Being There

And sometimes it goes the other way

Being There

One of the most intimate interactions I have with Susan is being in her company when she processes her feelings, either profound sadness or joy. Witnessing joy is pretty easy.  When Susan walks out into her yard and puts her face into a large drooping flower (whose name I always forget) she derives such pleasure from looking, smelling, and touching it. And I mean blissful joy. Simple, easy, honest bliss. She smiles, her face glows, eyes sparkle, she looks at me to share the moment. I get some of it, some of the bliss, but I marvel and enjoy watching her come to such a state of beauty. Of late, in the back of my mind I feel a bit of sadness that these moments are now limited. Sometimes Susan does too, not often, as that distracts her from the present.

At the Mary Pratt exhibition, Ottawa 2015

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On Pain and Palliative Care

This morning I was reading The Art of Death by Edwidge Danticat. In it she recounts how her own mother refused all pain medication as she was dying of ovarian cancer because she didn’t want to be “gaga” at the end—even though she was in enough pain that her fists were constantly clenched. That reminded me of this post I’d been meaning to write for a while. I hope it might one day save you or a loved one a great deal of unnecessary suffering.

I’ve never been a big fan of the pharmaceutical industry, but in the past few months I have certainly come to appreciate some of its recent advances in pain medication. I used to imagine that I wouldn’t want to be on strong painkillers at the end of my life either, because I also want to be aware and able to communicate. However, there are now wonderful painkillers that mean we don’t necessarily have to make a choice between physical suffering and full, lucid consciousness.

I have been on a high dose of narcotic pain medication for months now. Fentanyl, to be precise. Yes, that’s the same drug that has tragically been killing so many who abuse it. Used properly at the right dose (it’s given as a patch, a small sticker that adheres to the skin and releases the correct dose at a constant rate), this drug allows the patient to be fully functional while completely erasing severe pain. Truly, it is a wonder drug. My brain works as well as it always has (to my dad’s amazement when he wanted to argue with me about climate change!). I’m not drowsy. I am fully attentive with all my reflexes intact. I can even still drive. In fact, I can’t tell that I’m on any drugs at all, nor can anyone interacting with me. All the writing I’ve done on this blog has been while on fentanyl. Most importantly, not being in pain has meant that I can enjoy time laughing and talking and crying with my loved ones. It means I can still enjoy the things that make life a pleasure. It means I still have the energy and focus for meaningful work. Pain is exhausting, physically and emotionally. Excessive pain does not allow one to be fully present to others. Dying in pain is not a better or more authentic death.

Our culture, unfortunately, carries a lot of baggage about pain. Most people have some ambivalence about treating pain, and all sorts of complicating notions mess up our approach to pain management. Many of us are stoic or believe in the value of being tough; for some, this is an important part of their self-concept, and admitting to pain can be perceived as weakness. Some people believe they deserve suffering. Others believe it is god’s will. Some are afraid of the power of narcotics, or think such drugs must be bad because of their association with criminals. Many people, like me, feel somehow guilty for asking for more painkillers, worried about being doubted or judged. There is also a lot of anxiety about addiction to pain medication, though studies show that medicating for pain does not lead to addiction the way recreational drug use does. Addiction is also a non-issue for palliative (dying) patients—so if any doctor expresses that concern, do set them straight.

I was the kind of person who never even took over-the-counter pain medication when sick or injured. I would just tolerate pain and trust my body to heal itself. It took a couple of persistent nurses and palliative care specialists several weeks to convince me that I should be experiencing zero pain as a terminal cancer patient. (In a medical context, pain is usually rated on a scale of one to ten.) And now I get it. When I was in pain, I was less active. I was less cheerful. Life was less fun. The pain didn’t add anything positive to my life. In fact, it drained me of energy and slowed my healing post-op. Witnessing my pain also distressed my loved ones. Pain has no value at the end of life, and serious effort should be made to avoid it. If your loved one is in this situation, learn how to advocate on their behalf, insisting that pain relief be prompt and complete – no half measures. As one nurse told me: ignore what the bottle says and just take what you need when you need it. Insist on a prescription that allows this. A person’s size and sex should not determine the dose, as each person’s body metabolizes these drugs in its own way. I only weighed about 115 pounds when well, yet my metabolism is fast; I have had to increase my dose to five times the original prescription and increase the frequency.

I am extremely fortunate to be under the care of one of the best palliative and pain specialists in North America. It is terrible that many hospitals and communities don’t offer any palliative care at all, and that even among those that do, the pain management practices are often outdated or insufficient. Carefully dosed pain medication should leave the patient comfortable, pain-free, and hopefully alert. If a particular medication isn’t well-tolerated, another should be tried. In the opiate category there are several different drugs that are some of our most effective painkillers, including morphine. These drugs don’t agree with everyone, unfortunately, though most of their common side effects, such as constipation or nausea, can be easily managed with other medications. And there are some types of pain that don’t respond well to opiates but do respond to other drugs. Don’t give up until the right medication has been found.

Many people believe that palliative care is only for patients in the last stages of a terminal illness. The best advice I received soon after I was diagnosed was to seek palliative care right away. Any patient with a stage 4 cancer or terminal diagnosis is entitled to palliative care regardless of their current health status. Getting palliative care will not hasten death. In fact, recent studies show that those who seek early palliative care actually live longer. My oncologists were not interested in my pain and never offered any pain management. When I mentioned my pain, they just nodded. This is quite common, as oncologists are usually surgeons who are focused on curing by cutting out tumours or prescribing chemo, not addressing symptoms. My palliative doctor took care of my pain first thing and is always ready to adjust my dosage as needed. This has immensely improved my quality of life over the past few months.

I think fear of pain is one of the reasons people have so much fear of cancer and death. We need to revise that fear and our expectations about terminal cancer since these advances in pain management. It really doesn’t have to be as bad as we have imagined or heard it can be. Those horror stories should be a thing of the past. While I expect to experience more and different pain as my disease progresses, I am now quite hopeful that most of that pain will at least be tolerable with the right medication, just as I am also hopeful that my death will be conscious and peaceful.

On Motherhood

I’ve been a mother half my life. Nearly a quarter century, and most of my adulthood. In all that time, I have been trying to figure out how to mother in a way that feels right. Or at least with my sanity intact. I made things especially hard for myself – though not deliberately. I was a single parent pretty much the whole time, so I rarely had practical help or other support. I also had powerful maternal hormones that wouldn’t allow me to leave my babies in daycare or let them cry themselves to sleep. So I was tired. And I had creative aspirations that were an enormous struggle since I had no time or help or money to be able to pursue them.

Though I did so by instinct rather than to subscribe to a parenting style, my mothering was what has been labeled attachment parenting. For me, this was simply what felt right. I gave birth at home because I didn’t have a lot of faith in doctors being respectful of my birthing body. I nursed my babies past the prescribed first year because they weren’t ready to be weaned. I kept them home with me because I knew no caregiver could love them the way I did, and it seemed to me that babies and young children need love above all else. For many reasons I won’t go into here, I don’t think school is a good idea, so I didn’t send my kids to regular school for many years of their childhoods. All of these choices were difficult ones, as they put me at odds with social norms. And that meant there were never adequate support systems for us. In fact, I generally had to create my own supports: playgroup, homeschooling group, alternative school, etc. It took a lot of energy. I was exhausted and frustrated, as I was never able to fully meet my own and my children’s needs.

