Rx: Stop Crushing Hope

October light

The following is a heavily revised version of a letter I sent the palliative care physician with whom I met a few weeks ago, who kindly shared an article from JAMA, “Holding Hope for Patients With Serious Illness.”

Dr. S.,

“Holding Hope for Patients With Serious Illness” is outstanding, and I’m thankful that you shared it with me.

I appreciate the authors’ readiness to allow patients[1] to control our own narrative, given the basic data that medicine can provide about any serious condition. It’s trite at this point to note that the condition does not define the person, but as one currently on the patient side of the relationship, I can tell you that’s still how it feels in 2021. I appreciate that doctors have a massive challenge when it comes to what the article calls “serious illness”; they’re trained to help, to cure, to heal. And in many cases, healing, at least in the sense of a cure, is not within the reach of medicine. That has to be nearly as hard for doctors as it is for patients. I also appreciate the legal and ethical dimensions of medical care, in part thanks to my graduate training in ethics, which focused quite a bit on medical ethics. But there is so much more to healing than what conventional medicine provides.

A feeling of agency is all-important, yet despite many medical institutions’ claims to value patient engagement, hopefulness itself, as a form of agency, does not appear to be appreciated – at least, by the doctors with whom I have been working. When you have my diagnosis of Stage IV pancreatic cancer (or one similarly “serious,” as the title puts it), mustering and maintaining any kind of hope requires enormous effort. We are brought up to consider various kinds of cancer a death sentence. Then we find ourselves diagnosed with one of these cancers, and cared for by doctors who repeatedly make clear – in diverse ways, only some of them verbal – that they firmly expect us to die in short order. Believe me when I tell you that the overwhelming message is: “Of course there is no hope, and if you feel so much as a glimmer of it, you are sadly delusional.” No wonder the stats for survival of pancreatic cancer and glioblastoma are so low. What do you think this palpable “certainty” does to people? Again, I respect the statistics etc. regarding the lethality of this disease, and I am not afraid to die. (I won’t elaborate why here, as this is already long enough.) But people do literally incredible stuff every day. People break records every day. None of that happens without those people at least being able to conceive of the possibility. In many other areas of human endeavor, the importance of outlook is not in dispute. So why is this widely recognized fact not being applied in the case of the most challenging cancers? I realize this may sound idiotic, but it’s not. Ask Naomi Osaka and Simone Biles, to name just a couple of curve breakers who have publicly addressed the critical importance of conviction to physiological achievements.

It is impossible for me not to ascribe this denial of hope to (a) a desire to avoid lawsuits, (b) a desire to get high scores in expectation management, and (c) a cost:benefit algorithm devised in collaboration with the insurance industry. It really is an active denial of hope; in my case, it has manifested itself in different ways. Let me cite three: (i) No oncologist suggested that I try the alternate chemotherapy regimen; I had to request it of my own accord. (ii) No doctor has even mentioned that a small number of people diagnosed with pancreatic cancer at Stage IV survive for years. I have only heard about this from relatives, friends, Marisa Harris, who has survived pancreatic cancer diagnosed at Stage IV for 21 years (without a Whipple or pancreatectomy), and complete strangers commenting on blog posts, Instagram posts, and the like. (iii) Not once have I even heard mention of the actual survival statistics with Stage IV pancreatic cancer, which offer some justification for hope.

A little digging and a few conversations with survivors of pancreatic adenocarcinoma diagnosed at Stage IV are enough to at least spark hope, which also happens to affect behavior, and behavior in turn affects how we feel, and at least to some degree how our bodies function. I know that my body created the cancerous mass in or on my pancreas that now threatens my life, and I am actively doing everything I can to help my body send the cancerous cells packing, because they have served their purpose as an urgent call for change. (Excuse the dichotomies in my language; I don’t subscribe to a mind-body dichotomy but am using “body,” “mind,” and “cancer” somewhat metaphorically to identify aspects of a whole. I know enough to appreciate that “my body” would like to be rid of the cancer.)

But back to the article. More than anything, I appreciate the authors’ willingness to dwell in the grey zone instead of maintaining the stance so common among physicians – at least, in many of their interactions with patients – that things are black and white, and that numbers (whether statistics or results of blood tests) define what is real and possible, in effect to the point of predicting what is or is not going to happen. If I didn’t have a solid will, a curious mind, some well-informed woodworking friends (among them a brain surgeon and a research oncologist), and a stubborn streak, I would still be accepting the inevitability of my death in a short time as a result of this condition. It may happen, and if so, I will make my peace with that, something I have been actively working on since childhood. On the other hand, I may live for years. That’s my goal, because I want to be here for people I love, and there’s a lot more work I want to do.

Doctors cannot predict the future any better than most people, but if you were standing in my shoes, you would find it easy to imagine that some of them believe they can, because that is the message conveyed by the majority of my interactions with oncologists to date. The calculation of odds is retrospective, not forward looking – i.e., it is based on what has happened to date. But where members of the general public are concerned, this qualification about statistics not being the same as odds of future outcomes is more often assumed to be understood than it actually is. As a result, many cancer patients interpret the statistics as the odds of their own survival. The actual odds of our survival are likely to be higher if patients are encouraged to believe that we at least have a chance. I understand that this retrospection is consistent with the scientific method, but it is not the only way to look at serious illness such as cancer, and it is certainly not in the patient’s best interest. Even the financial services industry is legally required to post disclaimers that past performance is not a guarantee of future performance.

