A Life Worth Ending

The link below is to an article from the May 28th issue of New York Magazine titled, "A Life Worth Ending". It's a powerfully persuasive case for talking to our families--and friends--about how we want to live as we age and how we want to die as we decline.

Let's not fool around with this one: we are going to die. Denial--as this article makes powerfully clear--only ensures that you will die in misery with no dignity and that your family caregivers get to watch you in their own misery with no dignity for them either.

This is bigger than cancer. It's about as big as the Boomer Demographic Bump--lots of us aging rapidly and living longer (not necessarily happy news because we will live longer with more disability and chronic illness).

One powerful quote from this article: "We cured cancer for this?"

Read this article and forward this blog post to your friends and family and kids and in-laws and your book club and Rotary and hairdresser and your ex. Yeah, especially your ex.

Here it is:
http://nymag.com/news/features/parent-health-care-2012-5/

Family on the Beach

We are back from the beach and salt water hair and not enough sunblock and too much ice cream. This weekend felt like old fashioned summertime. Visiting John's mother with loads of extra family added including two babies which just make you smile constantly. Beach walks, family talks, too much food and then some bonus time alone on the beach. Rumors of sharks made it more exciting and real sitings of schools of seals made it sweet.

Somehow we got to here which includes in-laws that I love, family stories that we are part of now, and an ease with past and present both real and normal.

Came home to news of two deaths--a friend to cancer and a former colleague to medication errors. In its own sad comparative way that made the weekend sweeter too. Life is short. The reminders are all around us. I still worry about every little thing and work too hard and want the writing to be "just-so" and then I think, "just for today".

It's a good summer this year. I'm glad we are in it.

Who Has it Harder...

There’s a subtle competition in CancerLand. It happens with both patients and caregivers. It’s called “Who has it Harder?” and it goes like this:

What kind of cancer does he have? Colon cancer? What stage? Stage 3. Oh, that’s too bad. My brother had stage three, and he had a total bowel reconstruction. Oh wow. He had a resection, colostomy for six months, then another surgery. Yeah. It’s hard isn’t it? He didn’t miss a day of work. Oh, he missed a year. I had to take six months off. Quit my job. Retired early. And I had my own scare. Breast cancer two years ago. Me too. Mastectomy? No, lumpectomy but a year of chemo. No chemo but lymphedema forever. Yeah. I can’t do anything anymore. He has….

Maybe it’s because our worlds shrink so much? Maybe the chemo works on our lives just as it does on the tumors?

How do we fight that? How do we not engage in “Who has it harder? Maybe it’s CancerLand small talk? I feel so small I have to make cancer bigger? Or maybe it feels so bad and we feel like no one else understands so we keep the focus on the only thing we now feel expert about.

How to step out of the game? Get a life? Surrender to win?

Dressing the Part

So today was hospital day for John’s big tests. And I was reminded of my guidelines for caregivers in hospitals. It’s dangerously close to Glamour Magazine’s Do’s and Don’ts—but I swear there is science in this advice:

You must dress up. Caregivers listen to me on this. You are thinking “comfort” but your more important goal is “power”. Yes, you have to sit around in these clothes all day but you want to be seen and you want to be heard. And yes, you—like a teenager being told how to dress for an interview—may say “But that shouldn’t matter”. And you're right. It shouldn’t. But here’s reality: It does. And in Cancer Land the stakes are high. The impression you want to make is: See Me, Hear Me…(do you hear the music from Tommy?) and Take my requests very seriously.

No sweats for you. No baggy in the bum jeans. No hair-in-ponytail-with-no-makeup look for you. For the patient? Yes. Comfy time. And no valuables, no watch or wallet. But for the caregiver: you wear your good watch, nice earrings, stylish scarf and make up. It is a kind of job interview after all.

So that was my strategy today. Belly full of nerves and an arm full of bangles. Also I always go with the valet parking. It is not more expensive. They stamp that ticket so it’s free and much nicer, especially when leaving the hospital with a drooswy man.

