Category Archives: Cancer

I am not Bowie

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David Bowie was one of my favorite musical gods, don’t get me wrong. And I realize that he desired to lead a quiet life with his family in New York, unharassed by paparazzi and tabloids, which is why he hid the news of his illness from cancer from all but his very nearest friends and associates. But the press release announcing his death referred to his having fought a brave battle against cancer. Both things –hiding the diagnosis as though it were shameful, and viewing cancer as a battle or war to be fought – are completely contrary to the way I’ve treated my own cancer.

I’ve blogged before about not wanting to fight a war or wage a battle. I’m a lifelong pacifist who has watched too many friends fall to this disease, which they viewed as a struggle to be fought with every weapon at hand. Cancer-as-a-battle is a trope that I have turned my back on. And I don’t believe in cancer as a shame-to-be-hidden. I have told everyone I have encountered, cheerfully and without gloom, that I will soon be gone.

Instead of brooding darkly on my inability to change my fate in the face of this inexorable disease, and instead of hoping with false optimism that I’m going to live long enough for a cure to be discovered, I have done my best to maximize the satisfactions inherent in each additional ordinary day of life. I get up each morning knowing that I will probably not leave the house due to the frigid winter air mass outside, but finding happiness in simply being able to hang out all day in my lovely little ranch with its bright colors. I have a craft project I’m finishing up, and when it’s done I’ll start another one just to keep my hands busy. I have three books that I’m currently reading. I peruse the news of the day online. I look at Facebook, but I lurk silently more than I post anything. It’s just nice to see what my friends are up to, out in the world, untrammeled by disease.

Life is good, even the impaired life I’m currently leading. It’s good to still be able to eat. In fact it’s splendid news that I’m still able to eat, because this won’t last, so I make sure to enjoy each mouthful. I relish each minute of companionship when friends drop by to see me. I look out the windows when the winter sun emerges from behind cloud cover and marvel at the white sparkling quality of the snow on the ground and branches. I savor each minute of my life right now, and this is how I prepare for my impending death. Hopefully my death will be as good as my life for the past twelve years has been.

I’ve said it before, and will say it again now: despite having cancer, and despite the past twelve years being so generally excellent in general, the last twelve months of life with cancer have certainly been the happiest of my life so far in terms of daily happiness. I urge anyone else who has a new diagnosis to consider living well as the best way to respond to the challenge.

Bowie spent his last year dreading what was going to happen to him, and preparing music, drama and videos that all spoke of death and loss. If these things reflect the darkness and fear that turned over and over in his mind each day, then I am truly sorry for him. I only wish he could have experienced some of the happiness that I’ve discovered through cancer.

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On food, and on nostalgia

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I stopped eating mid-morning on October 28.

It’s not that I dislike food. But due to the growth of an incurable tumor that’s blocking my bowels (sorry for these grisly details), food that enters my body at one end is now unable to exit at the other end. I won’t describe the long week that led up to the decision to stop eating; but I guarantee that if you had experienced that awfulness yourself, you would understand my choice.

Because there is no Death With Dignity law in my state – no option for physician-assisted-death – I am very calmly starving to death. I can drink water, but I can’t drink smoothies, shakes, etc. because my body perceives them as solid foods.

Oddly, I felt no hunger until nearly three weeks into my fast. The sensation of hunger is now quite different than it was in the pre-cancer days, when I’d get cranky if my breakfast was forty minutes late.

I perceive hunger nowadays as visual images of the foods I used to love in the long-ago days of childhood, along with memories of how delicious those foods were. The main image I see is that of my father’s soft-boiled eggs, which he would cook for my brother Jim and me on Sunday mornings. Dad readied the eggs and prepared the toast using his watch’s second hand to ensure that both parts of the meal would be ready simultaneously. I can still clearly see, smell, and even taste those memory-eggs, yolks broken and spreading out slowly over slices of golden-brown buttered toast, with fresh fruit to follow.

Because eating at this point has become purely theoretical, a harmless exercise in nostalgia, I’ve begun compiling a mental list of foods that I find pleasing, comforting, or simply delicious. Let’s begin with apples. Because I was born in upstate New York, the heritage variety Northern Spy was the first apple I ever tasted. To me, it’s how an apple ought to taste: packed with juicy flavor, both sweet and acidic at the same time.

