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.
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?
There is no one right way to obtain knowledge, nourish hope or take action. So, too, there is no one right way to heal a rift between you and your physician.
But there are good ways -- and maybe even a best way -- for you and your physician. What follows are my suggestions to the patient who, at her last doctor visit, raised her voice in frustration:
Although I didn't have a magic answer for the patient in my last post who emailed me about her doctor visit gone awry, I was able to offer her some thoughts about moving forward as a Healthy Survivor.
I find it troubling when Healthy Survivors describe obtaining sound knowledge (the first step to Healthy Survivorship) as "arming themselves with ammunition" to make their case to their physician.
And the problem is....?
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).
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).
In yesterday's post, I shared a short story that has changed my life. Ever since I first read it, when unwanted change or loss seems to be ruining everything, I've thought, "We'll see."
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?
In my last post I shared my response to a reader who was upset by the media reports of a new study. The commenter expressed ambivalence about discussing it with her physicians: "I don't know if it would be healthy or not to ask my doctors...if [knowing what we know today] I would have been spared this surgery."
For smokers, snubbing out their last-ever cigarette is a key element of "getting good care" in their pursuit of Healthy Survivorship. But smokers often feel miserable while quitting, enough that most relapse.
A NYTimes article about ways to manage the costs of treating chronic pain also offers Healthy Survivors some tips on managing chronic pain itself.
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."
In some situations, your best choice is one that still involves some hardship, loss and/or pain. Perceiving such difficulties as a sacrifice can help patients on the road to Healthy Survivorship.
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.
My recent posts discuss the trouble with the adjective "rare" when talking about types of cancer. What's a researcher, clinician or patient to do?
Good news for Healthy Survivors! Now, along with ultra-strong hairsprays and ultra-rich ice-creams, we have:
Healthy Survivors (1) obtain sound knowledge, (2) find and nourish hope and (3) take effective action.
As a physician, I'm fascinated by the ways patients overcome the many obstacles to acting on sound knowledge in life-enhancing ways.
The details of certain awful moments stay fresh in your memory, such as where you were and what you were doing when the planes hit the World Trade Centers on the morning of 9/11/2001.
For me, one of those painful moments occurred on a Tuesday morning in 1990. Twenty years ago today, my oncologist walked into my hospital room and gently told me I had cancer.
This anniversary stirs two main emotions.
"Can you train yourself to run, cycle, swim or do another sport at the edge of your body’s limits, or is that something that a few are born with, part of what makes them elites?" So asks New York Times journalist Gina Kolata.
This topic touches on something of interest to me as a Healthy Survivor, namely, Pushing Past the Pain, as Champions Do.
How the trapped Chilean miners coped with life more than 2,000 feet below the earth's surface offers rich lessons on Healthy Survivorship. When you or a loved one enters the "storm" of illness or injury:
Recently, I've pointed out the clashes between business and ethical considerations and beween clinicians' obligations to their individual patients and to the method that leads to advances. What if researchers can find ways to satisfy both the science and today's patients?
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?
My last post introduced a dilemma regarding modern clinical trials: Is it ethical to randomize some patients to the "control arm" of a trial where they will NOT receive the trial drug?
According a NYTimes article, one particular trial of a therapy (called PLX4032) for malignant melanoma "ignited an anguished debate among oncologists about whether a controlled trial that measures a drug's impact on extending life is still the best method for evaluating hundreds of genetically targeted cancer drugs being developed."
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.
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...."
As a scientist, I credit clinical trials with advancing our understanding of cancer and ability to treat it effectively. As a patient, I credit clinical trials with playing an essential role in my survival.
From both perspectives it troubles me greatly that only ~3% of adult cancer patients participate in clinical trials.