Posted on December 18, 2015 at 08:54 AM | Permalink
Technorati Tags: abnormal, adam baer, autoimmune, cancer, chemo, chordoma, chronic illness, doctors, health, health diversity, health philosophy, health psychology, medicine, neurodiversity, normal, normalcy, nurses, patient advocacy, patients, psychosocial oncology, radiation, radiation, rare diseases, salary, sickness, social workers, stem cells, stem-cell transplant, wellness
Saw something online that blew my mind about how to deal with riptides, so I wrote this quick thing for Men's Journal. I'd read it and watch the video if you ever plan on going into the ocean.
When I first heard that the New York Times was running a series of Opinionator essays about psychology and psychotherapy called "Couch," I was pretty sure I'd have something to submit. I've not only a seen a few professionals in this field over the years, but the woman I married eventually became a stellar clinical psychologist and neuropsychologist in Los Angeles. I like to kid that she's never had the good fortune to be my doctor, but that's of course true: I was never her patient, and she wasn't in this line of work when we met. She first started as a scientist, a researcher. At any rate, I decided that I'd write a piece about the key psychologists in my life, especially because two of them had massively differing approaches, and in fact, one passed away while seeing me with the same disease as me -- and never told me she was sick (such are boundaries). If you've made it this far, here's the link to the story that ran in the New York Times Couch series. Have a read and tell me if you still don't approve of strict boundaries like those which the selfless cancer therapists live by. I hope this honors them in some way. -- Adam Baer
p.s. Some people upon reading this piece don't get the sense that I had tried to honor these people in my life while still being truthful about my experiences with them. The very act that I have told these stories is an act of honoring them, and one can't change a couple of intriguing non-fiction stories into pure praise when one is composing this sort of journalism piece. I also did leave out a lot of info about my experience and both characters (as well as my wife). I don't want to have to say this -- I hope that some people get it -- but the piece itself is in a way a commentary on what we should share and what we shouldn't. And that every case is different, so hard and fast rules may exist but must like music be interpreted with good taste (for example, I could have shared my wife's name and advertised for her, but I didn't; nor did I want to intrude on the life of someone else's family). Thanks to all who read and corresponded with me about this essay. It wasn't easy to write but I felt that it could do some good to share it, and I hope it brings attention to the clinical psychologists (Ph.D.s) who work with cancer patients and their families while continuing to contribute to important research. If you want to donate to a cause look up the good people in your area who do this, and help them.
A lot of you know I've had cancer(s). That it's been tough, that I've been given the chance to write about it. And that I have great health insurance, a huge impact on my family's financial and emotional life. However, what many readers may not know, even if you've read my work, is that buried in a piece for Harper's Magazine that I published I talk about having a malignant tumor in the base of my skull (not my brain) called Chordoma. The piece makes it clear that I continue to live with it. But to make it more clear, this is one of the rarest diseases in America, and very few people, save for the generous experts who have to date saved my life with surgery and radiation and management, know what to do with chordomas, including a lot of doctors and researchers (certainly in LA).
Of course, we're living at a time when a researcher might figure out an ever-better treatment.ut a tiny portion of the population may not realize that this silent, fatal disease and its treatments force us to perpetually fight terrible side-effects (among them, the very serious condition of social isolation), and that if this is just one of the cancers you have/have had, life is never "OK," even if you do your best to make everyone around you feel like it is, lest you seem stranger, weirder, more of a reminder of everyone's mortality, a guilt-inducer. Rarer.
At any rate, the guy linked to in a few sentences is pretty much the only one of our generation, without an MD or PhD, working really hard to lead research and other programs that may help people with this specific rare disease. He and his foundation deserve serious support. His name is Josh Sommer, and his non-profit is called Chordoma Foundation. I'm ashamed that I haven't been more vocal about him and his work, and that most times I don't want to read about this one of my diagnoses. But on a day like today, when I have questions about a certain drug that I need for one late effect of a previous cancer treatment, something that might make my chordoma worse, a question that cannot be answered, I feel lucky that Josh is doing what he does. This call for support is long overdue.
I hope that you read about Josh, and back his group. I learned that I have (a) chordoma because of an incidental MRI taken because of headaches. That means that many other people can have it, and that it can be less rare than we think, because who gets head MRIs for no good reason, and who looks into the heads of the deceased? I'd hate to learn of one more person suffering from this deadly problem, but it's highly possible, and that -- not any sympathy for my situation -- is why I posted this. People with chordoma are often told they may only live seven or ten years.
