|
||
BY JON GARINN | MAY 19, 2012
I'm a big fan of filmmaker Ken Burns, so I was eager to see a new profile of him in The Atlantic. His films on The Civil War, Baseball and Jazz have not only provided a window into America's history for generations of viewers but also introduced the "Ken Burns effect" to documentary filmmaking.
When asked about his insights into storytelling, he revealed a deeply personal motivation: his childhood experience of his mother's cancer.
"I don't know why I tell stories about history. I mean there are kind of classic, dime-store Ken Burns 'wolf at the door' things. My mother had cancer all of my life. She died when I was 11 and there wasn't a moment from when I was aware, 2 and a half, 3, that there was something dreadfully wrong in my life. It might be that what I'm engaged in in a historical pursuit is a thinly or perhaps thickly disguised waking of the dead. That I try to make Abraham Lincoln and Jackie Robinson and Louis Armstrong come alive and it may be very obvious and very close to home who I'm actually trying to wake up."
He goes deeper still. "We have to keep the wolf from the door. We tell stories to continue ourselves. We all think an exception is going to be made in our case and we're going to live forever. Being a human is actually arriving tat the understanding that that's not going to be. Story is there to just remind us that it's just OK."
Burns' reflections dovetail with insights from Tani Bahti, a hospice nurse we interviewed for a story on caring for a loved one who has decided to end treatment. Look for it in our summer issue.
RELATED POSTS
COMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | MAY 7, 2012
Although my time at the 37th annual congress of the Oncology Nursing Society was brief, I was able to attend an excellent presentation on PARP inhibitors by Julie Eggert, PhD, RN, of Clemson University in South Carolina and Lori Williams, PhD, RN, of the M.D. Anderson Cancer Center in Houston. I'm no expert on molecular biology, but I'll try to interpret what I heard. Be warned: we're about to enter a microscopic world with a language all its own. Navigating it will require a laser-like focus.
In the beginning...
The story of cancer begins with damage to DNA. Repair the damaged DNA and you stop cancer's growth. It's a simple enough premise. But the devil is in the details.
Hooray for the 1 percent!
DNA (Deoxyribonucleic Acid) is the genetic code in every human cell. And we've got a lot of it: If you were to stretch out the DNA in a single human cell, it would measure nearly 10 feet in length! Considering we have about 100 trillion cells, we've got enough DNA to reach the moon 6,000 times. With so much DNA in our systems, you might think we have a lot that makes us uniquely who we are. But 99 percent of human DNA is exactly alike in everyone. Only 1 percent is unique. Take that, Occupy movement!
The only way we can store so much DNA in our cells is with the help of chromosomes, which act as super-efficient storage units. Before going into "storage," the DNA wraps itself tightly around proteins. These proteins form one of 46 chromosomes in every human cell.
Our cells receive their instructions on what to do from our DNA molecules. For example, our DNA will tell a cell whether it should help us see or make our hearts beat.
The DNA of DNA
To understand how DNA works, you have to know how it's built. Imagine that you have a ladder that is cut in half. It's basically useless, unless you can bond the two sides together. That requires not only a powerful bond, but also a proper alignment.
Visualize DNA as a twisted ladder (scientists call it a "double helix"), with sides (scientists call them "strands") that are made up of sugars and phosphates, and rungs that are made of one of four chemicals: adenine (A), guanine (G), cytosine (C) and thymine (T). The chemical "bases" on one side of the ladder are bonded to the chemical bases on the other side with the help of hydrogen (creating that powerful bond I referred to earlier). But that bond will only work when the chemical bases are combined in certain ways (that proper alignment I spoke about). So, "A" must always bond with "T" and "C" must always bond with "G".
The rungs of our DNA ladder form strings of "letters" that, in turn, form words and sentences--our genetic code or blueprint. Our genes tell our cells to make other molecules (proteins) that enable our cells to perform special functions, such as working with other groups of cells to help us see or make our hearts beat. Although we have about 25,000 genes, only a few contain instructions for helping us see or making our hearts beat.
