Category Archives: amyloidosis survivor

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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

PW_oran1_1808_11

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.

 

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Belly Laugh 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 in my responses.  Sometimes I actually look forward to bizarre responses because they make such good stories. Belly laugh Friday is my chance to share these humorous tidbits with all of you. Enjoy.

 

Sam

 

 

 

I smile pleasantly at the hotel concierge as we wait for the elevators. She gives me a knowing smile.

Finally she says, “Honey, you’re just all belly!”

I’m a little startled that someone would so blatantly tell me what I already know. She’s smiling happily though, so I understand that this is supposed to be a compliment.

“Your baby is all in the belly”.

Ah, comprehension blooms.

“Hey Cheryl, come on over here!” Cheryl, another employee obediently trots over.

“Isn’t her baby all in the belly? Me, mine was in my face and in my hips, but she’s all belly. Isn’t she Cheryl?”

Cheryl  looks me over.

“Uh huh, all in the belly”

I just smile serenely and pretend to enjoy the compliment.

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Tuesdays at the chemo unit, Wedneday, September 12, 2012

 

 

 

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

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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.

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Day-after-Tuesdays-at-the-chemo-unit: The Art of Waiting

 

 

 

 

Well, I think it’s time for me to discontinue Tuesdays at the chemo unit. I have had an epiphany! No longer will I spend my time at the chemo unit hunched over a keyboard, squinting at my phone or buried in a book. I have discovered the art of waiting!

Yesterday I decided that I would bring nothing with me – that is no book, no computer, no work, I even erased Scrabble off my  phone. All I allowed myself was a pen and notebook, so I could record any writing ideas I had. I found a quiet corner to nest in and I actively waited. I didn’t fall asleep this time, I simply waited. I looked around me, I relaxed, I listened in on conversations, I thought about my writing, sometimes I didn’t think about anything.  I just waited. And I discovered that in my very busy day, it was a treat to have a time carved out when I didn’t have to do anything, be anywhere or answer to anybody. I could just have a  private and quiet time. The bonus, by the way, was, again, an extremely good blood pressure reading.

I was actually a little sad when the buzzer surprised me out of my meditative mood to tell my it was my turn. Rather than be happy that I was called,  I felt reluctant to enter the world again and shoulder my responsibilities. I wanted to stay in that mellow space

I feel like I’ve discovered a big secret. Why did it take me 12 years to learn this?!! I want to tell everyone – their path to happiness in the waiting room is to…well… wait. I have seen the light!  We could all become waiting junkies. Eager to stay in waiting rooms the longest, courteous about letting others go before us. We might never want to go home or go back to work. “Please doctor, take your time with the patient before me – I would just like a little more waiting time”. Just imagine what a nice place the waiting room would be.

So next time you are stuck in the slowest line at the grocery store, look at it as an opportunity to wait and just see how good you feel.

 

Sam

 

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Tuesdays from the chemo unit, Tuesday, April 24, 2012

There’s a reason I didn’t post yesterday from the chemo unit. After my article last week I decided to try an experiment. I decided that I would try to do nothing while I waited. Or, rather, I decided I would try to actively wait instead of just filling time until my appointment. It was a double trial because I had a clinic appointment before my chemo.

So I bet you are all wondering how I did. I bet you’re wondering if I could last without reading, writing or playing computer scrabble. Well, to you naysayers, I tell you that the first appointment went just fine. I started off by sitting and watching the world go by. I used the time to do some planning in my head for my writing. Planning is my default state when I’m not occupied elsewhere. After a bit, however, I tried to let even that go.

After about 15 minutes, I started to drift and then fell asleep. Sleeping was an excellent way to make the time pass quickly, but it felt like cheat. Besides, it’s not comfortable to sleep in the waiting room chairs. After my sleep I began to get antsy and was tempted to just quickly check my email or check the weather. But I resisted and actually found that I became quite relaxed. So relaxed that when my blood pressure was taken in my appointment, it was nice and low.

Hmmm. So by not doing anything or by actively deciding to make waiting my occupation, I became more relaxed.

I did give in when I went up to the chemo waiting room. “I’m sure I’ve got important emails to answer!” I thought to myself. “I’ll just check them and then begin my “wait” again. This time, however, I was taken in so quickly that there was no time. Next week I shall set myself the challenge to make it through the entire visit without a distraction. How long can you wait?

Cheers until next time.

Sam

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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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Tuesdays at the chemo unit, April 10, 2012

Overnight it seems as if the drivers and cyclists of Toronto were transformed into rude and agressive warriors. It was bizarre this morning on my drive to have close call after close call with drivers who were just in too much of a hurry to wait for a space in traffic. I’m not usually curmudgeonly about traffic, but this morning I felt like there was something in the air. It started me off in a sour mood.

