Some of you will recall the many Christmas “letters” Penny and I sent over the years. Penny was the author of most of them, although I often served as a sort of contributing editor. This post reflects a bit on our first Christmas as a married couple, and all the Christmases since. And since I didn’t get around to writing a more traditional Christmas letter this year, this will have to do.

I recently discovered a pile of old letters Penny and I had written and that Penny’s mother had saved. Most of them were from the year we spent in Heidelberg, Germany, as Fulbright scholars. Each of these letters had a sequential number written on it in Penny’s mother’s distinctive, small, barely legible cursive handwriting. Letter number 13 was written over the 25th, 26th, and 27th of December, 1990.

In Germany, the 26th of December is known as Zweite Weihnachten (Second Christmas). It is a public holiday in Germany, just like the 25th. Many Germans celebrate with their immediate family on Christmas Eve and Christmas Day and then with more extended family or friends on the 26th.

In 1990, we were invited to spend Second Christmas with the Walz family. The Walzes had served as our host family for our first few weeks in the country. We spent the afternoon and evening enjoying some good food, playing games, and lighting the candles on their Christmas tree. One detail I hadn’t remembered until reading our letter was that Penny had gotten a headache while were were there, and took some unfamiliar German medicine, which converted the headache into nausea before both eventually subsided.

In our 1990 Christmas letter, both of us commented on how nice it was that Advent didn’t coincide with the end of a semester. (The semester at the University of Heidelberg ran mid-October through mid-February.) Our Christmas shopping had been completed a couple weeks early, and we spent the quiet days before Christmas relaxing and making various Christmas goodies to share with the Walzes and with some friends from the recently reunified East Germany who were coming to visit for New Years.

Perhaps next year I’ll get to enjoy a more leisurely Advent again, since I’m planning to retire from Calvin University in June.

**

This year we had a different sort of second Christmas – our second without Penny.

I’m sure she would be happy to see that many of the family traditions continue. Christmas trees, gifting, food, games, and family have remained key elements of the Pruim Christmas celebrations.

For years we did our family gifting on St Nicholas Day (December 6). Our St Nicholas Day celebrations became less elaborate as the kids got older and it was no longer possible to gather on St. Nicholas Day. But even in recent years, Penny enjoyed finding small gifts (usually including chocolate and toothbrushes for everyone), and we enlisted the Amazon elves to help us deliver St. Nicholas Day surprises, even though I don’t think we ever tried to add to our delivery instructions, “Please unbox and put in the shoes left by the door.”

In 1990, I found a small, table-top artificial Christmas tree in a Heidelberg department store. We decorated the little tree with a few handmade ornaments. That tree served as our Christmas tree through the rest of graduate school. While we were living in Providence, we began our annual day-afer-Thanksgiving hunt for a live Christmas tree. That tradition continues, but we put the tree in Andrew and Hannah’s house this year. Once again a small artificial tree graced our living room this year. This year’s annual ornament gifts were repurposed jewelry that I had purchased last January while in the Dominican Republic.

Our children were never introduced to Santa as anything but a silly holiday story, and they have been active participants in gift-giving for as long as they can remember. Games and gifting had an interesting juxtaposition this year when Nik, Maia, and Jason discovered that they had given each other the same game (Slay the Spire). They celebrated by playing it until 6:30 am, honoring another Pruim family tradition: staying up late.

Most of the rest of Christmas week was an alternation between eating and playing games of various sorts.
I had again made cinnamon stars, a traditional German Christmas cookie that we made for the first time in Heidelberg, following the recipe in a book that Frau Walz had given us. Other favorites included homemade pizza, omelets, pancakes, and a ham dinner with mashed potatoes, veggies, and biscuits.

The biggest difference, of course, is that Penny is no longer here to share in these traditions, to invent new ones, or to retell stories from Christmases past.

Christmas two years ago was a delicate balancing act with Penny trying to do and enjoy as much as she could of what she was pretty sure would be her last Christmas without exhausting her limited supply of energy. On Christmas day, Penny attended church for the last time. She had the idea that we should sing a duet to open the service – probably the first time we had sung since her cancer diagnosis. Too weak to stand, she sat on a stool as we sang a version of What Child is This?/Child of the Poor.

The next couple of days were more difficult: a trip to the clinic for IV fluids and nausea meds, no food for 48 hours, and the start of radiation treatments on December 28.

Despite her health issues, Penny still managed to prepare little gifts and cards for a number of her friends with the following note attached to each one:

Hoping, reflecting, thankful, friendships.

Those words seem to fit as well this year as they did then.

Wishing you all a blessed New Year in 2026.

Penny’s leaving left many things unfinished. Some of these I knew about.

The sheer volume of yarn could not be hidden and … unknit gloves, mitties, socks, sweaters, and scarves. Some of the yarn is remnants of past projects, but much more was a stash waiting for future inspiration. An entire roughneck bin is now filled with projects that were started but not completed. Most of these had been discovered in bags in nearly every room of the house – ready to be grabbed and resumed at any moment, needles and stitch counters waiting for her hands to take up the project again. Another bin is filled with yarn that was found near a pattern – projects planned, but not yet started. There were boxes of yarn that had arrived in the mail and had no indication of the intended use. Even more yarn organized by color or type. Still more she had already given away. Anyone who knew her well knew that there was unfinished knitting.

Cancerland was not the only unfinished writing project. Two more cookbooks were in progress. One she was really hoping to finish, but in the last months she simply didn’t have the energy and focus it required. Taking a look to see what would be required for me to finish them is on the to-do list, but I haven’t gotten to it yet either.

And there is the giant unstarted painting of our dog, Tasman. She and a friend were planning to paint their dogs at a place that turns a photo of your dog into a light outline and teaches you how to turn it into a painting. I think she had to cancel the painting session twice, and then she had them give her the painting supplies so she could paint it little by little at home. She watched some training videos they sent, and investigated the paint colors she had to work with, but never had the energy to paint.

Combining art and writing were the cards. Sometimes she would make cards in advance, figuring there would come a time to use them. More often she made them for a particular person and moment and sent them immediately. But I found a handful of cards – often tucked into an odd journal or knitting bag, and a couple of addressed and stamped envelopes that were not next to any particular card. I also found a pretty impressive stash of purchased cards. She hadn’t been using them much in recent years since taking up making cards herself. No doubt, she would have sent many more cards had their been more time.

Last week I found another stash of gifts. Penny liked to accumulate things that she thought might make good gifts. Sometimes she had a particular person or event in mind, some times not. I suspect I’ve not yet found all of them.

Some unfinished things I did not know about. The most interesting one was a journal that was to become her “100 PAGES Project.” She began it shortly after her father died of cancer in 2010, more than five years before her own diagnosis. This collection of “reflection, whimsy, and ¿wisdom?” was written for “my children & grandchildren & other curious, compassionate readers (you know who you are).”

Here’s a sample page (the original was hand-written):

When Grandpa Dykstra passed away, he left behind lots of things, like 2 walkers, several pairs of big shoes, unopened packages of white undershirts (because Grandma stoked up at sales), and because he was a pediatric surgeon – lots of healed and healthy people.

As we start to sort the closets and shelves, I hope we find something like this book – a way to glimpse what Grandpa thought and felt and wondered about. I’m not counting on finding such a treasure, but I can hope AND I can begin my own 100 PAGES Project – a collage of bits of life – feelings, thoughts, and wonder – something to help the kids remember together. So, no arguing about who gets to or who has to keep this book.

LESSON #1: SHARE

The 100 PAGES Project has fewer that 20 pages. I’m not sure what interrupted her, but I can guess. Penny’s mother was scheduled for heart surgery the week after her father’s funeral. The surgeon pushed the surgery back another week, but didn’t want to wait any longer. During several months of post-surgical complications and time in and out of the hospital and rehab, Penny visited her mother every day, on top of work, family life with three kids and an exchange student, and everything else we had going on. I’m guessing that left her less time than anticipated for this project.

Some of you may wonder how much of Penny’s attitude and outlook were shaped by her cancer diagnosis. I think that the answer to that is very little. The first page of her 100 PAGES Project describes a pre-existing disposition that she maintained throughout her time in Cancerland.

WALK with purpose. RUN freely. WALLOW in the joys. BREATHE deeply.

Create moments and days and works of hand that bring COLOR & TEXTURE & MUSIC to the journey.

DO those things NOW that will allow you to LOOK back at a sensual, intricately detailed, Soulful Landscape of life. A Place where you would long to be again, were it not for the beautiful possibilities that lie ahead.

Of course, cancer did change some things. There were times when walking was difficult, running impossible, and breathing deeply was challenging. She always tried to wallow in whatever joys were available, but there were days when joys were harder to find. When she wasn’t able to create works of hand, and when days were too long, she focused on moments and continued to look for ways to bring color and texture to the journey – even when that just meant having me bring a colorful blanket to the hospital to liven up the room a bit. When now was hard, she continued to look for beautiful possibilities ahead.

Cancer also brought with it lament. Lament for things that were no longer possible, for conversations that would not happen, for hospitality that would not be extended, for grandchildren she would not meet (and spoil), for gifts that would not be given, for the adventures in all of our lives that she would not get to share in, or hear tell of, or write about.

For all the things that would forever remain unfinished.

This poem was in the same Word document as the previous two posts. It appears to have been written in September 2018. Chemotherapy had resumed in August. Periodic checks of carcinoembryonic antigen (CEA) levels had shown a predictable exponential increase – doubling roughly every 100 days – so we had known for several months that this was coming. (You can read more about CEA here and here.)

Cancer. Recurring.

Chemotherapy. Again.

My hair has started to come out. When I shampoo. Handfuls.

Longing for health. Out of reach.

Fading. Tired. Worn.

Anemia. Dehydration. Hospitalization.

I’d be throwing up if it weren’t for the meds.

Stomach cramping most evenings.

I can’t get a good night’s sleep.

Mourning. Donning another day. Alive.

“Living on borrowed time” is a stupid idea. Like I’m supposed to be dead already. As if I’m lucky to still be alive. I am supposed to live a long life. We all are. You’re born and you get a right to a reasonable number of years. That’s why murder is a crime. Cain and Abel. My time isn’t borrowed. It’s been stolen.

So my blood will cry out from the ground. But no one will be judged. No one will be cursed or put to death. No one else. The irony: I feel like I’ve been banished. To Cancerland. Where there is weeping and gnashing of teeth. It’s me. I have been sent there until I die. I can’t blame anyone else. What do they call that? Victim something – when the victim blames herself.

Blaming God is heresy. Blaming the devil feels like a cop out. There’s no one else to blame except myself. For not demanding a colonoscopy at the first sign of irritable bowels. For not obsessing about my gurgling gut. For not eating more fiber. I should have been hypochondriatic. What could have happened if I had whined more, been more narcissistic, or threatened to sue. I hate living in a reality where those bad adolescent behaviors might actually get rewarded.

In the end, the blame game doesn’t get you far unless you somehow have the power to execute judgement, payback, or settlement. My well-meaning Christian friends tell me the Psalms are mostly about lament. Complaining to God. So, I’m going to side-step blame for a while and voice some complaints that everyone wants to say but nice folks usually don’t. Because we don’t dare. We don’t want to be remembered as whiney and self-centered. Am I the only one who really feels this way? I guess I’m just not as pulled together as those Christians who can end their care-blogs with #heavenbound or #peacethatpassesallunderstanding.

Being at the center of Stage IV is, pardon the pun, not the role I auditioned for. Cooking, caring, tucking in blankets, encouraging – that’s what I’m supposed to do. I’m good at it. At least I like to think I am.

My husband, whose grandfather died of a heart attack at 50, was supposed to get the sick person role. He’s much better at dealing with pain and discomfort. He’s matter-of-fact and doesn’t over-think himself into tears over the philosophical or theological issues of WHY or How come. Of course, I don’t WANT him to be sick. But whoever did the casting got it wrong. Are you listening, God?

My last surgery lasted more than nine hours and was indisputably maximally invasive. I got sliced straight down the middle from breast bone to pelvic bone. They would have made an even longer incision but they ran out of soft tissue to cut. The surgeon inspected everything by touch. All the bits and pieces that had cancer on them got removed, including carefully cutting away segments of the peritoneum (the lining of the abdominal area). Then they pour in a hot chemotherapy liquid and sew you back up. Then, I’m not joking, they shake you around for 90 minutes to make sure the chemo gets sloshed and squished all over your insides. Then, you can guess what comes next, they cut you back open again and somehow drain or suck out as much of the chemo goo as they can. This is called a HIPEC. You can google it. And since they aren’t going to keep you in surgery for ever, they do sew and glue you back together again. It took me six months to recover from that surgery.

At my last appointment, the surgeon indicated that cancer is growing again. A spot on my liver and probably some small areas in the peritoneum. In all likelihood, I will need to have this surgery again. Some people have this surgery 3 or 4 times. This is the cost of life. Of living longer. Six months of misery for … I dunno … 2 or 3 more years of life. This is my horizon. Really: this is what my best hope for a future looks like. THAT is so unfair. Are you listening, God?

And how is this fair for my husband. He’s a good one. He’ll stick with me for better or worse, in sickness and in health. But there has been and is going to be a whole lot of “worse” and “sickness.” Is that fair to him? I don’t think so. Are you listening, God?

More than one good friend has told me that I accomplish more in a day than others in a week. I like that feeling of productivity, accomplishments, checking projects off my list. I have a long list of books I still want to write, courses I want to teach, projects I want to pursue to help groups of people understand refugees and immigration issues, build capacity for engaging across lines of difference, think deeply about being Christian in the 21st century. Aren’t I worth saving? I mean, at least as much as the next guy? But really, I could produce some really helpful stuff if I weren’t sidetracked by warding off my impending death. It’s not like I’m just working to put food on the table, have an occasional beer with a buddy, watch football on the weekend, and go back to work on Monday. I have so many bigger things I want to do. Still. Are you listening, God?

I measure “good use of time” also by the quality of my friendships including with my own children and their significant others. I am proud of my children and the relationships our family has with each other. Two of my children have found wonderful others to share their lives with. I’m planning on being at both their weddings, even if it’s in a wheel chair. Last week my youngest Jason cornered me with another one of his really huge bear hugs. “You have to be around for my wedding, too, Mom.” What could I say? “I’m making a concerted effort.” My youngest son wants me to see him graduate. He wants me at his wedding. Are you listening, God?

