Touched by Cancer http://www.touchedbycancermagazine.com A practical guide to living with cancer Fri, 03 Aug 2012 13:29:01 +0000 en-US hourly 1 http://wordpress.org/?v=3.4.2 July/August 2012 Issue http://www.touchedbycancermagazine.com/2012/08/julyaugust-2012-issue/ http://www.touchedbycancermagazine.com/2012/08/julyaugust-2012-issue/#comments Fri, 03 Aug 2012 13:29:01 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1037 July/August 2012 Touched by Cancer FEATURES

Asking for and Receiving Help
Many cancer survivors wish to remain independent and battle the disease privately, and that’s great, but don’t be afraid to ask for help when you need it. Because at some point, you probably will.

25 Ways Someone Can Help You
When people learn of your diagnosis, many will ask if there’s anything they can do to assist. With the help of this list, you won’t have to put much thought into giving them an answer.

Behind Closed Doors
Your sex life will likely take a hit during the course of your treatments. Here’s what to expect and how to ensure you can continue to enjoy an intimate, satisfying part of your normal life.

All Tied Up
The confusing and controversial—but yet comforting—world of cancer awareness ribbons.

 

PROFILES

Keeper of the Flame
For 19 years, Frank McCann has run the most successful celebrity golf tournament in the world. He does this to help raise important money for cancer, but also to honor his best friend, Jim Valvano.

Pretty Amazing
Dr. Lisa Tolnitch has just about reached celebrity status in the local cancer world, renowned for her lifesaving work in and out of the operating room.

Call to Duty
When Lt. Col. Joe Barto speaks, people have always listened, whether it was in battle or in civilian life as a consultant. Vocal cord cancer threatened to silence him, but with some help from his inner circle—including a local legendary basketball coach—he found a way to have the last word.

 

DEPARTMENTS

About Touched by Cancer
Who we are

From the Editor
Up to my (buttocks) in alligators

Guest Editorial
We’re all in this together

Letters
Readers continue to respond

News
Reports from a major oncology conference, plus local happenings

Calendar of Events
Fundraising stays hot

Resources
Find treatment centers, support groups and more

TBC’s Editorial Advisory Board
Meet the local leaders who help shape the magazine

 

SECTIONS

From the Doctor
Advances in prostate cancer

From the Navigators
Where to turn for help

Integrative Medicine
Integrating integrative medicine

Faith
Can I please help with that?

Finance
Cancer’s financial wrath

Childhood Cancer
Prepare to accept help

Lifestyle
Ready for a head-shaving party?

Technical Difficulties
Early detection of oral cancer

End-of-Life Issues
The gift of helping

 

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We’re All in This Together http://www.touchedbycancermagazine.com/2012/08/were-all-in-this-together/ http://www.touchedbycancermagazine.com/2012/08/were-all-in-this-together/#comments Fri, 03 Aug 2012 13:09:12 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1005 Mary Lawrence

Mary Lawrence

We can’t run or hide. Cancer is everywhere. I don’t know anyone who hasn’t been affected by this disease. As president and CEO of Cornucopia Cancer Support Center, and a member of Touched by Cancer’s editorial advisory board, cancer is what I do. And on a personal level, my sister is a cancer survivor, and my dad is battling a stage IV cancer.

We’re fortunate to live in a community that boasts some of the best clinical comprehensive cancer centers in the nation. They focus on treatment of the disease and research for cures. What would we do without these incredible centers of excellence?

But there are many other grassroots and community-based groups that offer the complementary and integrative therapies, support and resources that enhance a person’s quality of life during treatment and into survivorship. These groups, like Cornucopia, focus on the mind, body, spirit and information needs of people affected by the cancer epidemic.

Touched by Cancer magazine has been a blessed gift to the cancer care community and anyone journeying with cancer. It’s a resource that documents the clinical, emotional, physical and spiritual passages of survivors and their loved ones, through their personal stories of shock at the point of diagnosis and their rollercoaster rides of confusion, loss of control, fear, pain, and yes, thankfully, compassion, love and hope. TBC captures the cancer story and shares it with such sensitivity, dignity and untold generosity.

As a community it’s important that we work together and acknowledge the legitimacy of each other’s roles in the treatment and care of cancer patients and their loved ones. The fact is, community organizations pick up where the clinical institutions leave off—once treatment phases are complete, when lives have been forever changed and those touched by this catastrophic disease are left feeling isolated and uncertain about their futures. They need magazines like Touched by Cancer to remind them that they can live a full and joyful life after cancer. They need to read the success stories of others who have been through the same experience and come out whole and filled with joyful anticipation about their futures.

We need businesses and the large medical institutions to get behind our work and invest in our success in tangible ways—especially through financial support. After all, survivorship outcomes have a lot to do with how people cope before, during and after treatment. Major medical institutions can rest assured that their patients are being cared for long after they leave the hospital campus. Nonprofits and publications like TBC are the beacon of hope for patients and their families. We help them “get busy living” again with confidence and strength.

We need the area’s hospitals and health-related businesses to invest in our success, because we are taking care of their patients and consumers too. To put it bluntly, it is our work that helps contribute to the success stories of such businesses and institutions.

TBC gives hospitals huge supplies of its magazine for their patient and visitor waiting areas—for free. It’s time that hospitals return the favor by supporting Touched by Cancer magazine through paid advertising, and financially supporting community organizations that are helping their patients cope with cancer. That kind of support will cure a lot more than just the disease.

 

                Mary Lawrence

President and CEO

Cornucopia Cancer Support Center

919-401-8500

mlawrence@cancersupport4u.org

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Advances in Prostate Cancer Offer New Hope http://www.touchedbycancermagazine.com/2012/08/advances-in-prostate-cancer-offer-new-hope/ http://www.touchedbycancermagazine.com/2012/08/advances-in-prostate-cancer-offer-new-hope/#comments Fri, 03 Aug 2012 13:00:44 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1011

By Amit Mehta, M.D.

A common saying regarding prostate cancer is that patients will “die with prostate cancer, but not from it.” This is largely true for the majority of the approximately 200,000 new cases diagnosed yearly in the United States, but the prognosis is quite different among patients with advanced and metastatic prostate cancer. Of these cases, a significant fraction is at risk of the cancer threatening their lives. For example, of patients on the original clinical trial of docetaxel chemotherapy, the three-year survival rate was approximately 18.6 percent. Fortunately, over the past two years, a plethora of new therapies has emerged, significantly changing the landscape of treatment and prognosis.

One of the major early breakthroughs in advanced prostate cancer that stops responding to hormonal therapy (i.e., castrate-refractory prostate cancer) was that of docetaxel chemotherapy. This was the first agent that showed a survival advantage in this disease setting. While docetaxel can be quite effective in controlling prostate cancer, not every patient is medically able to receive chemotherapy. This opened the door for the exploration of alternative approaches, including oral medications and immune therapy. The latter approach of immunotherapy is being developed in a few principal ways. The current Food and Drug Administration-approved treatment in this class is sipuleucel-T (Provenge). With this therapy, a patient’s own white blood cells are acquired by leukapheresis (generally done in blood banks or Red Cross centers), and then the cells are “activated” by a combination of molecules, including prostatic acid phosphatase. Once accomplished, these cells are infused back into the patient. The standard protocol of three infusions showed a survival advantage, with the Provenge group living more than two years.

Multiple oral medications for advanced prostate cancer are honing in on a significantly better suppression of testosterone, which is a key growth factor for this malignancy. Abiraterone—which is FDA approved—has already shown a survival benefit when given after chemotherapy. The median survival was 14.8 months compared to 10.9 months on placebo. Another agent, MDV3100, has also been reported to have a survival advantage, as presented at the 2012 ASCO Genitourinary Cancers Symposium. The results have shown a median survival of 18.4 months versus 13.6 months for the placebo, when given after docetaxel. A third medication, TAK700, is in late-phase trials and is being studied both before and after chemotherapy.

At Regional Cancer Care, we are passionate about prostate cancer treatment. By embracing this new armamentarium [resource], we strive to personalize treatment options for each patient. Again, not every patient has a health history that would allow for chemotherapy, and some patients may be better suited for approaches such as immunotherapy. In this vein, our group was among the first sites in the country to offer Provenge immunotherapy.

In addition, we strongly support having cutting-edge clinical trial therapies available for patients through our outpatient treatment centers. Trial selection is very carefully done, so only high-quality clinical trials are offered to patients. Typically, these are phase II and III studies, meticulously selected and discussed through the U.S. Oncology Research Genitourinary Cancer Committee, of which I am a thankful to be a member.

We are fortunate to be able to conduct clinical studies in the outpatient setting, so hopefully patients can receive some of the newest treatments while enjoying the comforts of home. This is made possible through the U.S. Oncology Research Network, a national network encompassing more than 1,000 oncologists.

With all of these promising options, a key step is finding the best approach (or sequence of treatments) for a given individual. Via our multidisciplinary tumor board, all possible therapies, including FDA-approved medications, clinical trials, surgery and radiation, are integrated to formulate an optimal treatment plan. By bringing the fruits of such collaboration to the clinic, we endeavor to provide the most up-to-date, evidenced-based care to each patient.

Our efforts in the fight against prostate cancer are only possible with the hard work of the entire team at Regional Cancer Care. This includes our clinical and research nurses, medical assistants, physician assistants and nurse practitioners, as well as our team of physicians. On the wave of these new therapeutic strategies, we believe the future is bright for prostate cancer patients. We are pleased and honored to evaluate and care for patients with prostate cancer at any of our Regional Cancer Care clinics.

— By Amit Mehta, M.D., Regional Cancer Care

 

 

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Asking For and Receiving Help http://www.touchedbycancermagazine.com/2012/08/asking-for-and-receiving-help/ http://www.touchedbycancermagazine.com/2012/08/asking-for-and-receiving-help/#comments Fri, 03 Aug 2012 12:47:16 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1007 “What can I do to help?”

That’s a question you’ll hear often when you share the news of a cancer diagnosis. But it’s surprisingly hard to answer when your mind is whirling with shock, anxiety and complex medical data. Right after your diagnosis, all the concern and questions don’t make you feel better—they make you think one thing: You are sick. You’re so sick, in fact, that many people are going out of their way for you, and how can that be good? It’s unsettling.

Beyond that, some individuals dislike being treated—in their view—as though they are different, and others believe requiring assistance will cast them as being needy.

“All the people offering to help is a reflection of your reality,” says Nyra Hill, a licensed clinical social worker at Main Street Clinical Associates in Durham. “Those offers make you feel that you are very sick. And being at the center of attention makes many people uncomfortable.”

So, in the first phase, the sudden offers and donated meals can actually heighten the stress of your situation, especially if someone stopping by with dinner lingers with a concerned expression and asks for medical details—a draining conversation you probably don’t want to have. You might even feel you must put on a brave face to make your guest feel better.

That’s part of the reason why many cancer survivors wish to remain independent and/or to fight the disease more privately with just family, and that’s certainly their right, but don’t let pride stop you from accepting the assistance that could dramatically improve your life.

