Suit Up and Show Up

One of the things that is hard right now is work, or rather my attitude about work. I don’t feel very motivated. I know that I have “a lot on my plate” as everyone tells me. But I struggle to have this fraud or imposter syndrome now have real fuel. I am supposed to be the ambassador and champion for my organization but I don’t feel it and have to make myself really be present every day.

I have talked to my therapist and to friends—all the “You have a lot on your plate”. But still, what to do?

I borrow this from Alcoholics Anonymous: “Suit Up and Show Up.”

So each day I dress for work. Dress as if I care; dress as if I really mean it; dress as if I have the motivation, passion and commitment. Dressing the part does seem to help. But under that? I still worry.

What will happen if my energy and interest in work does not come back?

It doesn’t help that John loves his work and goes out of his way to go to work even though he has cancer and chemo and doesn’t feel well.

Yesterday his doctor offered him a doctor’s note. Kind of a hall pass for grown-ups or a Get out of jail free card. I laughed and asked if I could have one. I wasn’t kidding.

Addiction to Fear

Last night I lay awake from 2am until 6am. In the first hour I was running an inventory of all the bad things that could go wrong in my relationship: he will do this or that; he will say this or that; he could get sick, die, leave me, love someone else. With each one I complete the thought with my possible response: I will say this or that; I will do this or that and always, always: I will feel terrible.

Now what is interesting is that I don’t need any of those things to happen to actually feel terrible. No, efficient gal that I am, I have already made myself feel terrible just by running through the scenarios and previewing or rehearsing the outcomes. The effect: I feel like shit.

It’s not new behavior. I have done this most of my life. I suspect I started this as a kid but then it was just background music. The sound track to a scared kid’s life. It was, I suppose, to be a kind of inoculation. If I can imagine it then I can be prepared for it maybe? But it took on a life of its own. Now it’s a habit.

It is an addiction too I realize because it actually produces a physical effect. I release adrenaline and cortisol into my body. Hence awake in the wee hours. That also is not new. I have been able to make myself crazy with rage or grief or terror with scenarios that never occurred. I produce the emotion and the physical effect.

You can imagine how good this is for the relationship.

But last night awake in bed and then in the living room I was able to see this from a slight angle. Maybe I was just tired enough to watch myself do this and I asked myself: If I spend 90% of my thinking time creating scenarios to scare myself what would I instead think or feel if I could reduce that by say 60%? I’m not sure I can stop this addiction to fear or this habit of shooting up my own adrenaline using only my mind but if I could interrupt it and reduce it what would that produce?

Two Trains Running

There are always and only two trains runnning. There is life and there is death. Each of us rides them both. To live life with dignity, to celebrate and accept responsibility for your presence in the world is all that can be asked of anyone.

--August Wilson,
preface to TWO TRAINS RUNNING

High Heels

I am craving high heels. Specifically red high heels. I tried on a pair at Ann Taylor and wanted to walk out of the store in them. The thing I liked was that tiny bit of red peeping out of the front of my jeans and the way that stiletto heel looked in profile against the boot cut of denim. They were the wrong size but I almost bought them anyway. Then I tried another pair at J.C. Penny. That pair had a small platform and they were $25.00--more reasonable for shoes that are pure whim. Oh yeah, both pairs were red patent leather. Red patent leather high heels. I mean, could anything be more slutty? Oh and yes, both pairs were peep toe. They could easily be in the Victoria’s Secret catalog or in the Frederick’s catalog for that matter. I didn’t buy them but I came close.

So what gives? It’s chemo weekend and I am craving red high heels. Is there a connection? Maybe I have had too much therapy or read too much New Age philosophy and I think always that everything means something else.

It’s about desire for sure. But desire for what? The obvious: sex. Red patent leather peep-toe high heels are about sex, and sex is about life and energy and vitality. Maybe these spiked heels are a way to stake a claim for my energy and vitality. I’m not dying; I want to flash a neon sign that says: see me, feel me, hear me coming.

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.

