Lambeth Hochwald

 in the Winter 2005 issue, the California radiologist who created 

 has inspired thousands of bloggers to join the online community for people with cancer.

After his diagnosis of stage 4 non-small cell lung cancer in January 2004, Berman created the blog site not only to help cancer patients update family and friends on their progress, but to also provide a way for individuals to express their emotions. Best of all, the site—named for Berman’s goal of painting one of his toenails red for every year he lives post-diagnosis&mdash;just began a partnership with the American Cancer Society that will enlarge the site’s exposure and appeal.

As for Berman, he’s continuously challenged by his own health. “I’ve been pretty much staying alive,” he says. “It’s sometimes difficult and sometimes easy for long stretches.” He spends his days exercising, reading, helping his kids with their studies, being a father and husband, and, of course, nurturing the site.

“Our biggest aspiration for the site is for the community to continue to grow as a warm, loving, and helpful site for people to support and help one another with information and experience in the field of cancer,” he says. “We’re so happy that a great ethos exists on the site, uniquely its own, and hope it continues to flower as the next several thousand bloggers join and strengthen the voice of cancer patients and cancer advocacy.”

And he’s excited to paint his fifth toenail in January.

, who was diagnosed at 15 with Ewing’s sarcoma, she was waiting to see if she could take part in a phase I clinical trial testing an IGF-1 (insulin growth factor 1) inhibitor to keep the cancer at bay. She was enrolled in the study and for months, she was doing well. Then, just recently, her doctors discovered the tumor had grown slightly. Caylor worried she would be taken off the study and have to begin radiation.

“It’s scary,” says Caylor, 18. “I only have one lung and messing with it with radiation makes me a little scared.” (Her initial treatment regimen included surgery to remove one of her lungs.) Luckily, her doctors determined that she could remain in the study for two more months before getting scanned again.

For Caylor, life on the clinical trial has been fairly routine. “I was able to go about my life, including tennis, working after school, and studying,” she says. “I’d go to school every Monday and leave at lunchtime for my sessions.” Now a senior, Caylor has applied to two public colleges in Texas—both are close to Children’s Medical Center Dallas, where she receives treatment&mdash;and she can’t wait to start college. “I’m in the top ten in my class,” she says. “They have to accept me!”

has tirelessly committed herself to spreading the word about breast cancer screening to the African-American community, specifically through the Sister Study. Joyner, who was profiled in the Spring 2008 issue, does it to honor her two sisters, one who survived and the other, Carrie Noland, who died of the disease at age 51.

Since our story, Joyner, of Nashville, has appeared on local TV and radio programs, including two Spanish-language radio shows.

“I don’t even speak Spanish, but I feel so strongly that Latina women need to know about this study,” says Joyner, 62, who has sarcoidosis, an inflammatory disease that affects her breathing and mobility. But it doesn’t get in the way of her mission—to inform all women, but especially women of color, about the importance of breast cancer research.

“When you’re dealing with women of color, it’s a little more work to get them involved in research,” she says. “When I’m hustling around a health fair, I’m sometimes asked if I get paid for what I do. At first, I did it to express how proud I was of my baby sister who died of breast cancer and my other sister who survived.

“Later on, I realized that the Sister Study gave me a vehicle to grieve. I talk to my [deceased] sister and ask her how I’m doing.”

, whom you met in the Fall 2007 issue, is slowly adjusting to life without her husband, Steve, her high school sweetheart who died three years ago at age 52 of lung cancer after fighting it for 26 months. It hasn’t been easy for Neifert and her two sons, now 19 and 21. “Their dad was their best buddy, and he was gone at a very crucial point in their lives,” she says. “They hit the most important parts of adolescence without their father.”

Her mission of advancing knowledge—and funding&mdash;for lung cancer has kept her going. “As a family dealing with lung cancer, our grief experience is different from families with other cancers because of the stigma surrounding it.” Although she recently stepped down as co-chair for the California chapter of the Lung Cancer Alliance, she hasn’t slowed down on the work she does for the organization, something she began while Steve, a non-smoker, was alive.

