How Love in the Time of Cancer Began

On Monday night I had the great gift of reading at The Cornelia Street Cafe in New York City. I read a sampling of pieces from my books and blogs including this excerpt from Love in the Time of Cancer:

Intro to LITTOC and Amy Winehouse:

We were friends and then lovers. We began a new life. I’m Max and he is John. Well, not really, but soon you’ll see why we want to keep a modicum of privacy. 

We met years ago and we drank a lot of coffee, talked about books and sports, favorite restaurants and movies we loved. The conversations became more personal. We fell in love and became lovers. We became a couple in simple and complicated ways. We bought a bed and dishes, opened a joint checking account, went grocery shopping and took a vacation together. We took tiny, careful steps to meet each other’s family and friends. 

One day he asked me to drive him for a routine colonoscopy. I had done that for many friends. No big deal. I dropped him off and came back hours later. We sat in the small curtained cubicle waiting for the doctor to sign him out. I asked if he’d prefer for me to wait in the lobby, trying to be discreet, allowing him some privacy for a conversation about body parts. “No”, he said, “The doctor is just going to tell me that I have polyps and then we’ll go have lunch.” 

I remember those words because, of course, that is not what the doctor said. Instead when the doctor came into the little cubicle he looked at the chart, and then at me, and then at John, and then the doctor said, “You have a problem.”

The problem was cancer. Stage three colon cancer and so instead of lunches and vacations there was surgery and doctors offices and oncology. Our courtship was chemo and our honeymoon was caregiving. And there was lasagna—so much lasagna. 

I am lover and caregiver, but I am also a writer and fierce about what was happening to him and to me and to us. 

So I started this blog, “Love in the Time of Cancer” to tell my side of this story. I too am a cancer survivor but this story is about John’s cancer and my caregiving.

I am not objective. I am not unbiased and at times I am not a very nice person. But then, cancer is not very nice either.

I am also writing this because I hope at least one person can have their sanity confirmed by this blog.  I found so little useful information for couples that talks frankly about cancer and relationships and almost nothing that talked about cancer and sex. So, I’m a writer—I knew what I had to do.

Oh yes, there are those pamphlets. About as useless and the one’s I was given at 13 that were called, “You’re a Young Lady Now” and “Growing Up and Liking it.” Most of the official cancer resources have tried to be helpful but there have been so many platitudes and so very much condescension. 

I am also writing this because as Mark Twain said, “I don’t want to hear about the moon from a man who has not been there.” Loving a man with cancer is my moon. Take the next step with me.

Well, our next steps were surgery, then chemo, then marriage then more chemo. It was literally a trial by (chemical) fire. But we made it through. But it wasn’t easy. I made a decision to get really angry. And it was a decision. As I was about to be overcome by sadness and fear I got mad. 

What follows is one of the first pieces that I wrote for Love in the Time of Cancer:

The Amy Winehouse House

A couple of weeks ago we visited a cancer support group to see what kind of help might be available. The place was lovely and there was a long list of activities for patients and caregivers. But a few minutes into the orientation I picked up the whiff of condescension that accrues around cancer. 

Part of it is the pastel approach to surroundings but it’s also apparent in the tone of voice that is used by staff. It’s a cross between the voice you use when talking to a small child and the voice one uses talking to someone in the midst of a psychotic break.

The other hint is the two-handed handshake: the staff member takes both of your hands in hers and it is accompanied by the long, deep gaze which immediately feels like someone told the staff how that “people with cancer need to be seen.” And, well, they are going to make dam sure you know you are seen. 

But the greatest tip-off to the fact that once you have cancer you’ll never be treated like a competent adult again is revealed in the list of activities offered. The counselor took me aside to explain the caregiver activities and told me with that kindergarten teacher lilt in her voice, “We get together on Thursdays and make milkshakes”. Milkshakes! 

I said to John on the way home, “Why would I make milkshakes in a fake TV studio kitchen with a group of strangers because you have cancer?”

That milkshake was my turning point--and it set me to thinking about the kind of cancer support place I’d like to create. Hence the birth of The Amy Winehouse House.  

The tagline at the Amy Winehouse House is: Fuck Cancer.

