Surviving to live another day

It started innocently enough: I was complaining about being short of breath at a dinner party. Several physicians were at the table; one suggested that it might be possible to increase lung capacity by doing exercises with a spirometer. “I’m not a pulmonologist,” he said, “so I don’t know; it’s just a thought.”

Incentive_spirometer

The thought was planted. I fired off an email to my primary care physician (we love Kaiser Permanente) asking if she knew of such a thing, and/or might refer me to someone to give it a try. She replied with a request that I come into the office so she could evaluate me. Well, grump, grump; all I wanted was a quick fix, but anyway. It takes all of about 10 minutes to get to the Kaiser Medical Center. I arrived for an 11 AM appointment.

The good Dr. Tang patiently explained that she did not prescribe via email. And because it had been 2 or 3 years since we last examined the heart/lung situation she would like to do another work-up, to see about this shortness of breath business. She went very lightly on the issue of my being 83 years old for heavens sakes, although she did mention she had 60-ish patients in worse shape than I. (This is a compliment, coming from one’s physician whom one reminds of her mother, although I was still looking for some magic way to walk uphill without having to stop and catch my breath.)

She then ordered a zillion blood tests, an EKG and a chest X-ray. Still grumping a little, I set out for all these, vowing that if even the smallest of lines appeared I would just come do it all another day. It took me roughly 3 minutes to get in for the EKG, less for the X-ray, and when I got down one more floor to the lab and pulled ticket #372 the automated voice was already saying “Now serving #372 at Station #4.” After dutifully following all these instructions, I went home to take a nap.

Within an hour, a voice mail message arrived from my doctor. “Your tests are fine, I don’t want to alarm you. But I’d like for you to come back in right away. Just tell the front desk you’re here.” Alarmed, I set out for the Medical Center once again. Lung cancer. Definitely. A spot on the lung showed up on the X-ray, and I will definitely die of lunch cancer in the immediate future. fear

Fortunately, the 10-minute drive didn’t allow too much time to contemplate my impending demise. “No, your X-ray is fine!,” she said. “Your lungs are fine! It’s just this one test that came back pretty high. It’s a screening test for possible blood clot. These tests are set very high because we don’t want to miss anything. Still, I want to be sure there’s no clot there that could indicate a pulmonary embolism causing your shortness of breath.” OK, I prefer not to have clots floating around in my bloodstream.

So does Dr. Tang. Whereupon she ordered a CT scan – which meant walking uphill a block to the hospital where they have those fancy machines (and radiologists to read what the machines report.) “Once you’re done,” she said, “come back to the office and as soon as we have the results we can talk about them.” I set out on the brief uphill walk. Pulmonary embolism. Definitely. Isn’t that what did in my mother at age 70? Embolism, aneurism, something blood-clotty. I’ll probably die of pulmonary embolism before I get back down this hill.Grim reaper

It is now close enough to closing time that most Kaiser people are closing up. But the CT scan people wait for me, hook me up to the dye thing and run me back and forth through the machine. I walk back downhill, mildly optimistic because nobody gasped while I was getting dressed in the cubicle several feet from the scan people. With nobody now at the receptionist desk, I walk into the nursing/examining room area and tell a smiling nurse that I’ll be outside if Dr. Tang needs me. And sure enough, in another 5 minutes – not enough time to consider calling the crematorium – she comes bursting through the door saying she’s so glad I waited.

“As I said, these screens are set very high so that we don’t miss anything,” she begins. “In your case, there was nothing to miss. It was just a false positive.” I exhale. We talk briefly about how I might increase my exercise regimen if possible – which might even address the shortness of breath issue; I concede that I am, indeed, 83.

On the way home, no longer planning to die in the immediate future, I count the cost: six hours, several hundred dollars co-pay. And I give thanks for our Kaiser membership, modern medical technology and my good doctor.

happiness

 

 

Breast Cancer? Ask questions!

