by Debra Jarvis
Two days later, I was out walking in our nearby park. Sure, I was a little glassy-eyed and hanging onto Wes, but I was out walking. I could see that after my incisions healed, I was going to return to my life. I decided I would be religious about performing my post-op stretching so I could go back to yoga class as soon as possible.
A few days later, we had just finished dinner, and Wes was cleaning up. My laptop was on the kitchen table, so out of curiosity, I decided to go online and read my operative report. It was pretty boring: a lot technical stuff about my “clavipectoral fascia” and “nipple areolar complex.” It said nothing about how I looked in that dorky shower cap. Maybe the pathology report was more interesting.
It seemed pretty boring, too. I yelled to Wes over the dishwasher, “They have the audacity to describe my pearl-like lymph nodes as, ‘tan-brown!’” We laughed and I scrolled down to the final diagnosis.
“Micrometastatic carcinoma in one of three sentinel lymph nodes.”
“What?!” I screamed. Wes dropped the pot he was washing and came to the table and read over my shoulder. He put his arms around me, and I could hear him swallowing.
“It’s micrometastases (micromets),” he whispered. “Maybe it’s nothing.”
My surgeon said my lymph nodes looked good. I fell for it. But how could he possibly tell? They were micromets—he didn’t have microscopes at the end of his eyes! But even micromets scared the hell out of me, because I knew that once cancer cells were in my lymph nodes, they could go anywhere. I started sobbing, “I don’t want to be in the chemo chair!”
We both sat there staring at the screen, and I cried and cried and cried. Then I stopped because I realized we didn’t really know what this meant or what we should do. Welcome to the No Clue Zone.
Wes was so stunned that the next day he called the lab and asked to review the slides with a pathologist.“I just have to see for myself,” he said.
When he got home that night I asked, “What did you see?”
“Cancer cells.”
No Clue Zone
A few months after I started working at the SCCA I had a new chemo patient say to me, “This is the happiest day of my life.”
“What?” I asked incredulously.
She paused for a moment and then said,“Okay, well it’s the second happiest day of my life.The first was when I finally got diagnosed.”
She went on to explain that for months she knew something was wrong, but nobody could figure it out. When at last she was correctly diagnosed with colon cancer, she was thrilled.
“It wasn’t that I was happy to have cancer, you understand. It’s just that I hated feeling sick and not knowing why. And then once they diagnosed me, they didn’t yet know if I should have surgery first or chemo. I needed tests. I had to wait for results. Then my doctors had to decide. I thought I would go crazy.”
I understand this now. After the pathology report came back with a positive node, we had to change direction, but which direction? It’s like driving on the freeway and realizing you’ve taken the wrong exit.You have to get back on the freeway and take a different exit, but you don’t yet know which one to take. So you’re sort of idling on the entrance ramp, imagining all the possible turns.
It’s very hard to remain in the present moment when you’re in this zone. I wanted direction, I wanted a plan, and let’s face it, I wanted control. I wanted to know what we were going to do. But the No Clue Zone is not about doing. It’s about being.
As often happens, I remembered a conversation I had a few weeks earlier, but this time it was as if I was talking to myself.
A woman came in to talk with me because she couldn’t get over her guilt about not seeing her doctor immediately in spite of feeling a lump in her breast. She felt bad about the burden it put upon her family for her to go through chemo and radiation and surgery.They removed all the cancer, and she was considered disease-free. But she was also living in constant fear of a recurrence. She sat across the table from me with her legs crossed, nervously shaking her foot.
“So then you’re missing out on whatever is happening in the present,” I said.
“What do you mean?” she asked.
“Well, when you are fearful, you’re living in the future, right? You aren’t living in the past, because you can’t fear the past. That’s over.”
She stopped her nervous foot shaking and nodded, so I continued. “Then when you’re feeling guilty, you are living in the past. You can’t feel guilty about the future, because you haven’t done anything yet.”
I could see that she immediately understood what I was talking about. She leaned forward and put her hands on the table. “Okay, I get that. But just how am I supposed to keep myself in the present?”
I knew the answer to this one. I felt like the student who studied for the test and was now getting all the right questions. “You want to stay in your body to keep in the present moment. One way to do that is to check in with your breath. Just notice—in-breath or out-breath? Mouth or nose? Don’t try to change anything, just notice. Noticing your breath keeps you in your body and in the present.”
Well, she really liked that. And here I was weeks later, taking my own advice—again. I really didn’t feel any fear until the All-Star Parade of Possible Future Scenarios came marching by. When I was truly in the present I felt content.This whole “Be here now,” thing is old as dirt and tons of people have written about it: Ram Dass, Gary Zukav, Eckhardt Tolle.
