by Debra Jarvis
And that is how I feel about this cancer experience: It’s hard to see the glitter on every step. But it’s there if I look carefully.
Love and Hugs,
Debra
The Angle on Angels
I was sitting out in the infusion floor waiting room with Ellen. She had been coming in for years to get infusions. The waiting room looks out on Lake Union and beyond that you can see Queen Anne Hill and beyond that, because it was a gorgeous, blue sky day, you could see the Olympic mountains. I think it is so cool that they gave the best view to the patients and not the administrators. I asked Ellen to tell me what happened when she received her diagnosis.
“It was in the morning,” she said. “I made my doctor promise, no matter what the results were, that he would call. So the phone rang and it was him and he told me I had breast cancer and that it was advanced. After I hung up I closed my eyes for a minute—I was trying to take everything in. When I opened them again, the sun was streaming through the French doors onto the hardwood floors. The light was very bright, unusually bright, and the wood looked golden. I stood up, and that was when I felt them around me—angels.
“I walked down the hall to my bedroom, I could feel them following me—there was more than one. It was almost as if I could hear them, but no, it was a sense I had of their presence. I felt very calm and at peace. I knew whatever happened I would be okay.”
In the Bible, angels usually have three different jobs: guardians, as in the angels with Daniel in the lion’s den; messengers, like Gabriel who gave Mary the results of her pregnancy test, and terminators, like the angels who arrived to destroy Sodom and Gomorrah. Perhaps this variety keeps them from getting bored and looking for a different life altogether, in say, the travel industry.
Like Ellen’s, the angel stories I hear are mostly of the guardian/ messenger category. I’d like to think they’ve moved out of the terminator business, but I can’t be sure. So I asked some doctors about angel stories, and they told me they rarely hear them, or if they do, they don’t get the gory details.
A cardiologist told me that he had a patient who had a heart valve replacement who he expected to sail through the surgery. But day after day he continued to go downhill.
“Then one day, I walk in, and the guy is sitting up in bed. I ask, what happened? He told me matter-of-factly that he had a vision the night before who told him he could choose to get well or die—his choice. So he chose to get well. But he didn’t say who it was.”
I bet the guy had an angel drop by, but he wasn’t comfortable telling his doctor, a “man of science.” But patients figure this is my department, so I hear about angels all the time. A patient’s daughter told me she was so stressed out by her mother’s cancer that she thought she was just going to break down, have a heart attack, and die.
“I was sitting in the surgery waiting room with my head down, my eyes clenched shut, and my hands in fists on my lap.Then I felt these warm soft wings surround me from behind. It was the most wonderful feeling. I don’t know how long it lasted, but gradually I realized that I was looking at my hands resting open in my lap.The feeling stayed with me for the longest time. Now anytime I started to tense up, I remember the feeling of those wings around me.”
I have never seen an angel myself, but I think sometimes, it’s just that I don’t recognize them. Or they are invisible. I have had that experience. One day, B.D. (before diagnosis), I was out running and came to an intersection. I don’t know if I was zoned out or what, but I started to run through the intersection without even looking. And then it was as if a giant arm reached out and stopped me. I came to a sudden stop just in time to have a car roar by, inches away from me. Every time I walk through that intersection I am reminded of that.
I had a patient who would say to me, “Debra, everyone who walks in the door has a message for me from God.You must be alert! Angels are everywhere.You must look for the divine, search for it, insist on finding it!”
And a little while later I was grocery shopping, and the guy asked, “Paper or plastic?” And I thought, “Paper or plastic?” There was that sturdy brown paper bag looking so grounded and sensible. Was that the message? Then there was the floaty white plastic bag, so ephemeral, ethereal, almost intangible. Paper? Or plastic? In the end I had him put the paper in the plastic, thinking that perhaps the message for me was that I needed to integrate my life.
For years nurses have been called “angels of mercy.” But I know this pisses off some nurses who are proud of their degrees and their technical skills. I think all this anger stems from misunderstanding angels.
First of all, by definition angels are more powerful and intelligent than humans. Second of all, the Biblical angels were not beings with whom you’d want to clash. They don’t take any shit. Take a look at the story of Jacob who wrestled with an angel all night and was left with a permanent limp. I don’t see many examples of angels being all that nice. Maybe when they were talking to the shepherds,“Fear not, I bring you glad tidings of great joy.” I’d like to think they said that in a friendly, soothing tone, but who knows?
So I can see how easy it is to describe nurses as angels of mercy. Sometimes it felt to me as if the nurses were more powerful and intelligent than humans. And most of them certainly did not take any shit—not that any of them left their patients with a permanent limp or anything. And as for the “mercy” part, if you’ve ever had a nurse give you pain meds, you know how merciful it feels.
