Glass Shallot by Adam Baer

RECOUP Ep. 4: Taking Up Space Together

So, I've been doing a podcast with the writer Eva Hagberg called Recoup that has earned some attention from the LA Times. In this episode, however, I speak with my spouse, who is a clinical psychologist and neuropsychologist. But the episode is really funny. It's not a pandemic / coronavirus episode, and I urge you to check it out. Thanks for all the positive attention and five star reviews on Apple. We're getting so many listeners from all over the world, and as terrifying and sad as this pandemic period has been it has offered me, as a homebound lifer of cancers and rare diseases, a lot of light and hope. If you don't want to head over to your podcast app of choice you can listen to this episode below with an embedded player. Thank you again, and please share. It's word of mouth that's really helped us so far, and we want to keep doing this to help people. You can always write in to us with your questions or concerns about uncertainty, chronic recuperation, disability, social isolation, and everything in between at [email protected].  -- Adam Baer

The Pressure to Say You're OK on the Stupid Cancer Show

 The Stupid Cancer Show had me on for a second time last night, and it was a roiling good time. The entire show's funny and informative, and my segment at about 24:30 takes us through an op-ed I wrote for the Los Angeles Times called The Pressure to Say You're OK. We also discuss asking the hard questions as cancer survivors--which include money questions and billing practices for a chance at financial transparency--as well as how recently the hospital associated with my alma mater (Johns Hopkins) decided I owed them thousands of dollars without me ever having seen a doctor there! Crazy but true, and the hunt for money to pay for this imaginary medical work only took a year to quash. Listen to the show right here.--Adam Baer

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Here's something charitable you can do before 2016 that will cost you nothing. Accept and defend “health diversity.” -- Adam Baer, The Los Angeles Times

Are Riptides and Currents as Dangerous as We Think?

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.

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Beyond the Boundary Principle, A New York Times "Couch" Essay -- by Adam Baer

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.

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My Rare Disease, and the One Guy Who Might Erase It -- by Adam Baer

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 am lucky to have great health insurance. 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.

Of course, we're living at a time when a researcher might figure out an ever-better treatment. But 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 over the years, 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, and that you may decide to allocate some of your disposable income and time to help them, too. -- Adam Baer

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The Day Paul Mazursky Changed My Life (RIP)

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The Day Paul Mazursky Changed My Life (RIP)

"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? 

He laughed.

"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.

RIP, Paul Mazursky.

 

                    -- Adam Baer, @glassshallot

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LinkedIn Congratulations

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,

Adam Baer

 

LA Psychologist Lina D'Orazio on "Tele-therapy" Atlantic Article

LA psychologist Lina D'Orazio (@ladolcelina) in response to the tele-therapy piece on the @Atlantic online. She writes: "While I appreciate the increased access to affordable mental healthcare, I'm not sure it should come at the expense of security (Skype and Gchat are not secure, which puts confidentiality at risk) and quality of care. I know licenses don't guarantee quality care, but they do guarantee protection when things go wrong. I have a feeling that this hasn't happened to this "Angry Therapist"...yet. Perhaps a solution to this could be a special license for telehealth that is recognized nationally." 

"Speak, Malady" in Harper's; "Speak, Memory" Still Rightfully Everywhere

My recent Harper's essay, "Speak Malady," in which I rock, roast, and melt at medical tourism meccas Boston, M.A., and Rochester, M.N. [PDF link] --Adam Baer

 

Medical Marijuana in LA: "Hit and Miss" in the Financial Times Magazine (FT Weekend)

 

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!"

--Adam Baer

il dottore a roma

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 impersonal 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.

huffpo'ing immigrant health reform

And the fight rages on:

http://www.huffingtonpost.com/adam-baer/keep-kids-covered----espe_b_99213.html

the springtime harvest: food stories

Recently, a 40-year-old friend e-mailed me a thanks for telling him what he should be eating at his ripe old age. About nine years younger than him, I couldn't claim to be a true expert and had a good laugh at his note. But the other cool thing about some of the facts I uncovered in reporting this recent Best Life food-for-health story is that you don't have to be a man to get benefits from these ingredients. Have a look at the piece, featuring actual experts (including a look at celebrity nutritionist culture), and if you see me at the local French bakery, I give you permission to smack me in the gut.

p.s. I also admit that I did send into the universe this cocktail story for Angeleno as well as this artisanal hot dog roundup for Lexus's newly retooled lifestyle and culture magazine--but hey, one of the dogs is made from organic, grass-fed beef, and let's not forget about the medicinal uses of ginger, which appear in one of Katsuya Hollywood's most transporting sips.

keeping coverage--no matter how you got here

Yesterday's article in the LA Times about young immigrant liver-transplant survivors who hit 21 and lose state coverage, often causing a lapse in their post-transplant care without chances for re-transplantation, raises issues so important, it should spark questions in a forthcoming presidential debate. Not only does it shine a light on whether or not young, illegal immigrants should receive taxpayer-supported medical treatment; it is powerful enough to illuminate a candidate's sheer humanity, regardless of his or her opinion on immigration reform.

In reporter Anna Gorman's story, a young woman circumvented near-certain death and won her way back to state-supported care at UCLA, which could offer her another transplant if necessary as opposed to care provided by the county. Her strategy? Admitting that she lives in this nation illegally. Bold.

Now, I am not in support of every immigrant having to take such a leap in our current immigration-reform environment; but that isn't the issue. When terminal or chronic and progressive illnesses strike, certain compromises need to be made.

And surprise: For as many citizens who don't want an illegal immigrant on a liver-transplant waiting list in a country where supplies are low and costs are high, there are humanitarians in medicine and the field of medical ethics who believe that a hospital should not drop a pediatric immigrant transplant case--or any other type of chronic case--just because the patient has reached legal drinking age.

It is a terribly imperfect system, to be sure. But I don't just feel for these patients as a chronic disease sufferer who received a transplant during the pediatric period of my life. I see and hear about what these patients deal with firsthand as the husband of a cross-cultural health-psychology researcher who, among other things, assesses quality of life and depression in monolingual immigrant patients with similar circumstances.

The facts: These patients are under tremendous stress outside of their medical predicaments--as if they need anything else to worry about. Other cultures also sometimes view chronic illness differently than Americans—it's not just "bad luck" or something that can be "fixed." Some patients from other countires, for instance, may consider one disease a curse or punishment. Some may never tell family members. Some may not seek treatment consistently enough without strong reminders. These factors need to be considered when rendering a decision about medical care for non-citizens.

In fact, it's even harder to be a sick young adult as an illegal resident, and I say that knowing how terribly difficult it is to weather multiple conditions of this severity as an American citizen. When these 21-year-old immigrants received livers as children under state-supported insurance plans, they didn't ask for American care. They didn't ask to be here at all, most likely. We cannot hold them responsible for a choice they didn't make, and to ignore them on this count would show some of the lowest regard for human life I can imagine. While these patients may not pay the same taxes as other American residents, notifying the government of their status is not as simple as it sounds. It is a brave and risky measure. One with potentially harsh repercussions for their families that should be rewarded with at least the same care that would be given to any other American child.

For the record, oncologists consider patients "pediatric" up to and sometimes beyond 20 years of age. But the public has caught on to this labeling due to powerful cancer survivorship networks like that of Lance Armstrong's (love him or hate him). Liver disease and other ailments that strike patients up to this age, and perhaps beyond, should also be considered pediatric. And pediatric patients--for starters, at least—should have a reliable medical support system in this country regardless of how or when they arrived on these shores. As Dr. Michael Shapiro, the vice chairman of the ethics committee for the liver network, said in Gorman's LA Times piece: there's probably a better chance that more illegal immigrants donate organs in America than those who receive them.

So let's pose the question to all candidates, regardless of political party. The results could tell us not who is ultra-conservative or ultra-liberal but who really values human life. They could give us a true sense of a candidate's character. And wouldn't that be a little more interesting than getting nitpicky about whose national health plan will do exactly what before it's even put into place.

