by Debra Jarvis
Hey, I’m sure that you’ve got plenty goin’ on, but I jes wanted to throw something your way. If, after surgery, or whenever, you’d like to just get away (while folks always mean well, the sheer volume of calls, visitors, even flower deliveries to the front door can be a pain), we’d love to offer up our island house for some “rehab” as needed.You’d be secluded as hell, just the two of you, the water, the whales, the eagles, and Mother Nature. Ooh-la-la! Holler anytime, for anything.
His message was simple, caring, and straightforward—here’s what I can offer you and call for anything.
The one from my boss still makes me weep because I find it so touching. Of course, he is a trained chaplain.
I hope you are staying on top of the pain with pain meds and that each day is better. I have heard that one of the patients commented how touched she was by your phone call. You are incredible. I am grateful for how much your relationships with patients mean to you (and to them). I write this while also hoping you will take very good care of yourself. You are so important to me, as well as to all of us. I suspect this is much tougher than you are telling. My heart and prayers are with you. May your heart be comforted in all the areas that it hurts and worries; may your wounds heal thoroughly and timely; may you know invigorating health; may you know how loved you are; may the love of your life,Wes, know peace, comfort, and strength; may you celebrate with great joy each healing phase.
Missing you,
Stephen
What I love about his message is that it is personal (he knows that Wes is the love of my life, and that I tend to minimize things), complimentary (he calls me ‘incredible’), and caring (may your wounds heal thoroughly).
I was forced to leave work in an untimely manner, and as I sat home popping pain pills, I knew that life at the SCCA was going on as usual. I wondered if anyone missed me. It’s a childish fear born out of insecurity, but as I said before, one tends to regress with a serious illness. But that’s why the line, “You are so important to me as well as to all of us,” made me cry. It was just what I needed to hear, that I wasn’t forgotten and that I was missed.
During this regressive period, I also developed a craving (more than usual) for compliments and praise. I wasn’t at work, where I got a sense of personal gratification every day.The only thing I was doing while I was home was writing updates. So when I received this message from my friend Teresa, I lapped it up.
So I was sitting here (okay, sprawled) contemplating eating the three Häagen-Dazs ice cream bars in the freezer, when I decided to check on my e-mail.To my delight, Debra, your e-mail was shining in my inbox. Yes, shining. All the other pathetic little messages hung their fonts in shame. How, after major surgery no less, can you manage to write something so warm, clever, and inspiring? Hell, I had a difficult conference call, and I’m ready to go for a “lactose overdose” courtesy of Vanilla Almond on a Stick. I apparently have to teach you how to whine and complain. Once you master that, I’ll introduce you to my friends in the freezer—Ben and Jerry. Thanks so much for the update. I will continue to keep you and Wes in my prayers.
Even if she hadn’t praised my writing, her message was hilarious. But she didn’t kill herself trying to be funny.
I say write as if you are actually talking to the person—like this message from my friend Michele whose husband was dealing with prostate cancer:
Listen baby,
It is a shitty card to be dealt no matter how you go at it. And that Wes, I am smokin’ up prayers for that boy. I think I know his anxiety and fear. But there are a cascade of blessings amidst a shit-load of pain, fear, suffering, and dread. I have found it to have changed basically everything.Too much to talk about.Through our experience, Chuck and I are closer than ever, closer to our true selves, able to pray together and help each other in ways we couldn’t have imagined. I love you both, even from a distance of space and time.We are holding you close.
She acknowledges the pain of diagnosis and surgery, etc., shares that she got through it, points out that there are blessings to be found, and then gives an example about being closer to her husband. She tells me she loves us and is praying for us. This is huge.You cannot underestimate the power of telling people that you love them and pray for them.
She talks a little bit about Chuck, but she doesn’t go on and on, and believe me she could have because they had their own crappy cancer circus going on. She would be an excellent chaplain because she shares about herself from her heart, but keeps the focus on the other person.
Sending a Bible verse or two about how God is always present or how we can’t be separated from the love of God is nice. But nix the pages of scripture in the King James filled with verses about our “present sufferings”; the creation and the spirit groaning (all I could think was, “Where are the pain meds?”); and trouble, hardship, persecution, famine, nakedness, danger, and swords. Did I mention glorification and justification and how we are considered as sheep to be slaughtered? When you’re fresh out of surgery, you’re already feeling a little slaughtered.The last image you want to carry around in your mind is a bloody sheep.
My best friend from junior high sent me a wonderful message with a list of well-known women who have been breast cancer survivors for years. This was encouraging. If you know women who have died of breast cancer—just keep that to yourself.
Finally, an e-mail message that just made me smile. It’s from a young man whose wedding I officiated.