Now to the question of “facing reality,” as distinct from living in “denial.” While staying hopeful, I have no problem acknowledging the diminishing likelihood of surviving for more than the next few months as I get farther from the date of my diagnosis. It is affirming to see the doctors who authored this article refuting the paternalistic nonsense about patients needing to be brutalized (my word; that is how it feels) with routine reminders of “what is coming” in order to take their situation as seriously as it warrants. I would, though, like to see scare quotes around the word “false” in the following quote:

“Another report presumed that hope, especially when unrealistically optimistic or false, was potentially harmful because it could lead to noninformed decision-making and overly aggressive treatment. These presumptions are not supported by the literature. Existing data suggest that patients with false hope report better psychological outcomes than those who have lower or absent hope. Indeed, patient-endorsed hopes rarely equate to true delusion or misunderstanding.”

Hope is hope, regardless of how “well founded.” And here I am using scare quotes because again, the foundation that doctors are considering is based on past performance and doesn’t appear to take account of factors that defy quantifiable measurement.

These authors argue convincingly that most patients have the existential wherewithal to maintain hopefulness while putting our affairs in order, etc. in case we die sooner than we would prefer. Most adults are not simple-minded, but too many doctors treat us as though we were. I daresay most of us are able to live with complexity. Life is never as black and white as the experience of being a patient in this medical system might suggest. I am lucky to have woodworker friends whose day jobs are in medicine to help me appreciate this perspective. Those of us who can see the disconnects between our everyday experience of life and the extraordinary experience of oncology-world must constantly remind ourselves that life itself exists in the grey, not the black and white. Even high-school biology students are aware that our own cells are continually dying (or being killed by other cells) and being replaced. Physiologically speaking, much of what makes me “me” is not the same material that comprised me 15 years ago.

During this experience I have repeatedly had doctors “endeavor to convince [me] to give up [my] hopes and accept the clinician’s projected reality.” To me, at least, such attempts do feel brutal; they also seem wrong on principle, not to mention when viewed from a consequentialist perspective. Do my oncologists recognize that their approach implicitly discourages hope? I want to give them the benefit of the doubt, because I believe they are good, caring people. But when Dr. #1 starts a new chemo regimen with the statement “No one is going to live forever” and immediately refers me to a palliative care specialist, she might as well be forecasting the failure of the treatment; that is how such a statement, given the timing, comes across. I realize that she was trying to make it possible for me to a palliative care specialist sooner than I would have if she hadn’t brought it up that day. But still. Words and their timing matter. I am conveying to you, fully and honestly, the effect on me of those words and their timing. This psychological effect is so relevant to healing that statements such as this (and others I mentioned during our conversation in your office) could be seen to constitute a violation of the Hippocratic Oath.

Every interaction with oncologists leaves me deflated. After each one, I have to make a supreme effort to regain a sense of hope. I loved the conversation with you, and then I made the mistake of reading your notes. I shouldn’t have, because I saw yet again the relentless banging of the death drum in the statement about six months from now being the mean survival time in my case.[2] What is the point of even bringing this up in your notes? Is it some kind of assurance to the insurance industry that yes, the patient understands that she probably has just a few months to live, and so will probably not continue to expect you to keep paying for her medical care? Is it a way of assuring the doctor’s hospital system that the patient is unlikely to sue if she does not recover her health? I understand that the latter is a reasonable concern, but why does this belong in a doctor’s notes? Maybe I am missing a benign explanation, but by the time most of us have been referred to a palliative care professional, we have almost certainly been apprised, more times than we can remember, of our prognosis based on statistics.

As for those particular numbers, I am not one of those glibly-cited Americans who, based on statistics published by PANCAN, conflate a 3% chance of surviving three years to a 50% chance. And (not “but”) I still regard 3% as fairly generous odds, based on my life experience; I have encountered worse odds on multiple occasions. As the article acknowledges, cultivating hopefulness, even in the face of daunting odds (not to mention doctors who themselves in effect conflate 3% to zero — and that is damning) can also be beneficial. And I can tell you, as one in a pointed existential position, that hopefulness makes every minute of my life far richer than it might otherwise be.

The article does contain a few condescending statements. In the final paragraph of page 2, the authors suggest that “[p]atients could then be asked, ‘Given what is coming, what are you hoping for?’” Again, notwithstanding that we will in fact all die, this “given what is coming” seems condescending and too close to predictive. The following paragraph also starts with condescension; I recognize that doctors today are expected to be more humane than was deemed acceptable decades in the past, but I don’t see how it is the responsibility of medical doctors to “prioritize conflicting hopes.” Is that your job, at least insofar as hopes extend beyond decisions regarding healthcare and the legal machinery surrounding death? I don’t want my doctors even trying to cover that stuff, because none of them is qualified to do so.

