Spring Update

I’m not on my deathbed just yet! Friends are surprised when they see me out and about at a café or art gallery, looking unexpectedly well (despite also looking grotesquely pregnant), so it seems another update is in order.

The short version

I have been quite stable with palliative chemo since the winter and very happy to be feeling better as a result. I have no idea how long this will last, so I am enjoying each day as it comes!

The long version

I’ve been feeling much better since starting a second round of palliative chemo with the new year, so I knew the chemo was working. Finally in April I had a CT scan, and we were all happily surprised to learn that, though one small tumour on my bladder had grown a little, most had pretty much disappeared. My oncologist said he’d never seen this sort of shrinkage before, so he took my case to the tumour board to discuss what steps to take next. They want to look into the possibility of radiation on the one growing tumour, though it’s probably too large for that. They also want me to continue chemo, believing that if I stop, the tumours will quickly grow back, and since I have been tolerating the chemo quite well with only mild side effects, they think I can handle more.

My city garden nook for tea with friends.

But I would like to take the summer off, both to enjoy this time I have been blessed with (the whole point of the chemo) and to let my body recover. My father has made me another appointment with a specialist in this very rare disease at Sloan Kettering in New York, so we’ll see what she suggests. My guess is she’ll also recommend a break from chemo. The last two times I was in New York City to see her I was too ill to do much, so I’m hoping to still be feeling this well so I can enjoy a few days walking about the city. There is so much art to see!

The tumour news is good, and no large tumours also means less pain to manage. I can sit much more comfortably now, so I can enjoy outings to cafes and linger at the table. But I also still have malignant ascites (accumulation of fluid in the peritoneal cavity) that cause abdominal distension, pain, and discomfort, restricting my activities somewhat (no yoga or exercise, and only a little gardening). They also indicate a very poor prognosis, as this is normally an end-stage symptom. I have other swelling too from chemo and steroids, so I’m still about twenty pounds overweight (a lot on a small person). I’ll see if I can get another drainage of the ascites, at least — a super-quick weight loss program!

Ultimately, however, I suppose the bad news negates the good news in this situation; I don’t know exactly how this disease will progress, but medical opinion is that it will.

But I am not suffering (thanks to effective pain medication!) and remain weirdly healthy, energetic, and happy.

I am especially delighted with the gift of another spring and am taking every possible moment to enjoy the flowering and greening of the world around me. I’ve been having lots of fun photographing some of the wonders of nature with that new (is a few months still considered new in the realm of technological devices?) phone that still causes me grief. It has a pretty good camera, though! You can see more of my photos on Instagram if you’re interested.

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On Trees

It is May Day, but spring has been late to this part of the planet. The daffodils are just starting to bloom, but their trumpeting seems tentative, not blasting like some springs, and the tulips aren’t yet brave enough to stretch their necks up. Leaves are a long way from gracing the trees: it has been six long months since the world was green. But the snow is finally gone and it’s warm enough for morning walks.

This reawakening of nature has nudged my spiritual side awake. My somewhat regular meditation practice, which I took up last fall (I have over the years meditated only sporadically but fruitfully), was disrupted by my pre-chemo illness at the start of winter. Then my medications (very stimulating steroids) made it too difficult for me to be still for my evening’s hour of meditation in the bath (the most comfortable place for me physically). I’ve since lowered my dosage, but now my piccline (an IV catheter in my arm that stays in long term) means no baths.

I’ve missed being in that meditative space, so it’s time to find another way in to a regular practice. I’m doing my best now to devote an hour of the day to spiritual pursuits (I like early morning, though that’s also my best writing time). I don’t want to call it meditation, since some of this time might be contemplative reading, or a nature walk, or even journal writing. I don’t think it matters, as long as my focus is on connecting to my spiritual place in the universe. I especially like walking meditation, which is most wonderful in the woods when I can get to them.

tree-with-roots-drawing-34When I sat in a brief meditation one day last week with Roy, the image of the tree came to me. I thought about the mirrored structure of the root system below ground and the branches above. The roots draw nourishment from past life, from dead organisms that have decomposed into fertile soil. The leaves on the branches gather energy from the sun, the light of the present moment. The tree then expresses itself by flowering and producing the fruit and seeds of the future.

