03.10.12 clarify


Observation: wandering around with a bandaged face is akin to having a superhero skill. I’m invisible! People look at me, and their eyes slide away. . .

Except, of course, the people who stare, point, and whisper.

I thought I was used to this sort of thing but I forgot, or refused to believe, what it always feels like. My default setting is to ignore whatever I cannot change and this would fall under that heading, but honestly, the whole thing is tedious.

I’ve been thinking I should write CANCER across the bandages. Just to, you know, clarify.


03.07.12 raw


When the skin cancer specialist heard that the genetic test was negative, he laughed and said “The plot thickens!”

Then he examined my face, and ordered more biopsies.

One of the more alarming aspects of my skin cancer is the fact that the tumours are unusual. No general practitioner I’ve ever met could accurately diagnose a lesion, and very few dermatologists have been willing to treat me.

Looking at my own face, I couldn’t see what the doctor wanted to remove.

I could only see the scars.

But that is irrelevant, and the appointment was arranged.

What does a biopsy feel like? Nothing at all.

This is the routine: I lay flat on my back, head held still, eyes closed against the light. I listen to the sound of my flesh being gouged away and stitched back together.

Next, the doctor says some stuff I instantly forget. Then the nurses try to talk to me, offer tissue, a mirror, kindness.

But I always just want to escape, and inevitably have my feet on the floor before they’ve finished affixing bandages.

That is how it always works, and precisely what happened today.

The difference is: I walked outside, accepted a ride in my very own amazing car, stared out the window at a city I love. I went for a walk in my favourite neighbourhood, ate some good food, had some excellent coffee. I walked out of the clinic into the life I chose, the life I made.

For the rest of the day I avoided mirrors, joked with my family, ignored the bandages on my face.

Until the end of the evening, when it was necessary to change the dressings, and I saw the raw red jagged stitches crumpling my cheek.

Then I cried, but not because of the pain. Not because of the new scar, or any of the hundreds of scars marring my body. Not because I’m worried about the results; I already know what the lab will say. I have cancer.

Instead I cried for the little girl who never knew a single moment free of pain and uncertainty.

I cried for the little girl who never, ever cried – because she was so busy imagining a new life far away.


03.01.12 negative


Today was the big day, the culmination of years of dithering and debate. I woke up early, grabbed a cup of coffee, muttered the standard protests, and proceeded to a prestigious and historic hospital widely perceived to be one of the best in the world.

The doctor performed a perfunctory examination, looking at my palms and knuckles, measuring my head, scribbling notes on paper. Then she folded her hands together, looked mournful, and intoned the results of a DNA test performed to confirm the genetic disorder I was diagnosed with in 1983:

Negative.

I stared at the doctor. She stared at me. There was a long pause, then she said “This is quite a mystery.”

I raised my eyebrows, thinking, no fucking kidding mate.

The doctors in Cambridge were so exquisitely sure the result would be positive they refused to run the test. The doctors in London only agreed because I hassled them and because testing for symptoms routinely and in perpetuity seems a little, well, wasteful. Not to mention the fact that the tests themselves are harmful to healthy people.

“Of course,” the doctor continued, “you are still diagnosed. . . symptomatically.”

Yeah, well, whatever. This is, at best, sleight of hand. If DNA sequencing cannot confirm I have the mutation known to be the cause of the disorder, we actually know less now than we did last week.

Why? Because I only meet two criteria of the autosomal dominant genetic disorder they tested for. Critically, the diagnosis stamped in my chart does not explain a myriad of other symptoms. It might be the cause of my skin cancer, but it is not the cause of my primary cancer.

From the perspective of specialists in various fields, it is categorically impossible to have the specific type of cancer I was diagnosed with at age twelve, unless it can be attributed to radiation exposure – and that is something my childhood doctors insist did not happen. The only other viable explanation is a different autosomal dominant genetic disorder. And hey presto! I have three of the criteria for that one!

But if I’m diagnosed with a single autosomal dominant genetic disorder, the experts say I cannot have two, because it is “statistically improbable.”

And now the genetic tests say I do not have the genetic disorder I remain diagnosed with.

What are the odds of that?

