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BY KATHY LATOUR | MAY 4, 2012
The sixth celebration of the Extraordinary Healer Award For Oncology Nursing was held tonight with a New Orleans style Mardi Gras band, beads, and a festive spirit to match.
The room was full this year as word has grown about this event, which has one goal, to celebrate nurses for the amazing job they do for their patients. The essays we receive from readers point it out over and over as they pay tribute to the men and women who go above and beyond to bring healing to their patients -- whether or not cure is possible.
We publish the winning essay in the summer issue, just as we will this year, but I wish we could somehow let you read all of them. Of course, that would mean publishing all 1,200 we have received in the last six years. We do put a good sampling in a book each year that we hand out, but I wanted to give the nurses a better sense of what patients say about them.
So this year I read the nurses a job description that I created that I think captures the essence of what I have determined would be the job description for the oncology nurse who is a composite of the qualities listed in the essays we read.
Here it is:
Seeking Oncology Nurse: Requirements: A highly skilled nurse who approaches the job with joy – and finds fulfillment spending days and nights amid the pain and despair of cancer patients.
Candidates should be able to demonstrate the ability to be a loving friend while dispensing the most difficult of treatments, and stand with pride as a warrior advocate for his or her patients, many of whom cannot speak for themselves.
He or she must be an accomplished teacher, one filled with compassion and courage – who has the patience of Job and the wisdom of the ages.
In addition to nursing degrees, degrees in psychology and divinity also required – as is background that includes politics and the practice of magic.
Must enjoy long hours, little pay, paperwork and body fluids.
Prior experience as an angel a plus.
Next came our fabulous speaker and honorary mistress of ceremonies, Diahann Carroll.
Actress, singer, and breast cancer survivor, she clearly had inspired more than one nurse in the room to join the nursing profession in her ground breaking role as Julia in 1968. The role was the first ever where an African American woman starred in a network television series and Diahann pointed out that it depicted a Black woman with a professional degree.
And, it turns out that Mary Gullatte, PhD,RN,AOCN,FAAN , the vice president for patient services at Emory University Hospital in Atlanta, who will be inducted on Saturday as the new president of ONS, was one of those inspired by Julia to join the nursing profession. It was our pleasure to bring these two wonderful women together for a photo.
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BY KATHY LATOUR | FEBRUARY 3, 2012
First a recap. For the past four days we have been bombarded with information about the decision by Susan G. Komen for the Cure to remove funding from 18 Planned Parenthood sites, using the reasoning that they don't fund any organization under investigation. Well, within about 12hours it became clear that the decision came straight from the office of Karen Handel the new Komen Vice President of Policy and a former Georgia office holder and gubernatorial candidate who is anti-abortion and has even gone so far as to say she is anti-Planned Parenthood.
Now there is enough evidence to confirm that the decision to stop funding organizations under investigation was made in December specifically to stop funding Planned Parenthood, and again it was Handel that drove the decision. Komen has been down the Planned Parenthood path a number of times in the past decade and had made what everyone thought was a final decision–-it would be funded. But that was before someone recommended Karen Handel as the best person for the job of Vice President of Policy.
That person is known in the ranks of Komen as someone who mixes a particularly powerful batch of Kool-Aid that Nancy Brinker has become addicted to.
So where are we? Komen stands by its decision, but now Nancy Brinker goes on television to say it's a policy change to give money to direct service organizations, not pass through groups, which means they want to give the money to the groups that do the mammograms and Planned Parenthood evidently doesn't do that, they must send women out and then pay for it from Komen funds. So why the switch?
Personally, I think Nancy considered what their decision would mean for poor women in Dallas who go to Parkland Hospital, which, I am fairly sure gets Komen funds for its screening program and has been under investigation for two years – and found guilty, by the way, in areas that don't pertain to screening. And no one thought about this before? Komen is in a mess and this is where the broken hearts come in.
At the first headline, I blew it off. Komen has been a target before, a lot. They are big, they raise a lot of money, and the well over 100 affiliates raise money through the Race for the Cure, 75 percent of which is kept local for their own screening, education and treatment needs. This money reaches the very poorest of the poor and the women who work tirelessly for Komen affiliates make a real and tangible difference in the lives of these women. These are the salt of the earth of the American heartland where women are proud to take care of each other and dedicate thousands of hours a year to do just that.
