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BY KATHY LATOUR | MAY 5, 2012
I rode the shuttle to the early sessions at the Oncology Nursing Society congress this morning, and my conversation with the nurse in the window seat has given me some new perspective on those nurses who are at the bedside of dying cancer patients. We were chatting about which sessions we had attended. Well, actually, I was sort of interviewing her about what she had learned from the meeting, when I saw from her badge that she was a first-time attendee. She said that the poster sessions, where nurse researchers make large posters of their studies, gave her some great ideas that could easily be transferred to her hospital and her job. When I asked what role she served, she said she was a bedside hematology nurse in the stem cell transplant area, and a good portion of her time was spent with very sick patients and their families. Because I know that this area is also one with a high mortality rate, I asked her which of the sessions she had attended and, not unexpectedly, she said she had attended the pre conference workshop on end of life. This overflow workshop explored the issues surrounding that time of transition from this world to the next, and, for those nurses who experience end of life more often in their jobs, it brings with it the need for special skills and the ability to self heal.
I can't imagine how hard it is to keep an open heart to the pain of being present for your patients' deaths and then be expected to walk to the next room where a patient is preparing to go home.
This nurse was struggling with the challenge of creating the relationship needed to spend the last week of a patient's life with them when she wanted to be part of the whole continuum of care. She was looking for ways to spend more time with her dying patients and the family. On that short bus ride, I saw once again how oncology nurses constantly think about ways to be closer to their patients. We parted ways with her talking about how she would share what she had learned with the other nurses in her area when she returned. Wow.
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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 | MAY 2, 2012
New Orleans is hosting the Oncology Nursing Society Congress this year, which means the angel energy is at an all time high here as thousands of nurses arrive from across the United States. On Thursday evening CURE presents one nurse with the Extraordinary Healer award, an annual honor we bestow on one of three finalists from hundreds of nurses nominated by our readers.
And it does take people with something special to become oncology nurses. They could have chosen nursing careers that required much less in the way of emotional commitment than working with cancer patients, and yet they are fiercely committed to their patients whether as inpatient nurses or outpatient chemo nurses or nurse practitioners or oncology nurse specialists.
At one time I spoke to small groups of oncology nurses on a regular basis, and I used to begin by passing out small pads of paper and asking them to write down why they had chosen oncology nursing. I would give them about 5 minutes and then tell them to stop writing. Without taking up what they had written, I would tell them that I knew what they had written – I knew why they had become oncology nurses.
"You became oncology nurses because you really like the hours, right?" I would say, and they would laugh and shake their heads at the absurdity. "Oh," I said, "That's right, it's because you like the pay," and again they would elbow each other in unspoken agreement that money was never enough and it had nothing to do with it. "No," I would say in response to them, "then it has to be that you really like body fluids."
This would set them laughing. "No, that's not it."
And then I would get serious and tell them what I did know they had written.
They were "called" in one of any number of ways to oncology nursing. A family member had died of cancer, prompting a vow that they would be there for patients in their lives – or they had chosen oncology after nursing school when one patient had touched them during that part of training when they didn't know what area they wanted. And my favorite – always when I spoke there would be in any group of 20 nurses at least two who had vowed they would NEVER do oncology. They hated it. They would do anything else, but not oncology. And then for some reason they ended up in oncology.
I heard stories about returning from maternity leave and oncology was the only opening and they agreed to it, "only until something else came up" and that was 25 years ago.
Or, they wanted a transfer from an existing job because of one reason or another and the only opening was in oncology and they took it until something else opened up and now knew they were meant to be there. That's why I say the angel energy is high this week. These men and women are the chosen nurses to be there for us at the worst time of our lives, when we are frightened, sick, angry, confused and, did I say terrified. They may have chosen oncology or it may have chosen them, but it's where they belong and they know it. And so do we.
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BY KATHY LATOUR | APRIL 11, 2012
It's always fun for me to get a call from a former student from my tenure at Southern Methodist University. Such was the case last fall when I got a call from a young man named Norberto Diaz, who had been my student more than a decade ago.
Come to find out he had taken a new job, and, while he had called to catch up, he was also calling to tell me about his new job with a Dallas dentist named Dennis Abbott whose specialty is working with oncology patients. Of course, he knew my history, and he knew I was working at a cancer publication. When he began telling me about what Dr. Abbott was doing, I was intrigued.
We had never done a story on dental issues around treatment, but I still could recall the pain of oral mucositis during my treatment. For days I walked around with a mouth full of liquid pain killer. Back then they had little to offer me but pain killer. Today Dr. Abbott has much more for his patients.
It turns out that dental issues are huge for head and neck cancer patients as well as those who have problems with their teeth before starting any kind of therapy. We did a story on dental issues in our winter issue and had a number of readers say something along the lines of, "it's about time you talked about dental issues."
So, we are going to do it again. This time in a facebook chat – tomorrow, April 12, at noon on our facebook page. Come join us and talk directly to Dr. Abbott about your dental issues.
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BY KATHY LATOUR | APRIL 4, 2012
On April 12, we are going to have our first ever Facebook chat with Dennis Abbott, DDS, the founder and CEO of Dental Oncology Professionals of North Texas, an oral medicine practice dedicated to meeting the unique dental and oral health needs of patients battling cancer.
