Monday, October 31, 2011
It’s Halloween. Two days ago it snowed, an unheard of weather event for October in Northern Virginia. I assume the local Fox station will use this to bolster their opposition to global warming (actually, my area got the tail end of the freak storm. In other places North of here, hundreds of thousands of people were without heat or light.) Tonight as I was walking home, a couple of kids in store-bought costumes offered me well-handled Milk Duds.
There is never a lot of kids trick or treating in my neighborhood. My house is on a street that, over the years, has become a thoroughfare with speeding cars and trucks making it a dangerous place for pedestrians to wander. Parental fear has also played a role in making this holiday one celebrated by increasingly few unescorted children. There are far too many stories of razor blades in candy bars and needles in apples. Many such tales, I think, are urban folklore but whether they’re fact or not is irrelevant. There are predators. In my county, the police had apparently advised all persons convicted of child-related crimes to not participate in this holiday. I’m not sure how such an edict can be enforced, but its intentions are worthy.
For me, Halloween is the beginning of the silly season. From October 31st to March 10, I have a tendency to err toward the sad and the maudlin. For several years now I’ve tried to identify when I started feeling like this, when and why this dislike for holidays took roots and grew. I can think of a host of possible reasons but none are satisfying. The one closest to what may be the truth is that this time of year is when families celebrate their unity. Thanksgiving in particular—a day of gross overindulgence—is almost tribal. It is the quintessential American family holiday, and the late columnist Art Buchwald immortalized in all French-speaking countries by describing it as Le Jour de Merci Donnant starring the courageous Capitaine Kilometre Deboutish .
Stores will begin their Christmas advertising tomorrow. I suppose this is necessary though I personally don’t know a single person who goes Christmas shopping before December 23rd. No, wait, I take that back. I think I might know one—she does all her shopping online—as well as two or three who actually like Christmas carols. Personally, I’ve long felt that the little drummer boy gets way too much airtime.
New Year, of course, is amateur night for anyone who once abused alcohol or controlled substances. We stay home, preferring to avoid the carnage, the arrests, the regurgitation and hangovers. We’ve been there and done that, and we don’t need a special day honoring our former major shortcoming.
St. Valentine’s celebrates gift-cards, chocolate and the color red. It is perhaps the one time of the year when men outnumber women at Victoria’s Secret. According to Wikipedia, almost 190 million roses are sold in the three-day period surrounding February 14th. It is also believed that some fifteen percent of women report sending themselves roses for Valentine’s Day. Apparently nothing says “I Love You” like dead vegetation.
March first is my birthday, and I don’t see cause for commemoration there. March 10th is the anniversary of my entering a twelve-step program, and frankly, celebrating the day I decided to stop being a f*ck-up seems kind of silly.
So there you have it. You can have your holidays. I believe in Bastille Day, the 4th of July, Napoleon’s birthday and May 12, when Louis XVI ascended to the throne. And of course I will celebrate for August 8th, which honors the British Navy’s victory over the Spanish Armada.
Tuesday, October 25, 2011
When I was a kid in Paris, my parents often entertained—on a shoe string budget—a fascinating array of guests. Charles de Gaulle came for lunch one day, and one night Edith Piaf got very drunk during dinner. Francis Poulenc played piano in the living room of our apartment in the 17th arrondissement as a few minor movie stars vamped.
More often than not, I was sent to bed long before the guests arrived, but on a few occasions I was allowed to stay up and, as it were, mingle. There were many other guests whose names and faces I have forgotten, but the visitors who made the greatest impression were the ones with numbers tattooed on their forearms. These men and women had survived the German concentration and extermination camps—Dachau, Treblinka, Auschwitz, Buchenwald, Ravensbrück and others—and the blurred blue numbers inked on their skin were all you needed to know about their pasts. They were survivors of a hellish encounter with other men and women who were not quite human. They were Jews and Poles and Tzigans and homosexuals and they wore their numbers with pride, resignation, sadness.
I’m reminded of this today because I read in the paper the obituary of Jerzy Bielecki, a Polish Catholic who, with his Jewish girlfriend, managed to escape from Auschwitz in 1944 by disguising himself as a German SS. Mr. Bielecki and his girlfriend were separated shortly after their flight. Both married, raised families, and through sheer luck were re-united in the summer of 1983.
