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

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

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

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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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

 

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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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

Dear readers,

Lately I have been reflecting on how I can best use this space. I started this blog as a result of my own positive experience with creativity as an outlet for dealing with a critical cancer-like illness. Over the last year-and-a-half I have been delighted with the submissions from around the world and the new connections I have made. I have discovered a world rich with people turning the pain and anxiety of their illnesses into beautiful and thoughtful creative pieces.

As I become more focused on my own writing I am  interested in sharing my personal thoughts both about my experience with the illness and my experience with the writing process. So it is time, again, to shift the focus of Ultra Sounds.

I will continue to discuss my experience at the chemo unit and provide the occasional belly laugh. I will also continue to share creative resources that I discover on the Internet. I will be discontinuing Ultra Sounds Mondays, but will still accept and post submissions as I receive them.

What will be new is that I will focus more on sharing with you the insights and questions that are emerging through my writing. Rooting around in my illness experience has raised some interesting issues for me. Additionally, it feels a bit like an anthropological experience to be entering the world of creative writing as a relative newbie. This experience I would also like to share.

So please welcome the new blog:

Ultra Sounds: My Creative Exploration of the Illness Experience

You may wonder where the word ‘cancer’ has gone from the title. My experience with amyloidosis is, indeed, reflective of the experience of some cancer patients. I attend a cancer hospital, I go to the chemo unit, the treatments I receive are similarly used by patients with multiple myeloma, the nearest cancer relative to amyloidosis. I think, however, that the experience of deep illness ranges beyond the world of cancer and I would like to crack open the discussion to include a more diverse expression of illness.

I hope you continue to enjoy this new and improved version. As always, your engagement in the conversation is encouraged.

All the best

Sam