I Can See Clearly Now

“Our deepest wounds are the lens through which we see the world.”—from my journal May 1994

I sing along with the radio: “I can see clearly now, the pain is gone. I can see all obstacles in my way. All of the dark clouds have passed me by. I can see bright, bright sunshiny day.”

That is a song that brings tears to my eyes. It’s a song about recovery and healing. And it’s

been a long journey through so many kinds of healing for me. And so I am aware of how my own worries and wounds distort how I see John’s cancer and how I worry in this relationship.

Many people are afraid of cancer and many caregivers have the ongoing fear that their loved one will get sick, sicker, or die. This is not about turning a molehill into a mountain. This is not about turning a stomachache into cancer. But it is about cancer being really scary and threatening. 

But still, but even with that, how much do I lose my --and our --good life to my worries. At what point does reasonable fear become a greased slide into a truly old belief that I will be abandoned? How much do I assume that the worst things will happen because I am not enough?  How often do I set myself aside and wait for pain and grief to descend --and when they don’t I go and shake the fear tree to bring some fears so that I can have the familiar terror? Even on a good day that takes some sorting out.

This is about woundedness and beliefs. I am a woman of faith and I believe in a Higher Power but these other beliefs are something else. It’s a kind of dark belief in a lower power, and maybe this is a kind of blasphemy—but some days I wonder if I have created Gods of Woundedness that I worship and solicit even more than my God of love. Oh lord, I am so ready to relinquish that deity now. I’m ready to see clearly now and keep singing along.

What About Anxiety?

“Is pathological anxiety a medical illness, as Hippocrates and Aristotle and many modern psychopharmacologists would have it? Or is it a philosophical problem, as Plato and Spinoza and the cognitive-behavioral therapists would have it? Is it a psychological problem, a product of childhood trauma and sexual inhibition, as Freud and his acolytes once had it? Or is it a spiritual condition, as Soren Kierkegaard and his existentialist descendants claimed? Or, finally, is it—as W.H. Auden and David Riesman and Erich Fromm and Albert Camus and scores of modern commentators have declared—a cultural condition, a function of the times we live in and the structure of our society?”

Those words are from the new book, “My Age of Anxiety” by Scott Stossel, editor of The Atlantic magazine. Stossel’s highly reviewed book is both a memoir of his own crippling anxiety and a history of anxiety itself. This book is beautifully written and powerful in its blending of science, psychology, history and personal memoir.

Caregivers and cancer patients know anxiety. It begins on day one—diagnosis (or even before, when the first symptoms appear) and never ends. Doctor’s offices and infusion centers and emergency rooms and even support groups all have a surround of anxiety. Sometimes that hardest thing for a couple in CancerLand is managing their mutual anxiety. Honest sharing about fear is hard but so is the strategy of keeping one’s own fears and phobia’s to oneself.

Stossel’s book, detailing his own brutal experience with multiple phobias and overwhelming attempts to treat and manage his anxiety, is actually a help to us in CancerLand. No, not just because after reading his book we can say, “Dear God even cancer isn’t that bad”, but because –and this is the power of Stossel’s writing and truth-telling—in reading his book we absolutely know that our struggles and illnesses, of whatever kind, make us human and we are bound to each other by this kind of human suffering.

Whose Cancer is It?

Here is one of the toughest things about cancer and caregiving—whose cancer is it? And who bears the consequences? Yes, I know it’s really his. It’s his body after all. But, here’s an example: He’s in pain. I hand him the phone. He won’t call the doc. I find a specialist. He won’t ask. I say, “Try this.” He says, “Later”. He doesn’t sleep. So neither do I.

Yes, he is the person with cancer but do I get a vote?

I don't want to be part of the cancer conspiracy. I wait too long to say, “That pain could be related to your cancer.” But when are decisions around his cancer only his? When are they mine --or ours? His denial impacts  my sleep, work, activities, and life. So whose cancer is it?

Talk about a valiant battle with cancer.

 Grrrrrrrr.

(Yes, I am afraid.)

My Turn to Worry?

Even as I write this I think, “Do you really need this to be about you?” But I flunked my blood tests. Again. Twice in one year. Well, not flunked exactly, but a C-minus. Not enough white blood cells. It’s called neutropenia. I Googled like crazy and sad to say, it’s a kind of boring disease. They use the word idiopathic a lot which basically means “Who the fuck knows”.

It’s not like leukemia—I went there first. I mean I came of age with Ali McGraw and “Love Story”, so every girl in her fifties remembers the dream to die so beautifully and with the perfect camel coat. No, leukemia is too many white blood cells. I have too few. It’s like low self-esteem of the blood cells. Figures.

Last year when my tests came back like this I was sentenced to six weeks of blood tests at the hematology center and the doc said, “Yep, you have low white blood cells.” So I’m not overly impressed.