But that was only part of the struggle. There were all sorts of emotional, social, and cultural dimensions to motherhood that I had to work through as well. I wasn’t mothering the way I had learned to from my own mother, who was a traditional stay-at-home mom who availed herself of the revolutionary modern developments of her time, such as formula–which I can’t blame her for. I wasn’t mothering the way my contemporary peers were mothering, with daycare and material comforts and conveniences to replace a mother’s care and labour. That meant I had to figure things out on my own. And I had to work harder. In retrospect, I can see it would have been wiser to compromise at times. Fortunately I was able to develop a community of support with like-minded mothers, so I wasn’t too alone. But still, motherhood brings enormous emotional and spiritual challenges, which were further complicated by my creative pursuits. I felt a need for ancestral models and archetypes and narratives that would help me navigate this difficult terrain and understand the deeper meaning of this endeavor.

I read Jungian theory and went to therapy. I researched and wrote about my maternal grandmother, who had been killed by my grandfather just before my birth; this broken maternal line felt significant to me, somehow—an emptiness that I could never fill. I read biographies of women writers and artists, but so few of them were mothers. I delved into ancient Minoan culture and feminist revisionings of other women-centered, goddess-worshipping societies. I searched all over for clues about how to do this seemingly impossible thing: be a woman, a mother, and a creative person in this world. There were very few stories of such women. And almost every story was, in the end, about failure. About how women could not, in fact, be all those things at once and survive while sane, happy, free. Maybe there had been such women—I know there have been—but their rare stories have even more rarely been told. The line of inheritance or transmission from them to me has been broken. So I don’t know how they might have met all those challenges, maternal and creative, and met their own needs. I wanted a narrative of how to not just survive, but to thrive. Yes, I did want it all. And then I wanted to tell the story of how I did it, to start a new narrative for other women to follow. Sadly, that hasn’t happened.

I was working on a poetry manuscript exploring all this when I got sick. That project had started with poems about the challenges of mothering my young son through addiction. Part of this work involved researching other stories about mothering, especially the real challenges of mothering, but I could hardly find any in all of Western culture (including art, literature, film). I went all the way back to the bible, then to Greek mythology. I also looked at Indigenous creation stories. That got me started on writing about the first mothers, about Eve and Demeter and Sky Woman too. I started working on this again last week, though it’s unlikely I’ll have time to complete the project (I do have help available to me). Yet it seems to me now that it is so important to tell these stories of motherhood. There are so few of them, and stories are what guide us through life as humans. Without stories we are lost, as I was for so much of my motherhood.

A year ago, I started on a new phase of motherhood: I had to learn how to be an empty-nest parent. At 18, my youngest son moved out to live closer to school. My older son had moved out four years earlier, at the same age. I was sad, but also excited. I moved into a new home that was just mine. The kitchen stayed clean; it was quiet and peaceful, a lovely sanctuary to come home from work to, or to welcome my boyfriend to. I set up a studio in a spare room and imagined all the creative work I could do. But this phase also meant redefining myself once again. What does it mean to be a woman in this world? The answer seems to change so often, and generally in relation to others. I was turning fifty. I had only myself to look after on a daily basis. I had time and space to myself, a new freedom that felt wonderful after so many years. I could just be me. Maybe I could finally be that creative person who had been waiting almost a quarter century!

That wondrous phase didn’t last long! Instead, I am in this final phase of motherhood. One of the biggest lessons of mothering has always been the letting go. Every phase has offered its version of this challenge. I remember that as a mother who was so attached, I was frequently cautioned about this by those concerned that my babies wouldn’t detach from me. But I think that is when we can see how attachment parenting works to achieve the goal of creating independent, well-adjusted adults: the child’s emotional needs have been so fully met that they are ready, able, and excited to go out into the world on their own. I see this with my own boys, in any case. They were both ready to move out just before turning nineteen. I was perhaps less ready than them, but I accepted their choices and let them go. And while we enjoy getting together now, they have very little need of me. Sometimes this has made me sad, because I would like to see them more. But now it’s an enormous comfort to me as I approach death. I am especially glad now that my younger son has had this year on his own. He is not losing his home with my death, and I am reassured to have seen that he can indeed look after himself. If he’d still been living with me and needing his mom on a daily basis, this would have been a far more wrenching experience for both of us.

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Proud me (with crazy hair before complete baldness!) and my beautiful boys on Nathan’s graduation day in June (photo by Roy Cross).

So while part of me wants to spend every possible moment with them, I told them right away –the day I told them that I was dying– that I wanted them to keep on with their schooling and their regular lives, and just visit me when they had free time or needed to. I have been so glad that they have done this. It has been such a solace to see them dedicated to their educational pursuits, happy with their girlfriends, going out and having fun now and then. My youngest son has now graduated from college and launched his professional career with performances around the world. I miss him, but I am so pleased to see him establish his career. This way, I can see that he really will be okay, a competent and independent young man, when I am gone. I am glad though, that he’ll come home during breaks! Meanwhile, my older son’s continuing hard work has yielded the academic achievements that will help him gain admission to grad school. Finding the balance between spending this precious time together and their independence is tricky! No mother wants to be clingy or demanding of her children, so I let their need for me determine their visits as much as I can. And the less they need me, the easier it is to let go. Motherhood for me has always meant being in a state of conflict: meeting my own needs versus meeting theirs; indulging my maternal needs versus my creative or personal needs. There’s not much that makes me happier than being with my beautiful boys, but there’s also not much that makes me happier than knowing they are excited about living their lives in such positive ways.

Sometimes I think of children as beings that are just lent to us for a time. They are entrusted to us to be raised and cared for, but then we have to hand them back to the world to live their own lives with their own purpose. Though I certainly learned a lot about myself and the world in the process of raising my boys, it was never really supposed to be about me. While I’d hoped for some time to finally nurture my creative self now that they are so beautifully grown up, that’s not how things have turned out. So now I am handing them back. This is a bigger letting go than I had planned, but I have faith that they will be okay.

My boyfriend’s blog

My boyfriend Roy Cross, who is a super filmmaker and writer, has started a companion blog to this one. He wanted to enter into conversation with some of my posts and share his experiences and perspective in this death project. You’ll find his first post, Telling the Kids, here on Roy’s blog. As he observes, “For nearly everyone who finds themselves in Susan’s shoes there is someone walking in mine.”

On Sadness

My friend Miriam asked me to write about sadness, so I’ll try. I’ve mentioned being sad a couple of times, but not much, considering the circumstances. I guess it hadn’t seemed worth remarking on, since it’s so obvious and ubiquitous. Yes, I am sad. Sadness is the expected, perfectly normal, reasonable response to loss or imminent loss. I love life, I love my life, and I do not want it to end. Yet the amount of time I spend being sad is, I think, much less than for my loved ones. My sadness is there all the time, just below the thinnest surface, but it doesn’t break through that often, and then usually briefly. Sometimes just once a day, for less than a minute. Now and then I’ll get sentimental with someone and indulge in an hour of weeping and make a big pile of wet kleenexes. I’ve had a few down days, usually when I’m alone. But altogether, sorrow occupies a very small portion of my time. I have many more hours of being happy, or resting, or being occupied with something.

So what can I say about sadness? Perhaps my loved ones should be writing about this instead of me. There are different sorts of sadness. Grief, melancholy, sorrow, depression. I have grief, but most of my sadness is for the suffering of others. I am sad for my loved ones’ sadness. My children are losing their mother, the person who loves beyond everything. I am heartbrokenly sad that I am leaving my youngest son essentially orphaned. That my older son loses not only his mom but a close friend. I am sad that my boyfriend will be lonely without his lover and most intimate and trusted companion. That my parents will be grieving a lost child, even though I did reach middle age. That Miriam is sad because she will be losing one of the people who knows her best. I am sad for my beloved cat, who probably needs me more than anyone. Each of my loved ones is losing someone who occupies a particular space in their lives, whose role gives them something specific. So my sadness is mixed with some gladness that I was at least able to give all this to others. I have been blessed.

