Today let's look at her husband's view of the article. Robert Pardi's comments were posted on Pallimed to enrich -- or shall I say, to straighten out -- the discussion about his wife's decision. Although he doesn't use the term, he's telling us his wife was a Healthy Survivor.
Fatal Distraction is a gripping article that is not about illness, but about surviving the death of a child. Although wrenching to read, this article by Pulitzer Prize-winning journalist Gene Weingarten (2010) illustrates useful lessons for Healthy Survivors and their caregivers.
In my April 6th post I discuss the case of Dr. Pardi, a palliative care physician who chose to continue aggressive cancer therapy when she was dying. Letters to the editor about the article don't mention what I consider to be a key point.
A NYTimes story of Dr. Pardi's dying illustrates that it is difficult to project what you will think or feel when faced with a grim prognosis.
I'm sure to some people, my flag of names doesn't look like much. To me, the ribbons tell stories of love and loss, resilience and hope.
I would never call cancer "a gift" in my life. But without doubt many good things have happened because of my illness. I mention the most important silver linings in my poem, The View From Remission.
Here is one gift to make life easier for any woman currently undergoing chemotherapy:
Years ago at a conference, the emcee introduced each survivor sitting at the dais. Once or twice during each introduction, the audience interrupted with applause and cheers. I wondered if I was the only person who didn't feel like clapping.
The cover of Rochester Medicine has a photo of the handsome CEO of my alma mater. Dr. Bradford Berk was a successful cardiologist and CEO of the University of Rochester Medical Center. An avid athlete, on May 30, 2009 he was thrown from his bicycle after the driver of a car unintentionally pushed him off the road.
A key element of the pursuit of happiness as a Healthy Survivor is seeing potential in what is left after illness or injury prevents or takes away usual sources of joy.
Healthy Survivors use language that helps them get good care and live as fully as possible. In the case of challenges, it is usually better to say "very" instead of "too." For example, "This newspaper article is too very upsetting."
What if a topic really is "too" upsetting? What's a Healthy Survivor to do?
Cancer did not make my life uncertain. Cancer simply exposed the uncertainty of life.
This insight helps me accept the uncertainty of survivorship, but it doesn't help me deal with uncertainty. So here's one that does:
News Flash: "The results of a study prove a promising new treatment to be less toxic and more effective than today's standard therapy. Experts are calling these results 'practice-changing findings.'"
While most people rejoice, some feel upset. Why?
"You won't believe what happened today," she says. "What happened?" you ask, beginning to worry about all the possible bad things it could be. She then begins the saga, "I was going grocery shopping, and..."
January 1st is a new beginning. In the spirit of the New Year, I'll review the premise of Healthy Survivorship and renew my pledge to do all I can to help others become Healthy Survivors.
When patients with serious diseases are being cared for expectantly, they often scoff at the standard medical discriptors: "Watch and Wait" or "Wait and See." For them, a phrase that better captures the experience is "Watch and Worry" or "Worry and See," circumstances not conducive to Healthy Survivorship.
CURE is a superb magazine. Excellent writing and graphics serve its mission. As its tagline says, "combining science with humanity, CURE makes cancer understandable." As if that weren't enough, subscriptions are free to survivors and their caregivers.
As a member of the advisory board, I recently submitted a guest blog post, entitled Mantra for a Healthy Survivor
Okay. You were treated for cancer. It doesn't mean every medical problem thereafter is related to your history of cancer.
When patients refer to "good" and "bad" thoughts, I often wonder exactly what they mean.
You will never hear me call cancer or any other horrible disease a "gift." So how can I talk of happiness when dealing with Alzheimer's Disease (AD)?
Years ago, I was waiting at a red light on my way home from my oncologist's office. A boat-like car slowly pulled up next to me. I looked over and saw a gray-haired woman sitting up straight. Her gnarled fingers gripped the steering wheel at 10 and 2, as if she was doing a pull-up to peer over the front hood.
Staring at her, I had a powerful thought:
The Biorkman family celebrated Christmas last week. November 8th, to be exact. Is their calendar messed up? No, their timing was perfect.
The primary purpose of this blog is to encourage discussions about Healthy Survivorship and to help modern patients (1) get good care and (2) live as fully as possible. I can't address Healthy Survivors' pursuit of happiness without talking about the pursuit of fun.
During this week's interview, I introduce the notion of "healthy hope" and illustrate how this hope evolves as your circumstances change and your outlook matures. Here's another example:
Last evening I was interviewed by Betsy de Parry on Lymphomation Live, a weekly webcast sponsored by Patients Against Lymphoma. In this show entitled "The Art of Survivorship," we discuss how knowledge, hope and action help people become Healthy Survivors. The information and advice are addressed to patients dealing with any medical challenge (not just cancer) who want to get good care and live as fully as possible.
The hour-long interview is available online by clicking here. I hope it helps. With hope, Wendy
Hope is complex and dynamic, comprised of patients' many different hopes that wax and wane as their circumstances change and as their outlook evolves. I define "healthy hope" as hope that helps patients get good care and live as fully as possible.
Here's a useful way of looking at the hope-and-happiness issue after colostomy:
Yesterday's post discusses a study in which patients who are told their colostomy is temporary are less happy than those who believe it is permanent. I'd like to suggest an alternative explanation to "holding on to hope" as the explanation for the unhappiness.
