Signs of “normality” and the Totally Abnormal

Lately there have been a lot of signs of life returning to “normal.” Two days ago I got my first real haircut since last March. On Sunday we hosted the regular Snowflower Sangha meeting at our home – the kind of thing we used to do a lot of, but haven’t done since my diagnosis (so if 15 people meditating in your living room is “normal,” then this definitely qualifies). Last week I had my 6-month follow-up with the cardiologist who saw me when my troponin levels were elevated (a sign of a possible heart attack) in July; my troponin levels and my repeat echocardiogram were normal. I also drove with a colleague to Milwaukee, where we joined two other colleagues in delivering a 3-hour workshop introducing the Art of Transformational Consulting  to attendees at the Nonprofit Center of Milwaukee. Last week my stepson Sam and I resumed our weekly lunch date.

Today, my body seems to have begun remembering how to sweat normally. My seeming inability to perspire (instead my “hot flashes” have been prickly-heat all over) is one of the more bizarre symptoms that I’ve had. Until today I thought maybe I was imagining it, or that it was perhaps something that is “normal” in menopause, or at least chemotherapy-induced menopause. Then there’s this article my uncle found about how common “acquired thermal discomfort symptoms” are after cancer treatment. But it doesn’t seem to talk about an inability to sweat. Maybe, I thought, it’s just that it’s winter and I’m not sweating because it’s cold. Or maybe, I thought, I really am sweating, but can’t feel it or smell my own body odor like I used to be able to. Now, after seeing the same uneven pattern of moisture under my armpits on two separate changes of clothing today – lots more moisture under the right armpit, which is the one that’s less numb from the surgery, and also the one where the surgeon had an easier time finding the sentinel lymph nodes – I think this might actually be a side effect of the lymph node removal. Although I just found this youtube video where a doctor says the sweat glands aren’t affected by lymph node removal, so who knows...

What made me sweat today? 2 out of 3 of the things were more signs of “normalcy.” One was going cross-country skiing, for only the 2nd time this winter. The second and third were two back-to-back phone calls where I was somewhat nervous about the interaction. The “sign of normalcy” call was one where I was resuming a regular coaching relationship that I’d put on hold for a few months, and I was communicating some “negative” feedback to my coach about something that happened with her last summer, not a very comfortable thing to do. Immediately after that I got on the phone with someone I didn’t know at all – the lead author on the report of the medical research that led to my ultra-lowfat diet.

If you’ve been following my blog you have probably heard about this diet, and some of you have raised useful questions with me about it, e.g. Is it all fats that are bad, or just the “bad” fats? I had a bunch of questions, and had emailed Dr. Rowan Chlebowski in early December with a list of them. Essentially, I was asking, is there really enough evidence to support me staying on this very restrictive diet the rest of my life?

I didn’t hear back from him, and at my 3-month follow-up on 12/22 my oncologist said she’d follow up with him. When I still hadn’t heard anything early this week, I resent the email with a polite new header paragraph asking if it had gotten lost in his inbox during the holidays. While normally I wouldn’t have been surprised to have this kind of email ignored, I had included the following paragraph, which I thought would likely get his attention:

I have no idea how much it would cost to do these additional analyses, if they are possible at all, much less to support whole new studies. I am no Bill Gates, but do have a modest amount of philanthropic money to allocate, and would of course be highly motivated to support research of such immediate significance to my life. I’m only 48 so I’ve potentially got quite a few years of abstinence from delicious foods ahead of me if I decide to stay on this diet and don’t get metastatic cancer!!

Well, after I re-sent the email, he emailed me back yesterday and suggested we talk by phone, which we did this morning. In addition to making me sweat, it was useful in other ways. My summary of what I took away from the hour-long conversation includes:

— A more recent study he’s working on, the Women’s Health Initiative (a study which started with 160,000 women without cancer diagnoses and included a dietary intervention similar to the WINS study, plus exercise), is lending some further support to the results of the original WINS study, though they have not yet published the positive results, where they found that women in the treatment group who were diagnosed with breast cancer during the study period have shown around a 30% lower risk of death from the cancer than their control group counterparts

— Controlling for weight loss in analysis of this data indicates it’s not the weight loss that has the explanatory value

— The positive effects of the diet go away when people stop contact with the nutritionist and drift off the diet, so long-term adherence to the diet (within the extent allowable while participating in society which feeds us completely the opposite at every turn) is useful

— Because their research is aimed at what kinds of changes are possible for large populations, they are not looking at drastically changing the Western diet, just trying to get people to reduce their meat & dairy, take the skin off the chicken, cook with less oil, and eat fewer high-fat desserts. They are not trying to get people to switch entirely to an Eastern diet, for instance, and so they are not focusing on plant vs. animal sources of fat or whether soy has benefits independent of the other differences in lifestyle that are inextricably intertwined with it. The types of fats consumed were not very different between the treatment and control groups, so it’s unlikely to be a “good fat/bad fat” effect.

