I [Heart] My Life

Thank You, Heidi Swanson

To: Heidi Swanson, 101Cookbooks.com, heidi@heidiswanson.com

Subject: Life Saving Roasted Strawberries: Ray of Hope During Chemo

Dear Ms. Swanson,

I'm writing to thank you for your utterly amazing "Roasted Strawberries" recipe in your Super Natural Every Day cookbook. I'm currently undergoing chemotherapy for breast cancer and because my immune system is severely compromised I've been avoiding raw fruits and vegetables. When I began chemo in March, this didn't really bother me too much as I love roasted winter vegetables. But as the strawberry harvest here in Santa Cruz has been hitting the markets, this has been harder and harder for me -- particularly since my 4-year-old daughter loves eating strawberries by the handful! Your "Roasted Strawberries" recipe has been a life saver: I can enjoy the season's bounty without risking any food-born illness, and also without feeling deprived. I crave these roasted berries! I love eating them just as they are, fresh from oven. Thank you for such a simple, tasty way for me to enjoy strawberries during this challenging time!

April

~~

From: Heidi Swanson

Subject: Re: Life Saving Roasted Strawberries: Ray of Hope During Chemo

Thanks for taking the time to write such a nice note April.
It truly made my day - I love those strawberries, and I'm so happy
you're enjoying them as well.
I used to pick strawberries as a kid near Santa Cruz at one of the U-pick farms.

I'm so glad I could share a little something positive at what must be
a terribly difficult time.
Stay strong, Heidi

~~

Recipe <-- click here to see the recipe post I did one year ago.

Friday Fun

I'm reposting this video from 3 1/2 years ago so I can show it to Nia -- she doesn't believe she ever sucked on her toes as a baby (which is funny because up until about 6 months ago, her teeth were her favorite tool for clipping her toenails -- ew!). Oh how I love this little Bug! Happy Friday, all!

    

... this moment

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. Inspired by SouleMama. You can play, too!

PS. Nia has seen this picture, and it cracked her up too.

Partenting with Cancer Rule: Council of Mothers

I'm borrowing both the title and the concept for this post from a book I read last year called The Council of Dads by Bruce Feiler. Feiler had bone cancer. He was also a father to two young twin girls. He worried about his girls if he didn't survive and so carefully set up a group of adult male friends to act as their stand-in dads in the event he died.

If you're a parent, I'm sure you've played out / toyed with this scenario in your mind: Something happens & for some reason, you can't be there with your child every hour of every day. You look at your partner/spouse, you look at your family, you look at your child's teachers, you look at your child's friend's parents, you look at your own friends. Who do you want there for her when it can't be you? Bathing her, feeding her, dressing her, combing her hair, entertaining her, teaching her, disciplining her, comforting her, talking with her & answering her serious questions, driving her around, showing her new things/experiences / people, keeping her safe, maybe even putting her to bed?

Having cancer, I've had to take a big step back in the amount of hands-on time I have with Nia. And in so doing, I have had to put a lot of trust and faith in my community. This is a big change for me. BC (before cancer), I spent a couple solo hours with Nia each day in the morning, then she'd transition to Joe & I would work for 4 hours (in the house), and then it was back to me for more one-on-one time till Joe came home from work (7p some days, 10p others). So, roughly 8 hours a day it was happily just me and Nia, mixing it up with some play dates that we'd both go on.

But now, like I said, I can't do the 8 hours, especially straight, either because I'm physically tied up at chemo or another doctor appointment, or because I am physically and/or emotionally exhausted and MUST rest. The new norm: Nia spends even more time with Joe, but now Joe is frequently with me at doctor's appointments and he still has his regular work schedule over the hill. Next on the list are Phil & Pam, right upstairs. Nia spends a lot of time with up there, either formally because we planned it, or informally she'll run up there on a whim for an hour looking for someone to read to her, or play a game, or even for a snack. (Often, she says she isn't hungry downstairs but as soon as she's in grandma's kitchen, she's hungry. :) )

But Phil and Pam can't do it all either. So where does one turn?

In this way, a Council of Moms (and Dads) begins to take form. Unlike Bruce Feiler, the author mentioned above, I'm not building my council (Nia's Council?) for the big, What If I Die. Rather, I think children can benefit from a council of wise, compassionate adults from different walks of life without the loss of a parent. Nonetheless, though, I must admit I didn't really actually consider the idea until now, when I too am sick.

