Tag Archives: carcinosarcoma

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.

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Carpe diem

IMG_2595Despite having a terminal disease, I’ve experienced some of the greatest happiness of my life during the past year. I feel as though I am young again, with each day filled with keenly-felt wonder and enjoyment.

I made a conscious decision at the beginning of my experience with cancer not to let my diagnosis get me down. Although I can’t change what has happened to me, I CAN choose how I respond to the situation.

Statistically, I’m likely to live one to three years with this carcinosarcoma, half of which is already gone. If I have only X number of months remaining, then it makes sense to enhance my experience of those remaining months as best I can. There’s no point sinking into depression and wasting the time that’s left, or harboring thoughts like “this is SO unfair” or “my life is ruined”.

Instead, I do everything I can to enhance my enjoyment of each day. I traveled to Italy for a last adventure, and I regularly spend time with my closest friends and with my family. Projects keep me busy and engaged, and I’ve been enjoying a great burst of expressive creativity.  

Each day, as I’ve done throughout my life, I record thoughts in my daily journal. Each day I spend half an hour or so in the yard and garden, examining plants, pulling weeds, looking at the sky, and experiencing the sun and breeze and humidity. Each day I walk for 30 to 60 minutes, either on the treadmill if weather is bad, or outside if weather is good. Lately I’ve been identifying The Most Beautiful Thing of each day, or sometimes The Coolest Thing I’ve seen during the day.

For example, The Most Beautiful Thing two days ago was a Siberian iris bud that was ready to open the following day. It was tightly furled like a little umbrella, deep purple, beautifully delineated, and with a most perfect spiral line circling down from its velvety top point. The Most Beautiful Thing the day before that was a gigantic old catalpa tree with a massive trunk, a perfect shape, and covered with white orchid-like flowers. The Coolest Thing this morning was spotting a mass of tiny gnats all dancing in a transparent cloud that glowed as it was backlit by the sun, and then noticing as I rode in the car’s passenger seat that countless similar glowing clouds of gnats were hanging suspended above lawns, like shimmering ghostly globules, all the way between May’s Greenhouse and the city to the north.

Another Cool Thing: spotted just after sunset, anticrepuscular rays in the sky caused by the vanished sun shining past clouds on the western horizon.
Another Cool Thing spotted just after sunset. Anticrepuscular rays in the sky are caused by the vanished sun shining through clouds on the western horizon.

Lately I’ve been counting rabbits on my walks outside. The city always has an explosion of its rabbit population at this time of year, and for the past two years I’ve counted all the rabbits I’ve passed during my daily perambulations. I take care to follow a circular route so I don’t count any rabbits twice by accident. Last year’s one-day record was 19 rabbits, but yesterday I saw 20! Bad news for gardeners, but fun for me. And it’s not even really about the rabbits themselves. Instead, the act of looking for rabbits enables me to see things that I normally might overlook, like landscaping in a side yard, trees in flower, flagstone hardscaping, deer flitting across lawns, birdfeeders, etc. And by looking at these things I often spot The Most Beautiful Thing Of The Day, or The Coolest Thing. And doing this has helped enhance my life enormously.

We can’t SEE if we aren’t looking. And we can’t FEEL if we don’t open ourselves up to experiences.

As Elmer Fudd famously said, “Shhhh! I’m hunting wabbits.”

elmer fudd