Me and a porch post.  More curls than I have ever had in my life.  (But I’ll take it.) Photo by Jesse.

Recently in the New York Times Atul Gawande wrote about end-of-life care and helping people make the most of the time they have left.  Makes sense to me.  Let’s hope the four questions he describes can be a general Rx for doctors everywhere.

If this issue speaks to you at all, go to Breast Cancer Action, learn a bit more about current pink-ribbon madness, and add your name to their letter-writing campaign: all here.

Below are various quotes from the essay “Welcome to Cancerland” by Barbara Ehrenreich to get us ready for “National Breast Cancer Industry Month.”  (Thanks for the link, Dorian!) This was written in 2001, but not much has changed.  Before being guilted into buying pink things, or things with pink ribbons on them (like yogurt), consider the observations and ideas below.

Ehrenreich on why breast cancer is such a big corporate cause:

It is the very blandness of breast cancer, at least in mainstream perceptions, that makes it an attractive object of corporate charity and a way for companies to brand themselves friends of the middle-aged female market. With breast cancer, “there was no concern that you might actually turn off your audience because of the life style or sexual connotations that AIDS has,” Amy Langer, director of the National Alliance of Breast Cancer Organizations, told the New York Times in 1996. “That gives corporations a certain freedom and a certain relief in supporting the cause.” Or as Cindy Pearson, director of the National Women’s Health Network, the organizational progeny of the Women’s Health Movement, puts it more caustically: “Breast cancer provides a way of doing something for women, without being feminist.”

On the normalization of breast cancer as a rite of passage:

The First Year of the Rest of Your Life, a collection of brief narratives with a foreword by Nancy Brinker and a share of the royalties going to the Komen Foundation, is filled with such testimonies to the redemptive powers of the disease: “I can honestly say I am happier now than I have ever been in my life — even before the breast cancer.” “For me, breast cancer has provided a good kick in the rear to get me started rethinking my life.” “I have come out stronger, with a new sense of priorities.”  Never a complaint about lost time, shattered sexual confidence, or the long-term weakening of the arms caused by lymph-node dissection and radiation. What does not destroy you, to paraphrase Nietzsche, makes you a spunkier, more evolved, sort of person.

The effect of this relentless brightsiding is to transform breast cancer into a rite of passage — not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or graying hair. Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalize the disease: the diagnosis may be disastrous, but there are those cunning pink rhinestone angel pins to buy and races to train for. Even the heavy traffic in personal narratives and practical tips, which I found so useful, bears an implicit acceptance of the disease and the current barbarous approaches to its treatment: you can get so busy comparing attractive head scarves that you forget to question a form of treatment that temporarily renders you both bald and immuno-incompetent. Understood as a rite of passage, breast cancer resembles the initiation rites so exhaustively studied by Mircea Eliade: First there is the selection of the initiates — by age in the tribal situation, by mammogram or palpation here. Then come the requisite ordeals — scarification or circumcision within traditional cultures, surgery and chemotherapy for the cancer patient. Finally, the initiate emerges into a new and higher status — an adult and a warrior — or in the case of breast cancer, a “survivor.”

On how breast cancer also functions as a cult or religion:

“Culture” is too weak a word to describe all this. What has grown up around breast cancer in just the last fifteen years more nearly resembles a cult — or, given that it numbers more than two million women, their families, and friends-perhaps we should say a full-fledged religion. The products — teddy bears, pink-ribbon brooches, and so forth — serve as amulets and talismans, comforting the sufferer and providing visible evidence of faith. The personal narratives serve as testimonials and follow the same general arc as the confessional autobiographies required of seventeenth-century Puritans: first there is a crisis, often involving a sudden apprehension of mortality (the diagnosis or, in the old Puritan case, a stem word from on high); then comes a prolonged ordeal (the treatment or, in the religious case, internal struggle with the Devil); and finally, the blessed certainty of salvation, or its breast-cancer equivalent, survivorhood. And like most recognized religions, breast cancer has its great epideictic events, its pilgrimages and mass gatherings where the faithful convene and draw strength from their numbers. These are the annual races for a cure, attracting a total of about a million people at more than eighty sites — 70,000 of them at the largest event, in Washington, D.C., which in recent years has been attended by Dan and Marilyn Quayle and Al and Tipper Gore. Everything comes together at the races: celebrities and corporate sponsors are showcased; products are hawked; talents, like those of the “Swinging, Singing Survivors” from Syracuse, New York, are displayed. It is at the races, too, that the elect confirm their special status. As one participant wrote in the Washington Post:

I have taken my “battle scarred” breasts to the Mall, donned the pink shirt, visor, pink shoelaces, etc. and walked proudly among my fellow veterans of the breast cancer war. In 1995, at the age of 44, I was diagnosed and treated for Stage II breast cancer. The experience continues to redefine my life.

