April Update

I’ve realised again that some friends are wondering how I am. My sense of time has never been very good, and it’s even stranger now. So I am amazed that it is already three months, a quarter of a year, since my hospital stay over the Christmas holidays.

I always struggle to answer that question of how I’m doing. I guess the best response is that I have been stable over these three months since I started my second regimen of palliative chemo, which has stopped the internal bleeding that made me so severely anemic in late December. I haven’t had any significant new symptoms, but the tumours and the trouble they cause haven’t gone away either. That trouble is manageable, however, with good pain medication and reduced or modified activity. So I don’t have much to complain about—which means I have much to be grateful for!

I only have one cycle (two treatments) of chemo left, so I will be done April 19. I have no idea what will happen without the chemo to keep my disease progression at bay. I had a few months of stability after my first chemo regimen ended last summer, but I can’t count on that happening again. I know from past experience that when this sarcoma is growing and spreading, it grows fast. There might be another chemo option to try when that happens, but the chance of it being effective is small. I was very lucky with the chemo I’m on now. So all I can do is take each day as the gift it is and hope for a long delay in aggressive disease progression.

The chemo treatments themselves haven’t been too bad in side effects. Physically, it’s never worse than a mild hangover. I usually need to rest more for a few days, and there have been a few minor digestive issues and side effects. Mild edema and the steroids I’m on have led to weight gain and that moon-face effect, but that’s not as bad as the extreme edema (30 pounds of fluid!) I endured with last summer’s chemo. But I don’t like not looking like myself. I didn’t mind being bald, but bald doesn’t look so good with chipmunk cheeks. Now I look like Casper, the friendly ghost!

Casper

The steroids also affect my mood, making me more energetic physically but also irritable and anti-social. That means most of the time I prefer to be alone, getting practical things done. I think the chemo affects my mood as well. Last summer I didn’t complete all six cycles of chemo because it seemed to be causing mild depression. (I wasn’t on steroids then.) This time I am not quite depressed, but I have been feeling rather dull. I can’t tell if that’s from the steroids or the chemo. I was in excellent spirits in February, but since then I have declined into a slightly unsociable, mild apathy. It’s not severe or serious, but it’s not especially fun either. Like the chubby cheeks, it doesn’t feel like me. Being such uncharming company has me concerned about not being a great partner for Roy, though as usual he never complains about how little he receives from me. He wanted me to mention here that he is rather dull too, but I’ll leave that joke to him!

While my mood has meant I haven’t been actively seeking company, I know some friends have been hesitant to visit or reach out, not knowing how I am. And flu season had many staying away for fear of bringing viruses while my immune system is compromised by chemotherapy. But I have been happy to still be well enough to receive some visitors and go on modest outings, despite my somewhat unsocial state. I am especially looking forward to some gentler weather (this week’s sunny skies brought freezing temperatures of -10 C here) for tea-time out of doors! Maybe soon I won’t just look like Casper but be as friendly as him too!

(More posts coming soon.)

Advertisements
Posted in Other Stuff | Tagged , , , , , | 16 Comments

A short video on dying

Dr. Kathryn Mannix, a palliative care doctor, describes how gentle the dying process can be in this short BBC Ideas IMHO video, “Dying is not as bad as you think”.

Posted in Other Stuff, Uncategorized | Tagged , , | 9 Comments

On Spring

I truly didn’t think I would see another spring, but this past week we did indeed officially reach the Spring Equinox! Of course, where I live it’s hardly spring in any real sense. Mounds of snow cover the gardens, and the other day the wind was so cold I had to cover my freezing face with my scarf while walking into it. The sun is stronger and the days are longer, but otherwise winter has hardly loosened its grip. Soon it will be April, and the melting will quicken. I know one day the spring flowers will be pushing up again, but it’s still hard to believe at this point.

not-quite-spring.jpg

I like to celebrate the Equinox as a moment of balance for our planet. Dark and light reach an equilibrium, reminding us that life and death have equal and inter-dependent roles in our world. All life springs from death. The light pushes back the darkness. Hope eases us from despair. Now that we are in spring, the light, the life, the hope and happiness, are in their waxing phase, increasing until we reach the Summer Solstice. The Equinox reminds us that the extremes of the Solstice dichotomies are not the one truth; our polar opposites have their moments of equality. And none of these moments are stable; we are always passing through them, shifting almost imperceptibly towards the next moment of change. For change is the one truth that we can count on. Nothing will stay the same. What we cherish today will be lost tomorrow. What lives will die. And new life will come from that death.