Some of us who've had the advanced treatments and surgeries are optimistic about living a lot longer, but we could be wrong. Josh, and the people he's working with, are not living in the vagaries; they are living and working for change in the now, and they don't feel their job is done with just one magazine article that appears to be a book review. I hope that I can help them more. -- Adam Baer
"What are you talking to me for?" asked Mel Brooks. "You need to talk to more Jews. Younger JEWS. Call Paul Mazursky."
Brooks was speaking to me for a Rolling Stone magazine piece about funny studio-executive notes. I'd heard of Mazursky's name, knew some of his movies, but had not connected that identity to the guy who had acted in recent episodes of Curb Your Enthusiasm, the character "Larry David" would eventually kill via stress.
Mazursky had directed various important films about romantic relationships, had shared my New York background. I didn't know if the magazine would use his quotes, but I'd thought they'd appreciate me trying to get some good stories from someone who had been around some amazing sets.
I went to Mazurksy's Beverly Drive office, told him that Mel Brooks had sent me.
"What does he want?" Mazursky asked. "Oh, right. You're the kid."
"I'm the kid," I said. I was in my late twenties.
Next, Mazursky asked me about my background. He wanted to know everything. He'd said that he'd read something about me, something about cancer that his assistant had showed him. He told me very funny stories about the author Isaac Singer. Oh, and did I have cancer?
I said that it was hard to answer that question: Does anyone who has been diagnosed with cancer ever stop having it?
"My daughter," he said. "My daughter--"
Silence. Then tears.
Mazursky broke down in front of me. He bawled. His daughter also had a tumor, he'd said. She'd just been flown to a top hospital near us. He didn't know what to do. He was looking into "the guy who worked on Ted Kennedy at Duke."
Did I have suggestions, connections? What could they do?
The phone rang. Mazursky answered, gestured at me to stay.
"Yes, OK, that's the guy," he said on the phone. Then to me: It's Jeff Berg, you know him?"
Mazursky was speaking with one of Hollywood's most powerful talent agents who had been helping him make contact with a specific surgeon. He kept me in the office while he spoke with him. Then we talked some more.
I gave him the best contacts that I had, including one top neurosurgeon at Cedars-Sinai who had graced the cover of Time magazine.
He asked me to stay. "Let's talk," he said. "I'm sorry--"
"Don't worry," I said.
Then I sat in Paul Mazursky's office for an hour while he asked me more about my various medical problems related to surviving multiple cancers, the people I knew, the doctors, the therapies. He was suffering.
Eventually, he got a call from the hospital doctor that the agent had recommended. He answered the phone but asked the guy to hold before thanking me, saying that I should come see him again.
"I have so much to tell you about my career," he said.
I have this entire experience taped on one of my many old Olympus voice recorders that doesn't work with my Mac.
I shook Paul's hand, thanked him, reassured him that his daughter would be OK (as if I could know).
Then I went home and watched three Mazursky movies in the next couple of days.
I would not write about this experience until now, the day that I learned of Mazursky's death. His daughter had, in fact, died sometime after our meeting. But I am thankful that I got a chance to spend time with Paul, perhaps lend a hand in the moment, an ear, whatever.
I should have called him back to check on him and his family, but I kept putting it off. He had help, I told myself.
I don't put things like that off now.
I appreciate how LinkedIn asks you to "congratulate" a connection on his/her birthday. One's best accomplishment is, to be sure, Not Having Died Yet.
For more comments about managing to stay alive, check out my new advice column at The Awl: "Ask Somehow Still-Alive Guy."
Thanks, and live strongly skeptical about people who tell you to Live Strong,
Posted on August 04, 2013 at 01:09 PM | Permalink
This weekend, The Financial Times Magazine runs a hopefully informative and humorous personal essay [PDF] about my mysterious health travails and experience with LA's medical marijuana world at an crucial point in the battle to legalize cannabis in California. It's also online in web-friendly html page-format here, @ FT.com.