In honor of International Women’s Day (even if I didn’t quite get it finished in time,) this brief message is about a book recently re-issued by Dr. William H. Goodson III that should be in the hands of every woman with breast cancer, wanting to understand breast cancer or helping someone who is going through breast cancer.

Pink flower

It’s Your Body . . . ASK is a guidebook for talking with your doctor about breast cancer. I would’ve given anything to have had it when I had breast cancer, and a mastectomy, a dozen years ago. Maybe I would’ve made different decisions, maybe not. But the reality is this: most women, unless they have had medical training, would never think to ask a question like “What are the side effects of removing axillary nodes?” Personally, I didn’t think to ask about nodes at all. Other than considering the size of my cancer, in fact, questions I might have asked about its rate of growth, alternative treatments, follow-up therapies – – were mostly not discussed because I didn’t know to ask them.

This is a book that gives not just answers (it offers many answers about families, about hormone-based therapies and other issues) but more importantly: questions. If you, a breast cancer patient, know the questions, your doctor needs to give you the answers. What’s that lump about? What about these other pains and symptoms I have? What are all of my treatment options?

(I would say, here, Full disclosure: Dr, Goodson is a friend of mine. But it would be more braggadocio than disclosure. Bill Goodson and I shared a few discussion program podiums It's Your Bodyseveral years ago when his gripping novel about sexual violence against women, The Blue-Eyed Girl and my Perilous Times: An inside look at abortion before – and after – Roe v Wade were both newly released. I’m a writer. He’s a Senior Scientist at California Pacific Medical Center Research Institute; a recognized leader in breast cancer care who has been (among other things) a Professor of Surgery at the University of California San Francisco and President of the San Francisco Medical Society, and is listed in The Best Doctors in America.)

Credentials aside, It’s Your Body . . . ASK is worth a look. It offers a pathway through turbulent times, which can be far less turbulent if you have some help in steering your own ship.

Check it out.

Talking Your Way into a Better Death

Angelo Volandes

Angelo Volandes

“If you do something to my body that I do not want,” says physician/author Angelo Volandes, “it is assault and battery. But if I do the same thing to you in (a medical situation,) it is standard of care.”

Volandes thinks this last is a bad idea. He is on a campaign to change the way American doctors and patients, and indeed the country at large, understand what is done to American bodies at life’s end. He spoke of this campaign, and his new book The Conversation that outlines it, at a recent Commonwealth Club event in San Francisco. When he’s not taking time out to promote the book and the campaign, Volandes practices internal medicine at Massachusetts General Hospital in Boston and is on the faculty at Harvard Medical School. He is Co-Founder and President of Advance Care Planning Decisions, a non-profit foundation dedicated to improving patients’ quality of care.

“Ninety percent of people want to die at home,” Volandes says; “most die in hospitals. There is a misalignment between the type of medical care they want and what they get.” About this unwanted care? “If you’re in the hospital and get unwanted care you never bargained for, I still get paid for it.”

After watching too many patients endure end-of-life treatments he was sure they would not have chosen, Volandes started an unusual practice: taking every one of his patients to visit the intensive care unit, and some to visit the dialysis unit. Once they gained a better understanding of what some of the aggressive treatments – CPR, breathing machines, etc – actually looked like, the patients almost always moved away from “Do everything” to comfort care as their choice.

The basic change Volandes believes is needed begins with a conversation between physician and patient. Those conversations do happen, and there is now Medicare reimbursement, but few physicians find them easy, and few patients know how to inaugurate them or what to say. “Never did a senior physician have to certify that I could talk to a patient,” Volandes says. “The patient needs to know ‘What are the questions I need to ask? What are my options?’ Life’s final chapter needs to be written – but the problem is, I’m writing it (instead of the patient.)”

This writer has been advocating for individuals to write their own final chapters for over two decades. With others writing those chapters instead, the costs are monumental and unnecessary – and millions of Americans die after undergoing painful indignities they would never have chosen. Physician aid-in-dying – approved by a majority of doctors and 7 in 10 Americans and now legal in five states – is one key piece of the puzzle. But the elephant-size puzzle piece is how to get every one of us to make known, well before those “end-of-life” days arrive, what medical care we do or do not want.

