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Living with cancer

BY KATHY LATOUR | DECEMBER 20, 2011

Suzanne Lindley was diagnosed with metastatic colon cancer 13 years ago at age 31. Since then she has become an ardent advocate for others living with cancer. She also writes about her life for CURE on occasion. This is one of those occasions.

I wake up with cancer. I go to bed with cancer. It has been a daily happening for so many years, I no longer let it be the first, nor the last, thought of every day. It has robbed too much from too many that I know and love. Yet, there are friends that I have met because of it; heroes who have forever touched my life as cancer has shaped our days and changed our directions. The past few weeks have been interwoven with the tapestry of these friendships and the special people and circumstances that brought us together.

I was at a LiveSTRONG Summit when I had the privilege of seeing Jonny Imerman for the first time. I soon became an Imerman Angel and found my angel, Kevin, and his wife Jen. Kevin is also living with stage IV colon cancer. His nickname is "Boa," shortened from Rocky Balboa and perfectly fitting! He has a strong will, a big heart, and embodies the meaning of LiveSTRONG!.

We have been fortunate to meet in person several times....for the first time two years ago after a Dallas Cowboy gadme and most recently just months ago when he spent a few days with our family. In between, we have marched the Halls of Congress, written hope in Dallas, DC, Washington, and on top of Ol' Baldy, seen the beautiful falls in Spokane, and even climbed a small mountain!

During the past two weeks, Kevin's struggle has been difficult. He and his family have weighed heavily on my mind. Kev has been in the hospital and at one point was not expected to survive. Jen hasn't left his side. A few days after this dire prediction I was happily reminded that there is no crystal ball as his voice greeted me on the phone. He assured me that he was a long way from giving up and that he would be spending Christmas with Jen and his girls. As he continues to recover, I marvel at his willpower. With Christmas just days away, I am now hopeful that he will not only be enjoying family - but celebrating in the comfort of his own home!

Other angels have graced my life this week, too. A few months ago I was dreaming that YES! would be able to procure a public service announcement and in my search for support, Eric answered one of my phone calls. His benevolence and dedication actually made our PSA possible and it has already changed lives! Thank you, Eric and CBS!!!

During our first conversation I learned Eric's dad is living with cancer. We shared both the obstacles and celebrations that cancer has put in our path. The pride and admiration he has for his parents was evident, and with every word I was inspired. Terry and I soon began talking on the phone, too.

On Wednesday, I had the chance to hug Eric's neck and thank him personally for making a dream come true. We talked about hopes, plans, and his dad. On Friday, I got to meet Terry, who since that first conversation a few months ago has survived two brain surgeries, an abscess, a stroke, and a cardiac arrest. His determination is enough to encourage anyone! I am amazed by his each and every milestone. I gave him a picture of hope when we met and as I left, he said, "Hope....that is what we all have, isn't it? That and each other."

His words have followed me the past few days, reminding me of how we help each other through the struggles, challenges, and fears. It is our patches of courage, tenacity, and strength that weave our lives together. As each day begins and ends, I am thankful for the blanket of hope....and friendship.

Love, Suzanne

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Cancer and Christmas

BY KATHY LATOUR | DECEMBER 14, 2011

I remember well my first Christmas after hearing the words "you have cancer." It's been 25 years, but there are certain things that stay with you. I was diagnosed in October when my daughter Kirtley was only 13 months old. I was in the middle of Chemo at Christmas, sick as a dog and, quite frankly, don't have very many memories of that Christmas except for the omnipresent fear every time I looked at my daughter that I may not live to raise her.

The traditions I had with my family and my new family of stepchildren went out the window as I tried valiantly to get up and down the stairs to bed. To say there was little Christmas spirit is putting it mildly.

The next Christmas was better and worse because it was the birth of the woman I dubbed the Crazy Christmas Mother. She moved in around October and collapsed around January 15, having produced the best and biggest Christmas anyone could remember. Some of you have met her too. She is born out of the fear that this may be the last Christmas, and she begins to run out of steam around year five of survivorship when it appears you might live -- or you can see that it's time to stop spending the family savings on Christmas.

