The sequel to "Crossing the Chemo Room" shows what happened to the stories Lonna began--Who lived? Who died? Who had a bone marrow transplant? How did Lonna cope with surviving cancer, the effects of chemotherapy, and the loss of friends?
"Moon" also shows the ongoing adventures of Lonna and her family as they battle doctors, homeschool, evacuate from their burning mountain home, and travel to New Zealand each summer (winter) as their children ski the South Island mountains.
Lonna Williams' Homepage
I never wanted to write this book. I never wanted to write Crossing the Chemo Room. I didn’t care about becoming an expert in anything serious--especially not in an alcoholic childhood, where I was the only one in my family to survive. I didn’t want to grow up and learn about divorce, cancer, or miscarriages. I didn’t need to know what the words “non-hogkins lymphoma, diffuse cell, intermediate grade” meant.
I prefer fantasy stories and fairy tales. I’ve been writing those since I was a child--creating amazing new worlds. Nonfiction isn’t nearly as much fun as describing slimy gray creatures that lurk in cavepools and wait to jump out at torchbearers who disturb their sleep.
With nonfiction I’ve got to tell about my own life. I’ve got to be accurate and do research. And I’ve got to share my emotions, pouring part of myself into the words. Sometimes I feel that, if I wrote with a pen, the ink would be my own red blood.
“I can’t do this, God,” I complain when I’m balancing family, housework, homeschool, church, email, website, Internet links, a part-time job at the local paper, and writing my books. “I feel like my nose is glued to the computer screen, and all these facts are bouncing through my head. Surely you could find someone else to write interviews and nonfiction cancer survival stories. Just let me stick to fantasy.”
But in my heart I hear the answer,
“I’ve called you to write your own true story.”
I don’t always like that answer, and out of frustration I go to The Tolkien Forum (www.thetolkienforum.com), where I’m a member of The Writer’s Guild, and post this on my favorite place, The Prancing Pony’s Poetry section:
If I had time for poetry
I’d write a line or two
But since I got that newspaper job
My head is full of pooh.
Then I realize that I did manage to write a silly little poem, and I’ve been thinking about my next fantasy novel. I fall asleep imagining horses that fly over snowy mountains.
The moon wakes me up at midnight, slanting into my window that overlooks the forest. Edd, who has been working hard teaching summer school, snores a little on his side. I slip out of bed and notice how the moonlight touches the new mahogany desk Edd bought me, coating the red wood with a thin plane of white light. The moonlight coats the black laptop and the chair I sit at, and the carpet by my feet. I step out into the plane of moonlight, and it covers my aching, nerve-damaged feet with a silvery beauty for those few seconds that I stand there.
And I look out the window, at the moon shining through the cedar trees, caught partly in their branches, forming patterns on the forest zones of boughs and treetrunks and smaller oaks and manzanitas and uneven ground. The moon touches the stone steps leading up our slope to a path and a single bench by the streambed.
And I think, there is a kind of strange, fantastic beauty in nonfiction.
So I continue to write, drawing from my many journals that I keep on my computer, getting inspiration from God, family, friends, The Internet, music, films, art, books, and--of course--my favorite book, the one that glows in the margins, that has real, life-changing words of power, that brought me through cancer and chemotherapy and countless needles and medical tests: my old blue Bible with its rather worn, silver-edged pages.
And I learn more than I ever wanted to about marketing and book promotion. I’ve been to a lot of writers’ conferences. I even went to the biggest, most prestigious one in Maui. I’ve conferred with big-time editors and literary agents, who seemed surprised at my body of writing--that I bounce back and forth from science fiction and fantasy to cancer survival stories.
A literary agent at one of these conferences once told me,
“No one will want to read about cancer. It’s too depressing.”
I sat across the table from him, tears forming in my eyes. I was newly pregnant with what would shortly become my third miscarriage.
“Well, I think you’re wrong,” I replied in wavering words.
And so he was. My book Crossing the Chemo Room has been read by many cancer patients and their friends and family. I get emails from people all over the world. When I go to buy iced tea at Rite Aid, strangers start up conversations with me about cancer and ask for my book. People who face something like cancer want to see a roadmap through it--drawn by one who has made the journey and survived.
And since my story continues, I will share it with you.
It has been seven years since I finished my chemotherapy treatments. My son Jonathan had his eighth birthday last week. He looks like Frodo from The Lord of the Rings, his wild curly hair and startling blue eyes hobbit-like. His face is almost too beautiful for a boy’s, and people often say to me, “He should be a movie star or a model.” I reply that I moved to the mountains for a reason, and I don’t plan to drive for hours, through traffic, to smoggy Los Angeles.