Using Northern Spies, or the tartest substitute apples she could find, my mom baked exquisite apple pie throughout my childhood, featuring plump raisins and molasses. Later on when I worked as the baker at the old Uptown Café (1980-’81), I used her recipe. The wait staff told me that one regular Friday night customer used to drive down each week from Indianapolis just to eat my apple pie.

Another outstanding sweet childhood comfort food included homemade tapioca pudding. – But hold on! At this moment, a large number of readers out there are exclaiming “Tapioca? No way! YUCK!!!” based on their memories of the horrible “fish-egg” commercial pudding of their youth. But tapioca pudding is wonderful when made by hand and eaten warm from the stovetop; and because it’s mainly milk and egg, it’s modestly nutritious as desserts go. I always lessen the amount of sugar and use large farm eggs with orange-colored yolks for best results. Ambrosia of the gods! (Sound of lips kissing fingertips in ecstasy.)

Home fries are fabulous, especially when cooked in bacon grease, and hash browns are basically a different form of the same thing. Last year I achieved a state of perfection in my hash browns: evenly browned and without any tendency to stick to the pan. Here’s how to do it. While the frying pan is heating a 50/50 blend of cooking oil and butter, shred one to three potatoes (it’s great fun to use spuds of different colors: yellow, purple, white). Taking this moist lump between your hands, stand above the sink and squeeze out as much as possible of the starchy juice. Then spread the shredded potatoes evenly across the bottom of the hot skillet. Apply seasonings and then press flat with the spatula, frying gently. When the hash browns turn medium-brown around the edges, it’s time to lift and flip. Hash browns prepared this way will lift up in a uniform mass, much like a pancake.

Great meat foodstuffs range from humble to high. I will never forget the sandwich from an old-style Jewish deli (a real East Coast deli, not a yuppie deli with pretenses) consisting of a mountain of rosy corned beef piled between thick slabs of rye with tangy mustard. But then again, how can one say one has really lived until one has eaten pork chops complete with all the succulent crispy fat around the edges? But, more suitable for summer picnics, and situated at the opposite end of the meat spectrum, I remember mountains of Hebrew National bratwursts drenched in ketchup and mustard. Back in the day, Hebrew National’s dogs popped enticingly when you bit into them and they were far tastier than other brands like Oscar Meyer, Vienna Beef, etc. But like so many other things, they may have degraded in quality over the years, and now we’ve got a wide selection of artisanal sausage products. They’re undoubtedly made with superior meat, but still, I can’t forget those Hebrew National brats and hot dogs of my youth.

As for great vegetable dishes, I love mixed baby veggies sautéed together in butter at the opening of each summer. It’s heavenly to eat fresh cherry tomatoes warm from the sun, plucked off the vine and eaten right there in the garden. And there’s invariably a feral butternut squash vining and twining from the compost bin, the taste of which is incomparable.

For dairy dishes, give me a large, heavy portion of traditional cottage cheese/sour cream noodle kugel. Or homemade kefir, which I kept in a glass on the counter and regarded as a useful pet that lived in the kitchen. This, with a smudge of dark cherry concentrate stirred into it, was divine on a hot summer’s day. And of course I should mention The Milkshake Diet, which I spent some time on in the summer of 1984 when I was young and unemployed and living on less than two dollars a day. For breakfast: a leftover carrot or apple or banana. Nothing for lunch. Around mid-afternoon, when the hunger pains began to mount, I’d take my two bucks and go to the Indiana Sweet Shop for one of their enormous quart-size sludgy chocolate milkshakes, where the coldness of the huge drink would immediately induce a small localized headache in the center of my forehead. The caloric value of the milkshake meant that I would not be hungry again until the following morning’s breakfast. And thus, in a single meal, I had carbs, protein and fat, the three building blocks of nutrition (or so I assured myself).

I no longer eat any of these things. But I remember them with enormous fondness, and they are what is now sustaining me in these last weeks on earth. Who knows: if there is a Hereafter, I think perhaps I’ve earned a good seat at the table.

More thoughts on dying a good death

Everyone keeps telling me, “You don’t look ill! You look great!” I know they mean it as a compliment, but I DO have a belly full of cancer, and I definitely look better than I feel. In truth, I’ll probably be the best-looking corpse at the funeral home later this year.

I’m definitely on a long slow slide downward, with small upticks along the way during which I look and feel better. I spend long productive hours at home weaving, spinning, and writing, when not sidelined by drug-induced fogginess.