I would have loved to see, in the penultimate paragraph, an acknowledgement that “[Holding hope]…demands…willingness to both change directions and move forward without knowing what is coming” is something that applies to everyone, regardless of health status. That is an objective aspect of the human condition, at least among those of us who care to hope and have the inner resources to do so. Perhaps such a note would have exceeded the word limit, but if not, it should be there.

With gratitude,

Nancy Hiller

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[1] I have always disliked that word, with its connotations of passivity and suffering (from the Latin, for “to bear,” “to be afflicted,” or “to carry from underneath”), and wish there were a substitute for those of us in any state other than deeply sedated, under general anesthetic, or comatose.

[2] Let’s also acknowledge that these numbers are just a guide to what is happening and what is likely to happen. Addendum: Jenifer Van Winkle, a friend who is a registered nurse, pointed out to me that my doctor’s note about “six months” was a way to make sure that I would be able to sign up for hospice care, should I need it — i.e., not an unnecessary reminder to the patient but a heads-up to the medical industry regarding my case. I wish that doctors could explain such details to patients. Doing so would strengthen trust, instead of eroding it.

Fine Woodworking and Women’s History Month, Part Five

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Fine Woodworking and Women’s History Month, Part Four: A salute to those who support others from behind the scenes

In many cultures (including ours, for North American readers), women have historically worked in occupations behind the scenes of public life. Generally speaking, western culture (I can’t speak for any other) has long privileged the grand, the public, the exceptional, and taken the work that sustains those who are publicly lauded for being grand and exceptional for granted; I’m referring to those who grow, harvest, and prepare food; who clean houses or launder clothes; who bear children; who care for those who are ill. Men have historically been raised to dream big and to lead in positions that are widely acknowledged as important; they have benefited from opportunities and support (some of it tangible, some less so) to help them reach their goals, while women have been brought up to marry well, run the home, and raise a family. If this sounds like a stretch, ask your grandmothers and great-grandmothers about their experience. And please see my note at the end of this post.

One of the most incisive critics of this perverse ascription of value was the 19th-century social critic and reformer Catharine Beecher, who calmly pointed out that “the chief cause of these evils is the fact that the honor and duties of the family state are not duly appreciated,” even though the most powerful men – from the owner and managers of your local factory to heads of state – typically had wives and female domestic workers at home whose dependable labor made it possible for those men to focus on their Important Business. Remember, Beecher was referring to the mid- and late-19^th century. So, who really had the power, considering that without the necessary labor provided by those women, men would have had no time to go to school, let alone obtain professional training and go on to achieve Great Things?

Today let’s look at a fun twist on that historical picture with a note of appreciation for the women who run the workshops at some of this country’s schools. Accomplished woodworkers themselves, their work provides a foundation for that of others. Workshop techs of any gender tend to operate in the background, echoing domestic workers in the 19^th century.

I readily admit I’d rather be doing any number of things than changing the knives in my century-old jointer or tweaking the adjustment of my drum sander to get rid of snipe. A skilled shop tech is invaluable. I’d love one of my own.

@littleforestswontdo Chelsea Witt at the Center for Furniture Craftsmanship

@hittme Mary Ellen Hitt, formerly on the maintenance crew at the Center for Furniture Craftsmanship

@ellenkasperndesign Ellen Kaspern, who teaches machine maintenance at North Bennet Street School

@aspen_golann Aspen Golann, who runs the workshop at Penland

@ellieinthewoods Ellie Richards, who ran the shop at Penland before Aspen and is currently a resident artist at Penland

@carnahanwoodworks Lacey Carnahan at the Port Townsend School of Woodworking

@robins.angela Angela Robbins, who ran the shop at North House Folk School in MN

Please add others in the comments. The original posts are below, in case you’d like to read comments and add to them.

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Fine Woodworking and Women’s History Month, Part Three: Giving credit where it’s due

At least one commenter has questioned why a week of attention given to women in particular should be necessary at this moment in history, when posts on social media suggest there are already so many women in woodworking that the matter of representation in traditional publications has become a non-issue. That there are many women woodworkers is certain – and as with most kinds of social change, this increase is largely due to those who have been speaking and writing about what students of social change call “barriers to entry.” As commenter Steve Hogarth (on Instagram @stevehogarth) took pains to point out,

“[The term] ‘barriers to entry’ covers more than straightforward sexist discrimination. It includes things like, but not limited to: being told all your childhood that things like that aren’t “for you,” gendered school curriculums, teachers and tutors providing more guidance and opportunity to the ones they feel ‘more likely to pursue/succeed in the field,’ not seeing anyone that looks anything like you in magazines and publications, not seeing anyone like you being given a high profile in the industry, seeing people like you being patronised, harangued, and told how they could do it better by people who think they know better because of how they were born.”

I appreciate that some of this may appear to be a stretch, but having lived through all of the above, while accepting that that was “just the way things are” and not complaining about it, because I was brought up to get on with things and plow through the figurative mud, I can attest to the potential of such seemingly negligible experiences to discourage members of various demographics from getting involved in one activity or another. This stuff is exceedingly nuanced. And the nuance just makes it more insidious (from the Latin word for ambush; in other words, it’s hard to see until you’ve already been “attacked,” to continue with the ambush metaphor).