One possible answer to the conundrum is that I have “something else that nobody has a name for yet.” That at least is more rational than “we don’t want to think about it.”

I am so tired of this I am barely able to sit through the appointments, but I go back, year after dreadful year.

Why? Because until we find a definitive narrative, I will be forever cursed not just with ambiguity but also with extensive, invasive, exploratory tests. Just in case.

The logical and appropriate choice would be for the doctors to order a test for the only other known disorder that can cause the primary cancer.

Like the kids say, DUH.

The doctors have steadfastly refused to run the second test because, you know, because. They have a hunch? Inkling, suspicion, belief?

I stared at the doctor. She stared at me.

She turned around and ordered the new test.


02.14.12 observation


Observation: Lisbon has more drug dealers per capita than any place I’ve ever been. Also, boy scouts.

The dealers are shocking because nobody has ever offered to sell me drugs, let alone six strangers on any given public square.

The boy scouts? Well, I kind of thought they were extinct. Or at least, elsewhere in the world the older ones refrain from going out in public with the hats on.

I’m here to celebrate Valentine’s Day, and on that subject: how peculiar and amazing is it that I’ve been hanging out with the same fellow for a couple of decades, and we haven’t run out of things to talk about?

Romance, sunshine, and cream tarts: Lisbon is a wonder. Most particularly in the provision of old rickety trams and funiculars to traverse the steep hills.

This has been the best trip ever.

bee_castle_portugal


02.10.12 sunlight


The surgeon wanted to make a standing date for more super annoying cancer treatments every Friday for the rest of the month.

I went “Uh. . . no.”

He was surprised – who turns down such exciting offers?

I shrugged. “I’ll be out of the country.”

The plan was even (to my not so secret delight) a direct challenge to the whole notion of cancer, because I jetted away toward that dazzling forbidden treat: sunlight.

Yes, it is true, I took my fresh skin cancer scars and a cluster of tumours-in-waiting to Portugal, where I have deliberately and provocatively walked around during daylight hours.

Oh, I’m such a rebel.

Though of course I kept my tender hide covered with multiple layers of clothing and sunblock and such precautions. Because, you know, that is the “right” thing to do.

And I always do the “right” thing. Even when it is quite clearly wrong.


02.09.12 remedy


For the last couple of decades I’ve been under the impression that I possess a tendency toward cyclical depressions, otherwise known as Seasonal Affective Disorder or SAD.

The proof of this would be a tendency toward winter hibernation, and a sort of poignant despondency around my birthday. Which, if you recall, is also the anniversary of my terminal cancer diagnosis and (forevermore) the usual and expected time for me to trudge back to the specialty clinics for more treatment and evaluation.

It is true that in the past, I have been in a Very Bad Mood throughout the first six weeks of each new year. Anticipating the catastrophe never made a difference, because there wasn’t anything to do about it. I couldn’t conjure up a solution, just like I can’t hope for a permanent cancer cure.

Except apparently I could make my life feel a whole lot better: all I needed was enough money.

I have finally and officially clawed my way out of poverty. Desperation and disorder have vanished, to be replaced by . . . not luxury, not at all. I have something better: stability.

This was the first year I’ve lived in a truly warm house. I own a new winter coat and gloves. I was able to pick and choose specialists, and make judicious decisions about timing the appointments. I have a car for the post-operative days when it is too difficult to face public transit. I have an extra £35 in my pocket to buy salve that makes the scars feel better. I can order food, or eat in restaurants, when I am too sick to cook.

Critically, I can do all of this without shorting myself or my children in other ways. I don’t have to choose between utilities and dentistry. I don’t have to ignore one bill to pay another, or engage in bizarre machinations, or worry, or wonder.

I spent forty years thinking I had SAD when really the diagnosis was My Life Fucking Sucks Disorder.

The new knowledge is so much more useful, because there is a remedy, and it doesn’t require forbidden sunlight.

Money might not buy happiness. But it can be used to acquire shelter, food, medicine, and all the little necessities and treats that I never even knew I could wish for.

I haven’t fully recovered from the recent cancer therapy, but this year I’m not depressed. Instead I feel. . . cautiously optimistic.