 

docs with a (literary) dream

In today's Huffington Post, I have a piece on some issues a well-known doctor missed in his recent national newspaper essay. It discusses the trend of doctors writing books and articles about the behind-the-scenes medical world. But I just wanted to expand here on one small point in the piece: a) Of course, I agree that anyone with a specialty problem should see a specialist (I wasn't advocating that someone with hormonal imbalances shouldn't see an endocrinologist), and b) I know plenty of docs, super-specialists included, who are to be lauded for their work as scientists and humanitarians. Still, this piece had to be written. Could it have been more concise? Sure, but then I wouldn't have done the blog op-ed justice, right?

Obama's Concern for Chronics

[Cross-published at The Huffington Post]

NOTE: See addendum below this piece to as a response to HuffPo commenters.

IN A RECENT New York Times piece, Paul Krugman, one of my favorite columnists, explains how the numbers can't deny that Hillary's health plan is better than Obama's. But what "better" means here is relative even when stats and dollars are an issue. The idea is that Hillary's plan calls for a mandate and will result in more coverage dollars per person. You can't argue the logic of strong economic research. But what excites me about Obama is his less-than-bright-lining look at things. He's got a realistic hold on the healthcare crisis even if his plan is less likely to insure everyone immediately.

More powerful, he's also clearly interested in eliminating waste that contributes to hard-to-explain hardships for sick people. And from the standpoint of someone somewhat young with chronic health problems in the wake of serious cancer, it was damn-near J.F.K.-inspiring to hear him discuss healthcare in the past by leading with talks about insured Americans who had survived cancer but now face secondary problems and an endless onslaught of salary-zapping bills.

To be sure, getting everyone insured is of paramount importance. But so is realistically looking at how one can make that happen over a span of time so that it happens correctly in the nuanced way that it should. Does Obama have specific ideas for how to stop hospital and doctor billing fraud? For how to get cancer survivors better quality of life as they age and new bizarre conditions come their ways because of the toxic chemicals and treatments they were forced to endure to be able to vote in this election? I haven't exactly heard them. But if there's one thing that keeps people going after they've been very sick and now have uncertain futures, it's hope. And Obama gives me, a survivor of an autologous stem-cell transplant for pediatric lymphoma, hope.

Hillary? I just wouldn't trust her looking out for me at the infusion center if there was another chance for her to win some more powerful support from someone across the street. I wouldn't look to her for thoughtful looks at the small problems facing patients double-billed by hospitals, giant corporations, in fact, who often charge $150 facility (or in some cases, emergency room) fees in addition to outrageous doctor fees just because a physician chooses to practice inside a hospital-owned professional building a few blocks from the actual hospital building--what I call the branding-inspired Mayo Clinic model.

What's become evident, however, is that the sufferers and survivors of chronic diseases in America should band together to endorse a candidate based on the specific issues of getting and keeping not-just-OK-but-excellent insurance after a war has been waged against our bodies. Medicare, for instance, recently stopped paying out for some instances of immune deficiency treatments like intravenous immunoglobulins (which is also used to treat auto-immune diseases affecting the nerves, muscles, and joints, to say nothing of its promise for Alzheimer's and other conditions). Someone needs to ask the candidates about this.

Universal health care is vital. But if some of us devoted to it aren't alive—or well enough—to fight for it as the years pass, voting for someone's broad promise of more coverage dollars for everyone when they may not really care about the details for those sick people lucky enough to already have insurance isn't going to help. If there's one thing sick people know, it's that there are a hundred questions to be answered and solved after deciding on a treatment plan.

There's a way to live more healthfully on the left side with insurance – and that doesn't mean just swallowing our severe insurance and medical care issues because the rest of the country isn't insured. Let's look at the problem in a complex, multi-angled manner, and not jump to the flashiest, sexiest solution just yet.

When flight attendants tell you to make sure your air mask is secured before you help others with theirs in the event of an emergency, it's about not being self-interested or conservative. It's about being smart. And while Obama's thoughts about healthcare may seem like an immediately smaller and less comprehensive band-aid for the country's uninsured, they may also be the most realistic and nuanced on the ticket because they come from someone who sees that this problem is a lot larger and more intricate than it seems.

---

Response to HuffPo commenters:

Don't teach me about the value of hope vs. the value of insurance. I know it all too well. But I also know it matters who's holding the cards. And it's never you as the patient. So in this case hope matters. Because I simply wouldn't trust Hillary holding the cards that concern my medical treatments--what's allowed, what procedures, what payouts, when. Obama has shown concern not just for universal health coverage but for a growing population in America: the chronically ill, the survivors who now face mysterious secondary conditions (and secondary can mean 5 or 6 or 12 of them). So to anyone who doesn't understand the above piece, let me say it clearly: More coverage dollars and an immediate quick-fix mandate doesn't mean jack if it means that the person in control won't necessarily grasp or care about the nuances involved in high-level medical treatments once plans are put into place. Obama has shown the most important quality here: human concern. My biggest nightmare is waking up to find Hillary with her hands around some patient's IV, discussing the economic worth and political value of his or her treatment with an insurance company.

Mayo Dispatch 10: Medical Tourism and Bad Eats

[Note: Please scroll down to Mayo Dispatch 1, and then scroll up for each new dispatch, if you're interested in reading this account of my time a the Mayo Clinic in a chronological way. Otherwise it will just run in retrograde. Herewith, dispatch 10. ]

I have to prepare a last Mayo Dispatch, as I'll be kicked out of my Hilton in less than an hour, forced to roam Rochester's tunnels and skyways until the last shuttle of the day(!) can get me to my plane four hours early. Yes, there's no shuttle to the airport here after 4:15 p.m. on Saturdays. I don't get it either. But one of the nice things about being stuck in the tunnels--or rather one of the decent things I found do to in the tunnels--was traipse about a bookstore the way I once did as a young New Yorker. There's a large one adjacent to one of these tunnels, and I've spent time there, inside its "cafe," drinking subpar mochas while I page through 10 mags  and a few new notable books in each sitting--an activity that once made me want to be a writer and eventually led to me meeting my wife. Still, I haven't really done this since moving to Los Angeles--maybe it's the fact that you have to drive everywhere there. In New York, you just often have to kill time on foot--so where do you go? Bookstores and coffee shops. At any rate, it was at the Rochester superbookshop where I noticed a great and large "official" tome celebrating the Sopranos, written by Brett Martin with the cooperation of the cast and producers. Martin, a writer whose works have appeared in some of the same mags as mine (although let it be said, that he has truly outdone the author of this here Shallot with a hilarious and moving output of articles and essays for GQ, among others for This American Life, Vanity Fair, and beyond), seems to have won (hell, earned) the ultimate score here for Sopranos fans, of which I consider myself one. The book is extremely entertaining and does feature some information that has escaped even some of the show's scholars, but I also must admit that I had so much time to kill in the bookstore, that I read the whole thing. The point of all this? That sometimes you need a little distraction, and if your favorite TV show of all time is over, you didn't bring your DVDs, and you're stuck in a bookstore, well, by all means look for the official book celebrating your favorite show and see if it isn't great. Martin's book, for its part, deserves to be purchased wildly as a holiday gift, not just read in a store by word-mooching latte drinkers, so maybe get this one for your brother, dad, mob-crazed sister, or cousin--and certainly get it for anyone needing to dissolve from scary real life into pop culture references and diversions. It's fun to read about how Robert Iler basically got his role as A.J. just by repeating "What? No fucking ziti now?" 30 times in a tiny room on 72nd Street. But Martin has also elevated his book's genre with spot-on cultural criticism and articulate (but fun to read!) spotlights on issues in the show you may have never explored. Kudos.

How has the Mayo portion of my life ended? Well, last night we attempted to give Rochester's one tapas restaurant a try, and ended up with some seriously mediocre and overpriced food, one example of which had to be sent back. (I hate doing this, but honestly the food tasted like dirt, and I cook with sihtake mushrooms all the time, so I love the flavor that was supposed to permeate this risotto.) But Rochester being what it is--you mean my expensive plate of crap isn't great simply for being expensive?--the chef then sent the waitress back to tell us that he thinks the food tastes great and that we're wrong, but that he'll gladly do us the favor of removing the plate from our tab. How kind, I thought. After we just spent $12 on individual drinks (in Rochester!) with perhaps a quarter of an ounce of alcohol and endured your terrible pizza--excuse me, "Neopolitan pie"--as well as picked lemon aside one tiny piece of chicken that tasted like Ajax. One thing that appears certain about downtown Rochester is that while it remains podunk, some uppity entrepreneurs are attempting to upscalify the place and rob monied or simple less podunk Mayo travelers while flauting faux-sophistication. 

