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

by Debra Jarvis

  Some people have amazing transformations before they die. One of my hospice patients changed so much that his ex-wife remarried him. “He became the man I knew was in there when I married him,” she said to me. “He lost his real self for many years, but he found it again. I was happy to love him and care for him as he died.”

  This doesn’t happen often. Many people die the way they live. Eleanor was not someone who would die gently. She never did anything gently.

  “Harvey,” I replied, “There is nothing that I can say that will give Eleanor peace. She is doing this her way. Not everybody has a peaceful death.” I didn’t even mention that I was recovering from surgery because that wasn’t the reason I refused to come. I could hear Harvey crying, and all the little pleaser and guilt bells were ringing in my head. I had to put my hand over my mouth to stop myself from saying anything else.

  “Okay,” he said.“I’ve got lots of support here. But she’s dying!”

  “I know, Harvey. I’ll keep you both in my prayers.”

  We hung up and I sat right down, closed my eyes, and visualized them all surrounded by the Light. I held this for a long time.

  I’ve been with lots of people as they’ve died. It’s like watching a candle go out: the flame flickers ferociously because the wax is gone, then flickers more gently, then poof! it’s out. For a moment there remains that glowing wick and you think, it’s still here! It’s going to burn again! But then the glow fades to black and a thin stream of white smoke rises up. Then you know, for sure, at last, the flame is gone. Nothing left but the candle stub, still warm. And you can see so clearly that the candle is not the flame. It is not the candle that gives light and warmth, but the flame. But of course, where is the flame without the candle?

  When I opened my eyes I started to wonder about my own death. Would I go gently? Or would I be cracking jokes and demanding See’s Candies? Would I get out of my body with everyone there or would I sneak out when I was alone?

  How would I be in a fatal car crash? I really hoped I wouldn’t say, “Oh shit,” because that is just so common.That’s what most airplane pilots say as they’re going down. How about “Hell yeah!”

  What about a stabbing? As the life ebbed out of me would I be fumbling for my lipstick? I’d probably try to crawl somewhere that could be easily cleaned, my mother’s voice echoing through my head, “Don’t eat in the living room!”

  I really want to be thinking some good thoughts like, “Woo-hoo! Whatta ride!” or “What’s next?” or “Holy-Jesus-God-and-All-the-Saints, Buddha, Allah, here I come!”

  Or maybe just a simple, “Thank you.”

  Four

  THE PORT REPORT

  From: Debra

  Date: June 13

  To: Everyone

  Subject: The Port Report

  Dearest Family and Friends,

  I thought I’d wait until I had my port-a-cath placed to send an update. The port is a catheter, which they stuck under the skin on my chest. It is about the size of a woman’s Timex watch. It is attached to a line that runs into a big vein in my chest area. I will receive my chemo directly through the port and won’t have to be stuck in the arm every week to put a line in for the infusion.

  I had my port placed on Thursday. I knew something was amiss when I woke up and the resident said in a falsely cheery voice, “Doesn’t she look great? She looks like she just came back from the spa!”

  I immediately thought, “Nice try—what’s wrong?”

  It turns out that after two hours of digging, prodding, and general horsing around, they could not get the line into my subclavian vein, so yes, they went for the jugular! I’ll tell you right now, no amount of cherry flavored oxycodone would make me go through that again.

  Because I am returning to work this Tuesday, and the steri-strips on my neck will still be in place, I foresee two types of jokes coming at me: (1) vampire jokes, and (2) hickey jokes. You have my permission to knock yourselves out.

  Replacement Parts Department: I had a saline implant/tissue expander put in at the time of my mastectomy. This is where they cut through my pectoralis muscle, made a little pocket, and shoved—excuse me—placed a partially filled implant in the pocket and sewed me back up. There is then a port sticking out the side of my breast that looks just like the thingy through which you blow up a child’s wading pool. Except that this is under my skin. E-e-w-w.

  Then, my masochistic, I mean, altruistic plastic surgeon filled it once a week. This did not hurt—at first. But the next forty-eight hours had me tearing out my hair and confessing to all sorts of crimes that I did not commit. Anything to stop the pain. Then I was fine.

  I think I could have been done with one filling, but my surgeon did two. Our conversation went like this:

  Me: “Wow! I think it’s too big!”

  Doctor: “No, no—it’s still swollen.”

  Me: “Is this a guy thing?”

  Doctor: “No, no. Come back in a month and if it’s too big, I’ll take some out.”

  Me: “If it’s still this big in a month, I’m gonna come back and put a port-a-cath in your jugular!”

  He fainted.

  So for my male friends: You get one look, two at the most. It is the right side. It’s no big deal, and I mean that literally. Then you can go back to admiring my intellect and wit.