As humans, we do this too. We are rooted in the past, formed by all that has gone before us—death, in other words. But we are also taking in everything from the present. And these two sources, past and present, or death and life, inform the expression of our selves and our creative spirit; the two together produce the gifts we offer the universe in turn—our own flowering of self and the fruits of our being.

more blossoms

So it is essential that I look to the past and understand what has come before me, as well as cultivate my relationship with death itself. Heidegger (my philosopher friend Susan Judith has introduced me to his ideas about death) would agree with this: he believed that only those who truly grasped mortality could be authentic and fully human. But it is also essential that I engage with the present moment, as the leaves with sunlight. These two dimensions are what help me to develop as a person as well as to express myself, offering my gifts to those who survive me, to the future. These pursuits will continue as long as I am alive, to the very moment of death itself.

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On Chemo

I have just completed my second round of palliative chemo. People keep asking me if I’m happy about that, as most patients celebrate completion of chemo as the first step to wellness, especially when they finish with no evidence of disease (NED). At my former hospital, a bell (thanks to The Bell Fund, which also provides comfort kits to chemo patients) is rung in celebration of the end of each patient’s final cycle.

Things are different for me. This chemo has kept me stable since the beginning of this year, but there is no telling how my tumours, which are still there in my belly, will respond without chemo to keep them at bay. They may go straight back to rampant growth, and I could be seriously ill again in no time, as I was in December. Or if I’m really lucky again, my disease won’t progress for a few months, like after my first chemo regimen, and I’ll have a nice spring and bit of summer. At this point, I have no idea which it will be, or if there are other possibilities. So it is hard to be excited about this chemo being over.

It is also impossible to plan. All I can do is remind myself that I have today and make the most of that gift!

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Me and my snuggly cat Piggy, almost ready for the day.

Now that I’m on the topic of chemo, I have a few other things I’ve been meaning to share. I sometimes hear of people, when newly diagnosed with cancer, refusing to try chemotherapy in fear of the side effects. I used to be pretty negative about chemo myself, especially for palliative patients. Some cancers simply don’t respond well to any of the chemicals currently in use, and there is little point in pursuing such treatments, especially when they are so toxic. I’ve read of so many patients who, desperate not to die yet diagnosed with terminal, untreatable cancer, would try anything to prolong their lives. They often end up making themselves sicker and weaker with ineffective or trial chemo than they would have been from their cancer symptoms alone—and even thus hasten their deaths. Such cases are discussed in books by physicians like Atul Gawande’s Being Mortal and Sherwin B. Nuland’s How We Die (both excellent books). When I was first diagnosed, my initial position was to not do chemo, since the chances of just partial success were so low, but I changed my mind and am glad I did both times. I would almost certainly be dead already without it. Instead, I have enjoyed considerable wellness, even in the thick of the chemo treatments.

chemo warning

There is an important difference between curative chemo and palliative chemo. Curative chemo is the kind that can actually make cancer go away completely and even permanently, which is a miraculous thing. Sometimes it works very effectively and even immediately. Sometimes it’s a little more hit or miss. This all depends on the kind of cancer and the specific chemo regimen it is matched with.

Palliative chemo, while it may follow the same protocol as curative chemo, is simply meant to extend the life of the terminal cancer patient by slowing or halting the growth or spread of the disease for a time. At its best, it also relieves some cancer symptoms, as it has for me. Some terminal cancers are not treatable even by palliative chemo, though sometimes people try anyway.

There are many different chemicals used for chemotherapy, and as one patient next to me in the treatment room noted, they have some very fancy names:

  • Gemcitabine
  • Docetaxel
  • Doxorubicin
  • Carboplatin
  • Vinblastine

to name just a few. (I’m on the first two.) They each also have their own potential side effects. Not all of them, for instance, produce baldness, that hallmark of chemo. Nor do they all lead to vomiting or mouth sores. Most of us imagine people desperately hunched over toilets, puking their guts out after chemo. It isn’t always like that anymore. In fact, chemotherapy’s reputation for producing debilitating illness is no longer accurate since advances in research have fine-tuned treatment protocols to minimum effective doses. Many people are able to continue to go to work throughout their treatment or to continue their regular routines with only minor modifications. I have witnessed some women showing up to the chemo chair as if to an appointment at the beauty salon before a fancy lunch date—they look fabulous!

