Letters to the Editor

Heal, Summer 2008, Volume 2, Issue 2

Letters from readers

It’s time to start talking about the aftercare treatment as much as the actual cancer treatment options.

Finally, an article on the debilitating side effects many colorectal cancer survivors experience every day (“Gastronomical Distress,” Spring 2008). It has been shocking to me that for almost 10 years, I too have been searching for answers to my digestive problems, while physicians seem baffled. There needs to be much more information given to patients about the need to see a nutritionist who specializes in digestive health for colorectal cancer patients.

According to the American Cancer Society, there will be approximately 155,000 cases of colon and rectal cancer diagnosed this year. It’s time to start talking about the aftercare treatment as much as the actual cancer treatment options.

Leah Harrison Stich | Minneapolis, Minnesota

Thanks to Susan Leigh, RN, for a great article on the “kingdom of advocacy” (“Stepping Into the Fray,” Winter 2007). As she states, many of us in our search for our “new normal” find we need to “give back.” It can be difficult for our family and friends to understand that we want to remain in the cancer arena. My own doctor thought I needed to get as far away from cancer as I could and “get on with life.” For me, “getting on with life” included using my patient experience and my medical background in advocacy work.

I am fortunate that, as I finished work on my bachelor’s degree in nursing, I learned of a newly formed organization dedicated to my specific, atypical form of breast cancer, inflammatory breast cancer. Since 1999 I have been involved with this small, grassroots organization. Since 2003 I have served as the executive director and have expanded my role beyond just our organization into involvement in the broader cancer community.

Leigh makes an important point when she says, “Good advocates must be able to look beyond their own personal experiences and understand the complexities of the cancer experience.” I couldn’t agree more. While there are still times when it is important to tell “my story,” more often I am representing a community of patients/survivors and trying to serve as a voice and face for this deadly form of breast cancer.

Thanks again for a great introduction for those considering ways to use their cancer experience to benefit others. Cancer often releases a strong and powerful voice and passion in even the most introverted, as Ms. Leigh’s article shows. I’m also living proof of that experience!

Ginny Mason RN, BSN | Inflammatory Breast Cancer Research Foundation | Citronelle, Alabama

Thank you so much for the Spring issue of Heal. I was very happy to read the Voices column (asking readers to share how they cope with concerns their cancer will recur or worsen). I have been in remission for one year from non-Hodgkin’s lymphoma. It is comforting to read how people cope with the “maybe” recurrence of cancer. I especially liked the submission by Wendy Harpham, MD (who has had multiple recurrences).

Beverly Kubler | South Setauket, New York

Editor’s Note: See “On a Roll” for an expanded piece by Harpham on her journey through her many bouts with non-Hodgkin’s lymphoma.

What a wonderful giggle — your LOL page with the “Diagnosis: Critical (Closet) Mass” (Spring 2008) was hysterical. Kept me grinning the rest of the day. In fact, the whole issue was a winner.

Keep us pumped.

Lori Higgins | Carrollton, Texas

I never write letters to magazines, but I read yours at my doctor’s office and I have to say, I never thought I’d find something funny in a cancer magazine. “Diagnosis: Critical Mass” could have been written about me; it was too much fun, and I can’t wait to read the next story by “Fran, PhD.”

Lorene Anderson | Walnut Creek, California

The last issue with Fran Di Giacomo on the LOL page was a real hoot. I’m afraid my husband will read it and call the “doc.”

Gimme more!

Evelyn Hamby | Dallas, Texas

Finally! Real humor without the need for crude vulgarities, Fran Di Giacomo’s “closet mass” was a rib-tickler that we can all relate to.

Thanks for the fun.

Jeremy Whitelaw | Richardson, Texas

On my vacation I read your new Heal.

My medical bills are killing me, like your article (“Shouldering Debt,” Spring 2008) described.

But the laughs I got from the LOL, “Critical Closet Mass,” made me remember to laugh.

Jocelyn Davis | Clarksville, Texas

It could be that my sense of humor just happens to coincide with that of the writer (Fran Di Giacomo), but I found it hilarious. It is so encouraging to all of us when someone who has obviously been on chemo can still make us laugh. Laughter truly is the best medicine — at least it made me feel better.

