Tuesdays at the Chemo Unit, Feb 26 and Mar 5, 2013

af7f6ffe85a811e2b45222000a1f97b0_7

I took this photo on the way to the hospital today. It seems to me this is a sign we should all be shown at birth.

Or it could say “Warning: Life is deep and messy and sometimes you can’t see the light.”

****

Last week I had my monthly appointment with my doctor. Because I’m reliably stable, I was given to the young and personable Resident to see. It was our first time meeting and he was very restrained as he reviewed the usual questions.

Then came the  moment when he asked me, “Can I examine you now?”

His eagerness made me laugh and I replied, “I know, you’re just dying to feel this liver, aren’t you?”

He laughed casually as I climbed up on the table. Then he started to actually examine the breadth of my liver and I saw a growing gleam in his eye.

“Oh, this really is exciting! I’ve never seen a liver like this before”

So maybe I shouldn’t feel satisfaction in having such a uniquely big liver, but I did feel a sense of accomplishment. If I’m to have a big liver, I want it to be the biggest. We might as well have some ambition in this life.

Sam

ARS Medica

 

issue2-2

 

I recently stumbled again upon ARS Medica: A Journal of Medicine, The Arts, and Humanities. If you think about it, it’s a pretty cool idea for a journal and right up my alley.

For you medical professionals, they have opened up the .  Here’s the basic info:

Open to all health profession students, researchers, residents, fellows, health care practitioners and faculty working or studying in Canada.

1. Deadline: Monday March 18, 2013.

2. Parameters: All works must be previously unpublished and relate to medical humanities in the broadest sense. Poetry, limited to two submissions per person. Prose works, limited to 1 per person, can be any style (e.g., creative nonfiction, fiction, essay etc.)

If you live in the Toronto area, ARS Medica also has movie viewings and writing workshops. Pass this on to all of the medical professionals in your life. They can probably use it.

Sam

Belly Laugh Friday, January 4, 2013

As usual I’m late – let’s just pretend it’s Friday.

As most of you know, my strange illness has given me a belly that makes me look about seven months pregnant. After so many years I have been able to find the humour both in the queries and the responses I give to the queries.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly-laugh Fridays is my chance to share these humorous tidbits with all of you. Enjoy.

Sam

PW_oran1_1808_11

I try to come up with humorous responses to put people at ease when I tell them about my belly. One of my favourites is the following:

________________________________________________________________________

 “When are you due?”

“Well, actually, I’m not pregnant, this is all liver from a bone marrow disease. Have you ever seen a liver as impressive as this before?

“Well, uh…no.”

“It is a wonder. Doctors gather when I am about in order to marvel over this miraculous organ.”

_____________________________________________________________________________

And while it is said tongue in cheek, there is much truth in that statement. New doctors practically salivate in their eagerness to palpate my liver. Sometimes colleagues and medical students will be retrieved to view my notable organ. “You’ll never see one like this again.”

At a recent ultra sound appointment I was delayed by the technician because the doctor herself wanted to come in and see me. I worried that perhaps she had seen something concerning. In fact, she was simply keen to meet me in person and examine my liver.

I feel like I could use my own carny  “All right, step right up, ladies and gentleman. See first hand the world’s largest liver. You will never see a liver like this again. Come right this way. World’s largest liver. And for only a small extra fee you, too, can palpate this world class organ.”

I actually do keep pressing my doctor to find out if it is the biggest liver she has actually seen, but she won’t commit.

 

Wednesday at the chemo unit, January 2, 2013

bar-mitzvah-boy-jack-rose-007

 

 

Happy New Year to all!

2013. It’s an awesome number to be writing. I was diagnosed in 2000, 13 years ago.

In the Jewish tradition, a boy or girl reaching the age of 13 enters into their adulthood (as celebrated with the Bar or Bat Mitzvah.) So this would mean that my illness is entering its mature years.

An adolescent who turns 13 is not really an adult yet. He or she still lives at home, is financially dependent and can’t fully participate in civil society. They usually do gain some autonomy, however, and start to act more like an adult.

Likewise, my disease is still living at home and is dependent on me for life. At the same time, it’s gained some autonomy. It can go out without me. It does not completely absorb me. It is my disease, it is not me.

Ideally, this gradual separation will one day result in the disease leaving home. But we all know that the trend these days is for kids to  return home to live with their parents when they can’t get a job. Maybe mine will go to medical school and look after me in my old age.

