It's a Life

I work for a nonprofit as an advocate for people living in poverty. I write about military mental illness and trauma. I interview vets with PTSD and I write about cancer and caregivers. I also play golf, dance, swim, adore Pilates and yoga, and I love the Pittsburgh Pirates, Steelers and Penguins. And I dance, write fiction, teach writing, and when I get a chance I love to be at a podium to speak about any and all of that stuff.

Even I have to admit that's a lot.

And because I am so grateful that I get to have this life and all of that --that I also complain about --"I'm so busy and so tired and so stressed"--I try to have an active and growing spiritual life. There are days like this one when it's so clear to me that with out the ground of faith under me I would have none of this--my health, my good marriage, John's good humor and support, all the curiosity and fierce energy that I get to bring to my work.

Years ago I came so close to dying.  I saw the light and was almost gone. But I didn't and it never quite made sense. Now it does and I have work to do.

This is part of it.

Sexy Funny Smart Breast Cancer

Yes, October is Breast Cancer Awareness month so let the pinking begin! For the most part the pink insanity infuriates me. Girly? Babyish? Infantilizing?  Yes, all that. But I was tickled pink when a cancer colleague sent me a link to a great cancer org that combines sexy, funny and in-your-face advocacy for breast cancer.  The perfect combo for for Love in the Time of Cancer.

Take a look at the website at  www. Save2ndBase.com

http://save2ndbase.com/store/womens.html and note the tee shirt that has a drawing of two baseballs at oh, about breast height, with the slogan, “Save Second Base.”  Brittany who sent me the link said, “Some find this a bit “in-your-face, but we find breast cancer a lot more “in-your-face” – especially the havoc it wrecks on patients and their families.”

Save 2nd Base began as a cancer charity walk team for Kelly Rooney. Rooney, a mom of five who died of breast cancer at age 43, designed the T-shirt.

Proceeds from the sale of these items benefit the Kelly Rooney Foundation (www.kellyrooney.org). The Foundation inspires support, research on breast cancer in young women.

Check it out and get one of these great shirts. You can’t imagine the double takes you’ll get at baseball games. It’s kind of a boob IQ test.

Caregivers May Be Hidden Patients

In today’s Live Smart section of the Albany Times Union there is an article about health risks for cancer caregivers. We’ve been documenting the health risks for female caregivers for some time (MetLife has done a lot of that research) but today’s article discusses the impact of male caregiver stress for men who care for a partner with breast cancer. It’s true, as you’d expect, that there is a health decline for men when their partner is going through diagnosis and treatment but what the new research shows is that there is an ongoing health impact and serious decline for those male caregivers even after the partner’s treatment.

This longitudinal research comes from Ohio State’s Department of Psychology and Psychiatry. The studies document that the male caregivers of a partner with breast cancer experience significantly more stress, abdominal pain, digestive disorders, headache and migraine, coughing, respiratory ills and nausea. And that these, plus guilt and depression, last for years.

The study’s recommendation is to physicians and clinicians reminding them to inquire about the health of caregivers who are accompanying patients.

But really, have you ever heard a caregiver say anything other than, “I’m fine” if they are asked how their health is during a cancer crisis? Even in private or with close friends most caregivers will reply, “I’m not the one with cancer.” But we have intuited, and now we know, that for both women and men who are caregivers their serious health problems can begin while they are in caregiver mode.

This risk is compounded by the practical reality that caregivers do not want to make one more doctor visit during the intensive caregiving months—so their own health risk can be even greater as essential symptoms are ignored.

So what to do? Caregivers pay attention. Friends of caregivers, pay attention and encourage. And patients: even in the midst of your own care be mindful that your caregiver may be at risk and encourage them to get a physical and routine tests. Also give the caregiver private time with the physician so they can talk guilt-free about how they are really feeling.

Silver Tsunami on Drugs

We know about the Boomer Bump. The huge demographic shift that is overtaking our economy and healthcare system is changing our family and social dynamics in many ways.  Our rapidly aging community means more caregivers of all ages, more sandwich caregivers and greater longevity but also more disability.

And it also means more drug addiction and more misuse of drugs and alcohol.

The tsunami for older adults using and misusing substances is tricky because we have social and cultural blocks to seeing and addressing the issue. Can’t Gramma enjoy her glass of wine? Why should Grampa be in pain if his doctor is giving him prescriptions? And the doctor says it’s OK, what’s the big deal?

But it is a big deal because we are seeing huge increases in the number of people in their 50’s and 60’s as first time users of marijuana and cocaine. I know, seems crazy right? But Gramps is not down on the corner scoring the stuff from some kid, he’s buying it at the senior center and in the assisted living lobby and it comes to his door in the high-rise.

And the numbers compound when you consider that 10,000 people turn 65 everyday in the United States.

We know that alcohol and drug use increase with stress and this is the group who are facing endless caregiving. Being a family caregiver is no longer a 12 to 18 month task while someone progresses thru a serious illness. Better healthcare means that caregiving will go on and on and on and, well, who would deny someone in that situation some wine, or some Valium or some Ambien or if you are exhausted, a little cocaine?