So today I’m going to mention some people who have worked hard to bring about the change we’ve seen and continue their efforts to make things better. I hesitate to list people and publications in this series because I will inevitably be leaving many out, so please understand that this list is not meant to be anywhere near comprehensive. My point is to give credit where it’s due, as well as encourage those interested in learning more to do so from these and other people.

For me, the most influential person on this subject has been Megan Fitzpatrick. It’s ironic to read some comments that imply (or state outright) that I should listen to other perspectives on this subject, considering that my present views, which I’m sharing in these posts, are quite different from those I held just a few years ago – namely, “just get on with your work and don’t even mention gender.” It’s Megan who first persuaded me of the point Steve Hogarth made above. When she invited me to make three presentations at Woodworking in America circa 2015, I was blown away by the diversity of presenters she had made a point of including. Not only do such efforts provide a picture of “what woodworkers look like” that’s more in line with reality; they also help bring new people into the field, which is essential to the survival of any craft.

Laura Mays has been *seriously* influential with her calls to increase the representation of women and members of diverse demographics in woodworking publications, teaching, learning, and elsewhere. She and Deirdre Visser have authored a forthcoming book, “Making a Seat at the Table: Women Transform Woodworking” related to a 2019-2020 exhibition by the same name, which was held at Philadelphia’s Center for Art In Wood. As Director of the Fine Woodworking Program at the Krenov School, she is actively working to increase diversity in the field.

Sarah Marriage (@sarah_marriage) used her award from the John D. Mineck Furniture Fellowship to start Baltimore-based A Workshop of Our Own, which offers shop space and classes to women and gender-non-conforming others, as well as Black, Indigenous, and other people of color.

Chris Schwarz (@lostartpress) has championed the cause of diversity among woodworkers in ways that often go unnoticed (because that’s how he rolls).

Katie Thompson regularly features work by women, hosts podcasts, and shares a variety of resources at @womenofwoodworking on Instagram.

Annie Evelyn of Crafting the Future (@annie_evelyn_furniture), Claire Minihan (@cminihantravishers), Kelly Harris (@kellyhappis), Danielle Rose Byrd (@danielle_rose_byrd), and Amy Umbel (@amy_umbel) are just a few other accomplished woodworkers who work hard to encourage others.

You can find a dazzling variety of women woodworkers in the Instagram stories linked to Leslie Webb’s feed @lesliewebbdesign

This isn’t even the tip of the iceberg of those who have contributed to making this difference – not to mention those women who, for decades, have been successful woodworkers and thereby provide examples for us all, among them Judy Kensley McKie, Lynette Breton (@lynettebreton), Meryll Saylan, and Aimé Ontario Fraser.

A number of woodworking schools now offer scholarships to women and people of color. Among them are the Krenov School, Port Townsend School of Woodworking, Fireweed Woodshop of Minnesota, the Florida School of Woodworking, Penland, and the American Association of Woodturners. Again, these are only a few of those who deserve recognition on this score. If you’d like to share other resources, please do so in the comments. The links to this content on Instagram follow, in case you’d like to read or add to the comments.

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Fine Woodworking and Women’s History Month, Part Two: Increasing the visibility of women in Fine Woodworking

Spoof cover made by then-Art Director Mike Pekovich in 2006, after he visited my shop with Anissa Kapsales for her first out-of-town shoot.

Fine Woodworking has always published readers’ work. Every issue of the magazine includes guidelines for proposals, which are also available on their website.

Occasionally someone will ask how I first had my work published in the magazine. Many are under the impression that editors choose whose work they want to feature and invite those woodworkers to write for them. For the record, that is not typically how an author gets a foot in the door. Editors, especially in the wake of massive changes to the economics of publishing due to the internet and the Great Recession, are spread exceedingly thin. The editors I know at Fine Woodworking and other publications have their work cut out for them – and how. Many today are juggling responsibilities that used to be handled by several colleagues, while striving not just to maintain standards – in the caliber of the work published, along with the writing, photography, editing, and production values – but to elevate them.

Fine Woodworking has received some criticism over the past few years for the dearth of images of women and people of color on their pages. To some extent, this criticism is warranted; too many issues give the impression that woodworking is still the province of white men, while in reality, woodworkers are all over the map. The real-world diversity of woodworkers should be represented. Woodworking is no longer a white men’s club.

On the other hand, some of this criticism is unfair. While I’m not on the staff of the magazine, I am occasionally privy to conversations concerning this issue, based on which I can say that *the primary reason for the relative absence of women and members of other demographic groups on the magazine’s pages is that we submit fewer proposals.*

So here’s a word or two about proposing an article. Proposals take some investment. If you’re serious about getting your work published in a magazine, you first need to familiarize yourself with the publication. Does your work (and here I’m talking about the work, not the maker of it) seem like a good fit? Also, variety is important to readers; I’ve lost track of how many people have said they cancelled their subscription because they “didn’t need another article about sharpening chisels,” a jab that always annoys me because the magazine and its online branches contain so much beyond basic techniques. So if recent issues have featured project articles on floating table tops, glazed finishes, or chairs, you should probably come up with a fresher subject.