The first piece of advice, for those who are unaccustomed to receiving help, is to be careful in how you release the news of your diagnosis. Camille Andrews, whose partner, Marcel Fortier, lived 14 years with stage IV non-Hodgkin lymphoma, cautions against telling everyone you know at one time. You may reach a point where you don’t want one more “I-just-heard-the-news” phone call.

“Be slow in how you let the information out,” Camille says. “Many people react to the news in ways that make themselves feel better. They bombard you with caring gestures and information that you don’t really want. And you don’t know how long that journey will be, and most friends won’t hang with you that long. What you need is a few people you can be truly honest and vulnerable with.”

As you move into phase two, when your treatment plan is laid out on a calendar and your thoughts have settled, the overflow of generosity may take on a different meaning.

“The other end of the continuum from being reminded how much you’re sick is being reminded how much you’re held [by loving friends],” says Nyra, who is also a breast cancer survivor. “I never knew how much I had in my life until I was sick. Looking at both sides makes the sickness reality more bearable. Over time, it makes being sick less negative, and the person becomes more receptive to help.”

By phase two, the phone calls, note cards and donated meals have dropped off, but you still may have needs for child care, rides to appointments or the diversion of nonmedical conversation. How do you ask for help when people have stopped offering? This is especially difficult for people who in general like to give to others but are uncomfortable receiving.

Some patients don’t like the feeling of obligation that asking for a favor entails. They worry that the person asked won’t say no if they need to, that there’s no way they can pay back the favors. “People don’t do kindnesses to be thanked,” emphasizes Amanda Romaniello, a licensed professional counselor at Family Centers in Darien, Conn., “but [if you feel the need] you can express your gratitude in small ways. Write a thank-you card, or give them a gift card for a coffee shop they like.” You’ll never be able to pay back exactly what you received, but you’re feeding the deeper caring connection that enriches both giver and receiver.

 

Kindness Goes Both Ways

I was known for being capable and competent and, when diagnosed with breast cancer, didn’t want to show my fears. On one occasion, I was going to be alone at home for several hours after a chemo treatment. I would probably sleep, but I didn’t want to be alone. After worrying about it, I called a book-group friend and asked if she’d read at my home while I slept. Of course she would. In worrying, I had underestimated my friend’s kindness. Would I have done it for her had she asked? Certainly. Which brings us to a good measuring tool that will make you feel more comfortable about asking a favor: Would you do what you’re asking for someone else?

“The biggest problem is that people don’t know what to do,” says Amanda. “People who care about you are willing to do what you want them to do, however small the task. But the recipient needs to give the helpers guidance.”

Most people like to help and will help if you let them know what you want. “I ask my clients who resist asking for help to remember what it felt like to help someone else—how meaningful it was to be helpful,” Nyra says.

Allowing friends to do things that help you is actually a gift to them, and you open the door for a caring connection that you might not have shared before. When you let them be helpful, you are giving them an emotional reward.

Sometimes one person will help set up a care circle—a network of helpers the cancer fighter can call upon for particular tasks. “I had the best experience of that,” Nyra remembers. “They modeled it on the book Share the Care (www.sharethecare.org), and a number of friends signed up for what they wanted to do—give rides to my children or sit with me in chemo. I wanted someone with me in chemo, and I had a list of people who said they’d do that.”

Today there are many online resources to help coordinate such care circles. For example, Meal Train (www.mealtrain.com) allows a person who needs help with meals to register (or be registered) online, complete with their likes, dislikes and foods they can’t have. A Web-based calendar is thus created that allows participants to sign up to provide meals without troubling the sick person with phone calls.

Of course, not everyone has an “organizer” friend or family member who will help arrange such intricate plans. I didn’t. My family did most of what I needed, but I grew happier to accept an offer of help. I especially liked the company of those who were familiar with medical issues, but who could talk about something else. After a while, I could do chemo alone, but some tests unnerved me and when my husband was at work, I valued a companion for them. I began to ask for help a little more often.

I found that if I asked people to do something they’re particularly good at, they’re even more eager to help. When my white-cell count was low, I needed to give myself a daily shot for two weeks. The prospect of this upset me, but my neighbor, Teresa, is a nurse. She wasn’t available for errands and didn’t cook much, but she was happy to be able to help me in this way that was monumental for me but simple for her. She gave me a shot each morning before she left for work. Another non-cooking friend was a bookkeeper. I asked if she would please help me sort out the bills and organize my insurance statements. She did, and gladly.

After the shock of receiving a cancer diagnosis, you’re going to need some time to digest everything that is being thrown at you, and that very much also includes figuring out in which areas you could use some assistance. If people are offering to help, but you don’t have anything for them immediately in mind, say, “Thank you. That offer means more than you know. I’m still trying to wrap my head around all this, but once I do I’m sure I will find some things that I would really appreciate your help with.” Then once your needs begin to come clear, you can begin to reach out with specific requests to the people who offered to help. Once you can express specific needs and can allow loving friends help you in useful ways, your spirit will be enlivened and encouraged, which will strengthen your body for its fight.

 

Caring Messages

When news of someone’s cancer diagnosis begins to spread, some people/families find it too wearing to reply to every concerned caller, or it may be that the person is getting treatment away from home. In such cases, there are several great online options where a single website is created that is devoted to the patient, where one update can be viewed by all who are concerned. One great example is CaringBridge (www.caringbridge.org), a nonprofit, online organization available for communicating information and good wishes. The cancer family registers and provides what information they wish to reveal, then the patient or family members can post updates at whatever intervals are comfortable. Anyone—near or far—can sign in to read the information and can post encouragement and good wishes to the patient and the family. What is particularly helpful is that the patient can read the messages at the most suitable time, and energy is not spent telling the same information to many callers.

“CaringBridge is named very well,” says Camille Andrews. “It bridges isolation, separation and the sterility of the situation, and it gives people a bridge into your situation. I found help in allowing people to see a part of me they maybe hadn’t experienced. I used it to show something to others too—I ended every CaringBridge message with a reminder to people to look at what they have in their lives. It was helpful to me to say, ‘Take from your caring goodness to me not sadness, but a change in the way you see your own life.’”

— BY GINNY TURNER

 

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Integrating Integrative Medicine http://www.touchedbycancermagazine.com/2012/08/integrating-integrative-medicine/ http://www.touchedbycancermagazine.com/2012/08/integrating-integrative-medicine/#comments Fri, 03 Aug 2012 12:40:08 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1009 Rather than writing another straightforward article that deals with complementary therapy this month, I thought it would be constructive to look at it from the practical side—by creating a fictional patient. Hopefully by looking at her and seeing how she integrated complementary therapies into her conventional care, it will give you some ideas as to how to weave complementary therapies into your care as well.

Audrey is a 48-year-old woman who was recently diagnosed with breast cancer following an abnormal mammogram and biopsy. After consultation with medical, radiation and surgical oncologists in a multidisciplinary clinic, she decided to undergo a lumpectomy with sentinel lymph node biopsy. Pathology results from her surgery revealed a 1.8 cm invasive ductal breast cancer with two sentinel nodes (and no other positive nodes at subsequent axillary lymph node dissection). The tumor was estrogen and progesterone receptor positive and positive for overexpression of HER2/neu. There was no evidence of metastatic disease. Following her surgery, it was recommended that Audrey undergo six cycles of chemotherapy with taxotere, cyclophosphamide and trastuzumab, after which she would undergo radiation to the breast. Trastuzumab would continue after completion of the taxotere and cyclophosphamide for a total of one year. At completion of radiation she would also start five years of tamoxifen as she is premenopausal.

Audrey told her medical oncologist that she had an interest in using complementary therapies during her cancer treatments and was referred to an integrative practitioner. That practitioner worked closely with her team of physicians and made suggestions over the course of her treatments that included some of the basic categories of complementary medicine: mind-body therapies to help reduce anxiety and improve mood; nutrition, supplements and botanical therapies; manipulative therapies including acupuncture, massage and exercise; and energy therapies such as reiki, for example.

Audrey was immediately scared by the diagnosis of cancer, and the thought of surgery and the treatments that would follow. She was depressed, anxious and fearful about the future, and had difficulty sleeping. Her integrative practitioner taught her a breathing technique to use whenever she started to feel anxious and overwhelmed. Audrey learned to sit quietly and take deep breaths that expanded her chest and abdomen, slowed her breathing and relaxed her shoulders. She found that with this technique of slow, deep breathing and relaxation, it was literally impossible to stay anxious. Focusing on one’s breathing in this way is the beginning of mindfulness—one type of meditation. Best of all, she could do it anywhere and there were no side effects. Prepare for Surgery: Heal Faster is a book written by Peggy Huddleston, a psychotherapist and theologian, which was also helpful to Audrey. The book describes mind-body therapies that can be used to reduce preoperative anxiety as well as reduce the amount of postoperative pain medicine that may be required. There is a CD included with the book that uses hypnosis to reinforce these healing thoughts and also to promote decreased blood loss during surgery and promote healing afterward. Audrey tried to listen to the CD twice a day for the two weeks prior to her surgery, which is optimal, but even doing it for a shorter period would be helpful.

Audrey’s surgery went very well and after adequate healing, she began chemotherapy. Her oncologist had her attend a class where a nurse taught attendees about chemotherapy drugs, potential side effects and treatments. A nutritionist taught the class ways to make sure they got enough calories, fat, protein and fiber during treatment. Audrey learned that eating four to five smaller meals a day would help keep her energy up as opposed to three larger meals, and she discovered recipes for fruit and vegetable smoothies where she could add whey powder, yogurt or peanut/almond butter as additional sources of protein and healthy fat.

On days where she received chemotherapy, Audrey brought her iPod, which was loaded with some of her favorite music to help her relax and pass the time. She also had a guided imagery recording that calmed her, helped her to imagine the chemotherapy and her white blood cells working together for healing and encouraged her to think of a time in the future when she would be restored to health.

The TCH chemotherapy regimen is not one that causes a great deal of nausea or vomiting, but Audrey did suck on ginger lozenges prior to her treatments and received anti-nausea medicines prescribed by her doctor. She also drank chamomile tea some evenings to help settle her stomach. Paresthesias—where you get the “pins and needles” feeling, numbness and/or the affected body part “falls asleep”—are a well-known side effect of taxotere, so Audrey saw an acupuncturist who was able to give her prophylactic treatments to prevent severe paresthesias. Acupuncture was also useful in treating insomnia and keeping her energy up during her course of treatment. Had she needed it, acupuncture would have also been useful in preventing chemotherapy-induced nausea.

After she completed taxotere and cyclophosphamide, Audrey began radiation treatments. Once again she was anxious with the first few treatments, and while on the table receiving treatment, she used guided imagery to imagine herself in a peaceful setting well away from her cancer treatments.

Audrey continued trastuzumab through the six weeks of radiation, and after completion of radiation, tamoxifen was added to her regimen. She developed some mild hot flashes and found self-hypnosis and acupuncture helpful for both. She also had some mild lymphedema, but a lymphedema massage therapist was able to teach her self-massage techniques and fit her for a sleeve that reduced the swelling.