Handle with care!
DNA is fragile, meaning it's easily susceptible to damage. Consider that we typically experience more than 10,000 spontaneous single strand breaks to our DNA every day. What causes our unstable DNA to become damaged? Most frequently, exposure to environmental agents, such as chemicals or inflammation.
PARP is a protein needed by cells to repair damage, so when that protein is blocked, damage repair is inhibited, resulting in cell death. Some cancer cells are dependent on PARP, particularly those with BRCA or "BRCA-like" gene mutations. Cancers sensitive to PARP inhibition include breast, prostate, squamous cell lung, colorectal, ovarian and melanoma. PARP inhibitors may also be used to prevent repair of damage from chemotherapy or radiation treatments.
Researchers are still learning about how PARP inhibitors work and whether they are more effective alone or in combination with other targeted agents. Results of early trials seem to support the latter. In fact, PARP inhibitors suffered some disappointing trials in breast cancer last year, but research continues, including in ovarian cancer. As is the case with most promising new therapies, scientists are recognizing that they may be effective in specific patients rather than in entire populations.
Because PARP inhibitors are still being studied, none are currently available except through a clinical trial. As is the case with most cancer research, stay tuned.
Your homework assignment
If you've managed to make your way to the end of class, you might consider reading our "Targeting the Triple Threat" feature from our Fall 2009 issue.
COMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | MAY 4, 2012
What do you get when you fill a hotel ballroom with hundreds of oncology nurses, dozens of admiring supporters, a Dixieland jazz band, an inspirational Hollywood legend, and several grateful patients on hand to pay tribute?
Something indescribable.
To call it a celebration of the oncology nursing profession doesn't quite capture the moment. CURE's sixth annual Extraordinary Healers awards event was certainly that and more. To say it was a show of appreciation for some of nursing's finest is an understatement. To describe it as an opportunity for older generations of nurses to hear from an actress whose groundbreaking role inspired them to consider nursing, and for younger generations who may never have known her work to understand why she is so beloved by nurses, falls short of the moment.
I wish there was a way to convey the emotion of last night's event, but words fail me. It is perhaps ironic that someone who devotes his professional life to words would be inadequate to the task of communicating what it was like to be present at that moment. I've long admired the many fine nurses I've met over the years, but last night's event gave me a new appreciation for them. These selfless, dedicated, compassionate professionals are fiercely determined to bring healing and hope to everyone they encounter throughout the continuum of care, even when facing the most difficult circumstances.
But don't call them heroes. They'll say they're just doing their jobs. If you dare to compare them to angels, they'll quickly change the subject. It's really no surprise that nursing continues to be one of the most trusted professions in America. As the backbone of our healthcare system, nurses deserve our respect, admiration and thanks. In some small way, CURE tried to convey that at last night's event. I wish I could describe what it was like to be there, but words are inadequate to the task.
If you're an oncology nurse, consider joining us at next year's event in Washington, DC. If you're a patient, caregiver or survivor, consider nominating your oncology nurse for the Extraordinary Healer award. Regardless of who you are, take time to show appreciation for nurses everywhere. They deserve it.
RELATED POSTSCOMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | MAY 2, 2012
I'm preparing to leave Dallas for New Orleans and the 37th annual congress of the Oncology Nursing Society. Since this will be my first time to attend the congress, I'm eager to greet our many oncology nurse readers and receive their feedback. I'm also excited to welcome the finalists in our Extraordinary Healer contest, as well as those who nominated them for this national honor.
I've heard from several readers how difficult it is to identify a single nurse who made a difference in their treatment. It takes a team, they say, and an effective team has few, if any, standout players. While I appreciate the sentiment, I also know there are always star performers. We hope to highlight some of their work tomorrow night at the grand event, hosted by another star performer: Diahnne Carroll.
