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I don’t know about you, but I have lost count of the number of people with cancer I have met or learned about who say something like, “Before I had cancer, I was the picture of health.” Hence that’s my first question for you today (and in the poll below): How healthy were/are you, “apart” from having cancer?

I look forward to seeing the poll results and also your comments about this apparent correlation. But I also beg your indulgence in reviewing with me two different kinds of approaches to defining health.

The first and probably easiest of the two to address came to my attention again just this past week, when I went to see my PCP to check out several moles on my skin. I had no real apprehension that any of them would be malignant, but I am a little alarmist on the topic since my brother is a (25-year) melanoma survivor. The medical practice I use considers itself to be “integrative,” which I have taken to mean that they are willing to use a variety of therapeutic approaches, for one, and that they are interested in treating patients holistically, for another. The lead doctor in the practice, for example, has also trained in anthroposophical medicine, and is one of the few in the area who will administer iscador (mistletoe extract) as a cancer treatment.

I have no real complaints to levy about my recent treatment; the moles were excised with relative dispatch by a doctor and resident who had the grace to laugh at my feeble attempts at humor. (I allowed as how I felt like a house whose walls were being prepped for painting. Since one of the moles I had removed is colloquially called a “skin barnacle” maybe I wasn’t too far off.) But when I got the post-visit paperwork I became very annoyed.

Recently the whole medical record system was changed on many levels, with one objective being greater ease of access by patients to their medical documents. Whereas previously I might have seen on intake a whole list of medications I’m (supposed to be) taking, for example, now I have that list upon discharge, too, along with any follow-up instructions. That’s all fine. What bothered me was seeing a list of my “problems or conditions.” Now, some of these issues—like perimenopause!—are now definitely moot, while others are perhaps inaccurate or overly broad. Mostly, I objected to the jarring (and inaccurate) statement that because of my lung nodules discovered last September, that I had Stage IV B endometrial cancer. That’s just not how the staging process works. I had a clinical staging done, pre-surgery, which was a Stage I; upon surgery, when lymph node involvement was discovered, the final staging was a Stage IIIB2 (per FIGO scores). It’s important for the original stage to be maintained because that reflects upon later treatment and survival, not just for me personally but for whoever is gathering epidemiological information. It irks me that they should have made this kind of error.

More significantly, though, I find myself irritated to be considered a concatenation of symptoms again, even by a practice that considers itself to be nontraditional. I am most definitely more than the sum of those particular parts, and I may even be willing to consider myself to be fairly healthy still, cancer and the other odd condition or two notwithstanding. Somehow there should be a system that accounts for a more comprehensive assessment of “health.” Don’t you agree?

The other arena of thinking about “health” that I’d like to share here is more abstract and consequently less developed at this point. I hope you won’t mind me venturing to discuss some of my thinking along these lines, undeveloped as it may be, as I expect to grapple with this more comprehensive definition of health for some time to come.

I always considered myself to be relatively healthy before my cancer diagnosis. Relatively is a key word, of course. Compared to my elderly parents, who are now in their 90s, though each has been dealing with life-long debilitating conditions, I have been in great health. (My father is a polio survivor, having caught it in 1921, part of the same epidemic that affected FDR; my mother has osteoarthritis and several other issues that have severely limited her mobility.) But that’s another conundrum right there, since they are both now part of the so-called “oldest old,” having somehow managed to survive despite their longstanding illnesses. I must admit when I was first diagnosed I was incredulous in part because I blithely expected my parents’ longevity to be a predictor of my own, and because there’s little history of cancer on either side of the family. And perhaps it may still be so. If so, however, it may take a little (or a lot) more effort than I had anticipated.

Now that I’m on the other side of the diagnostic divide, I’m coming to consider my health from a different perspective than I did when I was younger. In my twenties and well into my thirties, I was quite active and generally fit. For about eight years, I was an active martial artist and self-defense instructor, and given my level of activity I found it easy to maintain a fairly stable weight. I had an easy first pregnancy at 26, and quickly returned to form soon after delivery, loving the excuse to eat more to be able to nurse effectively. After the birth of my second child when I was 38 ½, however, I found it much harder to lose the baby weight—partly because of the chronic and unrelenting stress that was beginning to be part of my life by that time. I had left a secure but unsatisfying long-term relationship in connection with starting to deal with my history of abuse, shortly before I remarried and had my younger daughter; unfortunately, the partner I chose was not as supportive or as nurturing as I needed him to be. On top of coping with this doomed marriage, I had also recently embarked on a career do-over, going back to school at the age of 34 for my Ph.D.