Last night a man named "B" greeted his first trick-or-treater. B wore blue scrubs, a face mask and a stethoscope. His mom sat in a wheelchair, a blood pressure cuff on her arm and oxygen tubing connecting her to an oxygen tank.
Facing Facts, At Least Briefly generated some discussion about patients who don't want to know if they are dying because they don't want to ruin their quality of life. This leads to a more general quandary: What if getting good care makes it impossible to live fully, and what if living fully makes it impossible to get good care?
Tags: acceptable risk, delayed gratification, Healthy Survivor, Healthy Survivorship, living fully, second-best treatment, treatment
As I enter our local market tonight, a youngish woman is walking ahead of me with a cast on her leg. I daydream for a moment about how inconvenient it must be, although it doesn't seem to be slowing her down.
Minutes later, I'm at the checkout with two brown-paper packages of meat. I notice the woman in the cast putting her credit card away just as my food begins its ride toward the scanner.
Right or Wrong? extols the benefits of good communication between doctors and patients. But what if a patient makes the request, "Doctor, if a time comes that I'm dying, please don't tell me I'm dying."
It seems a reasonable request, if knowing "would only increase my anxiety and make it impossible for me to hope for future better days," as described in the post's comments by Bint Alshamsa.
Posted at 01:17 PM in Doctor-Patient Communication, End-of-Life, Family illness, Happiness, Healthy Survivorship, Hope, Knowledge, Meaning of life, Treatment Decisions | Permalink | Comments (6) | TrackBack (0)
Tags: conspiracy of silence about impending death, end-of-life, Healthy Survivor, Healthy Survivorship, open communication, truth at end-of-life
Healthy Survivors’ activities and relationships are ever-changing throughout the survivorship journey.
For all Healthy Survivors, there is a time when ongoing involvement with other survivors is unavoidable. Their need for treatment puts them in reception rooms and treatment suites filled with other survivors.
A trying time of survivorship is the interval between knowing you might have a problem and learning your exact diagnosis. Why? Because you can't reassure yourself you are okay - or are going to be okay - if doctors are ordering tests for the purpose of finding out if you are okay or are going to be okay.
Pastor Carlos Wilton refers to a quote by Friedrich Nietsche, "That which does not kill us makes us stronger." Wilton, a survivor whose lymphoma is currently stable, says, "Those who have the audacity to believe in the resurrection can attach a little addendum to that saying: Even the thing that one day kills us will do the same."
What does a stroke have to do with Healthy Survivorship? In my case, everything.
As a physician, my unwanted cancer diagnosis in 1990 was the beginning of a fantastic opportunity to learn about illness and healing in ways I couldn't when I was healthy. This morning, another doctor shared with me some of the lessons she learned through having a stroke.
When something goes wrong, people often conclude somebody did something wrong. Or that everybody did everything right, but the original decision - the choice that led to the problem - was wrong. But these may be the wrong conclusions.
Patients and the healthcare team can do everything right, and things can still go wrong.
Two nights ago I was working out at the gym, upping the treadmill speed higher than I've been able to for years. I was so focused on reading the book perched on the equipment while I speed-walked that I barely noticed my progress. Only when I finished my workout and headed toward the door to leave did it hit me: "I haven't felt this good in years."
Tags: coping with cancer, exercise and recovery, Healthy Survivor, Healthy Survivorship, normal after cancer, post-cancer, post-treatment fatigue, post-treatmentm, recovery after cancer
Last spring, I sent out hundreds of emails and letters announcing the "Final Flight" of Wendy's Eagles. After raising $15,813, two of my children and many friends walked the 5K with me at the Dallas Lymphomathon to raise money for the Lymphoma Research Foundation. Then Wendy's Eagles retired.
Now spring is approaching, and Wendy's Eagles is getting ready for April 2008. What's the deal?
Dr. Spencer Johnson's short book, The Present is intended as a parable on obtaining success and happiness. For me, it's also a story for Healthy Survivors.
NPR's Leroy Siever's describes "a sobering situation" in his post today. If his cancer responds to upcoming radiation and goes away, but then comes back again, he won't have many treatment options.
Empathy is the ability to understand and vicariously experience the feelings of someone else. This skill is adaptive, helping you respond to another person's needs in healthy ways.
With the rise of support groups -- and now Internet chats and blogs -- patients sharing similar problems can easily seek out and find each other. And they do. So can a Healthy Survivor ever have too much empathy?
Tags: burnout, compassion fatigue, empathy, gallows humor, Healthy Survivor, Healthy Survivorship, Serenity Prayer, suffering, support groups, survivor
Three steps lead to Healthy Survivorship: knowledge, hope and action.
Step One: Knowledge. Unlike learning how to tie one's shoes, learning how to be a Healthy Survivor is a never-ending study session. Why? Because knowledge about preventing, diagnosing and treating medical problems is evolving. Because bodies are aging. Because one's understanding of how to deal with stress, change and loss - as well as with relaxation, sameness and gain - grows with each experience.
"I know this sounds strange, but all I want is a normal life." My favorite refrigerator magnet captured my longing to use adjectives such as "uneventful" or "boring" when describing my day.
If you haven't seen the video, "The Last Lecture" by Professor Randy Pausch, try to carve out 75 minutes from your schedule to hear what this model Healthy Survivor has to say about life.