When I heard that Jessie Gruman had died, that her powerful voice on behalf of patients had been stilled and gone silent years too soon, I thought of Phillipe Petite, the high-wire artist who famously tread a cable strung between the two World Trade Center buildings back in 1974.
Jessie’s balancing act did not take place on so visible a stage, but her death-defying dance equally amazed those who knew, worked with, respected and loved her.
On the one side, she was persistently pulled down by cancer. There was Hodgkin’s lymphoma in 1973 when she was just 20, setting the stage for repercussions of treatment that would dog her ever after: cervical cancer eight years later; colon cancer in 2004; and a diagnosis of stomach cancer in 2011 that returned after a too-brief hiatus. There was also pericarditis, a dangerous heart condition.
Counterbalancing that burden was the uplift of a woman whose “bouts” with cancer shaped, but never defined her. She was a social psychologist who was an early part of work on the chronic care model; the founder of a policy and research center dedicated to empowering patients in health care and in health; a prolific writer and author of a landmark book on what to do with a diagnosis of serious disease; and for many, a personal inspiration.
On the morning of July 14, Jessie finally fell off the tightrope, as we all must eventually do, dying at home. She was 60 years old.
You can’t really understand the outpouring of affection, appreciation and aching loss Jessie inspired just by browsing her impressive bio. She was sharp and funny, with wry asides directed at any pretension exhibited by allies or adversaries alike.
However, Jessie did far more than dish and dis. She was a superlative builder; of an organization, yes, but more importantly, of a body of work that prompted government policymakers and uncounted health care organizations to pay greater attention to the unmet needs of patients. She also reached out directly to fellow patients to help. In all these activities, she married intellectual rigor and careful attention to evidence – techie trendiness, for example, did not impress her – with emotional honesty. Jessie spoke what often goes unspoken, candidly acknowledging how horribly scary and alone it feels to be seriously ill.
As she wrote in her book, AfterShock: What to Do When the Doctor Gives You – or Someone You Love –a Devastating Diagnosis:
Every time I have received bad health news, I have felt like a healthy person who has been accidentally drop-kicked into a foreign country: I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map and I desperately want to find my way home.
Jessie told one interviewer: “I want people to know how to take care of themselves and pay attention to the urgency of their situation even when their heart is broken.” Later, she repeated that theme in an article for Health Affairs that called for policies to support patients and their families in their time of distress. Continue reading “Jessie Gruman: Tribute to a Tightrope Walker”
Filed Under: THCB
Tagged: Cancer, Jessie Gruman, Millenson, patient engagement
Jul 17, 2014
The American Society of Clinical Oncology recently made public nearly all of the abstracts — more than 5,000 pieces of research — that were selected for the ASCO annual meeting, which kicked off in Chicago on the last day of May.
Sifting through those 5,000 abstracts would be an almost inhuman task: each abstract contains 2,000 characters. That’s 10 million characters of information about oncology created by experts that’s now available for the public to parse.
But as remarkable as the ASCO abstract drop is, that research is not the only overwhelming trove of communication on cancer created by doctors. One ASCO abstract (based on research by me and W2O colleagues Greg Matthews and Kayla Rodriguez) tells story of how, over the course of 2013, U.S. doctors tweeted about cancer 82,383 times. At 140 characters a tweet, that’s nearly 12 million characters.
We know there were 82,383 tweets because we counted them. Using our MDigitalLife database, which matches Twitter handles with verified profiles from the government’s physician database, we scanned all tweets by doctors for mentions of dozens of keywords associated with cancer over the course of calendar year 2013.
Continue reading “What Twitter Tells Us about the War on Cancer”
Filed Under: THCB
Tagged: ASCO, Brian Reid, Cancer, Oncology, Physicians, Social Media, Twitter
Jun 2, 2014
Do not tell me how to feel!
For those who may not read through to the end, here is the take home: you do not get to tell me how to feel or what my attitude should be, no matter who you are.
Sure, it’s more comfortable for me and the people around me when I’m have a positive attitude, but that does not mean that I have to live “all bliss all the time” like some insane American cable television station. Being positive does not mean pretending that nothing is wrong because… cancer, people!
A young woman who, I think, just turned twenty-two posted this on her Facebook page: “That’s the thing about pain. It demands to be felt.” She knows what she is talking about, by the way.
It does no good to pretend that emotional pain does not exist. It does no good to pretend that it’s not there. The only way I’ve ever found to get through pain is to recognize it, sit with it, walk through it to the other side. Sometimes that process leaks out into the environment and then I don’t smile prettily at everyone around me. Sometimes I’m snotty and bitchy and generally not one of Jesus’ little sunbeams. Sorry about that, but… cancer, people!
Here’s another news flash. A positive, determined attitude will not cure cancer, no matter what the popular media tell you. The following quotations are from the American Cancer Society:
In 2010, the largest and best-designed scientific study to date was published. It looked at nearly 60,000 people, who were followed over time for a minimum of 30 years. This careful study controlled for smoking, alcohol use, and other known cancer risk factors. The study showed no link between personality and overall cancer risk. There was also no link between personality traits and cancer survival.
