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:
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.
During my first remission I began work on After Cancer, a book to help patients understand and respond in healthy ways to the medical, practical and emotional challenges of recovery and long-term survivorship. The subtitle was Your Guide Back to Normal.
But as I struggled with my own aftereffects and then recurrences, I realized my original approach wasn't going to work well for me.
The FDA revokes approval of Avastin for breast cancer. What's a survivor to do?
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.
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?
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.
What is disenfranchised grief?
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:
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.
Even though Thanksgiving is behind us, I thought you might enjoy reading "Thanksgiving 2010," which was published in the November 25th issue of Oncology Times.
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.
Esther Mauzy can teach us all a thing or two about how to become a Healthy Survivor.
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.
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...."
After losing a loved one, you might feel that you've been left with a huge hole in your life. The "hole" houses your sadness, loneliness and emptiness along with other painful thoughts and feelings.
Naturally, many people try to get rid of the hole, say, by trying to fill in the hole or trying to run away from the hole. Not me.
Rabbi David Wolpe writes a wonderful blog called "Off the Pulpit" that often offers useful messages for patients. This week, Wolpe offers a tool that can help foster healing relationships, an essential element of healing for Healthy Survivors.
A memorial is something that serves as a focus for remembering a past event or person who died. Monuments such as the Lincoln Memorial in Washington, D.C. and online legacies such as those found on www.legacy.com are examples.
Can a frame of mind be a memorial?
When I was a child, I thought people over 40 years of age were very old. I believed they were done growing up and knew everything one needs to know. Wrong.
Now over 50 years old, I often say, "I'm a work in progress."
What would you say if you got a flat tire on your way to an interview for your dream job? Or if you (or your wife) began bleeding two weeks after in-vitro fertlization? Or if you learned you or a loved one needed more chemo?
Does "Life is good!" come to mind?
Last week in Ithaca, as a member of the Presidents Council of Cornell Women I attended a networking lunch with a group of women undergrads. When it was my turn to offer a nugget of advice, I said:
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.
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.
Posted at 09:00 PM in Action, Dictionary of Healthy Survivorship, Doctor-Patient Communication, End-of-Life, Family illness, Happiness, Hope, Meaning of life | Permalink | Comments (1) | TrackBack (0)
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.
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.
In last week's Science section of the NYTimes, Denise Grady reported on a recent study in which most of the doctors who responded to a survery indicated they would wait until their terminally ill patients felt worse or were out of options before talking about end-of-life care, such as hospice.
I was moved to write a letter to the editor (p.D4 or click here) when I read one of the possible reasons cited: fear that patients will lose hope or that physicians will “yank away” hope by talking about end-of-life wishes.
"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..."
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
You've survived cancer. Now a friend develops the same type of cancer and is making horrible decisions (in your opinion). She's declining conventional therapies for a treatable cancer or deciding against telling her children she is sick. What's a good friend to do?
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)?
The Biorkman family celebrated Christmas last week. November 8th, to be exact. Is their calendar messed up? No, their timing was perfect.
When I was in practice I had little free time. During those precious minutes when I was not responsible for the care of my patients or my children, I was highly selective with what I was willing to read or do. But I paid a price.