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My sad cat, Piggy.

I am also sad because I am losing everything. Some of my sadness is grief for things I have already lost, like my work and gardening and runs up the mountain. But most of my grief is about future loss. It is for things I will lose in death or things I’m imagining I might have had in the future. But of course, since I’ll be dead, I won’t be feeling that loss. I actually still have those things now, such as my children, or am just imagining them, like grandchildren. If I am consumed with grief for things I still have, then I am not enjoying them. And I feel silly grieving things I might have had—though that hasn’t stopped me from shedding bitter tears about those grandbabies I’ll never hold. Our emotions don’t always obey our reason! Because grieving means inhabiting a space of loss, of death, before I must, I push myself to embrace this moment and the joy and beauty it brings. That requires a bit of discipline, and often I fail. But usually I do remember or am reminded to just be here. I know it sounds trite, but this moment really is all any of us ever have.

While the sadness of my loved ones is also anticipatory, in a way they are just getting ahead in the work of grief. They’re going to be going through that in any case, and working through some of it now may help later. I’m the only one who will really be spared the grief. I do hope, at least, that they can make the most of their time with me now, and allow me to do anything I can to alleviate that sadness.

But what can I say to console them in their sorrow? I don’t know. I wish I knew. If they are sad on my behalf, I could remind them that I am suffering relatively little now, and that I won’t be suffering once dead. That the space I leave in their lives will be filled with others, I hope very much. Not exactly in the same way, of course, but in some other wonderful way. Maybe someone who gives them things I couldn’t. And that my love will always be there for them; love, I believe, is our immortal part. That I won’t ever be completely gone because that love is still there.

But really, I can’t take their sadness away. I can hope there is more sweet than bitter in their pain, but I can’t prevent the suffering. They will suffer their loss, each somehow, hopefully, finding comfort in their own way. I know from this experience that others reaching out does help, so I do hope that you will let them know you too are there for them, and offer them some love and comfort. It might not seem like much, but it helps.

On a new normal

This is a strange space to inhabit. I’m not feeling that sick at the moment, and in my dreams I am still healthy. So I wake most mornings feeling perfectly fine. The emotional intensity of the first weeks after my diagnosis has diminished. My time has stretched longer than it might have. The better I feel, the stronger my impulse to live life as I used to, choosing my day’s and the season’s activities with a tempered expectation of longevity. I have to remind myself sometimes that I have cancer, that I am dying. This is hard when I feel well. I was blessed in this life with a great deal of vitality, so even with it now reduced, my natural mode is to be excited about all I might do in a day, in a lifetime. My garden beckons me to tend it. My studio is full of things to make art. My head is still full of questions to research and ideas to write about.

I spent a bittersweet afternoon in the wonderful City Lights Books in San Francisco last week: how inspiring to be in a room full of poetry, to scan all the shelves of brilliant fiction and non-fiction! But I won’t have time to read more than a few books now (how to choose!), let alone to write.

Those choices about how to spend my time, which were always so difficult for me, are even more fraught now. As I’ve settled into this new but temporary normal with the chemo slowing my disease progression, I feel there are more things I should try to do. Finish that manuscript. Start that charitable fund. But often all I want to do is enjoy my garden.

How does one live fully while dying? Because we are all ultimately on the road to death, this question is relevant even while still healthy.

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Rabbit murals in Berlin. I loved these representations of life and death, just around the corner from each other! (Poor quality photo by me, five years ago.)

Nowadays I try not to bring too much pressure to each day, wanting to avoid that sort of stress. I recently took a vacation, a week away with my boyfriend and my sons. I’d never done this before; my last big trip was over five years ago with my entire extended family and before this relationship. Someone called this last vacation a trip of a lifetime, but I didn’t want to think of it that way. I didn’t want expectations that would be too high to meet. I didn’t want to be disappointed. I feel that way about most things now. I’m okay with things being less than perfect, with flawed beauty, with irritations in my bliss. That is the way life is, after all. Never perfect—or at least not for long!

Mostly, taking each day as a gift is my main strategy, though far from an automatic attitude. It takes effort, reminders. A regular meditation practice would certainly help. But I’ve never been very good with maintaining structure or routine. I can see why so many spiritual traditions have some sort of daily ritual along with seasonal ones. It keeps people—we’re so easily distracted!—faced in the right direction. Without that, I’m prone to losing days, weeks, sometimes longer, to a dulled sensibility, joylessness, even pettiness. Or perhaps this variability is just a normal, cyclical part of being human. I don’t know.

It’s always hard to adjust to change, though change is the one constant in life. Nothing ever stays the same, even though some moments seem to stretch out for a long time. So I try to live this new, temporary normal for this little while. A small flat period in this big transition towards death. And I try to gently make it as meaningful and worthwhile as I can. Which isn’t so different from the way I’ve always lived.

On my disease

I hadn’t wanted to discuss details of my disease and current health status here, since I prefer to focus as little of my attention as possible on the medical part of this ordeal. My body demands enough attention and care and medication as it is, none of which is fun, and I have much better things to do when I am able.

But I know some of you are concerned and those closer to me have questions that fuel worry. Usually more information helps reduce anxiety, but because in my case none of the information is particularly comforting, I have refrained from sharing details. However, if it helps to understand more, I offer the details below. And some people are simply curious. If you’re not, you probably won’t want to read this, as it’s full of detail that really isn’t relevant to anyone but me. (More posts of general interest coming soon!)

I also still find myself getting annoyed when people offer advice that is not relevant to my condition, and I’m hoping to discourage that. (I think invalid advice is irritating because I have to either politely ignore it or waste my time and energy explaining why it doesn’t apply to my situation—all while thanking the person offering it for their good intentions. I suppose I still have an excess of pride that is offended at the implication that I might be ignorant or might not have done my research.) So here is the explanation.

me in Muir Woods

A recent photo of me in awe at the redwoods in Muir Woods, California. By Roy Cross.

I have a high grade, stage four uterine leiomyosarcoma. This is a rare and extremely aggressive form of cancer. It is not curable, and it’s terminal. Mine has a particularly fast growth rate. The best treatment for this disease is clean surgical excision that doesn’t disturb the tumour and scatter the cells around, for this sarcoma spreads and takes root and grows elsewhere very readily.

Unfortunately it was not possible for all of my tumours to be removed. Nor was it possible to remove them all cleanly. The original uterine tumour was already enormous (like a cantaloupe) and had spread and adhered to adjacent organs. I was scheduled for a complete hysterectomy, and simply removing the organs with the tumours would have been ideal. But the surgeon told me afterwards that once she saw how extensive the tumours were, she wasn’t sure she would be able to get them out at all; she thought she might have to just close me right back up with all that still inside. (I was close to five-month pregnancy size by then, so that would have been horrible.) She did her best, however, scraping out what she could, removing everything I could live without (like my appendix and many lymph nodes) along with my reproductive organs–this is inelegantly called “debulking”–as well as a section of intestine that was close to completely blocked. But there was a three-centimetre tumour embedded in my bladder that they couldn’t get to. In any case, it was clear the excision had not been clean: there were certainly lots of sarcoma cells all through my abdomen and pelvis, and these wouldn’t be wasting any time in developing themselves into more extraordinarily fast-growing tumours. As well, we were already monitoring small nodules in my lungs. After surgery, she was blunt: I would die of this. Treatment might extend my life by months only.