Speaking around the country at Komen events, I have met hundreds of Komen volunteers and I would be proud to call any of them a friend. I have never asked anyone if she was a Democrat or Republican or if she was for or against abortion.
With the 25 percent the national foundation receives they fund numerous other projects including basic research, and as a 25-year and 7-year survivor, and a woman who lost her mother to breast cancer, I count on research to be sure my daughter doesn't have to face this disease, and if she does, she lives through it.
I have been president of the board of two nonprofits funded by Komen, one, the Bridge Network, provides direct support to women diagnosed with breast cancer who have no insurance. The other was Gilda's Club North Texas, now Cancer Support Community. These programs would have had a much harder time without Komen.
But what has really broken my heart this week is talking to the women who built the foundation, some of whom spent upwards of 20 years committed to this cause. The woman who created the policy office at Komen, a survivor herself, spent endless hours in the halls of Congress during her 10-year tenure, which ended in 2008. She worked both sides of the aisle to overcome any idea that Komen was politically driven. She also convinced the leaders of our country that this organization was about more than pink ribbons, it was about the power of the vote. She organized advocacy groups before we understood what advocacy was about. For 10 years she grew the office, only to watch the newest occupant, who has been with Komen nine months, bring it down in two days.
These were strong women who wouldn't take no for an answer, just the way Nancy Brinker wouldn't when she started the organization as a promise to her sister. There are some of the "old guard" left, women who took Komen to the heights in the nonprofit world to make it what it was on Monday of this week: An organization committed to ending breast cancer that was built on integrity and very decidedly non political – because breast cancer doesn't care what you believe, it is an equal opportunity killer. There is no place for politics at Komen.
There are many of us who fear that Komen will not be able to recover from this in part because of the way it has been handled. If I had been Karen Handel, I would have offered my resignation immediately, and I was hoping she would have the honor to do that. Then I saw the retweet she posted, "Just like pro-abortion group to turn cancer orgs decision into a political bomb to throw. Cry me a freaking river" and feared the worse. This woman has no grace, no courage and an ego that doesn't care if she brings down in nine months what it took others 30 years to build.
Resign Karen. You owe it to a lot of people.
1:27 p.m. Nancy Brinker has made a statement that includes the following
"We will continue to fund existing grants, including those of Planned Parenthood, and preserve their eligiblity to apply for future grants," Nancy G. Brinker, the agency's ambassador, said in a statement.
So Handel is still there and to shut down the firestorm, PP can apply. This does not mean they will be funded.
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BY KATHY LATOUR | OCTOBER 13, 2011
Is anyone surprised that a new study shows 40 percent of cancer patients have symptoms of post-traumatic stress disorder. The study says one in 10 patients said they avoided thinking about their cancer, and 1 in 20 said they steered clear of situations or activities that reminded them of the disease (read hospital).
The symptoms of PTSD, according to the write up, are being "jumpy" and "having disturbing thoughts about cancer and its treatment or feeling emotionally numb toward friends and family."
Evidently only a few of us get full-blown PTSD, the rest of us get symptoms that can persist into the future – no kidding.
Sorry for the sarcasm, and I am actually glad they are doing this research because I'll take it to the next tech who tries to draw blood from me.I've learned to warn them not to fish around in my arm if they don't get it on first shot – because I tend to get violent. Jumpy doesn't begin to cover it.
The last tech started to chuckle and then looked at my face, "You aren't kidding are you," he said. "Nope." Someone trying to put a needle in my left arm takes me back to chemotherapy. Or rather, it takes my body back to chemotherapy. The last time a tech came at me with a needle, I said very tersely, "Do you know what you are doing?"
She looked at me very calmly and then drew my blood. It was, as they say, "a good stick." I've also learned that if I tell techs I need a pro, they will self identify – or go get one. For a while during and after chemotherapy, I couldn't drive toward my hospital because I got sick to my stomach. I didn't' attribute it to PTSD, but to becoming Pavlov's dog. I see the hospital, I get chemo, I throw up. I just eliminated the chemo and got right to the bad stuff.