It's an irrational way to live when you think that by buying everything your child wants, he or she will remember you if you die. Now that my daughter Kirtley is 26 I know that what she remembers is not what I gave her at Christmas, but what we did: going to east Texas to cut down the Christmas tree and bring it home; singing Christmas carols at the nursing home with all her friends from church; driving around to find the worst Christmas lights in the neighborhood (the criteria being how many different colored lights were used, whether they blended Christian and Secular ideas (i.e. Santa and Jesus), and just plain bad taste); and making Christmas cookies with her cousins on Christmas Eve. OK the blue suede boots were a hit but she was older.

So for those of you in treatment this Christmas or only a few years out of treatment, my best advice is to be easy on yourself. Let someone else host Christmas for a change. Buy out of catalogs if you have to shop.

Best of all, take a minute to really understand that in reflecting on all the people who have cared for you during this most awful time, you have truly experienced the love that this season represents.

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Understanding the new affordable health care act

BY KATHY LATOUR | NOVEMBER 30, 2011

A new poll from the Kaiser Family Foundation shows that the country is still confused by what the new Affordable Health Care Act does and does not offer.

According to the Kaiser poll, 6 in 10 Americans view favorably the provision that requires insurnce companies to provide easily read and easy-to-understand benefit summaries.

Take a minute to think about this. First, the fact that you have to put into law that insurance companies have to make clear what they are offering sure doesn't say much about the ethics of insurance companies. I know, I know, you all want to know what rock I have been living under.

What I read in this mandate is that most people don't have a clue what their insurance will or will not cover -- because the insurance company made it that way intentionally. How do these people sleep at night.

In the one woman show I do called One Mutant Cell, I joke about being denied coverage for a wig because I filed a claim for the wrong thing. Where, I ask you, would I have run into the information that in insurance language a wig is a "cranial prosthesis" -- and that is what I was supposed to file for. Then when I got the reimbursement, it was much less than I expected - of course. I called the insurance company and was given the formula they use to figure out what they will pay.

OK folks, math was never my strong suit, which is why I am a journalist. My trade is in words. But the forumula they gave me was so complicated it took me an hour to figure it out. The big kicker was one sentence that was something like this:"policy pays xxxx percentage of usual and customary costs."

Ok, so what are usual and customary costs for a wig. Well, come to find out that those numbers are on a document hidden in a vault somehere in insurance land. No kidding. They wouldn't give me the figure.

I learned a lot about insurance policies the year before I got cancer when I gave birth to a premature baby. I had never filled out an insurance claim until my daughter was born, and then I got to be an expert. What I learned was that my insurance policy was written in a way that I couldn't possibly know how much was not covered because I had not yet encountered the situation so didn't understand what I should ask.

This is where they get us -- they research what we will need and figure out how not to pay for it and sell us on all the pretty wrappings. It's like taking a bite of a beautifully decorated cake to find cardboard underneath.

When it came time to take my daughter home from the hospital I had to put the bill on a credit card -- $10,000 -- in 1985. It took years to pay off.

So that resulted in me learning how to read an insurance policy, and, since my husband was self employed, I went out and compared and found one that was $1,000 out of pocket and then they paid 100%. I signed us up -- then a month later I was diagnosed with breast cancer. Sorry.

I was well covered for my cancer, but when it came time to renew my policy the next year, the rates quadrupled. This was where they got you. I called and got the gobbleydgook about why before letting it lapse. I had taken a full time job and the insurance kicked in the day after the policy ended. I was very lucky. Today cancer patients face bankruptcy in numbersyou won't believe -- and this is when they have insurance. Check out the story in our winter issue on financial toxicity.

This brings me to a question. Is there a good insurance company out there that has made it easy to file and that has been supportive and clear about what they and do and do not cover.