  Finally, some have suggested that perhaps I am in denial because they think I’m way too cheerful about all of this. Here is what I have to say about that: I have seen women half my age come in with breast cancer at twice my stage. So I have a nice correction to my perspective. It doesn’t mean I have not been deeply annoyed by much of this.

  The grief it has caused my family and friends has been hard to bear. It’s been hard to watch Wes run himself ragged doing everything. When I came home from the port placement they said, “Don’t lift anything heavier than oxycodone with your left arm.” And I still don’t have full function in my right arm. So that meant I was an armless, constipated stoner for two days. I hated that. Wes was actually fine, so I decided to simply get over it.

  Cancer has not made me start to think about the big issues. You know that the purpose of life, spirituality, dying, and death are all things I’ve been yakking about for years. So it’s like, “Oy vey. Again with the meaning of life?”

  I know there is Something Bigger than all of us that connects us to one another in a wonderful and mysterious way. It is up to me to find meaning in this experience. The hero/heroine’s journey is never about simply slaying the dragon. The task within the task is to slay the dragon while finding meaning, gaining wisdom, and doing it with some grace and charm. I figure if I can go through cancer treatment without losing my inner joy, and with some measure of compassion and good humor, it is better for all of us.

  The sermon is now over. Will the ushers please come forward? We will receive the morning offering.

  My mom is doing great. She had a lumpectomy and her nodes were clear. She is back to gardening and complaining about her hairdresser—a sure sign of recovery.

  I can’t thank you enough for your flowers, cards, e-mails, prayers, and good thoughts. Just before my diagnosis, I was given a gorgeous temporary office. Last week they took it back—an officectomy—another painful procedure. It’s okay—I loved every moment in that beautiful office because I knew it was temporary. Just like life.

  Much Love and Hugs,

  Debra

  Reconstruction

  Many women have told me that their breasts are important to their sexual identity. One woman told me she hated to give up the breasts that fed her babies. Another woman said she would miss propping up her reading on her “shelf ” as she called it.

  The most I could prop up on my breasts were toast crumbs, so I was not grieving the loss of my breast like many women do. But there was that question of, “What goes there now?”

  Because I am basically lazy and dislike hassle, the thought of putting a prosthesis in my bra did not appeal to me. I also had th
e happy problem of not having enough fat on my belly for one of the flap procedures.That was okay with me since I didn’t relish the thought of an eight-hour surgery and then waking up in the ICU.

  I wanted to be able to put on my clothes or slip into a swimsuit and go.Wes said his love for me was not dependent on me having breasts, or “time bombs,” as he now referred to them. “Whatever you choose is fine by me,” he said. So the implant seemed like the easiest thing to do.

  It was easy but painful. My implant was both an expander and an implant at the same time. Once it was the correct size, my plastic surgeon removed the port from the implant, and it self-sealed. This saved me from having to get another surgery. He said after each filling I might feel some discomfort.

  Perhaps we need a clarification on the word “discomfort.” The dictionary definition is “very mild pain.” To me “very mild pain” is a paper cut, hitting your funny bone, or getting a sliver in your finger.

  The implant filling was more along the lines of slamming your hand in the car door or being eaten by a wild animal. He was correct, however, that I did not feel “discomfort” immediately. It took about an hour before I felt like shrieking. I am told it is not like this for everyone, and to that I can only shout, “Thank ya, Jesus!”

  At the final filling my plastic surgeon, the resident, and my husband were all looking critically at my boobs. Did they match? How much would the swelling go down? Do not think this bothered me in the least. I was actually yawning. By that point, so many people had looked at my breasts I could have walked topless into the anniversary sale at Nordstrom and not blinked an eye.

  So there was something there to fill a bra, but it was not the same shape as my real breast. My real one is more cone-shaped, like a miniature Mt. Rainier except without the snow and volcanic peak. The implant was more like half a baseball. I would have said half an orange, but I hate how fruit terms apply to women and sporting equipment terms apply to men.

  I was not grieving the loss of my breast, but I was grieving the loss of ease with my body. My implant was uncomfortable all the time. I thought twice about reaching for things with my right hand. Never did I realize how much I used my pectoral muscles. I could hardly do anything that required pressure from my right hand. This meant not only could I not chop, but also I couldn’t wash my face, scrub the sink, or applaud. I couldn’t believe that last one.

  But then, how many opportunities would you think I’d have to clap? Lots. That’s the thing with cancer—the plans you made before your diagnosis are still in place. Some of them you have to cancel, but others you can keep. Having cancer does not mean your whole life stops.You simply adjust or modify your plans.

  For example,Wes cancelled his teaching trips to Montana and Alaska so he could be with me for my surgery. That was a nobrainer. But on the calendar we had theatre plans about two weeks after my surgery. My friend, Robyn, wrote and starred in the play Gravity, and her husband Steve directed it. Wes and I both really wanted to see it. So dressed in my black warm-up suit (the one for formal occasions) and armed with my bottle of oxycodone, we went.That is where I first noticed I couldn’t clap properly.