A. You inspire the crap out of me.
B. You are an amazing writer.
C. You touch me with your experiences and make me realize that tough stuff is, not only doable, but required for a full life.Thanks for reminding me. Keep on truckin’ Rev. You are truly one in a million.
Much love,
Ian Walker
So in case you get constipated, keep reading, and I’ll inspire the crap out of you.
Missing the Point
I was able to check my work e-mail from home, and I was sad to receive a message that one of my favorite patients, Ted Christos, had died. He was a seventy-five-year-old Greek Orthodox man. We would get into long conversations about the Orthodox liturgy and why they didn’t ordain women. “It’s just wrong,” he said. I didn’t pursue that line of conversation because I knew it would be fruitless.
But he was thrilled that I had taken several classes with a Greek Orthodox priest, and the classes were actually held in an Orthodox church. He was even more thrilled to find out that I had done a weekend retreat with the church and learned how to paint an icon. I brought it in for him to see. It was of Christ the teacher where Jesus is holding a book in one hand and holding up the other in a blessing pose. Ted liked it very much but had one criticism.
“Good, but the eyes of Jesus are too big.”
“The eyes of Jesus—what a great title for a book!”
He laughed and then said, “I’m writing a book.”
“You are? What’s it about?”
He told me how he was writing a children’s book for his granddaughter.
“Maybe you would look at it? Help me get it published?”
“Sure!” I said. I was excited. Maybe it could be published before he died. His prognosis was not good. He had metastatic gastric cancer. The next week he brought in a fifty-page manuscript.
“It’s about a crow,” he said thrusting an envelope at me. A crow—how cute! I couldn’t wait to read it.
That night I opened it up and began reading. It began with a crow flying onto the bedroom windowsill of a young girl (presumably his granddaughter) as she is staring out the window and not doing her homework.
I got out my red pen. That was my fatal mistake. I spent over two hours correcting spelling and grammar and pointing out erratic change in verb tense. The young girl was speaking like a college student.The crow was getting annoying.The whole thing was preachy, and a lot of it was boring. But I could help him. I made arrows to indicate paragraph moves and wrote suggestions and questions in the margins. I
cut out entire paragraphs. I sat back satisfied. I couldn’t wait to see him.
He returned the following week for his chemo. I sat on the rolling stool next to his wheelchair and began my critique. I got to about page five and was saying, “See, all of a sudden you have the crow speaking with a British accent and using all these Cockney expressions—” He hadn’t said anything so I turned to him. The look on his face was hatred, revulsion, loathing, disgust.
“Ted! What?”
He snatched the manuscript out of my hands and said, “I’m tired and want to take a little nap now. Thank you.”
I felt as if someone had just dropped an anvil on my head. How could I have been so stupid? He didn’t want criticism, he wanted approval. He never again spoke to me after that day. Every time I peeked in his room, he would pretend he was sleeping.
I sent him a little card apologizing and told him I missed talking with him. He didn’t care.
I had wanted to do something uplifting for him, and it was as if I had crushed him.
Family Herstory
My sister, Lynie, was supposed to be here for my surgery, but the day before she was to fly out, her son had appendicitis.When that happened we started thinking maybe there was a plague upon our house, what with my mom and me and then my nephew. But as I’ve said before, shit happens.
Lynie is two years younger than me and up until two weeks before, had no family history of breast cancer. Now suddenly she had a major one. My mom and Lynie and I are all members of the Dense Breast Society, also known as the Sack of Rocks Club. Our mammograms are hard to read. We have cysts and benign fibrous tumors. I started getting yearly mammograms in my thirties because I had so many lumps.
Lynie is very calm about these things and assured me that as soon as she got home she was going to talk to her doctor about her new history. I was happy about this since I felt this irrational guilt about providing her a risk factor for breast cancer.
I wanted my sister with me, because, well, she’s my sister.Who I am is tied up in our shared history, especially the history of our bodies. I knew she had a heart murmur when she was a toddler. She knew I had a big tumor when I was a little baby. I was the first person she told when she started her period. She was the only person I told when I sunburned my breasts by lying topless at the beach.
It turned out that it was just as well that she came a couple weeks after my surgery, because by that time, I was a little more mobile. I was already up to walking three miles a day, and I really wanted her to meet Max.
I don’t want to be coy or cute about this, so right up front I want you to know that Max is a dog—a wheat-colored cairn terrier—Toto from The Wizard of Oz.
Before I started chemo, I went to see a naturopath who told me that if I walked briskly for forty-five minutes a day, it would help me get through chemotherapy. It was on my first brisk walk that I met Max.
The woman holding his leash that day was walking toward Wes and me. Max saw us and leaped ecstatically toward us, his leash making a diagonal line across the street. He looked up at me with a look that said, “At last! I’ve found you! Yes, you. You’re the one I’ve been waiting for.” I carefully bent down to pet him and he gave my face a thorough licking.