Physically, I have handled these months of chemo very well. With two treatments in a three-week cycle, I usually have a few days of fatigue when I take some long naps, and maybe a day or two of slight nausea that is treatable with very effective anti-nausea medication. Then after a few days I usually feel as well and energetic as normal (thanks to other medications for pain that I take every day). As far as effects that impact my everyday life and wellness, that’s about it. I’ve often noted that my days post-chemo are no worse than a mild hangover from a couple of glasses of wine.

Some chemo side effects:

Chemo_Effects_Pinterest_crop.jpg

Of course I’ve also experienced a range of the more visible side effects, including hair loss. And my fingernails did become discoloured and partially fall off (painlessly) last summer. This is something the medical professionals don’t like to mention—in fact in the literature I was given they only called it “nail changes”! The one that is bothering me the most now is the weight gain with “moon-face” from steroids (not chemo), which I don’t like because I don’t look like myself. And lately there’s also been a weird thing with my eyeballs, but never mind that.

All in all, I have felt much better on chemo than before it (when I was terribly weak with anemia caused by internal bleeding), so it’s been definitely worthwhile for me to pursue this treatment. If you happen to get cancer (and sadly, chances are about 1 in 3 that you will) there is no reason to say no to chemotherapy for fear of the side effects. They really aren’t necessarily that bad, and the therapy can be discontinued if they are (allergic reactions are one of the more serious problems). But if you’re taking palliative chemo that doesn’t work and is therefore making you sick for nothing, it would be wise to rethink that and come to terms with death.

poison

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Roy’s Blog: Let’s Dance

Here’s another inspired piece of writing by Roy about love and dancing and him and me on his blog.

Roy and Susan smiling

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On Curiosity

The theme this month at the Unitarian Church (a non-doctrinal, inter-faith community with a long history) I go to is curiosity. I like this: curiosity sounds like such a positive, life-affirming, even playful state of being to me. It’s also essential to learning. Curiosity demands that we arrive with openness, with presence, and that we leave what we think we already know aside and be prepared for something new, maybe even something unexpected. Maybe even something wondrous. Curiosity demands that we be engaged in the moment, attending to whatever presents itself.

This type of curiosity is akin to listening, and I think true listening is something that we can never do too much of. When a friend visits and I ask how she is, I am being curious in a good way: I want to know her more deeply. I am ready to listen. I do my best to leave aside what I might think I already know about her to be truly open to her story.

Alice in Wonderland

Yesterday I brought a book to the two appointments I had at two different hospitals: Joan Halifax’s Being with Dying, which had been recommended to me by a couple of people. I always appreciate Buddhist teachings, and in these days of uncertain future I need especially to hone my practice of being in the moment. In her introduction, Halifax writes of “not-knowing.” This tenet, she says, “invites us to give up fixed ideas about others and ourselves and to open the spontaneous mind of the beginner.” This sounds a lot like the state of curiosity to me. Halifax notes that

Our attitude of openness and inclusiveness is essential as a basis for working with the dying, death, caring, and grieving. The only way to develop openness to situations as they are is by practicing the partners of presence and acceptance. We give our best to experience everything as totally as we can, not withdrawing from the vividness of any experience, no matter how scary it seems initially.

Openness, presence, acceptance. These are what we need to live fully in the moment. We can bring this sort of curiosity to our everyday lives. We can also bring it to our contemplation of death.

curious cat cartoon

In my last post I wrote about the role of imagination in confronting our mortality. While curiosity seems like another good strategy against the avoidance and fear of death, it might, as my new assistant Lauren (who is also my son’s very smart and lovely girlfriend) suggests, actually be a first step towards imagining. She notes that “we’re all curious about death (to varying degrees, of course), so we’re already partway there. I guess it’s about not letting the fear get in the way of exploring that curiosity.”