— Aiming for 20% calories from fat would allow me not to alter my diet so drastically as I have done to achieve 15%; and some evidence from the WHI study suggests that increasing fruits & vegetables may also be important, so I may modify my target so that I’m not quite so inclined towards the lean meat and nonfat dairy strategy I’ve been using to get enough calories without consuming too much fat

— Dr. Chlebowski & colleagues are hoping their recent but not-yet-published results, referred to above, may get the dietary intervention study enough credibility to get funding to do a bunch more analyses, to try to get at mediating mechanisms, which if they were understood might yield pharmaceutical means of accomplishing the same outcomes (like statins do for cardiovascular disease)

— It might be useful to get my fasting glucose level checked because this is one possible mediating mechanism between the diet and cancer; if it’s in the high end of normal I could consult with people who look at “pre-diabetic” conditions to look for specific dietary interventions for that (I raised this issue because I’ve been wondering whether or not I should also be watching my sugar intake, because sole attention to fat sometimes causes me to increase my sugar intake, and there is a lot of talk these days about cancer cells being “fed” by glucose).

— He doesn’t think environmental causes like pesticides and growth hormones in factory farming are likely the culprits in the increased breast cancer rates. He thinks the weight of scientific evidence is not there for that argument, and also pointed out that people prefer to blame an external cause like that, than to look at their own behavior choices like diet and exercise.

— He is happy to discuss this all further with me at any time (and likes my blog :) ).

— He pronounces his last name “Chebowski,” simply ignoring the “l”, since he doesn’t know Polish well enough to pronounce it correctly.

And yes, we talked about the possibility of my family foundation contributing towards his research.

While part of me cringes at using my economic privilege in this way, I am comforting myself with the following train of thought:

— I really didn’t just add that paragraph to get his attention, though I hoped it would also have that impact; I really am interested in the possibility of helping make more research on dietary interventions happen.

— While it seems a little selfish to just try to fund research that has direct implications for me, rather than cancer research in general, it would, of course, ultimately benefit others if successful. I also seriously considered participating in a clinical trial in that would have possibly benefitted me and others in the future with a similar disease profile; would that have been more noble than targeting money in this way, because I’d have been giving blood rather than money?!?

— It may feel like money we don’t want to spend on this (we generally prefer to give our money to social and environmental justice type causes), but on the other hand I nearly decided to spend a large amount of money to go to MD Anderson in Houston to get a second opinion, and ended up not doing that because it became clear they didn’t have much more to offer.

Of course, we might decide not to contribute to his research when we see his proposal. For one thing, I’m not sure I’m really behind the idea that if the research is successful, this dietary intervention could be replaced with a pill like statins. It seems like part of what’s broken about our culture and our medical system is that we want the quick fix of a pill. Sure, it would be easier (literally) for a larger number of people to swallow, and it would make the pharmaceutical company that patents it a lot of money, but it would be at the expense of the many added health and psychological benefits of the going-back-to-home-cooked-meals-and-quit-sitting-around-on-your-duff kind of lifestyle changes that this diet requires.

In any case, Dr. Chlebowski seemed like a really nice guy and I am grateful to have spoken with him. Chasing down an expert in a field I know very little about doesn’t feel like “normal” life to me, but as my coach suggested to me today, I may be different now. She said I sound more ready to take a stand for what’s essential and mobilize towards it.

Okay, so now for the “Totally Abnormal” part of this blog promised in the title. As you may know, despite my celebration of returning to "normal" life, I mostly view the concept of "normal," at least the way we usually use it, as highly overrated and more often than not, downright oppressive. I’ve recently become aware of an awesome blog called Totally Abnormal: A celebration of all people and things that don't fit into boxes. It is written by a young woman I know (whom I won’t identify for the sake of her anonymity, which she is protecting because she’s a minor), and it exemplifies the kind of courageous, creative writing that I aspire to; educational about the struggles the writer is facing, while inspiring others. And, it's really, really well-written.  Enjoy it.

And enjoy your sweat. Really.