Sunday, June 25, 2006

Just try a little

I've been thinking a lot about the way people who have lived through a profound experience don't feel that anyone else can understand it. Child birth, disease, war, violent attack, whatever.

The thought sharpened for me this week when a friend, a new mother, was talking to me about someone else she knew that she wouldn't see again because, "She can't understand, she's never been married, she's never had a kid." And, well, me neither. My friend didn't mean to hurt my feelings and she wasn't thinking about me either, my role in her life is different than the person in question. Still, it felt awful.

It feels awful every time someone says it. She's not the only person who does this, tons of people do that to their single and/or child free friends all the time.

I'm not blameless, I don't want to imply that. I have a hard time listening to people talk about the 9/11 attacks if they didn't live in New York at or before that time.

The deal is that it's a feeling, so no one can really be blamed for feeling a certain way. We can, maybe, be blamed for not trying to explain our feelings to someone else. There are things about child rearing that I may never be able to understand (just get me started on infertility treatment, I'm sure to say something regrettable) but I get a lot more of it than I think I often get credit for.

I've been watching Band of Brothers courtesy of Media Guy's boxed set. I admire the way these gentlemen are explaining not only the facts of where they went and what happened to them there but how they feel about it now and how they felt about it then. Isn't that what we ought to do? In understanding are we not able to move toward repeating the same mistakes?

This seems a natural way to introduce something I've been wanting to write about for a while now. There was a writer on the internet named Jessica. I came to her blog quite late. I jumped there from a link on someone's infertility blog. The sketch of the story is that she was undergoing infertility treatment and was diagnosed with ovarian cancer. I read with interest as Jessica wrote serious essays about slowly letting go her dreams of having a child and grasping the seriousness of her disease. She also wrote poems and songs about the indignities and frustrations of the disease and her treatment. Not long after I began reading the posts dwindled.

On May 12th Jessica died.

Her family, in accordance with her wishes, is keeping the blog up through July 15th and then will close it permanently. I have corresponded briefly with her husband who allowed me to link to the blog and to quote a particular article. He is a lovely man and I am sorry for his loss and grateful for his generosity.

Read the whole thing, go quickly, July 15th isn't far away. The post I want to talk about is here. Go read it, then come back.

The post, Reflections on a Yellow Jersey, talks about the practice in our society of likening cancer patients to sports figures or, more usually, to warriors. "Cancer myth making at its best -- myth making that vastly misleads the American public about the state of cancer research and that portrays a simultaneously reductive and conflicting image of contemporary cancer survivors." She was infuriated by the way this manages to essentially place the blame on patients who don't fight hard enough.

"The fear of cancer lives on. The corridors of hospitals across the world continue to echo with the relieved proclamation "It's not cancer!" while at the same time countless numbers of those chorusing this refrain unquestioningly suspect that with the kind of progress touted by reports like CBS's Sunday Morning, most people experience cancer as a chronic illness, and all it takes to do so, or to beat it, is a Lance Armstrong-like will to live."

This is, as you know if you read the article before you finished this piece, a fallacy. The same number of people are dying today of cancer who have in the past. Even when those numbers are massaged to account for changes in the population. The actuality is that there has been advance in treatment but not in cure. There is still no cure and the treatment works well on some kinds of cancer and not on others.

I know rather a lot of people who have or had cancer. MamaKizz, Mrs. X, Audio Girl, Heaterly, Mrs. Bricklayer, Theresa, ChemE's mom, a number of MamKizz's neighbors, Grammy Charlene, Grampa John. If I sat here long enough I could think of many more. I don't claim to know everything there is to know about the process of treatment but I do feel safe making a blanket statement that people do not want to advocate for a cure or make political statements while they are being treated. It takes all your mental and physical powers to make the decisions and navigate the treatments and continue whatever parts of your "normal" life still require your attention. So, as I've probably said before, it makes sense that testicular cancer, breast cancer, lymphoma and prostate cancer have large and vocal advocacy groups. A large enough number of patients with cancer in those areas of the body survive and are then able to fight for research money, for awareness.

I believe the information that's coming out that says that cancer treatment is successful on specific types of tumors and that these types of tumors can show up in any part of the body. As it's set up now research money is distributed to people who study specific parts of the body rather than specific types of tumors. It seems to me that needs to change. I certainly hope that, if it does, larger strides can be made in treatment and toward cure.

