, so maybe cold glass of water is #1, really.

Holly said...

- learning something new

- macdonalds after some drinks

- little bursts of idealism that make you think anything is possible

- a cold drink of water

- watching the leaves emerge after a long winter

- my sunroof

- movie night...

- laughing so hard I get a head ache

- realizing that life isn't about the small things

- reading as a trememdous person goes through something so heavy with such strength and personality...

Gilda has the last word

2011-05-09T19:58:00.000-04:00

Ok, actually, the first words. Upon facing her imminent death from cancer, she said:

"Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next."

That is awesome. Not http://1000awesomethings.com/ but closer. More awesome, because they are words from someone facing their fate head on. Life, short, full, sad, real, blinding, riveting, awesome.

And really, when you read the list in the book /blog/ soon to be movie, it is profound. But, I wish to start my own list of awesomeness - and we are encouraged to do so by author whatshisname - although, just saying, his name is hard to find on his actual blog. Apologies to whatshisname for cross-pollination.....hah! i still have government speak in my veins!!!! who says that, other than apiarists!? cross-pollination. Pah. Althought it, is an awesome word.

so, anyway....some awe-inspiring moments for me

- the dream you had from early childhood, of someday, sitting with your kid on a sunlit day, both reading, not saying anythin just communing, coming true
- seeing a nuthatch or a black throated blue warbler float through your back yard
- being tattooed with tiny dots on your chest to eradicate any malingering cancerous cells by Jane, the cheeriest radiologist on earth
-a big mac and fries for mother's day dinner
-warm slippers when your feet are freezing
-watching as the kids squeal, and plummet to the depths of the pool in search of the "Toypedo"
-planting herb seeds form L'Arche, given to you by a loved one, in a pot your daughter made for you for mother's day
-watching a seedling grow
-a fine fine fine cold glass of your favourite drink on a hot day
-sweat running down your back from exertion
- putting your clothes on the line to dry on a sunny day
- the neighbour you barely know who helps your nervous kid put on his shin pads and soccer socks after school for a game, cause you're not there, tied down doing a CT scan downtown
-a day-long email from a friend on the other side of the continent, with photos! and who has not changed a bit since 1976
- A+ on a math test
-a hot compress on a sore back
- beautiful photos of beautiful things

And I could go on. and on. and on. Because I know how precious all of this is. And how awesome little wee moments are, and how they feed the fire in the soul, to lift it and move it, and keep it afloat.

Show me yours. I just showed you mine.

KO

This is so beautiful it bears repeating

2011-05-03T19:38:00.000-04:00

Beannacht for Kate

("Blessing")

On the day when

the weight deadens

on your shoulders

and you stumble,

may the clay dance

to balance you.

And when your eyes

freeze behind

the grey window

and the ghost of loss

gets in to you,

may a flock of colours,

indigo, red, green,

and azure blue

come to awaken in you

a meadow of delight.

When the canvas frays

in the currach of thought

and a stain of ocean

blackens beneath you,

may there come across the waters

a path of yellow moonlight

to bring you safely home.

May the nourishment of the earth be yours,

may the clarity of light be yours,

may the fluency of the ocean be yours,

may the protection of the ancestors be yours.

And so may a slow

wind work these words

of love around you,

an invisible cloak

to mind your life.

.

John O'Donohue

~ Echoes of Memory ~

(from my anonymous poetry loving friend - Lisa Y? Dani? Gabrielle?)

The bardo

2011-04-26T18:42:00.000-04:00

Someone asked me how things were going recently, and I started into the pat "nice-isms" I am programmed to say. great, fine! wow! look at me! But what I really wanted to say is this:

I am in limbo; I am moving through, slowly, through my own life, unsure of this new body, and mind, and what happens next. I am stitching myself back together a wee bit everyday.

There is no "going back" - life is on another course, and one that has far more [and ironically fewer] nuances, bumps, and lumps. There is still a huge part of the old me, known to me as my core. But emerging from the foxhole in toto is proving to be a hard thing for the core, that wee battered thing.

People, my family, my insurer, others - are anxious for me to "return". Chemo? Check! Surgery? Check! Radiation - on deck - Check! Hair growing in (not curly, not luscious, all those liars!) Check! Tamoxifen? Check! Stepping stones, all - but to where? What does it look like out there? What wil be my new part in this new world?

I am not going to do that, return to the life before. I am going to learn to transition myself back into the world. I am going to trust myself, and my loved ones to do this with me - at my speed.

In the Tibetan tradition, the place between lives is called "the bardo." We do not live in a culture that supports a thoughtful meditative approach to recovery and/ or healing. Before the lights are off in the ER, you are literally packed up, and booted out of the hospital with a bag of alcohol swabs and not even a prayer. Your home care nurse is your only real touchpoint - hovering on the transom to the other side - from the entire sugical medical team who asked you your birth date and took your vitals 6 times, drew on your body with a sharpie, rent it asunder and then stapled it all back together.

Recovery is what your body does, but healing - healing is what your entirety does - body, mind, soul. Recovery can be bouncing back from surgery with an excellent clinical response - off those pain meds and flipping that arm around like nobody's business inside of a week or two.

But healing takes time. All parts need to find their new normal - the body, most obviously to the outside world - hair regrows, there are changes to the outline of the body, the scars settle - the tissue reworks itself into a new fabric; the mind needs to settle into a place where the concept of a recurrence is accepted, or handled with dignity, not fear (because the common medical wisdom now is that cancer is a condition, chronic, but at bay); and maybe the mind even needs to relearn all the things it has forgotten - names, objects; and the soul - finding answers to the awesome questions brought right up close in your face. And answering who am I now?

This is the bardo.

Having New Eyes

2011-04-21T22:35:00.001-04:00

As Easter and Passover come through once again, and we rejoice in renewal- I am surprised by my need to be comforted by rhythmic rituals. I am not a Christian, so it is more for me about spiritual renewal and embracing the change from cold frozen to warming growth. I wait and poke, and hope. Spiritual stasis and status quo to movement through to renewal.

I am reading a lot about change, managing it, and finding your way through, but the choice of how to do so is up to you (me):

"It's as if you are reaching out to life with a closed fist rather than an open hand, clinging tightly to the old, instead of being receptive to something new."

Survivors need to learn to see through new eyes, so we can "learn strategies that will develop our stamina, give us a robust attitude towards change, and teach us the flexibiity that is necessary for swimming with the ebb and flow of life's currents." from Picking Up the Pieces, Magee and Scalzo.

If you like the bunny, here's to eggs, and spring. If you have been passed over, En shallah. Yay.

Life is short. Enjoy. Feast. Forgive. See with new eyes.

And Suddenly - Limbo

2011-04-18T16:31:00.001-04:00

This post is mostly me quoting others, since my brain is stuck like a record - ambling between two grooves - anger at my poor mutilated self, and a surging "screw-you, you little bastard" groove- I am ALIVE. I WIN [so far].

As "Sandra" says to her own breast cancer tumour in Bonnie Burnard's new book Suddenly - "you little black-hearted misery." She goads it, threatens to annihilate it. I could not read the book at Christmas, but now, in Limbo, I can. Funny. Progress.

As mentioned before, I am caught in this weird freaky surreal space. I am stuck looking at myself. Was my self image so fragile that changes, regardless of their life saving ability - crush me thus? I am so sad. It is not the flesh so much as what it formed spiritually - connective tissues, secretly coiling up my spine to merge with my cerebral cortex - proving my essential identity and showing me as I was to myself.

My ribs, foreigners from another planet, are now here ever present instead, shaping one half of my upper body, undulating across - where flesh once was. Sounds echo and pound through them - heart, digestive system workings. Now I resemble that metaphoric malnourished child that surfaced in my chemo-times.
As Michael says, we are "building up scar tissue."

And then there is the limbo itself. Michael Feuerstein, MD, says it in his book The Cancer Survivor's Guide - "For some time after I realized I had beaten the cancer, for exampe, I lived in limbo. Survivorship is not without its challenges." He goes on - "fear of recurrence, memory problems, going back to be being a productive member of society - family, friends, most of whom often just don't quite understand what it means to be a survivor."

As Michael also says - "On we go. Sometimes, I'm sure, neither of us know how."

Naomi Rides 2-Wheeler

2011-04-14T22:01:00.000-04:00

Video of day 2 of Naomi alone on her two-wheeler! (April 9, 2011)

Life goes on, and it's glorious!

Hard to Imagine

2011-04-12T17:58:00.000-04:00

Dr. McCready let me hug him. It was a special moment for me. This man who cleaved me open and removed x amout of flesh deserved a hug. bottom line - he said there was still evidence of the cancer, 1.7 cm of one, and 4 mm of the other, and when done, he left "clean margins". That is good. I am healing really well, physically. Flying colours.

Next, radiation therapy. Must be done. Clear out the cavities of the gunk. 5 weeks, every day. Cdn Cancer Soc. driver service, here I come.

It is hard to imagine that not even a human-gestational period ago I was just beginning on this path, with its twists, turns, free falls, and roller coaster rides - and now I am expected to turn about face - and yell whoop whoop. Like the definition of irony. Hard to pin down, but you know what it means.

I am still stuck psychologically turning the Titanic around on a dime.

I am caught in this weird freaky surreal space with the additional bonuses of:

a) chemo-onset menopause (kids, if mummy is talking to you through clenched teeth...that is not good, walk away slowly.... and waking up in the middle of the night boiling hot, several times)

b) reduced close and improved long range vision - ie. $700 worth of new glasses

c) explaining to an insurance carrier "representative" - aka hired gun - what possible time frame might be considered for return to work - and realizing somewhere mid-conversation - Oh no, maybe I am saying the wrong thing?! Should I be pathetic? Needy? Screwed up? Will they make me go back to work when I can barely leave the house?! Wait, do I live in the US or Canada? What? I am sooooo confused.

d) a complete lack of coherent ability to finish a sentence, reach for anything higher than the first shelf, or put on anything other than stretchy cotton without some degree of agony

e) throwing out my favourite dresses, since listing to the right up top ain't gonna work - thank God for the invention of the skirt - and I can't put it on anyhow.

Sigh. Big Sigh. It is hard to imagine, the life before, the life ahead. Right now, the current life is an acceptable level of everything. Healing. Calm. Focus. Support. Clean margins all around.

On the approach to normal

2011-04-10T11:22:00.000-04:00

Yesterday, we took the subway to the TIFF Bell Light Box to see the Tim Burton exhibit - the place was packed. Ok, so his material is freaky, and sometimes gross, but the man's range of talent is stupendous. From his early Burbank CA life to his now infamous celebrity Hollywood life - on so many levels - the exhibit covers them all really well. The failed-curator in me had a lot of other thoughts - like too small a space for too many things - claustrophobic, but clearly a MOMA type exhbit - polished and packaged.Well-lit, but text panels too small for each object. Not well delineated - as it by movie? time period? OK, I will stop.

Some stuff too freaky even for me - hence the 8 yrs or older caveat. Naomi was clinging to Daddy at about the 3/4 way through point. There were a few points where we thought it might be a good time to leave. Thank God they have a seriously [and yes, freaky] funny video of his version of Hansel and Gretel, which was was just ookie, but the kids laughed a lot. Marshmallow houses ooozed sugar through holes when punctured. Nice. Tm's big fake candy cane nose, excellent.

Later that evening, we bumped into some friends as we were coming out of the Varsity cinema [NB - Kate out in public TWICE in a day, doing normal life things!!] after seeing ARTHUR and they were on their way in [to not see ARTHUR]. We chatted about our day, and my friend Ed said, wow, the kids can live through the hell of cancer but Tim Burton freaks them out!!??? Ironic...or something to that effect....interesting point.

And I take his point. We the grown ups in this Cancerland may be inured to normal horrors, because we have witnessed or participated in worse, but thankfully, the children have miraculously survived, intact, with their gore-meters working pretty acurately. Somehow, they have been kept at arms length from the real horrors. and what they did witness, has been absorbed into their mitochondria. Such resiliency. I am now even more impressed with my kids.

However, this was supposed to be a post about the approach to normal.

A gorgeous day - daily outing on transit, Naomi raking leaves in the back yard, Owen and Naomi in the school yard on their wheels of various kinds, sunshine, planting vegetable seeds and strawberries, kids fighting over who gets in the newly mounted hammock on the upper deck....Spring. Normal.

I have to say I think I have about 65% mobility back in my left side - admittedly, I do the exercises -sometimes - but doing stuff I like to do - gardening, etc - is also providing the same motions. So I do some dilligently others not so much. I cleaned the toilet today, and that was too much of the wrong motion. Gee, that's too bad.

Seeing surgeon tomorrow to find out what was in the removed part of my body.

Happy Spring.

She's come undone

2011-04-06T17:55:00.000-04:00

Ok, not quite undone, or else the surgeons would have some serious trouble on their hands, but the staples are all out. All the tubing and foreign matter is gone. I will spare you any details. Revolting. But wow, the difference to me!!

Yay!! I feel like a new person. I feel like myself again, sort of. I can move so much better today, than even yesterday. I hope this just continues upwards and onwards.