So which aspects of death are you perhaps already curious about? And which are uncomfortable for you? Would it be possible to let yourself be curious about those instead?

Maybe it’s time to let your morbid curiosity loose!

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On Imagining

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My journal from 2016, which I’m still writing in today. I like the play on the word decomposition.

Last October (2017) I was sitting in a café with Roy and took out my journal to write. I didn’t feel like writing. The cafe was too crowded and busy, not a space for that kind of inward focus. So while I waited for my hot chocolate I leafed idly back through the pages to the year before, October 2016, before I knew I was ill. I read that at the time I had been bothered by a strange, persistent lump and swelling in my calf, which I now realise was a blood clot, a symptom of this sarcoma that was already growing unsuspected in my uterus. But that day in 2016 I believed I was still healthy and was writing about what to do with my day, as I often did. This is what I wrote:

I will have to deal with organizing stuff here a bit first. Still working at chaos reduction, putting my affairs in order. I don’t want to leave a mess for others. Not that my death is necessarily imminent, but I don’t want to be scrambling with that if it becomes so. I had this thought the other day that a cancer diagnosis –the fatal kind– just means you have a better idea than most (or than before) when and how you’re going to die. I also had a spontaneous bliss rush as I lay in bed wondering what was wrong with my leg and suddenly thought it could be cancer. That was weird, but it felt peaceful, like a gift, to feel that way. Not bitter or fearful at all. I do hope that when my time comes I will be in that sort of space. Filled with light and acceptance, gentle love. I need to remind myself to find that place every day. Hard to be there every moment, but more reminding myself should help.

Some people are surprised that I have been able to accept my terminal diagnosis so immediately and peacefully. That 2016 journal entry, I think, explains why in part. I was prepared. I had considered the possibility and processed it. I had imagined it, something I did often enough. And I had received that strange gift of peaceful bliss as an unexpected result of thinking about it. I have no way of explaining that moment, other than to see it as a gift. I don’t know where the gift came from exactly, though I usually just think of it as a gift from the universe. There were other unexpected gifts of that kind over the months leading to my diagnosis, and I was grateful for them too. One was a simple vision of profound connection beyond the limits of this life –to all life, to the entire universe– as I looked upon the trees in my garden from my window; this was also accompanied by a sense of bliss.

When the real-life diagnosis came, I actually was immediately filled by light and acceptance and love.

Life in Death by Rebecca Louise Law

Life in Death, installation by Rebecca Louise Law

I can’t demand such gifts, but I can certainly prepare myself for anything in life by imagining it. Roy noted recently that people often say to him that they can’t imagine how he can do this. Some even declare that they couldn’t do what he is doing. This is nonsense, of course. We can all get through far more than we think we can, especially when we don’t have the choice. But many people banish the thought of disaster or misfortune. Many are superstitious in ways they don’t even realise, believing that the very thought of death or any unwanted thing will bring about the reality. (Would that our thoughts were that powerful and could bring forth all we desire instead of what we fear!) This means not imagining these things ahead of time. And thus being unprepared.

Imagining death or disaster or any other dreaded thing might seem like a morbid thing to do, but for me it was quite useful for bringing a sense of peace and preparedness rather than anxiety. (If you already suffer from serious anxiety I wouldn’t recommend this, since you are probably already over-imagining things going wrong. A different approach is probably needed if you are anxious and get stuck on the negative side of imagining rather than crossing into favourable possibilities as resolutions. Cognitive behavioural therapy (CBT) has been shown to be effective in helping change those patterns for those suffering from anxiety. You can ask my boyfriend Roy about that if you want; he’s over at his blog, The Long Goodbye.)

