Mortality--Christopher Hitchens

The link below is to a terrific review of Christopher Hitchens last book, "Mortality". This appeared in today's Wall Street Journal. Hitchens, a prolific writer and critic, died last December at age 62 of esophageal cancer. All of his writing is important because he was one of our sharpest, smartest social critics and, because he kept writing all the way through his cancer to hours before his death.

As Henry Allen writes here, Hitchens was  a critic of cancer and of "battling cancer". "People don't have cancer: They are reported to be battling cancer--You don't hear that about long-term sufferers from heart disease or kidney failure." (I suspect it's because we still, on some level, blame people for those illnesses.)

Here's the review. Take a look. The book is available now.

http://online.wsj.com/article/SB10000872396390444812704577605110400199868.html

Stepfamilies and Caregiving Facing Facts

Earlier this week I wrote about the situation our family faced with step kids and stepparents faced with cancer care. I’ve heard from many people who faced the double dilemma of cancer caregiving when one of the adults has children from a previous marriage. These are tough situations.

But hard as it is we are not alone.

Here are the facts:

–Between 52% and 62% of all first marriages will eventually end in divorce.

–About 75% of divorced persons eventually remarry.

–About 43% of all marriages are remarriages for at least one of the adults.

–About 65% of marriages involve children from the prior marriage and, thus, from stepfamilies.

–60% of all remarriages eventually end in divorce.

–One of three Americans is now a stepparent, a stepchild, a stepsibling, or some other member of a stepfamily.

If you then consider those stats next to the increasing incidence of cancer and the increasing reality of cancer as a chronic or terminal illness and you have a lot of people who are struggling with how to manage caregiving in a stepfamily.

There are lots of issues: Who is in charge? What does the patient want? If the patient can’t speak who gets to make healthcare decisions? They can be big decisions like approving a treatment or stopping treatment, and smaller ones like accepting discharge plan. When the spouse says, “Let’s take him home” but the kids say, “I can’t help out” there are bad feelings and serious issues.

There is also the money. Who decides how to spend down an account or to travel for a second opinion? Who pays for home health aides? As our healthcare system changes we will all be asked to pay more out-of-pocket—but out of whose pocket? And with money-as-power such a strong cultural value—does the adult stepchild with more money out vote the stepparent?

It can get hard and ugly and painful for everyone.

Prevention is best. If you are in a stepfamily—as the parent or the child—make sure there are a will, a living will, a healthcare proxy, a medical power-of-attorney and a durable power of attorney in place. You don’t always need an attorney to create these for you but it’s smart to have a professional make these documents because they could be challenged when feelings are on fire. And cancer and death are flammable.

The most critical part of this planning though is that it forces conversation between the married partners. The adults have to carefully consider all of the what-if’s and state their preferences. You don’t want to leave an unhappy stepchild and stunned stepparent to share critical medical decision-making. It’s not only ineffective it’s just too painful. And the patient is most likely to suffer.

When Stepfamilies Face Caregiving

This week I taught a caregiving workshop and had the opportunity to talk about another layer of caregiving challenges that families face. It’s one that folks bring up one-to-one after a workshop because there is still shame and discomfort. But the truth is that the Boomer Bump that brings us so much caregiving and huge changes in our medical system also produce more stepfamilies. There are simply more of us in the 50 to 65 group. So we have more marriages, divorces, remarriages, second families, and therefore more stepparents and step kids. 

What do you do when the patient is a stepparent or the caregiving involves stepchildren? It can be that the natural parent needs extra help with their spouse but the kids are stepchildren who feel disloyal or angry, or maybe the ill parent has kids who don’t want to share caregiving duties with a “new” husband or wife.

John and I faced that and it was painful. His adult children –angry about their parents divorce --would not participate in any caregiving. And even refused to visit John in the hospital. We had so many friends who did pitch in, and that caregiving team bonded so well, that we were not hurt logistically, but emotionally the hurt was huge.

That is the tricky part of step family caregiving: there is enough old and new pain to affect everyone: parent, stepparent, the exes and even the new spouses on both sides.

