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

Time for contemplation

coal-hole-2

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, 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.

 

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

Welcome back everyone! It’s a fresh new fall and I’m eager to be back in blogging mode again. The summer has been filled with fun and some exciting new projects and connections, many of which will unfold throughout the fall on Ultra Sounds.

But to the business at hand. Today is Monday and that means it’s the day I get to share a submission with you. For the first submission of the season I am delighted to share our first musical contribution.

Take a moment now to stop what you are doing, put aside the rest of your emails, minimize Facebook, shut the door and close your eyes to enjoy this jewel from Dan.  I have connected with Dan through his website . Our overlapping interests made it inevitable that we would eventually find each other. Do take a look at the site and see what Dan is up to both in terms of the site itself and his work in the community.

Remember now, close your eyes and create the space in your day to fully enjoy this little piece.

Sam

 

 

In Dan’s own words:

It was lovely to be asked the other week by Sam to submit something on her blog. I believe it will be the first musical contribution. As both an architect and singer, I feel my life has been a full and enriched one. Being creative has brought me into contact with many interesting people from different walks of life. I have been living with cancer since May 2010. Since being diagnosed I have wanted, if at all possible, to remain creative.
 
There are many examples of people remaining creative whilst living with cancer. One personal example for me is the composer Gerald Finzi. Whilst living with cancer he continued to compose some beautiful songs. In fact I believe his creativity increased after his diagnosis. I find singing his songs and those by other composers helps me cope and reaches out to others.
 
Recently I gave a concert during the day with Kathy my pianist for the patients, carers and visitors at a hospital in Berlin. They have a piano outside the oncology ward in a large spacious corridor with good acoustics. The following is a song selected from a recording I made that day. It isn’t a very good recording but manages to capture the moment. The song is in german and by Schubert and is called ‘Der Neugerige’, which means curiosity, and comes from the song cycle ‘Die Schöne Müllerin’. In short, the youth in the song is asking the brook that powers the mill wheel whether the miller’s daughter loves him. I hope you enjoy the short song.
 
Thank you for listening
 
Dan

Well my friends,

The sluggish summer days are about to slow down to a full stop as I depart for vacation.

No, no, please don’t cry.  Really. Don’t make this harder than it is. I will be back.

In the meantime, I found a very entertaining blog that you might want to check out (but don’t get too committed – I need you to come back). The blog is called  and it had me laughing.

I will leave you with one other little gem. I just rediscovered a yiddish saying that my grandma taught me. She was very sophisticated, but would throw in a smattering of yiddish from time to time.

The saying is this: ”Hak mir nisht ein tshaynik”

Which, as I understand it, translates to mean, “Don’t knock my tea kettle.”

Isn’t that a wonderfully satisfying expression to have in your back pocket? Just think, the next time someone tells you that you caused your own cancer because of your unresolved anger issues you can just reply, “Hak mir nisht ein tshaynik.”

Until the next time,

Sam

 

Hello everyone,

My apologies for the quietness of the blog these days. It’s these sluggish summer days. You could peel me off the couch when it’s as hot as it has been lately in Southern Ontario. Once the cooler weather arrives, I will be back in full swing.

Today’s submission comes from Kelly Thorarinson,a lovely woman I met at an Art for Cancer Workshop. I love the colours and texture of this painting as well as the title and what it represents. Do check out Kelly’s other work and her blog.

In her own words:

Re: Resolving the Screening dilemma

I worked on this piece through Art for Cancer Foundation’s 5 week workshop.  I call it resolving the screening dilemma as that is actually part of a typewritten piece that is visible under all the colour and texture…. a newspaper clipping. That is how I first decided to name this piece, but really there is so much more.  Those words resonate with me because there is complexity to cancer treatment.  Even as a stage 1 breast cancer patient where treatment is fairly straightforward, there are still many questions.  One, of which, is about screening as the very screening methods and treatment for breast cancer can also cause cancer.  Sure is a dilemma.  The other aspect of the title is that in doing art I was able to solve the dilemmas of cancer by giving them a voice and hours of escape through art. More of my art can be found at and I write a blog at

 

 

The Screening Dilemma

by Kelly Thorarinson

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

Today I am pleased to post some more poems by Margery Hauser.  Once again in her own words:

In 1999 I was diagnosed with cervical cancer and had surgery that, at the time, we all thought had taken care of the problem.  However, it came back for a return engagement in 2008 and again in 2010, now taking up residence in lymph nodes and moving its way up from my pelvis into my abdomen. The poems below were written in response to various experiences during diagnosis and treatment.

Today’s poems are quite different from each other.

The first, Chemo Blues, is “definitely irreverent, but it reflects my personal feeling that finding the humor in a difficult situation is a way to maintain some balance”

“How do I tell you is really an expression of anger and frustration in reaction to all the people who told me how much they admired my strength and positive attitude.  Their words, undoubtedly spoken with the best of intentions, made it difficult for me to share my fear and sadness honestly.”

 

Until next time…

Sam

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Chemo Blues

 

Oh the first line of the blues is always sung a second time (oh yeah?) 
 First line of the blues is always sung a second time (kinda smooth!) 
 So by the time you get to the third line you’ve had time to think up a rhyme.

 Richard Stilgoe, Poppa’s Blues, Starlight Express

 

I’ve got those paclitaxel topotecan chemo blues.

Oh yes, those paclitaxel topotecan chemo blues.

It’s made my thumbs a little numb,  my toes are tingling in my shoes.

 

Treatment’s made me bald, ain’t got no eyebrows or eyelashes.

Yeah, treatment’s made me bald, ain’t got no eyebrows or eyelashes.

The upside is it’s cold and chemo gives me cozy, warm hot flashes.

 

My legs ache from the taxol and the topo makes my white cells disappear.

Oh, my legs ache from the taxol and the topo makes my white cells disappear.

On the other hand I haven’t had to shave my legs in almost half a year.

 

These drugs make me so tired, I just want to sit here staring at TV.

I said, these drugs make me so tired, I just want to sit here staring at TV.

It’s the best excuse for doing absolutely nothing, lazy as can be.

 

Some folks say it’s bad taste to joke when cancer’s got you by the nodes.

I hear some folks say it’s bad taste to joke when cancer’s got you by the nodes.

But I think all of us on this journey find our own kinds of roads.

 


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How do I tell you

 

it’s hard to walk upright

with the weight of your admiration

pressing on my shoulders

 

too difficult to breathe

swaddled in your blanket of love

 

impossible to swim

through your riptide of caring

 

Your heartstrings tentacle tight

around me     I am confined

constrained   contained   restrained

 

Image   icon

idol    ideal

I dream Pinocchio dreams

of being real