“Right now, we’re working on an initiative on a tobacco tax that will address lung cancer,” she says. “It will provide money for lung cancer research.” Neifert balances her work for the Alliance with her job as a sign-language interpreter, taking care of her mother-in-law who just moved in with the family, and being a mom.

Editor’s note: Phillip Berman passed away at his home in Coronado, California, on  February 8, 2009. CURE is proud to honor his memory. 

Articles

CURE revisits people featured in past issues, including Phillip Berman, Callie Caylor, and Edith Joyner. 

An Update From Friends

Assembling a crew of helpful friends and family is crucial in the  beginning. And while you may be perfectly capable of handling everything that  needs to be done, experts worry that caregivers are often the last ones to take  care of themselves, especially during a time when support is critical. 

Start by making a list of tasks you’ll need help with (this could  be meals that need to be delivered or laundry that needs to be done). Then,  think of all the family members, friends, neighbors, or fellow congregants at  your house of worship who can be a reliable source of support.

 If you’re in the thick of doctors'  visits and are overwhelmed, the laundry should be the last thing on your to-do  list. Don’t be afraid to ask family members and friends to help. Most friends  would gladly offer to bring a meal. Some might do laundry. Family members might  be willing to offer transportation as needed, or may spend the night in the  hospital or in your home. If you need help, ask. Often friends and family want  to help, but don't know what to offer.

 Finding support for  yourself from family, friends, or your faith community will help you guide your  loved one and keep you from becoming fatigued and overburdened. This kind of  support can often come from established communities such as 

, or online support groups. Finding community support as a  caregiver helps to avoid feelings of isolation and allows members to share their  own experiences and collective wisdom with one another.

Use technology to keep everyone in the loop.

 To  most easily update friends and extended family on how the patient is doing when  you’re in the midst of constant doctors' visits, chemotherapy sessions, and  other treatments, consider setting up a website. You’ll receive support and  inspiration by encouraging visitors to post messages, and your friends and loved  ones will be able to easily stay in the loop. Sites such as 

 make it a snap to create a free website that will help connect  friends and family.

A guide and resources for how caregivers can set up a support team to organize help from family and friends, delegate responsibilities, ask for and accept support and favors during their caregiving role through the cancer journey.

Setting Up a Caregiver Team

Being a caregiver is one of the most important—and loving&mdash;things you can do for someone. And, since you’re reading this, you’re likely one of the millions of Americans who are in this exact role. Navigating this new terrain isn’t without its challenges and, while everyone’s cancer journey is unique, there are some caregiving tips that universally apply.

. A good use of this time is to learn about the disease, the range of potential treatment options, and to begin developing a treatment plan. For caregivers, it’s worth it to invest a little time helping the patient with their research, and getting up to speed on the vocabulary.  This will help break down the social isolation that patients can feel, just by widening the pool of people they can talk to about the absurd minutia of the disease. It won’t all be comforting information, but understanding can make it easier to make timely decisions later. The doctor should be able to help guide further education, but doctors have significant schedule constraints and have limited time  to spend with patients. To make the most of this time, caregivers can help hone the questions and if needed, request for additional appointments to review the pros and cons of different treatment options. For really big decisions, make sure you talk with the patient a few days beforehand in case questions come up that require a little more research.

. In the doctor's office, a patient is likely to forget a significant portion of what the doctor says. This makes sense considering the fact that cancer is an emotional topic and a lot of life-altering information is presented. This is where you come in. Listen carefully, take notes, or, with the doctor's OK, record the session to help the patient regain the information when you’re home and beginning to put together an action plan. A caregiver no-no is pirating the conversation with the doctor. Follow the patient’s lead: If you have permission to pursue a dialogue with the doctor, fine. Otherwise, let them make the call. Once the treatment plan has been determined by the medical team, get the plan in writing.

 Surgery, chemotherapy, and radiation are very taxing so you never want to minimize what your loved one is going through or may soon experience. Keep in mind that some people experience extreme nausea and fatigue during chemotherapy and radiation, and others will lose their hair. In general, know that the toll chemo takes is cumulative. The patient may feel fine at the outset of treatment but will likely feel worse before they start feeling better.