The palliative painkillers have certainly saved me a good deal of physical distress, but they create additional problems (some of them detailed already). As I observed in my earlier blog, dying people are offered handfuls of drugs to ease pain, to reactivate sluggish bowels, to quell anxiety, to fall asleep at night, but we generally are not offered non-drug alternatives that might help us maintain a clearer, cleaner and swifter end-of-life. Conscious death is a movement that has not yet taken hold here, so we have only the drug model to turn to.

Because Indiana is so backward, and because it has permitted medieval religious ethics to taint our laws on assisted dying, there is no death-with-dignity option for me. Because I do not want my death to be prolonged, I instead have drawn up a Do Not Resuscitate order that has been suitably witnessed and registered.  But here’s the question: in effect, don’t my painkillers constitute an artificial prolonging of life, since they keep me alive without allowing me to recognize how gravely ill I am? In ancient millennia, without pain relief, people at my point in the disease would simply curl up in a corner and refuse to eat until they shriveled up and died, but modern pain relief is now keeping me alive, and enabling me to eat small meals, since I can’t feel the majority of the pain in my belly.

Many people would at once say “That’s the benefit of modern medicine! It allows you to maintain your quality of life for weeks, even months, much longer than you would have had in a pre-industrial society.” Well, that quality-of-life issue is the sticking point. I’m still on a very low dose of prescription painkillers, and once my cancer has grown sufficiently to require higher dosages, my current quality of life will vanish as I become too groggy to write, weave, spin, or even take a stroll outside without a buddy to watch over my staggering feet. What then? And with my mind increasingly stupefied by narcotics, how can I expect to practice mindfulness meditation, self-hypnosis, or the daily attempts at maintaining a good attitude that have served me well until now?

Are these drugs really the best we can do for our dying ones? I don’t have a lot of answers, or a lot of wisdom; I’m just stumbling down a darkening passageway, commenting out loud as things slowly occur to me. But it seems to me that piles of drugs are not the best option for someone who wants to die peacefully, with dignity and intention, and without any nonsense.

Image by Chessley Sexton.
Image by Chessley Sexton.

On courage

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Because of my public blog posts about my experience with cancer, many people have told me “You’re so courageous!” and “I can’t believe how brave you are.” I always feel like a fraud when they tell me this, because I feel just as frightened as anyone else who expects to be dead before the year is up. But as my very wise mother-in-law once said to me, “Most people don’t understand what ‘courage’ really means. ‘Courage’ doesn’t mean that you have no fear. It means you do what you have to do, even though you’re afraid.”

I’m frightened not by Death itself, but by the nasty consequences leading up to the physical act of dying. More on that in a moment.

Death holds no fear for me because to me it simply represents the closure of the life cycle. It’s something that every human has done before me for a million years and more. It’s something that every creature currently walking, crawling, swimming or flying on earth will experience at the end of its life. Why be afraid of a natural process that is shared by all? Many people experience debilitating fear of things—spiders, storms, heights, etc.—that other people regard quite calmly. As a young woman I was terrified of what I imagined to be the agony of childbirth. Imagine my surprise and delight when at the age of 36 I finally went through childbirth and found it to be gentle and easy, in no way similar to any expectation I had held. It was all-natural, no drugs, and I was completely conscious the whole 24 hours of the process. It was the most magical and the most deeply profound experience of my entire life. During the birth my mind simply stepped aside and let my body take over (which it did PERFECTLY). So might not Death turn out to be similar to Birth in this way,  the body taking over from the mind and guiding it through an instinctual process that’s powerful and remarkable, with distinct stages to be experienced along the way?

Unfortunately, the modern experience of death is much like the modern default for childbirth: the idea is  simply to medicate the patient heavily and monitor the vital signs. Hospice keeps suggesting higher doses of narcotics for me, but I don’t really want to be stoned on drugs during my last weeks of life. I want to remain clear-headed as long as possible, so I can continue writing and engaging in my fiber-art activities. These things help me maintain a good quality of life and cannot be done in a drug-induced fog.

And yet the medical issues that plague me are very painful. I’ve already taken a course in mindfulness meditation for cancer patients. Are there additional alternatives to addressing pain in a non-drug manner? Unfortunately, palliative care seems to be built upon a foundation of drugs, drugs and more drugs. As I have learned the hard way, narcotics have extremely undesirable “digestive consequences.” And of course there are drugs to combat that problem as well, although they don’t work well for me.