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From Rebecca Louise Law’s Flora & Fauna Editions

When worried about something, I used to let my imagination loose and imagine the most dreaded outcomes in dramatic detail. I recall one night as a youth when my parents had driven out to a distant party in the country. As the night grew late and they still weren’t home, I worried and started to imagine the worst. Much of this was imagining how I would handle it. How would I answer the phone call or the police knocking on the door? How would I respond when I went to identify the bodies? How would I embark on my life as a young-adult orphan? How would I mourn this loss? I imagined a variety of reactions, including terrible grief and, eventually, acceptance. Thankfully nothing bad happened in the end, but I exercised my faculties for responding to tragedy, a sort of practice run. I believe I would have been less shocked with a bad outcome and better able to respond as a result. My reactions to lesser disasters throughout my life indicate that this has worked to some degree. The bad things I hadn’t imagined ahead of time were more difficult to process.

Jane Eyre cover

The edition of Jane Eyre I read as a child and still cherish today.

As for my own mortality, I have been contemplating that since childhood. I read a lot as a child, and the literature I read never shied away from death. In fact, most of the protagonists were orphaned. And most stories presented at least one death in detail, often with a death-bed scene and a funeral. The internal grieving process was also part of the story, since novels can present a character’s thoughts and feelings. I read Jane Eyre as a child, and though I don’t recall the reading experience now, I’m sure I was much impressed by the gentle young Helen’s peaceful acceptance of her own imminent death. (I re-read Jane Eyre last summer when I decided to revisit my most beloved books in the time I had left.) The Anne of Green Gables series, another childhood favourite, also presented death as a common  part of life that came to both young and old. So though there were no deaths near me in my actual childhood, death was always there in my imaginary life and reading.

I never forgot death was waiting for me and everyone else, including those I loved.

Later, as a circumstantially depressed and suicidal adolescent, I became obsessed with dying. I spent countless hours imagining and hoping for my death. Though desperately wanting to be dead, I would not actually kill myself since I couldn’t bear to inflict such grief on my mother—part of having a well-developed imagination meant I also had plenty of empathy. I consoled myself with courting death in other ways. I tried to think of ways to die “accidentally” or contract a fatal illness. Since I was still young and romantic, this pastime was rich with vivid detail and dramatic story lines. So I was secretly thrilled

Susan in dark days

Me, in the dark days of my youth. I had even painted the walls of my room black!

when I was actually diagnosed with tuberculosis at that time—an illness with so much literary history! How many characters in the dark Russian stories I loved had wasted away from consumption! But alas, my illness turned out to be just pneumonia, which I did my best to exacerbate with plenty of smoking and other self-destructive behaviour. Nevertheless, my sturdy good health asserted itself. But since hoping for death is the antithesis of fearing death, this stage of my life made me quite comfortable with most aspects of dying and death, an ease I have maintained since. Fortunately my suicidal depression also resolved when I finally found a path in the world that seemed right for me and I went back to college. The fear of death only returned when I became a new mother and was worried about dying and leaving my baby motherless and unloved, believing nobody could love him the way I did. But that fear also dissipated as my children grew up and didn’t need me so much.

Now I am back to viewing death as simply the end point of the glorious and mysterious gift of life. It’s perfectly normal, natural, and necessary, if unwanted (though some deaths, especially the violent ones, are anything but normal and natural). Every living being in the world must die, and countless people (over 100 billion, it is estimated here, have died before us since the beginning of humanity). I always want to say something silly, like “And they’re fine,” or even sillier, “And they survived.” Obviously they did not in a physical sense, but in some way I believe they are fine, as our deaths have always been part of the plan. Why would there be anything to fear in that? I know I need to go and leave my place to another. And imagine what wonderful things that next person might do in the world!

hubble-extreme-deep-field

It is also estimated that there are 100 billion galaxies in the universe. (A NASA Hubble Space Telescope compilation photograph)

Death being the end of this life doesn’t exclude the possibility of an afterlife or continued connection to this world in some form. There is still room for whatever belief or faith one may choose. I don’t have proof of another dimension, which also means I can’t claim whatever I’ve imagined as the one true afterlife (perhaps with rules for inclusion and exclusion, like the Christian idea of heaven), but I do like to believe in one. If there is consolation in that belief, that is a good and worthwhile thing. As humans, we are free to believe without evidence and even against evidence (as my philosopher friend Miriam has explored in her book, Believing Against the Evidence: Agency and the Ethics of Belief, and other academic works). Yet we don’t want to use a belief in an afterlife as a way to avoid confronting our mortality.

