I'm nobody! Who are you?
Are you – Nobody – too?
Then there's a pair of us?
Don't tell! they'd advertise – you know!
How dreary – to be – Somebody!
How public – like a Frog –
To tell one's name – the livelong June –
To an admiring Bog! -Emily Dickinson
It seems, in your twenties, that life stretches out long and
wide ahead of you and mortality is something that happens to other people. You
imagine your circle of friends will always expand. You cannot know how many
friends will drift away; how many connections will be lost.
But if you are very lucky, there are a handful of people who
are still with you at the other end of life. Friendship is picked up as if you’d
seen each other yesterday no matter how far away you travel in distance or
We were in our twenties in these pictures. All of us were
married and Heather & Wendy’s children were young. I have a lot of memories of their kids.
Dave, Wendy’s younger son would only eat Zoodles and Laura
Secord’s Chocolate Pudding, except when at his daycare lady’s house. There, he’d
tow the line. When I lived in Toronto,
a Tim Horton’s near Wendy’s house became her refuge and she wrote me letters
from there. A brief escape from job, housework and mothering duties.
In one letter, she described coming home exhausted and
plunking into an armchair with a good book, and going quietly on strike. After
a long while, her husband Bill (and the boys) got the idea that Mom was not
cooking and Bill went for takeout. Good guy that he is, he also volunteered to
put Dave to bed – and in the process, handed Dave to Wendy for just a moment while
he grabbed a diaper. The very moment that Dave decided his bowels needed to
move. “Remember ‘Leave it to Beaver,’ Wendy said, ‘it was nothing like that.”
And there was the time Wendy and Dave were in the car and “I
Want to Know What Love is” came on the radio. Dave was very young. He turned to Wendy in
disbelief and said, “Imagine not
knowing what love is!”
Dave is a crusty, quick-witted young man these days - but that same heart is still firmly embedded in him.
I lived with Heather on Kline Street and was left in charge of
baby Phil (Heather’s first break from the baby). I walked him ‘round and ‘round
under a ceiling light because it was the only thing fascinating enough to stop
him crying. Until I discovered that he liked blueberry yogurt. I was pretty
smug about my inventive baby tending until the next day, when he began to
eliminate the blueberries at an alarming rate and Heather pointed out to me
that you just don’t feed blueberries to a baby who is just starting to eat soft
But he lived. Today he's a police officer - and runs his own Karate school.
I also remember sewing a Victorian nightgown for Heather’s
daughter, Tracey, who was so excited she put it on and ran out into the street
at high noon to show her friends. She was out the door so fast, we didn't even realize she was gone.
Another time, she was misbehaving
and sent to her room – and stomped up the stairs calling out in a long-suffering voice, “I wish I had a kind mother,” while Heather & I sat
in the kitchen cracking up over her theatrics.
Tracey grew up to have a singing voice that could break your heart. And she's still theatrical, funny and lightening quick with a one-liner.
There are other stories I could tell you. Blurry memories of
a lot of parties. This was the early
70s. Marriages came together and fell apart. There were heartbreaks, financial
disasters, losses and gains of every kind. There were bottles of gin and hot
knives and the kinds of scrapes you get into that make a great story a long time
after you get out of them. There were
men behaving well – and men behaving badly. It didn’t take long to figure out
that when push came to shove – it was our women friends who would show up and
help stick us back together again.
And here it is – 40 years, give or take, since we were the
girls in those pictures. After hundreds of friends have come and gone, after
marriages have broken, these are the people who are right next to me, walking the far end of the
trail. Still showing up to help stick the pieces back together again.
One of my favorite authors, Buddhist, Pema Chodron, points
out that when catastrophe comes to us, we have a choice. We can close up tight
in defense or we can remain open and use the experience to see the connection
between our pain and trouble and the pain and trouble of others.Seeing the haunted eyes of third world
children who have lost their families to war or disease – those old, old eyes
looking out of painfully young faces that regularly appear on my television in
NGO ads, sometimes I resist the urge to wince away.
