Prairies Road Trip Adventure - Day 1

We landed in Winnipeg late last night to thunder and lightning and rough winds.  We heard that there had been a few tornadoes that had passed through.  We were glad that our plane had landed safely.

It was past 10:00 when we got to our hotel so there was not much to do but get ready for bed.  Though it is a nice hotel, the double beds are small when you share them with children who like to sleep in the middle.

This morning we found our way to the Assiniboine zoo to see the polar bear exhibit.  We saw many amazing animals, moose and bison, peacocks and owls, lions and tigers, and of course polar bears!

It was a hot day, so by the end we were tired an zooed out.  We came back to our hotel to rest.  Aveen took a nap, his first nap since he was three years old.  Then we went swimming in the hotel pool.

In the evening, we headed out to the Winnipeg Forks where the Assiniboine meets the Red River.  We ate dinner at the Old Spaghetti Factory and then walked around the Forks. 

First impressions of Winnipeg - sprawling prairie city.  Very gentle and friendly people.  Super good service.  Everyone decides we need something better and gives it to us with no extra charge. Bigger room, free juice and toast at breakfast, a replacement dinner.  Do you know how much complaining I would have to do to get that in Ottawa?

On the way back from our hotel, we saw a real arrest go down.  A guy running. Police cars.  The guy being held to the ground being arrested.  That was a bit scary.

Back at the hotel now, we are having some quiet time.

Defying Gravity

This month, I've felt like I've been defying gravity.  For about four years, I tried very hard to reach a certain level at work (an EX-01).  I really wanted it.  Why?  I guess we just all want to move up in the world.  It seems a better direction than down.  And it is hard when your bosses get younger and younger than you. 

I almost got an EX-01 at my last job.  I excelled at my job and was told that I was "almost" ready for the EX-01, and I would get there, no problem.  Next time.  Next job.  It would be mine. 

Except it wasn't.  Over and over again. I worked my hardest and did everything they told me I needed to do to get the job, but it was never good enough.  What they really wanted was for me to change who I was.  Then I realized, after a long time, that they really just wanted someone else.

My last year at that job was a disaster.  A lot of things happened, but the main thing that happened was that I was diagnosed with cancer, and I was really never able to get back "into" work at that job.  I left it to go to my current job. But that proved to be a long hard road too. 

A month ago, something good happened.  My Director asked me to take on an acting EX-01 for my supervisor who is on maternity leave.  I've been doing this for a month, and I've felt like I've been defying gravity (just like the song). Things have been pulling me down constantly since my cancer diagnosis, and having this happen to me is like defying the general downward pulling force. 

I am loving the job so far. Its not just the level.  I have a lot of interesting issues and individuals to interact with, and I am trusted with a lot of responsibility.  And I feel fully engaged, and I feel that my boss (in addition to being older than me) trusts me and likes me the way I am.  And that has made a huge difference to how I feel about things, including myself.

I can't say how much it has meant to me to have something good happen to me.  Because it has felt like, in the last two years, my "good" is the absence of bad.  I have to be grateful for every clear medical test.  Of every cancer-free day.  And I am grateful.  For every minute of it.  And I don't ever forget it.

But some days, it isn't enough.  I need some lucky breaks too.  I need good things to happen.  When I was going through the cancer ordeal, I wondered how I could ever have been anything less than ecstatic with my life when I didn't have cancer.  I vowed to be happy with my life just the way it was if I could just be okay.  

Yet, I haven't been able to do that.  A surprisingly high number of crappy things have happened that are completely unrelated to cancer, and it turns out that those things make me unhappy too.

I have also done an amazingly high number of truly wonderful things too.  I've seen my young children get older and develop into lovely older children and kind people.  I've travelled to amazing places with my family (and a few awesome weekends with friends), I've learned to dance (and loved it!) - just to name a few.

So I'm not saying that there haven't been many special things.  But I guess I just felt like the universe might throw a bit of good luck my way (and not just the absence of bad luck), and it surprised me when that didn't particularly happen and there were still crappy things to deal with.  I know that is life.  We are never "entitled" to anything.  The most worthwhile things come to us only when we work for them.

So, on the one hand, I feel that my current job situation is good luck.  On the other hand, I have worked really hard for it for many years.  The lucky part is that all the stars just lined up in my favour this time, and my Director liked me and decided to take a chance on me.

It is temporary.  Soon enough, I will be back to being bossed around by someone much younger than me.  But I am living in the present and enjoying this moment.  When it is over, maybe there will be some other good luck, not because I'm entitled to it, but because I have earned it.   

I

 

A Matter of Trust

In the last two years, I have had learn to trust.  Not something that comes easily to me, I have learned.

