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.

Saturday, August 30, 2008

In a moment

In a moment....our lives can change. In an instant.

Safety is an illusion.

I work as a nurse in an intensive care unit. Last week a health care worker drew blood on an HIV positive patient and then accidentally stuck herself with the dirty needle. A life-changing moment, a life-changing instant.

I've thought before that I wished life had the same "undo" button that exists on my word processor, my email program. I wish I had an undo button that I could keep in my pocket. How would life be different if we carried undo buttons? I know that health care worker so wished she had access to an undo button. That she could have rolled back time to the instant before.

I was supposed to also draw blood on that same patient later that day. It made me feel vulnerable...I've stuck myself with dirty needles already twice this year. I'm unlucky with needles. Another nurse I worked with, who had young children at home, drew the blood instead of me. She said she had no fear, even after the incident that same day with our colleague. She felt my discomfort might make me more likely to have an accident, so felt she was the better person to draw the blood. I was ashamed I wasn't more courageous. She was my hero that day. I was weak, she was strong.

But I used to be the fearless one.

I don't want to blame cancer, but my cancer experience has made me feel more vulnerable. The bad thing doesn't always happen to someone else, sometimes the bad thing happens to you. The unexpected thing. The thing you never would have predicted.

Over the years I've drawn lots of blood....many times in an inner city ICU. Many of our patients were IV drug abusers. They hadn't been tested for HIV, but I'm sure some would have tested positive. But before cancer I drew their blood all of the time without hesitation, even those with a pending HIV test (years ago I even stuck myself with the dirty needle of a patient with an HIV test pending..his test later came back negative).

But before cancer I felt safe. I didn't feel as vulnerable.

After cancer, though, I know all bets are off. I vividly remember when I first learned I had cancer. My own life-changing moment.

I know now my future can change....in an instant. Anyone's can.

Thursday, August 21, 2008

My Absence

I'm sorry to have not posted more recently, but my life has been chaotic lately (but will settle down soon). I love writing here and love the feedback I get....this blog has become very important to me as it connects me with others who share a similar experience. I feel badly when I neglect writing here. I also love to write, and the writing here is therapeutic for me...and if it benefits others also, I KNOW it is a good thing and that I need to be "here".

I left my eldest and firstborn at a college today...three hours away from me. We have been very close, and now that we are apart, I admit to being afraid. Afraid that her life and dreams will lead her away from me and that we will one day become distant and not enjoy the closeness we share now. Afraid that a purpose I've had in being a parent for 18 years will become insignificant, that maybe I will lose my value? I worry that she will make a mistake she will be afraid to tell me about, that she might make a mistake that will alter the course of her life forever and squash her dreams. And control freak that I am, I have to learn to relinquish control of one of my own and to let her take control of her own life now, as she should. I'm sure I am thinking of many more things that I haven't yet put to words. But all day I've easily come to tears. I asked her to please not be sentimental and to be obnoxious as we left so that I wouldn't feel so sad, and she tried, but failed. I've cried on and off all day.

But today made me think of a lot of things. Life is transitions. Transitions and change are normal. They promote growth. Our lives are not meant to be a slow and steady journey along a predictable path...growth only happens when we experience the unpredictable, when change happens. Change in our lives is a constant that we should expect.

I'm sad my child, whom I've loved beyond all measure for 18 years, is beyond my reach. But I know she is where she should be, that my job ultimately was to let her go. Letting go is a transition in successful and honorable parenting. Loving parents are supposed to let their kids fly....even away from them. Real love isn't always holding close.....sometimes real love is in the letting go. Controlling love that hangs on too tightly stifles growth. I don't want to prevent my kids from growing into the people they were meant to be.

In hindsight, though, a cancer diagnosis adds a new twist to every normal life transition. Letting go, or being forced to let go, was something I had to contemplate when I was diagnosed. I faced losing my kids, losing my husband, losing my home, losing my job, losing my health, losing my extended family and friends, losing everything in my life all at once and against my will. I faced a monumental and unimaginable loss. Sometimes now I feel badly that I don't have more sympathy for those who lose jobs or houses. They've only lost a job, only a house. It is a loss, but they haven't lost EVERYTHING the way many I've met with cancer have.

So as hard as it is to let go of my kids, I love that I am able to do it the way nature intended, when I have finished my job of nurturing them to adulthood. When the time is right. I celebrate now that my kids can leave me by their own choice and when the time is right for us to be separated, that I wasn't forced to abandon them 7 years ago. I count my blessings all of the time now.

It's hard now, but I know it could have been so much harder.

Monday, August 11, 2008

The Difference We Make

I'm sorry I've not been "here" recently. My life has been kind of overwhelming for a bit. I've been working full time in a hospital's intensive care unit...I love the work but I don't usually work full time. I have been trying to keep up with my passion for cancer advocacy, that's at least another 20 hours a week. I've also been getting my eldest ready for her first year away at college...it's really bittersweet. I'm so proud of her and her desire for independence, but I cry a lot lately over small sentimental things. She leaves in a week and a half. Saying goodbye to your kids is so hard.

My cancer experience very much impacted my kids growing up. They had to contemplate the potential death of a parent, a sick parent, a parent with a port they felt every time they hugged her. But I think in the end it impacted them in a good way. They are compassionate and caring and love others well. But I've been tearful a lot lately. Letting your kids go is the right thing for a parent to do, but it's also very hard. We've got camcorders and have already practiced video chatting for when the time comes and we are hours apart. Tonight we stayed up late and had tea and remembered when they were 7 years old and used to send me notes via paper airplanes from their room upstairs asking to have one last cup of tea with me before they fell asleep.

Letting your kids go is good and right...but it's hard, though this way is a better way than when I contemplated leaving them while they were still in grade school. This is the right way to separate from your kids.....when they are ready to leave and venture out and try life independently using what you have taught them. Not when they still really need you.

So tonight I was thinking of legacies. I saw this video about Dr. Folkman. He did what I really want to do. He was passionate about something, he inspired others, he made a difference that will reach far beyond his own life. I want to be like him with the time I have past childraising. He had a vision. He died recently, but he made a difference. Watch this about Dr. Folkman

Since cancer, though, in the times I've obsessed with purpose in survival, I've often thought that maybe it's the little things that are in the end the big things. We all probably want to do something significant that everyone recognizes, but in the end it will maybe be something small we did that was unrecognized in this life that in the end changed the world. And that maybe we'll get to learn about our huge and significant contribution that didn't get noticed here when we get to heaven. Maybe in the end we'll find out the people we thought didn't do much in reality changed the world.

I've read a few times the story of the kid who decided to help another kid walking home from school who was carrying way too much stuff. They didn't know each other, but the one kid saw another carrying a huge load and offered to help. They struck up a conversation and in the end developed a friendship that lasted many years. Only years later did the one boy tell the other that he was carrying so much that day as he had planned to kill himself when he got home and had emptied his locker to save his parents the trouble after he was gone.......but the conversation and resulting friendship that ensued on the walk home that day had made him change his mind. Maybe that was the kid who in the end lived long enough to cure a terrible disease...only because someone else offered to relieve his load on a walk home from school. Maybe that short walk and conversation in the end changed the world. Maybe everything we do is important and has an impact.

But most of all, though, I'm grateful tonight to have lived long enough to help my children leave me.

And I am grateful that I am here to contemplate all of this. I don't take that for granted.