And many times, since I
have begun this blog, I receive letters that do not allow me to turn away,
indulging in the notion that I am alone in my trouble.
I am grateful to those who share their experiences with me.
And I find myself recalling a passage about “Bodhichitta” (noble or awakened
heart) from Chodron’s, When Things Fall
“It is said that in difficult times, it is only bodhichitta
that heals. When inspiration has become hidden, when we feel ready to give up,
this is the time when healing can be found in the tenderness of pain itself.
This is the time to touch the genuine heart of bodhichitta. In the midst of
loneliness, in the midst of fear, in the middle of feeling misunderstood and
rejected is the heartbeat of all things, the genuine heart of sadness.”
I received this letter to day and am posting it with Dayle’s
permission.It touched me very much.
Thank you, Dayle.
“…I just read your
most recent piece and I understand your pain in trying to decide what treatment
if any you should take. My husband was diagnosed with Myelofibrosis ( a rare
blood disorder/pre-leukemia) 2 years ago. We were told the only treatment is a
stem cell transplant (not a guaranteed cure). He chose not to do it due to
having to move to another city for 6-8 weeks ( 3 hrs from home) and he has no
family match so they would have to go to the international registry. The side
effects are bad as you listed some in your brain radiation side effects.
…..I could feel your anguish in trying to decide if you were
going to go ahead with the treatment. I do not agree with my husband's decision
not to get the treatment ( I do understand)...but I do respect that it is his
choice what to do with his medical treatment. He has to do what feels right for
him. We have 2 sons (22 & 25) and they too are allowing their Dad to make
his decisions knowing full well that those decisions could take him away from
them sooner than any of us want.
SO what all this rambling is hopefully telling you is that
no matter what decisions you make , those that love you will understand and
support you always. I have found through this journey with my husband ,a kinship with fellow cancer patients and
their families, as it is a very strange world we have all entered and has
changed us all forever.
I think of you often and hope for strength for you!
I am sitting on the couch with a grey and white plaid
blanket over my bare knees. My fingernails are painted apple green – a color
meant to last only one day but now still remaining on day five since the
manicure. I haven’t had the will – or the ability to stand the smell of nail
polish remover to change it. The balcony door is open, affording a partial view
of the balcony railing covered in a layer of ice. The sky is white. The sun is
winter-pale and without warmth.
Inside the apartment, there are great leafy plants, pots and
vases of flowers.
Christmas day, I read Lydia Millet’s How the Dead Dream. Boxing day, it was Joan Clark’s, An Audience of Chairs and today, reading
in reverse autobiographical order, I finished Augusten Burroughs’ “Running with
Scissors.” In-between reading binges, I slept, drank ginger ale and threw up. This
is the sickest I’ve been following a chemo session. The tips of my fingers are
numb – peripheral neuropathy. I cannot predict how food will taste and almost
everything tastes bad. Except, strangely – for cherries. I have discovered
today that cherries taste like cherries. It’s a small miracle and I’ll take it.
In addition to gobbling fiction (the only thing I can gobble
that doesn’t send me running for the bathroom), I’ve been doing research on
whole brain radiation – which, after 12 more chest radiation treatments, is
next up on the hit parade.
And it’s occurred to me that I don’t have to submit to it.
Lest this seem a little cavalier, I should explain the possible side-effects,
which can include (over and above the usual fatigue, temporary hair loss and
rashes): hearing loss, eye injury resulting in blindness, mental slowness,
behavioral changes, severe damage to normal brain tissue that may require
additional surgery, seizure, and permanent hair loss.
So I’m sitting here ever so quietly, with the blanket over
my knees. Cold air is streaming in through the open door as a listless sun
moves westward across the sky.
My emotions are as numb as my fingertips. There is no one to
call. There is no one to ask. There is no right answer. Yet, I must decide.