And John was drowsy! The anesthesia was heavy and his reaction was quite funny. In the recovery room he was lovey-dovey, and curious about every detail of every little thing. Because I have never seen him take a drug or even a glass of wine it took me a few minutes to realize what I was seeing. But when he held up his little plastic cup of cranberry juice and slowly turned it around and around saying, “Isn’t that a beautiful color?” and “That’s soooo pretty” that I realized that he was stoned. Here is the straightest man in the world talking like Cheech & Chong.

That was fun.

The Bitch in the Test

Yesterday morning I left the house cursing like a cartoon character. The string of profanity coming out of my mouth was G%R&A&*^%$#!!@$!!!--and kind of like James Joyce was writing bad words—the nastiest things all strung together with no punctuation…

At work I was better outwardly but inwardly I was a mess of cranky, scared, sad and, well, just disconnected. Luckily it was Friday and luckily I had a lot of basic tasks to do. Head down and uncomfortable I worked the day away.

But still. Yuck.

John’s son came for dinner so I thought maybe it was the stepfamily stuff. It’s always hovering there in the polite way we talk and how carefully we choose our topics when together. We don’t use these words: wedding, marriage, divorce, Mom, sex or affair, and I’m the only one who will say the word cancer out loud.

And I did. That was it. After dinner John and I talked about plans for the weekend and he reminded me that Sunday plans were out because he’d be doing “The Prep” and it hit me:

His big test. The in-hospital colonoscopy, performed by our favorite surgeon is Monday morning at 7am. Oh. Dam. Oh Dam. All that cranky, out-of-sorts misery is about cancer and chemo and The Test racing toward us.

But we are a different couple three years later. And I am a different woman. I said, “Sit and talk to me.” So we bundled on the bed and talked. I said, “What if..” and he said, “It will go like this…”. And I said, “I’m going to be hard on you this time….” And he said, “I’ll listen this time…” and we laughed. And laughed. We played the “If Cancer Comes Back” Game. We talked about our voodoo beliefs and the deals with God we’ve each been making. I was happy to hear the words “beach” and “diamonds”.

Looking forward to making love tonight because Sunday is not an option. The Prep is a mess in every way with its pills and solutions and salves and timers. But the real prep began last night laughing about what used to be and what could come and how we’ll do it together.

Affordable Health Care Act

Here is  a new column called "Bedside" in the New York Times --about nursing and healthcare. This first article by Theresa Brown --an oncology nurse--details how changes to The Affordable Care Act impact cancer treatment.

Take a quick look.

http://opinionator.blogs.nytimes.com/2012/06/23/money-or-your-life/?smid=pl-share

Medical Reimbursement & Cancer's Return

It’s time to complete the benefits election paperwork for both of our employers. We have stacks of paper from his job and from mine. The pile has moved from kitchen counter to dining room table to the living room floor and back to the kitchen. I remind him, “We have to talk about this.” and “How much should we put in the medical reimbursement account this year?” I’m avoiding it too, pushing the task to him, noting my particularly unfeminist separation of duties.

This has gone on for a month.

Last night, annoyed that the pile of papers is back in the living room, I nag again “We have to turn those in on Monday—let’s decide how much to put in this account.” In my head its all about the number—how much should we designate pre-tax to allow for medical expenses next year? My internal juggle –I assume—is about making sure we have enough to cover dental for two adults, eye care for two sets of aging eyes, and enough for deductibles, co-pays and prescriptions. It’s a calculation.

Why is this so hard? Why are we procrastinating?

My annoyed voice bothers him so at 11pm we get out the calculator and paper and start in. “OK, so if we each need new glasses this year, and if we assume we each need a crown and a couple of cleanings, and what about any medicines?” But as we talk my stomach starts to hurt. Really hurt.

And then I realize that what we are not talking about is this: What if cancer returns? How do we do that calculation? How do we guess at those huge copays and the multiple prescriptions? But really, how do we talk about this seemingly money thing, which has nothing to do with money?

