Tuesday, August 19, 2008

In Memorium

Patricia Anne Haidenger Clifford died at Calgary, Alberta on August 12, 2008. She was a survivor of ovarian cancer for over 6 years, and received over 80 chemotherapy treatments. She published a book of poetry on life with cancer, Embracing Brings You Back. She spoke to doctors and medical students on the experience of being a cancer patient.

Although a fierce patient advocate for ovarian cancer, Pat did not wish final memories of her to be that of an ovarian cancer patient. It is her past as an educator, writer, and good friend that was of most importance to her. Here is her obituary:

"Pat Clifford died at Calgary, Alberta on August 12, 2008. She lived her life well, as a teacher, educator and writer. She filled her life with family, friends and colleagues, and in turn filled their hearts. She leaves a gift to us in her teaching, scholarly writing, poetry and stories. As a teacher, Pat was steadfast in her belief that each child had the right to succeed brilliantly, and brought to them her own love of literature, writing and history. As a daughter, she supported her mother with laughter, empathy, and a kind listening ear at all times. As a sister and aunt, she was certain in her love. As a friend, she was loyal, up for great conversation, and a good time. In her flamingo shirt and red shoes, she entered a room with presence, wit, and a good story to tell. She still fills that room with her energy, even though her body can no longer support the life she lived."

A memorial service was held at the University of Calgary, Rozsa Centre on Friday, August 15, 2008. It can be heard at this site .

At Pat's request, donations should be made to the Patricia Clifford Scholarship Endowment Fund at the Banff Centre, Banff, Alberta.

Wednesday, August 13, 2008

Coming Undone

Part of the world as I know it has come undone. Pat died on Tuesday, August 12, 2008. It was unexpected; until the last few hours before her death, she had been busy with writing, entertaining friends, and telling a good story to all who cared to listen. That she did it from a hospital bed was of no matter to her.

She did not wish to die. A few weeks prior she had whispered to me in a small moment of fear, "I don't want to die. I love my life too much". She had been counseled to learn to let go; to accept that she was dying. This was never an issue for my sister; she knew that she was dying and had made all the suitable preparations. She was, quite simply, raging against the untimely nature of these events when she had much left to do. She saw no point to acceptance; it was a weak alternative to demanding her right to live.

In the last few days I spent with Pat, I came to realize how much of her now-presence was devoted to the telling of a good story. A small event during the day would be shaped, enlarged, and changed to make a marvelous story for all who would listen. In doing so, she followed in the footsteps of our mother and our Scottish aunts, all of whom loved nothing more than to tell a good story, always to be in the long version and never the short.

For everyone who knew Pat, I would invite you to tell your own story about her, the more outrageous the better. There are few things Pat loved more than a tale well told.

Sunday, August 10, 2008

Catch a Falling Star

Catch a falling star and put it in your pocket

Never let it fade away

The palliative care unit at the Foothills Hospital is not what you might expect. It is as much about living as it is about dying.

Few of us consider how best to live the rest of our lives. But this question is part of the fabric of Unit 47. It intensely, personally, and completely about the wishes of the patient.

It was Alison, one of the palliative docs, who brought this question sharply into focus for Pat. We were discussing what was most important to her for the remainder of her life. Pat's response was quality of life. “And what is quality of life to you, Pat?” “Well, I have a lot of writing I want to finish. I have this article I'm working on for Harvard Review, and I have some other pieces I'm working on.”

If you have ever worn glasses, you will remember that moment, as a child, you carefully put on your first pair of spectacles and the blurry world became focused. So this is what the world looks like! So too with Pat's answer. We understood the yardstick against which decisions could be measured. Will this make writing easier, or harder? Will this take energy, or conserve energy?

It has become the focus for all of us now. Four hours in the morning have been set aside for writing. And with the ferocious intensity that is both Pat and part of all good writers, it has become her space, her time, when there is nothing but life. The Harvard article has been submitted. And tales yet to be told are taking shape.

To catch a falling star is to capture a dream. And Unit 47 was the first to spread the net across the galaxy of Pat's dreams. A star is now safely tucked into Pat's pocket and with each written word, will never fade away.

Tuesday, August 5, 2008


Pat has acquired a faithful retainer who follows her everywhere, ever vigilant, never sleeping. His name is Baxter. Baxter is the machine that meters out her TPN (Total Parenteral Nutrition). Pat calmly announces his name to me. I am mildly concerned that Pat has taken to humanizing a machine. “Why Baxter? “ “Well, because that’s what written on the machine.” Sure enough, in bold letters in the top left-hand corner, Baxter announces his name to all who can read.

Baxter the Butler is how I think of him. Dinner, m’dam? Highly nutritious, if slightly on the bland side. “I would kill for a cappuccino”, mutters Pat. One of Pat’s docs is within earshot. “Well, you can probably have one if you want. It just gets sucked back up the gastric tube.” And just like magic, doctor’s orders are written for cappuccinos.

Petra, who cherishes her own cappuccinos, has been mourning their loss for Pat. We feel that she should do the honour – and the next morning, Petra appears with two in hand. Cautiously, Pat sips on the cappuccino (double sugar). She savors the taste on her tongue, like a fine wine, and then swallows. A quarter cup later, no disasters have occurred. And with morbid curiosity, we watch the gastric tube for evidence of exhumed cappuccino.

Pat is ecstatic. The taste of food, the act of swallowing. The doc suggests she try a popsicle next. Sharon fetches a popsicle from the hospital fridge (Baxter refusing to leave Pat’s side, even for a moment). A grape popsicle. Pat cautiously sucks on the popsicle, carefully navigating its tip around her gastric tube. She gives a huge grin, and we realize that the popsicle has turned her teeth and tongue purple. So we agree that perhaps not grape the next time.

We learn the rules – if the food is liquid enough to pass through the gastric tube (which is about the circumference of a large straw), then it can go into Pat’s mouth and down the throat. Gravy from stew is next on the menu. Broth is requested. The possibilities begin to unfold.

Pat tells me that doctor’s orders have been written allowing her two glasses of wine a day. I think we will have someone other than Baxter make the wine choice.....

Monday, August 4, 2008


Each of us knows a different part of Pat; very few know the sum total. Certainly I don't. But I can share parts of her past that are known to a very few.

Pat and I were born seven years apart. Pat was the blessing; I was the surprise. Our mother had had a partial hysterectomy, with no expectation of further children. Raised at a time when children meant poverty, she was likely happy with one. But there we were. Patsy and Pamela.

When Pat was 14, I was seven. I was the skinny, asthmatic kid with allergies and a drippy nose, who hung around my older sister, irritating her with my mere presence. “Mum, can’t you make her stop sniffling?” But I was busy trying to figure out what it meant to be a real teenager. I was infatuated with her red pumps and crinoline skirts. I would put on her hoop crinoline, left for washing in the basement, and twirl on tiptoes on an imaginary dance floor. I read her pamphlet “On Becoming a Woman”, try to discern the mysteries of Kotex pads and menstrual cycles, and how to speak to boys (or, as the pamphlet suggested, how to listen carefully).

When Pat was 17, I was ten. She had a boyfriend, a dashing young man who knew how to ballroom dance. And Pat loved to dance with him, gliding across the floor in waltzes and two steps. She was an accomplished actress, part of a bright, shining group that captivated my world with Shakespeare and Moliere. I would sit entranced, listening to her careful elocution and measured tones, even then bringing language to life.

