Enough

Talking to a fellow survivor today
about how I worked through the treatment,
kept my schedule packed. Determined to be
the best cancer patient ever. As if that were
possible, or came with a prize. Probably should
have taken more days off, but at least
it was distracting, juggling classes and kids
and chemo. No time to wallow, running
from surgery to radiation to hosting the entire
extended family for Christmas Day. Kept
my spirits up, but sometimes I fell down.

Sometimes I had to stop. Let my body
become an indentation on the couch, wait
for the strength to come back to arms
and legs. I ran and ran and ran until
I collapsed. I am not a runner but cancer
was a marathon. And the funny thing
is that treatment ended a full year ago,
and they’ve let me go back to yearly
mammograms, but I just kept running.
Resting only when I had no choice.

Breathe. This is my job now. Slow down,
enjoy the children, the partners, the body
that is creaking its way into middle-age, but
basically holds up. No need for distraction tv —
there’s nothing too frightening to look at now.
Read the difficult books. Walk in the woods
without even a camera. Write the novel.

Give over the paralysis of the last years,
the fear that this draft can’t possibly be
good enough. Write it badly. Be inefficient.
Trust that there will be time to fix it.

If there isn’t, whatever is done will be enough.

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Cancer log 195: How Cancer Made Me Lose All My Friends

Not really. But kind of? Almost?

I was diagnosed in February 2015, and treatment ended in October 2016. When I was diagnosed, people rallied round — family, close friends, casual friends and acquaintances, strangers. I live a very public life, and one consequence was that I was lucky enough to have a ton of support, which was, frankly, priceless. Cancer would’ve been a much more miserable experience without it.

But I’ve slowly figured out something about myself in the last decades. (Maybe if I were in regular therapy I would have figured it out sooner and saved myself some grief?) When I’m having a really hard time, for whatever reason, I retreat. I turtle. I pull back from as much of the world as possible, go pretty silent about anything important, and hide until I feel better. Which can be months. And it’s not obvious to me or to others, because I have little trouble maintaining superficial connections — posting blog entries or chatting on FB. The volume might go down a bit from normal, but the normal volume is so high that people don’t notice that.

So the weird effect of it is that I’m miserable, I’m dealing with it by retreating to heal and reset, but my close friends and family don’t feel that — what they feel is that I’ve withdrawn, intensely, from them. And if they know what’s going on with me, that’s hard, because they want to be helpful. And sometimes they don’t know what’s going on with me, and that’s harder, because it probably seems inexplicable, and they often take it personally. From their point of view, I’ve pulled back specifically from them — gone silent, stopped taking phone calls, etc. It’s not so visible that I’ve pulled back from the world.

It happened a few times before cancer. The first time I can pinpoint was in a poly situation, when I was super-stressed by the relationship dynamics, and I pulled back from both of them. As she put it at the time, ‘it was as if the sun had gone out.’ The romantic relationships didn’t survive, but I’m still friends with her, thankfully. Time helps. I think another friendship ended because Kevin and I had broken up, I was shattered, but I completely failed to articulate that, and a friend thought it was a problem with how I felt about her. I’m still sad about that one, though we’ve come back to friendly, at least.

And all my close friends and family held on through the first year of cancer, but by the end of that year, cracks were starting to show. People started expressing to me that they felt unloved. Sometimes pretty forcefully, after a long time holding it in and trying to endure and wait for things to get better on their own because, y’know, cancer. When you don’t return phone calls for months on end, it hurts people.

I think social media really masked that from my end, too, because I felt like I was being super-social, spending time with all these people. The campaigning aggravated that too — I met *so* many people, cool and interesting and friendly people whom I’d like to get to know better, that my friendship buffer kind of filled up? And I somehow didn’t notice how little I was engaging with old friends and family, some of whom were going through their own hard things.

So I’m in this period right now when I’m trying to slow the hell down, and repair some relationships that were pushed to the breaking point. Stupid cancer. I can blame cancer for that, right? At least a little? It’s much easier than admitting to character flaws…

I think the relationships are mostly going to be all right, although I should still call people more often, and visit if I can. The attenuated ‘presence’ of social media has its own value, but it’s just not the same.