I met Dr. Abbott when a former student of mine looked me up to tell me he was doing public relations for a dentist who specialized in oncology. I was intrigued, and it was great to hear from my former student, Norberto, who graduated in the early '90s and had worked tirelessly since then for nonprofit organizations as he worked to make the world a better place. After doing some research with Dr. Abbott and others in the field, we decided to do a story on oncology dentistry and had a big response from our readers. We had a number of readers say something along the lines of "It's about time you talked about dental issues."
My interest came from the fact that I suffered a lot from oral mucositis during chemotherapy.
Oral mucositis is that nasty side effect that causes your mouth to fill with little blisters. My mom used to call them canker sores, and it felt like I had a mouth full of them. The only thing that had any impact on it at all was liquid novacaine, which I kept in my mouth as much as I could. When I tried to eat it was impossible, and talking was out of the question, which for me was really hard. I couldn't sleep because I had to spit out the novacaine, and I would wake myself up and not be able to go back to sleep.
When talking to Dr. Abbott about mucositis before the story, he told me about how he treats it now and just the compassion in his voice made me feel that today's cancer patients were getting lots of care that we didn't get in the '80s when they didn't know what to do other than try to kill the pain.
Some patients face losing their teeth and others have bad teeth going into treatment, which can impact their health directly.
To participate inCURE 's Facebook chat and to hear what Dr. Abbott has to say join us on April 12 at 12 p.m. CT (1 p.m. ET/ 10 a.m. PT). You can RSVP for the event here.
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BY KATHY LATOUR | MARCH 26, 2012
CURE is celebrating its 10th anniversary this spring, and, for me, it's hard to believe we have published 40 issues – and now have an annual Resource Guide and special issues and books and pocket guides and all the other material that have come from our office in the past decade.
Working on a cancer magazine was wish fulfillment for me. When I was diagnosed with breast cancer in 1986, I remember thinking that I wanted to do a national newsletter about cancer that would offer the stories of those who had been there for the newly diagnosed. Little did I know that 14 years later I would get a call about an oncologist who was starting a magazine for patients, and he was looking for a journalist who had had cancer who might be interested in helping him. Needless to say, I rushed right over.
It's been hard, sometimes, spending my days writing about cancer. We see the people and their families in the midst of the cancer struggle and, hopefully, give them both the medical and psychosocial information they need to be empowered, educated patients who have the tools to fight cancer on every level. But sometimes it feels like slow going when we hear about someone we interviewed dying.
Over the past decade, the staff here at CURE has seen promising basic research move into clinical trials that promised great hope for a better treatment – only to see it fail. We all wait, as do the researchers and the patients, only to have the drugs fail to provide a better outcome than what is already available.
But in writing our 10th anniversary feature, I had a chance to take a step back and look at the last 10 years and see that we have made progress – real progress--the Star Trek kind of progress in many areas in cancer. In fact, CURE was founded in 2001 because the first targeted treatments had begun to be used. Instead of drugs that killed randomly, the new targeted drugs went after specific cells and parts of cells that resulted in easier treatments. One of the most successful drugs developed was Gleevec, and people with a form of leukemia that used to require a bone marrow transplant (one of the worst kinds of treatment) now take a pill every day that has minimal side effects.
Technology has improved surgery with robotics and pinpoint radiation therapy that keeps healthy cells out of the way.
And, we have learned in the past decade that we can no longer lump everyone together the way we did when I was diagnosed with breast cancer. Back then you either had breast cancer or you didn't. The only variable was big or small, which was early or late. Now the variables in the kind of breast cancer you have may mean one kind of treatment or another specifically suited to you.
Women with a gene called Her2, estimated at 25 percent of breast cancer patients, now get a very targeted breast cancer drug called Herceptin. And women whose breast cancer recurs no longer face immediate death but often live five, 10, or even 20 years with a good quality of life. These women are part of the 13 million cancer survivors who are growing to 20 million over the next 8 years who are called survivors, those whose lives have been interrupted by cancer but who choose to go on living to the best of their ability.
In the area of supportive care have come advances in the fields of pain management, nausea, and cognitive dysfunction. Researchers have come to understand that just as important as curing the patient is paying attention to the family and life yet lived. So we have seen a good decade.
Celebrating is important, and I really like the ACS ads about being the official sponsor of birthdays. Mostly I like the fact that after you have cancer, you stop worrying about how old you are and just celebrate that you are here to celebrate. I remember after I was diagnosed someone whining about turning 40. I looked at her and said, "I have a cure for that, but you don't want it." It's interesting how one piece of information can change your view on another.
Next year the ACS celebrates its 100th birthday. Now that will be a long list of accomplishments and a lot of celebrations. Instead of presents send money.
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BY KATHY LATOUR | MARCH 16, 2012
14 years and counting.
I had lunch with my friend Fran DiGiacomo yesterday. We don't get to see each other as much as we did when we were in a weekly group at the Cancer Support Community (formerly Gilda's Club) five years ago. I facilitated a group called Engaging the Spirit back then, and Fran always came and shared her spirit with us because she had enough a lot of spirit to share.