Keep your proposal succinct, and make sure the scope of what you’re proposing is clear. Always respond promptly and courteously, as you would in any business correspondence. And cultivate patience, as well as perseverance. I wrote my first proposal to Fine Woodworking around 2001. It was rejected, as were the next few I sent in. One day I heard from then-editor Karen Wales that the magazine wanted to publish a two-page spread on my Edwardian hallstand; it appeared in 2003. Since then, I’ve had plenty of proposals rejected by Fine Woodworking and other publications. But some find their way into print. Want to see more women and their work on the pages? It’s up to us all to put in the effort to make that happen.

We’re *all* busy. Sometimes we just don’t have the time or bandwidth to sit down and do the work that even a simple article proposal requires. We can still encourage others to propose their own, as well as talk to tool manufacturers, reps at finishing products companies, and other advertisers about the importance of including women and other under-represented groups in their ads.

The Instagram posts are below, in case you’d like to read the comments and add to them.

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Fine Woodworking and Women’s History Month, Part One

Fine Woodworking editor Anissa Kapsales

The editors at Fine Woodworking offered me the opportunity to commemorate Women’s History Month with a week of daily posts at their Instagram account. Because that platform doesn’t allow for texts as long as mine (don’t judge!), we had to split the text into multiple posts. I’m sharing the content here because it’s easier to follow an argument when the whole of it is laid out in one place. Full disclosure: I’m being paid for the Instagram posts, but I agreed to the assignment because (1) I value the work done by the people at Fine Woodworking, (2) this topic matters to me, and (3) the editors expressly gave me carte blanche to share my thoughts, with no expectation that I would promote their company’s products.

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As a woman who has made her living primarily as a cabinetmaker since 1980, I’ve seen a lot of changes. When I did my training in traditional furniture craft through the UK’s City & Guilds program, I was the only woman in the class. That lone-woman standing stuck with me at other workshops until 1987, when I hired on at a progressive company, Wall-Goldfinger, in Vermont, where I was one of several women on the shop floor.

There were women in the field centuries before our time. One well-known example that will be familiar to readers of the blog at Lost Art Press is Frenchwoman Juliette Caron, who was born in 1882; Lost Art Press research maven Suzanne Ellison has unearthed scads of information and fabulous images of women working wood centuries before then. True, women have constituted a small minority among woodworkers. Yet our visibility (beyond the genre of tool-promoting girlie posters) has been disproportionately lower than that of men.

Until about the past 25 years, women were rarely seen in woodworking publications. For me, Aime Ontario Fraser was the most visible, thanks to her work with Fine Woodworking, to which my partner and I subscribed; I’m pretty sure I also recall the Rockler company publishing images of women working (not just watching their husbands do so) in their catalogs going back to the early 1990s.

There are a number of reasons for this relative invisibility, the most damning among them concern that publishing pictures of people who didn’t fit the stereotypical image of woodworkers might diminish a publication’s credibility. We can no longer afford that kind of thinking.

Some have worked to correct this glaring lack by publishing magazines and books aimed specifically at teaching skills to women. While these publications have brought more women into the field, their single-minded focus on women set them apart from the mainstream conversation. Projects were often simpler, which left them open to derision from those with more experience, most of them men. There is without doubt a need for women-focused classes and publications (in addition to those that appeal specifically to members of other underrepresented groups), and it’s crucial to acknowledge that these women-centered projects have enabled many to level up with men, gaining a voice that’s now strong enough to cry foul on the lack of representation. But we also need to be part of widely-respected publications – and those have historically been dominated by men.

All branches of social media have their drawbacks, but their potential to give voice to those who have been relatively voiceless is a strength. Instagram, in particular, has made it possible for anyone showing their work to say “I’m here too. And maybe there are more of us.”

The number of women in woodworking has exploded over the past 20 years. Editors of many publications, including Fine Woodworking, are making a point of including women and our work. Some are doing a better job than others. There’s plenty of room for improvement. Not only is this visibility long overdue – the dramatically greater percentage of skilled, creative women in woodworking argues for representation proportionate to our actual numbers – it’s also plain good business. It’s no longer news that women constitute a significant market for publications and their advertisers’ products.

For me, the most ironic recognition of women’s potential value to the field came several years ago from a carpenter with whom I was working on a jobsite. He said he was thinking of naming his company “Venus Woodworking.” Venus was a family name, and he thought he’d get more business if people thought he was a woman. I was speechless at the irony, but now I have regained my voice.

The Instagram posts are below, in case you’d like to read the comments or add to them.

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To your health

Before the whipped cream.

I keep hearing from people who seem to be picturing me on or near my death bed, people with pity in their voice or dire warnings about how “intensive” my road is going to be. Yeah, got those memos; I have never understood why some people imagine that emphasizing the dangers of a friend’s medical condition is going to help that friend. Does anyone who has received a terrible diagnosis not appreciate the gravity without having to be reminded by others who supposedly care? That question is rhetorical; just keep those thoughts to yourselves and you’ll be doing a lot more good than you will by voicing them.