. Once treatment has started, the patient may suffer symptoms or side effects from the cancer or the treatment. However, many symptoms and side effects are silently endured by cancer patients. Here’s another entry point for caregivers who may be more likely to notice if the patient is having difficulty with a task or seems especially uncomfortable. Counselors can help ameliorate stress, depression, and other psychological symptoms. Physical and occupational therapy can mitigate pain and infirmity, while dietitians, acupuncturists, and massage therapists can make treatment easier. Social workers can help arrange other needed support services.

. Small gifts, cards, and flowers can help lift your loved one's spirits. Experts say that it's completely normal for patients to experience days where they feel dejected, lonely, afraid, or depressed. While you don't want to overdo it, consider it your job to offer words of hope and reassurance. In addition, allow the patient some time and space to be alone. Relaxation techniques, such as meditation, light reading, walking, or even a movie, can be helpful. Don’t smother or shield your partner from finding his or her own source of strength and inner balance.

. If the patient hasn’t already, they should take care of important legal affairs such as wills, living wills, and medical power of attorney. Even if the cancer has a high cure rate, it's something we should all do at some point. It’s never fun, but it will only get harder as treatment progresses.

. As a caregiver, you want to be sure they feel comfortable expressing exactly how she or he feels. Remember: You don’t want them to feel like they have to feel peppy and positive all the time. During chemotherapy or in the waiting room, for example, take your cues from them and give them permission to be whatever they are in the moment—chatty, sad, depleted, or worried.

 Conflicts about treatment are often more intense when the cancer recurs or is diagnosed at an advanced stage with expectations of shorter survival, experts say. In these cases, the issue of whether to do more chemotherapy or look into other options rises to the surface more quickly. Caregivers may want the patient to keep pushing and try everything possible to fight the cancer, while the patient believes it’s time to stop treatment. Or, a patient may want to pursue alternative treatments, upsetting caregivers who want them to stick to conventional medicine. Regardless of the scenario, it’s up to you to step back and, again, allow your loved one to make the choices that are right for him or her.

 If you’re caring for a parent who lives far away from you, speak with family members about how to best manage care. The question: Who will do what? Or more specifically: Who has the time and inclination to do what? And, if the parent can participate, he or she should. It’s important for the patient to be involved in the dialogue. Quarterly or monthly follow-up meetings should be planned as well to allow for revisions in the caregiving plan. And meetings should be scheduled before a new stage of treatment. Finally, if outside help is needed, be it a home health aide or hospice care, always be honest with the parent. Ultimately, they should maintain his or her independence and control all the decisions about care.

 Purchase a binder and a hole-punch. That way you'll have somewhere to place the unending stream of doctor's notes, bills, test results, insurance records, info about support groups, and other cancer-related pieces of paper that will add up—fast.

 Doing the laundry and stocking the house with comfort foods, like ginger ale, saltines, and soothing teas are great. But you may also be trying to juggle a job, maintain order in the house, and get the kids to school, and this may be too much. If this is your situation, and you feel like you can’t get the basics done, ask for help. Neighbors and friends are usually happy to create a rotating schedule where they pitch in to walk the dog, pick up groceries, or make phone calls. For patients receiving terminal care, respite services for caregivers may be available through a hospice agency.

 Thinking of life after cancer may be an afterthought, especially with the laundry list of doctors’ appointments, household tasks, and outside work that takes its toll on the patient and caregiver. But the transition from active treatment to being a healthy survivor is just as important, including knowing what follow-up visits, long-term effects, and limitations the patient will have in the years after treatment. Survivorship plans have been developed for a number of diseases to help manage health and other related concerns. A caregiver can help by tracking these from day one and by keeping in touch with the medical team during and after treatment.

—Erik Ness contributed to this article.

Generally speaking, cancer does not move at breakneck speed, and it’s important to take some time to process what’s happened. While you may be in the “shock and awe” stage with the patient, they are depending on you to be a source of help and comfort.

