The Assertive Cancer Patient

The Dog Has Died

Younger Son's Golden Retriever, GB, died Saturday.

I had to give YS the news yesterday, Mother's Day, when he got home from a weekend retreat sponsored by his school, Seattle University.

Older Son was home as well, but none of us felt like going out for dinner, so we postponed that until Wednesday.

We decided to have GB cremated, and we will take his ashes and scatter them at the beach next time we go. GB loved the beach more than any place else on earth.

The photo at the top is Younger Son, incognito, walking both dogs on Christmas Day. The lower photo is me at the beach with the dogs, two summers ago.

@ Jeanne Sather 2008.

What to Do When You Can't Cry

A reader just e-mailed me, and she said something about crying easily and trying to get over being embarrassed by that.

And of course I had the opposite reaction--so many times I want to cry, or feel like crying, and I can't. (It's family history stuff that makes me this way, what can I say?)

When I need to cry, and I can't, here are some of the things I do:

* Scream off the bridge (this one works better with a friend along, but solo is OK too)

* Break plates (and later use the pieces in a mosaic)

* Watch weepy movies.

What do you do when you need a good cry? Post a comment below.

@ Jeanne Sather 2008.

Sad on a Sunny Day

Those of you who know Seattle know that for most of the winter we live our lives under heavy gray skies--rain, fog, more rain ... very little snow, very few clear days. SAD is a big problem here, which is why I finally bought myself a HappyLight.

But today is one of those rare winter days--clear and bright. Colder than usual. I can see the Olympics from my front porch.

Normally a day like today would give me a huge burst of energy and I'd be out gardening and getting all sorts of things done. But not today.

Today I'm sad.

My uncle--my only surviving uncle, actually--is in the hospital with heart problems. He's been there for more than a week now, and I've been in visiting him the past few days. Took both older and younger sons to see him last night.

He's having a tough time. Surgery was on the calendar for today, but now has been postponed till tomorrow.

He's in pain. And he's scared.

So I'm doing what I can, which isn't much. Just sitting with him and talking. He's been telling me all sorts of stories that I haven't heard before.

The ICU is a weird, somewhat awful place. All the monitors, with their flashing lights and beeps, are enough to scare anyone into a heart attack. But I like the nurses there. Like cancer nurses, I think nurses who choose to work in the ICU are a special breed.

@ Jeanne Sather 2008.

Food Is Love

By Krista Winjum

“Food is love,” was my mom’s mantra.

She taught me the connections between the earth, food, and seasonality. We grew many of our own herbs, vegetables, and fruits wherever we lived. On school holidays, we ate our way across Europe.

Joanne Winjum, my mom, was a small-town Minnesotan farmer’s daughter with a Ph.D. in art history. My dad, Jim, is a small-town Minnesotan trucker’s son with a Ph.D. in accounting. Due to my parents’ advanced degrees, we lived in England when I was 4 and 8.

At home in Ann Arbor, Michigan, starting at the age of 10, I watched Julia Child on Saturday mornings instead of cartoons. She was just as funny as a cartoon, but real. She taught that while technique was serious, cooking and eating were fun.

Mom shared my enthusiasm for food, fun, and Julia.

Our bible was “Mastering the Art of French Cooking,” co–authored by Julia and Simone Beck. Our favorite dish was her famous French onion soup, which became the centerpiece of our New Year’s Eve dinners.

We never made recipes as written. Co-conspirators, our love of flavor lead us to add extra this, an extra spoonful of that. If a recipe called for one clove of garlic, Mom added three. If it called for two, she added five. Most nights, we left the table with garlic breath.

Our kitchen accommodated several cooks. Dad wired speakers in every room of the first floor, so we’d blast music, chop, stir, sing, and dance.

Mom’s favorite song was Three Dog Night’s “Joy to the World.”

“Jeremiah was a bullfrog,” she’d sing. “Was a good friend of mine.” Then we’d get silly and start imitating Julia: “Save the liver!” and toast each other with “bon appetit!”