Have you ever heard of medical tourism? As medical charges increase in the U.S. and people don't necessarily want their procedures done at the nearest facility, it appears that a large group of travelers are hitting new cities and even leaving the country to receive medical treatment. And when these people aren't being cracked open like lobsters, sometimes they want to eat some. It seems like Rochester may be on the verge of turning into a medical tourism hotspot--it already has the built-in traveler base. But as it does, Mayo patients and even those traveling here for business need to be careful. Eating at one of these faux-gourmet restaurants is sort of like asking for psychotherapy from a schizo locked in an asylum. Other restaurants in town have been similarly Emeril-ized, but they aren't as offensive in their attempts to swindle. They either serve over-complicated food or bad attempts at the classics. This is much more acceptable to me. Nonetheless, read your Chowhound, and then still open your mouth with caution.

Mayo Dispatches likely to end now, though I may return with more info and commentary. But I have some nice newspaper articles to run on the west coast tomorrow, and I'd love to get back to some of the day-to-day. Keep your eyes open, however, for a large piece about this experience. It's definitely going to be a part of a forthcoming book as well as a script being developed with a partner right this very second. And yes, we can do this, even during the strike. (Thanks to all of you for writing, too.)

And now I walk out of hell and into the urban. Well, I fly, and it will take more than half a day to get there, but you get the drift. --Alexander Superpatient, Dec. 15, 2007 

Mayo Dispatch 9: Clinically Photogenic

Enlarge the above picture to learn about how Mayo has "one of the oldest and largest programs of medical photography in the world." Next draft pic? Mario Testino. Tell me you can't see it: "America's Next Top Model," Mayo Clinic Edition.

As Charles Mayo would have it (click on and enlarge the above pic to read his thoughts on how to tech people to stay well), this young man looks beautifully preserved.

"A surgical procedure should be planned so that the patient, with the least possible risk and loss of time, will receive the greatest possible benefit." Charles Mayo offered these words, seen in this exhibit of surgical tools, on display for anyone en route through the main building's subway level walkway. Did he have thoughts in 1930 on whether or not people would ever want to see the tools--even the historic versions of what we now employ--used to open up their body cavities for life-threatening procedures? America needs to know.

In the aforementioned subway level mall that takes many people to their hotels or healthy fast food establishments (we all eat the lowest cal sandwich at Subway, right?), there's an actual store run by the Mayo Clinic for sufferers of sleep apnea. This is both extremely useful and extremely hilarious.  'No more sleepless nights' is not what I think of when I see that Darth Vadaresque mask in the bottom right corner. But if it will stop the snoring that keeps Lina painfully watching Carson Daly as I sleep with the remote tucked under a leg or head or something else, I say, let's get into the holiday spirit and patronize the joint

Mayo Dispatch 8: The Penultimate

We were comfortably shocked with our final MMD meeting yesterday. He was a lot more openminded and seemingly more concerned than we had anticipated--understandable given our experience, but it craved noting. And, drumroll!, he also provided what might be an answer to the problem--but it is, to be fair, the easiest of answers and may not have popped up until now due to time as opposed to proprietary Mayo technology or insight.  If it's not the answer, we're only a little further beyond square one and must move on. We'll move on anyway, leaving Rochester tomorrow at last for the Big Pomegranate I still call home. But it should be chronicled that if I hadn't asked yesterday's skin-sensation technician to test the right foot instead of the left, where I have permanent nerve damage from ankle surgery, she would have followed her orders to test the left, even though this information had been conveyed to MMD on Day One.

MMD also asked me if there were any other tests that I felt needed to be done. I appreciated the question--a doc who respects his patient's education about his own condition?--but I also didn't really feel that a doc should be asking a patient this sort of question and wondered if it wasn't just patronizing ego-candy. We want to believe in you, MMD--just do everything if you doubt yourself. Nonetheless, the man may have come through (or rather, my system may have made things more obvious, finally), and we'll find out more through the mail in the coming weeks.

So: Don't think you always come to Mayo for one (extended) visit and return with a cure, or even an end to your medical journey. That's sort of a misconception, and it should be known more widely that this place is much more like a major city university hospital than it is some super-unusual rare disease "let's get everything figured out immediately" kind of place. That said, some of its tests have been unusual and helpful, and it does figure out mysteries in one-week periods for others, I'm told. That's just not the majority. Too many people have told me that they return here frequently--not for treatment but for more chances to discover the culprit.

Another interesting Mayo fact: the docs don't trust pathology from outside labs. They believe their techs and docs do everything best. Which may be true but seems impossible in all regards on every day of the week. So they often hold onto biopsies from you longer than other places, and they also want to redo much of the testing themselves and then take their answers over anything else. It's less-than-curious in that creepy George W. Bush kind of way, and I worry about that sort of over-confidence and narrow-mindedness in every respect. But yes, they are good here. Retractions aren't necessary. But contractions of criticism about this place are. It's both less special and unusual than it wants to be, but it's also a fine, praise-worthy medical center. Let's just stop referring to it with religious devotion. In my case, it is helping me move in the right direction; it's not putting a stop to the trip.

Funny Rochester fact: We can't seem to find any movies to see here that don't have something to do with Christmas or fantasy or disease except for "I'm Not There," which we've seen.  I said to Lina: "That's an awfully artsy movie to be playing in a town obsessed with Fred Claus, I Am Legend, and the Chipmunks" (Could we combine both movies and pit Will Smith together with his cheeky friend Tom Cruise Hubbard?) But then I remembered where Bob Dylan grew up: Minnesota. It's also the place he eventually escaped, though. Thank J.C.--and Alvin--for that.

P.S. Some more fun facts about Rochester:

1. "Fine dining" establishments--and I use that term loosely--are open at 4:30 p.m. for dinner! Who's racing me to the early bird special? You don't ever need reservations here.

2. Hotel housekeeping employees *will* knock on your door at 8 a.m. if you don't have your Do Not Disturb door-hanger in full view on the outside of your temporary home.

3. The one store in the mall that sells mod home accessories--think Eames chairs and Alessi kitchen accessories--serves free chocolate toffee straight from a kitchen in Minneapolis! (That's how bad they need business...)

4. If I had gone to grad school in Minnesota--their MFA in creative writing dept once offered this here syntactically challenged blogger a fellowship that would have included having me teach a class on Hemingway--I might have had to come here pretty often for checkups.

5. Every time you have an test at the Mayo Clinic, the tech who comes to get you from the waiting room asks you to repeat your name and birthdate. I have tried variations on Alexander Supertramp just to see if I might get a smile or a scowl. I usually just get a  straight-faced: "Whatcha say?"

6. Lots of older folk here use the term "You bet" to say "anytime" or "you're welcome." Where does this habit come from? Was Minnesota a gambling hotspot at one time? Tell us in your next convoluted series, David Milch!

Mayo Dispatch 7: Digital Nature Interlude

There's probably nothing better for your spirit when you're foxholed up in a medical society--and this *is one contained medical community; everyone here has something to do with Mayo--than to escape it as thoroughly as you can. That proved physically impossible for us over the past few days. But thankfully we arrived with an academy screener of Sean Penn's "Into the Wild." I don't know that the movie was the best I've seen. But I do think Penn outdid himself in terms of visual and visceral scope. The film transports you (and in my case, reminds me why I've avoided a fulltime corporate job since the year following my undergraduate degree). I also don't believe like others that the flick necessarily glorified its protagonist: it showed him in frequent states of potheaded smuchkification for all his innate intelligence, ascetism, and Emory degree. Some people are just goofballs, and the film seemed to be honest about that. That Supertramp died so closely to supplies, a highway, and help seems only to enforce that notion. Maybe Penn could have made that more explicit about those facts. And maybe there could have been less original Vedder in the soundtrack. But locking up in a dark hotel room with a laptop DVD viewing session of this film after spending a day grappling with the unique blend of Mayo invasiveness and impersonality really brought Lina and I back home. L.A. may have the worst air in the country but it provides a lot more access to nature than Hell's Kitchen. After the flick, I put myself to bed re-reading Krakauer's Outside article, and thought yet again: This man is an extremely clear writer, but I don't know what his prose legacy will be. Which is not to say that every writer needs to be a great stylist. I love my plain sentences, my purist storytellers, my adventurers who return with tales that defy linguistic elan. But it seems to me that Krakauer's greatest feats have been finding (or living) content and packaging material with his pen. No pun intended. Still, "Into the Wild," the film, was about the best thing I could have watched last night, and Penn deserves some serious recognition for his work. Perhaps Krakauer or the new gen of Krak-type writers should look into the young pioneers who venture into the depths of the elite medical world as patients; these extended trips and transfixing diagnosis procedures should be viewed as intensely as wilderness. There are certainly more ways out of Denali--if you're smart.