Continue reading “Because Cancer.”
Filed Under: Uncategorized
Tagged: Cancer, Knot Telling
May 21, 2014
Consider that for the last year or so, we have been treated a deluge of entreaties to reduce our salt intake, with the American Heart Association going so far as to claim that daily sodium intake should not exceed 1,500 mg. This puts it at odds with the Institute of Medicine, and now European researchers whose data indicates that the healthy range for sodium intake appears to be much higher.
Our conversation about sodium, much like advice about purportedly evil saturated fats and supposedly beneficial polyunsaturated fats, exemplifies a national obsession with believing eating more or less of a one or a small number of nutrients is the path to nutritional nirvana.
A few weeks back, an international team of scientists did their level best to feed this sensationalistic beast by producing what’s become known since then as the meat-and-cheese study, because it damned consumption of animal proteins.
Continue reading “Cheeseburger Please, and Make It a Double”
Filed Under: THCB
Tagged: animal-protein vs. plant-protein, Cancer, Diabetes, L-Nutra, Meat and Cheese Study, Obesity, Population Health, Vik Khanna, Wellness
May 14, 2014
My wife calls them “hand-me-ups”… things we inherit from our kids. My ex-fashionable shirt that my son wore in college.Our semi-vegetarian diet my daughter adopted in high school. The dog at my feet that came visiting for the weekend, three years ago.
Our lives are enhanced and modified by the most unexpected of teachers, our children. The mentoring of our progeny keeps those of graying years at least partially youthful. Still, I was astonished to hear this week, the words, “Dad, you need to starting doing drugs.”
The “dad” being addressed is 93 years old and has advancing cancer. He is tired, nauseas, anxious and sleeps poorly. Though he likely has a number of months to live, he has become withdrawn. Despite my usual medical brew, his incapacitating symptoms are without palliation.
Dad is miserable. Enter his daughter with the solution. The “drug” she is talking about is the treatment de jour, marijuana.
How did this happen? We raise our kids to be good, honest, mature citizens; we drive them to soccer, suffer through years of homework (do you remember dioramas?), and do the whole college obsessive-compulsive tour thing. In addition, above all, we beg our offspring to stay away from pot, pills and addictive mind-altering potions.
Now they turn on us, pushing ganja in our time of need. How did we go wrong? Actually, it is we that missed a great opportunity.
50% of Americans have inhaled marijuana at some point in their lives. More than 25 million of our neighbors have used it within the last year. Those that imbibe are of a decidedly younger demographic. The oldest citizens, especially those of the Greatest Generation, are much less likely to have experience with cannabis.
Fortunately, once again, youth presents the solution.
Continue reading “Dad, You Have to Inhale”
Filed Under: Uncategorized
Tagged: Cancer, James Salwitz, Marijuana, marijuana legalization, Patients, Wellness
May 6, 2014
After my last post about “the gift of cancer” I must say that CLL has felt much less like a gift this month.
Joining the ranks of those with “a diagnosis” has given me a some insight into what our patients face all the time.
Recently, I received my second dose of humility. I capped off a truly exhausting week in the hospital with a routine lab follow-up.
The last day of my 85-hour week I had my CBC checked, and my platelets dropped from the 100s to the 30s.
My first reaction was denial. Lab error.
Unfortunately, they dropped further the next day and I realized that the little red bumps on my legs weren’t some skin reaction, but petechiae. Bummer. Turns out that in addition to the 2% of people diagnosed with CLL under age 40, I also joined the 20% who develop idiopathic thrombocytopenic purpura (ITP).
The treatment of choice for ITP is prednisone 1mg/kg. So after a visit with my oncologist, I started 80mg of prednisone.
I realized with more than a little chagrin that I have a double standard about therapeutics. I was surprised at how much I despise being on prednisone.
I had never taken it before, and I would guess that I prescribe it every week, if not every day, that I work in the hospital. I have always felt that prednisone is fine for my patients to take.
Steroids work to help clear up that asthma flare, quickly improve that gout pain, or even help with a burst of energy in the last days or weeks of life for a terminal patient.
But for me? No thank you.
Continue reading “The Gift of Cancer”
Filed Under: Physicians, THCB, The Vault
Tagged: Brett Hendel-Paterson, Cancer, leukemia, Oncology, Physicians, Wellness
Apr 30, 2014
I don’t recall if I’ve ever mentioned my connection with the Cleveland Clinic Foundation (CCF). I probably have, but just don’t remember it.
Long-time readers might recall that I did my general surgery training at Case Western Reserve University at University Hospitals of Cleveland. Indeed, I did my PhD there as well in the Department of Physiology and Biophysics.
Up the road less than a mile from UH is the Cleveland Clinic. As it turns out, during my stint in Physiology and Biophysics at CWRU, I happened to do a research rotation in a lab at the CCF, which lasted a few months.
OK, so it’s not much of a connection. It was over 20 years ago and only lasted a few months, but it’s something that gives me an obvious and blatant hook to start out this post, particularly given the number of cardiac patients I delivered to the CCF back in the early 1990s when I moonlighted as a flight physician forMetro LifeFlight.