Sometimes Jonathan tells me he wants to be an actor. He makes me print out the photo of him dressed in his Frodo costume, complete with a maroon vest, green cape, and a simple gold ring hanging from a chain (he won Best Costume at the ice skating rink’s contest last fall). He practices signing his autograph. “Frodo” he spells in shaky handwriting across his photograph.
A few minutes later Jonathan insists he’ll be a scientist, and he beams from ear to ear as he wears the safety glasses Dad bought for his birthday and examines the glass chemistry set I ordered from Edmund Scientifics. He carries The Periodic Table of Elements chart around as if he knows what all those symbols mean. Once he put a strong magnet next to a Halogen lamp, so that the computer and lamp and fan went off in a big flash as a house fuse blew.
So sometimes we call him Little Frodo, and other times he’s Little Mr. Einstein.
He’s been taking piano lessons from Andrea Smith whose father Steve has been a music minister for years. Jonathan can read music or “play by ear.” When he plays Dad’s fancy new keyboard with its variety of sound effects, his hair bounces as he pounds the notes, and he makes up his own songs key by key. Then we call him Little Mozart.
Seven years ago we put him in his bright yellow and blue stroller and pushed him to the back of our valley property, to take our family photo under eucalyptus trees. I wore my short blonde wig, my cheeks still chubby from Prednisone and my face pale.
In that photo, my daughter Jessica was not yet four. Now she is almost eleven, tall for her age, athletic. Her reddish braid dangles past her bottom, and her auburn eyebrows arch expressively over light blue eyes, bird-like, as she tilts her head to kiss her pet parrot whose bright green feathers fan Jessie’s cheek--the one with a birthmark shaped like a baby’s hand. Jess understands birds, and she wants to be a bird trainer when she grows up. She teaches Penny how to speak and do tricks, then sits for hours at her roll-top desk, carefully drawing bird pictures with her colored pencils:
Jessica can walk outside and tell what each songbird sings.
My older children, Kristen and Ryan, are in their early twenties now. Kristen is getting married soon--to a quiet Christian carpenter she met on a mission trip to Mexico (they built houses together for three months). Kristen has her Vocational Nurse’s license and works for a big Hospice company in San Diego. She still has long, straight blonde hair, fair blue eyes, and an impish smile. She’s great at dressing up in green capes and telling stories in an English accent.
Her brother Ryan, who lifeguards part time and keeps his curly brown hair short, has a dark tan and freckles. He’s tall, easy-going, and kind--a good sport with his mom and younger siblings. Never good at keeping quiet, he can say sudden, clever things that surprise most people. He’s finishing up his Associate’s degree at a junior college and has his Auto Mechanic’s certificate. He works for a dealership in San Diego and tries not to let car hoods fall on his neck. He goes to church with his sister and still wonders what plans God has for his life.
We drive down to San Diego to visit Kristen and Ryan, or they journey up the mountain to see us for the weekend.
My husband Edd is a little older but still has his full red beard, blue-green eyes, and bushy brows. He’s leading worship music at our local mountain church and teaching college English in the valley. He plays one of his several guitars or his keyboard and sings from the upstairs level of our home, the sound echoing through the evening forest.
He and the children journeyed with me through these past seven years. Part of our journey covered pregnancy loss.
At least forty percent of all pregnancies end in miscarriage, many even before the woman realizes she was pregnant. Way too many end after she gets the good news, tells everyone, and then arrives bleeding in the emergency room. What do you do when your close friend just found out she’s having twins next June, and your own June baby will not even make it past the end of October?
I’ve had five miscarriages now. I’m an expert. So I sit at my new desk. In between sentences, I stare out the window at the sunlit forest.
Our three-storey mountain house rises into that forest, looking small against the silver Canadian firs and Ponderosa pines that tower above it. It has wood paneling and high windows, decks and fireplaces, and a computer room where we stuff the children’s homeschool materials--bookcases, computers, CDs, field guides, rock and feather collections, binoculars, microscopes, solar energy kits, Renoir prints of mothers and babies . . .
I think of Edd, Jessica, and Jonathan as I sit here and type. They lost five babies too. This last time, almost 2 years ago, Jessica and Jonathan seemed so excited to have a little brother or sister. When they heard the news about my pregnancy, they got out their baby dolls and started dressing them up. When they heard about the miscarriage, they put the dolls away and asked tough questions like:
“Why can’t I have a little brother or sister? Couldn’t you wait a while and see if the baby would live?”