When Pat was 20, I was 13. Now in university, she was working for the summer in the North Battleford Psychiatric Centre as a ward aid. A mental institution, as it was known then. A place of dark secrets. She learned to smoke and swear, and in turn taught others how to use tampons (Rule #1 -- remove the cardboard applicator after insertion!). I was busy trying to figure out nylon stockings and garter belts.

When Pat was 22, I was 15. In fourth year university, Honors English, she was an intellect. Surrounded by dark young men debating Camus, she drank beers with her professors at the Park Town, typing papers late into the night, due the next day.

And then Pat was gone, a married woman living in Ontario.

Over time, seven years has shrunk from a canyon into a crack in the sidewalk, easily stepped over in shiny red pumps and sensible walking shoes. We had planned to grow old together, sitting on a front porch, clutching plastic purses and calling out to the young men walking by. Living in a house by the sea filled with art, music, ideas, and friends. For now, we will turn back time and grow young together.

Saturday, August 2, 2008

And now from the sister...

Today you get to hear from me, the sister, masquerading as Pat. Not that it is much of a masquerade. I am a lawyer, and words are the stuff of contracts and other legal documents. I love the orderly flow of words, the precise communication of complicated concept and thought. But today I enter Pat’s world, to tell you more of her story from a space of love.

Pat is currently under hospital care for a bowel obstruction. Having very little understanding of bowel obstructions, I asked her doctor for an explanation. Our organs are surrounded by the peritoneum, a smooth, slippery surface. With ovarian cancer, tumors seed on the peritoneum, like sand thrown against its surface. The bowels have motility, and slide over the peritoneum. With the presence of tumors, the bowel gets “stuck” on some of these tumors. These tumors can press upon the wall of the bowel, causing it to collapse, or can cause the bowel to twist or loop on itself, narrowing or even closing the opening in the bowel. Our bowels sustain us by processing our food and delivering to the body what it needs; when the bowels are obstructed, the body is without sustenance.

Obstructions can, in the words of the doctor, wax and wane. They can resolve with rest and medication; they can remain stubbornly and obstinately in place. And while such obstructions are present, nutrition and hydration presents its difficulties. Pat is currently receiving TPN, which is a totally balanced nutritional supplement delivered intravenously, and beginning to regain her strength.

This has been an intense week of reflection for the two of us. Many decisions have been made, both medical and metaphysical. And now is the time for defining absolute priorities.
For Pat, an absolute priority is her writing. She has much left to say, and it is writing that sustains her as much as the TPN that feeds into her veins.

For all who are close to Pat, we would ask that you focus on all that is required to allow her write with passion, beauty, and from a place of strength. For that reason, I have offered to take over her blog, so as to free her for the writing that is now of greatest importance to her. For that reason, we would ask that if you write to Pat by email, you are not disappointed if you do not receive an answer. She holds all of you in her heart.

We would also invite you to participate together in this experience by posting comments, rather than sending email. As we all care for Pat, the journey is worth taking together.

Friday, August 1, 2008

Contemplating Beijing

I’m still in hospital doing the food tray typing. Today the network is down, but I am determined to get a message out, so I’m going through the back door as it were—composing the old fashioned way in Word then moving it over to the blog, hopefully without incident.

I am feeling way stronger than a few days ago. They have me back on that artificial feeding routine from my previous hospitalization. The dietician says I am getting a perfectly balanced diet. That’d be a first in my life. This time they had to resort to drip and suck, so I have a tube down my nose to drain excess gastric fluid. One of life’s lesser joys, I would say. For several days I wasn’t able to take in anything by mouth, but yesterday, oh joy of joys, the doc suggested I could try a latte if I wanted—more for the taste than anything, since it ends up being sucked up into the tube. What an amazing treat. Good coffee, my mouth smiled—and I will never take a sip of coffee for granted again!

Alas, there has been no talk of barbequed salmon or steak. Too bad.

So things have gone significantly sideways in terms of this obstruction. I was admitted to the palliative ward of the Tom Baker Cancer Center, in part because my palliative doc was doing a home visit assessing what was happening, when I threw up all over her. She said she had been wondering whether another obstruction was developing—and she got her answer in a big way. As a rule, I would say no projectile vomiting over your doctor, but it sure put things into motion! She actually had to continue her day wearing a pair of my trousers, while I got whisked directly in, do not pass Go.

I have a very lovely big room with floor to ceiling windows, Totally unlike being on the surgical ward. I am also getting a sense of what it means to be a palliative patient, and have palliative docs. I like them very much. In this I have always been lucky, because I adore my oncologist as well, so I feel like I am being well held, and becoming well known to a new set of people who care for me equally well, but somewhat differently.

And here’s a surprising thing. Many of you know that I have had a meditation practice of sorts for many years. I have certainly been working on my spiritual journey, and on pain control. One of the palliative docs is amazed at how little pain I actually experience. She says the only other people she sees with this degree of comfort in what should be a pretty hard situation are elite athletes!

Now if you had to place me with fellow travelers, would it be with athletes? I’m thinking we might be in trouble in Beijing.

Saturday, July 26, 2008

Barclay Had a Better Adventure

Well, for all the ongoing efforts to manage my bowel distress, I have ended up in hospital with another partial obstruction.  It was quite dramatic.  Tuesday I greeted the morning with a big throw-up, so my palliative doctor came over to see what was going on--and I did it again, only this time all over her.

I do not think it was the most diplomatic route I could have chosen to get someone's attention, and I sincerely hope she remains on speaking terms, especially because she needed to finish her day wearing a pair of my lime green cargo pants.

In the past week I was back to not eating much, but they have started the artificial feeding again, and I think I am back on the planet.  Sharon and Pam are visiting this afternoon, and I popped up in bed announcing that I needed to post something. Clearly, things are looking up!

Sherri has just stopped in to say hi.  I will close off this miserable attempt to type on a food tray.  Doesn't improve the typing any more than the  food.

Just wanted the loop open

Saturday, July 19, 2008

Saturday catch-up

I've got an email inbox full of messages I will get to as quickly as I can--but I thought this might be a way to let as many of you know as possible how the week turned out.  The problems I had early in the week with not eating, being full of gas again, and all those other delights meant many visits from nurses and one from the palliative care doctor to see if we could get a handle of one of the possible options from the usual menu.  If you expected to hear from me and didn't, it was likely that I was talking to, being measured by, answering questions from someone medical. 

Then things started to turn around on Thursday, so while I am no further ahead in figuring anything out, at least I feel a lot better.  I am always happy to receive the gifts of my body's efforts to make things work more normally.

Slowly, I am getting used to this new world of being a palliative patient.  Any of you who know my poetry know that much of it deals with falling down that Alice in Wonderland rabbit hole, where you start out being yourself and end up in the strange, upside-down-world of patienthood, where you become in some sense a stranger to yourself and have to learn a whole new set of roles and get good at reading subtle signals and entrails.

