Things are righting themselves

That is what my specialist said at my appointment yesterday. 

"But I still have pain.  And this.  And the other thing."

"Yes," she said.  "And things will never be the same.  I'm sorry it is this way.  I've damaged you.  I damaged you to fix you.  We don't know what will happen in the future.  But you shouldn't live in fear."

It is hard to face death.  It's just really hard.  What makes it somewhat easier is that you don't know just when it will come, and it is so hard to fathom that you just don't understand it fully.

For the moment, it is no longer my job to face death.  I don't have to think about dying anymore. 

Exactly one year ago this week, my body gave me the first sign that something was wrong.  And I ignored it for about six weeks.  Then I went to my doctor.  He ordered a test.  The test showed exactly what was wrong.  Except, my test result was never sent to my doctor so I thought everything was fine.  Even though I knew it wasn't.  And I did all kinds of things that, rightfully, I should not have been able to do.  I wrote an MC which was the culmination of years of work.  I hiked through the hills of Vermont.  I taught a bunch of kids dance moves to Jai Ho at Amrita's birthday party.  I lived. 

But I avoided going to the doctor.  I even didn't get the flu shot because I was avoiding going to the doctor.  And then, at Christmas time, my body screamed at me,  "ENOUGH," and sent me to the Emergency Room. 

Another six months, and it is over.  Things are righting themselves.  In spite of the missed test result and my avoidance and denial, I was lucky.  I went to the hospital early enough for something to be done.

I don't know what will happen in the future but it is over now.  I have to live again.  But I have some important challenges ahead of me.

How do I live without fear?

How do I put distance between me and this thing that happened?

How do I listen to my body's signs but not over-react to everything?

How do I live a meaningful life and make a difference?

How do I ease the pain of what my parents went through?
How do I thank people?  For taking care of my children, for holding my hand through my darkest times, for keeping me company when I didn't have anything to worry about but was worrying anyway or was simply bored or lonely, for sending me cookies or meditations or flowers or food or books or e-mails.

How do I thank my doctors for, literally, saving my life? 

How do I thank my doctor friends who supplemented information and advice - who became my doctors as well as being my friends?  (Doctor friends are really handy!) 

How do I begin to describe what Jaime does for me everyday and what he has been through and what he means to me?

I don't know.  All I know is to get up in the morning.  And hope that I will know what to do from there. 

Up in the Air

Things are still a bit up in the air.

No calls from my doctor about my kidney scan test.  I stuck so close to my phone all week that it reminded me of my teenage years waiting for the phone to ring.  Of course, now I have an iPhone, so waiting by the phone is not quite so restrictive as it used to be in those days.  But it does make me wonder why I haven't received a call.  They told me at the hospital that my results would be ready later that afternoon.  That was Monday.  So, where are my doctors??  Heavens knows I have enough of them.   

What else is up in the air?

I am supposed to go on language training starting on July 8.  But only if they can form a group of more than one.  They don't know yet for sure.

My job is a bit up in the air right now too.

Summer vacation is up in the air.  Depends on language training and my exam date.  And my kidney scan test results!!

So big things are up in the air.  And little things too.  Like whether Amrita and I will go to see any games at Aveen's soccer tournament on the weekend (depends on how much it rains). Whether Sunday will be dominated by soccer too (depends on how well his team does).  What hours I will work next week (depends on how my appointments go) - it is getting harder to work such limited hours.

I guess things are always up in the air to a certain extent whether or not they are health-related things like I am going through or not.  I used to like to pin things down.  I liked commitment.  I liked (like) certainty.  Well, life just doesn't work out that way.  You can't plan on rain or winning or losing.  (Who would have thought that soccer holds so many life lessons?)  You sometimes just have to go along on the winding path and see where it takes you. 

I'm trying to do that.  I'm learning.  It's not my nature but I'm trying.  There are advantages to some uncertainty too.  It leaves me room to change my mind and my plans, because sometimes I feel differently.  It leaves room for spontaneity and adventure. 