And so, being sick we've very literally had to ask people to volunteer for play dates. These people have been carefully selected (beggars can be choosers!). They must be people that Nia is comfortable with, they must be people who share similar parenting/discipline beliefs as Joe and I -- and if we are on different pages when it comes to discipline, they have to be people whom I know won't do anything with Nia I wouldn't approve of. They have to be people that can offer Nia a safe environment to play, explore, cry, be angry, talk, etc. She's working through a lot, my little one, and I want her to be with men and women who can nurture her. See? A Council of Stand-in Moms and Dads.

We may be born to or raised by one "mother" and/or one "father" but the truth is, we all have many mothers ad fathers. But especially mothers. We all have been touched by and influenced by many women, other than the one that we called Mom. I have many mothers and I'm delighted that Nia will, too, through my friends, her friends' mothers, teachers, neighbors, aunts, and her grandmother.

Parenting with Cancer Rule: Select Your Council of Mothers & Fathers

In this extraordinary time of need Nia's Council members (whether they realize it or not) have stepped up:

~ Extended family (George, Anna & Sean, Dale)

~ Nia's Friend's Parents (Zoe, Jackson, Maya, Izzy, Irene for now with new friendships to develop)

~ My Pre-Nia Friends (With & Without Kids)

It's the pre-Nia friends contingent on this list I'm most surprised by and excited about nurturing Nia in this time -- and setting the stage to be her Council of Mothers in the many years and challenges of her life to come.

These are my girls: Megan ~ lives in San Francisco, no kids yet, friends since kindergarten; Michelle ~ lives in Los Gatos, 3 kids, friends since 7th grade, past roommate, current colleague; and Erin ~ lives in Moss Landing, no kids yet, friends since college, past roommate.

These three amazing women have lifted me up time and time again over the years. Lifted me up, dried my tears, and made me laugh like no one else can. We've talked about absolutely everything and experienced a whole lot of life together, too.

And now, when I face the biggest challenge of my life, here they are again. Lifting me up. Drying my tears. Making me laugh. But this time around it isn't just me. Now there is Nia, and they are doing the same for her in a gentle, subtle way. Distracting her. Making her laugh. Listening when she needs to share. Playing tag and chase when she just needs to burn off some energy. Cooking with her.

I'd like to think that had I not become sick, I would have thought to urge my pre-Nia friends to spend time with Nia one-on-one, but I don't know if I would have. Being sick has made this a necessity: I need to rest and in order to do so, I need to know that Nia is occupied. Also, Nia hates to see me napping so it is essential that someone play with her. But it is more than that. They are stepping in when I have to step out. Isn't that the most basic definition of true, lasting friendship? Stepping in and providing her with all that a mother does: Love, compassion, understanding, joy, redirection... I couldn't have hoped for a better group of women to be me when I can't be.

Thank you to all the Council members! This is no small thing. We will be forever grateful to you for your help now -- and I truly hope that as Nia grows even after the cancer is a distant memory, if she ever needs a fresh perspective, she'll feel comfortable turning to another "mother" or "father" for support.

Treatment Journal: Week 4

When you're going through chemo, conventional time stops. No longer does the calendar run Monday thru Sunday. Now it runs Treatment Day to Treatment Day, and the individual days no longer revolve around work & childcare, dinner prep & clean-up, bathtime & bedtime stories. Now, the day orbits around around the nap, the shower, the playdate, the dinner drop-off -- if you're very lucky, a Netflix or two, a blog post, a few paragraphs read in a novel...

~~ Journey to Cancer-Free: Treatment Journal Week 4 ~~

Treatment Day: Taxol, Herceptin chemotherapy. Chemo Buddy: Michelle. Read: Real Simple. Ate: Broth, crackers, almonds & raisins, apple, nori. Water: 4 bottles. Bathroom trips while hooked up to the IV: 4. Time at the doctor's office: 5 hours. Learn that the tumor is shrinking! After midnight, I take an anti-anxiety pill to combat steroidy high and get to sleep.

Day 1 post-treatment: Temp: 98.3. Slept 4 1/2 hours. Up alone for several hours, I do a little yoga & weights and spend a few hours working. Playdate canceled, but feeling steroidy enough to skip the nap and hang with Nia. We walk to church parking lot so she can ride her bike. Joe works late; Nia and I do a dinner picnic on the front deck: A friend surprises us with veggie sushi take-out. Detoxing, I drink 100+ ounces of water.