The problem lies in how angels are portrayed in figurines and Christmas cards, which make them look sweet, adorable, and lobotomized. Just remember that in the Bible, when people run into angels, they are usually awestruck.
Caring for Our Own
A few weeks after I was diagnosed, one of our infusion “angels of mercy” was also diagnosed with breast cancer. Unbelievable! It felt to many as if the fifth floor was under siege.Who would be next?
We weren’t the first employees in the clinic to have cancer and chemotherapy, but we were the first from the infusion department. That’s like the cardiologist having a heart attack, the surgical nurse needing surgery, or the psychiatrist having a breakdown. You get the picture.
Like me, the infusion nurse continued to work and received her chemo in the clinic. But unlike me, she was very private about it. She didn’t tell her patients. She didn’t send out updates. Everyone does it his or her own way, and I knew it would take more energy for me to keep my chemo secret, than to be open about it.
The first time I registered and received my wristband I certainly didn’t feel like a patient. I felt more like I was playing the part of a patient.
When I went to my dentist—now that’s when I felt like a patient. I was only slightly familiar with the dentist’s office, the receptionist, the dental assistant, and for that matter, my dentist. There was a certain professional distance in my relationships with the staff there.
But at the clinic there was no distance. We were close. The nurses knew me first as a friend and colleague. I had shared meals, gone out for drinks, and attended parties with them. How can you “unknow” someone? They had seen and approved my bionic breast.There was no going backward from that.
Because I continued to work in the clinic, the nurses couldn’t suddenly put a distance between us because we relied on one another for patient care.
But sometimes an emotional connection with another can complicate medical care. Chemo nurses often see patients every week, and it’s easy for them to become close to their patients. It can get to a point where they care so much about a patient that it becomes very difficult to inflict pain like starting an IV.
They don’t notice it at first because the connection doesn’t happen right away. It’s like the old story of putting the frog in a pot of cold water and then turning up the heat. He doesn’t notice it right away and by the time he does, it’s too late. I don’t know who in the hell is making frog soup like this, but if I ever find out I’m calling the authorities.
&nbs
p; Anyway, the nurses have told me that the anxiety and fear of causing pain can inhibit them from doing a procedure correctly. This has not prevented them from becoming close to their patients. If they are sure they will not be able to start an IV they will ask another nurse to do it.
The clinic administrators understood all this and were worried that it would be too stressful for the nurses to give chemo to their co-workers. They knew that the frogs were already in hot water. So there was a plan in place to have nurses from outside the clinic come in and give us chemo if our staff was unable to do it.
I didn’t think about this at all, so at my first chemo I was like, “La-la-la-la-la! Bring on the cookies! Bring on the tea!” I sobered up when Sherry came in to start my infusion. Her eyes welled up and she said, “I just don’t want to hurt you.”
“Don’t worry—I used the lidocaine cream. I won’t feel a thing!” I thought she meant having to stick the needle in my port site. But then I realized that she was thinking about the chemo. We hugged each other, and I could feel in her body that she really wanted to cry. So we just held on to one another for a few moments.This was going to be harder than I thought.
The first few times were the hardest. The nurses looked stricken when they saw me coming down the hall wearing my patient wristband. “Take that off,” one of them said. “I can’t look at it.” She was joking, but she was not joking.
Oddly, I almost always kept my staff badge on, and when pondering this I realized I was doing two things: (1) I wanted everyone to realize, that yes, even the staff at a cancer center can get cancer, and (2) I was not really a “patient.”
It was like saying, “See? I’m wearing my ID badge so I’m still one of you.” I felt that I could somehow comfort them by reminding them I was still me, doing my job, just stopped in for a little chemotherapy.
There begins the slippery slope of caring for your care providers. I knew all about how patients love to please their doctors. I’ve heard patients describe the most horrendous pain, constipation, or nausea, and when their nurses asked, “Did you tell your doctor about this?” The patients would say, “Well, no. I didn’t want to mention it.”
At times like that I wanted to shake these patients and ask, “Are you nuts? You’ve got to tell them—you’re preventing them from giving you good care.This is what these guys are paid for!”
How could people be so crazy? Easy. I found myself doing it the first month of chemo. Even though she knew me first as a colleague and a friend, Sherry’s job was to get “nursey” with me and in fact, every week she would say,“Now I have to ask all the nosey, nurse questions.” Then she would ask about my bowels and my nausea, and did I have any mouth sores, and how was I sleeping, and did I have any pain?
“Great, great, everything is great.” I answered her as if we had just met up at a party and she had asked, “How’s it going?”
Thank God Wes was there—he was my guardian angel. He just looked at me and said, “She’s had quite a bit of nausea and does have some sore areas in her mouth.”
Oh, yeah—the nausea, the sores. I’m surprised he didn’t say something about my sudden amnesia. This is another reason it’s good to have someone with you who really knows what’s going on—they keep you honest.
