Coping with Cancer: Turning a Dire Situation into a Life Journey

By Erica Behler

Dedicated to Linda Groscurth & In memory of Gerry Godshalk

As a young girl I paraded around my living room floor festooned in glorious costumes. They had it all; sparkle, pizzazz, sequins, tassels, you name it. I was queen of dress-up. I squeezed myself into them until they were literally stretching at the seams, and to this day they’re still in my possession. These costumes held such importance to me, they were my treasures and they were given to me by one of my biggest heroes, Linda Groscurth. She has been battling Lymphoma for the past 15 years. From her experience, she has learned to look at life in a positive light. She is truly an inspiration and every one of us could learn from her powerful and moving journey.

Whoever has thought they've been through a rough situation before, I'd like you to read this story, and then reconsider. Linda Groscurth, age 55, of Evergreen Colorado, was diagnosed with Non Hodgkin Lymphoma when she was 40, and has been living with it, on and off, ever since. “When I was first diagnosed I wasn’t positive at all. I was told that I had an incurable cancer and the median survival rate was five years. I didn’t know anyone that had been diagnosed with follicular non Hodgkin’s lymphoma and I was sure that I would die within a few years. I went through all the stages of grief; anger, denial and finally acceptance. I started researching and learning about lymphoma and talking to many oncologists.

Unfortunately there isn’t a set protocol for treatment and every doctor that I met with suggested that I try something different. I looked for a lymphoma support group and there wasn’t one at the time, so I joined a breast cancer group to learn how people coped with their cancer diagnosis. I found strong, resilient and positive women, and they helped me realize that any thoughts of “why me?” should be turned to “why not me?” It was a powerful moment and changed my thinking and my attitude.”

Lymphoma is a type of cancer which involves the cells of the immune system, also known as lymphocytes. Lymphocytes are a type of white blood cell that attack a number of infectious agents throughout the body; they primarily play a role in the lymphatic system.

The lymphatic system is a network of vessels which carries a fluid (lymph) to the rest of the body. Within your body your have thousands of lymph nodes. The fluid lymph, flows through these thousands of lymph nodes as well as other areas of the body including; spleen, tonsils, bone marrow and thymus gland. When lymph is filtered through your lymph nodes, they filter out all of the bad stuff- bacteria, viruses, etc... When an infection occurs, these bacteria and viruses build up at the lymph node, and become swollen and tender. This is why at the doctor’s office, when you go in for a cold, they feel under your jaw line to see if those particular lymph nodes are swollen; they're really checking for a localized infection.

There are two main types of Lymphocytes, they are, B Lymphocytes and T Lymphocytes, also known simply as B and T cells. B and T cells are responsible for killing infections and abnormal cells. B cells create antibodies, you can think of them as warriors, that kill off these abnormal cells. T cells don't need to produce antibodies, they can kill directly. After fighting off these abnormal cells or infections, the B and T cells can keep it as a memory, and they'll remember the abnormal cells and know how to fight them if they decide to return. Lymphoma occurs when either B or T cells transform and multiply at a rapid pace, often uncontrollably. Linda has specifically, Follicular Non Hodgkin’s Lymphoma which means that her B cells are affected.

These newly transformed cells begin to collect in one or more of your lymph nodes or in other lymphatic tissue. As the transformed cells continue to multiply at an alarming rate within the lymph node they begin to build up and create a large mass, also known as a tumor. When a tumor is present it can begin to crowd surrounding organs, cutting of their oxygen supply or affecting them as well. Because the lymphatic system runs throughout your entire body, it gives the abnormal transformed cells an easy ride, basically to anywhere it wants to go in your body.

“I finished chemotherapy and radiation in December of 1995. I was incredibly fortunate to stay in remission until September of 2006. When I relapsed I was at stage 4, with the lymphoma widespread across my lymphatic system and in my bone marrow. Because I was still feeling fine, my oncologist and I decided that I would “watch and live”, until we both felt that I needed to start chemotherapy again. I have a cat scan every three months and I’ve remained fairly stable until recently when the cancer has started to become more aggressive. I probably will have to start chemotherapy again in the next few months, but I’m not too worried about it. They have many new treatment options since I was first diagnosed and some of the new treatments are not nearly as toxic and really target the cancer cells, rather than all fast growing cells. I think I can take treatment and have another remission. My goal is to stay alive long enough until they can find a cure for follicular lymphoma and I think I can do it.”

