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

 

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

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

 

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

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

I read an interesting article in the Globe and Mail a couple of weeks ago: 

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

 

As I lumber through the dregs of yesterday’s snowstorm on my way to the hospital today, I reflect on how I am feeling about going to the chemo unit. What is my reaction to this weekly ritual? I think it’s safe to say I am not thinking “Yippee, yahoo, I get to go to the chemo unit. Walk faster, I want to get that needle sooner!” At the same time, I am not dreading my visit. I do not have any gut-squeezing anxiety about my trip here. (It’s easier for me than some visitors to the chemo unit because I do not associate my visits with throwing up and losing my hair. My drug is relatively easy to tolerate.)

It surprises to me to understand that after almost two years of coming here, I actually have an affectionate feeling towards the chemo unit. I may belly ache a great deal about the wait times; I may complain about feeling like I am in a black hole on a given day. But that whining does not diminish the bigger picture of the people that work here.  I realize that any place where there are kind and caring people, can begin to feel a little bit like home. I have, in a sense, my chemo family that knows me and looks out for me during this weekly visit.

I smile over this realization as I arrive on the fourth floor. I am greeted by all three of the receptionists with friendly smiles and jokes. Michael checks me in quickly and I  relax, settle in for the wait and wonder which family member will take care of me today.

Sam

After visiting the Boston Medical Center eleven years ago for a second opinion, I was sent a copy of the resulting doctors’ reports. I was quite flattered when I read these letters. They all began with statements like:

” We had the pleasure of seeing Samantha Albert….”

“It was a pleasure to meet Mrs. Albert and her sister….”

“Many thanks for referring Mrs. Samantha Albert a delightful 33 year old lady from Toronto.”

I began to get a bit of a swelled head until one of my doctor sisters pointed out that this is standard practice. Was she saying that I was not delightful?

I mulled over this idea for a while and then began to wonder how hard this kind of phrasing would be with really difficult patients. (Since I’m delightful, I’m sure it is not an issue for any of my doctors)

Imagine having to say, “It was a pleasure to meet with Mr. Brown today.” When what you would really like to say is “Mr. Brown’s  problems are all in his head” or “Mrs. Oberlin whined the entire appointment. Our meeting with her was longer than I could bear” or “Why did you plague me with Mr. Logan? He was argumentative the entire visit and then stole my best pen!”

Or imagine trying to find seventeen different ways of saying “It was a pleasure to meet…” just so you wouldn’t get bored.

“It was terrific to meet…”

“I’m so glad I had the chance to meet…”

“It was a joy to meet…”

“It was a rare treat to meet…”

“It was a day of bliss when Mr. Luciano walked into my office”

I had never thought about the creativity involved in writing these reports before. Those skilled doctors…

I’ve decided to start a new feature at Ultra Sounds.  Drum roll please….. Tuesdays from the Chemo Unit.

Every Tuesday I get to spend time at the chemo unit and I thought I would undertake some firsthand reporting of my experiences. This is a place full of excitement and interesting people. In fact, I was thinking that the waiting room of the chemo unit could make for a great television show – “chemo”. I can just see the cast of humorous characters that could populate the show. The wise-cracking bald woman, the elderly man with the cane who can’t speak English, but makes lots of funny jokes with his eyes, the woman who comes with her three grown children, her husband and her cousin Irving because she needs the support.

Or maybe it could be some kind of survivor reality tv show – if you get voted out of the waiting room, you have to wait longer for your chemo.

So here I am today, buzzer in hand waiting for “my moment” when I will be called in. What colour ward will I be assigned today? Purple? Orange? The staff seems to rotate through the different wards, so there are no guarantees on who I might get. Will it be the guy who shuffles through his work in the slowest possible way? He’s the one that takes three trips when one will do and likes to use lots of tape and bandages to make my line secure for the three second injection. Or will I get Manny or Giselle, two of my favorites, who get in me in and out in record time. They are poetry in motion – friendly and warm, but totally efficient in their actions. Will I get someone who insists on warming up my arm with the heating pad? (Snore) Or will I get someone who gives me a quick tap and says “Good veins” and sticks the needle in. Oh, the suspense…

Ah, the buzzer is telling me that my time has come. Until the next time…..

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