  So I adopted this way of clapping my left hand against my right palm as it lay in my lap. It looked so affected, as if I were in some British movie saying, “Yes, quite so. Indeed.” The audience was enthusiastic. I didn’t want them to think my restrained clapping meant I didn’t like the play. I also had just enough oxycodone on board to feel a little loose, so as I clapped like the Queen of England, I yelled, “Yay! Yay! Yay!”

  I was glad we went to the play because I got out of the house and back into the outside world. It was also one of Mr. Martha Miyagi’s most novel ways of speaking to me. The most unusual thing about the production (besides the trapeze work and the shower of shoes at the end) was the stage itself.

  Imagine a perfectly square platform balanced on top of a pyramid. So it turned, tilted, and tipped whenever anyone moved on it. Unless Robyn was standing right in the middle of it, she would fall off. Unless she was centered she would go down. Everyone who came onto the stage changed the balance of things, and she would have to adjust her position. At one point she was hanging on by her fingernails.

  Isn’t that just the perfect description of having cancer? Everyone and everything—people, medical tests, side effects—change the balance of your life and you have to adjust. Sometimes you feel as if you are hanging on by your fingernails. But all of it is manageable if you stay centered.

  Quite so. Indeed.

  You’re Not Dead Yet

  My first week back at work there was no gradual re-entry, no slowly walking down the steps into the shallow end of the pool. No, it was right off the high dive the moment I came in. I received a page that a patient needed to see me immediately.

  The case manager explained the situation: the patient, Robert, whose initial stem-cell transplant failed, was hoping to get his lymphoma into remission to receive another transplant. But the sad fact was they could not get him in remission, so he was not eligible for a second transplant.There was no more treatment left for him.

  “He’s in room 11 with his partner Michael and his brother Steve,” she said. “They are all shell-shocked at this news. It just makes me sick, Debra. They are such wonderful guys—they’re architects. I thought maybe you could talk with them. I told them you were coming.”

  This was the “oh-shit-there’s-no-hope-call-the-chaplain” situation. I don’t get many calls like this because I usually know the patients. It’s often much easier to discuss your impending death with someone you know. But this time I decided to make the fact I was a total stranger work for me.

  When I walked in I said, “Hi, I’m Debra. I know I’m a total stranger, and you don’t know me from Adam. But sometimes people find it helpful to sort things out with someone they don’t know.”

  I intentionally used the phrase “sort things out” instead of “talk.” “Talk” as in, “Don’t you think you should ‘talk’ to someone?” always sounded patronizing to me. I liked the idea of having someone help me sort out my feelings, my questions, and my hopes—like cleaning out a drawer or organizing a closet.

  I looked around the room and saw everyone had a bottle of water, and there was an extra one for me on the counter. There was also a big box of tissues next to my water bottle. Bottles of water and tissues are not good signs. It indicates you are going to cry—so much you’ll need to rehydrate yourself.

  Robert had no hair, but I could tell from his eyes and skin that his hair had been red. He wore gray flannel pants and a forest green shirt with woven stripes. Except for the fact that he was bald and a little thin, he looked fantastic.

  So Robert, Michael, Steve, and I “sorted things out.”

  I turned to Steve. “Who’s older, you or Robert?”

  “I’m younger, younger than Michael, too. But they’re both like brothers to me.” Then he started to cry, and Michael reached over and squeezed his arm. I had a déjà vu feeling and realized this was the exact same room in which Lynie, Wes, and I sat talking with my oncologist.

  Stay centered.

  “I just want you all to know that I’m not afraid of dying,” Robert said. It felt as if he was trying to stop the flow of tears, reassuring everyone.

  “So what do you think happens when you die?” I asked.

  “Steve and I weren’t raised with any religion at all. But I came very close to death during my transplant. I know what it’s like. There was a big wide doorway. I wanted to walk through, but I couldn’t because it wasn’t yet my time. But it was beautiful and peaceful. Really it was.”

  This made all of us cry, not because he seemed brave or courageous, but because he was so sincere and so badly wanted to comfort his family.

  “You know how hard the transplant was,” he continued. “It was horrible—the worst thing that I’ve ever gone through. Death will not be horrible. I just wish I didn’t have to leave you.”

  They sat there and cried fo
r a while, and I took deep breaths and calmed myself down. I knew part of my reaction was deep gratitude that my family and I had a very different conversation in this room.When it looked as if everyone was breathing again, I asked, “So Robert, what was your life like before all this?”

  He told me he and Michael were moving to London because he was starting a job in an architectural firm there. They had met in college and had been together for ten years.

  Michael jumped in.“We had our stuff packed. The movers were coming the next day. Robert had gone in for a blood test because he wasn’t feeling well. His neck hurt. We never thought ...”