One Hour at a Time

Today is the start of chemo number eight. Part one is time at the oncology center and then 46 hours of wearing the infusion pump through which John receives the dreaded 5-FU. This morning I started saying to myself “One hour at a time”. That has to be today’s mantra. I have a work meeting at 8am, then race to the office, then drive to meet John at chemo, I can prep for my evening class while he receives chemo, then home to meet the visiting nurse to get the infusion pump started. Once he is settled I am off to give a workshop—for caregivers no less and after that I head to school to get at least an hour of my night class. If I just look at the next hour: dress for work and drive to the breakfast meeting I can do this.

I Don't Want to Miss Anything

I don’t want to miss anything. That is the opposite pole to I can’t do everything. Yes caregiving is hard; yes loving a man with cancer is stressful. Yes I am scared. But I don’t want to miss this. We didn’t choose cancer. We never imagined that in our first year together we’d be facing cancer and chemo and scary doctor’s appointments. A year ago e had planned a very different life together.

But cancer it is and chemo too. It literally is a relationship on steroids.

I say to myself yes it’s hard and I am scared. I could lose him but I don’t want to miss this. This incredible man is with me and in front of me and he has cancer and I don’t want to miss one second of it. That’s what also makes asking for help difficult. I want to do everything. I don’t want to miss making a meal or going to chemo or even seeing his pain.

I’m not quite at saying I’m grateful but I know enough to know that there are gifts here and they may be hidden in the grocery store, the doctor’s office or in a painful conversation sitting on the couch—and I don’t want to miss that. I don’t want to miss anything.

I Can't Do Everything

I can’t do everything. This is my mantra right now. I keep saying it in my head, “I can’t do everything, I can’t do everything…” I’m trying to convince myself that this is true and that it is OK.

But it’s also true that I have done almost everything and I do a lot. I have always managed to do so much: a job, home, writing career, community work, recovery, a busy social and cultural life and some amount of self-care. I get things done. I do more than the average bear.

But now I can’t.

It snuck up on me. One errand too many. Having to take care of the car by myself, or do the grocery shopping all the time now. The dry cleaning. The small things he cannot do because of fatigue or neuropathy or pain. Something has to give and it’s not as easy as it might seem to discern what that is.

Will my job matter five years from now? Probably not but we do have to pay the bills and if he gets disabled because of chemo then my income is all we will have. Writing? Do I give that up? What happens to my soul if I walk away from that? Besides writing is how I cope and how I know what is happening inside and around me. Hence, this blog. Community work? Yeah, most of that can go for now. The errands, yes reluctantly I can let people help with those things.

I am working my way to this. I am trying to get it. I can’t do everything.

Nothing Equals Cancer

This is one of the hardest things about being a caregiver in CancerLand: Nothing equals cancer. I may have aches and pains, trouble at work, struggling with the loss of a friendship or just feel really bad. But nothing equals cancer. Others suggest or hint at this but I do this most to myself. I make this comparison. Am I going to complain that my hip STILL hurts; am I going to fuss about my job and have the “What will I do when I grow up?” conversation again; will I talk about my worries and how being a caregiver in CancerLand feels really hard?

But the voice in my head says, “Hey, you don’t have cancer. You’re not doing chemo. You don’t have to fear death”.

I know that not having cancer and being around someone who does is supposed to give me all kinds of positive and perky perspective. That old saw about the guy with no shoes meeting the guy with no feet. But you know what? That never made sense to me. I mean, the guy with no feet doesn’t need shoes so he’s not gonna understand a shoeless guys pain. Besides they are both in pain. And you never know: the guy with no shoes may be the one who hurts the most. It often turns out that way.

So no I don’t have cancer but I still have hard and scary things in my life. But it’s hard to take myself seriously and it’s even harder to ask others to take my pain seriously because:
Nothing equals cancer.

Let Them Help

Another conversation.

A friend wants to organize folks to prepare and deliver meals.