Gene Gregory | Duncanville, Texas

Let me begin by saying Kathy LaTour’s article (“Here We Go Again,” Spring 2008, about the discovery of her second breast cancer after a long-overdue mammogram) was great. I am an almost five-year breast cancer survivor who goes for mammograms yearly and one time bi-annually (my imaging center changed to digital mammograms and everyone needed a new baseline). What I don’t understand about Kathy’s situation is why didn’t one of her care providers remind her to get a mammogram? Every time I see my oncologist, internist, gynecologist, breast surgeon and radiologist for my checkups, they all ask me, “When was your last mammogram?” My imaging center also sends reminders. I can’t imagine why Kathy skipped this so very important annual checkup. Thankfully, she’s OK now.

Susan Ockene | Mount Vernon, New York

LaTour’s response: I was in the midst of switching gynecologists; the new one did remind me at my first visit in early 2006, and then another medical issue took over my time. It was a good reminder to me that, as a survivor, I need to be on top of my own checkups!

I have been in pain for two years following bilateral mastectomies and have tried many things to gain relief: massages, acupuncture, physical therapies, an antidepressant and many visits to unenlightened doctors are some. It was not until this very week that a doctor who is a pain management specialist diagnosed my condition. It was also this week that my best friend, who has metastatic breast cancer, read the letter in Heal (Spring 2008) from another suffering woman in your magazine. Just as she has felt alone and doubting of herself and her own perceptions of pain, so have I.

I understand that a previous edition of Heal may have contained an article on post-mastectomy pain syndrome (“Help for Where It Hurts,” Fall 2007, covered a variety of chronic pain issues). My husband has had prostate cancer, almost five years ago, and we could both benefit from your most helpful and sustaining articles.

Thank you for your help in a myriad of ways. I, too, no longer think that I am imagining this constant pain because I now know that others suffer. Thanks to you and doctors like the one I have just seen, we can all help each other.

Margie Dale | Nashville, Tennessee

I must respond to two letters in the Spring 2008 issue — first, to the woman who questioned why you would include an article on Lisa’s Story (“The Not-So-Funny Pages,” Winter 2007, about the Funky Winkerbean comic strip character Lisa and her battle with terminal cancer). The woman wrote, “What purpose does it serve other than to evoke fear” Lisa’s Story allowed cancer patients to relate to one another. Part of our story is the possibility of death. To cover that up and pretend it is not there is not healing. We need friends who will allow us to have the feelings and issues we have.

As for the woman living with metastatic breast cancer who said such patients are neither cured nor healed, I say you may not be cured, but you can be healed. I have follicular lymphoma, an incurable disease, although that my change in the near future. I have had targeted therapy. I may not be cured, but I have been healed.

To deal with your cancer, I recommend you find a cancer support center and take advantage of its programs, join a support group for cancer patients, go on a retreat for cancer patients, read all you can about your kind of cancer. Also, choose to live — take a class, volunteer, go out and enjoy nature, participate in a musical group. If you can’t get out, you can read, pray or meditate, engage in a craft activity, play games with your family. There are any number of things you can do to facilitate your healing. You can be healed. The choice is yours.

Judy Schlegel | Durham, North Carolina

Debu Tripathy’s editorial about the concepts of “cure” and “heal” (“Defining Perceptions,” Spring 2008) resonated deeply with me. For eight years I have watched and waited as my chronic lymphocytic leukemia progresses. Early on I became an oncology massage therapist and I spend my days bringing relaxation and peace to others whose cancer journey is more arduous than mine. (One client describes it as a “vacation from cancer.”)

My clients have taught me that “cure” and “heal” are independent notions. Dr. Tripathy defines “cure” as a medical concept — to cure is to minimize or eliminate the likelihood of recurrence through appropriate medical treatment. I would define “heal” as an existential concept — to heal is to bring together your physical, emotional, intellectual, social and spiritual selves into a peaceful, loving and accepting whole.

Religion, psychology and philosophy all teach that the process of healing is simple, but it is not easy. For those of us struggling with cancer, it is both liberating and energizing to know that we can heal ourselves and that we can be healed without being cured.

Bruce Hopkins, LMT | Portland, Maine