In retrospect, I know that my first symptoms of this disease appeared over Labour Day weekend last year. I had a newly developed hernia in the same area (I can laugh now at how offended I was by this minor health complaint!), so I attributed the strange pelvic pain to that. The pain went away after a few days, and mostly I was fine until December. I recall going for a nice hour-long run on a Thursday in the country, feeling so grateful for my good health at fifty—a milestone I’d reached in November. The next night I was experiencing some pelvic pain again. I spent the rest of the weekend on the couch in strangely variable pain. By Monday my abdomen was distended too, and by Tuesday I could hardly walk. So I went to the doctor, who sent me to emergency so I could get scans right away.

The unfortunate thing about this disease is that even in scans it looks just like the benign uterine fibroids that are so common to women and don’t usually require any treatment. The extremely rare sarcoma version can’t even be diagnosed without surgical removal—except in cases like mine where it grows so wildly it clearly is something else. Because I had just turned fifty, I was also expecting strange things to happen with my hormones and reproductive organs, so I wasn’t alarmed. Assuming it was just a fibroid, my gynecologist told me to make a follow-up appointment in a year, revising that to six months when I expressed some concern.

In January, I discovered a small lump protruding from my lower abdomen. Lying down, I could see it (I didn’t have much belly fat), about the size of a plum. I thought it was an ovarian cyst because of the location, but it was actually my uterus being pushed there by the tumour. By the next week, it was the size of an orange. I couldn’t get another appointment with my gynecologist for a few weeks, so I went to my GP in the town where I had my country home. He was alarmed and got me in to see a gynecologist at the local hospital the next day. She was also alarmed (she kept exclaiming “mon dieu!” (my god) throughout the ultrasound) and immediately called a gyne-oncologist at a bigger university hospital in Sherbrooke, quite far away. She noted the risk of sarcoma. But that referral got lost somehow, and I wasn’t called for an appointment for another ten days.

Meanwhile, the thing kept growing. I managed to get an appointment to see my gynecologist sooner, and she referred me to the gyne-oncology team at the Glen, the new McGill University super-hospital in Montreal. It was clear by now that surgery was without question urgently necessary, and I was going to go with whatever hospital could get me in first. But the wait was still going to be weeks. February was a frustrating month. We got through it with jokes about pregnancy and Aliens. I went on medical leave halfway through the month as I was in too much discomfort to function normally. Finally I got a surgery date, March 8.

By then I was seriously anemic and in respiratory and cardiac stress. The surgeon had me admitted a day early for a heart ultrasound; she wasn’t sure I would be fit for surgery. On admission, my resting heart rate was 123 due to fluid build-up around my lungs and heart. I was pretty sick. The tumours were growing so fast that they were outgrowing their blood supplies and necrotising, bleeding into my abdomen to cause pleural effusions, and causing all sorts of havoc. This necrotization is what had made me ill in September and December. The great variability in my symptoms had made it very difficult for me to judge the seriousness of my condition—though it might have tipped off the doctors earlier.

Once diagnosed post-op, I was advised by others with this disease to see a sarcoma specialist, and my father was very anxious that I go to Memorial Sloan Kettering, the international cancer centre in New York. There I saw one of the only doctors who specializes in this precise disease. She didn’t have any more hope to offer me and simply recommended the chemotherapy protocol (which her research had established) proposed by the Glen team. I was interested in immunotherapy, but no trials have been successful with this disease. Nor are there are any open clinical trials for other chemotherapies. She noted that even with complete resection, recurrence is 100% with this disease at this stage. Even at earlier stages, recurrence is expected, though some people can go a year, sometimes even many years, before that happens.

A month after surgery, I had another CT scan. That three-centimeter tumour had already grown to nearly eight centimeters, and there were a couple of new tumours at around three centimeters (diameter) each. In total, I already had about fifteen centimeters of tumour in my abdomen, up from just three centimeters in one month. As I said, this thing grows fast. I was not surprised, having witnessed it growing visibly from the size of an orange to a cantaloupe in the month I was waiting for surgery. Luckily, none of the new tumours were yet doing too much damage: they weren’t causing bowel obstruction, they weren’t in my liver or bone. They do cause considerable discomfort and pain when I move around too much, so they have reduced my mobility. But sufficient pain medication helps me get past that, so I can still go for slow walks. I can no longer do any real exercise or gardening though, which I very much miss.

That crazy growth rate was what led me to try the prescribed chemotherapy (gemcitabine and docetaxel), despite its small chance of having any effect. I have just started the second half of the recommended six three-week cycles of chemo. My last scan showed that the chemo seems to be working to slow the growth. It’s not shrinking the tumours as the doctors had hoped, but at least it’s giving me a bit more time, which I very much appreciate, especially at this time of year. It’s expected that the tumour growth and multiplication will resume at its previous rate once this chemo is done. My gyne-oncology team may propose other chemo treatment options after a rest period, though all have a low success rate. The tumours are not operable, nor is radiation an option with multiple tumours.

So that’s where I am now. The modest success of the chemotherapy has meant adjusting to a new but very temporary normal. I’m only a bit sick with chemo side effects (I’m very fortunate to be tolerating it so well): mild nausea and heartburn, both controlled with medication; sensitivity in my fingers that makes typing slightly uncomfortable; an itchy rash a couple of times; a bitter taste some days; and mild fatigue and general unwellness on occasion—with only one day so far of serious, sleep-all-day fatigue. I’m also dealing with the discomfort of lymphedema (swelling due to removed lymph nodes and perhaps more tumours), which means I need to be horizontal when possible. All in all, I’m living almost –about 75%– as usual at the moment. However, even though it doesn’t quite feel like it, I also know I’m dying. When the chemo stops in a couple of months, the tumours will grow and spread, and I’ll get very sick again then die.

Unless, of course, there is a miracle of some kind. But rather than count on that, I’m preparing for a peaceful end.

On what to say to someone who has cancer or any other terrible or terminal illness

We are all shocked and upset when we hear the bad news of another person’s diagnosis. We want to express a whole bunch of difficult emotions, but there truly aren’t adequate words. Most of us are worried we will say the wrong thing, and the last thing we want to do is cause harm. Sometimes, because we’re upset, it takes a long time to be able to say anything at all. That’s okay. I am still getting first messages from people who heard my bad news two months ago. Your kind words will be appreciated whenever you find the courage, and your caring intentions will be clear, even if not expressed as elegantly as you might hope. And it’s not necessary to say a lot.

First of all, most of us want to say we are sorry, because indeed we are. Everyone wishes the circumstances were otherwise. I think expressing this is welcome by anyone who is afflicted with any degree of illness or misfortune. I know I have appreciated expressions of sorrow and regret that I am ill because they are sincere, shared feelings: they create connection. Make sure, however, that your note isn’t ultimately about you and your distress. Ways of expressing this that I think are fine, though others may disagree:

  • I’m so sorry to hear of your illness/diagnosis/misfortune.
  • I was so sad to hear about ….
  • I so wish that you were not facing this challenge!

And if it’s your style, it’s also fine (to me, at least) to simply say “WTF! This sucks!”

Most of us also wish we could do something to help and feel frustrated when there is so little we can do to alleviate another person’s suffering. You can offer your general or specific services, if you are actually available, in ways like this:

  • Please let me know if there is anything you need, now or any time in the future.
  • I am here to help with … if you need me! Please don’t hesitate to ask. I’ll check in again soon.
  • I would be so glad to help if I can. Just tell me what you need.

Do tell the person you are thinking of them, praying for them, keeping them in your thoughts, etc. Equally, sending love, hugs, strength, courage etc. is excellent. I have enormously appreciated such messages. Indeed, they have lifted and sustained me countless times over the past months, always giving me warm feelings of being loved. That can never be bad!