So I thought I kind of had the patient thing nailed, and there weren't any more of those sorts of surprises.  Maybe it has less to do with being a palliative patient than having more than one team working with you at the same time.  That will take more time to figure out.  Anyhow, my oncologist is dealing with chemo and its effects on the bowel, and the palliative folk are dealing with shots in the bum and their effect on the bowel.  At the moment, it feels like two completely different teams, two different sets of questions--but only one poor bowel, which would actually like the two teams to talk to each other a little more.

In a way, it's been a little like watching a tennis match, made somewhat challenging because my oncologist is on holiday, so I'm only seeing one side of the play.  I get to see him on Wednesday to get a clear clinical picture of whether/the extent to which the chemo is working.  I'll also get his take on the belly distention and how he thinks the bowel working.  Since he's done two surgeries down there and been up to his elbows, I reckon nobody know the territory better. Then I can put that together with the palliative picture of the bum shots and symptom management and see if I understand the big picture a bit better.

I think what has surprised me is that I had to lead the charge on bringing the two parts together.   I can never function very well when I don't have the big picture, and I've never liked the part of being a patient that puts the big picture only in the hands of the pros.  I need to hear my own voice, recognize myself and make decisions.  Even if I'm wearing a stupid blue gown and no shoes.

I've worked with my oncology team for so long that we know how this goes.  When I was in hospital, one of the residents told me that on the first set of rounds where my doc presented me (what an odd term--but I watch too much tv), he said that I probably know as much about my disease as anyone on the floor, and she was to listen up when I asked questions or told her anything.

I liked that. The palliative team doesn't know me yet, so part of my job is to get that going.  I put an oar in the water on Friday when the nurse asked, full of concern, if I had any unfinished business left. Other than farting, I assumed. I knew full well what she meant, but chose to misunderstand.

"Hell, yes.  I'm not ready to cash out yet.  I've got a swat of writing that seems to be growing by the week, and I'm damned if I'm giving up on it.  So let's get this show on the road."

It wasn't much, but it was a start.

Then I had the big treat of my sister, Pam,  coming in from Saskatoon again.  We are at Sharon's hanging out and keeping close for the weekend.  

Wednesday, July 16, 2008

Wednesday Moan

A little update to let you know that impatience seems to have no effect whatsoever on the rate at which I start to feel better.  I am pleased that the reduced dose of meds is having the desired effect--but clearly there is an expectation in my heart that now I should be back to normal and doing whatever the hell I want.  

Ain't happening.  I am tired and weak--and an adventurous trip to the supermarket is out of the question.  I know there is a zen-like way I could be surrendering to this desire to rest (ie I could lie down and sleep without making a song and dance about it), but I find myself resisting and whining and struggling.  It's a good thing it's not winter, or I would have tried to put on pantyhose today just to prove I could still do it.  If I wanted.

This has got me thinking about rhythms when you are ill.  There's the dailiness of which meds when; of whether this is a nurse or  a not-nurse day; of whether the heartburn is typical week 3 post-chemo irritation.  It looks like my expensive shot in the ass knocks me out in predictable ways for about a week, and chemo knocks me out for a different week.

Thank God I'm only on 2 big things a month.  

 Getting used to these changes and learning to understand what they do--and do not--mean is a whole new thing.  I understand fully why the ancient soothsayers pawed through the entrails of chickens.  What does this new thing signify?  Do I need to pay attention to that belch or twinge?  Does it matter that if I'm going to have pain, it's more likely to start in the late afternoon?  

It's a fine line between attention and neurosis.  Maybe I'll just lie down on top of it for a while instead of trying to walk it!

I may get behind on phone calls and emails for a few days till I can get both eyes to consistently stay open at the same time.  Don't worry, though.  I haven't gone far!

Sunday, July 13, 2008

Barclay's Excellent Adventure

So we were at Sharon's to help my sister avoid the cats at my place.  But there was a hitch: Sharon and Ron actually have a cat, Barclay.  Now, he spends most of his time outside in the garden, sleeping under the honeysuckle.  And he always goes out at night--so what with one thing and another, we thought we could manage.

Mostly, Barclay is Ron's cat--and like two retired old men, they have worked out their routines together.  Ron's lap is the sitting lap.  Ron's beard is what you cuddle up to.  And Ron will come downstairs to the food bowl and watch you eat if he isn't busy sawing things to pieces.  Barclay knows Sharon is a hopeless  substitute, so he doesn't even give her a try.

I told my nephew, Adam, about the food routine.  "Oh, I can do that, " said.  And turning toward the cat, he called, "Come on, Barclay, let's go."

Ten minutes later, they emerged from the basement looking quite pleased with themselves, and Barclay had a new friend.  

Next day when Ken and Judith arrived, Barclay knew he had hit paydirt.  "Follow the ass," he seemed to say as he picked out one likely sucker, then another.  And with his wonderful tail curling over his back and waving like a Flames flag behind him, he managed to cajole Judith to eat with him.  Pam would follow him to the front door to let him out and in, out and in.  And once (or at least, she says only once) she followed him to the living room where he jumped up on the couch and waited for her to join him even though she seemed unable to get all her paws on the cushion at once.

It was a most excellent day for the feline.  But the best was still to come.  Let outside when we all went to bed, Barclay called through the family room door to Adam around midnight.  He of the Smitten Variety got out of bed, padded over to the door and opened it.  And in sauntered Barclay with a very small, very dead mouse hanging out of his face.

"Barclay, take that outside," pleaded Adam, not entirely sure how to get the cat to follow him rather than the other way round.

"No way," said the cat--or words to that effect.  He had done a manly thing, bagging a kill for the family.  It was better than rent. Why would he take the damned thing outside again?

And so Adam, crawling back into bed and I imagine jamming a pillow over his head to muffle the sound, got to hear Barclay chomp down on the poor mouse from top to bottom, crunching all the bones as he went.  

And when Adam sneaked back out to assess the damage, he said that all that was left was one tiny red undigested berry from the very small intestine of the very small rodent.

It was, I am sure, the best day Barclay had had in a very long while.

Score Card: Pat 3, Rats1

Got my long-awaited Octreotide shot on Thursday, and the reduced dosage seems to be having the effect the doctors want: almost no diarreha, and bowels that are waking up again.  I'm relieved that their theory that my misery was drug-induced looks to be correct.  But more than that, I am fascinated at how my body is responding.  For more than 6 weeks, my bowels weren't working in the ways they had for 60 years--and of course, there was always the possibility that they had just packed it in.  But when we removed at least one of the obstacles, they began to remember what they have wanted to do all along.

I know that some people feel betrayed by their bodies when cancer strikes.  I have had almost the opposite reaction: the impulse my cells and tissues have to health is actually remarkable.  No matter what the toxins I take in through chemo, my body wants to use them to get rid of the tumors.  And even when the medication forced my bowels into some kind of weird dormancy, they knew right away what to start doing the moment it became possible.

Isn't that remarkable?  

So score one for me and my gut.  I hear/think/read lots about how important it is to pay attention to the subtle signals your body gives so you don't have to deal with huge symptoms later.  I am even learning how to do that.  So for the past 3 days, I have become re-acquainted with what it feels like when stool is forming.  You can tell where things are, and you can feel it making its way along.  It feels way different from being full of water.

And I suspect that's way too much information--but I'm back in that kid-like poop space for the moment.  This too, as they say, shall pass.