Talk it out. Once a diagnosis is confirmed, the caregiver can help the patient by discussing decisions that will need to be made quickly, including second opinions, treatment, and where to be treated. And because cancer is rarely simple, many decisions are made with imperfect information. Depending on the cancer, there may be two or more therapy choices with similar chances of success but different side effects. Balancing the risks of a clinical trial in another city against the comforts of treatment at home can be difficult. When faced with challenging decisions, the patient’s priorities can help make a complicated medical decision easier. While the patient will want to know what you think about treatment options or next steps, the person with cancer should decide what actions to take. What a person wants most from a caregiver is someone who will listen without offering judgments, easy solutions, or platitudes. Your job is to remain calm and not overwhelmingly anxious. Knowing what they want will maintain forward momentum in the absence of perfect information. 

A guide for navigating the challenging territory of caretaking.

A New Role

 the vibrant spinal cord tumor survivor whose essay about her “fairy godmother nurse” Tish Mullen appeared in the Summer 2007 issue, is now a full-time interior design student who dreams of becoming an art therapist. She’s also gotten engaged since she first told her story in our pages, and Tish, who remains a dear friend, is helping her alter her wedding dress.

 was interviewed for CURE—her story appeared in the Winter 2005 issue&mdash;her friends were on her case about finding time for a personal life. Today, her girlfriends still hound this cancer advocate about meeting a guy.

“Just this week, one of my girlfriends had a long conversation with me about dating,” says Felder, a 32-year-old television producer. “Part of it is that I haven’t met the right person,” she says. “But I know that when I do, they’ll accept my advocacy work.”

This is key for Felder, who founded Tamika & Friends (www.tamikaandfriends.org) in response to what she felt was a dearth of information about cervical cancer when she was diagnosed in May 2001 (her diagnosis was followed by a radical hysterectomy, chemotherapy, and radiation).

“When I was out there looking for websites, they were all gray and blue,” she says. “I wanted something warm that would make me feel comforted and good. Our site is like a virtual hug. There might be clouds, but you come here for sunshine.” Last October, she shared her story with 700 survivor delegates as a speaker at the LIVESTRONG Summit in Austin, Texas, in hopes of helping them develop their own action plan.

Felder receives nearly 40 e-mails daily, including notes from women who update her after their surgery and treatment. In turn, the team behind the site—made up entirely of volunteers&mdash;gives women gift cards for groceries and any other help they need. “When I was diagnosed, I had a great job and it still got hard to pay my mor tgage,” Felder says. “I said, ‘If I beat this cancer, this is the way to give back. If a mother needs a day away, we’ll pay for a babysitter.’ ”

To pay for these initiatives, Felder and her team recently held their first-ever cervical cancer walk in Washington, D.C. Nearly 420 walkers showed up garnering $19,000 in donations, all of which will go to help women in need.

 is some kind of special sister. Featured in the Fall 2006 issue, Brenneman spent most of her senior year in turmoil after her younger brother, Josh, now 7, was diagnosed with Ewing’s sarcoma. She was thrust into mini-mom mode, caring for her younger sisters (today, Joy is 18, Jubilee is 15, and Jordan is 13). Regular teenage life seemed to be permanently on hold.

Now, three years since Josh’s diagnosis and treatment, she’s starting to feel like things have settled into a routine. Brenneman, 20, is a junior at Simpson University and Josh is full of energy and spunk, despite a tracheotomy, continued complications with his esophagus, and being fed through a tube. “It was devastating to see what happened to Josh,” she recalls. “People have said, ‘Isn’t it time for you to move on from this?’ And I tell them that I try not to dwell on the hard times, but what happened to him has shaped who I am as a person.”

Still, when she thinks back to her life three years ago, she’s sometimes surprised she was able to do it all. “It’s one of those things where you never know how you’re going to react until you’re put into that situation,” she says. “You take it moment by moment, and you take it in little chunks.”

What really has helped, she says, is SuperSibs!, an organization that raises awareness of the problems facing siblings of children with cancer. “It’s an amazing organization,” she says. “They send me a care package each month with a newsletter filled with writing from other siblings of cancer patients. Sometimes they’ll send a journal to write down thoughts. It was a lifesaver. I don’t know what I would have done without it.”

, 40, knows what it’s like to be a childhood cancer survivor. He had rhabdomyosarcoma when he was a teenager and, in August 2006, battled a secondary tumor caused by the high-dose radiation he received decades ago.