Our mission: We believe that cancer and its treatment is fierce and so everything around it should meet that fierceness head on and not back down into pastel prettiness. We don’t coddle and we don’t play word games. We don’t parse “living with” versus “dying from” cancer.

At the Amy Winehouse House we are not nice and not pastel. We don’t believe that having cancer makes you nice or pastel either. If you were an ass before you got cancer, now you are an ass with cancer. We don’t ask you to share, process, make crafts or drink smoothies. We offer no bookmarks or anything that has or requires a crocheted cover. 

Activities at the Amy Winehouse House include:

Making martinis

Strip poker night

On Saturday nights we have strippers.

... Yes for girls too.

And we have a smoking room …(if you have cancer and are going to die we want you to enjoy a cigarette on us.)

And of course, we have drug education.  We think of it as self-chemo. Our role model, Amy Winehouse, was an expert on self-chemo. Our self-chemo classes explain how to smoke crack and how to play the cancer card to score medical marijuana. Our movie nights include pornography.  (After all, cancer is pornographic so why get all puppyish and pastel about something that is violent and intrusive.) 

We do have a Board of Directors. All nonprofits do. At The Amy Winehouse House we too have those that we turn to for guidance. These are the folks who help us stay true to the mission. 

So in the spirit of full disclosure here are the members of our Board:

Amy Winehouse 

Keith Richards

Grace Slick

Jackson Pollock

Janice Joplin

Darryl Strawberry

Sherlock Holmes

Frances Phelan

Anna Karenina

John Falstaff

Jimmy Hendrix

Joan Kennedy

As you can imagine, planning the Board meetings can be tricky. And, yes, we do know that some of these folks are dead. You may wonder about that, but that’s kind of the point. People die of cancer so these folks are helpful on that side of things. 

And yes, it has also been pointed out that some of our Board members are, in fact, “fictional.” These too are important Board members. Anyone who has worked in the nonprofit world knows that these are, above all, the best kind of board members to have. You know exactly what they are going to say, and they make a lot less trouble for the staff. 

Later I’ll explain our policies for volunteers. We don’t have tee shirts, but you do have to wear eyeliner. We’ll also talk about why we never liked Lance Armstrong, long before it was popular to dislike him. And yes, …we have bracelets too, but ours say, “Fuck Cancer.”

How to Cut Out Resentment

The centerpiece of caregiving is control. And yes, control is about fear. If I can only control, well, everything, then I can assure we’ll be safe. Even knowing better it is still there.

But control, of course, leads to resentment, and resentment leads to even more discomfort—and to obsession. So we don’t want that. But it’s tricky. Resentment is like tar paper –so sticky. I learned a way out of resentment though. Here is a practice that a friend gave me to try with a person who challenges you. Here is what she suggested:

Early in the morning or late at night—when you can imagine that the other person is sleeping—visualize your highest or best self –the one who is wise and compassionate, and visualize that best part of you going to visit the troublesome person during their sleep. See your higher self using a pair of beautiful golden or jeweled scissors to cut the cord that attaches you to that person. See the cord that connects you falling away. And then allow your highest self to bless that person, allow the blessing to fall on your self too, and then see your higher self return home to you. Say thank you.

Do this visualization as many times as you can over two weeks and you will find that your resentment or struggle with that person will lessen or disappear.

The Bitch in the Test

Yesterday morning I left the house cursing like a cartoon character. The string of profanity coming out of my mouth was G%R&A&*^%$#!!@$!!!--and kind of like James Joyce was writing bad words—the nastiest things all strung together with no punctuation…

At work I was better outwardly but inwardly I was a mess of cranky, scared, sad and, well, just disconnected. Luckily it was Friday and luckily I had a lot of basic tasks to do. Head down and uncomfortable I worked the day away.

But still. Yuck.

John’s son came for dinner so I thought maybe it was the stepfamily stuff. It’s always hovering there in the polite way we talk and how carefully we choose our topics when together. We don’t use these words: wedding, marriage, divorce, Mom, sex or affair, and I’m the only one who will say the word cancer out loud.

And I did. That was it. After dinner John and I talked about plans for the weekend and he reminded me that Sunday plans were out because he’d be doing “The Prep” and it hit me:

His big test. The in-hospital colonoscopy, performed by our favorite surgeon is Monday morning at 7am. Oh. Dam. Oh Dam. All that cranky, out-of-sorts misery is about cancer and chemo and The Test racing toward us.

