by Debra Jarvis
Here it was December and I had seen parents feverishly shopping and buying their children all kinds of toys and games and books and clothes. How many parents had thought of giving their children the gift of learning how to listen to God and listen to their own voice? Because I was fighting back tears, my voice was sort of thick when I said, “What an incredible gift you’ve given her.”
“Thank you.”
Get very still and get very quiet. I felt as if I spent most of my time as a chaplain telling people to check in with their breath, to quiet themselves, to listen.What if we all had learned to do this as children? Maybe I’d be out of a job.
There are times when I feel as if I am in the presence of some kind of Higher Being.That afternoon with Lisa I felt like that. She was thoughtful and filled with peace. I know some people who work with energy say that energy is just energy. Period. But I disagree. I’ve been with people whose energy felt scattered or chaotic or nervous. Maybe it’s a matter of semantics. But Lisa’s energy felt divine, and I wanted to sit there and bask in it.
Then she said, “It’s wonderful to sit in the silence with you.”
It’s wonderful to sit in the silence with you. The words wrapped around me in that way I recognized as Spirit speaking. We sat for quite a long time holding hands in the silence, and I didn’t tell her about my chemo anniversary.
Chemo Forever
There are three kinds of chemotherapy patients: (1) those, like me, who begin chemo and finish it; (2) those who have had chemo, have a recurrence, and are now on chemo again; and (3) those who never get off chemo.
Of course those of us in category 1 hope and pray we will never be put into categories 2 or 3. I’ve seen patients in all three categories. You might think the ones who are the most freaked are those who have a recurrence. Some people with a recurrence say at least they have a better idea of what to expect, because they know the routine. Other people feel they are going into a serious battle for their lives.
Getting a recurrence is like the scene in The Shining where Jack Nicholson hacks through the door with an axe and says in that evil voice, “Here’s Johnny!” Except when you get a recurrence it’s, “Here’s cancer!” Again.
If you do get a recurrence, you hope you’ll get chemo and finish it, just like with your initial diagnosis. But that doesn’t always happen.Which brings me to category 3, never getting off chemo.
I have met many patients in this category who have come to a tentative peace about this. I say “tentative” because many people have told me every once in a while they will get all in a twirl about the fact that they are never getting off chemo. Chemo has failed to cure them. So total eradication being impossible, the idea is to keep the cancer from taking over. They think of their cancer as a chronic illness, like diabetes, something that will always have to be treated, because without treatment they will die sooner.
One of the problems with being in this category is that people don’t know how to respond to someone on permanent or maintenance chemo.
My friend Stephanie says this happens to her all the time. “People will say, ‘You look great! Are you done with chemo?’ And I’ll say, ‘Oh, no, I’m never getting off chemo.’ They look just stricken!” she said.
“They don’t realize that my head is not in the same place it was with the very first big-slam-kill-it-all chemo. This maintenance chemo is in the background of my life. It’s hard for some people to get that and they feel guilty that they haven’t called or brought food. I have to explain that I don’t need support in the same way now. Then there is this horrible awkwardness and they struggle to change the subject.”
My guess is that their thoughts go something like this: “Never off chemo? Does that mean they haven’t gotten rid of your cancer? If you go off chemo will you die?” The answers are yes, yes, and yes. It’s this last part about death that really freaks people out.
I was in the clinic when the sister of a permanent chemo patient said to me, “I know this is keeping my brother alive, but I just can’t believe that I’m looking at someone who is actually going to die.”
I broke it to her gently that everyone she looks at is going to die. She left for the cafeteria in a state of shock.
If only we could get a little bit comfortable thinking about death. Death is supposed to happen.
What if no one wanted to leave a restaurant after the meal? The manager would come out and say, “You come, you eat, you leave.This is what you’re supposed to do.”
The problem is that we want to leave only after we’ve had the cocktail, appetizer, entrée, wine, salad, cheese course, dessert, coffee, after-dinner drinks, and a breath mint. It’s sad but true that some people never make it to dessert or even to the entrée. That totally sucks. But nobody can stay in the restaurant forever.
We all want death to come when we are ninety-nine years old and fast asleep. I’m not saying we shouldn’t grieve or that death is no big deal. But most people I meet can’t even think about death and certainly don’t want to talk about it. That’s why the idea of never getting off chemo can be so mind blowing—it means death is just around the corner.
Most people in this category have a strong hope that some new experimental drug in the pipeline will save them. This is not an unrealistic hope. I saw this happen with AIDS and the multi-drug cocktails that yanked people from the grave. Because of newly discovered drugs, I’ve seen women who have inflammatory breast cancer live for years instead of months. So it is not crazy to hope for a miracle therapy—it’s crazy not to.
