Ask Me Anything #4: Interactions

(This “ask me anything” answer is in response to a class of young college students’ questions.)

Did people distance themselves from you? Do people treat you differently?

I’m not sure. Nobody close to me stayed away, in any case. There are some people who I know care about me and were upset to find out I was terminally ill but didn’t know how to talk to me. Some of them took a long time before reaching out. Some still haven’t and probably won’t. That’s okay, though I would still like them to.

I know many visitors have been nervous because they weren’t sure how I would be, both emotionally and physically. In fact that’s really why I started my blog, to let people know I was okay. Maybe some people are nervous about their own emotional reactions, afraid they might cry or say the wrong thing. My mom told me just the other day that she doesn’t stay very long when she visits because she starts to feel like she’s about to cry and doesn’t want to cry in front of me. I completely understand crying—I do it myself all the time. I also say the wrong thing far more often than I would wish! So I’m very forgiving about what people say. And I always have a box of kleenex handy.

It’s important to remember that nothing bad will happen from reaching out to someone going through something like this. It’s better to take that risk. We’re much more likely to regret not reaching out.

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Roy’s Blog: The Wind Took It

A sweet piece by my guy. The wind took it.

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Ask Me Anything #3: Assisted Dying

(This “ask me anything” answer is in response to a class of young college students’ questions.)

Would you consider assisted dying?

Yes, I would. It is not my plan, however. I hope to die naturally, with pain control and other measures for comfort, but nothing that will prolong my life. I also hope to remain conscious, though often people are not near the end. It is possible that the tumours cause distressing symptoms, depending on where they develop. In that case it is possible to be put into a coma or state of unconsciousness until death occurs naturally. If I have unbearable pain, I could request an assisted death. This is unlikely, though, with available pain medications.

Another option, which I think I prefer, is simply to choose to stop taking nourishment, which should lead to death in about five days or so. That way no one is responsible for ending my life, and I don’t have to make that terrible decision of a particular moment to die. I think that would be the easiest for my loved ones too.

It is hard to know how we will all feel until the moment comes, however. Death is a lot like birth; we can plan for it, but as there is no knowing how things will go, it is best to be prepared with options. I am very fortunate that where I live assisted dying is available.

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Ask Me Anything #2: Preparing

(This “ask me anything” answer is in response to a class of young college students’ questions.)

How are you preparing yourself?

At first I had to “put my affairs in order,” which means writing or updating a will (which should have been done way before this!), making sure my kids would be taken care of should they need help, appointing someone to make decisions for me in case of incapacity (if I become unconscious or of unsound mind), and generally making sure things like bills will be paid while I’m sick and my things given away. All that is actually a lot of work, so it’s good to always be prepared—death can strike at any time!

I also wanted to spend time with all the people who are important to me and make sure that they all know how much I love and appreciate them. It’s also important to me that they have the opportunity to say what they need to say to me and aren’t left with any regrets or unresolved issues that concern me.

I have been lucky to still have more time once those things were taken care of. So since then I have been reading and thinking and writing about this process of dying, trying to make sure I understand it as fully as possible and am ready and completely at peace. More recently an important part of that has been daily meditation, an hour long. Besides that, my preparation involves giving as much as I can and writing for whoever might value what I have to share. I also try to simply enjoy life in the moment!

Does not knowing when you are going to die make it harder or easier?

I know I’m going to die pretty soon, but I have no idea when exactly. It’s kind of the same as for everyone, only on a very short timeline. It does make planning hard, which is a frustration not just for me but for those close to me as well, especially when they want to make travel plans. I don’t know if I have time for just a few urgent or shorter things or for bigger projects, like writing a book.

Lately I’ve been feeling increasingly well, so it feels like dying is getting further away rather than closer as expected. That’s confusing in a new weird way. The better I feel the more I want to make plans for the future, so I have to keep reminding myself I don’t have much future and not less myself fantasize about living another fifty years!

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Ask Me Anything #1! Initial Reactions

Kelly McKinney, a teacher at John Abbott College in Montreal, recently asked me if I would participate in her Humanities course called Views on Death and Dying. We went with an “ask me anything” format, so the students sent me their questions. I thought it would be fun to have an “ask me anything” feature on the blog, so I’ll start by posting one of the class’s most common questions with my answer, with others to follow. Then I’ll invite you to ask your own questions!

My son Oliver also bravely –and beautifully– participated in this. You’ll find his answers to their questions for him in this post: Oliver’s answers.

Below is my first one, in shorter form. If you prefer a more detailed account of that day, read this one: March 8, Surgery Date, International Women’s Day.

What was your reaction when first you found out you were going to die soon?

I was told just moments before being put under general anesthesia for surgery, so I didn’t have much time to process. Right away I thought that there must be some purpose to this, some special mission for me in the afterlife. Now I think maybe that purpose was this end-of-life work. I was also immediately very sad that I would be leaving everybody and everything I love so much, so I cried. At the same time I felt full of gratitude for the wonderful, joyous life I had had.