It is also fine to express hope that a person is not suffering too much, hope that they are comfortable, getting the care they need, and are well-surrounded by loved ones. But refrain from asking for details of a person’s suffering unless you are close to the person or engaged in a longer conversation or visit. Notably, two people who both dislike me and suffer from narcissism or sociopathy or something of the sort (I don’t have the official diagnosis—and no, not everyone who dislikes me has something like this wrong with them!), almost immediately asked such questions. One asked right away how long I had to live; the other asked if I was in a lot of pain. I’m pretty sure they were not actually concerned for my well-being!

Another way to think of this is to make sure that you are offering the person something, not asking them for something. Offering something can mean being willing to open up space for a conversation about those details in case the person has a need to tell more of their story, which is often the case. But don’t do this unless you are able to truly listen and hear the story with empathy. If you’re going to be uncomfortable with the hard parts, don’t offer. If you’re good with this sort of thing, simply let the person know you are there if they want to talk. Or you can ask a gentle, responsive question if they do share.

And the big don’t: don’t offer advice. Seriously, just don’t. We all understand that the impulse to offer advice or stories of cures comes from a place of caring: you want the ill person to get better, and you have an idea that might help. But the afflicted person will ask you for your advice if they want it. Trust them on that. It’s probably okay to make an offer of a referral if you know a specialist to recommend for a particular issue, but make sure you are simply letting them know you have this information if they would like it. We’re probably all aware that there are alternative as well as conventional treatment options, and we do all have access to this internet thing, after all. Chances are pretty slim that you are in a position to know more than the patient, who has likely already sought ample medical and other advice, about her condition and needs. And chances are the miracle cure that worked for one friend will not work for another. Cancer is incredibly variable, and every patient’s cancer is unique, even if it seems to be a similar type to another. One friend says she wanted to punch people in the face when they offered advice regarding her terminal diagnosis (which happily did end in a miracle cure!). This ban includes alternative therapies, diets, psychological advice, or spiritual approaches. For me, this includes the advice to not give up hope or keep fighting. Many cancer patients are well-served by maintaining a hope-based approach. But not all of us have that sort of prognosis. For some of us acceptance is a better route (more on that in a previous post). Check first. Make sure that hope isn’t about your own discomfort with death or goodbyes (more on that in an upcoming post, possibly).

In short, don’t be afraid to reach out, even with just the simplest expression of regret. Even an emoticon that might show how choked up you are can be fine. If you are sincere in your feelings and being yourself (as long as you’re not a narcissist or sociopath!), chances are you will say something that will be deeply appreciated. And if you mess up, which is unlikely, chances are your good intentions will still be apparent and you will be forgiven. We have all had this struggle, and most of us don’t know what the right thing to say is until we have been on the other side. Even then, what might be right for me might not be right for someone else. But I hope these guidelines help a little.

Also, if you’re unsure of a person’s current health status but want to see them or invite them to some event, go ahead and say so. They will let you know if they are unable to see you or attend. It’s nice to get the invitation in any case! I’m not dead yet, so I’m happy to be included in celebrations and fun times when possible. I understand many people are uncomfortable with the terminally ill, cancer, and dying in general, so inviting someone in that state might seem like a downer. But many people in this situation have a good sense of humour about it, often we’re still physically well enough to go out, and some of us are quite cheerful when our symptoms are under control!

On Paths

Something about paths is so poignant to me. Naturally occurring paths, those that happen just because others have taken that way before: they are invitations. A dirt path worn across a vacant lot or cutting a corner, through the woods or meandering along the shore of a river—each tells us that this is a way worth going.

The special thing about paths is that not only do they offer a way, they make that way a little easier. Before the path, there was just that first person wanting to get from one place to another, and choosing the way to get there. Usually, the path is the most direct way with the fewest obstacles. Sometimes it’s the way with the gentlest sunshine or welcome shade, a spectacular view or secret delights. The path begins with that first person’s steps, but so faintly it’s almost imperceptible. Only as others follow the same way does the path become clear. Eventually, the way is defined, with each who takes it making it easier for those who follow. It’s like each person who takes the path is reaching back and extending a hand, saying come this way, I’ll help you.

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Photo by Roy Cross of Susan, pre-illness

The creatures too have their paths. In the country, in meadows and woods, I often find deer paths and follow those. The way of the deer is narrow and different from ours, but still, they find the easiest way, and sometimes make it easier for even me to follow. Sometimes I find the path of a smaller creature in the underbrush or leading to the most accessible place to drink at a brook. Even in the air there can be paths. Late this winter hundreds of crows roosted one night in trees near my home, and in the morning they all followed the same path, flying low right over my house, heading west to wherever it was they had to go.

Recently, in trying to explain to someone in French that I was terminally ill, I said I was on “un chemin vers la mort.” A road towards death. A path. We both immediately acknowledged that, indeed, we are all on that path. It’s just that for some of us the road is short. Or maybe what’s left of it is short. Most of us have no idea how long it will be, but regardless of its length and how much adventure we might have wanted along the way, we want that last bit to be as easy and comfortable as possible.

I am fifty and, in amazing good fortune, have never lost anyone close to me. However, that means I have no clear path to follow in my own dying, nor can I guide my loved ones on their paths of grief. We’re all having to figure this out as we go. But perhaps that is a good thing, since so many of the paths towards death that I have heard of or seen from a distance have looked so hard, even miserable. Nobody would choose to follow them. Indeed, this is probably why we do everything in our power to avoid death.

Of the friends I have lost, none has taken a path I would willingly follow. One was so depressed at his terminal sarcoma diagnosis that he wouldn’t see anyone in the last months. Another was in absolute denial of his impending death so never said goodbye to his wife or children, never even wrote a will. Another dear but long-estranged friend died alone and wasn’t found for many days. I have also seen and read countless imagined deaths in literature and film, but these always emphasize the tragic or dramatic. They make good stories, but they’re not what we want to actually experience. We need better pathways. Perhaps then we would have less fear of death.

Years ago I read an account of a death that described it in terms of quiet, spiritual beauty, likening it to a birth. That opened my mind to an alternative to the usual narrative. The idea that it was possible to have a peaceful, even joyous death has led me to envision the path I am on now. I want to make a path that is easy for you to bravely follow when your time comes, one that leads to courage and faith rather than dread and fear. I have already discovered that this path can be one of the most beautiful of our lifetime. While it inevitably brings great sadness and pain, it can also lead us to the most intense love and joy, to gratitude and serenity, and to the sweetest connections to others, to nature, and to all the mysteries of this vast and wondrous universe. We all know that we will reach death one day, but we have some choice in how we get there. I offer you this path to follow, in good time.

On Creativity

I have always loved art, both looking at it and making it. Since becoming ill (actually since the US election, which might very well be what made me sick), my need for visual art has intensified. If I had more time, I think I would devote much more of it to fine arts. I have always struggled over this choice of how to spend my time, as there have been so many things I have loved and wanted to pursue in this short life: music, literature, dance, social justice, research, education, gardening, spiritual practice. Devoting myself to one always meant sacrificing the others—and I lost much time in decision! And then with creative endeavours, I was plagued by self-doubt and fear of failure. Creativity requires risk-taking, which means a willingness to fail. How much more I could have done if I hadn’t been so afraid of not succeeding!

So I got sad again the other day when I was in my studio, looking at all the art supplies and craft materials I have gathered over my lifetime (just about literally: I still have some art supplies given to me when I was about seven, including an easel, water-colour paper, and set of oil pastels), and thinking about all the things I had planned to make with them, and hadn’t. Clearly, I had far more hope and ideas than discipline and confidence!