So what do you say to someone who is on long-term chemo? “How are you doing with that?” or “How is this different from your other chemo?” or “Oh, wow. What do you do when you want to take vacation?” Force yourself to stay with it until the person on chemo changes the subject or until there is a 6.0 earthquake where you both are standing.
Some people with cancer never get back anything resembling their old lives. Sometimes the most they get is just life. Period.
This was the case with Elizabeth. She was twenty-four and had a one-month-old baby and a three-year-old at the time of her diagnosis. I met her at a cancer retreat I was facilitating four years ago. She’s never been off chemo for more than a couple of months.
Knowing Elizabeth was like witnessing a bizarre drawn out version of the Stations of the Cross. Condemned to death at age twenty-five with Stage IV breast cancer.
“But we’ll give you the best treatment we have,” her doctors said. Now there’s a cross to bear. She was not one of those women who sailed through chemo. She didn’t have nausea, she had severe nausea—and exhaustion and diarrhea. The shots she gave herself to bring her white blood cell count up didn’t give her “moderate” pain, they gave her severe pain.
I hadn’t heard from her in a while, and out of the blue I received an e-mail. She wrote it at 3 a.m. Even after taking two sleeping pills, she was wide awake.
I’m just struggling. I seem to know somewhere in the recesses of my brain that the only path to peace is through the Higher Power, but I’m stuck from there on out.
I am obsessed with dying. Not afraid of it, really, just obsessed. How are my kids going to fare? My husband? Who will make sure the turtle gets fed? Who will pop the pimples on Larry’s back? What will I wear to be buried in? It goes on and on. It starts the first thing when I wake up in the morning and rarely lets up.
My disease is relatively stable, but I still have cancer in my liver and lungs.The ballpark guess for my prognosis is one to two years. So it’s not like death is imminent for me yet, but it’s still a lot sooner than I can be comfortable with, and I just can’t stop thinking about it.
I got an e-mail update from the sister of my friend Tina, who passed away last May. Her sister wrote about the sense of peace everyone’s feeling now that Tina is gone and how the last two years of Tina’s life brought so much pain and anger, it was a relief to be past that.
It wasn’t insensitively written at all. I understood completely what
she was saying. It just makes me want to give that peace to my loved ones. I’m not suicidal or anything like that. But thinking that after the grief fades, my loved ones will be able to move forward, find joy again, while we are all now just riding this damned roller coaster like prisoners of war.
I guess I’m feeling tempted to give up. I know it’s not time yet. I know I can’t.The rational part of me knows all of this. But the pain and suffering this is causing everyone in my life, including myself, is just about unbearable right this minute, and knowing that there is peace waiting in the wings for all of us involved sounds a little tempting.
There is a lot of good in my life, too. But the good stuff is just as intense as the bad stuff. So mix it all up and you’ve just got a whole lot of intensity from every point in the spectrum, and it has coagulated to create this volatile bomb just about ready to go off in my head!
The next day I made myself a cup of tea and called her. She went over everything in the e-mail in more detail, speaking rapidly, barely taking a breath for over a half hour. You don’t try to stop Niagara Falls; you stand in awe of it. But unlike the falls, I knew that when she was ready, Elizabeth would stop. Sometimes you just have to listen until someone is all talked out.
Her energy seemed so scattered, so I told her about listening for her breath as a way of pulling her energy back, a way of collecting herself.
“I know, I know,” she said. “I should meditate. But I just don’t see how anyone with small children can meditate.”
Everyone has the picture of meditation as sitting for a half hour in the Lotus position. What if you can just take a mindful breath here and a mindful breath there? Doesn’t this all add up?
I like to think of these mindful moments like calories. You can eat two thousand calories in one meal or you can eat small meals all day long. Either way, you end up with two thousand calories. You have one hundred mindful moments that last approximately fifteen seconds, and what does that add up to? About a half hour.
Anyone who meditates will tell you that very often, out of thirty minutes, exactly two minutes are spent being completely present. So I figure mindful moments are better than nothing.
“Elizabeth,” I said.“I don’t know how mothers with small children even manage to have a bowel movement, let alone meditate. So think of checking in with your breath as a kind of meditation for mothers you can do at any time.”
“I certainly spend a lot of time in the bathroom these days.”
“Perfect. This is a great place to check in with your breath—although I wouldn’t advise deep breathing.
She laughed for the first time in thirty minutes. Humor can be a way of avoiding pain, but other times, it is grounding and brings you into the present.
“I try so hard,” she said, “I really do.”
“You have my permission to stop trying so hard. What if you just feel your feelings and don’t resist?”
“That’s it! I resist, I’m resisting, yes, that’s it, because I don’t like what is happening. But it is what it is, it’s my journey. I’m in a support group that is really good because it is comprised of people who really get it, meaning they have cancer. But here’s the problem with the people: they die. Two people last week told us they had just enrolled in a hospice program and I think, when is that going to happen to me? When am I going to die?”