Mayo Dispatch 6: Purple Haze & One Inspirin' Gift Shop!

Earlier today, I recorded a little podcast (still in digital form thanks to voice-recorder software that’s failing to work with my Vaio) as Lina and I traversed the built-in skyways and "subways" (sans any actual train system) that link many Rochester buildings with different Mayo towers--so you can grab a Subway sandwich on your way to a shoe shine and lame doo-dad shop before getting stuck with needles or donating your kidney to science. Despite those virtues, however, it's a bizarre and poorly designed infastructure crippled (pardon the term) with counter-intuitive turns and connections. In fact, it's easier to walk outside to many places, including our "connected" hotel. But it's Minnesota, and there's snow on the ground. So if you’re in a wheelchair, like so many people here, it’s best to roll in comfort. On the other hand, many of the walkways are super-warm, and if you’re not in a wheelchair but also have some trouble doing a lot of walking (it can be miles to get back to your room through the indoor hallways), the “subways” only cause you more distress.

A funny tidbit about our podcast: We recorded it on the device we used to record the consult we had with one of Mayo’s top surgical minds. He really was the most impressive person we had met here. He offered to go beyond his assessment (that issues on the surgical side of my condition are stable) and “shop around” his thoughts to other surgeons and radiologists, concluding with a letter he’d send to both my home and temporary holiday-season address in New York. It might have been illegal to record this conversation, and I know this. I haven’t looked into Minnesota convo-recording laws yet. (I know it’s illegal in Cali but not in New York, for instance.) Still, it’s good to have a record of exactly what docs tell you. And if they’re not admissible in court later down the road (I’m more than half-kidding), so be it. Conversation tapes don’t always have to be legally made to inspire doubt on the part of lawyers and judges. Sometimes tapes lead to cause for investigation! In this case, it was just nice to know we have our surgeon’s thoughts on record.

We’ll perhaps use the recorder, tomorrow, with more ambition. We meet with MMD (my [primary] Mayo Doc) after his series of tests to learn his concluding thoughts. He moved up our appointment from Friday to Thursday even after I left him a note at his giant departmental desk explaining that we hope he received our biopsy slides from NYC (finally confirmed minutes ago), and that we hope he consulted with specialists who could be helpful in this mystery diagnosis procedure—in our case a neuro-immunologist and/or stem-cell-transplant-experienced oncologist who has seen patients with my history as well as some other specialists. Our response to this note? We received a newly printed itinerary of medical appointments from a secretary at the surgeon’s office an hour later. In other words, there was no personal communication. We just got a sheet saying that we now have appointments with specialists in the aforementioned departments next week and in January. Meaning, MMD expects us to stay in Rochester, M.N. for one week, doing nothing, to see the first doc, and then return in January to see the other before seeing him again.

Hell no to this, we say! MMD had his chance to be comprehensive and unusually helpful on Day One. We came to him for the Mayo approach of piecing together something complicated. He took his time, wasted ours, and didn’t think big or involve his colleagues in other departments, thereby breaking the unwritten but widely believed promise that Mayo does things differently than other hospitals. As I explained to Lina, it’s not that Mayo is renowned for always gathering a group of famous minds around a table to discuss your case from every perspective; it’s that they’re famous for the corporate, branding-specific concept of “group practice”: putting top specialists in one center together so you can be referred around in one medical center, thinking you’re getting the best of everything (often the case, but debatable) before a final decision on your case is rendered (also often debatable).

In the instance of the aforementioned baby with possible cystic fibrosis, the system seems to have worked: the parents arrived, thinking their kid had stomach problems, and were soon sent to a pulmonary doc who moved things in different directions for them. Neurologists—particularly the sort who don’t deal with the brain but with the nerves in the limbs, say—don’t seem to be as insightful and broad-thinking, even though their disorders often involve the complicated immune system. In my experience, the majority of them are technicians: they check your reflexes, prick you with pins, gauge your muscle potentials with needles, and then shock you with electricity before reporting the results. We came here for more: To meet a doc or team of docs who can do all this stuff with expertise in other fields of medicine and more systemic strategies. Let’s see if we get such results; after today’s events, we’re not optimistic.

Lina says that if MMD asks her tomorrow why a wire is sticking out of her sleeve (the wire from our voice recorder), she’ll say it’s connected to the battery that runs her wee, little heart. When she first said that, we laughed sarcastically. HAHAHA. Now that it’s been more than an hour since the comment, the thought seems to hang in the air like a matzoh ball. There's more gravity and truth in the mix.

Some comedy!

Because now that MMD has changed my last appointment with him, we do have a free 36 hours in Rochester. “It could be fun staying here,” said Lina. “We could go to the mall and holiday-shop!” We call this the D’Orazio optimism, but even Lina couldn’t convince herself and started laughing at her suggestion. Still, I don’t think she was kidding 100%, and I’d much rather see this quality in my partner than the “survivor realism” coloring my consciousness—a worldview most people would probably just call "depressing negativity tinged with black humor" despite my attempts to explain that I refuse to artificially “think positive” when I don’t have data supporting the future arrival of positive news. Is there something actually wrong with just not thinking or taking things as they come as opposed to “thinking positive?” I think I can still be buddies with Lance Armstrong and the Us Weeklyish live-strong camp while maintaining a little internal relativism and not trusting that everything is gonna be OK (unlike other patients here, J.C.--to say nothing of "Adonai"--and I never got along, believe it or not).

Perhaps I should have bought myself some prayers (yes, they're for sale!) in the Mayo Clinic gift shop (seen above), outside of which Mennonite volunteers direct people into elevators or explain where the history of Mayo exhibits lie deeper in the Rochester “subways.” I’d prefer reading Steve Martin’s newest book, in which he breaks down the germination of his absurdist comedy. This is a guy who knows something about how the world works. (It doesn't.)

Lastly, inspired by a Conan O’Brien rerun I watched on my laptop, here’s a medical SAT-style analogy:

(Most) neurosurgeons are to (most) Peripheral Nerve Neurologists as Confidence is to what? The answer: Lawsuit-worried, non-committal wishy-washiness found in people who watch their own asses before doing anything else. Seriously: Our surgeon today was oh-so-cool. He actually seemed to believe in what he was saying, cementing the notion that it's guys like these who should be consulted on all matters--even if they're wrong. Perhaps we should have asked him where to eat dinner--at least he would have said something with conviction. Last night, we had some "authentic" Chinese noodles that make 99-cent ramen taste five-star. But if he had told us they were good as we desserted on one shared Twix, we would have given him a badass high-five.

More as it comes…

P.S. We’re currently in a Hilton, and there’s a copy of Conrad H.'s “Be My Guest” in the bureau drawer (such pride on which to draw--huh, Paris?).  I’ve never seen a copy of this book even though I’ve stayed in Hiltons, so I find it sorta fun. Looks way more pleasant to read than more Mayo brochures—on everything from local activities (support groups, Dutch restaurants, yoga) to self-prep for various diagnostic tests. (My favorite directive? "Don’t use any mind-altering drugs for 18 hours." Who can—and should--stick to that? Talk about making your life really lame.) I shall perhaps give the kitsch book a shot after scouring the Internet for something about how to avoid making bad decisions like flying to the middle of nowhere for a Costco-quality attempt at getting all the medical advice you can from a so-called “elite institution.” What we’ve learned from all this so far? You don’t need to land in Rochester, M.N. for a comprehensive attempt at getting to the heart of a serious medical manner. You just need to find a well-connected doctor with a big, generous, highly functioning mind who actually cares about you. Meaning, it may be even less possible now than before.

