Beating Back Cancer: Support Groups

Showing posts with label Support Groups. Show all posts

Wednesday, June 16, 2010

Cancer Cheerleaders at Work

Years ago, a keynote speaker, retooling a presentation geared to industrial market, adapted his opening day message to our school district: to survive in the business sector ~ and education is big business ~ you need to develop cheerleaders. Compelling and true, enduring in a profession requires a support system, solid friends, respect of peers, collegiality, and much more--cheerleaders. I remember thinking the novelty of the message was so simple that I almost overlooked it. Almost.

What seems like another lifetime since that presentation, the message lingers. Having friends is not always synonymous with having cheerleaders. Real cheerleaders go the extra distance, keeping your spirits buoyant beyond the limits of some friendships. Cheerleaders are friends, family, and people that take support to the next level, and when you can find cheerleaders in your workplace, you just won the lottery. Finding cancer cheerleaders who can motivate, encourage, and "bring it on" for you, providing a stable base and taking you to new heights is another thing.

I am blessed with having several amazing and compelling cheerleaders in my building, and they make a difference in my day ~ every day. The first is my principal, Heather Morningstar. Without her compassionate caring, this year could have been an emotional nightmare, a roller coaster of fear and dread with the revolving door through which I came and went because of surgeries, procedures, tests, and specialists' visits.

Heather always made it clear she knew I had to do what was best for me and gave unfaltering encouragement. Always I agonized about what was best for my students, but Heather gave me support without limits, and she gained my undying respect and admiration. If you are dealing with life-and-death issues, if you are calling in all your emotional strength and coping skills and using them to the max, then having Heather on your side is absolutely the best place to be. Having been on the opposite side years ago only makes me value Heather's understanding even more. A great leader always sets and controls the climate of a building, and Heather's support is permanent and pervasive. I cannot thank her enough for helping me through a challenging time with her continued support.

After I spoke with Heather, the first person to whom I turned was a breast cancer survivor, Jennifer Piagesi. We have been friends and colleagues for years, learn and teach in the same small department, and share planning time for the new courses we piloted this year. She keeps me connected, reminds me to take deep breaths, and with her, I never am allowed to take myself too seriously. A good thing indeed, and a daily dose, much needed. Every day Jen offered encouragement, words of wisdom, prayers, and her life stories about how she beat back cancer. When I needed someone just to listen, or needed a one-to-one or virtual hug, she's been there for me. She also did something so special that remembering it still brings blurry eyes. She called her close friend, a religious nun, and began a prayer chain for me.

As if that were not enough, she surprised me one day with a bottle of water from the Lourdes spring that she collected with her own hands. It was her last bottle of healing water, a small miracle grown large. I began to apply a dot of water each day to what I thought was the seat of my disease, and when my diagnosis came, it was a life sentence, not a death watch. If anyone doubts the power of prayer or the Miracle of Lourdes, think again. I'm still here.

My close friend and colleague, with whom I team taught a special multimedia interdisciplinary IP Project for 13 years, is my anchor. Jennifer Brinson

is my sounding board, my common sense when I run amuck. We have a mother-daughter relationship that works for both of us since her mother and my daughter live a plane flight away. Jen grounds my life, keeping my feet on terra firma. She sends me cancer videos, like the TED Talks, and adds cancer articles to my Beating Back Cancer Diigo feed.

And she loves my llamas. Last summer, when I was seriously ill and before I learned to let go of some fields-always-clean quirks, Jen came to the farm and worked the pastures, about 4 acres, because I was too ill to do this for myself. She knows how I obsess about clean pastures, so in the dead heat of the day, she sweated bullets and cleaned the fields. That's what cheerleaders do.

My next workplace support person, part of my PLCN, Professional Learning Cancer Network, was unexpected, proving that you really never know the impact you make when you speak. I was coming out of the cancer closet and speaking to our faculty. They knew something was wrong; I was out of school too frequently to be sans illness of some sort. As I spoke, I choked, but regained composure to inform my family of 41 years that I had a disease.

