02 August 2014
A letter from the other side for a woman facing chemotherapy
Dear Friend or friend of a friend,
I remember the day I found I would need chemotherapy. I had slept in a reclining chair, still too sore from the mastectomy to sleep in a bed, and I woke up before dawn to read an email answers to a query I had send out: If there’s no cancer in my lymph nodes, why would my surgeon have said he thought I should probably have chemo? A friend of a friend of a friend oncologist sent me the survival rates for woman my age with a tumor my size and no lymph involvement. Chemo added 12% to the 10 year survival rates. 12% greater chance of cheering at my kids’ graduations, of holding a grandchild, of writing another book. I felt the darkness close around me and I had to get out of the confines of the chair and the bedroom and into the light. There was apparently this big part of me that had thought that the mammograms and ultrasounds and MRIs and biopsies and surgery were the whole journey and now I could just heal and go back to normal. Suddenly it looked to me like I had hardly begun to fight the cancer. I know every woman is different and your chemo experience will be yours, but still, maybe if I can tell you the things I wish I had known when I began, there would be something in it for you. So here goes—ignore everything that isn’t helpful.
I was terrified of chemo. God our images of it are awful, aren’t they? And ironically, most of the images have to do with being so sick, the nausea and vomiting. It seemed to me that this was the symptom they cared most about getting rid of, though, and they were devoted to my not feeling sick in that way. I took the various anti-nausea meds they gave me, but in the smallest doses, and I was never really sick. (One trouble was a side effect of the anti-nausea meds—constipation. After the first round I drank “alpine tea” religiously as soon as I got home from chemo. Three cups a day while I was on the anti-nausea medication. After the first round of learning it the hard way, this was all good.)
I was disconcerted about the ways I couldn’t see out of the chemo period. I can’t remember the last time I had such a short time span of attention. My image was that through diagnosis and surgery, pieces of my life had come apart and were swirling around me, and in chemo all I could see were the white-out conditions from the swirl. I kept thinking my life was like a snow globe, recently shaken so hard that I couldn’t see the scene inside anymore. It took me a while to relax into the grey of it and not panic in the fog. I came to rest more easily with the knowledge that I would be able to see into the next chapter once it was available to me, and that right now I could cocoon up and just try to enjoy the unprecedented focus on today such limited views provide. I was struck again and again at how much pain I caused myself just wanting things to be different. Relaxing into the life I was actually living was the finest gift I could give myself.
And speaking of gifts, there were a couple that made the biggest difference. I am a lover of symbolism and metaphor, and it has been important throughout this whole cancer experience to gather the best symbols and metaphors around me. I was grateful for the soothing hand cream people sent (how did you know my hands would be so dry?) and the essential oils. And all the flowers to bring beauty in the grey swirl. But the most amazing gift I was given was a box of envelopes—a poem for each day, numbered 1-90. It was a ritual that each morning that first thing I’d put yesterday’s poem back in its envelope, send it to the back of the box, and open my new poem. I think marking the passing days is really important. In the Maldives, I collected 84 beautiful shells to give to a friend just starting her 4 rounds of chemo. If you don’t have Mark and his amazing gift, perhaps you could go to the store and buy 84 beautiful marbles (or stones or shells) and keep them in a jar, and each day move one of the marbles to a second jar. I think we should each have something beautiful to hold and notice each morning, and then give up the beauty for that day and move into the beauty for the next day. Even in chemo, every day holds the possibility of loveliness.
The second gift was one I gave to myself: a necklace that I decided had magical powers, in part because it so reminded me of the meditation CDs I had listened to that were helping to transform chemo from a poison to a magical healing liquid (this is a Health Journeys meditation and it helped me a lot). I decided to buy a representation of that idea, and I kept that with me at all times. Funny the symbols that help. If I had it to do again, I’d believe that my necklace was magical even sooner than I came to believe it.
I also came to believe my yoga was magical. Atmabhava, my yoga teacher, came to my house once or twice each week, and his gentle presence and the constancy of the practice always made me feel better, even on the days when I felt at the beginning I probably wasn’t up to it. And my walks in the hills with Melissa—surely the company of a dear friend and the feel of the wind on your face—surely that is magical. I believe we should gather magic around us and let it heal those places of us that are battered well beyond the effects of the chemicals in our veins. Over time I came to decide that a little magical thinking—along with modern medical advances—was a gift to myself. I only believed in good magic, good signs, by the way. I left the curses and signs of doom to folks who have a surfeit of good news in their lives.