Day 2 post-treatment: Temp: 97.9. Slept better. Make whole wheat strawberry muffins using left over oatmeal. Read 2 versions of Stone Soup to Nia and then cat nap in the sun while she makes her own stone soup. Forget to put on a hat and sunburn my part line. (Later, I'll slather on sunscreen 4 different times.) In the evening, Nia goes with Pam to the Dance Week festivities downtown and comes home around 10p. Joe & I watch baseball. Later, amped up, Nia is up till midnight. Finally she falls asleep with a lavender oil foot massage. I have a headache & heartburn.

Day 3 post-treatment: Temp: 98.5. To remind me that my body was pumped full of chemicals, my face breaks out in zits. My nose is dry and bleeds. The headache lingers. Walk in the morning with friends, then check out a preschool with Joe & Nia in the afternoon. At the preschool, I become exhausted; fantasize about laying down in the doll bed. In my own bed, I sleep almost immediately for an hour and a half before dinner. Out-of-town family arrives with their dog. Nia is occupied. Slight nausea. Watched "The Break-Up" in bed till sleep arrived.

Day 4 post-treatment: Temp: 97.3. Refreshed (and strangely full of energy), wake up and do yoga & weights. Buy 2 wigs online. Nia wakes up at 9:30a (got to get this kid on an earlier schedule!). Yogurt & pancakes for Nia & Tiger, fried egg & broccoli for me. Earth Day is hot at 10a. Handfuls of hair come out in the shower. I think of the young woman in the Chemo Lounge who told me she didn't shower for 5 days because she knew it would all come out, and her wig hadn't arrived yet. I can't stand the thought of all this dead, loose hair on my head. I shower almost compulsively. In the afternoon, I sip lemonade in the breezy backyard with an old friend, and later a new friend comes by to give me a massage. And I think: Maybe I can do this chemo thing afterall...

Day 5 post-treatment: Temp: 97.6. Foggy morning; I wake up sore-throat-ish. Joe leaves for a long work day. Recording my temperature in my little log, it occurs to me that I've crossed the hump in the treatment week. This week went way better than last week! While Nia sleeps in, I read an article in the NY Times about pillow fort construction basics and a food blog post about homemade cheese crackers. I start to daydream about our upcoming Escape from Cancerland... I take Nia and Tiger to the Farmers' Market and sit while while Nia writes her own name on the wait list and then waits through 7 kids for her turn at the face paint. Later, I listen to Mike Birbiglia and Joss Whedon on This American Life and it is like a mini vacation.

Day 6 post-treatment: Temp: 98.1. Neupogen Day. Nia crawls into bed next to me at 5:30a and I'm wide awake. Scalp prickling, I have to get up because it seems like the pillow is covered in loose hair. Later I see Kalli Cat sleeping on my pillow. Maybe it wasn't my hair that was tickling my nose. At the doctor's office I get the horrible (read: painful) Neupogen shot even though my WBC levels are ok. No guarantee they'd be ok come treatment day, the doc says. Running 45 minutes behind schedule with a waiting room overflowing with patients -- my arm pays the price when he is rushed. I nap till Joe leaves for work; before dinner, Nia and I plant wildflower seeds to be seen from the window.

Day 7 post-treatment: Temp: 97.6. Escape from Cancerland Day! Only it isn't as escape-y as I'd like. Sore throat-ish, runny nose-ish, tired. Nia goes to a morning dance class with Pam and I have a distracting visit and walk with an old friend and a brand new baby-friend. Highlight: my new wigs arrive. One is pink, the other is teal. In the afternoon, when I'm nap-ish, Nia cries on my lap and asks, If you don't rest, will you die? I try to explain, but she is sad and says she wishes I didn't have cancer. Pam takes her to the Natural History Museum. When they return, Nia and I build a sheet-and-pillow fort, the likes of which our house has never seen: it takes up the whole living room. She hugs me repeatedly and tells me how happy she is. My heart sings. Escape from Cancerland achieved.

Day 8 post-treatment: Treatment Day; re-set the calendar.

What We're Reading Now

It's not always easy to pick a winner when it comes to childrens books. Some are just plain boring, others are inane. And then there are some that I think will be great, but they don't hold Nia's interest at all. Other times, it turns out she's not mature enough. Two such titles in the latter category: Hans Christian Anderson's The Little Mermaid and Margery Williams' The Velveteen Rabbit. Both started out really well with lots of enthusiasm from Nia and myself (both were finely written and a pleasure to read aloud). But before long, with tears in her eyes, Nia said, "I'm not old enough for this book yet."