My stomach hurts. I take a breath. I say to him, “This is all about cancer.” We choose this number now, but on your next test in July we’ll know for sure if the cancer is back. Then what? And the “what” isn’t about the money. I tell him that we talk about cancer and don’t talk about cancer. It’s always out there. Out there in the tests and the meds and the lingering neuropathy, and it’s out there in the obituaries of people younger than us who “endured a brave battle with lung/breast/colon/brain cancer.”

But this simple form that asks for a single simple number has yanked cancer into our living room hard and fast and frightening.

We sit up and talk. The number was easy. The conversation was not. But we’re not so far apart in our numbers or our beliefs about what to do if and when. “We have great sex,” we say, “and we can have great cancer and even great death.” We can do this.

It is intimacy of the most devastating kind and the most real. 

Vulnerability Backlash

Oh the morning after! I’m having a vulnerability attack after reading in public last night. The Arts Center of the Capital Region invited me to read from the new book and from my collection of essays and I talked about this blog and John’s cancer and our relationship, and about “The Amy Winehouse House”.

The best validation was watching the faces of people in the audience that I know are part of Cancer Land—they got it. They know the condescension that accrues around cancer and the pastel politics of treatment speech. But I also worry that I shocked some by calling Lance Armstrong “One Ball”. But really. And now reading today’s New York Times, if “One Ball” turns out to be “I doped my own balls”….what will we do with all those yellow bracelets?

But my overall feeling today is run and hide. I went out in public and read out loud. And now, well, just breathe into it, and wear pink, I guess.

Fashion Tips for Caregivers at Chemo

The question arises: What should a caregiver wear to chemo? There is no official dress code but think again. My favorite look: Khakis with a black linen shirt worn over a black tank top (layers are good) black ballet flats (they signal a causal insouciance) and my new necklace—black pearls inserted among silver waves. This is the gift from John: subtle, stylish and very me.

Hospitals, doctor’s offices and even at chemo-Looking good makes a difference. Leave the sweat pants and polyester at home. Go for neutrals, polish and natural fibers. (There are enough chemicals in CancerLand for everyone.)

Diana Vreeland, the legendary editor of Vogue wrote, “The one presenting the most style has the most power.”  In this powerless situation, style is a consolation.

God. Help. Us.

And I mean that literally. In yesterday’s New York Times story about the Vatican’s censure of Sister Margaret A. Farley for her book about human sexuality there is a quote about the Catholic Church’s view of masturbation. Masturbation, self-pleasure, sanity-making, stress-relieving, coping mechanism. The act that may keep teens from having sex too early and that may keep marriages intact and that may keep adults of all ages sane and healthy (Dr. Oz please weigh in here.) No.

Regarding masturbation The Vatican said, “The deliberate use of the sexual faculty, for whatever reason, outside of marriage is essentially contrary to its purpose.”

How in God’s name can this help anyone? And what does the Catholic Church say to couples in CancerLand who have lost part of the “sexual faculty”. It’s time to vote with our checkbooks. Or go immediately to your local Episcopal Church and sign up.

Happy Birthday Baby

Yes, it’s John’s birthday, and instead of getting smaller, his birthday gets bigger and more special. The American Cancer Society has as its tagline the phrase, “The Official Sponsor of Birthdays”. Kudos to whomever wrote that. I hope they got a huge bonus because they nailed the mission and the meaning.

For birthday 61 John gets three celebrations.

Last night was the Big Date Birthday—out to dinner, all dressed up, appetizers, mocktails and even dessert. That’s a splurge for us in dollars and calories. Tonight the small “family” dinner—Dave shares his birthday with Susan so we have a two-fer supper. Home cooking—something for everyone—vegan, sugar-free, sugar-plus, high protein, lo-carb and instead of a cake we have the extraordinary Graetners ice cream. Tomorrow the sexy celebration--behind closed doors—with candlelight and another extraordinary dessert!

