My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Wednesday, August 26, 2009

Beginning, Middles and Ends

Sorry I have not posted in awhile. My life has been kind of busy lately, getting both of my kids off to college. I am officially an "empty-nester" now for the first time. I have been an "empty-nester" for 7 days.

My kids have been calling often, so we are still in close touch, and my youngest plans to come home to visit often. I'm so glad for that (even though we ran over on cell phone minutes!).

I talked to a mom a few days ago who has one in college and another a senior in high school. When I mentioned to her I was an empty nester now as both of my kids are away, she got a look of dread in her eyes. She is terrified of her upcoming empty nester days. Another empty-nester mom wrote me yesterday...she is a few years out in the experience, and two of her kids now live out of the country, one in Japan and one in the Middle East. Once we let them out of the nest we don't know how far away theirs lives will take them.

I know lots of women experience a crisis when their kids leave the nest. I'm not having a crisis; but I guess my perspective is different.

When I was told I had an untreatable cancer and not expected to survive, all I wanted in life was to be here long enough to raise my kids to independence, to see them off on their own independent life journeys. So for me, in a sense, it's a celebration to have made it this far. When I was diagnosed, I did not want to abandon my kids when they needed me, I wanted to live long enough for them to "abandon" me, to fly off on their own wings as adults. I have realized that dream and am very, very grateful for that.

While I love and miss my kids, I want them to be able to achieve dreams and to be independent and not to rely upon me solely, as they did when I was diagnosed. I want them to yes, care about me and love me and for us to always be close, but I don't want their future to depend on my presence...as cancer made me understand how fragile my presence is. I want them to have dreams and goals and hopes that are theirs to motivate them, to have lots of people who support them whether I am here or not. They are amazing people and have so much to offer this world.

I always pursue spiritual growth. To me it's why we are here...I have always believed we are first spiritual beings having a physical experience vs. physical beings having a spiritual experience. To me our physical presence isn't "it", our experience in this lifetime is just a piece of a larger puzzle.

In a grocery store checkout line recently, I was intrigued by a booklet entitled "Complete Idiot's Guide to Spiritual Healing". In many ways I am a novice in life, and I am not very proud, so I love the "Idiot" books. I already own a few. I paid the $2.50 for the booklet, and haven't read it all yet, but there was a paragraph I flagged in the beginning from the chapter that I liked, "Beginnings, Middles and Ends".

I've been at all of those points with my kids...beginnings as a new mother, middle times when I was raising them, and ends, now, when they are on their own as individuals with their own dreams and values to guide them.

The paragraph I flagged in the "Idiot" booklet said this..."Life is a series of beginnings, middles and ends. Each ending is the start of a new beginning and each beginning is the start of a new ending. Often we have a hard time letting go and trusting the process. We fearfully hold on to something when it is time to let go and miss the joy life has to offer". I agree.

I am so fortunate...I've lost friends to appendix cancer who still had children under 5 years old. I've lost friends who were in the middle, with pre-teen and teen children who still needed their mom. I've lost friends who were never able even to realize their dream of being a mom. One in her 30s died only an hour after I met her in Texas. So many lives cut short. I've lost a lot of friends to appendix cancer; that tempers my empty-nest perspective now.

So I see this empty-nester time as an end of sorts...of my kids needing me less and being less dependent on me, but also a time as a new beginning, for them and for myself. While I feel a sense of loss, I also feel a sense of liberation. For my kids and for me, it is a not so much a time of endings, but of new beginnings. I'm not done yet, and neither are they.

I'm so glad that my kids, and I, have that opportunity. For a new adventure, a new beginning. I am so grateful for this time in our lives.

Thursday, August 13, 2009

One Day At A Time

I get frustrated sometimes at how the idea of living "one day at a time" is glamorized. Appreciating what each new day brings and enjoying the good things in your life every day is something many are better at after a cancer diagnosis, but that's not the same as living "one day at a time". Many of us after a cancer diagnosis do involuntarily live "one day at a time", because we lose the ability to think of our life in future terms. We understand profoundly that we may not have a future. It's a tough way to live.