How could I explain to a six-year-old that a six-week fetus can’t live outside its mother’s uterus?
I felt like a deflated balloon.
And how does Edd feel? He sat with me for five hours in the emergency room while they did blood tests, exams, and ultrasounds. When the E.R. doctor offered no hope of saving this fetus, Edd turned to me with pain in his eyes and said,
“I’m tired of this. Our last little hope has died.”
I could have had my tubes tied and spared myself miscarriages, even though my oncologist told me that I should be able to have more children after chemo if I didn’t go into early menopause instead. I could have learned more about joy and peace as I recovered from cancer and chemotherapy. I could have made a conscious choice to go on with my steady life--instead of riding a roller coaster. I could have avoided the thrill and anticipation of finding out I was pregnant followed by the disappointment and pain of losing yet another baby. It seemed as though, just when I was getting over a miscarriage and becoming strong and hopeful again, I got pregnant and had another miscarriage . . .
I have always done things the hard way.
Besides, I enjoy being pregnant--feeling life growing inside my body instead of cancer. I’m sure the desire to be pregnant had a lot to do with the cancer. I wanted something amazing to happen after that ordeal. I wanted all my dreams and longings for another child to mean something--to be fulfilled. And how could that possibly happen if I had my tubes tied?
“You’re brave,” my friend Ann told me once, while we were sitting at the ice rink and watching our children skate. She’s an OB-GYN, a baby doctor. She prayed with me before giving me a D & C the year of my fourth miscarriage.
“Brave?” I questioned. “Stupid is the word that comes to my mind.”
“Brave,” she repeated. “You put yourself in harm’s way, risking the possible pain, for a chance at joy. A lot of women, after they’ve had a miscarriage, stop trying to have a baby.”
“Well, after five times, you think I’d take a hint,” I replied bitterly. “I’ve got to stop expecting the impossible and get on with my life. I guess I’ll write a book about all this.”
“That’s a good idea. There’s not enough support out there for women who have miscarriages. I could help you do research,” she offered.
I stared at her for awhile, not wanting to write this book.
Long after the kids finished skating, Ann’s words remained in my mind. They reminded me of what another doctor once said a few months after I finished chemotherapy,
“You must be very brave to have gone through cancer.”
I smiled and said nothing though I felt like shouting,
“But I was scared most of the time!”
Maybe that old saying is true: bravery is not the absence of fear, but facing the thing that terrifies you.
So I write nonfiction, even though I’d rather be spinning another fantasy novel. I find myself weaving my stories through these past seven years, not always in the order they happened. The present mingles with the past and looks toward the future. I hope that my experiences will help someone: maybe even someone who hasn’t had alcoholic parents, cancer, or a miscarriage.
When I stand in line at the supermarket and hear someone complain about a broken fingernail, I can’t help but smile. I fight back the temptation to say, “I’m a cancer survivor. Here’s my card. You can check out my website and read all about it.”
My challenges in life have been big. I wish I could have worried only about my fingernails. But, despite everything, I’ve lived to tell the tale.
Up to the Mountains
I realize that this new book is not just about pregnancy loss. It is a continuation of my cancer survival story. Some people who read Crossing the Chemo Room said that they became so much a part of my world that they were disappointed when my story ended so abruptly. I finished it with a tale about Betty and the lump on her neck. I felt that lump, then looked over my shoulder at the mountains in the distance. I saw the wind blow between Betty and me and wondered if an angel moved in those winter leaves.
Since that night with Betty, over six years have passed. I am still cancer-free. I get to hike in the mountains where Edd moved us four years ago. We got tired of standing in the dusty, over-crowded valley and looking up with longing toward the distant, snow-covered peaks. We came up to the mountains on a vacation and, for fun, decided to look at houses. We ended up buying one. So Edd sacrificed himself to drive an hour each way to work five times a week, up and down mountain roads in snow, fog, rain, or rockslides--roads where several people a year drive off that steep edge and plummet thousands of feet to their deaths.
Edd gave me the mountains. Now the kids and I figure skate at the local rink, swim in the lake, and take long walks in the forest. We find coyotes, bobcats, and bears. Squirrels scamper through interlacing trees. Wildflowers dot the meadows with purple, yellow, and pink. Bees swarm in the lazy air. The setting sun lights up pine trees, all golden at first until the sun slants westward and the rays travel slowly up treetrunks toward the middle and higher branches until it illumines just the tops. Then it jumps off the trees, leaving pink and orange trails in the blue-green western sky. The trees become black against dark blue, until the stars appear--white against a black universe, hanging low and big and bright above us. We feel the cool wind blow down through treetops at the summit. We look over cliffsides toward the millions of lights in the cities below.