Each birthday we celebrate together has that feeling of one step away and one step toward. So it becomes a joy to make them happy and funny and sexy.

When Doctors Grieve

I have heard more than one story about oncologists who treated a patient for years and then when the patient died the family never heard from the doctor. Or the doctor didn't call or write or come to the funeral. And you wonder, "How can they do that?" The patient and their family believed this person was a partner, in fact, they may have used that language themselves, "We'll do this", or  "We'll work together." But then a death and "we" feels like, "next."

And you wonder, does anyone talk about this in the back room at the oncology center?

This article from May 27th New York Times may help to explain some of it--and also the high cost of doctor's denial and grief. It's a shame really. If death is framed as failure for an oncologist, how much of that shame gets projected onto the patient and their family.

And here too you'll read about how a doctor's grief over a past patient may be affecting your treatment. Oh, we so think that cancer treatment and oncology is a science but really it's more of an art and a blend of psychology and chemistry and grief. Read on. The link is below:


http://www.nytimes.com/2012/05/27/opinion/sunday/when-doctors-grieve.html

Enjoy Every Sandwich

Lee Lipsenthal was a doctor, researcher, and President of the American Board of Integrative Holistic Medicine, and the medical director for Dean Ornish's Preventive Medicine Institute. So if there was someone who knew the causes and cures and alternative perspectives on cancer it was Lee.

Lipsenthal died young. He died of esophageal cancer. He wrote this book after his diagnosis, during his treatments and into his dying. He was not able to cure his own cancer but he was able to cure his fear of death. He was able to die fully alive. It's a terrifically thoughtful book, especially coming from someone whose profession kept him close to the best of Eastern and  Western medicine.

You can click on the link below, or go to your local bookstore, pick up a copy and read the first three pages of chapter one. You'll be his after that.


http://www.randomhouse.com/book/215689/enjoy-every-sandwich-by-lee-lipsenthal

Spiritual But Not Religious

I taught a class yesterday at The Beverwyck Community in Albany. The topic was SBNR--"Spiritual But Not Religious". The group was terrific --we talked about the values of spiritual well-being, and how--if your spiritual life is outside of traditional religion-- you practice your spiritual life and make  community.

Here are a few of the notes I jotted down about spirituality and religion:
Spirituality is about my essence, my core, my insides, my ability to perceive and experience myself in the context of something that transcends my daily experience. Spirituality is the lived expression of my beliefs.  Spirituality is the way we respond to the spirit of a Higher Power. 

It's the way that I live out what I believe.

 Religion is a set of beliefs, practices and often a language for a certain way of searching or a specific kind of deity. Religion defines or describes certain specific ways of behaving or acting to find that deity. At its best Religions have spirituality or bring us to spirituality, but not always. 

Religion is about loyalty to institutions, clergy or rules. Spirituality is about loyalty to justice and loyalty to compassion. Religion is about “Who’s in and Who’s out”—us against them, who’s right and who’s wrong, while spirituality rejects dualistic ways of thinking.

Religion and spirituality need not be at odds—religion at its best is spirituality in community. 

The Glorious Debris

“Every one of us

 is called upon, probably many

 times, to start a new life.

A frightening diagnosis, a

marriage, a move, loss of a job…

And onward full tilt we go,

pitched and wrecked and absurdly

resolute, driven in spite of

everything to make good on a

new shore. To be hopeful, to

embrace one possibility after

another—that surely is the basic

instinct…..Crying out: High tide!

Time to move out into the

glorious debris. Time to take

this life for what it is.”

--Barbara Kingsolver, from High Tide in Tucson

A Judge's Plea for Pot

In today's New York Times is a provocative and empathic OPED piece by Gustin L. Reichbach, justice of the State Supreme Court. In this piece he describes his experience with pancreatic cancer and his use of and need for marijuana to help him stand the pain and nausea.

This is an important issue in healthcare. Reichbach writes, "This is not a law and order issue; it is a medical and human rights issue."

Take a look at this article and please forward this into the healthcare community.