We’re the opposite of the dysfunctional family. I’d almost call us “geeky-functional.” Why can’t you zap someone who doesn’t have family relations to get in the way of dying. There are folks who say they couldn’t care less what their father thinks, or that their estranged brother doesn’t show up for the family reunion, or whether so-and-so falls off a cliff. My family belongs together. We need each other in the most healthy of ways. Cancer is shaking this family that has time and again taken others in, offered a home or temporary home-base for folks who needed some love, who needed a really good family to surround them. We want to continue to offer bed and food, friendship and compassion, hope and love to folks who need it. But we can’t do this very well with the threat of maximally invasive surgeries looming. Are you listening, God?

How can a dead person live for you? How many prayers would it take to sway the hand of God? You are all-powerful and could do something if you wanted to, right? So, why don’t you do something?

Are you listening, God?

In addition to writing, Penny liked to “doodle”. Many of these were responses to songs or scripture. I’m not sure when this one was created, but it fits the theme of lament.

My last post was in mid-April, just as the semester was winding down and I was getting ready for a trip to the Dominican Republic. I returned from that trip just in time for graduation, and then immediately launched a new online course that kept me too busy to spend time on a blog in May and June.

I’ve been deferring a number of activities and decisions “until July”, which really meant until grades had been submitted and I had the first pause in my academic schedule since last September.

One of the items on that list is this blog.

Another is dealing with Penny’s things.

Yesterday, these came together.

The first things I dealt with last August were the boxes and boxes of medical supplies that had accumulated during Penny’s treatment, and especially during hospice. Fortunately, a friend offered to help and found an organization that could take them and put them to good use. I doubt she realized when she offered that it would take multiple trips just to transport everything away, but she didn’t rescind the offer.

Most of Penny’s clothing found new homes last fall. It was clear I wasn’t going to be able to use them, and I was happy to find new homes for them among family and friends who were similar in size and style. It was a relatively easy and safe way for me to begin the process.

Over Christmas the kids went through some of the jewelry, art supplies, and a few other special things, but most of the rest remained largely untouched while I dealt with the day-to-day.

By last summer, Penny was no longer healthy enough to pack up her Calvin office, so her colleagues packed up her things and brought them in boxes. There were a few things Penny was interested in having us help her locate, but mostly the boxes sat in the garage for awhile until we moved them to the house, where they have they have been waiting for me ever since.

We stacked them in the home office until I broke ribs last October and needed access to the hospital bed that was also in that room. My son hastily moved them to a different room so I could shuffle to and from the bed without causing further injury. After I had recovered, we moved them back – even more helter skelter than before.

Over the last ten days or so, as time has allowed, I’ve begun the process of opening boxes and bags and drawers and closets. Some of the things I’ve found were expected. I knew I would find many journals and calendars that Penny had kept over the years. I dedicated a shelf on a book case for these, and each time I found one I added it to the shelf.

I knew I would find supplies for making cards. I didn’t realize just how many different pens, markers, pencils, paper, cardstock, envelopes, tape, glue, etc. I would would discover. I also didn’t realize how many cards that she received had been saved (in several stashes, or sometimes tucked in amongst other things). These have all be collected into one of her fancy boxes for safe keeping.

Then last night I came across a stack of folders. Inside the folders were things she had written. In a green folder was an essay entitled God from Stage IV. Tonight I did some digging on a hard drive to see if I could locate the source file. It appears that Cancerland was volume 1 of a planned three-volume collection of essays. I’ve even found the tables of contents for volumes 2 and 3:

• Volume 1: Cancerland

• Volume 2: God from Stage IV

  • life from Stage IV
  • the chief end of man
  • not a hair from your head
  • about prayer
  • control and influence
  • wrangling hope
  • a response to Kate Bowler
  • anger and lament
  • the God of loose ends
  • exit stage right

• Volume 3: Life is too short for bad shoes, and other things I’ve learned while dying

  • life in ALL CAPS
  • purple ink
  • 100 units of time
  • de-skunking the dog
  • those stupid hummingbird feeders
  • red shoes
  • my favorite annoying sayings
  • impatiens, tulips, hostas, and dandelions
  • this is your brain on cancer
  • Dr. Strange
  • one of these things doesn’t belong

I haven’t been able to find these essays, unfortunately. And I don’t know whether they were written or only planned. To add to the puzzle, the printed version in the green folder has two sections with titles God is dead and Living on borrowed time. Neither of these is in the table of contents, but a version of the first part of God is dead appears to be an introduction to Volume 2 in the document with the tables of contents.

So I’ll do a bit more digging, and likely there will be at least one or two more posts with Penny’s writing coming – perhaps more if I’m able to locate more.

It’s less clear whether this was written before or after her mother’s death in July. That may well be the reason it isn’t finished. In early July, Penny’s mother transitioned to hospice in our home. In mid-July, as Penny’s mother was failing, Penny ended up in the hospital for about 10 days. Her mother died before Penny was able to return home.

Despite its brevity, it gives a good sense for how Penny chose to live in Cancerland for the next seven years. It explains how there could be people that probably only knew her as that person with cancer on the prayer list, while others never knew she had cancer. It’s the reason that eight and a half years in Cancerland were highlighted with so many good memories, and so much creativity.

I know folks who have had cancer and been for all intents and purposes cured. Their stay in Cancerland ended and they now live back on the outside. When I was first diagnosed with stage III colon cancer, more than one person told me of friends and family who had received the same diagnosis and treatment and who had been given a clean bill of health – an exit visa. Even after the second more dire stage IV diagnosis, one well-meaning person told me of all her friends and relatives who had survived and been cured of colon cancers. She meant well, and I tried to take it for what it was: an attempt at encouragement. I guess there is a small chance that my cancer will never return, but that is unlikely. I might hope for the unlikely, but I live with the reality that I reside now and for the rest of my life in Cancerland.

I live in Cancerland with those closest to me. They are not exiled or imprisoned in this place, but they choose to sojourn here with me. Their experiences and perspectives are part of the air I breathe. Their voices echo in the woods.

Once you are a permanent resident of Cancerland, the only way out is death. What’s more sobering, in Cancerland I can count on the fact that in the time between now and death, I’ll face again some serious pain and suffering. I don’t know exactly what that will look like: surgeries, chemo, radiation, all of the above.

If those are the big events and focus of my life in Cancerland, if those are the only trees that populate my horizon, that makes for a pretty gnarly, ugly forest. So, for as long as I can, I want to plant and cultivate beautiful, good things so that as I live with cancer and when I look back at my time in Cancerland the forest has a character and appearance shaped by much more than the sorrows of disease. I shall rest in the shade of strong trees, watered by hope and encouragement. If you visit where I live, you shall find small patches of flowers and groves filled with sunshine and sweet music. And there shall be dancing too, dancing for joy.

This February I got to hear my daughter in concert as a featured soloist with the St Olaf Band. As the last low notes faded, one of those tingling pregnant moments of silence filled the auditorium before the audience burst into applause. I fought back tears, not because the music was so lovely, though it was, but because I had feared I wouldn’t make it to that concert at all. When she was asked to solo on tour in Florida with the band, we had dreams of going to hear her. Florida in January sounded like the perfect thing to look forward to after surgery. But the weeks of slow recovery turned into months with the slog of medical appointments, medication adjustments, battling constant nausea, fatigue, and the physical challenges of healing from a huge abdominal surgery. We never felt that we could book those flights to Florida, our window of opportunity closed, and I saw myself relegated to listening to the livestream heard through mediocre laptop speakers.

Our last chance was the home concert – a week after returning from tour, the band would play their entire concert back on campus in Minnesota. Thankfully, everything worked out: the mid-west snow storm didn’t happen, the meds aligned so that I was both alert and not feeling nauseous at concert time, and there was no ostomy bag explosion the entire weekend. On a cold Saturday afternoon, I sat happily and gratefully enjoying each soulful note from my daughter’s clarinet.

Life is like that now: closed doors and small victories. Many of the assumptions, dreams, and hopes for my future, especially the far away future, lie behind closed windows or doors. I’m one of the folks who wants to live to be 100. I’ve got a long list of things I want to do, including learning Chinese, living for a month each in different cities and countries around the world, not to mention finally figuring out how to use that loom I bought ten years ago at a going-out-of-business sale.

Then there are those hopes for the future that many of us have. Nurturing relationships with grandchildren. Enjoying big family reunions. Watching children settle into rewarding careers, relationships, and life journeys. Retirement years filled with volun-tourism, writing projects, and relaxing sunsets. I may get a chance to venture there, but I very well may not.

Am I okay with that? No. It sucks. Do I have a choice? No, and that sucks, too.

At one point last autumn when the twelve cycles of chemotherapy were behind me but blood work indicated cancer was growing somewhere, I got the results of a scan that indicated that there was no cancer on the ovaries. With a sigh of relief, I placed an order for yarn – lots of yarn and a pattern to make a blanket. It seemed like I had been granted a bye – the worst had been averted and I could ponder and hope for the chance to embark on and complete a big project, like a knitted blanket. i

Not long after the large box of project supplies arrived, we got the bad news: the cancer was back with a vengeance. I had a year to live, if that. The only hope was a pretty radical, aggressive, miserable surgery. The box sat unopened for months in the corner of our bedroom, a reminder of a hopeful moment and some harsh realities. I’ve since opened the box and put the yarn and the pattern in a storage drawer, still not sure how I feel about that particular purchase and project. Do I wish I’d never bought that yarn? I guess not. Moments of hope pull us through.

But are moments of hope enough? I’m now in remission. Four times a year, the doctors order blood work and a CT scan. When the results come back negative, I get a little giddy. Time to order supplies for another project. But in another three months there will be another scan, another result. In some way, I’ve lost that ability to dream big. Why invest generously in my retirement account, or buy into a time-share, or purchase all the yarn needed to knit each child a blanket? We’ve been told to expect the cancer to return. According to some study, sixty percent of folks have a recurrence within five years. That means 40% don’t, right? But I don’t play the odds anymore. I wouldn’t know how to place my bets.¹

In those days between my dire diagnosis and the big terrible surgery, I would burst into tears thinking about all the things that probably wouldn’t be part of my future, all the closed and closing doors. I suspect that’s normal. Grieving and lament for the losses is a part of Cancerland that I think every resident experiences. Before and during recovery from the second big surgery, we seemed engulfed by the Kingdom of Grief and Lament. Sunnier parts of the world could only be glimpsed from a distance, if at all. I wanted to be angry, but I didn’t know whom to be angry at. And, honestly, I didn’t have the energy to be angry. A shower in the morning would wipe me out until mid-afternoon.

I’m still very aware that tears of lament have seeped into other parts of my life. I hesitate to outline work projects farther out than a year. I work to tame the selfish child in me that wanted to travel and have fun this summer and not stay at home caring for an ailing parent. I get frustrated at the fatigue that sets in when I still have so many things I want to accomplish in a day. I’m sick of the constant adjustment of meds and diet in an as yet unsuccessful attempt to get some normalcy back. And I hate needing to know the location of the nearest toilet in every public and private building I spend time in. Some days I am painfully aware that I wear tear-stained clothes.

•

I don’t have a solution for the ongoing lament, because the potential losses keep coming. They’re almost endless in a way. My friends return from a vacation biking around the Netherlands, just the sort of trip I might have enjoyed. Other friends are planning a trip to China while their daughter is studying there; China used to be on my bucket list. Two girlfriends enjoyed the weddings of their children in the same summer; that door isn’t closed but it isn’t wide open either. When I look that direction, some of the watery images are of weddings without me there at all.

No solutions. I think I live with the garments of lament hanging prominently in my wardrobe. But now six months out from our first news of remission, I no longer dwell in the Kingdom of Grief and Lament. I’m a permanent resident of Cancerland for sure, but I’m exploring other kingdoms within reach, enjoying both sunshine and rain. There are days when I choose to wear the soft colors of hope, when I can share smiles and joys, tea and tears with friends and family, when I can start knitting a scarf for my son or savor the sweet notes of my daughter’s clarinet solo.

I don’t have a choice about my resident status in Cancerland. I may not be able to open certain doors in the future. But I do have lots of choices, choices about what I do where I am. I can stand in the rain to hide my tears. I can also carry an umbrella, jump in the puddles, and enjoy a hot cup of tea afterwards. You get lots of metaphors for this precarious, frustrating, and still wonder-filled life, because I don’t have answers and solutions. I’m just muddling through.

No, change that. I’m carefully choosing a path, a journey worth taking. It’s not the one I had in mind 18 months ago, but despite the losses and the lament, and perhaps in part because of those experiences, the journey will be filled with as much good as I can find. And each good morsel will linger sweet like honey.

CEA (Carcinoembryonic Antigen) is a protein that in some people responds to the presence of certain cancers. This was the thing that was alarmingly high after the first round of chemotherapy in Summer 2016. Normal levels should be between 1 and 5. Penny’s measured 30 immediately after chemotherapy and increased rapidly from there. It was over 75 by the time of the Big Surgery that November. Post surgery it dropped to 1. That and the judgement of the surgeon landed Penny in “remission.”

Every three months CEA was checked. Every time it was higher. I gathered data and fit a model: the CEA level predictably doubled about every 100 days – 2, 4, 8, 16. We could see where this was heading, and by Summer 2018, it was time to resume chemotherapy. The week before chemotherapy was to begin, we took a short vacation in southwest Michigan. Nothing like the bigger travels we had always looked forward to, but some time away, to do some fun things.

On our way home we picked up Tasman, our “therapy dog.”

Taz adapted quickly to her role, staying close to Penny as she went through the unpleasant days of chemotherapy.

Three weeks later, Penny’s good friend Lynne came from Providence to spend some time. The big event was to be a trip to a fiber arts festival and some weaving lessons from Lynne. I remember getting a call from the fiber arts festival asking for some dimension of the “little loom”. And then another saying they were returning early because Penny wasn’t feeling well. Penny ended up spending the rest of Lynne’s visit in the hospital with a bowel obstruction – but not before Taz did her best to bring some comfort.

The weaving lesson had to wait until another visit some years later. Penny never graduated to the big loom we had gotten at the going out of business sale. We gave that loom to Lynne the last time she visited, and she’s working to restore it to its previous glory.

This is the TMI essay that Penny hinted at in several previous essays. For those of you who really don’t want to hear about this stuff, you can stop here and wait for essay 11, or you can just skip over the second paragraph. As it turns out, this essay isn’t really about providing you with TMI about her situation as much as it is about how to manage information sharing.