Ok, so it is weird / ooky having a partly concave chest. Your t-shirts sort of drag to the right, you know, snagged by, uh, something that is no longer on the left side. It is kind of like I am that half man / half woman charachter from the circus, turn one way - man [actually, boy]. turn the other, woman. Interesting.

But another little chapter is over. Thank God.

KO

Let My Freak Flag Fly

2011-04-03T00:05:00.000-04:00

Crosby, Stills, Nash and Young had a song called Almost Cut My Hair, which we played for Owen recently, given his long locks, which I am jealous of. [He is rebellious in ernest and simple ways.]

Catherine came over this afternoon, and we discussed the bodies we inhabit, and taking time to consider what is, vs. what is expected.

I said I was feeling a bit like a freak show - people I have known for years not recognizing me on the street car or on the street. It has happened a few times.

Naomi mentioned to me yesterday that I resemble not at all the mum she sees in her Soccer Team photo when I was her coach, 2 years ago. "Wow, you really don't look like that anymore." Casting no aspersions, merely commenting.

But we get one shot, one kick at it, and so,whatever the freakshow is, it's me now, and it's what is inside that counts. Trite, but true. I am thankful my loved ones see that. The seriously lopsided bald but slowly growing grey haired head, wrinkled and worn face in the mirror is hard to reconcile with the me of before. But my people still kiss the head and squeezy hug the contorted and misshapen form.

So here are the lyrics for the song - interesting. I think the person I owe it to is myself.

Almost cut my hair, it happened just the other day.

It's getting' kinda long, I coulda said it wasn't in my way.

But I didn't and I wonder why, I feel like letting my freak flag fly,

Cause I feel like I owe it to someone.

Must be because I had the flu' for Christmas and I'm not feeling up to par.

It increases my paranoia, like looking at my mirror and seeing a police car.

But I'm not giving in an inch to fear cause I missed myself this year.

I feel like I owe it to someone.

When I finally get myself together, I'm going to get down in that sunny southern weather.

And I find a place inside to laugh, separate the wheat from the chaff.

I feel like I owe it to someone

Down to the wires

2011-03-31T13:22:00.000-04:00

Had half the staples removed, went really well, all my anxieties about it kinda dissipated. That is probably because I still can't feel a damned thing! But I was heartened by the gardening Michael and I did in the sunshine yesterday, bagging dead stuff, cutting back - cleaning, and a bbq for supper. Almost normal.

Find myself pushing physically, to see what is possible. How far back can that arm go? How long can I type for? Pain is a natural red light. Thank God for our bodies being wired in this way.

The Bottleneck

2011-03-29T21:14:00.001-04:00

[Caveat emptor -If you don't like the F-word, don't read this]

So you read the material provided, and sit through the "survivor" sessions, but nothing, and I mean NOTHING can prepare you for the road ahead, train tracks directing metaphorically or not. Others survivors try, bold truths or even gentle lies. NOTHING prepares you for the bodily harm done.

My mother in law described the surgery to me today as "bodily assault" - an attack - really - on the body. She is right. If someone other than a surgeon took a knife to me and cut me in the same fashion, it would be a crime. Thankfully, I have faced my virtual attacker, the cancer, and know the physical assailant, my surgeon, is a gift. He saved me. He preserved me for my loved ones. The team of medical professionals has saved me. My mother says the tracks, the scars, are the same as when she first saw them some 50 years ago. Alarming, but not surprising. Impossibly hard to see on your child, no doubt. Have we progressed not at all?

But this wound, which is stapled together like a mere paper bag, which I quite seriously refuse to openly admit, talk about or discuss, will be rent asunder tomorrow, and it better fucking hold tight. Miracles of modern medicine had better work for me tomorrow. Or someone will pay. I know not how, but there will be vengeance. It's the pain I fear. I said to Michael tonight, I took the other invasions of my body in hand, since frankly, the goal was clearer. Beat cancer. Swallow the medicine. Do the time. Greater good.

Now, I am closer to an end game, "freedom" from cancer, but I am running out of gas and frankly, I am afraid of the pain. Like someone in a foxhole, immune to the bombs, but afraid of the sniper. Can't see the forest for the trees. It makes me sleepless, wide awake, panicked. Mental-making. And here we thought we were in the end game. La La La Land.

So many words to express the jumble of emotions and feelings (really- thoughts, since I feel very little in my upper left quadrant, except loss - and what I do feel smarts like hell) - about this phase. This whole thing is a mess. Doctors, life issues, children, lunch, laundry, payroll. Fucking payroll, of all things.

I actually got a letter from my "employer" saying "if you have a terminal illness or have less than 24 months to live....fill out this form" --Yes, I did. How is that for a mind-mess? Received by mail, the day of my surgery, no less. By my poor exhausted and cancer-weary husband.

So ok, besides that, I am a typical post-cancer-surgical mess. A perfectly, exquisitely sewed together mess of thoughts, emotions, and hope. Emotions bottleneck, burst through. I have a long long list of people I could throw darts at right now. Don't ask. Simple transactions gone wrong, Life wrongs un-righted. Long line ups at Zellers.

As Owen says - "Mum, cool it. You are REALLY grouchy."

Yes, I am. And with good reason. Will update on staples.

One Lovely Blog Award

2011-03-25T19:30:00.000-04:00

Hi Auntie Cake,

I know that you still have a tough road ahead but I also know that you will succeed and inspire all those around you and who hear your story. Your courageous journey to health touches all. I have been given the opportunity to award your blog with the One Lovely Blog Award. If you go to my blog you can copy the badge that you can display on your blog. Feel free to ignore that other award rules until you feel like it!

Enjoy your health and thanks, Ian Hadden

www.ianhaddenfamilyhistory.blogspot.com

Me and my first boss - 22 years later! and her lovely hubby, Andy

2011-03-25T19:28:00.000-04:00

My first "boss" Joy Houston is one of the loveliest people you could meet - a true example of positivism and "coaching". She practically adopted me and Sandra, my friend and another of the summer students. We met in 1988 at the National Archives, and have been in touch through thick and thin - these past 22 years. Example of how to love people: show them - be there, write kind loving notes, send funny jokes, make fun of your baldness. Or as it happens, compare your baldness....

Joy and Andy I love you guys. You are the best. xo

Written on the body

2011-03-25T14:44:00.000-04:00

I can't really express it an other way - The powers that be are smiling on me this sunny day. I feel like throwing my arms up and rejoicing. I feel well on the way to a clean break from my cancerous life.

While the surgery day was a shocking bleak midwinter's day, the next, the day of my returning home was bright, sunny and full of hope.

The surgery, according to Dr. McCready was straightforward with no complications - clear-cut so to speak. The nurse who came today changed the dressing and was impressed with his work. Not a drop of blood. Not a bruise. Skillful and kind to the body, surely a rare combination. The festering scar from my portacath removal on my right side testament to this difference in skill and care. A team of caring professionals - hands on my feet in a gesture of care before the surgery, calm reassuring voices, and cheerful and kind people, all part of a vivid memory of this time.

By the end of day 1, I was walking around the ward and eating Thai take out. And now home, I am up and about, typing, eating, etc - with great range of movement in my arm - even thought I cannot really feel it - numbness from cut nerves - I feel like a normal person - startling progress for day 3, I am told by those in the know.

As I learn where the spear-sharp pain points are - the point at which you gasp and need to stop - and as Michael has learned the "milking the drain" process- our stress levels ease off immeasurably. We can handle this round. It has fewer roadblocks and diversions.

There are 39 staples across my chest. They are like a train track - while hideous and raw, quite beautiful, if you think about it. A metaphor of travel - a pathway moving away from the darkness and into the light - bright and sunny, and full of hope, written on my body.

Surgery Done

2011-03-23T23:08:00.000-04:00

by Michael

It's just after 11:00 p.m., and I'm just back from PMH. Kate's surgery was this morning. It went well. As the surgeon told me afterwards: "As expected. No surprises."

Kate is now sleeping. One night in hospital. Home tomorrow morning.

She was alert by early afternoon, feeling dopey. Discomfort and some pain. More movement in her arm than expected, but it is limited and sharply painful in some directions.

She is in good spirits, however, and resting well. I'm sure she will give her own account later.

Boobs, Booze and Brisket

2011-03-22T20:34:00.001-04:00

On this last night of my two-breastedness, Lisa came over with a gift from the Gods - Schwartz's smoked meat, right off the plane from Montreal. And rye bread. While Mike prepared salad, Lisa and I shnorked down on some amazing not lean not light full on Montreal smoked meat sandwiches. Uh, sure I'll have salad....Lisa didn't bring the cherry cokes for fear of confiscation at the airport, no liquids....

So we drank (booze), ate (brisket), and well - we plastered my boobs with plaster of paris to create.....

Au revoir ma fille. I will miss you.

Good night and good luck. See you when the anaesthetic wears off - when we will keep you abreast of the situation.

Surgery This Week

2011-03-20T22:58:00.001-04:00

by Michael

Just a quick note to let everyone know that this coming Wednesday (March 23) is the day Kate will have her mastectomy. Some people have asked me questions, so I will confirm here that it will be a mastectomy, not a lumpectomy. And it is a single mastectomy, not a double. In plain English, they are taking off Kate's left breast entirely and leaving the right one. The surgeon will also be going into Kate's arm pit and removing a number (upwards of a dozen it is reasonable to expect) of her lymph nodes.

Today we had a visit from a neighbour who had similar surgery two years ago and she described it as worse than her emergency c-section. Not as bad as chemotherapy, but horrible nonetheless. "Like having a broken arm," she said. And it will be Kate's left arm, and she's left-handed. A broken arm, in that there is a level of temporary paralysis, but much more than a broken limb. A new gruesome void.

So ... what does this mean? One night in hospital, we're led to believe, followed by about five days in bed. I won't go into all of the gory details, but she will have two drainage tubes to remove fluid build-up for seven to ten days. A home nurse will visit every day for up to two weeks. The nerves in her arm are expected to be damaged and the physiotherapy is supposed to begin as soon as possible to get as much movement back in her arm as is able. The difficult period, we heard this afternoon, is likely to last six weeks.

Our neighbour's visit today was, yes, sobering. But welcome. Better to know what to expect.

We have spent the last few weeks relaxing and recoving from chemotherapy hell, and it is hard for all of us to think about this impending next stage. I will be home for at least the next two weeks to be hand waiter for all of Kate's needs. The kids will be kept away ... for at least five days post-surgery, is the plan.

I know you will be thinking of Kate and all of us. Simply, thank you.

On Watercress Pond

2011-03-18T16:21:00.001-04:00

We have just returned from Watercress Pond, for several days – then on to Tweed to pick up the kids. It was a most lovely little spot in the middle of the Caledon Hills. Our hosts were respectfully distant, except for the introductory welcoming hug from one, and chit chat about cancer - hers and mine. Then off to get on with her life.

One member of her clan though, Maggie, the lab, became fond of us, and I think, although I am no dog whisperer, she kept watch. When the sun was on the front door, she was laying there, peering in through the glass (No dogs allowed in, or cats, smokers, etc, even if they reside on the property. This is a safe allergen free haven). When the sun shifted, she moved to the other doorway and sat there. Ever vigilant. We went for a beautiful long walk joined by the dogs (Maggie, Guardian and protector (golden lab), and Sophie, lovely too – a flat coated retriever for you doggie people.) Maggie was obsessed with her throwy toy. Mike and I obliged. We both agreed, Maggie is a part of the therapy. Apparently though, we were the first guests she has acted like this with, not even going home when her master called. Doggy got into trouble. Oops. We may have to dognap her.

But there really is nothing like doing nothing - except walking by chilly ponds and streams, with goofy dogs, and yummy hot meals, and reading books by a roaring fire, and sleeping like a baby....to rekindle the inner spirit. The walk took us through a lovely neck of woods, with a stream, an old stone cabin of some sort, and a beaver dam - the sun beaming down on us, impossible to not feel right in your bones.

We have had a roaring fire for two days straight now, and we played scrabble, read, and ate and drank. And of course, played with the dog.

Our host had breast cancer 5 yrs ago. She is an Anglican minister. She and her husband open up their lovely farm house to anyone in need of refuge or respite. The guest book includes a wide variety of names – from people who barely know them, to long time returners to this place. There is a pool (outdoor), climbing gym, and all manner of puzzles and books for little people not to mention the rooms of bunk beds.

There is caring for others here, of all sizes and ages. There is a giving and an easiness about this place, that I hope I can export to my own life. The open air and positivity of the environment embrace you.

Our host came to us again on our last night on her way out to dinner, and we thanked her so much for her generosity and care – she said she was glad we came and could enjoy the place.

When she was gone for dinner I proceeded to climb the tree, which looks onto the valley and trees beyond. It has been begging to be climbed. I lived my childhood with 4 apple trees in the back yard. I took to it again like kid to candy. Mike too some pictures. Ok, so I am nowhere near so gainly as of yore. But it felt good to ham it up and pretend I am leaning over the precipice of a dark valley. Hey, wait a minute....

xo KO

In light of things

2011-03-11T13:04:00.000-05:00

In light of the world-numbing tsunami and earthquake in Japan, this might seem trite. Or perhaps apropos. Not sure.