There were so many errors in judgment that I made in that regard, it is painful to revisit. Let me simply observe that the circumstances in which I eventually found myself--a single mother of two in my mid-40s desperately striving to finish my degree--were not conducive to good habits of diet and exercise, let alone to other self-care habits in support of my mental health. I had also been spoiled from all the years I had enjoyed a robust metabolism while a busy martial artist, and somehow I didn’t think that the statistics about women approaching menopause should apply to me!

The combination of chronic stress, chronic lack of sleep, and chronic lack of attention to my physical and emotional well-being resulted in a pretty significant weight gain over the course of 15 years or so. Almost all of that weight, probably about 30 pounds, was concentrated around my middle. I did have a stretch in my late 40s when I lost almost all of that weight, but it was not carefully done and so I suffered from the rebound effect.

For the most part, however, no matter how tough things got, I just soldiered on. What point was there, I thought, in expressing my frustration and despair with how stuck I felt, how scared I was, how powerless and impotent I believed myself to be? I had a roof over my head, food to eat, clothing for my children and myself. Many people had it much worse, I realized, and besides, I had made the decisions that produced my current circumstances. I had no right to complain. Even if I did, it wouldn’t help, and the last thing I needed to do was expend my limited energy on pointless endeavors. I already had graduate school to fulfill that particular need.

About ten years ago, I was at my lowest point. I had just recently left my husband with my two girls (then 15 and 3) in tow, and for a variety of reasons the funding that I had been counting on for the semester was more limited than I had expected.  My daughters’ other parents contributed virtually nothing in child support, and my fellowship that semester covered only a little more than the rent. I am not entirely sure how we survived, though I have some memory of frantically juggling bills and running up a credit card balance. Some time afterwards I spoke publicly to faculty in my department on behalf of the campaign to increase fellowship stipends to equal what people could earn from teaching (so that winning a coveted fellowship didn’t become a Pyrrhic victory). That experience of talking about living so painfully on the edge was itself one of the most excruciatingly self-revealing moments of my life; actually living through it was far more difficult.

In retrospect, could I have extricated myself from what I felt compelled to finish, once I had started? Could I have chosen work and family patterns that may have been “healthier” in the short and long run? Maybe. Only maybe. In the 1990s, during comparatively good economic times, I still thought I had a fighting chance of making it through grad school in one piece and then being able to move forward. After 2000, as we know, things changed for the worse. And, really, it is not a matter of evading my personal responsibility to point out that from the Reagan era forward, we have all been squeezed more and more tightly. More importantly, I didn’t then and so the question is moot. And, for that matter, why should so many of us be in the position of wishing that we’d had the extra money to invest in Apple shares, or that our Lotto tickets would hit, since our other plans went so awry? What is it about our cultural moment that makes health more and more a prerogative of the wealthy (at least, on first glance)?

One of the reasons I went to graduate school, I came to understand, was precisely to acquire the tools and the background knowledge to be able to relate one person’s experience to his or her cultural context. An enormous project, of course, but one I think of crucial significance to the question with which I began this diary.

Who can define health, for any one of us, without taking into account our social and political moment, the conditions within which we are born, live, work and die? We see in works like The Spirit Level how fundamentally important the overall functioning of a society is to the well-being of all its members. We also see from our own daily experiences how much harder it is than it needs to be to live a well-balanced, comparatively secure life. For some of us that objective is so impossible it is even hard to imagine.

I am thinking regularly about how to live a more healthy life in all dimensions, but I must admit as well that I fervently believe it’s not a solitary pursuit, or at least it can’t be if I have any chance of success. We are indeed all in this together.

Your thoughts? What kinds of details would you like to see included in your medical record related to your health? How do you define health, and what has led you to the elements you include in your definition?

Poll

How would you describe your general health, except for cancer? (for caregivers, please consider your loved one's health here)

14%4 votes
25%7 votes
21%6 votes
21%6 votes
10%3 votes
3%1 votes
0%0 votes
3%1 votes

| 28 votes | Vote | Results

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