Yesterday, my elves came. They washed the dishes and swept
the floor and let me cry. They brought Ginger ale and threw out the food going
bad in the fridge. I am grateful for that. But I wish they didn’t have to see. I wish they didn't have to know.
It splits you from the world, this condition. Who can bear
it? What on earth can anyone say?
standing on a fault line. The sun comes up and goes down. Monday turns into
Tuesday and the days and weeks go by. But I’m standing on a fault line and when
I wake up each morning, that is my first thought.
Today, my meeting
with my medical oncologist went well. I didn’t think she would acknowledge my
letter asking for clarification but she did. She verified that what I am receiving is palliative
out that people interpret words differently.To a doctor, “palliative” means that there is no way to cure a disease.
Once cancer has become metastatic, it cannot be predicted.Doctors aim their arsenal of chemicals, of
radiation – and they hope that the patient may have a shot at more time, do
better (in my case) than the statistical eight month survival rate. That’s
eight months with treatment.Cancer, she said, cannot be anticipated by
friends – those whose instincts I trust – flatly deny the possibility of that
little time. The oncologist thinks it’s a good sign that, other than the
effects of chemo, I’m not sick – and so far, the PET scan shows no spread of
the cancer, other than the brain tumour they’ve removed.
sometimes days, I believe my odds of living longer are good. But the fault line
is there and it’s in my peripheral vision all the time so I live in two
distinct worlds – neither of which feels completely credible or real.
about how we touch the world and what remains of that when we are gone.What will happen to my father’s stones? The
small rounds and ovals he collected on painting trips in the bush – the ones I
stuffed into my suitcase after his funeral. Who will take my plants? What will
people remember of me – and how long will it be until my footprints fade and
This is not
morbid. Part of standing on the fault line lies in understanding that
sooner or later, the plates below will shift and the ground will open.That I am mortal is felt – rather than
thought. I view death with a mixture of fear, curiousity and relief.
when peopleurge me to be positive or
hopeful, it makes me feel so lonely. Please don’t tell me about the power of visualization
– which so many people confuse with wishing. That just isn’t how it works when you’re
standing on the fault line. Some days, I know that I will live years
longer.I don’t hope I will, or wish I
would – I know it.But other days, I understand that I cannot
know when it is my time to die. What
I hope for is a good death, for making my peace with the life, forgiving and
being forgiven. We all die. What more could you hope for than that?
you are facing the possibility of death, looking away is not positive, it’s
just plain dishonest.
that consciousness continues and some eternal egoless part of us survives the
death of the body. I do not believe in a vengeful, punishing creator. And I am
curious about the next stage.
And if I’m
wrong, if there is nothing at all, then I won’t know that and it won’t matter,
moving a muscle. I’m just going to sit here on the side of the couch that isn’t
broken in and I’m staying until it’s as cushy as the side where I usually sit.
cooking, eating or drinking.
doing bead work. Or taking a shower. Or brushing my teeth. Or walking on the
apartment is CLEAN. Clean floors. Washed windows. Dust-free surfaces. Clear surfaces.
fan is clean.
Go ahead, run your fingers across a baseboard, look behind something, just try to find a dustball.
oldest friends (women barely in their mid-thirties, of course) came over today, toting
rubber gloves and magic erasers and cleaning cloths and we all got moving. We broke out the mops, brooms,
buckets and the microfiber cloths and we only stopped once, for pizza.
I got a little done last night and this morning -
out of sheer humiliation at the thought I needed help to keep the place in
decent shape. I uncapped a new bottle of Murphy’s Oil Soap (the champagne of
cleaners) and scrubbed everything in the living room above floor level. Properly.