I'm inclined to stand up and scream, "This is so obvious! Why is no one changing this? Who won't someone fucking well stand up and put a stop to this idiocy?" But I'm smart enough to know that if someone is in a position to stand up and yell something like that it's likely that the person yelling is going to be identified as the person to stand up.

So, I'm standing up, and I'm asking for help. I don't know how to make these changes. I don't know how to focus more energy on the types of tumors that are more likely to appear in the lungs, the ovaries, the uterus, the brain. I don't know how to take the small funds I have to donate and maximize their effect. I don't know who is in a position to make even a small shift in the way that research money is awarded. I'd like to know. And if enough of us stand up and yell I hope we can find out. Even vague notions are welcomed.

I'm sick. I'm sick of seeing people I love die. And you ought to be too. I'll let you know if I find out anything useful. In the meantime I'll just keep on yelling until someone hears me.


  1. Hi Kizz,

    Excellent post. Today I've almost too conveniently, vis a vis yours, cued up a link to the big "future of pharmaceuticals" issue of my magazine that I alluded to earlier this year. It just got printed.

    The issue isn't all about cancer research, but there is a lot. We found that there is, in fact, a real change of direction in research post-genome. They are going after tumor types, as opposed to body parts attacked. There are big-ass problems, however. The basic research infrastructure is completely faulty, according to folks at the National Cancer Institute (part of the National Institutes of Health), because scientists and institutions don't share infomration or communicate failures, both of which are necessary to get any milage from the genome data swamp. Also, some patient activists claim that researchers are motivated by career advancement--getting published is their goal, they say, not getting to cures.

    Not to blogwhore or anything, but the sidebar on my main story--the one about patient activisim--has some good sources on the topic of what's wrong. My main story gets into the flawed research infrastructure, but it also looks at new trends that are very positive. Another article by Stu Borman is a little more technical, but it discusses biomarkers and other tools. Also some positive research trends there.

    My link is to a page on my mag's website from which you can jump to the main features, side bars and some online profiles of patients and researchers.

    Alright. So I blogwhored.~,:^)

    I liked the stuff on you post and links about the culture of cancer and the language and imagery that generates a mythology of disinformation. That is a very difficult thing for patients, families, and others.

    My other problem with Lance Armstrong, by the way, is how he played the family card like a nine pound hammer during and immediately after his fight with cancer, only to dump wifey in order to get his ride pimped by Cheryl Crow. Now that thing's a mess too!

  2. I should mention that my neice died of cancer on something like October 11, 2001. She was the same age that my daughter Emily is now. I learned that Andrea had cancer on the day that we woke up and didn't know whether Bush or Gore won the election. Bad news day. So, it was about a year-long journey into night. My perspective isn't entirely journalistic, I guess is my point. A lot of people have a similar story in their families, given the pervasiveness of the disease.

  3. Anonymous5:11 PM

    I found a good lung cancer advocacy site-Lung Cancer those who might be interested...

  4. Anonymous10:32 PM

    There was a very good documentary on childhood cancer on PBS recently called A Lion in the House. It was actually spread out over 2 nights - 4 hours total. It's not about statistics and facts - it's about what people go through when fighting cancer - and it only scratches the surface, but goes deeper than anything I've seen. 5 children and their families are profiled. One young man lost his life to cancer after a 10 year struggle. This is not a network news piece - only 3 of the 5 kids survive (less than the rate of survival in the US against childhood cancer). I highly recommend this - there's also a website, that seems to have some good links:
    As the last frames of the video tell us, the percentage of children in the US getting cancer is inching slowly up each year, unfortunately. My great-grandmother, her daughter, and that daughter's niece (my mom) all had breast cancer. The only differences are that each generation got it earlier in life and that my mom was the only one to survive. There are more people surviving some cancers, but also a greater percentage of people getting cancer. So hopefully some more effort will also be put on eliminating, or at least reducing, more of the causes of cancer.

  5. Anonymous9:54 AM

    Thanks so much for sharing Jessica's site. She is so articulate! Damn! I wish I could say it like she did. I've instructed my family to omit the "she died after a courageous struggle with" in my obit. I am not a loser to cancer. Hate that metaphor!