And on races, walks, etc. (Race for the Cure, Relay for Life, and so on):

Feminist breast-cancer activists, who in the early nineties were organizing their own mass outdoor events — demonstrations, not races — to demand increased federal funding for research, tend to keep their distance from these huge, corporate-sponsored, pink gatherings. Ellen Leopold, for example — a member of the Women’s Community Cancer Project in Cambridge and author of A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century — has criticized the races as an inefficient way of raising money. She points out that the Avon Breast Cancer Crusade, which sponsors three-day, sixty-mile walks, spends more than a third of the money raised on overhead and advertising, and Komen may similarly fritter away up to 25 percent of its gross. At least one corporate-charity insider agrees. “It would be much easier and more productive,” says Rob Wilson, an organizer of charitable races for corporate clients, “if people, instead of running or riding, would write out a check to the charity.”

She also points out elsewhere that the races/walks/survivor events place the cultural attention on the survivability of breast cancer and sidestep the many women who die from it. If it’s true that only 5% of breast-cancer research funding goes to research on metastatic disease (per Lisa Bonchek Adams), this might be part of the reason why.

Seems like creativity/making something/working with my hands is something I use to lower my stress level.  This winter Will & I took a metal jewelry-making course.  Although I felt icky from chemo most days I went, it was great fun.  We used the lost-wax casting method to make bronze jewelry and then did some simple metal-working and soldering.  I made some earrings and pendants.

Later in the spring I followed a tiny tendril of interest and ended up with my friend Lisa’s beading supplies for a while.  I’ve made some bead earrings and a necklace and bracelet.  I don’t know what I’m doing, but it’s fun.

I remember back when Jesse was a baby I got this crazy idea to make a quilt out of old clothes and leftover fabric.  Not a crazy quilt, though–a very organized and thoroughly pre-designed one.  Someone I knew from La Leche League in Newtown was a quilter and wanted a project, so she mentored me with the cutting and pinning and did the sewing.  I did the picking of the fabrics, the pairing of the fabrics, and the semi-obsessive considering and laying out of the resulting many squares into a queen-sized quilt.  It was extremely awesome until many of the fabric pieces (which were old, used, well-loved clothes to begin with) fell apart.  But what I’m remembering is not just the great feeling of the Making, but the question a friend of mine asked me when I mentioned I was staying up at night to work on it on the floor of the dining room, after Will & Jesse were asleep and before baby Jesse was scheduled to wake up again once or twice in the night: “You are so busy, you have so much to do.  Why are you doing this too?”  Well, I was doing it to stay sane.  To not just feed and nurse and change and tote and drive and buy and eat and sleep and work, but to Make.

I’ve also needlepointed a bunch of pillow-tops in the last decade or so, all of which have eventually been turned into pillows with the help of various people more skilled than I with a sewing machine.  (Sewing machines and I do not get along.)  Those I do mostly to give my hands an occupation at times I need to sit still and listen: conference presentations, meetings, long conversations, sometimes parts of long labors.  Otherwise I have a hard time focusing.

Since cancer came back into my life I’ve noticed also that I am feeling like putting a bit more energy into my clothes and what exactly I wear, and being more interested in clothing items that express a little more about me, or how I’m feeling that day, than do the perfect pair of jeans.

And of course getting this house designed and built felt like a huge, 3+ year multi-faceted creative act.  At least on the best days.

Some pictures! (scroll way down for all of them, and click for bigger versions if you’re interested)

I think a month is quite long enough to procrastinate about updating my blog.

