Blaming Big Medicine

Cancer is a frustrating, awful experience. In a world in which we all strive to be safe (airbags? antilock brakes? deadbolt locks?) and in control (calendars, schedules, savings accounts), cancer shows up and strips us bare. There will be no certainty, it says. You will not be in charge of this process. The course of the disease cannot be predicted--it's impossible even to say that one person's response to Taxol will be the same as another's. My aunt was diagnosed with multiple myeloma and given less than two years to live; thirteen years later, she died having outlasted every treatment the medical team could devise.

So perhaps it's no wonder that so many people seem to channel their fears and frustrations into fury--at the doctors, the drug companies, and the researchers who are trying frantically to come up with new and better weapons in the fight against cancer. A couple of weeks ago, I noted with interest the New York Times story about lymph node treatment. In short, researchers have found that about 20% of women with breast cancer--in particular, those at stage T1 or T2, with evidence of metastasis to the nodes but not palpable enlargements, and whose treatment includes lumpectomy with radiation and possibly chemotherapy--do not need to have further surgery to remove lymph nodes. This lymph node surgery is invasive and risky--my anecdotal impression is that many women who have undergone the extensive surgery end up with complications such as lymphedema. I was lucky that my cancer had not spread to my lymph nodes, but if it had, it would be a huge relief to know that my survival and risk of recurrence would not depend on having my armpit scraped clean.

So, an informative article about an interesting new development. But the comments to the article really drew my eye. I found them--let's say, less than rational. I'd like to highlight some of them here, with my responses.

hey geniuses, what about the other 80%? and what does that tell you? you can make statistics say whatever the hell you want them to.

 Well, the other 80% don't get the luxury of skipping lymph node surgery. But that does not make the findings suspect, nor does it indicate "lying with statistics." Breast cancer research is moving in the direction of more individualized treatment--approaches customized to the individual person and her disease profile. So, it's not a failure to find a treatment applicable to 20%. It's progress for 1/5 of all patients. And we have to keep working for the rest.

I wish to hell medicine would make up its freakin' mind about all this. My theory is no one knows anything about anything! It's all guess work.

Not necessarily. Science moves forward, but in small steps. Plus, studies can conflict. Scientists look at all of the existing knowledge, and weigh study results against the real risks and opportunities for patients, and all of this informs their recommendations. Changing recommendations reflects progress, not guesswork.

And, finally--

the other 80% end up like my mother in law: dead within five years of a metastatic diagnosis because nodes were not removed and tested when the inital [sic] tumor removal occured.

First of all, this is very sad and my heart goes out to the commenter and her mother-in-law. At the same time, the comment implies (well, states flat out) that the death occurred because nodes were not removed or tested. Cancer is a complex, nasty, and often unpredictable disease. Many women whose nodes are removed, tested, or treated still die, tragically. A cancer death cannot be reduced to this one variable. It's tempting to look back at what wasn't done, what might have been--but even hindsight can't tell us how to save someone. 

In short: faced with the dangers and uncertainties of cancer, it's natural to look around for someone to blame, and for a tangible target for our anger. But lashing out at the research studies and scientists on whom we rely for better treatments and longer lives--that seems misguided. Let's all be mad as hell at cancer. But let's support cancer research, be intelligent consumers of research, and figure out how to make the research help us live longer.

What would I do?

Another great cancer-oriented article from the NY Times today. This one tells the story of a woman who was diagnosed with breast cancer at 31, was successfully treated, completed her medical degree and entered the field of palliative care, and then had a recurrence and severe metastasis of her cancer. She found herself resisting the same palliative approach she'd been advocating, and fought hard--there's no other phrase for it--until it killed her at 41. Ten years, end to end. She was not ready to give up and not ready to die--at 41, who would be? At 50 or 60, who is, really? In any case, it's yet another poignant and thoughtful piece from the Times, which seems to have a whole "cancer beat" alongside politics and world affairs.

Things are good with me. I passed the 4-year mark with clear bloodwork, mammogram, and physical exam. I have fully regained my strength and my life, and to a large extent I have recovered a sense of confidence that my life will continue for the foreseeable future--or, at least, not be cut short by cancer. Who knows, but the gnawing fear subsides a bit, and it becomes easier to live both for today and toward a future, and that's a nice thing. Of course, as the article illustrates, neither the future nor one's attitude toward it is very predictable.

