2009 FALL THREE DAY YOGA RETREAT

What would you expect when you walk into a roomful of women with breast cancer? A bunch of older, morose women? Lots of anger, tears and pitiful faces? Well, you haven’t been around enough women with breast cancer. I recently attended a three day yoga retreat put on by the Libby Ross Foundation (http://www.thelibbyrossfoundation.com/) for women with breast cancer. Though most refer to themselves as survivors, I prefer to refer to us as warrior queens, women of exquisite strength and grace!

My friend Connie had attended one of these retreats last year and insisted I had to go, even though she would be unable to go with me. My first inclination when walking into a group of strangers is to mentally pigeon hole and label the different types of people and to see with whom I have the most in common. At first glance this was not easy as there were such a variety of women there, young, old and in-between. Some had outward signs that they were dealing with cancer: wigs, head scarves, recently returning hair. Some looked like they were tri-athlete competitors; some looked like the average every day woman you see on the street. One thing I did notice about most of the women there: their smiles. The retreat promised three days of pampering and yoga, but as we introduced ourselves to the group there was more of a commonality that we were there to connect with other women battling this disease and to give and receive strength from the bond that had unfortunately united all of us.

In the capable hands of the two instructors, who both have a connection to breast cancer, we breathed, stretched, moved and breathed some more. There was no coddling and pitying of our situations, just adaptations to our unique abilities. We were encouraged and sometimes pushed to learn what we were capable of, not what we were not. We were also taught how to calm and restore our energies, spirits and sense of well being. Though most of the time was spent learning and practicing the art of yoga, during meals and free time we could get to know each other and learn who everyone was, how breast cancer had affected us, who each of us were before and after our diagnosis’s.

Personally, what I got from each of my new friends and sisters varied with each woman I got to know. Some of the women were so energetic and joyful that I could feel my own energy and joy grow with each moment I spent with them. There were several women whose constant giggles embedded in me a lighter sense of my own struggles and I loved them for that. Some women, who were more on the spiritual side, bestowed to me a calmness and an inner connection to my own spirit and hope. Others, whose inner strength radiated outward, helped me find my own strength. Even those whose illness made them appear more vulnerable, seemed to allow me, and others, to feel free to express our own fears and not feel ashamed or weakened by them.

Though I’ve classified some of these women by certain attributes, the real truth is that each had a little bit of the spiritual, vulnerable, strong, joyful, and, especially when encouraged by our yoga instructors, energetic side of them! I think we instinctively knew what someone else needed and gave that part of ourselves to encourage what someone else needed at the moment of our interaction.

Our three hosts, Lori, Gabby and Kathryn, made it their mission to make sure that each and everyone felt relaxed, papered and cared for. The facilities were wonderful, the food exquisite and the little treats and goodies were all very much appreciated. I can’t thank them enough for sponsoring this event where all but transportation and accommodations were provided by the foundation. Yet, each time we thanked them, they insisted on thanking us for attending. These women gave their all and have lived up to the foundation’s mission and in doing so honored Lori’s mother, the name sake and inspiration of the foundation!

Before the retreat I stopped in Savannah to spend a few days visiting my mother. Due to her Alzheimer’s I felt I could not be completely frank with her about how I felt and how I was doing. It was torture. I don’t know if it was because she could not remember that I had told her of the cancer’s return and I didn’t think it was fair to constantly remind her of that, or because she taught me so well that I felt guilty lying to her each time she asked me how I was doing. I felt an acute need for her to be my mother, to put her arms around me and comfort me, but I couldn’t ask her for that, and it hurt. None of her children live nearby, but because of circumstances, I was able to visit more often. We are very similar and even as she lost much of whom she had once been, visiting her had always been pleasurable. She began to lean on me and I enjoyed doing things to help her, even though her stubbornness sometimes made doing so extremely frustrating. I hate that I cannot be there for her as my treatments and health make it increasingly more difficult. My siblings have stepped up, but she continues to let me know how much she misses me when I’m not there. So I have lost the ability to have the mother I need and be the caretaker I chose to become.

On a lighter note, here is an interesting fact I learned this weekend: Saline implants glow in the dark in a disco setting!