Stepping back even briefly into the stream of every day life, which courses outside my home perpetually, the world from before, is proving to be a scary venture for me. Literally, there is a mental hurdle to make before stepping outside the front door. I do a lot of "consolidating" of tasks, hence fewer trips out there. I like my home, in fact I love it. It has been a haven and a comfort to me. Yes pain has visited too, crashing through the door, but comfort eventually banished it, and it feels safe for me.

Most of you know I am an extrovert in the extreme, so this is a whole new weird thing for me. A wee bit scared of the pace, the lights, the people, the expectations. Given what is happening all over the place - Libya, Christchurch, Japan, God, it seems wherever you turn - it seems to me [in this hypersensitive zone] - it is a scary place. You never know what is coming at you. You never know what will strike.

It might be about the hair, growing in, fuzzy, not normal. It might be the re-appearance of the TTC in my life. Scary anyhow. It might be the calendar, slowly filling up with normal things to do. I don't know. I do know this, that something deep in me is struggling with it. Not sure if it is safe to go out again, get tousled, knocked about. The cancer made me feel physically inferior, and wore me down to a nub. It took a bite out my chutzpah. It made me feel like a persistent open sore, with so many things that can jab, poke, infect. It will take a while I suspect to regain it.

I don't feel physically inferior anymore, given my ability to kick cancer in the balls. I am working out again, building strength for the surgery, and for my mental health. But still....something niggles. pokes.

My psychiatrist assures me this is normal - all part of the post-traumatic stress part of cancer - but we're not quite to the post yet. There is a mountain of stuff yet to go through, and be dealt with. Giants are felled by less than cancer.

More on this, later, no doubt.

The Doctor's Report

2011-03-08T19:01:00.004-05:00

by Michael

The following is a reproduction of the doctor's report of Kate's visit to PMH on February 14, 2011:

We had the pleasure of seeing Mrs. O'Rourke in our Breast Surgical Oncology Clinic on February 14, 2011. She is a pleasant 42-year-old woman who was diagnosed in the fall with a locally advanced breast cancer. There was a large hetrogeneous mass in the left upper outer quadrant of her breast. This measured 5.3 x 2.4 x 3.3 cm. There were several other enlarged lymph nodes in the left axilla. The largest of the lymph nodes was 4.0 x 2.8 cm. She was subsequently referred to the medical oncologist for neoadjuvant chemotherapy. She underwent dose dense FEC-D in the neoadjuvant setting and is now scheduled to complete her TAXOTERE on February 18. Overall, she has tolerated the chemotherapy quite well. She has had an excellent clinical response. Her lymph nodes in the left axilla are no longer palpable and her lesion in her left upper outer quadrant of her breast is also no longer palpable. She returns today to our clinic for discussion regarding surgical management going forward [emphasis added].

What you can't see is the smiley face that Kate's GP has drawn in the right-hand column. Kate got a copy of this report today from her GP, who couldn't contain her happiness.

The report continues:

Today she is well and in no apparent distress.... Her energy level is quite good. Her weight has been stable. She said that she has had some difficulty with the chemotherapy although quite tolerable. She is on an excellent regimen for nausea and vomiting. Her pain in her bone and joints has somewhat subsided.

It continues, but the key point is here: "I was not able to feel any palpable abnormalities in either breast. This is quite remarkable as she has had an excellent clinical response." Another quote: "There is no palpable disease at all."

The report goes on to note that the doctors recommend a mastectomy of the left breast and note that radiation treatment is likely to follow, as well as drug therapy (tamoxifen). It also notes that a CT-scan of Kate's liver area will be done (and it was done last week; no results yet).

Kate visited both her psychiatrist and her GP today. Both were very encouraging and cautionary. All is going well, and also there is much yet to do. Stay focused and stay the course.

Surgery is March 23. For the next two weeks, relax and have fun. You've earned it.

:-)

Kate here - YAY.

The splendid tonic

2011-03-05T17:57:00.005-05:00

I have become an self-annointed expert on friends. [Caveat emptor - not necessarily being a friend- which is a growing ongoing process, a long term connection requiring tending by several parties - a job, in a sense.]

What I mean is that I have become an expert on what it means to have - ie. receive, friendship. How can you not, when life throws the book at you? You NEED folks to hold you, catch you, console you as the proverbial walls come tumbling down. Friendship is a healing tonic; it can provide so many physical, mental, and soulful benefits. There is nothing like it. A friend who finishes a sentence, catches your eye at just such a moment, or physically provides sustenance. Food, a G/T, a hug. I am amazed by the way you love me.

I first encountered "the good friend" - the one who does not walk away when crisis hits - in 1994. Previous to this, there were people I spent a lot of time with, and joked, lived, ate, drank, shared with etc. But a significant bond forming? Not so much. Maybe one- Rebecca, still with me, 34 years later. In 1994, while I was working on my MA thesis and drinking too much brandy, smoking too many cigars and listening to far too much Nina Simone - a dear lovely friend chose not to keep up with the keeping on part.

He left us all standing, paralyzed, shell-shocked, in the crater he left behind with his rifle. We pulled tightly together, dazed by such audacity, bravery, hubris - to leave us, his friends. But bonds were formed which have resurfaced. Friendships like that don't go away, they just ebb and flow. Sometimes for 20 years. The long haul approach. I know some of them are at the preriphery of this, my new life, and I love them for that. Their watching, and being present with no intrusion. 1994 can still seem like yesterday, given the right music, a certain quality of winter air, and a brief recollection. And now, I have something else to compare it to.

More recently, my beloved friends have swarmed me. I am so honoured and delighted because if there was a God (I remain unconvinced, Sorry Tim), she brought these people to me. She brought me the bountiful complicated kindnesses of true friendship. People who call when theire own lives are frantic, drop by, pick me up; so many many things people do for me, it boggles the mind.

My life is so rich with friends, i would make all those Facebook BFFs super jealous. I know who to call for any particular given situation throughout this state of being- and any incarnation of it therein; someone will provide me with the following loving endorsements:

listen to the snot-filled crying jag at any hour,
take my kids to play, rest, eat, at the drop of a hat,
make fun of me in the best possible way in order to make me laugh,
cook for me, or bring my favourite food
clean or pay others to do it too so I don't have to,
take my wig to New York,
allow themselves to be photographed in my wig
clean glitter off my floors,
call my medical team for me,
yell at me across the schoolyard,
send me flowers just because,
knit me hats or cowls, or hoodies,
send me mail - jam, cards, vintage post cards
bottle fresh NB lobster for me
check in on the phone, even though I never answer,
send me pizza gift cards from across the continent, cos she aint here to cook,
buy me socks, body cream, or socks with body cream in them, lotions, potions, candles, creams
share their stamp / coin collections with me enthusiastically
send me chocolates and wine, cos eventually i will be able to consume them (gone!)
send me heart emoticons on facebook or invitations to play farmville or whatever
drive me to doctors appointments
plan pedicures, even though my nails might fall off into the bath water -eeeeeek
smile at me every chance
provide me with alternatives for pain relief and nausea meds
hug me from behind, when unexpected
compliment me on my hat (!)
take me to coffee and a trip to Value Village
help me when i cannot think of a word that is so keenly obvious
invite me to BOXFIT to kill cancer, so i can watch and feel inspired

Frienship is the glue that holds a person together - like a broken doll. Not very profound, but very real. There are levels - and all have value. You never know what you will need at any given time, and there is usually a solution for each individual problem presented, given the right mix.

xo KO

Port-a-cath .... Gone!

2011-03-01T20:32:00.004-05:00

by Michael

Today we were at Toronto General, where Kate had her port-a-cath removed.

Quick, 20 minute surgery.

Went very well. Excellent care today. Lovely nurses and doctor.

Yay!

Here a link to the post from November 2010, when the port-a-cath went in.

I remarked to Kate that she's been doing a tour of Toronto hospitals. In the past year, she's had care at:

Toronto General
Toronto Western
Princess Margaret
St. Mike's
Toronto East General
Mount Sinai

Phew! (I just asked Kate which one she considered the best: Princess Margaret. Toronto General was overall non-cancer related best. Toronto East General was the bottom on the pack.)

Kate asked to keep the port-a-cath, so the photo here is the exact object that was removed today from her chest!

As Princess Fiona says in Shrek Forever After, Better out than in!

The Panic Button

2011-02-28T14:07:00.000-05:00

I had a panic attack yesterday. I have never had one before. I hope not to ever again.

It slowly built from butterflies in my stomach at bedtime, not calmed by hot milk and blogging, and then pressure on my chest, which grew from small pebble to boulder size - with me unable to see beyond a very dark bleak spot on the horizon. Shaking limbs.

It really kicked in at about 2:30 am, waking me from a drug-induced sleep, more like a coma - some sentient part of me completely terrified by my horror movie like dreams - very bloody, gory, completely disaster based - me running away, running to save, being chased. I awoke exhausted. I have to have my portacath out tomorrow, March 1, and the gory dreams made me fearful of this minor invasion. I battled the gaping maw of this panic all day, trying to combat it with "busy", distraction, building playmobil [as they say in the PMH literature about stress].

Literally wringing my hands. Staring out the window. Gotta do something, gotta get out. We went for a walk, I took drugs, but nothing helped. The tide was rising. The sense of doom very very real. My heart was palpitating, my body shook, my breath was short. I called my doctor's office, and the "on call" indicated they were concerned for my heart, which can be weakened by chemotherapy. They had to rule out heart attack and if it is a panic attack, medicate accordingly.

By 3:00 EMS was here, hooking me up, and off to East General for a few hours to check the ticker. My heart is fine. My nerves are shot. I am now medicated. And hoping to find some way through the next period of time where I can survive my anxieties.

It is still frickin winter. I have had a very busy weekend. I still feel cacky. I am not sleeping well. I ran out of Ativan. My mind is in overdrive with fear of surgery. I panicked. My body reacted.

The hospital experience was disgusting, really. PMH is a golden temple of healing and beauty for the unwell in comparison. The "newly organized" ER of TEGH was borderline inhumane - and decrepit. A lot of people walking around doing nothing, it seemed to me. In my particular mental state, it did not help that the sick lady next to me in my curtained veal fattening pen was driving me nuts - basically she had the flu and was too stupid to figure it out, and bemoaned her state. Really, she moaned. I was close to throwing my shoe at her through the flimsy curtain to shut up. The doctor's instructions to her were to go home, drink gatorade, and eats bananas, rice, apple sauce and toast (BRAT diet). Shocker, that.

And for the panic stricken, hanging out by yourself is not really a super good idea. Michael was not "allowed" to sit with me, since the curtained beds are too close, and it infringes on privacy and the nurse's work space. My nurse - real busy - was looking at Pre-Oscar stories on the internet right in front of me, waiting for the doctors. This new systems "assigns patients" to nurses, and until they are seen by the doctor- you're stuck with it. Fantastic standard of care. Alone, freaked out, in panic mode, surrounded by moanin' minnie and the bored nurse. Michael and I texted each other from lobby to bed. I eventually went and preferred to sit with him in the hall. Half naked in my gown, not allowed to eat or drink, surrounded by the saddest sacks.
At one point, I was ready to pull the IV line out and run.

But I knew that was a bad idea.

Finally, it was over. Got m scrip and got the hell out of there. After returning home with kids watching Amazing Race, medicated appropriately, life seemed semi- normal. Close.

I seem to be capable of taking it now, as it comes, in 15 minute intervals.When the butterflies unleash, I begin the protocol.

Speaking of protocols, Andy was telling me that neoadjuvant chemotherapy is not entirely successful for all patients who undertake it. Many get through one or two of their sessions to find their blood counts too low, they are too anemic to continue - so they pause treatments and alleviate the symptoms so they can go back for more poison - meanwhile waiting in fear the cancer cells are back at their dirty work. I would go insane. I would panic. I don't know how women do it.

It is not a common practice for a patient to take the full hammer, mega dose, 6 times in a row, without any disruption to the flow, or bad blood results. Well, I did. I am extremely cheered by this. Yay me. I did it.

However, the physical part of the chemo is over, and now the mental part of the bigger picture is settling on and around me. The reality of the next month, and the cruelty of several weeks of somewhat normalcy - then SMACK - big bodily altering surgery - is seriously messing with my head.

A rollicking good party

2011-02-27T13:58:00.001-05:00

This post has nothing to do with cancer. This one is purely for Naomi - my sparkly gem. She is 7 now.

Really, nothing says "Happy Birthday" like sparkles and 10,000 tiny pieces of Playmobil everywhere and only half the instructions. Gives new meaning to a thousand points of light - glitter provides more than that, let me tell you.

An "art attack" hit our house on Saturday, and a small army of willing souls pulled together to provide Naomi with one fantastic 7th birthday. Maybe even a birth-e-nalia, in fact. A verifiable hootenanny. Nothing really says "overcompensation" like an art attack birthday party (ok, cancer ref #1)......

An excellent idea. Lovely! Creative! Remind me never to do it again.

"Logistical Execution" might not have been given enough consideration on my part, I admit, even with an ECE trained helper and alcohol to assist. Uh, I have drug addled brain (ok, cancer ref #2). You no let me plan stuff, 'k?