Two other, only sort-of related thoughts. I was noticing this past weekend (high-stress weekend) that I desperately wanted a bath. I am not actually a bath person, but when things are hard in my life, suddenly I become one — all through both pregnancies and through cancer, I was taking frequent baths. I’ve started to think of it like the canary in the coal mine — when I start taking a lot of baths, something is probably wrong, and I should slow down and try to address it.

Similarly, when I’m happy, I sing. I sing all the time, in the car, doing chores, whatever. I have a vast repertoire of show tunes, etc. When I stop singing, it’s a good sign that something is wrong, and there’s been very little singing in my life, the last three years. I’m still trying to reset after cancer, I think, come back to myself. Getting there.

Self-knowledge is hard. But valuable. Communication skills, ditto.

“Make new friends, but keep the old;
The one is silver, the other gold.”

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Wednesday Journal article on the Breast Cancer exhibit

“One breast cancer survivor has a cast in the show and also made her own artistic contribution. Mary Anne Mohanraj is an English professor at the University of Illinois Chicago, an author and a new Oak Park Public Library trustee. In February 2015, she was diagnosed by mammogram at age 43 with Stage 2 breast cancer. Although her prognosis was good, she underwent five months of chemotherapy, a lumpectomy, radiation and an additional year of follow-up infusions. During treatment, she missed little work, but ongoing fatigue from treatment negatively affected her early elementary school-age children and her writing.

“If you focus on what you lost, it’s not so helpful,” she said. “I do better when I’m communicating about it, especially to people who are going through it.”

Pressed leaves and flowers, plus lines of her poetry (“Thunderstorms, yes, the drops hammer against the windshield …”) peek through on a blue background covering her cast.

“I wrote poems during treatment, and gardening was a solace,” Mohanraj continued. “The exhibit is important because it destigmatizes something that shouldn’t have stigma — women’s health.””

Read more here.

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Cancer log 194: Hair Redux

It’s not really about the hair, even if reading people’s (positive) comments on my hair did end up making me cry. The hair looks fine, but it’s just not what it was before cancer. It is short now *because* of cancer, not because I chose to have it short. It’s the visible marker of everything that was lost with diagnosis.

The chunk of breast that was scooped away, the nipple that has gone entirely numb. The pain and exhaustion of chemo, surgery, radiation. The years of time that were lost to treatment (time from family, time from writing). The peace of mind and assumption of health (now every doctor’s appointment comes with added weight of anxiety). The reconstructive surgeries that are still to come.

Most days, I can count my abundance of blessings and be happy. I forget about cancer entirely for weeks on end, and feel entirely healthy. But there’s a river of loss and anger running underneath.

Not sure if that’s ever going away entirely. We’ll see.

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Cancer log 193: Art.

When I was invited to participate in this breast cancer gallery exhibition, I wasn’t sure what kind of imagery I’d end up with for the finished piece. I felt a faint pressure to keep the work positive, uplifting, and that made me cranky, because my experience of breast cancer had plenty of darkness to it. I was a little tempted to slather black paint over the whole thing and have done with it.
 
But that’s not really me. I had one idea that I thought would work well, to build a harness to surround the torso, sort of a warrior woman kind of thing, calling back to Wonder Woman and Amazon mythology. But that wasn’t really me either — I didn’t experience cancer as a fight, a battle, the way it’s so often depicted.
 
In the end, I thought about what sustained me, through that difficult year, and I came up with three things: my garden, my writing, and my friends and family. They’re all represented here. I started with a blue background, the color of a sunny sky on a beautiful day. I added marbleized gold and gold glitter — that’s my friends (both online and off, and even a few total strangers) and family, who gave so much support in so many different ways.
Then I added a poem, “Tornado,” that I wrote during the year of treatment, a difficult poem, but a hopeful one too. I gathered flowers and leaves from my garden and the grocery store and pressed them, and then placed them on the piece. The front and back were approached differently — I started with bougainvillea petals on the left breast, where the cancer had been, because bougainvillea will always mean Sri Lanka to me, and that’s a piece of my heart. They scatter outward from there, pansies and hydrangea and mums and even a poisonous oleander blossom, as if picked up and tossed about in the storm.
On the back, I composed a little differently — a crown of hydrangea blooms above what looks a little like a face, or a mask. Sometimes, cancer felt like that — as if I were overexposed, with all the world knowing what was happening to me, and all I wanted was to disappear, to hide. And then roses, for the people who live in my heart, with a scattering of petals and greenery beneath. Green for life, and healthy growth emerging.
 