Jerzy Bielecki was 90 when he died on October 20. He was a member of a rapidly diminishing population of prisoners who endured imprisonment and worse at the hands of Germany’s National Socialists. There are probably fewer than 10,000 camp survivors left and they’re vanishing quickly.
In the US, a country that has never been subjected to the rule of invaders and whose people have, by and large, been free of the extreme politics that led to the creation of death camps, it is hard to even imagine the willful and planned annihilation of millions. But in France, Belgium, Italy, indeed in all of Europe, the death camp survivors have been a reminder for the past 70 years of man’s ability to propound hateful philosophies and actions in pursuit of an ideal, perverted though it might be.
It’s hard to conceive of anything like Dachau, Treblinka, Auschwitz, Buchenwald, or Ravensbrück ever existing again but sadly genocide rarely rests.
I hope Mr. Bielecki and his estranged girlfriend had wonderful lives free from the nightmares of their pasts.
Sunday, October 23, 2011
Sometimes in the middle of the night I wake up suddenly and think, “I’m 65; there’s no one else in the house, and I have cancer.” The notion rises, echoes like a shout in a deep canyon, leaves me feeling slightly stunned. The first two statements I can accept, the third remains problematic.
I spend an average of 20 hours a day by myself. I’m single and live alone. Writing is generally a solitary preoccupation, and the truth is that for the most part I enjoy my solitude. In recent times, though, it has come to be wearying.
I’ve been sundowning lately. I’m familiar with the manifestation because I saw it in my father who, late in life, would become depressed when the sun set. Whatever his mood during the day, he would lapse into melancholy in the evening and his feelings were easy to discern. Sundowning typically occurs in people with Alzheimer’s and dementia, but it’s my belief that it’s not uncommon among normal people who’ve experienced some sort of physical shock. I saw it often when I worked as a counselor—drug addicts in the first few days of withdrawal would crash when the sun set, and friends in the nursing profession have told me it’s common among the bedridden in hospitals. It may, or may not, have something to do with one’s circadian rhythm, and it has not been studied extensively. I do know it’s very real, and not an imaginary ailment.
Here’s something else I’ve begun to notice. Some people, friends and acquaintances I’ve known for a decade or more, are avoiding me. I mention this over breakfast to my friend Deirdre, an eminence grise at the Kennedy Center in Washington, who herself suffered a nasty bout with cancer some years ago. She laughs, says, “Oh yes! I noticed that too. People would turn away from me.” Her husband, Kim Peter, nods in agreement. “They think you’re contagious…” I recount one instance where I faced such a person and she refused to look me in the face, sidling away as quick as she could. “This is where you know who your friends are,” Deirdre says. And it’s true. Though some people have been amazingly supportive, others have preferred to act as if nothing has occurred. Personally, I think that’s due to a recent social phenomenon that has taken the nasty and painful moments of life and sequestered them away from the public eye. We no longer deal with life’s phenomenon—birth, death, illness, breakdown—at home. We hospitalize, we send to the hospice, we pretend nothing is amiss.
Kim’s comment was humorous, but I also think the fear of contagion is probably planted deep within our cortex. No one knows how many millions have died from communicable diseases, but it would make sense that we would innately be afraid of anyone carrying a potentially lethal illness.
Still, it’s weird, and I’m tempted to plant wet splotchy kisses on those whose body language reads, “Don’t get near me.” But I probably won’t because I really don’t want to catch what they might have.
Friday, October 21, 2011
On the day I got the diagnosis, I walked home from the doctor’s office, a distance of a couple of miles. At the first Starbuck’s, I stopped and had coffee and a blueberry scone. About a half-mile later, I saw a sign advertising two slices of pizza and a soft drink for five bucks so I stopped there too and ate while watching the traffic flow by and thinking lugubrious thoughts. A mile later, I decided it was time for another scone and more coffee, so I did that. Then I went to the local food store and loaded up on black and white cookies.