In The Little Mermaid, it was because of the wicked witch who grants the little mermaid's wish for legs -- the price for those legs was pain each time she walked, death if the prince didn't love her in return, and also the witch took her voice. The loss of the little mermaid's voice was the most upsetting to Nia.

In The Velveteen Rabbit, the part that disturbed her was the notion that stuffed animals can be loved so much that they become shabby and their whiskers may fall off and their button eyes may loose their shine and their bodies may loose their shape. This made her really cry. Oops! Ok, we'll come back to those.

So, here's what we are reading successfully. It's not all cancer books around here anymore, though it's still a mix of picture books and (age-appropriate) novels. We do the picture books during the day, but at night I prefer the chapter books with fewer pictures (I find that pictures are stimulating and, let's be honest, part of the idea of bedtime reading is to lull them to sleep, right?).

So for bedtime, we've been reading the Poppy series by Avi. Pam stared the series with Nia by reading Poppy and Ragweed. Then I read Poppy & Rye and Ereth's Birthday. Now we are in the midst of Poppy Returns, with one more book to go, Poppy & Ereth. Although Ragweed is technically the start of the series, it was recommended to us to start with Poppy and to lightly edit the second page (in which the character Ragweed is killed by the story's villian, an owl named Mr. Ocax). I like the series because Poppy the mouse is a wonderfully clever and creative heroine who is always helping others out of scrapes, first as a teenage mouse and later as a mother, and the stories gently bring up issues of friendship, family, death, & survival.

They are illustrated very well, but the illustrations are not on every page, so Nia can lay back and listen and begin the creative process of picturing the story in her head (or drifting off to sleep!). (Though I should add, I do understand it is an important pre-reading skill to be able to link the words to the pictures, too.)

We recently read another short-novel series of books that begins with Toys Go Out by Emily Jenkins. This one is about a collection of toys and their adventures when the people of the house are away. The toys -- a stuffed buffalo, a stuffed sting ray and a rubber ball -- grapple with issues of friendship, problem-solving, loyalty, making new friends, and overcoming fears. Like the Poppy books, this series is lightly illustrated with only one or two pictures per chapter.

A few months ago, Nia started asking lots of questions about how babies were made and where they grow and how they are born. After fumbling our way through some pretty awkward explainations, Joe brought home this book from the libary:

It's Not the Stork is a well-done book, touching on all the topics Nia was asking about without too much information that might scare her. But the authors also don't shy away from the anatomy and the book does talk very simply about "a special kind of loving called sex."

I like that the book mentions that some babies are born at home with a midwife, and it talks about both bottle-feeding and breastfeeding.

Other books we're enjoying include the Little House series that is designed for preschoolers and young readers, My First Little House Books, adapted from Laura Ingalls Wilder's books. Beautiful, simple, feel-good stories of 2 little girls and their infant sister growing up long ago, first in the Big Woods and later on the Prairie. I love the full-page illustrations in these books.

And we are also enjoying several versions of the Stone Soup folktale. I think this one is Joe's favorite; he and Nia have read it each night this week:

PS. After I wrote this post, Joe came home from the library with two more stone soup books! He's on to something with this stone soup repetition. The kindergarten teacher Steve Spitalny once told me at a workshop that you know a book or story has struck a chord when the child starts acting out the story in their play. He tells the same story to his kindergartners each day for weeks at a time! This week, Nia's been making stone soup in her kitchen.  

 

 

Working With Cancer

There was a time when math was one of the only things that could shut off the anxiety in my mind and take all my concentration. It was the fall of 1994. On a sunny, warm evening in September I was in a car crash that left my body virtually unscathed but emotionally totaled me. I was a student at West Valley College then and dropped all my classes except for the math class, which was a surprise because before the accident I was terrible at math. And now, again, I'm terrible at math. But during that window of time when time stopped and I was trying to get over the accident -- at that time, math was my savior. I liked that there was a definite answer. The numbers were calming.

When I was diagnosed with cancer, I wondered if I'd find the same kind of solace in my work as a conference producer. In some ways I have, but it is different now. Now I find distraction and solace in my conversations with friends, in Joe's embrace, and loosing myself in play with Nia. It nags at the back of my mind that I want to spend my time with these people whom I love, and who love me. I don't want to look back and wish I'd been more present.

But sometimes, knocking things off a to-do list, or cleaning a messy bookshelf can be very therapeutic. I can't sit around all the time. Sometimes the compulsion to make something tidy is overwhelming. Yesterday I tackled Nia's art shelf in the kitchen and it was both relaxing and restorative. I took it slow. Listened to the radio. And selected with care each item that went back on the self. Once neat, my mind felt more orderly, too.