Volandes’ conversations could put that piece in place. Every person alive who takes time for the conversation (and for writing it all down) will likely die a better death.

 

 

On Being a Blessing

There was an invisible pall hanging over the banquet hall.

An annual feel-good celebration of a cherished cause, the room was filled with friends and supporters of the San Francisco Free Clinic. The Clinic offers medical care for the uninsured; the pall had to do with the new President-Elect’s pledge to increase the ranks of those uninsured by unknown millions by immediately repealing the Affordable Healthcare Act.

health-care

For 23 years, SFFC supporters have filled the same banquet hall. The annual event, initiated by the late San Francisco investor/philanthropist Warren Hellman and his wife Chris, generates the entire budget for SFFC’s operation. Not coincidentally, the San Francisco Free Clinic was founded 23 years ago by the Hellmans’ daughter and son-in-law, Tricia and Richard Gibbs, two young physicians who decided to throw over the prospects of their lucrative medical practices in favor of starting a free clinic for the growing ranks of uninsured in need of quality medical care.

(Full proud disclosure, this writer and her husband have been supporters of the Free Clinic since its opening day.)

A highlight of the annual event has always been brief closing remarks from the host, and after Hellman’s death, this task fell to the Drs. Gibbs. This year, Richard Gibbs said a few words and then turned the podium over to his wife.piggy-bank-w-stethoscope

“One thing I have now learned,” she said, “is never to write a speech the day before an election.” She went on to explain how the Free Clinic has made incremental progress in its mission every year since its founding, and she had prepared remarks about that narrative with the expectation that this would continue. With the election of Donald Trump, though, comes the realization that the story of ongoing progress – Clinic staff not only provide care, they regularly guide clients into finding affordable insurance – will encounter a speedbump. Acknowledging that many in the room probably voted for Mr. Trump, and that politics would be inappropriate to the event, Gibbs said she still had wanted to find a way her remarks could be relative and upbeat.

So she turned to the story of Abraham. Gibbs is a serious student of the Torah, and would not have had to spend extra time on recalling that story. She noted that Abraham’s narrative was not incrementally always upward, but had its own speedbumps.be-a-blessing

“God told Abraham to be a blessing,” she said. “And I realize that’s what we can do. You are all a blessing to (the Free Clinic.) We can all go out and be a blessing.”

For election week in California, it was a reassuring thought.

 

Age, Agility and National Stamina

It is a little known but verifiable fact that this writer is a graduate of Circus 101. Well, I completed the course, that is, some five or six decadespast my turning-cartwheels-in-the-backyard days.

The author and sister Mimi, circa 1940

The author and sister Mimi, circa 1940

This comes to mind because of all the recent stamina talk. At the time of my circus experience I was several years younger than the current candidates for president of the United States. I am still the age of Ruth Bader Ginsberg, and frankly, Justice Ginsberg and I (I am not officially authorized to speak for my 1933-babe sister) resent the stamina talk. She, of course, is making her debut (speaking only, opening night) with the Washington National Opera this year; I’m afraid opera performance is not on my bucket list. But still.

Stamina-wise there is at least the circus thing. As I recall, my late-life circus experience began with an article in the San Francisco Chronicle about a class offered by the San Francisco School of Circus Arts (now Circus Center) titled Circus 101. It sounded interesting, and at least worth undertaking for a good story. So I called the Circus School.

“Could a reasonably flexible 60-something woman be eligible to take your Circus 101 class,” I asked the nice lady at the other end of the line? She replied, essentially, if you’ve got the money we can work you in. “You can set your own limits,” she said.