Every issue that stirs the pot in family caregiving: time, money, travel, decision making, fear and facing death gets an extra jab and extra level of pain in a step family. The standard advice about having a family meeting to make a caregiving team may not work if exes are refusing to work with a new partner, or still tugging at the kid’s loyalties.

While family therapy may be the best call for stepfamilies in non-crisis time, when cancer caregiving hits there is not time or energy for that luxury. That’s when good friends and the couple themselves have to make a conscious decision to make a new family of choice.

Oncology Day

Thursday was Oncology Day—this part of our life has a routine to it now. I know what to wear, what to bring, the Medical Power of Attorney is in my bag. We come in two cars—him from home and me from work. We check in along the way. It adds fun and distraction to the anxiety we both feel.

I always offer to fill out the intake for him. I want to check yes to mood swings and breast tenderness for him and where it asks about tingling I want to say, “Yes, frequently—especially after 11pm, and more if we read some erotica first”. I really do wonder if the nurse would notice.

I bring my own list of questions into the exam. I note whether they ask about sex. The Physician’s Assistants are so much better about saying, “Intercourse” with a straight face. It makes me grin to know that my ranting and blogging has had some impact. I still like to say, “swallow” occasionally just to shake things up.

The news is good. Some oral chemo a little bit longer then graduation to six-month intervals. The alternative is in front of us at all times in the waiting room. When we leave we make a point to look each person in the eye and smile. The chemo waiting room is one of the loneliest places in the world. It’s almost as if the drugs cause invisibility as well as nausea.

We synch our calendars for the next round, and then home to a great dinner and great sex as our lollipop for a good doctor’s visit.

Elegant Dance with Cancer

Here is something eloquent and beautiful and cancerful. A video of writer David Rakoff on cancer, bodies, laughter, friends and dance.

Click on the link below and scroll a teeny way down to click on the video. Enjoy!

http://www.thisamericanlife.org/blog/2012/08/our-friend-David-Rakoff

That Old Cape Magic

We are home from Cape Cod. Always a great trip even if weather is bad or the family is fussy. The Cape has been part of our lives a long time--separately and together. But we have our differences here too: He is a  bayside guy and I am an oceanfront girl. But we have learned to accommodate our differences: I walk the flats and he watches me body surf.

Cape Cod has long been a part of my caregiving life as well. My real goodbye's to my brothers and sisters and my parents all happened at Coast Guard Beach. Over the years I took all of my pain there and now it's one of my most scared places. When I am on that beach looking at the ocean I have no doubt that there is something bigger than me. Even if I'm feeling terribly powerful and self-important even I know that I can do that--I can't make ocean or waves obey.

Now back to home and work and writing and CancerLand.

Ad Council and AARP and Ads About Caregiving

At last a real media campaign about caregiving. Bravo to AARP and The Ad Council for teaming up to do a series of ads about the challenges of caregiving. Below is a link to an article in recent Time Magazine about the caregivers ads.

As we move through the big demographic bump most of us are now in or about to enter parental caregiving mode and --most challenging--many of us over 45 are able to become co-caregivers--each spouse doing caregiving duties for each other.

When we hear that healthcare can keep us alive an extra ten to 15 years we forget that it's going to be a pretty complicated older decade with lots of caregiving responsibilities. So many of us got an early start and suffered alone or silently. So these ads are very welcome.

http://healthland.time.com/2012/08/16/a-new-ad-campaign-targets-overwhelmed-caregivers/?xid=newsletter-healthland

Happy Anniversary

Today is our wedding anniversary. A really special day. It's about the love and the family and the public recognition of our relationship. It was also the one year post-chemo date, and it is the Feast of Diana and the Ascension of Mary so August 15 is a a really propitious day.

This morning we read our wedding vows to each other and the poems that were our gifts.

We will go to The Pruyn House today to walk through the school house where we were married. The memories are all about fun: Mr. Breslin using the old chalkboard to diagram "With this ring, I thee wed" and explaining to guests the exact parts of speech. The moment when John's  brother quite elegantly explained that his reading was in the car and went to get it while we all talked. That is probably --after our vows--my favorite part of the wedding--it was so calm and loving and fun for everyone.

We are alive, in love, growing, laughing and making love in the time of cancer.