But don’t leave this blog all blue: Remember, I’m the one who’s still kinda purple! And I have to say: It’s fun not seeming like an obvious Eastern European-brewed Ashkenazi-Caucasian Jew all the time. Especially in the friendly heartland, don'tcha knowww…

p.s. Says Lina to me: "I think you find inspiration in the tragedy of this trip, Ad." To this I just smile. "Well, shoot, inspiration is my middle name."

Mayo Dispatch 5: One liners

It was a day of tests, as you've read, so I really didn't have time to prepare anything cohesive. But here are a smattering of short thoughts.

+They give you light-up beepers at Mayo radiology. It's just that when your little red box lights up, you're not on deck for a seared ribeye.

+Today I had a fat aspiration. It's a test rarely done elsewhere. It has nothing to do with how fat I am, apparently, which is nice. But I still couldn't help asking the practitioner inserting the needles into my belly if she could take out a little more than planned. I wasn't met with a laugh, sadly.  I'm sure I was the 23rd person with that question today. But that's what they get for aspirating my fat. Trust me, it's some cultivated shit. I'm one well-fed, free-range, mostly Kosher bastard (which means a juicey breast). Whether or not I'm stress-free, however, is another matter.

+When I fist arrived, I was given autonomic nerve functioning tests, wherein I was tilted on a bed and given blood pressure tests as well as fitted with little round disks that burn and poke at you like saucers tipped with needles. (Fun? No. But not half as cruel as many of the things here people are asked to do.) During the test, the technician asked me if I knew anything about cold weather coming from L.A. I told her I am an original New Yorker. She then asked me why I moved to L.A. Was it for your job? she asked. Partially, I said. What do you? she asked. I'm a writer, I said. Oooh, she said. Movies, TV, books, or magazines? I do a little bit of everything. Whoa, she said. Do you write under your name? Of course, I said. Are you going to Google me? Not until you leave! she said, violating HIPAA privacy laws in an entirely new way.

+Which led me to wonder: What happens to famous people at Mayo? Are there names called out in the waiting rooms the same way they call ours?

+That didn't seem like much of a concern in the radiology dept. I was left in a long hallway of wooden stalls waiting to be called while a professional dairy farmer who looked to be about 25 ("Won the family's 200 acres when I hit 19," he said) and a machinist ("Shoot, I enjoyed loggin' for a few years in there between working on heavy equipment") chatted each other up, Brokeback-style.This wasn't completely new to me. I'm not some weirdo who's never met people without MFAs in poetry. But it was kind of odd listening to them size each other up, literally, while I stood there text-messaging like a wannabe-man. At the end of the day, it should be noted, however, that we were all wearing big blue gowns and looked equally like fools. And that we were all called for a similar test. Apparently you can need the same test if you write blogs or carry logs. Not surprising, but worth mentioning, I think, if only to provide you the image of the type of men who hit this place up. (I.E. For all of its rep as being a medical destination among the movie stars and America's wealthiest, I really haven't seen anyone here, including me, who doesn't look like he or she will pay through the nose for this care. Said the dairy farmer: "Sure is hard on the checkbook, this place. Then again, there's really no point to the checkbook if you're not kickin'.")

+Apparently, it's crazy in Rochester to ask the one food delivery service which Chinese food is the best. Are you getting a feeling that they don't like those antitrusts up here? If so, it only applies to cabs and Chinese food. Not doctors.

+At any rate, Lina believes word is spreading about us in town as if we're some couple of big-city hardasses who need to be avoided. Huzzah.

+One thing's for sure: Just because you have the checkbook for Mayo doesn't mean you have the brains to understand what disease you've just learned you have. Very sadly, a young mom on our shuttle phoned her friends incessantly this afternoon proclaiming happily that the mystery was nearly solved with her baby and that he "probably just has cystic fibrosis." A dark note to end on, I know, but it had to be mentioned. Her father sat next to her shaking his head in what could have been disappointment. For his sake, I hope he didn't know any more than his daughter--at least not for the moment. (One potential wrong-assessment possibility, of course, is that the baby could have also been up for more dangerous futures than CF. Immediate death, perhaps. Still, it was an odd thing about which to hear a young mom make four happy phone calls. In public.)

+Someone--a young doctor, actually--asked me today how "my axons" are performing. Then he laughed. I felt bad for him so I gave him a half smile and returned to trying to get my phone to provide me some information on the heart attack of known serial killer Alex Trebeck. What is...karma? Oops! Lost a halo...

Mayo Dispatch 4: All Bidness (Sorry!)

It was an unusual first day at the clinic-or maybe it wasn’t? I’m a newbie. I’m young and look healthy, remember? Anyway, nothing really much happened. After mall-walking through an enormous lobby, replete with fleets of empty wheelchairs (not including my friend above), we checked in at a massive desk and then received notice that there was no confirmation on whether or not my biopsy slides or reports had arrived from NYC.  Routine for hospitals (on the sending and receiving sides), but I was surprised there were no additional attempts made, especially given the “exceptional” service. I was, however, called in for my first consultation early. That was new. 

My Mayo Doc (MMD), the young man of the no-biography, was pleasant enough. (So pleasant, in fact, that I forgot to tape our conversation for your listening pleasure. Because that's what it would be, readers, right?) Still, when MMD found out that the biopsy slides hadn’t yet arrived, he asked: Why didn’t you just have the procedures done here? After waiting nearly one month for these biopsy results, after knowing that such results do take weeks, I answered plainly, “Because I wanted the results to be here for the clinic to assess.” He smirked, I think. But I don't wanna assume.

In fact, I couldn’t tell if he was laughing at me or just being smiley in that way that health psychologists (like Lina) teach med students to be (so regularly lacking are they of human social skills, that such classes are necessary). But MMD  seemed genuinely friendly. His rundown of my medical records and subsequent exam wasn’t exactly detailed (though maybe he’s the type who keeps a lot to himself). I also had to remind him that it might be beneficial for a certain type of surgeon to assess an MRI that I had given to his desk assistant. (I wasn’t told whether or not he had actually seen the film, but he agreed with my comment. Thankfully, I took the chance to make it.)

Then, I was told I’d have a number of days full with tests and that we (me, Lina, and MMD) would meet on Friday to learn “what [he] thinks.”  Kind of odd and independent for what I believed to be a “group approach.” Especially given that I wouldn't have chosen this person based on random biographical information--or the research he's produced. Of course, it’s possible there’ll be discussions about my 10 lbs of medical data (yes, I carry these in hard-copy form; more on that later in the week). I wasn’t told about group assessments, though. Instead, I was given a sheath of papers, stapled together with an itinerary of some basic and unusual looksees – including a tissue aspiration I had never read about. (100 points for originality, Mayo.) So, that’s what will happen for the next couple of days.

Test. Test. Test. Maybe some lunch. Maybe some water. Maybe I won’t wear my coat to the hospital tomorrow because it’s so damn cold here, every building is overheated to the point that you always feel like you’re in L.A.—you know, short of The Hills cast eating brunch at the table next to you. Another thing: You (meaning I) come to a major medical center for a chance to get to the bottom of a mystery condition most likely linked to a cancer you once beat but must remain careful about, and there’s no mention of including an oncologist or immunologist on the team? I mean, maybe an onc will get a phonecall from MMD, but I wasn’t told about such plans. Oh, MMD, you sly devil, you.

Bottom line, though? I feel as if I’m spending a lot of money—to say nothing of Lina’s time (mine at this point is besides the point)—and may be in store for nothing more than more confusion. Or at the very most, a few blanket statements that I can’t even trust given how casual all of this has seemed, despite the official testing, for which the hospital will be able to bill my insurance company thousands and make me sweat. I’m sorry I’m not 90 and disabled yet, but young people who aren’t children still deserve to be taken seriously. Let’s see how it goes tomorrow. So far, the trip’s just been more of a chance for Lina and I to be silly among a very barren midwestern city full of (literal) sickos. Only to then return to the hotel to watch Heidi and Spencer fighting it out in my beautiful homeland. Oh, the hills. We miss you and your fabulous moving photography of Angel Ciudad.

P.S. I know some of this hospital-trip reality (and disparagement) could be in bad taste for those whose last hopes lie in M.N. But I'm already here, and I need to be here, too. You gotta allow me some shenanigans. Even if the strike was over, TV just wouldn't be enough for me right now.