In the last 21 days my food intake has gone haywire. For the past couple of years, I’ve been aware of diabetes, cholesterol and high blood pressure, and I’ve gone out of my way to eat in a more healthy fashion. No white flour, sugar, white rice, bread or butter and a very limited carbohydrate intake with more meals comprising high protein. I’ve become an expert at making pretty damned good egg-white omelets, cooking black beans, and eating yogurt.
Then came the first operation three weeks ago, and my eating has been going downhill ever since. It’s a struggle to stay away from the 350 calories scones, from dark chocolate, from pasta; I have totally fallen off the food wagon, scarfing down eggs and potatoes, and other victuals not good for me. Lately, I waken at three in the morning to have a slice of cheese. I’ve discovered my propensity to assuage fears with food.
There’s no genius involved here; food and fear are intimately linked, as are food and pleasure. If, in the developed world, we no longer have a fear of being without sustenance, it is only because food has become available and cheap enough to be affordable by all. In poorer nations, fear of starvation is very real and I doubt that populations as a whole gorge themselves to the point of illness.
We use food to feel better, to celebrate life and death, to mark holidays, to show our neighbors that we are well-off. We use it to shield ourselves from life’s unpleasantness—how bad can things be if we have a full stomach?—and, in an ultimate show of wealth, we waste it in abundance. We are addicted to the sensual pleasure food represents; we dote on the not-so-subtle mixture of salt, sugar and fat, and are brought to a gustatory paradise when all three are present at the same time.
We eat, we snack, we eat more. There is no time of day free of food for many of us, and our national obesity rate bears testimony that we are a country of food addicts.
As soon as I got home from the doctor’s office, I got sick. Whether from fear or nausea, my body refused to accept the 1500-or-so calories I tried to stuff in it, but over the past three weeks it has slowly and surely been willing to accept more bad food in small increments. This is dangerous. This is how relapses begin and take hold, by nurturing the belief that I can control a nasty substance if I ingest it only in small quantities. This goes for food, alcohol, nicotine, or, if I were addicted to gambling, just one hand of poker.
So it’s time to get back on the wagon. There’s really never a valid excuse for relapsing, though any addict can think of a thousand worthwhile reasons.
Ill health is a poor one.
Wednesday, October 19, 2011
I am doing strange things. Last night I fixed myself a Big Mac, complete with secret sauce (ketchup, mayo and a dash of Dijon mustard). It wasn’t particularly good and I know I will pay for the excessiveness, but it fulfilled something or other. I sleep too much but only intermittently. Midnight to three, five to seven, three to five. I am beginning to develop a taste for bland American cheese. This aberration is particularly worrisome to one raised on Camembert, Roblochon and Pont Neuf, French fromages whose aromas have been known to drive strong men from kitchens.
I am emptying out drawers, discarding books (I found a book, in Portuguese, on Brazilian agriculture. I am not interested in Brazilian agriculture and cannot read Portuguese.) I am strongly considering re-arranging all my books but can’t figure out whether I should do it by subject or author. The former makes more sense but implies an overwhelming number of categories ranging from building simple catapults and trebuchets to developing a successful worm farm in one’s back yard. Should I mix or separate languages? Literary miscegenation worries me. And then there are the books written by friends and acquaintances. Do they need a separate, honorific shelf?
In the meantime, I am awash in medical personnel. Doctors, nurses, shrinks and licensed clinical social workers, people who make appointments, interviewers, pharmacists, phlebotomists and other whom I think specialize in collecting those small half-filled cups of urine you leave in the bathroom for tests. Most, but not all, are smiling and cheery. Imagine that… All those people, there just for me. I temper this thought with the realization that as far as most of them are concerned, I am a name and an attending number which, I suppose, is as it should be.
I’ve been dealing these past few days with a new concept, that of radical acceptance, a sort of supercharged turbo version of acknowledging that all is not OK, but it is what it is and there is no choice other than dealing with it. There’s something reassuring about finding a name for a theory. It makes things more orderly, more controllable. Acceptance, to me, has always been a cushy word. Radical acceptance has edges.