Don't Try to Change Your Man

I love relationship books. I absolutely love them. Given that you’d think I was better at relationships, but maybe it’s just the opposite. Because I see my struggles I am fascinated by what psychology and medicine and theology and even astrology have to say about how to find, make, keep and grow in a loving relationship.

These books are my candy.

This week I’m reading an old favorite: “Change Your Mindset Not Your Man.” By Sally Watkins, MSW. Her advice is pointed and true to her idea—low on theory and heavy on making changes. And boy it’s not for sissies.

One of her main points—and she repeats it --is that most woman have relationship troubles because we lie to ourselves. The man is bad? Well, she says, what red flag did you choose to ignore? If the man is really bad and you are still there, then this is all about you, according to Sally. Yeah, hard to swallow stuff like that. But sometimes those buckets of cold water really are refreshing.

 You will not be surprised that much of her relationship advice is extremely relevant to couples in the caregiving mode. The best way to prevent resentment and burnout is self-care. Radical self-care. Take a day off and even a week off. Sounds crazy right? But a week away can help you to love that person again. And all those people saying, “How can I help?” and “If you need anything…” Call them in and hand over the keys and the schedule.

Yes, some people will think you are nuts, and your partner may think you are nuts, but just keep saying, “Being selfish is the most loving thing I can do for both of us.”

And check out Watkins book. Cancer is a relationship issue too. Cancer makes any relationship a “bad” one. By default you have relationship trouble when cancer is involved. It’s really too bad that oncologists don’t talk about this stuff. But then they are just trying to save bodies while we are trying to save lives.

Women, Cancer and Sexual Pain

When I was growing up my mother loved Ann Landers and Dear Abby. She read them and I learned to read them too. Both writers offered good advice and a picture too of just how dysfunctional families could be. Tolstoy was right.

As a young woman I had a strong reaction to the letters from women of a certain age who wrote to say, “Why doesn’t my husband leave me alone?” They would describe how the man in their life badgered them for sex and they hated it. “Why can’t we just cuddle?” And I would think, “I never want to be one of those women.”

Now that I am woman of a certain age I am more sympathetic but I still don’t want to be “one of those women”. I like sex. But, something that we don't talk about is sexual pain. I wonder now how many of Ann Landers correspondents really meant it when they said that it was a pain to keep having sex?

In today’s New York Times the wonderful Jane Brody writes about women and sexual pain and specifically relates it to cancer treatment and treatment side effects. I thought, “Yes, this is for the Love in the Time of Cancer folks, and it’s also for most women I know –including those who are not dealing with cancer. Chemotherapy wreaks havoc with women’s hormones, as does positive cancer treatments and so do aging, perio-menopause and menopause and post-menopause.

Dryness, tears, pain, no elasticity—and who knew that your vagina could get shorter? All this for women with and without cancer.

But the point Brody makes—the reason I stated writing this blog --is that so few oncologists and medical folks talk to patients and couples about sex, sexual issues and sexual side effects. So thank you Jane Brody!

The article (click below for the link) gives suggestions, recommendations, remedies and references. Hooray!

Here it is: http://well.blogs.nytimes.com/2012/08/06/persistence-is-key-to-treating-vaginal-pain/?smid=pl-share

Healthy Food Libido Boost

In today's paper I read a summary from Dr. Laurie Steelsmith's book about eating healthy to boost libido. I thought I knew some stuff about this--I am always looking--but some surprises here. Below is the link to her recommendations of what to eat and what not eat for a libido boost. Since I started eating more whole foods a few months ago I'm almost there--so reading this gave me the nudge to kep going on my new healthy eating.

What I love in this article--and her book--is that she uses the term libido in the way it was always intended--not just about sex but about life energy and creative energy. They are all one. And if detoxing and eating better gets me to more creativity and better sex--I'm in.

Here's the article:

http://www.timesunion.com/living/article/Women-can-boost-libido-author-says-3760997.php

Leaning Into Sharp Points

Here is what we know about family caregivers:

65% of people who need caregiving rely on family and friends for assistance. Most of these caregivers are women; in fact, the National Caregiving Council estimates that 75% of caregivers are women. The odds are good that you are or you know one of these women. What you may not know is that caregiving is a health and career hazard for women.