P.P.S. Guess what city only has only one taxi company to service it? Rochester, M.M. And guess what? They don't have enough cars to handle all the people who need to get to the Mayo Clinic for early morning appointments. So as much as you hate driving on thick sheets of ice, rent a car (and boycott the taxi company at the number 507-282-2222. They're not just a small taxi company; they're run by morons unique to the low -IQ businesses peppered throughout the city). Then again maybe you'll be smart enough to stay adjacent to the Mall of Medicine, a strategy we chose because we're not Sultans. Yet. You heard it hear first.

Mayo Dispatch 3: Waffles and Wha?

The wind howls in Rochester like the cries of nearly dead WalMart employees. 

Last night, we ate at the one Italian restaurant said by Chowhownders to offer quality sauce. Lina called it Ragu on a good day. My capers were as hard as, well, use your imagination.

Today, at breakfast, a nice old man asked me: "You goin' for a ride?"

I asked him: "Wha?"

He said, "To the clinic. When you going?"

I smiled, genuinely, and said, "Thank you."

Being vague can be fun.

Plus: How did he know I was going to the clinic? Was he watching my tears stream into the plastic bowl of froot loops on my table just moments before?

I kid. I didn't eat Froot Loops. Or weep.

That is, not until I saw two waffle irons set up to sear right next to a brilliant machine that dispensed  artery-clogging batter into plastic cups for your carb-induced suicide pleasure. See above for a picture of said device. If I were Tim Burton, I would have used it for a scene in "Sweeney Todd." Who says meat pies are the only ways to dispose of your victims?

* * *

Note to self: Get a good look at the Rochester business) eco-system. There have to be people in town to do business at or around the Mayo Clinic. Big Pharma reps. CT Scan techs. Construction reps. Hell, medical professionals. On our plane, there was a young sharp-looking whippersnapper with a garment bag that said "University of Pennsylvania Hospital." I've never been much of Philly fan, but is it really worth a year of your life to even come here for a fellowship? Probably, but at what cost? What's more, where do the rich docs and their families live? Not in this iced-over ghost-town. Although, if they did, I could potentially see their children starting some righteously innovative rock bands. Isn't that what happened in Scandinavia? Oh, I forgot: Scandinavia is far more interesting than the heartland of the U.S.A. Or is it? Do they have our waffle tech?

Mayo Dispatch 2: The Trip

“Lily Allen or Dylan?”

“Dylan,” she said.

Despite her activist dance card and Brown degree (a liberalism earmark as her righter-wing but lovely father would have it), Lina, my new wife, had always considered Dylan a downer. That is, until today.  (Or maybe she still considered him a downer; the important thing is that she felt ready to accept him, or at least roll on his page.) It was, to be fair, 6 .a.m, and she was, I admit, driving my car to the airport—driving isn’t impossible but it's also not super-easy anymore, so I’d recently relinquished my role as main family locomotorist, which can sometimes make things a little one-sided (I help out by d.j.ing superior tunes, of course).

We were heading out of town—not on a merriment-filled Decemberist holiday trip but to LAX, so we could connect in O’Hare with a peashooter full of wheelchairs and breathing machines up to Rochester, M.N., home of the Mayo Clinic. (There. For now on, I will use the definite article before the hospital name except for when I refer to the place as simply "Mayo," all creamy and white and cold as it seems.)

Was it coincidental that “Blood on the Tracks” was the album rocking the Altima sound system? Was it a Dylanesque “simple twist of fate” that Lina and I married each other just over a month ago and were now all tangled up in more blue—and black, red, and brown--than we ever would have imagined as happy New York daters just over five years ago? (It's not like I had a clean medical history, but we thought all was on the mend.)

It wasn’t a surprise—that’s for damn sure. The wedding, in fact, was a premeditated respite from the doctor-seeking, the diagnosis-receiving, the MRI-taking, and pathology decoding. We had some serious shit hanging over our heads, but we decided to postpone it all to get together and do the deed we felt had almost already been done after committing to each other so fully in LA once Lina arrived to begin her PhD in health pysch, researching the chronically ill and the way their infirmity affects their social, personal, and inner lives (appropriate, you think?). And no, the wedding didn’t go as planned. How could it have? Who deserved it to go well more than us? And was it coincidental that we would arrive for our plane to Chicago (nay, Mayo) just one gate next to the American Airlines planes leaving for Cabo, where we spent our pre-honeymoon flight-waiting eating the same crap Burger King breakfast. 

More important and cultural (this *is the new Glass Shallot, after all—tomorrow, it becomes another blog, perhaps the same one it was yesterday or one-legged version of what it will be next Friday at noon), Lina had just come to appreciate Dylan more from seeing “I’m Not There,” Todd Haynes’s chopped up and self-re-interpreted meta biopic of the poetic Minnesota-raised troubadour starring Cate Blanchett. “Someone’s got it in for me, whoever it is I wish they cut out quick.” That was the spirit this morning even though we had promised to make the trip as wacky and wild as only a bunch of sarcastic rejuveniles would have it.

So what’s with all the gloom? You want to laugh, right? 

Here’s something.

This morning, I argued with the oh-so-prescient guy working the long-term parking on La Cienaga in the hell-section of L.A. surrounding LAX, which is oddly a few miles from shiny Manhattan Beach and all its Starbucks-pumped boogie boarders.

It happened--the argument, that is—because upon parking my car in his safe-seeming lot, he told me I had to leave him my car keys.

“Why?” I asked.

“It’s policy.”

“My policy is never to give anyone my car keys.”

“You gotta relax and enjoy your trip, man.”

Wrong thing to say.

“Do I?”

“Yes. Relax, mi amigo.”

“Do you know where I’m going?”

“It’s vacation time, man, you should relax.”

“How about if I was going to bumblefuck Minnesota for cancer surgery?”

Yes, I assumed he might even understand the word “bumblefuck”; I like to give people the benefit of the doubt. And I wasn’t of course headed to Mayo for cancer surgery, per se (though who knows what’s in store for me and my friendly white blood cells?). Still, I was about done with all this SoCal braindeath. All the halfwitted garage workers and baristas and copy-shop owners saying how “Relaxed” they are and how smart it is to be like them.

No more “calm downs” from people spitting out explanations of nonsensical “policies” I find unsatisfactory. Apologies, Southland, for having the agency to express a thought based on intelligence. But aside from your dearth of employees with even some basic street smarts (Upper Manhattan, when I lived there, wasn’t exactly filled with physics professors, but ask the guy washing your car the best strategy to do your business taxes, and you might be surprised with his answers), this trip was helping me become myself again. I speak kindly and clearly to people—especially to people who are about to serve me food, watch my car, take blood from my arm. So don’t tell me to relax when my voice isn’t raised, and I simply refuse to follow rules I can’t endorse.

“Well, look man,” the schmuck replied, “You don’t have to get all excited.”

I wasn’t excited, as I’ve just explained. I know what excites me, and it’s not conversations with parking attendants on the 6 am shift.

“I’m just not leaving my keys, dude,” I said. “And I’m not letting someone like you tell me that I have to when I’m about to pay $200 to leave my car in a spot from which it will most likely be stolen anyway.”

“Well, you can pay ahead of time and not leave the keys.”

“Really. Is there a reason you didn’t tell me that before?”

“You didn’t ask.”

“Take my credit card,” I said, now completely dispassionate and wanting to move things along as quickly as possible. “21 days of parking. Ring it up.”

I held out my Amex and looked him plainly in the face.

“Look, man, I am verrrry sorry for what you‘re goooing through….—

“Please take my credit card.”

“Ok, ok, just relax man, relax, relax.”

“If you tell me to relax one more time, sir, I might actually get, well, less than relaxed and cause all of us some trouble. Do I have to ask you to take the card again?”

He took the card. I did relax. Then Lina and I stood outside the garage only to receive an offer from another garage’s shuttle driver offering to take us to the airport for $10 since our free shuttle was running late..

“Please thank him for his generosity,” I told the nicer lady-attendant at our garage who had presented us with her neighbor’s charitable gift. “We’ll just wait.”

And we did. And we laughed. And then Lina did a little dance.

Herewith, the love of my life making every nonsensical and frustratingly contemporary situation better.

Go, Lina!

  (Click on below arrow to launch Quicktime.)