I have never been one to dive in, head first.  No, I’m more one for reading the signs, consulting, testing the waters with my toes, and then slowly lowering myself in, close to the sides so that I can grab on to something quickly if needed.

I’ve had to learn to let go and just swim, sometimes in dark, deep waters, with the sharks, trusting that it will all be okay.  I’ve had to learn to trust.  To have faith.

My ultrasound report came back all clear this week.  Great news!  What I had been waiting for.  And it is great news.  Except, my doctor said it wasn’t the most conclusive test.  To completely rule out a new cancer, which could be an underlying cause for a lab test result, I would have to undergo a more invasive procedure.  So, the question was, do I undergo that test.

My doctor wasn’t sure.  He said that if I were a 65 year old smoker, he would definitely make me do the test.  If I were a 25 year old, he would definitely say I don’t need it. So where do I fit?  I’m kind of in the middle.  I would have thought my history of cancer pushed me to the 65 year old, but he said that didn’t put me at a higher risk for this type of cancer.  Then he realized that I have actually had the other procedure two years ago (to investigate my surgical complications) and even though two years ago seems a long time ago to me, he said it is recent enough that I don’t have to redo that test.

So, he doesn’t know for sure, but he is doing a risk assessment.  I prefer no risk.  However, he reminded me that there are no “no risk” options.  There is always a risk in a procedure, though it may be small.  I guess it is reassuring that he feels that the risk of my actually having that other thing wrong with me is even smaller.

So I have to learn to trust his judgement, and it is hard for me, but I have to do just that.

My husband would say it is a matter of having faith.  He says that he believes certain things even though he may not have the supportive, scientific facts at his fingertips, which is what I would like to have.  “But how can you believe something without evidence?” I ask.  “It is simple, he tells me.  The alternative is intolerable.”

I’ve learned that he is right.  Not trusting, not believing, not having faith is an impossibly difficult and cold way to live.

My future sister-in-law recently told me that she is an atheist.  Twenty years ago, I would have found that to be a reasonable position.  And I don’t want to judge, but I wish I could tell her that life will be very difficult without something to believe in.  It doesn’t have to be God, but everyone needs something.

And where is the evidence that there is no God?

Me, I believe in Deius Ex Machina.  A concept that my high school English teacher explained to us.  God as Machine.  It occurs when you are backed into a corner, and it is not humanly possible to get out of the situation.  In books and movies, the plotline seems to magically get resolved.  Well, I don’t think this is possible only in fiction.   It has happened to me.  Just when I think there is no way out, a hand reaches in and gets me out.  I believe it is the Hand of God.

I still prefer to have scientific facts on hand.  But I believe there is something more.  Sometimes, I have a hard time remembering that.  It is sometimes a real struggle and may always be.  I may never have faith the way that Jaime does.  But I have come a long way, and I have learned to have faith and trust.  Even to trust my doctor.

I asked for a repeat lab test, though, just to have some more evidence.  

 

 

 

 

It's raining again

It’s Monday, and it’s raining today.  Not a warm, spring rain.  It’s cold again, and it’s windy.

The weather suits how I am feeling today.  Tired, and with a feeling of nervousness and dread in the pit of my stomach.  It’s because I have an ultrasound coming up this week.  My doctor ordered it as a result of some abnormal lab results as well as symptoms I mentioned. 

I have been through this before.  In the last two years, I have had 5 scans, 5 ultrasounds, one major surgery, and 4 other procedures.  Only a few of them were disastrous, but that has been enough to make me literally sick when anything to do with the medical system comes up.  When I am scheduled for a test, I can’t sleep, I can’t eat, I can’t concentrate, I can’t enjoy my family or friends or a sunny day, I can’t even watch T.V. or read a book.  My body clenches up and won’t relax until I know the result.

I try to breathe and meditate.  I try to concentrate on my singing bowl.  I try to reflect on the words of Sri Chinmoy.  This helps a little bit.

I am worried about Wednesday’s tests because of the abnormal lab results.  It is still possible that it could be nothing.  It is also possible that it could be cancer.  The same one or another one.  My specialist was not overly concerned that it was the same one, but she said that my family doctor should do a “work-up”.  At first I was reassured, but then I realized that all she was saying was that this is not her area of responsibility and referring me back to my family doctor.  The medical field is as big a bureaucracy as anything else.

It could be things in between.

I don’t what it is, and I am trying not to worry.  My family and friends don’t want me to worry.  My parents worry more when I worry.  But not worrying at moments like this is a skill that I have not yet mastered through this whole ordeal.  How does one not worry in theses situations?  Who doesn’t worry?   I want some names.