Quick link

It's been forever since I've posted, I know. I have a long, long post weaving itself in my head, and sometime soon I'll actually write it down and post it. I'm still here, still doing well, no recurrence (knock wood! next checkup soon) and getting on with my post-cancer life.

But I just had to post this today. I saw a reference to it in the letters section of the NY Times. Many news media this week covered a story about cancer patients' not participating in research studies, and how that contributes to a slow pace in treatment discoveries and advances. There's been some good discussion of why this happens, but one letter-writer pointed out that a major impediment to participating in clinical trials is that they may be geographically distant from the patient, and it can be expensive and risky to travel to them.

Well, I had never before today realized that there's a group that arranges free flights on corporate jets for patients undergoing cancer treatment. It's called Corporate Angel Network, and its website is here. Of all the great "free" things I've heard of for cancer patients, this one makes me the happiest. I hope the cancer-blogging network can get the word around comprehensively, so that travel distance doesn't have to slow down advances in cancer treatment!

"Good" cancers

I've been gone for a long time. Mostly that is because of work--I've had a highly absorbing course to plan and then start teaching. I'm still in the midst of it, and it leaves little time for anything else. A little less, it's because I reached a point of feeling exhausted by the constant recognition of being a cancer survivor. It'll probably never be possible to see cancer as something that happened in the past, like that one embarrassing drunken night in college with my guy friend, which the two of us immediately pretended never happened; or the period of my life when I was unable to have an effective argument because I'd lose track of the logical flow of speech. Those things will never happen again. Cancer might.

Anyway, on that topic (somewhat), here's a blog piece that appeared in the NY Times today, by a guy with prostate cancer who rails against the notion of "good" cancer.

And let me just send a shout-out to a loved one who also has prostate cancer, but on top of that is in the hospital recovering from surgery for lung cancer, which most people would decidedly not call a "good" cancer. He is enormously healthy and I think he is as likely as anyone to beat cancer down again. (He had it once before, over 4 years ago, and was treated successfully with surgery--this is a new primary cancer, not a recurrence.) But again, cancer sucks. It just sucks. It keeps hitting all these damn people I care about, and even if they (we) survive, it still takes things away. Months... Years... Lungs... Breasts... And any illusion that any part of life is the smallest bit fair.

I want to end on that angry note, but I can't. I'm also enormously excited and have to acknowledge the election of Barack Obama. This is a man whose mother and grandmother both died of cancer. He knows the cost. In his infomercial, he said that his mother's death taught him that you have to seize opportunities when they happen, and suggested that that's one reason why he chose to run for President so early. He has a lot of critical priorities and I don't know where cancer falls on his list, but I can't help but feel hope, that this President really understands what a scourge cancer is, and how unfair and brutal it is, and how we absolutely must defeat it. Now that's a war I can get behind.

Almost unimaginable

When I was first diagnosed, my oncologist talked seriously with Noah and me about whether we wanted to have children. Chemo often puts women around my age--late 30s and up--into early menopause. Sometimes it's temporary, just during treatment (as it turned out in my case); other times, it just keeps going after treatment.

We were advised to consider carefully whether we wanted to pursue egg harvesting or in vitro before I started chemo. It took about 2 seconds to decide that no, if the dice rolled that way, we were perfectly willing to adopt one of the many children out there needing a family and a better life; let's get going and cure me now, thank you.

As easy as that decision was for me, I'm sure it's quite tough for many women. And it seems unimaginably agonizing to think of learning you have breast cancer while you're already pregnant. The NY Times' latest thought-provoking breast cancer article is a long piece about the current state of treatment. It's really amazing--it appears that pregnant mothers can receive chemo through most of pregnancy without apparent harm to the developing child. Nonetheless, the depiction of new mothers--having just given birth, dealing with a newborn, and now going through more rounds of chemo--just makes me shudder. It is hard to go through cancer treatment. I stand and salute the women who do it with that much more at stake, and that much more to make it tough!

Exercise, again

And again, the NY Times. Today, an article about the benefits of exercise for those undergoing treatment.

Who I was/Who I am

The NY Times, in its ongoing fabulousness, has an article today about coping with identity changes, and I love it.

Two quotes in particular stand out. First,

A critical illness is like a great permission, an authorization or absolving. It’s all right for a threatened man to be romantic, even crazy, if he feels like it. All your life you think you have to hold back your craziness, but when you’re sick you can let it go in all its garish colors.