The word ‘chemotherapy’ was first mentioned out loud yesterday by one of the medical folks and it chilled me to the bone. In some ways, it is even more frightening than the word ‘cancer’ itself, redolent as it is of serious illness, vanishing hair and nausea. I’m vain about my hair, and the idea of becoming hairless is really disconcerting.
The next surgery now has a date—December 9. Yikes.
Saturday, October 15, 2011
“Cancer,” said a friend much wiser than I will ever be, “is the cancer of society.” This is an undeniable truth, one that I’ve been wrestling with and against. I am now entertaining the possibility that an epiphanette has occurred, though I am not entirely certain. Epiphanettes are slippery things, metaphorical eels though thankfully without the slime, so here it is: Cancer does not have to define me.
Long ago I stopped defining myself as a former user of drugs and an abuser of alcohol. I no longer do it, and while no 12-step program would ever say I am cured, I don’t find it necessary when meeting new people to qualify myself.
Lately, I’ve been encountering quite a few folks who call themselves ‘cancer survivors,’ and I must admit, the label bugs me. I am already an appendicitis and tonsil removal survivor, as well as an umbilical hernia survivor. I have endured a deviated septum operation. I’ve also had bouts with Bell’s palsy, shoulder surgery, food poisoning, allergic reaction, a serious infection that required my being hooked to an IV for three days straight, and shingles. I have, I am happy to announce, survived all these ills and maladies, as well as two marriages, the deaths of parents, of a sibling and friends.
My other difficulty with the term is that it makes a scary disease even more frightening. I’m already terrified; that fire is burning hot enough without my stoking it. And lastly, what does it add to my life, to the definition of who I am?
At this very moment, cancer is a stain. I feel fouled and unclean, somehow marked. I can almost sense tainted blood coursing. It surprises me that others do not immediately recognize this corruption.
So that’s the next challenge, a greater degree of acceptance that this is what it is, no more or less. I’ll get there but it may take a while. In the meantime, I’m avoiding the survivor moniker and showering twice a day…
Thursday, October 13, 2011
Today for lunch I had a sausage patty sandwich on white bread with yellow mustard and a diet Dr. Pepper. Take that, traitorous body!
I’ve been inordinately touchy. The piece of paper inserted between the slices of my Kraft cheese was enormously upsetting. So were my attempts at banking on line and my struggle with the over-ripe avocado; the cantankerous jar of peanuts really displeased me and the fact that the dryer ate one of my favorite socks almost left me in tears. My food intake, which I’ve been watching for a while now (no sugar or other white refined stuff, very limited carbs and lots and lots of egg whites) has gone all to hell. Yesterday I bought frozen burgers and I hovered far too long in the pizza aisle. I am strangely drawn to Starbucks’ blueberry scones (350 calories) and less so to Greek yogurt. Why is it that the stuff that tastes the best is often the worst for us?
I have even more Vicodan, which I will still not use. Dr. K was effusive in his willingness to give me Percocet, Percodan and, pretty much anything to abate the pain which I must admit is actually minimal.The kitchen cabinet where I house my pharmacy is becoming a junkie’s dream. Here’s the interesting thing, though: I have not had a single desire to drink alcohol, which was, for years, the main remedy to all my ills. I’m grateful for this. Not that long ago, a woman I’d known several years drank herself to death after a series of increasingly alarming diagnosis.
The world hasn’t stopped. It should have but I notice that life seems to go on pretty much as usual. The weird German butcher at my Giant food store is still weird, maybe even a little weirder than normal. The empty restaurant in the local mall, the one that never has any customers and that I am sure is a mafia front, it’s still clientless. I saw the dope-dealing kid (8/28/11 blog) this morning and he looks exactly as he did two months ago. This is all very disconcerting. Surely the change in me should be reflected in the universe…
So what I do in the evenings is watch The Office. I own the entire collection—one of my wiser purchases—and still delight in the chemistry of the cast. I haven’t felt that way since Seinfeld. I’m reading a couple of great books, Suite Francaise and 1,000 Years of Annoying the French.
I am trying not to feel sorry for myself because, after all, if you want something done well, do it yourself.
I am only having limited success.
Wednesday, October 12, 2011
When in doubt, write. And since right now I am in doubt, anxiety, denial and anger, all bleeding into a fearful marmalade, writing seems like a safe venue.
