Who walks for you

BY KATHY LATOUR | NOVEMBER 14, 2011

The playground of the Scottsdale, Arizona, elementary school was covered with bodies on Saturday as the 1,400 walkers in the Susan G. Komen 3-Day for the Cure sprawled on the grass checking blisters and changing socks. The lunch break on the second day of the 60-mile walk was a welcomed break for the walkers, each of whom raised a minimum of $2,300 to take part. They were at the halfway mark of the event.

The men and women just arriving for lunch looked through the sea of bodies to find their team, hoping to spend a few minutes together before taking off on the afternoon leg of the walk.

Some of the 36 members of Team Thrivr were waiting for their leader, Greg Hoffman, who for the second year headed the top fundraising team in Arizona, adding more than $125,000 to the dollars Komen will distribute this year. Since the beginning of the 3-Day, more than $600 million has been raised from the walks, which occur across the country.

Hoffman explained the Thrivr moniker, explaining that he had to leave out the "e" to be able to get the whole team name on his custom license plate.

Hoffman began walking the 3-day with his wife Jen, who died in 2009 of breast cancer at age 37. His team includes friends of Jen's, family, and two walkers from a past 3 day who Greg and Jen met one night at the campground when they couldn't figure out how to blow up their air mattresses.

Also walking with Hoffman this year was Diana Rowden, a survivor and vice president of survivorship for Komen National.

As more of the team made it to lunch, the energy level began to rise as the group prepared to take off for the next leg of the trip with stops at the medical tent to have blisters doctored or new pressure points bandaged.

Hoffman and I chatted for a minute about the time commitment of the 3-Day for him. Fundraising, he said will start in January. When I said he had turned it into a 365-Day event he said they take one month off. "In December we take a break. If someone says they have an idea for a fundraiser, I tell them to call me in January."

As Team Thrivr headed out, I noticed the quote that Hoffman had added to the T-shirt they all wore.

"To survive is necessary. To thrive is elegant." Maya Angelou

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Cardiac issues and Avastin

Cardiac issues and Avastin

BY KATHY LATOUR | OCTOBER 23, 2011

One of the issues for cancer survivors is the long-term and late effects of treatment-- from both radiation and the drugs used. For example, we have known for a long time that doxorubicin (Adriamycin) has cardio toxicity issues, and those who receive this drug need to be monitored. If you received Adriamycin, you had a heart scan before treatment and one after to be sure your heart was not damaged. I visited a cardiologist a number of years ago to get a good cardiac baseline when I was around 20 years out from treatment. I had been followed over the years and no problems had shown up, but I thought it was time.

The late effects of radiation are also becoming better known as those who received radiation live long enough to begin exhibiting cardio and muscoskeletal problems. This weekend while attending a conference on Cancer Survivorship for Clinicians put on by Dana-Farber Cancer Institute and Harvard Medical School, I heard of new concerns around Avastin and heart issues. Cancer patients who were treated with VEGF or VSP inhibitors – the drugs that target the angiogenic pathway, need to be followed for cardiology problems because these pathways are also essential in normal cardiac function.

The research around renal patients by Javid Moslehi, MD, co-director of the cardio-oncology program at Dana-Farber Cancer Institute, is scheduled for publication, and it follows researched released earlier this year around women with metastatic breast cancer who took the drug.

Basically, Moslehi showed increased hypertension, arterial thromboses including myocardial infarction, arrhythmias and heart failure in some patients. So the message is clear. If you have received these drugs, be sure you are being followed for cardiac problems.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Surviving cancer

BY KATHY LATOUR | OCTOBER 20, 2011

The room I am sitting in is filled with oncologists and nurses and cancer administrators from some of the country's largest - and smallest - cancer centers. They have gathered here in Boston as part of the LIVESTRONG Survivorship Leadership Training Institute to talk about cancer survivorship and how to create programs that will help us move from cancer patient to cancer survivor as healthy individuals.

As usual, I am in awe of these professionals who have devoted their lives to those of us struggling with cancer. They know, as do we who have been there, that it's not over when treatment is over. There are long-term and late effects. Survivorship programs are an idea whose time has come.