While we both loved food, we had different favorites. Mom drank iced white wine. I liked red wine. She loved anything crispy-–the tiny French fries that fall to the bottom of the bag, the sugary, brittle corners of brownies, and the crunchy caramelized end pieces of roasts were her favorites.

I liked the softer bits, so I got the bigger French fries, brownies from the middle of the pan, and the rare slices from the roast. We snuck food onto each other’s plates, trading crispy bits for soft.

However, dislikes were not coddled. Mom loved certain vegetables that I hated. This meant that I had to eat green-pepper-laden goulash, Brussels sprouts, and piles of lima beans.

We repeated our favorite dishes throughout the seasons. The classic French recipe "40 cloves of garlic chicken" (Mom used 60), and boeuf bourguignon were standard on cold winter days. Summer brought salade nicoise and pitchers of homemade sangria.

She made special treats when my brother and I were sick. A cold meant perfectly poached eggs on buttered toast. The flu meant real brandy in our lemon tea and rich chicken and dumplings.

When I had back surgery in 1996, Mom flew out to Seattle with bags of Hungarian paprika. She made pork paprikash with homemade spätzle (noodles), coq au vin, and chicken and dumplings. I still have a bag of the paprika in the freezer.

Mom was diagnosed with end-stage lung cancer in December, 2001. During 2002, I visited several times, making her favorite foods each time.

I cooked gyros with ground lamb and lots of garlic, but left the lemon out of the sauce because it hurt her mouth. She enjoyed my homemade baklava, and my bread pudding was sweet and soothing.

I returned to Michigan when Mom went into the hospital the day after Thanksgiving 2002. She was so sick that she hadn’t cooked Thanksgiving dinner. After dad and I visited her in the hospital, he asked me to cook the full dinner.

For our family, Thanksgiving dinner was about cooking together, music blasting, drinking wine, and having fun. That day I cooked alone, tears running down my face. I roasted the turkey, made stuffing, and tried to remember exactly how mom made her incredible brown-sugared yams.

When the dinner was ready, I couldn’t bear to sit down to eat it alone with my dad. We packed it up, took it to the hospital, and ate with mom. She was thrilled.

I haven’t been able to cook Thanksgiving dinner since.

When mom went into a hospice a few weeks later, I brought smoked salmon linguini and lasagna, fresh fruits and vegetables, and chocolate cake. I topped toasted English muffins with poached eggs.

I don’t know if she was actually able to taste the food. The cancer was in her brain, affecting her senses.

She couldn’t smell very well, and I think her sense of taste was also affected. However, she declared everything “delicious” and I quoted her back to herself, “Food is love, Mom.”

On New Year’s Eve, we had Julia Child’s French onion soup. Mom’s eyes sparkled as I brought it to the table, and she held my hand while we ate.

That was the last meal I cooked for her.

When she died a few days later, we wrote in her obituary:
“Joanne never wore perfume from a bottle–-her signature scent was that of delicious meals. When we smelled the aroma of olive oil, garlic, and onions, we knew that Mom was in the kitchen.”

At her funeral, the only song we played was “Joy to the World” from Three Dog Night.

On Aug. 13, 2004, I logged on to my computer at work and read that Julia Child had died. It was as if my second mother was gone. I burst into tears when I read that Julia Child’s last meal had been her own French onion soup, the same as I cooked for Mom.

I felt the loss of my mother all over again in Julia’s passing. We were so intertwined. From them both I learned that food is love–-put your heart into it and share it with as many people as you can.

This story was written by Krista Winjum, a student in my writing class at the University of Washington Extension during fall 2007.

See also: My Mother’s Garden

@ Krista Winjum 2008.

Winning and Losing

I’m jumping from project to project this morning, never quite finishing one thing before I go on to the next, trying to keep myself distracted and sane as I wait for a fax from the arbitrator who is deciding where Younger Son will live until he is 18.