But way, way in the back of my head is a little voice that whispers, “This is how it starts.”

Don't Worry Die Sooner

In my class on pastoral care for people who are dying I’ve been reading about “The Myths of a Long Life” and here was a surprise:

Worriers live longer.

Here’s why: Worriers tend to be conscientious, prudent and detail oriented. That means they wear their seat belts, drink less, don’t drink and drive, don’t misuse their prescription medicines, they don’t speed, they get physicals and routine health screenings, wear helmets when biking and they follow their doctor’s orders.

Optimism has a downside. “No worries” people are more likely to overlook symptoms and to not follow the doctor’s orders.

So do worry; be healthy.

When He Dies

This morning I was out walking very early. At that hour my mind drifts all over the place and I was imagining John’s funeral. It was prompted, I think, by the music on my IPod, a thought about the music choices I’d make and what the actual event might be like.

Then the fear hit me; I knew how sad I’d be and how scared I’d be and how hard it would be to walk out of the church when John has died. But then my drifting mind reassured me. “Oh,” I thought, “But John will hold my arm, he’ll walk out of the church with me; I’ll lean on him”. And then the terrible reality hit me: When I am at John’s funeral he won’t be able to help me.

On that day I most fear—the day I’ll need him most—he won’t and can’t be next to me.

Spiral Worries

Ugh..the worries spiral. Work, relationships, work, relationships. When I’m sad I don’t want to work, when I don’t feel like I’m working well, I worry about losing my job, when I think I could lose my job I worry about what will happen to the relationship if I lost my job. The spiral goes faster until I cry or get so mad at him and me, mostly me.

I know that prayer and faith is the answer but I fight to trust God.

That feels like my task today: slow down and trust God. Even though it seems like the most counter-productive thing to do.

I don’t know where else to put this but in God’s hands. And when it gets—I get—like this it’s the most impossible thing to do.

A Promotion

Feels like a promotion. Maybe a graduation—like going from kindergarten to first grade?

John’s “passed” his oncology tests yesterday and is now promoted to six month intervals. Which, yes good for him, but this is also means that I can now move out six whole months in my fear and worries.

Nutty thinking? Yes, I know it is, but if you’ve lived in Cancer Land you know how this crazy fear clock ticks.

His Check Up-- My Check Out

It hit me hard today. The date was on the calendar a long time. But I had made one deal with God four months ago, so did I dare another? I did. But then it was today. John’s appointment was at 4 o’clock and at 9am I was mad at him, talking to myself, talking to him—though he wasn’t in the car with me. I was mad about his work, my job, money, family, yeah even sex. Of course it took me a good 30 minutes to get it: I was mad about cancer.

Mad that every four months this big crevasse opens and I drop in. He doesn’t—or says he doesn’t. But I wonder. These are the times I wish to be male—to have that ability to compartmentalize.

But the good news is that I caught myself. I talked myself down—or up as the case may be. I remembered that I loved him with or without cancer and that maybe cancer makes it all more precious. Lesson of second marriage and of cancer: dust doesn’t matter, check books don’t matter, laundry doesn’t matter but good sex and watching movies together does.

But what I still hate is that I live so far out. I live in four month increments. I live now—the exam at 4pm was fine and most of the blood work was fine-- But we wait four business days till the results are back for the “cancer marker” that crucial blood test that tells whether cancer has returned.

Paying--Too Much--Attention

I can get a little crazy in the land of Love and Cancer. There can be such a thing, I think, as too much intimacy: When John goes to the bathroom in the early morning I listen. I try not to but I do. Oh yuck, I know, but true.

I am paying attention to the sounds. Does he take a long time? diarrhea? constipation? I listen and gauge. I’m worried about his colon. The part he’s missing and the part he still has. When we are making love and my face is inches from his scrotum and I see the small patch of brown skin I wonder. “How long has that been there? melanoma? testicular cancer? His cough in the morning; normal? allergy? lung cancer?

Saint Paul said, “I die daily”, and he meant surrender. I kill John daily, and that means the sad vigilance of cancer and caregiving.

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.

It's Always There

I leave today for a week in Orlando for a Caregivers conference. Longest we have been apart since John’s surgery. I notice that my mind calculates time this way.

Yesterday in the car on our way to a concert we were listening to the Yankees game and there was a public service announcement for Colon Cancer screening. We both listened and didn’t speak. It’s always there.

We talk about the future. We talk about “when we are old” but cancer and its nasty statistics are always there. And I calculate. I plan for a wedding and a funeral. I dream of white and black. My contingency plan is always in place. Cancer is the hum in the background. It’s always there.

Scared to My Roots

I had a hair appointment today. I love the woman who does my hair. She has the best color sense and a gift for seeing the whole person: face shape, hair type, and personality. She was the person who told me, “You have 43 cowlicks; your style will always be messy, sexy layers with lots of movement.” After learning that about my hair I now just ask for “messy sexy layers” and my hair looks and feels like me. And it moves a lot. Just like me.