I remember feeling miserable after surgery. When they slice you down the middle, the stomach muscles get very angry. Moving and doing anything hurt. The worst sudden seizing pain: sneezing! We won’t go into pain numbers again.

After such surgeries, you progress usually along the following diet steps: ice chips clear liquids full liquids pureed foods soft foods normal (with some permanent dietary restrictions). It shouldn’t surprise anyone that your output mirrors your input: your poo doesn’t come out in ice chips but it does takes a while to get back to anywhere near normal. I’ve lived with different amounts of my digestive tract removed and with an ileostomy (a loop of small intestines brought to the outside of the body to empty contents into a bag secured to your abdomen). So, I could write about poo management, the seven types of poop, poo bag explosions, super sore bottom sides, and raw ileostomy sites that burn like second degree chemical burns when any digestive output comes in contact with the broken skin which it inevitably does because -duh- it’s an ileostomy site. For long phases of my cancer journey I’ve battled these and numerous other issues related to poo. It stinks figuratively and literally! And I’ve had precious little opportunity to vent about it because all such bowel-related issues are pretty much on everyone’s TMI list. There’s just no pleasant way to talk about such things with anyone but the best of friends. So, rather than go into any more sordid and yucky TMI details about the battles with my bowels, I think it would be more helpful for more people to focus on how to navigate TMI – too much information – and deal with information management in general.

In short, everyone needs someone to know as much information as possible, but otherwise: less is more.

You need someone who knows your history, your allergies, what your pain numbers mean. When you are in surgery, knocked out by pain or by pain meds, or unable to talk because there’s a nasty NG tube stuck up your nose and threaded down the back of your throat into your stomach, someone you trust should be there if at all possible. It’s advised to actually have a person or two selected to be your official patient advocate. There’s a form for that and any hospital will provide it for you to fill out and sign. If you are that go-to person or patient advocate for a sick someone, I’m sorry but you have to buck up and do your best to answer all the questions, keep track of details, and listen to TMI descriptions from aches and pains to the consistency of poo.

Sometimes a spouse, child, or sibling is the obvious choice to be a patient advocate, but sometimes there’s isn’t an obvious person and you may be in a position to step into that role. One of my friends ended up being that person for a colleague at work. The colleague had some family but they were overseas. He had no significant other and desperately needed that go-to person as he battled cancer. My friend was amazing, responding to midnight calls for help, tending him bedside during the last days, taking care of paperwork, organizing his memorial back in his home country. If you are at all close to someone who doesn’t have an obvious patient advocate, walking along side that person and being their advocate is one of the most compassionate acts of service to a fellow human being that I can think of.

Whoever is your patient advocate needs to know as much as possible. For this person, there isn’t any TMI. In contrast, for almost everyone else the TMI border is easily crossed, though everyone has a different amount of information that they deem acceptable to share or hear. My advice to both the patients and to their friends may seem contradictory, but the guiding principle for both parties is to put yourself second and the other person first.

When someone has a baby or gets sick, the folks around them (friends, family, co-workers, faith communities) often try to help. Years ago when the wife of one of my colleagues was battling breast cancer, I popped into his office and asked if I could bring them a meal. He thanked me for the offer. “We have a lot of food right now. We don’t know what to do with all the leftovers.” He laughed. “Someone should write a book one day called: If Cookies Could Cure Cancer.”

“Well,” I smiled. “Let me know if we can help somehow.” But like so many of us when we say that, I had nothing specific in mind just then and my colleague never asked me for anything particular either. Then one day as I was trying to get my own children’s lunches packed, I had a lightbulb moment. That next weekend I baked double batches of cookies and brownies, wrapped them in lunch-size servings, stuck half of them in my freezer, and brought the other half to work. Between classes I marched them over two doors to Herm’s office “Hey, I thought I’d give you the gift of some extra time.” He stopped typing and looked curious. “Here’s two batches of ready-to-pack lunch snacks for your kids. Just stick them in the freezer and haul them out as needed in the mornings.” I turned to leave. “They’re not frozen at the moment, in case you need to do some quality control.” I heard him laugh as I walked back down the hall.

As soon as folks learned that I was in hospital and battling cancer, the offers to provide meals starting pouring in. On the one hand, bringing meals was a great idea because I did almost all the cooking for the household. However, my household is almost impossible to cook for. Here’s the list of culprits and their quirks which makes those provide-a-meal propositions more than anyone bargained for.

• One son eats primarily white carbs. Vegetables and most fruit should be avoided if at all possible. Anything that tastes too healthy is suspect. He doesn’t even like regular pizza or apple pie. And he’s lactose-intolerant.

• The Husband won’t eat nuts, peppers, or legumes of any sorts. He doesn’t like mushrooms, coconut anything, or Mexican food.

• The Gramma is supposed to eat low-salt but doesn’t like much for flavorings other than salt. If a meal doesn’t include meat, it doesn’t really count as a “real meal.” Plus, for several months, she needed all her foods pureed.

• The Niece avoids white carbs of all sorts (breads, potatoes, pastas, rices – unless whole grains are involved) and she prefers legumes and veggies to meat-heavy meals, unless it’s something like boneless chicken breasts, Atlantic salmon, or high-grade beef cuts.

• The other son really eats almost everything. He loves good salads and cheese but isn’t so keen on baked potatoes, grocery store breads, and breakfasts.

• And with my colectomy there was a slew of foods on my naughty list, including fresh veggies, whole grains, nice cuts of red meat, dried fruit, nuts, (really the list was very long). And to throw a twist in the whole thing, after surgery #2, I was supposed to have a fairly high salt diet, ridiculous amounts of protein, and lots of fluids but no fruit juices, carbonated beverages, diet drinks, propel, caffeine, or peppermint tea.

• One consolation in the menu planning was that the daughter, with her extreme avoidance of all things dairy, was mostly away at college.

If you examine the above list, it’s like another impossible logic puzzle. What in the world do you say to someone who offers to bring a meal to this motley crew?

When I got sick, the offers for meals, flowers, and cards didn’t surprise me. Girlfriends, colleagues, and people I knew from church would ask if I was up for visitors and to let them know if they could help in any way. Again, no surprises. What did surprise me was when colleagues I didn’t know very well offered to come over and sit with me or to fly from quite far away to help our family (even though one of them admitted that she can barely microwave scrambled eggs). These offers did surprise me. Then one of my colleagues who grew up much farther south than I did explained it to me. “Since moving to Michigan, I have learned to ask before I just go visit people in hospital or at home.” She shook her head. “Back home when my dad passed, we had so many people in the house all the time and they all brought so much food, that we had to ask them to leave so our small family could actually just talk to each other.” She also told how she felt so lonely, when her Michigan co-workers and friends didn’t arrive at her home in droves during a period of illness. “You northerners,” she nodded at me, “you prefer to grieve or be in pain or be cared for by closer family and friends. You don’t need half the town hanging around close by to make sure you don’t feel lonely.”

Of course, she and I both know it’s not so simple. In both the north and the south different sub-cultures have different traditions and expectations. It’s not that my colleague’s southern friends tend towards loneliness or that my northern friends are aloof; it’s our cultural expectations. When a different colleague offered to fly from down south to help out around the house for a few days, we thanked her and politely declined. We would barely expect that of a relative, let only a colleague far away. But I have no doubt, her offer was genuine, because that’s what she and her people do. If the roles had been reversed, we would have sent cards or flowers or both because that is what we do.

After getting to know the customs of some of my more southern-oriented colleagues, I’d like to offer some ideas beyond bringing a meal. After all, some of us hate cooking and others of us have families that are almost impossible to cook for. Also, we can all use some good ideas for ways to support and encourage –ideas that are somewhere in between sending a card and booking a flight to spend a week “keeping company.”

Do what you do best and enjoy. Don’t offer a meal if you hate cooking – especially if you’re not very good at it. I think it’s also okay to offer to pick up take-out from a favorite restaurant.

• If you do like cooking, I recommend doing what one of our amazing colleagues did. They looked up 5 recipes online that seemed to be within the realm of possibility for our nearly impossible pack. They sent us the web links and asked us to choose which recipe we would most like and what if any changes to make.

• If you have a car and flexible schedule, offer to play chauffeur. If you’ve had a sick spell anything like mine, you know that there is no shortage of opportunities or need for someone to take you to a medical appointment. I was lucky that all my kids are old enough to drive themselves to their commitments, but if your friend’s children are young, they might need a small army of chauffeurs for everything from soccer games and trumpet lessons to play practice and girls’ club.

• If you like shopping, offer to shop. Does he need some smaller shirts because he lost weight? Go buy 4, let him choose the one or two he likes best, and return the others. Does a child in the family have a birthday coming up? Ask for a list of options and offer to do the legwork (online or in store).

• Are you more introverted? Not every act of kindness needs to involve long or face-to-face interaction, which can be good news both for very sick patients, as well as for introverted patients and supporters. Leave the box of brownies on the porch bench and text from the end of the driveway (not while actually driving). Pizza places aren’t the only ones that deliver. And you can stuff a lot of little surprises into one of those Priority Mail boxes. Many gifts or shows of support can also be given anonymously. (We still don’t know who sent us the red container of flower bulbs that grew into 20” tall “soft whites” that bloomed beautifully through a snowy February. Thank you, whoever you are!)

• Can you deal with computers and the internet? Perhaps your sick friend could use help setting up automatic payments for bills to avoid late fees.

• Taxes, anyone?

Double dip into what you are already doing.

• If you are going grocery shopping, ask if you can pick up a couple bags’ worth of items. Ask for a list of top needed items. If they offer to pay, fine. If not, it’s still likely to cost less than delivered flowers. Or you can just consider “paying it forward.”

• If you have library items to return, pick up some books for your friends or their kids and then offer to pick the items up and return them to the library again in two weeks. Your friends could even go online and reserve books for you to pick up later. (This assumes you have friends that still enjoy such wonderful, “old” technology as physical books.)

• If you have a basket of mending to do, offer to sew on a button, fix a seam, or patch a hole. (People still do that sometimes, right?)

• Ask if your friend has any prescriptions that need to be picked up this week or tell them to text a request the next time there is a need. There’s almost always something you can pick up for yourself at a drug store. (We’ve lost count on how many times even in one week, one of my boys has had to make a run to the pharmacy. On some days, it would have been nice to have a “drug runner.” Note: You may need a birthdate or other info and exchange of money may be involved.

• I also hear that there is this thing called “ironing” which is still practiced in some families.

• Laundry. I certainly hope that this is practiced regularly in households everywhere.

Think just outside the box

• If you know that your friend usually picks up his mother for lunch on Fridays, ask if you can pick up his mother and some take out and bring them both over for a lunch-in.

• Does your neighborhood, faith community, school, office, factory, club, etc. have a list of duties that rotate? Look ahead on that list and volunteer to take over the next duty that is assigned to your sick friend.

• If thank-you cards are part of your sub-culture, buy a box of them, pre-stamp all the envelopes and drop them off.

• Is there a gifting occasion on the horizon: Christmas, Hanukah, a birthday? Offer to wrap all the gifts. Take notes or get labels about which gifts are for which persons.

Make it easy for the patient to say “yes”. Have a concrete suggestion of something you’d be willing or love to do and make it sound like it’s no big deal.

• Call and tell your friend that you’re planning on stopping by the bakery tomorrow on the way home for work. Would they like some bread, cookies, or a pie?

• Tell them you made way too much chili and it’s in a disposable plastic container, could they use it now or freeze it for later?

• Call and explain that you have caved and are taking your kids on Friday after school to that new movie. Could you please take the patient’s kids along too?

• Text, call, email and tell your friends that there is a 2fer deal (on the gourmet coffee you both like, frozen lasagnas, jumbo cans of chicken noodle soup, black forest tortes, … whatever.). You really don’t need two, would they like one?

The best unexpected gifts we got during the last year of surgeries, cancer, chemo, and accidents included:

• A soft blanket with bright whimsical flower designs that spent 10 days in the hospital with me. I lost count on how many nurses, nurse-techs, doctors, and visitors commented on what a great blanket I had. In a rather sterile room of bland decor and scratchy white bed linens, that blanket was a constant comfort.

• A facial. Some salons or spas have special deals or even complimentary services for cancer patients. Chemo and fatigue do not leave you feeling particularly beautiful. My husband surprised me with an appointment at a local spa. (I had never had a facial before. Little does he know, that such lovely pick-me-ups just might be addicting.)

• A certain brother-in-law stripped the old caulk, bleached, and re-caulked our shower, while visiting for a few days AND cooking meals for the family every evening. (No, he’s not for sale, as far as I know.)

• Hand-knit socks and brightly colored, whimsical store-bought socks. (I would save the socks for chemo days or appointments when I was expecting bad news. One glance down reminded me that someone loves me.)

• A group of amazing women actually spent an afternoon weeding large sections of my backyard. (Weeding is right up there with caulking bathrooms on my list of things that might be deemed forced labor around our home.)

• An amaryllis bulb that arrived as a humble pot of dirt with a promise of beauty to come. (Like a metaphor for hope and recovery: over about 2 months it steadily grew and then produced outrageous, beautiful blooms.)

• A hired house cleaner for a huge number of hours that got us through months of recovery. (This surprise, organized by a special friend with a gift for organization and funded by several groups of persons who knew or worked with me or my husband, was given a big thumbs up by every person in the family. My mother loves a clean and tidy home and has suffered in her years living with the rest of us more laid back housemates. My sons actually cheered because they are the ones who have done most of the vacuuming and sweeping and rug shaking since Mom got cancer. And I can assure you that it is a great delight to return home from yet another medical appointment to clean lemony smells, a sparkling counter top, and a bedroom floor devoid of dust bunnies — some of which had been around so long they deserved to have names.)

• A Sunshine Basket – a basket for the whole family filled with small wrapped packages in many shapes. The instructions read: Anyone may choose and open a surprise if they need a pick me up on a bad day. If that present doesn’t suit you, give it to someone else and try again. The 25+ little gifts included a huge variety from play-dough and fun markers to instant soup mix, tea bags, and a Mad-Libs tablet, to scented candles, hand cream, and, of course, chocolates.

Best unexpected gift I heard of last year:

• At the company where a sick friend works, his co-workers (who could and wanted to) each donated a few of their saved up sick days. In the end, my friend didn’t have to take any unpaid leave. He had all his needed long time off of work covered by the generosity of his colleagues. Isn’t that awesome?!

