Parents going through chemo often struggle to explain their alopecia (hair loss) to their young children. The rhyming verse in Nowhere Hair offers a healing conversation-starter that is both whimsical and profound.
Writers choose words and phrases with care. In all my years of writing, only once or twice have I repeated a sentence word-for-word in a single essay. So when surgeon Nuland did so in How We Die, I took notice.
Few questions evoke physicians' discomfort like “Doctor, how much time do I have?”In oncology it's a common question that comes with the territory, forcing clinicians and patients to grapple with issues of trust, hope, uncertainty, disappointment, and grief....
Until recently, if I saw someone who had lost excess weight, without hesitation I'd say something positive like, "Wow, you look terrific!"
When young parents are dying, they face the loss of everything they know and hold dear. Arguably their greatest pain is losing the chance to raise their child(ren). To help such parents find hope in desperate times, I offer a suggestion:
A study designed to determine risks associated with hospitalization and delirium in patients with Alzheimer's Disease (AD) contains important lessons for Healthy Survivors.
An Oncology Times article caught my eye: "Relieving Major Depression in Cancer Patients: Specific 'Biopsychosocial' Method Found Useful." It reviewed a study that addressed the impact of an intervention developed to treat depression, reduce stress and help patients develop coping strategies.
James C. Salwitz, MD doesn't use the term Healthy Survivor. Still, the story he tells offers a name and face to the idea that patients in difficult circumstances can find Happiness in a Storm.
A blogger commented on part I of this series, "One friend, after five years of grief and going to therapy is still grieving, and it is hard for me to deal with what to say to her." Is this normal?
In my January 21st post, I shared a vignette that illustrates the notion that what you hope for affects whether your hope helps or hurts you.
Now let's look at the challenge of coping with the evaluation of a worrisome symptom. What can Healthy Survivors hope for?
In yesterday's post, I shared my reaction to a rant found on a cancer-related listserv. I explained my concerns regarding such expressions of anger, disappointment and frustration.
So what are Healthy Survivors to do if, for example, they learn they had not received important information about aftereffects of treatments they received?
A recent thread on a cancer listserv included the rants of listserv members who were angry they hadn't been better warned about the possibility of developing aftereffects. This is a problem.
The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?
Fear that cancer will return is a near-universal fear of patients whose cancer is in remission. This fear can interfere with getting good care and/or living fully. For Healthy Survivors striving to calm this fear, a 6-minute video may help.
An interesting press release from the University of Texas supports my long-standing contention that it is better to ask a patient, "How are things?" than to ask "How are you?"
I'd like to pass along some wise, low-tech advice for dealing with a family health crisis or family member's chronic illness: Be quick to forgive.
While the furor over PSA testing plays out in the media, my sympathies lie with men newly diagnosed with prostate cancer . At the end of the day, the patient has to decide what to do.
Perhaps most troubling to me of Hope or Letting Go, was Dr. Youn's question about whether the patient and his wife should be given a chance to say good-bye.
In my last post, Hope or Letting Go, I shared the story of a physician, Dr. Youn, still troubled by an incident that happened ten years ago. Since reading it, I've been bothered by some of the questions he posed.
For example, Dr. Youn asked if concern for the needs of the patient's loved ones ever take precedence over the patients' needs?
Sometimes it helps everyone if the most basic challenges of a situation are clarified. So today I'll distill the essential challenges that people face after completion of cancer treatment:
Walking down the jetway, I hear a woman's voice behind me, "Umm, excuse me. May I ask if you work in the sun?"
The man behind me answers, "Huh? I work inside, but I play outdoor sports."
With a micro-chuckle of embarrassment, the woman says, "Gosh, I hope you don't think I'm crazy or overstepping my bounds, but were you aware of the black spot on your earlobe?
We are not born knowing how to become Healthy Survivors. We aren't taught in school how to get good care and live as fully as possible when living with, through and beyond cancer or other serious illness. I wish we were.
