Saturday, May 22, 2010

Camp Mak-A-Dream Ovarian Cancer Retreat May 13-17, 2010

 View from camp

Last weekend I had the awesome opportunity to go to beautiful Gold Creek, Montana to Camp Mak-A-Dream’s Ovarian Cancer Survivors retreat.
After a long day of travel and having to accept the assistance of wheel chairs, I finally arrived at Missoula’s airport and was met by the smiling faces of some of the camp’s staff members. After going to baggage claim, I met a few of the strong warrior survivors I would be spending the weekend with.

Caught this one walking to the cabin, 
now I understand the term "Big Sky Country"
Meeting these women and hearing their stories is an awe inspiring experience. Like me, every one of them has been treated for Ovarian Cancer and although all of experiences are similar, each of their journeys is unique. There were 12 survivors at the retreat and I loved the intimate setting that gave us all an opportunity to get to know each other.

Some of the ladies enjoying the nice weather 
The three days was spent in workshops and small groups. We had a motivational speaker talk to us about the importance of doing things that feed our heart and asking for help, an oncologist that discussed treatment advances, American Cancer Society’s Look Good, Feel Good workshop, art therapy, healing benefits of tea, coping skills and self image, time in the art studio to express our inner creativity, massages, hot tubbing and plenty of time to chat with each of the women. The staff was great about supporting us and worked very hard behind the scenes to make our stay at camp wonderful.

Sampling of my art projects

I had a couple of rough days. The trip west took a lot out of me and that and the elevation difference, I was in pain and very tired. The first day I tried to be very stoic and not let on to anyone how I was feeling however, it was apparent on my face on day two that I was not doing very well.

People came to my aid and set things up so I could sit in comfortable chairs with plenty of pillows to ease my pain, fetched things from my cabin so I did not have to walk much, and many other supportive acts. I realized that all you have to do is ask for help and you shall receive. The staff and participants were happy to help and expressed to me that it feels good for them to help others.
Jamie - One of the Presenters
Like last year, there are some women that I will stay in touch with and others that I will probably never speak to or see again, but that does not mean they will not be in my thoughts on a daily basis. I will send them healing thoughts for their own journeys hoping their treatment will be successful and they can get back to their lives pre-cancer. Although many of those with a cancer diagnosis are never really the same after they have been told those three horrible words “You have cancer”, many are able to live a more aware life and in some ways a better life post cancer.

At camp we refer to the other survivors as sister geese. Geese fly in the “V” formations. Each goose, by flapping her wings, creates an upward life to the goose that follows. When all the geese do their part in formation, the whole flock has a greater flying range than it would if each bird flew alone. In addition, when a goose lags behind, the others “honk” her back into place. And more importantly, when a member of the flock has to drop out because of sickness or injury, at least one of her flockmates will stay with her to watch over and take care of her.
"International Night"
          
The women I have met at camp have become my flockmates. We are now a part of a special sisterhood, unasked for, but deep and empathetic in our support. We have bond between us now, and all it takes is a plea for support and we will rally around. I lost two ‘sister geese’ from last year’s retreat and I will always remember Marcia and Michelle and the impact they made on my life.

To all the women at camp this year, I thank you for sharing your story with me and making me a part of your journey through this horrible disease. I am better for knowing you and will always keep you in my thoughts.

Monday, May 10, 2010

Moments of Transformation and Gratitude

Last week I went to a lecture called “Healing from the Inside Out: The Regenerative Power of the Human Spirit”. The focus of the lecture was to address the concept of healing can happen from the way we think, feel and live our life. The facilitator, Dr. Lerner, talked about a moment of transformation that people experience that often leads them to think about life in a different way. Sometimes it is caused by an illness, crisis or some type of event. Dr. Learner discussed that he has worked with many cancer patients who describe the news of their diagnosis as their moment of transformation and that in that moment they learn what is most important in life.

I found this very interesting. I think we often coast along life doing what we think needs to be done more than actually living life. That was definitely the case for me. About six months before I diagnosed I was suffering from a major depression. After much soul searching I realized that I really did not enjoy my life. I was doing many things I thought someone of my age “should” be doing. I had a good job, which although I enjoyed, it was not what I really wanted to do. I had been talking about dreams I had for the future for many years, but I never seemed to put into action anything that would start those dreams. As my New Year’s resolution I decided that 2007 was going to become the Year of Alli. Starting then I was going to figure out what exactly would make me happy and I would go after it. I changed a lot of things that winter and I have to say, I had more happiness in those months than I had in years. I started remembering what I was all about.

Then my diagnosis hit. It was not what I really had in mind when I started the Year of Alli. Looking back however, I think it was because of my attitude that year that I had the strength to get through my diagnosis. I think I did a pretty good job of balancing my illness, treatment and still trying to be happy, but I think in whole I was just coasting along again doing what I needed to do to survive. It was not until I was told I was going to die that I think I really started to live again. Somewhere along with the prognosis of death, I had my transformative moment. It took me accepting I was dying to truly live. In many ways I think I am one of the lucky ones. Not because I am still alive, but because I have had this time to concentrate on life. I think that knowing you have a limited time to live allows you to stop taking for granted all the wonderful things you have in life.

Some of the only ways I have gotten through all the treatment, physical and mental challenges of the last several years was all the good times I have had that I could remember. As I was sitting in the hospital enduring chemotherapy, I would close my eyes and pretend I was back on the hiking trails. One of my favorites is at Yosemite. I tried to remember what it felt like climbing up those trails. It was exhausting and painful at times, but I also remembered how beautiful it was the whole way up and how exhilarating it was to get to the top of Nevada Falls and look over the Yosemite Valley knowing I made it up there under my own steam. Whenever I had to undergo radiation, CT scan or other test, I would close my eyes and imagine I was back on the beach of Aruba or kayaking with the whales in Washington State. I often spent time going through pictures. Whether it was pictures of California, hiking or camping trips or my cherished pictures of my family I was always able to stir up some memory that helped me make it through the rough times.

