Vigor

Posted on March 25, 2020 by susanmsink@gmail.com
Photo by Joe Calomeni from Pexels

Monday was a lovely day. It got up to 47 degrees where I live, and no wind, after three days of cold, raw, windy weather. I went for a walk, and seeing that the park where I usually walk a loop was crowded, I stuck to the road. The road, which I had mostly to myself, runs past several athletic fields belonging to the College of Saint Benedict, including a beautiful new soccer pitch with a gorgeous green rubber field of grass.

Eight young men, college students who have stayed in town in their off-campus housing, were playing touch football. My first reaction was alarm, especially seeing the two not wearing shirts and how closely they were guarding each other, and running after one another, putting bare hands on a bare back.

But the judgment in my initial reaction quickly faded, and all I wanted to do was watch them. As I walked closer, I saw two bikes, and two children sitting at a proper distance from each other watching the game. I stayed on the path and walked up and around, viewing two young women playing catch with a softball, and feeling sad that these beautiful new facilities, with seats for fans, a concession stand, and a batting cage, would not be used this spring. Then I walked back and stopped to watch the young men, from a distance.

How beautiful they were! There were no dropped passes, and they blocked and ran and reset for the next play effortlessly. The motion itself was beautiful, a kind of dance. They didn’t seem overly competitive, just taking turns throwing, catching, running– simple elements of a game we took for granted just a few weeks ago.

It has not been difficult for me to shelter in place, self-isolated for almost three weeks now. But looking at these men, I saw how difficult it must be for them and others who are feeling their vigor and health constrained. Here they are, the invincibles, young people who have been told (somewhat erroneously) their cases will be mild, so they don’t need to worry. Young people calling foul that their lives have been so cruelly interrupted. And it is cruel, missing a spring of a year in college, especially for the seniors but really for everyone.

Here the earth is struggling to come out of hibernation. Today is a day of cold rain on brown ground, trying to melt the last piles of snow on the north side of houses. Ice and mud on the forest paths that turned us back from a walk on Sunday. Ponds with their sick gray skins of ice. Walks are still a challenge most days, as the temperatures rise hopefully then crash back to winter.

And of course my “view” online is mostly dire– what is closed and what is sold out and what is available for curbside pick-up. The fear of not being prepared for what is to come– and watching for what is to come — and the fear of what it will be like when it fully arrives. Three notifications of people I know with the virus, one living a few blocks from me and two in Chicago, one posting from the hospital. It has begun– has it begun?

People are asking others to post something they are grateful for, something beautiful– and they mean in nature or at home. But the most beautiful thing I saw this week, I have to say, was his display of vigor. Definitely a bad idea, and I wish everyone would stay home and protect everyone, including particularly healthcare workers. But I have to admit, it is tough for the vigorous. And it is tough for America, too. Because who are we if not the vigorous, if not the invincible?

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Advice for Self-Isolating

Posted on March 16, 2020 by susanmsink@gmail.com
Quarry Park, Waite Park, Minnesota

With the US in an ever-expanding state of quarantine, I’m interested to see how people are setting up, settling in, and handling being at home for long periods of time. And I have to tell you, as someone who has been about this for quite a while now, I see people making some rookie mistakes.

I’ve been in a state of rolling quarantines for the past four years, ever since my diagnosis and treatment for cancer began. There are times that the chemo makes me just plain sick. There are other times when I am immunocompromised, my white blood cell counts so low that eating out and going to the movie theater are not recommended. for the past three years, I’ve worked from home. I’m pretty much a professional at hunkering down. And for those of you just entering this surreal world, I have three pieces of advice.

One

First, no television during the day. In my illness, people have constantly recommended things to binge watch from streaming services. Now those recommendations are all over social media, as people seem to be settling in to catch up on their binge-watching. That’s not a good idea. Unless you normally watch television during the day, spending hours in front of the television can be really depressing. I mean, I love movies and have a subscription to the Criterion Channel. I could do an advanced seminar on film and spend days going down the many rabbit holes there. But I know better. Watching movies is for the evening, when one is too tired to do anything else and in need of some cultural stimulation. For those of you who are used to going out to work, and now are home, this is not a series of sick days. You are not sick. No lying around watching television all day.

Two

Set realistic expectations. For example, I have several times over these years committed to becoming a better housekeeper. Here I am, with time and space to clean. I can take on a different task or different room each day. There is no good excuse for this house not being spic and span. Except that I hate housecleaning, really and truly. I am here to tell you that there is no quicker way to turn your house into a prison than to determine to do something you are definitely not going to do and then beating yourself up about it. I will do what I can. I will try not to feel too guilty about what I don’t do. I have other strengths. I love to cook.