I hadn’t met my surgeon until that moment. She was eight months pregnant and glowing with health, sparkling with energy. I was so pleased that she was my surgeon. I remember thinking how fitting it was that I was to have my life-giving uterus removed by this pregnant surgeon on this particular day—it was March 8, International Women’s Day. That I was so sick and dying while she was so vibrant and bringing forth new life seemed to my poet’s mind a demonstration of the world’s beautiful and relentless balancing of life and death.

I was also worried about my family and how painful this would be for them. That was my first and pressing thought when I regained consciousness: I was so anxious to get back to my family to tell them I was okay even though I was dying, and that they would be okay too. I was terribly impatient in the post-op recovery room, where there was only one overworked nurse and so much to do –I was hooked up to so many things– before I could be brought back to my room where I knew my family had been waiting and worrying for hours.

Though I’ve been fortunate to have much more time since then, the mixture of gratitude and sadness, the sense of purpose, are still my primary feelings. I might add that immediately accepting my diagnosis also helped my family to accept it. And my being okay with it has helped to lessen their grief too, I think, so I’m not so worried about them anymore.

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October Update

I haven’t written here in a while, mostly because we had a long bout of fantastically sunny, summery weather, making it impossible to sit in front of my laptop, and then I had a wonderful week in the Baltic visiting my son on the ship he’s performing on. I wish I had better photos, but I left my photographer behind!

Nathan and me on Silja Symphony

Nathan with me on the Silja Symphony somewhere between Stockholm and Helsinki. One of the two photos taken on this trip.

I quite expected my disease to be far more advanced by this time. In fact, I thought it likely I’d be dead. But instead I’ve been feeling much better since most of the chemo effects have worn off. I’m strangely healthy for a terminally ill person! Though full of uncomfortable tumours in my abdomen, my symptoms are miraculously minor so far. With effective pain medication, I am still happily active, joyfully greeting each new day. Of course, there are darker days now and then. And sometimes moments of listlessness or vague unrest. Truly though, real suffering is rare and celebration the rule. I am enormously appreciative of this time.

But being energetic again has me focused more on living than dying. So I’m often out wandering in search of overlooked beauty, or tinkering with other creative projects. So this blog has been neglected. It’s hard to remind myself that this time will be short when I still have so much vitality. How natural it is to plan for the future! And to procrastinate!

I do believe that all the positive thoughts, energy, and prayers I have been receiving from so many of you are a big part of why I am relatively well right now and able to enjoy the magnificent gift of these days. I feel so privileged and blessed to be the recipient of all this goodness and love, and I wish I could properly thank all who are sending it. Please know I am so grateful!

(Just for fun, here’s a video of Nathan practising his act with his porter Max on the ship. Luckily I didn’t witness this sort of slip while I was watching in person.)

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Roy’s Blog: The eye of the storm

Roy wrote this post that perfectly expresses the strange in-between state we are in with this cancer thing. I was going to write about this time of relative wellness, but he has done it for me with just the right metaphor: The Eye.

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Please share your vision of an afterlife!

I have been enjoying quite blissful imaginings of possible afterlifes lately, and so I thought of inviting you all to share your own personally preferred idea of a positive post-death experience. I know many of you don’t believe there is anything at all after death, and others believe in a received religious concept of heaven or reincarnation, all of which is fine and possibly beautiful; rather than those, however, what I would like to hear about is your own imagined vision, if you have one.


For instance, a friend recently wrote on my blog his image of death as “closing my eyes into a lover’s embrace, the lover being, in that instance, also the Great Mother.” I thought that was lovely (even though it sounds somewhat incestuous!), and I’d like to hear more, regardless of how much you believe in them or how religiously correct they are. So please share!

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Larkin on the Fear of Death

I have been thinking for a while about the fear of death. Many people mention to me how terrified they are of death, and I know this is common. Some college students recently asked me about dying, and questions about what I was most scared of were at the forefront.

But I don’t share this fear myself, and I couldn’t quite grasp the substance of it. Then Carmine Starnino brought this poem by Philip Larkin to my attention. It articulates that fear so sharply, so painfully. (Warning: this poem is very bleak!)


More accurately than fear, what I think this poem articulates is a dread of death. This I can understand, even though I don’t feel it. To so intensely not want to be deprived, all at once, of every single thing we cherish, including our very selves, but be powerless to avoid it–this is to dread death.

If you think this poem doesn’t quite express your own fear of death, I would love to hear from you!

For the record, I know it is possible to get past that dread to make peace with death, and that doing so is very much worthwhile. It allows us to ponder our mortality in a much more constructive way that can help us not only face death with serenity, but also set ourselves on our best path through life. If we always turn from death in dread or get stuck in fear, we never learn its invaluable lessons. More on that in another post soon!
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On Grief, the Shadow of Joy

I noticed this morning that I had labeled the front of my journal Summer 2016. I don’t write very regularly, so the notebook still isn’t filled, even at the end of Summer 2017. Curious about what I was thinking last year before I was sick, I reread the first page of the journal. I was surprised that the theme back then was grief, so I thought I would share it here. (For context, my younger son, who had emerged whole and healthy from years of addiction, was shortly to move out into an apartment with schoolmates when I wrote this. He was still only 18. My older son had moved out four years prior.)