The integrative practitioner also made recommendations about diet and exercise for Audrey based on guidelines published by the American Institute for Cancer Research (AICR), which are available at AICR.org. The recommendations included a goal of 30 minutes of daily exercise. During her treatments, Audrey didn’t usually have the energy to do this, but even a five- or 10-minute walk when she was able improved her morale and energy. Dietary recommendations included eating more of a plant-based diet with ample vegetables and fruits of every color, whole grains and legumes, decreased red meat consumption and avoidance of processed meats.

The integrative practitioner suggested Audrey read Breast Cancer: Reduce Your Risk with Foods You Love, by Robert Pendergrast, M.D. Cancer survivorship begins the moment you receive the diagnosis, but patients often become more anxious when all their active therapies are over, not realizing there are lifestyle changes that may reduce the risk of recurrence of an initial cancer or development of another type of cancer. Dr. Pendergrast’s book made exactly that point, and he also encourages eating a full color spectrum of vegetables and fruits, using exercise to maintain a healthy weight and taking helpful supplements.

Though Audrey is a fictional patient, the benefits of meditation, breathing for relaxation, self-hypnosis and guided imagery, acupuncture, diet and exercise are very real. I hope anyone reading this who has been touched by cancer will be open to trying complementary therapies to lessen side effects and support themselves through conventional medical care.

 

 

For more information on integrative medicine, check out Touched by Cancer’s back issues:

 

March/April 2011

Bringing it All Together

 

July/August 2011

The Power of Hypnosis

 

Sept/Oct 2011

The Power of the Mind & Body

 

Jan/Feb 2012

Expressive Art Therapies

 

March/April 2012

Nurturing the Body & Mind

 

— By Sharon Taylor, M.D., Duke Raleigh Hospital


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The Voice http://www.touchedbycancermagazine.com/2012/08/the-voice-cancer-tried-to-silence-lt-col-joe-barto-but-failed/ http://www.touchedbycancermagazine.com/2012/08/the-voice-cancer-tried-to-silence-lt-col-joe-barto-but-failed/#comments Fri, 03 Aug 2012 12:28:01 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1014

Joe Barto and Mike Krzyzewski

Whether in combat during Desert Storm or running a successful consulting business, Joseph Barto III is a man used to being in charge—a leader both by nature and by training. He is greatly respected and admired among those who know him, both personally and professionally.

During his long military career, Joe spent much of his time preparing and training to combat enemies, but he never anticipated the most formidable enemy he would ultimately face: cancer. Fear was not a usual part of the equation for Joe, but he quickly learned a cancer diagnosis can instantly propel even the strongest person into a daunting world of panic and uncertainty.

Throughout his adult life, Joe’s voice had always been an instrument of his leadership. His speaking ability and style was one of confidence and self-assurance. His voice was an indispensable tool during his military service, as it was after he retired from the military and successfully transitioned into the private sector.

In 2002, Joe started a consulting business, Training Modernization Group (TMG), a program management services firm that specializes in workforce productivity systems. Although he was located in the Tidewater area of Virginia, his work with partners across the country was in high demand. The amount of talking he did on a daily basis for work was significant, and his voice had always served him well. It was undeniably an integral part of his identity.

“In 2008, I began having problems with my voice sounding hoarse and weaker than usual,” says Joe. “Initially I dismissed it, but eventually I had to seek help from a local ear, nose and throat doctor. The doctor originally attributed the problem to voice overuse and strain from my constant speaking engagements, but he took a biopsy just to be sure.”

 

Out of his Comfort Zone

The results came as a horrible surprise: stage I vocal cord cancer. As with most people receiving such a diagnosis, confusion and fear set in. He was overwhelmed by all that was being thrown at him. Decisions had to be made quickly, such as where to seek medical care and what course of treatment to pursue.

Anyone thrust into such a situation is invariably going to find him or herself in a world of uncertainty, but Joe was not used to uncertainty of any kind. He is normally pragmatic, level-headed and unflappable, all qualities that served him well in his ascension through army ranks, retiring as a lieutenant colonel.

Serving in both peace and wartime, Joe held several prominent positions within the military, in addition to being a published author, writing on the topics of leadership and performance improvement. He has always been driven by his skills of logic, analysis and reasoning. After his cancer diagnosis, though, he was operating primarily from an emotional standpoint of fear—for the first time in his life.

Even in combat, fear was never a factor for Joe, a fact he attributes to his acute sense of situational awareness. That awareness allowed for a sense of control. With the cancer diagnosis, however, Joe was plunged into an unfamiliar realm where his lack of situational awareness left him feeling powerless. Since the logistics were not clear to him, he had to rely on instinct—and his trust in others.

Joe was used to being the one giving the orders. “I was used to “being in charge and having control but cancer necessitated the relinquishment of some power to others,” says Joe. This was counterintuitive to him and proved quite difficult at various junctures along the journey.

 

From Coach to Confidante

For the first time in his life, Joe found himself facing a battle for which he was not prepared. He was unsure about what to do and where to go, but he knew he needed to find out immediately. Since he didn’t know the answers, his next step was to ask himself who he knew that might be able to help. It had to be someone he trusted implicitly. The answer was simple: his old West Point basketball coach and longtime friend, Mike Krzyzewski.

Joe was a teenager and Coach K—now famously the coach at Duke and the all-time winningest coach in the sport’s history—was only in his late 20s when they first met at the U.S. Military Academy. They reconnected in 1993 and have had a strong relationship ever since. Coach K strongly recommended the Duke Cancer Institute and connected Joe with the right people, convincing him to travel to Durham for his treatments. The 3.5-hour drive was well worth it.

His old coach, however, did not stop there. Coach K continued to be an unwavering source of support and encouragement throughout Joe’s battle with cancer. They communicated largely through email while Joe was having problems with his voice, their exchanges revealing a close personal bond and mutual respect.

“I have known Joe since he was a cadet at West Point and played on our basketball team,” says Coach K. “He was a fighter then and a very positive person. It does not surprise me that Joe has fought cancer in such an amazing fashion.

“I am proud to be his friend and certainly very proud of him.”

 

A Tale of Two Titans

It was at Duke that Joe met Dr. Richard Scher, professor and associate chief of otolaryngology, a highly regarded and immensely skilled head and neck surgeon. Dr. Scher is every bit the alpha male as Joe and just as confident in his ability to eradicate the cancer as Joe was of his own leadership skills.

Dr. Scher insisted on having his own pathology department analyze the biopsy sample, and his diligence proved prophetic. The original finding was squamous cell carcinoma in-situ, meaning noninvasive. The new pathology, however, revealed that it was, in fact, invasive, which completely changed the game.

Joe wanted a definitive plan, a course that would go precisely from point A to point B. Unfortunately, that was not the way the experience unfolded. Despite Joe’s efforts to persuade Dr. Scher to lay out a definitive plan, Dr. Scher needed the freedom to adjust along the way. This was frustrating to Joe, someone who had unwavering views of planning, someone who wanted to know where the sweet spot was, someone who needed to see strategy and planning meet seamless execution.

Despite Joe’s discomfort with not having a level of specificity he would have preferred, he and Dr. Scher were on the same page about the goal: complete cancer removal. Joe’s specific type of cancer had a very high cure rate, and Dr. Scher believed that surgery was the best route to take—although the treatment would have serious repercussions for his voice. Given the nature of Joe’s work, this was a disheartening idea, yet Dr. Scher stressed the top priority was getting rid of the cancer, and that at a later time he could do another surgery to improve Joe’s voice.

“Dr. Scher performed two surgeries that did successfully remove the cancer,” says Joe. “Unfortunately, one vocal cord needed to be removed, and my voice quality was affected. But true to his word, when the time was right, Dr. Scher did a third surgery to restore my voice.”

A procedure called a vocal cord thyroplasty not only allowed for better voice functionality, but it also did wonders for Joe’s psychological outlook.

“There were times I walked out not happy, but there was never a time I wished I was with someone else,” Joe says of his relationship with Dr. Scher. “Over time we forged a deep connection and have become good friends.”

Dr. Scher, likewise, says he both admires and respects Joe, and says he’s “honored and blessed” to have been his surgeon, and that Joe provided “a very positive and important aspect of my professional and also social life.”

Joe needs to continue follow-ups with his condition, so he and Dr. Scher will be in each other’s lives for a long time.

“I think I have many more things to learn from him,” says Joe, not referring to medical matters.

 

Less Talking, More Listening

At various times along his journey, Joe worked with Ann Cyptar, a talented voice pathologist in his area. Again, Joe has to relinquish control and put his trust in someone else and bank on her expertise. Understandably, he was incredibly frustrated by the damage done to his voice and his struggle to regain his speaking ability.

“I could only speak for short periods of time and in quiet settings so I could be heard,” he says. “The everyday background noise we all encounter was an impediment, but I learned to work around it.”

A voice amplifier was an option he initially resisted, but eventually he accepted the idea to assist him when speaking to large groups.

Ann taught him exercises and techniques that would lessen laryngeal muscle tension. After he had the corrective surgery to restore his voice, Joe continued to strengthen his voice. Due to his work with Ann, he is now cognizant of tendencies that cause vocal strain and strives to avoid them.

“Speaking is not something most people consciously think about unless they have a problem,” Joe says. The same could be said for listening. Though it is not something he would have ever chosen for myself, he found an unexpected upside from being “forced into a situation where I could not speak as easily or often as I would like.”

Joe told Ann that he became a better listener. You could say he was more active in his listening, paying greater attention to what others had to say. Having good listening skills may be a more understated strength than impressive speaking; however, it’s a crucial component to successfully running a business and being a good friend and family member. Joe managed to take a negative and turn it into a positive.

 

Family Matters

Another person who was with Joe every step of the way was his wife, Tricia, with whom he just celebrated their 34th anniversary. Tricia is a leader in her own right, moving seven times in 20 years as part of a military family. She has always kept things under control on the home front, caring for their four sons while Joe was away training and serving in Iraq during Operation Desert Storm. Tricia knows Joe better than anyone, and he credits her with keeping everything on track from the time of diagnosis through his recovery.

“I could never have made it through without my wife,” he says.

Tricia is no shrinking violet, of course. She is every bit as strong and determined as her husband. Joe’s cancer came during a time of other family challenges and grief, namely the illness and death of both of Tricia’s parents. Yet she was still able to be present as a wife and mother when Joe was going through his cancer battle.

Tricia, importantly, heard things differently than her husband during their meetings with Dr. Scher. While Joe understandably focused on what he perceived as the more positive aspects, Tricia absorbed many of the things Joe was less open to. Although she never wavered in her belief that Joe would be cured, she was more the realist about the information Dr. Scher was imparting to them.

Another important factor that helped the Bartos get through Joe’s cancer journey was the family’s collective sense of humor. Even when times were tough they found something to laugh about.

Tricia relays a story about when Joe had to use a dry erase board to convey short, simple thoughts. “One time he was writing for a long time. Our youngest son said, “So, Dad, what are you doing over there? Talking to yourself?” It cracked everyone up, and things like that always lightened the mood.

