Category Archives: patient stories

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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, December 7, 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

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The other night my mother and I went out to a new restaurant in Toronto. A lovely, chatty waitress served us. She was the dramatic type and entertained us with a story about some other patrons.  As we got up to leave she noticed my belly.

“Ah, I didn’t see when you were sitting down. Congratulations. When are you due?”

So now I had a choice. I could tell her the truth:that I wasn’t pregnant, but had a big liver. If I did that, I would likely receive a dramatic response from her. She would feel terrible, she would want my whole story, she would fuss over me. While she was lovely, and I’m sure would be very gracious, I just didn’t want to go down that path.

My other choice was to pretend I was pregnant. If I made this choice, what would I do when I come back two months from now; three months from now; six months from now? Eventually she would need to know or I would have to stop going to the restaurant. Would I have to give up this wonderful new find of a restaurant because I was afraid of a little fuss?

I have to weigh this decision each time I’m asked. ‘Do I tell or don’t I tell?’ is a constant question. What are the pros and cons? Is this someone I’m going to ever see again? Is this someone who I might develop a friendship with? How will this person react? Is this person someone I even want to engage in conversation? This laundry list of question runs through my mind in the split second between when I’m asked and when I answer.

In this case, by the time this waitress noticed my belly I was just tired and ready to go home. I decided to put off the inevitable. I mumbled the usual, “I still have a little ways to go.” and we made a dash for the exit. (I’m sure there are many people who wonder why I’m not more excited and chatty about my ‘pregnancy’.)

One day, when the moment is right and the restaurant is deserted, I will tell this woman the truth. I wouldn’t want to give it up, the food was very good.

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Tuesdays from the Chemo Unit, December 4, 2012

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Tuesday is garbage day in Chinatown.  The bright green trucks are cheerful on a grey day like today and the garbage men who work this route are friendly.

Today I was in and out of my doctor’s appointment quickly (all continues to be well) and am now sitting waiting for my quick treatment. Last week I spoke with someone who was in for many days in a row of intensive chemotherapy – six hours a day. She looked exhausted and anxious and my heart went out to her. I was reminded yet again of how healthy I really am and of the profound stories contained in these walls.

As I flounce in and out of the unit, chatting gaily with the nurses and the other staff, I sometimes feel like an impostor. I might well be going to the hairdresser as to the chemo unit. Flouncing in this place is not always welcome by those who have no flounce in them at all. The large lunches I bring to get me through my occasional long days are not always welcomed by those who feel nauseous. My quick in and out treatment is not shared by most of the people there who might be trapped for hours and hours.

I do try and act a bit more sober sometimes – I don’t really have to flounce, but I don’t want to be funereal either – that would not be helpful. I will make a study of appropriate chemo unit behaviour and get back to you. Maybe I should write a guide book for travels in the chemo unit.

On another note, I stopped in to see Marianne the hot dog lady in front of my hospital. She was serving a gentleman who participates in a choir that uses pictures to represent the lyrics for those that cannot read. How cool is that?

Sam

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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, 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

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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.

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Tuesdays from the chemo unit, April 17, 2012

Today is my long day at the chemo unit. Once a month I get an iron infusion which takes a few hours (watch out Popeye). Because I know it is my LONG day, my girl scout personality kicks in. I come prepared. As I walked over here, I did an inventory of everything I brought with me:

To do:

- my computer – with three running projects

- my book

- my iphone with email, scrabble, audiobooks and music

- my journal (but forgot the pen, dang)

 

 

To eat:

- some leftover pizza from last night

- a sandwich

- some leftover salad

- carrot sticks

- berries

- a pear

- some cookies

- some toasted almonds

- water and tea

(my appointment is at 9:30. At about 9:35 I’m wondering how soon I can break out the food)

 

Additional sundries:

- band aids

- hand cream

- lip balm

- spare bobby pins

- just about anything you might need (except a pen)

 

As I pop another almond in my mouth, I reflect on the other people in the unit.  Many of them walk in with nothing more than a wallet.  I’m in awe. Maybe it’s a zen kind of thing to be able to travel light, have few needs, and be able to sit for four hours with nothing to do. Maybe these folks are meditating. Maybe I am addicted to stimulation. Or maybe they just didn’t follow the motto “be prepared”.