Thursday, June 23, 2016

I’ll do this notebook a little differently, perhaps. Maybe more like a journal, a little freer in structure. I have been very rigid with the notebooks. Perhaps I should have gotten one with an unlined side. Oh well. This summer is for creative pursuits now. Some research and stuff too, but only one more meeting. I am in fact ambivalent about even writing here—I’ve been so immersed in just feeling, in observing, in connecting for the past week. Unfortunately that has meant an awful lot of grief. I’ve been feeling not just my own grief at this huge transition in my life, but all the grief of my past, my future, and of everyone else’s. The grief of the whole world. It’s all the same grief, this pain at loss, and it’s so very close to joy, to the exquisite, tender, fragile bliss at life and its terrible beauty—I guess because that beauty is so fragile we know the grief is following it fast, it’s just there in its shadow. And the greater the beauty the more vulnerable it seems, the more acute the pain. I looked at Nathan yesterday morning sitting across from me at the breakfast table, and he was so very beautiful in the full bloom of his health and youth—clear skin, rosy cheeks, clear eyes, red lips. He was grumpy and taciturn, but so beautiful it brought tears to my eyes. One of my last breakfasts with him, the last of my days with him living with me, the last of my days of regular, daily motherhood. My heart aches with this big change.

I was struck at how intense my grief was then, and how closely connected to joy. The shadow of joy. Every major change brings the potential for grief at the loss of what was, so we have opportunities for grief all through life, not just at its end.

Last week my sister Lorraine came to me, having just said goodbye to her dear youngest daughter moving far across the continent. I know how she must have gazed on her daughter’s sweet face alight with that bright, pretty smile and the excitement of adventure. And how her heart must have ached with grief.

2010-03-11 06.22.52

Just the week before my son had gone still farther away, leaving for months across the ocean. This time I wasn’t sure I would ever see him again. That grief was the hardest yet. But then I remembered to think of him as a gift. For that is what we must do as mothers: we must grow our children and give them to the world. So that is one of my gifts, my beautiful, sunny boy who has gone off to share his gift of making others marvel and delight at what we thought was impossible, making our imaginations a little wider, a little wilder.

To live is to dance in and out of the shadow of joy.

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Roy’s Blog: What to say and not to say

My boyfriend has written a super helpful (and funny!) post about how to respond to someone sharing their bad news about a loved one’s diagnosis on his blog, And sometimes it goes the other way.

This is a companion piece to my earlier post on what to say when someone has terminal cancer.

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On Hoping for Miracles

My palliative nurse keeps telling me that sometimes chemo patients’ hair grows in completely differently—for instance, curly instead of straight. I don’t know how she might have guessed that I have always coveted curls. Maybe from a glance at my boyfriend’s strikingly abundant curls and ringlets. It’s true, I have always wanted curls. And it’s true, my boyfriend’s adorably curly head is probably at least a small part of why I like him. My hair, while I still had it, was so strictly straight it couldn’t even hold the curl from a curling iron. So I have kind of been hoping for the minor miracle of curls.

My palliative nurse also insists that sometimes terminal patients live far longer than predicted. That sometimes they don’t die at all. (At least, not as they are expected to, I feel compelled to add.) She also says that I’m not dying anytime soon, which I rather like to hear. I don’t ask her to get too specific about her idea of soon, but when somebody else asks, it sounds like, well at least not this month!

In the past few weeks my hair has started growing back. It’s been coming in as soft and downy as a newly hatched chick, or dandelion fluffs just before they break free from the flower head and float away. I can hardly stop running my hands over my head, it’s so fleecy soft. But even at just a few millimetres, there’s no mistaking the straightness. I have no original similes for this. It’s as straight as a pin. But soft as a baby.

Susan and Horse 1 from QT

At the county fair. The horse’s nose is softer than my head. (Photo by Roy Cross.)


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Guest Post by Oliver

My son Oliver and I recently accepted an invitation to answer some “ask me anything” questions from a class of college students in a course called Death and Dying. Here are Oliver’s answers to the questions they had for him about his mom being near death.
What were my initial thoughts when I found out?
I thought about the kind of life she had lived up until that point – a life of striving to be kind, to be at one with nature, to be good to her body. It felt like a particularly shitty kind of irony that she would get such a ruthless disease.
Then I thought about all of the things that she would miss – my graduation, becoming a grandmother, mine and my brother’s creative, intellectual, and career accomplishments, guiding us through all of the stages of adulthood, being cared for and surrounded by love and family and nature in her old age. It was the single greatest moment of loss that I have ever felt, and I expect that they are the things that will make me miss her most.
I thought about all of the things that I wanted to do as soon as she was out of the hospital, all of the things that felt most important.
There was a lot of crying all around, and laughter, too.
How long did it take me to accept it?
This one might sound a bit weird and is where the story probably starts to diverge from what people are used to when they think/hear about dying people and their loved ones.
I think that once I had wrapped my head around her medical situation, acceptance seemed like the only path, so that’s the path that I walked. It’s hard to say whether that took minutes or hours, the order of things can get a bit scrambled.
Accepting it didn’t mean that I was done feeling sad, that I didn’t need to be close to her and my brother and the rest of our family, that I wasn’t still shaken by all of it. Accepting it simply meant accepting that there was no way she was going to live much longer, whether that meant weeks or months (at the time it felt like it might really just be weeks). I think that this was an important step because it informed my thoughts and my behavior from that point on – I wasn’t going to live in denial, or with some foolish optimism that things would just be ok. My mom was dying and I was going to make sure we got the most out of the time we had left.
How has my life changed?
I could answer this in two ways.