Naturally, I thought long and hard about what kinds of supplementary material I could offer on my blog. But we sadly only present words and stuff we can roll and/or bake into Web code Glass Shallot. In that spirit, then let me offer a small chunk of text my editors and I had to cut at the last minute for page-space. It concerns the first dispensary I visited in Hollywood, one of the shops LA will close, where the system -- and the product -- actually worked very well. (Text below)
"More concerned with convenience than finding a boutique shop that sold Valrohna chocolate cupcakes, I first visited Druggie Christmas Tree Girl’s dispensary: a dank space above a seedy Hollywood motel, manned by a hulking Middle Eastern guy with a shaved head, wearing an elegantly dizzying Ed Hardy T-shirt. He screamed my name the way some thug had screamed at Jason Statham in an action movie I once reviewed. Naturally, I trusted him.
“What iz dis?” the guy asked, taking my letter through a little hole in the wall that separated the real store from the waiting room.
“It’s my doctor’s recommendation," I said.
“I never see something like dis, yo.”
“Well,” I said, “It’s real.”
“I see dat, dude. But I still gotta call.”
Yes, this sketchy drug-dealer type was calling a nationally lauded physician because of me.
He left the window, I heard some mumbling. He reappeared minutes later.
“You in,” he said. “He OK it.”
“You spoke with my actual doctor, not some nurse or assistant?” I asked.
“Totally,” he said. “Now whaddayou want?”
I walked into a tiny, smoky space through a cage-protected door, and he showed me some 10 canisters of fragrant weed. I asked for something to alleviate pain – nerve pain, if that meant anything?
“Bubba Skunk,” he said. “That’s you shit.”
“That’s my shit,” I concurred, handing over $50 for a pill bottle filled with buds.
“How much should I use?” I asked.
“Howev much you want, homeslice.”
Then I left, and as I waved my new drugs around the seedy eastern side of Hollywood Boulevard, as a man in a doo-rag drove by me on a miniature bicycle powered by a tiny motor, my wife grabbed the bag and told me to hide it.
“But it’s legal,” I said.
“But this isn’t Brentwood!"
Technorati Tags: 4/20, 420, adam baer, bubba skunk, buds, california, cannabis, dispensary, edibles, farmacy, financial times, ft weekend magazine, hash, indica, james franco, los angeles, marijuana, medical marijuana, pot, prop 215, sativa, strain, tax cannabis, weed, weeds
I am having a lovely time in Rome. But I can't help but feel that the trip is somewhat marred so far by a persistent cold, sore throat, and fever-like sensation that worsens at night. Until yesterday we thought I just picked up something nasty on the plane. But as it continued to worsen over a week's time, I figured it would be wise to get it checked out. First I went to a farmacia, where things are a little different than they are in America. For one thing, as my local farmacia dottore pointed out, in America, you never get to to speak to the pharmacist: That isn't entirely true, but I know what he means having spent lots of time in inpersonal Rite Aids run by uneducated fools. But then the farmacia dottore continued: Here, we are doctors, he said. And there are four of us all the time in this place. Of course, they only have one form of sudafed that doesn't make you drowsy (Vicks -ah"FLu-ah Action-ah"), and they decide what it is you need, but it is nice to speak to someone who knows a little something about medicine. You like-a this system better than America's, he asked, ah? No, I said. They are both good, but I wish I had the choice over my medication. Ah, he said. But we are doctors. Lina then perked up: But you are doctors of phramacy the same way I am a doctor of psychology, just like our pharmacists. Yes! he said. Clearly we weren't communicating very well. At any rate, I then ran into my Zia on the street looking for peaches at the fruit stand. It so happened she had just returned from her doctor. What type of doctor is he if you don't mind me asking, I said in Italian. Allora, she said. Ancora, sentai male? Si, I replied. Allora. She took my hand and we walked one block from the apartment where she rung up her local doctor's office. We entered and the doctor took me right away, checked my throat and gave me a full exam. I see no sign of bacterial infection, she said; drink water and lemon. And don't let water come from your body (sweat!). Then she OK'ed the phamacist's Sudafed and the new throat spray. Then, when it was time to pay, she refused money. Instead she kissed the both of us, tolf my aunt to feel well and tousled my hair. Then she sent us home and told us to bring her lemons from Amalfi. Now, think of even the nicest doctor in the U.S. Would he or she see you for free, and instantly? Would he or she care enough to put you ahead of her other patients? That is what I miss about the American system. I don't care if I have to pay for my Sudafed (my Zia will get reimbursed by her government-fortified insurance company for my over-the-counter cold meds). But it would be nice if I had a doctor who cared even 30% as much as this fine Roman doctor. Oh, and by the way: She went to Harvard but she grew up in Rome. Va bene, indeed.
Posted on May 26, 2008 at 11:29 PM | Permalink