It seemed simple enough really (if you smoke crack, say) to get stuff from the dollar store, and then cover all surfaces and tables with sheets of plastic, oh and then cut out small 4x6 pieces of paper and forget where you put them and have to do it again, sort 10 zillion types of glittery things, jewels and stones, and cut enough coloured wool to make me a nice wig......[good one Nana Barb!]

Let me tell you, "Look who's 8 years old" is looking more like 1 friend over for a hot dog and a video.

But ok, really, it was fun. For the kids. Self portraits, seascapes, treasure boxes, clay creations - and after that 15 minutes was up.....Well, yes, mummy, duh. I thought it might take longer than it actually took for 7 wee ones to whip through 4 craft stations - express style - and then - 7 little expectant faces - so what's next!? Tongues wagging, a little bit of slathering over the Doritos bowl.

Thankfully other adults with firing synapses were present - and some quick thinking on Cathy's part for some games - how novel! games at a party! So who likes Simon Says?! provided the ticket for another 45 minutes. And cake takes about 5 minutes. And then presents - but when timed how quickly they can be unwrapped....well, not as much time as you would think.

Seashells, glitter, friends, balloons, silly games, presents, and a big old chocolatey cake. And alcohol for the grown ups, really, needs must (ok, cancer ref #3, beer and chemo, not a bad combo, bitter both). That about sums it up.

And I am dead serious about hot dogs and a video. Shoot me if I do otherwise.

Permission to stop

2011-02-25T20:31:00.019-05:00

So, the news is beyond good, it is exalting - but frankly, the quotidian things have not changed in the week post chemo. I still feel like crap. The mire is still thick around my heels. I am still feeling like I have been wacked over the head, can't eat properly, dog-tired.The news, great as it is, is sort of like a dispatch from a dearly missed loved one far far away - "home in 6 months time - see you soon." But damn, the knowing meagerly helps ease the daily grind. I do not want to live for the tomorrow, but right here in and for the now - even if it is a series of body blows. I can't help myself.

I say this not for sympathy purposes, but rather, for my own heed. I have become more cognizant of the need to stop. Breathe. Rest. Michael said to me last night, I feel like my number one job for March is to get you to slow down. Well, that is one tough gig. Good news is like jet fuel - for me, and for those around me - the phone has rung off the hook, the email pours in - the invites to do stuff...

I am trying, slogging through normal things today, in anticipation of Naomi's birthday party - easy stuff really - baking a cake, loot bags. I ordered all food, gifts, etc to the door via internet. No dope me. But I feel the tug, the pull of my former life. All those things I did, and well, and enjoyed! But not yet. Not possible. Even feasible? Even desirable? A question worthy of considerable thought.

It appears through my own psychological pathology I require permission to stop. Cancer has brought me this permission, has brought the juggernaut of my former life to a grinding halt. This is a good thing. This is a blessing. Now I know to heed the call.

*

Michael here now. Kate said, "Feel free to add to that."

It is true that I said to her last night that sometimes I feel like I was brought into her life in order to get her to slow down. She was feeling like she needed to do more. "More what?" I asked.

Earlier, she'd asked me what I wanted her to do, and I said, "I want you to do nothing. I want you to sleep."

She was in bed in the middle of the day feeling like she ought not to be in bed. "Bah!" I said. "You don't need to do anything. I'm here to look after you." Did I mention that it was her birthday?

So when she said she felt pressure (from where? from herself, from who she has been ... ) to do "more" as we move into March, I said I intend to do less in March. I intend to do next to nothing in March. We have been working our asses off working to get through this chemotherapy period. Now is not the time when we need to be raising expectations on ourselves.

When I talked to a psychologist two weeks ago, he advised me to "take two weeks off." Immediately. Because we have been living through a four-month crisis and we have been carrying a lot of stress and the body can accommodate that for a while, but only for a while, and also at a cost. So, he said, "You need to give yourself time to decompress. Just sit around and stare at the ceiling. Give that buried stress a chance to come out and be released."

So that is what I am going to do. I'm taking two weeks off, starting March 7th, then likely two more weeks off after that to be home with Kate in the post-mastectomy period. Four weeks off. To do nothing.

This, of course, requires a doctor's note, and my GP was glad to give it to me. Post-traumatic stress, of a variety. "The army doesn't leave soldiers on the front line forever," is what he said. "You and Kate have been on the front line. You need a rest."

Personally, I feel less acutely stressed than I did in October, say, but I also feel exhausted. Bone tired. I feel cranky, emotionally sick, tried in patience, on the edge of volatility, running on fumes. I am also, of course, breathing a sigh of relief. I am happy. We are happy. But there is no peace dividend. Life, at this point, doesn't simply return to normal. What is normal?

I like the decompression metaphor. We have been in outer space. We have been given the opportunity to return to earth. But we're not there yet. And we can't go straight back. We need to spend some time in the decompression chamber. We need to recognized that we have been living a compacted reality and there is risk in unpacking that compression too quickly.

That is some of what I am going to be thinking about in March, when I sit on the couch and stare at the ceiling.

The Fourth Week

2011-02-22T20:19:00.000-05:00

Not since November 4th, 2010 has there been the prospect of the fourth week. That is, the week that follows the three week cycle of chemotherapy. Life rotates around a tiny little world of three weeks - constantly returning to the starting point. Like le petit prince on his tiny planet, rotating. Weeks one and two are hideous, and entirely forgettable; week three in the cycle might be better, with normalcy returning somewhat - but the longed for fourth week does not arrive - the planet is back on its three week track, to week 1, again and again and again.

So now we are faced with the mysterious week four. What will it bring? Will it be like the day after Christmas? Grey, sort of a let down, boring? How will we fill it? Will normal things - phone calls unreturned, emails unwritten, the news unwatched, chit chat about the future unspoken - fill in the cracks, crevices and negative space left behind by the first leg of this journey? Or will the week spring forth, ever cheerful towards week five, with the possibility of health, robust shiny health, looming closer? As it turns out, week four is March Break - the time when students pause, break free from their bonds, and relax. The kids will most likely be going to Ottawa for some friend visiting with Dad, and Michael and me will be going to the country to hang out in a remote farm house by ourselves.

Very unlike any week post November 4th. Probably unlike any week of our entire marriage, or even - our lives. We will have solitude, room to breathe - and be there solely for each other - with the absence of physical or emotional threat; cancer will not be at our throats, gnawing away at some part of us. Between now and week 4 there will be one minor procedure - the removal of the godforsaken portacath. However, we both know this is minor. We have been taken down by worse. So, here’s to the possibility of week four, of the quietude it will bring, and the time to allow the healing to begin, on this the next leg of our journey.

KO

Ring them bells

2011-02-18T20:01:00.000-05:00

The chemotherapy is over!!!!!!!!

Today was the 6th and final chemo. At PMH, when you finish your final chemo you get to ring the ship's bell.

Let them ring!

Other updates: surgery for mastectomy, March 23. CT-scan, Feb 23.

Spring: March 21.

But the fighter still remains....et merci pour l'homard

2011-02-15T20:49:00.001-05:00

Tonight I had a view to another time from my life - Simon and Garfunkel and Lobster (capital accorded due to my love of the bottom feeding beast and those fine young boys from my youth.)

Dinner: Lobster omelet, normally verboten since the husband is allergic, but he did not partake (with ENORMOUS thanks to Bob and Yvon for the gorgeous, lovely, rich and fabulous canned NB lobster, WOW, and of course, Michael for not eating it)

3 eggs
dash of water
2 mushrooms, chopped finely
1 shallot, chopped super fine
3 tbsp butter, 1 tbsp olive oil (ok, those are guesses as to amts)
a big chunk of fresh canned lobster -about 1/4 cup- and NO, I will not share
a bit of really old grated cheddar (about 1/8 c)
fresh ground pepper

1. melt butter, med heat, non stick pan - add oil
2. chop shallots, mushrooms, throw in butter and oil combo
3. add big fat flakes of gorgeous lobster. Try not to eat it ALL before it goes in omelet. add other stuff.
4. Beat 3 eggs with splash of water
5. throw over good stuff in pan - cook.
6. when all is bubbly, nothing is watery, flip expertly onto one half the pan
7. throw on plate, garnish with nothing.
8. eat with GUSTO. let it dribble down your chin and relish it.

Michael bought a CD - Bridge Over Troubled Water and we played it loud.

For those who ask me now - WHY have your breast off and lymph nodes out, now the chemo docs say - "no evidence of disease"? Well,

In the clearing stands a boxer
And a fighter by his trade
And he carries the reminders
Of every glove that laid him down
or cut him till he cried out
in his anger and his shame.
I am leaving, I am leaving
But the fighter still remains.
(Simon and Garfunkel, 1968, ironically, the year I was born.)

I remain and I fight because the experts tell me this is the course, the arena, the final battle. Eradicate. Erase. Pathologize. I cannot possible leave it at this point to the fates, or the marauding cells. The reminders of every glove of chemo, painful cancerous cell.... I am in charge here. This is my body, and I will take it as it comes, but it has to be cancer free.

xo KO

On and On You Will Hike

2011-02-14T17:16:00.004-05:00

On and on you will hike

And I know you'll hike far
And face up to your problems
Whatever they are.

from Michael to others through email - I can't summarize it any better!!!

*
Kate’s bb is having some issues, so I’m sending you a quick update.

All good news today. Dr. McCready and his assistant both reporting finding no evidence of disease. Best case scenario is that cancer is gone, though this can’t be confirmed until pathology following surgery.

They recommended full mastectomy by end of March (including removal of lymph nodes), with follow-up with Dr. two weeks later. Radiation after that. Drug therapy (tamoxifen for 5 years) following that.

Meeting with radiologist following surgery. So not much more information on that.

Port-a-cath to come out around end of February. Hospital to set that up and call with appointment.

No new tests suggested, but a CT-scan will be set up to investigate what was previous “of interest” on Kate’s liver. Doctors today not much interested in that. Likeihood is whatever was there was zapped by the chemo, but the CT-scan will confirm. If it is still there post-chemo, it may be of interest.

Kate back to PMH early Wednesday this week for final pre-chemo bloodwork and meeting with chemo oncologist (Dr. Buckman this week). Andy is going to take her.

*

from Kate

Tears of gladness, and elation, and pure joy. Possible? probable? God, is it too much to ask for? We live in hope, and face up to our problems whatever they are.

*

Later, below, from Michael

It is nearly 10 pm now, Valentine's Day. Everyone is asleep, but I want to fill in some more detail. The above is the general summary. It is good news. We are pleased. We told the kids "the cancer is gone, but there is still more."

Strangely, perhaps, the day began with the kids coming here before school, mad that we were away all weekend without them. Both complaining that Mummy does "nothing" all day. She is sick, I said. When you have a cold, you rest, too.

She doesn't have a cold, Naomi said.

No, she has something a lot, a lot harder, I said. But it is too much for the kids to comprehend.

Owen was struggling tonight with "the cancer is gone" and "there will still be surgery." The process is not over, but the risk has dropped significantly. There are things of great importance that are too subtle for the kids to understand.

We just said, Today is a great day. Today is a happy day. We were happy and the kids soaked up that happiness, though Naomi whacked herself once in the head and twice in the shin this evening and went to bed with a dose of headache medicine and a bandage wrapped around her leg. Went to bed beside Mummy. (She began the day responding to a Valentine's from Mummy with a note saying, "I hate you," then ended the day handing Kate a note, "I love you.") We tell her constantly that we love her and encourage her all the time to express her feelings, whatever they are. Whatever can this situation be, except confusing.

At the hospital today, McCready's assistant (another fabulous young doctor [and, Kate said, "very handsome"]), asked how Kate was doing. Asked how the chemo was going. Said "I'm sorry to hear that" when he was told, "It's been hard."

Then up Kate went onto the bed and the handsome doctor examined the area. "Congratulations," he said. "It's great to have such a good response to the chemotherapy. I don't feel anything. That's really great. I don't feel any 'disease.'"

He went on to say everyone responds differently to chemotherapy, and for some people it's still possible to feel some of the disease. He spoke of the need to provide Kate with the full "standard of care," which means proceeding with the mastectomy "unless you feel otherwise." Kate shook her head. Full standard of care. Take it off.

Discussion about risks of surgery. Standard. Infection. Lymphodema. Doctor estimated risk of lymphodema at less than 50%. If it does happen, the hospital has a lymphodema clinic.

Discussion about new tests. No need for MRI. What about that liver thing that came up on the CT-scan last time? Will check paperwork and raise with Dr. McCready. Will go get Dr. McCready. Five minutes later, in came the world-class specialist.

Dr. McCready examined Kate, in front of the handsome young doctor and another handsome young intern. "I can't find anything," he said, "though that doesn't mean there's nothing underneath." He went on to say that he wouldn't expect to find anything underneath, given that the chemo had disintegrated the larger tumours. One could expect that the smaller bits had been crushed also. But one couldn't be certain until the breast is off and the biospy is done. So no absolute confirmation until two weeks after the surgery, which McCready would like to see done before the end of March.

Interestingly, I thought, McCready also said some women stop the chemo after the first "D" treatment. That was the hardest for Kate, yes, but she pulled through.

McCready said to stick around and do the paperwork for the surgery. He said he could help arrange to have the miserable port-a-cath removed early (end of February-ish). He said he would repeat the CT-scan to check up on what's going on with the liver, though in all likelihood the chemo has probably cleared it up.