And though I am six thousand feet above those cities, I am still tied to them and the stories I left unfinished there.
“The Family on the Computer Screen”
As I recovered from cancer and chemotherapy, my hair started growing back, and my monthly periods resumed. I also felt all the usual post-cancer symptoms like depression, anxiety attacks, guilt for surviving when others do not, sleeplessness, and haunting dreams (what doctors call post-traumatic stress disorder). My symptoms got so bad that I thought something was wrong with my heart, and I ended up in the
emergency room and the cardiologist’s office. The echocardiogram showed my heart had not been damaged by the chemo.
I learned to reach out--in desperation--to the Internet and the bookstore for information. I called the American Cancer Society and spoke with an oncology nurse. And I joined a cancer support group.
One of my best sources of information was the National Cancer Institute website (http://cancer.nci.nih.gov). There I found helpful articles about the long-term effects of chemo--things an oncologist won’t necessarily tell you. One of the articles, called “Facing Forward: Life After Chemotherapy” listed the main long-term effects that I felt even six years after my treatments ended: fatigue, nerve damage, sleeplessness, and chronic pain.
I had been having a rough week. I was tired during the day, and I couldn’t sleep well at night. My feet especially hurt. Ibuprophin did nothing for the pain. Neither did plain Tylenol. My new general practitioner was unwilling to keep prescribing pain medicine, but I knew the pain was not in my mind. I needed to sleep so that I could function the next day as the mother of two active children.
I felt like The Little Mermaid from the original Hans Christian Anderson fairy tale. Unlike the Disney version, when this mermaid becomes human, she must pay a terrible price for her new legs. Each step she takes is agony, like walking on knife blades. She cannot speak to tell her pain. She cannot explain her love and sacrifice to the human prince for whom she left her ocean home. And then the ignorant prince doesn’t even pick her. She turns into sea foam at the end of the story, a kind of water angel to guard children from the threatening waves.
That is the price she paid to see a new world.
Tired of being in pain and not sleeping, I got up, went to the upstairs computer room, turned on my Macintosh computer, and searched the National Cancer Institute website until I found the “Facing Forward” article. It listed nerve damage as one of the effects of chemotherapy, and I suddenly realized why my feet hurt.
When I was finishing up my chemo treatments seven years ago, I told the oncology nurse about the numbness in my fingers and toes. To my surprise, she said that the damage was caused by the chemo and would be permanent.
As I stared at my glowing blue computer screen, I read that “neuropathy” is one of the leading causes of pain in post-chemo patients. Doctors, afraid that a patient will become tolerant of or addicted to pain medicine, often will not prescribe it. So the pain goes untreated.
Chemotherapy can even change how your mind works. You may have trouble focusing on a task or remembering things.
Why didn’t I know this before? How can the medical profession fill my veins with some of the strongest chemicals known to man and then abandon me when the treatments are done?
Photographs of cancer patients were spread throughout the article, along with these words:
"If I could get over the physical part, if it would stop hurting, I think I would be fine.”--Rose, lung cancer survivor, 70.
"I don't think you ever forget the fact that it is always possible for it to come back.”--Grant, leukemia survivor, 68.
"As long as I was in treatment, I was killing the cancer. [After treatment] I was waiting for the other shoe to fall."--Judy, breast and thyroid cancer survivor, 45.
"I found myself kind of going through the motions, through the treatments, through the doctor's appointments. I never really stopped to consider the emotional side of things. After I finally realized what I was dealing with, I didn't feel like I had the emotional support I needed."--Carmen, Hodgkin's disease survivor, 20.
"I went [to radiation treatment] every day, and they treated me, and we were like ... family. And now there's this instant separation."--Tom, prostate cancer survivor, 70.
"A process of assessing the 'values' of [my past life] took place. I did not want to stay in the 'sick' world, but my former world seemed so superficial."--Ronnie, colon cancer survivor, 62.
As I scrolled down on my Internet browser, I saw so many photos, so many stories. I stared at the faces on the screen: black or brown or white, male or female, old or young. Tears started pouring down my face as I sat there alone in the computer room at one in the morning.