Fighting the brave fight, somewhat

Sorry for my silence, I find that I can’t seem, or don’t want to, write when I am depressed, and depression overtook me for a few weeks. Part of it was dealing with some chronic pain, which may or may not be related to my cancer. Part of it has been dealing with doctor’s offices, insurance companies and the everyday hassles of managing a house, a job and a family. Our home owners insurance was raised by $1000 due to our area being prone to storms. However, we haven’t had a big one in the 6 years we’ve been living here and I come to find out that they have lumped us in with the vacation beach areas. We don’t have a vacation home, but we get to share in their financial risk pool. Then our medical insurance raised our co-pays and deductibles. What we pay for our medical insurance and my co-pays just for my monthly treatments will come out to over $11,000 for the year, out of our pocket. Our yearly pay increase doesn’t come close to that. That doesn’t even count our pharmacy costs and any special tests I will have to see where my cancer is going. Nor does that count Doug’s expenses, which include a $15 charge every time he has to call into his cardiologist because his INR is too low or too high and they tell him how to adjust his Coumadin dosage. Insurance will not cover that at all. However, without insurance, just my monthly treatments alone would costs over $60,000 a year. Not that the insurance company pays that, they get discounted rates so they pay about $36,000.

***warning: political opinion*** If you don’t understand the need for Health Care Reform, think about this. We pay $8000 a year for our insurance premium, with Doug’s employer paying, I presume, a good bit more. The insurance company pays out their discounted rate of $36,000 (but remember that if a policy holder doesn’t get sick, they and their employer still pay the premiums, and the insurance company adds that money to their profit.). However, for people without health insurance, they would pay the entire $60,000, unless of course they are indigent, then they possibly get free, but maybe substandard, care that I subsidize both in my insurance premiums and my co-pays and co-insurance, or when I have to pay it all out of pocket because I haven’t used up all of my assets to become indigent yet. There is something wrong with this picture.

Taking a look at the actual bill for my treatments, I think that the office visit charge for my oncologist is very reasonable at $136 considering her years of training, continued research, knowledgeable treatment considerations and the personal care she gives me and all her patients. The cost of the care for the nurses and medical staff are also well deserved. I do question the extreme cost of the medications I receive, which is approximately 90% of the $5000 monthly treatments I get. Yes, over $4500 goes for two medications I get. I would love to know the actual costs for manufacturing them. I understand we are paying for the research and development, but if there are just 1000 other people on these medications (and I’m sure there are many, many more across the US) would $54,000,000 still not cover the cost of research and development?

When I let go of my concerns about the financial end of things, I start to contemplate my future. I think of the things I always thought I would do ‘someday’ and realize that someday will never happen. Between all the medical appointments, feeling sick and expenses, much of these dreams have been relegated to wishful thinking. Even goals to fix up my house have been tucked away into my little secret box of unessential wishes. Even with a positive outcome, I don’t know how the job market may influence our place of residence and our planned timetable for retirement is now totally derailed. I weight hoping for a good prognosis and a long time being around, thus needing to conserve funds, with planning to live each day to the fullest and realizing some of my wishes in the time I have left. But most of all, I think it is the uncertainty that bothers me the most.

When I first had cancer I was told, don’t be pessimistic, many people survive breast cancer now days. Then when it returned and metastasized, I was told, yes, this is terminal, but with new treatments, you can live with this for a long time. Now, how am I going to be strong when I don’t know how long I’ll have to be living this way? I’m sure I could do it for a few months, suck in the pain and fear, settle my affairs and put on a brave front. But, if I’m going to be terminal for twenty years, that makes it a lot more difficult.

How do I figure out what future to plan for? Do I just go on like before? How do I incorporate having stage IV cancer with planning for retirement, grandchildren, long wanted trips? What do I tell myself? Then, how do I prepare for the end? I mean, my planning will be much different if I’m going to die in a few years as opposed to a couple of decades. Sure, anyone can die tomorrow, but when you have cancer, the reality of it smacks you in the face every minute of every day.

One more bit of grumbling before I stop my ranting for today. Recently I’ve been paying more attention to tributes to people who have died of cancer. Almost always you read how this person was strong, fought a brave battle, never complained and lived each day to the fullest, right up to the end. I’ve known some people like that. And yes, like everyone else I have admired them for it. However, sometimes I feel it is just one more impossible standard to try to live up to. I’m not saying that we should memorialize our loved ones and friends by including that they were sometimes whiny, complaining, and demanding as I’m sure everyone gets to be one time or another when fighting this disease. I just wish that I didn’t make myself feel like I have to be as stoic, strong, and wonderful as I think the others were. And yes, I know this is of my own making, the quiet hero we all would like to see ourselves as. I guess I’m not going to be that quiet hero, I don’t think it is in my nature. But hopefully I can still inspire those of you reading this to continue to love, laugh and cry with me and to appreciate every day you can take a breath in and breathe it back out.