And it's harder than you might think to make it happen. A few of the questions they are addressing include program design - is it a clinical program that is most valuable, where cancer patients arrive with survivorship care plans in hand to see physicians or nurses to be watched for second cancers and other physical issues? Or does the program address psychosocial needs of survivors as they struggle with fear of recurrence, fatigue, anxiety and all the other emotional challenges we face? Or is it a research program where the studies are conducted to say that we need survivorship plans to live fully after cancer and for the rest of our lives? It's the research that will ultimately get insurance companies to say there is benefit in paying for these programs.

These are huge questions, and the 200 or so who are gathered are so passionate about helping people who are going through cancer. I can remember so well how abandoned I felt after treatment ended, when I lay awake at night and projected the absolute worst scenarios for my future. If only someone had told me to be prepared to live with the fear of recurrence, I could have battled the dark nights so much better.

CURE has been committed to covering survivorship issues and will continue to bring you the latest in where we are.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Post-traumatic stress disorder in cancer patients

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.

• The big news from the American Society of Hematology
• Dealing with the side effects of side effects
• What to look for at this year's SABCS breast cancer meeting
• The great equalizer
• The power of words

25 years of survivorship

BY KATHY LATOUR | OCTOBER 5, 2011

It's 25 years ago this week that I was diagnosed with breast cancer. When I try to get my brain around what that means, what I come up with is that this life, as I know it, started 25 years ago.

I sometimes wonder who I would have been had I not had breast cancer, which so shaped my life. I have joked that for me it was cancer as a career move. But what it really became was my mission.

I know from going through this disease with friends over the years that not everyone diagnosed with breast cancer becomes an advocate. Some picked up where they left off; they resumed whatever direction their life was going.

When I was diagnosed, I had just become a mother for the first time at 36. After a mastectomy and treatment, I had a hard time making sense of the attitude back then that I should just get on with my life. My life was gone, replaced by an abnormal fear of dying that took over my life for a few years – until my surgeon started a support group in 1989, the first in the city of Dallas.

From those women, I learned that cancer is a dual journey. The medical part has to do with cure (or as one surgeon said, Can You Remove Everything). The other part has to do with healing, the soul and the spirit of you that determines how a mortality issue will shape you in the future.

I learned in that support group that I had made good decisions when it came to cure, but had not even started the healing part, which meant feeling what had happened to me.

I learned this from one woman in the group named Marilyn, who joined the group when she had been living with metastatic breast cancer for nine years. Today, that's not unusual, but in 1990 it was very unusual. Marilyn got 18 months remission from each drug she took, and back then there weren't that many. She had an agreement with her oncologist that he would tell her when it was time to get her photo albums together. She figured it would take about six months.

When he finally gave her the signal that it was time, I expected her to fall apart, but she didn't. In fact, she said something that changed my life.

"Kathy, there are worse things than dying."

"Really," I remember saying, "How can that be?" The idea of leaving my child was one I could not hold in my mind.

"Worse than dying," she said, "is dying without having lived."

Dying without having lived.

And that for me became cancer's gift and what I am most grateful for in the 25 years since my diagnosis. I lived. When I sat at the ice rink watching my daughter skate around and around and then land an axle, I didn't feel guilt. I felt present.

I was a present mother.

I also bought a motorcycle, something I had wanted to do since I was a teenager and rode most places on the back of my brother's Honda.

I started taking things out of my bucket list at 40 instead of 60.

Cancer's gifts in the past 25 years include helping start two nonprofits in Dallas to help those with cancer. Writing a book about my experience and that of other women going through breast cancer. Meeting the most amazing women in the world as I traveled around speaking and doing my one woman show about having cancer. Seeing what courage and hope really look like.

And watching my daughter grow into a wonderful young woman who has traveled with me to London and Australia and now works in New York City.

The best of cancer's gifts.

I know what's important.

When my daughter Kirtley turned 21 in 2007, she was in the midst of her junior year of college in New York City while I was writing and editing CURE in Dallas. We talked and since her birthday fell in the middle of the week, we agreed we would celebrate another time. It was sad for both of us since it would be the first birthday we would not spend together.

And, I just couldn't do it. I took the last flight out of Dallas on the day before her birthday and arrived outside the brownstone where she lived at 11:45 p.m. Since she had a door that opened to the street, I could see through the closed curtains that she and her roommates, who knew I was coming, were up and about. At midnight I called her from in front of her apartment to say happy birthday.

