by Debra Jarvis
I kept waiting for him to straighten up, but he stayed hunched over.
“Okay, so what brings you to our fine establishment? I know it’s not the lunches.” He laughed.
“Oh, just a little sarcoma here in my shoulder.” It was then that I realized he was sitting up and that the hunch was an enormous tumor. He looked like he was wearing football pads on one shoulder. It took me a few moments to take it all in. “It’s kinda big,” he said apologetically.
“Are we giving you chemo?” I asked.
“I was getting chemo, but now I come in every day for a dressing change.
On cue his nurse came in. “Alrighty, are you ready?” I knew she said this for my benefit and to give him a moment to ask me to leave if he wanted.
“Do you mind if I stay?” I asked.
“If you can stand it. It’s pretty disgusting,” he said.
“Oh, I love gross, oozing wounds.”
His nurse carefully peeled off the old dressing which was wet and yellow. I peered over her shoulder. He was right. It was disgusting—raw and bloody and oozing yellow pus. The wound was big, about the size of a pie plate. She had a hard time keeping the gauze on because his shoulder was so misshapen and it was too painful to stick anything to his skin. It was almost as if he needed something he could wear tight against him that could keep the dressing in place. Something like a tight and stretchy vest. Hey . . . I could make a tight and stretchy vest.
After work I drove straight to the fabric store. I flipped through the pattern books until I found a simple vest. It was so simple it was dorky, but it would be perfect for my purposes. Spandex—nix the sparkly kind, something manly, not too medical looking. I found a green/blue tie-dye piece of Spandex that was pretty low key.The blue matches his eyes, I thought. I knew he couldn’t manage zippers and buttons, so I bought Velcro tape to close it.
When Wes came home that night I was sitting at my serger.
“You’re sewing?” he asked.
“Special project. I’m almost done.”
I finished it that night and took it in to work with me the next morning. I showed his nurse. “Oh, my gosh, it’s perfect!” she said.
When Rick came in for his dressing change I was right there. I couldn’t wait to show him.“Ta-da!” He blinked and looked confused. “I call it the Bandage Vest,” I said putting it on. “Except it will be very snug on you and hold the dressing in place.”
“Thanks. I—I don’t know what to say.”
“‘Thanks’ is good. So you weren’t here long enough yesterday for me to hear your whole story. How were you diagnosed?”
I settled back in a chair with coffee in my red commuter cup.
“I’m not really from Seattle. I’m really from Virginia . . .” He kept talking, but I couldn’t keep my eyes off his vest. It held the dressing in place and didn’t hurt his skin like the adhesive. I’d made the armholes really big so that the tumor would fit through. The color was perfect for him. Maybe I should patent it?
“... so first they told me I had cancer, then they told me I had AIDS.”
“What?” Jerked out of my self-adoration, I choked on my coffee and started coughing.
“Yeah. But the cancer, the AIDS, that wasn’t the worst part. The worst part was that my girlfriend Leslie didn’t tell me she was HIV positive. She didn’t know how much I loved her. She was afraid I would reject her, so she just walked out and never came back. But I loved her, and if she had gotten sick I would have taken care of her.”
“Oh, my God, Rick! That is just a bit much. What’s getting you through this, because you are totally off the stress scale.”
“I don’t know. I just keep going and praying.”
I knew he didn’t want to talk about his prayer life so I couldn’t bring that up. What about his girlfriend? “Does Leslie know she infected you?” I asked.
“Yeah, I called her in Virginia and told her everything.”
“What did she say?”
“She was crying on the phone, she was really upset and couldn’t talk. I tried calling her back. For days I kept calling. Finally someone answered—her landlord.”
“So she moved out?”
“No. She killed herself.”
This last revelation stunned me into silence. We didn’t speak for a long time. Rick just stared down at the blankets on the bed, and I looked out the window. I wondered what had happened to Leslie that she didn’t realize this wonderful man loved her? Or was she so wounded that she felt she was unlovable? And who had wounded her?
Finally he spoke.
“It was the betrayal that hurt the most. Have you ever been betrayed?”
“Yes. It’s excruciating.”
“And you wonder if you can trust anyone ever again.”
I had no wisdom, no advice, no useful information to give him. But I could witness his suffering, and that in itself was healing. In spite of my having been mentally absent for a few moments, I had never gone so deeply with a patient so quickly. I think it happened because on some subconscious level, both Rick and I knew he had so little time.
When I saw him the next week, he wasn’t wearing the vest because it was now too small for him. His tumor was doubling every twenty-four hours. He could no longer move his arm, and he begged the doctors to cut it off.
The part of his story I missed was that both his parents were dead, and he was diagnosed when he was out here on vacation, so he just stayed in Seattle.