These seasonal cycles are quite dramatic in the northern latitude where I live: the winter is a long and often tiresome combination of bitter cold or slushy mess, the spring is a fast and profuse bursting of new life, the summer steamy and intense, the fall a mellow glory of fiery colour like a phoenix. I have always loved the turning of these seasons and the yearly lessons of each quarter turn. From spring equinox to summer solstice and from fall equinox to winter solstice, I am reminded of this balance of renewal, the cycle of birth and death. It has been a comfort to me always to remember that though the light will fade, it will also return. There is no need to despair; we have only to honour the moment we are in and all it has to offer, knowing it will soon change.

Here all life in the garden dies or goes dormant in the fall, and we have six months to wait for the green of life to return to the trees and the earth. This waiting demands some faith. Perhaps I should credit my lack of patience for motivating me to find something worthwhile in the moment—I certainly can’t wait that many months for beauty and joy! So I learned to love the stark beauty of winter, its quiet stillness and subtlest colours. When I wrote a book of poetry structured around the seasons, winter proved to be the richest season for me. Here is one of the poems:

Last night in the moonlight

Yet for us as animal life forms, the renewal of life is not for ourselves as individuals (I don’t believe that when I die I will be physically reborn). For most of us, the renewal of life comes from our children, whether our own or those of our fellow humans. The cycle of life for humans is far longer than the year’s circle of seasons, but its lessons are the same: we need not despair; everything will change, whether we want it to or not; we have only to live this moment in all its mystery.

mvimg_20180413_1642591457634291261764117.jpg

This was something I was coming to more fully realise as I turned fifty just before I fell ill. Approaching menopause is an unapologetic reminder to women that youth and beauty, vitality and desirability do not last; that our bodies, no matter how hard we try to keep them young, will move into the winter of life—unless we die first. My own aging was undeniable. My children had grown up and moved out. I saw most of my friends struggling with the challenge of aging and dying parents, and knew my own parents, though still healthy and active, would eventually follow. Their parents were long dead already. We humans, like all life forms, have our cycles too.

My first fifty years had been mostly about growth and gain: reaching adulthood and having children, making a home, developing a career, building relationships, growing a garden, etc. I saw that, as I passed beyond the half-century marker, my life would increasingly be about loss. Not just physical loss, but also social loss in my life as a mother, as a daughter, as a worker, as a lover. Material loss too: the family home where I’d raised my children was now too big for just me and would need to be sold. So many things I cherished would have to be given up. Loved ones would die. I faced the fact that, eventually, everything would be lost and I too would die. I wasn’t happy about it, but I would have to accept it. My illness has accelerated this process of loss, but it hasn’t changed the essential truth: all this, all I hold dear, just as much as all that causes suffering, is temporary.

That is how it is, and how it must be.

Posted in On Dying and Living | Tagged , , , , , | 12 Comments

My Article in the Huffington Post!

I’m pretty thrilled to have this piece in Huffpost Personal published today! Yesterday, International Women’s Day, was the anniversary of my surgery, but the conversation I recount in the first paragraph of this article happened exactly a year ago today. How’s that for the Universe lining things up!

I’d like to thank my dear new friend Brenda Keesal for connecting me with Noah Michelson, the amazing editor at Huffpost who took this on. Do pay Brenda a visit at her blog burns the fire: her gorgeously told stories of life and death and especially love are always an adventure of wondrous inspiration as she shines her brilliant, unique light into the odd corners of our beautiful world.

Posted in On Dying and Living, Other Stuff | Tagged , , , , , , , | 12 Comments

On International Women’s Day

Today, International Women’s Day, is the anniversary of my surgery and diagnosis. I met my surgeon only moments before being wheeled into the operating room. (I had met her colleague once, but he was now away.) She was hugely pregnant and hungry, having already been in surgery all morning, and she was about to run off to get lunch before starting on my hysterectomy. But she came by my gurney where I lay completely alone in the large pre-op space. I was weak with fasting hunger and dehydration, and still shaky from having almost fainted while an epidural was inserted into my spine for part of my anaesthesia. This woman was so youthful and bright and healthy and energetic, full of not one life but two (her fourth child, I found out later)! It was such a wonderful contrast, I couldn’t help but smile.

She introduced herself, and then she told me what none of the many specialists and technicians I had seen through several scans and tests had yet had the courage to tell me, though it had been the stated concern for a month: from my recent PET scan, she could see that the rapidly growing mass in my belly was most certainly not a benign fibroid but a very rare sarcoma, a sarcoma we both knew was deadly. She was 100 % sure, though I’d been told all along only pathology could confirm the diagnosis. She assured me she would do her best to remove it all, and we would discuss further details, like the recommended chemo, tomorrow. She found tissues for me while I cried quietly, and then she ran off to eat.

I had many thoughts then, but one of them was that I was so pleased to have this woman as my surgeon. It seemed oddly fitting, if also ironic, that a pregnant woman would be removing my uterus and ovaries, and that she was in the process of bringing forth life while mine was now on the path to ending, and all on International Woman’s Day.