Score two: I got out of the house for a few days.  My sister and her family drove in from Saskatoon.  We stayed at Sharon's (she's on the coast, working like a navvie) because Pam is allergic to cats.  So it was like being in a lovely hotel for all of us.  Sharon has an amazing garden.  Then we were joined by friends from Texas on Thursday.  Turned into a party, and I loved being enfolded in the laughter, take-out Chinese and the little taste of superb Scotch that made it onto the See Food diet.  We watched Rare Birds and roared with laughter, and talked and...well, just did what you do at a kitchen party.

Rats won a round with the side effects of the steroids.  It feels like overnight, I blew up like a puffer fish.  Unfortunately, I saw it the morning I went for a haircut.  I was sitting in the chair ready to get a fashionably spiky cut and I was appalled at the cheeks that stared back from the mirror.  Where had my mouth gone?  My eyes?  Why was I all gopher and no girl?

"Well at least your skin is really smooth?" the sweet young thing who was cutting my hair offered tentatively.

"Jesus, I look like Mr. Potato Head.  How can this happen when you aren't even looking?"

Plus, the steroids are giving me spaghetti legs, front and back.  My thigh muscles have so little strength that I actually think I qualify for a handicap sticker.  And I'm just not willing to be debilitated again by medication.  Cancer is bad enough.  Putting up with this nonsense ain't in the plan.

I consult with a doc early in the week--but it feels like this is one of those times I need to be an im-patient.

Monday, July 7, 2008


I had another Healing Touch session today.  My friend Cindi has been doing this with me for a long time, and it just gets better and better.  All my bones seem to have melted this evening, and I'm getting ready for a very early bed.  It rained hard this afternoon, and the evening air smells delicious.

Two pieces of good news that don't have a thing to do with guts or anything medical.  One is that I have had an article accepted by the Harvard Educational Review.  We start doing the editorial work immediately, with a publication date about 4 months from now.  It's a piece I co-wrote with Sue Marinucci.  We both feel quite smart!

And I just got word that I have been accepted for a week's writing retreat at the Banff Centre in September.  Did a happy dance on that one, too.

I've been making a list of things I want to write.  It feels good to have one of them almost done, and another pointing the way to Banff.  When I get fingerbones back, maybe I'll share some of what's on the list.  

Or does that jinx it? I started the list when I just thought it was a good way of getting my mind organized.  I didn't realize that Lists are another one of those Oprah/Secret/Louise Hay things that have popped into being as some kind of other life form I know nothing about.  Anybody else make lists, and how come, if you do???

Saturday, July 5, 2008

Circle of Friends

The weeks that I have been dealing with this incessant bowel business have been trying.  Since the end of March, when The Troubles began, I've lost 30 pounds, and some days it's all I can do to shower and get back into bed.

Being this weak, and knowing it would only get progressively more so till we got the medication issue straightened around, I was thrown on the horns of a practical dilemma--but also had to face one of my deepest fears head on.  I live alone.  I have no Perfect Husband to wait on my every need, no Utterly Uncomplaining Children to make sure that I always have what I want, even before I know I want it.  You know the kind of thing you make movies out of in your head when the mere details of reality are no obstacle.  My friends with real husbands and children tell me I must be on more drugs than I realize when I start talking like this!

I have always been afraid of how I would manage when, well, I couldn't manage.  And now I know.

When my friends and I realized how vulnerable I was by myself, we (mostly meaning they) mobilized into action.  I have always been fiercely independent, mostly successfully, and while I had gratefully accepted help all these years to get to and from chemo, or to cope post-surgically, I had never been in a position where I actually couldn't trust my own judgement about how well--or not--I actually was.

Not eating for days will do that to you.

So here's what we did.  A group of friends called a meeting to set up a roster so that every day for at least 4 hours, someone would be with me to do chores, make sure I ate, take care of anything that needed taking care of.  The cats, by the way, send their total gratitude for this!

They posted a Google calendar so I could see who was coming when.   I didn't have to make a decision, lift a finger, dial a number.  Hell, I didn't even have to be awake.

They are caring for me in the most loving and careful ways, and my deep fears have simply melted away.  There could not be a better gift in all the world to give a friend who doesn't always even have the energy to say what she needs.

But here's another thing we are finding out.  All of us (including me, before this latest drama) are very busy in the world.  Most people work, but even retired people like me get booked up with lunches and shows and shopping and god knows what all.  These past three weeks, I feel like I have found my friends all over again.  The most precious thing we have been sharing is just our hang-out time.  Yes, the practical help is essential--but nobody is rushing in like the White Rabbit in a hurry to somewhere else.

Just sitting or lying around sharing what we most love about one another--that is amazing.  Every person is precious to me in unique ways, and like Slow Cooking, I am basking in that uniqueness again, remembering all over why we like one another so much.

It's not like having visitors--in fact, we all agreed not to do that.  I don't have to rise to anything, although I've always been good at it.  And they bring their own selves ready to have tea and stay a spell.

And the best thing is that as people are able, the circle gets bigger and more complex.  It's like we are all growing very long arms, caring for one another.  

Chew on This

Got through last weeks' chemo, with each day being progressively more difficult than the one before.  That's part of the rhythm of treatment: you fill yourself with toxins, deliberately and systematically, and then wait for the hammer to fall.  

I am constantly amazed at what we ask our bodies to endure in the name of treatment, and the ordinary, everyday stubbornness it takes to just do it--over and over again.  This time, the GI irritation that usually holds off till about week three started at once.  I had heartburn-like pain from the middle of my sternum to my crotch, if such a thing is possible.  My innards felt raw--which also meant being thrown back into the not-eating place as well as all the indignities of hamburger-for-guts.  My gums started to bleed, I got thrush.  Nothing was spared.

So I called a nurse, who came over to help.  "Okay," she said, "you could start with something like Gaviscon or Tums to coat your esophagus and stomach.  That'll help."

Gaviscon? Tums? Excuse me, but I have a Most Serious Cancer going on here.  And you're saying all I need is some kind of pizza fix-up?

Well, I didn't actually say this out loud, but I sure thought it.  I'm burning from stem to stern and I should take a Tums??? Give me a break.

But I did it anyway, no high power prescription seeming to be forthcoming.  And it worked like hot damn.  In less than five minutes, the raw burn was gone and the sharp pain in my belly had subsided.

So what else did she have up that nursy sleeve of hers?  My belly was distended--too much gas going nowhere--which was making me very uncomfortable, and also raised the spectre that maybe I was starting to bung up again.

"Gasex", she said, "or Beano.  People like Beano."  

So I should get with the dorky guy in the Silent But Deadly commercial and solve my Very Serious Intestinal Distress with a strip of drug store tape?  Surely there was something more, well, exotic or solemn I should be trying.

Turns out, nope, Gasex works just fine.  And finding that out was like discovering that my chemo nurse was right when she said the very best thing for mouth sores is rinsing with Club Soda.

I learned a couple of things from all this.  First is the actual wisdom of folk wisdom, and the power of sharing humble but effective solutions with others.  There's a lot of drama around cancer treatments, and I got caught up in thinking that serious attention to comfort needed to be solemn, or prescribed by someone in a white coat, or be somehow big enough to assure me that my pain was being taken seriously.  