Sam

Belly Laugh Friday, December 21, 2013

As most of you know, my strange illness has given me a belly that makes me look about seven months pregnant. After so many years I have been able to find the humour both in the queries and the responses I give to the queries.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly-laugh Fridays is my chance to share these humorous tidbits with all of you. Enjoy.

Sam

 

24Sphere

 

This week’s visit to the chemo unit presented me with a perfect story for today. In fact, knowing I could write about this event, made the whole thing much more pleasurable.

This dialogue is between myself and the female  patient sitting in the chair next to mine.

Other patient (in a voice that could be heard all over the ward): WELL, WHEN ARE YOU GOING TO HAVE YOUR BABY?!

Me (trying to whisper): Well, actually, I’m not pregnant.

Other patient: WHAT??

Me: I’m not pregnant

O.P: YOU’RE NOT PREGNANT?

Me: I have a big liver

O.P.: YOU JUST HAVE A BIG BELLY?

Me: I have a big liver

O.P.: YOU HAVE A BIG LIVER? A BIG LIVER? HOW ABOUT THAT? I’VE NEVER HEARD OF SUCH A THING. YOU HAVE A BIG LIVER. HMMM

 

And that was the end of our conversation. She simply got lost in meditating on a big liver.

I reflected that maybe it was good that we had this very public conversation. Now lots of people would be forewarned about my belly. Perhaps I should plant someone like this woman in every new situation I find myself in. It would break the ice and people wouldn’t need to ask the question. Hmmm. Any volunteers?

 

images (1)

 

Sometimes I’m asked if I’ve always considered myself a writer. I giggle to myself when I hear that question. Writing used to make my stomach hurt. I did, in fact, do plenty of writing. I wrote essays,  reports, and even a Masters’ thesis. It wasn’t until I got sick, however, that I began to view writing as a friend; as a support; and as an expression of my experience.

When I was in the hospital having my stem-cell transplant  an idea for a children’s story came to me one night and begged to be written.  It was about a pig who was asked to go on a quest. He didn’t really want to go, but the quest asked for him and he had to rise to the occasion. This  story proved to be a useful framework for my experience.  It wasn’t a literary masterpiece, but it was a helpful companion that allowed me to construct my experience in a way that gave me energy and hope.

Sometimes I think that the creative bug bit because I finally had something to write about; I had ‘worthwhile’ subject matter. But then in my travels today, I came across a about textile artists with long-term health problems discussing the creative process. I haven’t read the whole thing yet, but one sentence caught my eye in the summary.

…several participants reported that illness did not only inspire artwork through distress and loss, but through sharpening perceptions, heightening emotional sensitivity and confronting them with the deeper issues of life.

These words leapt out at me as they resonated with my experience perfectly. When I was really sick, I started noticing things more; noticing  and then wanting to capture them. I was seeing differently. I was also asking different questions than before, and wrangled with those questions in my writing.

I couldn’t really talk directly about how I was feeling at the time because I believed, unconsciously, that to do so might unravel me completely. But the writing allowed these emotions to express themselves in a back door manner.

It feels as if my illness turned on a switch that was just waiting to be activated. Perhaps all of us have a creative switch waiting to be activated under just the right circumstances. For some it will be illness, trauma or loss for others it will be love or joy or just simply change. I like to think that every one of us has this potential for creativity of some sort that is lying in wait.

What’s your switch?

Sam

As most of you know, my strange illness has given me a belly that makes me look about seven months pregnant. After so many years I have been able to find the humour both in the queries and the responses I give to the queries.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly-laugh Fridays is my chance to share these humorous tidbits with all of you. Enjoy.

Sam

sphere-glass

As I’ve mentioned before,  I often  pretend to be pregnant when I’m out in public. No explanations needed this way. No  horror or embarrassment with people I will never see again. If I”m out and about the whole day in public, it becomes easy to start thinking like a pregnant woman.

Like the time  I had spent my day travelling around Toronto by public transit. I got on my last streetcar for the day. It was packed and I was exhausted. We were all squished together like the proverbial sardines. In front of where I was standing, two youngish men sat, bulging large packages out into my space and blatantly ignoring me. I tried to push my belly out further, but they either did not see me or pretended not to see me.

I glared at them thinking, “Weren’t you taught to let a preganant woman have your seat?”

I fortunately came to my senses before anything actually came out of my mouth. What was I thinking?

