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.