I think it's great that nurses know what they know, from the most technical medical stuff to the kitchen table solutions that work just fine, thank you very much. I'm glad they pass it along even when people like me look right through the obvious holes in their head.

And I'm glad to have a body that's still enough like everyone else's that a couple of chews will do me.

Monday, June 30, 2008

Arriba, Arriba: This one's for Mary

Mary is my die-hard soccer fan.  She was a fierce competitor in her day, with the knees to show it, and amazing loyalty to her favorite international team, Real Madrid, which hasn't won a major tournament since 1964.

Mary's not even that old.

A few years ago, Sharon and I were in Madrid with instructions to bring back something from Real Madrid: a team poster, a scarf, a noisemaker. We were such soccer virgins we thought Real Madrid was a place in the city, maybe near the big outdoor market near the city centre.

''Real Madrid?" we would ask, pointing uselessly in all directions in that dorky tourist way.

And people would point around too, trying to get us to focus on the kiosks and little shops that contained exactly what we wanted.  We just couldn't see it for looking at it.

So a St. John's toast to Mary and the boys.  I hope you aren't sober for days!

Saturday, June 28, 2008

See Food Diet

When I first came home from the hospital, I really struggled with what to eat.  I had a green sheet from the dietician about non-constrictive diets, but since it covered everything from seeds in kiwi fruits to mastedons, I found it less than helpful.

And besides, I wasn't feeling in an entirely trusting mood given what they had offered up as "food" from the hospital kitchen.  I don't know how trained people can look at what's on those trays without a deep sense of shame.

So what to do, what to do?  My guts were struggling.  I was taking steroids to reduce inflammation, so I started looking for the kinds of things people with celiac eat.  If I was already producing too much mucous, maybe I should eat less gluten and dairy and more---well, more of what celiacs eat, whatever that would be.

The quest was on, and I tried really hard to balance proteins, carbs and soluble fibre.  I ate every couple of hours (pathetically) so my stomach wouldn't fill up too much, and I ventured into new territory: goat cheese, quinoa, rice crackers.  Rice for breakfast.  Discovered that sushi and Chinese sticky rice were great, and mashed potatoes not so bad at 9 in the morning. One week I ate almost nothing but.

But I was falling over with hunger.  I kept snacks on my bedside table, snacks in the fridge, snacks beside the bathtub.  I have never cried very much at any stage of this cancer journey, but I sometimes sobbed with fatigue and hunger.

Got so bad I even tried the Boost-type fake food the hospital dietician had sent home.  It had sort of awful connotations for me, because I once lived next door to a crack house, and I discovered that crack heads live on Ensure and throw the cans all down your back alley when you're not looking.  But when you get hungry enough, you'll eat like an addict.

Bad mistake.  That stuff might be chemically fortified to help, but my guts didn't want it inside and showed me in no uncertain terms what I could do with those cans.  

It was my psychologist who introduced some sanity to all this.  "Look, kiddo, you are thinking about this all wrong.  In your state, nutrition isn't the point.  You gotta get some calories into you."

"I thought that's what I was doing."

"Nope.  First thing off, get some Ben and Jerrie's full fat ice cream.  None of the diet stuff--get the richest you can find.  Ice cream will digest in the high gut, so even if you have diaerrha 20 minutes later, you'll have got some cals into you already."

"Then start thinking French.  Dollops of butter on your scrambled eggs.  Put cream in.  Gonna have a little cake?  Forget the icing--put straight whipped cream on.  Gravy.  Just push those calories till you start feeling a little stronger."

I started hallucinating a barbeque burger--with cheese.  Fat glistening on the top.  Mayo.  Potato wedges.

All of a sudden, life seemed possible again.

And I felt like a kid.  See something I liked?  I'd eat it.  It was surprisingly easy to flip the bird at a  life-time of dieting.  I needed that fat.  

Now, I have no idea about the physiological soundness of all this--but I do know that when I followed the cravings, I stopped crying.  And I didn't eat only this stuff.  I wanted meat and rice and little bits of veggies.  Had 8 avocados in one week.  

It was fun to munch on popsicles when I got tired of drinking incessant glasses of water.  I wanted to go to the grocery store and load up on wicked things and see if some skinny minnie would look down over her bifocals at my cardiac central basket.  I think I'll get some Cheerios.

And hey, I found out that the fastest way to restore electrolyte balances when you are dehydrated is chips and coke--the salt, potassium and sugar work like hot damn, and taste way better than Gatorade.

Found an article on a science blog from a 2003 issue of Gut.  Gotta love that title!  It suggests that people with colorectal cancer who eat a high fat diet after treatment actually live longer.  

Friday, June 27, 2008

Clinical Trial: Blood Test to Screen for Colorectal Cancer

Phenomenome Discoveries, a Saskatoon-based research company, has just made joint announcements with the government of Saskatchewan and the University of Calgary to begin clinical trials of a potential blood marker that would screen for colorectal cancer.  Information about these trials is on the company website.  Here's an excerpt from a newspaper report carried in the Saskatoon Star Phoenix:
    "By combining our resources, we're able to proceed with what is the world's largest and most thorough evaluation of colon cancer pathology and metabolic risk factors ever performed in the history of medicine," said Dr. Dayan Goodenowe, CEO of the Saskatoon company.

    Speaking at a Wednesday news conference, he said Phenomenome's research has indicated 90 per cent of people who have colon cancer have a metabolic deficiency. Based on six years of research that involved more than 1,000 people worldwide, the company has developed a highly validated blood test to identify who has the deficiency.
    The two-year trial will begin at the Pasqua and General hospitals [in Regina] and will involve 5,000 patients".
The Alberta trial has a different focus:
    Robert Hilsden, MD, from the University of Calgary is conducting an investigator sponsored clinical trial using Phenomenome's gTA test. This prospective cohort study will be conducted at the Forzani Charities Colon Cancer Screening Centre (CCSC) in Calgary. The study protocol has a two arm design to evaluate average and moderately high risk subjects with no known colon pathology and a smaller sub-study of CRC positive subjects.

    The primary aim of the first component of the study is to assess the diagnostic accuracy of the gTA test in detecting CRC in asymptomatic persons scheduled for a screening colonoscopy based on fecal occult blood results. The second component of the study will focus on the gTA levels of CRC positive subject's pre and post-surgery to determine effects of tumor resection. All study subjects will be followed longitudinally for three years with additional gTA tests and colonoscopies based on the initial results. The goal is to enroll 1300 subject in the first arm of the study and 150 CRC-positive subjects in the second arm of the study.

    This study is scheduled to begin in 2008.
I think it is tremendously exciting to see a very different approach to screening, and to know it's coming from our very own prairie folk.  I say, way to go to everyone involved.

Confronting the "P" Word: More of the Long Version

As I finished my 16 days in hospital, getting out turned out to be almost as hard as getting in, not the least because big decisions needed to be made about the best way to prevent another obstruction.

They had me on the 3 times a day shot of a drug called Octreotide, prescribed by my oncologist.  It worked like a charm.  The problem is that the drug is so expensive, and when it is used outside the hospital setting, it can be prescribed only by a palliative care physician.  

So all of a sudden, a whole new team of docs, nurses and social workers started showing up at my bedside.

