Paying New Year’s Blessings Forward

noah & zahraIn a new year with meanness and cruelty on the news every day, there are counter forces at work. Here is my favorite Pay-It-Forward story so far for 2019. It involves my lovely friend Eva Zimmerman, who agreed to let me to share it. Eva and her husband, Noah Schreck, welcomed their first child, daughter Zahra, into the world last spring. But the exuberant joy they were having was interrupted by Noah’s diagnosis of colon cancer, requiring surgery in December.

On January 2, Eva posted this story (lightly edited here) on Facebook.

“Noah is home! He has a lot more healing and resting (and eating) to do to get back to his old self and Zahra is being super helpful by screaming and screeching at a newly-discovered ear piercing volume, constantly. We’ll readjust and recalibrate and make this work. We’re thankful to be together.

“We are so fortunate to have so much support. Meals waiting on the porch, welcome signs and ice cream delivered, childcare, and just the love and prayer that we’ve felt this entire time… Thank you, all.eva, noah, zahra

“As I was leaving the hospital with all of Noah’s belongings, taking everything to the car to load it and go pick him up in the patient loading zone, I stood watching a beautiful young black couple comforting each other as they were waiting for the parking lot elevator. The elevator opened, she entered, he motioned for me to go ahead of him, he held the door open for me. As we stood there, heading to the same parking lot floor, he wished me a Happy New Year. I told him that it truly was a Happy New Year, that I was taking my husband home today after almost two weeks in the hospital.

“The woman said, ‘Our son will be here for the next two weeks.’ I told her I hoped he’d be home soon, healthy. She said, ‘Hoping for soon and cancer-free.’ I told her, ‘My husband is leaving today, cancer-free.’ She said, ‘This is why he’s here, they are doing surgery to remove his cancer.’ I told her that this is exactly why my husband has been here, they got it, they got the cancer, and he’s leaving today cancer-free. She and I held hands and I said, ‘I’m sending the blessing to you all now. It’s with you now.’ As we walked to our cars, she told her husband of the chills that went through her and simultaneously, they went through me.noah & zahra1 Though incredibly hard, we’ve been protected through this, because of you all. I gave that protection and blessing back to another family just as we left. It was a moment I’ll never forget. I don’t know their name. But as I write this, I’m watching Noah sleep next to me, and I’m thinking of them, envisioning their son home safe, soon and cancer-free.”

Take that, meanness.

In Sickness, Health & Clutter

Some weeks ago – I have lost all track of time – I embarked upon an adventure with this year’s Not-the-Flu. Whatever it is. A bug you don’t want to mess with, that much I can tell you. One marker I do have: exactly two weeks and four days ago my good doctor – who assured me it was Not The Flu – estimated I was over the worst of it. Oh, well.Cold

The Not-the-Flu means you skip the chills and aches and fevers of the Real Flu (count your blessings) and you probably won’t die. But you still have the existential horrids and wearies, a little cough, snuffles, sore throat, and mostly you want to pull the covers up over your head and feel very sorry for yourself. This is not easy to do if you’re a fulltime caregiver, as I am, which in my opinion entitles me to feel REALLY sorry for myself. The caregivee, for his part, has spent the past weeks saying – every time I saw a potential opportunity to go back to bed and pull the covers over my head – “Why don’t you do that?”

In between, since the Not-the-Flu saps your energy but leaves your brain functional, you are left with the question of what to do with yourself. Leaving the house is not an option except for utter necessities, because staying away from humankind is #1 on the recovery-plan list. That leaves you to read the newspapers – which can definitely make you sicker – and drink liquids and take vitamins. Boring. OR! You can dig out past, present and future writing projects and finish them all. Then what?Clutter-desk

