Category Archives: living with cancer

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Tuesdays at the chemo unit, Feb. 19, 2013

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If you ever spend time at a Starbucks you will hear of an infinite variety of drinks ordered to the exact specifications of each customer.

“May I have decaf grande soy sugar free iced caramel macchiato?”

“A tall nonfat unsweetened green tea latte please.”

“I would like to order a venti mocha frappuccino with soy mocha drizzle, matcha powder, protein powder, caramel brûlée topping, strawberries, two bananas, caramel drizzle frappuccino chips and vanilla bean.”

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I feel a bit like a Starbucks customer when I get my injection each week. The subcutaneous injection can be quite painful and leave a big bruise if the nurse does not administer it quite right. And what constitutes “quite right” varies from person to person. I imagine each person giving their own specific directions to the nurses.

“The secret is to leave a little air pocket in the needle.”

“Keep the skin  flat and inject quickly.”

“Pinch the leg hard and inject really, really slowly.”

“Can you put the heating pad on the site first to warm it up and then inject the needle at an exact 90 degree angle and whistle Stairway to Heaven to distract me?”

In an earlier era when the medical professionals were more god-like, would we have  dictated our own treatment in the same way that we order coffee or is this behaviour a sign of the times? On  the one hand, the patients feel more empowered now to ask for what they need (and truly, when the nurses do it the ‘right’ way, I experience significantly less pain). On the other hand, do we sometimes just need to let the professionals get on with their job and not pester them with onerous demands to meet our every need (maybe the whistling is a bit out of line)?

I’ve been very proud of my increased ability to advocate for myself since getting sick. At the same time, I’m just one of thousands of patients who want individualized care in a financially stressed system. I realize I must balance my needs against those around … ” Hey, slow down with that needle!”

Sam

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Tuesdays at the chemo unit, February 12, 2013

signs

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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Time for contemplation

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Jeanette Winterson, in her fantastic memoir Why Be Happy When You Could Be Normal, writes:

“The one good thing about being shut in a coal hole is that it prompts reflection.”

She goes on to meditate on life, happiness and normalcy; results of the reflection that occurred during the many hours she was locked in the coal hole by her mother.

Now I don’t mean to suggest that a hospital waiting room is like a coal hole, but there is a similarity of ‘in-betweenness’ in the situations. In both cases, the job we have is to wait for the next phase, whether it be freedom from the coal hole or the opportunity to go in to an appointment. How we use that time is up to us, of course.

The waiting room does have more distractions than the coal hole, which is why, perhaps, Jeanette’s in-between time was more productive and profound than mine generally is. I have returned to my old ways of reading, writing and checking email in the time before I am called in. I have lost some of my capacity to just sit and ‘be’ during this time.

I would like to reactivate that part of me that knows how to wait. That will be my goal for tomorrow’s visit. Who knows what deep thoughts might appear. I’ll keep you posted.

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

 

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?

 

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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 23

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

 

 

When my son, Zev, was younger he would be my belly ambassador. I remember one interaction in particular:

Sales clerk: Oh, when are you due?

Zev: My mama’s not pregnant.

The expression on the sales clerk’s face indicates that she thinks either Zev is playing an imaginative game or I have not yet explained to him the reality of the major change about to happen in our family. The look she gives Zev is somewhere between amused and condescending.

Sales clerk: Oh, she’s not is she?

Zev: No, she just has a big liver.

The sales clerk looks at me and at my belly sceptically and then back at Zev.

Sales clerk: A big liver?

Zev: Yes, but she’s going to be okay.

The sales clerk looks at me again and this time I nod in agreement with Zev. Her face registers a multitude of emotions – shock, horror, sympathy, curiosity and she appeals to me with her eyes to continue the conversation. But I believe Zev has summed it up nicely. I have a big liver and I’m going to be okay. So I just wish her a good day and toddle off with Zev.

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Belly Laugh Friday, November 9, 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

 

 

 

“Are you pregnant?” 7 year old Jason asks, looking wonderingly at my belly.

“No honey. I look pregnant. But I’m not. I just have a big liver.”

Jason considers.

“Polar bears must really love you” he says with a big grin.

“Why is that?”

“Because polar bears really like to eat liver.” He pronounces, his grin overtaking his face.

I was in love.

“Well, I’ll watch out for those polar bears,” I promised, grinning right back at him.

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Let’s try this again – Ultra Sounds Mondays, October 8, 2012

My apologies to you all and to Kate. None of her cartoons showed up in yesterday’s posting. Let’s see if it works today.

Enjoy!

Sam

 

Cartoonists hold a special place in my heart. Aside from my love of them leftover from childhood, there is something about the whimsy of cartoons that allows the dark side of a situation to be exposed to the light. I recently, happily stumbled upon a new cancer cartoonist and her humour is spot on to describe the life of a cancer patient (or any seriously ill patient for that matter).