I live with a loving family. Edd encourages me to write, do research, and help other cancer patients. Jonathan cuddles with me, comforting me somehow for all I’ve been through. Jessica makes me laugh at the things she says. But none of them have been through cancer, and neither have most of my friends. I haven’t gone to a cancer support group since we moved to the mountains.
This is my family, here, on the computer screen, I thought as I wept and touched the cold glass with my numb fingertip. The glass poured out light toward me, as if the lives in the photos touched me back.
I probably should join a cancer support group again. I could fit it into my busy schedule somehow. But sometimes the best support groups are the informal ones that happen through emails or when one cancer survivor visits another:
Doris Bowers is our mountain homeschool science teacher. In her sixties, she can still outhike a thirty-year-old fireman on mountain trails. She has known these mountains for over forty years. Go with her on a trip, and she will show you wonders. She will lead you past waterfalls and fern grottos and meadows filled with wildflowers. She will show you where the wild cougars roam through twilight and where the white egrets land on a mountain lake. She will lead you 12,000 feet to the Summit where nothing grows and snow nestles in the cracked gray granite.
Doris wears her whitish hair tied back in a black bow, a white- collared shirt, jeans, and boots. She is a naturalist, primarily a botanist, and her happiest times are leading a group of children through the forest, showing them gray lichen on treetrunks. She can teach oceanography, filling a classroom with seacreatures and ocean photos. She’s been to Mount Ararat in Turkey, looking for petrified seashells and Noah’s Ark. She studied archeology in Israel. She can conduct a real archeological dig, unearthing bits of pottery and glass bottles from the nineteenth century when loggers settled these mountains. I have a photo of her, kneeling in a mound of dirt, surrounded by children. She stares up at the camera, the sun lighting her face beneath her white Tilly hat.
Doris got breast cancer twenty years ago and survived that. Then, ten years ago, she found melanoma in her leg. She had surgery, and the doctors told her she would not hike a mile again. Undaunted, she left her backpack out in her living room for inspiration, and a year later she was climbing our local mountains. Recently, her melanoma has returned, and this time she had to go into the hospital for more surgery and strong chemotherapy.
I visited her in her mountain home not long after her last treatment. Her hair had thinned a little but not fallen out. She looked a little smaller and paler but still every bit the naturalist, sitting in her log cabin with its stone fireplace and wood mantel decked with photographs, books, and dried plants. Stacked around her were boxes of paperwork and projects: parts of an archeological dig to catalog, seeds to identify, insects to mount, and medical insurance bills to deal with.
For a moment I was a little girl again, sitting with my grandmother the college professor who surrounded herself with her research papers. I felt comforted, as if I had entered a quiet museum full of the familiar and the unexpected.
We talked in calm tones about her recent treatments and side effects and about my long-term struggles after chemo.
“I want to start teaching again,” Doris said, a wistful look in her blue eyes. “Just put me in front of a group of children, inside or outside, and I am happy. “
Doris never had a child of her own, but you could not tell by the way she relates with young people.
“I’d also like to hike again,” she continued, nodding toward her blue backpack that sat in the corner. “I make myself go out to work in my garden. When I was in the hospital, I could barely walk to the bathroom.”
“You’ll be hiking again,” I assured her. “Let me know when you’re going. I would love to hike with you in the mountains.”
We continued chatting. It was nice to relax and carry on an uninterrupted adult conversation while Jessica and Jonathan were at camp. When it was time for me to go pick them up, I followed Doris out to her yard. A clump of dried white flowers stood in a ceramic pot.
“Would you like to take these home?” she asked, pointing to the moon-shaped, translucent silver seed pods that dotted dried brown stalks. “These are called moon flowers or lunaria or silver dollar plant.”
“Sure,” I said, picking up part of the clump.
“I’ve been taking the brown seeds out of the seed pods,” she continued, going back to the house to fetch some for me. “You could plant them in your yard, and in two years you’ll have little purple flowers and then these moon pods.”
She put a few seeds into an envelope for me and held it out. I took it out of her hand as if receiving treasure.
“Thanks, Doris. We’re looking forward to hearing about the new science classes.”
“I’ll probably do ‘Trees’ first. I haven’t done that in a while.”
“Good. We can always learn about how to survive out in the wild, and I love trees. Jessica did really well in the science part of her S.A.T. test, especially biology. She wants to be a bird trainer. Jonathan wants to be an inventor. He has his little laboratory in our backyard, and he enjoys making potions.”
“I’d like to teach chemistry soon,” Doris remarks.
We look at each other for a moment as sunlight shines down through treebranches and onto our faces. We are both cancer survivors, bearing the scars but still very much alive.