For me, the obvious answer is to de-clutter. A cleaned-out drawer is far more curative to this writer than a super-size bottle of mega-vitamins. So in an effort to keep myself from going totally stir crazy, I have now plowed through three formerly messy drawers, the box of Christmas cards – – – and my desk. This is not to say that orderliness, a virtue!, is an ongoing trait I can claim. Put stuff in drawers, close the drawer, most of the time I’m fine. But actually going through messes, throwing stuff away and neatening up – as we used to say in the old country – this is balm for my soul. And therefore, cure for whatever ails.Clutter-piles

Not so the caregivee. My excellent spouse thrives on piles. Piles of clippings, notes, magazines, letters, papers, God only knows what is at the bottom of some of his piles. They are everywhere he regularly inhabits, a comfort and balm to his soul. So ever since I undertook to clear out a few piles (and okay, filing cabinets too) in the small formerly-office room into which we plan to install a day bed, it has been acutely painful for him.

The Not-the-Flu presented a tipping point. A few hours sleep, say, between 3 and 7 AM when the caregivee is not always quiet and still as a churchmouse, made the day bed (it’s on order) ever more attractive; confinement to the house increased my neatening-up urges about 300%. Clutter-cornerToday emerged a pristine corner, utterly cabinet/clutter free.

In retaliation, the caregivee did what probably any respectable partner so threatened would do: he came down with the Not-the-Flu. Oh, me.

Hearts - 2

 

Can we talk? Can we afford not to?

Family Planning changes lives
Family Planning changes lives (Photo credit: The White Ribbon Alliance for Safe Motherhood)

A thoughtful reader named Lydia left a comment in response to my blog (just below) giving thanks for Mark Ruffalo and his support for reproductive rights. If you’re not into reading comments, here is Lydia’s in full:

So, are you saying that killing your unborn child was a better option than allowing the child to live-maybe to be welcomed into another family’s life, and your secrecy was better than taking action to hold the rapist accountable for what he did? I have had an unwanted pregnancy, too, and as horrified and hopeless as I felt, I allowed my child to live and I have no regrets. Abortion is never the right choice, but I know it sometimes feels like the only choice. That is why women need to pick up the phone and call a crisis pregnancy counselor. Abortion is like suicide. It is a permanent solution to a temporary problem.

If we’re going to talk, we have to listen. In trying to listen to Lydia I hear a couple of points of similarity and/or agreement. She and I each struggled with how to deal with an unwanted pregnancy (hers I suspect much later than mine in 1956.) We both appreciate strong & welcoming families. We both believe women need access to a pregnancy center which might offer help. Maybe we can build on these points. And try to work through some disagreements.

We need to set aside the business of holding the rapist accountable, at least in my case. In 1956, workplace rape was without recourse. I would have been laughed out of town — after destroying the fabric of several families, probably not including his. Today, women often fail to prosecute acquaintances who don’t hear No. Should they be required to prosecute, to relive painful experiences in the name of public justice? I’m not sure. Perhaps they deserve the right to make that decision for themselves, with legal advice if they choose and with the support of loved ones. Should they be required to carry the fetus that results from a painful experience for nine months in hopes that it might — might — be welcomed into another family? I don’t think so. I think they should have the right to choose otherwise, with the support of physicians and loved ones. I think no two such experiences are identical, so blanket dictates seem unwise.

Neither Lydia nor I have regrets about the course of action we chose. We differ on definitions. Lydia equates fetus with child, presumably because she believes life begins at conception. I respect the religions that teach this doctrine. I strongly support their right to protect the life of any fetus they happen to have, wanted or not. I just do not share the same belief about life’s beginnings. My own deeply held Christian beliefs see the beginning of life somewhat later on. But I think neither my religion nor Lydia’s has the right to tell other women — Jews, Muslims, Buddhists or nonbelievers — what they may or may not do with their bodies.

Lydia sees abortion as never the right choice. I see it as complex and personal, but sometimes the right choice. Mother Nature often sees it as the right choice when miscarriage happens. No one but the woman herself can know about her fetus, her body, her circumstances, her life, so I think it’s improper for me to presume to tell her what she must do. Often, counseling can help.