Which one is it? Tell us please. We want to thank them.

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The environment and cancer

BY KATHY LATOUR | NOVEMBER 28, 2011

Cancer results from a complex interaction of genetic and environmental factors. However, only 5 percent to 10 percent of cancers are hereditary , meaning that a person was born with a gene that makes him or her more likely to develop cancer. Therefore,90 percent to 95 percent of cancers are caused by external factors such as lifestyle choices that includes, among other things, smoking, diet, obesity and drinking alcohol.

Also included in external factors are environmental causes such as exposure to radiation and chemicals, and viral or bacterial infections that can damage cells and weaken the immune system. In the Winter issue of CURE, we begin a two-part look at the environment and cancer with the hope that it will help clarify some of the complexity and confusion around this controversial issue.

It seems appropriate we begin this discussion in 2011, a watershed year for the issue with voices from policy, science and advocacy bringing the discussion into the spotlight.

In March, the National Resource Defense Council (NRDC) and the National Disease Cluster Alliance released a report focusing on "disease clusters" in 13 states, those places where "an unusually large number of people have been sickened by a disease such as cancer or experienced birth defects and other chronic illness."

In May 75,000 names on a petition were delivered to top environmental officials in the Obama administration requesting a response to the 2009 President's Cancer Panel report, which called for a national strategy to eliminate the use of cancer-causing chemicals.

In addition, two pieces of legislation focusing on cancer causing chemicals and needed government action have been placed before Congress.

Determining environmental causes of cancer is quagmire of politics, science and the human factor. It pits researcher against researcher in complicated and often contradictory science.

Take, for example, the May 31st announcement that the International Agency for Research on Cancer (IARC) had classified wireless cell phone use as "possibly carcinogenic to humans," placing it in group 2b of the list of carcinogens.

The next day the headlines read "Cell Phones May Cause Cancer," but few of the stories explained that the classification puts cell phones in the same category as numerous chemicals ending in ene and ine as well as coffee (which has some evidence of causing cancer of the large bowel), gasoline engine exhaust and pickled vegetables. Category 1 agents (classified as carcinogenic to humans) includes 107 chemicals with recognizable names such as arsenic, asbestos and strontium-90. But category 1 also includes alcoholic beverages, leather dust, wood dust and salted fish (Chinese-style).

This finding by the IARC still doesn't clarify cause and effect, says David Gorski, MD, PhD, managing editor of Science-Based Medicine and a researcher and surgical oncologist at the Barbara Ann Karmanos Cancer Institute in Detroit, who points out that epidemiological studies are particularly difficult because of the variety of factors involved as well as the design of studies.

"We set statistical significance at 5 percent chance that the result could occur by random. If you do 20 studies you will get one that looks positive. And all studies have confounders, particularly epidemiological studies." This, Gorski says, is why one outcome from a study must be duplicated.

This is not to minimize potential cancer causing agents, he says, some of which have been tracked down and identified, tobacco for one. What it points out is the complexity of identifying and proving something is cancer causing and the ability to read through the science speak to determine the actual message. It took 14 years for action against tobacco.

The cell phone debacle came only a month after the 25th anniversary of the Chernobyl nuclear meltdown in Ukraine, which was six weeks after an earthquake damaged the nuclear reactor at the Fukushima Daiichi plant in Japan, sending radiation into the surrounding air and countryside. Scientists now know that cancer clusters followed Chernobyl and are applying this knowledge to the Japanese incident to determine who is at risk for long-term effects and how to ameliorate them.

The entire issue is complicated and confusing – and increasingly important, advocates say, as more chemicals enter the environment. Whether any of the questions proposed this year around the relationship between toxic chemicals and cancer will be answered remains to be seen. Understanding the connection requires sorting through the political, scientific and human aspects of the issue, and we hope that the two features we are presenting will do just that.