I think Jesus was saying the same thing. The disciples are jumping up and down asking, “When is the kingdom of God coming?” They’re fantasizing about something they think is way off in the future.
And Jesus says, “The kingdom of God is now.”
Of course, this totally bums them out because they are looking forward to the glory of an everlasting all night party. I’m sure when Jesus told them, “In my Father’s house are many rooms,” they were thinking, “Dude—party!”
Speaking of Jesus, don’t think I didn’t have a word or two with Mr. Martha Miyagi about this positive node.
“Just what is the point of this? How are you going to use this little development?”
Triple M was curiously silent on this.
So I didn’t freak out, but I couldn’t help but wonder: Am I going to get chemo? Have more nodes removed? Radiation? And what am I going to tell my mother?
Role Reversal
Like a child facing her first day of kindergarten, my mother was terrified and panicked and didn’t know what to expect. I, like a comforting parent, was calm and resolute and told her what would happen when she went in for her lumpectomy.
“Make sure they give you some anti-anxiety medication—Ativan, Valium, or something before they start the lymph node mapping,” I advised.
I didn’t tell her that I had nothing but a local anesthetic when they were sticking needles under my nipple.The kind doctor with a sexy French accent said, “We do not stick the needle in your nipple.We go under the nipple.” Oh, yeah, that’s much better!
I thought about this experience some more and said, “Mom, I’m going to call your doctor and ask her to give you a little something to take the edge off.” That would be easier on the staff than picking my mother’s fingernails out of the ceiling.
She was so nervous about her surgery, I immediately knew not to tell her that I had a positive lymph node. I was afraid it could be fatal and here’s why:
My mom is a silent worrier. She’s not real big on discussing her feelings. She feels deeply, but she doesn’t emote, so she can come across as distant. As a child, I could tell when she was worried because she would fall asleep on the couch, and her mouth would be pinched in a frown. She would have two creases between her eyebrows deep enough to lay a toothpick down in each one. How someone could fall asleep without her face relaxing is still a mystery to me.
I knew if I told her about my positive lymph node she would take the worry into the operating room with her. There she would be completely sedate
d, but her anesthesiologist would look at her and say,“I don’t know—look at those eyebrows. I’d better give her a little more.” Overdose! Obviously I couldn’t take that chance. I’d tell her about my node when she was out of surgery.
This was the moment where I felt the beginning of the role reversal between Mom and me. I had hints of it before: cleaning her house and cooking for her when she had gall bladder surgery; taking charge of the funeral when my grandmother died.
Not telling her about my lymph node was not the same as hiding the fact that I had slept with my college boyfriend—that was just plain self-preservation. No, this was different. For the first time in my life, she seemed small and vulnerable, and I wanted to protect her, to shield her from worry.
In the past, it always seemed as if we went right back to our old ways once everything got back to normal. But this time I knew there was no going back. I would always think about taking care of her from now on.
She was not going to grow stronger and more independent in the next ten years.The reverse was true.
Three
THE PLAN!
From: Debra
Date: May 18
To: Everyone
Subject: The Plan!
Dear Family and Friends,
Because I mentioned well-intentioned people saying “stupid, hurtful” things I received a mass of messages apologizing. It was not any of you, but actually someone who was visiting us.
He was going on about how cancer would force me to make changes in my life, I’d appreciate the small things, I would learn what’s really important, and this was my wake-up call. These are golden words coming from someone who is speaking about their own experience. But it is instant crap when someone is telling you how you’re going to feel.
He kind of forgot that I’ve been a chaplain for twenty years and that maybe I’ve learned something from my patients. He also said that now I would think about death, and I about fell over myself laughing. That is my favorite subject!
So I’m going to receive six months of CMF: a daily pill and a weekly intravenous infusion. They told me that CMF stands for Cytoxan, methotrexate and 5-fluorouracil. I know that it stands for: Crushed cockroach, Monkey vomit, and Floor sweepings. If that doesn’t make cancer cells want to vacate my body, I don’t know what will.
Of course, the chemo will put me into immediate menopause. This means that instead of taking the elevator and getting off on the menopause floor, I will be hurtling down the elevator shaft. Maybe it won’t be so bad. I believe General Custer said something similar.
My plan (which I am holding lightly and gently) is to continue to work Tuesday, Wednesday, and Thursday. Then, on Thursday afternoon, instead of my usual cup of tea, I’ll have my chemo. Just a slight change. And of course, I can still have tea.
Wes and I are truly doing great. My sister is here right now, and we are having a blast. She asked me what she could do for me. In a true test of sibling loyalty I said, “Scrub my shower.” She was thrilled!