If a picture is worth a thousand words, this 17-minute video by Eric Slade Productions is worth at least an undecillion (1 followed by 36 zeros).
My last post offered tips for recognizing stigma. My key message was that Healthy Survivors have a right to choose whether or not they advocate to destigmatize the disease that has become part of their life.
Today I'll tackle the challenge of dealing with this stigma.
In my April 11th post, I refer to an article in Women's Day titled, "The Stigma of Illness."
Stigma can keep patients from becoming Healthy Survivors, so let's talk about dealing with stigma in healthy ways.
The Dallas Morning News ran a story on the front page of today's Health section entitled, What Not to Say to a Cancer Patient. For the article, special contributor Melissa T. Schultz interviewed me, two other survivors (scroll through photographs) and Dr. Walter Baile of University of Texas MD Anderson Cancer Center (MDACC).
Obesity is linked to many serious medical conditions. Yet many physicians refrain from talking about "the elephant in the room" for fear of offending patients.
When symptoms or signs are not dramatic, patients often find it stressful to decide whether or not to call the doctor or go straight to the emergency room. As a patient, I found it more stressful when a new problem put me in what I call "the gray zone" than when a sign or symptom was clearly a serious problem demanding immediate attention.
What's a Healthy Survivor to do?
This is a painful topic for me to address,. But I will, since it is about a challenge for some patients:
What can Healthy Survivors do if mistreated?
On my January 28th post, Lori commented about one's obligations to survivors whose belief in the power of positive thinking precludes their getting effective therapies.
In my last post I promised to address whether linking health to personal virtue is "good" or "bad" medicine. Followers of this blog know what I'm going to say:
A NYTimes op-ed piece entitled A Fighting Spirit Won't Save Your Life concludes, "Linking health to personal virtue and vice not only is bad science, it’s bad medicine."
Theresa Brown is a nurse who appreciates the healing power of patients' humor. In a December 1, 2010 article for the NYTimes' Well blog, Brown shares a few anecdotes that illustrate how she is often amused by patients' stories that others might consider offensive.
If you're sick, you need people to empathize with you, right? Maybe not.
Healthy Survivors (1) get good care and (2) live as fully as possible. The second criteria can pose quite a challenge in the face of losses, especially if you feel you are no longer at your best.
Jean Baruch is a remarkable nurse who understands how to help children with serious illness become Healthy Survivors.
I chose internal medicine as a career because I love having "the big picture."
One of my great concerns about the changes in modern medicine is this: It is becoming increasingly common for none of the clinicians on a patient's healthcare team to have that big picture so vital to expert and compassionate care.
On my recent post about clinical trials, commenter Steve Walker wrote, "The Phase III trial is being run primarily to satisfy the rigid, formulaic and in many cases scientifically obsolete requirements imposed by the FDA's Office of Oncology Drug Products for most cancer drugs...."
Is the randomized clinical/controlled trial (RCT) obsolete?
In Phase I trials researchers test an experimental treatment in a few patients for the first time. The purpose is NOT to see if the treatment kills cancer cells, but only to:
What if the patients in a Phase I trial experience shrinkage of their tumors? Should this speed up FDA approval of the trial drug?
Sunday's NYTimes ran an article tackling a complex ethical dilemma in cancer care: The witholding of treatment in clinical trials. Because I was treated in 3 clinical trials in the 1990s, the topic is close to my heart.
When a parent has late-stage cancer with limited life expectancy, everyone wants to rewrite the expected ending. The doctors and nurses, the parent with cancer, the family's loved ones and especially the children want to make it "all better."
If fairy godmothers existed, cancer survivors with late-stage disease who are rearing children might ask: "Fairy Godmother, can you give my family a vacation from my illness? Please?"
Now some parents can.
When my three children were young, every night I put them to bed one at a time. We'd talk for a few minutes before beginning our ritual interactive songs, tucking-in, kisses, "Nighty night" and lights out.
One evening as I began the routine with my youngest, he said something that practically stopped my heart: "Mom, do you remember when...."