But on another day (hard not to be a little moody with sudden-onset menopause after a hysterectomy!) as I thought about all the wonderful creativity in the world, all the modest and grand efforts at making something beautiful or curious or original out of not much at all, no matter the scale or the audience, I felt joyous again. Suddenly it didn’t matter whether it was me making that bit of art or someone else doing it; it’s all part of the glorious mystery of human creativity that transforms the ugly, the ordinary, or the inert into something thought-provoking, expressive, awe-inspiring, or even just pleasingly decorative. This creativity is one shared thing among us, even if –or because– it takes so many forms in so many hands (leaving out anything exploitive or that does harm.) That day, I felt so connected to the art and creativity of the world that it felt okay that it wouldn’t be me making that art, or even seeing it. I was just so happy it exists.

So again, I am asking you to do this for me (because so many of you have asked what you can do), for all of us: make art, even if it is tiny. It can be so small that it is just placing one thing next to another, to see what effect it has. Make music, even if you are just humming a meandering tune. Or do something spectacularly ambitious, like write a concerto or paint a portrait of someone you love, even if you’re not sure it’ll turn out as you imagine it. Do all those good things that make the world a more beautiful, worthwhile place to live. This is our great gift as humans, one we can all participate in or at least facilitate or enjoy. And please, most especially, don’t let yourself be paralyzed by self-doubt and fear of failure.

To facilitate your creative experiments, I’ll soon be posting a list of unused art supplies to be given away upon my death, so stay tuned!

On Control

It seems every other obituary these days starts with “lost her battle with cancer” or some similar phrasing. So much of our culture’s response to cancer is framed in terms of battle. The message is that if you are one of the unlucky 38.5% of people to get cancer in your lifetime, you’re supposed to do everything you can to fight it. This is probably the appropriate response for most cancer diagnoses, many of which can be cured (some quite easily, even) or at least survived for many good years. Accordingly, much of the cancer advice that is routinely dispensed is about the right attitude to bring to that battle. I’ve heard many stories of people who made some change in attitude or approach to life and went into spontaneous remission, even without treatment. These are good stories, and I am enormously pleased for a couple of people I know personally who have actually lived this miracle.

But the underlying message in this perspective is that we are responsible for our health, including our illnesses and recovery—or our failure to recover. If you die of cancer, you have lost the battle. You weren’t strong enough. You failed. So if our attitudes and faith determine our health outcomes, this means we have not been positive enough. We have lacked hope. We were too angry or bitter or depressed. We didn’t meditate enough. We didn’t pray hard enough. Responsibility slips into blame.

I do believe our attitudes or mental/emotional/spiritual state affect our health. However, having an effect is not the same thing as having control. I am sure my positive attitude is affecting my well-being (I can feel that effect immediately), but that does not mean I can make it cure me. There are other forces at play in our world. Some believe there is a larger plan devised by an omnipotent god. Others believe random shit just happens. We can’t really know what these forces are—that’s where faith comes in. But I’m pretty sure we can’t control everything. Nobody says of someone who dies in a car accident that if only they’d had more faith, they would have beaten that head-on collision. Why do we try to make those with cancer responsible for the misfortune of their illness?

The simple answer is that we do this because we fear cancer as we fear death. We want to believe that we have control, that if we do everything right – right food, right spirituality, right exercise, right attitude, right supplements, right therapy, etc. – we won’t get cancer. Or that if we do, we can heal ourselves. Sometimes, we can. But not always. Sometimes, there’s another force deciding our fate. Not having control is scary. But believing we have full control is probably delusional.

I am one of those extremely fortunate people who, until recently, enjoyed splendidly good health. I have good genes. My whole family is healthy and energetic. There’s no significant history of cancer or other disease in my family. That’s just good luck. My grandparents lived far into old age even with terrible health habits. My health habits have always been excellent. While most people feel that a healthy diet means deprivation, for me eating wholesome, organic, vegetarian food has always been a pleasurable indulgence. I adore vegetables. I loved to exercise: one of my greatest joys was running up the mountain, and I was filled with gratitude for the good health that allowed it. (Truly, I always ran with a big, happy grin on my face.) So when I turned fifty some months ago, it occurred to me that, if I didn’t get some weird disease or have a car accident, it was very possible I could live another fifty years. But then I drew one of the worst cards in the cancer deck. That’s just bad luck.

I know many people are praying and hoping on my behalf for a miracle, and I am immeasurably grateful for this. I pray and hope that my luck will change too. And if attitude really could cure me, I’m an excellent candidate. I can hardly imagine feeling more blessed or more loved than I do now. I often feel that I am in state of grace. I am grateful for each day. I live with purpose and joy. I am usually cheerful and sometimes in spiritual bliss. Yet none of this can guarantee a miracle cure. It does, however, make these last days worthwhile! And that is what I mostly pray for.

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Me, being one with the lilacs! Photo by my dear Roy Cross.

On Work

A sure sign that you have an over-developed work ethic: one of your first thoughts upon receiving a terminal diagnosis is to wonder what special work is waiting for you on the other side. So much for resting in peace!

I really did immediately wonder that, even though I’ve never believed in that sort of afterlife. But it was somehow impossible for me to believe that there couldn’t be some reason for this loss—for me, the loss of everything; for my loved ones, the loss of mother, daughter, lover, sister. For society, the loss of any good work I had hoped to do. My very rational intellect knows that there cannot possibly be meaning in all the senseless suffering and loss of this world: war and genocide and starvation and violence are so horrible because they are so senseless—and avoidable, if only we could all learn to be decent. I know this. I know people who have faced the loss of innocent loved ones with no consolation that there was a purpose to their loss. One young grieving mother I know is rightly angered when people try to tell her that her baby’s recent death happened for a reason. And yet, the human compulsion to seek meaning is powerful. And that was my first thought: there has to be a reason for this.

Because I always have big projects on the go, that was the direction my thoughts took: there must be a really big project for me—a behind-the-scenes kind of project. Maybe even a special project to take down an evil president! Or help stop climate change! It had to be something pretty darned huge if I was to give up everything I love for it. But after a few weeks I realised that my new job wasn’t waiting until my death; it had already started. My new job is dying. A death project, if you like. It requires that I learn—and quickly, because I don’t know the deadline (how appropriate that term finally is!)—how to make my death worthwhile.

Realizing that dying is simply my new occupation has allowed me to go about it in the way I go about most of the work I undertake: with some research, writing, organising, some procrastination, lots of emailing, getting done what needs to get done, and lots of thinking about its deepest purpose. Because I have been blessed in recent years with work that I enjoyed and found deeply meaningful, work has been how I like to spend much of my time. It’s what I did/do (tenses get confusing when you’re dying!) with my life. Enjoying my work means I go about it cheerfully, with curiosity, with energy and interest. So taking death on as my new job means that I can, to a considerable degree, go about my life as usual, being myself, doing my work, all in good spirits (with occasional grumpiness) – though I do hope that deadline gets extended!

In a way, I see from this that dying really means living. This death project requires that I keep living in the way that I have always found meaningful until I simply run out of time. It does not mean rushing to get through that bucket list (a term I have always hated)! If you’re already living your right life, loving the people you are supposed to love, doing good work, being kind, having some fun, there’s not much to do in the face of death but keep on until the end. If you’re not living your right life, get to it!

While this job of dying entails all sorts of tasks (and here I again thank my dear sister Lorraine for taking on all the tedious ones), my death project is about sharing my own dying, mostly in writing. My goal is not simply to document the process, but to hopefully expand, even if only in a small way, the way we think about death. I hope that sharing my own approach to death as I discover it unfolding before me will help in some way—help us to stop avoiding and fearing death, help us to remember our great spiritual capacity to bring meaning to both life and death. I want you to know that death does not have to be the way you might imagine it, if you have imagined it with dread and fear. I want you to know that it can be beautiful and fulfilling and peaceful. Even joyous.

