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.

 

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.

 

Willie Parker vs Reproductive Oppression

Dr. Willie Parker

Dr. Willie Parker

“The Racialization of Abortion,” Willie Parker titled his talk; “A Dirty Jedi Mind Trick.” He then spent about 45 lively, provocative minutes elaborating on the theme.

The occasion was a recent Grand Rounds presentation at the University of California, San Francisco School of Medicine, where he addressed a standing-room-only crowd of (mostly) young interns for an event that more commonly draws a smattering of attendees. But when Willie Parker comes to town, it’s a good idea to bring in extra chairs. Parker is an African American physician, a provider of abortion and reproductive health services to women who would otherwise be denied them, current board chair of Physicians for Reproductive Health, a ferocious defender of women’s rights and fearless citizen. He is also this writer’s personal hero.

Parker explained in his opening remarks that his “is heart work and head work. Dr. Martin Luther King said the heart can’t be right if the head is wrong. (King) also said we have guided missiles and misguided people.” On the podium, delivering a rapid-fire lecture in behalf of reproductive justice, Parker is akin to a guided missile consisting of equal parts passion, outrage and statistics. The youngest of six children whose mother sent them to church three times a week, he speaks with the cadence and conviction born of those roots.

“There are over six million pregnancies per year in the U.S.,” he says. “Half of them are unintended. Of the unintended pregnancies, half end in births; half in abortions. One in three women under 45 will have an abortion. While unintended pregnancies have fallen among the upper classes, they have increased 29% among the poor. Blacks and Latinos are disproportionately likely to have unintended pregnancies…”

And it is at this point that Parker’s inner preacher takes over. “People,” he says, “we’re gonna get ugly for Jesus.” It is his challenge to those who attack him, most often fundamentalist Christians, for protecting the reproductive rights of his mostly young, Black clients. Often they also accuse him of participating in “Black genocide.” It is this myth — that abortion is a government plot to eradicate the Black race – that leads to the Dirty Jedi Mind Trick theme.

“It is epidemiological mischief,” he explains. “They take data, put a spin on it that is not intended, and then start a ‘call-and-response’: You have white people saying abortion is racist, getting Black people to say Amen. They can put a cultural war in your framework. It’s important that we recognize the significance of this message, and debunk it.”

In addition to the epidemiological mischief there are outright lies. Former presidential candidate Herman Cain, an African American Tea Party Republican, said in one speech that 75% of abortion clinics were in Black neighborhoods, to encourage African American women not to have children. Parker says the correct figure, according to the Guttmacher Institute, is 9%.

“At its core,” Parker says of these efforts, “it is patriarchal and insulting. They assume a woman is not capable of making her own decisions about her own body.”

What’s needed now, to combat all this, Parker says, “is a new framework, to define this community problem as Reproductive Oppressionon. Reproductive oppression is the control and exploitation of women and girls and individuals through our bodies.” Parker cites the long history of reproductive oppression that includes “forced breeding during slavery, sterilizations, and human experimentation on Puerto Rican women for the contraceptive pill.

“Current examples of reproductive oppression,” he says, “include limiting access to reproductive healthcare, family caps in welfare, and federal and state laws restricting access to abortion.”

But there is hope. Parker cites Atlanta-based SisterSong and its formidable co-founder Loretta Ross as embodying the principals of reproductive justice. Parker lists these as:

1 – Every woman has the right to decide when to have children.

2 – Every woman has the right to decide if she will not have a child.

3 – Women and families (deserve) the resources to parent the children they already have.

4 – Every human being has the right to primary sexual pleasure.

Anti-abortion forces would certainly argue against at least the first two. Parker’s message to the young interns was that it’s not just argument, but twisted myths and dirty tricks that are being used to deny those rights. He maintains it’s the responsibility of the medical community, among others, to stand up for women who are suffering from being denied, to fight against reproductive oppression.

In all likelihood, Willie Parker will keep right on leading that battle.

  *   *   *   *

(Read Dr. Parker’s statement on the recent Supreme Court ruling against restrictive Texas abortion laws: http://prh.org/)

 

There’s Hope for Reproductive Justice

Art by Megan Smith

Art by Megan Smith

Let’s hear it – one more time – for the Millennials. Especially the youngest Millennials, just now reaching or approaching voting age. A generation unto themselves.

Invited to speak at a recent “Awareness into Action” day at Drew School, a private college preparatory day school in San Francisco, this writer went with some trepidation into a classroom set up for about ten high school students. Who – when she hasn’t been a high schooler in more than a half century – knows high school students today?

My workshop was on Reproductive Justice. Other choices the students could make included workshops on Mindfulness, Parks Conservancy, Anti-Racist Dialogue, LGBTQ issues and Immigration Law (to name a few.) I figured if 5 or 6 girls showed up it would be fine. By the time we were ready to start there were 14 girls and two brave (and handsome) guys around the table and sitting on chairs and tables in the back corner, plus one teacher keeping an eye on it all.

For openers, I’d written several facts on the whiteboard:

A woman dies of cervical cancer almost once every two hours. HPV vaccine prevents most cases of cervical cancer.

17 states mandate that women be given counseling before an abortion that includes information on at least one of the following: the purported link between abortion and breast cancer (5 states); the ability of a fetus to feel pain (12 states); long-term mental health consequences of abortion for the woman (7 states.) None of the above are true.

Then I told my own story. The story of a 22-year-old who had never had sex – after all, nice girls did not have sex before marriage in 1956. A victim of what would today clearly be workplace rape, I did all the dangerous things that women desperate to end an unwanted pregnancy are increasingly doing today. When nothing else worked, I had a back alley abortion by an untrained man who probably had not even washed his hands.

“I think,” I said to the roomful of attentive faces, “we’re going straight back to the dark ages.”

Not if these young people have anything to say about it.

Aware that they are among the lucky ones, they are concerned about the unlucky. They seemed a little taken aback by statistics like this one:

In 2006, 49% of pregnancies were unintended. The proportion of unintended pregnancies was highest (98%) among teens younger than 15.

. . . and by other data about how widespread is the denial of access to reproductive healthcare for poor women and girls (and men and boys) in more than half of the U.S. “It’s just wrong,” said one student.

So what do you think you can do to change things, I asked.

“Vote,” came the first answer, before I even finished the question.

“We have to learn to listen to people we disagree with,” said another student, who had been rather vocal in her description of political villains. “You may have to bite your tongue,” I said. “Yeah, I know,” she replied. “Because we have to learn how to have dialogue.”

“We just have to know the laws,” said another, “and work to change them.”

“We need to support these organizations, too,” commented another student, tapping the table with some of the materials I had distributed from groups like Advocates for Youth, Planned Parenthood and Sea Change.

For this writer, who lived through the worst of times, the workshop brought hope for the future of reproductive justice in the U.S. Returning to the worst of times is not on the agenda for these Millennials.