Let’s see, the initial roadblock to blog-fluidity was the trip we took to the Block Center for Integrative Cancer Treatment in Skokie, Illinois at the very end of July.  The multi-specialist, almost-6-hour visit was full of Stuff to Think About.  We (Eric and myself, later joined by my mom) met with:

• a psychosocial therapy/social worker type person who asked about coping, support, the kids, dealing with emotions, etc.
• a nutritionist who looked at my previous lab results, walked us through the Block Center diet (basically, vegan with lots of whole grains & veggies), and went over suggested supplements and foods to match the lab values that indicate the “terrain” my body is providing for the cancer
• Dr. Udhrain, the oncologist, who was very cheering and provided a bunch of information about treatments and how they do them there
• Dr. Block, the founder, who has been doing this for 30 years and answered some interesting questions in solid ways.

Then I had lots of blood drawn for updated lab work to further customize the eating/supplement advice they gave me (I had a follow-up call with the nutritionist a couple of weeks later).

Sometime in between there, we grabbed plates of food from the lunchtime healthy-cooking demonstration they do every day, and had some tea in the waiting areas that are like living rooms, where the practitioners come find you when they’re ready for you.  Everyone was nice.  It was very boutique-y but professional.  Most of it was covered by insurance.

The upshot of the visit was this:

• Current chemo is a good choice; they would not suggest a change as long as there is no progression of the tumors.  Beyond that, there are many options, and I could come there for the Block Center version of them (involving lots of supportive treatments around the same chemo, and sometimes different administration times of that chemo–chronomodulated chemotherapy, see righthand column).  Or I could just consult with them every 3 or 6 months without switching to their care completely.

• Beyond the standard chemo regimens there are some new things coming along, and some more advanced, customized, expensive things that could also be done (like testing my tumor to learn more about what it is susceptible to), and finally some way-out-there, travel halfway ’round the world for experimental treatment options that they could guide me to, as well.
• Become vegan to avoid many dietary factors that encourage tumor growth, or might encourage it, and to be healthier all ’round.

• Take lots of supplements designed to boost the immune system and interfere with cancer growth in various specific ways (supplements include the much-argued-over fish oil, of course, and lots of food-derived antioxidants…centerpiece of another sprawling, ongoing oncology-wide argument)

• Exercise a ton more, to become healthier, more resilient, and better able to deal with complications & chemo effects.  Heavy-breathing aerobic exercise every day, plus strength training and interval training multiple times per week.
• Invest in mind-body work every day (meditation or yoga or Tai Chi or Qi Gong or secular mindfulness/body awareness or whatever) to reduce stress, boost the immune system, etc.

So I have been doing a lot of the above, especially the exercise (which I saw no downside to at all), since the end of July.  My sorta-niece Carolyn (18) is pretty much my personal trainer.  She exercises with me most mornings, and other people at QIVC have gotten interested in joining us sometimes too, which is really fun.  When she is busy or away, I try to find someone to have an exercise date with.

Avoiding almost all meat and dairy is harder.  I have definitely cut down on dairy and didn’t eat much meat before anyway.  (But cheeeeese!)  I am researching and gearing up on some of the suggested supplements.  I’ve been meditating a bit, doing way more moments of breath awareness, and trying Tai Chi and a bit of Qi Gong.

I’m also reading the Block Center book, Life Over Cancer, even though it’s dauntingly long, because it goes into way more detail about the background, research, and justification of all these recommendations than I could get out of Dr. Block in an hour-long visit.  If I have foll0w-up questions for him after that I’m welcome to send them in for him to answer.  Knowing me, I certainly will.

All in all it was a much more hopeful story than the story from my current oncologist.  They said they can often manage metastatic breast cancer as if it were a chronic disease, for years, and ideally some new treatment comes along before they have exhausted all the options of current treatment.  Meanwhile their patients are living reasonable lives with cancer because the supportive treatments (like IV Vitamin C) and diet & exercise & supplements & meditation are keeping them healthy despite chemo.  Their published experience backs up this assertion–their approach hasn’t been tested in a randomized controlled trial, but their results for their case series of metastatic breast cancer patients are pretty impressive.

So now maybe it becomes more clear how I haven’t had time to blog!