On the surface, my life isn’t terribly different, at least not yet. I finished my semester at school, I worked all summer, and I’m about to be back in school again for the fall. I see my mom and her family more than I used to, up from maybe once a week to two or three times a week, and sometimes for a day or two at a time instead of a couple of hours.

On a more philosophical level, I’ve had just about the most in-your-face reminder that a person can get that there are no guarantees in life. We all know that we could fall terminally ill or be mortally injured at any time, but it’s not useful to live in fear of that, so it seems like most of us don’t think about it too much, preferring instead to live life with the assumption that it will be long and fulfilling.

I don’t live in fear of death, but I do live with a renewed respect for it, or at least I’m trying. What does that mean, practically? It means that I try to be more deliberate in my decision making, especially when it comes to deciding how I’ll be spending my time. Whether it’s dinner plans or a year-long job contract, I try to give the decision the time it deserves so that I can make sure that my choice is one that will lead to fulfillment and enrichment. Knowing in my heart that I’m doing things that matter to me, right now, allows me to be comfortable with the knowledge that death may not be far off.
How did this change my relationship with my mom?

We’ve always had a strong mother-son relationship. In the years since I moved out (a little over 5 years ago), she’s also become one of my closest friends, so I don’t know if I can say that it’s made us any more or less close.

I obviously feel an urgency to spend time with her and our family, to have as many of the important conversations that we hadn’t already had, to revisit some of the things that have stood out as positive moments in our lives together. That reflection has probably given me the opportunity to feel some more pointed gratitude towards the many amazing things that she’s done for me in the years since my birth, or my conception, even.

bus - color corrected

Oliver and Susan last June in a San Francisco streetcar.

Do I have any regrets about my relationship with my mother?

Absolutely, though it’s hard to think of many specifics.We’ve had almost 25 years together and as much as people tell me how wonderful I was as a kid and how painless I was as a teenager, I know that I was far from perfect. Quietly stealing away from the house with my little brother when we were very young. Driving her to frustration and nagging by putting off chores or other responsibilities (she hated nagging/yelling – who wouldn’t?). Moments of blind anger or frustration as a teen. Some lapses of judgment that ended up bringing her (and my father) true parental distress.

I know I’ve probably expressed regret/apologized for all of those numerous times, but just for good measure – I’m sorry, mom.
How has all of this changed how I think about life and death?
To my mother’s dismay at the time, death was something that preoccupied me for what feels like the better part of my childhood (that kind of remembering can be deceptive, but I trust it here, I think). That preoccupation took a back seat to more pressing concerns as I started to grow into prepubescence, but I don’t think the reality of death was ever far away and remained a source of angst and distress if it lingered too long. Death (my own or a loved one’s) was probably my greatest fear.Now? As trying as this has been and continues to be for me and for all of us, the rest of my life hasn’t fallen apart. I think that for the first time, death, whether it be my own or someone else’s, feels like something that I can handle.
What’s my advice for other young people going through something like this?
Try and be honest with yourself, and with the people around you, if you can. Be honest about what you fear, your grief, your confusion, your happiness. Whatever it is you’re going through on the inside, this is the last chance you’ll have to share that with whoever it is you’re losing, and the last chance you’ll have to hear what they’re going through, too.
How do I cope with day-to-day struggles?
In pretty much the same way I always have. I think that I may be reading more books, watching more Netflix, and playing more games. Maybe that’s a bit of escapism? Processing all of this can be exhausting. I think it’s ok to need a bit of time where you can focus on other things, especially in a non-work capacity.
Is it hard to see my mother in pain?
Of course. This is the person who raised me and cared for me whenever I was sick or hurt. It’s hard not to feel frustrated that I can’t do much for hers, but I’m lucky in that, for the most part, her medications keep her comfortable.
What was my initial reaction to “the death project”?

She had hit such a stride professionally in recent years, it was nice to know that she had found an outlet for her creativity and insight, for all of the brilliant thinking she’d been taking the time to do about life and death.It’s also been nice because I haven’t had to explain to everyone what her situation is, or how we’re all dealing with it. I think that her being so open makes it easier for people to know where we’re at and how to interact with us, which is great because I’ve heard a lot of stories now about people feeling deserted in times of tragedy because people aren’t sure what to say. That would be hard. 

How do I think it has changed this process for myself and those around me?