Which brings us to the crisis pregnancy center. Despite the fact that women have reported hearing untruths and accusations at crisis pregnancy centers, I believe many of them offer compassionate counseling and useful information. My greatly beloved daughter-in-law works at a pregnancy crisis center, and I know my daughter-in-law to be honest, kind-hearted and truthful. I support the right of pregnancy crisis centers to thrive and prosper although I do not support their promotion of unscientific theories. If we can talk, can we consider the possibility that pregnancy crisis centers might coexist with regular reproductive health centers? The latter, after all, offer many, many services unavailable elsewhere: information and testing about STDs; contraception and family planning services; pregnancy testing and counseling — even, in some of them, abortion. In that latter case, abortion is nearly always a tiny percentage of total services. Where they are being driven out of business, all of those services disappear and the results are tragic for countless men, women, boys and girls.

I can absolutely guarantee that when abortion is unavailable women suffer and die. I don’t think those on either side want women to suffer and die. Those on both sides want healthy women, few-as-possible abortions, healthy families.

What do you think, Lydia, is there any hope for conversation?

The curious world of cyberspace

Disappearing from cyberspace is a little like being a tree that falls in the forest. A very small tree. Having disappeared from cyberspace myself for a couple of weeks, I am comforted by the fact that the forest is very large.

It’s not that this space disappeared, just that Boomers and Beyond disappeared. Boomers and Beyond is a blog primarily about issues critical to over-50 generations, and it came to pass on  True/Slant.com a couple of years ago. It dealt with health care and fitness and housing choices and brain exercises and driving safety, and often diverted into rants about gay rights and abortion rights and gun control and other miscellany — because the True/Slant folks were a free-wheeling bunch and why should anybody quit worrying about rights and justice when they turn 50? All those profound words are archived in this nifty blog (this WordPress one right here) created by incredible friend-of-B&B-&-this space Mary Trigiani, so that if anyone stumbles into the forest and wants to study a small bush those twigs — OK, enough with the metaphor — are there to be read.

True/Slant didn’t actually disappear; it got bought by Forbes, and is gradually reappearing (as a New And Improved Forbes blogsite) there. Boomers & Beyond is reportedly going to reappear thereon, as soon as a contract appears. In the interim, it is just sitting there inert, and after several watchful readers noticed its inertia (posting anything new isn’t an option at True/Slant any more) I decided to venture once more into cyberspace.

It’s pleasant to meet you here. I hope we’ll meet again soon.

Early cancer tests, surgeries questioned

Was this mastectomy necessary? It’s a question few breast cancer survivors want to ask, and one that few are likely to answer absolutely. But after years of aggressive emphasis on early diagnosis and treatment, some previous imperatives are being called into question. Noting that breast biopsy has long been considered the “gold standard,” a report in today’s New York Times addresses the new rethinking:

As it turns out, diagnosing the earliest stage of breast cancer can be surprisingly difficult, prone to both outright error and case-by-case disagreement over whether a cluster of cells is benign or malignant, according to an examination of breast cancer cases by The New York Times.

Advances in mammography and other imaging technology over the past 30 years have meant that pathologists must render opinions on ever smaller breast lesions, some the size of a few grains of salt. Discerning the difference between some benign lesions and early stage breast cancer is a particularly challenging area of pathology, according to medical records and interviews with doctors and patients.

Diagnosing D.C.I.S. “is a 30-year history of confusion, differences of opinion and under- and overtreatment,” said Dr. Shahla Masood, the head of pathology at the University of Florida College of Medicine in Jacksonville. “There are studies that show that diagnosing these borderline breast lesions occasionally comes down to the flip of a coin.”

Much of the current finger-pointing is toward pathologists, where their money comes from, whether they are ‘certified’ or not and in general, how good a job they do.