If I could avoid all narcotics, I’d be in much better overall condition right now, and could meet my end consciously, without being a doped-up constipated zombie. As usual, I’m stuck here in Bloomington without the resources and options that exist in other states and countries. These include legal Death With Dignity; perhaps a center that offers Conscious Dying services; an alternative attitude toward death in general; and maybe a death doula to guide the process.

So, we’re back to the concept of “courage.” Although not frightened by the idea of Death, which I see as the welcome end of pain and suffering, I’m scared to death of what I’m soon about to plunge into: the loss of my body’s integrity and dignity; the humiliation of the bowels; the lack of viable non-drug options; the lack of understanding on the part of medical providers; pain followed by narcotic stupor. Scared? You bet I am.

But as there’s no alternative for me, I simply keep stumbling forward on the path I’m on. Is that real courage? I have no idea.

Accessing Cancer’s Silver Lining

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[This public presentation was delivered at The Venue on July 21, 2015.]

My name is Carrol Krause and I was diagnosed last year with an incurable cancer. All the same, I’m leading a happy life right now, thanks to the upside of cancer. The upside, what you could call the silver lining, is something that very few people talk about, even though it deserves to be much better known.

The word “cancer” is almost always a word that makes people shudder. We associate cancer with pain and suffering, and death and loss. In our minds we think of cancer patients as wracked with pain, emaciated, weak, and bald.

But many of our assumptions about cancer are stereotypes that don’t necessarily hold up. Right now I’m living with Stage Four cancer, and look at me! I still feel good, I’m not yet in pain, and I’m extremely happy to be here.

I have learned that cancer doesn’t necessarily have to be something that’s bleak and dark. It’s a question of shifting my attitude to perceive the glass as half-full instead of half-empty. Instead of lamenting the fact that I’m going to die sooner rather than later, I’m busy enjoying the time I have left, to my fullest ability.

Each cancer patient, of course, approaches their situation in a way that’s completely unique and valid and right for them. I’m in no way suggesting that my way is superior to anyone else’s. It’s simply the way that I reacted to the biggest challenge of my life. I put it forth here in hopes that it might prove helpful to other people with cancer, or people who are experiencing other serious difficulties.

I responded to my cancer diagnosis by promising myself that I would live my remaining days to the best of my ability, and that I would enjoy every moment possible. I have remained active, I exercise daily and I continue to set projects and goals for myself. Although I quit my beloved job as “Homes” journalist for the Herald-Times, I continue to write blog posts.

My approach is based on having lost my two best college friends to lung cancer. Statistically, this is nothing unusual. Most of you have already experienced the loss of a friend, associate or family member from cancer. The American Cancer Society estimates that approximately a third of all Americans now living will develop cancer in their lifetime.

But back to my friends. They were the women who knew me when I was young and fancy-free. They knew me better than anyone else on earth, other than my husband. So the way in which they lived and died could not help but make a very powerful impression on me.

One of these two friends reacted to her diagnosis with fear and anger. She basically turned her face to the wall and died. I can’t blame her, she had two small children and a career that she loved and had struggled for, and cancer came along and ruined everything. My other friend fought her cancer valiantly and chose to become a soldier in the struggle against her disease. She succeeded in winning a remission of a year and a half, against all odds, which is something she should have been happy about.

But I was horrified and grieved when she told me that she had never enjoyed a single day of that remission. Her disease hung over her head like a dark cloud. She constantly fretted about her health instead of enjoying herself. She knew it would come back and she would have to start up the fight all over again, so she lived in constant dread throughout her remission. And it DID come back, just as she had feared. She experienced increasing levels of panic until the day they took her to the hospital for the last time. When she finally accepted the fact that she was dying, and there was nothing else she could do about it, she whispered “hallelujah.” By this she meant: thank goodness I don’t have to fight any more. She never spoke again, and died soon after.

It made my heart ache to think that she never had a single joyous day with her husband during the entire time she had cancer.

Every person who loses a loved one to cancer is deeply affected by the loss. After my own diagnosis with cancer, I thought constantly about my two departed friends. And I realized I didn’t want to live and die like they did. It just isn’t my style to wrap myself in fear and anger like my first friend. And I didn’t want to become a soldier fighting ceaselessly against cancer either, like my other friend.