I'm old enough to remember being inspired by her Emmy-nominated and Golden Globe-winning performance in Julia, a groundbreaking television series, in which she played nurse Julia Baker. She could not have known in 1968 that less than three decades later--after successful turns in movies and on Broadway--she would rely on the comforting care of oncology nurses to deal with a diagnosis of and treatment for breast cancer. Since then, she has become a powerful advocate for early detection and prevention of cancer, encouraging women to get regular mammograms.
I'll have the privilege of meeting Ms. Carroll tomorrow night, as well as the Extraordinary Healers she will honor. I can't wait!
Then, on Friday, I'll attend a presentation on PARP inhibitors, therapies used to treat breast, prostate, lung, colorectal, ovarian and skin cancers. Stay tuned to our blogs for the latest from the annual congress!
RELATED POSTSCOMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | APRIL 17, 2012
Today is my 49th birthday, but that's not what kept me from falling back to sleep at 5 a.m. It was the same fear that many have: the fear of dying before I'm ready to go. There are so many things I want to do. I need time to get my affairs in order; mend a few relationships; fulfill some long-held dreams.
As we get older, we seem to spend more time considering our mortality. How will death come? Peacefully and painlessly, as it did to my paternal grandmother? She lived a long life and died in her sleep. Will death come violently and suddenly, as it did to my father? He died choking on his own blood. Will death come gradually and mercifully, as it did to my maternal grandmother? Her slow, steady decline was capped by endless hours at the hospital.
It is perhaps an occupational hazard that, as editor of a cancer magazine, I often lie awake wondering if cancer will come my way. One out of every two men in America will get cancer in his lifetime. Will it be me or the guy I'm sitting next to on the bus? Maybe he's already had cancer. So will it be me or the security guard in the lobby of our building? It's a maddening game of chance. One that sometimes keeps me awake.
I haven't improved my odds. I'm overweight. I don't exercise. I enjoy cocktails before dinner. I drink wine at meals and beer during yardwork. I was exposed to second-hand smoke throughout my childhood. I had terrible sunburns during my youth. I was exposed to asbestos on a construction project in college. Is my immune system strong enough to do what it was designed to do? Or is my body a ticking timebomb? There are simply too many variables to know whether I will be "the one." People who've had cancer aren't alone in fearing its return visit. Cancer is an unwelcome guest in every home.
As I celebrate another year of life, one thing is clear: I'm grateful to be a part of the CURE family. If a cancer experience is in my future, I'll draw inspiration from the many patients and survivors I've encountered who were absolutely determined to live as best as they could.
RELATED POSTSCOMMENTS (1) |
PRINT |
SUBSCRIBE
BY JON GARINN | JANUARY 2, 2012
While preparing a supplement on side effects, I learned about something that many patients and caregivers are aware of but few people know how to manage: co-toxicities. The supportive care medications that are used to manage side effects of cancer treatment, such as insomnia and nausea or vomiting, also have side effects.
Nausea and Vomiting
Drugs given to prevent nausea and vomiting frequently have side effects, ranging from sleepiness and headache to appetite stimulation and diarrhea. Yet uncontrolled nausea and vomiting can interfere with a patient's ability to receive cancer treatment by causing chemical changes in the body, loss of appetite, dehydration, physical and mental difficulties, a torn esophagus, broken bones and the reopening of surgical wounds. If patients do find they can't stomach anti-emetics, what alternative therapies are there? We'll discuss this and more in our special supplement, but we're always interested in hearing from you, as well.
Mouth Sores
Because fast-growing mucosa cells are particularly sensitive to chemotherapy, patients often develop mouth problems, ranging from dryness to ulcers. Yet preventive mouthwashes can adversely affect taste and stain teeth, and some analgesic and anesthetic treatments can lead to throat irritation, headache and fever. We'll discuss how choosing certain foods and practicing good oral hygiene can make eating easier, but we'd also welcome your advice.
