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

 

 

 

Yesterday was a great day at the chemo unit. I had a nurse I’d never had before who was so skilled I barely felt the needle go in. Sigh. Happiness is a good nurse.

Then, for the icing on the cake, a gaggle of my favourite nurses were clustered in the areas around me. I felt like the most popular kid in school with the nurses all smiling and calling, “Hey Sam, how’s it going?”, “See you later Sam.” “Sammy!” (there’s one nurse, who, inexplicably calls me Sammy – it’s quite endearing actually)

I felt enveloped by this lovely group of men and women who take such good care of me and who know me and who make the chemo unit as pleasant a place as possible to be. They all know my name is not Gayle, even though that’s the name on the card. They all know I’m not pregnant. They are not gooey sweet, they are just skilled,  good hearted and light-hearted and love to laugh. And they all care.

 

Aren’t I lucky?

 

Sam

The other day I had Michael as my chemo nurse. After all the time I’ve been coming, I’ve never had Michael as my nurse even though I’ve met him and his great sense of humour several times. While he got me set up, he asked me how many times I’ve been to the chemo unit to receive this drug. I was dumbfounded to realize that I was almost at 100 visits.

They have  a bell that you get to ring when you are finally discharged from your chemo. What happens if I am never discharged? In fact, if I am discharged it will not be because I am cured, but because the drug has stopped working. So I don’t think I will ever get to ring that wonderful bell.  I think they should have a second bell. A bell not for the people leaving, but for the lifers like me. Every time you hit a milestone like your 100th visit, you would get to ring the bell.

Or maybe it shouldn’t be a bell. it’s not exactly a celebration, but it’s not exactly bad news either. If you’re still “vertical” that’s the good news. But you’re still going to the chemo unit, so that’s the not so good news. Maybe something that sounds like a duck would be a good compromise. Whenever you hear a quack coming from the chemo unit you will clap for the tenacity of that patient.

And what about something for the spouses and families of the patients. They should get to ring something too as they’ve been walking on this path along with the patient. Maybe they should get a car horn to honk – after all they probably end up doing lots of the driving.

Oh, the chemo unit could become an even more musical place if I have my way.

Sam

Today’s submission is our first video – hurrah!

This video was done by a lovely woman named Olivia Everett from Florida. Olivia was diagnosed with Stage I ovarian cancer while she was pregnant. She made this video on the day she was to shave her head because of increasing hair loss. Both Olivia and her baby son are doing fine at the moment.

I love this video both for its humour and whimsy in the beginning and its touching honesty of emotion as her head is being shaved. I was certainly in no shape to make a video like this when my husband finally shaved my head.

Enjoy!

Sam

Okay, let’s talk about hair, specifically losing one’s hair with chemotherapy.

I had a stem cell transplant in 2000 and in preparation for losing my hair I cut off my long, long locks ahead of time – thinking I would get my mourning over with before I began the chemo.   It was fairly traumatic the first time although I did come to enjoy just going to the barber’s for a buzz and the low maintenance of buzzed hair. One of the encouraging things that happened was that my son, a baby at the time, did not even notice when I came home with a buzz cut.

But getting my hair cut wasn’t  the same as losing my hair. Losing one’s hair is just the pits  - no getting around it. While some women look completely excellent bald, I was not one of them – wrong head shape. My husband took great delight in doing the final shave, but I was quite discouraged. So then there was the question of what to wear on my head.

The choices were not appealing. A wig was out – I guessed it would be hot and itchy and everyone would know it was a wig. The little kerchiefs offered at the clinic just screamed cancer patient. I went through my scarves at home and found a beautiful light scarf of green and yellow hues that tied quite nicely with a turban-like effect. It became my uniform. All of the pictures of me from that time, gaunt and pale, were at least brightened by this colourful scarf.   I also had a beautiful velvet hat that I confess came from Disneyland. My husband was from California and his first summer job was working at Disnelyand. The first time I went there we made a pilgrimage to the magic kingdom and this beautfiul hat was my keepsake. I wore the hat to a special event, it being velvet and all, until some smart aleck decided to lift it up to see what was underneath. I put the hat away then. The scarf was safer.

A friend of mine gave me a turban of gold lame. It was a stunner and required a very certain type of event to carry it off. Actually the wearing of it was an event all in itself. I believe I wore it once. I ended up giving it back to this dear friend when she herself later lost her hair to chemo.

So much of our vanity is tied up in our hair. I tried to pretend I was like the beautiful woman who disfigured herself, so that she could work at reaching enlightenment without distraction, but it was tough. At that time I didn’t want enlightenment, I just wanted hair. I didn’t want to look like a sick person.

Fortunately my hair grew back and came back curly. I had always wanted curly hair, so there was some consolation in the final outcome.  I see many women at the chemo unit bedecked in some kind of headgear and I truly see them as being so beautiful and brave.  Their lack of hair symbolizes the hard path they are currently on and I have some empathy for what they are going through. My favorites are the women that are bald and proud.  Some  of them look so good bald I almost want to tell them to keep shaving their heads. .

Most men that I see don’t seem to feel the need to cover their bald heads, except when it is cold. Their path is no less challenging than for the women I’m guessing, except that they don’t seem to need to hide under a head covering.

What are your stories?

Sam