Of course, I don't want to turn into a complete commitment-phobe either.  I sometimes worry that I am being too vague with people at times.  Well, one day, I can explain to them why.  For now, I can deal with the uncertainty in my life by being a little mysterious myself. 

I can almost see the Finish Line

The Finish Line is close, I can see it.  And just past it is a beautiful weekend in Chateau Montebello.  It will be hot and sunny.  We will swim in the outdoor poor all day, eat barbeque in the early evening.  Then we will play mini-golf as the sun wanes.  We will eat a sumptuous breakfast of berries that we've never even heard of.  Maybe I'll get a massage.  Maybe Amrita will try horse back riding.  Then we will fall into bed and read Harriet the Spy.

But I'm not there yet.  I am so close but there are still turns and detours just before, and I don't know if I will get re-routed.  There have been many such detours on the long marathon I've been running for the past 6 months.  The marathon itself was a big detour from the path I was on before last December.  Even along the detour, there were more unexpected twists and turns. 

I'm almost back on the track - a different track, mind you, then the one I was on before.  Like all paths, this was has its pluses and minuses.  Some pluses include:  a better appreciation of life and my family and friends and even work, a more health conscious life-style, the desire to live a more meaningful life.  A big minus is the fear and possibility of recurrence.

But before I am completely back on track, I have to get the results of my kidney function test.  I haven't got a call from my doctor yet.  I got a call so quickly after last week's CT scan that I have been expecting the same timeframe.  I know that I will know by June 28 at the latest since I am seeing my specialist at that time, but it would be nice to know before. I'd sort of like a heads-up if I have to get the stent re-inserted on June 28 (since my appointment is at the same location where I got my stent removed).  Especially since I did book a room at Chateau Montebello for June 29-July 1.  And I have to cancel by June 26.

I used to be such a planner.  I planned our trip to Paris one year in advance - the plane tickets, the apartment, everything. Now I can't even plan anything a day in advance.  And the cancellation policy is the key feature I look at.

There have been a lot of hurdles to get over in this marathon.  I hope that June 28 will see me at the Finish Line.

Do I dare to eat a peach? (Line 123)

My first CT scan came back clear, which makes me very happy and relieved!  They don't know what is causing the slight, coming and going pain that I have but probably scar tissue.

One more test to do - to check kidney function - on Monday.

When do I dare to book a trip?  I am trying to be patient.  I love, more than anything, to travel and to plan trips.  And my family loves the trips I plan. Aveen and Amrita are expecting one (sort of, though they know that they might not have one this year), and have requested it to be a warmer trip than Tofino was last year.