"Mom, I can't believe you won't be here for my birthday," she said. I replied that "if she wished hard enough she might find me on her doorstep."

She opened the door and grabbed me, saying "You're here, you're here."

I was.

I spent the night, we had breakfast, she went to class, and I went to LaGuardia to catch my flight home. I spent $400 on a round-trip flight, $50 on round-trip cab fare, $50 for breakfast for two, $100 to slip in her pocket for her birthday. Being with my daughter on her 21st birthday --- you got it. Priceless. Thanks Marilyn.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Who is in charge?

BY KATHY LATOUR | SEPTEMBER 12, 2011

It's been 25 years, and I still see my oncologist once a year. Is this too long? Should I keep seeing him until I die? (We explore this topic more in "Coordinating Care After Cancer.")

When you have had cancer you begin to understand that not all doctors are created equally. There are those who care for our reproductive issues and womanhood and others who take care of sniffles and flu. And then there are those who hold our lives in their hands – or so we believe. After getting the results of my highly suspicious mammogram, my gynecologist called to tell me I needed to find a surgeon because I probably had breast cancer. I remember asking her if she could take care of it.

I laugh at that question now. Did I really believe gynos handled cancer? I don't know. I had no idea how many different kinds of doctors there were. I was young and healthy and hadn't filled out an insurance claim until my daughter was born, the year before I got cancer. She explained that there were specialized doctors that dealt with cancer: surgeons, oncologists and radiologists. I had stopped listening back at the word cancer. Soon I was embroiled in the cancer world of doctors and nurses and surgery and chemotherapy. My oncologist was a warm teddy bear of a guy who I really liked. But mostly I wanted him to like me and to think I was worthy of staying around a while to raise my kiddo. Somehow I felt like if he liked me, I would have a better chance of living.

As treatment ended and I tried to move on, he told me I would see him every three months for a while. Well, it doesn't take a rocket scientist to figure out that what he was looking for were signs it was back. I didn't make it three months for almost a year. I kept having aches and pains that I was sure were recurrence. Eventually, enough time had passed, and I was calm enough to go to six months and then eventually a year – but it took me about 12 years to get there. By then I had an internist who I had chosen with care. She had also had cancer. I felt she understood my occasional irrational fears. By now she has taken care of lots of the standard aging issues we all face.

My oncologist is still in my life. And always will be.

If you're finished with cancer treatment, who manages your care? Your oncologist, primary care physician or another medical professional?

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Diagnosed with metastatic breast cancer and going strong

BY KATHY LATOUR | AUGUST 23, 2011

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 throwing up or living with a mouth full of blisters.

But occasionally I do run into someone who is truly inspiring. Last weekend I met Kim Stewart, an occupational therapist in Milwaukee, Wisconsin. Kim was one of 13 breast cancer survivors from Aurora Health Care who came together to form Team Phoenix to complete the Danskin Triathlon on Sunday.

The group as a whole was amazing. The oldest participant was 67, and, when she finally crossed the finish line, it was with the whole of Team Phoenix there to walk her in.

Of the 13 Kim stood out because for the past seven years she has fought metastatic breast cancer in her bones and liver, beating them back with multiple rounds of chemo and unflagging determination.

When she was diagnosed in 2004 at age 35 with stage 4 disease she had only 8 weeks earlier given birth to her second child. Her first was 16 months old. She told her oncologist that she didn't want to be coddled; she wanted someone who would fight with her. After chemo, a double mastectomy and the removal of her ovaries, she went back to work, adding another round of chemo when liver tumors showed up in 2010. Today she is on Tamoxifen. "People need to understand it's a chronic disease," Kim says, clearly getting on with her life. When her surgeon asked her to join a group of women training for the triathlon, Kim signed up. For 12 weeks she trained twice a week with the group and then alone to build her swimming, biking and running skills. In the process Kim says, she regained control of her body. "I was making it do what I wanted it to instead of what it wanted to." Other side effects of physical training have been sleeping better and less stress.

Physical therapist Leslie Waltke, the coordinator of cancer rehabilitation for Aurora Health and one of the coaches for Team Phoenix, remembers one of the first group meetings when each of the women talked about why she wanted to do the triathlon. What Kim said has stayed with her, Leslie says.