Now, in one way I have been preparing for becoming an official palliative patient for 4 years.  As soon as my disease recurred, we knew that all treatment really ceased being curative.  the goal of all my chemo since 2004 has been to keep disease-free intervals as long as possible, and to manage what disease there is to keep it stable.  In that sense, even very active and powerful drugs can be thought of palliative.

I've given a talk to second year med students about palliative as a continuum, not a death sentence, and I have always had a clear understanding of the number of chemo cocktails remaining to me, and the order in which options would disappear.  So while my conversation with my oncologist about how quickly my disease was now progressing was hard, it wasn't like the territory was exactly new.

But that didn't make it easy.  And the first major problem came in how the professionals decided to put the whole matter to me.  In order to have access to the long-acting version of the drug I would need (worth $2,700 per shot), I had to be registered with the Blue Cross Palliative drug program.  I continue to be grateful that such a resource is available, and politically more committed than ever to a public system that takes finances off the table.

What I hated was how one of the nurses came in and played "How big is the baby" with me.

I know it is hard for nurses on surgical units to talk honestly with patients who have cancer.  It remains a big unspoken word, even though many of us patients are there because of cancer.  so she breezed in to reassure me that I could be happy about what was going on.

"Look," she said, spreading her hands out a bit.  "Your regular drug coverage is like an umbrella this big.  It's good, but not big enough.  Now you have an umbrella that's thiiiiiiiiis big.  Isn't that neat?  That's all this palliative stuff is about.  You are covered thiiiiiiis big," spreading her arms wide. And she grinned professionally, certain that she had erased all bad thoughts from my head.

Is it neat to be told you are now this ill?  No, it's not.  Is it neat to think that you can celebrate because someone just got you a Costco drug card that your own dear doctor could not access even if he wanted?  No, it isn't.  Is it neat to be treated like a child who gets the signal not to cry because mommy just kissed it better?  No, it isn't.  

All of a sudden, new players arrive on the scene.  They leave, they contradict one another, and hit in the gut, you have to try and put things together when every cell in your body is trying to absorb what has just happened.  I tried not to retreat into a little animal ball of hurt and fear.  I tried to muster short questions and short versions of what I thought I was understanding.

And I realized I couldn't get the p-word out of my mouth when I tried to tell my sister and my friends what was happening.  I talked about having a home care team, about the bureaucratic necessity of getting paperwork done "through Edmonton".  I even tried out my own not-stupid nursy version that we were just accessing the system.

What I couldn't do for a while was to say, this is a new stage for everything.  Only two people used hard words with me--my partial obstruction was labelled a malignant obstruction by a doctor friend, and we talked calmly about it.  And one other used the word "terminal" and how hard it was for him to make the transition from knowing me as being in active treatment to being in this new place.

The first palliative doc I saw said I didn't have to promise to die or anything.  But now dying was on the table, and so was the question of how to live with this.

Hedging my bets on your behalf if you are learning this for the first time, the nurses say I am not dying.  I don't feel like I'm dying.  I actually do feel like I am recovering from an overdose of expensive dope, and that we are on track to getting bowels managed well.  But I am a palliative patient, and there's no short version of that experience.  

I hope you might want to hang out in the next little while as a I explore the longer one.  

Short Versions

My ninety year old mother loves to tell stories about her day.  Mostly, I just settle in and let them unfold, but sometimes there are just things to do, places to be, shoes to be put on and coats to be buttoned up.  

So you gotta say, "Can you just give me the short version today?"
Well, she gives you this look and shoots back, "No I can't.  I don't remember how to do short versions any more."

Of course, we all grow into becoming our parents, and I know I am getting less and less good at short versions.  And that's just part of what you swore you would never do--turn into your mother.  But I'm also learning that short versions always suit the active and the well far better than they suit those of us trying to make sense of all the changes we live with.  It's like the world has become a sort of white rabbit--always I'm late, I'm late, I'm late for a very important date no time to say hello goodbye.  I'm late, I'm late, I'm late. 

Which is terribly ironic when you, yourself, are the one who knows you are running out of time.  You'd think it would be the terribly ill who would want to jam in the essential details and let the frills go. Just get to the short version.

Trouble is, it seems to me that what others call the  extras  have actually become the place where important ideas, insights, worries and fears actually hang out.  I know there are places I have to try harder to be efficient in describing symptoms, giving signals about whether I need to see a nurse today or not, letting someone know if I need something picked up at the grocery store.  But I can also see how that effort comes at the cost of other ways of living I am starting to really enjoy.

Those of you who know me personally know that I have been an academic all my life, and I love nothing more than a good theory--so I'm going to muse about some of this stuff from time to time.  My current best helper when I want to dig down and find out what that burr under my saddle actually is (sorry, but Calgary Stampede is coming up, and such metaphors have a life like c-difficile.  In 2 weeks I promise not to talk like that for another year).  Anyhow, my good thinking friend is Arthur Frank.

But for now, I have to do a mother thing and go back to the main story line I sort of abandoned. Some people have been asking for more info on what's being going on since I got home from the hospital, and how come I'm still having troubles.  Suits me to keep a bit of the plot line intact along with musings about what it all might mean. 

Brown Blogging It

PamJam's comment that the blog is brown is one of those oh my god I never noticed moments that just make me laugh!  The template is called Scribe, I'm a scribe, it's parchment.

Ya right.  I'm going in to find something a little less--evocative?  See you in a few minutes!

Thursday, June 26, 2008

Inspiring Blog

My friend Trudy Boyle has a real blog.  She is chronicling the first hundred days of her treatment for breast cancer, and her blog is a work of art.  Trudy is an amazing writer, and she includes gorgeous photos, intriguing links to things she is reading or would like to read.  I love her apologies to her hair, and her latest discovery that spending time with her granddaughter drove her white counts, usually in the post-chemo toilet, so nicely up in the normal range that her doc thought they might have got someone else's results instead!

Pop over to Joyful Wrecks and enjoy!

Maybe if I had a camera it might help??? Although given my musings of late, it actually hard to imagine how that could be a good thing.  

Every Jewel is Precious

You know how people can still say where the were when JFK was shot.  Well, I was one of those watching Oprah on a pivotal show when her new cardiologist-guru, Dr. Mehmet Oz, showed up to talk about pooop and farts.

He wheeled in a tray of intestines, one healthy (or at least as healthy as you can be when you are dead) and one diseased and ratty, and he handed Oprah a pair of purple plastic gloves, the kind chemo nurses wear, and made her touch and squeeze.  Then he proceeded to talk about what goes on in intestines, and all of a sudden, the nation was transfixed.  When we were little, most of us were fascinated by what goes in and what comes out--but we learn very early on not to actually talk about it "in polite company".  So here was this big doctor describing in vast detail what a healthy bowel movement looks like, what it should sound like hitting the water (hint, like almost nothing--the "rip" entry that Olympic divers strive for).  

And he talked about farts--what makes' em and how many the average person produces in a day--somewhere between 14 and 23.

Wonder who got to do the data collection on that one?

For years, there has been a wonderful site for kids online sharing real information about stuff that isn't polite to talk about, like boogers and gas.  And now adults are logging on to message boards to ask questions about issues they'd kept hidden for years.  According to Oprah's site, 38% report that issues around gas are a problem.