I met Fran initially around 2000 when she called me because she was looking for an editor for her book I'd Rather Do Chemo than Clean Out the Garage. Always one who enjoys humor around cancer (my show is called One Mutant Cell) I didn't have time, but got hooked by Fran's spirit. Fran was dealing with her second bout of cancer then. She had grown up knowing if she made it past 40, she would be doing well. She had already faced down breast cancer, and, at the time, was dealing with metastatic ovarian cancer.
She handled it the same way she had the breast cancer. Take out the cancer, give her chemo and then just leave her alone to paint. I think by the time I met her she had had multiple surgeries during which she had lost her colon to a j pouch and most of the other innards. Luckily, the cancer seemed to like the peritoneal cavity and decided not to move on to other organs, so she was on a regular regimen of debulking surgeries and then chemo. She also carefully researched complementary approaches, some of which had to have worked for her to look so good at 14 years out from diagnosis. Her most powerful medicine has been paint – the kind she uses to do her still life paintings and portraits of the city's elite. She told me about a time when she was so sick she could hardly stand up, but she met with a client to talk about a portrait and immediately felt much better. Fran is very private about her bad days. You don't hear from her or her husband Len, and she just mentions in passing any hospital stays. It's just part of her life now, and she would rather it be treated that way. When not painting, Fran is researching doctors, drugs and new complementary approaches to see how she will take on the cancer in the next round. This has been her longest remission – almost two years. And she has enjoyed every minute of it. Fran has lived longer than she ever imagined, and the past three years have been the great miracle for her as she has watched her two sons marry and become fathers, which means she is a grandmother. Every month or so she can be found in California for a week, playing with her 3-year-old grandson, Paul, in Los Angeles before heading to San Fran to see granddaughter, Quinn. And there is another one on the way. It's just a miracle, Fran keeps saying, it's just a miracle.
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BY KATHY LATOUR | MARCH 7, 2012
Getting breast cancer at 37 was pretty terrible. I had a 1-year-old daughter who was the light of my life, and I guarantee that if you talk to any mother who is diagnosed with breast cancer, it's all about the children.
At first it was about me living long enough to raise her. I wanted her to be old enough to remember me. Then five years after I was diagnosed, my 72-year-old mother was diagnosed with a really nasty breast cancer.
At about that time, we started to hear about a breast cancer gene. I don't know when the reality hit me that my cancer might be genetic, but when I added 2 and 2 and came to the very frightening conclusion that, if I did have a gene, I could have passed it on to my daughter, I got very angry. Not my daughter.
When another gene was identified it was still too soon for me to consider being tested. She was only 7, and there was little I could do at that point. Then when she was a teenager, my brother was diagnosed with prostate cancer at 48. Then at 57, I was diagnosed with a second breast cancer in the other breast. It was time.
I tested negative, but the report said I was in a familial cluster or something like that. I asked my genetic counselor what it meant, and she said that there was something going on, they just didn't know what it was, and I would need to be alert for new tests and other ways to look at genetics.
Great news. As I lived my life after that, I kept up with what was going on and my daughter kept getting older. She graduated from college, got a job (hooray!) and had health insurance. On her first visit to the gynecologist, she filled out all the paperwork and the doctor had barely said hello before asking if I had been tested for the gene.
When she called me asking if I had been tested, I told her yes and that I was negative. Now it was up to her doctor to say what I hoped she would -- and she did. She would have to be her own advocate and keep abreast of information about genetics for her own health as well as getting mammograms early and do breast self-exam monthly starting now.
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BY KATHY LATOUR | FEBRUARY 16, 2012
We get many journals here at the CURE office as you can imagine. I picked up one this morning from the Oncology Nursing Society and found an interesting commentary on men's communication style in one article.
It seems that in designing the North Carolina Cancer Hospital in Chapel Hill, which opened in 2009, someone thought it might be a good idea to put a white board in the outpatient restrooms. I don't know if this was an effort to keep the halls looking neat and clean or to give directions on how to pee in a cup, but I'm guessing that no one expected that men would begin leaving inspirational messages for each other -- which is exactly what happened.
Since I can't get a picture of the white board, here are a few of the notes the guys left each other. Many are Christian, scriptures to remind each other that God is in charge and will be there for them. Others are prayer requests and others are prayers given. I have to admit that I was chuckling at the guy who just couldn't stand it and had to number them so someone would know where to start -- had to be an engineer. Then I stopped and tears filled my eyes at the idea of the father who wrote, "pray for my son." Someone added "Cancer Sucks" and one writer wrote "widespread panic" and circled it, not explaining if it was how he felt or how the board made him feel.
By this point in the story, I was attached to the board and the men who had found the place where they could express those powerful emotions. It was amazing to read how the nurses took charge, becoming so attached to what had become a sacred place that they asked for a larger board. When it came, they moved the smaller board, messages and all, to a another wall and put up the big board. The writer reports that it didn't take long for the first message to appear in the upper left corner, "Please pray for Shawn and her family."
If you are from Chapel Hill, take a picture of the boards and post them on our facebook page.
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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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