So many of you have, in great kindness, been asking if there’s anything you can do for me. I’ve expressed before how my consolation in death is the idea that more good might come with me dying than living another fifty years. I am so very grateful and comforted to have already heard about some good things that have come from my sharing about this process. But I had also ambitiously planned to work towards some profound social change and do an awful lot of good work in the next few decades. So there’s quite a bit of pressure on the rest of you! I know you will meet this challenge. You will use your compassion and intelligence and creative problem-solving and courage to make the world more just and safe and beautiful and healthy for all. I suppose it’s selfish, but I really need to know that the world will be filled with more goodness and love when I’m gone. That is what you can do for me.

In the next short while, I will also be posting about a special fund I am setting up. I hope, in addition to my appeals for more kindness and smiling and creativity and blood or organ donations, that you will consider generously donating to this cause as well as a few others my family is helping me develop. More on that soon!

On Gifts

When I first received this diagnosis, I also received a gift. (No, I will not offend anyone who is suffering directly or indirectly from cancer—or any other misfortune—to suggest that cancer itself is the gift. Cancer is just shitty luck, which any of us can get no matter what good or bad choices we’ve made in our lives. And I would so gladly give it back if I could!) The gift I received, virtually at the same moment as the diagnosis, was acceptance. (I’m calling it a gift because it was just suddenly there for me.) This gift has proved incredibly valuable. It has meant I have been freed from a range of difficult emotions and reactions one might expect with a terminal diagnosis. Most wonderfully, it has meant no anger, denial, desperation, or despair. I have also been most blessedly free of depression, fear, anxiety, and bitterness. This is why it is a gift. Instead of all that hard stuff, I’ve been left with plenty of space for gratitude, love, joy, wonder, peace, connection. This has meant I could continue to be mostly cheerful, still be delighted to greet each new day and cherish time with my loved ones.

I did, however, question the gift of acceptance for a few weeks while I was struggling to decide whether to pursue conventional medical treatment (chemo and radiation), alternative treatment, or simply do nothing and let the disease take its course. Though acceptance had felt so clear and solid in my heart, I questioned it as I was flooded with links to various treatments, promises of miracle cures, advice about attitudes, and stories of survival. (I know all that advice came from true caring, so I do appreciate it for that.) Though I did ask a few specific people for their perspective, I was soon overwhelmed, especially as much of the advice was directly opposed with other advice, and there were very few verifiable facts anywhere. There were only a few things I was sure of. I knew I didn’t want to waste my time and energy battling an unbeatable cancer. I also didn’t want to die. But I wasn’t afraid of death either. Nor did I want to give up if there was hope. But now I wondered whether it were true that if I were determined enough I could beat this, as many claim. I know medical knowledge is faulty at best and woefully thin for this particular disease, and statistics are deceptive. But what facts there are indicate that any hope to be cured or survive very long with this diagnosis really aren’t reasonable. And I have known several people who were determined to live but who did die nonetheless. The fact is, not one of us is ultimately going to beat death. Though many find it empowering to believe they have full agency over their health, I don’t believe we are responsible for all our diseases, or even for our baseline health. Sometimes things just go wrong and there’s nothing we can do about it. (More on that in another post soon.)

All this to say, I have reclaimed that gift of acceptance. Living in a way that is true to me means accepting and fully embracing this experience so that I can do my best to transform it into something positive. That is where my energy is focused. Not on hoping and trying to survive, but on turning this into something that brings more goodness and joy and love and peace into the world, rather than being just an experience of loss. I have received so many gifts of all kinds in my life – especially gifts of joy, love, and kindness – and what I most want now is to leave as many of those gifts with all of you as I can. That is what will bring me peace in death.

Recognizing and accepting such gifts is not always easy, especially for those without a formal religion or spiritual framework with which to construct meaning in an often senseless world. But I think the gifts are there. They’re not always the gifts we might have asked for, but being open to receiving them can help us through the parts of life that seem to be anything but a gift.

On Smiling

I got so sad the other day when I realized that being dead would mean never smiling at anyone ever again!

The first person I can remember commenting on my smile was Pierre Elliott Trudeau on a high school trip to Ottawa. Many people since have told me I have a nice smile, but because I never properly smiled at myself in the mirror and I was too self-conscious when being photographed to fully smile, I didn’t know what they were talking about. Then I started skyping with dear ones, and in that little live video screen of myself I saw the smile I gave with love. So that was the smile! (Now I make sure I am smiling at the person taking the photo, rather than worrying about the camera, so there are a few happy photos of me!)

My dad keeps expressing wonder that I am still smiling, despite this illness. In recent years, smiling for me has become a way of giving love not just to those close to me, but to strangers, students in the classroom, anyone I greet. I especially like smiling because it’s a socially acceptable, non-intrusive, immediate way of communicating feelings of love and good wishes—blessings, if we want to use spiritual terms. I don’t think people realize that this is what I am doing when I smile at them, but when someone smiles back, I know they have received something positive from me. It doesn’t cost me anything (except deeper smile lines on my face) and is so easy to do. For me, it’s a kind of joyous spiritual practice. All it takes is the desire to give something good (kindness, understanding, a sense of connection or fun, encouragement) to another. And having that desire to give feels wonderful!

So while I’m sad that I won’t be able to give in this way when I’m gone, I also realized that all of you could give those smiles for me. I can’t tell you how much better that makes me feel! Imagining all of you smiling at each other, giving love, creating more goodness in the world, more than I could ever give or create on my own, that is a true solace for me.

So please, smile for me. Smile at strangers in the street, the clerk in the store, your friends and family. Smile at someone you don’t like. Smile especially at those who look like they need a little love. You can even start now! I will be so grateful!

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April 15 Photo by Roy Cross

Steve Marier, RIP

Today I would like to share one of the last thoughts of Steve Marier (taken from the full post on his facebook page), a Sutton friend who inspired so many with his joyous embrace of life, astounding courage, and positive attitude despite years of exhausting physical suffering:

Je vie présentement des moments magiques où il n’y a que contemplation face à la vie. Un sentiment de légèreté et de liberté inégalable qui me libère à tous les niveaux de mon être. Après tout ces années, je serai bientôt libre et détaché de mon enveloppe corporelle. J’attends mon passage dans l’autre dimension avec enthousiasme et joie. Je ressens la mort comme une étape, un rite de passage qui fait partie intégrante de la vie humaine. Aujourd’hui, je sens autant la présence de la vie en moi que celle de la mort. Les deux états sont présents pour me rappeler l’équilibre fondamental qui gouverne notre univers. Quiconque vie avec la peur de sa propre mortalité n’a jamais vraiment expérimenté la vraie sensation de se sentir vivant.

May his beautiful soul fly free.

The New Do!

This is my transitional haircut. My hair was very long and had been pretty much since my early twenties. I thought it would be easier to have it all fall out if were shorter to begin with. Since I rarely got my hair cut, I didn’t have a stylist, but a facebook call for recommendations led me to David Landry at Salon Bon Vivant. He made it fun, and I actually like the new look–completed by the red lipstick he insisted I wear with it! Now I’m only sorry it will all be gone in a week or so! Happily, I was also able to donate all the hair he cut off. (If you look closely, you can see my gray hairs!)

The New Do!

