Recommended Reading

Check out my reviews of recent books on death, dying, illness, and grief. So many excellent books!

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Some of the books by my side at the moment.

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July Update

It is already July, and the lilies are blooming!

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Brilliantly coloured lily stamens.

I had hoped to enjoy some chemo-free months this summer, but it seems that is not to be. My disease is progressing quickly again, so I will be starting the second line of palliative chemotherapy (doxorubicin and olaratumab) as soon as possible. This drug (olaratumab) has only recently received conditional approval in Canada and isn’t actually available yet except on compassionate grounds. Just waiting for the paperwork to go through!

Much more interestingly, I’ve also been working on a list of excellent books for you to read. It will be posted soon, with updates added as I catch up on my summer death reading!

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And one of these days I hope to get around to posting more of my own writing on all sorts of topics! I have a large folder full of drafts waiting to be finalised. But the call of my wild garden has been irresistible, and I’ve had so much fun wandering the paths that Roy has cut for me and taking photos of my flowers and other wonders growing in this gorgeous season of warmth and sun and rain.

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Smelling the roses! These ones have a divine, spicy tea scent (photo: Roy Cross).

I hope you have been well and at peace and enjoying every moment that you can get close to nature this summer!

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June Update

I feel bad that I haven’t posted anything but updates lately (I have several posts waiting for revision when we get a rainy day), but I very much enjoyed the wonderful spring instead of spending time with my laptop. I thought another update was in order, however, since corrections are necessary after my consultation in New York.

The spectacular sunrise reflection as seen from my park-side hotel room, thanks to my generous dad. After seeing this I set my alarm for 5 am each morning to treat myself to the dawn views.

I was a little doubtful about the scan report I wrote about last time, since it indicated that my tumours had, contrary to all expectations, pretty much disappeared. Another radiologist has since looked at those scans and seen multiple tumours of various sizes as before, some shrinking a little, some growing a bit. This reading is much more in line with what I was feeling in my body as well as what everyone thought would happen. I’m not sure why the scan was so misread the first time, though I know I was given only two of the three prescribed contrasting drinks before the scan, since the technicians somehow forgot one. In any case, the revised reading makes much more sense. It is also more aligned with the scan I had done last week, which shows similar masses.

I have decided to take a break from chemo with the NY specialist’s advice. Hopefully I will get a couple of months without too much disease progression before having to make more decisions about treatment. I really don’t enjoy time spent thinking, writing, or talking about this disease or how to treat it—nor time in treatment. So now I will go back to spending precious time with my dear loved ones as well as enjoying my garden and taking photos of the flowers. You can see what I’ve been looking at on my instagram page.

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One of the beautiful daisies Cheryl, Roy’s ex, gave me—one of so many kind gifts I have received from her.

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I was so fortunate to feel well enough to enjoy this recent trip to New York, unlike the previous two for medical consultations. This was a real vacation, with lots of walking through Central Park and the art museums and galleries with Roy. Since art and nature are two of my favourite things, I was very happy! The weather was also spectacular, so we enjoyed our porridge (there was a healthful take-out restaurant right on the corner) by the lovely lagoon in the park every morning.

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We also saw Swan Lake from the second row at the Metropolitan Opera House! And some inspiring work at the MoMA! And an exhibition of Jenny Saville’s huge, fleshy paintings! (I once wrote a paper on her for a contemporary art history class, so I was delighted to happen upon this show in Chelsea.) Plus we enjoyed a relaxed Saturday afternoon lying on the lawns of Washington Square Park, where I was so happy to see young people reading books, and a day wandering Brooklyn. So many highlights to this trip!

Passersby and young women reading in Washington Square Park on a sunny Saturday afternoon.

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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.

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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:

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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.

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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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