Three

This is a variation on number two. The other thing I’ve done many times is commit to a routine. I will get up early and take a shower, be ready to go in my chair, dressed and breakfasted, by 9 a.m. For a number of reasons, that doesn’t happen. First, I’ve shifted to only showering every other day, mostly because my skin is impacted by the current chemo drug and very sensitive. Also, I don’t have to. And I’ve found I like to sit in my chair with a cup of coffee reading and writing and editing until almost noon. That’s OK.

A long time ago, a friend introduced me to the concept of “pajama day.” She was a big proponent and practitioner. There are rules for pajama day, namely: take a bath and put on fresh, clean pajamas. Do whatever you want, but preferably watch movies or read books, and drink tea. Have lots of snacks available. Take a nap.

Pajama Day is a very specific kind of mental health day. People, this is not pajama week. If you take a shower or bath, put on clothes. Even if not, put on clothes, though they don’t have to be nice– you’re not going anywhere. I personally invested recently in 4 pair of deluxe pajama pants in bright colors, two with pockets, that I can wear around the house. I wear them to clean, to plant, to cook and bake, to read, to paint, to write. They are basically indoor pants, not an invitation to lie around eating bon bons.

The fact is, this pandemic time is likely to be a more socially connected time for me than others. For example, my writing group, which I usually do not feel well enough to travel to the Twin Cities for, is going to meet via zoom call. Other groups are organizing “check-ins,” including my office, where our weekly communications zoom call is likely to be attended by more people as we feel the need for interaction. The quality, and level, of social media interaction suggests people want to use those tools to fight isolation. Welcome.

I have one more piece of advice, this time positive. Get outside. Here in Minnesota it is still very cold. That just means we need to bundle up when we go outside walking. Social distance, yes, but don’t be afraid to go outside. Breathe. Walk. Ride your bike. Fly a kite. Blow bubbles. Garden.

You know all those post-apocalyptic films where people are just inside in cubicles (when they’re not flying around in their cars through urban tunnel systems trying to avoid robot armed forces)? I always wondered what caused that transition. A series of deadly pandemics working their way through the world’s population could definitely be one factor. Let’s not get too comfortable with life via zoom calls and Facebook. Let’s keep going outside, and cultivate the outside world with the turning of the seasons. This will be over, though it will probably take longer than a few weeks. We will learn how to do it. Let’s have a good summer.

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Houston, We had a problem

Posted on October 17, 2019 by susanmsink@gmail.com

Hi WordPress blog fans! Whew. The blog has been down, I see, since about June 14.

That’s interesting timing, as my last treatment of Chemo Round 2 was on June 4. I was too overwhelmed to do trouble shooting (sadly, as it took all of 15 minutes with my webhost this morning to get back up and running).

Then I went to Alaska.

Then I went to Chicago to spend time with my parents and this kid.

All summer I swam at two favorite places, Quarry Park and Avon Beach. Swimming was the best, helping my weak shoulder heal, restorative, just lovely. Quarry Park has a long hiking path before the rock pool, and Avon Beach has grass and shade for reading.

Then, well, hmmm. In August I got a second 3-month reprieve, meaning no treatment until at least December. That was awesome news, although I kind of struggled with it. It seemed strange to struggle with good news, but I had prepared myself for bad news. I had prepared myself for a fall of treatment, and was thinking about my options. What would I want to do when my oncologist told me the break was over, the nodules were growing, the fluid was back, it was time to act. Before the scan, I had eaten my favorite foods.

My new discovery– Watermelon radishes. But if I had photos of the out-of-chemo favorite foods, they would be sushi, scallops, lamb chops, and chocolate ice cream.

Then it turned out the pains and tiredness I was feeling were phantom, or PTSD, or scanxiety, or some combination, and that everything was stable. Everything was good. We’d check back in 3 months, after Thanksgiving…

Hmmm. What do I do now? Well, I have this personality glitch as a lifelong overachiever that said: Another month of BIG THINGS. Truly, it made me want to cry, this opportunity. This Opportunity for more life, big life.