I think that it helps to have it all out there. It doesn’t leave much room for denial or false hope, and it’s a comfort knowing that anyone who’s heard about her condition has probably read some or all of the blog.

See my answer to the previous question for more on this.
Are there challenges that I face now that I didn’t before?
I don’t think so. Not outside of the obvious emotional ones, at least.
What are my beliefs about what happens to us when we die?
I’ve spent a lot of time talking to my mom about this, so I could write a lot here. I’ll try to keep it reasonable.
I don’t believe in any kind of afterlife, religious or otherwise. I don’t believe that our consciousness can survive outside of our brains, and I know that our brains don’t do much without oxygen and electricity and all the rest. I don’t believe in reincarnation. I don’t believe in a “soul” in the traditional sense.

My understanding of those things is that they are necessary for a lot of us because without them, it’s very hard to answer questions like “why am I here?”, “why does anything matter?”, “where did I come from?” – the real existential kickers.

I’ve come to my own conclusions here, and they essentially come down to embracing as fully as possible the reality that the moment our consciousness begins is the product of all that happened in the universe up until that point and that over the course of our lifetimes, every day, every second, every moment, we are doing things that are affecting the course that the universe will take, however slightly. In that way what we do in this life lives on long after our conscious time has come to an end and the molecules in our bodies have drifted far apart.

What are my expectations for when she eventually dies?
All I really expect for certain is that it will be unexpected. It will be my first and only time losing a mother, though, so I can make a pretty safe guess and say that it will bring a lot of feelings, that it may be difficult to focus on anything else for a time, and that I and so many others will have lost something that can never be replaced.
How have I prepared myself for that eventuality?
By doing my best to ensure that I don’t give myself anything to regret in the meantime. What that means exactly is probably best explained by some of the other answers here.
Can we really be prepared for something like that? 
I don’t think so.
How do I imagine I will relate to her once she’s dead? 

I won’t be relating to her, unfortunately. That’s hard to think about.

I will, however, be relating to all of the love that she has given me, all of the wisdom I’ve tried to learn from her, all of the memories I will have of her, to the people and places and things that will always remind me of her.

What is the last thing I would like to do with my mom before she dies?
Be close to her.
Other thoughts and feelings.
I love you, mom.
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Book Recommendation


The Bright Hour is a radiant book. Nina Riggs brings her fine sensibility and craft as a poet to her heart-wrenching yet funny memoir about facing death as a young wife and the mother of two little boys. Structuring her book around anecdotes that are, more often than not, full of irony and joy in the everyday chaos of family life, she selects only the details that illuminate, bringing the reader closer to that bright hour of clarity about what really matters in life.

Cancer is endemic in Nina’s world. Her family history is full of it. In the short time of her own illness, Nina’s mother also dies from cancer, and a close friend confronts the exact same diagnosis as Nina.

But Riggs’ world is also full of poetry and philosophy. Without any intellectual pretension, she looks to Montaigne for inspiration and searches her heritage as Ralph Waldo Emerson’s great-great-great granddaughter for meaning, taking her perfect title from one of his works.


Author Nina Riggs

The last chapters are from just this past January, so this book feels especially immediate with its political and cultural references. I’d say it’s even more powerful and personal than Paul Kalanithi’s beautiful bestseller, When Breath Becomes Air (another perfect title). If you’re looking for excellent books on death and dying, don’t miss Being Mortal by Atul Gawande either.

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Guest Post by Miriam

Miriam’s friendship is a rare and special thing, as you will see here in her guest post, Susan Time. I am very blessed.

Jackie, Miriam, and Susan, 1991, from Miriam’s wedding.
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On Giving Gifts

I have written here before about receiving gifts, and of the sweetness of gratitude. I do believe that gratitude is one of the cornerstones of happiness. But lately I’ve been thinking even more of giving gifts, of what I want to leave for others when I go.

My own death is one of those gifts. Not that my loved ones want it. I know my parents in particular are anguished by my going and would do anything they could to stop it from happening. But it is my great hope to somehow turn the inevitability of my death into something of deep value for them.

The other day I watched a film about Stephen Jenkinson, a sort of renegade grief and death specialist. In it he spoke to a dying woman about my age with two children about the age of my own. She was at peace with her death but still concerned about how her family would manage without her. Jenkinson presented the metaphor of a dinner: she would not be at the dinner herself, but she was setting the table for it in how she died. I liked that idea. Though I know they’re going to manage just fine without me, I do feel like I am ‘setting the table’ for my family as I prepare for my own death. I have the opportunity with this bit of hard-won time to help them prepare for my death and, by example, for their own deaths in the future. I like the idea that my death can be a gift I leave for them that may, despite the pain of grief, be something deeply meaningful for them. Something that will ultimately enrich their lives.

This writing is also part of that gift. I hadn’t written for the past month or so, as it seemed I needed some time to just relax and enjoy the summer and time with my loved ones, but also, I realize now, to gather more thoughts, to read others on death, to contemplate and hopefully deepen my understanding of death and life—to prepare these gifts. I want these gifts to be something that others will cherish and bring to their own deaths and any others on the way. But I especially want them to be something that helps them hold life even more dear than they already do, as it has become increasingly clear to me that it is death that makes life meaningful, that without coming to terms with death, our lives are in danger of being thin, shallow, or sadly misdirected.