Physically I am doing well. My only complaint is about the colony of Mexican jumping beans living in my armpit, very close to my node scar. They seem to be having a fiesta, complete with Mariachi band, dancing at all hours. So it’s constant twitching and I can’t make it stop.
So that’s the report. We are going to Wes’s family reunion in Mexico for five days at the end of May. (Perhaps I can convince the jumping beans to return home.) My plan is to be back at work on June 14 and to get my first dose on the 16th.
I really miss you all so much. Thanks for your sweet cards and messages. And thanks for just being there.
Love and Hugs,
Debra
Wait, Wait Don’t Tell Me
It wasn’t as if our guest hadn’t gone through his own very frightening health crisis, because he had. And perhaps people had spouted all kinds of advice to him, and therefore he thought that was the thing he should do. But it wasn’t.
We were sitting out on our deck and Wes, having made a lovely dinner, was now in the house getting dessert. It was then that the sermon began.
“You’re going to make some big changes in your life. This is really going to make you appreciate the small things. And—you’ll start thinking about death.” He let out a big sigh and stretched his arms over his head. “Yup, Deb.This is your wake-up call.”
“Bullshit on that.” I said it so venomously that he straightened up as if he might have to protect himself. “What in the hell do you think I’ve been doing for the past twenty years? You think I’ve learned nothing? My wake-up call? Are you saying I’ve been asleep all this time? I’m happy with my life and my job and the choices I’ve made. And the only change I’m going to make now is that I won’t sit here and smile and nod when people like you say bullshit like that!”
He didn’t have a chance to respond because Wes came out wearing a big smile and carrying a huge plate of strawberry shortcake. “Anyone for dessert?”
“Excuse me.” I could not stay at the table. I went down into our basement, closed the door, and pressed my hot face against our washing machine.Yes, I was on narcotics for pain, but “Bullshit on that”? How uncreative.Why couldn’t I have quoted scripture?
I should have quoted Job 12:2, 5: “What you know, I know also. I am not inferior to you. Oh, that you would be completely silent! Then you would be wise.” Or Job 13:12! “Your memorable sayings are proverbs of ashes, your defenses are defenses of clay. Be silent, leave me alone, that I may speak.”
Truly, I say unto you, that would have been perfect. Because when you are in the No Clue Zone (as we still were that day) you need people to help you speak, to help you sort out your feelings and give them a voice. You don’t need platitudes or people telling you everything will be all right or telling you what your experience means.
But I could never have quoted Job because I am horrible at remembering Scripture, and I usually get it all wrong. I used to keep Psalm 33 memorized because years ago my hospice patients, especially the older ones, liked me to quote Psalms. But I’ve forgotten everything and standing in the basement with my head on the washer the only verse I could remember was, “Jesus wept.” So I did.
I didn’t need or want cancer to be my spiritual wake-up call. If I had to have one, well, why couldn’t it come on a nice silent retreat? Or while reading poetry or Rumi? Or receiving Communion, or even something down-to-earth like pulling weeds?
While weeping on our washing machine, I noticed my rayon blouse that I had hung to dry. It was a stiff and wrinkled mess. My intention had been to save it from the trauma of dry cleaning so I hand washed it, but it turned out badly. I wasn’t even sure I could salvage it.
Your intention was good, but the result was bad.
Mr. Martha Miyagi was talking to me in the basement. I wanted to crawl inside of our top-loading washer and close the lid. Whither can I go from thy spirit? It didn’t matter because I could hear the Presence inside me suggesting that I judge our friend not on his behavior, but on his intention.
I do believe that intention matters. He would never want to hurt, offend, or upset me in any way. And what had made me so angry in the first place? Was I secretly afraid that I had been asleep?
I’d like to report I had the revelation that I couldn’t salvage my blouse, but I could salvage my friendship, so I went back out on the deck. But that didn’t happen. I did go back out on the deck, but only because I wanted the strawberry shortcake, damn it. I’m not proud of the fact that it took me a few days to let go of my resentment. I just kept reminding myself that he was doing the best he could. Everyone is doing the best they can. Plus, carrying around all that righteous indignation just didn’t feel good. So first I had to stop talking about it because every time I told the story, I just fed my poor, wounded self. Then I could let it go.
And I pitched the rayon blouse.
Mail Bonding
While I’m on the subject of words helpful and unhelpful, let me share a few insights about e-mails. First of all, 99
percent of the messages I received were wonderful and met the following criteria: (1) acknowledgment that having cancer sucked, (2) personal compliments and encouragement, and (3) offers of support, either tangible or intangible. It was a bonus if the message was funny or contained humorous attachments like the video of the dog on the skateboard.
One of the first messages I received was from our friend Kevin who owns a beach house. It’s a perfect example of tangible support.