During my lowest moments when I would feel too weak to leave the house, I would go through my “Warm Fuzzy” box. This was a box of mementos from my time in California when I was a youth minister. This box contains pictures, notes and letters from youth, crafts and other memories. After realizing how much this box cheered me up, I started collecting items from other times in my life. I never got around to putting any of these things in a scrapbook, but that is ok – a box is enough. Whenever I need a pick-me-up I just open up a box and I am transported to that moment and get to relive it.

I watched a movie last night where the main character would tuck her son into bed at night and they would list the things they could be thankful for. If the son could not find something he was grateful for, she would find a way to take what upset him and turn it into an opportunity to be grateful. I have thought about that a lot today. It has not been one of my better days. I have been feeling very weak and generally feeling crappy. It is easy on days like this to get down in the dumps and be negative, and I need to find a way to concentrate on the good stuff instead of the bad. I have decided to make it a daily ritual for me to name the things I am grateful for tonight each night as I go to bed. So as I go to bed tonight I am grateful for being able to spend another Mother’s day with my family. It was wonderful to have brunch with my family and I loved seeing my nephews today. I am grateful for their hugs. At one point I grabbed my youngest nephew and tickled him. When he had enough, he cried “Auntie, Auntie”. This is my cue to stop. It is our version of saying uncle. What a wonderful moment. I am so grateful for every moment I get so see his and all my nephews smile.

Tuesday, May 4, 2010

A bit of this, a bit of that....

Over a week has passed since I last wrote a post. Since I usually write at night when I can’t sleep, we can infer that I have been sleeping better. Until tonight that it, since it is 2am and I am exhausted but wide awake. I have thought about writing over the past week or so. I even have a list of possible topics, but there has been something stopping me from writing. I wrote several weeks ago that I have been faking it and only been showing the good stuff to people. My blogs are somewhere that I do not feel I have been faking it. Since I write at night when I am tired, I am able to write just how I feel at that moment and there is little or no filter on whether I should say something or not.

During the day, that filter is very much there. I start to think of things to say and all of a sudden, I start talking myself out of things I was going to write, worried about how people might read them, afraid my words might hurt someone or worrying if I should share so much. I then start to think about what type of things the people that read my blog want to hear. I came up with a whole list of topics. The thing about all this, I created this blog because I wanted to provide my family and friends with updates on my cancer, tests and treatments. I never dreamed that people that I did not know would want to read it. It quickly dawned on me that this blog was as much for me as it is for others, if not more so. It has given me an opportunity to let everything I am thinking and feeling out. It does not matter if I am having a great day or a bad day; I have a place to write about my feelings, experiences, hopes, fears, dreams, and prayers. The benefit of this blog format over a journal is I can share it with people and have gained so much support from the comments and feedback. Somehow people I did not know have found my blog and this has given me an opportunity to share my life, my journey with others; some in similar situations and just maybe my words can help them.

So before I talk about how I feel today, I just want to thank you for taking the time to read this blog, for taking time to comment. I love reading the comments that people write. Sometime I know the person comments, some are anonymous and some of you who I have never met, I consider you another one of my friends and support group. They say it takes a village to raise a child, I say it takes village to go through an illness and my blog has allowed me to share with my village my feelings and in response I receive so much support.


Lately I have been feeling tired. This seems to be a theme for the last 8 months or so, but there is a weariness that is added to the fatigue. I am always struggling with getting quality sleep, but that has been more important than ever. My tailbone is still causing me a lot of pain. This is very frustrating to me. It has been almost 3 months and I had hoped that at this point I could stop using the cushions, but no luck. I have two cushions that are my constant companions. I have even named them. The one I use most often is a red round rubber doughnut named Bess. Sitting in hard chairs, car rides or sitting in restaurants would be impossible without her. The other cushion I have is a blue foam wedge with a cut out in the back for my tailbone. His name is Peter and he is the one I use when sitting on sofas and cushioned chairs. I know I look pretty funny walking into a restaurant or bar carrying a red doughnut with me, but I am getting used to the stares. I am not sure why I felt the need to name the cushions Bess and Peter, but they just seemed to fit.

Last week I started taking a water exercise/therapy class at the YMCA with my mom. I have not been able to get any type of exercise for over a year due to breathing issues, balance, pain, tailbone, infections and other physical limitations. I thought about yoga, but due to the tailbone and the balance issues that is out. So we looked into something in the water. Mom and I started last week and have had two classes so far. The next one is tomorrow morning, which is why I really need to get some sleep tonight. I can tell you that this class is whipping my butt. I felt so tired after class last week. It seems like the things we are doing in the water should be easy since it is low energy, no impact and an easy pace. But let me tell you that while walking/jogging in the water is easy than on land, it is still no walk in the park. Even though it hurts and is tiring, it feels good to be able to do something besides lay around the house. I think it will even help get me back on a normal sleep cycle.

Next week I go to Montana to Camp Mak-A-Dream for an Ovarian Cancer Survivors Retreat. I went last year and it was wonderful meeting other women that have gone through the same thing. There are workshops and games, art and other fun stuff. I am really looking forward to it. I honestly did not think I would be alive right now and in no shape to travel across the country, but I have been blessed with time to be able to do this. Camp is free, but I could not have afforded to go if a wonderful friend had not provided me with his frequent flyer miles to cover the airfare. Until my house sells, I have no money to spend on anything but medical and prescriptions costs.

Well folks, I am off to sleep now, or at least an attempt at sleep. Thanks for reading.