No matter whether I “win” or “lose,” I am losing. And I feel incredibly sad that my son has moved out of the house at 16, when I thought he would be with me until he was 18 at least.

I pulled out a photo of the two of us when Younger Son was 3 or 4. We are leaning our heads together and smiling identical smiles, and the photo makes me cry.

Our relationship has been damaged by this mediation/arbitration, because for the first time ever, my son and I have been on opposite sides in a dispute between his father and me. In the past, it had always been me trying to get Younger Son what he wanted in disputes with his father.

If nothing else, it seems to have brought the two of them closer together, which was one of my goals, but I suspect it is a temporary alliance born of necessity.

What’s this all about?
Well, that’s the sad part. The whole thing started last fall when I realized that I was too worn down by my cancer treatment to be a good full-time parent to my younger son. I was still in bed when he left the house for school in the morning, and I was headed for bed again by 6 p.m., about the time he got home after cross-country practice.

We rarely ate dinner together anymore, because I was rarely eating dinner in those days (or now). No appetite at that time of day.

Then Younger Son began having some problems of his own, unrelated to my cancer, and I simply couldn’t cope. If I hadn't been a single parent, we probably could have held it together. But no, just me.

I asked his father, who lives in San Francisco, to take him for the spring semester, but his father refused, and parked Younger Son with a classmate in Seattle. I’ve been seeing him a couple of times a week. Now, we have to decide whether he remains in Seattle next year and starts college early, or goes to live with his father for a year.

One of my readers put it best in an e-mail to me, “You’re trying to push a reluctant son toward a reluctant father, because you think it is better than the alternative.” That’s exactly it.

We couldn’t agree, so we ended up in a session with a mediator/arbitrator last Friday. The way that worked is that she tried to get the two of us parents to agree, and when it became clear that we never would it was left to her to make a decision as an arbitrator.

Neither of the options is perfect, for any of us. I see that clearly. But I need to know that my son is living with parental supervision until he is 18, even if it is not my supervision.

I’m Not Good at This Waiting Stuff
It’s 1:30 p.m. and the fax has not yet arrived at my lawyer’s office. My anxiety and grief are going through the roof. I think I’ll fold a few towels and then go pot a couple of plants. Then back to check the e-mail yet again (the 12th time today).

Now, it’s 2:40, the plants are potted, and look lovely. I also watered the strawberry bed. Now I’m back to chewing my nails. Going to call my lawyer’s office to see if they have the fax, and if not, I’ll take Constant for a walk. Rain has stopped for a few minutes anyway. It’s cool and fresh.

(If you’re wondering why I watered the strawberries when it’s raining: The rain wasn’t heavy enough to soak them. Berries need a lot of water at this stage.)

Grief. I feel like I failed my son. I realize that the cancer was not my fault, but I still feel that mother guilt that is so much better expressed in Japanese: “I went and got cancer on them,” is said in Japanese with a verb form called the “adversity passive,” which we don’t even have in English.

“My father died on me” is about the closest we can get, but it’s not a unique verb construction like the adversity passive in Japanese, which has the implication that you were harmed by the other person’s action built right into the meaning of the verb form. But I'm digressing here.

It’s 3:10. Called my lawyer, who was not available. Asked his assistant if the fax had arrived, and she didn’t know. Left a voice mail message.

CCed on an e-mail from my lawyer to the arbitrator, asking where her ruling is. So now I wait some more. Guess I’ll take Constant for a walk. My bag of tricks is about empty.

After all this, at 3:15 an e-mail arrives from the mediator/arbitrator’s assistant saying that the mediator is not quite done—had to go to a doctor’s appointment—and won’t have a decision for us until tomorrow.

This calls for major coping skills. And now the rain is pouring down, so no dog walk till it slows down.

I guess it was a mistake to water the strawberries after all.

Note: If you are new to my blog, you may not realize that I am extremely sensitive about people giving me unwanted advice.

Please do not e-mail me telling me what I should have done in this family situation. Or post a comment saying something like, “No matter what happens, it will all turn out for the best.” Or, “You did the best you could.” This is not helpful.