Here’s where we come to one of the most common stereotypes about cancer: cancer as a battle. You’ve probably noticed that the obituaries of people who die from cancer are almost always phrased as “John Doe died after a long battle with cancer,” or “Jane Doe died after bravely waging war on her cancer.” To me, this is a bad metaphor. It’s a trope. It’s a lazy habit that we automatically adopt without taking the trouble to consider alternative ways to look at cancer.

I myself tend toward pacifism. I don’t want to fight anything or anyone. Nor do I want to engage in battles or wage wars. I was a child during the Vietnam War. I lived through the war in the Gulf, the war in Afghanistan and the war in Iraq. I’ve also seen the War on Poverty, the War on Drugs, and the War on Terrorism. (Those all went down “well,” didn’t they?) I have never known a successful war in my lifetime.

For me, the word “war” has come to mean a struggle that’s impossible to win. So if I were to adopt the metaphor of waging war against my cancer, it means it means I’m committing to a hopeless fight that’s lost from the start.

Therefore, instead of battling my illness I have chosen to embrace health instead. And my doctor and I are “treating” my cancer, not waging war against it.

The more I thought about it, the more I realized that there are a number of other worn-out stereotypes and formulas clinging to the idea of cancer. For instance, many people think of cancer as something that’s intrinsically “other,” some kind of hostile being embedded within them, like in the movie “Alien.” Many cancer patients refer to their own cancers in a way that objectifies and separates them. They talk about “the cancer,” or “it,” as though it was something separate from their bodies. “The cancer isn’t responding to treatment. It requires another round of chemo.”

But my cancer isn’t an alien thing.  It’s “my” cancer. It’s part of me. It’s curled up delicately between the organs in my abdomen. It grew from the cells of my own body. I talk to it. I tell it “Hey, if you keep on growing, you’re going to kill both of us. But if you stop right now, we can both live on together for quite a while.” Even if it can’t hear me, or respond, I still regard it as part of my body. And because I claim ownership and possession of it, it helps me feel some degree of control over the situation, instead of being merely a helpless victim.

One of the most common formulaic things that many people do when they hear that someone has cancer is to ask “Why did this happen?” I hate to break it to you, but this is really a pointless question, and a waste of time, because in most cases there’s no easy answer. My cancer was not caused by an inherited genetic defect. It was caused by a random mutation which sprang up all by itself, perhaps with help from solar radiation, X-rays, the aging process, a virus, who knows? But I ate organic food for 20 years, exercised moderately every day and maintained a BMI within acceptable ranges. I had none of the known risk factors for ovarian cancer. This stuff simply happens.

Another stereotype, another assumption, is the idea that cancer is something that’s completely horrible, a disease from which you can derive no comfort whatsoever. It CAN be horrible, certainly, but it isn’t always. After all, more and more people today are living with cancer instead of dying immediately. I had major abdominal surgery followed by four or five months of pretty nasty chemotherapy.  It was not a walk in the park by any means, but I was very happy to be alive. I continued working my job with the paper, I kept on seeing my friends, and I scheduled my interviews for the period during each four-week chemo cycle when I had the most energy. And I even derived a grim satisfaction from the sight of the long scar on my belly, and the cancer port on my chest. “Hey,” I joked to my friends, “those kids are all out there getting tribal tattoos and piercings and big plugs in their earlobes, but I’ve got something in the way of body modification that’s WAY more bad-ass!”

So I started with a good attitude at the beginning of my treatment. But when I turned to the Internet for information and comfort during those first few months, everything I found there was indeed horrifying.

My particular kind of cancer is known as Malignant Mixed Mullerian Tumor, MMMT. It’s also called carcinosarcoma. Neither of those names inspires a feeling of confidence. It’s commonly referred to on the online cancer forums as “a beast” and “a monster.” It grows rapidly and there is no cure.

Ordinary ovarian cancer affects about 1.5% of all women. My cancer in turn represents about 2% of that 1.5%. There are probably fewer than 200 women with this disease alive in the US right now. And that’s not particularly comforting. Because it’s so rare, there’s very little research being done on it, because it doesn’t represent a source of profit for the pharmaceutical industry.

So I had to manufacture my own comfort somehow. I thought about my two friends and how I wanted a different path than theirs. I thought about how there is no cure for this disease, and ultimately, no hope for me. Then I began thinking about how I was alive instead of dead. And I went over in my mind all the things that make me happy, all the things that make me feel most myself.

