NUCLEAR AND WINTER SUNS

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?

GEOGRAPHY

I am 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 treatment. 

She pointed 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 anyone.

My closest 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. 

For hours, 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. 

I think 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 disappear? 

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. 

Sometimes, when people  urge 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? 

And when you are facing the possibility of death, looking away is not positive, it’s just plain dishonest.

I believe 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, will it?

SHE IS SITTING VERY VERY STILL

I’m not 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. 

I’m not cooking, eating or drinking.

I’m not doing bead work. Or taking a shower. Or brushing my teeth. Or walking on the floors.

Because

My apartment is CLEAN. Clean floors. Washed windows. Dust-free surfaces. Clear surfaces.

My ceiling fan is clean.

Go ahead, run your fingers across a baseboard, look behind something, just try to find a dustball.

My 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.

I’ve been 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.

This state 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.

BONY CATS AND HAPPY PACK RATS

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.

 

Today I 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 again. 

Thank you.

WHAT I DO WHEN I'M NOT WHINING ABOUT CANCER

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.

NOTHING UPLIFTING YET

Goddess 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. 

I don’t 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?

“Deafness From Chemotherapy More Common Than We Think”

I had 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.

Tomorrow I 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.

Tell you 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....

A LETTER TO MY DOCTORS

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 I  have less than a year?

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 care setting. 

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 little  I 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 experiencing. 

Respectfully,

Linda