The last time I saw him was in the hospital after he’d had surgery to remove his arm, his shoulder and the bulk of the tumor that was growing through his rib cage. By that time he had metastases to his brain and couldn’t talk. He died two days later.
For the next few weeks I chose to believe in Heaven because I wanted Rick to be together with Leslie. I wanted Heaven to be like a Versed/Fentanyl IV drip where you awaken and forget all your painful experiences on Earth. I wanted them to be healthy and in one another’s arms, loving and forgiving.
And I wanted Jesus to be there with a big smile and say, “Welcome! What brings you to our fine establishment? I know it’s not the lunches.”
Bratitude
I knew that many people didn’t know about these experiences I had with people who seemed to have all the bad luck, sorrow, and grief in the world. But many of them did know and still didn’t understand why I wasn’t furious or miserable about my own diagnosis.
Sometimes I felt as if they were trying to provoke me into anger or depression:“But you’re in such good shape and so healthy and it still didn’t prevent you from getting breast cancer.”
It’s true that I exercised and ate boatloads of salmon and broccoli, and drank green tea and kefir, and took vitamins and supplements, and went to church and yoga classes, and read the New Yorker. But I did all that because it felt good, not because I was trying to prevent cancer.
I don’t think I’m being Pollyanna (talk about denial!) when I say I had lots for which to be grateful. I was the poster child for early detection through mammogram. I had an early stage cancer even though it got upgraded to Stage II. I had only one positive lymph node out of three. I didn’t have a tumor that was doubling every twenty-four hours.
Not only had I seen people come in with much worse cancer than me, but what about people all over the world who don’t even get diagnosed, let alone treated?
I’ll admit that I sometimes get impatient when I hear patients complaining about their treatment. I’ve asked more than once, “Do you not want to be treated?” So far no one has slugged me, because I say it gently, and only after I’m sure they’re done venting and are now on to actually feeding their frustration.
The other thing I get impatient about is doctor bitching. It’s so easy to be angry with doctors when you can’t think of anyone else to dump on. “Now my doctor won’t give me chemo because my counts are low! Now my doctor is putting me on antibiotics because I’ve got an infection!” These are examples of things that are not within a doctor’s control.
I hear stuff like this all the time, and when I do I ask, “Of course you know your doctor can’t control that, so what are you really upset about?”
The answer is often, “Having cancer.” So we go from there. Medical errors, however, are a different deal, although most doctors do not set out to intentionally ruin your day. Be as pissed off as you want about screw-ups, but still remember that like the rest of us, physicians would like to be flawless.
I knew my surgeon did the best he could to get my port-a-catheter line into my subclavian. I had a funky vein, perhaps it zigged where it should have zagged—whatever. It was as if he encountered road construction and had to take a different route. I learned that not every medical procedure can go as planned.
Here is something else I learned from that experience: never wear fancy panties to the hospital—especially ones with bright red poppies on them. Because when I woke up in the recovery room and sat up to barf, the back of my gown opened up. The nurse looked at my panties and screamed, “She’s bleeding!”
And my Wes, who is, uh, familiar with my underwear, said, “No, no, it’s her panties. They’re poppies!” He was quite pleased with himself that he could identify the flower.
It’s Only Temporary
Just before I was diagnosed, I was given a beautiful temporary office. It was temporary because at some point a much bigger wig than I would be hired, and she or he would move in there. Actually, I wasn’t even a wig—more of a hairpiece.
This office not only had a window, but a small round table with two chairs, a long expanse of desk space and a giant filing cabinet. Space was at a premium at the clinic. Think apartments in Manhattan. So it was unbelievable that the chaplain would get this fabulous space.
How did I get this office? The manager of that floor took pity on me because she heard how one day I was wandering through the clinic like Moses in the Sinai, looking for a place to have a confidential conversation with a terminally ill patient. But she warned me that I could be tossed out at any moment.
“Just like life,” I said.
At first I just brought in my desk supplies and protein bars. I was afraid to really move in, because who knew when I would be asked to move out? Then one day, one of the infusion nurses stopped by and said, “Debra, you need to fully inhabit this office! It’s all yours.”
She was right. I knew I was going to die someday, but that didn’t stop me from living. So what was I waiting for? I hung some art, and brought in a lamp, a table runner, my raku jar, and a teapot with Japanese teacups.
I made tea for everyone who came in for an appointment. We sat at the little round table and talked. People loved it because it didn’t feel medical. It felt special. I loved every moment in that office and was so glad that I moved in.
Two months later I was diagnosed and then off six weeks recuperating from surgery. A few days before I was to return, I received a voice mail telling me that they had just hired someone who would be taking the office and that I needed to vacate.
Wes helped me move out, filling a box with my books and emptying the desk drawers. I was wrapping my raku jar in bubble wrap. This was a gift from my hospice team, and they had filled it with their written blessings. They gave it to me after I was fired.