Now, there's lots of things to be said about this phenomenon, and YouTube is a great place to get some scathing commentary on the Queen of Daytime and the ways her interests all of a sudden become ours.  That could be a topic for another time all on its own.  What's got me thinking is that until I started having bowel problems, my whole gut (okay, actually my whole innards from top to bottom) was terra incognita.  I knew I had lungs and a liver and spleen and pancreas and all that--but damned if I could accurately point to where they were, much less say in any kind of precise way, how they made me work.

I was like the old Portugues sailors headed off to the ends of the earth with maps that labelled all the unknown parts "Here Be Dragons".  Did I know I had 37 feet of intestines?  Nope?  How big a rectum is?  No idea.  Just knew I wasn't much of a fan of having it examined.  Until I had my first surgery, I didn't know that when you haul out that 37 feet to feel every inch of it for tumors, it goes into a kind of catatonic withdrawal that lasts for days after.  The very most exciting thing to happen post-surgery is to pass gas.  That means that things are waking up and your guts have decided to join the world again.

After my first surgery, my mother sent me a message from her prayer group: what would be the best thing for them to ask for, this little group of snow white Presbyterians.  

"Ma, make it for a fart."
"Oh Pat, I couldn't possibly do that.  Whatever would they think?"
"Maybe that I really needed one?  But look, you can just keep it between you and God.  That'd be good, too."
I never found out whether she trusted God enough to talk about it, but I kind of doubt it.

Now, in managing the mastedons, farting has become important again.  I've discovered that all the sloshing that goes into trying to propel the food out subsides enormously when I can pass gas in that teenage sort of way.  Every morning starts with a call from my home care nurse and a report on the tank.  And I discovered that if I feel bloated and not functioning right, I can lie on my left side and that helps get gas going.  The nurses say that's anatomically sound, and it's how the place babies for the same purpose.

I just don't know why it's sound.  Must be the direction in which everything winds around?  I really mean it when I say I'm stuck with an essentially medieval understanding of the science of all this.

Which means I'm still looking for Hildgard von Bingen and her meditations on the bowel.  Anybody else but Sherri ever heard of this?   

Tuesday, June 24, 2008

Mustard Gas

Mustard Gas

from Pat Clifford (2006), Embracing Brings You Back, Coteau Books 

Returning home from France,

their throats and lungs burned out, spent soldiers share

my life: bone-cracked exhaustion, baldness, retching, mouth sores and the curse

of cramping diarrhea.


It took some smart American nerve gas scientists to put

two and two together over coffee, I imagine, brewed on Bunsen flames.

Guts and hair grow fast. As do cancer cells, so: why not? When we’re finished

with the Germans we can hit that other fucking shit, no?


My television shouts Iraq but I don’t need to travel half a world

away for the chemistry of mass destruction. My only hope

for survival squats in the sterile fluorescence of the Cancer Day 

Care unit ten kilometers from my home, waiting.

Chemo Week

I've started Round Three of chemo this week.  It's a drug called Alcoran, one of the earliest chemos used for ovarian cancer before they developed platinum and taxane based alternatives.  It's an old war horse, generally used when other options are no longer available.

I was talking to a friend in California who had a detailed analysis of her sister's tumor tissue done, and the assay (as it is called) indicated that she would have actually have been better off to have started all her treatments with this drug.  So it still has its place in the repertoire, and I can tell from how my lower abdomen is feeling that it actually is working right now.

So here's the weird thing.  The drug is a derivative of mustard gas.  Years ago, I wrote a poem about this in my collection Embracing Brings You Back.  I'll try pasting it in another post.  I find that history a bit creepy, but also intriguing.  It lets you know how blunt a hammer chemotherapy remains.  One of my fantasies is that soon we could have chemo museums where people could stand and stare all all the paraphernalia and marvel:  "Can you believe we actually had to go through that?"

The other strangeness is that I take the drug as eight little pills each night for 5 nights before I go to bed.  No needles, no experts directing the toxins into me.  And no trips to medical day care.  I didn't know that when I wrote the poem. Just me deciding when it's time, counting pills out carefully like a slightly addled pharmacist, and sending them down the hatch.

I put them in a shot glass.  

Today I get to see whether I am flattened on the couch, nauseous, and what effect this will have on my gut, since all chemo is hard on the GI tract.  Last time was easier than the first--so anything is possible.  But it's rainy and cool, so if I hit the sack, it'll be my favorite sleeping weather.

Monday, June 23, 2008

Rats 2, Pat 1

Just a quick note to update you on my day.  Having written my brains out yesterday during my spa weekend with Sharon, I got pretty quiet today.  I actually hadn't slept well Sunday night because my head was full of other stories I wanted to tell.

Writers' curse, a sort of brain cramp.

So today I stayed close to home, enjoying the company of my friend Georgia and napping as often as the cats.  One of the realities of living with stuff like this is that you really do have to take things one day at a time.  Planning becomes an exercise in creating fiction.  One good day doesn't follow another--and nor can I be certain that a bad day won't disappear with the sunrise.

Or more accurately, I try to find ways not to think of days as good or bad.  They each have their own character, and when I can meet my body where it actually is, rather than where I want it to be or try to force it to be, I can remain calmer, and sometimes even a bit curious about what today's changes bring.

I think years of meditation may actually have made a difference.  But that's always up for grabs, too!

I'm also going to try and change a setting in the part of the blog that lets people comment.  I seem to have left a default setting that is keeping everyone out.  Not good.  Now you will get to see whether I can think my way through permissions.  I was never any good at it before, so we may have to wait to be rescued by Sharon before you can comment.  But give it a try, and if it works in the next half hour, I will take all the credit

Sunday, June 22, 2008

A Mastedon Makes an Obstruction

I'm beginning to think the Italian sausage theory of my obstruction isn't so crazy after all.  In this post, I'm going to copy a description of how our guts are designed to deal with digesting big hunks of meat we come upon serendipitously, whether by stumbling on a big kill or browsing the lunch counter at Lina's.  

It might fall into the TMI category of more detail than you want about how the gut works, so feel free to ignore it, especially if you are a friend who has to listen to mine sloshing and growling these days.  But if you want to know more about why cancer interferes with normal bowel functioning, this is as good a description as anything I've found.  It's in a book by James Hallenbeck called Palliative Care Perspectives

    The intestinal tract did not evolve to compensate for mechanical bowel obstruction caused by an immobile, fixed lesion such as cancer. The physiologic changes that arise with obstruction would be adaptive to reversible forms of bowel obstruction that may have occurred for our ancient ancestors, but they are maladaptive for patients with cancer. Similarly, kidneys demonstrate a maladaptive response to heart failure. Decreased renal perfusion is sensed as dehydration. Fluid is retained to compensate when, in fact, the patient is drowning. We adjust for this by "overruling" the kidneys, telling them to get rid of salt and water and not hold on to them. The kidneys can be mistaken. What "misunderstanding" arises in bowel obstruction?

    Imagine that you have been very hungry. Your tribe finally hunts down a mastodon, and it is time for a feast. You gorge yourself, eating great chunks of meat and causing a temporary obstruction. Your body would respond in the following way.