Nowadays my life doesn’t suck – in fact, it is amazing.


02.05.12 solicitations


On the fourth day after treatment I was still raw – literally – and my skin had broken out in a predictable and nasty allergic reaction to the dressings. My back was on fire with that special itch so well known, and loathed, in childhood.

Unfortunately, this meant that I had to grit my teeth and venture out to an upscale lady store, where they sell premium potions that actually work.

I wouldn’t like to chat at makeup counters anywhere in the world, but the whole thing is so much worse here in England. I like the standoffish silent customer service prevalent in most stores. I do not understand why the people employed in the beauty industry are required to pretend they care. It is all just very awkward and artificial.

Which might be the point, but it makes me indignant when people suggest that I wear blusher, change my eyeliner, or buy a new shampoo. Do they think my appearance is an accident? Because, you know, it isn’t. Everything about me is excessively deliberate, verging on obsessive. I would think that is obvious.

I picked up the tiny yet massively expensive pot of salve and queued at the counter to pay, silently hoping for an efficient check-out. But the (very nice) woman at the till, apparently unable to read my urgent need to be elsewhere, started to rattle off the standard solicitations to join loyalty card schemes, take advantage of multi-buy discounts, etc.

I politely declined all of the offers, including a chance to partake of a free massage. This of course generated a puzzled delay in the proceedings: who turns down a free massage? The person who has recently had a string of tumours removed from her neck and back, duh. But I couldn’t say that. Talking would not expedite the encounter.

The (very nice) woman held up my purchase quizzically. “Lots of people have been buying this,” she said. “What is it for?”

Well, as it says on the packaging, it is healing gel. Designed to treat scars and wounds.

Flummoxed, I wondered if she really wanted to know, if it would be appropriate to tell? But no, honestly, it would not. I’ve had people ranging from professors to strangers burst into tears upon hearing the word ‘cancer’ issue from my flippant lips.

Instead I held up my calloused fingers and told a sideways sort of truth. “I’m a writer, and holding the pen all day hurts my hands. This stuff makes them feel better.”

She turned over the jar in her hand, reading the description. “Does it really work?”

“Yes, totally. Works a treat.”

She finally handed over my purchase and receipt and I departed to hide at the library, where nobody talks to me, or anyone, ever.


02.02.12 rendered


The experience of cancer, much like the experience of being a mother, involves large swaths of caretaking. Rendered, not received.

From the nurses holding my shoulder to the taxi driver who picks me up outside the clinic, the friend or family member who changes the dressing on the wounds, the person behind the counter as I buy a cup of coffee: whatever happens, whatever they say, it is my job to either conceal the truth or make them feel better about what they are looking at.

I’m not going to qualify this – it is neither defensible nor desirable, and I find the whole thing tedious. But it is demonstrably true that life is easier when I obfuscate and redirect. Other people are too sensitive, or confused, or ill-mannered, to deal with honest answers to the question “How are you today?”

I’m not allowed to say “Fine, if you like having your flesh scourged off by laser death rays.”

It just isn’t done.

Perhaps if my cancer were a recently acquired novelty I would feel differently; there is no way to test the hypothesis. But I’ve been doing this for twenty-nine years, during which I’ve been granted no slack or convalescence. Biopsies are routine, bad news is expected, and if I want to have any kind of life at all I just have to keep moving.

My cancer doesn’t scare me, and it shouldn’t scare you, but that does not mean that either of us have access to a shared vocabulary. You’ll just have to take my word for it – there is no easy or elegant way to discuss these matters, and when you can’t talk about something so central to your experience of everyday life, it distorts all social encounters.

When I left the clinic on the first day of photodynamic therapy I was under the impression that the procedure had been trivial, insignificant. Walking through Marylebone and chatting about lunch I couldn’t quite believe, and then did not want to acknowledge, my body reacting. But within about twenty minutes it was inescapable – because the treatment worked. My nerves, muscles, and blood knew something bad had happened even if my brain resisted. My body was not happy as it proceeded to demolish both the cancer cells and my equanimity.

I still would not have characterised the sensation as pain. Oh no; it felt like my skin was trying to crawl off my body.

