Archive for October, 2015

posted by Amy on Oct 31

I decided I couldn’t let “Pinktober” go by without commenting.

First, I got my scan results yesterday. This scan unambiguously shows significant improvement. In fact, most of the cancer is gone, and what’s left is smaller, less dense, and less active. I’ve had a lot of scans, and the week I get one is always tough, especially the time between having it done and finding out what it shows. The first scan, almost four years ago, was great. Having such a positive result right out of the gate made me hope I might be one of the lucky few who get a permanent remission. That hope was dashed with the next scan, and I had to learn to like phrases like “stable” and “no new lesions.” But I’ve been lucky. Even the scans with mixed results usually also showed no new lesions, and I decided that was my personal criterion for calling them “stable.” My particular breast cancer subtype is normally very aggressive. Before targeted treatments were developed for it, it was “the bad kind.” Now, at least in my case, it’s pretty lazy and slow-moving. If a scan is “stable” and I have a decent quality of life, then I can live with it.

I’m going to stay on this regimen for three more months or until the side effects become intolerable. I got another treatment yesterday, and I don’t feel too bad. Knowing it’s working makes it much easier to conclude that the side effects are worth it.

But it’s “Breast Cancer Awareness Month,” and I have opinions. One aspect of it that doesn’t get discussed much is how it dwarfs other cancers. Did you know September is Ovarian Cancer Awareness month, and the ribbon color is teal? Not many people do.

The whole idea that we’re going to beat cancer with “awareness” is ridiculous. A few years ago Nancy Brinker, who was the CEO of the Susan B. Komen Foundation, the biggest of the “Big Pink” organizations, said she didn’t think the cure for breast cancer would come from a laboratory. That’s so patently ridiculous it doesn’t even require a response. Yet she has a big megaphone, and people listen to her. People whose lives are marred by other types of cancer feel left out. I don’t remember the source, but I once ran across someone complaining that she wished she had breast cancer, because it’s pink and sexy and popular. Thanks to Big Pink, breast cancer “survivors” get all the attention. Also thanks to Big Pink, people think we’re winning the “war” on this kind of cancer. You hear statistics about five-year survival rates in excess of 90%. That’s true but completely irrelevant. That’s because we’re spending billions of dollars screening millions of healthy women and finding it sooner. Breast cancer can come back in 6, 10, even 20 or more years, no matter how early it was detected and treated, and when it comes back it’s usually stage iv, which is incurable and fatal. People even confuse mammograms with “prevention.” Again, just think about that. It’s stupid.

We’re going to beat cancer–all kinds of cancer–with scientific research. The US is in the throes of forty years of anti-government ideology, where supposedly the government can’t do anything right and the magic market will fix everything. The budget for the National Cancer Institute hasn’t been increased in 11 years, which means it’s actually shrinking. Yet it was NCI that found an anti-cancer agent they named Taxol, which used to be made from the bark of the Pacific Yew tree. It’s now called Paclitaxel, and the original form of the drug was given the “popular” name of Taxol. Abraxane, which is Paclitaxel in a different suspension, in combination with two targeted therapies, is the drug that’s beating back my cancer right now. “Private” industry (and our for-profit health care system) has made billions of dollars on a discovery that we, the people initially made. There are many, many other examples, from every sector of the economy. The people who keep selling the idea that “big government” is messing everything up are lying. Government is how people collectively deal with issues–such as public health–that affect all of us and can’t be effectively or efficiently managed with private effort.

I’ll venture a guess that every single family in this country has lost a loved one to some kind of cancer. With a few notable exceptions, we have not yet won Nixon’s “war on cancer.” Instead of entering races or buying color-coded stuff or going for long walks, we should be putting more money into research, both individually and collectively. We spend under $5 billion per year on the NCI, about $15 per person. That’s ridiculous.

Finally, tomorrow is All Saints Day. In my religious tradition, it’s a time to recognize the “saints” in our lives, living or no longer with us. I don’t have a very detailed idea of what happens to us after death, but I think God is Love, and love never dies. Even when I thought I didn’t believe in God at all, I noticed what the Celts called “thin places,” where the boundary between our world and the next seems more permeable than usual. And, however you explain it or whatever you call it, loving beings–saints–make enduring, life-giving marks on those around them. Tonight I’m going to visualize all the loving, nurturing, kind souls I’ve known (including my dogs. . . .) and thank them for being.


posted by Amy on Oct 18

I had chemo 10 days ago. Today was the first day I felt “normal:” not too many side effects, optimistic, energetic, able to imagine actually accomplishing something. It was a good day. And I got some things done that have been hanging over my head for some time.