So I showed up for the first class, raising the median age by two or three decades, and quickly learned my limits: upside-down is not for 60-somethings. Oh, I could still do upside-down, headstands with my feet on the wall or the occasional cartwheel; but then I tended to get dizzy and throw up, which is not in the curriculum. I found I was very good, though, at balancing the peacock feather on my chin and at being part of the human pyramid; I always got to be the top of the pyramid because nobody wanted to step on the little old lady. I was also quite good at the Ooze – a sort of backward roll-over with a collapse at the end.

In my class was a lovely Chinese-American girl named Yvonne, who measured approximately 24-18-24 and could juggle three balls before we even started. By the second class her husband Ken had been talked into joining. Ken and Kit, another husky young man who showed up at the same time, could perform great feats of strength and skill, but because they had all those muscles getting in the way I could beat them at grabbing my ankles and doing bend-overs and such that they couldn’t even approximate – which made me feel initially quite superior.

Rola-bola performer, not the author

Rola-bola performer, not the author

All feelings of superiority quickly disappeared. We learned the egg roll, the diablo and the rola-bola, that last being a balancing act on a board set on a large pipe, which when circus people do it looks easy as pie. It is not. (Nor is juggling four balls.)

I did discover that I really shone at the human caterpillar. This begins with a base person on all fours (hands and feet, not knees.) The next person rests on top of the base person, feet crossed, hands on the floor, and additional caterpillar people are similarly arranged. The rear legs and all hands move in unison, theoretically, until somebody giggles.

Is any of this relevant to today’s world, nearly two decades later? Well, it provides food for thought and some great metaphors.

One can only hope that everyone on the political spectrum will have the stamina – not to mention agility – required for running the country at all levels and branches of government. And that our collective community can master the rola-bola without turning into one great Ooze.

 

Loss, Love and Loyalty

broken-heart

Several decades ago a close friend of mine lost her only son in a senseless, tragic accident. He was in his late teens, on his motorcycle, on his way to work at a part-time Christmas season job. All of which added to the unspeakable sadness: a promising life cut short amidst the merriment of a season of joy.

Her friends gathered around to do what we could. We brought food, made lists of callers, tried to keep track of daily needs. My friend’s daughter, a best friend of my own daughter, suddenly found herself the middle child of three girls, all bereft of the one brother they had so loved.

In the large, shifting, changing, sorrowing group of those who came to the house  were a number of young men also in their late teens who had been friends of the one now gone from their midst. They said to the bereaved parents, “We’ll always be here for you. We’ll always remember Mark, and represent him in your lives.” The kind of thing people often say at such times.

These were teenagers. Ordinary kids starting out in life – who had been in their own share of ordinary teenage mischief. In the ensuing years they had their own share of ups and downs. But as it turned out, they were true to their word. They were there for Mark’s parents at Christmas and New Year’s, graduations he would have shared, special times he would have been a part of.

Time passed, Mark’s friends matured as his parents (and this writer) aged.

Recently, Mark’s father died. I happened to be back in town at the time – though like many of those young people I had gone on to life elsewhere – and was happy to be able to be with my old friend and her daughters at his memorial service. It was a bittersweet time: he had lived a full and honorable life; old friends had come to celebrate that life and talk of the good times we had shared. My daughter, still best friends with Mark’s sister although they live on opposite coasts, was there with me.

As I looked around the gathering after the service I slowly began to recognize middle-aged men I had known all those years ago. Several had married women I recognized — also from all those years ago. They were now telling stories of their own children who are starting college or launching their own new lives. They were Mark’s representatives. The stand-ins for their long-ago friend whose memory they would not let die, whose presence they would certify to the mother who lost him so long ago.clouds-stock-image

How to make sense of it all, young life cut short, long life come full circle? How, indeed, to make sense of life and death and loss and continuity?

Mark’s friends, I think, help answer those questions. Out of loss and tragedy come love and loyalty. Out of singular death comes communal life. Out of anguished sadness comes humanity. We all come and go, but we’re all in it together. For a few years or a few decades – but together.

 

Caregiving and the fight-flight-freeze response

Judy Long

Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.