Later at home I was sitting on the couch having a reasonable conversation with Byron when the true reaction set in – what is it in biological terms, a massive drop of adrenaline? I just sort of drifted sideways on the couch with my eyes closed, still listening but not especially competent.

My son wandered through the room and objected, because I am not allowed to nap. The children say that unscheduled rest makes me cranky. He said “Wake up, baby ninja mama!”

He was right (and very amusing). It might not be fair that I am expected to appear strong, fine, and capable all the time, even immediately after creepy experimental cancer therapy. But that is irrelevant. I am in fact scrappy, tenacious, a fighter. I don’t like sympathy or drippy emotions. If I require assistance I would prefer it delivered with scathing humour, thank you very much.

There is no practical alternative.


02.01.12 tough


“On a scale of one to ten, ten being the worst pain you’ve ever experienced. . . .”

I let the doctor finish, then said “My pain threshold is calibrated on a different scale. This won’t hurt.”

He signalled to the nurses behind me, and they all put on safety goggles. He said “We have transplant patients who say this is the worst pain of their lives. They’re tough nuts, but they feel it.”

I shrugged, and strapped on my own pair of safety goggles. “Uh huh.”

The procedure started – an unseen machine behind me delivering a targeted blast to the cancerous lesions blooming across my back.

The nurses and doctor murmured amongst themselves about clinic schedules and supplies while I sat, calm and remote and cross-legged, contemplating the nature of pain.

Not because the mysterious treatment hurt: as predicted, I could not feel anything at all.

The nurse in charge of my left shoulder said “You are so flexible, so calm – do you meditate? Do yoga?”

“No,” I said. “I do skin cancer.”

I was three years old when the treatments started, and I’ve lost count of how many cancerous lesions have been removed. Or rather, I stopped counting after cancer biopsy number three hundred, because I was bored. It is possible (if not desirable) to get used to anything, and I am accustomed to having my flesh gouged off.

It is all routine: the speculative gaze of the doctors, the mournful conversations with nurses. The smell of antiseptic, the texture of the gowns, the crackle of white paper on the examination table – all familiar and expected.

This particular appointment was an innovation because it was the first time I’ve been offered photodynamic therapy, and the first time I have ever consented to experimental treatment.

Throughout the procedure I just sat there, fingers pressed lightly together, observing the sensations. The nurses asked “Does it hurt?”

I said “I wouldn’t characterise this as pain.”

This was the truth, though midway through the session my body had noticed the shock and my brain was shuddering with atavistic fear. The urge toward fight or flight is so difficult to resist, because it is primitive, essential, instinctual. I just kept breathing as the muscles in my neck seized with panic, and sweat broke out on my palms.

But it didn’t hurt, it couldn’t hurt, what could ever hurt me?

The doctor laughed and said “You are the toughest patient we’ve ever seen.”

Give me a ribbon, a medal, a commemorative statuette: my performance of stoic endurance is impeccable. Nobody in my immediate vicinity will see anything except acerbic cheer. Nobody will see me cry – I won’t cry until several weeks later, when I’m alone, and it won’t be because of the pain.

I will cry, eventually, because I don’t want to be sick. I’ve had my share, I don’t want any more. I hate the rituals, the attention, the dependency, the loss of both flesh and time. Pain is immaterial, ephemeral, but this is real: I can’t wear my regular clothes, for weeks on end. I can’t wash my hair. I am not allowed to walk in the sun.

Worst of all, I need to ask someone to help change the dressings on the wounds. This might sound minor, but to me it is enormous, unacceptable, shaming. But again, I don’t talk about it. I don’t acknowledge weakness. I just say thank you and keep breathing.

One week later I went back for my second session of PDT, and the doctor continued his commentary on my putative toughness. But this time, he alternated tough with tolerant – as though the words had the same meaning.

I sat cross-legged in the hospital gown on the crackling paper of the examination table and considered the point. There isn’t much that bothers me, but I would have described myself as oblivious. Though perhaps he is right – maybe my imperious disregard of obstacles and objections is connected to the experience of growing up with cancer. I don’t know, and honestly, I don’t care.

Toward the end the doctor asked in some amazement “Do you ever complain about anything?”

I said “No.”