What I feel is grief, and I don’t need to be pushed or prodded out of my grief or my sense of loss at no longer having my much-loved son living with me.

Words of sympathy and support are gratefully accepted.

@ Jeanne Sather 2007.

When Friends Die

My good friend Gudrun in Germany, who often puts translations of my posts on her site www.bcaction.de, is grieving the loss of a close friend from metastatic breast cancer.

Here is what Gudrun wrote on her site:

On May 29, 2007, our friend Conny died as a result of breast cancer, seven years after she was first diagnosed. Conny was only 51 years old. She is survived by her 26-year-old son.

During her last days, Conny had to endure unimaginable pain. Just when she wasn’t able to fight for herself so well anymore and became in need of help like never before, she was not given enough morphine, and the medical care system showed deep rifts. We are very sad.

In several e-mails, Gudrun told me more about Conny’s last days, and how upset she was that Conny’s doctor cut the amount of morphine and Valium she was receiving from her usual doses, so that Conny was in terrible pain the final days of her life.

Conny’s cancer metastasized to her brain about two months ago, Gudrun wrote, “and the medical support in this time was horrible. The last four weeks I was at her side every day and it was a big struggle and no help anywhere.”

Gudrun begged the doctors and nurses to give her friend enough morphine, but they brushed her off, and the doctor left the hospital the day before Conny died without giving the necessary orders.

“I spoke with the doctors: ‘She is a dying person, please gave her more morphine …’ Gudrun said.

"’She won't die, give me time until Thursday,’ the doctor said. At that time she had 22 hours to live. I explained everything, again and again. ‘I understand,’ the doctor said. And he went home, without leaving instructions to give her more.

“Then we fought with the nursing staff. 'The doctor didn't leave a message. Your explanations don't interest,' they told me."

The next morning, Gudrun received a phone call at 8 a.m. telling her that Conny was dying. Gudrun and Conny’s son and the son’s girlfriend were with her when she died.

"There was nothing of 'humane medicine,'" Gudrun says. "There was not ONE word from her oncologist. For him I wrote a special poem. It's very angry.”

Now Gudrun is trying to help Conny’s son and his girlfriend find a new place to live. “They are alone and they have done ALL THE BEST for Conny,” she says.

And Gudrun’s own grief is overwhelming. “I loved Conny as my twin,” she writes. "I have been crying since May 9. … Her son is my son at the moment.”

I am so sad for Gudrun. And I am so angry for Conny. No one should have to die in that kind of pain.

Morphine eases pain, doesn't shorten life

@ Jeanne Sather 2007.

My Mother’s Garden

This story was written by Jennifer Donahue, a student in my writing class at the University of Washington Extension during fall 2006.

This is the first piece I've posted on my blog that was written by someone else, but this one just HAD to be here. I think writing it gave Jennifer an outlet for her grief over the death of her mother. And I know that my writing about cancer has helped me cope with the ups and downs of my illness for the past eight years.

By Jennifer Donahue

I don’t know why people always think they know how I should feel. Whether I’m falling in love, losing a job, or losing my mother, everyone has an opinion on what my feelings should be.

Take grief. You’re “supposed to” go through stages: denial, anger, depression, and acceptance, according to pop psychology. Like it’s some sort of 12-step program and then you graduate.

The problem is that grief doesn’t really work that way, at least it didn’t for me. It doesn’t exactly follow a tidy path. Grief isn’t neat; it’s messy.

I know this because my mother died six months ago. I can’t tell you which stage of grief I’m in, because I’m so tangled up in a web of emotions I can’t separate the strands. Sometimes I go through denial, anger, depression, and acceptance all in the same hour.

Sometimes I’ll think I’m wallowing comfortably in denial (and happy to be there, thank you very much), when a flash of white-hot anger will shoot through me. Or I’ll think I’m starting to accept my mother’s death and something–a note with her handwriting on it, her gardening tools left on the deck—will bring me to my knees.