The study on PTSD was published in the Journal of Clinical Oncology and is based on a survey of 566 patients with non-Hodgkin's lymphoma. It was conducted at Duke Cancer Center in Durham.
I wonder if the patients they tested were getting any kind of psychosocial support. I think that if we learn to face our demons, it's easier to go on. They didn't specify in the study if there were particular issues patients gave, but I know that for three years after my diagnosis I was a total wreck thinking the cancer was going to come back. Then I joined a support group where I could talk about my fears and know that it was a real possibility and decide what to do about it. The report also said being diagnosed with cancer is stressful and it stays with you. I say being diagnosed with cancer changes us – forever.
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BY KATHY LATOUR | SEPTEMBER 27, 2011
It seems like every time I open the paper or turn on the television (or computer), I learn of another cancer diagnosis or death or impending death of a well-known individual.
With 1,500 Americans dying a day from this disease, it shouldn't surprise me, but somehow I think we are socialized to see high profile individuals as different from the rest of us – somehow immune from the same maladies we common folk endure.
Then I remember how shocked I was when it was reported that Jackie O died of lymphoma. If the world's wealthiest woman could die of cancer, anyone could.
Last week it was two women whose names were known in political circles, Eleanor Mondale, daughter of former vice president Walter Mondale, and Kara Kennedy, daughter of the late Ted Kennedy. Granted, Kennedy's death was attributed to a heart attack, but her brother said treatment for lung cancer in 2002 had left her weakened. Mondale died of a brain tumor.
The list for the year goes on. Steve Jobs, who founded Apple, stepped down from his role there and attributed it to his health – he has been dealing with pancreatic cancer for a number of years and it's clear from photos of him that he is not well.
Laura Ziskin, producer of the Spiderman movies, died a few months ago of breast cancer. Cancer doesn't care if you are young or old, beautiful or ugly, well connected or a ditch digger. It strikes at random.
Of course, it does help if you are white and rich when it comes to having a better chance at surviving. The wealthy can use connections to find the best clinicians and the clinical trials that may require travel and other costs. They also don't have to worry that they will have their treatment stopped in mid cycle because their insurance benefits have run out. And statistics show that racial and ethnic disparities exist in cancer care, even when insurance and socioeconomic status are controlled for – a disproportionate number of deaths occur in racial and ethnic minorities. We should strive for cancer as the great equalizer in proving that all Americans are worthy of the best cancer care available.
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BY KATHY LATOUR | MAY 19, 2011
When I heard that Oprah was talking to Peyton Kramp as a part of reliving her favorite shows, it took me back a few years. I remember talking with Erin Kramp, Peyton's mother, a few months before she died of breast cancer in 1998. One of my students at SMU was assisting her with her book and other writing chores at her home not far from the campus and had made an introduction for me.
Erin and her husband Doug had already been featured on Oprah where Erin talked about the hours upon hours of video tapes she had made for Peyton. The tapes were filled with the kind of advice only a mother can give, but – more than that – they were filled with Erin and her amazing, light-filled personality. My desire to talk to Erin came from our shared experience of being young mothers with breast cancer, and the fact that she was living out my worst fear -- that I would die and not be here to raise my child. My daughter Kirtley was a year old when I was diagnosed with breast cancer in 1986, and Erin's daughter Peyton was 2 when Erin was diagnosed in 1994. I had spent many sleepless nights wondering how I could leave a legacy for my daughter should my cancer become terminal. Erin was doing just that. But how could she face it emotionally? I wanted to know this woman.
Erin and I talked a few times, and I like to think that she thought of me as someone who understood not only her pain but also her determination to leave a legacy for Peyton. She told me that she had already outlived her prognosis by a year and was able to see Peyton reach many of the milestones that occur at 5 and 6.
What I remember most is how her faith was evident in everything she did. She firmly believed that if this was to be her path, then she would do it with grace and wisdom. By openly talking about her death, she was living in that place called hopeful reality. She knew she was going to die and she had faced it and accepted it – but at the same time she was living every day to the fullest and working hard to find ways to extend her life as long as possible. It's a difficult place to live, but Erin had embraced it with the same kind of determination she had lived her life.