Work is often that way for me, too. Though "chemo brain" and the fog caused by some of the anti-nausea meds make work challenging at times. So I've been taking it slow. I'm still working, but there are days when I don't make it to the laptop. My out-of-office email responder mentions that I'm busy fighting cancer, and when I invite people to speak at my conferences, I mention the cancer. It is a little weird mixing the personal with the professional, but the last thing I want is for clients to think I'm just flaky when I don't return an email for 5 days. And for the most part all of them have been very understanding that I'm multi-tasking.

My bosses have been unbelievably supportive and my colleagues are the best I could hope for in a time like this. Besides being understanding and available to take up my tasks if I can't do them, many of them are also participating in a fund-raising run for women's cancers (I have my colleagues in New York, a friend in Oregon, and a friend in Sacramento all carrying my name over finish lines this spring -- how awesome is that?!).

I'm writing this post because many of you have asked if I'm still working through my Cancer Year. I am, but as you can see, it is very much on my own terms. I work when I can, and don't when I can't. My laptop travels around the house with me. Sometimes I'm on the couch, sometimes at the kitchen counter, other times I'm lying in bed. My little home office is frozen in time: the calendar still shows March (and probably will all year); I haven't worked at my desk since March 12th, when I was diagnosed... But this feels right: to work a little here and there. I have absolutely no work-related stress eating up my precious white blood cells!

And it feels really good to know that when this is all behind me and I'm cancer-free, I'll have my conference schedule and a team in New York waiting to welcome me back to full-time. (Thank you, guys, with all my heart!)

... this moment

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. Inspired by SouleMama. You can play, too!

Fierce Warrior Girl

"I think you should post this on your blog as one of those fierce warrior girl pics! You got a strong one there April! Seriously! Loved being with your beautiful family these past couple days." ~ Thanks, Sean!! Loved having you here.

Chemo Log: Taxol/Herceptin Treatment #4

 

Yesterday was my fourth infusion of Taxol and Herceptin. I was super lucky and had a "chemo buddy" with me today, my friend Michelle. We'd planned this in advance but it turned out to be especially well-timed since Joe woke up with a sore throat. He stayed home to get better and Michelle and I went to the Lounge. 

First they tested my white blood cells to see how the count was. Thanks to the booster on Sunday I wasn't worried. And the count came back high enough for treatment. I don't know if it would have been high enough without the booster -- they didn't check it before giving me the shot. 

Next we met with Dr. Y. He was concerned that my body has been having a rough time with the Taxol (WBC count low so soon in the process, lots of fatigue last week, headaches, constipation). He isn't sure I can go the distance, the full 12 weeks prescribed. So, he said not to be surprised if he switches me from Taxol to a similar drug, Taxotere, in the coming weeks. Often people switch to Taxotere if they develop an allergy to Taxol, or have neuropathy (nerve damage to finders and toes -- I haven't had any symptoms of this yet). Taxotere and Taxol are from the same family of medicines, and have essentially the same side-effects. Just some people handle one better than the other.

If/when I switch drugs, I'll continue on the schedule of 12 doses, though maybe it'll end up being 6 weeks of Taxol and 6 weeks of Taxotere. (Then another 3 doses of a different drug cocktail before surgery.)

Another change is that I'll get my weekly Neupogen booster on Mondays instead of Sundays. Dr. Y wanted to move it off the weekend for my sake, and for the sake of the on-call doctor. Having it Monday might mean we can test my WBC before I get the booster, too. On Sundays, the machine isn't running. Then I'll have my chemo treatments two days later, on Wednesdays. For the time being at least. So far I've done treatments on Fridays, Thursdays and Tuesdays. :) What I've learned: The chemo crowd in the Lounge on Fridays and Thursdays is very talkative and friendly. Tuesdays, not so much. I'm happy to see what the Wednesday regulars are like.

And, finally: I've saved the best news for last. MY TUMOR IS RESPONDING TO THE TREATMENT AND SHRINKING! Snoopy dance!! No scientific ultrasound was performed, but through touch I'd noticed this morning it was much smaller, then Joe had trouble finding it right away, and then Dr. Y, too, had to ask me where it was supposed to be! This is amazing considering a few weeks ago it was making my left breast visibly larger than the right side! It's working, it's working, it's working!! All this icky chemo and my cancer-fighting diet and my kick-ass spirit and all your support are causing my cancer to tuck tail and run! Yea!