Here's the link:

http://www.nytimes.com/2012/05/17/opinion/a-judges-plea-for-medical-marijuana.html

Memoir of a Debulked Woman

A new book by feminist scholar Susan Gubar describes the experience of treatment for ovarian cancer. The New York Times review of her book says that ovarian cancer has been called "Breast cancer's poor neglected cousin." More shockingly is also says that, "Ovarian cancer lacks breast cancer's public recognition for a terrible reason: so few women live to write about it".

The title of Gubar's book is provocative. We learn that the standard treatment for advanced ovarian cancer is called "debulking"--surgery in which as much tissue and as many organs as possible are removed in hopes of removing as much cancer as possible.

As awful as that description may be, and the reality of the surgery must be, this is a moving and powerful book written by an amazing scholar and writer. She leaves little out, as the surgeons left little in, and she gives us a moving picture of the inner life and decision making process of a woman living with, and dying of, cancer.

Here's the link:

http://www.nytimes.com/2012/05/06/books/review/memoir-of-a-debulked-woman-by-susan-gubar.html?smid=pl-share

Colleen's Story

Planned Parenthood is also a partner in CancerLand. Even I forget that sometimes. But take a minute to watch this very short video clip--one minute...and you'll see why they are such an important part of our cancer care community.

MMOB

Mind My Own Business. I am writing this acronym: MMOB everywhere this week. On my planner, my to-do list and even on a Post-it in my car.

As a caregiver it can be hard to sort out sometimes, but I’m working at it. Years ago a great play about the right to die was called, “Whose Life is It Anyway?” I’m reminded that even though I may care about his life and his health—they are both his, not mine.

But, again, it’s tricky when you are the caregiver and the consequences of another person’s choices might eventually tumble into your lap. But this is where having good boundaries, and maybe a Black Belt in Alanon, can come in handy. (I do think that every caregiver qualifies for Alanon—the free, anonymous program for family members).

I have to say MMOB when he doesn’t want to take the B vitamins that will help his neuropathy. And I say MMOB when he scoffs at the baby aspirin that can prevent colon cancer. And I say MMOB when he says he might skip the next round of tests that the doctor recommends. And I say it also when his kids are struggling and if his ex has stuff going on. In each of these cases the consequences might tumble back on to me later, but if I take them on now I’ll have no peace of mind at all.

I also have to have a quiet moment and be honest with myself. It’s too easy as a caregiver to pretend that the reason that I mind other people’s business is because I am kind and altruistic. I might say that I only want him to be healthy or them to be happy or her to be at peace, but really? In reality it’s all pretty selfish—The reason that I want any of that for them is so that I can be happy and so that I can have peace. I get caught in that old control fallacy.

In truth the best way for me to be happy and to have peace is not by getting everyone else’s life straightened out—(even in my head and even in my driving alone in my car fantasy time. Yes, guilty.) But my peace will come from detaching and letting go of their lives, and putting the focus back on myself.

Yes, much easier said than done, but I am slowly learning that being “selfish” is the most unselfish thing I can do. So I’ll scribble this little note to me where I can see it every day MMOB and I’ll mind my very own, all the time growing and changing, business.

Hope Club on the Go! in Albany

I heard the most wonderful news. The Hope Club of The American Cancer Society (Formerly Gilda's) is offering their free, emotional, educational and social cancer support services in new locations. This is great. Hope Club is taking the show on the road, so to speak, to several additional locations:

Monday nights at New Horizons Christian Church, 79 Osborne Street in Albany

Monday nights at Delaware Community Library, 331 Delaware, in Albany

Wednesday nights at Lincoln Park (Eagle and Morton) in Albany

Thursday nights at Berkshire Bank Community Room in Rotterdam.

And a Troy location coming soon!

This means Hope Club help and access to lots more people.

Shavina Richardson, MSW is the Outreach Manager for Hope Club. Call her for more info, times, dates, programs. Her number is 518-782-9833 ext 34 or on her Cell at 518-925-8380.