Tag Archives: living with cancer

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Tuesdays at the chemo unit, February 12, 2013

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Well life at the chemo unit is uneventful today. I’m in for the long iron infusion today, but it’s going quickly and I have a cozy little cubicle to myself.

Yesterday I had an appointment at another hospital with one of my many specialists. In the bathroom, as I sat down on the toilet, I noticed an interesting sign:

“Attention: Please put paper towel in the waste basket and not on the floor.”

This sign plagued me and I considered its significance. I came to two possible conclusions. Maybe there was a great trend of people putting their paper towel on the floor. They just weren’t sure what to do and now that there is a sign, they have seen the light and always put their paper in the basket. The other option is that there is someone working at the clinic who really likes and believes in the use of signs.

The second conclusion was fortified when I stood up and saw another sign behind the toilet. “Attention: Please flush the toilet with your hand and not your foot in this place.” Hmmm. Most of the patients I saw out in that waiting room could barely lift their feet up stairs much less do the contortions that would be necessary to flush with their feet. How would one even know if toilets were being flushed with feet?

If people really are throwing their paper towels on the floor will the sign change their behaviour? Why do they throw it in the floor? Perhaps instead of writing that sign, the sign writer should spend more time in the bathroom figuring out why people throw paper towel on the floor.

Of course we need signs. I want to know not to enter a one-way street the wrong way or to know if I’ve arrived at Yonge st., but I think signs often reflect the personality of the sign writer more than they reflect an  actual need.

I looked around for more signs. I thought there might be others like, “Attention: please turn on the taps with your hands and not your nose in this place.” or “Attention: Please pee into the toilet and not the garbage can.” You never know.

Sam

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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

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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:

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 “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.”

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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.

 

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Wednesday at the chemo unit, January 2, 2013

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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

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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

 

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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?

 

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Tuesdays at the Chemo Unit, Tuesday, December 11, 2012

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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

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Living with illness

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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

 

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Belly Laugh Friday, November 16, 2012

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

For about five years I was on the infamous medication, thalidomide. I resisted taking what I viewed as an evil drug for a over a year after my doctor introduced the idea. Finally, I realized that it was necessary and gave in.

I remember taking the first pill and thinking that this moment would be forever marked as the first time thalidomide entered my body. I made much drama of it, but in the end it was very effective in helping control my illness for a number of years with very few apparent side effects.

Because of its checkered history I was required to take a very specific blood test each month. This scenario was not uncommon when new workers appeared at the blood lab:

“Number 8, up to the window please.”

“Hi, I’m here for a pregnancy test.”

The woman looks me up and down several times.

“Aaah…” She is stuck for words. Her mouth hanging open.

“Yes, really I’m here for a pregnancy test.”

“Okay, honey.” she says as if I need to be humoured.

If I’m in a good mood I explain in detail how I’m really not pregnant. Sometimes, though, I just let the technicians think that I’m a little self-deluded.

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Belly Laugh Friday, November 2, 2012

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

 

 

“Can you take us to the Chelsea Market?” I say, out of breath from running. I’m trying to convince this New York cabbie to actually take us somewhere. My sisters, mother and myself are in New York  to celebrate some significant family birthdays. We have been unsuccessfully trying to hail a cab for the last fifteen minutes. I spot this one across the street at a hotel and dash over to it before it disappears.

The driver looks me over and says, “I’m not really supposed to do this. I could lose my license. I’m from Jersey.”

I try to look somewhat pathetic and very pregnant and flash him a smile. “Oh we’ve been trying for so long to get a cab, but we haven’t been able to get one.”

He looks me over again and makes a decision. “Okay, get in.”

I point out my sisters and mother who are waiting for the light to change so they can cross.

He says, “That’s okay,” and then proceeds to do a U turn across six lanes of traffic to pull up smoothly in front of my family.

They all pile in and thank him profusely (being the Canadians that we are). He starts driving and then says,

“You know I really shouldn’t be doing this. I’m from Jersey. I could lose my license. But in her condition (he jerks his thumb at me) I thought I’d better take you.”

We all smile and thank him again and continue smiling to ourselves.

As he drops us off, a tired and harried looking family with a small child look relieved to see him.

“Sorry,” he says without any real remorse, “Can’t take you,” and drives away, tires squealing.

After that I am the designated procurer of cabs.

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Ultra Sounds Mondays, July 2, 2012

It’s a lazy long weekend here.  I hope you are enjoying your Monday.

Today I have the pleasure of introducing you to Susan Chase who has submitted excerpts from her theatre movement piece called Susan’s Undoing.

In her own words:

Susan Chase is a unique artist; a ballerina-turned-actress who has used her performance skills to inspire others to tell their own stories. After 10 years as a drama therapist in a juvenile psychiatric hospital, Chase was challenged to put her theories to the test when she herself was diagnosed with breast cancer. Her response to the ordeal was to create a movement theater piece, Susan’s Undoing, which she has performed for general audiences, cancer support organizations, and hospitals. Susan’s Undoing has received wide acclaim from theater critics, cancer patients and medical professionals. 

A nationally recognized actress, playwright and arts therapist, Chase has written numerous plays and articles, dealing with arts therapy approaches for diverse populations, including individuals with a variety of physical and cognitive challenges, as well as at-risk and incarcerated youth.

For more information about Susan Chase and her work in arts therapy and health/wellness, and to book or see a live performance of Susan’s Undoing, visit



http://www.rockethub.com/projects/6875-susan-s-undoing-live-play-documentary-film


or visit Susan’s Undoing on Facebook.

Enjoy!

Sam

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Tuesdays at the chemo unit, June 19, 2012

Today my husband, Daniel, drove me in for my treatment. While I love to have the time with him, there is always a bit of trepidation about these trips.

You see, I actually like to go alone to my appointments. I feel independent and free to do whatever I need to do. I can chat with people or be completely quiet and alone. If I’m tired I can just sit and nap. I can be very focused on dealing with whatever that day brings.

When you bring someone, all of a sudden you have a guest that needs looking after.  I know, they are there to support me, but the reality is that my “support” person, can’t stand waiting around hospital waiting rooms. He is not as used to the waiting as I am. He wants to be outside.  He gets fidgety, which drives me crazy.

We do have our strategies. Daniel goes for walks during the long wait times. If it’s a tired day and I need the elevator, he takes the stairs. He paces around the long hallways observing the people there. It works out okay.

Once I’m out of the hospital I’m a different person. I don’t have that same need to be alone and focused. I feel more social and more able to think beyond my own needs. Having Daniel there now seems festive. It seems that I’m only curmudgeonly in the hospital.

Sam