Firsthand experience made him the ideal candidate to be executive director of First Descents (www.firstdescents.org), a nonprofit that provides outdoor adventures for young cancer patients. Since Goldberg wrote about his experience in CURE’s Survivors Issue in 2006, he left his position at the Lance Armstrong Foundation and moved to Vail, Colorado, where First Descents is based. “I was very lucky,” he says. “There were days when I ran home after chemo.”

His goal: To practice what he preaches. Goldberg and Heidi Adams, the founder of Planet Cancer, set up the first young adult track at CURE’s Patient and Survivor Forum this past September in Chicago. “I feel that life is hard, but we have no control over our situations,” he says. “Whether you have cancer or not, you’re going to deal with something sometimes that’s life or death—it’s just a matter of when. The hardest part is not knowing.”

His job is in keeping with his personal mission. First Descents instills confidence and fun for young adults with cancer. The adventures begin on flat water, and by the end, most participants are paddling Class III rapids, Goldberg says. “We have people on treatment, out of treatment, and amputees on our trips. It’s about making them realize they’re not as fragile as they think. Cancer is a part of their identity, but it doesn’t have to define them. It’s kind of the way I try to live my life.”

 always loved riding, and owning a horse was a dream of hers. So when the 67-year-old chronic lymphocytic leukemia survivor locked eyes on Clover, an Irish hunter, she knew she had found the horse for her.

Since she was profiled in the Winter 2006 issue, she has visited him every day. She grooms and brushes him, cleans his feet, and spends time with him. And then there are the lessons—she’s working up to doing some jumping with him. “He’s very kind, and he has a puppy dog personality&mdash;he just doesn’t know how big he is,” she says.

For Pannullo, riding fills her with an intense feeling of freedom. “These animals are so beautiful,” she says. “They have a grace in movement that’s just an incredible thing to watch.”

As for her health, she feels good. She goes for checkups every two months and was just told she can extend those visits to every three months. She also goes in for immune boosters every four weeks, something she has done for six years. Other than that, she’s medication-free. “The leukemia is back because I only experienced a partial remission this time, but it’s quiet,” says Pannullo, who was first diagnosed in 1980. “We know from my history that I can go for long periods and it remains quiet.”

For now, horses provide all the healing she needs. “I go to the stables and I don’t think of anything else,” she says. “I feel lucky I have Clover in my life!”

, are determined to build breast cancer awareness within the Navajo community. Since they were profiled in the Winter 2005 issue, they’ve stayed focused on a critical mission: early detection in a population that has the poorest fiveyear survival rate of any ethnic group in the United States. To put this mission into motion, the two are about to release their third Navajo-language video with English subtitles. This one focuses on lymphedema.

“Some women will never develop lymphedema, but we don’t want them to be surprised if they have a problem,” says Robinson (at right in photo). The video—done in partnership with the Northern Navajo Health Promotions Depar tment&mdash;includes preventive teaching, such as exercises, massage, and compression wrapping of the arm.

And Sandoval is busier than ever. The breast cancer survivor is in her second year of a three-year term on the Susan G. Komen American Indian/Alaska Native National Advisory Council. “Our primary function is to advise the Komen organization on how to work with Native American women who are dealing with breast cancer issues,” she says. Her biggest challenge right now is finding more native Navajo volunteers for Reach to Recovery, an American Cancer Society breast cancer support program she has worked with since 1993.

“At one point, we were down to two volunteers and I couldn’t handle the referrals,” she says. “We now have seven and I have requests from more women to be trained. Still, I need more volunteers from the community. I had a woman six months ago who was in the hospital. The doctor was trying to talk to her about chemo and she didn’t understand what he was saying. I explained it to her in Navajo and the doctor was grateful I was there. If we can put a light in someone’s eye about why treatment or surgery is important, it will save their life. That’s a big thing for me.”

Updates on Rachel Baumgartner, Tamika Felder, Jasmine Brenneman, Allan Goldberg, Arlene Pannulla, and Fran Robinson and Nellie Sandoval.

Lambeth Hochwald

An Update From Friends

Setting Up a Caregiver Team

A New Role

An Update from Friends

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