The Love Song of J. Alfred Prufrock  T.S. Eliot (1888–1965). LET us go then, you and I,
When the evening is spread out against the sky
Like a patient etherized upon a table;
Let us go, through certain half-deserted streets,
The muttering retreats	5
Of restless nights in one-night cheap hotels
And sawdust restaurants with oyster-shells:
Streets that follow like a tedious argument
Of insidious intent
To lead you to an overwhelming question….	10
Oh, do not ask, “What is it?”
Let us go and make our visit.
In the room the women come and go
Talking of Michelangelo.
The yellow fog that rubs its back upon the window-panes,	15
The yellow smoke that rubs its muzzle on the window-panes
Licked its tongue into the corners of the evening,
Lingered upon the pools that stand in drains,
Let fall upon its back the soot that falls from chimneys,
Slipped by the terrace, made a sudden leap,	20
And seeing that it was a soft October night,
Curled once about the house, and fell asleep.
And indeed there will be time
For the yellow smoke that slides along the street,
Rubbing its back upon the window panes;	25
There will be time, there will be time
To prepare a face to meet the faces that you meet;
There will be time to murder and create,
And time for all the works and days of hands
That lift and drop a question on your plate;	30
Time for you and time for me,
And time yet for a hundred indecisions,
And for a hundred visions and revisions,
Before the taking of a toast and tea.
In the room the women come and go	35
Talking of Michelangelo.
And indeed there will be time
To wonder, “Do I dare?” and, “Do I dare?”
Time to turn back and descend the stair,
With a bald spot in the middle of my hair—	40
(They will say: “How his hair is growing thin!”)
My morning coat, my collar mounting firmly to the chin,
My necktie rich and modest, but asserted by a simple pin—
(They will say: “But how his arms and legs are thin!”)
Do I dare	45
Disturb the universe?
In a minute there is time
For decisions and revisions which a minute will reverse.
For I have known them all already, known them all:
Have known the evenings, mornings, afternoons,	50
I have measured out my life with coffee spoons;
I know the voices dying with a dying fall
Beneath the music from a farther room.
So how should I presume?
And I have known the eyes already, known them all—	55
The eyes that fix you in a formulated phrase,
And when I am formulated, sprawling on a pin,
When I am pinned and wriggling on the wall,
Then how should I begin
To spit out all the butt-ends of my days and ways?	60
And how should I presume?
And I have known the arms already, known them all—
Arms that are braceleted and white and bare
(But in the lamplight, downed with light brown hair!)
Is it perfume from a dress	65
That makes me so digress?
Arms that lie along a table, or wrap about a shawl.
And should I then presume?
And how should I begin? .      .      .      .      .      .      .      .
Shall I say, I have gone at dusk through narrow streets	70
And watched the smoke that rises from the pipes
Of lonely men in shirt-sleeves, leaning out of windows?…
I should have been a pair of ragged claws
Scuttling across the floors of silent seas. .      .      .      .      .      .      .      .
And the afternoon, the evening, sleeps so peacefully!	75
Smoothed by long fingers,
Asleep … tired … or it malingers,
Stretched on the floor, here beside you and me.
Should I, after tea and cakes and ices,
Have the strength to force the moment to its crisis?	80
But though I have wept and fasted, wept and prayed,
Though I have seen my head (grown slightly bald) brought in upon a platter,
I am no prophet—and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,	85
And in short, I was afraid.
And would it have been worth it, after all,
After the cups, the marmalade, the tea,
Among the porcelain, among some talk of you and me,
Would it have been worth while,	90
To have bitten off the matter with a smile,
To have squeezed the universe into a ball
To roll it toward some overwhelming question,
To say: “I am Lazarus, come from the dead,
Come back to tell you all, I shall tell you all”—	95
If one, settling a pillow by her head,
Should say: “That is not what I meant at all;
That is not it, at all.”
And would it have been worth it, after all,
Would it have been worth while,	100
After the sunsets and the dooryards and the sprinkled streets,
After the novels, after the teacups, after the skirts that trail along the floor—
And this, and so much more?—
It is impossible to say just what I mean!
But as if a magic lantern threw the nerves in patterns on a screen:	105
Would it have been worth while
If one, settling a pillow or throwing off a shawl,
And turning toward the window, should say:
“That is not it at all,
That is not what I meant, at all.” .      .      .      .      .      .      .      .	110
No! I am not Prince Hamlet, nor was meant to be;
Am an attendant lord, one that will do
To swell a progress, start a scene or two,
Advise the prince; no doubt, an easy tool,
Deferential, glad to be of use,	115
Politic, cautious, and meticulous;
Full of high sentence, but a bit obtuse;
At times, indeed, almost ridiculous—
Almost, at times, the Fool.
I grow old … I grow old …	120
I shall wear the bottoms of my trousers rolled.
Shall I part my hair behind? Do I dare to eat a peach?
I shall wear white flannel trousers, and walk upon the beach.
I have heard the mermaids singing, each to each.
I do not think that they will sing to me.	125
I have seen them riding seaward on the waves
Combing the white hair of the waves blown back
When the wind blows the water white and black.
We have lingered in the chambers of the sea
By sea-girls wreathed with seaweed red and brown	130
Till human voices wake us, and we drown.

A light-hearted, quirky romantic comedy about mental illness

I guess I can still be distracted by some movies and t.v. shows. 

Over the last three nights, Jaime and I watched Silver Linings Playbook.  It was a great movie!  A light-hearted, quirky romantic comedy about mental illness.  Jennifer Lawrence deserved her Oscar!  The other three main actors were also awesome.  It inspires you to learn to dance. 