I try not to show my worry 90 percent of the time – at work, in front of my kids and parents, in social situations.  It comes out at night when I am briefly alone with Jaime or when I am in bed, unable to sleep.  I am letting it come out here, because this is one of the reasons for my blog.

I prepare for impending disaster.  I abandon my multi-grain bread and almond butter in favour of soft white bread and butter that will go down easier.  I make a strategic plan for taking Ativan.  Do I need it most now or after the test, when I am waiting for a phone call, that could come at any time, with the result?  Do I take an Ativan before the test or do I try to keep my head clear and alert to read the possible signs that the technician may give me?  I don’t think I can do that.  An ultrasound was one of my most traumatic moments.  The one which was looking more closely at what was thought to be a fibroid and then wasn’t.  The technician kept looking and looking and pushing down.  She changed me to another machine.  Then she called a doctor in to have a look.  The doctor looked, nodded at her, but did not say anything to me or even meet my eyes.  He left wordlessly.  I blurted out to the technician, “Is it cancer?  Please tell me what you are seeing.  I am getting so scared.”  She didn’t know how to respond, mumbling something about how we can’t know for sure through imaging.  But I knew that they thought it might be cancer.  I was shaking when I came out of the room.

I’ve had good tests too since then, but it hasn’t all been clear and smooth sailing since either.  So I don’t know what to expect.  My emergency preparedness instincts kick in.  I prepare for the worst. 

I try to let myself hope for the best.

Easter. Road trip. Family. Friends. Secrets

On Easter weekend, I packed up my family and took them on a road trip to Toronto.  Normally, I wouldn’t have thought about going away at Easter since it is a weekend with expectations to eat dinner with parents and design Easter egg hunts and other activities for children.  However, friends invited us to go along with them, and I try to live my life now seizing opportunities when they appear.  It was an opportunity to go on a road trip and spend time with our good friends.

Since we were going in the Toronto-direction, I decided to add on to the trip to give it a special family significance.  Of course, we would visit Jaime’s brother in Toronto who had just gotten engaged.  Congratulate him in person.  But I also thought it would be an opportunity to introduce my kids to the only relatives they have in the country – one of the only few in the whole continent – a distant great aunt and uncle and a third cousin to my children.

We had discovered these relatives in Toronto when I was about twelve years old living in Sydney.  My parents’ friends were all doctors and they mentioned one day that a young locum with the same surname as ours had come to work in the hospital for a few weeks.  My parents figured out that this young locum happened to be the son of my father’s first cousin in Toronto.  We invited T to dinner several times while he was doing his locum in Sydney and got to know him.  That summer, my family did a road trip from Sydney to Toronto to visit T’s parents, my aunt and uncle.  They took us to their cottage (perhaps that is where my love of cottages began) and to Niagara Falls.  It is one of my happiest memories.

About 15 years ago, my parents moved to the Toronto area, where they lived for a few years.  I would visit them from Ottawa and we would get together with my aunt and uncle and my cousin T and his family.  When my parents moved to Ottawa, they kept in touch with my aunt and uncle, and there were a couple of visits, but I hadn’t seen them in about ten years.

So, when my friends asked if we would like to go to Ottawa, I thought it would be the perfect opportunity to go and see my relatives.  I deferred to my parents to make the initial calls, but there seemed to be a lot of reluctance on the part of my relatives to see us. I was finally given T’s wife (K)’s phone number and called her.  She was warm and friendly and confessed that she and T had been separated since last September.  The problem was that my aunt and uncle were terribly upset and wanting to keep it a secret from everyone, including my parents.   

I felt bad about unravelling this family secret – though I later learned that this was just the tip of the iceberg – but I understood.  Indian parents keep secrets.  My parents keep secrets too.  I am sure they hadn’t mentioned to my aunt and uncle about my cancer.  And, there wasn’t any way out of it at that point.  I said we would visit K and her daughter and their new puppies at the very least.  If she could persuade T to come by, so much the better.  We would also go visit my aunt and uncle separately.

On Good Friday, we set off, stopping at Port Hope where K and her daughter I live, en route to Toronto.  T came too, and we all had a lovely visit.  They served up tea and banana bread.  T impressed Aveen with his soccer knowledge, and Aveen and Amrita were both enraptured with the two golden retriever puppies.  The visit flew by and Aveen asked why we had never come to see them before.  “I don’t know,” I honestly said. 

The next stop was the big city.  We met up with our friends, and had a wonderful weekend in Toronto – eating two fabulous dinners together, visiting the amazing new Ripley’s Aquarium, climbing up the CN Tower, and then having Jaime’s brother give us a personalized tour of the ROM (where he is a tour guide).  Before leaving Toronto, we had lunch with Jaime’s brother and his fiancée and found out all about their wedding plans. 