More travel? I was actually too tired, really, for that. Instead I took on a new freelance assignment, and started working on a book proposal, and got ready to double down on some volunteer work I’d put aside, and maybe I should join a yoga studio, and even thought about taking a second little work assignment…

And so in September I had a meltdown. After one week of the new writing assignment I was in bed and in tears, exhausted, and really uncomfortable, having aggravated my shoulder from a week hunched over a computer trying to meet an impossible deadline. I resigned from the assignment– only to have them come back and cut the assignment in half for me so I could continue. It is still tough, actually, and takes almost all the energy I have on the days I’m doing it. But I am very happy to have work, to be a person who works. The alternative we’d discussed was going on disability, and I am SO not ready for that. So, for three months– for six months actually– I will work this project.

The volunteer stuff, which happens evenings, I’m just not up to, probably anymore ever. I had to realize that I did six months of chemo and will not bounce back entirely. In the crush of summer BIG THINGS, I hadn’t recalibrated. I hadn’t down shifted. I hadn’t really considered what that round cost me. I resigned the committee and the other small job. I put aside the book proposal after discussions with a subject expert showed me just how much work that would be. Maybe later.

I was left with the garden, which is in full swing in September and October. In fact, I just picked another big pail of ripening half-blighted tomatoes this morning. I didn’t can, but I did freeze, and chop, and keep cooking.

And though swimming was over even at the beginning of August, I walked. The fall has been way too wet, and way too cold, but I’ve walked, and gone to the gym some, and every day I walk the prairie paths. That has been a joy. And I’ve kept submitting my novel, am preparing for a “pitch conference.” November has some jewels in it: the conference, a Vikings game, Thanksgiving in Austin, Texas. Meanwhile, I’ve tried, really tried, to shift down. Outings to Minneapolis instead of Chicago. Mowing the lawn with my new used zero turn radius Toro mower (oh yeah). Garden. Movies. Books. Work. Prairie. Eating my anti-angiogenic foods, my green tea smoothies and yogurt breakfasts, all good things and beauty where I can find it.

This orange/red “Mexican Hat” coneflower is one of five new types of flowers
we saw on the prairie this summer. It was a great year for the prairie.

And I kept writing, even though the blog has been down. I’ve been over at medium.com . I also wrote a few for Bearings Online, where I am the poetry editor. You can search my name there to find my essays. Essays are not the same as blogs. It’s been a time of essays for me. Definitely a time of Big Life, though not for as many hours a day.

But I missed posting about the garden the most. So I’m back. And I’ll keep you updated.

Posted in cancer, garden, prairie, writing | 5 Comments

First Flowers

Posted on June 14, 2019 by susanmsink@gmail.com

June has become my favorite month. It used to be October, but really, how can you beat June in the garden and on the prairie? Especially after an extra-long, extra-cold winter, to have fresh greens, asparagus, and radishes to eat and, well, not just ANY flowers come up first.

the ephemeral spiderwort are already past their prime

Lupine. They are at once delicate and sturdy. Even their leaves are impressive and flower-shaped. Their stems are hardy and graceful. Their petals are fresh and velvety. And purple.

I don’t know about you, but I expect yellow flowers– purple and red are always so impressive in nature. Be it berries or leaves or flowers, purple draws you in. In a large prairie like ours, you see it in your peripheral vision and say to yourself: “What is going on over there?”

This past week, two monarch butterflies have been fluttering and getting busy, hopefully laying eggs on the underside of the milkweed plants that are growing up everywhere.

Before you even get to the prairie, right there next to the septic field, right on the LAWN, is this clump of daisies. I’m very tempted to take out my shovel and move them into my garden.

And once you head down the path to see the lupine, you get an eye full of some other impressive flowers coming into their own. I mean, seriously, how can you not gasp when you are confronted by wild white indigo. Looking like a cousin of lupine (both are members of the pea family), we’ve only had these bee favorites the past few years– but they are spreading. They are more stem and leaf than flower, with wild waving arms: “look at me! look at me!” The yellow Alexanders that spot the prairie are hardly noticeable in the midst of these guys.

Wildflowers and natives don’t last long as cut flowers. They’re meant to be seen in place. But I just had to bring some inside. If even just for a few days.

And meanwhile, once you’ve appreciated what the nurseries call “the stunners,” you can soak in the possibilities. In a mature prairie, the native grasses grow in clumps, with spaces between. And it’s clear to see black-eyed-Susans (rudbeckia) and bee balm (bergamot) and even prairie clover on the way. And white sage is starting to form up into its gray hair streak through the green.