Other things have also been going on in regular life: Will is now at Buxton for 10th grade, 45 min away in Williamstown, which is a big adjustment for all of us (luckily he has some friends from here already attending there); homeschooling began for Jesse; before that we went on a family vacation to Cape Cod and Boston for a few days; even before that, Eric & I spent two days in Southern Vermont before we picked up the kids from Flying Cloud (camp).  And yesterday I turned in my last assignment for my summer grad-school course, an independent-study research project.  What I turned in was the guts of a research write-up which should someday, in a greatly advanced form, become a paper we submit for publication somewhere.  Exciting.  Meanwhile I am taking this semester totally off from grad school–medical leave of absence.  Not sure what I will do after that.  I spent pretty much the whole summer trying to decide what to do this fall.  Subject of another blog post someday, maybe.

Meanwhile in other news I have weird hair, but I am happy to have it.  As usual post-chemo, it is not exactly my usual texture or usual color.  I asked Eric to give me a haircut last month but he liked how it looked so he basically gave me almost a placebo haircut.  So I need a haircut.

Chemo continues apace, 2 Tuesdays out of 3, with IV Vitamin C on the Wednesdays following. (I adjusted the Vit C schedule based on the Block Center’s recommendations.)  Both make me feel icky, but not too icky overall, and it passes in a day or so.  By “not too icky” this is what I mean: if there is something important scheduled the night of chemo or the day after, like a gathering of local Buxton students at our friends Gina & Richard’s house, or neonatal resuscitation training, I go.  If nothing important is scheduled, I sit in bed and read, work, or watch something on the computer, and possibly take a nap.  I don’t lose my appetite and seldom feel queasy or nauseated.  I have plenty of energy most days.  So: things are good.

Today’s oncologist appointment was cheery.  We went over my CT scan and MRI from last Friday and things are looking pretty good again.  The best news is that the one remaining brain lesion is significantly smaller (how significantly, I will leave up to those of you who can calculate the volume of an irregular ovoid 3-D shape…ask & I’ll send you the two sets of measurements).  It was smaller in all 3 dimensions.  Less-than-avid followers of this particular plotline might not remember that in June, the main brain lesion was looking a little more active, maybe even a bit bigger, than in March (which bought me a ticket to a 2-month scan interval instead of 3).  So to have it measure significantly smaller this time around is very reassuring.

And an educational public-service announcement about stereotactic radiosurgery (SRS), again: this kind of treatment (zapping instead of cutting out) is known to lead, in the months after SRS, to this kind of confusion (is it growing, or is it just slightly more visible to the MRI as part of the process of dying off?).

The CT scan showed everything the same–the two metastases unchanged in size, weird liver “hypodensity” unchanged, and most importantly, no new lesions anywhere.  My gallbladder was apparently unremarkable and I took offense at the mention of my “inferior neck structures” 🙂

After a brief discussion with my oncologist of our consultation at the Block Center (more about which later…it’s dense), we had an interesting personal talk about meditation and then it was off for chemo, in the recently expanded but quite empty (today) infusion room.

So they added two new rooms onto the infusion area by opening up what used to be a corridor of private treatment rooms for really sick folks, and they seem to to me to have missed the boat on effective design.  The two rooms are open on one side (the side that connects to the rest of the area) so they’re really more like giant alcoves.  Each has 5 or 6 infusion chairs.  All face each other–so when sitting in one, you are looked at by all the others.  This does not seem to me to be a nice way to set up the chairs.  However, it does mean that all the patients can be easily seen by the nursing staff as they walk by or stand at the open end of the room/alcove.  Still.  Our favorite chair is still at the end of the hall that comes off the main room like a little tail.  It has a great view of the medication-preparation room (with exciting science-lab hood!) and the water cooler.  Plus it’s near the bathrooms.

This book came out of a qualitative research project/dissertation by a psychologist who got interested in cancer patients with unexpectedly good outcomes–either remissions or many more  years of survival than expected.  She interviewed lots of people about what they did to enable their “radical remissions”–and despite these sometimes being called “spontaneous remissions,” they don’t seem to be very spontaneous.  The people with cancer made a lot of changes to get to their remissions, and she found similarities among them, culminating in nine specific areas of change that a preponderance of her interviewees worked on.

Eric read it too.  For each of the 9 strategies, there is a detailed anecdote about one person form whom that strategy was the most important change.  This is a a very patient-centered book; the interviewees are at the center of the narrative, because it’s about what they did.  She also interviewed alternative & integrative healers around the world who claimed to have helped patients have “radical remissions.”

