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.

Monday, November 26, 2007

Thanksgiving

I guess I should have posted this when it was the holiday, but I worked the holiday and weekend so didn't think of posting then. I also went to see the Chicago Symphony Orchestra directed by John Williams with my daughter followed by a night in a Chicago hotel after the holiday, so it wasn't all work, it was also some play that delayed this post!

I am thankful for so many things. I'm thankful for the family times I am able to share with my husband and kids. I'm thankful I am here to watch my kids grow up. I am thankful for my health. I am very, very thankful to be an almost 7 year survivor of what some call "the kiss of death", signet ring appendiceal cancer.

But what I am especially grateful for is the opportunity and purpose my survival has offered me. I struggled as a survivor for a long time not so much with survivor guilt as with an obsessive need to find purpose in my survial. I drove my best friend and a few others nuts when I incessantly talked about needing to find purpose in my life.

When I finally made the decision to muddle through creating a web site, I never knew, I never thought for a moment of the gifts I would be given in return, the people I would meet as a result. I never anticipated the purpose I would realize as a result of my having had cancer. So many of you who have contacted me have inspired me greatly and given my life a new meaning. I'm sure this sounds strange to some, but I wouldn't go back to my before cancer life if I could now. My life is so much richer now than it was before cancer.

I thank all of you I've met while on this journey, you've all enriched my life and given meaning to what was once a very tough journey.

Tuesday, November 20, 2007

Fear

Having a cancer diagnosis and living with it for a long time puts a new twist on fear. I have new fears I didn't have before, and I no longer fear things that used to incite me to trembling.

I have no fear of flying at all. A little turbulence is fine. Now I know we'll all die sometime, and going down in a plane crash doesn't seem so bad when you consider the alternatives. Death is just gate from this life to the next; a shorter, less painful transition would be better. With a plane crash, there is a much less lengthy period of time in which you contemplate your demise. A few seconds of terror and then it's over before you can even feel any pain. I don't fear massive heart attacks for the same reason.

Stage fright. I no longer have stage fright. I used to be nervous about playing piano publicly, I was also a little nervous about public speaking. No more. When you first get a cancer diagnosis and you really have something to fear, all other fears pale in comparison. What's the worst that can happen playing piano publicly? Forget a note? Have to start a song over? Someone might hiss or boo?

I don't worry about meeting a bear when I backpack, though I do worry a bit about getting lost. My sense of direction is really poor and I don't want to have to hike hungry while I try to find my way back to a trailhead.

I don't worry so much about people I love dying, they'll just go on ahead of me, I'll catch up with them later. I view life from an eternal perspective now...though I can't imagine not being able to share my life with my husband and kids.

But I have new fears I didn't have before. Fear of living a purposeless and meaningless life. Fear of not making a difference in the time I am allowed on this earth. Fear of wasting time. Fear of not appreciating the gifts I've been given, of not appreciating the beauty that surrounds me, of not appreciating enough the people who have come into my life from so many different places. I don't really care how long I'm on this earth anymore, though I'd like to be able to finish raising my kids to adulthood (I'm almost there!). I just care that I use my time and my life here well, that I make a difference.

Tuesday, November 13, 2007

Grieving the loss of "Normal"

In 1969 Elizabeth Kubler-Ross published her classic book, "On Death and Dying". I was required to read it as a class assignment in nursing school. The book outlined the five stages of grief and loss of someone who is dying. In later years, these stages of grief and loss became known to be associated with other types of loss.

I talk to so many who tell me that the day of their cancer diagnosis was the day their "normal" life ended. I've recognized these same stages as we grieve the loss of our "normal" lives after a cancer diagnosis. I think many of us have gone through these stages as we've relinquished our before-cancer normal lives. I know I did.

Denial and isolation: "This is not happening to me." We feel detached, we can't assimilate the reality that we are now cancer patients. It was so unreal the first time I sat in an oncologist's waiting room knowing that though I felt great, I was now a "cancer patient". I was a cancer patient just like the bald person across the room. Just like the very thin and sick-looking person across the room. I was one of them, a cancer patient.

Anger: "How dare God do this to me." I never felt "Why me?", but I was angry sometimes that people I knew who abused their bodies, were abusive to other people and who were just plain mean lived to old age without having any severe illness threaten their lives. And I knew good, faithful and God-honoring people who died of cancer and abandoned their children. I saw kids with cancer. I was angry at the unfairness of it all, the injustice.