I am grateful to report that things are going well. I feel great on most days and have been getting plenty of work done. For those who keep asking whether I am “making sawdust,” I’m making far less of it than usual — not because I’m physically or mentally impaired, but simply because my white blood cell counts are so low that I’m at increased risk of infection from the cuts and scrapes I get any time I’m working in the shop (or garden). (OK, that is a kind of physical impairment, but all in all, it’s so minor, and I feel so strong and energetic, that I don’t even want to grant it that standing.) So I am focusing on design work and writing — and I’m very thankful to have kitchen design jobs coming in, thanks to the recent publication of Kitchen Think.

Proof. Lunchtime a few days ago, covered in dust from finishing up some shelves for a set of built-in bookcases.

Early on in my current health adventure I had the good fortune of speaking with Karen Vaughan, an oncology nurse, who has had plenty of experience with pancreatic cancer. Karen recommended a book, The Metabolic Approach to Cancer, among other reading materials relevant to my condition, in response to which I’ve made some sweeping changes to my diet.

I stopped drinking alcohol and eating all wheat products, as well as most grains other than organic oats. A good crusty loaf of sourdough has been one of my great pleasures in life; avoiding bread, brown basmati rice, tortillas, and pasta has taken some adjustment. Lunch used to be a quickly-assembled cheese sandwich. No more! Everything aside from salad requires more thought and preparation. My evening beverage is now a mug of vegetable broth, my favorite being the rich and complexly flavored Bou Vegetable Bouillon Cubes.

I’m burning through recipes for vegetarian Thai-style coconut-vegetable soups and curries and have found some good ones, including this one. A kale salad recipe by Kayte Young, food correspondent for our local NPR affiliate, has become another favorite. I think I use less salt than she does, and I substitute pecans for pine nuts, as well as organic sun-dried tomatoes from a jar for her oven-roasted tomatoes, but that is one good recipe, and kale is so good for you.

Most beans are off the list, but garbanzos and red lentils seem to be OK, as are fermented soy products. The main component of this diet is organic vegetables, most with low carbohydrate content — green beans, green leafy vegetables, mushrooms, some peppers, etc. I am not being super-hardcore; onions, carrots, and tomatoes are too important to me to forgo, and all are higher than ideal in naturally-occurring sugars. Seriously off the list are potatoes and most kinds of squash, along with most types of cheese (other than Parmesan, which I am just not giving up). Plain full-fat yogurt also seems to be OK.

Nuts — almonds, walnuts, pecans, and pumpkin seeds — are all OK, too, so for a special treat I devised a minimalist spin on Bakewell tart that involves an almond crust, a little raspberry fruit spread (organic raspberries being the top ingredient), fresh raspberries and whipped cream. No added sugar. (See “recipe,” if I may glorify it with that name, below.)

So far, my best source of recipes has been Ottolenghi’s Simple. His broiled tomatoes with chile [sic], garlic, and ginger are a real treat.

I’m mentioning diet because I feel so much better now than I felt for probably two years before my diagnosis. Yes, the chemo is proving effective at this point, which has virtually done away with my abdominal discomfort from the tumor. But the diet is clearly playing a big part in how I feel, and that is largely what defines my quality of life on any given day. I’ve had more energy than I can remember having in ages; this is especially notable given that chemo is notorious for depleting energy, in part by causing a drastic reduction in hemoglobin levels. Even my asthma and chronic back pain have improved markedly, though Mark points out this may have something to do with not spending all day every day on a concrete floor in a dusty environment. Hydration is also critical, especially with Folfirinox, the chemo regimen I’m on; I keep track of my water consumption (most of it in the form of tea, whether decaf or not, as water alone has taken on a funky taste due to the chemo drugs) and aim for at least eight cups a day.

So while I would certainly prefer not to be having this experience, I am deeply grateful to feel as well as I do and be able to get so much work done. As for the recipe below, it’s for those in hardcore need of a dessert-like fix. I can’t actually recommend it, though it is a healthy, treat-like substance.

Deconstructed Bakewell Tart

This recipe is so utterly deconstructed that it has nothing to do with Bakewell Tart, beyond the basic idea of putting raspberry-something into a crust.

Crust

1-1/2 cups of organic ground almonds

1/2 tsp. sea salt

3 Tbsp. melted butter (grass-fed, organic)

Mix the ground almonds and butter, then press into a buttered pie dish.

Bake at 350 degrees Fahrenheit for about 15 minutes to toast the almonds, then allow to cool.

Filling

Spread about 1/4 cup of organic raspberry fruit spread over the crust.

Cover with fresh organic raspberries.

When ready to serve, whip heavy cream in a glass or stainless steel bowl set in a large pan of ice cubes. Add sweetener if you must; I am getting used to no added sweetener — and enjoying more subtle natural flavors as a result.

Numbers

Poster by Robert Lachenmann, artist, for WPA. (Courtesy of Library of Congress, “Free to Use and Reuse.”)