Hair. Wow this was a hard one for me. It’s funny, I have never been particularly interested in the way I look, have never been a great beauty whose power comes from her looks. But losing my hair! I felt terrible and then felt shallow about feeling terrible! I got a really short cut just as I went into chemo—so that I could see what I would look like once I had short hair on the other side. That was a huge help. I guess the other thing to say is just that I needed to be gentle with me and to get others to be gentle with me too. I needed some time to grieve the way I used to look—and all that symbolized for me (a healthy person who got to choose what to do with her hair and body). And I needed to come to terms with the naked features I had now. (By the way, if there’s anyone in your life who can’t stand to see you bald, that’s their problem and not yours—I had to be really careful around folks like that.) And now, at just about two months out of chemo, my new short hair is downy and soft, and I think I’ve left my wigs behind except for costume parties. This isn’t a hair style I’ve chosen, but I am grateful each day for the silky and growing hair, the smallest bit of which makes me feel more healthy again. It would have helped me to know how fast I could get used to going out with radically short hair (just two months of growth). And it would have helped to be able to believe—really believe—that there is a kind of open, accessible, magnificence to a bald face (I am grateful to each person who told me that, again and again—last weekend it stuck in a new way). I couldn’t hold that before, but I am growing to hold it now, and I will hold it for you and for the other woman who feel naked and ugly when they are hairless. I wish I had been able to be more graceful with the baldness and with the looks that baldness has gotten me. For this part, it is just about noticing again which things I can move beyond and which things trip me up. There is no shortage of developmental opportunities during chemo.
My skin broke out after the first round (typical, I’m told). And then it became luminous. I have never had more beautiful skin. Leigh (the cancer and beauty woman) said it was the most aggressive chemical peel on the market! I got a horrible rash after the third round, but I read some things about needing to scrub the skin on your body as well as care for the skin on your face, so I made a scrub of coconut oil and caster sugar and scrubbed each day. I should have done this earlier—and I’ve kept dong it after chemo because it’s so delightful. I was rash free (and smelled like a tropical holiday) for the rest of chemo. (And steroids took the rash away as soon as I started using them—it was ignorance that kept me in itchy misery for 48 hours before I started the drugs.) As my hair comes back, my skin also goes back to its pre-chemo state and becomes ordinary. I look back on my luminous skin as one of the only beauty benefits of chemo (that and silky hairless skin—I have never ever been so soft).
In the weeks before chemo began, I had two meetings—one with the oncologist, and one with the home-visit nurse—about the various chemo symptoms. They flipped through the pages of side effects and explained what I needed to do about it. Rinse your mouth with salt water to prevent mouth sores. Take your temperature every day to see whether you’d get a lifethreateninginfection (that always showed up as one word for me). Wash your hands. Be careful not to get any bodily fluids on anything for the first 3 days because you are literally poisonous and you’ll have to wrap that sheet or bowl or carpet up and throw it away. I wanted to run from the room, screaming. I just knew that I was not strong enough to handle all that. Still weak from the surgery and my life in disarray around me, I knew I would not be healed enough to face all of those miseries with anything like grace. I became the chant of the little engine that couldn’t “I know I can’t I know I can’t I know I can’t.” Fast forward my little engine to the last chemo round (oh the last round of chemo was by far the easiest for me, though I didn’t see that coming). I saw with the nurse and went through all the side effects again, ticking them off like cities on a ten-day European coach tour. I had had them all (except the lifethreateninginfection) and had taken it all in stride. We are stronger than we will ever know, stronger than chemo, stronger than cancer, stronger even than the terror of death. We will face it all because it will come to us to be faced, and then the wind will blow the storm away, and the waves will wash over the sand and your second round and your third round and your fourth (and urgh, your fifth and sixth) will pass and you will be new. And you will have had the strength to face it because women have had the strength to face horrors far beyond chemo for centuries and their DNA spirals through and around us like a golden mesh, ensuring we have that glittery flexible strength that we need to get through.
