Damn the Uncertainty

If only....Sign at a local church

One thing is certain about aging. It will be filled with uncertainty. I remember a friend who was considering early retirement and, therefore a reduced pension, say, "If only I knew how long I'm going to live, then I'd know how much money I'd need." Of course, she couldn't know and, playing it safe, she decided to stay long enough at her job to garner a full pension. Uncertainty hangs over everyone. Like the saying goes:"you could die in a car crash tomorrow." But it is the awareness of uncertainty, the sense of the fragility of our lives and our choices, that grows stronger as we age.

Throw an illness, like cancer or heart disease, into the mix and the
uncertainly can become paralyzing for those afflicted and those around them. I'm in the midst now of trying to not let uncertainty control my feelings, my outlook and my plans. To not let worry ruin the good in my life. And I am really struggling with that.

Peter has finished his cancer treatments: his radiation, his chemotherapy and his surgery.* Now, he is recovering and getting back to his writing projects, starting to think ahead, talking about a road trip soon and a longer trip in the fall. I'm still not able to join in wholeheartedly.

This week we met the oncology team and they seemed quite certain that Peter is doing well now that the tumour is gone from his esophagus and the nearby lymph nodes. But the surgeon is still concerned so we have to wait for a future CT scan for more news.

Some people - and maybe I'm one - are more anxious about uncertainty. Perhaps I'm what Julie K. Noren, the author of The Positive Power of Negative Thinking, calls a defensive pessimist, someone who uses worry and low expectations to prepare for the worst and think out strategies. Noren says the "half-empty" people aren't worse off than the "half-full people" if they use their pessimism as a tool. That's worked for me time and time again with short-term anxiety about traveling to a dangerous place or taking on new work and life challenges. In those cases, it meant planning for all possible outcomes and not allowing my fear to become panic. In creative processes, I knew I didn't care enough about a project if I wasn't constantly uncertain about its outcome. The accompanying anxiety forced those back-of-the-mind solutions to pop into my brain.

But cancer seems different and this uncertainty is going to be long term. Even patients declared cured of cancer walk through life wondering if the cancer will return. So do their loved ones. "Cancer is a tricky disease," the oncologist admitted. "If we see it again, it's usually in the first two years."

I looked online for some guidance on living with this kind of uncertainty and found the expected "list," advice of The American Cancer Society for patients, advice from a psychologist in Oprah Magazine and lots of guidance on living in the moments from Buddhist sites. There wasn't anything particularly new to me. I did already know I should be trying stress reduction techniques, mindfulness, focusing on what I can control. But that's the rub. We can do what we can to safeguard Peter's health and the life we've built for ourselves but there are no set strategies to stave off cancer's return, no map I can draw to gain control of my own anxiety. I admire people who can truly live in the moment with spectres of disease or financial disasters looming over them. I'm just not sure how to become like them.

What did get me thinking about how to rise above the anxiety was a reference to Eleanor Roosevelt and her views on fear in one article. "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face...You  must do the thing you think you cannot do." It reminded me that for years I kept another quote of hers nearby. "Do one thing every day that scares you." I can't say I've done something frightening every day but the idea of it has helped me to get on a motorcycle for the first time, travel into a city divided by civil war, drop a job that wasn't working for me. But for me, trying something scary always came with a backup plan.

Now it's this anxiety over cancer that scares me more than anything. But I'll be damned if it's going to rob me of the joy I feel in my garden, the pleasure of an outing with Peter, my desire to learn new skills. I don't have a clear road map yet. I'll keep reading about it and keep Eleanor's quote in mind each morning, trying to fill each day with more life than fear.

The other day over lunch at our sunny table, Peter and I pulled out old maps and planned a short road trip. He grew excited about a museum we could see, a bar that specialized in grappa. I grew excited about traveling again, of seeing new scenery and making new memories that didn't involve hospitals, nursing clinics, cancer centres and fear. Happy at the possibility that there will be days without fear over the uncertainty. D

*Peter is blogging about his cancer treatments and his own emotions in his
 The Man Who Learned To Walk Three Times blog.

Taking Care of Myself

I like to think that throughout my adult life I've had the good common sense to take care of myself. I've tried to take care of my body by (generally) eating right, (generally) getting enough sleep and (less generally) getting enough exercise. It's an attitude I've always planned to carry into the third phase to keep up my energy and to avoid doctors as much as I can.

I've also tried to take care of my mind with new activities, new writing projects and learning new skills. And of my soul by trying to forgive and love all I can.

"Taking care of myself," however, can be a difficult attitude to maintain when life goes off the rails as it has for us this winter with Peter's diagnosis of cancer of the esophagus, his month of radiation and chemo and his recent complicated surgery.

In the many encouraging notes I've received, people reminded me to take care of myself. And I have to admit, while appreciative of their concern, it often just seemed like one more thing I had to do. And I wasn't quite sure what they were saying.

I'm sure they don't mean eating every last potato chip in the house, pouring myself an extra glass of wine, eating a second or third helping of food which I definitely didn't need because I was distressed watching Peter struggle with a forkful of dinner. I'm sure they don't mean spending hours of mindless time playing computer games. Or feeling angry and terrified.

But what were they saying? Sometimes, I imagine they meant I should have bubble baths with a glass of champagne at my side or take myself out to dinner. Although their expressions were well-intended I was just never sure what they meant.

I have wonderful friends who have taken care of me with offers of rides, lunches, gifts of soups and puddings, plants and body treatments. One amazing friend arranged an apartment for us to stay in while we had some treatments in the city. I have been grateful for it all.