Caring for the care-givers

• One of my husband’s colleagues surprised him with a care package designed to sustain HIM in the waiting room during my long surgery and the many hours and nights spent at my bedside in the hospital and at home. I was too sick and out of it to really notice much, but I remember that the little surprises included lots of snacks and a deck of cards.

• Offer to patient-sit. I know I needed a sitter several times when Rand had to be away and no one else in the house was available. (We all agreed that neither the dog nor the cat counted.) There were also times when I’m pretty sure I would have been fine for a few hours of alone, but it was a relief to my husband to know that one of our friends was going to be with me anyway.

• When the primary caregiver cannot make it to an important appointment, it can be a great gift to offer to go along and to take very good notes. In my case, I knew I wasn’t going to remember everything the doctor said at some of those appointments. (I blame “chemo-brain.”) Having an organized friend along allowed Rand to skip an appointment when he needed to.

• Sometimes care-givers need a little pampering too: a gift card for a massage, a thermos of soup, a run together on a Saturday morning, a container of their favorite flavor of Ben&Jerry’s ice cream…. You get the idea.

Tis a gift to be simple

• If you are feeling overworked, underpaid, over-committed, struggling with your own illnesses or caring for other persons, you do not need to apologize for not “helping more.” My northerly friends may already know this; my southerly friends may need to hear this. Never underestimate the positive effects of those small acts of encouragement: words exchanged in the breakroom, a card sent, a phone call, a voice message, email, a text message, even a note left on someone’s computer monitor, locker, or screen door.

• Sometimes what patients and care-givers can use most is just someone to be there. We don’t always need pithy sayings, religious slogans, words, or even lots of hugs, tears, or pats on the back. Sometimes we just need to sense you there, feeling all the mix of pain and fear, loss and sadness, uncertainty and hope that we’re feeling too.

Some of us (the patients) push back against needing or accepting help. We don’t want to impose or be a burden. This past year knocked me off my imagined podium of independent self-sufficiency. Guess where I landed: in the embrace of the communities that I am part of.

This essay was written sometime around a year into the Cancerland residency. Over the following seven and half years, there were many more ocassions where people helped us in one way or another – especially in the last six months, as Penny’s health continued to decline.

In our house food was a tricky thing, and not just because of the wide range of dietary restrictions. It was actually the kids who first suggested that we just decline offers of food. What they really wanted were the family favorites, made the way they were used to. And I think they liked the rihythm of preparing and cleaning up from a meal. It made things feel more normal. And normal is good in challenging times. In he end, we all agreed that often receiving food was more stressful than preparing it ourselves – mostly.

Even given all the food issues and the general preference to prepare our own food, there were also several ocassions where an offer of food came at the right time, and was the right thing, and everyone appreciated it. We aplogize for being so complicated.

And despite our family’s particular food issues, it hasn’t stopped us from offering to bring food to others. Everyone is different. They key is to match the needs and wishes on one side with gifts and abilities on the other.

So I’ll put in a plug for second degree helping. If you know someone well and they need help, you may be the person who knows best what they need and how to offer it – even if you are not the person who will be doing the helping yourself. You might also be the person who can ask “What would help?” and get the real answer.

But some parts of who we are don’t change easily.

Last February as part of that world-record commando run to be there for Anika’s recital, we managed a modest but cute reception afterwards for her, her professors, and friends. I had borrowed large rather elegant water dispensers from Susan (a resourceful woman who always has such things to lend). We filled them with water, ice, and with strawberries, lemon wedges, and orange slices to add color, flavor, and fun. We had a great assortment of Anika’s favorite snacks presented in the trendy white dishware I packed along and nicely arranged near the napkins and plates – in the school colors, of course. I had ample snack stores along and made sure to send them back to the dorms with Anika and all her friends as study treats – enough to last until spring break.

Naturally, I had also organized coverage for my courses back on my home campus: my competent TA was in charge and had detailed lesson plans to rely on. The homework for that entire week had been distributed the Friday before in both my classes, leaving the students with clear assignments and directions. Monday afternoon I would collect the quizzes and notes from my TA and then be back in the classroom on Tuesday. Such was the foolproof planning for the 36 hours I intended to be out of town – a snapshot of the workflow of the conscientious PhD-professor-mentor-mom-wife that was Me.

I’m quite aware that I had a fine set of faults that accompanied me wherever I went back then (and even more nowadays), but in general I thought of myself as a successful Do-er: efficient, thoughtful, organized, highly productive, reliable, caring, encouraging, kind, going the extra mile even under pressure and when it’s not easy. At least, that is how I wanted to see myself. Anyway, a year later that person, whether she actually existed or was just a sometimes successful facade, has disappeared. I look back at that self like a picture in a scrapbook. Okay, maybe like a one-year anniversary reminder from facebook. Or a long dissolved snapchat image.

Sometimes I wonder if I’ll ever be that person again. I try not to think about it too much, probably because I’m afraid the answer is “no.”

When I lead workshops on cultural intelligence or when my students and I are discussing how to understand other cultures and people, we often talk about cultural orientations – general tendencies of the majority. One of the biggies is: Doing versus Being. What’s more important to most people in your life? What’s valued in a society or community more: productivity, accomplishments, and trophies OR relationships, cooperation, and hospitality? It’s not an “either-or” proposition. Cultures, organizations, and individuals are usually some of each: doing-focused and being-conscious. But we tend toward one end or the other of this spectrum.

I like to think that I used to be hospitable. I love drinking tea with students and colleagues, my niece, and my mom. But until recently these tea times were crammed in between other commitments on the calendar. You know the drill – trying to find a day to grab a quick lunch with a friend, getting your son to actually commit to a dinner time between track practice and the football game, exasperation as you realize you booked a dentist appointment over top of the yoga class you already missed last week. Have you tried recently to set up a meeting with more than five people? It takes a dozen emails and complicated app-assisted polling to make it happen, and even then there’s always someone who has to come late or leave early or miss it altogether. My sub-culture and maybe yours too is definitely on the Doing end. If your calendar isn’t full, you are either a social introvert or not using your time productively. You might even be labeled as “lazy.”

Right now as I write this, and honestly for so much of the past year, I’m stuck in “Being-Land.” I used to make hot breakfast for everyone, clean up the kitchen, teach classes, meet with students, chair a committee meeting, plan lessons, grade quizzes, all while staying on top of my email in-box, and then head home to whip up a dinner without using pre-packaged anything and often still manage to have fresh apple pie for dessert, clean up the mess, and upload handouts or links to the websites for my courses before bed. On particularly good days, I could even fill my bento box with enticing nibbles for lunch, write the check for Jason’s viola lessons, and remember to collect donations for the upcoming administrative assistants’ day. In contrast, when you’re stuck in the Being-kingdom of Cancerland, the list of accomplishments stars things like: “got dressed” and “brushed teeth” and “remembered to take all my meds.” Okay, I admit: I hardly ever take all my meds without someone reminding me. Call out thanks to husband and both my boys. But if any of you tell me that I should drink another glass of water any more often than you already do, I may be obliged to go beyond giving you the evil eye.

Not so long ago, I ventured, oh so briefly, into the Kingdom of Doing. What a complete disaster! I wanted to help my mother get some slippers. By the time we drove to the store and located the slipper display, both of us were already tired out. But once you’ve gotten to the store and the possibilities are neatly hanging in front of you, you’ve got to give it a try, right? I found a short table covered with jumbled pajamas and shoved them to the side, so Mom could sit down. WHY are there no chairs in stores anymore? I don’t shop faster because there aren’t chairs. Dear Store Managers: I would spend more time in your store, if I or my mother could just sit and rest a few minutes in between housewares and slippers! And, really, am I the only one who wants to SIT when trying on footwear? After 15 minutes of fetching and returning beige, navy, mediums, larges, black, cloggy, ballet types, and booties, we left the store. Fortunately, we didn’t have to stand in line at the cashiers because we never found slippers we wanted.

What made the venture a disaster, rather than just a disappointment, was the nausea that hit me like a brick as soon as I got to the car. After sitting in the restaurant parking lot waiting for the crisp winter air to whisk away the queasy feelings, I thought I’d give it a try. We got seated in a booth, but the dining room was wobbling, the pictures on the menu made me even sicker, and I wanted to cry. Not only had I just failed at the Doing, but now I was failing at the Being. Mom asked for her lunch to-go. The rest of the day was a lost cause, except that my three boys got to bawl me out, each in their own special way:

Rand: Why didn’t you have all your anti-nausea meds along?

Andrew: What are doing trying to help Gramma with stuff? That’s what I’m here for.

Jason: Mom, don’t you understand yet? (He’s 17 and still figuring out how to tell his mom that she’s been naughty.) You are actually sicker than Grandma. Stop acting like you’re not.

The only things on my calendar nowadays are medical appointments. Heaps of those. If only the Cancer Pavilion (Yes, that is really what it’s called.) had a frequent customer program! By now I would have collected enough punches or points for a free trip to Hawaii.

With so little on my calendar and the fresh memories of disastrous ventures into Doing, I’m trying to focus on Being. Recently I ate breakfast at the same time as Mom. I nursed a cup of tea while she carefully broke her spekulatus cookies in half and dunked them bit by bit in her cup of instant coffee. We chatted about being sick and the failed slipper mission, and we agreed to a competition: who can gain more weight in the next two weeks. Breakfast lasted so long, we went straight into warming up leftovers for lunch.

It is good for me to realize that there is more to me and to my life than the books I publish, the courses I design, the decisions I make, the meals I cook, the products of Do-ing. So, does that time of Being with Mom indicate my embrace of a more Being orientation to life? I’d like to think so, but I have some doubts: “Learning to appreciate Being more” is on my list of things to accomplish during these months of recovery. It’s on the list right near “Finish that book manuscript for work” and “Write about this journey.”

Twice in the last couple weeks I ran into people who had not yet seen me since Penny’s death. The first were friends of my parents. We engaged in a rather typical, brief exchange: “So sorry…” “Thanks…” and moved on.

The second exchange was with a retired university colleague whom I hadn’t seen in quite some time. “I can’t believe it. I never even knew she was sick.” Many people have commented to me over these months about how productive Penny remained even while in Cancerland. Some, like this colleague, didn’t even know she was living there.

Doing remained an important part of who Penny was, and we learned how to organize things to make sure the most important things happened. We would talk about it terms of her battery, which required more time to recharge and drained more quickly than it had before. Each day was orchestrated around having enough juice in the battery at the right time of the day. A work meeting at Calvin was often preceded by a leisurely morning and followed by a complete collapse into our most comfortable sofa. It was not uncommon for Penny to fall asleep at the dinner table.

We talked from time to time about whether she should retire. She had plenty of other things she could do and enjoy. But she also liked her work, and it wasn’t until Spring 2024 that she finally decided it was no longer reasonable to continue “doing” it.

But it is also true that being took on a more prominent role in our daily and weekly rhythm than it had before. I remember once, years ago, after my younger sister visited, she asked me: “Rand, when do you just do nothing?” I didn’t have an answer. She has always been better and being than I have been. Even on vacation, my usual tendency is to want to pack as much into each day as possible.

But when Penny’s battery had been spent long before dinner, our evenings became more about just being – just doing nothing – together. To be fair, Penny would often knit, if she was up for it. Knitting was in a special category where doing and being intersected. Penny could knit while carrying on a conversation, or just relaxing, or watching a movie, but there was also a goal and a product that came from it. It was a doer’s way of being, I guess.

Knitting also became a key diagnostic tool for me; the K-index, we called it. Knitting normally, knitting slowly, interested in knitting but not really making any progress, not even interested in knitting – that pretty much told me how she was feeling on a given day. She always brought knitting to the hospital, and the K-index was a pretty reliable indicator about when it was time to return home.

In February last year, Surgery #1 came out of nowhere. We had no advanced notice of our inevitable entry into Cancerland. I thought I was battling some weird parasite. When we showed up at the urgent care facility, I felt pretty sick but, as typical, looked reasonably calm, cool, and not in serious pain. One urgent care employee almost sent me home to wait for my scheduled colonoscopy in the next week. A different health care person thought perhaps it was an appendicitis. Fortunately, the second employee won and I was sent to the ER for further testing.

The ER docs determined that I had a blocked colon and needed emergency surgery. With a phone call and email, I notified my departments at work. I stepped suddenly and completely “out of office,” leaving my colleagues to scramble and my projects delayed indefinitely. I left all other communication to the husband.

At the hospital the gastroenterologist, aka gut doctor, was matter-of-fact: the blockage of the large intestines was likely cancer. We were looking at 8 weeks of recovery and then 6 months of chemotherapy. I remember asking: Do people beat this? In his nonchalant way, he said that people beat this cancer with this surgery and chemo all the time. They removed the racquetball-size tumor along with most of my large intestines and 90-some lymph nodes. The pathology report confirmed that the tumor was cancer and 4 out of the 90+ removed lymph nodes were positive. Diagnosis: stage III colon cancer.

I was discharged after five days but then ended up back in hospital with a blockage due to swelling around the anastomosis site (the spot where they connected my small intestines to what was left of my colon). As much as you may be longing for home, if they let you stay an additional day in hospital, I would take it. That beats having a crisis at home and having to return to the hospital. During those tumultuous few weeks, meals showed up at the door, cards started arriving, flowers were delivered, and the family at home tried to “Keep calm and carry on.” We are the opposite of a high drama family. Andrew’s last semester of college was revving up, Jason had high school, Science Olympiad, viola, and symphony to keep him busy. My niece who lived with us was working full-time, and Rand tried his best to miss as few class periods as possible. My mother penciled in short visits to hospital in between her usual calendar events of breakfast with Lois, errands, and her own medical appointments.

Apparently our children used their i-gadgets to keep in touch with each other more than usual after my diagnosis. I heard via Rand that each of our three kids had talked with him separately, expressing concern for one of the others about how much stress they felt with Mom being so sick and in the hospital. The oldest, Andrew, manages stress by focusing on his projects; when Jason is stressed, he sleeps; Anika becomes reclusive. So, we were all surprised when my daughter announced that she had asked for a leave from her studies and was taking a bus home to be with family for a week.

I manage stress by compartmentalizing. So, I didn’t obsess about my own mortality. That got shoved in a box with a solid lid. I stayed focused on the immediate tasks at hand: walking circles in the hospital hallways, rolling over in bed gingerly without getting caught in the IV tubing, putting on a cheerful show when any visitors arrived. As miserable as I felt, the plan for recovery and cure seemed pretty well laid out. I don’t know how Rand managed it all. He seems to surf the tidal waves. I guess he was just born even keeled and with the rare ability to sleep in those uncomfortable hospital chairs. I kept telling him that he could probably go home to sleep in his own bed, but I think that spending as much time with me as possible and making sure I was well cared for is what HE needed to do. He is the best arranger-of-hospital-pillows in the world. I highly recommend requesting as many pillows as you need and stuffing them everywhere around you to make you as comfortable as possible.