Dr. K’s verdict this morning was of the good news/bad news variety. Yes, both tumors excised from my bladder were cancerous, but worse, one of them was a High Grade lesion, a sort of aggressive abnormality that may already have invaded nearby tissue. This translates to another bout of surgery in six or so weeks, under full anesthesia. Dr. K will take small plugs of tissue which the lab will biopsy. If I am invasion free, it will threaten to be a good Christmas. If not, more cutting, more manipulation of tiny blowtorches to cauterize internal wounds.
All in all, there are better ways to spend a cheerless, rainy day. We are on the cusp of autumn and the first leaves are painting the sidewalks with random colors. In his third floor office, Dr. K, a large but not genial man, has explained to me the ramifications of what has already been found. He is not an emotional person, and when I am first to use the word ‘cancer,’ he dismisses it as uninformative. “It’s all cancer,” he says. Dr. K, I suspect, is by the very nature of his profession a daily bearer of bad news. Is there ever good news to tell the patients whose innards need fixing? And so he uses a tone of voice remindful of an economics professor I once had at Georgetown explaining guns and butter to a listless class. “Do you understand what I am telling you?” he asks. I nod dumbly. I think I do but will probably need a few minutes to take in all this new information. I understand that my body, of which I have been taking increasingly good care, is betraying me. Cells are taking over other cells, replicating as with a mind of their own. He gives me an illustrated pamphlet, Understanding Bladder Cancer. The cover has an elderly couple walking hand in hand in cane. Dr. K shows me what may be happening inside me, underlines specific words, tells me of a treatment that originated in France (and therefore must be exceptional) that will be used to boost my immune system and fight off the bad guys. I get my prescriptions at the pharmacy, including a bottle of small pills that will turn my urine a jovial shade of red. I am somehow cheered by this; it’s just in time for the holiday season.
I sit in my car in the parking lot and the small joy derived from peeing a primary color vanishes. It strikes me that I do not want to share all this new information with the people who care for me and for whom I have feelings. After a bit of soul-searching, I find a strange philosophical equation forming in my mind. Divulging the information will cause sadness in others. I am ashamed of causing sadness. It is easier to stay silent. But of course, it isn’t. In the end I spill the beans, all the while thinking I do not want to be responsible for anyone’s discomfort.
It’s raining; the skies are low and uniformly grey. A bus disgorges passengers who look at their feet as they alight; there are puddles to avoid.
Fark. It’s gonna be a long six weeks.
Saturday, October 8, 2011
Things in my body still hurt. There’s an internal burning I assume will go away and an emotional hangover requiring attention. My throat feels tight and swallowing is difficult. I am told this is a normal follow-up to having a tube inserted to deliver the necessary anesthetic, but it’s an unpleasant feeling and I spent the better part of the morning verging on nausea. I hurt all over, and a friend who has undergone many procedures tells me having surgery is like being involved in a car accident. That’s the physical part. This makes sense; I’ve always liked the term “insult to the body,” which is a quasi-medical way of describing what cutting deep into living tissue—cancerous or otherwise—actually is.
But hello? What is this, guilt? Oh my, yes, Emotionally, for reasons truly far beyond my comprehension, there is a sense of shame though I have no idea what it is I am supposed to be ashamed of. Perhaps, deep down, I feel I’ve done something to deserve the illness. This is disturbing; it’s way too Catholic. If I somehow have earned this, what of my father, mother and sister, all three cancer victims? Did they too somehow commit a horrendous sin against, well, against what? This is positively strange, the remnants of a religion I thought I had shed decades ago in favor of a kinder, more Eastern philosophy. If not shame or guilt, why, then, am I so loathe to discuss this with others? Why the embarrassment of revealing that, yes, some of my cells just went bananas, replicating badly at a godawful rate, and leading to an intervention of sorts.
Here’s a fact. My emotions are running amok. One moment, I will cry for no reason other than the tears are there. Minutes later, I will be ready to discuss my brief hospital experience with scalding humor and razor wit. Then back to tears, to that breathless, hiccupping feeling I remember from being a kid when things went really, really wrong and some sort of disaster was sure to follow.