This wonderful cartoonist is Kate Matthews and you can find her in all of these different ways:

cartoonsbykate@gmail.com

www.cancercartoons.com

www.facebook.com/cancercartoons, www.facebook.com/cartoonsbykate

twitter: @cartoonsbykate


http://www.thecartooniststudio.com/Cubicle.aspx

Her story is woven in through her cartoons. Enjoy.

 

Sam

 

One day, close to the end of his life, my daughter offered my Father-in-law a handful of Red Hots (bright-red, heart-shaped cinnamon-flavored candies).  He gestured with his hand and said, “ No thanks, I’m off the Lysinopril” (these were his bright-red, kind of heart-shaped, blood pressure control pills).  We all burst out laughing and for a while, his pain and our sorrow were lifted away.  Eventually my memory of that moment morphed into a cartoon:

 

Shortly after my Father-in-law died, I too was diagnosed with cancer.  At first, I fell into that deep dark hole of despair that seems so dreadfully inescapable.  But then I remembered how we had laughed and how much it had helped.  I began to construct a ladder of laughter to help me get out of my hole:

 

 

Cartooning saved my sanity. I was seeking that bright quick moment of mental relief, the laugh that pushes the fear and the pain away. Anytime I found it, I drew it.  I drew in the doctor’s waiting rooms and in the chemo chair, in my living room and in the hospital.    When my treatment was finished, I collected the cartoons in a book in hopes of sharing a few bright moments with others.  We all know that there’s not one damn thing that’s funny about cancer, but no one needs a good laugh more than we folks who are fighting it.  That’s why I’m still cartooning, why I try to post a new cartoon everyday.  When we laugh, we feel good and when we feel good, we get stronger.  Let’s hear it for laughter!

 

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Ultra Sounds Monday, September 10, 2012

Happy Monday to all. Today I am pleased to share with you the work of an artist I recently met online. I saw Gina Duque’s art on the cover of the journal Current Oncology and was blown away. (Every month this journal features a different artist – be sure to check out their archives. )

I’m going to tempt you with one painting today and you can look forward to others at a later date.  To read more about Gina and see more of her work you can click here.  Her works are for sale as well. Enjoy!

Sam

In her own words:

About the Artist

 

Whether it’s through prints like ‘Calypso’ or paintings like ‘Eukarya’, the essence of my work stems from creating mystical images inspired by cellular biology, the concept of healing and my interest in exploring the spiritual connection between the body and mind. I am currently using images derived from medical imaging technology to portray cells, tissues and systems of the human body.

During the last two and a half years of my cancer treatment, creating artworks has become a therapeutic and fulfilling process, eventually evolving into a spiritual and mindful practice.

Gina Duque is an emerging artist currently attending the University of Western Ontario in London, Ontario for her Bachelor of Fine Arts Honours Degree. Originally from Cali, Colombia, she immigrated to Canada with her mother at the age of eleven to Walkerton, Ontario.

About ‘Eukarya’

“Eukarya,” is a mixed media painting that explores the concept of the body as the ultimate self-regenerating system through the power of visualization and the mind -body connection. Fantastical in nature, “Eukarya” is a symbol for vibrant, radiant health that arises from the harmonious balance between the mind, body and soul. 

Eukarya

by Gina Duque

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Ultra Sounds Monday, June 25, 2012

Good morning all,

Since I have a little pull with the moderator of this blog, I decided to post one of my own poems for today’s submission.

I wrote this poem after stumbling across an old picture of myself on a canoe trip before becoming ill.  I was blinded by the memory of once being strong enough to carry a heavy backpack along a three kilometre portage. I had forgotten that once upon a time, I wasn’t sick. Here was proof. The poem reflects the mixture of emotions I felt in response to this picture.

Enjoy

Sam

 

 

 

The Girl with the Backpack

 

The picture is a little fuzzy

She didn’t want to be photographed

The large backpack was heavy

The long portage waited

“Just take the picture already”

Tall and strong

Long hair pulled back

With the wisps blowing in the breeze

She was ready to hack it off

So heavy and hot

Not knowing that a few years later

Chemotherapy would do the job for her.

 

She couldn’t know this would be the last trip

That her changing body wouldn’t allow her to go

to that place of deep quiet and true darkness anymore

She was a bit crabby that day

Maybe it was that time of the month

The chemotherapy claimed that too

Something she never thought she would miss

You want to tell that girl to shape up

To stop whining about the heat and mosquitoes

To pay close attention

So that she could replay the details later

 

I would like to be her again

Just for a day

To remember what was:

the smell of green

The cool silkiness of the water on bare skin

The clarity of the stars at night

The feel of paddle in hand

Traveling away and away

 

Yet for all of her physical vitality

She was a frail creature on the inside

Jell-O

She was easily led away from herself

She writhed with self-consciousness

Avoided the hard things

And felt herself always on shifting sands.

She didn’t know how to be her.

 

She is stronger now

With fortitude she never imagined

Grounded like a tree

Yes she would like to hide in her old self a while

Trade up for a healthy body

But would not sacrifice the hard-earned sturdiness

that helps her now come back from the woods and face the future.