One day I happened to be listening to the WFHB’s Golden Age Radio and I heard the old song “Accentuate the Positive, Eliminate the Negative”. Something clicked inside at the sound of those words. It became a sort of mantra for me, because it was exactly what I needed to do: eliminate the negative, and accentuate the positive. The positive was that I was still alive after almost dying before my condition was properly diagnosed.

So I resolved not to be angry or fearful. I also decided that I needed to accept the inevitable. After all, death is a necessary part of the life cycle, and to be born is to receive a death sentence. All of us learned during childhood not to sulk or get mad when we got fairly beaten in a game. We all have to lose a game sometimes, and fairness has nothing to do with it. It’s the luck of the draw, it’s the cards you happen to be dealt. We all know that our lives are finite, and this fact is simply not negotiable. So I felt it best to try to be a good sport about it all.

I have no intrinsic objection to the fact that at some point I need to get out of the way and leave the earth to other people. I have no desire to live on as a “brain in a bottle,” as one or two of my friends hope to become. To me, the idea of being stored inside a mass of circuitry, unable to walk in the sunlight or smell honeysuckle on the breeze, THAT would be a cruel death indeed, a living torture. I’m very happy that I was born, happy that I am here; I will not file an objection to having to leave when my time is up.

So I accepted the fact that my life was going to end sooner rather than later. And to my surprise, I found that the act of acceptance turned out to be extremely calming.

When I told my surgeon that I accepted whatever happened, and was not panic-stricken or fearful, he was impressed. He shook my hand and said “Congratulations! You have just skipped to the finish line of Elisabeth Kubler-Ross’s Five Stages of Dealing with Grief.” (Those stages are denial, anger, bargaining, depression, and acceptance.) So, after leading an ordinary life for 56 years, it appears that I have finally become an enlightened being!

Here’s where I come to the Silver Lining. I must have done something right, because to my surprise, and without consciously intending to do so, I find that living each day with cancer has become far more delightful. I wake up happy just to be alive. I never gripe about the weather nowadays, because whether it’s hot and humid, or cold and sleeting, I’m just happy to see it at all.

And I feel things more keenly nowadays. It’s a lot like being young again. Think of how deeply children are touched to the core by their senses and their experiences. When we were young, everything was intensely new and fresh and wonderful. We thrilled to the sensations of our young thoughts and feelings. And then we got older, and now we find that we’re bolting our food down without really tasting anything beyond the first bite. We skim the headlines instead of reading the articles in depth. We drive with cruise control instead of really paying attention to the road. We make assumptions without waiting for all the facts to come in first. And slowly, bit by bit, this is how we lose the ability to savor the little lovely things that surround us.

Well, cancer reconnected me to those little things. I find tears of joy swimming in my eyes simply when I hear the sound of an orchestra playing, or when I gaze at Monet’s paintings at the museum, or when I look at a new baby. It’s exquisite to catch the aroma of flowers in the garden, or to see a wonderful sunset. I get really excited nowadays just seeing cottonwood fluff floating through the air, backlit by the sun. To see and feel things this way again, after so many years of not really paying much attention, is incredible. It’s a gift. And this gift is definitely worth a death sentence. This is the Silver Lining of cancer.

Despite everything that’s happened to me, I still consider myself to be a very fortunate person. I love my family, I love my friends, I loved my job for eleven years. And I actually achieved my childhood dream of becoming a writer and an author! Despite having cancer, I’m very happy with the way my life has turned out.

I spoke recently with a friend about all this. Now, this friend has had a hard time in life, and she has many regrets. She’s currently working a minimum wage job in a rural area with no cultural resources and she’s saddled with massive credit card debt. She told me mournfully, “But Carrol, I’ve made a lot of mistakes. If I got cancer right now, I would be pretty depressed about my life.”

She was thinking that her glass was mostly empty, simply because she didn’t have the stereotypical markers of American “success”: a picture-perfect house, a happy family, and lots of money. Well, she’s not alone. Most people nowadays in this new economic and political environment don’t have a glass that’s brimming over. Most of us have glasses that are only partly full. And because of my cancer, my metaphorical glass is a lot less full than other people’s. My glass doesn’t have money inside it, either. But my glass does contain a lot of glowing sunsets and cottonwood fluff.