Photo by Roy Cross

On Hope

Miriam, one of my oldest and dearest friends, is a philosopher. These days she’s been writing about hope, so we’ve had a few talks about the difference between hope and optimism. From the beginning of this illness, I have said that while I was positive, I wasn’t optimistic. Optimism is a tricky thing. And so is hope. Many messages I’ve received have encouraged me not to give up hope. While the intentions here are obviously good, I haven’t quite known what to do with this advice. Though I’m a generally optimistic person, since I first became unwell a few months ago, I have felt that this illness was not going to be curable. So I never really had hope. But that doesn’t mean I’ve felt despair. For me, the opposite of hope has been acceptance. And that has been very positive—nothing like despair, which is, as Miriam would tell you, the truer opposite of hope. So while I don’t have hope that I will get better, I am okay with that. What I do hope is that everyone around me will also be okay, that we will all find the strength and courage and love we need to get us through this, that those of us who need to be comforted and healed will be, that we will experience deep connection with each other, with nature, with the entire universe. That we will not lose sight of love as our guiding light. But even here, rather than hope, I have faith.

On Being Good and Being Grumpy

I’ve kind of felt like I’m attending my own funeral these past weeks, what with everyone publicly saying such nice things about me. You must be worried I’ll get a swelled head! To those who don’t really know me, please be assured that I am not nearly as virtuous as one might gather from all the comments here (which I “like” so you know I’ve seen them, not because I agree!). Only those closest to me (these days mostly just the incredibly patient and tolerant Roy) have been witness to my other side, which is impatient, short-tempered, and –worst of all– critical. It seems unbelievable even to me that I could be critical of someone doing their utmost to be loving and caring, but alas, it is so. (I’m also frequently just annoying.) These are character traits that I have struggled against for decades and had, I believed in recent years, made some progress against. But being ‘good’ is easy when everything is going well. Now that bad side is asserting itself again. (Yes, to be human is to be flawed, and I’ll be so until that last breath!)

So I am reminded that when others are less than their best eulogy selves, it is usually because they are struggling in some way. We may not see it, or it might be something so deeply buried in their past even they don’t see it, but generally, few of us choose to be grumpy or unpleasant when we are able to choose to be cheerful and kind. Though we of course all still have to take responsibility for how we behave (reasons are not excuses!), we could also use understanding and compassion for the struggles behind our bad behaviour (like a child’s tantrum, which in my experience is always because of an unmet need that the child cannot even identify, let alone express). I think maybe we could even just assume that if someone (sociopaths aside) is not being very nice (like last week’s chemo nurse!), they in fact need extra kindness themself (I am horrified by my own grammar here, but I’m trying to embrace the singular, gender-neutral ‘they/them’—and this is what happens!). That is, even those who are not kind need kindness.

(This post is not meant to solicit assurances that I am allowed to be grumpy while sick –Roy keeps telling me that– nor to get extra kindness or praise for myself. It’s really just to encourage kindness and understanding, which seems to be emerging as my end-of-life mission. So please send any generous words to another—like the truly sweet and giving Roy, who needs the kindness to counteract my grumpiness!)

A Little Bit on Kindness

I’ve been thinking a lot about kindness lately, having received so much of it in the past several weeks. I’ve been struck with how deeply kindness can connect us with each other, how it is caring and compassion in action. It makes suffering bearable. I never realized before how much kindness matters, even in the smallest gestures. A smile, a thank you. Taking a moment to listen. Maybe it’s all that matters. Many of us find it difficult to receive kindness, but doing so is itself a kindness, since it allows others to experience the goodness of being kind. I haven’t had time to read more than the review, but this book looks like a worthwhile exploration of our complicated relationship with kindness: Book Review | ‘On Kindness,’ by Adam Phillips and Barbara Taylor


On Luxury in Illness

The word that keeps coming to my mind is luxury. It is a strange word to apply to illness, but somehow, the two words keep linking in my mind. Can I say I am having a luxurious illness? Not really. But the circumstances around my illness are those of relative luxury. I keep thinking of how different my experience could be, of how many people are suffering similar challenges without the benefits and blessings that mean this illness is really the only problem in my life. I receive sick leave benefits from my job and have no financial stress. I am being well cared for by loving family who are anxious to give me whatever I might want. My lover is near me with tender attention. I am not worried about my children, who are so solidly on track to being independent, fulfilled, responsible young men. They have beautiful souls. I am surrounded with beauty. My bed is a haven of comfort. I am safe.

People keep asking how I am managing so well. But I am acutely aware of how privileged I am in being able to approach this new part of my life in this way. I am sure that in no small measure these gifts make the difference. I can’t help counting my blessings, even as –or perhaps especially as– I face losing them all. Though I was already living in daily gratitude for all these gifts, they are all the more precious and appreciated now.

I wish the world were more equitable, that nobody had to suffer in illness and face death alone and uncared for, in poverty, or worried about the well-being of those they were leaving behind. People have said to me that it’s not fair that I am ill. But it is also not fair that I have had such a privileged and beautiful life. I never expected life to be fair, but I have always wanted it to be and worked towards making it more equitable. While the world we live in will never be perfectly so, it is within the power of each of us to do something to make things better for others in need. It just takes a little extra generosity, a little extra kindness. A question we can all ask of ourselves: is there anything I can do for someone else?

Nathan

This silly picture of Nathan and me showed up as a ‘memory’ on facebook. It’s from three years ago when he was six months into his treatment for addiction at Venture in Barrie, Ontario and we had a weekend visit. We were wandering around town and happened into an event where photographer Jennifer Klementti was snapping these staged shots. Perhaps now the picture could be seen as an allegory for my treatment!

What a strong kid Nathan was to get through all that at just sixteen!! Knowing he could come out of nine months of challenging treatment with such a solid sense of who he is and how he wanted to live, and then maintain complete sobriety through three years of college (he graduates in just a few weeks!), gives me great confidence that he will be strong enough to get through losing his mom and any other challenge life might throw at him in the years to come. You can’t imagine how proud I am of him! You can follow his incredibly impressive circus accomplishments at Nathan Briscoe or Max & Briscoe.

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Sharing my News

My dear friends,

(This was first posted on facebook.)

I have been uncertain about whether a facebook post is appropriate for this news. Though many of you already know about this, there are so many others who mean something to me but whom I may not have time to reach out to individually. So this simply seemed expedient. Also, I have always believed that it’s important to speak openly about the really hard parts of life – that doing so in fact makes them a little easier for everybody. And the context will be necessary for some of the other things I may want to post in the coming days.

I have been diagnosed with an aggressive terminal cancer, stage four uterine leiomyosarcoma. It is not curable and doesn’t respond much to treatment. (The chemo I’ve been prescribed only works for 55% of patients, and only temporarily; I haven’t yet decided whether to do it.) So I have no idea how much longer I have—it could be weeks (this cancer works fast!) or months or even a year or more if treatment is effective. Not having a time frame makes it hard to plan anything, but it sure is a good lesson in taking each day as a gift! (And yes, I have heard those stories of diagnoses that people outlast by decades!)

I especially want those who are concerned about me to know that I am at peace. This is not the kind of cancer that one hopes to beat. I have found, in fact, that simple acceptance is easiest. Acceptance has also allowed me to share incredibly special moments with my loved ones. Truly, I have never experienced anything as beautiful as these past three weeks. I am filled with gratitude for how blessed I have been for fifty years, how blessed I am now. And while I also have moments of sadness and grief, I continue to awaken most mornings in wonder and joy at this world. I am so excited about spring!

I have been so touched by all the kind notes and generous offers of help I have already received. Though I’m not quite comfortable with a lot of attention (another reason I have hesitated to post this), I appreciate every gesture, prayer, and positive thought. Since I am most fortunate to be extremely well cared for by family members who live close by, most of my wants and needs are being met. But if I do need anything in particular, I may post it here. And I will probably be posting some special requests, since I will be leaving much undone that I hope others will take on.

Please don’t forget my dear ones, who also need your good thoughts and care. This is hard for them. Though we’ve always been an independent lot, we are learning to accept kindness and help.

Love to all of you.