I didn’t have to make something pretty, but in the end, I’m glad I did. That’s important to me, and is what I’m often trying to do as a writer — to take pain and try to make beauty from it, when I can.
*****
 
Tornado
 
We knew it would rain today, but
driving to the first chemo appointment,
the radio upgrades the warnings –
thunderstorms, yes, the drops hammer
against the windshield. But hail too,
strong winds, the chance of a tornado.
 
The garden is waking slowly, early snowdrops
giving way to scilla and chiondoxa,
tiny and tough. With rising warmth, bluebells
and crocus emerge, daffodils open. Cool whites
and blues are joined by warmer tones; pink
hyacinths release their scent –
washed away in today’s storms.
 
Some flowers may survive. Others will be beaten
down, petals tattered, leaves and stems dragging
in the mud. Tomorrow I will walk my garden
and count the toll of devastation, mourn each
brave blossom – my hands dug them in,
planted them deep, for this?
 
But roots survive, the bulbs beneath the soil.
Most daffodils still hold themselves tight-budded,
will open when the sun returns; the tulips
will spring forth, straight and proud and tall.
 
Into every life a little rain must fall. Last night,
we read over the lists of symptoms and side effects.
No toxins in my soil, but we still pour them
into my body, to fight this strange unwanted growth.
 
At garden club, I ask, despairing, what to do
about the burdock – I dig and dig, but it keeps
coming back, the bastard. A long taproot, tenacious.
 
She says even eco-conscious sorts
may resort to poison in the end. But rather
than pouring it over the plant, the soil,
they paint it on, delicately, with a paintbrush.
 
The new drugs work like a paintbrush – focused,
targeted. We hope their poisonous effects
will be lessened and contained. There will still,
undoubtedly, be some damage.
 
We ask the universe for a favor today.
Let the worst of the storms pass us by,
let the tornado touch down, lightly, and rise again.
Let the winds dissipate
while there are still flowers on the bud.
Let the sun return.
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Claudette


First dahlia of the season, a little late, because I was busier than usual in May, and so I didn’t get them into the ground until June. That’s all right, but it makes me a little sad to see how small the plant is. I started planting dahlias about six years ago, putting them in the ground in spring, lifting them out in fall, right after first frost. Storing the tubers carefully in a cool, dry place, to replant again the next spring. Each year, the tubers got bigger, and the plants put out more stalks, more flowers. After three years, I was able to gather great big bouquets for the house, and still have plenty of flowers left on the plant for the neighbors to enjoy.

But in 2015, chemo was followed by surgery was followed by radiation, and I was too harried and exhausted to keep track of everything — I could have gotten help, but I completely forgot to ask someone to dig out my dahlias at the right time. So they all died, rotting in the ground. I was so angry with myself when it happened.

Yet here I am, healthy again. In spring, I bought some dahlias again, put them in the ground. This one is Claudette, a variety I particularly liked, that I decided to repeat; the others are new. Claudette is lovely, even if she is a little small and spindly this year. She’ll grow. Sometimes, everything burns down, and you just have to start over. It’s okay.

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Perennial and Feast

I’ve printed out and proofed the layout of Perennial (thanks to Lethe Press and Matt at Inkspiral Design for the layout work!). It’s a little under 100 pages, all laid out, which seems short, but hopefully not too short for a charming little gift book. It’s kind of thrilling seeing my illustrations in there — I’m still such a novice with drawing, but I am starting to actually like my own style. It’s odd to think of myself as sort of an artist. Odd, but nice. And for this book in particular, very personal drawings feel right.

 

Moving on to the cookbook, I find that there is a particular thrill to compiling the Scrivener file to .docx. I still write all my fiction in Word, but for the cookbook, where I was moving things around constantly, Scrivener was perfect.

I’m going to print it out now, which feels a little wasteful of paper, but I think I have to accept that every once in a while, writers need to use paper. For this final editing pass, I just find it easier to see everything in print.