“Just one a week” she says. I’m stalling. I tell her, “He’s going to work, he’s OK.”
“This isn’t for him”, she says, “This is for you. You need the help.”
I am reluctant.

I keep thinking we’ll need food later, need more help later. I live as if there is a finite amount of help and I don’t want to use it up now while things are relatively manageable.
I think they are but “relatively” is key.
I am stressed and I know it. There is no downtime. I get angry in the car. I feel like every second of my life is scheduled and accounted for. I have a list on my desk and a list in my purse and a list on the passenger seat of my car. I can’t breathe.

John is tired. Yes, he is back to work but that’s all he can do.
I have my job, my writing and then all the errands.
Having some one else prepare a meal once a week would be great. It would cover two meals and cut down on shopping and cooking. John can’t help with those things because of the sensitivity to cold and the neuropathy. He can’t shop or cook.
But I am stalling.

Asking for help means something.
It means I cannot do this alone.
I want to be the one who takes care of him
And I can’t.
That feels really bad.

Facing The Feelings in Cancer and Caregiving

Friends have been shocked by my admission that I have had feelings of jealousy around John’s cancer. Others—who are caregivers --have said, “Yes, I felt that too” but they are sheepish or ashamed that they had what seems a terrible thought.

I have a fierce feeling about this: I don’t want to deny any of the thoughts or feelings that I am having as I go through this experience. I don’t want to miss this experience. I am living this and that is bad enough. I don’t want to add denial and pretense to the mix.

I learned a long time ago that there are no feelings that someone else has not had and few things that we have thought or done that someone else has not thought or done. I know that when someone—hearing of a shocking incident or a stunning admission says, “Can you imagine?” that the correct answer is always “Yes”. We are most often horrified by the things that we can imagine rather than the ones we cannot.

It is also why I am writing this blog. I want to record in one place what this was really like. I want one person to know how good and how bad loving someone with cancer can be. I want to challenge myself each day to skip the platitudes and the saccharine and face head on what this relationship with love and cancer is really like.

I Want Cancer Too

My doctor leaves me a message. She has the results from my recent blood work. I’m nervous. A call from a doctor has a new layer now—even for routine things like a physical or test results. Will she tell me that my Cholesterol is lower or will she say, “There is a problem.” I think of Jane Kenyon dying before her husband who had colon cancer. My imagination takes off. I imagine bad news and what would I do? I think, I could not do chemo. I could no do what John is doing.

But there is another layer to my imaginings. Maybe I could have cancer too and then we could share this. Some part of this is about wanting to be important and special—like a four-year-old who wants a broken arm or crutches like the other kid. But under that is this: I want cancer too so I don’t have to be left alone.

His Wife

His wife is part of our relationship and she is in my mind every day. The thing I fear most is losing him. I could lose him to cancer or I could lose him because he will leave. When I think about this and when I feel this fear and anguish I am aware that his wife is feeling that now. He left her. She has this loss and this anguish. Every month it’s new again: her birthday, their wedding anniversary, the private anniversaries of a long relationship, things only they know and remember, where they were a year ago, the trip they took, the dinner party, the day they went to the play with their kids. Each one a new wound.

I sit with the fact that I am part of her pain. Did I cause it? Could I have prevented it? Did he leave because of me? Did I make him? If I wasn’t there would they have been happy and married 40 years? How do I apportion my part? I can’t absolve myself but is it also grandiose to say I caused her pain? Is it shirking to say he did or even she did? They did I suppose. It was their marriage just as mine was mine.

But I sit here on a cool fall morning and I think, “One day he will not come back.” The day is coming when I will be remembering our days and the pain will be so great.

Across town his wife is living that pain now and I am part of that.

She and I want the same thing: to love and be loved and to not be left. We both fear the man that we love leaving us. Hers now. Mine later.

Donald Hall and Jane Kenyon II

I just finished reading “Unpacking the Boxes”, new memoir of Donald Hall. This is 14 years after Jane’s death and he recounts much of the story that he wrote in “The Best Day/The Worst Day”…but now he is farther from it and tells more.