During my time as a breast cancer survivor I have lost many friends to this disease. Each has been a different kind of loss but the most memorable were those who found the same peace Erin did in a resolved death. When you experience such a death it provides a clear picture of how we should all live and die. I liken it to moving into the valley of the shadow of death and getting comfortable, hanging curtains, seeing friends and knowing that the reality is that everyone lives here – they just don't know it.
Erin didn't just leave a legacy for Peyton, she left one for all of us.
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BY KATHY LATOUR | FEBRUARY 17, 2011
In 1986 a group of cancer survivors gathered in Albuquerque, New Mexico, to create the National Coalition for Cancer Survivorship (NCCS). Those taking part knew, as we all do now, that it's not over when it's over -- cancer that is. That October day was probably the official beginning of the cancer survivorship movement. Today the NCCS is the premiere survivorship organization in the country. It represents all survivors in a number of capacities from its office in Washington, D.C., and has been responsible for some amazing advances in cancer survivorship and how we are perceived.
One of the first things NCCS did was look at terminology. There is power attached to the words we use to describe ourselves, and, up until NCCS decided to make a change, we were mostly called cancer victims. It's a term I hate because a victim is someone who has no power or voice. That never felt like me.
So NCCS formalized the term "cancer survivor," which they defined as the person diagnosed with cancer from the day of diagnosis and for the rest of his or her life.
But the definition has had its ups and downs, mostly because identifying someone as a survivor from the day of diagnosis doesn't divide the experience into during treatment and after treatment, which is a huge milestone. For example, in CURE we define survivorship as when treatment ends and for the rest of your life.
Then, last week, I had a discussion with Julia Rowland, PhD, the Director of the Office of Cancer Survivorship at NCI (a position brought about, in part, by NCCS lobbying). Julia was the keynote at the National Conference on Cancer Nursing Research in Los Angeles and much of the research being presented by nurse researchers looked at long-term and late effects.
Julia and I were discussing late effects of treatment, and she said that understanding the long term impact that drugs and radiation can have on our bodies should be something taken into consideration in the treatment decision. As an example, she told me about a dynamic business woman she knew who had been diagnosed with cancer. The woman also happened to be blind.
In discussing the treatment plan with her oncologist she asked about side effects and he casually said that one of the drugs could cause neuropathy, loss of sensation in the finger tips and toes. She stopped him right then, pointing out that her fingers were her eyes. Together they changed the regimen to one that would not cause neuropathy.
Obviously, if there is one drug that is the difference between life and death, it would be used. But if the drugs are being given in the adjuvant setting, the risk versus benefit must be explored if the long-term or late effects would impact the quality of life or the ability to perform in a career. It's the same discussion many are having as more is known about chemobrain, the cognitive dysfunction that can accompany some drugs.
If the use of the drug lessens the risk of recurrence by 5 percent it needs to be weighed against the chances that the accompanying cognitive dysfunction could end a career when sharp recall and multitasking are required.
Unfortunately we still have a long way to go before the cancer community will adopt such thinking. The focus remains on life at all costs as the only acceptable goal. But a discussion I had with Julia Rowland, PhD, last week helped me see how we will one day be survivors from the day of diagnosis because of the understanding of long term and late effects and how those must be taken into consideration at diagnosis.
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BY KATHY LATOUR | NOVEMBER 23, 2010
I spent last weekend with 130 nurses and women cancer survivors at Lakeway Spa in Austin, Texas, for the Life Beyond Cancer retreat put on by the US Oncology Foundation. This is one of those wonderful events where women and nurses from across the country come together to look at the psychosocial issues of living with and serving those who have cancer. Those attending are taking copious notes to take home to their communities around such issues as planning for survivorship, how to find happiness in the fear of chronic cancer, nutrition, facing fear of recurrence, family issues, women and sex, end of life, and lots more. At the same time a wonderful assortment of wellness activities were offered.
As a long time survivor I have been attending and speaking at gatherings such as this for a number of years and am constantly reminded of the courage and hope of these women and those who love them as they sort out how to integrate cancer into their lives. Our partners in this, as always, are oncology nurses, the amazing, magical men and women who could have chosen a much easier career path but instead spend their lives being there for us.