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The great equalizer

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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Mindfulness and cancer

BY KATHY LATOUR | SEPTEMBER 22, 2011

I have never understood why every cancer center in the country doesn't have a program on mindfulness meditation. Let's look at the science here. Mindfulness meditation reduces stress, which Barbara Anderson's research says reduces recurrence. Studies show it lowers blood pressure and, while a little stress is good for us, a lot of ongoing stress can release chemicals in our body that are very bad for us. And, let's face it, when you hear the words, "you have cancer," your stress goes up. A lot. And for a long time.

The goal of mindful meditation is to get us to that place where we are present – in the here and now – not worrying about something that has yet to happen or something that happened yesterday that we wish had been done differently.

Again, for cancer survivors we know from studies that our worst fear is that the cancer will come back, and we spend a lot of time thinking about it – and what comes next. Before I heard Jon Kabat-Zinn, PhD, talk about mindfulness, I always thought of myself as someone who was fairly present. Having had cancer when my daughter was a year old, I have often said that one of cancer's gifts has been enjoying watching her grow up. I was present as she grew, taking those small moments as gifts that I may not have had – and which many of my friends didn't get.

So it was a shock to me when I heard Kabat-Zinn speak a few years ago as part of the Lynn Lectures here in Dallas. These lectures honor the life and spirit of Lynn Tucker Grogan, who promoted the importance of the interrelation between body and mind and healing while going through breast cancer. A good friend of hers, Lynn Kutler, created the lecture series to keep the leaders in the field coming to Dallas. It is jointly sponsored by Susan G. Komen for the Cure and local Komen affiliates. As I listened to Kabat-Zinn speak about being present, I sat smugly in the packed auditorium, thinking he wasn't talking to me because I meditated (well sort of) and was definitely present. Then he showed the audience a Selective Attention Test, a video clip of two groups of people bouncing a basketball. One group wore white t-shirts and the other wore black. Our task was to count the number of times the group wearing white bounced the ball. Just so I don't ruin it for you. Go ahead and do it yourself right now and come back.

Well, it made me a believer that I had a long way to go to be really present. Amazing. The Lynn Lecture this year is at Texas Christian University in Fort Worth on October 18 at 7 p.m. at TCUs Ed Landreth Auditorium and features another well-known mindfulness expert, Dr. Daniel J. Siegel, professor of psychiatry at the UCLA school of medicine where he is on the faculty of the Center for Culture, Brain and Development and Co-director of the Mindful Awareness Research Center. His topic is The Healing Power of the Mind.

In case you think I am one of those who says you can cure yourself by being positive, I think that is hooey. When well-meaning friends would encourage me to stay positive during my treatment, I would say, "I am positive. I am positive I am scared to death."

But I do believe we have only begun to understand the power of the brain. And I have been miffed why we haven't heard much more about meditation and its positive impact on cancer patients and survivors. Probably because there is no pill attached so no one will make money by promoting it.

Tickets to hear Siegel are $15 for the public and students are free. To get tickets visit the website.

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Surviving cancer as inspiration

BY KATHY LATOUR | AUGUST 29, 2011

OK, I got really beat up by some folks on our facebook page for this line from my blog last week. "Calling a breast cancer survivor an inspiration is not something I do lightly. I think the term is awarded to many of us for just trying to stay alive. There is nothing inspiring about it. "

I was hoping to focus on Kim Stewart, a woman with metastatic breast cancer in Milwaukee who did a triathlon and who I see as someone who will inspire women with stage 4 disease not to give up. But lots of people got hung up on what is and is not inspiring. Maybe I should have said. "When I was going through treatment for breast cancer and throwing up for hours at a time and living with a mouth full of ulcers, I found it strange when people called me an inspiration. I didn't feel that way and I sure wasn't trying to inspire anyone. I was only trying to stay alive."

And to the question about whether I have been inspired by survivors I have met along the way. You bet. Too many to name but here are a few.