She is also a great people person. We talk about relationships, men, sex, aging, work, and we talk about his cancer and how that changed my life. Therapy and great hair for just one, well, pretty big price.

Today when I sat down she said, “I’ve been worried about you.” She told me about another client that she’d mentioned before. This other client, a man, also had colon cancer about a year before John. She has used his story as a way to console and encourage me. The other guy did well and was always doing well. He just remarried a few months ago.

But now, bad news for this man I never met and whose name I don’t know. Cancer has returned and it’s wicked. Pancreatic cancer at full blast and “He has”, she tells me, standing very still behind my chair, looking at me in the mirror, “he has a year to live.”

I sit for 30 minutes while that information and the new warm-toned, golden hair color penetrates to my roots. Cancer back. New marriage. A year to live. Am I looking in my own mirror?

Lying Awake

Too many “What if’s?” I lie awake and they flood me: What if the next blood test is bad? What if the mark on his leg is more cancer? What if I have to face this again? For him? For me? What if I lose my job? Will my friends make it through another round with me? It was hard on everyone last time; everyone worked so hard to help me and us. Under all of this is the big one: What if we don’t have time? What if we don’t get to live out the love and hope and fun we have looked forward to? What if he dies while his kids are so angry? Will there be enough time for them to reconcile and not out of guilt? What will happen to them if they are forced to choose guilt or fear? Is there enough therapy in the world?

I keep trying to find a solution to the unsolvable. I keep wanting to make the equation come out right. But I don’t know how to solve for X and I don’t know the formula for his happiness, my peace, his kids to be well. The shortcut terrible solution I offer him is go back, go back.

They will never know how many times I sent him home and he wouldn’t go back.

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Cancer Worry

There are an unlimited number of triggers for this fear. It’s August and that means John’s next blood work is 30 days away; it’s summer and I feel the false optimism of the season; we talk of planning a wedding and my mind immediately calculates the rate of colon cancer when it appears a second time –four to six months. We’d never make it to a wedding. I look at calendars and wonder. I look at plans at work and underneath all of it there is a low whisper, “Could you handle that if he has surgery and chemo again?” I think of changing jobs and I think, “Manage a new job and daily caregiving?”

It’s always there. Even though on the surface and perhaps in reality there is no cancer now, today, it’s there underneath everything I do and think and plan. What if…When…
People who have had cancer know this thinking, and caregivers live with it too.

Again, Again

Last night in class my heart began to pound. May 5. John’s colonoscopy is in eight days. What if? If the news is bad what will we do? Surgery again? Chemo again? Hospital rooms again and again?

Last year it was all new. We didn’t know what was coming so even though it was hard we just kept moving expecting each next step to make things better. I didn’t know what was coming. I knew about hospital rooms and ICU and sleeping in chairs from taking care of my family all those years when they were dying. But cancer was new and chemo was new, and we kept at it. I didn’t know how hard it could get.

But now I do. Hospital again? Chemo again? And the scariest thought: If his cancer has come back it means more than surgery and treatment. It means we won’t get the time together we dreamed of. It means he will die.

I tell myself that even if that is the outcome, even if that is his and our fate, that I will be OK. I have supports and resources and people that I did not have years ago. But today I do not want resources and supports and people. I want him in my life. I want more time to love him.

Colonoscopy

Yesterday it hit me. The nervousness I feel is because April is almost at an end and May is almost here. May has seemed far off until now. And May scares me because we both have colonoscopies in May. First John’s and then mine. I’m scared of them both. I run through scenarios: If his is bad do I go ahead with mine? If his is OK and I go for mine what if I’m not OK? If his is OK do I skip mine to give us a year of no trauma? If his is bad and then mine is bad too do we end up in hospice together? So much for one day at a time.

Intuition

How do I tell the difference between intuition and fear? A lot of fears have arisen in me around John and his life. Is it my old fear? Projection? Hearing so much about people with cancer yesterday? Knowing that he is capable of telling lies? My own thought pattern of doubt? This is a crummy place to be and I want it to be different. The truth is that I want me to be different. I want peace for myself and peace in my own heart more than I want to be with him.

Surgeon Today

Another doctor’s appointment. We’ve had this lovely break from doctors but it’s time to see the surgeon again. I debate whether to go. It’s a check up, but I want to be there. Is it control? To hear what she says that he might not tell me? Because I want her to know that I am his? That he is mine? Maybe because I have been to every other one and I don’t one to break the chain? For six months of chemo I took the plastic wrapper off the newspaper each day and tied them together slowly making a long plastic chain that represented every day of chemotherapy. These doctor appointments are links in a chain too. But what does it keep in? Or out?