An estimate given by the American Cancer Association said that last year, in 2009, there were 65,980 new cases of Non Hodgkin Lymphoma (NHL) in the United States alone. In that same year there were an estimated 19,500 deaths from NHL in the United States. Cancer is a continual process, and Resource Centers have grown to help those with the disease, cope with their situations, before, during, and post cancer.

Shawn Galbreath, Executive Director at the Finger Lakes Cancer Resource Center, describes the process in which they provide help, “There are stages of coping. First you cope with the shock of diagnosis, then your families shock, then the treatment and its effects on you (maybe loss of hair, loss of body parts, loss of self esteem, fear, the bright light, medicinal, sterile hospitals, needles, etc...).” She goes on to talk about everyone's perception of normal and how if you've undergone this process you'll never quite fit that mold again. “The shock of finishing treatment, it's all you've thought about for weeks and months, and then bang... nothing, and everyone wants you back to normal, which will never happen again.” The Finger Lakes Cancer Resource Center stresses the importance of one on one personalized support.

“No one size fits all or 800 numbers to some far off place that knows nothing about local services.” adds Shawn Galbreath. They also provide post cancer wellness classes for recovery; yoga, walking, nutrition, massage, and swimming are some of the options included.

The Finger Lakes Cancer Resource Center also provides mentors, someone to help guide you through your situation. Lindy has a firsthand experience with this as she is a mentor herself. “One of my passions in life is to help other newly diagnosed lymphoma patients, so that they don’t have to experience the terror that I did when first diagnosed. Statistics are statistics, but they don’t take into account the individual. They don’t take into account a positive attitude, a will to live, the support of family, friends and community, faith and even miracles. When I speak with someone just diagnosed with lymphoma and tell them that there is life after this diagnosis and possibly a great life, it offers them hope. Hope makes the treatment bearable and hope makes life richer.”

When Linda first found out she had Lymphoma, she decided she better find out as much as possible about the disease, “After much research I finally picked an oncologist and decided what chemotherapy and radiation regimen I felt was right for me. Once I began treatment, I felt strong and positive because I had an action plan. I was relatively young and physically strong, so the treatment felt doable for me. It wasn’t easy, but I knew that I could do it and I kept looking to the end and to a remission of my cancer. I was able to become positive because of my conviction that I made the right treatment decision and because I realized not only how much I was loved by my family and friends, but how much I valued myself. I truly thought that I could use my experiences to help others and this thought gave me a strength that I didn’t know that I possessed.”

Since we all face what we believe to be hard situations, I asked Linda what advice she would give to someone going through a rough time in their life, she replied, “My first advice would be to step back and breathe. Typically the first response to any challenging situation is to think you must take immediate action and that easily leads to panic. As difficult as it is, if you can stop and literally breathe for a bit, the panic subsides and thinking becomes clearer. My second advice is to become your own advocate. It is easy to listen to others that want to give you advice or to doctors that tell you what you should do and not consider your own thoughts or ideas. It is important to listen to everyone, but it is vital to consider your own values, your own feelings and your own intuition. We need to empower ourselves to fully participate in our own lives, whether it is a medical crisis or any challenging situation in life. Don’t immediately assume that the status quo has to be the status quo. Often there are other options that present themselves, if we take the time to slow down, breathe and reflect.”

As with any serious situation, you take away many life lessons from it. Lindy is no exception. “I have learned so many things. I’ve learned that none of us know what is in store for us, and that life is truly precious and valuable, so we need to appreciate it and savor the good moments. I’ve learned that the love of friends, family and even total strangers is given freely and should be received with an open heart. I’ve learned that helping others really is more satisfying than helping yourself. I’ve learned that most of us have strength we didn’t even think we could possess. I’ve learned that it’s okay to be sad for yourself sometimes, as long as you can put it in perspective against larger suffering.”

Linda is a true and definite idol; she has overcome obstacles that would be certain to crush some of us. She gives honest advice and realizes that there is a time and place for everything. From that little girl dressed in a dazzling ensemble in her living room to today as a sophomore in college, Linda’s position, as hero has remained undaunted. She remains one of my biggest inspirations in life and the thought of her reminds me to pursue all that I can and to be the absolute best that I can. Let her be an inspiration to you as well.

“Some people say that a cancer diagnosis was a blessing in their life and they wouldn’t change a thing. Well, I don’t think it was a blessing and I would rather not have it. But, since I do, and this is my only life, I’d better make the best of it. I’ve met wonderful people that I never would have met without having cancer. I’ve seen incredible compassion and love for others. I’ve given it, and I’ve received much more.”