As I was being readmitted after just a few days at home, we called in a favor from our church elder to meet Anika at the bus station and bring her directly to the hospital. Funny how those two things happened at once. Anika’s arrival from far away to meet me in the ER was like a bell tolling: hey, you ARE really sick and this is serious. Being on leave made her the only family member to officially take a break from routine to spend time with me; for the duration of her visit she had no events on her calendar. Ah, now I can see some of the advantages that those southerly folks have when “keeping company.” I had lovely long chats with Anika when she visited me in hospital. She dug up my recipes and with some consulting she made sure that her “baby brother” had a homemade birthday cake. I was discharged again just in time to celebrate that birthday with the gang.

I didn’t actually expect my daughter to drop everything and mess with the long bus ride home. That’s asking a lot of an extremely busy university student involved in at least four music ensembles, a band, a worship team, and a boyfriend, in addition to her course load. Our family at home was handling things reasonably well. We didn’t need her to come home, and neither Rand nor I were in Mama-Drama mode. See previous comments related to being calm, cool, and low drama.

Nevertheless, Anika chose to come home, and it was wonderful.

When we asked about her decision, she recounted a conversation she had with the dean of students. Anika was trying to decide what to do and that wise woman leaned in and said, “There is no question. Of course, you can take a leave if your family needs your help at this time. But you can also do this because YOU need to be with family at this time.”

Each child, each family member, each close friend handled the stress of my cancer in his or her own ways; each person needed different types of things to get through those first weeks after diagnosis. Fortunately, many of the ways of managing stress fit together: Anika showing up and baking cake decreased the cooking stress and made her brothers feel loved; Jason’s napping meant he was lounging in the den with Mom, when that was about the only thing I could do with him; Andrew, who was directing a short film (ironically about a young woman whose mother was suddenly admitted to the hospital), diverted his stress to the film making. I never quite figured out what some of my family and friends most needed. I know many just needed to be kept in the loop, be allowed to drop by with flowers, or provide a meal; some needed to keep their distance.

Throughout those first weeks and even months, as weak and helpless as I felt, I was able to assure my children that I was going to beat the cancer. I guess what I needed (besides the obvious help with almost everything) was the encouragement of all the friends and family in all their different ways, plus the hope I had for the future. This surgery, this recovery, the physical therapy, and the chemo were all a temporary detour or hurdles on the path that I had been traveling and would continue on. Envisioning that cancer diagnosis and treatment as a detour helped me and everyone else put things in perspective. Thinking of that first battle with cancer as manageable hurdles on a continuing path helped us get through.

In contrast, Surgery #2 came with a two-week notice. On a Friday evening in November, the doctor called to tell me that I needed surgery, but we had to wait until after surgery to know the extent of the cancer, the real diagnosis, and the prognosis. So, because I’m a planner, I made my to-do list. I organized my courses and materials so that the last weeks of the semester could be taught fairly easily by my colleagues. I accomplished an impressive amount of Christmas shopping. I spent a lovely afternoon with my best friend and cooked favorite things for the family, including freezing several home-made pie crusts. I tidied my office, informed my co-authors and committee members, and took my office plants home. I got caught up on laundry, stocked up on groceries, and packed for the predicted 10-day stay in hospital. I couldn’t control the cancer or the surgery outcome, so I focused on the things I could control. That’d be my tip #1 to somehow not go crazy waiting for the “big bad day.”

The toughest part of the two weeks between the bad news from the doctor and the actual surgery was the unknown. How much cancer is there? What if they can’t get it all out? What if I go through this whole terrible surgery and I still have only a year to live? Once we had decided to “go for broke,” Rand and I talked about bucket lists – what do we still want to do while we can? But it’s hard to make bucket lists without also thinking about all the things that you might not make it to: graduations, weddings, seeing what careers our children choose, being proud of their accomplishments and being there for them when they experience failures, playing a role in the lives of grandchildren, and growing old together.

Then there was the next inevitable question: What is “worth living”? Which disabilities or pain levels, side effects and symptoms, or health status would push us from a “reasonable quality of life” over to “not worth it anymore”? That’s a hard one. I’m pretty sure that no one can answer this easily for someone else. In all likelihood, Rand will have to answer this question for me and for us, so it was and is important to have these conversations together.

My criteria for “it’s worth it” are relatively minimal. I don’t need to run 5Ks or be able to hike the Appalachian Trail. Confession: I hate all exercise, including and especially running. I exercise (sometimes) because it’s good for me, like cleaning the toilets and taking my meds. I don’t need to travel the world or teach more, even though I love doing both. I also don’t need to publish more articles or books related to German or language teaching, as much as I’ve enjoyed that. Although all these things (except that bit about running a 5K) are parts of my identity, of what has defined who I am, they are not central to what makes my life worth living for me, especially in an uncertain future dwelling in Cancerland.

I do want to feel I can contribute in appreciated ways to the friends and family that matter most to me: writing, knitting, cooking, conversation, short hikes even if those are done in a mountain-bike version of a wheel chair. Being able to encourage my kids and grandkids along their paths, whether via facetime, emails, sharing laughter, or holding their hand when they need it most. Kisses and hugs, too! I have this admittedly rather Hallmark-y reel in my head of grandkids arriving at my door and giving me a big hug. But I don’t need to be able to do ALL those things for me to deem a future life “worthwhile.” Of course, the things I’m able to do will have to be balanced against the costs, which would be primarily the toll on me (pain, symptoms, side effects) and the toll on those around me (emotional, physical, financial, spiritual, etc.).

Since the docs couldn’t make a firm diagnosis and prognosis until after surgery, we didn’t share with others how very grave the situation might be. Low drama couples don’t raise red flags unnecessarily. We simply indicated that, of course, it was serious and we would know much more after surgery. We didn’t give out even the tentative no-surgery prognoses. That just seemed like heaping stress, especially onto the kids, when we had decided to go for the surgery option anyway. This decision to downplay rather than overplay information had become part of our M.O., so persons closest to us probably read between the silences. Actually information management can be such a messy business, it deserves its own chapter.

Surgery #2 lasted over nine hours. The pathology confirmed what the doctor summarized immediately after surgery: metastatic colon cancer. They took out parts of the lining of the abdomen and a tip of the pancreas, plus the entire spleen. They had to remove the section of intestines which were reconnected after the first surgery; this included all my remaining colon and some small intestines. Cancer on the outside of the ovaries and uterus meant a radical hysterectomy. But the liver and the rest of the small intestines looked clean. This surgery included a HIPEC procedure, fondly referred to by some as “shake and bake.” Basically they give your insides a heated chemo soak while they jiggle your body around. See the TMI chapter for details, unless I can’t get myself to write about it when I get there. I woke up with a nasty tube down my nose into my stomach, another tube for drainage out my side, and an ileostomy (a section of small intestines brought to the outside of your body so that all the poo goes into a bag). Days in the ICU were followed by a week in hospital, which was followed by a month of in-home visiting nurses, physical therapists, and occupational therapists.

Recovery has been long and slow, marked by fatigue, light-headedness, nausea, dehydration, serious ileostomy (stoma) issues, muscle atrophy, and losing 30 pounds. For weeks after surgery, a “good” day meant that I brushed my teeth twice and didn’t have a poopy leak out all over or a nasty rash reaction to some new medication. We tapped into Rand’s mathy-organizational mind to master the daily meds regiment. Pill X needs to be taken every 4 hours. Pill Q every 6 hours. Pill Z x 2 every 8 hours preferably NOT within 30 minutes of a meal. Pill K twice daily with food… You get the idea. It’s almost like one of those dreadful logic puzzles. We took one day at a time, dealing with one complication after another after another and getting referred to different specialists for weight issues, symptom management, and physical strengthening. I have decided that at some points getting healthy really is a full-time job.

Before surgery in mid-November, I thought that I would be well enough by the end of December to really enjoy the holidays with my daughter and her boyfriend and the whole family together. I imagined cooking a great Christmas dinner and baking several of my signature recipes, singing and doing music together around the piano, and long late nights playing board games. (In my experience teens and twenty-somethings start talking for real about life most easily between 11 pm and 1 am. So if you want to create those times to really learn what’s going on in their lives, the parent has to stay up late too.)

As the semester ended and the holidays approached, I realized my happy hopes were not going to happen. I was barely able to deal with getting dressed; I needed serious naps at least twice daily; a morning shower would wipe me out for several hours. In the end, Rand and Anika did all the cooking and baking. I joined in meals whenever I could. I went along to two movie outings. The first outing went fine. I was pretty nervous about poop-bag management. Read more in the TMI chapter. The second film experience was miserable, as I sat there with a plastic bag at the ready in case I needed to throw up.

But it wasn’t all lost hopes and plans gone awry. New Year’s Eve the meds and stars aligned: we played games, sang harmonies around the piano, and the kids pulled up dancing music off their i-devices so that Rand and I could dance the few minutes before that midnight-New Year’s kiss.

During and after the let-down of Christmas break, I adjusted my approach to the long, very bumpy road of recovery. I started focusing on the small picture: mini-steps and micro-goals. Very mini-steps toward admittedly micro-goals. I stopped focusing on goals that were just too big and too far away, like gaining 10 pounds. If that had been my goal from Christmas to Valentine’s Day, I would have failed miserably and felt like a failure. Who needs that? But micro-goals I could reach: for example, stop losing weight. With that in mind, I focused on the mini-steps to get there: down that power shake, take two more bites, drink four more sips of Pedialyte.

On the relational front, I couldn’t commit to all the holiday gatherings, Jason’s school concerts, the annual wreath making party with friends. But I could commit to the one holiday gathering at my in-laws, letting them know that I would need a bed to nap on during the usual game playing; I could promise to watch the live stream of Anika’s Christmas concert; I could send along the little love-ya gifts for the wreath-making women even if I couldn’t make it to the party myself. So glad I organized those before the surgery. I could still stuff stockings if I asked a friend to do the shopping. And that micro-goal double-dipped because that friend kept asking what she could do for us.

Anyway, it helped me to think of a day or a week as full of mini-steps toward micro-goals. I only had to choose the ones that I had a good chance of accomplishing.

Of course, in the weeks and months after surgery, the elephant in the room was the cancer. Did they get all the cancer? Are there tumors growing somewhere else? What IS my long-term prognosis? Is this the last Christmas all together? In early January, we had a first set of post-op visits and blood work. In my case, the CEA blood marker served as a measure of the cancer in my body. In September at the conclusion of 6 months of chemo, they tested this CEA to obtain a baseline: the CEA was 30. (Normal range is 1 - 5.) By mid-October the CEA had risen to 52. In November the CEA had reached 75. When in January 8 weeks after surgery I got the email notification that new results were available online, I asked Rand if he wanted to know the test results before we actually met with the surgeon. I clicked and read and burst into tears. The CEA marker was 1.

I am officially in remission. The cancer will return, likely in 2-3 years. Every three months we’ll have scans and bloodwork. When the CEA levels rise again, we deal with it in whichever ways seem most advisable at that time. That will depend on where and how the cancer shows up. Rand summed it up so vividly: that’s when we start playing “whack a mole.” Here’s hoping the moles end up more whacked than I do!

So, we are now permanent residents of Cancerland. Although there are currently no tumors to radiate and the oncologist recommended no further chemo at this time, there is also no likelihood of cure. My job is to get healthy and as the primary surgeon put it: Live life!

We both liked Dr. Asiffi, the primary surgeon for the Big Surgery. Not everyone could do her job. She routinely gives people some of the worst news they have ever received, and then proposes a treatment that in some ways sounds even worse. She is both compassionate and direct. At our pre-surgery meeting, she told us that Penny would lose 30 pounds after the surgery. “Your job,” she told me, “is to make sure she doesn’t lose any more than that.” And when Penny asked whether her cancer would be the thing that killed her, Dr. Asiffi responded, “Yes. Most likely.” But beyond that, it would be hard to predict how things would go.

So we adopted the strategy of avoiding “pre-worry”. We didn’t avoid being informed or making necessary decisions, or preparing for things we knew were coming. But we could not prepare for everything that might happen. There would be enough to deal with as things actually happened. There was no sense in wasting the relatively better times worrying about worse times that would inevitably come – whether we worried about them or not.

Over the nearly eight years that followed the Big Surgery, we whacked a lot of moles. As Penny predicted, whacking cancer moles inevitably ends up whacking the cancer patient as well, and generally speaking, she felt worst when she as being treated. But we also lived a lot of life in between. Penny continued to write, she hosted a podcast (Diversity and Inclusion for All), she continued to knit, and bake, and doodle, and sketch, and make cards, and buy gifts. We didn’t do any more camping, but we took up kayaking, and enjoyed gentle hiking, a few nice AirBNB stays, and cabin stays in the upper peninsula and in Colorado.

Only one pie crust remains in the freezer. But Penny also taught two of our kids how to carry on the pie making tradition.

I hate crying. Your eyes puff up. Your nose runs. No really crying person looks like those Hollywood moments, where the single tear glistens as it trickles down the cheekbone of the heroine with the perfect complexion. In my real world, if crying lasts more than a few minutes, then your nose gets plugged up, and if this happens within two hours of bedtime, you’re doomed to a poor night’s sleep. I’ve had many restless, pain-filled nights in the past year spent in different parts of Cancerland. I’ve had only one bad night due to the sniveling and blocked breathing of a long cry.

In the 5 weeks after the end of my chemotherapy, I had pretty much undergone all the types of scans and blood tests that I had ever heard of. The blood work indicated growing cancer but the scans couldn’t find it. When a scan came back “negative,” we thought that was good news. Actually, the negative results just meant the cancer was deeper, less contained, trickier to deal with, and demanding more invasive solutions. In this same period, I started feeling good. No chemo, working with a trainer to build strength, sleeping well – all added up to better days.

When the doctor called, half my family had already left for a party. I answered the phone and got the bad news: cancer was growing inside the abdomen, most likely in the lining called the peritoneum. It was growing fast. She recommended surgery to explore the extent of the tumors, to remove them, to do a hot-chemo wash of the entire area, and to remove any unnecessary and affected organs or intestines. Yes, this surgery would be maximally invasive with a long recovery. The prognosis with surgery was unclear because they didn’t know what they would find until they got inside. The prognosis without surgery was grim: months, maybe a year.

