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

by Debra Jarvis

  No, it’s not about the hair, but people want to make it about the hair because it’s so hard to listen to someone talk about fear and pain and grief. It’s the same reason my friend went on with his platitudes—it was too hard for him to listen to me. It might even cause him to feel his own painful emotions. But if you can listen to someone talk about those feelings, then when you do talk about the hair, it will really be about the hair.

  That was one of the great things about having Lynie around: I could talk to her about anything.Well, almost anything.The one thing we couldn’t talk about was her estrangement from my parents. I’m not even sure now what the original dispute was about, but there were hurt feelings on both sides. Like many things of this nature, the longer it goes on, the longer it goes on. It had been going on for sixteen years. But I come from a long line of grudge bearers on the hotheaded Spanish side of my family: fathers and mothers, sons and daughters, brothers and sisters who don’t speak to one another. Changing allegiances. Shifting alliances. I can’t even guess at the wounds and pain that they all carry.

  Over the years, I was determined not to edit my conversation with either my sister or my parents. So I would cheerfully report to my parents about a visit with Lynie and tell Lynie about visiting Mom and Dad.

  These comments were met with what I sensed was strained enthusiasm or forced neutrality. Over the years, I had to give up my desire for them to reconcile. I gave it up approximately six hundred times. Each time I got a little better at letting go. But now I had cancer and like a herpes virus that lies dormant and is suddenly activated, the desire came back with a vengeance.

  I thought perhaps both mom and I getting cancer would remind everyone that life is too short, and let’s just be a loving family. Forgive and forget! Or remember and reconcile! For God’s sake, it’s your child! It’s your parents! I had prayed about this, seeing them all surrounded by Light—merciful, forgiving, loving Light. What I probably should have done was see myself surrounded by Light—detached, non-judgmental, trusting Light.

  Here is a little-talked-about danger with cancer (as if it’s not dangerous enough): because you are forced to think hard about your own life, you think everyone else should, too. You think they should get their shit together—according to your agenda.There is a temptation to say, “Hey! I have cancer, listen unto me.”

  It’s a form of emotional manipulation and it’s dangerous. Cancer does not give you immediate wisdom, insight, and understanding. If you do gain any wisdom, insight, or understanding, it’s not because of the cancer per se, but because the cancer has forced you to do your inner work.

  Your having cancer also does not suddenly wake up everyone else. If they weren’t listening to you before, they’re not going to listen to you now. Maybe they will if it looks like you going to die very soon. Even then, they’ll probably all be in denial about that or say that you’re overmedicated or even demented. Unless they ask you for your opinion on some long-standing issue, it’s better to just shut up. So I didn’t talk to Lynie about any of this—for now. But it was heavy on my heart.

  After the oncologist appointment, Lynie, Wes, and I went to Blue C Sushi for dinner. This is the kind of place where different kinds of sushi go by on a conveyor belt and you grab what you want. We were a bit overwhelmed with information, and I was feeling sober, serious, and life-threatened. So this was the perfect place to go, because there’s something goofy and uplifting about watching your dinner go by on a little train. It pulls you out of yourself—you can’t be self-absorbed and snag the spider maki at the same time.

  The place was hopping because it’s fairly cheap and close to the university. I looked around at people laughing, drinking, eating and thought, “No matter what happens to me, life goes on. At some point I’m going to die, and every single person in this place is going to die.” This may sound morbid, but I had just eaten the uni, the sea urchin, which does look like decomposing flesh. Thoughts of death came easily.

  I found that thought,“everyone dies,” comforting. It was comforting in the same way that when I saw young women and felt envious or nostalgic for, say firm skin and no cellulite, I’d think, “You will be my age some day. God willing.”

  I thought, “The battle with the body will never be won. It’s best to accept it, and just carry on.” I felt quite British when thinking this, stiff upper lip and all—as opposed to injected upper lip.

  As I mentioned before, friends and family really wanted to help. So Lynie truly was thrilled to vacuum, scrub my shower, and wash dishes. I missed vacuuming. It’s the thing I do when I don’t know what to do with myself or when I’m upset or confused. I love the instant gratification.Visible dust balls? Gone. Crumbs on the floor? Gone. Tracked in pine needles? Gone. If only life were that easy. Twenty pounds overweight? Gone. Annoying coworker? Gone. Invasive cancer? Gone.

  Anyway, when you’re looking at recuperating from surgery and six months of chemotherapy, the immediate satisfaction of vacuuming is quite enticing. But I had been warned that next to making beds, vacuuming was one of the worst possible things to do when recovering from a mastectomy. So I lay on the couch and watched enviously as Lynie vacuumed the entire house.

  I did not lie on the couch the whole time she was in town. We did go out. I couldn’t drive, so she drove us to the mall where I looked for a particular candle with a smell that made me feel cheerful and loved and happy. All that from a scented candle! I had been given the candle for my birthday and burned it all the way down. In the candle store we were like crazed beagles madly sniffing everything on display.