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Cancer log 192: Two interpretations

Today’s mammogram came back benign.  There’s been some pushback recently in the medical community against early mammograms, with a concern that they’re picking up very-slow-moving cancers that under normal circumstances might not develop into anything problematic until the person is fifty years older — by which point, they might easily have died from something else.
 
I was talking to Kevin last night, and he’s sort of settled into thinking that might well be what happened with me — they caught something that might never have actually bothered me if we hadn’t done mammograms, maybe we went through that whole terrible year of treatment for nothing, that almost certainly, none of the follow-up mammograms will find anything, and they’re probably a waste of time (but one he still thinks I should go through with, just in case).
 
I don’t feel that way. Part of it is that there were various aspects of my tumor that didn’t seem so slow-growing — on surgery, it turned out to be bigger than they thought it was from scans, etc. But mostly, I’m just not that optimistic, I guess. I’m in the better safe than sorry camp, and I’m glad we did the treatment, however grueling it was.
 
I also have no confidence that the cancer won’t return. Pretty much every time I go in for a mammogram now, I feel like it’s 50-50 what they’ll find. That may not be accurate, but it’s my emotional reality, and shapes my reaction not just to mammogram day, but to my plans for the future. Every time they say ‘benign,’ I feel like, ‘okay, that’s another six more months I can plan on being around for.’ I do make longer term plans, of course, but they’re strongly influenced by my heightened awareness of mortality.
 
The clock is constantly ticking in the back of my head now, which is a good thing in some ways, prodding me to make the most of my time. But I’ve been feeling some increased anxiety as well — I’m not normally an anxious person, but it fades in and out now. If it’s still around at my next internal medicine doctor check-up in a few months, I might ask her to set me up with a therapist who can do talk therapy and/or prescribe me something for it, because it’s distracting and unpleasant.
 
For now — more time outside, more gardening and knitting, trying to keep the to-do list from getting too long and the e-mail inbox from getting too full (both of those are anxiety-provoking, in a way that quickly gets paralyzing, which is counter-productive.) Maybe book a massage once in a while. Read and write.
 
Writing is my greatest therapy, always, so thank you all for listening.
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Cancer log 191: Mammogram Day

Plan for today: scan some materials in for my students to read (excerpt from Russ’s _How to Suppress Women’s Writing_) and send it to them, then head to Loyola for six-month mammogram. Try not to stress. It will probably be fine. Take laptop with me, spend any free time between 9 and 12 on e-mail. Come back, meet Chris and go over what he’s doing for me today (he’ll start by watering the lawn, finishing up the party dishes, and taking out any remaining party trash from yesterday’s union BBQ, but after that, I’m hoping to get him started on cataloguing how many extra copies of my books I have, and then setting up a quick clearance sale on my site. I’ll let y’all know. Also starting the Patreon daily posting, woot.).

From noon to 3, try to write. I’ve gotten comments back from several people on stories (THANK YOU!), and I think I know how to fix “Skin Deep” now, or at least know more clearly what was wrong with it. (Essentially, I rushed the character development for one character, so her motivations for a fairly dramatic action felt unclear and implausible. The fix is probably going to involve going in and writing another scene or two from her past, so you can see why she did what she did.) Russ (agent) also read the first four chapters of the novel that I gave him and sent me comments late last night, so I’m itching to get back to that.

At 3, I meet with a representative of the League of Women Voters to tell them about what’s been going on with the library board, the last three months. They usually send an observer to the various boards, but they didn’t have anyone available to cover library (local folks, especially younger folks, the League of Women Voters could really use a little of your time and energy!), so they’re sending someone to get a report from me. (Matt Fruth, if there’s anything in particular you want me to pass along, please feel free to send it.)

I have time tomorrow morning to finish grading and prep before class, so then I relax for a bit, hang out with the kids, maybe knit or putter in the garden. There’s a local Indivisible meeting at 6:30 at Edwardo’s, and I’ve been meaning to check them out, so if I have the energy, I’ll go to that. But mammogram day means all bets are off, even if the news is good, as we expect it to be — it’s just a stressful day. If I want to tuck myself in bed this evening and eat leftover strawberry-topped cheesecake from the BBQ, that is totally okay.

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