Discussion about when to start tamoxifen. Before surgery. After surgery. After radiation.

Discussion about radiation. Need to meet with radiologist after surgery to work out a plan.

Most likey plan is start tamoxifen following radiation, but lots of time yet to sort that out.

Kate to see the famous Dr. Buckman this coming Wednesday in her final pre-chemo checkup. So next steps are:

Feb 16 - pre-chemo bloodwork and check in
Feb 18 - final chemo
End of Feb-ish - surgery to remove porta-a-cath
March - CT-scan
March - pre-surgery bloodwork and cardiogram
Late-March - mastectomy
April - consultation with radiologist

The surgery includes one night in hospital and 7-10 days of draining ooze and nurse visits to the home. And one full breast removed. (We double-checked the paperwork today to make sure they take the right [left] one.)

Our expectation is that the radiation could go from May to August, but we don't really know.

The tamoxifen treatment lasts for five years.

We plan on being around for a lot longer than that!

Air band, stamps, snow, and quiet - The beauty of good old friends

2011-02-13T12:57:00.002-05:00

"I do not wish to treat friendships daintily, but with the roughest courage. When they are real, they are not glass threads or frost-work, but the solidest thing we know."

- Ralph Waldo Emerson

So, have not posted in a while, but thought it was about time so folks know things have improved immensely from last chemo. The first week post chemo was not bad at all. Really, new meds and prospect of it all being over very very soon has helped immensely. I feel somewhat buoyed up now, at the doctor's visit Monday, and getting out of town for some R/R.

This weekend, we are in Ottawa without the kids - but with our friends. We are doing some serious relaxing and resting. Not even really leaving the house(s) much to explore the lovely fluffy flakes, the wonderland that is Ottawa right now. Great temperatures for getting outside. But no canal, no beaver tails, just peace and quiet, the most excitement is the occasional cardinal flitting through the beautiful trees we see through the vistas from the big bright windows, onto a lovely garden.

Sandra and Patrick have tended our souls so nicely - allowing for a lot of quietude. We are reading, chit-chatting, eating yummy things, and resting. Dinner on Friday was lovely - Risotto, yummy salad, soup - all super delish. Good old pals Joy and Andy importing their normal levels of fabulous energy, love, and humour. And a wicked good almond cake. With boozy whipped cream. Yum.

(Yes, you may note the increase in discussion of food, drinks, etc as it tastes like food to me now, and is a miracle for me to behold after some serious deprivation in this area).

Did same on Saturday at the house directly behind - the other reason we come to Ottawa, Chris and Sherry - with their lovely band of brothers. Stamp albums, and coin collections hauled out to review, “tradesies” discussed, and a review of all the family photos from the past year, trips, hockey games, school pictures. All needs tended too -

Steaks, to boost my anaemic iron levels
Cocktails to boost my “spirits”
Cupcakes to celebrate my upcoming birthday….awesome. With boiled icing, fluffy and light, with sprinkles.
A new pink hat, with fancy flowers, to keep my noodle warm

The addition of the Globe crossword (in pen, and with some cheating with apologies to the much more rule based crossword doing McPhail clan), and once dinner was over, retreat to the basement for some serious Air Band. But I think it doesn’t even count as Air Band - since we had drum set, real guitars, mikes and sound system…..and we were really singing…ok, making a lot of noise. Fleetwood Mac, Blondie, The Cars….classics from our youth. Mike and I are considering some new equipment for our own basement - it was seriously fun belting it out. Seriously. Letting the hair down - ha ha.

And now, a quiet day, a visit from Helen, my "Can-mate" [rooms 338-340, 3rd Grenvlle Women's Residence, Carleton University 1986] - we neither feeling we are looking much different. Except she still has hair. One concussed child, a trip to Bulk Barn for red icing for Valentines, stopping in on an old friend with cancer, a normal day for so many people right?! But Helen is Helen. Takng it in stride. As we all seem to do these days.

Time to be still. Relax. Read. Rest. Chat.The quietude of friendship.

As good old George Washington said "True friendship is a plant of slow growth, and must undergo and withstand the shocks of adversity before it is entitled to the appellation."

xo
KO

Ottawa Here We Come

2011-02-10T22:57:00.001-05:00

by Michael

Tomorrow, Kate and I are flying Porter to Ottawa, returning Sunday. The kids are staying with their dad. It's a break in routine, one that we're glad for (the kids not so much).

Very much looking forward to it!

On Monday, Kate goes back to see Dr. McCready, the surgeon, who we expect will help us understand what may happen next. Tests. Surgery. Whatever.

The past week has been, on the whole, relatively normal. Within what passes for normal around here these days.

I went to see my doctor today. He said if I needed to take one week off, two weeks off, three weeks off, it could be arranged. Wait and see what Dr. McCready has to say. Figure out what would work best.

We'll see.

I had a chat with a psychologist through the Employee Assistance Program earlier in the week. He encouraged me to take two weeks off. He recommended the book Deadly Emotions by Dr. Don Colbert. He also recommended oatmeal with bananas and walnuts, vitamin B complex and Omega 3 pills with fish oil. Plus regular exercise and hitting a pillow while verbalizing anger (do this in a room alone).

Hmm.

I also went out last night with my friend Mark and talked about books. We were at The Only Cafe on Danforth, where I first went in the late-1980s. It hasn't changed much, though the men's bathrooom is now on the other side of the basement hall and it's clean. This was never the case previously. (Previously, it looked like a place where Keith Richards might have shot up.)

The Only Cafe is where Kate and I had our first date (where I famously wore white running shoes). Today is another anniversary, the 4th anniversary of me meeting Owen and Naomi. It happened at the ROM on this day in 2007.

Four years later, look at us now.

And now, ladies and gentlemen, The Beatles!

Both Sides Now

2011-02-04T22:36:00.002-05:00

by Michael

First, Joni Mitchell is The Greatest Canadian.

Second, this is going to be a short post about the mind-body problem.

From the beginning of this cancer journey, Kate and I have talked about how there is both a physical and mental/emotional part to this disease. Recently, we've talked about how the physical part is going well (according to all the evidence we have so far), and the mental/emotional part is ... really fricken hard.

Two weeks ago, I went to my doctor (because I'm checking in with him regularly now) and told him how things were going. Among the things I told him was the fact that Naomi is very angry at the moment. The disruption to her routine has pushed her beyond her limits. She's convinced Mummy is going to die and she's fed up with visitors and she is, I told my doctor, "pissed off."

And because he's MY doctor, he asked, "And how are you? It's okay for you to be pissed off, too."

I am pissed off, too, but I'm an adult and have a better ability to cope than a six-year-old, so I'm not acting out so much. Actually, I feel, on the whole, pretty good. Though not operating on a full tank.

But Kate is suffering. I think anyone who's been following recent posts can tell that. (We are all suffering, to one degree or another, though Owen goes around seeming joyful. How does he do it? His role in this family has often been the opposite!)

Mind/body. It's a problem for Western Philosophy. Read all about it on Wikipedia. It also plays out in real time every day everywhere.

Mental health. Not as easy to talk about as even cancer.

Mind/body. See it from both sides now.

I've told Kate that I take the rehabilitation of her mental health every bit as seriously as I take the rehabilitation of her physical health. It is no less complicated.

I have been very well supported at work these past months in being able to do my job and also disappear when I need to. Accommodation. Balance. It makes a huge difference when those supports are there.

So thank you, thank you, to all who make up our circle of support. As Kate said in her last post, we now seem to be in a type of transition. The chemo is not over. And the final chemo may be extra taxing. But soonish that will be over. Then what?

The unknown brings new stress. Kate has an appointment with Dr. McCready, her surgeon, on February 14, Valentine's Day. We haven't seen him since October. He should provide some clarity about what tests, etc., loom on the horizon.

But as the future of physical health seems to clarify, the future of mental/emotional restoration remains a journey uncertain. Which doesn't mean I'm not wildly optimistic, because I am. It just means I don't know how we get from A to B. Or when. I think we don't rush. We honour the process. We will arrive, I have no doubt.

We have seen things from both sides now. We are headed back to the land of health: physical and emotional. I don't expect it to be a swift journey. But I do expect it to be ripe with meaning. Insight. Learning. Wisdom. All of those philosophical crap shoots. The crunchy granola bits.

There's a Bob Dylan song about this. At least one.

Wednesday February 2, 2011. Groundhog (Woodchuck) Day.

2011-02-02T18:27:00.003-05:00

First, this requires a recipe, since I have long forgotten to include anything food related to this blog.

Woodchuck, also known as groundhog, should be handled in accordance with the general rules for game in the field. The blood should be drained, and the entrails removed and the body cavity wiped clean. When hung for 48 hours, they are ready to the skinned and cooked.

Woodchuck meat is dark, but mild flavored and tender. It does not require soaking; however, many people like to soak it overnight in salt water. If the woodchuck is caught just before he begins his winter sleep, there is an insulating fat layer under the skin. Remove excess fat. remove 7 to 9 "kernels" (scent glands) in the small of the back and under the forearms. Parboil the meat of older animals; cook by recipes calling for chicken or rabbit.

Woodchuck Fricassee

Clean game and remove all the fat. Cut into pieces, rub with salt and pepper and roll in flour. Cook in hot fat until brown. Add two cups of water, cover and simmer for 2 hours or until tender

from wildliferecipes.net

Irony today. Longer days, less pain, the possibility of a cancer free future. A beautiful winter storm - fluffy flakes, and dear Sarah has had her baby girl in the midst of it; the promise of small and delightful pleasures, cuddly babies, and of spring to come in the shape of the Stokes Seeds catalogue.

However, I am too depressed to even sprout one tear and cry. I am lethargic, withdrawn, unpleasant in my skin. I sleep hours on end. My bones hurt, in jagged spurts. I have turned the shade of grey all cancer patients turn. Our lips are whitish, we have fuzzy heads, we look like zombies with no hair, with hollowed out necks and cheeks.

But the news is good. I am recovering. Fantastic!!!!

And so it often goes when the cognizant mind receives signals to slow down, or the pressure comes off, or respite is provided after a long drawn out period of pain, (like getting a nasty cold the day after you start your 3 week vacation), ironically, the body goes into a state of shock and deflates, withdraws. Hey, good news! Fantastic! Then descent, depression, the physical manifestation of the mental or inner turmoil written on the body. Why? What is this course we run on? Maybe it is due to the fact that the battle which consumes us at our every waking hour is abating, allowing for real feeling to bubble up? Maybe it is fear - we are afraid of whether we can handle the life we had before. What then? Fear of getting it back, fear perhaps of not wanting it. Will I go insane in that life?

And fear of the next steps.

When we talk of next steps, Michael and I cavalierly talk surgery, radiation. But there is more there, deeper currents which must be addressed in order to move between the worlds of recovery and pain. The psychiatrist who walked me through the last massive depression- induced changes in my life, re-engaged to assist again. Kate the non-joiner is reluctantly contemplating Dr. Buckman’s group therapy, about finding normal again. Other people must feel this, do this, know this? I know we need to get Naomi to Gilda’s Club so she can see her hostility towards me, the cancer, the world - is all part of a normal cycle.

I can never seriously recall if the ground hog's shadow is a good or bad thing. It seems so simple, but I forget it every year. I just want spring. And warm. And hair. And a tinge of colour in the skin. And to not be afraid I will be caught and fricasseed.

xo KO

Penultimate Chemo - down the hatch

2011-01-28T15:46:00.001-05:00

And only one more to go!!!!

Frequent flyer Kate has become a pro at this. Snack bag - check. Crossword - check. She now recognizes other "guests" in the waiting rooms, stops for chitty chat; now knows which nurses to avoid for blood work; and also knows which to look to for drug input (Sammy). New twist today, I had ice bags kinda like slippers on my hands and feet. Not as uncomfortable as you might think. Andy took a picture will ask him to send it to me. Some kind of freak of medical science, for sure, anyhow. Chemo fashion is really nice.

I have taken a whack of pre-emptive anti nausea and pain meds - to counteract any symptoms which might come - like waiting on the ramparts of the castle for the marauders. Boiling oil at the ready. Or maybe dead cows. Fetchez la vache!!!

But, I am still upright. Still clear headed. No gut pain, back pain, finger pain, head pain. We will monitor for any tweaks or twinges, and by god we will then blast em right away......No messing with me this time. Final stretch.

I cannot wait for this to be over. So, of course, I can have the surgery. Such is the business of keeping afloat.

KO

PMH Visit - Jan 26

2011-01-26T21:41:00.001-05:00

by Michael

I went with Kate today to Princess Margaret Hospital for her pre-chemo #5 hospital visit. Not sure what was up at PMH today, but for us it has been a very efficient place (on time, in and out quickly), except it wasn't that way today.

Kate had a bloodwork time of 10:00, but didn't get in until after 10:30. Then a 11:15 time to see the doctor, but didn't get in until close to 1:00 pm. Then we had to visit the phramacy, and they made us wait until after 3:00 pm.

So we left home at 9:15 and got back after 4:00. A full day. I had booked half-a-day off work, but by late afternoon decided I was going to go straight home.

All of the medical new was good, but for a 10 minute visit with the doctor it was a long freakin' day.

