It's Not About the Hair: And Other Certainties of Life & Cancer

by Debra Jarvis

  Mom

  Unlike me, my mother has seen cancer done only two ways, both of which resulted in profound wasting and death. She was too scared to be around either of these people, so she missed some of the gifts that can come from being with the terminally ill. She saw them newly diagnosed and then just before they died. So to her, cancer equals death—zero-to-sixty in ten seconds.

  I don’t think she really understood that cancer is not a death sentence. It’s more like a reminder notice—“Just a note to remind you that your time is limited.”

  I grew up hearing my mother explain death this way,“You die and then the worms eat you.”

  She had said this breezily in her thirties and forties, but when she started seeing people nearer her own age die, she stopped saying it at all.The Worm Theory is not that attractive to begin with, and is even less so when you apply it to yourself.

  When I was a child my mother declared herself an atheist. I have since heard her mention God, so I’m not so sure now. Although both her parents were Spanish, and most of her family was Catholic, she and her brothers and sister were not raised in the Church.That was one reason she didn’t believe in God.

  The other reason was my illness as an infant. My belly swelled up so that by the time I was nine months old, I looked pregnant. My pediatrician told my mother it was gas. It turned out to be a four-pound tumor attached to my liver. It was benign, but my mother was furious that this God she didn’t believe in could let an innocent baby get so sick. So then she really didn’t believe in God.

  My dad, on the other hand, struck a deal with the Big Guy. “Save her life, and I’ll take her to church every Sunday.”

  God said, “Deal.” So my dad kept his promise. Every Sunday he took both me and my sister to church. (I think his decision to include my sister was some sort of illness protection plan.)

  My mom stayed home and read the paper. My father tried to get her to come, but she wouldn’t. Not even on Christmas or Easter. We always celebrated these holidays: church services, big Christmas dinners, Easter dresses, Easter hats, and Easter egg hunts. We just never talked about the true significance of the holidays. My mom was mad at God, didn’t believe in God, and she would have nothing to do with Him. So there.

  When my mom told me that she was going in to see her doctor to discuss the results of her biopsy, I knew immediately that she had cancer. If your test results are benign, they will tell you over the phone. Doctors don’t have you come in unless it’s malignant or you’re one of those patients who always brings freshly baked cookies or homemade hooch.

  I immediately e-mailed an aunt and asked her to accompany my mom. “No matter what she says, go with her. And please take notes,” I wrote. My father could have gone, but I was afraid he would be as shocked as Mom and regret that he didn’t force her into attending church, perhaps avoiding this disease.

  Having my aunt along turned out to be a good idea as my mother completely fell apart and didn’t hear a thing. In fact, in our first conversation she kept saying, “I have SIDS! I have SIDS!”

  I said,“Mother, you can’t have Sudden Infant Death Syndrome.”

  “That what the doctor said, C-I-D-S.”

  Ductal Carcinoma In Situ. DCIS. She had the right letters, but in the wrong order.

  Knowing how freaked out she was about her diagnosis I dreaded telling her mine. I really tried to downplay it, but it was like trying to downplay “holocaust,” or “nuclear attack.” As much as having cancer herself scared the hell out of her, she was even more scared for me, and I could hear the pain in her voice.

  To know that I was causing my mom’s pain—again—was torture for me. I’ve always felt some irrational guilt over having that tumor when I was a baby. It was a big horrible event for both my parents, and even years later it was hard for them to talk about it.

  Then when I was nine, I fell and broke off my two front teeth. This resulted in countless trips to the dentist and orthodontist. At thirteen I had a mole on my nose that my doctor got squirrelly about, and that was another surgery. Growing up it felt as if I was just one big walking problem who cost my parents lots of money. After I worked as a chaplain in pediatrics I realized that I was monstrously healthy compared to a lot of kids.

  But talking to my mom on the phone that day I felt such grief over her grief.There is this amazing ping-pong suffering that occurs between a patient and a family member—which brings me to my husband.

  Wes

  If you ask him now, he’ll tell you that he was in total denial for quite a while. When I had my first biopsy, he smiled and said cheerfully, “You’ve had biopsies before and they’ve always been negative!”

  “I have a feeling,” I said.

  He didn’t like hearing that because my “feelings” are usually right on. Because he is a scientist, and there haven’t been any studies on my “feelings,” it was easy for him to dismiss this one. But the biggest reason he didn’t believe it is because he really, really, really didn’t want me to have cancer.

  He told me that he felt bad that I had all those biopsies, and now I had to have a mastectomy. I knew he felt bad, and I felt bad that he felt bad.You can see how this ping-pong suffering starts.

  The temptation is to start lying about how you feel.We actually had this conversation:

  Deb: “Oh, it’s no big deal. Just a boob—don’t feel bad for me. I’m fine.”

  Wes: “Oh, I don’t feel bad. I’m fine, too.”