When I was diagnosed with a high grade Stage IV cancer, the survival statistics I found in medical literature indicated my odds of dying within 3 years were 9 out of 10. I have always trusted statistics. I am medically educated and for the most part diseases in patients I've cared for, with few exceptions, have followed documented statistical patterns for their illness. I'd seen some odds defied over my decades of caring for the ill, but not often. So I trusted my own disease statistics.

For the longest time after my diagnosis I was unable to plan for a future. I could not schedule appointments for 6 month dental cleanings. I could not say the words "next year". I couldn't commit to vacation plans. I had trouble making career commitments, so I did a lot of volunteer work. When I returned to work I chose PRN employment that required minimal commitment.

I think we take for granted how often we assume a future. We take for granted all of the times we say without thinking "next summer" or "next Christmas" or "when my kids are older" or "when I retire". When I could no longer take a future for granted, I learned that much of what makes our lives worth living is anticipating a future, reaching for goals, realizing dreams, making plans.

I have now survived cancer-free for eight years. I can say now "next year", though I will never think about or make plans for a retirement...I can't think that far into the future still. I know from my own experience how quickly the bottom can fall out of our lives. I know with certainty none of us is promised tomorrow. So I plan a bit for the future now and have learned again to set goals and dream a bit, but it will always be with reservation. I am no longer naive. I no longer assume I will live to old age.

I miss still the old before-cancer days when I took time in my life for granted, when knowing that bad things could happen was an intellectual but not emotional knowledge.

My kids are young adults now. They see their future as wide open. They are making plans for this year but already contemplating where they will live next year, whether they will change their college majors, whether they might one day marry or maybe stay single or live in another country. They think maybe one day they will have children or maybe not, maybe they will adopt instead of having their own. They take for granted a future of endless possibilities and dreams. I remember when I once felt that way.

As I watch my kids dream of the future, at the same time I am trying to support the family a 23 year old cancer patient who will soon lose his battle after a two year fight, who is now living without plans for a future after almost completing his college education.

I hope my kids get to keep planning and dreaming....to stay naive for a long while.
I hope that they don't have to live "one day at a time" until they are very old. That they continue can dream of endless possibilities for the future. That they never feel their future is threatened.

Tuesday, August 4, 2009

Empowerment

I have a kind of interesting story. I had joined our local YMCA gym awhile ago to work out, get fit, and lose weight. I was working out several days a week, and I guess got kind of bored with the gym routine so decided to check out some of their exercise classes. They offered a Tai Chi class, and I decided to enroll. An appendix cancer patient I was in contact with was getting a Master's degree in Chinese medicine, and I'd heard Tai Chi was a kind of "moving meditation", so I was intrigued. It turned out the YMCA class was canceled, so I checked in my community to see if anyone else offered Tai Chi classes. I found one and joined. It turned out, to my surprise, that the class wasn't about the "mind body moving meditation" form of Tai Chi, but Tai Chi as a martial art focusing on self defense.

As a teen and young adult decades ago, I'd been physically abused, so know what it's like to feel physically vulnerable. I also backpack with another woman, and we'd been told before by rangers to be careful as women had been attacked in wilderness areas where we wanted to backpack. I'd toyed with the idea of taking a self-defense class before, so decided to stick with the Tai Chi martial art class.

In my Tai Chi class we learn how to disarm and disable anyone who might attack us. Tai Chi is actually a deadly martial art. We also learn pressure points...amazing, I've had a martial arts master use pressure points on my arm that made me unable to use my legs. Tai Chi as a martial art relies heavily on the use of pressure points.

Tai Chi is hard for me as it requires me to be very focused on detail in movement, to move slowly, to learn complicated postures and form....being strong and fit and large means nothing in this martial art, technique is everything. It requires discipline, confidence, patience and concentration...all good attributes.

But to me it is so empowering. It gives me tools to defend myself; it gives me confidence, it makes me less afraid to do things I might want to try solo as a female. Fear is so limiting. I don't want to be afraid. I want to feel strong and confident.

I think a sense of empowerment as a cancer patient is vital. Education and knowledge empowers us. Having choices empowers us. Feeling a sense of control empowers us.

Empowerment is a good thing.

One of my goals is to form a group for cancer patients at a large local oncology practice. Not a "support group", but an "empowerment group". A group of cancer patients who can share ideas and knowledge and resources. Cancer patients who give confidence to and yes, even support each other. Who gather strength from each other. Who empower each other in our battle against cancer.