I said to the woman, “Oh, my God, I love him.”
“Really?” she asked, laughing. “Do you want him?”
My eyes widened. “Yes!” Wes looked shocked and later told me he thought it was the pain meds talking.
It turned out that Max lived across the street from this woman, Amy. She walked him every day because his owner never did.“He is married with two small children. Max is out in the front yard twenty-four/seven, and the guy just doesn’t have time for him.”
I was horrified. Why would anyone keep this fabulous dog outside all the time? Why not just get a goat?
“You can go over and play with him any time,” Amy said. “That’s what everyone in the neighborhood does. He’s always out there. I’ll ask his owner if he wants to give him away.”
So Max was the reason that I would haul myself out of bed every morning for my walk. I would call out his name from three houses down and then watch his head go up and down behind the fence as if he were on a pogo stick.
I mostly threw a tennis ball for him. Although I wanted to, I didn’t get too affectionate with him. I was healing from my surgery, and the thought of him jumping on my incision made my skin crawl.
Lynie is something of a dog expert, so as soon as she dropped her bags, I suggested we go for a brisk walk—to meet Max.
Of course she loved him. She played with him, threw the ball, scratched his belly, watched him run around, and then said, “I don’t think you would be running into any big problems with this little dog.”
The sisterly seal of approval. I was thrilled. Now I just had to wait for Amy to ask Max’s owner if he wanted to give him away.
The next day Lynie, Wes, and I went to my first appointment with my oncologist. She is very smart, talks very fast, and loves, loves, loves statistics. If she told the story of the three bears it would go something like this:
“Some time between the years 1200 and 1400, a female between the ages of 8 and 11 with a probable mortality rate of 43 percent, was walking through a forest, which was 74 percent old growth timber, 11 percent new growth, and 15 percent undetermined, when she came upon a 300-square-foot cottage, which in the price range of that time was worth approximately one year’s crop of wheat and a cow. Upon seeing three bowls on the table of varying sizes, she had a 33⅓ percent chance of finding one that she would deem suitable for her purposes, where N=3, the p value is less than .01, with a mean of 2.64.”
You can see she must have no problem putting her son to sleep.
So she gave us all the information and all the statistics. And like a mother bird that eats, digests, then throws-up for her chicks, Wes took in the data and fed it back to me in a palatable form.
The choice was basically no chemo and tamoxifen, or, to get a few more percentage points of insurance against recurrence, I could have chemo plus tamoxifen. My rationale for choosing chemo was that I didn’t want to have a recurrence five years down the line and say,“Dagnabit! I should have done the chemo.” But of course I’d never say, “Dagnabit.”
“And you won’t lose all your hair, but you’ll lose some.”
Ah, yes, the hair. That’s one of the first things people asked me about when I told them I had breast cancer.
“Will you lose your hair?”
Some people just assumed I would. “There goes the hair,” an acquaintance said, trying to be light and funny. Her hair was fine and thin and split on the ends.
I looked at her and thought, “You’d love for me to lose my hair.” As you can see, cancer was not always bringing out the best in me.
I mean, it’s true, especially for women, that when you lose your hair, you lose part of your identity. It seems unfair that on top of getting cancer you lose your hair. However, like losing your breasts, for some women it’s a bigger deal than for others.
But the thing is, it’s not really about the hair. It’s really about death. People die from cancer all the time. But it’s so impolite to say, “Will you lose your life?” It’s much easier to ask about the hair.
Because if you don’t lose your hair, you can almost pretend that you don’t have cancer. Sure, you may be tired and nauseated. Your surgery site may hurt. You may have sores in your mouth. Your fingernails may be falling off and getting infected. But these are not things that people notice immediately or at all.
No one can look at you and say, “Chemo patient.” And if you have a sure hand with makeup, you can look downright healthy if you haven’t lost your hair.
But if you go bald, you are marked. You can’t pretend that everything is normal and that you don’t think about death. It’s hard for others to pretend they don’t think about death when they look at you.
Your bald head shoves death in their faces. And most people really hate think
ing about dying. So they struggle to ask the right questions. Is asking, “What’s your prognosis?” too nosey? The answer to that could just lead to more awkwardness. It’s safer to talk about hair.
But here’s the good thing about losing your hair: you can’t pretend that everything is normal. One woman who had just lost her hair to chemo said to me, “I had chemo for three years and never lost my hair. My family acted as if nothing was wrong. Where are my jeans? Did you call the travel agent? What’s for dinner? But now, my God, they’re freaking out and they’re falling over themselves to help me.”
Another patient told me that she wished she had lost her hair so everyone would stop saying how good she looked. She wanted to scream, “But I feel crappy! The outside doesn’t match the inside!” But that’s often how it is for healthy people, too.You can look great and be miserable.