On our way back, we visited my aunt and uncle.  My aunt cried when she saw us.  She had prepared a huge meal though we had agreed on only tea.  We managed only a few bites since we had already had lunch and had eaten so much throughout the weekend.  Aveen and Amrita thought it was hilarious that my aunt is exactly like my mother and my uncle is exactly like my father (even though it is my aunt and father who are the ones who are related).  My aunt cried again as we left.

Back in Ottawa, I e-mailed K to thank her for arranging the visit.  In reply, she sent me a long e-mail, explaining in detail the cause of her separation from T.  It wasn’t what I would have expected – a couple growing apart from each other over the years.  No, it was much more dramatic and sad, involving their daughter and terrible things that can happen how those things tear apart a family.

There was something pulling me to visit my relatives in Toronto.  I wanted something.  I wanted to give my kids a bigger family.  In the back of my head, I feel that if anything should happen to me, I want Aveen and Amrita to have as big a support network of family and friends possible.  However, I learned that there may have been another reason that I needed to visit.  It is I who may be able to give some help and support to this family.  It is they who need a big support network right now.

Or maybe it is that we both need each other.  We all have our secrets.  We all have our sadness.  We can support and lean on each other, if only we will talk to each other.        

 

 

 

 

It's time to begin

A couple of friends took me to lunch the other day and said that I had sounded so down in my last posts that they were worried about me.

I felt a bit bad, because I hadn't meant to sound down, and then I wondered if I have been, and why.

Well, I guess there is the usual.  It has been a long, brutal winter for everyone, and I have had lots of colds, and so has my family.  Work has been uninspiring.  I have been on my usual "cancer watch", which is exhausting.  While I look forward to spring, in the back of my head, I am worried about redoing my mammogram, which I will have to do, for fear that it will lead to another biopsy.  I have other upcoming appointments too, and possibly tests. In a way, I hope to have some tests, otherwise I don't feel reassured about my health.

I think something that has been making me a bit sad is a problem with a friend, and it has been filling my heart with anguish.

A bright part of my winter was a weekend trip to Montebello with my family and our great friends, where our activities and food and our long conversations warmed us up.  And helping Amrita play the piano.  She is practicing for the her grade 1 exam as well as a duet she will be playing at the Kiwanis Festival.  Her teacher is great but intense and it has meant a lot of work for Amrita and her home coach (me!).  It is forcing me to rediscover playing the piano, and just like my dance class, it forces my brain to focus in a creative way and helps me to be in the present. 

Also, I think I have taken two potential positive steps this winter.

The first is agreeing to participate in the psychological, clinical study at the hospital. I went for an interview and I am eligible to participate.  I am not sure when it will begin - sometime in the spring or fall, if they can get enough participants.  It is going to be a bit of a pain - I will have to take 2 hours off from work every week (at a time when our sick leave is being trimmed back to virtually nothing) and I will have to take a taxi back and forth to the hospital.  The taxi will make me nauseaus, and the 7th floor of the General isn't my favourite place in the world.  But I am hoping that the interventions they are testing may help me a little to manage my fear of cancer recurrence.  And what I am hoping even more is that I will meet someone - someone who feels like I do.  Someone I can talk to.  Someone I can be friends with.  

The second is that I think that, after several false starts, I have succeeded in starting on my novel.  For all my life, all I have ever known is that I wanted to be a writer, and I wanted to write a novel.  I wrote and wrote so many things, but never my novel.  And it is time to begin.  I found an article about writing by Annie Dilliard, from her book The Writing Life, and it filled me with inspiration.  She said to write like you are dying.  I can do that.  And she said to write something that someone who is dying would want to read if that is the last thing they could read.  I don't have any grand subjects to write about.  The novel I have in my heart is all about love and loss and redemption.  It may not be what everyone who is dying would want to read, but it will have to be something that I would want to read, and it is up to me to write it. 

S, it is time for me to begin.  To begin another part of my life's work, and to hope that the spring will come.

P.S.  Thank you to my friends who reached out and made me leave my desk to have lunch!  I think it pushed me to examine of things and to start writing!  Grateful. 

A Little Help Is On Its Way

Yesterday, my psychologist called me. We hadn't talked in many months. Despite initially thinking that I had an anxiety order, she seems to now think my reactions to things are normal - just that there are some challenging things to react to. It was nice to hear her kind voice.

She asked me if I would be interested in participating in research - a study on the fear of recurrence and other common feelings - like anger, depression, anxiety, sadness - in cancer patients/survivors.