    1.  Mechanoreceptors and chemoreceptors would be stimulated by the distention caused by the large build-up of food proximal to the blockage. These receptors would tell your brain to stop eating. 
    2.  The intestine proximal to the blockage would begin hypersecreting fluid, trying to flood the system and wash the intestinal contents downstream.
    3. Intestinal motility would increase, further trying to push contents downstream and causing cramping.
    With luck, you would live to hunt another day. While this approach works well for ingested mastodons, it works poorly for malignant bowel obstruction.

In essence, what Hallenback is describing is what made me call my doctor. I was nauseous (stop eating, Pat, and get rid of what you just put in your stomach because it ain't going anywhere). My gut was scramping. Oddly, the best description of the pain for something so serious is that it was colicky. I could hear fluid roaring and sloshing around, trying desperately to wash stuff downstream.

There just wasn't anywhere for it to go.  The blockage formed a little dam, and everything nature was telling it to do, except for not putting in more mastedon, was starting to work against me.

Flat on My Back

The day after I checked in to hospital, test results were all back:  I did have partial obstruction of the small intestine, and my chemo had stopped working.  My oncologist was shocked at the rate at which disease had seeded all over my intestines.  One measurable mass had also grown up in the lower abdomen, but he wasn't nearly as concerned about that as he was about what was happening to my gut.

I declined his offer of surgery for immediate relief of the obstruction.  If my bowel had been kinked or hooked around a mechanical obstacle like scar tissue from previous surgeries, I might have considered the option, and I guess I would have if my current situation were immediately life-threatening.  But, he said, we could try managing the blockage conservatively--which is not generally a word in his lexicon, he being a truly gentle soul with the surgical aggression of a tiger.  I wasn't surprised to learn, then, that what he meant by "conservative" wasn't quite what others did.

The usual treatment involves something elegantly called "drip and suck".  You'll have seen patients walking around hospitals with band-aid colored sticking plaster over one nostril, holding a tube that goes from the nose, past the throat and into the stomach.  That's the suck part--well named.  It's designed to drain fluids that are accumulating in the gut and causing pain and nausea. They also have a bag of IV fluid dripping saline solution to restore hydration and prevent the misery of things like hypoglycemia.

Instead of opting for that (and for reasons I am sure are particular to just what was happening to me in its own particular way), my doc opted to give the gut a total rest.  Nothing was to come in by mouth except sips of water needed for medication.  I was put on total feeding intravenously, with carefully calibrated orange bags of lipids, the kind of food one nurse told me they give babies in intensive care.  I was put on steroids for inflammation, and a hideously expensive drug called Octreotide, injected subcutaneously 3 times a day.  Using only the logic available to hospital personnel, one of those times was about two in the morning.

So for almost 2 weeks, I propelled myself all over the hospital with this hook up.  The only part of the process I could control was to walk as much as possible to stimulate the gut to produce gas, letting us know that normal functioning was returning.  Every fart became precious, and I walked in 30 minute bouts as often as I could, getting up to a total of more than 2 hours a day. 

That's about 1 hour and 45 minutes more than I ever did at home.

The object of all this was to produce poop--and the first time something with two ends came out, I wanted to throw a party.  From there, it was all downhill--or is uphill the good direction?At any rate, the treatment was working, I hadn't starved to death--not that I lacked sufficient stores of reserved fat or anything) and I would live to have some more adventures.

It was all good in the strange Alice-in-Wonderland world of cancer survival, where you become grateful for mercies that come in the strangest disguises.

Might 'a Bin the Sausage

The trouble started at the end of March as I was getting ready for yet another round of Gemcitabine and Cisplatin, my latest chemo cocktail and one, thanks to the bloated bureaucracy of the Alberta Cancer Board, I was having to pay in the thousands for, myself. More about that gong show in another section.

It's a powerful combo, and had been successful in keeping things stable, but at an increasing cost to my stamina.  My guts complained a lot, and so did I.  But as I was laying in supplies for the upcoming chemo week, which always flattened me out, I had an unexpectedly good day and found myself, shopping in my favorite Italian deli, deciding to have a big fat sausage on a bun for lunch.  I never eat big fat sausages on crusty rolls, but it just looked so damned good.

Now, I have no idea whether fat sausages get stuck in your gut or not.  Some of my friends swear up and down that that's what set the whole thing off.  But for sure, over the next couple of days, my gut became increasingly unhappy.  I tend to take a "tough it out" approach to pain, with maybe a fair amount of ostrich thrown in, just in case the trouble might disappear on its own.  So I waited longer than I should have to call my doctor.  I even talked myself into thinking I was having a gall bladder attack.

So some shame on me for not being on top of things a bit earlier, but it's also part of the experience of living with this disease.  From the symptoms that led to my initial diagnosis to this latest adventure, many of the things going on in my body could be signs of other things, or nothing much at all.  Bloating and gut ache?  Who doesn't have that?  Passing gas?  Well, that's a high art in the culture of teenage boys.  Rumbly tummy noises?  When was the last time you were at a luncheon with middle aged women?  One of the truly weird things about ovarian cancer is that it doesn't feel anything like I thought cancer would feel like.

Not that I had any idea of what cancer would feel like--but I continue to be surprised by how ordinary even important symptoms turn out to be.  So when I could hear myself gurgling and roaring from across the room, when my abdomen got distended and full of cramps, and when I felt like throwing up, I had to pay attention, even when I didn't want to.

What got me on the phone was pulling my head out of the sand and going online to match up what was happening to me with what I actually suspected: I had joined the Unlucky 40% Club.  Seeing all this could be, might be, maybe isn't stuff in plain black and white made me cry, and it made me call my oncologist, who had me check into the hospital right away.  "Look," he said, "you live alone.  Come on in and let us take a few tests and look after you for a day or two till we know what's going on."

I started to cry again, packed a little bag, and had Sharon drive me in for a look-see that ended up taking a full 16 days.

What's Going On?

In the past couple of months, I have been phoning and emailing people erratically to catch up on what has been happening to me, health-wise.  It's great to talk, but as a method for keeping everyone in the loop, it sucks.  I've been missing too many of you, in all senses of the word, and I know people get worried when it feels like I've dropped off the edge of the planet.

So I'm going to see if blogging works any better as a way of keeping in touch regularly.  I'll tell you what's up with me, and I hope you chime in along the way so we can catch up with others, too. Nothing fancy.  If I knew how to do that, I'd revive my dormant Face Book account and we could scribble over my walls.  

I'm also doing this to share my experiences with others who may also be living with bowels transformed by cancer.  I've learned a few things since the end of March when my latest adventures started, and I'll try to figure out how to share it so you can find out as much or as little as you want.  I'm planning to include medical stuff, but also my own musings about what it feels like to live with disease that is now making itself  "vocal" in unexpected ways.

Some days it catches me by surprise that I have been living with recurrent ovarian cancer for almost 6 1/2 years.  I've had seven major goes at chemo that put me in the chair or on a bed more than 80 times.  Lost my hair twice, and I haven't felt my fingers and toes properly since last June.  In many ways, my disease has progressed in a text-book fashion, although thankfully more slowly than it does for many.  So the latest adventure, a partial bowel obstruction that occurred at the end of March, came as no surprise.  

Well, that's not true.  It was a shock, but not one of those kinds that come out of the blue.  More like the oh shit recognition that I wasn't going to get past Go on this one.