After Joe’s surgery successfully restored his voice, he called Coach K from the car on the way home from Duke, to give him the good news. Joe recalls, “As our conversation closed, I told him that I thought my next career was in the country music business with Nashville as my next stop and he had some other sage advice that I’ll not repeat but made me laugh out loud. Suddenly the car swerved and I looked over at Tricia to see if everything was alright and she was crying. I asked her what was the matter and she said, “That is the first time I have heard you laugh in seven months.” We cried together.

As with all effective leaders, Joe continues to learn and grow from all his life experiences. Although he admits he was initially somewhat inflexible, he now recognizes and welcomes the opportunity to adjust a strategy when it would be advantageous to do so. This awareness is a direct result of his cancer journey and has proven beneficial in both his personal and professional lives.

Joe has been cancer-free since October 2008. He continues to check in with Dr. Scher three times a year and will do so until he reaches the five-year cancer-free mark. The past few years were a trying time, but not without celebratory moments as well, especially including Joe’s children. Oldest son, Joey, got married in 2009 and Joe was able to toast to the newlyweds. In 2010, Tommy got married and Danny graduated from High School.

This year, Kevin graduated from college, and the whole family was able to enjoy the day together. His voice has regained much of its strength, and Joe estimates it’s about 80 percent of what it used to be. Anybody speaking with him would have no problem understanding anything he said, not just the words, but the inflection and the tone as well.

Dealing with cancer has been a challenge unlike any other in Joe’s life, yet it was met with the same determination and fortitude he applies to anything he tackles. He finds himself changed in some ways, yet the essence of who he is remains. He is now better able to understand the need for flexibility when it comes to even the best-laid plans, and he has learned to take himself a little less seriously.

Conversely, Joe is, in the best ways, the same man he always was: a patriot, a beloved and loyal friend, a proud father and a dedicated husband. Having cancer was undeniably a life-altering experience for Joe, but not one that defines him.

— BY ALLISON FUTTERMAN

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Keeper of the Flame http://www.touchedbycancermagazine.com/2012/08/keeper-of-the-flame/ http://www.touchedbycancermagazine.com/2012/08/keeper-of-the-flame/#comments Fri, 03 Aug 2012 12:20:01 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1003 Frank McCann

Frank McCann

We’re talking with Frank McCann—the only director the Jimmy V Celebrity Golf Classic has known in its 19-year history—but there’s another presence in the room, and it is almost palpable.

It’s Jim Valvano himself, the former N.C. State men’s basketball coach, famous locally (and among sports enthusiasts) for leading the Wolfpack to a 1983 national championship title, and famous iconically for leading a valiant battle with a mysterious form of cancer that claimed his life in 1993. Frank was Jim’s neighbor and his valued friend and remains, in many ways, a guardian of his legacy.

When touring the Classic’s executive offices in Cary, it’s hard not to be gobsmacked by the sheer volume of sports memorabilia on display. A life-size standee of basketball announcer Dick Vitale is warmly inscribed to Frank, while autographed prints of Michael Jordan and Arnold Palmer jockey for wall space with jerseys, plaques and sports-related items of all kind.

But more than anything else, the place just oozes Jim Valvano. His presence is felt around every corner, his image showcased on many of the office walls. And beyond that, his spirit permeates the very air of the place. Maybe that’s why Frank often refers to Jim in the present tense.

Prior to his neighbor’s illness, Frank had no experience whatsoever dealing with cancer. Nobody from his circle of family and friends had ever faced the disease. Originally from southeastern Massachusetts, Frank’s accent still contains plenty of New England brine. He retired from a fulfilling 29-year tenure at IBM as a program manager assigned to Big Blue’s communications programming. He worked on communication projects that presaged today’s Internet, enjoying dream assignments in glamorous locales around the globe.

When he retired to the Raleigh area, he certainly never envisioned himself becoming a key part of a major cancer fundraising entity. “That’s the really interesting part of this whole thing,” he says. “How you can go from one phase of your life to another.”

Today he oversees a full-time employee and two part-timers. For the rest of the staffing needs, the tournament brings in four or five interns and then relies on about 500 volunteers.

As for his own involvement with this cause, Frank marvels how he arrived at this point. “Bachelor’s in electrical engineering and a master’s in computer science. What the heck am I doing with this?” he says, chuckling.

In recent years, however, his connection to the cause has become even more personal. He’s had his own brush with cancer, fighting skin cancer that required some 363 stitches, most of them on his face. “We have to educate and make people aware,” he says, mentioning the dangers related to skin cancer and overexposure to solar rays.

NODDING NEIGHBORS

Frank, his wife, Pat, and daughter, Jodi, moved to Cary from New York in 1979. A year later, Jim Valvano also left New York and came to the area, and they all ended up living in the MacGregor Downs community, just around the corner from one another.

For the first 10 years, the two were only “nodding neighbors,” friendly and pleasant but not close. This was due to Jim’s round-the-clock coaching existence. Like all big-time coaches, Coach Valvano’s inner circle primarily revolved around his staff, his players and others from the coaching fraternity. Pat had become friends with Jim’s wife, Pam Valvano, and the two couples occasionally double-dated, but it wasn’t until the early ’90s, after Jim had left NCSU, that a real friendship was forged between the two men.

Although Frank came from a New England culture in which people generally prefer to remain somewhat reserved, Jim was the exuberant Italian New Yorker who never met a stranger. “Jim was a hugger,” says Frank. “That’s not something many New Englanders do, but he taught me to hug.”

Around this time, Jim, Frank and a small group of friends became a tightly knit group, bound mainly by golf. “We started playing golf all over the place,” Frank says with a smile, recounting treks from Myrtle Beach to Las Vegas.

And then it happens.

“Any time you’re in Jim’s company …” Frank begins but then checks himself. “Any time you were in Jim’s company, it was just unbelievable.” This slip in tense happens throughout our conversation; sometimes Frank corrects himself, sometimes he doesn’t. Clearly, Coach is still in the room.

People remember James Thomas Anthony “Jim” Valvano, a larger-than-life character, for several reasons. In addition to his coaching prowess, he is remembered for his mammoth personality—which mixed equal parts humor, energy and enthusiasm. His signature moment occurred in the victorious rush of winning the 1983 NCAA championship, with an overjoyed coach running around the basketball court looking for someone to hug after one of the most improbable wins in sports history, and then embracing virtually anyone he could find—players, staff, fans, spectators, anybody. That scene, which has become an iconic moment in sports, was the full embodiment of Jim’s personality and perfectly captured his positive and powerful spirit.

But Jim was much more than the fast-talking, emotional guy we’ve all seen on TV, and Frank could talk endlessly about the depth of his friend. For starters, Jim was an English major at Rutgers, where he played on the basketball team, and later in life he enjoyed needling his golfing pals by correcting their casual grammatical mistakes. He was also a history enthusiast and a voracious reader, polishing off a novel each week, every week.

And he was full of other surprises, like the incredible admiration he displayed for one of his rivals. “We were watching a Carolina game on television and they were playing this slow style, and I said, ‘God, I don’t like the way Dean Smith coaches,’” says Frank. “And Jim turned and said, ‘Why did you say that?’ And I said, ‘Well, because of the slow way they play, and they win all the time.’ And then, what surprised me most, he said, ‘Dean Smith is the most innovative basketball coach in the history of college basketball.’ And he just went on, ‘Let me tell you, Dean Smith has six to eight plays—you know what they are, he knows what they are, his players know what they are and my players know what they are. But he has so many variations on those plays, he’ll just keep changing it.’

“He had a lot of respect for Dean and for Coach K (Duke’s Mike Krzyzewski).”

On another occasion after a chemo treatment, Coach Valvano’s respect for Smith poured out at a fast-food restaurant, when Jim couldn’t restrain himself and flipped over the paper from the serving tray and illustrated for Frank the Xs and Os in the complex mechanics of how Carolina’s most effective plays worked. “This went on for about an hour,” Frank recalls. “I was just blown away. But Jim was a master at that.

“I traveled with him once to a high school coaches’ clinic, and he just mesmerized the audience. They had this huge blackboard, and he covered every inch of it. I think it was because he was so damned intelligent. He was just a basketball genius.

“Whether you were talking with Jim one on one or listening to him address some type of huge gathering of people, he was always the same guy. Whether you dialed up the public or private man, the same personality held court. You can’t say that a lot about a lot of people.” Then it happens again. “He is—was—the same person.”

 

THE COACH ATTACKS

Now comes the part of the interview where we have to broach the painful stuff—the illness and death that stole Jim Valvano from the world at the woefully young age of 47.

“Before Jim, cancer wasn’t even in my vocabulary,” Frank says. “And the guy was so dynamic and so incredible. I had the opportunity after I left IBM to spend 10 months with him when he was sick, seeing him nearly every day.”

When asked what changes he saw in Jim during his illness, Frank responds by twisting the question and pointing out what did not ever change with his friend. For starters, Jim remained proud of the fact that he never lost his thick head of hair. “It’s not going to touch my hair,” he remembers Jim telling him.

“Mentally he was still extremely tough,” Frank says. When first diagnosed, Jim stopped reading novels and turned his attention to cancer (in the pre-Internet days), reading about it with a single-minded determination. “He became pretty adept in the first six months of his disease. He was pretty savvy about what this whole cancer thing was about. The way he carried himself through the disease, the way he attacked it. He attacked it like a coach.”

At one point, Jim gathered his inner circle and gave them all special assignments. For example, Jim’s daughter Jamie was in charge of studying alternative foods. Frank’s task was to research alternative medicines, which at one point had Jim ingesting shark cartilage.

Jim had a team, and he sure needed one. He was dealing with the worst diagnosis possible—cancer from an unknown origin. Doctors were never sure where the cancer originated, although they believed it emanated from a point 10 times smaller than the head of a pin.

Throughout his life, Jim Valvano, a serious organization junkie, kept copious notes about everything—all of them scribbled on 3-inch by 5-inch index cards. It started young, and when he was 16, he articulated his life goals on one of those cards. Interestingly, one of those goals was to coach a national championship basketball team, a surprisingly mature and focused goal for a youngster who was still fanning the flames of his own potential career as a player.

When cancer struck, Jim returned to his index cards and, in a precursor to the modern “bucket list,” rattled off 10 things he wanted to accomplish during his remaining time. One item involved painting, so he enlisted Pam and Pat, his and Frank’s wives, to acquire painting supplies. However, when they returned with a rudimentary beginner’s painting kit, Jim wasn’t pleased, so he and Frank ventured out and returned with enough supplies to outfit an art academy—including a professional easel, various-sized canvases, a painter’s palette and a rainbow of different-colored paints.

Once properly equipped, Jim launched into finding a subject to capture on canvas and had Frank bring him armloads of books for possible inspiration. “Finally he found one,” Frank recalls. “It was a boat on a shore with a little house, and then in the background another boat back on the horizon. He said, ‘This is going to be called “Brown Boat.” So he proceeds to start from scratch and paint ‘Brown Boat.’