  Then we both burst out laughing because we knew we were such liars! We were also laughing because we have an alternate definition of “fine,” which was perfectly true.

  I once worked with teenagers in recovery, and whenever I said I was “fine,” they would say,“FINE: Fucked up, Insecure, Neurotic, and Emotional.” That pretty much sums up how you feel when you or a loved one gets cancer.

  The only way to stop ping-pong suffering is to simply accept that you and your loved ones feel shitty about this whole thing. Period. So feel shitty, move on, and pretty soon you’ll all be feeling fine.

  Wes thought about me dying from this, but he said he knew if he was thinking about me dying, then he wasn’t enjoying the present moment in which I was living. So he pretty much worked on staying in the present. He said he knew the statistics and for my kind of tumor, the cure rate was very high. He felt very confident about this.

  But at night, he would cry in his sleep. He sounded like a very small child. I didn’t want to wake him up, so I would gently rub his back until he stopped crying. I didn’t tell him about this for months.When I finally did, he said,“I’m glad I was working it out in my dreams.”

  For the first month after my diagnosis, we would wake up, and one of us would ask the other,“Did you have that same nightmare that I had? The one where you/I have breast cancer?”

  It didn’t seem real to either of us for a long time.

  Death

  Almost everyone who gets a cancer diagnosis starts thinking about death. Even though my surgeon told me that my cancer was curable, I still started thinking about death. This was not new for me since I worked in hospice for many years, and death is pretty much unavoidable there. I’ve thought about my own death a lot over the years, but after my diagnosis it seemed so much more possible, so much less theoretical.

  Death is one of my favorite subjects, but most Americans don’t like to think about death or talk about death, let alone actually do it. I’ve learned the hard way that you can’t talk to just anyone about it.Try bringing up death at a dinner party.

  “So what do you think happens when you die?” It’s a total conversation stopper. And Wes loves to talk about his work: infectious diseases and parasites. So we just don’t get invited out anymore.

  A few years ago, some of the medical staff at the Seattle Cancer Care Alliance came to me and said,“We’re not comfortable talking to our patients about terminal illness, spirituality, and death.” Many of them found themselves wanting to run out of the room, starting to cry, or asking if
the patient would like more pudding.

  I know it seems crazy that medical staff would be uncomfortable with death. I mean, they see death all the time, right? The truth is, despite the medical school classes about death and dying, physicians still see death as the enemy. Take a look at the mottos of some big cancer centers.

  “Working together to cure cancer.” (Seattle Cancer Care Alliance)

  “Where the power of knowledge saves lives.” (City of Hope National Medical Center)

  “Fighting cancer is all we do. All day. Every day.” (Fox Chase Cancer Center)

  “Today’s discoveries—tomorrow’s cures.” (Wistar Institute)

  These are all good mottos.Who wants to go to a cancer center that proclaims,“Hoping to make you feel better”? Or “Taking good care of you even if you die”? But notice how insidious this is—everyone wants to fight, cure, and save lives. Death means they’ve failed.

  I knew that until the staff explored their own feelings about death, they couldn’t be comfortable talking with their patients. So I created this program called “The Existential Expedition.” We didn’t want to sound religious or anything.

  At the first session we talked about our childhood dreams, our family beliefs around pain and suffering in the world, and what called us to the work we’re now doing. Each session was two hours, and each group could be no larger than six people. I mean, these are heavy questions and people need time to think, discuss, try on new ideas, and ask questions.

  For the second session we talked about spiritual beliefs—what we were raised to believe and what we now believe. People often equate religion with spirituality, and because many staff were not churchgoers, they were surprised to realize that they actually had spiritual beliefs.

  I think your religion is simply the basket in which you carry your spirituality. So maybe you carry your spirituality in a Jewish basket, a Buddhist basket, an Islamic basket, a Christian basket, or a basket without a name.Whatever. The important thing is that you don’t get more hooked on the basket than the contents.

  The contents involve life’s meaning, how it can be cherished and nourished. It’s about how you cope with life, how you view it, how you experience it, where you find meaning. There is a lot of common ground between religions when you look at them under the broader umbrella of “spirituality.”

  But anyway, about “The Existential Expedition”: we saved the best for last. At the final session we talked about what we thought about death. Keep in mind that the group had already spent four hours together sharing their beliefs. Every discussion included lots of laughter, a fair amount of tears, and copious amounts of Diet Coke and coffee.

  The first question was, what do you think happens when you die? Personally, I’ve thought about this a lot. I like to try on different ideas about death. The Heaven and Hell thing just doesn’t work for me. Perhaps it’s the heavenly fashions that bug me. If you’re going to get some perfect new body, why cover it up with all that fabric? And why the sandals? Heaven for me would mean comfortable heels.

  So sometimes I think, well, what if it’s like we’re ocean waves? You know, you take a snapshot of a wave, and then you go back the next day and that particular wave is gone, but the ocean’s still there. So where’s the wave? It still exists, right? It’s just not in the same form.