 

Sam

 

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Looking good

One of the perks of having a serious illness is that I often receive comments such as:

“Wow, you’re really looking good”

“You really are looking great!”

I might be in sweat pants, have greasy hair and have bad breath and I still get this feedback.

These comments are often made with a tone of surprise, as if I really should not be looking this good.The surprise may be due to expectations about how a sick person “should” look. Or perhaps I looked so bad for a period of time, that the contrast now is unmistakable. Either way I enjoy the comments as they come.

Of course, I’m not usually quite sure how to respond. If I say “Oh, you’re really looking good too” am I implying there is a reason that they should not be looking good? Or am I implying that they didn’t look good before?  Or should I just say thank you and bask in looking good?

And should I start worrying if people stop telling me how good I look? If they look at me with furrowed brows and a concerned air should I rush off to the doctor and get my blood tests done? Or should I just assume that I’ve been looking good for so long that people now take it for granted?

Or perhaps I don’t really look good, but it’s just something that people say to sick people to make them feel good. Or there is a missing qualifier. “You look really good  [for a sick person that is].

Hmm. Maybe I’ll try putting on some make-up that makes me look gray and pasty and see what happens.

Sam

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Tuesdays from the chemo unit, Mar 20, 2012

 

It’s a beautiful spring day here in Toronto. I was happy to have my usual walk through Chinatown this morning, despite running late. Today I particularly noticed the beautiful Van Gogh inspired mural on the paint store at the corner of Huron and Baldwin. Big swirling strokes of blues, greens and yellows stand out among the winter brown of the neighbourhood.

Meanwhile at the chemo unit…..

I was thinking about beepers today. Once you have checked in at reception and received your little bracelet (one receptionist always calls them diamonds and sapphires), you are given a beeper that allows you to roam while you wait your turn. Everyone sits around the waiting room clutching their beepers, waiting for the magic moment.

The beepers are loud. They are meant to be heard. Everyone in the waiting room hears every beeper. If you happen to have it down on a counter or table, the sound is amplified five-fold. There is no discreet way to be beeped.

When mine beeps, I feel as if I have won the lottery or as if I have rolled up the rim to win the fancy car.   I guiltily go to claim my prize, feeling apologetic toward those that have not yet won theirs.  It may seem strange to have the words “I won” and “the chemo unit” in the same sentence, but it’s the way I feel. I get a little frisson of excitement when mine goes off. “Bingo!!” I want to yell.

When the pager goes off, I’m directed to a particular chair number in a particular unit. My winning number this time was lucky chair number 51.

Today, in addition to my regular medication, I received an iron infusion. The treatment sounds like something that I might get at the spa. “Oh yes, darling, you must get the iron infusion. It will do wonders for your skin tone. ” I appreciate getting the iron, it makes a huge difference to my energy. But I must say it is disconcerting to have something so brown flowing into my body.

Now I’m just imagining the little molecules of iron coursing through my body, telling everybody else to get out of the way and pumping up the energy. Go little iron molecules!

 

Sam

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Tuesdays from the chemo unit, March 6, 2012

So I’ve decided that there is an inverse correlation between the amount of time a nurse takes to ponder which vein would be the best in which to stick my IV and the success of that IV. I would say about 95% of the time if the nurse studies my arm at length, tapping this vein or that vein, warming up my arm with a heating pad or putting the needle in ever so slowly then either the IV will fail (necessitating a second poke) or it will be more painful than usual. The nurses that are confident take a quick look at my arm and …jab… it’s done – clean and almost painless.  You could say I’ve become a conoisseur of sorts.

It reminds me of my oft forgotten maxim of the inverse correlation between my cooking style and taste. The longer it takes to make a dish, the more ingredients it uses, the more chopping that is involved, the more dirty dishes I create, and the greater quantity of the dish I make, the worse it tastes.  If I  make a good, simple meal, inevitably it will be tasty and we will run out before everyone has had their fill. 

I suppose those two examples are not exactly the same, but the common element is fussing and fretting over something. I wonder if it would be universally true to say that the more we fuss and fret or worry over something, the less successful it is. That’s not to say we shouldn’t put effort in, but it seems to me there is a difference between a confident yet open intention and overfussing. 

It seems to be the same with writing of any kind. How can we bring a confident  intention to the process of creating and revising, without worrying over it until it’s dead? Hmmm. Would this apply for artists in other domains? Any thoughts on this?

Sam