We are also watching episodes of Season 4 of The Good Wife as they seem to get randomly taped on our PVR.  And Madmen - but there are only two episodes left in the season.

But that's it.  I wonder what else could get me hooked.... 

The Waiting Game

Another theme that has dominated my life over the last six months is waiting.  Waiting in the ER.  Waiting for a test.  Waiting for a test result.  Waiting to see a doctor.  Waiting to see another doctor.  Waiting for surgery.  Waiting to be released. Waiting for lab results. 

You would think that once those lab results were in and things were good (though in the universe of the bad) that everything would be over and I would just get on with my life.

No, that isn't how this story is going. 

There was a complication, and no one could exactly tell me what it was or what had to be done or what would happen.  All that I knew was that there would be more waiting.  Waiting to have my kidney drained.  Waiting to have my nephroscapy tube inserted, then removed.  Waiting to have my stent inserted, then removed.  Waiting to see how things would hold up.

And all the while, a voice whispers inside of me, "Is this cancer?"

And then I have more pain.  And I wait to go to the doctor.  And then my doctor waits to see if the pain will go away.  And then my doctor orders a CT. 

And I wait for results.  And the same voice whispers inside of me, "Is this cancer?"

The waiting is difficult and draining.   And what I have learned about myself is that, sadly, I have very little ability to cope.  Did I miss that day in school where we learned coping mechanisms?  Was it part of the school curriculum in Sydney, Nova Scotia?

Alas, no.  It is only part of the curriculum of life.  And it is an apprenticeship.  You learn by doing.  Baptism by fire.

Through all this waiting, what I really want is someone to hold my hand through it, all the time.  And I am lucky, because I do have so many people to hold my hand.  Jaime and/or my parents drive me to my appointments and wait for my procedures to be done and take me home. I have friends that visit me and walk with me and e-mail me.  Friends that lend me books and send me pictures and meditations. 

And I am so very grateful.  Because not everyone has this.  While I was in the nursing station this morning, waiting for my CT scan, the nurse was talking to another patient who would be having a different procedure.  The nurse told her that she would need someone to drive her home and stay with her overnight.  "Oh, darn," she said, her voice crestfallen.  She didn't have someone to drive her home and stay with her overnight.  I don't have to worry about that.

But sometimes, despite all I have, I still feel alone and scared.  And I realized - and Jaime told me - that I need to be there for myself.  And I have to be enough for me.  And that is the hardest thing to learn. 

It is hard when your life is so full - full of work and important responsibilities and activities and social engagements and there is no time to stop.  What do you do when you are forced to stop? 

It's good to have a plan.  My son has a plan.  He would play games on his DS. 

Why did my plan not work out?  Why has my love of reading abandoned me?

I have discovered, fortunately, that there is one survival skill that is in me yet.  I have always wanted to write.  I always felt that I am meant to write.  And throughout this, that feeling has not abandoned me.  At first, I only wrote out pleas to God.  Then I wrote e-mails.  Now I am writing this blog.  Next, I hope I will start a short story.  Or a novel.  I feel that I can do that, no matter what happens in my own story.  I can do that while I wait.

Waiting is part of life.  Via rail may be right that one should make the journey the destination.   There will be a lot more waiting for me.  I will be able to either finish my novel or meet Godot.

Post-Script to A Quiet Saturday

After dinner, we sent to the magazine store Brittons.  We encouraged Amrita to get an Archie comic.  All her friends are hooked on them and we'd like to get her hooked on something to help her reading.

I got the summer fiction edition of the New Yorker, because there is a story by Jhumpa Lahiri, whom I love.  The story is called Brotherly Love and is an excerpt from a novel that will be published in the fall.  I thought I could see if I may like the book - that is, if I can manage enough concentration to read the story.

The story is about two brothers in Calcutta during the Naxalite era.  The Naxalites were a militant communist party in India, and in the 1970s, they tried to recruit young men to their party.  I have a vague memory of them. 