  “Found it!” I barked after ten minutes of sniffing. The scent was “Citrus and Sage.” I wanted to buy everything in the store that carried this scent, and believe me they had infusers, candles, sprays, sachets, and I think I saw scented tennis balls. I carried the candle over to Lynie and waved it under her nose.

  “Don’t you just love it?” I asked. “I don’t know why I love it so much. I just do!”

  She took one sniff and said, “It smells like Wes.”

  “What?” I sniffed again and realized, that, oh, my God, yes, it smelled just like his aftershave.

  “I guess that means you like having him around.”

  She was absolutely right.

  Learn, Baby, Learn

  Recuperating from my surgery gave me plenty of time to think about my patients. Perhaps it was because Wes and I were so happy together that it especially pained me when a patient in a healthy, happy relationship did poorly. I had been following Jason for a couple years. He and Linda had been married for ten and had two little boys. The chemotherapy he received for his leukemia didn’t work. There were only so many tricks up his oncologist’s sleeve, and the stem cell transplant was the last one. It didn’t work.

  So there he had been, on a ventilator in the ICU with no hope of coming off of it. This happened a few months before my diagnosis, before I really understood how much suffering a partner goes through. But I did understand that this was the most agonizing decision of Linda’s life—she decided to turn it off. She had reached a place of peace and calm about it. She asked me to pray and stay with her as they took Jason off the ventilator. Linda and I were about to enter Jason’s room, when the surgical resident suddenly appeared.

  He planted himself directly in front of her. “Linda,” he said. “I’m so sorry about Jason. I did everything I could. But I feel like such a failure. We went into his chest twice, and I don’t think we could go in again. But I feel like a quitter. It’s so terrible.”

  Linda looked stunned during this declaration, but she gently touched his arm and said, “It’s okay. It’s not your fault. You did everything you could.”

  He hung his head. “Well, I know. You’re right. But I still feel like a failure.”

  After he left, Linda asked me, “What was I supposed to say to him?”

  I shook my head. “I can’t believe it! Your husband is about to die, and he’s asking you to reassure him that he’s a good doctor.�
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  This experience haunted me for days. I was righteously indignant! I wanted to tell that surgeon to park his ego when it came to patient care. If I didn’t tell him, who knew how much more damage he would do?

  I can be a real jerk about stuff like this and I, Super Chaplain Defender of Patients, wanted to go in on my white horse, draw my sword, and take that doctor down. I knew that would be wrong, but I didn’t know exactly what I should do.

  My boss told me to forget about it. “He’ll never listen to you.”

  Wes said, “Page him through the hospital operator and talk to him on the phone.”

  That would be the option that required the most courage on my part. I’d need a big horse, an enormous sword, and lots of armor. As I was pondering these options, a memory from my own internship twenty years ago came back to me.

  A patient’s wife had asked me if my parents liked Wes, who was my fiancé at the time. “Oh, yes. It’s not like he’s an ex-con or anything,” I had answered.

  On my next visit to this patient, his wife pulled me aside and had gently said, “My husband is an ex-convict. But he’s paid his dues and he’s a wonderful man. I just wanted you to know that.”

  I died a thousand deaths right there, but it was a big learning moment for me. She not only taught me about thinking before I speak, but she did so in a kind and compassionate way. And so I decided to talk to the doctor—no horse, no sword, and no armor.

  A surgical nurse returned my page. “We’re just about to go into surgery, he’s scrubbed in now, he’ll be in surgery all day,” she said. “Oh—wait a minute—it looks like we’re waiting for a pathology report to come in before we can operate. So you can talk to him. Hold on.”

  I told him who I was and he remembered the situation.

  “I know that was a really hard case for you,” I said. “I just wanted to check in with you and see how you’re doing.”

  “Oh, yeah,” he said. “I felt so bad about that case. I did everything I could. It was so hard. I felt horrible.” His voice sounded kind of echoey, and I figured it must be the acoustics in the OR.

  “I know. I just want to make sure you know that his death had nothing to do with your skill as a surgeon. His death was not your failure and though it’s normal to feel like a failure at a time like that, you might not want to share those feelings with a family member. Maybe talk with a colleague or one of us chaplains.”

  “I don’t think I said ‘failure,’” he said sharply. I was silent.

  “I guess I did say failure. Did his wife say something?”

  “Well, yes, she did. You know, this isn’t a criticism. It’s just feedback to help you be a better doctor.”

  Now he was silent. “I guess it sort of took her out of the moment,” he finally said.

  “Yes.”

  We ended our conversation with me saying I hoped to see him again and he mumbled something back.

  I went home that night and told Wes the whole story.

  “You know,” he said. “When you’re all scrubbed in for surgery, they don’t just hand you the phone.They put you on speakerphone.”

  “Speakerphone?!” I gasped.