I picked up the messes that follow me like so many muddy-footed puppies and I hauled the garbage down to the dumpster. But I’d never have accomplished anything close to this miracle of sanitation on
my own and Goddess knows, I would not
have got down on my hands and knees to scrub the kitchen floor.
talked out of the fuzzy toilet seat cover and the little u-shaped
front-of-the-toilet mat. Germ magnets, don’t you know. I’ve been kicked out of
the way of furious vacuuming when I tried to help and thrown off damp floors.
“Why don’t you go sit in the bead room?” Okay. Ma'am, yes ma’am.
And here I
sit in my fabulously clean shiny apartment, terrified to move lest I
mess something up or blob something on a floor. Maybe I’ll use the time to send up a prayer of thanks for
friends who love me enough to get dirty and develop blood blisters trying to
replace the sponge mop head. That’s
something useful I could do without causing an illicit fingerprint to show up
on clean glass.
of household grace now has to last me through the upcoming month of biliousness and
fatigue. Please leave your shoes at the door.
Better yet, let me stay at your place for a week or so. Then, when I'm in a nice chemical semi-coma and don't have the energy to make messes, you can dump me back here.
I am camped
in the living room. On the couch are: two decorative pillows and one bedroom
pillow in a white pillowcase, one gray and white plaid nap blanket and one
chocolate brown nap blanket. At my feet, my black purse, the accordion file of
hospital issued cancer readings, a bag of bright colored yarn and my boots. On
the table itself: scotch tape, a roll of toilet paper (I’m out of Kleenex), two
remote controls, a box of licorice, a glass bowl half full of cherries, a
kitchen timer, my address book, a non-winning scratch ticket, a pair of
scissors, glasses, carnelian earrings, a pen, a copy of “Middlesex” by Jeffrey
Eugenides and my day book.
As you can
plainly see, Housework Day has been a non-event. No one has made a hat. Think
Happy Pack Rat in Nest. I am at
page 496 of “Middlesex” – and (weakly) in my defense – the dishes are done and
the bed is made.
ambled over to the corner store – a 9 minute round trip. I timed it. The wind
was strong enough to make staying upright difficult but the temperature was
mild. It was exhilarating to be outside pushing against near gale-force winds. The
store cat, an anorexically thin tabby who adores anyone who speaks to him, was
there to rub against my legs and offer his neck to be scratched.
Everything engages me. At a certain point, the toxins in my system diminish. Chemo and
its’ after-effects are a damp, dirty shroud, dimming everything – including my
will to live. But today, colors return, hope boogies back in with a swagger and a wink and the most
ordinary things…weeds, cars parked in driveways, churned earth where the
sidewalk plows have swerved off-course…everything is vivid and in Technicolor. It
is not that my neighborhood is a beautiful representation of life – but that it
is life, bony-spined cats and all. Beauty or ugliness is beside
the point. I want to stay a while longer. I want to stay.
This time, I
was afraid it wasn’t going to happen – that miracle of having my senses and
sanity restored. After round two, it only took three days. This time, it took
eight. Nevermind. I am grateful…for the poems, prayers,
sweetgrass burned, good wishes, phone calls, gifts of cherries, notes, stories and letters…
I got here. And while there is more of the shroud to come – I will get here
I started this hat last night, and finished it this morning before I went to be molded and tattooed for radiation treatment. The hat tried to be a beret - and I got the flat circle calculations right but kakked out on figuring out the decreases and how big the flat circle had to be in order to achieve beret status. Therefore - voila! A cap. Tomato/Tomahto, right?
Point is, I actually do other things than whine, lump around not doing housework and complain on this blog. Even if they don't turn out quite the way I expect.
Leaping to the same old topic (I didn't say I wouldn't)....
The appointment with the radiation oncologist went well. He'd received my letter and spent a careful 30 or 40 minutes trying to make sure I understood my situation and treatment as thoroughly as possible, after explaining (a little pleadingly) that it was important that I knew just how weird and tricky neuroendocrine cancer is - how hard to predict. They are throwing everything they have at it, apparently. And he, for one, is pleased with the results, so far. And I got my answer - which is that anything is possible. It was that "anything" I needed to hear. A little sliver of possibility goes a long way when you're doing your best Ten of Swords impression and yet still trying to get the hell up and keep fighting.