Diarrhea
Damage to the digestive tract resulting from chemotherapy can lead to diarrhea, making antidiarrheal therapy necessary. Mild to moderate fluid intake can aid in rehydration. But when diarrhea needs to be controlled with medications such as Lomotil or Imodium, patients can sometimes experience nervousness or drowsiness. We'll discuss nonmedical management and prevention of diarrhea, such as diet and hydration products, but we'd also like to know how you manage this side-effect.
Constipation
Patients receiving certain painkillers or chemotherapy drugs may experience constipation. Although consuming adequate fluids and fruits can stimulate bowel function, many patients must take a stimulant laxative to prevent and treat constipation, with side effects ranging from stomach upset and nausea to bloating and cramping. We'll suggest ways, such as diet and exercise, to maintain normal bowel functioning that will minimize these effects, but we'd also like to learn how you handle this common problem.
Neutropenia, Thrombocytopenia and Anemia Patients being treated for cancer can experience low white blood counts (neutropenia), low platelet counts (thrombocytopenia) or low red blood counts (anemia), requiring drug interventions with side effects ranging from nausea, fever and bone pain to flushing, hypotension and hypertension. We'll discuss possible preventive measures, such as taking acetaminophen or a non-steroidal analgesic for bone pain; avoiding drugs that can affect the functioning of platelets, such as aspirin, ibuprofen and naprosyn; and early initiation of therapies at the first signs of anemia.
Fatigue
The most prevalent side effect of cancer treatment is fatigue. Medication to treat pain, depression, vomiting, seizures and other problems related to cancer can cause fatigue, as well as radiation therapy. But because fatigue is a complex condition with possible biological, psychological or behavioral causes, most of the available treatments are for treating symptoms rather than underlying causes. We'll discuss nonmedical management strategies, including diet and exercise, sleep and activity patterns, stress reduction and complementary therapies. Still, we'd like to hear from you.
Neuropathy
This is a side effect of several chemotherapy drugs that is challenging to treat, with some drugs like gabapentin able to provide relief in some situations. We'll explore this side effect in detail, but we would welcome your management strategies, as well.
So, share your side-effects strategies with us and we'll share them with our fans, followers and friends. And look for our Managing Side Effects supplement, coming soon!
COMMENTS (3) |
PRINT |
SUBSCRIBE
BY JON GARINN | OCTOBER 6, 2011
Amid all the tributes making their way around the Internet, I submit my own humble homage to Apple founder Steve Jobs. Everything that could be said about his impact on technology has or will be said by others far more erudite than me, so instead I'll honor him as someone who lived a robust life as a cancer survivor.
Jobs lived for seven years after learning he had an islet cell neuroendocrine tumor in his pancreas. It's considered a rare form of pancreatic cancer because it accounts for only about 200 to 1,000 of more than 42,000 pancreatic cancers diagnosed each year, according to the American Society of Clinical Oncology. It's also more treatable than the common form of the disease.
It has been speculated that, around the time of his diagnosis, the fiercely private Jobs underwent a Whipple procedure, in which parts of the pancreas, small intestine and stomach are removed and the digestive system is reconstructed. Then, two years ago, he received a liver transplant. Keep in mind that during this time he oversaw the global expansion of the iPod and introduced the iPhone and iPad.
Despite his increasingly frail health, he continued to apply his energy to his life's passions and, in so doing, showed the world that you can live productively with this disease.
Within the last six months, two new drugs, Afinitor and Sutent, were approved by the FDA to treat late-stage neuroendocrine tumors, options that were unavailable to Jobs at the time of his diagnosis.
It's hard to know what difference such treatments would have made for Jobs. What is certain is that he made the most of his life after cancer, and the difference he made in all of our lives will be known for generations to come.