“The story points to the fact of how focused he is … he was … and how goal-oriented he was. On one side is he fighting this disease, he’s researching it and he’s in pain, but he’s also trying to check off each of these life goals. That’s the way he was.”

At one juncture Jim called Frank over, all excited, and asked for his opinion on how his recently painted clouds had turned out. “One thing you can’t do with Jim—couldn’t do with Jim—is you had to tell him the truth,” he says. “Good, bad or indifferent—whatever. Otherwise, he’d see right through it. He wanted to know what the truth was.

“I looked at the clouds … and they weren’t good. They were not good,” he recalls with a laugh. Frank confessed his opinion, and Jim studied the painting for a moment, then shrugged, admitting, “Yeah, that’s what I thought.”

Jim eventually completed his painting, and about a month before he died, held a gallery-type gala to unveil his masterpiece for his friends and family. The unveiling was a black-tie event (“He didn’t care what else you wore, as long as you had on a black tie.”), and he greeted each guest decked out in a painter’s smock and Italian artist’s hat. The painting was kept under cover on its easel until Jim presented it with a flourish to his guests. “He was the master of ceremonies at the unveiling, and it was the funniest thing.” For Frank, a casual videographer who always tried to capture essential family moments on tape, it was an evening to record … and treasure.

When asked if he ever watches the video he shot from that night, Frank pauses, then answers “No,” with a soft sigh. Frank still watches some of Jim’s captured video moments, such as his famed 1993 ESPY Awards speech, but this is one precious memory that’s still a little too painful and personal for casual reviewing.

 

A TOURNAMENT IS BORN

The Jimmy V Celebrity Golf Classic that Frank obsesses over is in its 19th year, has raised more than $15 million for cancer research and is widely recognized as the absolute best example of a charity golf event. Frank was present at the inception of the concept, but understand that before there was a Jimmy V Celebrity Golf Classic, there was The Rossi. And it was a hoot—a hilarious reflection of Jim’s offbeat and funny personality and his take on the game with the small white ball.

“He wasn’t irreverent,” Frank is quick to point out. “He respected the game of golf.” But he also didn’t really care for some of the strict etiquette traditionally associated with the game. “He believed that if one of his players could shoot a free throw with 20,000 people screaming at him, you can putt with him talking.” Frank then mimics Jim on the green when another player trying to putt looks up, annoyed: “What? I’m gonna talk. C’mon!”

“Jim wanted to start a golf tournament that was 180 degrees away from the traditional, sometimes stodgy golf tournament,” says Frank. “And this tournament was the opposite of everything that you could imagine.” The informal tournament, dubbed “The Rossi,” was named in honor of Bob Rosburg, a pro golfer turned announcer whom Jim got to know, and whom he admired for his cool delivery and spot-on analysis. The tournament was held for several years, and soon ESPN announcers and other celebrities wandered in to join the fun. The Rossi had its own laid-back vibe and delighted in deflating some of golf’s sacred rites. The complimentary gift bag, for example (a staple of fancy celebrity tournaments), was contained in a plastic grocery store bag, and held such novelties as a pack of instant coffee, condoms, hundreds of electronic resistors, or whatever else would draw a laugh. Each player was given exactly one golf ball, and all were dressed identically: white shirt, white shorts, white socks and white golf shoes. “We all looked like ice cream salesmen,” Frank chuckles. Quirky rules were put in place all over the spectrum, including a two-stroke penalty for wearing brown shoelaces.

After Jim was diagnosed with cancer, Frank retired from IBM and regularly shuttled Jim to and from his chemo treatments at Duke. The treatments were time-intensive, requiring three or four hours apiece. To pass the hours, Jim and Frank played leisurely games of chess and spitballed various ideas. “We had a lot of time to reflect on what this thing is,” he says. “This thing” turned out to be the core idea behind the V Foundation—which Jim envisioned as a powerful force for cancer research, something that could attack cancer with the same energy and purpose that he displayed while attacking his own illness.

The pair started noodling with the thought of turning their own crazy tournament into the real thing—with a huge possible fundraising payoff that could be applied to cancer research.

“We got into this discussion playing chess how we could raise money for the foundation,” Frank recalls. “Just he and I … kicking it around. And he said, ‘You know, there’s a lot of golf events that make a lot of money.’ But Jim didn’t want this new tournament to aim low.

“Everything he did was huge, so this had to be huge, too. We started talking about it and he said, ‘We need to have a black-tie event, we need to have a pairings party, we need a more serious event that raises awareness for the foundation and considerable amounts of money for cancer research.”

So the V Foundation and the Celebrity Golf Classic began at roughly the same time. At first, though, Frank didn’t move quickly.

Jim passed away in April 1993, and afterward Frank let the matter sit for a few months. But eventually he met with another member of the golfing posse, Terry Pegram. Their casual lunch meeting about the subject ran four hours as the wheels started turning. Then Frank approached Nike Chairman Phil Knight, who had been a big supporter of Jim. Frank’s next stop: Jim Goodnight, CEO of SAS Institute. Frank credits these early meetings with why the tournament exists to this day. “They contributed significant amounts of startup money. So that’s how it got started.”

Those early meetings relied upon the strength of the concept, Frank’s power of persuasion and the tremendous good will Jim had generated—at that time, there were no “pitch” documents or fancy marketing items to try to attract financial support. Basically, it was just a guy telling the remarkable story of his amazing friend. “The concept was so real and so good … and other people recognized that. And they caught the vision,” says Frank.

The first year of the Classic was especially meaningful for Frank, as it represented the culmination of some 14 months of work designing the tournament, developing corporate means of support and organizing the multitude of details inherent with mounting such a massive production.

Frank was and is awed by the support from the community, the people who come forward every year to volunteer. He also treasures the support of many high-profile friends and associates who lent their support to the cause early on. He quickly lists Dick Vitale, along with Duke basketball coach Mike Krzyzewski and NBA Hall-of-Famer Charles Barkley, who supports the tournament every year with his time and money, as some of the key contributors. But despite the proven success of the event—the fun had and money raised—Frank is adamant about one thing: “It’s not a golf tournament,” he says. “It’s a means to make people aware of the V Foundation that Jim started to attack this disease, to do something about it. What Jim and I saw was that it not only affects the person who’s being touched by cancer, but the effects it has on families. It’s just absolutely devastating.

“The Jimmy V Celebrity Golf Classic generated the seed money for jumpstarting the V Foundation, and we were a big part of its initial yearly revenue, but luckily, now, the V Foundation has surpassed the $100 million mark [of money donated to cancer research] and we’re now a very small part of that, which is good. That’s the way we designed it, and that’s how we want it to be.”

As you might expect, Frank’s still very much plugged into the Valvano family. “I was with Pam last night [tasting the prospective menu for the gala], and I’ll be with her in about an hour.” At 11:30 that morning, the pair was going to meet with a potential sponsor. “She’s just fantastic,” he concludes.

Pam remains a member of the tournament’s board of directors. In her own life, she has remarried to local veterinarian Dr. John Strasser, whom Frank calls “a great guy … and also a big supporter of the Classic.” (Last year, for example, Dr. Strasser was instrumental in bringing NBA legend Shaquille O’Neal to the event.)

Having a sit-down tasting of potential menu items in June may sound a little zealous, but the Classic—and all the events surrounding it—is a logistics marathon, and logically its planning is based on the biggest golf tournament of them all, The Masters.

“The Masters has a book that contains every item that needs to be checked to make that tournament a success, and everything has got to be checked against strict timelines,” Frank explains. “So we created a timeline, and we have meetings on every item that needs to be handled.

“Who’s doing what when and where? Everything’s got to be spelled out. These timeline meetings used to last eight, nine hours.”

He lights up talking about those mega-meetings, which would begin early Saturday mornings and run all day. “I love it. I’m not sure the volunteers do, but I love it. It pumps me up. Every time I meet with these volunteers, it’s just incredible,” he says. Running a major event for two decades has taught Frank to roll with the punches and not agonize over exterior events beyond his control, such as a last-second celebrity cancellation or a downturn in the weather. “You take it and you move on,” he explains philosophically.

The “sweet spot”—when he can actually relax and enjoy the tournament himself—occurs during each year at a specific moment—although that time has changed during his history with the Classic. “It used to be at 5 p.m. on Sunday,” he says. “Typically, we have a tradition where all the key volunteers get together. It used to be on the porch, and we just sit there and have a beer together. And we all go ‘Ahhhh … ’”

The night the tournament ends, the crew all join up at a downtown Raleigh bar and relax with each other and some of the celebrities who’ve participated, as well as certain sponsors. And if that weren’t enough, the Tuesday after, Frank throws a sit-down dinner for several hundred volunteers. Admitting that that event also requires considerable logistical planning, he mentions they have a committee that handles that as well.

He says that years ago he learned that volunteers are the key to this event, along with the sponsors. The Classic shows its appreciation during the volunteer dinner, when a $50,000 grant for cancer research is awarded in the name of a key volunteer who has given that special extra effort. Then all the volunteers are saluted in a video that shows their work during all phases leading up to the event. For Frank, it’s a special moment. “It’s the most incredible thing you’ve ever seen,” he says. “Absolutely incredible.”

The Classic has a rich life of its own behind the scenes, and Frank observes how it’s brought various people together through the years. Since its inception, there have been approximately 1,250 meetings related to the Jimmy V Celebrity Golf Classic—and nearly all of them have been attended by Frank McCann. In the early years it was a 24/7 responsibility for him, but lately he has been able to delegate more items to his staff. When asked what he does now with his precious little spare time, he laughs. “I used to play golf,” he says. “Isn’t that ironic? I think I’ve played three times this year.”

A FRIEND’S PLACE

So what’s inspired Frank’s tireless work on behalf of the Classic and the V Foundation? “I think it’s a combination—being inspired by catching the vision and having met and engaged so many incredible people who have also been touched by cancer,” he says. “For me that’s what’s kept it going. It’s just amazing how many people have been touched by this disease.”

He wasn’t looking for a cause to give himself to, but along the way, via one of the great friendships of his life, he found one.

“You know, I left IBM after 29 years and it was great—lived and traveled all over the world—but there comes a time in your life when you say, ‘You know, maybe there’s something else that I’m supposed to do,’” Frank says. “And this is it. There’s no better feeling than working with the volunteers, with Pam, with the sponsors and celebrities who really get why they do it—and everybody’s pulling oars in the same direction.”

In 2012, Jim Valvano was named to the inaugural class of the N.C. State Athletics Hall of Fame. Since his death, the V Foundation has raised $100 million for cancer research, and through his example, countless cancer patients have been inspired to apply their full efforts to beating their disease. The total amount of good this man has achieved after his untimely passing is simply incalculable.

Close friends like Frank work on in his name and memory, continuing to fight the battle the revered coach started. Like others who really knew the man well, Frank shares a precious secret: Jim Valvano may not walk among us anymore—but he’s definitely still alive. Just ask Frank. He’ll tell you.

Golf and entertainment fans have plenty to look forward to in the next Jimmy V Celebrity Golf Classic. For starters, “American Idol” winner and local celebrity Scotty McCreery is slated to play. Also expected: former major leaguer David Justice, ESPN’s Stuart Scott (whose story graced the November/December 2011 issue of Touched by Cancer) and (of course) perennial fan favorite Charles Barkley.