Flying Boy

My son Nathan sharing his gift of flying.

Thinking of my death and writing as gifts has me thinking about giving gifts more generally. People often ask me if I have any regrets as I face death. I don’t have too many, but one important one is that I didn’t give all the gifts I had to give. We often talk of people as having gifts synonymously with having talents. One of my talents is writing. But I didn’t write all the books that I wanted to. I regret that now, because I see that those books were gifts I was meant to give.

Our talents or gifts don’t do much good if we let them languish. We are meant to develop them as fully as possible and then offer their fruits back to the world. Whether your gift is caregiving, teaching, an art, craft, trade, or profession, part of the responsibility of having a gift is to develop it through hard work, playful exploration, the guidance of mentors, and through the lessons of failure. We probably also all have other gifts meant just for fun, as hobbies or recreation. Those with excessive self-doubt can benefit by not taking those too seriously!

The books and articles and stories and poems I didn’t write should have been written. I didn’t write them because I let fear of rejection and criticism and failure stop me. I let myself be discouraged by the many voices saying it was too hard to get published, that there were already too many writers all writing the same thing that nobody wanted to read. That success as a writer was close to impossible. I see now that I was wrong to believe this. The things I wanted to write and was capable of writing would have been appreciated by someone somewhere. They didn’t need to be bestsellers; it would have been enough that even a few people find something worthwhile in my words.

(One of the books I had planned and written in part was to be called Beyond Survival. It was conceived as an inspirational guide to not just surviving as a single parent, but thriving. It was to include interviews with other solo parents who had overcome all sorts of personal and parenting challenges. I regret not completing that book and offering it as my gift to all the other parents who struggle on their own as I did. More recently I was working on a feature article and potential book about youth addiction and its impossible challenges for parents. This is an important issue, another thing we don’t talk about in society but so need to as countless young people are being lost because we have no effective treatment programs for youth, who don’t respond well to treatment approaches designed for adults. Having lived through this as a parent, one of very few blessed with a positive outcome (as the photos here of my son Nathan attest), I very much wanted to write about this as my thank-you gift for getting my son back from the clutches of addiction. But again, I allowed myself to be discouraged by one rejection. Many years ago when my other son was just a little boy suffering from anxiety, I had also drafted a children’s novel (funnily enough, about a boy whose mother is dying). I let myself be discouraged from completing that book too. These are my regrets, because they are gifts I was meant to give but didn’t.

I did at least publish one book of poetry, so I have something to be proud of! I also did lots of other writing and work that made use of my gifts, so my regrets are not huge. But if I was miraculously given more time in this life, I would leave the self-doubt aside and devote myself to those unfinished projects.)

Circus boy

Nathan (at the top) sharing his gift in hand-to-hand.

I am writing about this now because someone asked me the other day if I had any words of advice for others. (It’s curious that we assume that the dying are closer to wisdom!) I guess one of my messages is this: give your gifts. This is what makes life meaningful. I believe that, without necessarily realizing it, we are happiest when we are giving. So don’t ignore your own gifts; develop them, devote yourself to them, if possible make them the focus of your working life, so that you can then give back to the world. If you have the privilege of choosing a career, choose the path that allows you to offer your gifts as a contribution to society. It’s really not about what you get in return. Then when you’re on your deathbed, you will be satisfied to see that you have given all you had to give.

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On More Time

(Please note this post was written last August. Sometimes I write things and don’t get around to publishing them. Some of the information here is related to that time only.)

Time is a strange thing, and our relationship with it is so often troubled. We all know it is limited for us as living beings on this earth, but most of us don’t quite know how to use that knowledge to make our lives meaningful.

When I received my terminal diagnosis last March (an advanced stage IV sarcoma), one of my concerns, of course, was how much time I had left. However, I didn’t ask about my prognosis, and my doctors didn’t offer much concrete information. I knew from my prior research that the survival rate for this type of sarcoma at this stage is very poor. And I knew from my own observation and experience that my tumours had grown very fast, it seemed a couple of centimetres per week, and that they had made me seriously ill in the six weeks or so between early symptoms and surgery. So I knew I could count on weeks only. Months would be lucky. My family says they heard the surgeon say a year maximum, but I somehow never registered that.

I was at peace with the possibility of this short time, even though much of it would be spent in recuperation from surgery. Its effect was a beautiful intensity. In those first weeks, every moment with my dear ones was brimming with love and emotion that burst out in both delighted laughter and heartbroken tears. Being together was a gift. We embraced, we held hands; we shared our thoughts and we kept silent. We’d never been so close. My quiet moments alone were spent in awe of the miraculous beauty of the flowers at my bedside and in joyous contemplation of all I had to be grateful for. This gratitude, as I have written elsewhere, is simply the flip side of grief. We can be grateful for what we have been given, just as we can grieve losing it. Both grief and gratitude were intense. All of our blessings are these two-sided coins; we hold on to them, for they are precious beyond measure. But they can be lost, just as they can be spent. Now I was losing the whole pocketful, all that I held dear. Maybe, instead of lost or spent, they could be given away… That’s what I had to do.