Especially for those who don’t believe in an afterlife, a negative attitude –fear or dread or denial– about death can be debilitating. People often tell me of their own or their dying loved ones’ fears, depression, or denial of death, and how these have prevented both the dying and the bereaved from finding peace in the end. These feelings, while common and an expected part of the wide range of emotions in the dying experience, are a problem when we get stuck in them and when they keep us from acknowledging and talking about death with loved ones. I had a friend who was so depressed by his terminal diagnosis that he refused all visitors in his last months, and years later it still bothers me that I couldn’t see him. Imagine how those closer to him must have felt! The people who share these experiences with me are troubled rather than consoled by their final memories of a loved one’s death. It doesn’t have to be this way, but it takes some courage and determination to make sure the needed conversations happen despite the fears. And we don’t have to wait for a terminal diagnosis to have those conversations, since death can come at any time, in any way—as we can all well imagine!

(The Gashlycrumb Tinies alphabet book presents Edward Gorey’s darkly whimsical imaginings of odd ways to die. It was one of my son’s childhood favourites. He even made up a new O page for his own name!)

gashlycrumbtinies

I’ve known people who have never admitted to those closest to them that they were dying, despite all evidence to the contrary. And their loved ones never brought it up or challenged them to acknowledge it either. That meant they never got to say goodbye, never made peace with what were in some cases complicated relationships. And I know others who have left it to the very last moment, like one who ended up with forty visitors in one day, all in a rush to say their goodbyes once he finally went into a palliative care home just days before dying. My own boyfriend spent decades under the silent shadow of his father’s death, unacknowledged as imminent in the young family until it had happened, then never spoken of again until they were all adults. So many families miss the chance to express their love and gratitude and find peace in that final letting go, and that loss can lead to painful regret.

This avoidance is understandable in a culture that is constantly feeding our fear of death with endless horrific stories and awful images of murdered bodies on the news, in TV shows and movies. These are not balanced by positive or peaceful images of death, and so our view of death is skewed toward the horrific. Yet as many of us become numb to the dreadful imagery of those distant deaths, we also push real death away when it comes too close in our own lives.

And many experience painful personal loss without the guidance to make peace with it. In our secular society too few of us have exposure to spiritual discussions of death and its broader meaning in our lives. There is little wonder why our culture’s fear and avoidance of death has grown so huge and unmanageable.

Yet finding peace in death is an invaluable gift available to all of us.

snoopy cartoon

My own path to this peace is of course unique to me (and I certainly don’t recommend suicidal depression as part of the way there), but there is a path for each of us, I am convinced. It can begin with simply making the choice to stop avoiding the thought of death. And if afraid or already traumatised by loss, to simply choose to face it, and stay with it for a while, rather than habitually turning away in fear or aversion or pain.

Roy, who lives with anxiety, says his CBT therapist’s advice was to

accept my anxiety and worry, to invite it in for a sit-down. Sit with it for a while, without trying to process it. Just sit with it. The idea being that recognising it, accepting it, seeing what it does to my body, will reduce its negative power over me.

Roy notes that it takes some strength to be vulnerable and accept those uncomfortable feelings. But that discomfort decreases with practice and opens space to examine the source of anxiety or fear.

Then death can be gently explored in the imagination, its varied sides and manifestations discovered. There is so much to our mortality if we look beyond the initial horror and dread we may have learned to feel. I do believe a steady gaze upon death can allow it to reveal its many gifts. These gifts can include a deep serenity, a solid sense of purpose in life, profound gratitude, and other sources of meaning and true happiness. If we learn to receive those gifts, then when death comes upon us or those we love, we will be prepared and freed from fear. We will also learn much about how to live well in the meantime. I know I am grateful for all I have learned so far!

S is for Susan

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Need a Reminder?

It’s not hard to forget our mortality with all the things that keep us busy and distracted all day. If you want a reminder that you will die, there’s now an app for that! Here’s a discussion of the WeCroak app on CBC’s Tapestry. I think this title beats mine for morbidity!

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