It is 1977 and my mother takes me to Calcutta by herself.  I am 7 years old and I miss my father.  I don't know who the Naxals are except one day, they come knocking at our door - my grandparents' house with whom we are staying.  My grandparents are panicking and my memory is that are hiding my uncle, who was in his twenties at the time, in the linen closet that was behind the main bathroom in the house. 

Was I in there with him?  Where was I exactly?  I don't remember.  All I remember is that my grandparents were able to convince the Naxals that there were no young men in the house.  I'm glad that my father wasn't there.

Was I scared? I don't remember.  Just that it happened.  And what happened the next day?  I don't remember anything else in particular, except that every day was hot and languid, and we only had power every other three hours.  And that the mangoes at teatime were better than any you could taste here.  And you couldn't go out anywhere until 5:00, when we would go to my rich aunt's house by the lake, and they would order sweets and yogurt and drinks like Fanta and Thumbs Up and Campa Cola, and sometimes my mother would let me have some of it.  And they had a white fluffy dog named Don that I loved to play with.

Otherwise, the days were long and boring.  I missed my father and asked my grandfather everyday if I could call him.  But it was too expensive in those days.

I loved being with my grandmother, though.  Dida.  I followed her around everywhere and napped at her side on the floor in the afternoons.  And I cried and cried every time we left her to go back home. Every time, it would be in the monsoon season that we were leaving and the roads would be flooded making it impossible to get to the airport.  My rich aunt's husband, my uncle, would take us in his Ambassador car, driven by the driver who was nearly blind.  And he would get out of the car, directing traffic himself to help us get through the traffic jam.

We never missed out flight, though sometimes I wanted to.  But then I was glad to be reunited with my father.

Just these vague memories looking at the New Yorker story.  We all read our magazines together before bedtime.  Amrita did a great job reading her Archie comic.

A Quiet Saturday

There is something about a cloudy and gray Saturday, with a chance of rain, that slows everything down.  Maybe it is that or a day with no soccer tournament that suddenly expands time.

Everyone was tired today.  Even Amrita slept late.  I was awake first.  A swimming lesson, groceries, gardening, and a vegetable curry with saffron rice for dinner.  And it is only 6:30.  Time used to go so fast, but it seems to have slowed down for me. 

Fear is Enemy Number 1

I have two scans coming up, one on June 10th to investigate the pain I've been having and another on June 17th to look at my kidney function.  And I am filled with fear of what they will find.

Fear has dominated my life for the last six months, and I realize it is my worst enemy.  What have I been scared of?  Getting bad news, having to tell my parents and children the bad news, chemotherapy, losing my hair, being too tired to keep up with my kids, nausea and vomiting, having my kids see me going through treatment, not being able to make my kids any promises, a nephroscapy bag, not knowing if I will be able to see my children grow up, my parents seeing me die, Jaime going through a loss like this for a second time, Jaime being left alone to raise the kids.

Despite the initial bad news, most of these worst case scenarios have not happened and may never happen.  I mean, I realize I will die someday, but it could well be a long time from now and from an entirely unrelated cause.   

Yet, I have been all but paralyzed with fear.  So gripped have I been, that I have not been able to allow myself the simple pleasure of reading a book.   I barely have any interest in anything - t.v. shows, food, my kids' homework.  It was the worst after the surgery, especially after my family doctor had that little chat with me.  Things have been better, of course, but I still basically live in that little fog of fear.

Why?  Why do I insist on keeping myself there?  I guess I feel like the fog protects me somehow.  If I am already there, and "on hold" from life, I have less to lose if things go wrong.  When I received the initial bad news in the hospital, an environment where bad news is kind of normal, I was so de-sensitized, I was barely more than a bit bummed out.  Had I been with my family and friends, say at a picnic, or at work, when receiving the same news, I would have been devastated, knocked to the ground.

So I stay close to the ground.

The thing is, and I know it, that this way, while I may be prepared for another blow, for the other shoe to drop, I am living my life low, on the ground, continuously, when I don't have to.  And being there will never prepare me anyway.  I will just have lost everything.  And I will have squandered the rare gift of a Stage 1a cancer, which should be used to make life better and more meaningful.