***

Two more Mayo trip highlights so far:

1. When we waited for 20 minutes to exit our plane to Rochester so a disabled man could leave first, the flight attendant said that we would all get extra halos for our patience!!! I currently wait for my gift from the J man. And grow impatient. Some angel.

2. There is nothing in Rochester except lots of white, and it's 4 degrees here. I feel like I'm in that terrible John Cusack and Billy Boy Thorthon movie set in Kansas on Xmas eve. You know, the one when they try to rob the mob and everything goes topsy turvy.  Except, I'm not here to do something as fun as steal money, hang with strippers, and then almost get shot.

More a'comin'...For how often do you get the skinny on an experience like this from a dude who should be sitting in Los Feliz dive bars laughing about how Kiefer can't join us for a Guiness 'cuz he's locked up in Glendale for being stupid?

P.S. Am I scared that I have to be here? Many have written with this question. The answer is yes. But not any more scared than I was two years ago when I began noticing the progression of this weird syndrome messing with my muscles and nerves. Not any more scared and frustrated then I am when world famous docs in NY or LA tell me they don't know what to say. It's just that now that people believe me it seems more real to everyone else. So I'll be as flip and honest about it as I feel like. And at the moment, I don't feel like cryin'. I've got DVDs to watch and access to a world renowned medical system just begging to be assessed and skewered-my forte. But let's hope none of that's necessary and we can just do Quicktime dance videos for the rest of the week. I know Lina's got a lot to teach me. The question is: Can you compete?

Was this what you ate on Thanksgiving?

Do I have the right to criticize?

Hell, no. But here are a few guidelines I like to follow, and they're uncommonly helpful during the holidays:

The Painless Diet Upgrader, Best Life/Men's Health

private mr. clooney

How nice that it takes George Clooney's motorcycle accident and subsequent hospitalization to remind the world that no one at hospitals or doctors' offices honors the HIPAA privacy laws--I can't tell you how many times I see doctors and medical workers saying patient names and diagnoses out loud in elevators, cafeterias, clinic hallways, etc. The challenge now, I guess, is just to get someone other than your mom to care about what you got!

the invisible band-aid (and when will a candidate speak about fraud?)

Jonathan Cohn's recent TNR piece about why Obama's proposed health plan--which will "wade into" universal health coverage--isn't as easy to get behind as John Edwards's--which will create a mandate for all children and adults to obtain coverage--may not be very helpful to the cause of the Democrats or to the uninsured. He implies that by wading in and focusing on other matters--"actually making medical care less expensive by eliminating waste"--he's leaving uninsured American adults on the side of the road for a few years. But he's wrong to harp on this point, and wrong that building a plan like this shouldn't take some time. Edwards's mandate is the kind of grandiose, all-encompassing proposal a Republican might put forth about another issue (say, war?). Obama shows reason and knowledge. And while he hasn't come out and said it clearly, he also shows that he's the most committed candidate to patient advocacy and sniffing out fraud: insurance fraud, billing scams, and overpriced nonsense (such as charging extra multi-hundred-dollar fees to walk into a building where you will then pay thousands for, say, an MRI). Whether or not this will hurt patients currently being denied expensive, necessary immune-modulating therapies like IVIG all over the country, it's hard to say--they may have no candidate to endorse. But at least Obama isn't screaming "universal healthcare" from the tops of buildings in an attempt to win a popularity contest. He's thinking about how to best achieve it--and given Cohn's example of a family dealing with the aftermath of cancer--how to help those with complicated medical histories who actually have coverage but now must work all day long to continue to afford it (much more Americans than you would think). So far, no candidate, to my knowledge, has addressed the growing fraud problems, but Obama looks somewhat trustworthy on this issue. Just don't discount him because he isn't promising to mend overnight the country's problem with a giant (potentially disappearing) band-aid that will hurt as many people as it will help.

california's (and perhaps your state's) dirty little healthcare secret

Tired of infuriating health insurance stories? How about those tales of dirty doctors who pad their bills or charge you for mysterious services? Well, I have a dirty healthcare secret that will put both of those story categories to shame. Healthcare costs aren’t just out of line because of doctors and insurance companies. They’re a mess because the hospital that houses your doctor’s office may well be fleecing you, right before your eyes--committing a form of insurance fraud that you may well approve and support every time you go in for an exam.

 

Let’s rewind: Today, it’s more common across the country to find top doctors at a hospital. Conventional wisdom, if not the terribly arbitrary USA Today rankings, tell us that so-called “great” doctors, especially specialists, are today affiliated with our city’s best medical and teaching facilities. In Los Angeles, you may not even be able to find a top-ranked specialist in a private office anymore, so aggressively have our “best” university hospital systems snatched them up for their research and teaching prowess.

 

For that reason, of course, you often have to see your doctor inside a hospital-affiliated office building, or on the hospital or university medical-school campus. Rarely do you actually see a doctor for a checkup inside the part of a hospital that functions as a hospital—the old-school building with the rooms for surgery patients and the E.R. But whether or not you visit a doctor for an exam in a true hospital or simply inside a hospital-related building—or in a multi-use hospital building on a multi-building hospital  campus--you are only going in for an exam. Where your doctor chooses to hang his shingle—be it in a private office or a hospital-affiliated professional building--shouldn’t be your responsibility. But hospitals in LA, and throughout California as well as other parts of the country, now believe that it is. And they’ve decided to kindly and illegally pass the costs down to you.

 

Because many doctors now practice medicine inside some form of a hospital building, many hospitals now bill you for simply walking through their door in addition to the cost of your doctor visit. That means that if you have, say, my national Blue Cross PPO—an expensive plan that I break the bank to afford due to chronic medical problems as a 10 year cancer survivor--and you go to see a doctor who is in your plan, you do not only have to pay your $20 co-pay. You have to pay an additional co-pay, months later, at home, for what hospitals call a “facility fee,” which is often around $135.

 

The kicker? Hospitals that perpetuate these thieving policies--and I have yet to find one in L.A. that doesn't--bill these fees to your insurance company and eventually to you, months later, with the insurance code for what is, essentially, an emergency room or outpatient hospital visit. Therefore, you often have to pay two or three times your actual co-pay to see a doctor “inside a hospital.” And since one seldom, if ever, undergoes outpatient hospital procedures or E.R. services at a doctor visit, these charges are not just unethical. They are fraudulent. And they need to be fought.

 

So that’s what I did. After months of arguing about these costs with hospitals and insurance companies—my insurance company, who is actually on my side, now tells me that they will fight and eventually take care of every one of these extra fees, but that I should report them to the fraud department—I recently decided to take matters into my own hands. Why should I need to fight every bill I receive four months after the fact?

 

The other day, I saw a doctor and decided to say no. I was given a form to sign before seeing the physician for a checkup that said "confirmation of hospital admission." I refused to sign it. I am not being admitted to the hospital, I told the secretary. You are here to see the doctor, and he works in the hospital, she replied. Doctors work in hospitals and hospital-affiliated office buildings all over the country, I said, but this only happens in California, and it's fraud. And by the way, this isn’t the hospital: this is a hospital-owned building.

 

Eventually, the secretary allowed me to see the doctor, and I didn't have to sign on to pay the extra fee. But I found the crime being committed in an even more blatant way at this place: this particular hospital doesn’t just bill you for their facility fee after the fact, they make patients sign forms saying that they are being admitted as outpatients to hospitals for hospital services (illegal, and how many people read all the forms they have to sign at a doctor’s office?).

 

So I went a step further. I asked the secretary what these “services” were. She told me that they included the taking of my blood pressure and the weighing of my body. Oh, those aren’t just part of my doctor’s visit anymore, I asked? She didn’t respond, and just proceeded to let me through the doors for me to have my vital signs taken.

 

Now, I’m sure I’m not done with this particular battle. If I know the lovely people who pay the rent for the office in which my actually ethical doctor practices medicine, they will bill me for this bogus fee after the fact, and I’ll have to fight this bill like the rest of them. But I've been to top doctors all over the country, and I've never seen this happen anywhere else except in Los Angeles--though, to be fair, my insurance agent reports that the tactic is being employed more and more in different parts of the country.

 

The egregiousness remains unique, however: it stems from the fact that the fleecing isn’t coming from universally hated insurance companies or from shady doctors but the so-called upstanding institutions that put out the research that’s driving many of our new medical innovations—the supposedly ethical facilities that promise to treat the sick fairly and justly, and, in many cases, teach the next generation of doctors.

