On my first-ever website, this was my bio:
“I have lost my right leg, my left earlobe, and my father to cancer. My favorite color is red.”
I felt, back then, that detailing these losses told most of the story of my life. Cancer had taken so much from me.
Now I’ve lost much more to cancer—not from my own body or from the bodies of my immediate family, but from the many friends I’ve known in the ensuing years who have lost parts to this disease or who have died from cancer. There’s something about being a cancer survivor that connects me to others who are struggling with cancer. When acquaintances are diagnosed, they often come to me. Sometimes it’s because I’ve been there and I can share their experiences in the ways that no one else can. Sometimes it’s for insider knowledge—to help them to strategize a treatment. Sometimes it’s to grieve…to talk about what it’s like to lose a part of yourself and go on being “you.”
I don’t really remember anymore what life was like before my cancer. It’s been over 20 years now and my body feels right just the way it is—missing parts and all. Though I can’t say that I’m ‘grateful’ for the experiences that have come my way because of having had this disease, I am happy that it has helped me to reach out to so many people. There is something about being a cancer survivor that allows me to cross bridges of age, gender, race, and to be friends with people of all kinds. I love that part of my life. It feels good.
In every ward that I’ve lived in there are families who are in some stage of a cancer experience. It is a disease that has touched almost every family that I know. I’ll bet that you and everyone reading this post has been impacted by cancer somehow. We probably all have our stories of family members or good friends who have suffered with this disease. It’s odd how cancer ties communities of people together through a network of experience and loss. But it’s also the one gift that can come from such grief.
Having been together for almost half our lives now, it’s interesting to me (in retrospect) how you’ve changed the meaning of your cancer experience over time. You once viewed it as punishment of divine origin, to school you back into the path of righteousness. I’m glad that you’ve replaced that narrative with another, even if it’s less certain.
I think we all struggle to make sense of those things which defy understanding: painful and prolonged disease, the loss of loved ones “before their time”, catastrophic natural disasters, etc.
It’s a shame when people apply too simplistic a meaning (e.g. “you must have done something terrible for God to inflict you this way”, or “God needed him more than you did”)–this seems to trivialize the suffering. I can’t find easy answers for these questions; and maybe that’s okay.
I am a cancer survivor also, right smack in the middle of my treatment for breast cancer. I never thought that cancer would claim a part of me or enter my life. In my family relatives had suffered and died from diabetes and heart disease. Cancer was a total surprise and a pretty good kick in the pants.
We share something – my favorite color is also red. But in other ways, we are different. I have lost only a relatively small piece of flesh, thanks to early discover of the lump in my breast. I don’t miss that piece of tissue. Sure the scar is there, but it is private and my shape is still pretty much as it was. I know I would feel different if a mascestomy had been necessary. The reason I know this is how I have felt about being bald and totally hairless – think very faint eyebrows and only a couple of eye lashes. I do not want anyone to see me without my hair. It has taken courage to let a few people actually see my bald head. Yes, this is temporary but I had almost 36 inches of hair that I was very comfortable putting into buns, braids, and all manner of up-dos. I read that the loss of hair is the hardest thing for many women who have breast cancer. I agree. In the on-line support group I belong to it is the number one topic of discussion.
Still, losing hair is not losing a body part. I struggle to indentify with the women who have lost one or both breasts. Would my self-image be different? I think so, despite what I know about an eternal identity and the true worth of my spirit. The body is so much of our mortal life and breasts are so much of the socialization we experience, the role we claim as mothers, the way we relate to men, and the attractiveness we do or do not think that we possess.
At first I was so shy about telling my bishop and home teachers that I actually had breast cancer. I thought that I would be more comfortable with some other kind of cancer. That feeling wore off quickly. I don’t know if anyone else has been uncomfortable with it or not. I chose not to notice if they were. Besides, since the most obvious change was the loss of hair, I suspect most friends sort of “forgot” that I had breast cancer.
I am still the person I was in some ways, yet now I have a different perspective about many things. I think for me, this journey in the land of cancer has given me much more than it has taken away. I lost the innocent trust that nothing bad would happen to me, that I would never be seriously ill. Now I know bad happens to everyone sooner or later and the thing is to be ready for it. I have learned that my body can sometimes be much stronger than I expected and that I will not always be able to control everything I want to control. This is one of the themes of my life and cancer has only emphasized this reality. I have learned who my real friends are and who are “friends” in name only. There are so many other things I have received, but this is too long and I hope to read the experiences of others.
I am one of the few people whose family or self has not been touched by cancer (yet). My experience with it has come entirely from talking to Jana. And I feel like my eyes have been opened in some ways.
One insight that I found especially enlightening was when you talked about gratitude, Jana. You talked about going to that interfaith meeting where the minister prompted everyone to feel grateful by telling the tale of seeing homeless people, and then feeling grateful for a home; of seeing blind people and being grateful to see; of seeing a person with an amputated leg and being grateful to have two. I remember how you talked about that being like a cup of cold water thrown in your face – to think that people might be looking at you and being grateful to not be like you. Your point that people expressing gratitude should try to be careful about not creating polarities and us/them rhetoric is something that I am trying to always keep in mind . (I’m putting words in your mouth here, Jana, so feel free to tweak what I’m saying.)
Mary, thanks so much for sharing your experience with cancer. I can’t even imagine how hard it would be to stare possible death in the face, not to mention all the painful treatments and side effects. I hope you had a strong network of good friends who really came through for you in your time of need.
Mary:
I agree that losing hair is one of the hardest parts of cancer treatment. I, too, wore a wig almost all the time I was on chemo. I lost all my body hair: no brows, eyelashes or anything. I looked like a ghost–so thin and hairless! I pencilled in my brows and wore dark eyeliner (not sure that helped much, though).
Soon I plan to write more about what it’s like having lost major body parts to cancer and becoming disabled. So you can expect to hear more from me on this subject in the future!
Also, I agree with you that having cancer really teaches you who your friends are. Many of the kids I knew at school shied away from me. Ward members and extended family often felt uncomfortable. But there were others who were always there when I needed them. I am so grateful for them! I remember all of their names even though I no longer know where they are. Someday I hope to find them all and thank them for making a difference in my life.
Jana,
You reach more people than you know. I work with criticially ill children, a portion of whom have cancer. Every once in a while I work with one who is well enough to communicate. And there have been times that I have told them about my good friend Jana; my best friend from college, smart, funny, ambitious, beautiful, who just happened to have have cancer as a little girl, but who is a survivor and continues to glean the best life has to offer. Yes, I’m only passing along a spark of hope, but children need role models, especially of your calibre.
On a lighter note, the other day while roller blading with a friend, I found myself recounting when John (who ran) and I (who roller-skated) did an American Cancer Society run/walk/skate/bike event when you volunteered for the organization back in college. I will never forget how painful it was to rollerskate the back area of Newport (I felt every bump!), and how much I admired you for being proactively involved in ACS.
[…] Posted on June 14, 2008. By Jana This post first ran on March 6, 2006. […]