Susan eating in hospital

Happy to eat even hospital food after a few days of no food at all following my surgery!

A few minutes later I was wheeled into the operating room and awkwardly transferred, still crying, onto the rather terrifying, crucifix-shaped operating table. I was grateful when the anaesthesiologist introduced himself and wasted no time administering his injection while a flurry of nurses prepared my body for what ended up being over six hours of surgery. I hope they brought my surgeon plenty of snacks and a stool to sit on to get her through that! However, I know she got a break while a general surgeon was brought in for a surprise bowel resection when an invasive tumour was found there. In fact, my surgeon confessed that after opening me up (a vertical incision from my pubic bone to above my navel) and seeing how extensively the tumours had spread, she almost closed me back up again with out removing anything. I am grateful that she took on the task and gave me this year!

And so on this day I honour all women doing their jobs to the best of their impressive abilities, regardless of the circumstances, including the demands of their reproductive bodies, and for less pay than their male counterparts.

Posted in On Dying and Living, Other Stuff | Tagged , , , , , , , , | 18 Comments

Audre Lorde on Dying Full of Fire!

This is extraordinary poet Audre Lorde, on how to really live while dying:

I want to live the rest of my life, however long or short, with as much sweetness as I can decently manage, loving all the people I love, and doing as much as I can of the work I still have to do. I am going to write fire until it comes out my ears, my eyes, my noseholes — everywhere. Until it’s every breath I breathe. I’m going to go out like a fucking meteor!

What an inspiration! She wrote this in the year after being diagnosed with liver cancer, metastasized from earlier breast cancer, at fifty. Fortunately for all of us, she survived several more years and did indeed write fire!

Audre Lorde

This is also from her journal as she reflects on impending death and her life’s work as a revolutionary Black feminist (or Womanist) writer:

We all have to die at least once. Making that death useful would be winning for me. I wasn’t supposed to exist anyway, not in any meaningful way in this fucked-up whiteboys’ world. I want desperately to live, and I’m ready to fight for that living even if I die shortly. Just writing those words down snaps every thing I want to do into a neon clarity… For the first time I really feel that my writing has a substance and stature that will survive me.

I have done good work. There is a hell of a lot more I have to do. And sitting here tonight in this lovely green park in Berlin, dusk approaching and the walking willows leaning over the edge of the pool caressing each other’s fingers, birds birds birds singing under and over the frogs, and the smell of new-mown grass enveloping my sad pen, I feel I still have enough moxie to do it all, on whatever terms I’m dealt, timely or not. Enough moxie to chew the whole world up and spit it out in bite-sized pieces, useful and warm and wet and delectable because they came out of my mouth.

(Thanks to Kelly McKinney for sharing this post about Audre Lorde and setting me on a morning of reading her again.)

Posted in Other Stuff, Uncategorized | Tagged , , , | 7 Comments

On Technology

I had hoped my phone would outlive me. I hate wasting my time on technology, and I didn’t want to spend any of the precious little time I have left learning how to use a new device. Already last month I had to get a new laptop, which I still haven’t quite got used to. So I’ve been hanging on to this old blackberry with its tiny mechanical keyboard for coming on seven years. People laugh when they see it. I try to claim retro status, as if it’s almost cool again. I’ve never even used its more sophisticated features, like access to the internet or email or apps. For me it was always just a texting machine, alarm clock, and phone. Now and then I snapped a photo or used the calculator. But it in all those years it has served me more or less faithfully, never needing a repair. Even the original battery still charges.

But then it stopped picking up a signal. I brought it in and we tried a few things. Nothing worked. Since I no longer have a land line, not getting a new phone wasn’t an option. My dear son, the one studying computer science, not the one who inherited my aversion to technology, met me at the store for moral support. And thank goodness he did, as the salesperson and I couldn’t find a common language (though we were both speaking English). Now I felt old and retro, but not cool. In the end, Oliver took care of everything, speaking to me, then to the salesperson, then back to me, like an interpreter. I stopped even listening to or addressing the salesperson, as if I didn’t understand. Not the type of social interaction I prefer or am proud of, but the only way I could cope with the situation and leave with a phone. I wish I were more evolved, but I consoled myself by thinking she could add me to her horrible-customer stories to amuse her co-workers.

My other son told me what kind of phone he would like to inherit, so that took care of some of the parameters. Oliver googled online reviews. I made colour selections. We ate some cookies I had brought to sustain us through the signing of the contract. Finally I left with my first touchscreen device, which includes a decent camera so I can add more photos to my blog posts, which I just figured out how to do on my phone. I will probably still be learning how to use it until I die. But I can now access my blog and all of you right here on my phone! And my son is pleased to have both a decent phone and a laptop to inherit!

So thank you, Oliver! And you’re welcome, Nathan!

Posted in On Dying and Living, Other Stuff | Tagged , , | 22 Comments