My friend has a lot more going for her than she thinks she does. She’s going to live longer than I will, for starters. She is also a gentle, kind, and compassionate soul, which in an ever more callous world is something to be very proud of. Despite having no training, she has become one of the best nature photographers I know, someone whose work is worthy of being in National Geographic. When she gets home from work each day, she takes long walks through the nearby woods and along the river, and these walks recharge her emotional batteries and refresh her spirituality. She has a beautiful dog who arrived at her door as a starving stray, and who gives her unswerving companionship, love, and comfort. She collects beautiful small objects that have meaning to her. And she has a large network of friends who care deeply about her wellbeing. She’s got a glass that’s definitely at least half-full, if not more.

My point is this: When times are hard, or when life itself is dwindling, we all need to look at our glass again, and re-envision it as half-full instead of half-empty, and then think of all the wonderful things that are represented inside it. To do this requires an adjustment of attitude, but it is well worth the time and effort. The contents of that half-glass can definitely pull you out of depression and renew your life.

It’s good for all of us to consider the many things in life that give us joy. All of us possess inner riches which have nothing to do with money or conventional markers of financial success. To have loving friends, to engage in a creative activity, to take long walks in the woods, to simply grow a garden: these things are priceless, and beyond the value of money.  These things thrill our hearts; these things reward us. These are the things that truly make us happy.

When life is stressful, or when life itself is nearing its end, most of us aren’t going to reach over to caress our checkbook and credit cards. We will reach out instead to our loved ones, we will cuddle our pets, we will admire those orange sunsets, and we will hug and kiss the people who inspire us with good feelings. These things make us human; these are the things that make us more humane. When we’re at our lowest ebb, these things will give us new inspiration and emotional strength. And this is why I am filling the remainder of my life with flowers, birds, walks, conversations, weaving and spinning, meals with loving friends.

Lastly, having cancer has taught me the importance of expressing my gratitude. I am indescribably grateful to be able to see and feel things so keenly again. I am also grateful that I’m not in worse physical condition than I am despite being Stage Four. I’m grateful to my friends and my family, and for their ceaseless love and support. I’m grateful to the many people who prayed for me.

I’m grateful to be able to walk each day, and to inhale the sweet scent of my lilies in bloom. I’m grateful to have seen one of the best firefly displays since my childhood. I’m grateful to have seen my blueberry bushes bent double to the ground with the most massive crop I can recall. And I’m grateful to all of you for coming here today.

It might seem odd, but I found that the very act of expressing gratitude in turn makes me feel even more grateful. So each day I mentally go over the many things I’m grateful for, because in some strange way, doing this nourishes my soul.

As the old man said in the Monty Python skit, “I’m not dead yet!” Despite being Stage Four, I’m still alive, and newly awakened to the joy that surrounds me. I’m avoiding the old tropes and stereotypes that only hold me back and make me feel worse. I even planted a garden this spring, not knowing whether I would make it until the harvest. But here I am!

My hope is that our outmoded stereotypes about cancer can be replaced with more wholesome attitudes that will truly benefit patients. I feel very strongly that each person who gets a cancer diagnosis should be able to obtain some form of emotional health support. And this can be done by helping new cancer patients to understand that there IS a silver lining to cancer, a beautiful one! It’d be great if each new cancer patient was shown how to focus properly on the half-full glass that they’re holding.

Even when a glass is half-empty, there’s still a good drink remaining. And even when it’s nearly gone, when you get down to those last few sips…if you maintain a good attitude, those could be the best sips of all.

Half-full or half-empty?

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Living with cancer, I can’t deny that my glass is definitely half empty, probably more than half empty. Some people in my position would fret over the fact that there’s so little left to enjoy. But I look at the water that remains at the bottom and tell myself “Hey, there are still several good sips remaining. I’ll enjoy each one of them as much as I can.” It’s simply a matter of perspective.

Another way of looking at it is to think of a coin which represents cancer. One side is pain, suffering, and death. The other side is the life that still remains to be lived, the good times with friends and family, the things that are still capable of being accomplished and enjoyed. Everyone with a serious disease—or a serious problem in life—can learn to flip that coin over and access the good side, the same way they can learn to enjoy the last sips of water left at the bottom of the glass.