Teeming with life. When I walked out to take a photo of the indigo, a little green caterpillar ended up on my neck! Can caterpillars fly? Maybe only in June.

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Writing Through

Posted on April 4, 2019 by susanmsink@gmail.com
A possible cover image, taken in 2014 when I’d just begun, in Niagara, North Dakota

Yesterday, sitting in my bed after chemo, I finished the final draft (as far as anything is final) of my novel, Failure to Thrive. I am now working on finalizing an agent list for querying and writing the query and synopsis.

And yes, given I’m in week 14 of chemo, cycle 5, it feels somewhat heroic to have written and revised and revised again a 104,500-word novel. And I love this novel. I can’t wait to share it with people.

And I keep thinking of Anne Sexton.

It was not until college, when a senior introduced me, a young freshman, to Poetry magazine right there on the library shelves, that I learned there were actually living poets, in America. Such was my high school education (the honor’s track!) and its focus on white, dead, mostly British men.

Any study of American women poets, however, was bleak. Anne Bradstreet was as boring as dirt. Emily Dickinson was nuts. A recluse in a Victorian collar, sewing her poems into “versicle” booklets and storing them in a cedar chest. How much better to be Walt Whitman, that hack, boisterous and virile and singing America!

Anne Sexton, photo credit: Rollie McKenna

The first female American poet whose work I loved was Anne Sexton. I loved her use of figurative language and still think she’s the best simile-constructor ever. Her work was both personal and accomplished. I had a volume from the library that included a chronological chart of her life/career in the back. It stopped me cold. The entries showed her struggles, what she was “writing through,” quite clearly. One day she’s accepting a major award, a few weeks later a suicide attempt. Births of children. Books published. Prizes. Hospitalizations.

I escaped the addictions and the mental illness. But I got cancer. And now, I’m writing through. On good days I work, on “down days” I try not to think of all I can’t do. Every day I try not to think about what is to come, how much longer I have to do this. What it might mean to publish, to go out in the world with this disease and speak, read, travel for the book. What success might look like now.

1962 photo of Flannery O’Connor. (AP Photo)

I’ve taken down the selected letters of Flannery O’Connor and put it by my bed. Another writer who wrote through, leaving New York City for the Georgia peacock farm and trying to live quietly enough, long enough, with the lupus that killed her at 39 in August 1964, six weeks after my birth. She managed to write more than two dozen of the greatest short stories written in English, and two astonishing novels. And as the Wikipedia entry says: “Her daily routine was to attend Mass, write in the morning, then spend the rest of the day recuperating and reading. Despite the debilitating effects of the steroid drugs used to treat O’Connor’s lupus, she nonetheless made over sixty appearances at lectures to read her works.” It also tells us “she lived seven years longer than expected.”

Today is a somewhat down day. The little mousetrap on my belly just beeped, so for the next hour I’m receiving Neulasta for my white blood count support. I’m tired and a little foggy. But I’m making my list of agents, working on my query and synopsis, getting the manuscript formatted and printing it out for the binder I have waiting. Writing through.

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The Cancer Kitchen

Posted on February 19, 2019 by susanmsink@gmail.com
giant cancer-fighting salad.

As you know if you read this blog, I am kinda all about the food. I love cooking, and I love growing food to cook. Cancer and food, or more specifically chemo and food, is a huge challenge. The challenge is mental and physical. You can drive yourself insane with it. I sometimes drive myself insane with it. If I have a meltdown during treatment it is very likely to be related to food.

First, there’s the very basic question: What should I eat? Most medical folks will tell you to eat what sounds good to you, eat what you can, drink a lot of water and don’t lose weight. Plenty of other folks will tell you all sorts of things about what to eat. Here’s a good little list:

  1. No sugar, because sugar feeds cancer. (Okay, but what about carbohydrates? What about potatoes and pasta? Noodles and potatoes are my good friends when nothing else tastes good.)
  2. Fruits and vegetables. (Not raw veggies much of the time because your immunity is compromised. But dark leafy greens, cooked. All the colors. All your veggies well cooked. Or maybe not– maybe raw and organic and well washed. Not fruit juice because, sugar, but fruit yes, but maybe not fruit with veggies.)
  3. Garlic, ginger, turmeric. (But maybe not– do those things actually interfere with the chemo? Naaah.)
  4. Lots of water. Keep those tissues healthy, move that chemo out of the kidneys.
  5. Good proteins.  Lean, skinless chicken cooked to the right temperature, cottage cheese, yogurt, eggs. Eat early and often to keep your body going.