Death walks beside us with a whisper-thin veil in between. It takes so little to push us through to that other side. He’s always there but we only seldom see him. Once in a while the veil is pulled back and we get that glimpse, like when the doctor gives us the sobering news.

That night I learned: Death has no face. When he gets close enough and tilts back that hood or the fedora, what you see is a reflection of your own face, expressionless with cold, lifeless eyes. When our bodies are embraced by Death, regardless of beliefs about souls or life-forces, or spirits, the people we walked with lose us. That night I cried for the things of life that I had presumed would be mine but which now seemed unlikely. I cried just as much for the loss that my family would have to deal with. I cried because my children were young enough to have never thought about Death wearing the face of a parent; at the same time they were old enough to be glimpsing that very image as we told them the news. That night I cried too long, and then unable to breathe through my nose, I tossed and turned until morning.

The next two weeks filled up with doctor appointments, pre-op tests, and organizing our lives at work and home to brace for the disruption. We toyed only briefly with the idea of not going through with surgery. Is surgery with six months of misery that results in only six more months of life worth it? The doctor assured us that there would be a better payoff than 1 for 1. We had just found a new normal after the first surgery, only to be told in no uncertain terms that this second surgery would be many times worse. What’s it worth to you: to see your child graduate from high school, or to be there to celebrate your daughter’s marriage, or to hold a grandchild even if they will have no memory of you that is their own?

In the end, we latched onto advice from a friend. The do-nothing prognosis was bad and that journey wouldn’t end with some magically painless slumber into Gloryland. So if the next year held several challenging months of pain and misery in either case, we might as well go for broke.

With that decision, I let the veil fall back into place. Rand and I grabbed hands and turned to forge onward. I’m quite sure that as we turned away from staring at Death and took that first step, Rand gave him a good punch in the gut.

I was included in the part of the family who attended the farewell party for our pastor and his family. Andrew and I were helping to set up a photo booth and take canddid photos during the event, so we went early. While there, I received a phone call. It was Penny. She had just gotten off the phone with the doctor and talked me through what she could remember from the conversation. Someone, the pastor I think, saw me slip away to answer the phone and asked about it when I slipped back in. “It was Penny. We just got some bad news,” was all I said.

Penny encouraged me to remain at the party. Her mother, who was living with us, was home, so she was not alone. “We can talk when you get home.” No one else knew about the phone call. We only barely knew what was coming.

“The Big Surgery”, as we came to call it, happened less than two weeks later.

Today is six months since the end of Penny’s residence in Cancerland. Dr. Assifi, the primary doctor for the Big Surgery, eventually told us that Penny was the longest surviving patient she had had who underwent that surgery. We certainly did better than 1-for-1 in the exchange. Penny attended college graduations for all three kids and two of their weddings. She didn’t get to meet any grandchildren, but her niece Paige came with her youngest grandnephew, Camden, while she was in hospice.

The day I proposed, Penny showed me a poem she had written sometime earlier. In her poem she imagined growing old and gray together. I managed to get to the gray part, but we didn’t really arrive at “old”.

Cancerland is not a joyless place – and we did our best to find joy where it could be found. We laughed more than we cried. But it is not a pleasant place to live either: pain, discomfort, uncertainty, limitations, and challenging decisions are always nearby. As is the unavoidable awareness that the horizon of your future is much closer than you had once imagined.

The online Urban Dictionary’s top definition for “Kemosabe” reads: “An understanding of all that’s involved in chemotherapy.” Then they offer an example sentence: “When I first escorted my aunt to the clinic, I hadn’t a clue about the treatment – but now she’s all better and I’m all kemo-sabe.”

Really? I’m obviously out of touch with the world out of which The Urban Dictionary comes. With apologies to the students and colleagues who speak or are well-acquainted with the Navajo language, I think most folks I know connect “Kemosabe” with the very old Lone Ranger TV show. And, (a) yes, I know that “sabe” is related to “knowing” in Spanish, (b) a friend informed me that it’s supposed to sound like “chemo-savvy”, and (c) some us of also know that “kemosabe” really isn’t a term of endearment for masked white men riding horses.

Returning to this idea that someone after accompanying a relative through what is often a long journey of chemo treatment could be “all kemo-sabe,” I am dumbfounded at how the example sentence flirts almost whimsically with the experience of chemotherapy. If I let the patients I know sum up their therapy, I’m guessing a quarter of the descriptions should be banned from dinner conversations for the sake of everyone’s appetite, one-sixth of the descriptions would make this essay PG-13, and zero percent would choose words from other languages thought to be terms for your best buddy. A long list of variables, reactions, and adjustments en route make everyone’s chemo journey unique. Some folks get blasted pretty fast and furiously; others have chemical infusions twice a week or bi-weekly. One of my friends will get infused every three weeks for the rest of his life.

I do not want to downplay the suffering or challenges faced by women (and men) dealing with breast cancer, surgeries, reconstructions (or not), and chemo-induced hair loss. We all know or know of cancer patients who have lost all their hair. You can spy them, especially the women, in public. Folks, including my past self, donate hair to make wigs for them. And every time I go to that cancer center, there are hats galore for the taking – sewn, knitted, crocheted. In my many hours spent in medical buildings and offices, it’s not too hard to find support groups, salons, and catalogs of supply options for both hair loss and mastectomies. Who hasn’t seen the pink ribbons, fund-raising runs, TED talks, and whole conferences with famous guest speakers talking about breast cancer, body image, the BRCA gene, Angelina Jolie, Joan Lunden, etc.? Ever since brave First Lady Betty Ford made her breast cancer public, it’s completely okay to talk about this terrible disease.

In contrast, colon cancer is not an easy conversation topic. Yes, I want to complain. Whether around the water cooler or the dinner table, who wants to talk about intestines and, let’s be honest, poop? While the reconstruction of breasts fascinates a lot of folks, no one really wants the details of the re-plumbing, ostomy-issues, and changes in one’s poo associated with colon cancers and colectomies (the removal of the colon). If I do dare a chapter on these TMI topics, I’ll be sure to label it something obvious so you can skip it if you wish. I get it: even if the President of the United States got colon cancer and had a colectomy, we would still avoid talking about it over dinner.

On the other hand, infusion chemotherapy IS something you can describe to folks without too many grimaces and looks of “TMI!” So, here’s how my first six months of treatment went. Maybe something here will resonate with you, help you, or help you support a friend.

About two months after the surgery, I began a standard chemotherapy for colon cancers of my type. Every other Tuesday I would go to the chemo depot – rows of infusion cubicles each with a recliner for the patient, a chair for a friend, and a TV. (I have yet to turn on one of those TVs. Thank you, by the way, for being at this very moment a Reader and not a TV-only person.)

Every time I set foot on that floor or in that building, someone has to weigh me, take my blood pressure, and check my temperature. I know they’re following protocols, but it must be a very inexact science. For example, I think some techs have weighed me with jackets and coats on, including cell phone and keys in my pockets and boots on my feet, while other times I’m wearing a T-shirt, leggings, and crocs. In my guess-timate, the clothing differences can be a six-pound swing. Second, I tend towards low-blood pressures. If the numbers are too low, then they’ll check it again – sometimes three times – until they get a number they like. Finally, my temp can vary by about two degrees, but no one seems to care.

Once you get escorted to your cubicle for the day, you should always ask for a heated blanket.

Whoever invented that idea and the little ovens that keep the blankets the perfect temperature should be nominated for some sort of Keeping-the-Peace prize. That warm bit of comfort and kindness keeps us all from crying as they poke us with needles, and whimpering as we realize it’s the start of another cycle of feeling disgusting, and possibly from swearing, moaning, or giving the evil eye when we are asked AGAIN what our pain number is.

In my experience, the set of pre-meds, chemical therapies, and post-meds, must all be confirmed and ordered at each visit. So you are stuck waiting around for the nurses to confirm with you that you still want to be poisoned that week; after that, the correct bags of meds in goo must be ordered from the pharmacy. When your batch of chemicals arrive, you get hooked up for hours of steroids, anti-nausea meds, chemotherapy cocktails, iron infusions, etc.

“Hooked up” is anything but sexy. A week before the infusion treatments began, I had a port surgically implanted about three inches below my right collar bone. You can see the tubing threaded from that superball-sized bump under my skin and over my collar bone; from there, I’m told, the tubing cuts into a huge artery or vein or something that feeds into my heart. Honestly for the first couple months when I looked in the mirror and could see those bumps and worm shapes under my skin, it gave me the creeps.

Anyway, getting hooked up involves inserting a needle with attached tubing into the port. You have the option of using some sort of icing spray to numb up the port area prior to puncturing. Freezing my skin sounds terrible to me, so I just grimace and bear it. It only hurts for about 30 seconds. Plus, I’ve heard that freeze spray is intense, “like icicles.” Part of me says: oh, come on, give it a try. The other part of me says: really? You do not want to trade the minor pain you know for an unknown pain of unknown level and duration.

After securing the special needle (which looks ironically like it has yellow butterfly wings) with clear adhesive rectangles, your specially-ordered bags of chemicals are hung nearby, tubes from those bags are fed through a small box that regulates flow rate, and then you sit in the recliner having various substances pumped into you and trying to forget how rotten you’ll feel later because of it all.

During your hours at the depot, there is the recurring excitement of the beeps. Your flow regulator beeps when it thinks there’s a bubble or an occlusion or an empty bag, and at times just because. Sometimes you get more than one box if they’re administering several drugs with different flow rates simultaneously. And all those boxes in all the cubicles in the whole chemo depot love beeping. The only comfort is that we all refer to them as “those beeping boxes!”

When all my bags were empty, then as a bonus I got to leave with a small pump that injected more healing poisons through tubes and my port over the following two days. You cannot disconnect the tubes from the pump or the tubes from your port at any time in those 48 hours. You are given instructions and a special bright yellow bag with symbols that look like radioactive danger signs, in case some part of your pump system becomes unhooked and you must scoop it all up ASAP and put it in the bag to prevent contamination of anyone else or the environment. I don’t know anyone who carries that substantial bright yellow bag everywhere they go. I misplaced mine shortly after the second infusion session.

Anyway, I named my pump “Buddy.” He came with the most ugly, bulky fanny pack I had seen since the 1980’s. As a one-size-fits-all item, the waist straps were so long on me that they proved a hazard—getting caught or tangled up in car doors, oven doors, and zippers, not to mention dangling where they shouldn’t (like in the toilet bowl). So, after my first 48 hours with Buddy, I bought him two outfits – small purse-bags that I could sling over neck and shoulder so the pump would hang somewhat inconspicuously at my side. Sometimes it took all my brain power to figure out how to get dressed so that the tubing and Buddy ended up where I wanted them and not tangled around my sleeve, hanging obviously just below my crotch, or springing conspicuously out the top of my shirt.

With many or maybe most chemotherapies, there’s the issue of nausea. Many of you will know this drill, but if you’re reading this prior to your first chemotherapy session, discuss the following strategy with your doctor. You may indeed want to try this at home. First of all, I advise against being brave and assuming you will not need extra anti-nausea meds. In the past decade or so, the pharmaceutical industry has developed some wonderful options to combat nausea especially for chemo patients. If you wait to take the meds until you start being queasy, then the meds don’t seem to be as effective and you end up feeling pretty crappy. Believe me: this is an understatement. In my case, it took all of one session of “being brave,” for me to commit to accepting the recommended nausea meds at the beginning of the infusion sessions and to take the prescription pills BEFORE I started feeling queasy. Do what the professionals advise to stay ahead of the nausea, and save your bravery and energy for dealing with fatigue, crabbiness, muscle pain, or your well-meaning but rather tiring Aunt Millie.

If you can manage the nausea, you still have to deal with eating. Just because you don’t have the barf pail hanging from your belt, doesn’t mean that you actually feel like eating. For me and many others I’ve spoken to, you eat as much as you can on the first day of chemotherapy because every day for the next several the nausea and fatigue will get worse. Then after about six days (if you’re lucky), you finally start feeling better. You work hard to plan any outing or social event on the second weekend out from chemo (or as close as possible to right before your next chemo session), because there’s a chance you might be able to enjoy it. And then, just when you feel that life is manageable again, guess what? It’s a chemo infusion day, and off you go again to the chemo depot.

Hair loss and nausea stink, even though there are lovely hats and wigs and anti-nausea meds. But I think it’s the less obvious side effects that make carrying on hard because they’re sort of invisible unless you complain about them. Neuropathy – the inflammation and damaging of your nerves – can make your toes, feet, fingers, hands, nose, tongue, and throat tingle in a most unpleasant way, feel like they’re on fire, or be hyper-sensitive to anything cold. No ice cream. No ice in your drinks. No walking barefoot on tile floors. No peeling carrots from the fridge unless you’re wearing lined rubber kitchen gloves. I kept my winter gloves on the counter, in case I needed to retrieve anything from the fridge or freezer. And don’t get me started on mouth sores, cracking nails, and constant fatigue. For a while I shed skin like crazy, as if I had the world’s worst case of dandruff all over my body. But none of these side effects are obvious like being bald. Folks notice that, and they cut you slack, express sympathy, praise you for being brave or strong or whatever, and offer to help you. But with the less obvious side effects, it’s different. When you want someone else to slice those cold carrots, walk the dog, or vacuum the hallway, you feel like you have to explain and remind folks about your ailments – which gets tiring and makes you feel like a whiny wuss.

Even though I’ve experienced chemo infusion therapy, I wouldn’t claim to be “all kemosabe.” I know my treatment was easier to tolerate than many others. In my six months of infusion chemotherapy, I lost some but not all my hair. Wearing hats pretty much made me look normal. And I had a great family and friends that put up with my tired wussy self.

Of course, chemotherapy infusion treatments stink, but life during treatment doesn’t have to. That same spring the wife of a college friend was diagnosed with a blood cancer. Five weeks later, just as my chemotherapy was starting, she passed away. Reality check! All the nausea, fatigue, and the annoying, ugly, down-right crappy six months of careful poisoning – all that gave me a chance at Life, a chance to see my son graduate from college, to walk along the beach with Rand, to facetime with my daughter and to laugh about the ugly chemo hats I was definitely returning. So, yes, it was six months of chemo, but it was also six months in which I got to watch movies with my kids, float in huge inner-tubes down the Platt River with the whole family, write at my laptop while the June sunshine poured in through the porch doors, roast hot dogs and marshmallows in the back yard, enjoy tea with friends, knit a sweater for Anika, and gaze out at Lake Michigan from atop a sand dune while a lazy August sun slid beneath the clouds on the horizon.