But we are a different couple three years later. And I am a different woman. I said, “Sit and talk to me.” So we bundled on the bed and talked. I said, “What if..” and he said, “It will go like this…”. And I said, “I’m going to be hard on you this time….” And he said, “I’ll listen this time…” and we laughed. And laughed. We played the “If Cancer Comes Back” Game. We talked about our voodoo beliefs and the deals with God we’ve each been making. I was happy to hear the words “beach” and “diamonds”.

Looking forward to making love tonight because Sunday is not an option. The Prep is a mess in every way with its pills and solutions and salves and timers. But the real prep began last night laughing about what used to be and what could come and how we’ll do it together.

Fighting for Us

This weekend we battled. All the ingredients were there: hungry, tired, bad traffic, a long car ride, a difficult family member, my expectations, his assumptions.

Later, after the swearing was over, we talked about what happened. I need to speak up. He needs to ask questions. We need to plan for the emotions that are provoked by family. I need to take it less personally. He needs to take it more seriously. We both apologized.

But still later, after the make-up sex was over, we talked again and came to this new idea: When we fight we need to fight for the relationship and not against each other. Yes, easier said than done in the heat of the moment, but a new idea, that makes us allies --even in war.

HALT

This is hard. He is on the couch. I am racing from room to room. The to-do list strangles me. I’m mad and I’m tired. HALT they say in AA; notice when you are Hungry Angry Lonely or Tired. I am all four: H A L & T. Stop and breath. Stop and pray. What can I take off my list? What really matters? How important is it?

Caught Off Guard

Ah, and I thought I was so prepared. That’s the trouble with mental rehearsal of troubles. They catch on to your head and then and sneak up from another direction.

Yesterday was oncology check up day. Four month interval with blood tests, looking for the tumor marker and the “Can you open your pants for me?” the belly exam that I so love to tease John about. It does seem that the most attractive PA’s and nurses ask, “Can I see your scars?” and he obliges like they were his etchings.

It was all good, Blood work OK and tummy-tapping just fine. But me: not!

I was a crazy woman all day. Grumbling about minor infractions and feared big events. My scared-girl head took me on a day long roller-coaster of “he doesn’t love me” and “they (any “they” will do) will upset the apple cart of our good life.” Just a day of fearful scenarios that ended—I’m ashamed to say with me saying nasty things and finally sobbing.

Oh duh, cancer got me again.

I guess all’s well that ends well and our day ended with left over pasta, a Yankee win and an early bedtime.

Progress not perfection.

Anger and Ice

A snow day and it begins so lovely. We cuddle and laugh. Sexy play. We dress like little kids bundled up for the snow and we go outside to clean off the cars. And then the mail comes. My blood runs cold. There is more ice in me than on the cars.

Am I a fool? My head screams, “You are an idiot.”
Is he a narcissist? My head whispers, “Look who he really is.”
Why do I stay? My head says, “He doesn’t care.”
Is this love? My head begs, “Please love yourself.”

The snow day has turned from wonderland to prison. I feel trapped and furious with myself. I want to cry but who do I blame? I want to escape but my pride holds me back. If I could turn back the clock how far would I go? If I got in the car how far would I run?

Fighting With a Friend

Maybe this is one of the hardest things about being a friend.
A long time woman friend told me that she feels sorry for my ex—poor guy-- I left him. It took a couple of hours for the anger to really hit me. Yes, I left but this woman was there the whole time, she was my confidant, she knew what he did and what he didn’t do. She knows my faults and my gross imperfections—it’s a long, long list. But “poor Him”?
It makes me feel crazy. And under the crazy and the anger is just a well of hurt.

Whose Drama is It?

His brother says “I guess her view of things is more dramatic.” “Things" meaning cancer, chemo and caregiving. Maybe it was an innocent comment but I got dramatic when I heard that he said that. Part of the problem in this caregiving dance is the discrepancy between John’s presentation of his situation: “I’m fine; neuropathy is annoying, but I’m really quite ok.” Versus my view of this situation: He’s sick, tired, in pain and not able to do many things he did before which does make this hard for me.