 Metropolitan Life has studied caregiving and its economic consequences for many years. They report the consequences of women who are caregivers as follows:

33% decreased their work hours

29% passed up a promotion or training

22% took a leave of absence

20% went from full time to part time

20% quit their jobs

13 % retired early

The costs are very high. So what do we do about that?

Yes, there are lots of workshops and support groups but one of the realities of caregiving life is that caregivers don’t have time to attend the groups they need to. They struggle. And they pray. And they read.

Stan Goldberg’s new book, "Leaning Into Sharp Points", is a gem for a caregiver’s library. Goldberg is a professor, hospice volunteer, researcher and family caregiver. His book is wonderfully straightforward and frank. His advice is platitude-free and that comes from real life experience.

Goldberg not only says “bad feelings are ok” he names them and gives examples. In my many years as a family caregiver and coach for other caregivers I have found that the most energy draining aspect is the bad feelings –those things we think we should not feel and are determined never to admit. Goldberg has been there. He admits them.

Another gift in this book is the chapter on talking to non-caregivers. Based on the statistics about the rapid rate of aging there are fewer non-caregivers around but they do torture us with suggestions, ideas and platitudes. This chapter made me want to make copies to hand out as soon as the well-intentioned, “Now you really have to take care of yourself”, chatter begins.

The book is paperback. The price is right and so is the size: You can fit it in the tote bag to the doctor’s office and the oncology center.

A Poem: Gratitude

When I write the word “Gratitude”

I think recovery.

I don’t think “cancer”.

I think gratitude for him

for me, for this

--surely not this?

We are grateful or we are not.

We say Yes! and Thank you!

All around me well-meaning

friends say,

“You can say ‘No’!”

But I say Yes

I don’t No

Who knew…

“It’s like a relationship on steroids” I

told a friend

then I realized

that was no metaphor.

Vacation Daze

We are home from Pittsburgh. The ‘Burgh is my home town and this was John’s first visit so I felt some pressure to have the City of Champions make a good first impression. And it did.

That’s the pleasure of going home as an adult and as a tourist—I know what I wanted to show off so we stayed on the waterfront downtown and visited the The Scaife Mellon Art Museum and the Carnegie History Museum (my refuge as a kid) and we ate very, very well. We took the incline for dinners up on Mount Washington and the trolley to breakfasts down in the Strip Yards. And the best part for both of us was watching the Pittsburgh Pirates beat the Miami Marlins at PNC Park. Beat ‘em Bucs!

So many memories. Most of them good. But I also found myself narrating my caregiving history as we traveled around Pittsburgh: “This is the hospital where my mother was first admitted; this is where I brought her after her stroke; this is where she lived in her coma; this is the hospital where Larry was finally diagnosed; this is the hospital where I brought Larry every week; this is the hospital where he died.”

And there were other things that I did not say to John but that came back to me in such vivid memory: the route from the airport when I came every other weekend to take care of Sig and then Larry; the restaurant where he fell down and couldn’t get back up and my ache for him over his humiliation; where I shopped on what turned out to be the day of his last hospital admission; the hotel in Oakland where I stayed all those nights so that I could walk to the University Medical Center.

e.e. cummings say that our lives are measured in tea spoons but I measure mine in hospital visits and loved ones cared for.

It was fun to be in Pittsburgh as a tourist and not a caregiver—to reclaim my hometown as an arts rich, sports fanatic metropolis. To perhaps balance the other memories by making summer vacation memories there with John.

Keep Out

“I have never found anything in a man’s wallet, dresser, glove compartment or medicine cabinet that made me happy.”

I used that line in a short story many years ago and it may be one of the smartest things I have ever written to myself. Today I would have to add: cell phone, laptop, iPad and maybe Facebook, though I know many married couples who are in and out of each other’s social media all the time. That gives me the willies. I like a stronger boundary in my coupled life.

This week John is editing some essays I wrote 20 years ago. Many are about relationships, dating and marriage. It’s taken this long for me to feel like he can read what the reading world has read for years. A bit strange maybe, but as I prepare to write a book I’m looking at the line between the written word and the lived word.

But even now, happily married for some years, a man’s wallet still feels like a hot potato to me. 

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.