People have asked me to do a better job of posting news about the topic that has taken over my daily life, so here’s a bit of hopeful news. Last Thursday I had a follow-up CT scan to the first, on November 12th. The tumor on my pancreas has decreased from 3.8 cm x 2.8 cm to 2.6 cm by 2.1. That’s good news, especially in view of the average statistic my oncologist in Indianapolis quoted when we first met: Just 30% to 50% of pancreatic tumors respond to either of the two available chemotherapy regimens.

In other hopeful news, my CA19-9 tumor marker has dropped from 140+ before the first infusion on Dec. 28 to 28, well within the “normal” range of 0 to 37. I take no good news for granted.

In the cherry-on-top category, my side effects with yesterday’s chemo infusion number four are again astonishingly mild, with peripheral neuropathy (pins and needles in my fingers) being the worst. We reduced the dose of oxaliplatin, which causes this, by 20%, which is still within the range recommended for my body surface area. Having gone through three very unpleasant days on the first cycle, I have come to anticipate the possibility of finding myself nauseated and unable to do more than sit still in Mark’s grandpa’s recliner, waiting for the hours to pass until I can feel “normal” again, though at this point I’m pretty well down with the program (because it seems to be working).

It’s fascinating to see how, even when I feel perfectly chill about going in for an infusion the day before, my body is not. This is not to suggest that I subscribe to a worldview in which “I” exist separately from “my body.” I don’t, and my views on this reflect years of academic study as well as reflection on my own experience. But much of our bodies’ daily experience and work are unknown to our “thinking” selves — stuff like temperature regulation, peristalsis, and other functions of the parasympathetic nervous system. The night before my second and third infusions, I felt an ache in the area of my port and the tiniest hint of an upset colon. Nothing was amiss; my body was simply expressing its concern — or, as I have come to see it, my body is like our dog, Joey, begging “please don’t take me back to the vet!” and deserves the same kind of comforting reassurance I would give to a dog. This time, physical anxiety akin to a racing locomotive showed up at bedtime and kept me from falling asleep. I took one Tylenol PM, which did the trick. And Day Four at the infusion center went off without a hitch. Major kudos to the nursing staff in the infusion department at IU Health-Bloomington Hospital, especially Lori, Pat, and Nicole, along with nurse tech Paulette.

Sunny with snow on the ground

For anyone wondering what’s up with me and my health, here’s a brief update.

Touch wood, things are going well. After my first chemo infusion on Dec. 28, I was slammed — could scarcely get out of Mark’s recliner (the one he inherited from his grandpa, a sturdy late-mid-century thing built like a Humvee) for 2-1/2 days. I’ve always wondered what chemo side effects were like. Of course, they vary greatly — different drugs, different metabolisms. For me, those first two days following the infusion had me feeling as though I was trapped in a steel cage too small for my body and mind, with abdominal pain and mild nausea, a headache (possibly due in part to caffeine withdrawal, as I went cold turkey after years of 4 to 5 cups a day) and unrelenting hot flashes alternating with chills. Miserable.

Pharmacist Cindy Burns says the temperature modulation problem was likely due to overstimulation of my parasympathetic nervous system. Of course there are other side effects, the most concerning of which is peripheral neuropathy caused by oxaliplatin, which makes typing or working in the shop a real challenge unless you are one of those people who enjoy the sensation that everything you touch is covered in sharp pins. (I will spare you description of the effects on my GI tract.)

The good news is that neither of the next two infusions has left me with severe side effects. These last two times I’ve felt alert and energetic. We’ve reduced the oxaliplatin by 20%, which helps a lot. Cindy says the difference in side effects may be due to the particular regimen I’m on, Folfirinox, which causes massive cell die-off in the first cycle. Yuck. I hope she’s right; it’s a blessing to feel so good.

I don’t want to jinx anything but will say I’m feeling better than I’ve felt in a couple of years — startling, given that I have pancreatic cancer and, thanks to chemo, my white blood cell counts, along with hemoglobin levels, are in the danger zone. In view of my immuno-suppressed condition amid the still-raging pandemic, my oncologist, Dr. Karuna Koneru, has told me in no uncertain terms to avoid going into any buildings other than for medical treatment. This means no more mailing of books ordered through my website, where I have posted a note directing people to order “Making Things Work” through Lost Art Press.

Thanks in large part to the success of “Kitchen Think,” I am busy with kitchen design jobs, the perfect type of work for those times when a simple cut in the shop could become infected and cause serious problems, including death, due to my compromised immune system. If my counts are in the Serious Danger Zone when I return for my next infusion, the chemo will be delayed a week and the insurance company will cover the cost of Neulasta, which stimulates production of white blood cells in the bone marrow. (Our insurance does not cover this life-saving drug unless the patient’s life is genuinely and imminently at risk, which strikes me as unfortunate, to put it mildly.)