Apparently, he isn't expecting the chest radiation to be too bad. It's localized, away from my spine and not too close to my throat. Still, I can expect extreme fatigue, burnt skin and maybe some nausea. But Goddess bless him - if I can manage on Gravol, he won't prescribe steroids. He pretty much promised I'd feel like warmed over dirt for a while - but he did say it with a fair amount of sympathy.
Then I get a month off. From roughly January 13th to February 13th, I get to not go to the hospital while my poor ravaged immune system tries to recover for - Tah Dah! Brain radiation for two weeks. Now here's where it gets a little scarier because I may be dropping an IQ point or two at the door. Not recoverable - much like the hearing in my left ear. I told him I was concerned about that and he replied, to my utter amazement, "I am too." He said it would be something only I would notice if it happened...just a little slower solving problems, thinking things out.While this isn't exactly good news, I appreciated his directness. It seems I can hear just about anything - as long as it's honest.
And the other thing I did besides whining about cancer was this bottle:
Tomorrow, while Halifax enjoys another "weather bomb" of rain and high winds, I plan to pull ALL the stops out and clean the apartment.
But don't be surprised if I fit a little whining in, too.
knows I would just love to have something brave and cheerful to say to you for
a change. Truth is though, that I’m only just at the point (7 days after my
first chemo of this round) that I dare see friends or talk on the phone. Why?
Because the cancer drugs and the drugs to mitigate the effects of the cancer
drugs make me mean as the proverbial snake. I have to maintain radio silence
for fear that I will aim some malicious, warty-toad of a remark at an
unsuspecting (and undeserving) well-wisher.
Or, just for the sake of variety – I plunge
into despair and desolation so deep I resemble the Tarot deck’s Ten of Swords.
I mean, just look at the picture -how
dead can you get?
Today is a
little better. I went shopping with a friend. And then we went out to lunch.
Two stalwart souls I’ve known for 40 years lugged my groceries upstairs and
came to visit – in spite of my complete lack of charm or civility. Thank
heavens. And while I felt just as bilious as I have for the last 7 days, it was an improvement to feel nauseated and bilious outside the apartment – wearing makeup,
dressed like a human being instead of The Creature From the Laundry Basket. I
count my gains in small increments. Getting dressed. Washing the dishes. Taking
the garbage out. Answering the phone.
have to dig so hard for the losses and currently, the one looming largest is a
significant hearing loss in my left ear. At first I thought it was the cold
that is still lingering on after over a month…blocked ear canal etc. But today,
I googled “chemo and deafness” and guess what turned up?
From Chemotherapy More Common Than We Think”
mentioned this creeping deafness to my GP, my medical oncologist and my
radiation oncologist – all of whom either didn’t know what to say or didn’t
bother to tell me what they knew. My GP looked in my ear and remained silent.
My medical oncologist simply did nothing and didn’t comment. And here's the icing on the cake - the worst offender is Cisplatin - the big ugly toxic gun they are using on me.
see the radiation oncologist – and I’ll mention it. Again. And I’ll ask about the possible reduction in
IQ that may come about as a result of the brain radiation that is scheduled as
the grand finale to my treatment.
this much. At this point, it’s too late to turn back – but knowing what I know
now, I’m not altogether sure I’d agree to this kind of “cure” ever again.And I think I'm about to stop feeling guilty about being angry. Before anyone jumps in to tell me that the docs are doing all they can - I know that. But I can't help wondering how many "deficits" they would be willing to personally take on were they in my situation. And how would they feel about the (literally) deafening silence from those in charge of caring for them?
Poor readers. I'll try for something more uplifting soon. A few more days, I tell myself, and except for the deafness, I'll feel like my old self. A self I remember as being a great deal more charitable than the self I've been stuck with for the last week or so....