Marilyn had an ear to ear smile, and when she joined my support group back in 1990 I was surprised to learn that she had been living with metastatic disease for nine years. We only had a few drugs back then and she would respond for a while and then relapse. Marilyn had a joy about living that was hard to beat, and I wanted to know how she did it when she was living my worst nightmare. Well, she explained, there were worse things than dying, and one of them was dying without having lived life to the fullest. Marilyn inspired me to live life to the fullest.

Brenda's breast cancer metastasized to her lungs two years after her diagnosis in 2005. A cocktail of Herceptin and a few other select drugs put her in complete remission by 2006. When I met her at the San Antonio Breast Cancer Symposium three years ago she had just learned that a new drug called Herceptin had gotten rid of them – all of them. She was free of cancer. Another flare up of tumors in her lungs meant a new drug was added to the cocktail and once again, she was free. Then in April of 2007 she learned the cancer had reappeared in her brain. Xeloda was added and by October Brenda was again in total remission. When I saw her at San Antonio again in 2010 she was working on getting into a clinical trial and had jumped through the majority of hoops with only a few more to go. Brenda inspired me to never give up.

Suzanne was diagnosed with metastatic colon cancer at age 31 in 1998. She did regular treatment until 2004 when her cancer spread to her liver and she was told there were no more options. She went on line to her colon network and one man reached out to tell her about brachytherapy, where small spheres filled with radiation are sent directly to the liver. It worked and Suzanne was able to return to chemotherapy. In the midst of all this, Suzanne, who used to hide in the bathroom when called upon to speak in public, began talking across the country about options for liver tumors. At the same time she and her husband Ronnie bought a house in the country with horses where they and their two daughters could enjoy a slower pace of life. In addition to all this, they took in a foster child who had been born to a friend of their daughters. This year they adopted Chloe, now 3. Suzanne inspired me to keep on living no matter what you think the future may hold.

And there are so many more. I guess I could say that cancer itself inspired me to become an advocate for those who don't have a voice or need someone who knows the ropes to walk beside them on the journey.

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Cancer anger

BY KATHY LATOUR | AUGUST 1, 2011

It's been one of those weeks when cancer seems to be winning and I am angry. I try to stay positive, surrounded as I am daily by the ongoing battle between cells growing out of control and ways to stop them. Some weeks I feel positive when I hear from long-time survivors or read the positive results of a study on a new drug that might make a difference.

The week started with a read through of a diatribe on our Facebook page that I missed the week before while on vacation. This reader was mad at the world and no matter how staff and other readers tried to reason with him, he went on about how CURE should be doing this or that as if we held the cure for cancer in the pages of the magazine. He was irrational and angry -- at cancer.

Then I got a call from yet another friend with the news of a new cancer in her family. There were questions to answer about surgeons and staging. It's one of those cancers that my oncologist likes to call a "bad actor."

Then today I learned that a woman I interviewed for a short piece on a Phase I clinical trial is now off the trial because it didn't have any impact on her tumor.

I talked to her early in the week and she was so hopeful and enthusiastic that she drew me in that this might be it -- when I knew after 25 years of new drugs that were going to be "it" that it probably wasn't. But I could still hope. She has had stage 4 colon cancer since 2009 and all the standard drugs were no longer working. She had been waiting since last fall for this clinical trial to get up and running, hoping she would still be healthy and qualify. She was and she began the drug aimed at the cancer's stem cells on June 30.

Stem cells are the mother ship of cancer cells and they are the hardest to kill because the body gives them some major defenses. They are also the cells that researchers suspect are at the root of cancer metastases.

This new drug was going to shut down one of the pathways that kept the stem cell going. An added bonus was that this drug didn't have the nasty side effects of the others she had taken. When we talked, she said she felt great, full of energy and keeping up with her three sons, all under 13.

I knew, and I am assuming she did, that Phase I clinical trials are not about finding curative properties. The only thing they are measuring is toxicity and dosage. This one was also looking at impact on tumor, so it gave some hope to those who were eligible, meaning all other drugs had failed. There have been a few -- very few -- situations where a Phase I trial made a real difference in survival.