But soon the pressing question of chemotherapy treatment began to disrupt my peaceful state. I had to make a decision, and it wasn’t an easy one. There was conflicting advice from various sides, sometimes disapproving of the others. There was great pressure to somehow get better, to fight, to pray for a cure that could only be miraculous. But on the medical side, there was only palliative chemo. Palliative chemo is not something I would consider advisable under most circumstances. While curative chemo can work miracles, giving people decades more healthy living, palliative chemo is meant simply to extend life a little bit longer. My doctor told me it might give me a few more months. But it could be a few more months of unpleasant side effects: a few more months of sickness, not of health. I had already accepted that I was dying, possibly very soon, and I was ready enough. Those weeks I spent in indecision were stressful; the more I listened to others, the less I was at peace. I lost my sweet bliss.

Many dying patients opt for palliative chemo because they are afraid of death and will do anything to keep it at bay for as long as possible. With recent advances in medicine, that can often be quite a lot longer. But there’s always a trade-off. The hard-won time is likely to be increasingly sick time. It can be much sicker time than without chemo, especially with cancers that don’t respond well to chemotherapy. Some desperate people with fatal cancer get so sick with multiple rounds of ineffective chemo that they die even sooner than they would have if they’d simply let the disease take its natural course. I am lucky that I’m not afraid of death, so I could make a more reasoned decision about my time.

A scan soon after my surgery in March had shown that the tumour that hadn’t been removed was about three centimeters in diameter. When my next scan about a month later showed a total of fifteen centimetres of tumours in three different sites, I knew my time would be on the short side without successful treatment. I hadn’t gotten much done while recuperating, other than the tedious work of starting to put my affairs in order. I wanted to finish that task. But I also hoped to make it to my younger son’s graduation show in June, the culmination of his three years of incredibly hard work in circus college since courageously completing an addiction treatment program. I hoped to enjoy more conversations with my older son, who in the beginning of adulthood was becoming a cherished friend as much as a beloved son. I also had a grant to complete a writing project for which I’d taken some leave from teaching, and I wanted to finish that too. I realised I would be leaving much work undone no matter when I died, and I accepted that. But if there were a bit more time, there were a few things I hoped to do. With my tumours multiplying and growing that fast, chemo was the only way to possibly get that time, even though the chances of it working were low. If it made me too sick, I could just stop it.

So that’s what I did, and I was lucky to get more time. But that time was very different from those first weeks of blissful connection and peace. Once I’d finished the urgent tasks of the will and the trust and advance medical directives, etc., I had time for other things. Much of that time was lovely and sweet. I had time to visit with friends, to correspond with others, and to write. I had time and enough health to go for walks, and even a family vacation. I knew that time was a gift. We’d all been on high alert for my imminent death, all hard at work on the emotionally exhausting task of coming to terms with this loss. Now as the time stretched out, we needed to relax, pull away from each other a little and take some space for ourselves, and get back to ordinary life.

But for me, life could no longer be exactly ordinary. The future is so much a part of our everyday thoughts and plans and activities; it was difficult to pull that part out and still be excited about things. I had just moved a year before and hadn’t finished furnishing my new home: should I still go out and buy the chair I needed for my living room? Should I start knitting that scarf? Or plan time away in July? Should I get back to work on that manuscript? Or should I simply sit in meditative enjoyment of each precious moment? Should I do, or just be? I was confused. How was I to make the most of this time? I wanted my children to continue with their ordinary lives, but I also wanted to be with them as much as possible. I wanted my family to take their summer vacations and not wait around for me to need their help, and though I cherished my solitude, sometimes I got lonely.

I always liked to do something creative, but with no idea how much time I had left and with the ups and downs of the chemo cycle, it was hard to commit to a project. Most days I didn’t have much energy, and my mood was getting pretty low. I was letting whole days slip by me with just a bit of facebook between naps. Disconsolate, one day I wandered into my studio and looked around. On the floor was a pile of colourful tissue paper from the many gifts I had received in my convalescence. (I never throw anything out if I can see any creative potential in it!) Suddenly I remembered the tissue-paper flowers I must have made in kindergarten. Maybe I could make those! I looked up the instructions online: quick and simple enough for preschoolers. So that’s what I did, and I was so excited! It was the perfect thing for me to do with the tiny bit of energy I had that day, and the results were gorgeously festive. Enormously cheered, I happily hung them up on the wall above where my pretty willow casket will be displayed once I go.

That experience reaffirmed for me the importance of continuing my creative life, even if I didn’t have time to write a novel or paint the huge painting I was imagining.