I remember saying that I was so lucky, because my disease, although not curable, was slow growing and would not kill me. I would live and die with my disease. I mentioned the more rapid growing form of Non-Hodgkins Follicular Lymphoma that was curable but could kill by the time it was detected. Long story to get to the point. I did not know that in my audience, Mru Govande's mother had just died of the rapid form of NHL. She and I met in a random walk through the hall during a prep period and spoke. She told me her mother's story. We cried together, which for me was cleansing, because I almost cannot cry. And now I have another cheerleader, someone who understands all too painfully how lucky I have been, and she supports me. We share stories, and this summer, I am taking her Cooking from India summer course at her home. Although we were never very close, cancer brought us together, and now we are cheerleaders for each other.

My next cancer cheerleader also arose from an unexpected place, the mother of one of my students. She was diagnosed with leukemia a few years ago, and volunteers actively in the local Lymphoma and Leukemia Society. It was from her that I received a wealth of resources and an invitation to walk with her team, the L&L Happiness Club, for the Light the Night Walk on Saturday, October 16, 2010, at Northampton College. She also invited me today to a Lymphoma and Leukemia Society dinner and presentation from 6-8 PM by Dr. Tlemcani called "NHL: Understanding Your Disease and Treatment Options". The program's target audience is patients, family members and friends. It will discuss information about making an accurate diagnosis, NHL treatment options, emerging treatments, and the role of clinical trials. A patient panel will also discuss coping with the different types of NHL. Were it not for her, I would not be moving forward so quickly with finding local resources. Having her daughter in class was another daily joy, a silent support that really helped.

Last but not least, my final in-house cheerleader is anonymous but synonymous with compassionate caring because she has

Sechel

(SEH-khel) n. Good sense; common sense; reasonable; judgment; tact; diplomacy; good understanding (she's got ~!) (known for his ~). Also spelled saychel, seychel, etc.

Sechel really means, according to rabbis, a loving heart, and she has one of the biggest. She also has something special that is hard to translate, but it has to do with a sixth sense, one of timing. She knows, perhaps feels, needs we have and then springs into action. After my second throat surgery, I had trouble eating. She sent me a big box of designer breads and preserves (to die for, that box) and I had sustenance. What made her gift so special, apart from its coming from her, was the timing. She knew I needed a lift, a cheer-me-up if you will, because I had been through a lot, and the uncertainty of my situation was eroding my inner strength. A box of bread was more than it seemed, but she knew that, and sprang into action. I owe her much, and truth be told, she is the one person whom I would most like to be, when I grow up.

What I have learned in my wellness trek to beating back cancer is profoundly simple. Cheerleaders emerge from diverse sources, but the workplace is a great beginning, since so much of our lives are spent outside the home. I am grateful for the people, both in and outside of my profession who continue to help me on my journey.

Cancer
NHL
Leukemia & Lymphoma Society
Heather Morningstar
Jennifer Piagesi
Jennifer Brinson

Sunday, June 6, 2010

From Cancer Previvor to Cancer Survivor: What's In Between?

In a wellness watch, The Energy Times May 2010 dedicated a special issue to cancer. Its theme, taking responsibility, applied not only to in-the-news-topics like health care reform, but more specifically to the individual's need to take charge and care for one's life. In perusing its cancer resources by organization, I found one that added a new vocabulary word, concept, and an answer to a question mulling around in my mind ~ previvor.

According to FORCE, Facing Our Risk of Cancer Empowered, a proactive and must-visit website, you can beat back cancer despite a predisposition toward acquiring it.

"Cancer previvors" are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, "I need a label!" As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

While FORCE focuses on breast and ovarian cancers, the term previvor is useful in approaching wellness. I learned that my father's cancer increased my chances of becoming a cancer patient by 50%; for my brother, even more, since our father died of prostate cancer. My brother remains cancer free, but a cancer previvor, as I once was. Now, my mission is to transcend cancer, becoming a cancer survivor by beating back cancer. Although my form of NHL is a slow-growing version that is not fatal, still the cancer can spread to other organs, so I am not out of the cancer woods.