It’s very easy to read, though a bit frustrating for those of us who want references for everything.  Reading it after or paired with Anti-Cancer would be a good strategy if you are one of those.

So one thing most everybody did was radically change their diet to eliminate or almost-eliminate meat, dairy, refined grains, and refined sugar.  Hmmm.

More soon on my informative trip to the Block Center in Illnois.

I’ve finished my ninth round of chemo now and it continues to be quite bearable.  Maybe the IV Vitamin C and the acupuncture I get every week a day or two after the chemo are doing some good!  The anti-osteoporosis shot I get every month laid me a bit low for a few days last week, but in general I’ve been feeling pretty normal, and life has been what I would call normal-ish.  When I’m not feeling so hot I find it hard to work or do schoolwork, because I don’t feel like thinking.  So I do a lot of reading and sitting around in bed watching Netflix and wondering when I will ever be motivated enough to “get back to work.”  And then I am, so I do.  Eric and I have been talking about the purpose of this cycle for me.

In a few weeks I’m going to have a consultation at the Block Center for Integrative Cancer Treatment in Skokie, Illinois (next to Chicago).  Should be interesting to find out how they would treat me, and if there are pieces I can adopt here (or if there is any way I could get treatment there without having to move).  They integrate chemotherapy, nutrition, supplementation, massage, psychotherapy, exercise, and mind-body strategies all in one place and set of care providers.

Hopping without smooth transition from topic to topic, here’s a quote I found on the blog of a mother with metastatic breast cancer, Lisa Bonchek Adams, writing about her three young and early-teen children:

“I just wish I could be there for them to outgrow
by choice,
by time,
by age.”

(Ouch.)

Eric has read, and I will read soon, the book Radical Remission by Kelly Turner, Ph.D.  It’s an investigation into the cancer patients who get well or live much longer than expected–what did they do, and are there commonalities we can learn from? Perhaps more on that later.  For now, time to go see how the kids are doing packing for 3 weeks away at camp!

…at least not about my health.  Or rather my Health.  Friday before last was one of those days when I had to admit my life is a little bit more complicated than most.  It was time for another brain MRI and CT scan (chestabdomenpelvis, as the CT techs say it).  The schedule for these is every 12 weeks–that is, every 4 chemo cycles.  The March ones showed the tumors shrinking a bit, which in the brain was an expected result of January’s stereotactic radiosurgery, and in the sternum and lung was less expected and quite positive, because even just no more growth would be quite good enough.

The June scans were not as clear-cut as in March.  The sternum met might be a millimeter or so bigger, and is “more dense,” whatever that means–my oncologist didn’t know whether that was good or bad.  The one in my lung is unchanged.  Most of the brain lesions have shrunk away, one is notably smaller than in March, but the biggest one did not shrink and in fact it might be showing more swelling around it, and more activity, than in March.  Again by a couple millimeters.  The best part of both reports was that they did not show anything new.  So overall, they were pretty good.  But with some ambiguous bits.  The take-home summary was: “good, with two small question marks.”

The brain question mark got us an appointment this week with the neurosurgeon, and the suggestion (from the oncologist) of a follow-up brain MRI in 4 weeks.

Meeting with the neurosurgeon was reassuring overall (though I still can’t shake the image of him as the fast-talking smart jock on the high-school schoolbus). He said he “wasn’t very impressed” by the comparison March-June (this is good) and he would be fine with following up on the original 12-week schedule, or 8 weeks, but certainly not less than that since these things are slow and another ambiguous result would be not worth the hassle.  The changes could be just post-radiation reaction.  The bigger the original lesion the less likely it is to go away and the more likely it is to just stay the same size overall.

So we got to see some cool MRI images of my brain–thank you, anatomy & physiology classes!–and I’ll have my next brain MRI in early August.  Meanwhile we just wait, watch out for symptoms (which I don’t have at all), and wonder whether anything bad is going on.  As Augustus says in The Fault in Our Stars, “Apparently, the world is not a wish-granting factory.”

Meanwhile chemo continues to be quite bearable, I’m getting IV Vitamin C, the boys are out of school, the fireflies are amazing at night in the field below our house, and I’m eating ice cream way too often.