In short, the medical news was the cancer has been all but obliterated. The nasty side-effects Kate had with the last round might be mitigated in the next round by some new meds she got today. She is "slightly anemic," but good to go for a full whack of chemo this Friday.

Current schedule is sixth and final chemo will be Feb18.

Next steps are for us to contact the oncological surgeon, who will schedule a new round of tests (MRI, mostly likely, maybe others). Then he will advise about likely surgery, likely radiation treatments.

Doctor today talked about tamoxifen, but then realized he was getting ahead of himself. Kate needs to be referred back to the surgeon before potentially progressing to hormone therapy.

So all of the news from here today is good, but we are tired. Spending hours and hours at the hospital is exhausting if only because it is a constant reminder of the seriousness of the enterprise.

Of course, the delay meant we weren't able to pick up the kids at 3:30 after school, so we had to scramble to make arrangements. (Thank you, Belinda!) How we all hunger for a return to simple routine.

Up and Down: Year of Magical Thinking

2011-01-25T20:28:00.003-05:00

by Michael

I know this is Auntie Cake's Blog, but from time to time I'm grateful to be allowed to chime in.

This past weekend, I made a comment to Kate about "insights" I've been "given" recently, thoughts prompted by watching her get sick, get well, get sick, get well, get sick, get well ... on a three week cycle.

Yes, it's awful to watch. Yes, it's psychologically draining to get to the end of one cycle only to know that it's going to repeat. Kate gets to the point of feeling well, and yet you know within days she's going to get another "treatment" and be smacked down by a wall full of chemicals.

And, yes, too, we are grateful to those chemicals for turning the "lump" to "oatmeal."

This is the great contradiction of cancer care. You need to get sick to get well.

All of us in the household go up and down on these swells as well. We work hard to maintain our normal routines, but at the moment there is no such thing as normal. This is our year of magical thinking (as per Joan Didion, merci).

All of us in the household are sick. One of us has cancer. Three of us have stress.

In general, the kids have done remarkably well. But they are tired. They let us know this in various ways. I don't want to say anything about either of them that is personal or detailed.

I wanted to write about my "insights."

First, we realized early on that we needed to cut back. Focus on the essentials. The guinnea pigs had to go. Our life became more tightly regulated by the routines of getting the kids to school and back.

"What did we worry about before you had cancer?" I asked Kate. The anxieties we used to have seemed to disappear.

The pleasures of "ordinary life" amplified.

Yes, we tried to keep the kids doing homework, completing projects, going to drama class.

While the kids' lives marched along, ours seemed to be in "pause." "After we get through this ... " many of our phrases began.

I kept going to work. The routine was stabilizing. We heard about the cancer in September and for the first two months I was in a state of shock. By November I found I wanted to go back to "feeling normal." This was not an easy thing for Kate to hear, but it was important to me. I needed to find my feet, and I did.

Strangely, while work has been stabilizing for me, helping me get away from "the cancer;" it is also true that the cancer has brought stability to my workplace personality. I can no longer get worked up about administrative troubles. The ebb and flow of workplace miscommunication and interpersonal anxieties, etc., etc., leaves nary a mark on me. I simply do not care. (Focus on the essential. Ignore the rest.)

At the beginning of chemo, I was terrified. It has not been as bad as I feared. This also hasn't been an easy thing for Kate to hear, but it isn't a diminishment of what she's gone through. It's a measure of my terror. There have actually been "ups" amongst the downs. I was afraid of down, down, down, down.

I was afraid of the kids falling apart, and they haven't. They have struggled, and struggle still, but they have shown me that they have great depths of resiliancy. This is an important lesson I must remember.

Kate's "ups" have shown her resiliancy, too. (And her writing on this blog has shown her remarkable depth.)

"Reality is not a problem," my friend Phil told me recently. I agree. We have tried to "keep it real." We don't try to pretend that this isn't happening. It is happening. It is unavoidable. Living in the real is the best life of all. ("All we really have is today," said Owen's psychologist.)

Even within the ups and downs of chemotherapy there is lots of laughter. Even (sometimes especially) within the ups and downs of chemotherapy are "coaching moments."

"What a lot these kids have had to deal with," for example, we say. "What strength they are drawing from adversity."

Yes, I have worried more about the kids than about Kate. I have worried lots about Kate, too.

And Kate has worried about me.

Yes, I need looking after. I am not immune, not a "Superman." Finding my feet, finding the "real," finding the "essentials," focusing on process and moving forward one moment at a time; all these help.

But sometimes all that helps is a long sleep.

My comment to Kate on the weekend was along the lines of, "We have tried to focus on the essentials, but when you are down in the depths of chemo hell, even the essentials are too much." That's what I witness, watching her. Even the basics of ordinary life are too much.

There are dark, dark moments in life; they are mean; they are awful; they can be gifts of reflection, knowledge, wisdom and experience also.

This is in the Kingdom of the Unwell. Per Susan Sontag. Per Kathryn Marie O'Rourke.

Isn't she great?

p.s. Only two more chemos to go! (One of them this coming Friday.)

POSTSCRIPT

Kate said, "Can you amend this bit? All of us in the household are sick. One of us has cancer. Three of us have stress." She wanted me to write: "Four of us have stress."

"You don't have stress," I said. "You have cancer-related fatigue!"

Those Clone Wars people....

2011-01-18T18:04:00.002-05:00

Damn them, they did NOT get permission to use my likeness....How crass. They will be hearing from my lawyers.

2011-01-18T00:03:00.001-05:00

Have you ever noticed that there are really only three types of products advertised on TV after 8 pm?

1. Food - in all it's glory- cheap and cheerful fast food, pizzas loaded with gooey deliciousness, restaurants, bacon, cheese, celebrity chefs making tasty sauces - happy people drinking wine or baileys; I hate these the most as my current cream of wheat with almond milk diet is not so, uh flavourful. Ah, Cruel World!

2. Hair products. For people with already luscious flowing LONG locks. Bitches!

3. Cars. I don't care about these. Except when the driver's flowing locks stream through the window or they stop at a drive-through for food.

Sigh.

Hitting the Wall and Bouncing Back

2011-01-16T12:53:00.001-05:00

This cancer thing is riddled with bad euphemisms and turns of phrase. As well,there is an amazing panoply of terms for symptoms, treatments, potions and lotions - a veritable encyclopedia of pharmacopoeia exists to describe the acts and props - soothe, heal, ease, reduce, fight, battle, overcome, subdue.

Also a lot of normal words, that strung together are frankly absurd. I said to Michael the other day, no one would ever say to a well person -

"soak your finger tips in ice chips as many times as you can throughout the day." I am sure that under normal circumstances it is against the Geneva Convention to submerge people's body parts in ice, except of course, in professional sports. It should be. But it really does help relieve the pain, and will, ahem, assist in "nail loss prevention." Something well people have to worry about a lot, I am guessing. Yes, even the fingertips are not immune. They are numb, like you stubbed each and everyone on the fridge door.

But the one that seems apt, true, even is "hitting the wall".

In the 1993 [i think brilliant] movie Fearless, by Peter Weir [my favourite director], Jeff Bridges cheats death in a plane crash, and thinks he has become invincible. At one point he literally "hits the wall" in his car to prove it. He drives his car into a wall. Volvo product placement. True. But the OTHER person in the car lost her child in the crash (plane not car), and she wants to throw in the towel, give up, stop. Not die, but stop. So he drives her into a wall.

But the theory of the metaphor [and excellent Hollywood story ending] is that once we hit the wall, we bounce back. We recover. We look deep into the darkness, and find the means to move forward.

I was staring deeeeep into that dark hole in the wall - last night - day three of not keeping food down, blinding migraine headache, nausea, perpetual internal aggravation of some kind. At a complete loss for words, thought, movement. One thought emerged- Enough. I have hit the wall. This is it. The point where it can't be any worse. I can't feel any shittier. I despair of this state. When your eyeballs burn from crying and your throat seizes up from vomiting, and the room is spinning - for what seems like an eternity - I see how people give it up. of course,of course, you want it to stop. I did. I was an empty tank.

But you don't. Michael held my hand. I rallied. Simple, yet outrageously Herculean of us, frankly. I am astonished. What a team.

And here I sit. No headache. No nausea. No way. Really? I won't be driving my volvo (don't have one) into any walls - but i feel, um, somehow, more confident in my ability to "bounce back."

xo KO

Our Lesser Selves - ode to a barefoot snowplow stealer

2011-01-13T10:14:00.003-05:00

It is boring as shit to lie down all the time but standing up gives me a headache.

But there is more to this than me vertical or horizontal. I hope to have it out there clear enough by the end of this post I thumbed mostly lying horizontal.

There is an impoverishment to my movement and thought - I simply cannot muster brain cells to respond or move in response to stimuli. Normally by now post chemo session I would have a few posts under my belt but this second phase of chemo (D or taxotere) is a physical smackdown. I mean in comparison to a nausea-centre of gravity hitting smackdown (Of FEC- the triumvirate of poisons. My bones hurt, seriously almost every one at some point; but worse, my head hurts - to the point that laughter smarts. Now that is cruel. Or perhaps divine retribution for the years of my own cackling into unwilling ears? Thinking too, hurts. Reading causes spasms of pain.

I have not felt sick. No nausea. No waves of illness. No gut wrenching digestive tract issues, no gums to bum trauma. Until last night when the body rebelled against the percocet/meds build up in my system and sent me dashing off for "barf" relief. (Such a childish but great word!!) Thank god the cleaning ladies had been - a clean bowl.

Ironically I had been craving a big mac - which arrived mid-thrusting - and once cleaned of its chemical poisons and suitable to sit at table my body sat down and heartily ate the lot. Yet more proof of my diminished capacity of mind. But mostly - this past week I was just tired- like someone (cancer is easy to anthropomorphise) is depriving my body of oxygen. It is lie down and sleep all day tired. And I do.

Food and beverage enjoyment has really taken a nose dive too. All seems to taste the same; all is heartburn producing and shmecky tasting regardless of the wafting gorgeous smells and rich melty consistency of all the good things brought forth. OK, but MacDonalds tastes fine - all is right in the world.

The kids pop in and out, bobbing, kiss my head, retreat with their usual sing songy voices - off to school, whatever they are skipping too. To my delight they sometimes bring their colouring or reading and sit with me- which is nice. I hear brief snippets from their days:

"Teens are stupid mum."

"I will never smoke marijuana."

"Mum, Jake and I make up our Monday morning "what did u do this weekend" stories together- right before class, Is that bad?"

"I think so and so likes so and so."

"When can I have a sleepover at X's house?"

I long for a hot summer day with my hands elbow deep in dirt and bees droning overhead and a cold glass of sauv blanc that I can actually taste. Not bitter metallic water. My folks are here so "normal" life continues apace around -laundry, food, homework etc plus dad and his projects- putting up walls fixing things etc.

Which brings me to the real point of this post. Yes, there is a point roiling around in this pot. Related to the land of the unwell, how we deal with it, and our willingness to embrace the hideousness of things around us.

I have a disease that rips tears and shreds- innards, as well as things outside my body - things are rent asunder - relationships, jobs, lives. I have a disease which creates discomfort and ill ease for many without the affliction, since it is also a mirror.

Looking at someone with cancer is like looking at your own potential death. You are looking into a portal to an unknown course to the kingdom of the unwell - with catastrophic and unpleasant outcomes. The sick are seen (when they are seen at all), in our world, generally in society as lesser beings, we have absorbed this ideology of the sick, the weak, as Carl Jung says "our lesser selves" whom we hardly address. Our greater selves thrive in the artifice of society - if time, luck and chance permit.

When a clearly unwell man with no shoes in deepest mid winter takes over a snow plow and mows down people, killing and maiming, he is the perpetrator of a crime not a citizen of the unwell. True, he is both. He is being treated "Hypocratically", the same as the other victims of his outrageous behaviour. But I believe our compassion is troubled by such required extensions. It is perhaps too hard to extend our thoughts, busy with their current afflictions and day to day details, to embrace this "lesser self". He is not a well-educated mother of two in the throes of breast cancer. That we can grasp. How horrible. No, society tends to see him as a lunatic, gripped by malevolent forces. We will probably never know what makes/made him unwell. Nor will many care. Clearly, his lesser self got the better of him.

Jung once said "if people can be educated to see the lowly side of their own natures it may be hoped that they will also learn to understand and to learn their fellow men (sic) better". I know that people do try - because we face down and sometimes embrace those lesser selves - in order to help our friends and family who are sick. Sometimes even for strangers too. The entire oncological world does it everyday. Because of it, a world of love and care, beauty, kindness, and strength has grown constant around me. I in turn, will try to spread it around too. But I battle with my own lesser self - bald, bloated, unable to parse, cranky, sometimes a horror-comic of terrible thoughts. And I am sure we all do when we look and see imperfections, craziness, or lunacy. We try to spread the good stuff around.

