Wednesday, October 31, 2012

November 1st-Day of the Dead

On November 1st I celebrate Dia de los Muertos, or Day of the Dead.  It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. It’s become one of my favorite holidays partly because it’s a good spiritual counterpart to Halloween.

Except for the candy, October 31st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them.

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones. We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love.

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived.

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process.

I remember my frustration when I was grieving and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance.  But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end.  This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.”

I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brother Larry I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone.

Though he died several years ago my feeling about my brother is that I have misplaced him; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him. 

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like.

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories and we’ll laugh.

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death ends a life but not a relationship. Who would want to close the door on that?

Tuesday, October 30, 2012

Tree of Life

In most forms of shamanism the sound of the drum generates the trance state in which the shaman travels back and forth among the three realms: The Heavens, the Earth and the Otherworld.

The interconnectedness of these three realms is universally represented by The Tree of Life, which is rooted in the underworld, bears fruit on the earth, and reaches with its topmost branches into the heavens.

--from “When Women Were Drummers” by Layne Redmond

Monday, October 29, 2012

Storm Ready Reading

I cancelled my writing week on Cape Cod.  We grocery shopped and bought extra batteries. John made meat loaf and casseroles that we can eat cold if necessary. We called kids and parents and friends who are near big water on the East Coast. I'm very touched by the number of friends stepping up to help family members just in case. Here at home it feels more like an adventure than a disaster. But then it has not really begun.

Yesterday watching people grabbing videos I felt so grateful to be a reader. If we have power I'll watch movies too, but there is this blessing and bonus of being a reader--to know that we can entertain ourselves for hours and days with the simplest technology: turning pages. And with the coffee table and bedside tables piled so high with books it's hard not to think, "Oh boy, extra reading time."

The folks I think about today are those in Cancer Land. How to get to chemo? The nurses who will work double shifts. The chemo equipment running on generators and the extra worry. I constantly think about the 5FU folks who will wear the nasty beeping pumps through all of this.

Tuesday, October 23, 2012

Poverty and Cancer

It’s election time and as a friend pointed out to me, “No one is talking about poor people”. Even Democrats are staying in the safety zone of discussing the “struggling Middle Class”. But here in Cancer Land we have to talk about cancer and poor people.

People living in poverty take a much harder hit from cancer.

One reason cancer is harder on people living in poverty is that they are diagnosed later in their illness. They have less routine screening and less preventative care. Yes, I know there are all those “free” screening tests available, but really, if you are poor, have a couple of kids, no car and work a part-time job you are most likely having to choose between milk, Pampers and the $6-9 round trip bus fare to go to a health center (and spend the day waiting) for your “free” test.

So you cross your fingers and wait. You take your kids to the doctor but put off your physical or Pap test or Mammogram. Forget colonoscopy—who’s going to drive you home?

So it takes a lump or some bleeding or some pain to get your attention and by then things have advanced.  And then…it’s still different if you are living in poverty.

Our romantic ideal—and my reality, maybe yours too if you’ve had cancer—is being surrounded by friends and family who help you. The caregiver support group. We had an amazing team of helpers for John—meals, rides, laundry, errands. And one of the reasons that happened is that we have a lot of friends who drive, who have appliances, who have jobs with lots of flexibility, who have discretionary income—who have middle class lives.

But if you have been in poverty for a while it’s probable that your friends are poor too. So they can’t give you rides, or take your kids, or give you a week’s meals. And no, your best friends are not taking you out to lunch and pitching in for that $800 chemo wig. Not gonna happen. Emotional support for sure but no practical stuff.

And if the caregiver resource center or the support groups or the yoga classes are in the suburbs guess who gets to go? Yeah, even if it’s free it doesn’t really help.

Those of us who have had cancer—or a loved one with cancer and were able to do it the middle class way  (just the relief of having a car) have to think about those extra blessings. And then we have to figure out what we can do to give a lift to those who don’t.

Saturday, October 20, 2012

Leonard Cohen on Marriage

I’m reading the book, “I’m Your Man”—it’s the new biography of poet/songwriter Leonard Cohen. I’ve loved his writing forever, and his music of course, and I am coming to love his contradictions: a ladies man who is a monk, a fabulous performer who hates to perform and a homely man who is supremely attractive.

He said this about marriage:

Marriage is the hardest spiritual practice in the world. Anybody can sit on Mount Baldy for hours on end, weeks, months. But it’s nothing compared to marriage. If you’re really there, really present, for marriage it’s self-reflection 24/7. Who can take that?

Thursday, October 18, 2012

The Cancer Triangle

Now we are in-between. It is its own strange time. We are making holiday plans, shopping for birthdays, talking about gifts and trips and life—as if cancer is over. But is it over ? Or only away on a trip of its own? They say that people who have cancer are never really over it. Once you know this can happen to you it’s always there hovering in the background. That's true for caregivers too. It’s there in the back of the closet--that shirt, and the back of the fridge--no more lasagna--and in the medicine cabinet. Will we ever toss the anti-naseua meds? It is there in the relationship too. Always a third party. A strange relation who never quite leaves.  Will we ever have a relationship that is just us? Or will there always be a triangle: me and him and cancer?

Monday, October 15, 2012

In Cancer Care, Cost Matters

An important article on the OP-ED page of today's New York Times regarding the cost of cancer drugs and how those costs are passed on to consumers. Bach, Saltz and Wittes from Sloan-Kettering Cancer Center authored this piece (link below) describing the decision of Sloan-Kettering to NOT offer a new drug --Zaltrap--for colorectal cancer.

Very interesting and maybe surprising to hear this from the preeminent cancer center in the world where you'd expect them to try everything no matter the cost. But these docs have decided that more expensive is not necessarily better. They also explain how monthly outlays for cancer fighting drugs have risen from $4,500 per month ten years ago to drug regimens that now cost $35,000 per month. Yes, per month.

This is a short piece and worth reading. Even if you have great health insurance or Medicare no one can afford this.

Here's the link:

Friday, October 12, 2012

Live Strong and Wrong

Lance Armstrong has hurt the sport of cycling, and he has hurt the world of professional sports, he has hurt his teammates and fans as well, but there is another group of people that Lance Armstrong has hurt badly: Cancer patients and cancer survivors and all the residents of CancerLand.

Now we know that he misused lots and lots of drugs and hormones and additives and he used suspect medical practices to improve his performance. The testimony is making clear that he also bullied teammates and staff members into participating.

But what about all those yellow bracelets? What about the unbearable hubris of his “I got cancer but I can still win the Tour de France”. What about Live Strong and Lie; Live Strong and Wrong? Live Strong and capitalize on years of testosterone abuse possibly leading to testicular cancer and then capitalizing on that cancer?  What feels the worst is suggesting to other cancer patients that they too can power on and climb cancer’s hills and wear the yellow jersey, but oops forget to mention I abuse my body—and others --mercilessly.

I know this is tricky territory. We’re not supposed to blame the victim in CancerLand. But now we know that all those yellow bracelets bought him so many free passes and so many looks the other way.

I remember feeling sad when Lance and Sheryl Crow broke up. But now I wonder, “What did Sheryl Crow know?” I’m glad she’s out.

And I just gotta say, here at The Amy Winehouse House, we never liked him.