I have been living with ovarian cancer for five years. When I was diagnosed with advanced cancer in Oct. 2003, my immediate response was of shock, horror, fear and anger. Those feelings quickly metamorphosed into creating myself as WARRIOR-"I'm going to fight this with everything I have and WIN!" Through, surgery, chemo, visualization and meditation, prayer, exercise, diet etc. I did win. My labs were normal and I was cancer-free. Until I had a recurrence of disease in the spring of 2005 and endured more surgery and chemo. Now, after additional recurrences, my process has become one of living with a chronic disease.
I've discussed the first few years of my journey in previous writing. In this article, I'll share some insights and information; my progress and set-backs and some new paths that I have discovered on this journey. I'll also discuss how living with a serious chronic disease has affected my relationships with my spouse, family and especially how it has affected my relationship with myself. Anyone living with any serious chronic disease can probably relate to how it can be that other energy in the room-always there with you-the elephant in the room that we are all aware of, but might not be talking about. Let's talk about that BIG, FAT, GREY ELEPHANT; acknowledge it and perhaps figure out ways of changing our relationship to it.
The first conversation I'd like to focus on is the physical relationship I have with that energy; that elephant. Presently, I am on a regimen of going in monthly for labs, doctor visit and chemo. A few days before my appointment, I feel the apprehension, fear and uncertainty creep into my mind and manifest in my body as tight neck, jaw, and shoulders; insomnia and "nervous tummy." My brain will shift into the what-if's: what if the CA-125 (cancer marker) is going up; what if the chemo stops working; will I have to go through unpleasant procedures. Sometimes, these negative ruminations will keep me awake at night or be there as a waling thought. My energy levels are down, especially the first week after chemo, and that affects my exercise routines and activities. I've switched from aerobic step class to walking on the treadmill. It's a reminder, from that elephant, that my health is compromised.
Normal aches and pains, coughs or headaches, can take on new importance when the elephant keeps asking-"Is the cancer back?" Fear and uncertainty are the main components of the elephant and they affect not just me, but my loved ones and friends. They know when I'm due for lab work and experience tension and concern around that time. My sister knows that it's good news if I call her first; if she calls me (because I've postponed calling her), it's not so good news. My husband can read in my eyes what my concern/fear level is. My tone of voice can betray me to my Mom. The elephant is not just with me- it's with all of us. I've learned, and I practice, several techniques that help bring me back into balance; help me sleep better and awake more refreshed. I've also learned to better "let go" of fear and worry.
As I've used these techniques, I've found that the elephant gets smaller, more transparent and, sometimes, even disappears. Deep breathing, relaxation exercises, and focusing on my heartbeat when my mind feels chaotic, all help bring me back to the present moment; back into my body and out of my head. Yoga classes 4 or 5 times a week, as well as, walking and mild aerobics help me focus my attention on being here, right now, in this body. Focusing on my heart beating; my muscles working; each footfall on the treadmill, banishes fear. Part of this awareness of body includes talking to my body-talking to the cancer. "I've lived with you for five years now. I've learned many lessons and will continue to learn. And now it's time for you to be GONE! I really, really, really, really want you GONE!" Awareness of my body also includes honoring it-what do I do with it; how do I treat it and feed it and do special things for it like eat chocolate and truly appreciate every morsel. I thank my body for how hard it works and for all the complicated things it does everyday.
I ask my body to communicate with me- "I'm listening; I'm paying attention; talk to me and let me know what I need to pay attention to. I'm fortunate in that I live with a stress management expert, my husband. He's taught me many exercises and strategies for controlling my anxiety and physiologic responses to stress. I invite you to check out his website where he has many articles offering information on these techniques. In addition to exercise and practicing stress management, I also pay attention to my diet and take supplements, following the recommendations of my naturopathic physician. He guides me in not only what to take, but how to take it so that nothing interferes with the effectiveness of chemo. This is important. There are so many products offered in stores magazines and the internet claiming to cure cancer and other diseases. Having expert advice and coordinating with your physician is a MUST! Acupuncture is another component of my wellness program. I feel that having acupuncture a few days after a chemo treatment helps rebalance my body and minimize side effects.
I believe that my wellness program which includes diet, yoga and exercise, acupuncture, naturopathic physician visits and supplements is helping me live well with cancer. Unfortunately, my insurance does not cover any of it, which leads me into our next 'elephant' discourse.