"I want to show my kids what they are made of," Kim said. And she did. It was an emotional moment when Kim's husband Don place the medal around her neck at the finish line with her children Mackenzie, 8, and Colin, 7, nearby.

After the tears, Kim's reaction was to start talking about next year.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Another birthday

BY KATHY LATOUR | JULY 11, 2011

Tomorrow is Suzanne Lindley's 44th birthday, which makes me smile in a way that no other birthday does. I met Suzanne in early 2010 when I interviewed her for a story on metastatic cancer survivors that appeared in our summer magazine. She was diagnosed with metastatic colon cancer when she was 31 in 1998, and more than once she has been told that it was time to put her affairs in order.

Instead Suzanne got online and began researching any and all ways to stay alive. She became a huge proponent of radioembolization, which places tiny microspheres of radiation into the liver to kill the cancer. They worked really well for her and she founded a nonprofit called Beat Liver Tumors to reach out to others dealing with liver tumors. In the cancer world, I have known many survivors who turned their energy toward advocacy: They have started organizations that have made a real and tangible difference in the lives of others. Suzanne is one of those. She never draws attention to herself, but uses any platform to talk about radioembolization and how to be an empowered patient. It's been far from easy for her with ongoing chemo. But Suzanne is one of those metastatic patients who lives in a place called hopeful reality. She keeps doing what she loves while hitchhiking from one drug to another, fitting chemo into her busy schedule. In the past few years she has become a popular speaker at medical events, which has given her and husband Ronnie a chance to travel to Europe and other parts of the world.

When she is home in the rural town of Canton, Texas, she spends time with her two daughters, Karlie and Katie, now in both in their 20s. She also has a third daughter, 4-year-old Chloe. Ronnie and Suzanne were foster parents to Chloe as a baby and didn't even blink before agreeing to adopt her last year when they had the chance. It's a family that loves and supports each other. Since getting to know Suzanne for the story, I have kept in touch, trying to grab a few minutes at meetings we were both attending or chatting on Facebook or by phone. Suzanne always keeps her medical condition light in conversations because it takes so much energy to repeat it over and over. When she has set backs, as she has with spinal issues lately, she just mentions that it's been challenging. I have to pry information out of her. She would just rather focus on the next trip or event – or talk about Chloe.

I don't know why Suzanne has beaten the odds and neither does she. But I think she had a job to do for others and still isn't finished. I certainly hope not.

Send Suzanne good thoughts today – or better yet, go on Facebook and say happy birthday.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Art, creating and healing

BY KATHY LATOUR | JUNE 20, 2011

Humpty Dumpty sat on a wall, Humpty Dumpty had a great fall. All the king's horses and all the king's men Couldn't put Humpty together again.

I remember someone asking me after my treatment for cancer was over what it felt like on a soul level to be diagnosed with a life threatening disease. Hmmm. I wanted to give a thoughtful answer about how I really FELT. How did I feel?

I felt like Humpty Dumpty. I had fallen off my life and shattered on the hard surface of mortality. After gathering the strength to sit up and look around, I was trying to find all the pieces to put myself back together. That mental image of putting myself back together soon became a desire to actually reconstruct something as a symbolic way to go on.

This brings up an interesting topic – art and healing. We tend to think of art as drawing or painting an image that resembles something. But over the years I have come to realize that the creative process called art is what comes from within and can encompass any number of activities. I wanted to take something broken and reassemble it.

How to start. I love pottery and have collected southwest and pueblo pottery since the mid '90s when I began traveling to Taos, New Mexico. I love the round smooth, handcrafted pots, perfect -- just like my body was before cancer. Then I was shattered into pieces held together by scars.

As I tried to reframe the putting myself back together into a positive, I found that after being broken, we can add things that weren't there before when we put ourselves back together, and because of all the glue, we are actually stronger than before, and, with our cracks and glue, we have more dimension, more personality.

It kind of makes those smooth perfect pots sound boring. By the late '90s, I had been using the image of the broken pot enough that I wanted to actually do it. My fingers itched to find my broken pot and put it together with the special things that had joined my life since cancer. I had only begun to ponder the idea (so do I break a pot myself or what) while on a spring break trip to Taos when I happened to mention my plan to the sales person at one of my favorite galleries. Her face lit up and she said, "I have your pot," going on to explain that a pot in the shop by a local potter named Mary Witkop had been accidentally broken the week before. The name of the pot was Tears and it had the face of a woman sculpted in the side with one tear falling on her cheek.

