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, May 30, 2007

Balloons

I've been attending several school concerts and end-of-the-year functions lately. My eldest daughter has been part of a school music program since grade school and is currently involved in two high school orchestras, the school's advanced orchestra and the elite chamber orchestra. The end of the year city-wide concert was last week.

Our school system has always combined orchestras in a final concert involving those from all of the schools in the city. The combined grade school orchestra plays selections, followed by the junior high orchestra, followed by the three divisions of high school orchestra. This way those new to the orchestra program in grade school can hear the awesome advanced and chamber high school orchestras and be inspired. Parents can see the progression of talent through the years as children graduate to ever more sophisticated musical achievement.

And every year seniors have mylar balloons tied to their orchestra chairs to signify they are graduating and that the concert is their final concert. They are honored individually at the end of the concert.

While in grade school, my daughter heard the high school concerts, and her dream was to be a member of those orchestras. She is now first chair in the most elite high school orchestra in the school system, the chamber orchestra.

Next year she will have a balloon on her chair and when I see it I'm sure I will cry most of the way through the concert. I probably won't see much of the performance. Just watching the concert this year I had trouble keeping it together.

When I was diagnosed with cancer, I wasn't expected to live long enough to see my daughter play a final concert in her grade school orchestra. Or her junior high orchestra. Seeing the balloon on the chair of a graduating senior was at the time I was diagnosed a future beyond my comprehension.

I know now life has no guarantees and that none of us are promised tomorrow, but I am ever so grateful for every landmark I experience in my kids lives now. Seeing a balloon on a chair next year will fill me with a gratitude I won't be able to contain.

It's unbelieveable. I've been here for 6 years of tomorrows in my kids lives.

I am blessed.

Friday, May 11, 2007

Time

Funny, cancer changes your whole perspective of time. Some dates are imprinted on my brain now. Date of my diagnosis- March 29, 2001. Date of cytoreduction surgery-May 16, 2001. Date of my last IV chemo-January 22, 2002.

Before cancer I assumed I'd retire and contemplate death maybe in my 80s after I'd finished my life's work. No more. I don't plan far into the future. It shows up in small ways all the time. I bought a water heater today. Did I want the 6 or 12 year warranty, they asked? Did I want to pay more for a water heater that twelve years from now was more likely to function? Who contemplates a future 12 years away, especially the future of something as insignificant as a water heater? The idea was as ludicrous to me as contemplating prepaying insurance on my house for 500 years. I bought the water heater with the minimum warranty.

I now sometimes accidentally start writing the date of the new year BEFORE January 1st, I never did that before cancer. In all the years before cancer I dated checks with the prior year for about a month. Not any more.

I no longer take the future for granted, at least not the future in this world. Six years later, I still live one day at a time. I think short term. It gets in the way sometimes...making future commitments is really difficult sometimes.

Cancer forever alters your perception of time. You never take the future for granted again.

Tuesday, May 8, 2007

Guilt

I was thinking about my last post and my guilt in regards to having been a smoker. I've found in my connections with other cancer survivors that many of us feel guilt. Some because they didn't eat enough vegetables or didn't exercise enough or because they weighed too much. They didn't eat organic food, they didn't drink bottled water. We feel we were somehow responsible.

We look for the reason why, what did we do wrong?

The number one cause of lung cancer is smoking, but in one study I read that only about 10% of smokers go on to develop lung cancer, 90% don't. Not fair to 10% of the of smokers. Kids get cancer, athletes get cancer. Bad things happen to good people. I'm a nurse, I see bad things happen to good people all the time. And we all fail in some area. Some take great care of their bodies, but poor care of their relationships. Who is to say which is better in the long run. I never asked "why me", but I did wonder sometimes about others who abused their bodies AND were just plain mean into old age. Why did they not get cancer?

In the end, guilt serves no purpose except to motivate, I guess. Guilt in part motivated me to quit smoking. It motivated me to help raise the tobacco tax to maybe help some kids avoid the addiction. Guilt motivates others to eat better, take better care of themselves. Maybe my survivor guilt helps motivate me to remain in the cancer community and to try to help others struggling with the diagnosis.

So maybe guilt serves some good purposes, but what we really need is forgiveness. We need to forgive ourselves and move on.

Thursday, May 3, 2007

Cigarette Tax

In Indiana legislation recently went into effect increasing the tax on cigarettes 44 cents per pack. I actually was part of a group that lobbied for the tax increase with the American Cancer Society, though we'd requested a $1 per pack increase. I actually went to my state capitol and spoke to my state legislators.

They say that cost is the biggest deterrent to kids acquiring the habit. I'm sure that's true. My teenage kids would have trouble parting with the $5 or more a pack in some states. I don't want my kids to ever smoke. They say now that 30% of all cancers are smoking related. Smoking is related to more than just lung cancer. More cancers get added to the list all of the time; pancreatic, colon, bladder, kidney... I don't want my kids to ever have a cancer diagnosis.

Maybe my own cancer was a result of my former smoking habit.

Yes, I smoked, for many years. I started smoking when I was 15. And for a long while I lived with the guilt of knowing that maybe I caused my own cancer. Maybe I was responsible for all of the grief (and expense) my diagnosis caused my husband, kids, friends and extended family. I quit almost 5 years ago, but remember, I'm a 6 year survivor. I smoked for a year after my diagnosis, and hated that I was so addicted that I couldn't quit even as I fought for my life. I'm ashamed to admit that here. I've read that only 50% of cancer patients who smoke give up the habit. Go figure.

Smoking truly is an addiction, nothing more. Nothing about smoking has the physical effect of relieving stress except for the slow deep breaths you take when you take a drag (and the relief from the withdrawal you feel when you aren't smoking). I was so addicted I even rationalized smoking...."chemo, barium and x-rays are carcinogenic, so I'm going to at least choose one of my carcinogens". How is that for twisted logic? I was terrified as I smoked, thinking I was making cancer cells grow, but I failed time after time when I tried to quit.

I did finally quit; cold turkey was the only way for me. I didn't succeed using patches or gum, though I tried them. I'm sure I tried to quit hundreds of times before I succeeded. In hindsight, smoking was much more stressful for me than not smoking. I love the freedom of not being an addict. Part of what helped me quit was the “Freedom From Smoking” online program sponsored buy the American Lung Association:

http://www.lungusa.org/site/apps/kb/home/login.asp?c=dvLUK9O0E&b=38973

I'm grateful that my kids now abhor cigarettes and cigarette smoke. I'm glad in this day and age my teens don’t see smokers as “cool”, they see them as “losers”. I'm glad cigarettes are expensive. I'm glad there are more smoke-free places to protect my kids. My kids want all restaurants and public places to become smoke free- my eldest made me laugh when we went to a restaurant the other day- she said a smoking section in a restaurant was "like a peeing section in a pool". We had smoking rooms in the house and didn't smoke around our kids, but in hindsight, maybe we didn't protect them enough. They say if kids don't start smoking as teens, there is a good chance they will never smoke. We are almost there.

I just don't want my kids to ever have a cancer diagnosis.