Illness is expensive and packs a big financial punch, even if you have insurance. It uses up sick days and impacts job performance. After each surgery, I went back to full time work a little early so that I wouldn't run out of paid time off. In hindsight, I probably should have worked less and rested more, but a tight budget is a hard task master. I am fortunate to have a good health plan that does cover most of my bills after a hefty deductible. Even with my medical coverage, alternative adjunctive therapies like acupuncture and supplements are not covered and I have to budget and prioritize what will be most helpful and what can I afford. So many people are not so lucky and compile huge medical debts. It is easy to feel overwhelmed while you're working so hard to stay well. Taking time out everyday to shut off the worry for a time and practice stress management can help minimize overwhelm and reduce some of it's side effects such as muscle tension, headaches, stomach upset and insomnia. When I feel the tension and upset building, I stop-get quiet-and listen to my heartbeat. I say to myself-"my heartbeat is calm and regular" several times and breathe deeply. This simple exercise calms me and helps quiet the 'mind-chatter' that can lead to overwhelm.
This past year has brought an acceptance of the chronic nature of my disease. It has also brought new ways of thinking about money and finances. I've always been a saver; always have a savings account; put money aside for a rainy day; pay bills on time; don't run up credit cards and save up for what you want. Living with the uncertainty of my prognosis and life span has led to new ways of thinking,(prompted loudly by the elephant, of course). Now, it's I want to renovate the bathroom now; I want to go to Europe in the spring; I've hated that green sofa, with the stuffing coming out, for years and I want a new one. I don't want to wait until I can afford it. I might not be here! I'm impatient and want things and experiences now.
I hear friends and family talk about their 5 year plans; the world trip they'll take in 2 years when they retire; their long-term goals and I want to squish all of that into right now. My impatience, driven by my fear and uncertainty, battles with my fiscally conservative nature and the realities of my budget. And naturally my impatient wants impact my husband's view on finances. The elephant is sitting on both of us when we have our financial talks. It's very difficult to find a balance between splurging and running up a big debt, and being financially responsible. Suppose I use all of the equity loan for my right -nows and I live another 5 years? I'll owe all that money! Or, if my time here is done in a year, my husband will have to pay it back. I don't want to saddle him with that. My compromise is to keep a responsible budget with some splurges throw in. The new couch and matching chair, in my living room, look great and are so comfortable. I enjoy looking at them and sitting in them.
The European experience and bathroom renovation are on the back burner, to be revisited another time. I pay down my credit cards and keep money in my savings account. I shop at thrift stores and clip coupons and save up for splurge items. When John and I are kind and loving towards one another while having our talks about tough things, the elephant loses power; gets lighter and sometimes floats away all together. And while my short-term plan is to take each day as a gift and live in the present moment, my long-term goal is to expect and be open to miracles. I have always believed in the possibility of being able to disappear this disease from my body and live the next five years without cancer. The late Carnegie Mellon professor, Randy Pausch, died of pancreatic cancer recently. He posted his last lecture on the internet. In it, he said, "I am maintaining my clear-eyed sense of the inevitable. I am living like I'm dying. But at the same time, I'm very much living like I'm still living."
The emotional component of chronic disease is huge. While we are "living like we're living," our well-being is hooked up to the next lab report or CT scan. It can be so easy to get caught up in being a victim to Fear, Anxiety and Uncertainty. Sometimes, the elephant even throws Envy into the mix. I will find myself envying those are not only healthy, but take that health for granted. Or occasionally, when the elephant is in really good form, I'll hear a niggling voice in my head directed towards the woman over there complaining about her laugh lines or cellulite. If only that's all I had to worry about. With daily, vigilant practice, I'm much better at banishing those nasty thoughts and envious feelings. I've also realized that the Big Three-Fear-Anxiety and Uncertainty- are not part of my daily 'being,' When those feelings come up, I'm better at letting them go. Sometimes, it's as easy as saying to myself, "Be Here Now, Barb." And, sometimes, it doesn't work and all the questions come up.
Will I be here to dance at Katie's wedding in July? Will I dance at my sons' weddings? Will I hold my grandchildren in my arms? Will I be missed; have I made a difference being here; what more can I be doing with my life while I'm still here? And the really big one-how will I handle my dying-which brings up fear of death itself. Even while I'm writing this at the kitchen table on a stormy day, I feel the elephant -VERY BIG- in the room. To deny that these questions are here is to make the elephant even bigger. So I write this article, and I write in my journal. I acknowledge and accept the fears, and I seek guidance and pray. I strive to focus my attention on how I want to live, instead of on I don't want to die. And I cultivate inner peace and rich emotional and spiritual 'beingness'. Dr. Morry Edwards, a licensed psychologist who specializes in treating people with cancer and other chronic illnesses, offers these "Ten Habits for Cultivating Inner Peace."