Today, what's left of it, is National Cancer Survivors Day, and while I an not a cancer survivor, I am not a cancer previvor either, just someone who is challenging the disease that inhabits her body. Like Jordan on the FORCE message board, I feel the need for a label for where I am now, in the middle, not pre, not sur, just there. So I am going to think of myself as a BBC-er. When I created this blog, I gave serious thought to calling it BBC, but knew my love of the British Broadcasting Company would confuse my blog's purpose. It might have brought me readers faster, but I would prefer to be found and perhaps read through a more legitimate vehicle. So I am a Beating Back Cancer person or BBC-er for short, and that will make me a survivor.

Cancer
NFL
FORCE
National Cancer Survivors Day
Energy Times

Sunday, May 2, 2010

Giving Thanks

The outreach of affection, compassion, and genuine concern for my welfare has been almost overwhelming. From emails, Facebook, extraordinary care packages and flowers sent under equally extraordinary circumstances from the givers, I have been grateful for your support. From readers on Feedjit, Tweeters, Wall posters and blog commentators to the good old-fashioned and much loved cards with handwritten messages, you have taken such good care of me. You have responded and made me feel your "arms and strength," you have reminded me that I am "not alone," and you have told me "just keep living."

You have been my cheerleaders, and I wonder if you know just how important that is to me, to anyone dealing with a disease. A comment goes a long way; it may seem small to the giver, just a click that says "I like this," but it means so much. Please accept my very sincere thank you for being there for me, for continuing to help me, even when sometimes you might not know the good that you do. You matter, you count, you are the BEST!

Cancer
NHL
Beating Back Cancer
Social Networks
Facebook
Feedjit

"Just Keep Living"

About 2 weeks ago, I officially came out of the closet--the cancer closet. Before my announcement to the faculty that has been family for 41 years, I had told a few very close friends, but not my immediate family. Intuitively I knew I needed to be physically and mentally strong to spread the news, so not surprisingly if you know me, I broke the news by blogging and posting to Facebook. My social network, along with my colleagues, were my first cheerleaders. For those of you who would wonder when I told Mickey, it was the night before our trip to Perelman Center for Advanced Medicine; I wanted to contain his agony and anxiety as long as I could.

Several days after I told the faculty, I spoke to my students. Overwhelmingly, they responded with continuing support. But there is a heartache with this story. I learned what I had always suspected: that cancer looms in every family. Two stories haunt me, and one of them belongs to a student. He gave me permission to use his name, but I would rather not. He will recognize his story.

He lives with his grandmother, whose cancer has returned. His parents are deceased. He undoubtedly worries about his future, since his perception is that his grandmother has perhaps resigned herself to not beating back cancer. His story haunts me because I ask myself how can I teach him literature or do project-based learning when he is concerned about life-and-death issues. Suggestions?

So I gave him a pep talk, as I did to several other students who have shared their stories. Here's what I believe and live, every day. Before cancer, with cancer, during cancer. It is simply how I live.

Accept but do not Acquiesce: Accept the fact that you have cancer. Face it. Deal with it. But do not acquiesce to it. Beating back cancer is an attitude. You have to cultivate attitude if you were not born with it.
Define but do not Delegate: Define your responsibilities to yourself, your family. Define what you can and cannot do, given the circumstances of where you are in your disease's progression. Live your life as best as you can, not haunted by the specter of the future. Live in the moment. Do not delegate your responsibilities to yourself to anyone else, unless you become too ill.
"Just Keep Living." Prior to leaving the classroom one Friday, I had told one of my classes a story. It was connected to something we discussed, but I cannot remember the theme. It was a funny story, and one of my students said, "Just keep living." He did not know how prophetic his words were, nor how much they meant to me in a totally different context. He became my cheerleader. Going into surgery, I remembered his words before a quick prayer and lights out.

Cancer patients and their families know about survivorship; they deal with it on a daily basis. From the side of someone who has cancer, I know that I need to just keep living. For many reasons, all of them good, I will. But I worry and pray for my students, hoping that they will have the same blessings I have had, a life sentence. And then I pray that their loved ones "just keep living.

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