When I sat down with a friend who was just out of chemo as I was just going in, she tried to reassure me that it wasn’t as bad as she had expected. (just as here I am trying to reassure you that it wasn’t as bad as I expected.) She pointed to a patch on her arm that was swollen and still not quite right (a patch that I now have as well—but it gets better each day and is nearly gone now). And even that freaked me out. I wanted everything to go back to the way it was before. I wanted chemo and cancer and my scars to all disappear instantly when I was through to the other side. I may have come the farthest on this issue. I no longer want my life or my body to look just the way it did before. I no longer look at my scars with horror (I had both breasts operated on because it was a full mastectomy and reconstruction and they needed to mess with the right breast to get it to match the left). I have come to much greater peace with my nearly naked head, even noticing now the way my features sort of blur and disappear when I put on my wigs. I am fond of the smooth firm globe of my prosthetic breast and the almost bionic-woman quality I sometimes feel when I touch my skin and feel silicone just underneath the flesh.
I don’t want to go back to who I was before. You know as I do that there is loss aplenty on this path. But it’s not straight loss—it’s like a barter. You barter away your old life, your old sense of health and longevity, your old hair. And in return you get a new self, a richer love of each day, a more compassionate and centered philosophy. It is not a trade I ever ever ever would have signed up for. But now that I’ve got it, I wouldn’t trade it away. You are just now entering the storm of it. The wind may tear at you and the sand sting. But at the other end, each day will glisten and shine in a way that is just not possible without this affront. I was saying to a client the other day that it’s nearly worth going through chemo to know the gratitude of being on the other side.
I’m only two months out. I still can’t decide whether to use shampoo or face soap on my fuzzy head. My scars are still angry red (but fading, fading). I have no idea how long this afterglow lasts and whether I’ll find myself returning more to my old self in time. But I know that chemo has helped shape who I am today in rich ways, and I know that I am stronger now than I ever thought I was. I know that I actually notice and delight in each day I don’t have a headache. I sometimes catch myself not feeling tired and I feel a wellspring of delight and laughter from that place. I loved food before chemo, but a few months without my taste buds left me in a carnival of delights at every meal now that they’re back. Coffee has never tasted better; the mix of salty and sweet in my healthy almond shortbread makes me moan with pleasure, and I am often now silent as I eat a really good meal because I am overcome by how glorious it is to taste it. These are gifts I never saw coming, and for me they have not faded over the last two months—my delight grows with my hair. I couldn’t see out of chemo as I went in, but I can tell you now that out of chemo is spectacular.
I wish you godspeed as you begin this trip through the storm. There are endless stories of male heroes who quest to fight dragons and sea monsters before they can come home again. This is our story, and these are our dragons. But like them, we are questing, and like them, we’ll return home to our halls and people will gather around and hear us sing out about our adventures. I can’t wait to hear as you sing out about yours. May you learn in the quiet grey stillness all that you need to bring you to a sparkling and joyful life on the other side.
With love and hope,
(Here was one of my very favourite poems from Mark's poetry box)
Doctor, you say there are no haloes
around the streetlights in Paris
and what I see is an aberration
caused by old age, an affliction.
I tell you it has taken me all my life
to arrive at the vision of gas lamps as angels,
to soften and blur and finally banish
the edges you regret I don’t see,
to learn that the line I called the horizon
does not exist and sky and water,
so long apart, are the same state of being.
Fifty-four years before I could see
Rouen cathedral is built
of parallel shafts of sun,
and now you want to restore
my youthful errors: fixed
notions of top and bottom,
the illusion of three-dimensional space,
from the bridge it covers.
What can I say to convince you
the Houses of Parliament dissolve
night after night to become
the fluid dream of the Thames?
I will not return to a universe
of objects that don’t know each other,
as if islands were not the lost children
of one great continent. The world
is flux, and light becomes what it touches,
becomes water, lilies on water,
above and below water,
becomes lilac and mauve and yellow
and white and cerulean lamps,
small fists passing sunlight
so quickly to one another
that it would take long, streaming hair
inside my brush to catch it.
To paint the speed of light!
Our weighted shapes, these verticals,
burn to mix with air
and change our bones, skin, clothes
to gases. Doctor,
if only you could see
how heaven pulls earth into its arms
and how infinitely the heart expands
to claim this world, blue vapor without end.