But this wasn't one of them.

It makes me sad because I know she was only one of many people who learned that she had exhausted her options for drugs this week. It makes me beyond sad – and very angry at this disease.

What do we do with the anger that cancer causes? How do you deal with it? Tell me so others can benefit.

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Oncology Nurses

BY KATHY LATOUR | MAY 13, 2011

We've known for a long time that oncology nurses love CURE magazine. Back when we did patient forums, we often had a number of oncology nurses sign up. They came at their own expense to educate themselves to be better healers.

Our Extraordinary Healer event is now five years old, and at this year's Oncology Nursing Society Meeting we awarded the fifth nurse with a spa weekend.

And now we are working on creating a magazine just for oncology nurses named, you guessed it, Extraordinary Healers. The first issue will appear this fall as a special issue of CURE, but we are hoping the magazine will be a quarterly next year, serving as a sister publication to CURE and helping with nurse patient communication by offering both groups their own take on a story. The title wasn't hard to come up with since these men and women are extraordinary.

I was reminded of that again this week when I sent out an invitation to one of the presenters at ONS who I asked to join the advisory board for this new magazine. The advisory board is critical in the creation of Extraordinary Healers magazine because they know what nurses need and want and, since we want this to be a unique publication for this group, we wanted to go directly to the source.

Asking busy health care professionals to take time out of their day to help us can be daunting. While many of the nurses on the board have been with us a long time, this nurse was new to me. I had read her presentation from ONS about "moral distress" for nurses and was really impressed. So I wrote her a long email explaining who we were and what we planned to do and how much I need nurse researchers such as herself to help guide us in the content for the new publication.

I eagerly awaited her reply, hoping she wouldn't say, "Who are you and what do you want again."

Instead, she sent back an email that started, "WOW," that went on to tell me how excited she was to be asked and thanking me for asking her. She was also nominated as an Extraordinary Healer in 2010.

Aren't oncology nurses great. Call your oncology nurse today and let him or her know how much you appreciate what they have done to make a terrible situation better.

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A night to remember

BY KATHY LATOUR | MAY 2, 2011

This year's Extraordinary Healer award event at the Oncology Nursing Society meeting in Boston was the best yet. Of course, I say that every year while still in the energy of the event. The room was filled with nurses, and, while the finally tally has yet to come in, we had 850 RSVP.

When each of the essayists read her words with her nurse standing beside her, it was hard not to get emotional. Our winner, Marie Hayek from Columbus, Texas, couldn't have been more surprised. Martha Hastedt, who nominated Hayek, wasn't surprised. She had been telling Marie to get ready to go to Boston, so sure was she that Marie's commitment to her oncology patients would win.

Every year without fail, the winning nurse protests that the others were so much more worthy than she, and this year was no exception.

I got to spend time with the finalists and the families and friends they brought to the event. Finalist Corinne Gray was accompanied by a very special friend named Cathy who, we found out, also lost her husband to cancer around the same time Corinne did. Robert Martinez was also her husband's nurse, and the women decided together that they would nominate him. They focused on Corinne's story but worked on the essay together. Martinez was the nominee who became an oncology nurse after retiring from Verizon after 30 years. He came to the event with his daughter Tomasita, who is also an oncology nurse.

Mistress of Ceremonies Cyntian Nixon of Sex and the City fame chose sections from each of the essays for her talk. She also talked about all the people surrounding Sex and the City who had struggled with cancer, including Evan Handler, who played the role of Charlotte's husband. The show's writers were moved to add a story line about breast cancer in the series after so many of the show's writers dealt with cancer.

Nixon was great, standing for pictures with nurses for 45 minutes before having to rush to her New York-bound train. The nurses clearly loved Nixon, with more than one squealing with delight as the shutter snapped.

It was a remarkable evening.

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