RELATED POSTSCOMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | SEPTEMBER 26, 2011
I learned over the weekend about the death of Ruthie Leming, a 42-year-old schoolteacher in St. Francisville, LA. Two years ago, she received a diagnosis of metastatic lung cancer. Because she had never smoked, by the time the cancer became detectable it had already spread to her brain, bones and adrenal gland.
I never met Ruthie but, at one time, I worked with her brother, the conservative commentator and blogger Rod Dreher. One thing I've long admired about Rod is his searing honesty and his intense pursuit of meaning. As he blogged about his sister's death and her community's support throughout her ordeal, Rod delved deeper into meaning than I could have imagined. I commend his blogs about Ruthie's death, beginning here. When you finish the entry, scroll down past hundreds of comments to advance to the next entry, and so on. But be prepared. Get some tissue and settle into a quiet place. You'll be deeply moved by the enormity of his heart.
After Ruthie's diagnosis, Rod blogged extensively about his sister, and she told him how much it meant to her that so many people read about her and prayed for her. In death, as in life, Rod has become his sister's keeper, albeit through the art of storytelling.
Believe me, you won't regret spending time getting to know Ruthie. You may not agree with Rod's politics, but you can't deny the depth of devotion to his sister. I was so profoundly touched that I even reached out to my own sister, long estranged, and I am eager to hear her response.
The Little Way of Love
Throughout his posts, Rod goes to great lengths to compare his sister to St. Thérèse of Lisieux, a 19th-century Carmelite nun known for the depth and simplicity of her spirituality. As a cloistered nun, Thérèse didn't have the opportunity to perform great deeds, so she built her spirituality on performing small deeds of virtue with a heart full of love. Ruthie was like St. Thérèse, Rod says, because "Thérèse loved simplicity, and disdained the false, flowery piety that folks ladled like syrup over the lives of the saints." His down-to-earth sister's life of ordinary goodness was made extraordinary by her deeds of pure love, which were so often an inspiration to others.
I had the opportunity to learn about Thérèse during an internship I did at a church under her patronage. In the same way that I've come to know about Ruthie because of what others have said about her, I came to know Thérèse through her own words and the words of others. It strikes me that what distinguishes people like Thérèse of Lisieux and Ruthie Leming isn't so much their purity or perfection but their utter authenticity. Both women were authentically human. In her lifetime, Thérèse believed in keeping it real. After her death, her family took control of her image and promoted something entirely different to the world: an abstract ideal of pure love rather than an imperfect person in need of love.
Imperfect Love
Psychologist Eugene Kennedy, speaking after the 9/11 attacks, said people who are perfect have no need for love, "for there would be no gaps for its electrical charge to spin."
"There would be no work for love to do," Kennedy continued, "no growth to nourish, no faults to forgive, no wounds to heal or, worst of all, no tears to dry. Nor would there be any need for faith or hope. For making ourselves vulnerable through the investments of ourselves--and these investments can only be made in the currency of imperfection, these investments we make in a hundred barely noticeable ways every day--in believing and in trusting others."
Rod describes Ruthie as someone who made herself vulnerable by investing herself in the lives of others, which may account for the enormous outpouring of love and support for her family from her community and, through Rod's blog, from around the world.
RELATED POSTSCOMMENTS (0) |
PRINT |
SUBSCRIBE
BY JON GARINN | SEPTEMBER 21, 2011
When we asked our readers how they use words to describe cancer, we saw a lively discussion emerge on our Facebook page. Language not only provides a framework for understanding our reality, it also helps shape our reality. One thing is certain: words matter. That's why we endlessly debate about labels and titles and descriptors. What makes a person heroic? When does survivorship begin? Why is someone an inspiration? How should we talk about cancer?
The Man in the Mirror
I remember the first time I referred to myself as a man. Not as a male, mind you, but as a man--a grownup; an adult. I was in my early 20s. Prior to that, I had been a child or a boy or a teenager or an adolescent or a young adult or a guy. I saw a headline in the local newspaper about someone my age who was involved in a motorcycle accident. It read, "Man Injured when Motorcycle Collides with Truck." I remember thinking it felt odd to refer to someone my age as a man, without the modifier "young." I decided to try it on myself. It changed my self-perception. I walked a little taller; felt a little more confident.