There’s been a change of sorts in my thinking, a tectonic shift that has pushed basic beliefs just far enough off-center to be troubling. Or perhaps ‘troubling’ is not the correct word; perhaps I need to find a term that illustrates that pale grey area found between disquieting and upsetting. Ah, here it is: I am not the same person I was 10 days ago. This slight brush with mortality, the French would call it an effleurage, has left me changed. I am certain of this, though if asked how I am changed, I’d find it impossible to explain, either to myself or to others.
Oh crap. This is making my head hurt.
Tuesday, October 4, 2011
Saturday, October 1—One of the things I had hoped to do after the operation was sit down and write some neat blogs, but it turns out I can’t sit. I can stand or I can lie down but nothing in between. It’s a pain in more ways than one.
So the surgery was a success, I am told, and all the bad cells—identified variously as lesions, growths or tumors according to various medical people—have been scraped away. I had arrived at the hospital just short of 1 p.m. on Friday and was allowed to go home at 9:30 pm. This was when I realized sitting was difficult. As the anesthetic wore away way and feeling returned to my nether regions, I discovered that having a catheter taped to and into my body was not the ‘somewhat unpleasant’ sensation promised by the nurse. In a word, it hurts to have a tube going from urethra to bladder.
Focusing on the happy stuff, I got to watch an episode of Bonanza and noticed that the ideal of feminine beauty has changed quit a bit. The leading actress was a short and plump brunette. Much more attention was focused on the male actors’ make-up than on the women’s. Incidentally, I can now attest that most people are right: with 100 channels to watch there’s nothing worth watching.
Seven or eight people came by my bed and asked the exact same questions, each time meticulously noting my responses on a chart. An anesthesiologist came to tell me that, should they accidentally break a few teeth while removing the tube in my throat, I would get the hospital’s sincere apology but little else. I was asked several times if I had an allergy to latex, which led to some dark, forbidden visions of nurses cavorting in rubber suits.
I discovered it’s impossible to do a NYT crossword puzzle while totally supine, even in pencil.
I found that even though truly scared, .I had managed a degree of acceptance that diminished the longer the operation was delayed.
I tried, and failed, to channel Descartes and Sartre (DesSartre?) in a vague attempt to understand why and how I should pray for relief to a Higher Power that saw it fit to fool around with my health in the first place.
I was immensely grateful for my friends. You know who you are. Thank you from the bottom of my now healthy bladder. Also, from my heart.
I wondered how, as a recovering addict, I should handle the 30 Vicodan painkillers given me be the doctor. I am deathly afraid of pills as a whole, having spent too many years under their spell.
Having not eaten in 18 hours, I dozed off and dreamed of dancing pancakes in a lake of blueberry syrup.
Sunday, October 2—I thought about the Vicodan again and realized it was really talking to me both in English and in French, and that the message was he same in either language. I asked a friend to them away. I had to battle for that thought, since my first reaction was to take a bunch and sell the remainder on the street, where each dose is worth $10.
I decided anyone prescribing a catheter should be forced to wear one for a week in order to understand what it feels like. The same thing applies to the makers of the blue paper hospital gowns that leave your butt totally exposed.
Monday, October 3—By now, I have read a number of trash novels, watched Lisa Kudrow’s The Comeback, gorged on football and gotten pretty good at the unpleasant task of changing the bag on the catheter. Have I mentioned that there are two different catheter systems? Yes; there is one that allows me to wander around the house with a plastic bag tied to my leg, and a second one, much larger, for use while I asleep. The latter looks like a whoopee cushion.
The catheter comes out tomorrow. I’ve never been hampered by something like this before and it’s been an interestingly painful experience. I remember many years ago having to wear an IV around the house in order to fight a serious infection, but this is much worse. There’s something innately humiliating about the contraption. It makes me feel ancient and useless. I am also afraid that come tomorrow, the doctor will change his mind and tell me I have to wear the damned thing for another week…
Tuesday, October 4—The catheter was removed. I can sit, type, read. Hallelujah!
I will never, ever, tell or listen to a penis joke again. Or perhaps I will. After all, I’m now entitled.