1) Make a point to start and end each day with a positive thought.
2) Develop a daily practice of becoming quiet enough to experience what calmness really feels like.
3) Try to acknowledge 100 blessings a day, to notice all the beauty and small miracles that surround you.
4) Create the best individual healing path which includes exploring all avenues that can generate growth, peace, and harmony among body, mind and spirit.
5) Be proactive and informed so you can pick your treatment team and participate actively in decisions that affect you.
6) Be willing to accept your thoughts and feelings so you can change them or make peace with them.
7) Stay in the moment instead of worrying about the future or holding regrets about the past.
8) Stay focused on what you still have rather than what you have lost.
9) Experience the wonder of a spiritual connection. It may be difficult during this time to understand "why?" but an overriding sense that there is some purpose, is essential to inner peace.
10) Focus on what is meaningful, joyful and makes you feel productive.
A large part of my journey of the last five years has been exploring and experiencing "the wonder of a spiritual connection." I've always believed in God; in the Divine; in the concept that we are spiritual beings having a human experience. As many questions I ask in my search for answer, the more questions I generate. What do I have control over-what do I give up to the Divine? Can I prolong my time here or is my time of death preordained at the time of my birth? How do I find comfort when I feel so unready to leave this earthly plane?
Earlier in this article, I talked about self-talk- having a conversation with my body and how it has helped me feel more calm and in control. On a higher level, I practice soul talk or prayerful conversation with myself and with God. I truly believe in the power of prayer. I've heard of or read about many instances of people being cured miraculously, when there was no hope of recovery, after a group of people got together and prayed for them. It doesn't matter what your concept of the Divine or God is. The power comes from the collective gathering of sacred selves for a common purpose. As I wage my personal physical battle with cancer, my prayers lift me beyond the corporal self to a new plane of being. An Native American chant expresses this so well. "All of a sudden I feel myself pitying myself, meantime my soul is being blown across the sky." In my daily practices, I've been learning about Wayne Dyer's teachings- "Learning to Manifest." When you want something, you really, really, really, really have to want it. The first "really" is the Wish-please help me create what I want in my life The second "really" is the desire- be willing to ask for what you want. The third "really" is the Will or Intention- I will create this in my life and I intend to get it. The fourth "really" is the Passion- hardening the will and have a passion about what you want. We're all probably familiar with the phrase-"as you think, so shall it be." I believe in the power of thought to create what I want in my physical world.
Focusing on being in my body-talking with and listening to; honoring and taking care of; practicing stress management and exercise is the first step to creating what I want. Being true to myself, speaking the truth, and practicing fiscal responsibility and splurges is step number two. Cultivating and nurturing emotional and spiritual health and well-being are the third and fourth steps to manifesting what I want- physical health and inner peace. Right now, the storm still rages off and on, but I'm warm and comfortable in my new chair. No elephant here sitting across from me or whispering in my ear. I've no doubt that it will show up again. But I have found that the more I practice the things I've discussed in this article, there are fewer visitations and the lamentations are quieter. And there are whole stretches of time, days even, when the elephant is gone.
Someone wonderful sent me this wonderful message: "I am not going to live forever; but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert everyday (if I feel like it.)
As I prepare to celebrate the holidays with my loved ones, I am filled with gratitude. Lovingly decorating the tree with ornaments I tucked away last year (not knowing if I'd be here this year) takes on new meaning. Each ornament has a special memory and I enjoy the remembering. When we clink our glasses to toast the New Year, I'll be looking forward to spring bulbs popping up; visits with family and playing in my garden. But mostly, at this moment, on this day, I shall immerse myself in the present: the sun peeking through dark clouds; a formation of geese winging south; an old Rosie the cat, snoozing in the chair with me; and me feeling healthy and alive.
BE HERE NOW, BARB
Barbara Ehlers-Mason, RN has partnered with her husband in writing articles to assist cancer patients and parents. She offers coaching to cancer patients and parents (regarding parenting issues) through the Stress Education Center. Her first 3 articles are available at our website and at ezinearticles. Barbara's husband, L. John Mason, Ph.D., is the country's leading stress management expert and the author of the best selling "Guide to Stress Reduction." Since 1977, he has offered Success & Executive Coaching and Training.
Please visit the Stress Education Center's website at Stress, Stress Management, Coaching, and Training for articles, free ezine signup, and learn about the new telecourses that are available. If you would like information or a targeted proposal for training or coaching, please contact us at (360) 593-3833.
If you are looking to promote your training or coaching career, please investigate the Professional Stress Management Training and Certification Program for a secondary source of income or as career path.
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