Over the years, I have been so excited to see the growing awareness that cancer is a dual journey of medical and emotional. The professionals in these fields have grown in numbers and professionalism.
At one point while speaking, I asked the audience of survivors how many had received any survivorship information from their own professionals at home where they were treated.
I was appalled at how few raised their hands. The issues we are talking about are well known to be a critical part of the cancer journey. The report Lost in Transition: From Cancer Patient to Cancer Survivor, which came out in 2006, provided the research (which has grown significantly since then) to support the recommendation that survivorship be seen as a distinct phase of the cancer experience.
So what's going on. Everyone knows survivorship care plans and emotional and social support are critical to healing, but it's not being done. Well, it will surprise no one that the answer is money. Most insurance doesn't pay for psychosocial support and most cancer providers can't support it. Other cancer providers say that their one or two support groups provide what's needed when often the patients don't even know their provider offers any kind of support.
This means that most programs that address survivorship are community based and supported by staffing paid for by fundraisers that take a phenomenal amount of energy to support – and in the recession it becomes even more difficult.
Many of the women here are leaving to go home with a new dedication and determination to grow a survivorship programs in their communities – hopefully engaging their cancer providers in the task.
This has been a weekend of healing and hope for those present. The assembled women represent every part of the survivor communities from the newly diagnosed, to those in treatment and those who have finished treatment. There are also a number of women living with chronic cancer, one of the new categories of survivor brought about by the improvements in treatment. Their needs for emotional and social support are unique and challenging and must be addressed.
As a survivor diagnosed in 1986, I have watched the growth of awareness and information around the need for healing. When I finished my last chemo, there was no understanding of the fear that would hit within hours. They disconnected the I.V. and I left.
"Who was watching me now?" I struggled alone to understand the fear that engulfed me as I tried to regain the joy of raising my daughter -- while wondering if I would be around to see her start preschool. There were no support groups, and I felt like the only young woman in the country who had breast cancer. I was a mess. It wasn't until three years after treatment ended when I joined a support group in my doctor's office that I began to understand what I had been through – and how little help I had been given to understand and cope with the new person emerging from cancer.
I am seeing the same awareness this weekend in the faces of the women here. I know that next week, they will return to their homes armed with knowledge that they will spread to their support groups and cancer providers. My hope is that in the future these gatherings will be a place where we can all compare our local survivorship programs and take home ways to improve on what is already in operation. That day will come, but we have to demand it.
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BY KATHY LATOUR | JUNE 22, 2010
My daughter Kirtley was only 13 months old when I was diagnosed with breast cancer in 1986 at age 37. By fall 1991 I was healing emotionally, and Kirtley was a happy, healthy 6-year-old who had inherited my stubborn nature and love of books. Even after the first of the BRCA genes was discovered in 1990, I knew my risk was low. I was the first in my family to get cancer. It was stroke or cardiac issues that removed my family tree limbs. Then my mother was diagnosed with stage 4 breast cancer in the fall of 1991; she died six months later. It was a difficult time for me and became even more difficult as I began to worry about whether I now needed to worry about passing on more than a love of books to my daughter. As I celebrated survivorship and Kirtley grew, I constantly scanned information about genetic testing for breast cancer, feeling sure that we would know more before I should worry.
In 1994 the BRCA2 gene was identified, and in 1996 came the first commercial test that could identify the mutated genes. I knew that if I tested positive, Kirtley had a 50 percent chance of carrying the gene. This was a terrifying thought for two reasons: Kirtley might be positive, and she was too young for either of us to do anything about it; Kirtley might be negative and stop worrying about her risk of developing breast cancer.
I applied what we knew about breast cancer prevention, keeping Kirtley active and healthy. She ice skated every day after school, but I'll take odds that I was the only mother at rink side watching her daughter jump and spin while at the same time thinking of a study that showed exercise during adolescence was an important factor in staving off breast cancer.
Then, in 2002 my brother was diagnosed with early stge prostate cancer at age 48. OK, so it was time that I requested the packet of information about genetic counseling from my local cancer center. After reading it, I was still reassured that my risk was small.