I have the luxury of adoring, perpetual and consistent care 24/7. People thinking, and praying and doing. In this I am so overwhelmingly blessed. My hope is that the barefoot snowplow stealer has that too. But I doubt it.

xo KO

Chemo #4

2011-01-08T21:07:00.000-05:00

by Michael

A short post to continue the post-chemo updates (#1, #2, #3 here). Kate is now 2/3 done. Only two more treatments to go. The first three were FEC; the final three are "D" or taxatere. The difference between the two type may be immaterial (generally). That is, the doctor said the new treatment will "attack the cancer from a different angle," but Kate's post-chemo experience "shouldn't be all that different from the FEC cycle."

We'd expected "more fatigue," as that's what the literature said. Kate had the chemo yesterday, and so far she reports "a different type of tiredness." Hard to put a definition on it. She was up today. Shoved the snow off the 24 stairs to our front door, even though I told her not to. Then this afternoon we went for a longish walk. She is alert, but tired. Feeling something she isn't quite sure yet how to describe.

"Thick Oatmeal"

2011-01-05T21:13:00.000-05:00

First, thanks to those who called, emailed or checked in some way post blog post yesterday. It was a dark post. It was a dark night, truth be told.

But, I am ok. I will be fine. You should know that by now, I am rubber, resilient, built to last. I fight like a GIRL. It is always darkest before dawn. I did not move davenports, chests, or anything overly large which might cause bodily harm. I moved books, and stuff. And settled a few personal issues with picture placement while the house was empty.

Flying solo at the hospital was also not super fun, but as luck would have it Amanda, who works at PMH, walked on by and I clung to her for a wee bit. Kindness personified she was, and right there mid stairwell, on her way to a meeting. She also indicated that there are always LOTS of friendly faces at PMH, just ask. Reach out. Then appointments, yada yada, and then spicy peanut chicken at Spadina Garden with CD and gossip, and all manner of hilarity.

So, to the oatmeal thing. This is the very word used by the doctor to describe the large masses previously known as my cancerous tumours. "They feel like thick oatmeal." I am astounded that they have shrunk from such beasts down to such mealiness. WOW!! This is a new year's eve moment, for real. I am elated. I am over the moon. I was expecting the usual report backs from the doctor on white blood cell counts (good, good and good), and the "how are you feeling", and all that stuff. But not "oatmeal". Digging deep, searching for tumours, and finding - well - dispersed particles of disease. I am a bit astounded. A bit disbelieving. Hard not to be....

Oatmeal is my favourite food!!!!! Ok, I love it anyway. Dad makes it for (me) us when he is here...the best cuppa, and the best oatmeal.

I know that whatever comes now is going to add fodder to the cannons, and blast this plague right out of me. I am a cancer-combating Amazon!!!!. Uh....ok, with delicate skin. So, over time, this frame of mine apparently has lost enough weight to make the port-a-cath unusable - the nerve are too close to the surface as it has shifted. It grates under my skin, very close to the surface. It looks like a really big Smartie right there under my skin.

Now, I can bear a lot of pain (hello! natural childbirth!) but I almost passed out cold when the familiar sucking sound of the vacuum needle pierced when I went for pre-clinic blood work. Yeah, gross. God in Heaven, who knew the skin could be so tender? Poor Virginia the nurse. Oh well. so much for that. Intravenous from now on. No way am I doing that again. It STILL hurts from my blood letting. Surely to God leeeches would be less painful.

So - HAPPY NEW YEAR!! And raise a glass to OATMEAL!

Let the tender amazon sally forth on to VICTORY!

xo KO

Afflictions

2011-01-04T21:36:00.000-05:00

Tonight I sent my husband over to his parents in a cab. He is sick. Fever. 101. We both feel panicked, looking at each other, like, what now? My caregiver is sick. Forgot to read that chapter of the "Handy Dandy" Guide to Cancer... [Sorry, there is a Lucy and Desi episode for everything, I am sure, and the one on "handy dandy" everything is on the brain right now....maybe I should watch??]

I cannot get it, whatever it is. I must not become more afflicted. This may sound self-indulgent, so, ok, sue me. I have suffered enough in the last 15 weeks to make a non-believer religious and fall on their knees and believe again if only to curry some favour and future credit. Cancer sucks. It hurts, burns, corrodes. I hate it. I will work my ass off to help anyone afflicted with this hellish disease, So Help Me God.

I am alone in the house as the kids are with daddy. And speaking of curry, the lovely curry kebabs for 5 [provided from one of the blessed silent chefs in my neighborhood] uneaten, since no one is here to [cook or]eat them.

Naomi just called to tell me of her skinned knee. Her affliction is not warranting the "appropriate" level of the attention from the Lee boys, no one is wrapping her in love bandages, tending what to her seems a river of blood - a scrape, really. But we need to wrap those inner wounds....because they are portents, messages to those listening. I am sad. I hurt. Fix me. So she calls me. Ironic.

I have not written in a while here since there seems no point, saying the same things. I am tired. I am sick. I feel so fucking bored of this endless cycle of darkness and light, up and down, sick, well. It seems so utterly the same - and yet.

And yet I am manic, in anticipation of the new poisons Friday, chemo #4. Manic - doing things I need to do - fix, sort, repair. Heal. Move furniture. Re-hang pictures. I must be a nightmare, perhaps fever inducing!?? I would completely understand. As Michael says, over the holiday, I was a borderline "asshole" . Bordeline. Fair enough. For better or worse. Truly, the only thing worse would be if Michael or the kids were in my place. Better me than them.

I am afraid of these new poisons, if only that I do not know what they are. The meds prescribed beforehand usually provide some idea, as I wise up to the medico-lingo. Oxycontin. Pain. Steroids. Inflammation and pain. Anti-nauseates. Excellent.

My sister says, sit back, take the meds, enjoy the ride. Helterskelter here I come.

So the mantra begins....

When I am feeling sad, I simply remember my favourite things and then I don't feel so bad...
Bright copper kettles, cream coloured ponies, schnitzels with noodles, wild geese that fly with the moon on their wings...Silver white winters than melt into spring.... En shallah.

Cottage Dreams

2011-01-01T14:37:00.002-05:00

by Michael

I was going to title this post "Cancer Fatigue," but, yuck, not going to begin the year that way!

Yesterday, I went to Princess Margaret Hospital to look for information about an organization that helps provide cottage stays to those going through the cancer experience. I found what I was looking for. The organization is called Cottage Dreams; however, I also learned that to access those cottages you need to be 18 months removed from treatment (chemo, surgery, radiation). So we'll look forward to that in 2012!

While at PMH, searching the pamphlet trays, I found six pamphlets produced by the Universiy Health Network:

Cancer-Related Fatigue: Are You Tired From It?
Cancer-Related Fatigue: What Can You Do About It?
Talking to Your Doctor About Cancer-Related Fatigue (CRF)
Feeling Zapped? Learn How to Relax and Use Your Energy Wisely
Relaxation Techniques
Mental Fatigue and What You Can Do About It

Must say, I love that acronym: CRF. The world can't have too many acronyms!

So, yes, Kate is tired. A lot. It's what I say when people ask me how she is. "She's tired." Now I know how to augment that. "She has CRF."

Kate says she has "chemo brain." Her mind wanders. She forgets things. She's irritable. She is how you might imagine you'd be if you'd slept poorly for three months.

The other day someone asked her if it was worse than being pregnant. "Oh, yes," was her answer.

The CRF pamphlet (see how handy that is) says the fatigue can last well past the end of treatment. Oh, joy. More information we really don't need to know. Looking more forward to that cottage in 2012 now.

Anyway, CRF has links here, here, here, here and here. And elsewhere, too. But that's enough, right?

My favourite quotation (from here): "Fatigue occurs in 14% to 96% of people with cancer, especially those receiving treatment for their cancer. Fatigue is complex, and has biological, psychological, and behavioral causes. Fatigue is difficult to describe and people with cancer may express it in different ways, such as saying they feel tired, weak, exhausted, weary, worn-out, heavy, or slow."

14-96%?

Actually, this quotation (from here) might be better: "Cancer fatigue is a common complaint of many cancer patients and can take over a patient’s life if not treated."

This past fall, there was even a Cancer Fatigue Symposium. (This paper PDF seems particularly good.)

My way of thinking about this has been: This is a marathon, not a sprint. I don't know anything about running marathons, except it's an endurance exercise. You need to manage pain and concentrate on the journey not the destination. And people run them all the time.

Kate's treatment started in early November, and it's going to last into the summer of 2011. Our best guess is final chemo on February 18, surgery 4-6 weeks later (end of March), radiation beginning 6-8 weeks after that (May). Up to 12 weeks of radiation. Probably ongoing drug treatment after that.

Cottage dreams. Cottage dreams. Cottage dreams.

Does anyone know of a cottage we could borrow before 2012???

Happy New Year

2010-12-31T14:54:00.000-05:00

What a lovely day out there. Last one of this God-forsaken year. New blue-sky blog look to herald the new fresh year which will be better for all of us.

Time for a wigged-up walk to the shops, for veg, fruit and things for chocolate fondue. A stop at the florist for a fluffy bunch of pink and celadon flowers [nary a christmas red spot in my bouquet]. And on the way back - a trip to Cobb's Bakery -olive bread, cinnamon rolls for tomorrow, and this fruity bread I know will be fantastic with melty brie whenever the craving hits.

Warm enough to wear my red coat, cheery weather, in fact. A jaunty cap on top of that wig.

A good night's sleep is like manna from heaven. I feel like a completely different person. How is that possible? Actually, who cares? I am giddy with feeling good. It feels great to feel good.

So this "new" person made herself a simple but delightful sandwich, the best kind - revelling in its saltiness, and dreaming of Mediterranean warm breezes. Olive bread, a smattering of oil, sliced sweet golden boy tomato, and paper thin salty prosciutto. About 4 bites. Life is good.

Happy New Year.

xo KO

A Thousand Small Kindnesses

2010-12-31T10:09:00.003-05:00

A small frame of time provided to sit and wait. A sketch pad would be helpful, but a berry will do to make notes. Today I left the safe bug-free womb like existence of home and am back out into the world - right into the doctors office where the only "art" is the female reproductive system in technicolour. Define "ironic".

However a doctors office does not exactly constitute a proper reentry into Sontag's kingdom of the well since everyone here is sick. I did get to short cut around the waiting room - the benefits of being a "frequent flyer." A small kindness.

What I noticed on the way - as I was driven to doctors by my hilariously funny friend Erin - another small kindness - lots of flashing lights and bad drivers and shiny faces. It is LOUD out there. It feels like I am stepping onto the set of Bladerunner, in comparison to my warm cocoon. These reminders of life which I generally don't see too much of between my normal ports of call - school yard, couch, princess margaret hospital- are sort of revelatory to me. I see it all freshly, and perhaps more warily (everything is germy). Flashes of "Sale" signs and glossy magazine-esque stores and people. Was everyone so glamorous-looking before? Has everyone always walked so fast? Did I try to keep up with that? Exhausting thinking about it, but prescient flashes of the life I will resume in short order. Somewhat frightening. Like re-entry into the atmosphere in a pod - will I burn up?

So doctor walks in and after pleasantries says - so what are you here for? Without missing a beat, Michael says " my wife has lost her hair."

She has the grace to ha ha - and after a brief exam- no fever, sore throat, hacking cough - diagnosis: I have a cold. No infections. This is great news. But the better news was the remedy, and why I love this doctor:

"Well if you're not vegetarian it's chicken soup." And once we had established I am allergic to most prescribed narcotics to assist sleep - she said " how do you feel about alcohol? Have some before bed."
You can't get better medical advice than that. She doubles my ativan dose and pooh poohs the snippy comments of the pharmacist - another small kindess. I need to sleep.

And I followed it. And I slept like a baby.

Kids return tonight for games night, chocolate fondue and [if we change the clocks ;0)] ringing in the new year.

Happy New Year, and I mean capital -H- happy. I wish a thousand small kindnesses bestowed on each of you in 2011, my lovely family and friends, as you bestowed them on me every day this past year. I am ever aware of the benevolent forces which pull / push me -and keep me in step with the world turning around me.

with love,

xo KO

Thank you Lucy

2010-12-30T00:10:00.002-05:00

It is late, and I am sick. I am sick, actually, of being sick. Ok, I have probably said this before. Begging forgiveness for my now probably spongiform brain and its lack of coherent memory. Bear with me.

I have not felt well, or even vaguely close to well in about oh, 3 weeks. That is not including of course the 15 previous weeks of life with cancer, but just this past few. [15 weeks, really?Is that it?] Now, I really feel shitty. Flat out sick to death. I feel prickly and grey and moribund; completely without vitality. I feel all sharp angles and jutting parts. I am tired of having a cold neck and a hot head. I hate the portacath, which abrades and chafes. I hate scaring children with my baldness. I hate being sick. I hate picking up a book I have wanted to read then finding out it is about a woman fighting cancer, and then throwing it. I hate that. I am sick of cancer and we are barely out the gate here.

I have had a cold, and the intermingling of those lovely symptoms (headache, aches, body-wracking cough, mucous-filled sinuses, sleepless nights) - with chemo (headache, aches, nausea, mouth sores this time, ad nausea)- make for a wicked nasty combination. Add to this, the grey miasma that is the week after YOU KNOW WHAT - in all its dismalness, well, I cannot find words to describe the flashes of darkness I have grappled with these past few days. Sometimes it feels like nothing makes those flashes go away.