December 2, 2011 Dear Doctors: Last night I dreamed that I could not
recognize your faces. I tried to recall haircuts, eye brows, eyes or other
features, but I could not make the connections. I realize this is a shadow of
the fear I feel when I look in the mirror and a face I hardly recognize looks
back at me. That changed face matches the life I barely recognize and reflects
the apprehension I now live with, day to day.
I sailed through brain surgery with little
more than the loss of my hair - which had been my pride and joy. I was so
relieved to be divested of vertigo, nausea, headaches and loss of motor
control, that I felt better than I had in many months, and when the results
came back on the biopsy of my brain tumour and I asked one of the surgeons about
my prognosis, I rejected the first thing he told me - which was that
statistically, I had 40 weeks to live. He added that he'd had a patient with a
similar condition who was, as far as they could see, cancer-free, five years
later. That would be me, I decided. Cancer-free in five years.
Now I'm not so sure that wasn't denial.
When I first met Dr. B, I told him I
didn't want to see my death sentence on my Doctor's faces - but that I wanted,
(perhaps paradoxically I think now) to be told the truth.
As it is, I'm not at all sure that I know
the truth, or perhaps more accurately, I do not know the possibilities.
I thought, when I began chemo, that the
idea was to render the tumour in my lung harmless. When I met with Dr. R., he
told me that surgery would be performed if there was anything left after the
chemo - that he would remove whatever was left and clean up the edges. Now
radiation has been added and according to Dr. B., that is to stop the tumour
from continuing to spread. Dr. M. tells me that there is no chance the tumour
can be rendered benign. There is to be no surgery. Or at least, this is what I
think I'm hearing.
And I have a hard time not hearing my death sentence in your
answers and in your silences.
So, without asking you to predict, I am asking
you to use your experience, medical knowledge and your intuition – to try to
answer some questions: What exactly is the chemo and radiation
expected to accomplish? Given that I face the possibility of other
complications arising from both treatments, some of them serious and possibly
permanent, is this first round of treatment and the radiation on my brain
administered in the hope of giving me the possibility of a significant period
of remission - a year, two years or more? Or do you believe, collectively or
individually that even with this treatment,it is likely Ihave less than a
Dr. B. tells me there is a chance that the
cancer has spread to other areas not yet detectable on scans. Emotionally, this
is far cry from the hearing, to my great relief that nothing else showed on the
PET scan results.
Supposing that the cancer has spread, am I
looking at repeatedly facing chemo and radiation treatments? A clearer picture of the possibilities
would greatly help me come to terms to the emotional impact of all this. As it
is, I barely recognize my life and have no idea what lies ahead. If I am
looking at death sooner than later, I would like the opportunity to try to make
peace with that. If the cancer goes on spreading, I have decisions to consider -
and I need to know what will happen if I refuse further treatment. I need to
know what my death might look like and what can be done for me in a palliative
If there is any chance of a decent length
of remission, I need to know that too. As you can imagine, it is difficult to
keep a positive attitude when so littleI am being told seems to indicate a reason for hope. I have always been a fighter and I am
willing to do what I have to survive - providing that I can survive with a
decent quality of life and most of my faculties intact.
If you feel that there is any hope for that, I really need to
hear it from you. Without asking you to guarantee anything and knowing that you
have no crystal ball to consult, but based on your experience, I very much need
to know what the various outcomes might
be. I can hear whatever you can tell me, even if the news is bad, provided it
is told to me in a humane and not simply clinical fashion.
I am sending this letter to you in the
hope that you will have a little time to consider my questions – rather than
blindsiding you during the limited time we have for consultation.
In closing, I would like to thank you. I
know that you are all doing your best for me and I am grateful to be in skilled
hands. All I ask is for a little more clarity and for you to trust that I need
this in order to be able to handle the difficult life changes I am