Wes looked up from the box he was packing.“I’m so sorry, baby. I know you loved this office, and you really made it your own.”
I placed my raku jar in the box and said, “You know, it’s okay. It’s not the worst thing that ever happened to me.”
Five
CHEMO SAVVY
From: Debra
Date: July 7
To: Everyone
Subject: Chemo Savvy
Dear Family and Friends,
I see most of you some of the time, but some of you none of the time. So I thought I’d send an update, especially because I’ve been getting worried calls from folks who thought perhaps I was rolling in vomit, which I’m not.
First of all, I have absolutely no regrets that I have chosen to receive my care at the Seattle Cancer Care Alliance. Not only is it ridiculously convenient (I walk to the desk and get my wristband), but I can also guiltlessly eat all the cookies I want on Thursday afternoons. Plus, I get to see many of my co-workers, and we laugh, joke, and they bring me more cookies and bottled water.
Yes, it was weird at first. But after the staff and I all agreed that it had to be weird, it was much easier. Susan G., R.N., who after vowing total love and commitment, and promising to be gentle and take it out if I didn’t like it, was the one who accessed my port for the first time. Like many women, I closed my eyes, and it was over before I knew it.
Before my actual chemo infusion, there was a tearful moment between my nurse Sherry and me. It brought up those questions: How could this happen to one of our own? How do we care for one of our own? Of course, it does happen, and has happened, and I’m afraid to say, statistically will happen again. But I’m happy to say that not only can we care for our own, but we also do it very well. I never had any doubts.
Regarding the Area Formerly Known as My Breast: Last week I assembled a crack team of objective female nurses. Using modern scientific theories and methods including the Krebs cycle, quantum mechanics, Avogadro’s hypothesis, the laws of thermodynamics, and string theory, the consensus was: “Close enough.”
So in a couple of weeks, I will be getting that hateful implant port removed. It sticks out of the side of my “breast” like a nasty cigarette butt, and I can’t wait to be rid of it. Now I know that no doctor, nurse, or chaplain gets up in the morning and says, “Hmm, how can I wreck someone’s day? Can I possibly inflict more pain than necessary?” Nevertheless, I am madly hoping that this procedure goes smoothly.
Chemo comments: My daily oral Cytoxan tablets are a beautiful robin’s egg blue. I call them, “Pills of Light and Consciousness.” My daily Protonix, which stops acid production in my stomach, are the “Pills of Compassion.” So I leave the house in the morning feeling quite enlightened. I am a little more tired these days, but I truly think it’s vicarious fatigue from watching the Tour de France. I find the Alps particularly exhausting.
We have hit upon the right medication for my nausea, which of course, is the most expensive medication. I call these the “reindeer pills” because their name sounds like something Santa Claus would shout from his sleigh: “Ondansetron!” (aka Zofran). Also they keep anything from flying up out of my stomach. I take these for the three days after my infusion, and I’m just fine. I am truly grateful to the pharmaceutical wizard who came up with these babies.
I am also truly grateful to co-workers, friends, and family who bring meals, grocery shop, provide amusing toys (what would I do without Space Mucous?), and weed our garden. This afternoon, I received a totally unsolicited bowl of fresh marinara sauce, pasta, and a berry pie! And I so appreciate the hilarious cards, phone calls, dog portraits, and drawings.
Last week our water heater blew up. I went down into the basement, and floating toward me in four inches of water, was my SCCA portable picnic blanket. (It floats!)
It was 6:30 in the morning, Wes had already left for work, and I couldn’t lift the boxes around the water heater to shut it off. My neighbor arrived in record time, turned it off, and then vacuumed out all the water. Wes, having just arrived at work, turned right around, and furiously pedaled home again.
Other neighbors came over immediately to help me separate hundreds of dripping photographs, and lay them out to dry. The photos covered our entire living room floor. It was an involuntary life review as I was forced to look at high school high jinks, old boyfriends, and regrettable pictures from UC Berkeley.
As painful as this was, I was able to detect the presence of some Unseen Hand in even the most distressing periods of my life. It’s a Presence that I feel now, made known not only through the people in my life, but also through easy-to-miss signs and miracles.
The latest was on the Fourth of July. Wes and I have regularly been doing a two hundred
-step stair-climb down to the Burke-Gilman Trail. It is lush with ferns and ivy and overhung with cedar and fir boughs.„
On the cool early morning of the fourth, we noticed that someone (A mad artist? A cranky child?) had spilled green glitter down the stairs. It was beautiful—as if some mystical pixie had come and blessed us. People going up and down had tracked the glitter all the way to the bottom. Panting and puffing on my way up I remarked to Wes, “It’s hard to see the glitter on every step. But it’s there if I look carefully.”