Really, the glitter got to be too much for me, so I took it all down. It always does a few days afterwards. It all seems so, well, too MUCH to look at. So shiny. That is all OK when the house is full, and guests are expected, presents are under the tree, and NORAD is doing their tracking of the sleigh.

But I sensed an inaudible sigh of relief from the kids as the WHO-ville that was our house returned to the normal calm whites and beige and earth tones, pictures replaced Advent calendars, and Buddha replaced the glittery Martha-esque stick-craft I made for the mantle. [What was I thinking? As Lisa said as I made my purchases at Michael's, "Why are you buying sparkly dead things to stick in a pot?"...why indeed] I can imagine there is little room in Feng Shui philosophy for the baubles and glitter that are Christmas.

I know I have to sally forth. I know I have to bear it. I know. I know that there are worse horrors than this. But sometimes is just sucks so bad to feel so bad.

Tonight, as I was lying there, feeling like the tank was pretty close to empty, teetering on the edge of one of those dark flashes, with Michael calmly sitting with me - up from the basement comes this beautiful sonorous ripple - straight from the belly laughter. My beautiful little thing Naomi, well, she has inherited "the laugh". You know the one. She got the entire Season 2 of "I Love Lucy" from Michael for Christmas and has watched it every night. And she loves it, and I mean she LOVES it. She laughs out loud to it. I bet Lucy herself can hear that laugh. Seriously, who can watch the chocolate factory skit without a good guffaw?!

And let me tell you, it brings me back from the brink, that laugh. Thank God for it. And thank you Lucy.

xo KO

Merry Happy Birthday, Jaysus.

2010-12-22T16:58:00.001-05:00

I took this photo last March on vacation, in Beaufort, South Carolina. It was still up on some one's house. Says it all. OK, I did not know Jesus was born pre-pubescent. Love the "eyes rolled back" look too. Nice. And look, it's Dan Hill in the green outfit!!!

xo KO

Happiness is great, but it doesn't teach you much

2010-12-22T08:16:00.001-05:00

Chemo #3 has been harder than either 1 or 2, if that is possible. My body appears to be under siege by the two (ok, three) things that baffle modern medical practitioners - cancer and the common cold (and PMS). Nasty. Looking back to that first chemo where I thumbed this in below, not much is different this time but for blocked sinuses and an interior febrile feeling - that is, my head feels hot on the inside, but I have no fever (which would be serious).

"The muscles contract around my head as if to protect the neurons from onslaught. A crushing tight band runs from mid back up spine and around jaw than around temples in a vice like grip. My abdomen is distended like a malnourished child full of gas and noxious chemicals and poison"

Yes, it was like that again, in addition to a perpetually flowing head full of Shrek-pleasing green snot. Despite all this, Mike and I thought it would be good to run some simple errands after supper the other night - Shoppers, Canadian Tire and LCBO- last minute errands, and to get me out of the house and do something normal. Well about 10 minutes into normal, the walking around part of this errand run, my joints started to rebel, my body heat went through the roof and all life seemed to leave my bones. I thought - God, I could just lie down right here on the floor of CT and pass out between outdoor living and automotive. Close my eyes. Rest. Breathe.

Having a shopping cart to lean on sure comes in handy at such times.

Yet in the midst of this absolute cancerish hell, there is what we know as the festive season where we focus....on what? I currently live in a very very tightly focused world - the lens is sharp and narrow. Others are telling me that in light of my situation, they are taking stock, using my situation to rethink their own lives. Well, this is great news. I am over the moon. Use it! Work it! Re-think away. Because it is my experience that really, one learns the most from the shit that happens, not the happy times. Happiness does not lend itself to coaching moments. Don't get me wrong, it's great, but, well....

Happiness is a greedy thing - and on its quest to be the triumphant emotion in our lives, it tends to provide us as individuals with a profound sense of entitlement - society feeds this beast regularly with advertising and in all manner of social norms. We deserve to be happy. We deserve stuff that makes us happy. Happiness and desire are inextricably linked. But what is the flip side of that? What do we make of the horrific things that occur to us? We balk, we fight, we rebel. We think - I deserve better.
But what if we took the "deserve" part out of the life equation? What if we looked at the crap that happens to ourselves and our loved ones, and REALLY took stock, and lived through it, in it, with it, and walked away transformed? This seems to provide much richer opportunity, and well, possibility. I won't use the word "better", that is not fair, since it alludes to "worse", and really, this life is not all about diametric opposites. I, we, my people, have been provided with an opportunity. To grasp the deeper meanings in the everyday occurrences of this cancer, to look at the currents meandering through our lives which are more about living and being, and I can't help but feel we can and should learn much from them. We deserve this - to understand ourselves better. After all, isn't this all there is? Right now, this here.

What if we sit quietly, and enjoy the simple gifts laid out before us? Love, in all its complicated kindness; Work - for what it allows us to do and be; and pain, for what it allows us to appreciate in sharp contrast.
Even now perhaps more than ever Mike and I look at our life and marvel - it is a brilliant life we have here. Complicated. Frought. Rich. Painful.

So, my Christmas wish for you - go take stock; don't get the dog if you don't want one; do less, work less, read more, write poems, sleep more, walk away from the relationship that is dragging you down; go and get the life you want. It might not be the path of happiness. But don't miss the opportunity.

xo KO

Chemo #3

2010-12-17T22:50:00.000-05:00

by Michael

First Chemo #1, then Chemo #2, and today was Chemo #3, the last of the FEC treatments. Kate has three more chemo treatments (next is January 7, 2011), but they are "D" or taxotere.

This week, we'd expected Kate to go to the hospital two days ago (Dec 15) for blood test and to meet the doctor in the clinic, but the doctor was out of town, so Kate had to do it all today. Blood test at 7:30, doctor at 9:00, chemo clinic at 10:00.

Once again (as per pre Chemo #2), Kate's bloodwork wasn't taken from her Port-a-cath; because it needs to be "flushed" first with blood thinner, a procedure that can only happen, apparently, in the ambulatory care area, which opens at 8:00 a.m., and Kate's appointment in the blood clinic was 7:30. So once again, the needle went into her arm. The news, however, was good. White blood cell count rebounded. All cleared to proceed with poison intake.

But first the doctor's inspection. Dr. Warr saw her today. He examined her and COULDN'T LOCATE any lumps in her arm pit. "Things are fading away," is what he said.

He also said he could "feel things in the outer breast, but it's not impressive. That's good."

He said the taxotere treatments wouldn't have the nausea side effect that the FEC treatment has, but the taxotere could be expected to have more pain and tiredness. He didn't mention this.

Kate asked about when they would do more tests. Like the next MRI. "Near the end of the treatments," was the answer. Following chemo, of course, will come surgery. The chemo is shrinking everything, to make things easier for the surgeon, and the surgery most effective.

Dr. Warr doesn't have half the bedside manner of Dr. Buckman, but he is a world-class doctor and we are glad to have him in our court.

Next came chemo daycare. Kate's brother, Andy, met us there, and soon I left them and proceeded to work.

The chemo proceeded as before. The nurse forgot to flush the port-a-cath, which led to some discomfort, but that was overcome. Kate came home mid-day and slept. My mother was around to assist with childcare. I came home. Kate was on the couch.

How was she? Better than after Chemo #1. Not as upright as after Chemo #2.

One is reminded of the seriousness of the enterprise, the efficacy of the medication. It is working, that we know. It is also awful. Kate had a powerful headache and nausea and felt overall "grey," she said. "Not black, just grey." Owen watched TV, his Friday routine. Naomi painted, had a bath, complained of being ill. Fell asleep as I read her stories. Later, Owen lay in bed beside Kate, but she wasn't getting up to help him through his routine. Eventually, he allowed me to hold him and ease him into PJs, teeth-brushing, stories, sleep. This is a breakthrough of sorts, and it is possible that the cancer has helped to enable it. And it is good, but it comes at a high price.

Bottom line? More good news today. The chemo is doing what it is supposed to do. The first cycle of chemo is now done. The second cycle begins January 7, 2011. There is more after that. But we're not thinking that far ahead.

It is 7 days to Christmas. The tree is up. We are so very, very ready.

Virginia speaks to me

2010-12-15T09:35:00.001-05:00

I worship Virginia Woolf. She has spoken to me at so many different junctures of my life - provided me with solace, and food for fervent thought. My friend Gabrielle found this for me:

"Considering how common illness is, how tremendous the spiritual change that it brings, how astonishing, when the lights of health go down, the undiscovered countries that are then disclosed, what wastes and desert of the soul a slight attack of influenza brings to view, what precipices and lawns sprinkled with bright flowers a rise of temperature reveals, what ancient and obdurate oaks are uprooted in us by the act of sickness, how we go down into the pit of death and feel the waters of annihilation close above our heads and wake thinking to find ourselves in the presence of the angels and the harpers when we have a tooth out and come to the surface in the dentists' arm-chair and confuse his "Rinse the mouth - rinse the mouth" with the greeting of the Deity stooping from the floor of Heaven to welcome us - when we think of this, as we are so frequently forced to think of it, it becomes strange indeed that illness has not taken its place with love and battle and jealousy among the prime themes of literature."

Indeed. The spiritual change part is perhaps why it is not in included in the literary canon. The spirit seemingly has been left to clutches of the religious canon, with its heavy dogma and big sticks, and generally, it seems to me humans are assigned to Heaven or Hell depending on their acts or repentance for such acts. Even the saints really have to take one for the team to reach the Nirvana-like state of acceptance into Heaven - martyrdom. It is only touched upon, delicately, obtusely even, in literature. Also perhaps because it is not typically one of the triumvirate sources - man vs man, man vs nature, or man vs himself (sic).

The ancients believed that cancers was in fact one of the humers - the black humer that oozed throughout he body and ate things up, but clearly dared not admit this was man vs. himself. Man, and I mean MAN, believed himself to be created in God's form, and thus perfect but for those outside influences, or invading humers - they took over the body like an incubus. I am stepping way outside my realm of knowledge here. But what we know of cancer now is that it does come from within, triggered sometimes by carcinogens, but it is in there. It is the mutation of our own selves - normal cells- run amok. That is all. It is man vs himself, and proving difficult to overcome.

M favourite part of the Woolf quote is this - when the lights of health go down, the undiscovered countries that are then disclosed. This is where the journey really begins, into ourselves, to find out what it is that makes us who we are, and how we will bow to prevailing winds or prevail over them in the face of the black humer. What undiscovered countries will I find?

KO

Pink cheeks and soft hats

2010-12-14T16:01:00.000-05:00

I ventured out into public today, bundled up, with the winter works, full down coat, etc. Had lovely pink cheeks by the end of my adventure, from the cold. Felt energized from it all. I needed to get something done.

I was off to get stocking stuffers, hit the LCBO, and drop off a parcel at the UPS Store. Lovely soft fat flakes falling, the merest of winds blowing them around. Very pretty. Then, chitty chat in the school yard. Owen has a buddy over to play video games, and then Christmas concert tonight at the school.

Doors and windows are opening and closing all over the place today - as we welcome baby Cade, 8 lb-er, to our crazy wonderful world and bid a fond and sad farewell to our lovely "Auntie" Ronnie, gone quickly. Life is a carousel of stuff, whipping by. Colours, noise, and then rest.

Thought I could walk both ways - but fatigue, and my zealousness, well, they got the better of me. Resting now, in a lovely surprise hat that came by post -from a wee elf in UK - cashmere is a delight next to rough itchy head.

I am thankful today for this normal. Embrace your normal, and get some fresh air!

xo KO

Grey

2010-12-13T14:19:00.000-05:00

Remember those Sunday afternoons when you were a teenager, when there was what seemed an enormous expanse of time with nothing really to do, except wait for Sunday supper, then go to bed? Sort of like a grey zone between Saturday, with its activities, and Monday with its school. But maybe some knowledge lurking of a hideous test, or a confrontation in the offing with one of the "popular" set. I was plagued by those. Or like the day after Christmas - somewhat of a blank zone.

This time week three, almost chemo time - is the grey/blank zone for me - the between time. Feeling ok. But waiting for the next hammer to drop. Not quite Christmas. Some snow, not a lot. Not feeling awful, but not quite recalibrated to normal. I mean the "before" normal. Not the cancer normal. [I sometimes marvel at what I did before. I managed a life that was full of stuff - people - things - dates - notations - engagements. Managing external stuff in a fine balance.] Right now I seem to manage myself much more in reaction to internal, rather than external stimuli. The balance works from the inside out. What is my body indicating needs attention today? What ache, hum or ping needs attention? Like a car's check oil or check engine signal.

I feel grey. I feel there is a pale grey tinge to my skin, an my hair sees to be returning, steely. yes it is returning. Lacklustre though. The wig seems so shiny and bright. Fake. But better than a cold head. More real for the kids to see mummy with hair.

And yet, I feel there is something missing. A hole, hard to define, but where my life used to be.

I found a small clump of hair on the bathroom floor the other day- clearly missed, tucked under a rug, in the sweep post shave. I did not recognize it as my own. I thought, I wonder where that came from. When it dawned on me, it was mine, I thought, well the new normal has holes - no hair, for example, and definitely, holes in my memory, my ability to recall words, names, sentences. I hope it comes back.

xo KO