What struck me was how much he missed being her caregiver. The details of daily caring for her in leukemia were so hard but I understood when he wrote that he was with her and caring for her day and night. It meant connection and they were together even though the circumstances were shitty. After she died he missed her and he missed being able to care for her. I realize some days that there is a benefit in this cancer. It’s a connection and a way of being in relationship. No one would wish for this but I am aware that it is a gift of sorts. It sets a strong priority and it makes a bond.

The other thing that Donald Hall—quite bravely—writes about in the new book is his sexual fantasies and his sexual behavior while Jane is dying and after her death. He writes about the voracious fantasies that would flow thru him and how, after her death, he acted on them and wanted lots of uncommitted sex.

It’s a bit scary to read that but startlingly honest I thought. I never believe he didn’t or doesn’t love Jane but that he is carried by body and mind to a very sexual place.

Andre Dubus on Body and Spirit

Andre Dubus (1936-1999)

Here’s a Salon review of his final essay collection:

“Much of Meditations From a Movable Chair, including its title, is haunted by the accident in 1986 when Dubus, then 49, was struck by a car [while stopping to help a stranded motorist], costing him one leg and severely damaging the other. He is too honest and brave a writer to pretend that the accident did not change him in fundamental ways (just as his marriages and divorces and the births of his six children have also changed him) or that he did not suffer from self-pity and despair as well as excruciating physical pain while recovering from it. He consistently describes himself as ‘crippled,’ and despises the journalistic clichés that are invariably hauled out to discuss the disabled: ‘To view human suffering as an abstraction, as a statement about how plucky we all are,’ he writes in ‘Song of Pity,’ ‘is to blow air through brass while the boys and girls march in parade off to war. Seeing the flesh as only a challenge to the spirit is as false as seeing the spirit as only a challenge to the flesh.’”

How Are You?

Last night we went to the wedding. We appear as a couple in public. We meet people we knew and people new to us. I talk to Bob seated on my right and meet his wife, Christine. He is 80 and she is 60. In making small talk about families and grown children he says, “Well, my children don’t come around much. Christine and I met while I was still married. I fell in love with her and left my wife. I wanted to be happy.” It was more than 20 years ago. We talk about their life and businesses and travels. They are quite happy. I tell him that John and I are in a similar situation. He asks, “Do people try to make you feel bad?” I say, “yes, sometimes.” and Bob says, “Well, fuck them.”

During the evening John and I talk with other guests.
When people say to John, “How are you?” There is a moment of calculation.
Do they know about the cancer or not?
Are they saying, “How are you—given that you have cancer?”
Or
Is it simply, “How are you?” and now he has to tell them about the cancer.

The Costs of Caregiving

The average caregiver is 46, female, married with children and working outside the home. Although men also provide assistance, female caregivers spend as much as 50% more time providing care than male caregivers.

A four-year study by the National Alliance for Caregiving found that middle-aged women caring for an ill or disabled spouse were six times more likely to suffer depressive or anxious symptoms than those with no caregiving responsibilities. Their symptoms include:

A higher level of hostility
Less personal mastery
Less self-acceptance
A decline in happiness

Compounding this picture, more than one-third of female caregivers provide care to others while suffering from poor health themselves. Women over the age of 50 who are caregivers have a twofold increase in their risk of coronary heart disease. (CHD)

And then at work:

33% of working women caregivers decreased their work hours
29% passed up a promotion, training or assignment
22% took a leave of absence
20% switched to part-time
16% quit their jobs


When I read this today I knew I was reading about myself.

FU

It’s chemo weekend. The infusion pump returns and the nasty drug called 5-FU. Yesterday to the oncology center for several hours then home to the visiting chemo nurse who hooks John up to the pump. These two days the chemo pet we call FU lives on John and dominates our lives. It is tiring. Tiring for him, yes and tiring for me. I am running. To work, then to the oncology center, then home, back to work, then to my night class. Groceries? Dry cleaner? Postage?