I’m also making good progress on “Shop Tails,” the book about animals, life, and work that I’m writing for Lost Art Press, and keeping up with regular blog posts. This Sunday morning, thanks to a recommendation by Peter Follansbee, you’ll find a profile of Arts & Crafts chairmaker Lawrence Neal at Lost Art Press, and my next post for the Pro’s Corner at Fine Woodworking will share some of what I have learned about choosing healthcare coverage when you’re a self-employed craftsperson or artist, a topic in which I have now had a crash course.

We’ll let you know when we’re done

Almost there. I’ll return next week to tweak the fit of the doors, add a coat of paint to the upper sections, and install door pulls. One of the customers is a musician; he needed space to store scores, sheet music, cds and books.

Yesterday Mark* and I installed a set of built-in cabinets and open shelves for some customers of mine. The customers, who are 100% on board with pandemic safety protocols, turned down the heating, opened windows, and left the house for the day. Mark and I wore masks the whole time we were inside their house. As we leveled the base cabinets, fitted the 8-foot-long walnut counter carefully between the alcove’s walls, and scribed outlying parts to irregular surfaces — all of it painstaking work involving large, heavy parts, ever mindful of the baby grand piano just feet away — it occurred to me that the job bore many similarities to the endoscopic procedure I’d had two days earlier.

The moving pad and dropcloth visible at left are protecting the highly-polished, flawless piano.

The previous procedure, a pancreatic ultrasound and needle biopsy two weeks before, yielded a tissue sample with no trace of cancer cells. The first academic article I found on pancreatic cancer noted the difficulty of obtaining reliable pancreatic tissue to biopsy, so the inconclusive biopsy was not a surprise. And while it meant investing another day in fasting, driving to Indianapolis, etc., I was glad to have it done in the interest of getting the most accurate picture of what’s going on.

Those facing this kind of endoscopic procedure have reason to feel anxious. It’s freaky to imagine having a tube run from your mouth, down your esophagus, through your stomach, and into the upper part of your duodenum. The point of this post is to put your mind at rest by sharing my experience; when it comes to medical procedures of any kind, I am the Dr. Seuss character in Green Eggs and Ham: “I do not like them, Sam-I-Am.”

The hardest part is not being able to take anything by mouth after midnight until your procedure is over. Food is one thing, but not drinking water for up to 12 hours is a challenge. I prepared both times by staying up until midnight the night before, drinking as much water as I could that day and evening, to ensure I was hydrated. After checking in and waiting, you change into a hospital gown and have your vitals checked. A nurse sets you up with an IV and saline. You meet the doctor and the anesthesiologist (my experiences over the years have convinced me that a weird sense of humor is a job requirement for a career in anesthesiology), so you have a chance to ask questions.

Then a nurse wheels you into the exam room where the anesthesiologist and doctor are waiting. There’s someone to keep an eye on your vitals and a tech to get you ready. Everyone I’ve dealt with has been kind. You’re covered in taped-on monitors, with a blood pressure cuff on one arm and the IV in the other. They set you up with oxygen in your nostrils, stuff a nice pillow behind your back to keep you on your side, and ask you to bite down on a plastic tube about 1″ in diameter that keeps your mouth open while the endoscopy tube is inserted. Just as you’re thinking “how the hell am I going to avoid getting a cramp in my shoulder?” you’ve left the house on a worry-free propofol excursion. Bring in the cabinets and the tools. Set everything up. Transform the alcove (or bathroom, or kitchen) into something you hope will delight the customers — they’re out of the picture, just as you are, with a group of highly trained medical pros watching your every heartbeat while the doctor makes his passes back and forth with an ultrasound “camera,” then inserts a fine needle through the wall of your stomach to get a sample of tissue.

All being well, the next thing you’ll be aware of is a kind nurse saying hi as you return to your senses, a moment echoed two days later, when I texted one of my clients to let her know we were done for the day and her family could come home. I waited until her husband arrived, to make sure nothing went wrong while the front door was unlocked.

Two days earlier, in Indianapolis, I awoke with a vague awareness that I’d been drooling; the nurse mentioned it was bile (lovely); the doctor had also examined a spot on my liver this time. As with the first endoscopy, I had no pain at all, not even the sore throat that is the most commonly cited after-effect. I washed the bile out of my hair when we got home, with plenty of time before I had to give a long-scheduled Zoom presentation for the annual meeting of the San Diego Fine Woodworkers Association.

Ordinarily I would remove any adjacent baseboard and shoe molding, then cut it to fit after installing the cabinets. In this case, the baseboard on this wall ran behind a bookcase loaded with books, so after determining the precise location of the scribe stile’s front face, Mark cut the baseboard and shoe with an oscillating multitool.

The preliminary diagnosis is still adenocarcinoma of the pancreas. We should learn more after the pathologist examines the tissue sample. I continue to feel fine and am thankful for that.

*My husband, Mark, and I each run our own business, but we’ve significantly reduced our contact with others since March in view of the pandemic. As a general contractor whose work is hands-on (as distinct from those GCs who spend most of their time running their business and supervising others), Mark would ordinarily be spending his days in close contact with fellow tradespeople and customers, much of the time inside their homes. A while back we decided that the most responsible way forward during the pandemic would be help each other on jobs that take more than a single pair of hands, instead of working with others.