Bargaining: I'll eat right, I'll do chemotherapy, I'll do surgery, I'll quit smoking, I'll exercise...just let me live long enough to raise my kids. I just want to see them graduate from high school.

Depression: I am so sad, I feel horrible at the pain and worry I am causing those I love, I'm afraid of the future, I'm afraid of tomorrow. I'm so sad.

Acceptance: I'm here now, at acceptance, but it was a very long and hard road. And I guess since I've almost achieved what I'd "bargained" for, maybe it's easier for me than for others. I've been in the cancer community for over 6 years now. It can be a place of brutal reality, of fear, of sadness, of anxiety. But I truly accept now that there is a purpose for all things, even the bad things. I accept that every day is a gift and that none of us are promised tomorrow. I accept that we need to make today count. I accept that God's answer is "no" to many prayers. I accept that there is much I don't and can't know from my perspective in this here and now.

But I feel with certainty that this here and now is not all that there is. I know there is much more beyond this life. I accept my life as tentative in this realm, but I know this is not the only realm. I accept all of the grief and goodness this life has to offer, but I anticipate another reality after this one where we are whole, where we can understand, where everything makes sense, where there is no grief. And now I very much look forward to that reality. For me that is the greater hope...greater than the hope of surviving my cancer.

Thursday, November 1, 2007

Hope

Many of us diagnosed with appendix cancer find hope to be very illusive, at least at first. There's not a lot of disease information available, and many of the published survival statistics aren't great.

Cancer for years was a word associated always with death. Now, though, there are many survivors, 10.1 million in the USA this year.

I smile as many times I am asked what chemotherapy I received. Interesting thing is that the best chemotherapy I received had been approved by the FDA only months prior to my being diagnosed....it was kind of my great white hope. Now it's old news and a second line chemotherapy for our disease, it was replaced by something better in 2004 (Oxaliplatin). Also available now that hadn't been approved when I was diagnosed are the anti-angiogenisis drugs like Avastin.

I just read a list of new drug therapies approved for use in the treatment of cancer in the past 10 years and quit counting when I hit 100. And those are just chemotherapy drugs. Research is ongoing into immunotherapy and to fighting cancer on so many other different fronts.

I have been a nurse since 1982, and have seen so much change in medicine.

In the early 80s when we dealt with AIDs patients and not much was known about the disease except that it was universally and rapidly fatal, we dressed in isolation "moon suits" as we called them when entering an AIDs patient's room. Now AIDs is treated as a chronic disease and we use only routine precautions with body fluids. I'd hug an AIDs patient now without thinking twice. AIDs is no longer a death sentence with current treatment.

I spend a lot of time working with the elderly population, and an elderly woman told me that when she was a child people wouldn't walk on your side of the street if your child had scarlet fever. Both of my children have had scarlett fever. They returned to school after 24 hours on antibiotics, just another strep infection. But cemeteries are filled with the gravestones of children who died of infectious diseases before childhood vaccinations and antibiotics were used. Amazingly, the antibiotics we so take for granted weren't available before 1940. Polio vaccines only became available in 1952.

Read this article, from Reader's Digest in 2005, we are making great strides in cancer treatment: Winning the War on Cancer
Medicine changes all of the time. I communicated with a woman who was diagnosed with cancer, had a recurrence and went through the whole thing again, she is now a 13 year survivor. Even a recurrence may not be a death sentence. I know of several who have not been cured of cancer but who have dealt with cancer as a chronic disease for many years while they've lived full lives, in some cases for decades.

My very favorite author was a biologist and physician, Lewis Thomas. At one point in his life he was the president of Sloan Kettering Cancer Center. As a child in the early 1920s he followed his physician father as he made his rounds. Even in the 1920s and 30s he said the most his father could do was diagnose, prognose and prescibe medications that were mostly alcohol or narcotic based... he could only tell you what illness you had, how long you'd be sick (or if you'd likely die) and make you more comfortable as you hoped to recover on your own with the help of chicken soup. He really couldn't offer treatment or cure for medical illnesses.

Look at us now, less than 100 years later. As states the title of Lewis Thomas' book, western medicine is "The Youngest Science". We've come a long way in a short time.

I think one day we'll see a cure for cancer. Maybe soon.