Identity Crisis
In 2009, researchers at the University of Connecticut asked 168 young to middle-aged adults who had previously experienced cancer about which self-identifier best reflected their post-cancer reality. Eighty-three percent of respondents endorsed survivor identity, 81 percent identified themselves as a "person who has had cancer," 58 percent called themselves a "patient," and 18 percent thought of themselves as a "victim." See the study here.
The researchers found that "survivor identity correlated with better psychological well-being and post-traumatic growth, victim identity with poorer well-being; neither identifying as a patient nor a person with cancer was related to well-being." They concluded that the way cancer patients identified themselves would directly impact their interactions with healthcare providers and influence health behavior changes.
Invasion of the Body Snatchers
In a recent New York Times editorial, author Daniel Menaker discussed the pros and cons of referring to the cancer experience in military terms. If cancer is a foe that must be vanquished, does that mean that "those who die are by definition, at least figuratively, losers?" When Menaker confers with his cancer team, "it seems more calming, less victimizing, to think of the disease as a problem, not an enemy." Yet, he wrote, he also understands why some patients find it "emotionally useful to view cancer as an enemy," because doing so can motivate them and help them feel less frightened, more focused.
What's in a Name
In my work at CURE, I generally try to avoid what writer Susan Sontag referred to as "the metaphorization of illness." She believed illness metaphors stigmatized the people who have the disease, further harming them. Essentially, she argued, using military language to describe the cancer experience only serves to reduce a complex situation to a simple battle with clear sides. And such a framework for meaning is actually less engaging, not more.
How do you see yourself? What language do you use to describe your cancer experience? Do you find it helpful to use combat metaphors?
RELATED POSTSCOMMENTS (1) |
PRINT |
SUBSCRIBE
BY JON GARINN | SEPTEMBER 13, 2011
In a broadcast interview this morning, Rep. Michele Bachmann (R-Minn.) suggested the human papillomavirus (HPV) vaccine, mandated by Texas Gov. Rick Perry in 2007, caused a girl to suffer "mental retardation."
Talking with Matt Lauer on NBC's Today show, Bachmann said, "A mother...told me that her little daughter took that vaccine, that injection, and she suffered from mental retardation thereafter. The mother was crying... This is the very real concern and people have to draw their own conclusions."
In 2007, Perry signed an executive order requiring sixth-grade girls to be inoculated against HPV, which is the leading cause of cervical cancer. He later said it was a mistake to act unilaterally, and the executive order was eventually overturned by the Texas Legislature.
Let's Be Clear
There is no evidence that the FDA-approved HPV vaccines (there are two, Cervarix and Gardasil) cause mental retardation. In fact, the Centers for Disease Control reports that both vaccines have been tested in thousands of people around the world and no serious side effects have been reported. Side effects of approved drugs continue to be monitored and reported, and if the side effects are great or frequent enough, a drug will be pulled from the market. The few anecdotal stories of serious side effects from these vaccines have not been validated.
Just the Facts, Ma'am
• HPV is the main cause of cervical cancer in women
• About 11,000 new cervical cancer cases are diagnosed each year in the U.S.
• About 4,000 American women die each year from cervical cancer
• Both vaccines are very effective against HPV types 16 and 18, which cause most cervical cancers
• Michelle Bachmann is a tax attorney, not a medical professional
As the campaign rhetoric continues to heat up, it's important to separate fact from fiction. HPV-related cancers are expected to rise significantly in the next decade, according to the National Cancer Institute. We need to develop a public health response that's based on actual science, not hysteria and hyperbole.
RELATED POSTSCOMMENTS (3) |
PRINT |
SUBSCRIBE