— By Phill Powell

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Pretty Amazing http://www.touchedbycancermagazine.com/2012/08/pretty-amazing/ http://www.touchedbycancermagazine.com/2012/08/pretty-amazing/#comments Fri, 03 Aug 2012 12:06:21 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=1000

Dr. Lisa Tolnitch: Physician, Philanthropist, Pioneer

When you sit down to hear a doctor’s tale—informed there will be stories about how things were in the old days, firsthand accounts of medicine’s progress and insight as to what was involved in developing all the fancy technology that now exists—most would conjure up that image of the small-town gentleman doctor wearing a drape-cut suit and fedora, carrying a walking stick in one hand and a leather doctor’s bag in the other. And of course everyone would simply refer to him as Ol’ Doc.

For this tale, however, you can keep all the reverence and admiration you would expect to have for that stereotypical physician, but you’d have to do a complete 180 on the appearance, as Dr. Lisa Tolnitch, is a youthful, modern woman—one who has practically reached celebrity status as a local pioneer in the battle against breast cancer. The Ol’ Doc described above was actually her great-uncle, but more on that later.

Dr. Tolnitch hung out her own shingle in 1991, so the old days she speaks of, in reality, weren’t actually that long ago. But as she describes them today, parts sound more like she’s talking about the 1890s.

“When I began my practice, I was only the third female surgeon in the state of North Carolina,” she says. “When I was training, if someone came in from a car wreck—for example—and we suspected internal injuries, we would need to do an exploratory laparotomy, which means we made an incision from the sternum to the pubis, and we’d poke around the abdomen looking for problems. Fortunately with improved imaging it’s not that way anymore. We can do an ultrasound, CT scanning or smaller interventions that achieve the same results.

“Breast cancer has made similar progress, in that back then almost everybody had a full mastectomy and lymph node dissection, but now I would say the majority of people have lumpectomies and we do sentinel-node mapping, so only a few lymph nodes are removed. We only had one choice for chemo and one choice for radiation back then; now we have lots of choices for both.”

As a result of the progress against breast cancer during the span of her career, the five-year survival rate increased from slightly less than 80 percent in the ’80s, when Dr. Tolnitch was first joining the fight, to 90 percent today—even 99 percent if it’s caught while still localized. And just as important as survival rates, the fact that there are other, less invasive and less severe options available, along with improved reconstructive measures, has made the breast cancer journey less horrendous than it had been.

With that progress, clearly, comes change, which is actually one of the things that most appeals to Dr. Tolnitch. Doctors never stop learning and are constantly reading up on the latest procedures and traveling to attend lectures and study new techniques. Originally from Kettering, Ohio, Dr. Tolnitch was taught the value of education from a young age, and it was around her junior-high years that she began thinking about a career in medicine. Her father was an engineer and her mother wrote for the prestigious Dayton Daily News. Dr. Tolnitch’s maternal grandfather passed away at a young age, and as such her great-uncle stepped in as a father figure to her mother and a grandfather to her, and is one of the reasons she first became interested in medicine.

“We were very close,” says Dr. Tolnitch. “He was a family doctor for about 60 years. Back then you didn’t specialize; you had a solo practice and did it all. Everybody in town knew him, and they could call him 24 hours a day. And when he saw a patient he knew their entire medical history off the top of his head.”

After high school, Dr. Tolnitch was a pre-med major at the University of Kentucky, received her M.D. from the College of Medicine at the University of Louisville, and in 1988 completed her internship and residency at UNC Chapel Hill. She went out on her own and founded Tolnitch Surgical Associates just three years later.

“I was trained in general surgery, so for the first two years of my career I did it all, but then I decided to focus on breast cancer,” Dr. Tolnitch says. “Specialization wasn’t as common back then as it is now, so I saw an opportunity, but it was also something I had interest in. I thought if I could focus on cancer, particularly cancer for women, and develop an expertise in that area, that would set me apart from the rest of the community.”

And set herself apart she did, helping to progress the way breast cancer is diagnosed, treated and viewed. She even performed the first lumpectomy in the area. Today Tolnitch Surgical Associates has grown to include Drs. Nancy J. Crowley and Gayle Ackerman DiLalla, and in October the practice joined Duke Cancer Institute and Duke’s Division of Surgical Oncology in the Department of Surgery.

“We had the unique opportunity to partner with the top cancer program in the state, and to tap into some of the clinical research and opportunities available for patients,” says Dr. Tolnitch. “Medicine is changing and I don’t know what’s going to happen, but the days of being a solo practitioner at a small place are pretty much gone. I think the downside of that is that some of the close, personal relationships that my great-uncle had disappear a little, but on the other hand he didn’t have all the resources that we now have available to us. Obviously my hope is that this relationship will create more opportunities for cure options with experimental trials for our patients.”

 

Eye Opening

Despite all her credentials and her numerous professional awards and honors, Dr. Tolnitch has probably become more famous for the work she’s done outside the operating rooms, stepping up as an advocate for those in need.

“When I first started in practice, we never talked to anyone about money,” Dr. Tolnitch says. “Twenty years ago, if I had somebody that didn’t have any money, not only did I not charge them, but I could call over to the hospital and make arrangements so the hospital didn’t charge them either. Then over time, the economy was changing and insurance got a lot tighter, so money came to the forefront, and not charging people was no longer an option.

“When you’re in Raleigh, it’s so nice. You see all these beautiful homes, you see people out shopping and having dinner … and you don’t realize how much poverty is out there—especially in the rural parts of the state. You don’t have to travel far outside the Triangle before you find people with nothing; no jobs to be had, entire counties that are unemployed because the textile mills are gone, mothers who are unemployed or who have a part-time job that doesn’t provide much.”

Cancer, we know, knows no socioeconomic bounds, and people are afflicted at the same rate regardless of financial resources. The fortunate ones are employed and covered by insurance. The unfortunate have to make decisions that range from difficult to impossible, sometimes including “Do I get the treatment needed to save my life, or do I buy food for my family?”

“How do you put somebody in that position?” Dr. Tolnitch asks rhetorically. “If you have to choose between feeding your children or getting care. … If you are destitutely poor, you can get Medicaid and defray a lot of your medical costs, and maybe get food stamps, but for a person to try to navigate the whole system is really overwhelming. How do you pay for gas? And what if you have a little bit of something, a part-time job with no insurance, so you’re not eligible for Medicaid? How do you do all that?

“I had two women I could never get through the system, even if I was willing to not charge them myself. The bigger part of the charges was the hospital: the chemotherapy, the radiation. And there was no way to work it out. So one day I was talking to a friend about the way diseases cut people out of insurance, and I just thought, ‘Wouldn’t it be great if we could help 10 women in Wake County get treatment each year?’ And that’s how it started.”

From that thought the Pretty in Pink Foundation was born. Based in Raleigh across from Rex Hospital, the organization’s mission is to provide financial assistance to uninsured and underinsured breast cancer patients so they can receive quality, life-saving medical treatments regardless of their ability to pay. When a champion (PiP’s word for a person battling breast cancer) is accepted into the program, Pretty in Pink’s knowledgeable staff finds out what that person’s specific needs are and then moves heaven and earth to find local resources that can help satisfy those needs. And if all else fails, the champion will be issued a PiP “insurance” card, which makes the organization responsible for paying the tens if not hundreds of thousands of dollars that often get racked up in such treatments.

The organization began mom-and-pop style, out of a garage with used and donated equipment, and has since blossomed to its present state, complete with local full-time employees, Penny Lauricella, the executive director, and Bernadette Pickles, the director of outreach and volunteer services, two of the most dedicated and wonderful people on earth to be sure. (It has also opened regional offices in Charlotte and Wilmington.) Pretty in Pink recently celebrated its eighth anniversary, and what was originally planned to help 10 people a year in Wake County, has served more than 1,200 individuals (including 10 men, who yes, can also get breast cancer) in 70 North Carolina counties. For the first few years the organization was growing at a steady pace, but in 2009 things exploded when the Today Show’s Anne Thompson came down with a camera crew and took PiP’s story national. As you can imagine, the phone lines immediately lit up with people looking for help.

“We weren’t prepared for the endless phone calls that came in—many from out of state,” says Penny. “But what are you going to do, say ‘No’? So we were calling all over the country, and after a full week of crying and praying, that experience really propelled us to really get it in gear, and we flipped this organization overnight. We went from being a good, cutesy little organization to being a full-fledged foundation that was really making an impact in the community.”

“After the Today Show we got a flood of letters from all over the country,” Dr. Tolnitch says. “Penny handed me a stack and each story was more heartbreaking than the next. It was awful. Not only did the person have cancer, but the rest of their life was a disaster and they had nothing. We’ve been asked to go national because there’s so much need, but that would take a tremendous amount of financial support that we just don’t have. We’re trying to help everybody, but you just can’t. We’re hoping that we can get other breast cancer—and just other cancer—organizations on board to pull together and address this, but … ”

 

Moving Forward

Not only has Dr. Tolnitch spent years as an advocate to get patients with financial needs the services they require, but she has also been at the forefront of the recent trend of treating the “whole” patient—as in, addressing the physical, psychological, spiritual and practical needs of each person.

“There’s so much more interaction around breast cancer than there is around other medical issues,” she says. “And there are so many things that impact the patient’s life outside of treatment, so at our practice we are by nature more involved in the lives of the patients. We know how their husbands and children are doing, how work is going, and where other strains of life are coming from.

“There’s so much emotional content surrounding breast cancer—more than other cancers. It impacts so many lives; everyone knows a family member, friend, neighbor or co-worker that’s been affected by it, and that draws people into becoming involved.”

Involvement is one thing breast cancer certainly has, as countless nonprofit organizations have tapped into millions of participants to raise billions of dollars that have gone toward awareness, prevention, research and, as with Pretty in Pink, practical applications, such as paying for treatments and other daily necessities. Each of those elements, Dr. Tolnitch says, has contributed to the overall improvement in survival rates for breast cancer patients and the improved quality of life of survivors.

“It used to be that in order to catch breast cancer, most people presented with a mass—and that had to be 2 cm or larger for somebody to find,” she says. “Screenings have made a huge difference. Improvements in mammography and the emphasis we put on getting them regularly has made a huge difference in helping us catch the abnormalities when they’re small. There’s also been a dramatic evolution in the drugs we use. It used to be that an older person would be diagnosed with an advanced tumor and would have limited options. Now it’s usually a small tumor with lots of options.”

Of course one of those options—the lumpectomy—was pioneered locally by Dr. Tolnitch. And the woman on whom she performed that operation in 1988 is still alive today.

“In medicine things are always changing very rapidly,” Dr. Tolnitch says. “Doctors are always reading—you have to be constantly educating yourself and embracing new things. It wasn’t a popular belief 30 years ago, but I knew that small tumors didn’t involve the whole breast, so not everyone needed the radical mastectomy.