Kirtley graduated from high school in 2004 and left for college. But on the way to my next cancer maintenance check up, I ran into the oncologist who specialized in hereditary breast cancers. I asked her opinion about being tested -- not liking her response.
"You were under 40 when your breast cancer was diagnosed," she said. "All women diagnosed under age 40 should be tested."
I decided to wait until Kirtley graduated from college in 2008 to be tested, knowing that she would be well educated on breast cancer and old enough that we could have a meaningful discussion about options.
But I moved the testing date up after receiving a second breast cancer diagnosis in 2007. Since this diagnosis was DCIS and I wasn't facing chemotherapy again, my biggest fear was that it raised my risk of being positive for one of the two gene mutations we have identified, BRCA1 and BRCA2.
I was finally tested in spring 2008, two months before Kirtley graduated from college. I was negative, something I saw as my graduation present for her -- but nothing I talked about with her. My second cancer diagnosis had scared her enough. I could put this discussion off for a while, but the genetic counselor's parting words meant it was still something we needed to talk about.
The counselor said that, while I didn't test positive for the BRAC 1 or 2 gene, there was something going on in my family as it had more than its share of cancer. We needed to be aware.
Kirtley is now an insured member of the work force in New York City and a few months ago she called to ask me if I had been tested for the the breast cancer genes. I said I had and that I was negative and asked her why she was asking. Seems that at her gynecology appointment, her new doctor read through her family history and asked if I had been tested. Kirtley needed to know.
When Kirtley relayed the information, the doctor did the best thing possible.
She told Kirtley that being negative didn't mean she could stop worrying about getting breast cancer. Her risk was still the same as any other American woman, and, as we learned more about genetics, she needed to stay aware since there could be more mutated genes found in the future.
Kirtley took it in stride, and I felt pride that she has taken control of her own health. But, like any mother who has had breast cancer, I'll always worry.
To read more on sharing genetic information with children, read CURE's Summer 2010 article, "The Genes That Bind."
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BY KATHY LATOUR | JUNE 7, 2010
Suzanne Lindley has spent the last 12 years becoming an expert on living with cancer, not something she had planned for her life. In early 1998 at age 31, she and her husband Ronnie, an aerospace engineer, were living what she calls the good life of the upwardly mobile. They had a beautiful suburban home outside Fort Worth, two beautiful daughters, and were planning for a future that would provide for their eventual move to a country home.
Suzanne, who describes herself as someone who never wanted center stage, had a goal shared by many -- to be a great wife and mother, to live the American dream.
Cancer, as it does, changed those plans for the Lindleys. The future became immediate with a move to the country to a rented house for what they thought would be the last six months of her life. But as one treatment after the other extended her life, the months became years. They traded in the rented house for a sprawling ranch house with a corral for the horses, multiple dogs, and the various vehicles needed for country life, boyfriends, or overnight travel to rodeos and NASCAR events.
But far from isolating herself, Suzanne reached out via the Internet to other colon cancer patients and their families from around the country, becoming over the years a voice of reassurance and hope. Her job of being a great wife and mother expanded around 2004 to include being an advocate extraordinaire for the hundreds of people who have joined her family through the phone calls, emails, and insurance appeals she has written, not to mention YES, the nonprofit she formed to help educate those coping with liver tumors about possible treatments. She laughs about her new public life, recalling her first advocacy training on Capitol Hill where she hid in the bathroom when it was her time to talk before the group. She never thought of herself as any kind of powerhouse, she says in her soft, quiet voice. She is just someone who has found a mission that demands that she speak for others, whether it be talking Jim Belushi into performing at one of the liver symposiums, or "suggesting " to NASCAR Team Texas owner Mike Starr that maybe NASCAR might like to help, resulting in this year's auctions of VIP seats to a number of NASCAR events to benefit YES.
Suzanne and I spent one afternoon hanging on the corral behind her house while daughter Karlie fed the horses. As she reflected on the past 12 years, she said that she never thought she would be here this long. She said that she and Ronnie were talking the other night about their lives, and she came to an interesting realization.
Despite the constant chemo and all the other challenges of living with metastatic cancer, they are living the American Dream that they had always talked about.
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