I grew up in a household where food was seen as medicine. We ate to prevent high blood pressure (Pritikin Program, no salt). There was a time when the closest you could find to a sweet snack was a carob-covered raisin. If it didn’t taste good, it was probably what you should be eating. When anyone got sick, they had to change their diet. So detox tea came to our house early, and different supplements, and different diets (including Atkins, which lowered cholesterol through ketosis, but I never participated in that). It was a form of control, to think you can cure things or remain healthy by just carefully calibrating what you eat.

Cancer probably should prove this idea is wrong, or at least has its limits. But for me, I’ve found myself continually cycling back to wondering and feeling helpless or stymied about what I should eat. I’m just beating myself up about pasta! Cause some days what I really want is (homemade) mac and cheese! Isn’t that silly? I’m pushing myself to make my steel cut oats and quinoa and freeze portions for the week, make those chicken thighs ahead and get those portioned out for when I won’t want to cook, and always keep an eye on the veggies and force myself to have some spinach even if it doesn’t sound good.

I can’t stop thinking about the guy who eats the super cancer-fighting salad every day. Oh man. This guy. Chris Walk. He’s a miracle, of course, having lived some long number of years with cancer. Having beaten cancer. Because of the salad. It has everything in it, every color of good vegetable, plus fermented sauerkraut, plus nuts, grains, and a little good oil… That salad looks like such a chore to me! And I’ve tried it a few times, it’s a good salad. But I can’t keep up with that plan. And of course, if you’re the type of person to beat yourself up and feel responsible, the question is: So now do I have to die because I don’t make the salad??

OK. So I’m going to really work on quitting that kind of thinking.

A kosher kitchen sink

The other main issue with the cancer kitchen is contamination. The issue with everything, but particularly the bathroom and kitchen, is contamination. My immunity is compromised, so I need to watch out more than normally for food-borne illnesses. I need to make sure the food I eat is fresh. We’re the kind of house where leftovers sit around for a week until we get to them. I’ve never had a problem with that, but now I need to watch it.

Also, I might have to be on chemotherapy longer than four cycles. What I’m reading and seeing is that after the first recurrence, chemo can become a longer term process. I’m quite happy to report that I’m tolerating this treatment really well. But I kind of planned to just tough it out for 12 weeks and go back to my other life. If chemo becomes part of the “normal,” I gotta think that through. I have to think through my kitchen.

It feels like what I need is a version of a kosher kitchen. I’m going to look at my fridge, particularly, and make some changes.

The other day I opened up a Tupperware container and inside it were two raw chicken thighs. I freaked out. My husband had made us a great chicken dish several days before, but he only used 4 of the 6 thighs (don’t ask me why, something about a recipe). The other two had just been sitting there. Raw chicken! My husband is an absolute sweetheart, and having him home during treatment (last time was entirely during his landscaping season) has been a real blessing. But he doesn’t seem to realize what’s going on in this fridge!

Poor guy is scolded when he eats the fresh hummus I just made, because why isn’t he eating that cheese I can’t eat that is going bad? Why is he eating yesterday’s leftovers when there is some soup in there that it too old for me to eat, but I can eat yesterday’s leftovers. I made sprouts all winter, and I took to marking “Eat First” on ones that were past their prime, while I focused on the fresher ones. (Sprouts are a challenge.) Now I see I need to do this in an even more deliberate way.

I cook for us. I grocery shop. That isn’t going to change, nor would I want it to change. It’s going to be a little more difficult, as I figure out what I eat and how my husband fits into that. There are going to be more “eat first” signs. He’s going to have to accept that some things are going into the compost (those two tomatoes in a jar that have just been sitting there waiting for a recipe to come along to use them), which feels like food waste to him but is going back in the ground/garden. I might have to shop more often, buying lower quantities, to make sure the food is more fresh. I can do that.

But most of all, I’m going to try to give myself a break, and all cancer patients should do the same. I talked to a friend recently who said, “Susan, all this is just tweaking around the edges. You’re not drinking alcohol or eating processed sugar. You’re eating foods you canned from your garden. You’re eating well.” The super salad is not going to be the difference between killing cancer and not killing cancer. It’s not about the exact measure of turmeric.

All of this will be easier when it’s not February and my garden is up and running. I planted leek and onion seeds today, so the 2019 season begins. Meanwhile, there are cans of tomatoes and frozen green beans and Brussel’s sprouts, cans of tomatillo sauce, too. And red and purple potatoes that I’ve been loving eating roasted with some Everything-but-the-bagel seasoning from Trader Joe’s on top!