But fear is still natural and normal.  And I am convinced that I am not the only one to react with fear in this type of situation (although there are also many others who react to much worse better than I have).  Natural and normal though it might be, fear does not help.  We all have to get through what we have to get through, and we can chose to do it fearfully or courageously.

So, I know fear has to be conquered.  But how?  One way or the other, I have survived up to now, more or less intact.  This is what helps me:

- Jaime's unfailing faith that I will be all right.  (The psychologist said men react this way and do I find this annoying? Sometimes, yes, but had he ever faltered in his faith, I would have fallen apart.)

- My parents being brave and courageous and not showing me their fear.

- My friends who keep me company during the day when I am alone.

- My friends who can't keep me company during the day but e-mail me throughout the day, or whenever they can.

- E-mailing my friends and telling them how I feel.

- My kids' friends' parents (who are my friends too - the very best) who invite my kids to so many things so they can have fun and be taken care of even with a parent in the hospital.

- Connecting with cancer survivors my age who are so generous in sharing their experience and giving me tips on  how to get through this.

- Meditating with my singing bowl.  I have little concentration but concentrating on the vibrations of a beautiful singing bowl greatly helps.

- Prayer.  I thought I wasn't religious but after you get used to doing it, saying a prayer over and over again starts to feel natural.  I also like going to the Hindu temple. It's hard to find solace the first time if it feels unnatural, but the key is to do it over and over again.  Then you know there is comfort there.

- (Since I am being honest), a small dose of Ativan, which gives me some relief from anxiety and makes me able to sleep at night.  I think the key to controlling dependence is to lower the dose when you don't need it as much, so that you don't have to keep increasing it.

- Eating salad and Indian food (see blog below) which is yummy and makes me think I am doing my body good.  And Camino chocolate.

- Walks.

- Planting flowers.

- Writing, because, sometimes, you just are all on your own, and you have to have something you can do on your own.

- My beautiful, resilient kids who tell me things as they see them.  "You should probably get back to work full time.  You look fine to me."

Though we sometimes don't tell them everything, kids know the truth.

Juicing

According to my research, the latest trend among celebrity cancer survivors, like Lisa Ray and Cynthia Nixon, is juicing - turning green vegetables into a juice and drinking that.  And, of course, I want to do it like the celebrities do.

I've been thinking a lot about the merits of juicing.  It seems to me that it should be better to just eat the vegetables, because then you would get the fibre.  I can, however, see that it would be better to drink a vegetable juice than a coffee or lemonade or fruit juice.  Also, it could help to increase your vegetable intake, if you have a vegetable juice in addition to the normal vegetables you eat.

But I was curious how it would taste.  Since I'm not in Toronto where the trendy juice bars seem to be, I went to Booster Juice.  They only had one pure vegetable juice - spinach, carrots, celery, and parsley.  One size - $5.37.  And, well, it tasted better than I thought - but I had low expectations.  It tasted a lot like if you put a straw into a stick of celery and drink.  The taste of celery dominated.  It was okay but not great.  I only drink about a third of it as I didn't want to make myself ill.  It probably wouldn't have, but I didn't want to take any chances.

I would really like to develop a taste for it and be like Lisa Ray and be able to say it is my secret weapon to good health and beautiful skin.  Maybe I can develop a taste for it slowly, maybe going to Booster Juice with friends whom I could split the juice with.

In the meantime, I am going to stick with salads.  My new thing is making really big, over-the-top salads with local micro-greens and fruit and herbs.  And they taste so much better than the juice!  But the chopping takes a long time, and though I make large portions to save and eat throughout the day, they are probably losing nutrients since they are not freshly cut.

Also, I am driving my family crazy because the only food I seem to like to eat is chicken curry.  It is my comfort food - the Indian version of chicken noodle soup.  It tastes yummy and I feel like it has the magic Ayurvedic ingredients like turmeric, ginger, and cinnamon.  Plus, when my mother asked my specialist what I should eat, she said Indian food. 

I could eat it every day - with some breaks for various versions of spaghetti pomodoro - but how long do I have before my family kills me in my sleep?