  I was so glad I got down off my horse and was kind to him. Because really, all of us are doing the best we can.

  Chemopause

  I am vain. As a high school freshman, I loved being mistaken for a senior. As a fifty-year-old woman, I loved being told I looked forty. But I knew what happened when your estrogen was yanked away. Because my tumor was estrogen- and progesterone-receptor positive (ER+, PR+), I could not take any replacement estrogen. Au contraire! The big “E” had to be banished forever and that meant menopause.

  I had seen patients go into immediate menopause, and it’s intense. No gradual slide into warm flashes and then hot flashes. It was more like a nuclear bomb going off. I had no problem with menopause itself, but I hated that it was forced upon me before my time.That just annoyed me to no end.

  As if that weren’t bad enough, my mother was reminding me what happened when her estrogen shut down. “Dry skin. Dry hair. Everything gets dry. And suddenly you have wrinkles! It’s hell getting old.”

  But like mine, her tumor was ER+, PR+, and she couldn’t have any estrogen either. So she had to stop taking her replacement estrogen, and now she was having hot flashes all over again. There was a plague upon our house.

  So I hated that I would be aging from chemo. I hated that all my exercise, good eating habits, and Crème de la Mer couldn’t stop what chemopause would do. The only way I could get over this was to check my breathing. In-breath or out-breath? Stay in the body, stay in the present—then I was okay. But I still wished it wasn’t forced on me.

  That’s a control issue and the way to deal with that is to practice letting go.

  Sometimes the Divine sounded more Martha Stewart than Mr. Miyagi. I knew that I suffered only when I wanted what I couldn’t have. I had to stop wanting not to age, not to be in menopause. And on that day I cancelled my subscription to my favorite beauty magazine, Allure. It just made me want what I couldn’t have.

  Making a Plan and Checking It Twice

  My case manager told me that many people on CMF are able to continue working. That seemed like the thing for me to do. For one thing, it’s really easy to get self-absorbed when you have cancer. The whole treatment process encourages that because you’re getting a weekly blood test, your nurse is asking you questions, and everyone seems more concerned than usual about you. I didn’t need any encouragement to be self-absorbed. Seeing patients, being with staff, and focusing on others would balance things out.

  My boss understood this since many times in the past I had said, “I’m feeling cranky. I need to see a patient.” Whenever I had been in a bad mood in the past, I would visit a patient and always feel better. It wasn’t that I needed to see someone in worse shape than I was, it was something about the interaction, the communication, the feeling that I was doing and being exactly what I was supposed to. I knew working would be therapeutic for me.

  I could also go back to work because I didn’t have anyone depending on me for physical care. Wes was healthy, we have no kids, and our beloved dog died a few years back.

  Getting a cancer diagnosis when you have children at home is a whole different ball game. In fact, it’s not a ball game at all, but more like a wrestling match. You are wrestling with the fact that you feel like crap, but the kids still need their diapers changed or lunches packed, or must be schlepped off to soccer or diving practice. If you have a partner, he or she still needs affection and attention. But when fatigue and nausea have a chokehold on you, it’s hard to think of anything else.

  I thought I could manage to work my usual three days a week. However, I was going to hold that plan lightly and gently because I knew everyone reacted to chemo differently. But I was starting out from a strong place—I had been training for a triathlon when I was diagnosed. I hoped that being in good shape would serve me well the next six months.

  Yeah, I was in perfect health—except for the cancer.

  Death Doesn’t Take a Holiday

  Just because I was off work recovering from surgery didn’t mean my patients were on hold.They continued to recover or decline.

  Eleanor continued to decline and had been on hospice for two months. She was sixty years old and from New York. She and her husband Harvey had that east coast way of talking that makes you feel as if they’re arguing with you. She was sharp and edgy and funny and angry.

  Harvey had been coming in to see me for counseling. Well, it wasn’t really counseling. I hardly said a word because Harvey would rave non-stop for about forty-five minutes and then spend about five minutes thanking me profusely and telling me how much better he felt.

  I had told Harvey that I would be off for a few weeks.“Oh, no problem, that’s fine, I’m fine, we’ll be fine, we have friends.”

  But the chaplain covering for me called me and said that he had left several voice mail messages for me.
“He sounded distressed,” she said.

  So I called him and resigned myself to a forty-five minute phone call. But I was wrong. He didn’t want to talk.

  “Debra,” he said, “Can you come over? It’s happening. Eleanor is dying. She seems upset. She’s struggling. She’s mumbling. She’s picking at the sheets. This is terrible! This is just horrible!” Pause. “What is it, my darling? Are you waking up? I’m talking to Debra.” I could hear voices in the background.

  “Who’s there with you, Harvey?”

  “The hospice team: her nurse, the social worker, the chaplain. But if you could come, Debra, I think Eleanor will settle down. Eleanor, do you want Debra to come? Hmm?” Pause. “Eleanor isn’t responding, but I thought you could say something to give her some peace.”