That said, I wasn't heeding the advice to take care of myself because, as I said, it just took too much thought and energy. Then I remembered back to an earlier time when my life went wonky and I stopped taking care of myself. It was after my ex-husband decided to end our marriage, leaving me with feelings of inadequacy and hurt, leaving me with the need to make a life for myself and my toddler daughter.

I had the good sense then, at least, to get some counselling sessions. And I remembered - as clearly as if I was sitting in her office - when the counselor asked me if I was falling into bad habits. I admitted that, although I'd never been anything but a "social" smoker, I was now smoking regularly even though I was prone to chronic bronchitis. And I wasn't eating. She then asked me what I had done over the course of my life that I found soothing. I sat for a bit before coming up with a short list: listening to music, walking in nature, preparing a tasty meal, reading an uplifting book. "Do those things," she said. And even if my list sounded like a corny Hallmark card I did those things. And I got through it. Prospered even. Felt stronger than I ever had.  

Her words came back to me this winter. I knew how to take care of myself; I was just letting the fear and anxiety win. In the space between treatments and surgery I re-booked a weekend at a spa with my daughter that I'd had to cancel after we got Peter's diagnosis. I knew there were more anxious days ahead but I tried that weekend to live in the moment, to revel in my daughter's company and her joy. I let myself be indulged with the "detox" treatment package. I nodded absently when the reflexologist said my adrenals were working overtime and giggled with my daughter while we ate in robes and dunked in the outdoor hot tub on a relatively mild winter day.

Surgery did bring more anxiety and I both failed and succeeded at taking care of myself. I let myself panic at the extra long wait in the waiting room as the clock hand moved further and further past the point the surgery was supposed to end. But I let myself be soothed by the people waiting with me, Canadians from all backgrounds with loved ones in for all kinds of surgeries. Strangers, we shared our stories. I was the last of us to hear from a surgeon. By then only one woman sat waiting for her husband to be moved from recovery to a hospital room. A friend had come to wait with her and when she saw how distressed I was she asked my husband's name and began a long prayer in Spanish. I'm not a religious person but I let her words and kindness wash over me.
             
I ate bad hospital cafeteria food of fries and the saltiest, greasiest grilled cheese I've ever eaten. Comfort food that brought no comfort. But in the next days I brought food from home or walked to a cafe where they made good soups. And, on the day of the surgery, when I was reeling from the surgeon's mixed messages, I had the good common sense to let others know I was hurting. My sister soothed me on the phone; friends wrote comforting messages. My American doctor friend insisted on paying for a hotel so I wouldn't drive home every evening and get into an accident on a wintry highway drive. I could afford the hotel but had never thought to indulge myself that way. Her offer gave me permission to take care of myself by not trying to do it all. Her words reaffirmed the common sense I was in danger of losing track of; she said she had seen too many caregivers brought down by trauma and illness because the attention of the medical team is on the patient.

And that I believe is the message I will carry into the third phase, a phase where all of us have to balance our own health, our own needs, our own desires with our concerns for a parent, a child or a spouse. Taking care of ourselves means different things to different people. Some of us are programmed to lean too far one way or the other. Finding that balance just might be the key to survival, if not happiness.

Oh, and now that Peter is home recuperating, I had a great workout today at the gym.

Thinking Hard about the Brain

I tend not to worry excessively. I tend not to dwell on the down side of every or even any situation. The exception might well be dementia, Alzheimer's, or just any sign that my brain might be deteriorating. When I was first starting Chemo, one of the things they warned me about was Chemo Brain and that freaked me out more than anything. You can put my body through a wringer but leave my brain alone. Of course that is a self-defeating attitude but not as uncommon as you might think.

If there is anything that has us baby boomers freaking out it is the possibility of literally losing our minds. It is the stuff of novels, movies, dire health reports and frantic efforts on the part of scientists around the world. And it is the stuff of snake oil salesmen. Anytime there is a big demographic group with money and a problem or worry there are people willing to take advantage.

Luminosity is the company responsible for those never-ending ads about how neuroscience says playing games, and, by implication, giving Luminosity big bucks to play those games will make your brain stronger and put off cognitive decline. Late in January, Luminosity agreed to pay the US Federal Trade Commission a two million dollar fine for misleading advertising. It seems the neuroscience wasn't quite as clear as the company's marketers wanted us to believe.

On the one hand, this confirmed my deep suspicions. If games were what made the brain tough and resilient there's Backgammon, Chess, Go, Mah-jong all freely available in real life and on-line and all in their own way deep challenges, so why would you have to shell out money to a Corporate Game Maestro simply because he claimed to have access to neuroscience? On the other hand I am not alone in hoping, desperately hoping, that there is something I can do, some trick I can employ, some MacGyver spin I can implement that might mean I am lowering the odds that I will succumb to my greatest fear. If Luminosity doesn't make the brain more supple, what will, what does?

Not being able to do something, anything, is the other big fear of Boomers. We are a generation that came to believe we could conquer any problem thrown our way. It is part of what makes us as a group seem so arrogant, makes us as a group seem smug. Of course it has never been true that we can conquer everything but that has never stopped us from believing we can, from insisting that we can. So, is it hopeless, is there nothing that can be done to forestall or evade Alzheimer's and its cohort of mental nightmares?

Actually there is a fair amount of interesting science and reassuring initiatives out there to make me at least more calm, if not 100% reassured. Scientists are learning about genes and their role in developing cognitive damage, drugs are in the works that seem to be able to reverse some if not all the effects of Alzheimer's, and money is pouring into a myriad of different ideas and research avenues. What's not certain is that any of this will pan out or that any of this will be easily available to most of us.

The good news is that I experienced not one bit of Chemo Brain. The bad news is that I can't stop playing Mah-jong.