Most folks over 60 have an average eleven medications prescribed for them by an average of three doctors. The most prescribed medications for seniors are Benzodiazepines: Valium, Zanex, Ambien etc. They are central nervous system depressants. And highly addictive. And they mimic the symptoms of dementia—so family, and even physicians, can be fooled.

Opiates are prescribed for pain. But chronic use can actually lower one’s pain threshold. Chronic opiate use—with prescribed medications—can lead patients to feel more pain—so then it seems natural to ask for and take more and stronger pain meds.

Caregivers of people with chronic illness are living with huge unspoken resentment and grief. It’s not what they imagined retirement to be. Where is the fun? Where is the adventure they worked so hard to afford?

So why not some wine or one of those new drinks? Boomers who may have used pot in their 20’s and gave it up for work and family often romance the idea of being able to use pot again after retirement. But the pot they are buying today is not what they smoked in college. It is much stronger and laced with coke and speed and other drugs.

Check on Your Hospital and Your Doc

Here is an important article from yesterday's Wall Street Journal. The opening stats are a bit scary but all the more reason to not be shy when dealing with your doc or any hospital staff. Ask, ask slowly, and ask again. Do not be intimidated or rushed. It's your life. Caregivers--you too. Politeness has to go out the window. Take a look at this, and ask your doc if they have read it too:

Here's the link:

http://online.wsj.com/article/SB10000872396390444620104578008263334441352.html?mod=googlenews_wsj

The Best Death

We had a talk about death last night. It was a good talk. In fact, a great talk. Death is an open conversation for us. It’s always there weaving in and out of every conversation and through our running chats about food and books and friends and politics and yes, sex.

But there was something else last night. Cancer, I’m sure, opened the conversation, but somehow we went deeper than before. We talked about the how of death, and would we help each other die, and how would we know we were ready. What part would be pain, and what part would be exhaustion, and what part would be a sense of readiness?

And all day today as I went back to that conversation I realized something new—something that has changed for me and that, maybe, is also a bit of acceptance.

For so many years—especially in my younger years—I always imagined that a sudden death and an unexpected quick death would be the very best kind. When we play that hypothetical, “How would you like to die?” game I’d always thought that a plane crash or explosion or something sudden and relatively painless would be the way to go. I’ve heard many others say, “die in my sleep” or “die in my lover’s bed” or “die in my recliner watching my team win”…all to suggest that a fast, unexpected death would be the best kind.

But today I realized that I want more from death than that. Maybe this comes from being a control freak, or maybe its because I love process, or maybe it’s because I really do want to place each of my scarves in a friend’s hands—but I want time to know when I will die. I want to know it will be six months or six weeks. I would choreograph each of those scenarios very differently. I want to say good-bye and give my things to specific people. I want to make love dying. I want to say words and hand out books.

And given all of that I realized something about cancer that I never considered before: It may be the very best way to die. Cancer, for the most part, gives warning. Many cancers have some kind of timetable. Cancer lets you have at least a little time to say, “Wow, here we go. This is really going to happen. What do I want now?”

For all the war against this thing and all the battles waged, and all the agendas that insist we should have no cancer consider this: If you accept that you will die, and you know you will die of something, cancer could be the best way to die.

Marie Howe Reads at SUNY Albany September 20th

For Albany readers: Here is an upcoming event that you should not miss. Marie Howe, poet, teacher, caregiver, and as of next week, Poet Laureate of New York State, will be reading her poems at SUNY Albany next Thursday September 20^th at 8pm. The reading and ceremony will be at Page Hall, 135 Western Avenue, at 8pm.

My favorite of Marie’s books is called, “What the Living Do”. Here is the poem that titles her stunning collection of poetry:

WHAT THE LIVING DO

by Marie Howe

Johnny, the kitchen sink has been clogged for days, some utensil probably fell down there.

And the Drano won't work but smells dangerous, and the crusty dishes have piled up

waiting for the plumber I still haven't called. This is the everyday we spoke of.

It's winter again: the sky's a deep, headstrong blue, and the sunlight pours through

the open living-room windows because the heat's on too high in here and I can't turn it off.

For weeks now, driving, or dropping a bag of groceries in the street, the bag breaking,

I've been thinking: This is what the living do. And yesterday, hurrying along those

wobbly bricks in the Cambridge sidewalk, spilling my coffee down my wrist and sleeve,

I thought it again, and again later, when buying a hairbrush: This is it.

Parking. Slamming the car door shut in the cold. What you called that yearning.

What you finally gave up. We want the spring to come and the winter to pass. We want

whoever to call or not call, a letter, a kiss--we want more and more and then more of it.

But there are moments, walking, when I catch a glimpse of myself in the window glass,

say, the window of the corner video store, and I'm gripped by a cherishing so deep

for my own blowing hair, chapped face, and unbuttoned coat that I'm speechless:

I am living. I remember you.