Tag 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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The most difficult question

20141027_101624Doctor-assisted dying is not a choice for ill people in my state. Nor is it an option nationally, as it is in Switzerland, Belgium, the Netherlands and several other more enlightened countries.

Many people will immediately protest: “But obviously, suicide should never be legalized or encouraged.” To which I reply, as a person with terminal cancer, “My desire to take an early exit is a completely different thing than a healthy person who commits suicide.” I want only to hasten the inevitable and painful death that already looms on my horizon; I do not seek to end a healthy life filled with possibilities.

Speaking rationally and without depression, and after a lifetime of considering the ethics of the question, I would choose physician-assisted dying in a heartbeat, knowing what I am soon to endure. But it’s not legal here.

(Warning: skip the following single paragraph if you are easily horrified.)

I have carcinosarcoma, also called Malignant Mixed Mullerian Tumor, which is so rare that there is little research being done on it, and no cure. After living with it for a year and a half and enduring major surgery and various chemotherapies, I’m now in the terminal stage of the disease. The cancer has spread throughout my abdomen and into my liver and lymph glands, but this won’t be what kills me. A large inoperable tumor is embedded low down between my intestines and is impinging painfully upon my bladder and rectum. The rapid growth of this tumor will soon pinch off these vital systems and leave me completely blocked, unable to urinate or defecate. The tumor is growing so fast that my belly already resembles that of a woman five or six months pregnant; this distension will increase swiftly in the weeks to come. Any surgical attempt to correct the blockage would only temporarily extend my life while exposing me to even more continued suffering.

Quite calmly and rationally I ask you: why is it against the law for a physician to help me make a dignified early exit with my head held high? Why should control over the end of my own life be dictated by other people’s emotional and religious scruples? An assisted death with dignity would spare me horrible suffering and would prevent my family and friends from seeing me waste away to a skeletal form with a hugely distended belly. Why do lawmakers feel so certain that dying people should have to endure their full quota of pain?

In this country it’s legal to put down a dying pet. In fact, it’s considered to be the most humane solution to ongoing pain. So why does our government compel human beings to go through the kind of suffering that we would never allow in our own cats and dogs?

Perhaps you happen to believe that human life has a sanctity that must not be tampered with. That’s fine, and I respect your religious values (although I must point out that the Bible nowhere contains the phrase “sanctity of life”). But an enlightened society should not allow followers of a single religion to enforce their religious beliefs upon others, nor should those religious tenets be encoded into the default government over all Americans. I believe that subjecting me and my family to extended suffering serves no useful governmental purpose and displays a profound lack of compassion.

I seek only peace, and a quick end to my suffering. And this is exactly what’s being denied me. I believe that the Swiss, the Belgians and the Dutch have it exactly right when it comes to compassion for the suffering: after a waiting period of several months, and a close vetting of the medical records, patients are allowed to gently and painlessly pass away in the presence of their family and friends. We need this option in the United States.

Please share this text with your legislators and your governor.

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.

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!

Aug.09 021

The silver lining

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Everyone fears cancer. It’s the bugaboo lurking in the dark corner of the room; it’s what killed Aunt Lucy, and neighbor Kim, and the bald man who used to work in your office, and the kid in your child’s class. It’s the Big C. But as a person living with cancer, I suggest that it also has a silver lining that’s too often overlooked.

A cancer diagnosis makes you reassess the important things in life. It gives you permission to step out of the rat race and redirect your energy. It shows you the love that exists on all sides. It lets you revel in the loveliness of sunbeams, or newly-fallen snow, like a hippie blissing on LSD.

My silver lining is filled with love and beauty. Cancer can make each moment very similar to a mindfulness meditation. It enhances the importance of life itself. I relish each day that passes in a way I could not imagine back in the days when I assumed that life would go on and on indefinitely. Life is good, life is sweet; and all the more so after you realize that it is finite.

I’ve spoken with several people with cancer who agree that they have also found a silver lining in their lives. So why does our culture at large not publicize the fact that there can be an up-side to a cancer diagnosis?

Our culture has forced our idea of the disease into a one-size-fits-all mold of dread and fear. But not every cancer is alike, and not every diagnosis is a death sentence. More and more people are being successfully treated, or are managing to live for a while with the disease. Cancer is no longer something to speak of with hushed tones in the next room, out of hearing of the patient (or a dread fact to conceal altogether from the patient, as they used to do in the old days).

A cancer diagnosis is a serious matter, of course, not to be laughed at. My own form of cancer generally proves fatal within one to three years, even after chemotherapy. But that doesn’t mean that I shouldn’t enjoy myself in the here and now. I believe that all cancer patients should be told that there is an up-side to be found. It’s baffling that emotional-health counseling is not yet automatically part of every cancer care package. Counseling is not considered to be an important and intrinsic part of the treatment, but is an extra that must be sought out, and paid for, by the patient.  Counselors should emphasize the fact that there CAN be a bright side to a diagnosis. This will make a huge difference to patients’ well-being.

It will be a huge step forward when each new cancer patient is shown how to uncover that silver lining and use it to best effect in his or her daily life. Good health begins with healthy attitudes!