“We know a lot more about cancer now than we did when I first started, and we’re able to sub-segment cancer into smaller and smaller groups, so I think eventually we’ll be able to figure out treatments that are best for each specific type. We’re not quite there yet, but it’s coming, and then the natural evolution of that is then being able to figure out how to prevent the mutation from happening in the first place.

“There’s been lots of progress over the last 20 or so years, and when you think of it like that, it kind of makes you feel old. But it’s exciting. Thank goodness we have so many things we can do to help people—not only with cancer but all diseases. Obviously it’s extremely rewarding. I don’t know of any other profession where you could have that type of feeling, where you’re really impacting someone’s life like that.”

And for the thousands she has touched—both in and out of the treatment rooms—the impact has been momentous.

 

 

 

 

 

 

 

<caption for doctors photo>

From left: Drs. Gayle Ackerman DiLalla, Lisa Tolnitch and Nancy J. Crowle.

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Definitely Maybe http://www.touchedbycancermagazine.com/2012/06/definitely-maybe/ http://www.touchedbycancermagazine.com/2012/06/definitely-maybe/#comments Wed, 13 Jun 2012 14:39:18 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=969

childhood cancer

To say that raising kids denotes 18-plus years of uncertainty is an understatement. Will they grow up to be well-adjusted? Will they bring home friends that I approve of? Will the school system reassign them to a new school for the third time before the fifth grade?

Perhaps the most uncertainty I’ve faced as a parent started the moment the pediatrician felt a lump in my daughter’s abdomen. The lump. A lump of utmost significance.

Maybe she was just constipated. Maybe it was a cyst. Maybe it was that crayon that I was sure she swallowed whole. But out of all the C-words it could have been, it was cancer. That much was certain.

Fast-forward to the hospital. There was something growing on her kidney. It could be neuroblastoma. It could be Wilms tumor. Wilms has a good prognosis, we are told. No one mentions the prognosis for neuroblastoma.

We walk through the looking glass into a world where absolutes are nonexistent.

Scans upon scans upon scans give clues that it probably is Wilms tumor, and she will be treated as though this were the case. After all, you can’t be certain until the tumor comes out and it is sent to pathology.

The typical treatment for Wilms, the cancer with the good prognosis, is to immediately remove the affected kidney and then follow with chemotherapy. She would certainly go into surgery the next day for some life-altering operation.

Until … more scans revealed that the cancer was in both kidneys. This isn’t the Wilms with the good prognosis we were prepared for. This is the 5 percent of kids who have the dubious honor of having a cancer with a fifth stage. And while Wilms patients typically have one tumor in each kidney, my daughter had 13 masses between the two. And we’re not sure if they are all Wilms or some of them are nephrogenic rests (remnants of renal blastema tissue found in or around the kidney) that will one day turn into Wilms, but either way, you can be certain that it’s not the Wilms with the good prognosis we were talking about when we came into the oncology clinic all teary-eyed two days ago.

And in some cosmic joke, we found that there was little else we could be certain of. As in, we have a 9 a.m. MRI appointment. As the clock strikes noon, we wonder aloud what time will she be taken back? “Soon.” Silly me for assuming it would be 9 a.m.; that was a rookie mistake. When will the next round of doctors be in to press on her belly? “Soon.” When will you allow her to eat or drink again? “Soon.” Soon is nurse-speak for “Please stop asking us. We have no idea, but we guess it won’t be soon at all.”

When are you taking this cancer out of my daughter’s major organs?

We waited for what seemed an eternity for doctors around the country to look at her reports and agree on a plan of action. I found this was the hardest time for me, being in this cancer-limbo. There is something deeply unnerving about knowing that your child has something deadly in her body that doubles in size every 10 days and just waiting. Waiting to hear what the next step is. I’m most certainly not great at waiting.

It was decided that she would get six weeks of chemotherapy before surgery. Or 12 weeks. Can’t be sure until we get going and see how she responds to treatment. The hope was to shrink the tumors enough that parts of both kidneys could be saved. If kidneys wore shirts, they would most definitely read, I’m kind of a big deal.

The radiation oncologist came in to visit us. Just in case we had to meet again at a later date. Is my daughter getting radiation? Maybe. Maybe not.

Will her counts be high enough to get chemo this week? Maybe. Maybe not.

Will a delay in treatment be detrimental to her outcome? Probably not. But maybe. Can’t be sure.

Will she get all these side effects on these consent forms I had to sign? Maybe. At least a few.

Will she need a kidney transplant? Too early to tell. A few kids have.

Will I be fishing my daughter’s hair out of our spaghetti? Probably. But some kids don’t lose it.

After the first six rounds of chemo, more scans showed that the tumors responded very well to treatment. This would lead us to believe that the histology would be favorable and surgery was just on the horizon. And we spent three whole days getting excited about finally having the big day where the cancer comes out.

Until it was decided to do it all over again and see if the tumors could be shrunk even further. I should have figured out this pattern by now: that whatever you think will happen most certainly won’t. Except when it does, but only after you think it won’t. Oh, the cancer world is an oscillating fan that you might throw pennies into only to have them fly back at your face at warp speed.

The tumors didn’t really shrink that much more for all of the extra poison we pumped into her tiny 2-year-old body. Stuff so toxic that the nurses administering it have to suit up.

In the end, we got the answers to most of our questions. In the end, they were only able to save part of one kidney. But the good news was that the initial pathology looked great and the tumors appeared necrotic. She would be subjected to a much less intense chemo schedule for the next few months.

Until the final pathology came back with an anaplastic tumor, which is apparently a game changer, because we ended up having to meet the radiation oncologist again. And no offense to that doctor, but I would have been fine if I never saw her again.

Never had to see any of them again.

For a week we went back and forth. The will she/won’t she need radiation scenario put other situations into a more trivial light. Suddenly the matter of whether my kids’ school has an active PTA seemed less and less important. We logged hours of conferencing with the oncologists and tried to make the best decision we could on the information provided. It was all so … uncertain. There wasn’t a case like our daughter’s to which we could compare. Do we really want to risk aiming radiation beams at the small amount of kidney she has left? Do we want to risk letting a rogue cancer cell take over the small amount of kidney she has left?

We went all in. There’s so much pressure as a parent having to make the ultimate decision, especially one we didn’t spend the better part of a decade at medical school learning about. If this was the right decision, we could sleep at night. If not, we had no one to blame but ourselves.

It’s been more than two years since we had to make those decisions. They seemed to be the right ones. My daughter currently shows no evidence of disease.

But the future? What does that hold for her?

I attended a childhood cancer survivorship conference, interested to learn about the late effects my kid may experience. It took me a month before I was ready to look through my notes, because it was quite overwhelming to absorb what may lie ahead. If you were to look at what I wrote down, you would think I was certain that my daughter would experience every late effect based on each bullet point that I UNDERLINED AND CAPITALIZED WITH LOTS OF EXCLAMATION POINTS!!!

I can’t be certain she won’t get a secondary cancer. I don’t know the extent of heart damage that has been done. Hopefully her liver will hold out through college. Bowel obstruction? A gastrointestinal bug will never just be a gastrointestinal bug again. Orthopedic issues from radiation through the spine? Maybe her backbone will curve into a giant question mark. How apropos.

I was happy to attend that conference because it meant my child is a survivor, even if I left feeling that everything I had to sign on those treatment consent forms was going to happen to her.

But maybe they won’t. But maybe they might. But we don’t know, really. It’s not like we had choices on the treatment. Either you treat and try to save your kid, or you don’t. It’s certainly no choice at all.

I really feel sorry for my daughter when it’s her turn to start filling out her medical history, though. Perhaps one of the few certainties our survivors have is a future filled with hand cramps.

— By Christy Griffith

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The Voice of Hope http://www.touchedbycancermagazine.com/2012/06/the-voice-of-hope/ http://www.touchedbycancermagazine.com/2012/06/the-voice-of-hope/#comments Wed, 13 Jun 2012 14:24:46 +0000 Touched By Cancer Magazine http://www.touchedbycancermagazine.com/?p=971

Dr. Marget "Maggie" Deutsch

To say that cancer—and medicine overall—is big business is a gross understatement. The National Institutes of Health estimates the United States will spend around $130 billion on cancer treatments alone this year—a number that is expected to climb to as high as $207 billion by 2020. And that’s just for treatment. That doesn’t account for the billions spent on research, and certainly not the out-of-pocket expenses patients know all too well, such as fuel, parking, food, lodging, personal products (such as wigs or extra toilet paper) and so on. It’s gotten to the point where a successful doctor needs to be equal parts physician, economist, businessperson, social worker and advocate.

Such is the case with Dr. Margaret “Maggie” Deutsch, a hematologist-oncologist with Cancer Centers of North Carolina. Over the course of her career, she’s been awed by the advancements in medicine itself, fascinated by the evolution of the business and frustrated by the way some patients are being left out.

“I’ve seen lots of changes on the landscape of medical care,” she says. “It went from having big groups of doctors to smaller, single-specialty groups, and now those groups are aligning with hospitals or major medical forces. The whole fabric of medicine is interesting, and it’s interesting how the business of medicine is evolving, although it’s pretty distressing that we continue to have a healthcare crisis in this country.”

“These days we see a lot of uninsured, indigent patients—not the kind of people you can turn your back on when they have cancer. A doctor shouldn’t turn [his or her] back on a patient to begin with, but it’s a little different for a primary care physician—for example—to not see an indigent patient as opposed to an oncologist.”

For anyone fortunate enough to engage her in conversation (especially one that’s not about your cancer treatment), it quickly becomes obvious that Dr. Deutsch’s concern for all patients is deep and genuine, and although healthcare is an gargantuan political issue, her politics side squarely with the patient, in that she wants politicians to drop the partisanship and do what’s right for those in need.

“I don’t know if all doctors do this, but I think about medical economics all the time,” Dr. Deutsch continues. “And I’m dismayed at our healthcare situation in this country. I think it’s egregious that the richest country in the world doesn’t provide basic healthcare to everyone. I think it’s a moral issue and it’s wrong. People get bad illnesses that they didn’t ask for, and it’s unfair that they get punished for it, especially when the solutions become entwined in political issues.”

“Oncology is making up a bigger and bigger piece of the healthcare pie. We have great new drugs coming out, but they are phenomenally expensive. There’s a new oral agent for lung cancer, but it’s $9,000 a month. There’s a great new drug for melanoma, but it’s $135,000 for 12 weeks. They’re great drugs, but they’re so expensive. Where’s the point at which we price ourselves out of existence? How are we going to keep the healthcare system humane, where we allow people to get the most up-to-date, best care they can get but yet be sensible about what we do? That’s not just a political question; that’s a question for all of us in the medical industry.”

Dr. Deutsch’s views are stimulating because not only has she been immersed in the medical evolution for two decades, but she points no fingers and assigns no blame, asking instead only what can be done to improve the situation as is exists.