I get chemo every 21 days. Even if the next 11 or 12 days are high-energy, feel-good days, that still means nearly half of the time I’m operating at no better than 50% of what used to be normal.

I’ve been continuously undergoing cancer treatment since I was diagnosed in May of 2011, but not all treatments are equal. The one I’m on now is hard for me. I’m doing it in hopes of a payoff. I hope it will knock the cancer back to a level where I can maintain control with two antibody drugs that I tolerate much more easily. It’s kind of a “tough love” ploy. I want the cancer to know who’s boss. But maybe that’s what the cancer wants too. It’ll be interesting to see which of us is right. I’ll get a scan in 10 days and find out a couple of days later.

I am not “fighting” cancer. I’m trying to find some degree of mutual coexistence. Obviously, I would prefer for it to go away and leave me alone, and let me have a normal lifespan. But my mom died (in an accident) at the age of 50 and my dad died four years later at the age of 53, so what’s a normal lifespan? I’m 61. Every year that I manage to stay alive takes me just a bit beyond “too young to die.” Still, I have things I want to get done first. That PhD, for one thing. And you can bet that if I do manage to stay alive and jump through all the hoops I will absolutely send out a press release. Thank you, Boston University School of Theology, for giving me this opportunity. We’re both going to get a lot of positive attention if I manage to pull it off.

I really, really hope the scan shows a good response, because the last three months have been among the toughest since I was diagnosed. Pretty much everything has been hard, and chemo is a big contributor to the difficulty. I am going all in for a minor miracle. I realize it’s Quixotic. But really, what have I got to lose?



posted by Amy on Oct 16

I’ve been trying all week to do some work for my research fellowship. I’m supposed to contact potential funders about helping study leadership in women-led and “non-dominant” Protestant congregations. I feel strongly that this is a worthwhile project and that we have designed it well. I spent all last year wading through leadership studies. Very few say anything about the identities of the people and groups being studied. Most seem to assume that there is a “generic” human being and that “leadership” is something “objective.” Of course, this “generic” human is a straight white man. Our study recognizes that leadership happens in all human enterprises, and that a religious organization, especially in a minority, immigrant, under-resourced, or non-heterosexual community probably differs substantially from a business enterprise. It’s important to study how leadership takes place in “marginal” communities among “non-dominant” groups. I believe that with all my heart, and I’m trying to frame these ideas in bright, punchy ways that clearly fit into the missions of the foundations we’ve decided to approach.

But I’m having trouble getting these proposals done. One reason for that is, despite a year of intense study, I don’t think I know nearly enough about this field. Another reason is fear of failure. This is very important to my boss, and I don’t want to screw it up.

The other reason is it’s October.

I used to love October, especially in Denver. The light is beautiful. The sky is beautiful. The days are warm and the nights are cool. But my father died unexpectedly from a massive heart attack on October 16, 1980. He had just moved back to Denver that year, and we had just started rebuilding our relationship. He attended my swearing-in as a lawyer in April of that year. That was the last time I saw him.

Then I got metastatic breast cancer and learned to dread “Breast Cancer Awareness Month.” I’ve talked about that before. Unfortunately, things haven’t gotten a lot better. There’s a new book–by a breast surgeon no less–that claims breast cancer has a 90% cure rate. Other recent articles and publications say the same thing. That’s an old trick, and it’s highly misleading. The five year survival rate may be 90% or even higher, but that statistic is meaningless. Breast cancer can recur five, ten, fifteen or more years after the initial diagnosis, and that happens to around 30% of people whose breast cancer is diagnosed and treated at an early stage. In addition, up to 10% of breast cancer cases are stage 4 at diagnosis. No matter how you get there–via recurrence or from the get-go, stage 4 breast cancer is incurable. Each case is different, but half the people with a stage 4 breast cancer diagnosis are dead within 33 months, and only one-fifth are still alive five years out.  (This is better than many other cancers. I’ll grant that. But it ain’t a pretty pink success story either.)

I try not to let that get to me. I try to live in the moment, seize the day, focus on what I can do and not worry about what I can’t. But I have gone from someone who hardly ever got sick and who didn’t even have a “preferred pharmacy” to feeling at least a little unwell for some part of almost every day, taking multiple drugs to counteract the side effects of the drugs that are keeping me alive, and having plans derailed by fatigue, nausea, pain, or some combination. Usually I can tough it out. Usually it’s still not all that bad. But sometimes it gets to me.

October is still beautiful, but it also reminds me that winter is coming.



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