From time to time I embark upon “going through some stuff”. About a week ago, I went through two closets that had accumulated all sorts of things in the last nine years.

Each time Penny was admitted to the hospital we would come home with one or two pink tubs. In them would be things like soap, shampoo, toothpaste, tissues, wipes, … Anything that was brought to the room and not used while we were there. The nurses always told us to take it home since anything left behind would be dumped. So we’d take it home and stash it in one of the closets.

Actually, we didn’t take everything. We usually left the Sparkle Fresh toothpaste behind. We figured the nurses could dump it for us and save us the trouble of dumping it when we got home. If you have time to prepare for a hospital admission, we recommend bringing your own toothpaste.

Most of the left-over supplies from hospice were boxed up and a friend came to haul them away (in two carloads!) last summer. She eventually found a place that would accept them as a donation. But I still have an ample supply of various kinds of bandages, gauze, scissors, tape, adhesive remover, … These have now been organized and consolidated.

I collected up a pink tub’s worth of hair products, creams, and lotions to see if anyone we know can use them before I dump them.

Hiding in the back of one of the closets was a hazardous materials clean up kit from chemotherapy. A while back I had dumped a couple of others, each located in an equally out-of-the-way and forgotten spot.

And on the top shelf of one closet were the hats. When chemotherapy was discontinued in favor of pursuing clinical trials, Penny’s hair began to recover. As it did, she moved more and more of her hats to that top shelf. For now I’ve moved them to the top shelf of a different closet until I figure out what to do with them.

One morning when I shuffled into the kitchen, Andrew was cutting apart a cereal box. “I won!” he grinned. “I won an X-box!” If he had been still eight years old, I would have gently let him down, informing him that when the cereal box says, “You might be an instant winner!”, that doesn’t really mean YOU. But my Andrew was then 22, a college graduate, working part-time and taking advantage of various internship-like opportunities, while living at home and apparently eating a lot of chocolate-flavored Special K cereal. He was carefully filling out the voucher from the inside of the box and addressing an envelope to be sent via certified mail. I had no doubts that my slightly OCD son had read the fine print at least four times. I still warned him, “Well, we’ll see.”

A few months after my mother’s open-heart surgery –– the surgery one week after Dad passed away –– her doctors informed us that the ejection fraction was not improving as it should; tests indicated a lot of leakage especially around one of the valves they replaced. When pushed, the cardiologist took a deep breath, “You’ve got a year, maybe a little longer.”

We knew what going downhill looked like, which rehab centers we didn’t like, that food and service in short-term and long-term senior and rehab facilities vary widely. Sometimes you’re lucky and a nurse or nurse-tech is kind and personable and has the time and energy to show that to his or her patients. But we had memories too of arriving to visit Dad, only to find him alone at a table in a poorly lit corner picking at a plate of notably unappetizing variants on mush. Mom remembered pushing the call button and waiting for what felt like an eternity for someone to come and help her to the bathroom. It took so long, the sheets needed to be changed. The probably overworked nurse-techs weren’t any happier about that than Mom was.

So, when we got the sobering news “maybe a year,” we decided that no one wanted Mom to spend more time in facilities than absolutely necessary. I spent months looking for a house that could become a comfortable home for my family of five, our exchange students, and Mom. And the dog. We all knew that Gramma would do better if she and the dog and all the dog hair could be kept separate. Of course, Mom wanted some space that could be hers, to retreat away from the hubbub that comes with three teenagers and a 12-year-old. Who could blame her? Open floor plans are great unless you might possibly want some quiet and privacy. The house also had to be mostly accessible for walkers and wheelchairs. Why are all those “mother-in-law” apartments in the basement or the attic?

Finally, we found a house. It was ideally located, but one of the most boring-looking buildings you can imagine. Nevertheless we went for it. Note to self: two professors with four kids in tow should not try to dissolve two households and move into a house with a grandmother in the middle of a semester.

We bought Mom one of those hospital-like beds with the head and knee areas that you can adjust up and down. We had a doorway installed between the brightest room in the house and her bedroom, and we put in a gas fireplace, so she could rest in warmth all winter long. I had references for home health care providers at the ready and was prepared, if necessary, to take unpaid family medical leave to care for Mom near the end.

Six years later we’re still in this house. Two exchange students have come and gone. My niece who lived with us for 2 ½ years just moved to grad school. We’re on the verge of sending our youngest off to college. And Mom is still with us. She is dealing with bladder cancer and recently had another heart valve replaced with a miracle minimally invasive catheter procedure. But by all accounts, she beat the odds.

Odds are odd. My statistician husband finds them interesting, useful, logical. So, when my first pathology reports came back after surgery in February, and the doctor said that 85% of patients with my stats are cured — not “survive,” not go into remission, CURED — we breathed a huge sigh of relief. Knowing the stats made the following six months of chemotherapy more tolerable. In fact, I tolerated the chemo cocktails better than most.

One month after chemo ended, I was feeling better than I had since before the Mondulkiri Curse. I thought I was doing well; after all, the odds were with me. But the bloodwork raised red flags; the scans showed suspicious areas; the bad numbers kept rising. When pushed, the doctors suggested if we did nothing, I had months, maybe a year.

Just to be clear, I have a reasonable basic understanding about numbers, approximations, and even statistics. Lucky for me, “basic” gets enhanced by my in-home math geek husband. So, I never expect to win the X-box1 featured on the front of the cereal box. What are the chances of that? Likewise when the doctors told Mom she had a year, we took action to make it the best possible year — preparing to accompany her with grace and dignity, care and love, from third base to home plate. The doctor never said, “Oh, and there is also a some % chance she’ll live 5 – 10 years more.”

From my first pathology reports through the months of chemotherapy, I actually didn’t worry much. After all, the odds were with me. Ignorance is bliss. Now I wonder what the chances are that my mother will outlive me.

I never thought I of all people would be in that 15% of colon cancer patients like me who are not cured. People in their 40’s don’t generally get colon cancer. How many times did a hospital person look up from reading my medical chart and comment on how young I was or how I didn’t look old enough to have kids in college? Somewhere on my charts I’m described as a “younger female.” I guess that’s like skimming home ads and reading about “newer appliances.” In retrospect, “You look so young!” feels like an unconscious, well-meaning euphemism for “Wow, you’re really unlucky.”

Penny’s mother did not outlive her. But things were unclear enough that her mother redid her will to make things easier and “fairer” had it turned out that way.

In June of 2017, Penny’s mother underwent her last treatment for her cancer. There were no more things to try that would have had a reasonable chance of success and that her 85-year-old body with years of cancer treatments, open-heart surgeries, and medications could tolerate. The first week of July she entered hospice in our home, where she had lived with us for nearly six years.

The first couple weeks of hospice were busy. She was weak, and was losing weight, but she had enough energy to have all of her siblings visit one day, and all of her grandchildren the next. Each evening our family watched episodes of The Walton’s with her, and she shared stories from her childhood. She would have been about the same age as the youngest Walton, Elizabeth.

By mid-July, she was declining more rapidly. Then Penny ended up in the hospital with a bowel obstruction. Each morning I helped Penny’s mom get ready for the day before heading to the hospital to be with Penny while my mother sat with her mother. In the evening I came home to help her get ready for bed and to be there if she needed anything in the night.

On the last Wednesday of July, I called the hospital to tell Penny that I would be coming a bit later than usual. Her mother had died. Among the many things we had not imagined before arriving in Cancerland was the thought that I would be with her mother as she passed and Penny would not.

With layovers, the transit time from our last stop in Cambodia back to campus must have been close to 30 hours. When you travel through 12 time zones, it’s best to give up keeping track of time. Just be sure to be at the next gate or departure point when needed and then attempt to eat and sleep at the “right” times wherever you end up. Alternately you can adopt the philosophy of a couple of our male students: eat whatever you can, whenever you can and, especially if you can get someone else to pay for it.

After a month of adventure and learning, the tired, smelly lot of us arrived back on campus on a Saturday and most of us (or at least the professors) managed to show up for classes on Monday morning. Bam! We all catapulted into spring semester.

Still plagued by the symptoms of parasites, I called my doctor and started down the path of referrals and tests. When you call medical offices and sound calm and collected, you get put on the non-urgent lists everywhere. Next time I’m going to sound agitated, panicky, and desperate. I can sound angry when I need to, as if on the verge of psychosis. Proof: I’ve won awards doing dramatic readings of Sylvia Plath poems. But I’m not very good at “sassy and stubborn”; it took no time for the director back in college to dismiss the idea of me playing Kate in Taming of the Shrew. Maybe I should consult with some of my friends from the east coast. They know how to exude that “Don’t you mess with me, Bucko!” attitude. They are also more practiced and agile with, shall we call it, “colorful” language.

All the tests and consults served as the forms and interviews for immigration to Cancerland, a move no one wants to take but you do the paperwork anyway. Even though I had relatives who had dealt with cancer, I had never really dwelled in the land of cancer with them. At most, I popped over the border for a short visit and then took the high-speed train back to my reality.

The delay in diagnosis did have a silver lining of sorts. On the first weekend back, Rand and I flew to New York City to hear our daughter perform at Carnegie Hall. By then I had lost most of my appetite and was feeling so bloated, I wondered if I might burst when the plane went above 20,000 feet.

It’s amazing what discomfort you can ignore when enjoying NYC with your husband and daughter: stopping in Grand Central Station, strolling past ice skaters in Central Park, taking in a show off Broadway, ferrying across the canal to the Statue of Liberty, and, of course, we proud parents got to watch the conductor shake our daughter’s hand on stage at Carnegie. Carnegie! If I hadn’t been so bloated, I would have worn a classy dress and borrowed my mother’s pearls.

The second weekend in February, Rand and I did our most impressive of many trips to see our daughter – trips we dub “commando runs.” We left Sunday morning and drove the 10 hours through Chicago to St Olaf College in time to attend my daughter’s junior recital. This included organizing and hosting the post-recital reception. After clean-up, we turned around and drove half way back, finding a hotel somewhere I don’t remember, and then completing the trip Monday morning in time for Rand to teach his courses.

I spent most of that trip reclined as far as the car seat allowed and by Tuesday I was sent to the ER. Much of the next week remains a blur in my memory. I don’t remember wondering if I might die or how long I might have to live. I had no strange dreams or premonitions. I didn’t notice Death or anyone else of interest lurking in the corners. All I could manage was answering the question about my pain number over and over again. “What number would you give your pain?” If I had had the energy I would have punched the smiley faces poster the nurse was pointing to. The nurses always define “10” as “the worst pain you can imagine.” I have a very good imagination and am pretty sure that having a limb blown off or being thrown into a raging fire would qualify as “10.” So, I gave numbers like 3 and 4 and once in a while 5.

Such modest pain numbers seem to put me on the back burner, bumped down in the surgery order by patients who probably needed more immediate care, or maybe just grimaced and complained a lot more, and who gave pain numbers like 9 or 10.

I do remember one more thing that I managed to do as I waited around for my turn in the operating room. I remember our pastor stopped by. I didn’t have the energy to open my eyes and look at him, but I do distinctly remember telling him that I didn’t think I could accept the nomination to be a church elder just then.

I remember a few things from diagnosis week that didn’t make it into this essay.

I remember suggesting that we get a cab back to our hotel one evening in New York, but Penny insisted on walking, and did her best to enjoy the walk, despite clearly not feeling well.

I remember Penny sitting on a chair after the recital at St Olaf, observing the reception, but feeling too lousy to really participate in it.

I remember crossing the border from Minnesota into Wisconsin and deciding I should try to find a hotel since I was getting tired, and Penny wasn’t going to be able to help keep me awake.

I remember Penny trying to sleep as much as she could on the drive home the next day.

I remember calling her doctor’s office as we drove to find out if we should finish the trip home or stop at a hospital along the way. It was late afternoon or early evening when we arrived home, and since the doctor had not urged us to get to a hospital immediately (see the discussion of pain numbers above), we decided to wait until the next morning to get a decent night’s sleep and to see if things would improve – as they had several times before, both in Cambodia and since her return.

I remember teaching my 8 am statistics class the next morning while Penny got ready for me to take her to the urgent care center immediately after class. It was pretty quickly determined that things were beyond urgent care, so we were sent to the ER. It was our first of many trips to the ER over the next 8.5 years. Eventually we had our ER routine down, but we were still novices at this point.

We spent the rest of a long, miserable day in the ER, mostly waiting between conversations with different doctors who were trying to figure out what could be the matter. I remember emailing to clear our schedules for the afternoon – an amazingly optimistic time frame, as it turned out. A CT scan showed a blockage in the large intestine, which explained the bloating, pain, and visibly expanding abdomen. A colonoscopy was scheduled for the next morning.

I remember Penny noting that because of her blockage, at least she wouldn’t have to undergo the usual prep for the colonoscopy. There was always something to be thankful for.

I remember receiving the cancer diagnosis before Penny had returned from her colonoscopy, and waiting to share the news with Penny once the sedation had warn off a bit.

I remember the phone calls to our kids, and to our niece, who was living with us at the time, to give them the news.

I remember returning to the hospital room after the colonoscopy. The nurses were already bustling to get us ready for the ambulance that was waiting to take Penny to a different hospital for emergency surgery. And I remember the surgery being pushed back from mid-afternoon to early evening because the surgeon was needed for an even more dire emergency.

I remember the phrases “aytpical presentation” and “you’re so young.” The diagnosis seemed to surprise most of the medical people.

And I remember thinking that there would be surgery, and recovery, and possibly some chemotherapy, and then this phase would be over, and things would return to normal.

Oh, and I remember my own trip to the ER last October. I had fallen two days earlier while helping someone carry a kayak down a slippery bank. Things hadn’t improved over the weekend, and by Monday I could barely move. As I gingerly shuffled up to the counter, I was asked for my pain number. I decided to take a different approach. “One notch below kidney stones,” I said. “Have you had kidney stones?” “Yes.” “Then I’ll put you down for a 9.” I didn’t tell them that I too have an imagination for several levels of worse pain. I let them enter “9” in my chart.