159c6f7e43d911e2892d22000a1fb72b_7

Today was a record. In and out of the chemo unit in half an hour. I’ve started to get my drug as a subcutaneous needle rather than through an intravenous infusion. I love the speed of it.

But that was not the end of my medical day. I had an appointment at another hospital in the afternoon. This hospital is world class and  I receive excellent care there.  But the building design is hopeless. Huge swaths of the hospital are entombed in windowless rooms and passageways. And you really need a GPS to find your way around.

When I went down to the Mayo Clinic in Rochester, Minnesota a number of years ago, the building complex  was also full of  confusing tunnels and corridors.  But  at the Mayo they had guides at each juncture to help direct people to their destinations. Every time we would scratch our heads in confusion, a kind person would approach us and asked us where we needed to go. Sadly at my hospital in Toronto, except for the information desk down in the lobby (nowhere near where you are when you get lost), there is often not a soul to be seen and only a poor map to guide you. I wonder if they every lose people who wander forever in their hallways.

I had some tests and saw one of my favourite doctors in a windowless wing of the hospital. In all, I was trapped there  for a few hours until I could emerge into daylight again. I was so struck by the beauty of the day after my sojourn into the bowels of the hospital, that I had to capture the view of the sunset from the top of the parking garage.

Sam

Living with illness

normal1

The idea of ‘living with an illness’ continues to intrigue me.  Lately, I’ve been thinking about the transition from an illness ‘crisis’ to the ho-humness of living with an illness.

In the first few years after my diagnosis, I was anxious about the illness, the treatment and about dying at such a young age.. There was an intensity and  drama that shaped my days. Life was suspended as I waited either to die or to get ‘back to normal’ and move on from my illness.

Except neither of those things happened. Fortunately, I didn’t die, but life never really got back to normal either. Or, rather, a life of illness became the new normal. It became normal to not have much energy. It became normal to look pregnant. It became normal to hang out at the chemo unit.  I don’t remember when or how the transition happened. When did I come to accept that this was my life?

I look at other patients in the hospital sometimes and see the deer in the headlights look that some have. I remember how it felt to wear that look. I remember those early days and what a scary and intimidating place the hospital was (in my pre-flouncing days).  I remember that time, but as if I’m looking through the wrong end of a telescope. I remember the feelings from before, I can see the change to the present, but I can’t remember when that moment or series of moments happened. It was a subtle change.

While I don’t remember the ‘when’, I can surmise that the ‘how’ was an acceptance of my new life. Not a giving in, but finding a way to say, “All right then, let’s just carry on.” Not that I don’t still have my moments, but they are fewer and farther between.

I’m just now realizing that when I meet people who are hearing about my illness for the first time, that they are thrust into the drama and intensity part. What I need to convey to them is that I’m already in the acceptance part. “Oh, yeah, this is old news. I’ve lived with it for years.” This might just be the key to helping people with the shock of learning my story for the first time.

Sam

 

yawn

Many of the books about cancer and other critical illness experiences reflect a drama and intensity that can make a compelling story for a reader. Right from the first symptom through diagnosis, treatment and resolution there is tension and momentum that makes a story fly. Not that anyone would wish for such an experience, but if you’ve experienced it, it does make for good copy.

The first part of my health story is, indeed, very dramatic: The critical diagnosis of a weird disease nobody has heard of – very dramatic; A heightened fear of death – ooh, lots of drama; and a drastic treatment – what could be more gnarly than a stem cell transplant. It turns out, however, that this drama is all at the beginning of the story. Twelve years later, after many ups and downs, I’ve reached a kind of stasis. I’m still sick, I’m still in treatment, but I’m not that sick at this moment. As my health has become increasingly stable over the years, the sense of drama has flattened out entirely.

As the drama has receded over the last twelve years,, I have gone from worrying about dying of this disease to learning how to live with it. While this process of  learning how to live a life as a patient has been very interesting and dramatic to me, to the rest of the world it’s up there with watching paint dry. My biggest fan, my husband, has been starting to glaze over lately as I read him chapters that take place in the more stable years. So my challenge as a writer is figuring out how to draw out the juice from this time of internal drama and struggle, and make it visible to my readers. But it ain’t going to be easy.

Likewise, many memoirists write about growing up in dysfunctional families. Dysfunctional families also make for great, engaging stories. Sadly, I had a perfectly happy, normal childhood. No alcohol abuse, drug abuse or child abuse. No natural disasters, divorces or financial crises. Boooring. How am I supposed to become a famous writer without material?

Perhaps I would have better luck with fiction?

Sam