Sure sounded like my pot. She rushed off to ask her boss if she could give me the pieces since insurance had been filed.

I knew it was my pot. I felt it in my bones. Tears, accidentally broken, yep, it was mine.

She came back and was sorry to tell me but her boss thought the insurance company would need the pieces. Oh well, she said, people break pots all the time so there would be another one for me. I wasn't so sure.

A week later I had returned to Dallas and she called me. The pieces of Tears were mine. The insurance company didn't want them. Now we had to find a way to get them to Dallas. I asked her to mail them, I mean, the pot was already broken. No, she said, they would break more. We hung up with both of us knowing that there would be some way that would present itself for me to get my pieces. My messenger ended up being a woman named Nancy Mixner who was visiting Taos a few weeks after I left. She was in the gallery and mentioned she was from Dallas and my clerk friend immediately asked if she had flown or driven. She drove, she said, why? Well, would she be willing to take a box to someone in Dallas. When Nancy asked the circumstances, my friend explained the whole story ending with my name.

Nancy Mixner stared. She had just been diagnosed with breast cancer and had read my book and wanted to meet me. Don't you love the way spirit works. So Nancy lovingly brought me the pieces of my pot, symbolically carrying the parts of my life back to me to be reassembled. One survivor to another. Not only did I get the pieces, I got a new friend. When I carefully opened the box, I found Tears, broken into a number of large pieces and then many small pieces where it hit the floor. Ironically, when I finished reassembling the pot, the point of impact was empty – there was a piece missing, just like me. I filled it with beautiful bright beads, gluing them on to one another as I reconstructed the part of me that was missing. In the cracks I put the talismans of my experience, the pink rhinestone ribbon, the earrings my mother gave me before she died, the mustang to represent SMU where they hired me while I was still in chemotherapy. The pearls for my friends and family and the charm my daughter picked out to represent her. And glitter, everywhere glitter. When she was finished Tears spoke to me. I was me again. With all the pieces where they should be. The cracks would never go away – I actually made sure of that by choosing to widen the cracks. And a few cracks would never line up, but that was as it should be. I have scars that will never go away and with all the body parts that I have had moved, well let's just say cracked works.

I frequently take Tears off her place on my book case in the living room and hold her. I look at each of the things I placed in the cracks and remember how much I gained from cancer.

To a trained artist, Tears won't say anything. To me she represents a journey from shattered to wholeness.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you

Celebrating Life

BY KATHY LATOUR | JUNE 7, 2011

On June 5, thousands of the estimated 12 million cancer survivors in the country came together to celebrate National Cancer Survivors Day. Across the country they took part in all kinds of events: They planted trees, they flash danced in malls, celebrated Christmas early or had picnics at their cancer center with doctors and nurses in attendance. I was honored to speak at one of these events in Freehold, New Jeresy, where some 200 survivors, family members and hospital staff gathered for lunch at Centrastate Medical Center. As I stood in front of the crowd doing my one-woman show "One Mutant Cell," it hit me that the cancer survivors in New Jersey are the same as those in Texas or California or Florida or Washington, all places I have spoken in the past few years.

We have the same scars from the same procedures and have endured the same treatments. We also have the same hopes for a future free of cancer.

This coming together of survivors also serves to help the newly diagnosed see those who have been through cancer and are moving on with their lives, an important reminder for all of us. There is life after treatment.

I was impressed with the celebration at Centrastate for a number of reasons. Physicians were present as were their nurses and radiation technicians. There were lots of hugs and casual chatting that I like to see between docs and patients. The physician who introduced me, Dr. Edward Soffen, a radiation oncologist at Centrastate, began by saying he had been asked repeatedly if he was going to sing again this year. So, he gave in and did a grand rendition of Day-O, encouraging the crowd to join in on the chorus, "Daylight come and me wan' go home."

He was having fun and so were his patients.

It's the kind of connection I love to see between doctors and their patients but don't very often.

• Dating Teleconference Today
• When the cancer comes back
• The cushion of silence
• The cushion of silence
• Who walks for you