That’s what happened last weekend when I tried to clean up my mom’s garden. Everything was dead or overgrown, and the weeds and blackberries were creeping into the empty spaces.

I have been putting off this particular chore for a while now. My mom worked so hard on the garden this spring, and when she was too tired to dig she would sit on the deck and direct me.

“Put the salvia right in the middle,” she said. “The hummingbirds will like that.”

I couldn’t bear the thought of undoing all that effort.

The first thing my mom did when she moved to Whidbey Island, Wash., from Virginia in the spring of 2005 was dig up the lawn and put in a flower garden. That fall she was diagnosed with pancreatic cancer. The garden took on a new significance.

As the spring of 2006 came, my mom seemed obsessed with working on her garden. She put in plants that would have meaning for me–strawberries and rhubarb to remind me of her pies, and forget-me-nots (a not-so-subtle message).

She didn’t live long enough to bake me a strawberry-rhubarb pie, one of my childhood favorites, but I found her recipe. I think I’ll make one for my children.

My mom planted peas, determined to spend her summer eating them right off the vine. She planted flowers–cosmos and lilies, penstemon and lupines--so her garden would be, as she said, “a riot of color.”

And it was a riot of color–bright purples, reds, and yellows. It grew like crazy, getting brighter and more alive each day, as my mom’s life started to slip away. She was dying, and it seemed that as her energy ebbed the garden thrived.

By June, the garden was full and lush. My mom was thin and weak, but still herself. She’d been distilled down to her purest essence.

Birds visited by the hundreds–we counted 26 separate species, sweet little wrens and goldfinches, swallows doing aerial acrobatics. My mom and I spent more and more of our time on the deck, just watching the garden buzz with life. Hummingbirds got so used to our presence that they would hover close enough to touch.

We were quiet in mom’s garden; there really wasn’t much left to say. My mom had only days, maybe a week left to live, but she still wanted to be outside near her garden every day. Her peas ripened just in time for her to enjoy one, and from her smile it was the most delicious pea she’d ever tasted.

My mom worried over the garden, wondering whether we’d remember to water it, hoping that the blackberries wouldn’t take over. But I think she was really worried about us.

From the day she was diagnosed, she refused to admit a fear of death, but she did admit being afraid of what her death would do to her family. She wanted to die at home, but she thought the burden would be too much. “I don’t want this to ruin you,” she told me.

When my mom fell into a coma two days before she died, we angled her bed toward a window. We moved the bird feeders so that if she did open her eyes, she’d be able to watch the birds.

She didn’t open her eyes again, and the birds stopped visiting.

After she died, I did all the things you’re supposed to do, going through the motions but feeling like I was under water. My stepfather moved back to Virginia. I took care of paperwork and phone calls.

My brother and I kept my mom’s house, and every time we visited this summer the flowers were thriving, a vibrant reminder of her life. We spent hours in the garden, tending our memories as we tended the flowers. But as fall came, the flowers began to fade and wither.

I realized that as long as the garden was alive, in some way my mom was, too. Whatever grieving I avoided all summer was creeping into the corners of my mind, just as the weeds and the blackberries were invading the garden.

I couldn’t ignore it anymore. I decided to face my grief and face the garden. Tears streamed down my face as I pulled out snapdragons and yanked up weeds. I wiped my eyes with my dirty hands, leaving streaks of mud across my cheeks.

I cut back the perennials, praying that they’d come back in the spring. I left bare wet earth. It was no longer the garden my mom had poured her heart into. I felt her loss more acutely than ever.

Now I am trying to think of that bare patch as the promise of a new garden. It may not be the garden my mom planted in the spring, but it will always have her in it.

Every time I look at the “riot of color” or dig my hands deep into the earth, I will know that she is with me. And when the flowers come up in the spring, I know that they will bring a knot of emotions with them. Denial, anger, and depression, yes–but maybe acceptance, too.

@ Jennifer Donahue 2006. All rights reserved.