That did indeed seem to move things along a bit more briskly. I was pretty quickly situated in one of the emergency room bays I had been in before with Penny. And not long after I was settled and had an IV running, someone was there to bring me for a CT scan. I suspect they were worried about potential internal injuries, but all I had was 12 fractures of 9 ribs, a few of which were “moderately displaced.” A mere flesh would compared to all the things Penny had endured.

Our students hardly believe us when we tell them that January is the best month to visit Cambodia. As we dig trenches, teach children how to count to ten in English, or try to listen to the director of a local NGO pointing out the innovative irrigation system in a watermelon field, the sweat gathers along our hairline and drips down the middle of our backs. We pass around water bottles, preferring to share countless germs than have someone faint from dehydration.

If you can’t find any shade or the hint of a breeze, you start to wilt—literally! You can watch the eyes glaze over, the shoulders begin to droop, folks start leaning on each other and against any reasonable tree, hut pole, or wall; and if at some point we can find a tile floor not exposed to direct sunlight, the entire pack of sorry bipeds does the big flop. Everyone sprawls on the tiles in hopes that something they heard in high school chemistry about heat transfer is true and the flooring might suck the excess heat out of their bodies and leave them a normal temperature again. Even the professors can lose focus and not quite remember all the details of what innovative mixture you feed those crickets for eventual sale to the local market or how you get the nutrient-rich water from the small fish pond to the garden behind the thatch-walled house.

About ten days into our month-long study trip, we finalized our visit to Mondulkiri Province. “It’s north, more mountainous, more remote, and cooler.” A cheer went up from the crowd.

After at least 10 hours in a bus bumping along dusty roads with stops to practice using the squatty potties and to give our mentees the requisite opportunity to buy fried grasshoppers and sugar coated tarantulas, we arrived in a small town far away from any other signs of “civilization.” That evening my table ordered a peacock pizza. By then most of us had either converted or resigned ourselves to being adventurous eaters. When the pizza arrived, we all leaned in trying to figure out which curious topping might be the peacock. Finally, Kayla or maybe it was Seth said, “Oh, no, look! It’s a peacock!” The bits of fruit, vegetable, and unidentifiable meat bits lay fanned out like the tail when a cock is strutting his stuff. I noticed small slices of some sort of hot dog thing carefully placed where aqua-marine circles might have been, if you used your imagination and had very poor eyesight.

What happened next cannot be blamed on that pizza because I was the only peacock-pizza-eater who got sick. Strangely though all three professors came under what we refer to in whispers as “the Mondulkiri curse.” We three spent the same couple miserable days mostly in our hotel rooms, staying very close to western toilets. We entrusted our students to our on-site guide and sent them off to visit local villagers and enjoy a hiking tour of the surrounding rain forest—a hike which included analysis of a plot of land for its potential as a coffee or pepper farm and a missionary retreat center, as well as perfect selfie ops near one of the province’s beautiful water falls. They returned with stories and smiles, smelling unmistakably of mosquito repellent and, of course, sweat.

As was the case in our previous trips to Cambodia, the professors and students who happen to get sick do get better. It’s a messy business (the what-in-the-world-did-i-eat-that-is-doing-this-to-me ills), but with some rest, 7-up, crackers, and Cipro (antibiotics) we all get well enough to learn more about this country and its peoples: why clean water remains an issue; how the sea flooding during monsoon season leaves rice fields salty and almost unplantable; why the youth are migrating from the rural villages to the cities and the sweat shops; how during the Vietnam war clandestine bombings destroyed vast swaths of the Cambodia countryside; how well-meaning western NGOs contributed to arsenic poisoning in rural villages; how much of the anguish of the Cambodian Holocaust under the Khmer Rouge remains repressed, relegated to a couple memorial sites for tourists.

Like countries and people all around the world, Cambodia has a rich history and a fascinating culture – examples of notable ingenuity and stories of amazing resilience. With each opportunity I have to visit Southeast Asia and listen to the people there, often while sharing peacock pizza, Pad Prik, or chicken feet, I learn more about both the depravity and the nobleness in my fellow human beings, about myself and my cultural biases, about how much I don’t know and what I can learn from others.

I’m still mourning this loss: that I might never again be well enough for long enough to visit my friends in Cambodia, to escort young co-eds well beyond the boundaries of their safe boxes and to introduce them first-hand to the struggles and triumphs of a beautiful people and their country on the other side of our world.

Interestingly when you begin to mourn such losses, your assumptions about the future come into focus. Dreams and hopes and bucket lists get mixed and pushed through a sieve woven of CT scans, blood work, and the things your doctors say and don’t say.

But none of this was on my mind during the long transit home from Phnom Penh via Seoul and Chicago to Grand Rapids. I was enjoying the relief of another successful study trip: no serious injuries, no lost passports, no more than the usual stresses and unpublicized fees needed to cross the borders. Should I lead a student group to Germany next year? Or maybe I can propose a trip to New Zealand to explore how the country has worked to integrate new immigrants and the native Maori peoples into the fabric of society. Last January I still had the freedom to dream such things because I was clueless; I thought my Mondulkiri curse was a basic case of parasites. I couldn’t have been more wrong. Turns out Mondulkiri was sort of my entry point into Cancerland.

Actually, a little more investigating suggests that some version of this post was written at least as long ago as 2013 – several years before Penny’s initial diagnosis.

Driving home from work last week, I met Death. On that familiar 1.6-mile stretch on Burton Street – the one that I really should walk instead of driving three times per week. I was as usual multitasking: What shall I make for dinner, fat chance that anyone thought to move the wet laundry into the dryer, gotta email Corey about the change in schedule, move to the left lane to pass the parked bus.

Then I caught a glimpse of smooth wool slacks, brown pin-stripes resting on a curved knee brushing up against the glove box door right next to me.

Who wears brown pinstripes? No business card, neon sign, or formal introductions necessary: Death was in my passenger seat. I could feel it. My hands tightened around the steering wheel as I touched the brakes gently and furtively glanced at the car in front of me, the oncoming traffic, and the driveway on the right. Nothing unusual. And yet, there it was sitting next to me. And you thought cellphones were a distraction while driving!

Whatever you do, do NOT look at him. It is one thing to have a brush with Death; but when you meet Death face-to-face, you don’t get to come back again.

Brown pinstripes must be 21st century for “scary brown robe.”

Just because Death does not look like we imagine, he is still not a master of disguise. He is what he is. But in a wool suit, what would cover his face?

I knew I wasn’t dreaming, because in my dreams – of which I have and remember many – as soon as I wonder whether I am dreaming, the answer is clear: I am. From that point on, I can both observe myself and be the actor upon the stage, even if I still cannot control all the other players or the scene changes.

The car slowed down for the stop light. I bet I am going to hit them all red today.

And why are devils always red and angels always white? Perhaps this is an Angel of Death. That sounds much better than “the Grim Reaper,” I think.

The brown pinstripes yielded no clues. The light turned green and the short train of cars inched forward in the snow, past the funeral home. Irony. I am sitting between Death and a funeral home. I paid particular attention to the space between my bumper and the Toyota in front of me.

Why DO we call it a funeral HOME?

The left turn signal in front of me started blinking. This drive is taking forever! I braked and prepared to sit behind the Toyota until it could turn left into the daycare center.

The mother in that car must be picking up a toddler. My kids are growing up. They’d be okay without me.

I wondered if I was supposed to say something then, perhaps in a noble act of selflessness, say something like, ‘Why don’t you take me and not that young mother.’ But I didn’t say anything. I sat there with that brown-pinstriped S.O.B. next to me.

That’s when it happened. To say it was ‘like slow motion’ is wrong. It’s more like your brain is suddenly operating at a higher resolution. I saw the mom in a minivan in the daycare driveway wave her hand at the Toyota in front of me and then the mini-van tried to sneak a left turn in front of the Toyota and onto Burton Street. At the same time, the Toyota decided to gun a left turn between the oncoming cars and into the daycare center driveway. She hadn’t seen the mini-van mom wave. The oncoming cars. The snow. I pressed my foot down harder on the brake pedal. It played out like a script.

I can still see that brown wool-covered knee. I can replay the accident. But I have no memory of what happened after the minivan and the Toyota collided and were hit by oncoming traffic.

The next thing I remember is a police officer knocking at my window. “Are you okay, ma’am?” I nodded. “Okay, please clear the area.” He pointed across the hood of my car. Another police officer was directing traffic. She motioned me into the right lane.

At the next stop light, I had to do it. I looked in the rear view. And in a strange bionic-eye moment, I saw him again, standing at the side of the road. He tipped his brown felted Fedora.

Years ago I played with this idea: that we have some choice in the ultimate decision about dying. Back then brushes with Death were the stuff of short stories. I could avoid staring Death in the face – even when Dad died.

That Sunday morning Rand rolled over in bed complaining of terrible pain. He never complains about that. It took about ten minutes for Dr. Google, WebMD, and me to determine the most likely cause: kidney stones. So, instead of heading to Trillium Woods Hospice Center, I was once again in the (by then familiar) hospital emergency room with my husband. Why is cell reception so rotten inside hospital ERs?

By the time I got around to checking my voice mails, it was almost old news. Mom’s voice was sad but steady. “… And how is Rand doing? Talk to you soon.” End of message.

“Soon” happened late in the day – after tests and meds and discharge, after collecting the kids from their respective hosts, after “Dad” had been whisked away to the funeral home. Ironically we chose that same funeral home – the one on Burton Street half way between the campus where I worked and our house on Griggs Street.

I know the last thing I said to Dad on the Saturday before: “I love you.” I never said good-bye. At the funeral service, I refused to stand next to the open casket. From a distance you could see the waxy face, the fluffed hair, the head resting on a satin pillow. There was no Dad there and Death had long departed.

The following week Mom needed open heart surgery; there was no delaying it. With apologies to those who have had kidney stones (because I know that it IS very painful), Mom’s heart crisis easily overshadowed our kidney stones ordeal. We went from care management for Dad to care management for Mom. We had no time to corner Death – no time for screaming at him or crying or even getting one good look at his face.

Last year everything changed.

We celebrated our 34th anniversary with dinner at a restaurant on Friday night and duck pin bowling with our kids the next day. Penny was nearing the end of her palliative radiation treatment, and we were working to schedule the placement of a GJ tube that could relieve the pressure, pain, and nausea associated with blockages, and provide an additional means of nutrition.

When we celebrated last January, we were pretty sure it was going to be our last anniversary together. In December we had begun serious conversations about when to transition to hospice care. There was still a glimmer of hope that Penny might be able to regain enough strength to try another clinical trial, and Penny seemed up for one more go, even though she had already been through what seemed to be the most promising clinical trial option with no benefit, was struggling to maintain her weight, and had been experiencing varying degrees of pain and nausea since the previous July.

When we married, we decided to write (and memorize) our vows. For the most part they were pretty traditional. We left out the “obey” part, but kept in “cherish”. And we used the more optimistic-sounding “as long as we both shall live” rather than “til death do us part.” Turns out “til death do us part” is a more accurate description.

From time to time, Penny would mention that she had always imagined things differently. She had looked forward to getting old together, and had always assumed eventually she would be the caregiver for me. But we don’t get to choose these things. As Gandalf (from J.R.R. Tolkien’s The Lord of the Rings) said, “All we have to decide is what to do with the time that is given us.”

Penny’s decision was to do as much as she could, and be as creative as she could, whenever she could, for as long as she could. And to spend as much time as she could with and for the people she cared about: family, students, colleagues, friends.

Over the holiday break, I began going through the files on Penny’s laptop. It’s an “interesting” project. The folder structure and naming “conventions” add to the challenge. It took me several hours to locate one of the files I knew must exist in there somewhere (because I have a hard copy). And another hour or two to figure out which of several files was the “most final” version… I think. There must have been at least one more version than I’ve been able to locate because the formatting of the hard copy doesn’t exactly match the version I’ve found.

One of the documents I found along the way contains a series of essays Penny wrote early in her cancer journey (roughly 2017, I think). It’s entitled Cancerland: For my fellow residents and the people who love them. I’ve decided to share them as blog posts here. You can decide whether they are the sort of thing you want to read or not.

Before the first essay there is the following description of Cancerland.

About Cancerland

You don’t want to go there. Short-term visitors and life-long residents never choose to immigrate. We are forced here by circumstances, by life, by the results of the CT-scan and the doctors’ diagnosis. Living here brings you into contact with characters we otherwise avoid: suffering, hopelessness, death. You can get trapped pretty easily in the Kingdom of Grief which borders on the Mire of Me. But this isn’t a Pilgrims Progress for cancer patients. Cancerland is a collection of stories or snapshots of how I got permanent resident status in this place where no one wants to go, of how my ideas about life and death are changing, plus some tips for residents of Cancerland and their friends. I hope that somehow these reflections on my crash landing in the world of cancer can help some others, struggling to make sense of it all, and offer a glimpse of the complex mix of questions and emotions that are part of living with cancer. Together with millions of others, I’m muddling through as best I can. Welcome to my small corner of Cancerland.

She shared these essays with me and few of her friends, including her writer’s group, back when she was writing them. But as far as I know, she didn’t circulate them very widely, despite her hope that they might help others.

But it’s not too late, so I’ll post the essays here periodically, maybe roughly weekly. Feel free to read, or share, or ignore.

Then the day before yesterday I received an email from our church treasurer. She is in the process of closing the books on 2024 and wanted to give me a report on Penny’s memorial fund.

You may recall that we requested that people donate to a memorial fund rather than send flowers. I’m pleased to report that we collected $5000. The Verhulsts have already received $2500, much of which is being used for some much needed vehicle repair.
The Boehms will be receiving $2500 soon. Thanks to all of you who contributed to these gifts.

One week from today, I’ll be flying to the Dominican Republic with seven students and some colleagues from Calvin University’s Clean Water Institute to work with the Verhulsts and community leaders in the region where they live to explore ways of providing more and more reliable water to the people and communities there.

This trip has been several years in the planning. Last year I had to back out of a similar trip as Penny began a last attempt to improve her health to the point where she might have been able to try another clinical trial. She did daily radiation treatments in late December and early January and had her GJ tube placed later in January.

Yesterday I began assembling a few things in preparation for the trip. One of the Christmas gifts she gave me last year for this (and other) trips, has been sitting in a corner of our bedroom for a year, waiting. It’s now in the staging area. The note attached to another gift – “For Randy. For wherever life’s adventures take you.” – turned up as I was wrapping presents this year. It serves as a reminder of all the adventures we had together, and of the fact that I’m “flying solo” now.

Time will tell where these new adventures take me.