This isn’t necessarily easy. I have to work on my own attitude every day, and I’ve had plenty of darkness to ponder over the course of the past thirteen or fourteen months. But over time it grows easier. The daily mental exercise of altering one’s perspective is a discipline akin to practicing scales, or meditation, or exercising.

I have an incurable rare cancer that will take my life, and I can’t help but think of that every day. But I also ask myself “What can I do to fully enjoy this unique spring day?” Right now I am doing all the things that I really want to do. I’m working on creative projects; gardening; playing guitar and singing; spending time with my family and dearest friends; and taking long walks. This is how I enjoy those sips at the bottom of the glass.

Also, I recently threw myself a party called Carrol’s Last Chance To Dance, inviting guests who for the most part represented my youth in Bloomington in the early 1980s when I worked at the original Uptown Cafe.

Photos are silent, but music was playing and people were in the groove.
Photos are silent, but wonderful music was playing and people were in the groove.

I wanted to recreate a time and place when I was young and optimistic and healthy. Old friends came from all over the nation to help me do this, traveling back to Bloomington from Las Cruces, New York City, Chapel Hill, and rural Wisconsin. One dear friend even flew from Zurich, Switzerland. People went to great effort and much expense to come to this event despite having very little advance notice.

It was indescribably wonderful to be surrounded by such love and support. There was more hugging than I’ve seen in ages, as old friends, colleagues, and ex-lovers all met again in one place, united by a single cause: to dance and have fun with me. I danced for three hours running, just as if I were young again. Indeed, with the sense of vitality and happiness that filled me, it felt as though I could live (and dance) forever. Not bad for a 56-year-old woman with a fatal disease; although some people undoubtedly wondered how I could party like this, knowing what lies in store. But that’s exactly why I did it! I want to make the most of my time on earth, to flip that dark coin over to its reverse, to sip from that sweet drink at the bottom of the glass.

My glass is half-full, not half-empty, and the top of my coin is bright and shining. Cancer has taught me that we all need to create and share as much joy and laughter as we possibly can. So if my health holds, perhaps I’ll throw another dance party.

🙂

Hope: that feathery thing

Three weeks ago my oncologist basically told me, “you can repeat the carboplatin chemo that you had last year; you can search for a clinical trial for your rare cancer; you can try several other drugs” (which he seemed dubious about); “or you can do nothing.” I blogged about how I was resigned to my fate and would accept whatever happened. But then I got a second opinion.

The second doctor is a colleague of the first. The two doctors’ expertise overlaps slightly, like a Venn diagram, but their opinions  could not have been more different. Dr. #1 is The Great Surgeon while Dr. #2 is The Great Clinical Researcher. Although Dr. #2 did not tell me that my cancer can be cured, she did tell me that a different chemo has shown promise in either slowing, halting, or slightly shrinking cancers like mine. Although I had already resolved to die with as much grace as I could summon, I gladly accepted her suggestion that I try this new chemo once a month for three months, for it supposedly has far fewer nasty side-effects than last year’s treatment. At the end of three months (assuming I’m still alive) we’ll conduct another CT scan to see if the new drug is doing anything.

This experience with the two doctors giving different advice is a huge lesson to me. Patients need to be proactive and not just passively receive the wisdom from our physicians. We consult Consumer Reports before we invest in new cars or washer-dryers. Likewise, we also need to do our homework while navigating difficult medical challenges. I only wish I’d asked for a second opinion after speaking with Dr. #1 three weeks ago, because time is of the essence with fast-growing cancers like mine. But it never occurred to me that his advice would differ so significantly from that of Dr. #2.

In the meantime, I continue to feel good, apart from a heaviness low down inside my abdomen. In fact, although I suffered for a decade from an obscure autoimmune condition that blighted my health, last year’s chemo treatment seems to have totally wiped out the autoimmune problem. This means that I feel vibrant and healthy for the first time in ten years. In fact, other than feeling the cancer inside me, and knowing that it has also spread to my liver, I feel completely strong and capable, and last weekend I danced for three hours straight at a party. (More on that, perhaps, in a future blog.) People keep asking me, looking perplexed, “Are you sure you have cancer?” — “I do,” I tell them. “I have seen it repeatedly on the scans and have read the CT reports, and it feels like a heavy lump inside me.” But that said, I have no complaints and consider myself a very lucky person to be alive today.

I understand that the new drug might not do anything at all, but it makes sense to me to try. Tomorrow I start the new treatment….wish me luck!

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