I soft-peddled my symptoms because I didn’t want to sound like a whiner or a baby. I didn’t want to cause anyone any trouble. I didn’t want to make more work for Sherry. These reasons are ridiculous and showed that I was missing the whole point of health care. It’s like going into a restaurant hungry and then not ordering any food because you don’t want to bother the waiter or the chef. Please.
But here’s the other reason I didn’t speak up: I was a caregiver damn it, not a care receiver. Of course that was all in my mind, and my mind had become one of those cigar-smoking mobsters in a 1940s motion picture.
“I’m the giver here, see? Nobody gives to me, see? My boys might make trouble for you, see?”
Picture this: my heart rolling its eyes at my mind.
I knew that I had to allow myself to receive care to heal. It goes back again to the foot-washing scene with Jesus saying to Peter in essence, “Get over your pride and self-sufficiency.”
It’s easy for Christians to go overboard on,“It’s more blessed to give than to receive.” It can start to get competitive, who can give most? Adding up your good deeds becomes a point of pride. God forbid you would actually have to accept help!
That’s why I love the stories about Jesus eating dinner at everyone’s house, letting perfume be poured on his head, sending out the disciples for fish and loaves. I mean, you never see him cooking the meals or actually pulling in a net of fish, do you? The guy knew how to let other people love him!
I believe that when you refuse help when you need it, you are stunting the spiritual growth of another. That person doesn’t get to feel the joy in giving.You don’t get to feel your own humanity and gratitude by accepting. Here’s the new motto: “It’s blessed to give and receive.”
So I was determined to receive care gratefully and to become adept at shifting from co-worker to patient, although I knew the nurses would never truly think of me as a patient. And that was all right with me.
An Angel by Any Other Name
I know from experience that as a chaplain, I didn’t connect with everyone. Jackson was a good example, a sweet young guy with prostate cancer. By young I mean forty, which is a young (and bad) age at which to get prostate cancer.
The first time I met him he told me about working on a fishing boat in Alaska. I asked if there were many African Americans working up there and he said, no, he was the only one on the crew. “I don’t understand why,” he said. “Because you can make a lot of money.”
He always came in with his mom, and she and I connected, but I felt bad about chatting with her as Jackson just stared at the wall. So I visited a few times and that was it. I had been on chemo for about a month and felt as if I was adjusting to it. I ate saltines and Lorna Doones all day long to keep my nausea down. One afternoon, miracle of miracles, I was all caught up on my charting and had nothing to do. I looked again at the schedule and saw that Jackson was coming in. “What the heck,” I thought, “I’ll give it another try.”
It was pretty much the same story, he was blank and bored until I said something about being a writer. He sat up. “Did you say you’re a writer? I’m a writer, too!”
What? How had I missed this? He told me how he went to the University of Washington and took a creative writing class with Charles Johnson and had written this story for which he received an “A” and wanted to turn it into a book.
“Wow,” I said. “Bring it in! I’d love to see it.” I hadn’t forgotten my experience with Mr. Christos and inwardly vowed that I would say only positive things. The next week he brought in thirty pages. I had never seen him so animated or excited.
“I got my nephew’s old computer and printer. Took me a long time to find the story, but I worked on it some more.” He handed it to me proudly.
“I can’t wait to read it,” I said.
“You’re gonna make some corrections, right? Help me improve it? Give me comments?”
“Uh—sure. Just little corrections.”
So I took it home. He wrote a story about a young boy named Richard. Going by the fact that Richard was learning his times tables, he was in second or third grade. But his internal dialogue sounded like a philosophy professor on mushrooms. Richard and some of his schoolmates get asked to cut down a Christmas tree. Mike, one of the boys in the group, is Richard’s archenemy.
The teacher gives them all axes. In my comments I said nothing about the wisdom and improbability of handing out axes to eight-year-olds. They go out into the woods and tension mounts. They find a rabbit, chase it, and Richard kills it by throwing his ax at it. Again, I made no comments on the likelihood of an eight-year-old being able to do this.
They make a fire, roast the rabbit, and eat it. They get thirsty from eating the rab
bit.They go to steal some water from the garden hose of a white man who comes out with a shotgun and threatened to shoot them. Richard and Mike fight, Mike almost drowns, but another guy pulls him out of the river. They reminisce about their encounters with white people. These passages were violent and hate-filled, and I wanted to weep. It was painful to read.
The next week I gave the corrected copy back to him and his first question was, “How much in royalties do you think I’ll make?” I explained to him that perhaps he was getting a little ahead of himself and that at this point, asking about royalties was like looking at a foal and asking where we should build the shelves for his Triple Crown trophies.
So every week I gave him back a corrected copy, and he would bring me his latest work plus the rewritten earlier stuff.
One week I said to him, “Jackson, it almost seems like you plugged every other word into your thesaurus and used the biggest one.”