The falls had started again. I listened and sipped my tea.
“Then there is my Mormon family who can barely speak to me now because I’ve taken my name off the roll. I’ve renounced my faith and my mother says,‘When you die you will go to Outer Darkness.’ That’s what they call it, Outer Darkness. So I don’t talk with her much, and that leaves my friends out here in the sticks who are basically all fundamentalist Christians who love me but say they feel really bad I am going to Hell because I’m not saved.
“So many people feel bad because of me. And maybe it would be better if I did die soon so they can get on with their lives. But I’m twenty-nine years old, and this isn’t how I thought my life would be. If I didn’t have cancer I could finish school and be a productive member of society or at least help with the finances so the burden wouldn’t be on Larry.”
She stopped and I waited a while. Sometimes you have to give people a little space to take a breath, finish a thought, swallow. Then she said quietly, “I know it’s a lot.”
It was a lot but not the biggest anxiety assortment I’d ever encountered.“So let’s start with you wondering when you’re going to die,” I said. “When you’re waiting to die you’re full of all kinds of expectations, you are in the future, and you’re missing what is in front of you at this moment.What if you just lived your life?”
“Okay,” she said softly.“But what about the people who think I’m going to Hell?”
“I have friends like that, too,” I said. “Fundamentalist Christians are of my same faith, and it totally ticks me off. So I pretend they are believers of some very obscure religion of which I am very respectful. If they tell me I am going to Hell, I think, how fascinating this religion is! Because when I think of them this way, I can accept them.”
“That’s what you think, but what do you do, Debra?”
“I love them just the way I’d want them to love me.”
“Oh, gosh, of course.”
“Now what’s this about your family getting on with their lives? We have this idea that our lives are on a trajectory that excludes pain or death or grief. So we think a painful experience blocks that path.Your children’s lives haven’t stopped because you have cancer. It’s not like Elizabeth-and-her-cancer is a big boulder in the middle of the road and everyone is waiting for you to die so they can move on. Everyone’s life is going on. Tina’s sister just wanted her own pain and grief over Tina’s cancer to end. Yes, it was a relief when Tina died, but no one’s life stopped. Their normal activities stopped, what they wanted to do stopped, but their lives didn’t stop.That was their lives.”
I paused for a moment to let that sink in. I had to think about it myself, how we have this notion of life moving forward in a linear way, and we think it’s only moving forward if we’re doing what we want to do, and we don’t experience any pain.
You never hear anyone say,“Well, I’m glad that beautiful cruise to Puerto Vallarta is over so now I can get on with my life.”
Before we hung up she said, “You know, I’d like to shadow you some day.”
“Oh, no. You’d be so disillusioned. Personally, I don’t know how Jesus could stand having all those disciples around day and night. Not a moment to pass a little gas or pick his nose.”
You don’t know the half of it.
Like a Virgin
Chemotherapy proved to me (as if I didn’t know it already) that love is not about sex. How could it be that Wes and I felt more love for one another than ever and were having less sex than ever?
First, there’s the mastectomy, and there is no way you want to fool around while you are healing. I think I can safely say most men don’t find Jackson-Pratt drains particularly appealing.
Then there is the chemotherapy that makes you feel like a piece of human fungus, and chemopause makes your vagina feel as if it’s been sitting out on the Mojave desert for a few years. Add to that total loss of libido and physical sensation. All this makes for one wild, lusty night of reading in bed. Or watching videos.
I tried to think lustful thoughts, but I just found it exhausting. It wasn’t like we didn’t try, and this is when I discovered I was once again a virgin. If you’re a woman and you think about your first sexual experience, you may remember it wasn’t all that comfortable. I thanked God it was dark, and Wes couldn’t see me grimacing.
I tried the Estring, which is a rubber ring that fits up into your vagina and gives your tissues a little hit of estrogen. I imagined it like some kind of evil drug dealer who doled out just enough estrogen to keep my tissues begging for more. I think it did juice things up a bit. The problem was I’m a small woman and with
that ring taking up all that space, there wasn’t room for anything else, if you get my drift. It’s like parking a Humvee in a one-car garage and then trying to drive in a Volkswagen bus. As my oncologist said, “One size fits most.”
We tried drowning ourselves in gallons of lubricant. The experience was still one of trying to thread a hot dog through the eye of a needle.
“Houston, we need to abort the docking procedure,” I said one night.
“Roger on that,” Wes said.
At least we kept our sense of humor.
Other patients have talked to me about this, too. Heidi said she felt her clitoris was about as sensitive as her knee.“I finally had to tell my husband to stop touching me down there,” she said.“He couldn’t believe it because we had a great sex life. I told him, ‘It’s not you. It’s just that no one is home down there!’”