Today I feel resentful and then guilty for feeling resentful. I want to take a breath. I want to shop for shoes. I miss my life and I am afraid of losing myself. I want to be able to rest or be spontaneous; I want to call a friend. All I am aware of is what is not done: laundry, groceries. He cannot go to the grocery store or open the fridge because of the reaction to cold. I don’t want to eat and I don’t want to cook but he needs to eat.

What is hard is to sort out what is really him and what is really me versus what is cancer and chemo. Maybe he’d be this selfish anyway? Maybe I’d be this pissed anyway? It’s so hard to step back and see the good. I’m trying to remember who he was before cancer. Was he a nicer person then? Was I?

All I can think of today is FU.

Before Strongly Desiring Anything

“Before strongly desiring anything,
we should look carefully into the happiness of its present owner.”


Francois duc de la Rochefoucauld (1613-1680)

I found that quote on a calendar years ago and I saved it.
Today it hits me more strongly than ever. For me this can apply to desire for:

A house
A car
A dog
A job
A man

Especially a man.

Making Love to Save Your Life

Every time we make love I am grateful—and amazed. It gets better and better and no one in Cancerland told me this was possible. On one hand as we are learn more about each other intimacy grows, fantasies and desires deepen and are safer to explore. And yes there is more humor; we laugh in bed which also means that we can bring lots of other feelings there too: anger, fear, lust and simple curiosity.

But still, who would have guessed that there could be so much sex in the face of cancer and chemo? Well, not until you realize that cancer is a sexual challenge. It’s a sexual challenge not just in the “Your love life may change” language of cancer pamphlets, but cancer is a challenge to the psyche and to libido in a powerful way.

Cancer says, “I’ll take your life.” and being sexual says, “No FUCKING way.”

One fights for one’s life with cancer. We knew that—all the dead metaphors: battle, fight, struggle etc. But one also fights WITH one’s life—literally with one’s libido—the life force, creativity, sex. Libido and life will out.

It’s really too bad that the cancer lit doesn’t talk about this—doesn’t give this option a voice. They could at least tell patients and families: “Yes, your sex life might change. You may have to make adjustments, you may have to cuddle more OR you might just have the best sex of your life.”

Beautful Swimmers

Beautiful Swimmers by William Warner is one of my favorite books. It’s is the story of the watermen on the Eastern Shore of Maryland and their counterpart, the blue crab.
It’s all here: how the crab lives, feeds, courts, mates, dies and is eaten. And how the waterman trains, dresses, plans, thinks, prays, eats, and yes, dies. These two --the crabs and the watermen-- are wonderfully and positively co-dependent.

Two of my favorite words in the English language come from Beautiful Swimmers: Autotomy is the remarkable crustacean attribute of dropping a limb, allowing a pincher or leg to fall away as a means of exiting a battle or a threatening situation. Autogeny is the related and accompanying attribute referring to a crab’s ability to grow a new limb to replace the one sacrificed for survival. I could not, the first time I read this, or now, years later, miss the comparison to humans. Wouldn’t it be wonderful to know when to drop something or someone and just walk away, and yes, to also be able to naturally grow that part of oneself again, to make a choice and to be new again?

Going to a Wedding

Next weekend we are going to a wedding. My friend’s son is getting married and we have been invited. It feels special. The invitation came to us as a couple. That is special. We’ll be attending this grown up and very social affair together. That is special. It turns out that we’ll each know some of the other guests; our worlds intersect at this wedding. That is special.

We talk about someday getting married. I imagine a ceremony on the beach. I have seen a dress that would be splendid for a beach wedding. A peachy ivory lace sheath, knee length that just skims the body. When I saw it in the store I thought, “I could get married in that.” More than once I have thought, “Just buy the dress. Buy the dress so you have it, so you can look at it in the closet and know the day will come.”

But I have also thought, “If he dies that dress will kill me and it will be excruciating to have a wedding dress that was never worn.”

Live in today? Hope for the future? Believe him when he says, “We’ll be married for 20 years.”? Or just be grateful that this week we are a normal couple buying a wedding gift and looking forward to going to a wedding?