Obvious and clunky introduction aside (hey, they can’t all be brilliant; so I’ll settle for nauseatingly self-deprecating), several of my readers have been sending me a link to a story that appeared in the Wall Street Journal the other day: A Top Hospital Opens Up to Chinese Herbs as Medicines: Evidence is lacking that herbs are effective.
I also noticed that Steve Novella blogged about it and was tempted to let it pass, given that I had seemingly lost my window, but then I realized that there’s always something I can add to a post, even after the topic’s been blogged by Steve Novella.
Whether that something is of value or not, I leave to the reader. So here we go. Besides, if this article truly indicates a new trend in academic medical centers, it’s—if you’ll excuse the term—quantum leap in the infiltration of quackademic medicine into formerly reputable medical centers.
It’s a depressing thing, and it needs to be publicized.
Continue reading “Traditional Chinese Herbalism at the Cleveland Clinic? What Happened to Science-Based Medicine?”
Filed Under: OP-ED, THCB
Tagged: alternative medicine, CAM, Cancer, Cleveland Clinic Foundation, David Gorski, herbal medicine, quackademic medicine, reiki, science-based medicine, traditional Chinese medicine (TCM), Wellness
Apr 29, 2014
I recently read a blog by Dr. Danielle Ofri in the New York Times “Well” blog about how as a physician she learned to respect the patient’s wishes even when they contradict her professional inclinations. It’s called Doctor Priorities vs Patient Priorities.”
She writes that the patient is looking through a “wide-angle lens” that takes in the whole of his life while the doctor’s lens is “narrowly focused on the disease that pose[s] the gravest and most immediate risk”. She saw her challenge as entering into dialogue with her patient in order better to understand the wider perspective of his whole life and to work with him to find the most acceptable way to deal with his disease.
If only Dr. Ofri were an oncologist. If only she were my oncologist. My last appointment with my onco, Dr. G, was a disaster. Not only have I not been back to her, I have not gone to any oncologist since then. Part of that is because I don’t want any treatment at this time; that’s still true.
But if I am going to be very honest, and I try to be that always, it is also because of that disastrous appointment with Dr. G.
First of all, she would not respect my decision not to have any more chemo and refused to order any scans unless I would a priori agree to chemo if she decided it was indicated. She also mocked me. It took a long time for me to tell that second bit. In fact, from that day in August 2013 until just recently—seven months!—I only told one or two other people about what happened.
The evening of that last appointment, Dr. G called me at home to continue the argument. I found myself apologizing for causing her distress. Yes, I know that’s ridiculous, but that is how I react to being bullied. Borrowing the words of a friend who really gets it, I apologize to others for their hurtful behavior and then I internalize it. I haven’t talked about Dr. G mocking me because I feel ashamed.
Continue reading “Whose Cancer Is It, Anyway?”
Filed Under: OP-ED, THCB, The Vault
Tagged: Cancer, culture of health, doctor/ patient relationship, Oncology, provider bullying, shared decision making, Telling Knots
Apr 16, 2014
About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.
She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.
The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.
The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of an unsung hero who helped thousands of people.
There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.
“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.
Continue reading “The Legacy of the Tarceva Diva”
Filed Under: Uncategorized
Tagged: Brian Loew, Cancer, Lung cancer, Patient Communities, Social Media, Support Groups, Tarceva
Feb 27, 2014
Once-upon-a-time, when a patient said they were taking a vitamin, most doctors would simply shrug their shoulders and say, “well, I guess its OK, it couldn’t hurt.” There was little research to judge the affect of vitamin supplements, so there was no reason to take a stand. That is no longer true.
Now we have published data on many vitamins and we can say that for most people they do not work. More importantly, there is increasing research that says manufactured, chemically synthesized nutriment compounds in a pill, can be deadly.
For this reason, I am likely to ask my patients if they are taking a vitamin and, if so, which fabricated additive and how much. Therefore, I asked Bill, while he was in the office receiving chemotherapy for Hodgkin’s disease, what alternative therapies he was using.
When he informed me that he swallowed a multivitamin (MVI), large doses of Vitamins C and E, as well as a B complex preparation, I advised him to stop.
To my astonishment he responded, “Well, you only want me to do that because you make a lot of money on chemotherapy, and vitamins might put you out of business.”
Bill’s response, he lack of trust in my advice, disturbs me at several levels. He fails to understand and does not wish to learn the present state of science regarding nutrition. In addition, there is a major problem regarding his perception of my motivations and therefore the veracity of my guidance.
Let us be clear; in the absence of malnutrition, malabsorption and a few uncommon medical conditions, there is absolutely no reason to take a multivitamin. They do not prevent or fix anything. Originally developed for starving populations and hungry soldiers during the Second World War, they have no place in a society with access to a broad range of foods.
More importantly, there is increasing data that people taking a multivitamin may become less healthy.
Continue reading “That Vitamin There Could Kill You”
Filed Under: OP-ED, THCB
Tagged: alternative medicine, Cancer, doctor/ patient relationship, James Salwitz, multivitamins, practice of medicine, Wellness
Feb 25, 2014