“I tend to think we need to move away from this whole fee-for-service system we have with doctors,” she says. “When you get paid for what you do, you tend to do. And that naturally leads to oversight from insurance companies and Medicaid—which hasn’t been so profound to make [doctors] miserable yet, but we know it’s there. I was treating one patient for a blood disorder—not cancer—and Medicaid said she could have X number of visits, and when she reached that number, Medicaid said, ‘We don’t care what she has, she’s exhausted her visits, and we’re not paying anymore.’ I don’t think that’s a good approach to medical care.

“Maybe it won’t happen until after I finish my career, but something’s got to give. We’re seeing more uninsured people every day. And why is health insurance linked to employment anyway, especially when companies can find loopholes and not offer coverage? All these issues float in my mind constantly that have nothing to do with oncology but everything to do with where medicine is going. I think about things all the time that I can’t change, but I wish I could. I wish I could make things better for people. I’m lucky: I have health insurance. But there are lots of people out there who aren’t lucky. Where medicine is going is exciting, but what’s happening to people is kind of sad and grim.”

 

A Little Badgering

Born in the Midwest, the second of four children, Dr. Deutsch’s family bounced around during her infancy before planting roots in Wisconsin when she was in third grade. After high school, she attended the University of Wisconsin in Madison and competed for two years on the varsity swim team before unexpectedly finding herself in medical school.

“I liked science, and after I graduated from high school I wanted to become a chemical engineer,” she says. “But then I got to differential equations and decided it wasn’t for me. I didn’t like math. So I decided to go to pharmacy school and was going to get a Ph.D. and do research, but at the same time I realized I really liked dealing with people, so in my third year of school I decided to take the MCATs [medical college admissions test], and I figured if I did halfway decent I’d apply to med school and see what happens.

“I got good scores, and Wisconsin had a program for in-state students where if you interviewed for medical school you’d find out if you were accepted within two weeks. So I got an interview at the Medical College of Wisconsin, and two weeks later I was in med school. I never had the intention of going to med school, but sometimes things happen for the right reasons, and medicine seemed to find me. And once I was in medical school, I knew I was in the right place.”

Dr. Deutsch quickly decided she didn’t want to go into internal medicine; instead, she wanted to subspecialize, but she didn’t want to get tied to just one particular organ like the heart or lung or kidney. That’s when she realized hematology-oncology would be a good fit, because it specializes in the entire body.

“Hematology-oncology offers a lot of variety, and you deal with fascinating challenges all the time,” says Dr. Deutsch. “And it’s so people oriented, which is what I was good at. If I hadn’t been a doctor, maybe I would have been a teacher, because I like figuring things out and explaining things and helping people understand what’s going on.”

After graduation she moved to North Carolina to do a fellowship at Duke University Hospital and stayed on staff briefly before moving into private practice.

“It’s hard to do the academic thing and have a clinical practice because you have to write grants and generate funding, and I much preferred taking care of patients,” Dr. Deutsch says. She began with Raleigh Internal Medicine, which eventually broke up, and then she joined  Raleigh Hematology-Oncology part of the American Oncology Resources network, which eventually evolved to US Oncology the current managing partner of Cancer Centers of North Carolina. As the business side of medicine has evolved, fortunately so too has its science.

“It’s gratifying to see in my lifetime how prognosis and treatment and survival for cancer patients has improved,” Dr. Deutsch says. “And also the tolerability of treatment is better. When I first started out it was just about giving people chemicals—and often that made them feel not so good. Now we have better drugs and better supportive medicines for side effects. We’re getting into personalized medicine, where we can look at characteristics of the disease and personalize the treatment. It’s been incremental, but if you look at where we are now compared to just 20 years ago, not only improving survival rates but also improving tolerability and quality of life, the improvement is huge.

“Ten years ago if we had an 85-year-old patient with advanced cancer, treatments might have been worse than the disease. Today we can protect that patient and improve [his or her] quality of life and sometimes even cure them. Even somebody who doesn’t have a curative illness, we can at least improve their lives and help them meet the goals they want to meet in the time they have left. And that’s important to patients and to their families.

“As an oncologist, you’re not just treating the patient; you’re treating the family as well. I always think of it as involving everyone—the patient, the caregivers. Caregivers have a lot of issues to deal with. They have a lot of questions. They often have to make what-if decisions.”

Dr. Deutsch’s concern for the whole patient, including the people around him or her who provide the emotional support, comes naturally, and she suspects at least part of her empathy comes from the loss of her father, who died of lung cancer during her first year of medical school. She is open with her patients about her own personal experiences, and hopes that candor helps create a connection that allows the patient and caregivers to feel better, so they don’t have a common, “sterile” relationship.

 

Hitting Home

Dr. Deutsch and Edward, her husband of nearly 10 years, live in Chapel Hill, and have a family blended with four children ranging from ages 18 to 25. Ironically, Edward wanted to be a doctor and is now a chemical engineer, the reverse of how Dr. Deutsch’s educational plans turned out.

Recently Dr. Deutsch agreed to participate as a candidate in the Leukemia & Lymphoma Society’s biggest fundraiser, the Man & Woman of the Year Award. Candidates from around the country compete locally to raise money over a 10-week period through various creative endeavors for the LLS. This cause is of particular importance to her, because Dr. Deutsch’s 9-year-old niece, Frankie, is a leukemia survivor.

“I was driving home one night and my sister-in-law called and said Frankie, who was 2 at the time, broke her leg from jumping up and down in her crib, and they were worried because when they took her to the hospital they said her blood counts were low and they needed to admit her,” Dr. Deutsch recalls. “That’s really weird when a kid comes in like that to begin with, and my sister-in-law kept asking what was wrong, and I said, ‘I think you’re going to find out she has leukemia.’ And I calmly explained that the pediatric oncologist would come in the next day and test the bone marrow and find out exactly what she has and what they needed to do.

“Sometimes you have this fear, and what makes you so anxious is the fear of what it could be. Sometimes if you just say it out loud you can at least get your arms around it and start dealing with it. So I explained the process, because sometimes if you know the next steps, you feel like you have a little control. And sure enough, the most wonderful pediatric oncologist came to see them, did the tests, and found she had acute lymphoblastic leukemia—but she had very good prognostic features and did great. She had three years of treatment and has been doing great since.

“My brother and sister-in-law were helped so much by  LLS during Frankie’s illness and they have been giving back ever since. Frankie was a Girl of the Year in Wisconsin in 2010, so that set the stage for my involvement.”

An avid tennis player, Dr. Deutsch raises funds by getting sponsorship for each minute of tennis she plays during the campaign—no small feat as she’s aiming for 6,000 minutes. Another source of revenue for the campaign comes from donations from current CCNC patients. Dr. Deutsch has sent up displays in each of CCNC’s five locations, explaining the fundraiser and personalizing it with photos of Frankie and excerpts of her sister-in-law’s blog from their CaringBridge site (parts of which appear on this page).

“My sister-in-law’s journal. To read that, even now, just makes me cry. It’s just so … ” Dr. Deutsch says, pausing with a headshake. “It’s a life-altering experience. It changes the way you think about things. Silly things just don’t seem as important anymore. You never think it’s going to happen in your family, but this was an eye-opener. I don’t think there are many people around who haven’t had somebody in their life touched by leukemia or myeloma; it’s just really common. I’m not normally one to go out and get people to donate money, but I think this is the right cause, and people have been very gracious and generous.”

Choosing to have a “tennis Calcutta” as her major fundraiser was a simple decision, as tennis in general is a big part of her and her husband’s lives.

“I enjoy tennis because it lets me relax, and has provided me with my friends and social network,” Dr. Deutsch says. “I like what I do [for a profession] here. But so many oncologists get burnt out because they don’t understand how vitally important it is to have balance in life; to spend time with family, to make time for yourself and to do the things you enjoy doing. Without that balance you can’t be what you need to be for your patients.

“If you’re not happy doing what you’re doing, you can’t do it well. And I’m happy with what I’m doing. It’s very gratifying to help others through such a difficult time.”

 

 

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Excerpts From Frankie’s CaringBridge Site

From Deanna, Tony and Frankie the Pea

 

May 27, 2005

Do you want to know the four best words I have ever heard in my whole life? Better than “Will you marry me?” Better than “It is a girl.” FRANKIE IS IN REMISSION

Those are the sweetest words I have ever heard, and Tony and I heard them today. I busted into tears, of course, and haven’t stopped crying yet. Every time I think about her being in remission my eyes fill up with tears of joy. It means they tested her bone marrow and found no leukemia cells, it means she is responding well to the treatment, it means she can get off the steroids, it means we can move forward with treatment, it means she is still considered low-risk and it means that not all Mommy’s worst fears are realized!!!

 

June 4, 2005

Well, I thought clinic was going to be uneventful. Was I wrong! It was eventful in a wonderful way!!

Frankie decided it was time to give walking—holding my hands—a try! She has not done that in two months! Sorry for the overuse of exclamation points, but I am so excited!!!!!!!

It probably sounds kind of crazy, my over 2-year-old walking holding my hand, but she has not done this in soooo long. What a fantastic experience. We immediately called Daddy to tell him the good news. Then, we decided to go out to lunch and called Grammy to invite her. I told Frankie that when we saw Grammy at the restaurant, she could walk from the car to her and Grammy would be so excited she might cry. Grammy did not let us down!

Nov. 23, 2005

I have thought and thought about what to write for Thanksgiving. I wanted to write a heartfelt, uplifting message of thanks. I know that is the message I want to give to Frankie, and she is who this journal is for and about.

It’s tough though, being thankful the year your daughter is diagnosed with leukemia. I am not thankful that Frankie has cancer. Yes, we have learned valuable lessons—like how much good is in the world … how to appreciate every day you have with the people you love. But I’d rather not have learned any of them and have my kids totally healthy. I hate cancer, hate what it takes from us, and hate that I will never, never stop worrying about Frankie.

However, those are the cards we were dealt, and I thank God for being with us through this ordeal. I know he did not give her cancer, but he has certainly carried us during the battle against it. I am thankful for all the friends and family that rallied around us during the horrible month following diagnosis. I am thankful that so many people still care, still pray, still read the journal and still rally around us.

 

Jan. 13, 2007

There are some days when cancer just smacks you down—sort of to remind you that it is still here, no matter how “normal” you ALMOST feel. Then, there are days like yesterday, when your bold, brave, beautiful daughter gives cancer the BIG SMACKDOWN and reminds IT that it is in fact SHE who will win. HA, take THAT stupid cancer!

When one of your “chosen” is able to skip, hop and run down the skywalk to clinic singing Sound of Music songs at the top of her lungs, take it as a sign, stupid cancer, that you aren’t welcome in this little fighting body anymore.

 

Oct. 24, 2007

And now, for our top story …
Frances Cynthia Deutsch—a.k.a. Frankie the Pea—is cancer free, after a bone marrow aspiration and spinal tap performed at Children’s Hospital this morning. Her nurse practitioner, Deb, reports that both the bone marrow and spinal fluid are clean and normal.

Wish we could say the same about the child—she is rarely clean, and most certainly not “normal.” Bizarre some days, silly others, downright weird occasionally, and today EXTRAORDINARY.

She handled her day as she has handled her treatment—like a champ.

— by Mike Macdonald

 

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