Once on foot, I took a different route to the hospital. Instead of weaving my way through the back streets of Chinatown, I walked along Dundas street and passed by the sweeping facade of the new Art Gallery of Ontario. Looking down at me from the pillars were posters advertising a Picasso exhibit and a Frido Kahlo/Diego Rivera exhibit. As I passed under the luscious images of these extraordinary painters, I felt nourished and hopeful again. Sometimes I forget how much art feeds us and it takes a giant poster of great art to remind me of that truism.

Because of this revelation, when I arrived at Princess Margaret I truly noticed the care that was taken to include art in the hospital. There are beautiful paintings on the walls. If you look down from the glass elevators to the basement floor clinic, there is a wood and stone arrangement that looks like a small stream. The new chemo unit uses artistic design features to make it feel less institutional. Today, more than ever, I noticed these little bits of “food” left in the hospital to feed us patients and was extra appreciative.

Coincidentally, I also received in my inbox the first submission to Ultra Sounds of a painting – oh and what a great painting it is (This is just the teaser, however. You’ll have to wait a couple of weeks before getting any more details). It seemed that art was speaking to me from everywhere.

Enjoy the rest of your Tuesday and may you enjoy many works of art in your life today.

Sam

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Tuesdays from the chemo unit, April 3, 2012

I am sitting in the fancy new waiting room, noticing again what a nice job they did in the renovations to this important space, the place where people are scared, anxious, and in pain as they wait for their chemotherapy. I reflect, once again, on the fact that I am here every week and I never have to pay a penny out of pocket thanks to the Canadian health care system.

I  get exceptional care here at the hospital. Despite my belly aching about too much tape on my arm or a long sit in the waiting room, most of the nurses here are outstanding and my doctors are incomparable. And I don’t have to worry about whether I can afford it or not.

I look around the room and I see people from all walks of life. There’s not a unit for those that can afford it and those that cannot. We all get to enjoy the fancy chemo unit together.

When I gave birth to my son in the hospital, my sister-in-law who lives in the U.S., asked me how much it cost for my time in hospital.  I looked at her stupidly wondering what she meant. After giving it some thought, I remembered that I had had to pay $10 to have a phone in my room, which I have to say I had resented at the time.  When she had her son, a few months after me, it cost her over $1000. She incurred that cost, despite having good medical coverage.

When I was preparing to have my stem-cell transplant, I found a book outlining what I might expect during the transplant. There was a whole chapter on negotiating with your insurance company to pay for what was, 11 years ago, a $200,000 procedure in the U.S.   My cost: the phone rental charge – it may have been $50.

I believe I have used far more than my share of health care dollars, which makes me feel a little guilty sometimes.  But I  am profoundly grateful that through this time of illness, I have not had to worry about how to pay for my treatments. For all of its faults and gaps, I think it is worth celebrating a health care system that offers high quality care without out of pocket costs. I am happy to pay higher taxes to live in such a system, to ensure equal access for all.

There’s my patriotic post for the day.

Sam

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Fear of health

I read an interesting article in the Globe and Mail a couple of weeks ago: http://m.theglobeandmail.com/life/health/health-facts-and-arguments/goodbye-lupus-you-dont-own-me-any-more/article2311757/?service=mobile

This entry to the Facts and Arguments section was submitted by a woman who struggled with lupus disease for 25 years before being essentially cured by an experimental treatment. While she was thrilled, there was an adaptation that was necessary to adjust to this new normal of health.

When I was diagnosed 12 years ago with my illness, we were ploughing along on a trajectory of kids, jobs, and new home. We had our life mapped out pretty well when we were suddenly forced to take this unexpected detour created by my diagnosis. We have spent years adjusting. I have had to adjust to a different level of health and a changing body.  We have had to adjust to regular medical appointment and changing expectations of how I could contribute to the household. We have had to adjust to changed expectations of how our life would unfold. I have had to split my attention not only between family, home and work, but I have also needed to stay focused on struggling for good health. So much of my daily experience, including how people interact with me, is shaped by my illness. As much as I protest that I am not my illness, it has a profound influence over my life and my identity. Hey, I wouldn’t be blogging if it were not for my illness.

What if tomorrow, I was told that a full cure has been found and that I could go on to lead a “normal” life? After the champagne celebration, I would likely have a crisis of identity. It would probably be terrifying. What would be my next steps? I couldn’t go back and just pick up where I left off. I would have to reconstruct myself again with another new normal; a post-illness normal. There would be a big void in my life. A welcome one, but a big one nonetheless. I could see it feeling like stepping out into an abyss.    So many possibilities, yet I would have to get used to trusting my health on a daily basis.  I would have to shoulder more of the burden of work.

It is interesting how the idea of being well again holds a mixture of excitement and fear. I hadn’t thought about my own feelings until reading this article and my reaction surprised me.  Perhaps one day a cure will be a reality that I will have to be brave enough to face. I can only hope.

Sam