Posted in cancer, food, garden | 3 Comments

Little Mousetrap on My Belly

Posted on February 1, 2019 by susanmsink@gmail.com

The oncologist nurse said “Of course, you know it from the commercial.” She was talking about the “onpro” version of Neulasta. Oh yeah, I know that commercial. They play it all the time. I hardly even watch commercial television and I’ve seen it plenty.

Neulasta boosts white blood cell generation, and my WBC counts struggle on chemo. I couldn’t take it last time because you need a one-week break in treatment to let it run its course. Because it generates the “fastest growing cells” it can interfere with chemo, which is busy killing the “fastest growing cells.” In fact, the protocol, because of that, means you can’t get the shot until 24 hours after chemo ends. Give the chemo a chance to hit its target.

So I had two choices: come back in today and get the shot, or go with the “onpro.” Onpro of course! This will be my new Day 8 protocol, since Day 15 is no treatment. It’s a bit of overkill this week, since I just finished 5 shots of xarzio for the same problem and my WBC was great yesterday. Immunity restored! But this will get me on track for the next two cycles.

the commercial

Modern medical technology is incredible. So the nurse sets a timer on the onpro capsule, 27 hours, and she tapes it to my skin. A green light starts blinking. She says in a few minutes it will start beeping or clicking or both, and then the needle will go in.

I say, “Like a mousetrap?”

She frowns. “No! Not like a mousetrap! It will just startle you.”

Then it starts beeping. And suddenly, “Snap!” Injection! I jump and squeal. Yeah, that was startling all right!

The beeping stops and from then on it will just keep blinking green every 5-10 seconds. If it turns red, it’s come unattached and I have to come back. No showering. Watch it doesn’t come out when you sleep. Unlike the ad, it is on my belly, not my arm. My belly blinks green through my pajama top and I lie in bed and watch it. I start singing my own version of the great They Might Be Giants Song, “Birdhouse in your soul.” It’s so apt! “I am not your only friend, but I am just a little glowing friend, but really I’m not actually your friend…” and “who watches over you? make a little mousetrap on your belly!”

The surreal, Cancerland part, is that although we’ve never had a mouse in my upstairs bedroom, two nights before treatment I was awakened to scratching on the backpack by my bed. I picked it up and a little black– looked like a baby mouse– ran out and away. I was pretty freaked out and left the light on. Started thinking about mouse nests in the closet. It crawled around the baseboards scratching and squeaking and eventually got quiet.

The next night we set a trap and I watched television downstairs waiting for it to go off. about 9:30 there was squealing for a minute and then quiet. I came up and sure enough, it was dead. Put it in the trashcan for morning disposal, when we saw that it was not a mouse but a baby MOLE! A blind, snouted, never-seen-in-the-house-before mole! This was the depth of the Polar Vortex, so not surprisingly there have been more critters than usual. Mostly mice in the kitchen and basement. But yuck. A mole.

So maybe I was more than unusually prepared to have a little mousetrap placed on my belly.

In two hours, there will be more beeping, and then over 45 minutes the Neulasta will go into my system. Once it turns off, I can peel it off and throw it away in a container, even though it is medical waste. This morning I went for a walk at the gym and lifted some light weights, still riding on yesterday’s steroid. My face is burning from the chemo, I am decidedly less strong than I was three weeks ago, and I’ll be putting those chicken thighs in the oven to tide me through the down days of the weekend. Free of my mouse trap, I’ll crawl along until I finally settle down.

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The Blessing of Good Thoughts

Posted on January 24, 2019 by susanmsink@gmail.com

There must be a lot of people praying for me. It’s very clear to me that the peace I feel, the love I feel, even joy at times, comes from the prayers of others.

Sure there is frustration, even to the point of occasional meltdowns. Evenings are worst. When I’m poisoned, I’m down hard. We had a difficult fall and emotional Christmas. My husband is remodeling the bathroom and just disconnected the main floor toilet. Enough said on that one. (Still, it is wonderful to have him home, outside the landscaping season, to take me to appointments, get me things, and just be here.)

But there is also more time here in treatment in winter to consider my good life. My very, very good life. And to think good thoughts.