I said I am interested in learning more. I think it involves group work once a week during work. I am not sure that will be possible to square with work. But for now, while I wait for a call from the researcher, it is in the realm of possibility. It is help sent in my direction from the universe.

Don't Google It

It's the middle of the afternoon.  You are done all your work.  All your important work anyway.  You are waiting for decisions, and there is not much progress you can make until you get them.  You've made some headway on your correspondence, but correspondence can be mind-numbing at best, if not soul squashing.  You have nobody to talk to - because everyone around is busy and deadly quiet.  You've already read the Globe and Mail. 

Something triggers you.

What's a girl to do?

I know I shouldn't. I usually don't. But sometimes I just can't help it and I google the kind of cancer I had. A cancer mentor had warned me against it. The Internet is not your friend, she had said firmly.

I know, but sometimes, the Internet is the only friend I have. 

I feel that I need to know more about my cancer. I feel like Dr. H kept it very high level - on a need to know basis, thinking I didn't need to know very much. I know I shouldn't know too much.

Nonetheless, sometimes my fingers have a will of their own.

And what I read scares the hell out of me! I see that my diagnosis is so rare that there is very little information about it.  The few academic papers warn against accepting it at face value.

I can't even write the other things they say about it. 

I feel like I am watching a scary movie by myself but just can't make myself stop.

Someone finally talks to me and I snap out of it.

Walking home, I know that Dr. H didn't just take it at face value.  She either removed or biopsied every possible organ and lymph node that she could.

But she can't give me what I want, which is certainty.  I know that there is no certainty, so I just have to make every moment count.

Sometimes it is a lot of pressure to try to make every moment count - especially when so much is not in my control.  I can only control how I respond.  I can only control how I am.

But a little encouragement from the universe for me and my family and friends would, of course, help!

Desiderata

I came across the poem Desiderata by Max Ehrmann this week.  I took comfort in reading it, feeling that I could relate to each line, and it encouraged me to be brave.  

Because I was feeling kinda blue this week, tearing myself up over issues both big and small, both existential and mundane.

Will the cancer come back?  When will it come back?  What is my body trying to tell me now?  How much time do I have left with my children?  With my parents?  Why do we always have to do the crappy shift in the carpool?  Why wasn’t I included?  I am going to be (5 minutes) late for work.  What did it mean that Aveen and I almost got run over by a car, separately, at opposite ends of centretown, at the exact same moment?

It’s been a week of minor illnesses, big drudgeries, little disappointments, and hurts.

And it always takes me back to my fears.  Despite the lovely Winter Solstice yoga class where I wrote, on a piece of paper, what I wanted to let go of in 2015 and watched “fear” go up in flames.  Where I lit a candle, so that I could see in the darkness.  Where a stranger hugged me.  

But it isn’t so easy as that.  

This week, I found myself back in the darkness.  

The poem made me see that, most of the time, my fears are indeed born of fatigue and loneliness.  I am often fatigued because of chronic sleeping problems, exacerbated by many things, big and small.  And this week, I was lonely.  I felt left out and alone.  I felt Ottawa to be a cold and lonely place.  I was longing for warmth, both in the weather and in humanity.  I wanted a proverbial hug.  

Today.  Well, it is warmer today.  I feel a bit less lonely.  And I am a bit less afraid, though I know it will get cold again.

But whatever happens, no doubt, the universe will unfold as it should.    

Desiderata - Words for Life

by Max Ehrmann

Go placidly amid the noise and haste,
and remember what peace there may be in silence.
As far as possible without surrender
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even the dull and the ignorant;
they too have their story.

Avoid loud and aggressive persons,
they are vexations to the spirit.
If you compare yourself with others,
you may become vain and bitter;
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.

Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs;
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals;
and everywhere life is full of heroism.

Be yourself.
Especially, do not feign affection.
Neither be cynical about love;
for in the face of all aridity and disenchantment
it is as perennial as the grass.

Take kindly the counsel of the years, 

gracefully surrendering the things of youth. 

Nurture strength of spirit to shield you in sudden misfortune.

But do not distress yourself with dark imaginings. 

Many fears are born of fatigue and loneliness. 

Beyond a wholesome discipline, be gentle with yourself. 

You are a child of the universe, 

no less than the trees and the stars; 

you have a right to be here. 

And whether or not it is clear to you, 

no doubt the universe is unfolding as it should. 

Therefore be at peace with God, 

whatever you conceive Him to be, 

and whatever your labors and aspirations, 

in the noisy confusion of life keep peace with your soul. 

With all its sham, drudgery, and broken dreams, 

it is still a beautiful world. 

Be cheerful. 

Strive to be happy.