Our Relationship with Cancer

It is a double whammy. Negotiating cancer and the relationship. Today we had an OR talk. OR is “Our Relationship” a standard feature of the new relationship: who are we, how are we, where do we go from here, your friends, my friends and why I spend more on shoes and organic food and why you wait for sales and never buy expensive produce.

But now you toss in cancer and chemo. Is he really this selfish or just feeling sick? Am I codependent or a good caregiver? Is he unwilling to make an effort or just tired from the chemo? Is this my habit of pulling away or am I reasonably cautious about what I and we are facing?

I long for familiarity and fear it at the same time. Cancer changes the trajectory and the timing. I want to relax. Ready for that time of no fussing of being able to go “as me”. Can I skip shaving my legs? Can he floss in front of me? Wearing the old tee shirt for pj’s? For any couple there is loss and gain in reaching that familiar place. Less sex, a different romance but more and deeper love. How much is making an effort and how much is taking it all for granted and the pleasure and security in knowing you can. But cancer changes that too. The future is not just ours but belongs to cancer too. We can say what we’d like to do someday but cancer is keeping the master calendar.

Lying Awake

At 4am I am awake. I look across my pillow and watch him sleeping. He looks like a boy. His short hair slicked back, his strong cheek bones and long nose make a sharp profile. He is handsome and he is asleep. I know that he is in pain but he will not say it. His mouth hurts but he says, “It’s annoying.” He is tired but he jokes and says, “Loving you keeps me awake too much.” It’s true we love each others bodies. But at this hour I am sad and I am scared. In two hours I will make coffee and he will shave, I will go walk and he will read the sports section, I will check my to-do list several times and he will check his email and phone. His sons do not call. They are still angry that he left their mother. She is angry too. All of that weighs on him. But for now—for this moment --he is asleep. I hope, for this moment, that cancer is too.

Anxiety

Big anxiety today. All thru my body and in every pore. The most awful feeling. A new year begins the day after Labor Day. This is my favorite time of the year but colored this year by loss and fear of loss, worry about John and worry about me. Will he be OK? Can I do this? What happens when he gets more ill? When the side effects are harder? If he can’t work? Can I support us? Can I support him? Who will support me? All of those questions and more. I try so hard to stay in this day. I write this in my journal:

Be in this day.
Look down at your feet.
Be where your feet are.
(Codependence is looking down at someone else’s feet.)

I keep saying to myself: Be in this day. John is well today. He went to work today. I am OK today.

So much is good but I see movement behind the curtain, just off stage. Something is back there. Something is just out of sight that scares me.

Cancer.

Let Evening Come

Let Evening Come
by Jane Kenyon

Let the light of late afternoon
shine through chinks in the barn, moving
up the bales as the sun moves down.

Let the cricket take up chafing
as a woman takes up her needles
and her yarn. Let evening come.

Let dew collect on the hoe abandoned
in long grass. Let the stars appear
and the moon disclose her silver horn.

Let the fox go back to its sandy den.
Let the wind die down. Let the shed
go black inside. Let evening come.

To the bottle in the ditch, to the scoop
in the oats, to air in the lung
let evening come.

Let it come, as it will, and don’t
be afraid. God does not leave us
comfortless, so let evening come.

The Amy Winehouse House Board of Directors

At my fantasized cancer support organization, The Amy Winehouse House (see entry on this blog for July 20, 2008) I have designated a board of directors. Most nonprofits have on their boards some business people and medical folks and what are euphemistically known as “community volunteers” (translation: I don’t work but I have money). At The Amy Winehouse House we too have those we turn to for guidance and advice. These are the folks who help us stay true to the mission which is: Fuck Cancer.

So in the spirit of full disclosure here are the members of The Amy Winehouse House Board of Directors:

Amy Winehouse (duh)
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 refreshments for the Board meetings can be tricky. And, yes, we do know that some of these folks are dead. You may be asking why that’s important. Well, it’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.