There are many things to think about, and I find myself thinking good thoughts. My White Blood Count (WBC) is very low, and because I get treatment again next week, I need to get five daily shots of zarxio to boost the count. Not a big deal, but I got up and out in -4 degree weather to go to the Cancer Center this morning. And will for the next four days, including weekend trips to the hospital. I will not be feeling good for two of those days.

But on the way home, I found myself thinking about small acts of kindness and people who remembered them when I forgot or hadn’t even thought about doing them. I don’t think of myself as a particularly kind or even considerate person. I’m lousy at all etiquette thank yous and a complete failure at sending mail, and I find myself wishing I’d done something kind after the fact more often than I like to admit. But this day, driving home, I thought about a quilt. It was made for me by a a Jesuit priest in Cincinnati, on the occasion of my wedding, after I worked with him on his book. Later he wanted me to send it to him to display in a show. I had it dry cleaned and sent it along with money for the return postage. He was really grateful about the return postage. It seemed obvious to me that was required following this gift. I was thinking of the quilt because it’s on a bed in a guest bedroom where I’m doing a sewing project. And before putting a bunch of stuff on the bed, I carefully rolled it up and put an old blanket on it instead. I’m not great at caring for my things, either, but the quilt!

This made me think of a much earlier time. I was taking care of my boyfriend’s sister-in-law after a devastating surgery. It was just after college and I hadn’t yet landed my first real job. I was working at a health food store and could spend some days with her. She was 20 years older than me, very successful, and intimidating. I made her lunch, most days a bagel with cream cheese and tomatoes. I made it into a happy face with a carrot smile on the plate. A couple years later, as my relationship was ending and I was moving to New York City, we were at a family gathering and she said she’d never forget those bagel sandwiches. I had already forgotten. In fact, I’d assumed she found them silly. She said they made her so happy. She hadn’t said anything at the time. I thought of this because as part of my self-care, I bought myself some fancy new sheets. During that recovery, one day her husband bought new sheets and had me take them up to her. (He was on crutches and worked full time, which was why they needed help.) She smiled wanly. Her husband came up and we made her get up while we put on the new sheets (I thought they should be washed first, but whatever.) “Blue,” her husband said. “Your favorite color.” After that I have always thought of sheets as just the most luxurious gift to oneself!

I am full of memories. And like the last time of treatment, I am surrounded by love. I’ve been getting a lot of cards (some people are really good at that!), primarily from an online women’s group I’m a part of. Some of these women I don’t really know. Others I knew in college, but not well. Some take the time to write to me about something specific– including how they met me or became aware of me, and things that remind them of me. It’s amazing to know about these connections, which of course we all carry with us. To have touched someone’s life in some small way. We just have no idea– and then we have cancer, and people tell us.

So here, in treatment, I’m spending some time resting in these thoughts. Life is good, and has been good even in the hard times. I have done a good job of being in this world.

On the energy of these good thoughts (and yesterday’s steroid before chemo) I made Indian food for dinner tonight, and got started on those curtains. But at 4:00 every day I enter “rest time.” I read, or nap, or just Facebook, or write, or sit around and think good thoughts.

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What Does Recurrence Mean?

Posted on January 11, 2019 by susanmsink@gmail.com

After announcing that I was returning to treatment, I heard from a number of family and friends who were struggling with how to respond. Several people said they felt selfish for feeling optimistic or like they were unduly minimizing my illness, etc. They were wondering if there’s a bit of denial and they should be doing something more… also wondering if I’m having “false cheer” or “trying to put a brave face on it.” 

This is something I’ve thought about a lot.
What these friends are talking about is called hope, and it is a wonderful and important thing. Optimism and hope are absolutely called for in this case. Last spring I interviewed Kate Bowler, who wrote about her cancer for the New York Times and then got a book deal and then had this big splash book and is now everywhere. She is in experimental treatment and so far holding steady. What was a 6-9 month prognosis is now over three years. And she spends all her time writing (beautifully) and talking about this terrible thing that was and is going to kill her. Wowza. I would not want to be in that place at all. She saw it as a death sentence (with very good reason) and got about the business of how that feels and what that means, etc. Her most recent article for the New York Times
is about reimagining hope (or letting go of the concept, I’m not sure) when you have no future.

Really, honestly, at diagnosis when I heard about all the treatment available and (outliers, but I’ve met some) living for ten, twelve, even fifteen years thought, well, I am not actually dying. Not now. I might have a decade and I don’t want to live it in a state of dying. I don’t want to live it in a state of “living every minute to its fullest” either. The best way to look at it, it seemed, was to take the example of those I know with chronic diseases– Rheumatoid Arthritis, Parkinson’s, MS, and others who have to basically live this out. “Flares” will happen and we will tamp them down as long as possible. There will be phases of remission and of recurrence, of treating, then assessing where I’m at, then rebuilding. That is what this disease means to me.