  Or what if it’s like the Buddhists say that you come here to learn something, and if you don’t get it this time, you have to reincarnate, and try it again? But if you’ve managed to learn it then you can stay in nirvana or you can choose to come back as a bodhisattva, and help the rest of us. I love that idea. I mean, haven’t you met people, especially children, and said to yourself, “Hmm, you’ve been here before, haven’t you?”

  Or what if after we die we’ll be backstage saying to one another, “Oh, my God, you were so good as the overbearing mother! And you, you were the cranky checkout guy—fantastic!”What if we’re all playing parts?

  I really don’t know. Someone told me death is whatever you believe it to be. And I thought,“Well, which day?” I just know we could all do each other a big favor by being more open and curious, instead of avoiding talking about it.

  So here was the final question of “The Existential Expedition”: if you had to die right now, how would you want to die? I gave them all sorts of choices: drowning, murder, heart failure, house fire, Alzheimer’s disease, shark attack, car accident, snake bite, or poison mushrooms. I knew I had to offer lots of choices because of my experience in hospice. I would often hear patients saying,“Oh, w-a-a-a-h, I’m dying of cancer.”

  And I’d say, “Yes, that’s right. How did you want to die?” That would always stop them in their tracks, because they never thought about it. So here was the most surprising thing: more than seventy oncology staff went through this program, and 80 percent of them chose cancer as a way they would like to die.

  One nurse said, “Before this group, I would have said that cancer is the worst. But after really thinking and talking about it, which I never did before now, I see that cancer can give you time to say goodbye, thank you, and I love you. It gives your family some time to get used to the fact that you are going to die.”

  “That is so true!” another said. “Sudden death is horrible for your family. My brother died suddenly, and it was so unbelievable. I kept waiting for him to call me or send me a damn postcard. It took me a year to really get that he was dead.Then I started grieving. So I would pick cancer.”

  Still another said, “I can’t believe I’m going to say this, but I choose cancer, too. My big fear was pain, but I know from experience we can control most cancer pain with medication.”

  No one chose death by murder or car accident: too violent. A house fire: too painful. Drowning: too scary. Poison mushrooms: too ...embarrassing.

  So if 80 percent chose cancer as how they would like to die, what did the other 20 percent choose? The old standby: they wanted to die in their sleep—with the house clean, the laundry done, and the refrigerator full.

  Oh, yeah—how did I choose to die?

  Cancer.

  Two

  RATS!

  From: Debra

  Date: May 12

  To: Everyone

  Subject: Rats!

  Dear Family and Friends,

  Well, Wes and I would rather have a rat invasion than a cancer invasion (although some have told us rats are harder to get rid of), but we don’t have a choice in the matter.

  My pathology report came back, and I was tempted to return it immediately and write NOT ACCEPTABLE on it. It turns out that one of my nodes was positive. I must say, Wes and I were absolutely stunned. I actually felt that this mastectomy was quite doable and I’d be back at work in a few weeks. Well, now it’s a whole new ball game.

  Also, although we are both mightily in favor of coach to first class airline upgrades, we are not happy that my tumor was upgraded from grade I to grade II. That little overachiever!

  We found this out on Tuesday night, and I would have let you know sooner, but I’ve been busy trying to breathe. Plus, there is, as of yet, no treatment plan. The Breast Cancer Specialty Clinic

  (and delicatessen) meets Tuesday to discuss my case. We don’t see an oncologist for another week after that. So we are in that sucky No Clue Zone.

  I am not in favor of chemo for two major reasons: (1) I just got these highlights done, and (2) I have a really unattractive flat spot/indentation on the back of my head. Seriously, it’s big enough for a birdbath. So chemo doesn’t excite me—although

  I’ve heard that all that vomiting really strengthens the core muscles.

  I am not in favor of radiation because isn’t that how Godzilla got started? Wasn’t it some sort of radiation accident? I think I carry that GDZL-2 gene.

  And as for further node dissection—ever notice how the word “die” is embedded in that phrase? I can hardly lift my arm now, and they took out only three nodes! So I say, “No way nodes!”

  I guess that leaves voo
doo. I’ll have to research that.

  My mom’s lumpectomy is Monday morning, and I haven’t told her any of this. She is already sick with worry, and I don’t think she needs to go into surgery with this crappy news. In fact, I was thinking of telling her my mastectomy was really a C-section, and she has twin grandchildren! She would be so happy! She would probably have a spontaneous miracle healing.

  The most fun I’ve had this week was calling my patients. They were happy to update me with their news and to give me advice. Honestly—it was so great, a win-win situation. I’m telling everyone at work to be open about me having breast cancer. If they simply say, “She’s out for a month,” the patients will be thinking I’m in jail for shoplifting or God-knows-what. And, I’m happy to be the poster child for yearly mammograms.