Cancer log 197: Out of surgery, home safe. Groggy. Ow.

I basically came home and immediately fell asleep. Kev went and picked up my prescriptions; he’ll tell me when I can have pain meds again. In my experience, I heal pretty quickly, so expect to be switched to just Advil by Monday. But for now, I’ll take the nice fancy meds, and drink lots of water. Not feeling up to eating yet, but I’ll try to eat at least one meal today.

Note for nurses — telling a patient repeatedly, “Don’t cry, don’t cry, there’s no need to cry” is SUPER unhelpful and kind of infuriating. Maybe she meant well, but AIGH.

I’m pretty stoic; if I’m crying in front of a stranger, there’s a problem. If you can address the problem and make it better, do that. If you can’t do anything, bring tissues.

I’m actually kind of angry too — I was cold and in pain, a combination I have a lot of trouble being tough through, and it felt like an eternity before she actually gave me the better warming blanket and more pain meds, even though I warned them beforehand that I react this way to the sedative. Same nurse I had last time, apparently. If I do this again, I’m going to request a different nurse.

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Cancer log 196: Reconstruction procedure #3.

I have surgery tomorrow (another reconstruction procedure, fat transfer from lower belly to breast, should be routine, not a big deal), and I am, per usual, stupidly anxious about it.

It’s weird, the bits that bug you. I heartily dislike the little IV needle they put in the back of your hand (although the actual IV fluids are great when you’re feeling yucky), which I have now had inserted many times, given pregnancies and c-sections and contrast for cancer-related MRIs etc. and so on.

And I am apparently really slow coming out from under anesthesia — I wake up super-cold and disoriented and sometimes nauseated, and it takes me a long time to get back to normal, long enough that the nurses start to get impatient at every hospital I’ve been at, and so now I kind of dread their irritation even more than how yucky I know I’ll feel.

Plus of course, there’s the fact that I opted into this. I could have just skipped it, stopped and said I was done with attempts at reconstruction, at aiming for symmetry, etc. It makes me feel dumb, that I’m putting myself through this, that I’m making Kevin wake up and go in with me at 7:45 a.m. tomorrow (I have to have someone with me, according to their requirements, or I’d probably just cab in and have him there for when I finish…), that for the next few days, I’m going to be moving slowly and not able to do much around the house.

I really wanted the house done with Christmas decorations before the surgery, so I wouldn’t be lying in bed fretting about lights needing to get up, etc., and so we did a big push and we did manage to finish today; it’s all pretty decked out.

We even trimmed the tree this evening, which Anand really wanted to do, because he says there hasn’t been enough special holiday stuff yet. So Anand had hot chocolate (which Kavi doesn’t like, oddly enough), and we cut out and baked sugar cookies in holiday shapes (mostly Kavi, since Anand quickly got bored with that part), and the kids decorated a few of them. I’d show you pictures, but I forgot to take them. They’re cute as heck. I’ve stored the rest of the baked cookies to ice next week, in preparation for our holiday party.

But even though Kevin and Kavi made the sugar cookie dough and Kev did a lot of the cutting and decorating too, so it really wasn’t that much work, I was really tired and stressed about tomorrow and I can’t say that I enjoyed any of it as much as I normally would. I was glad to spend time with the family, though. I think the kids had fun. Making happy memories, hopefully. I think I mostly managed to keep the mommy-crankiness to myself, which is something.

Heh. I didn’t really come here planning to say any of that — what I was going to say was that I appreciated having the Crisis on Earth-X superhero 4-episode crossover to distract me today, in between churning through my e-mail backlog and putting up the last decorations. It was a really fun series, with much punching of Nazis and a fabulously satisfying ending, and just what I needed to take my mind off things for a bit. Yay, superheroes. (Speaking of superheroes, the next Wild Cards book, Mississippi Roll, will be coming out December 5th in the US and Australia, a little later in the UK. I’m not in that one, but I’ll be in the one after, Low Chicago, with a story that is one of the best things I’ve written, I think.)

I should go to bed. But I can’t eat anything after midnight, so while I’m resisting the urge to stuff my face in response to that injunction, maybe I will go get myself a little spicy hot chocolate before bed. A little holiday spirit. Ho ho ho.

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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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