We’re no longer being robbed by corporate America (HMOs, say) and ethically challenged professionals, who will always exist in a capitalistic society. In a city where most of the highly ranked doctors examine patients inside hospital buildings, we’re being outrageously robbed in an organized, official and often underhanded manner by the institutions we have always trusted most to follow the law and save our lives.

 

 

why i was gone this week, or "the intravenous variations"

Imagine if you had a really amazing, complex and intriguing personal story--this one, happens to concern your medical state--and you were a writer who had found ways to turn it into at least three distinct stories (for now), to write these stories, and then to find out that they're appreciated by those who commissioned them but sitting on someone's hard drive for an undisclosed amount of time because, well, the magazine business is pretty shitty for most people involved--at home on their computers, writing the stories, and in the magazine's offices, editing the stories--what would you do? Would you want to publish these stories on your blog? Especially now that your blog won a lot of attention from a positive blurb on Typepad's homepage? Or would you be patient--and ethical, obviously--and hope that one of the mags will slot you in along with that Justin Timberlake interview sooner than you, well, um...

milking the truth

Not long ago, I communicated with Andrew Weill, M.D., the author of "Spontaneous Healing" and other books devoted to integrative and complementary medicine (in which it's OK to blend alternative medicine and nutritional strategies with Western approaches). After speaking with Dr. Weill for my story, our conversation downshifted in my reasons for writing it, which include a chronic auto-immune disease in the wake of cancer, among other things. My prescription became: go see an "integrative oncologist" in San Francisco--one brilliant and uncommonly kind Donald Abrams at USCF's Osher Center--which I did.

Abrams was the right choice--I'm cancer-free now, but don't want a relapse, or a secondary cancer--and he had trained with Weill, and had lots of nutritional and herbal advice for me--among prescribing some Western strategies and a Chinese medical consult. The one thing both world-famous doctors advocate, however, is: CUT OUT DAIRY. The oncologist told me something I had heard for years: that no human, short of some people in Scandanavia, have the genetic makeup to digest it naturally--which is why it causes so many digestive problems. The other reason? It induces inflammation, if only because it's animal protein, and can cause cancer, specifically lymphoma and leukemia, my friends from the past.

Now, comes Shallot friend and colleague Hannah Wallace to the cause with a giant, amazing, and deep Salon article about the disease-curing benefits and bacterial dangers of raw milk, as well as the subcultures of raw-milk drinkers who will do anything to step around the government to get it. What's going on here? Hannah writes:

"Many people come to raw milk as a last resort; one man I spoke to for this article had terrible asthma, one woman had debilitating arthritis, and another had osteoporosis (which pasteurized milk hadn't improved) -- and all saw complete reversals of their diseases after a few months of drinking it. Their stories were persuasive, but in an age where E. coli is turning up at Taco Bell and even in organic spinach, I wondered: Is it really safe to drink unpasteurized milk?"

Not only that, but what about my doctors' cautionary words? Why are we still obsessed with udder liquid when so many alternatives abound? I posit biological psychology. The milk habit is hard for a civilization to break when it's the first food--the first suggested "healing food"--offered to us. Of course it's healing diseases in a small subsection of the population. So's love and, for that matter, God.

UPDATE: Hannah writes to correct me about milk causing cancer. She says:

"That's true of pasteurized milk, honey, not raw milk.  SO many people digest raw milk with no problem whatsoever.  If you need any proof that our ancestors drank rawmilk, I'll send you "The Untold Story of Milk," by Ron Schmidt.  Raw milk contains lactobaccillus, which means that even those who are lactose intolerant (i.e. can't digest pasteurized milk)  can drink it with no gas or bloating. And it has CLA (grass fed milk does) that FIGHTS cancer and arthritis (which is inflammation) as well as asthma and eczema."

LAST UPDATE: My integrative oncologist advises me to Google "milk and cancer" and then visit milksucks.com. He advises erring on the side of caution: He just presented at the milk and prostate cancer link--references to milk and lymphoma exist in the Integrative Cancer Therapies tumor-board article on refractory lymphoma. So those of you with PubMed, or some medical studies database, as well as the ability to stomach all this jargon, get on there and have a read. Then send me hate mail for ruining your morning.

What I've learned: Milk is way hotter a topic than I ever thought. Next week: A celebrity deathmatch on, yes, you guessed it, TEA.

 

advice i need to take

Glass Shallot friend and writer extraordinaire Hannah Wallace published this uncommonly  enlightening review of Nina Planck's "Real Food: What To Eat and Why" in the LA Times Health section a few weeks ago. Did you see it? The LAT Health section is so on the ball these days that a doctor I just saw in the Bronx said he never misses a page. We here at the Shallot are very glad Hannah's helping them in their plight--especially on the issue of how industrial food will be the end of us. Do read the review when you can: Apparently, drum roll, lard is good for you. (And no, my writing this has nothing to do with my perhaps self-destructive love for the Bacon of the Month Club [p.s. I only give memberships as gifts to unflinching carnivores these days]).

[p.p.s. Nina Planck's Web site is worth a visit.]

Mother Nature's Son

I've got an op-ed in today's LA Times about the Abraham Cherrix case. (You can read it below by scrolling past the explanatory pre- or post-text and  clicking on the post-continuation).
 

It was an honor to write, but I should reiterate and/or expand upon a few things where I have the space.

1. I do, of course, realize that the Hoxsey Herbal method has been proven ineffective by many. Still, I view the issues in this case--that any government can control how a family treats a mature, young man's body, and that said young man may be forced to call the county his parent--absolutely worth serious discussion. Having gone through chemo, I do not, as a rule, view Cherrix's parents as trying to help their son euthanize himself. And neglect? Well, I definitely believe in many of the chemotherapeutical treatments available--and certainly, the main Hodgkins protocols have proven themselves time and again--but once more, we are all allowed to make choices. And with parental consent, an articulate 16-year-old  may certainly choose another path without governmental intervention. This is America.

2. I did, in fact, receive a stem-cell bone marrow transplant, and this treatment, along with radiation, did send my Hodgkins into what I hope will be a permanent remission (so far, so good after nearly 10 years). However, the stem-cell transplant I received is what's called an "autologous" stem-cell bone marrow transplant. What that means is that my doctor extracted baby cells from my blood in a process called aphoresis, and then infused them after high-dose chemo knocked my blood cell counts down to zero. The important fact being that these were my stem cells, and that this isn't the sort of stem-cell therapy that may be available if we can help overturn George Bush's very stupid recent decision.

That said, transplants like mine are solid proof that keeping those controversial stem-cells alive will likely cure many diseases. I'm a walking piece of evidence.

Now you may be thinking: Great, Adam, but how then can you make a case for Mr. Cherrix and his family? Well, here's how: I didn't say that chemo wouldn't or doesn't work. All I said is that the Cherrixes should be able to choose the therapies they believe in. And hell, the kid already went through chemo. It's not like the people called Western medicine stupid from the get-go and asked their kid to munch on basil, singin' everything's gonna be alright. Telling a young adult what medicine (s)he needs need to take, and then legally disowning him or her  (even 50%) from his or her parents, is inane -- and no less serious than telling a woman she doesn't have the right to choose.

3. I love my parents, and do not harbor any resentment about medical choices made in my past. But it needed to be mentioned that these decisions were made for me as a young man with Hodgkins. And that the treatments chosen come with some of their own long-term effects. Just like the disease. Just like marijuana. Hell, just like tomato sauce.

4. To answer some reader and friend/colleague questions: I am gettin' by in spite of all the doctor visits and strange effects. I am aware of probiotics, enzymes, etc. And I am behind mind-body and Eastern medicine. I actually treat myself with many alternative therapies--including exercise and healthy eating-- in concert with Western medicine. Just in case that wasn't clear.

5. My long-time oncologist is a wonderful man and doctor, and the original version of my article contained a line about how he's become a friend and mentor I trust deeply. I also value many other doctors who have helped me and continue to try to help me.

6. Thanks for reading, and if you're new to this blog, please stay tuned for more opinions on health, politics, culture, as well as personal tales of comedy, irony, triumph, self-discovery, and ocassionally, a little hardship.