When the chemo started to make me so sick that I wanted to do little more than sleep all day, I started to feel depressed. That’s when I decided to stop the treatment. It didn’t take long for me to feel a great deal better. And when the massive swelling that caused so much discomfort mysteriously subsided (my pain doctor now thinks it might have been an unacknowledged chemo side effect, rather than the claimed lymphedema) I had more energy. Then I was in very good spirits: I started swimming, I could go out again, enjoy sharing a meal again. How lovely it was to be mobile and have energy! This was the bit more time that I’d bargained for.

During that time I stopped writing. It wasn’t a decision, but I suddenly wanted to read instead, mostly about death, but also my literary favourites, like Virginia Woolf’s To the Lighthouse, which was a great pleasure. Some of the books I’ve found have fuelled my contemplation, expanding my ideas about death and dying as well as life and living. Then suddenly I was ready to write again. So here I am!

Medically, I am no longer in treatment for my sarcoma. There are other treatment possibilities, but all are palliative, with a lower chance of positive effects and a higher chance of worse effects. It doesn’t really make sense to pursue those options. So I’m only in palliative pain treatment now, which so far involves just checking in with my doctor once a month for pain management prescriptions. I am very blessed to not be troubled by any other major symptoms for the moment. I can just enjoy life!

When I focus on the medical aspect of this ordeal –doubting my decisions, wondering about other treatment options, imagining my tumours growing, worrying about what symptoms I might have in the near future– I am at my least happy and most stressed. When I ignore all that and turn my focus to other things –the beauty of the day, being attentive to whoever is with me, writing, or reading something that is intellectually stimulating– I feel much better. In fact, I feel wonderful!

I don’t know what the next phases will bring. My younger son is leaving very soon for Scandinavia for a few months on a performing contract. I’ve had to do hard grieving about that, thinking that I might never see him again. But I have somehow come to peace even with this. My palliative nurse, however, says she doesn’t see me dying anytime soon. I do look surprisingly healthy for a dying person! So I can almost hope that I’ll still be around when he returns in November—though I keep reminding myself how fast and suddenly this disease can progress.

A bit more time has been a gift, a complicated gift, and one I feel it wise not to be greedy for. I’d rather continue to be grateful for it, and accept its limitations. It won’t get me out of the dying part of this ordeal. And any more time could have a high price in health, making it hard to enjoy.

I know that the time ahead will include increasing bodily discomforts that will demand my attention. I try now to be strict about not letting myself dwell on that ahead of time, as it does nothing but ruin my enjoyment of this moment. It is my hope that when that end time comes I will be able to rise above the physical to a spiritual space that allows contemplation of the great mystery of death, enjoyment of life’s beauty and wonder at its endless complexity, and most importantly, the giving and receiving of love. But in case I am not able, I am doing so now; that is what the great blessing of this time is for in any case.

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Roy’s Blog: Not alone

the long goodbye

Not alone.

Susan had her surgery in Sherbrooke, Quebec. That is where she received the news and that is where she told me her diagnosis. It was March 8. Winter in Quebec. I made my way back to my hotel room, which thankfully was only a kilometer away from the hospital. Except for my teenage sons in Montreal, I don’t have any family within 3000 kilometers. I sat on my bed and I called my sisters, Betty and Susan (yes, I have 2 Susans in my life). I called them that night and explained as best I could what was happening. Both of them are experienced nurses and they knew what the language meant, knew the blunt force of the diagnosis. They asked me what I needed. Oddly enough I knew what I needed. I needed to be not alone.

Go figure.

Usually I’d wait a period of time before…

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Roy’s Blog: Being There

the long goodbye

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.

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Roy’s Blog: In the Moment

In the Moment: “Embracing our own life seems to be so damn hard let alone seeing the wonder in someone else day to day, day after day.”

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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.

Photo 2017-06-04, 10 05 27 PM

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.

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Five Star Blog

A bit of recognition for my blog by another blogger, Elan Morgan: Five Star Blog Roundup 410.

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Roy’s Blog: The Long Goodbye

Roy has written another beautiful post, The Long Goodbye. You can read it here: Roy’s Blog

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Roy’s blog: Telling the Kids

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.”

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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.


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.

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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.

2010-09-06 01.15.47

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.

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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.

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

And for what to say to someone whose loved one has been diagnosed with terminal cancer or any other terrible illness, see my boyfriend’s blog,  And sometimes things go the other way!

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Recommended Reading

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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.


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.

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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!

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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.

me in lilacs

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

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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!

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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.

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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

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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 from crippling arthritis and serious health crises:

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.

I am presently living magical moments in which there is nothing but the contemplation of life. A feeling of unequal lightness and liberty that liberates me at all levels of my being. After all these years, I will soon be free and detached from my physical envelope. I await my passage into the other dimension with enthusiasm and joy. I experience death as a stage, a rite of passage that is an integral part of human life. Today, I feel the presence of life in me as much as that of death. The two states are present to remind me of the fundamental equilibrium that governs our universe. Whoever lives with fear of their own mortality has never really experienced the true sensation of feeling alive. (my translation)

May his beautiful soul fly free.

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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 hard-earned gray hairs!)

The New Do!

Photo by Roy Cross
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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.

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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!)

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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.

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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?

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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 a challenging treatment program 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.

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