And truly, I don’t feel like I’m dying right now. This cancer absolutely seems treatable. It is not in my bones, in my brain, in my heart, my liver, my pancreas. It’s not even in my bowels, which is a yucky surgery and change in life and really common. Yeah, it sucks that it is in my lung. I wish it was just sitting in the empty space where my ovary was not bothering me. I could have put up with that for a lot longer and gotten a longer remission. My body is strong and can manage the chemo as well as anyone. I truly feel those things. I’m not putting on a “brave face” or trying to cheer anyone up. No one needs to feel like this is a disaster. I’m not 35. I don’t have kids. I just wrote a novel. My pursuits are things I can do while resting– reading, watching movies, writing poems. And as only cancer patients truly find out, so so so many people love me.


I know people who are getting chemo and other treatments and yet are in a “dying” state. They are getting rid of things. They are thinking about life when they are gone. They are not making any plans. They are in some ways taking leave. I try to encourage them that no, when you reach the point that there is no more treatment offered, then you can start to die. But before then you are just healing, it is all treating the illness. That’s not the same space. That’s a positive space. You’re killing cancer! You’re freaking killing cancer!

And when you’re back in remission, well hello, you’re rebuilding and living without the poisonous cure. You made it to an island of health to rest before the next big swim. 

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Recurrence 1

Posted on January 5, 2019 by susanmsink@gmail.com

head shot hi res

first day of chemo first time around, March 2016. Trusty blue flannel shirt.

Today was my first day of chemo to treat a recurrence of Stage IV ovarian cancer. We first saw signs of a recurrence back in March, when a small nodule and “signs of additional nodularity” appeared between the lobes of my right lung. In the 10 months since, the cancer has remained in my right lung, but only since Thanksgiving did it become uncomfortable to the point I decided it was time to treat. I was getting more tired, too, and it was just bothering me.

Time to treat. I had a 25-month remission, time between treatments, which is considered a very successful outcome. We knew the lung would be the trickiest place to eradicate it, as there was no way to operate on the lung during the debulking surgery, and small cells in the fluid could bring it back.

I’ve been “getting ready” since Thanksgiving. Continued to work out and build strength, though by the end the workouts were more walking than weights.  But I’ve been trying to remember, too: What do I eat during treatment? What more can I do to promote health through it? But as much as I tried to remember (and I know I left lists for myself somewhere) I didn’t start remembering until today.

Oh yeah, I get steroid in my pretreats (now is regularly given to help with nausea) which helps me have energy that day and the day afterward. I can do a walk after the chemo (which supposedly helps).

Oh yeah, I need to get wipes for the toilet seat and everyone has to flush every time because of immunity compromised and chemo flushing out of my system.

And there’s “chemo laundry,” keeping those clothes from 48 hours separate to launder.

Oh, wow, my sinuses have crashed quickly– need that saline gel nasal spray.

I laugh at myself, thinking this is so much like having a second child. Fewer pictures will be taken. Not as much attention to protection from germs– I’ll try, though! (Am I supposed to use deodorant? Is there something about the toothpaste tube and how to dispense to avoid cross contamination?)

Before treatment started, I mostly tried to reassure myself that my life didn’t shut down that first time, which was an even harsher regimen than this treatment. I kept working. I saw people. I had good days and bad days. Why wouldn’t it be the same this time? Also, no hair loss. People out there in the world wouldn’t even know unless I told them.

Today was a surprisingly good day. After the chemo, I went on a “brisk walk,” part of a new regimen I’m trying that includes a bone broth fast the day (or two) before and the brisk walk right after chemo for 30-45 minutes. The steroids help with that part. I came in and cooked and cleaned up and did some online work. I stopped when the headache hit, and rested.

The headache. Not sure I remember that. And something else is new– trying CBD oil for pain and to help with sleep, along with melatonin and Tylenol when necessary.

And here we go. I also more or less forgot what I wear and take to chemo. But the blue flannel shirt was still there (easier to access the port) and a bottle of water, my laptop, my phone. No blanket like my first, first time– they have warm blankets at the Cancer Center, but also my room was SO warm! The blankets, and the hats, stay home, to keep me warm and comforted.

xoxo

 

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