Now here is the caregiver dilemma: Is he supposed to whine more so that I don’t look dramatic? Am I supposed to not admit that this is a hard experience because that may imply that he’s giving an edited account? I feel caught in the gap between what he’s telling and what I am experiencing. His brother—rightly perhaps, hears from John that he’s “fine just fine” wonders at my profession of difficulty and requests for help.

OK, for the record this makes me really sorry that I asked for help. Yes I am pouting now but this was my worst fear: that someone would think I was incompetent or unwilling to be the caregiver and this brother is suing the word “dramatic.” Ugh.

What it comes down to is that John has cancer and is going thru chemo and that is his real experience and he gets to tell whomever or no one about what that’s really like. He’s using a careful blend of denial and macho persona. I am not having chemo but I am having caregiving and it is exhausting. So do I accept his view of the world and invalidate mine? What are the politics of caregiver and sick person? Whose reality is it? And for what audience? If there’s a drama here then there has to be an audience.

Grace and Grit

I just read Grace and Grit by Ken Wilber. It’s the story of his relationship with and death of wife Treya Wilber. She was diagnosed with cancer the week they were married. Lived five years with multiple surgeries, treatments and recurrences. The power of the book is that her writings about the relationship and her cancer experience are woven into his story. Both perspectives are available. The other power is the honesty. He writes about his fear and sadness, the ways that he coped, what he gave up, his resentment at giving up so much and powerfully he describes the lowest points when he hated her and she resented him. It’s all there. Then too he writes about how they climbed out of that, got help and the spiritual work for both of them in the last six months of her life.

What helped the most? Reading his take on the pain of caregivers. He describes caregivers as having two problems: the person they are caring for and the dismissal of their own needs and struggles. The tendency of caregivers to discount their own issues—“nothing equals cancer”—but that means it gets harder because the caregiver has whatever the problem in their life is and they have the impacted feelings and resentment. Not pretty but really helpful to see it described.

He also talks about the value of support groups and how much hate is expressed in a support group for caregivers. But what is powerful is that he sees that resentment and all that dark shadowy material as the consequence of the caregiver forgetting how to give love. As Wilber says, if there was no love they would have left already or just become cool. The anger and even hate is the sign that there is love and the caregiver has to find energy and a way to give love again.

I am Sick of Him

I sit on the floor in the restroom at the oncology center and cry silently. I feel my life slipping away. I write this in my journal:


I am sick of him.

I am sick of the New York Yankees.

I am sick of his music.

I am sick of the apples he likes.

I am sick of his schedule.

I am sick of the movies he wants to see.

I am sick of him being sick.

I am sick of him.

Chemo is Coming

Tomorrow is Chemo Day again. John will spend four hours at the oncology center then wear the infusion pump for the next 48 hours. I am nervous each time. What will the blood work say? He has been more tired and his mouth is sore more often now. The pain and tingling in his hands is more frequent so I think that means that the chemo is digging in. Does that mean it’s “working”? Killing cancer cells or just killing all of his fast reproducing cells?

I am recognizing my own unsettledness on this day before chemo. I have the logistics down: I pack the bag: we take books and magazines to read, I take extra magazines to leave at the chemo center (they have terrible magazines there—all about cancer) I also pack our I Pods and snacks for both of us, and take the Blue notebook for taking notes when we meet with the doctor. In this day before chemo I am also bracing myself. I lose him during these chemo weekends and the loss gets longer each time.

He’ll be distracted on Friday, and annoyed by the pump and side effects on Friday and Saturday. The tiredness will begin Saturday so he’ll take more naps and be more drowsy. It’s hard to feel connected in those days. I get needy and so I have learned to make plans for the weekend now.

Being at home watching him sleep on the couch or being aware that he has more pain makes me feel lonely and afraid. Each time I lose a bit more of him and each time I am reminded of how serious this is. I have to watch my own anger too. A couple of sessions ago I realized that in the pre-chemo days I get stirred up and angry. I’m mad at chemo and mad at cancer but it’s so easy to forget that cancer is the problem and instead think that John is being unkind or inattentive or to start to make a case that he is not committed to this relationship. My fears stir and I flail inside. My head starts to tell me that he doesn’t love me, that he will leave me. My heart knows that cancer and chemo are taking him away.