This is so true. And once the critical illness is over, the permission fades. You were allowed to deviate, given lots of leeway, even permitted to say NO to things and to live your life to maximize health rather than busy-ness. But as time passes, people stop thinking that you are delicate and must be handled with care; they start thinking it's time you stopped whining and started being like everyone else again.

The other quote I loved:

I wanted to be someone, a recognizable personality, a full-blooded, memorable human being, and not just a cancer patient. I had already lost the person I used to be, that healthy, energetic 45-year-old woman. I wasn’t capable of losing more. Other friends had their own spins on claiming individuality in the cancer world.

I alluded to this in an early blog post. At first, I wanted so much to maintain my professional identity, to be the smart, strong person who just happens to be going through cancer treatment. I didn't want to be like those grey, wispy, shadowed people sitting in the waiting room in their headscarfs and their wheelchairs. When I had surgery and couldn't wash my own hair, it was hard to accept help because it just drove home my incapability. When I couldn't walk outside for a full half hour at a time, I felt the loss of my physicality more than I had ever felt its presence.

What the writer doesn't say, and what happened too slowly for me to watch, is that you really can go back to something like your old life, and leave that self-loss behind; but it's almost like a projection of your old life, one rendered in all the same colors and moving in the same patterns, but against a different screen, parallel to the old but never quite touching.

I actually have to fight with myself not to just go the straight denial route, and turn my back on the truth that I had cancer, and ignore anything to do with cancer. Someone close in my social circle just started chemo (her first treatment was on the 2-year anniversary of my last treatment). It is surprisingly hard for me to see her go through this, in part because I just want to deny, deny, deny; and, unexpectedly, her reality becomes a constant undercurrent for me, reminding me of what I experienced and what I am as a result.

Good eats

Much silence from me lately! This reflects both good news (trip to Europe, getting work done, playing lots of volleyball) and not so good news (I'm feeling resentful about my involuntary association with the world of cancer, partly because of its effect on my own life, and partly because someone very close in my social circle--and younger than me--has just been diagnosed and is being dragged into this world herself).

I break my silence with little to say about my own life. But the NY Times strikes again with another great piece on nutrition. This is just a general "what you should eat" article, but most of these items are on my nutritional oncologist's list of things to eat every day.

Bon appetit!

Living (off topic, but not really)

I am not a traditionally religious person at all, but this story of a street preacher in Oakland just blows me away. One thing that cancer taught me was the importance of living fully and authentically, with courage, following the deepest part of your soul. I also feel that there must be some meaning, some way that we build something that will outlive us--whether through creative works, or academic articles (me), or through the impacts we can have on others. Well, this guy is like the poster child. I just find it very moving.

Then there's this piece from the NY Times, which also moved me on several levels. First, it's an echo of The Wire, my favorite TV show, which depicts the complexities and heartbreaking realities of the life of a modern city. The show and the article both focus on Baltimore, on inner-city kids who don't have much of a future to hope for and about whom most of the world doesn't really care. The article, which is about a lottery for inner-city kids to get into a new prep school, reminded me also of cancer--of that lottery of luck in which your wheel spins agonizingly and stops, the black ball dropping into that slot and a year of surgery and chemo and radiation and weakness and hair loss becoming your prize. Such random fates distinguish the blessed from the forgotten. I got cancer, and lost that particular lottery; generally, in life, I'm quite blessed, and have the kinds of fortune that others might dream about. There's nothing at all fair about any of it, and nothing understandable.

To fight cancer, we have to fight a lot of other things...

...like our government's refusal to protect our individual lives, in favor of protecting corporate profits.

I know a lot of readers visit this blog looking for support and perspective on dealing with breast cancer, and I don't mean to offend anyone's political sensibilities. But this is germane. I struggle to maintain my survivorship by trying to control whatever I can control: to eat healthy food (not polluted, not full of chemicals, and grown to maximize nutrient value); to exercise a lot; to give my body both motion and rest, challenge and care; and to stay balanced emotionally.

And then, as much as we try to do these things, we live in a world that could either support our efforts, or be a hostile environment against which we have to fight. And when our White House decides it will lean on the agency charged with helping us have a healthy world, urging it away from the strongest and most protective standards (for whatever reason, but especially for the benefit of corporations, which do not get cancer but do make big bucks)--when this happens, I'm really disgusted and angry.