In 2006, Susan G. Komen for the Cure, an influential breast cancer survivors’ organization, released a startling study. It estimated that in 90,000 cases, women who receive a diagnosis of D.C.I.S. or invasive breast cancer either did not have the disease or their pathologist made another error that resulted in incorrect treatment.

After the Komen report, the College of American Pathologists announced several steps to improve breast cancer diagnosis, including the certification program for pathologists.

For the medical community, the Komen findings were not surprising, since the risk of misdiagnosis had been widely written about in medical literature. One study in 2002, by doctors at Northwestern University Medical Center, reviewed the pathology in 340 breast cancer cases and found that 7.8 percent of them had errors serious enough to change plans for surgery.

This space has argued occasionally for reconsideration of yearly mammograms and for longer, stronger consideration of other options before a mastectomy is performed. Especially in the case of older women.

Would I insist on further studies or opt for less radical treatment if I were diagnosed with breast cancer today? Probably. Can I undo the mastectomy I had at 72? Not exactly. Second-guessing is beside the point for someone who is healthy and fit, but asking questions won’t ever hurt.

Earliest Steps to Find Breast Cancer Are Prone to Error – NYTimes.com.

Live longer, healthier: prospects ahead

More news just in on the health and longevity front. At the University of California San Francisco medical center, which I can see from my studio window but that’s about as close as I will ever come to claiming kinship, a clinical trial getting underway will investigate the telomere factor. You haven’t been worried about your telomeres? Get used to them. It hasn’t been so long since cholesterol and genomes became household words.

Bay Area women who volunteer for a clinical trial at UCSF will be among the first people in the world to learn the length of their telomeres – the protective caps at the ends of chromosomes that regulate cell aging and may help people live longer, healthier lives.

Research has shown that the length of people’s telomeres is related to their “cellular age” – the health and stability of certain cells in their body. Because telomere length helps determine cellular health, it’s also been identified as a possible biomarker that can reveal information about a person’s overall health. Short telomeres have been linked to health problems like heart disease and diabetes.

UCSF researchers say it’s possible that identifying a person’s telomere length someday could become as common as checking cholesterol levels. A handful of private companies already have started advertising telomere testing to individuals. In fact, two of the researchers involved in the UCSF study are looking into starting their own company to test telomere length.

The study, reported by Erin Allday in today’s San Francisco Chronicle, will concern such issues as what relationship your telomeres’ length have to health and aging in general, and whether you even need to know a lot about the little cellular-ites. “The idea of telling people their telomere length is totally new and somewhat radical…,” said Elissa Epel, an associate professor of psychiatry at UCSF and one of the lead researchers in the telomere study. (On a purely personal, though relative note: you just try not to worry about it all when you are overage — they want women 50 to 65 — for an aging study and the lead researcher looks like she’s about as old as your granddaughter.)

Medical ethicists say the UCSF study makes sense – as more attention is drawn to telomere length as a potential marker of overall health, doctors should understand whether it benefits their patients to get that information or not.

If people can’t change their telomere length, there may be no point in telling them. Telomere length may be similar to some types of genetic testing that tell people whether they’re at increased risk for Alzheimer’s disease or certain types of cancer, said Arthur Caplan, director of the University of Pennsylvania Center for Bioethics.

Some individuals may decide they want that information – but it’s not always an easy decision to make, he said. “You might find out that you seem to be a premature or rapid ager, but whether there’s anything anybody can do to stop it or reverse it, that remains to be seen,” Caplan said.

How much our telomeres will tell us, what use we can make of it all, and whether you and I really want to know — these issues remain to be seen. Or at least, to be discovered in  the coming study. I have absolute trust in the folks at UCSF. If you do too, and you fit the parameters (female living somewhere in this lovely part of California, between 50 and 65) and want to volunteer to be a part of it all, whip off an e-mail to knowyourtelomeres@ucsf.edu.

UCSF to look at new longevity, health marker.

On being treated to death – Part II

Is there a fate worse than death? Yes. In the U.S., often it is the fate of dying slowly: aggressively treated, over-treated and worn down by the system until that fate has made death truly a blessed relief.

Deborah Wright, an ordained Presbyterian minister and writer now working in secular fields while simultaneously serving as personal pastor to many, forwarded an article that proves out the fate-worse-than-death highlighted in this and recent other articles (see June 25 post below.) The fact that stands out, she comments, is that “the length of time we use palliative care services is growing shorter — because we start it too late.”

We start palliative care too late, we treat too aggressively and too long. The opening story in AP writer Marilynn Marchione’s thoughtful, poignant article just published in Daily Finance serves as a classic example:

The doctors finally let Rosaria Vandenberg go home.

For the first time in months, she was able to touch her 2-year-old daughter who had been afraid of the tubes and machines in the hospital. The little girl climbed up onto her mother’s bed, surrounded by family photos, toys and the comfort of home. They shared one last tender moment together before Vandenberg slipped back into unconsciousness.

Vandenberg, 32, died the next day.

That precious time at home could have come sooner if the family had known how to talk about alternatives to aggressive treatment, said Vandenberg’s sister-in-law, Alexandra Drane.

Instead, Vandenberg, a pharmacist in Franklin, Mass., had endured two surgeries, chemotherapy and radiation for an incurable brain tumor before she died in July 2004.

“We would have had a very different discussion about that second surgery and chemotherapy. We might have just taken her home and stuck her in a beautiful chair outside under the sun and let her gorgeous little daughter play around her — not just torture her” in the hospital, Drane said.

Marchione tells other stories of patients who might have had far more peaceful final days — and of patients who chose extensive, aggressive or experimental treatment for a variety of reasons. It should be the individual’s choice. But the reality is that discussion of palliative care or hospice care (there is a difference: hospice involves declining further treatment; with the newer “palliative care” concept some therapies may be continued) simply doesn’t happen until too late. If it happened sooner, many of us — likely including Rosaria Vandenberg — would choose hospice care over aggressive end-of-life treatment.  But physicians are too busy talking treatment, and patients have not considered their other choices. Comfort and peace lose to the system.

An article posted today on the website of the National Hospice and Palliative Care Organization points the finger in the right direction, right at you and me. If we took the time and energy to write our advance directives, and talk them over with family and friends, millions of days of suffering and millions of wasted dollars would be saved.

Recent media coverage on the challenges patients and families face with overtreatment of a life-limiting illness brings the issues of hospice and palliative care and advance care planning to public attention.

“It’s important to remember that quality of life and a patient’s personal wishes, beliefs and values must be a factor when making care decisions brought about by a serious or terminal illness,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization.

“Discussions helping patients and families understand the many benefits of hospice and palliative care must be more common and held long before a family faces a medical crisis,” Schumacher added.

Advance care planning—which includes completing a living will and appointing a healthcare proxy—is somewhat like planning a road trip to an unfamiliar destination.  Very few people would expect to get to a destination safely and comfortably without having a well-thought-out map in hand.   Yet, it’s estimated that 70 percent of Americans have not completed a living will.

  • A living will charts the course for your healthcare, letting your family and health care providers know what procedures and treatments you would want provided to you—and under what conditions.
  • A healthcare proxy or healthcare power of attorney form, allows you to choose someone you trust to take charge of your healthcare decisions in case you are unable to make those decisions yourself.
  • Advance directives can be changed as an individual’s situation or wishes change.

Still, you and I put it off. Or you may be putting it off, at least, and if so you are taking an absurdly unnecessary risk. You could, instead, download free forms, fill them out and avoid that risk.

Deborah Wright has shepherded countless friends and family members through their final days, and knows what a blessing hospice and palliative care can be. Problem is, though, “we start it too late.”

Americans are treated, and overtreated, to death – DailyFinance.