Trump Is Mentally Unbalanced-- Where Are His Doctors When He And The Country Desperately Need Them?

 

Before moving to L.A., I had lived in New York, Amsterdam and San Francisco. In L.A. I discovered something unique to this city. People ask you to invest in their films. It's insane because "invest" is the wrong word. It means you give them money for the film and then you write it off as a tax loss. I avoided that ugly world for the whole time I lived here. Then I got cancer. The doctor takes care of fighting the cancer. The patient takes care of fighting the side-effects. One of the side effects, it turns out, is that you become extremely impaired in every day, including mentally. Some unscrupulous hustler/movie producer figured out I was suffering from the side effects and tricked me-- easy in my state of mind-- into investing a very large sum of money in his absurd film, Cold Moon. I'm listed as a producer. Needless to say, I lost all the money. Lesson: Don't make important decisions when you're on strong drugs.

Guess who's on very, very strong drugs after his treatment in the hospital for COVID? Hint: Donald Jr, Thinks Sr. is acting insane. Gabe Sherman on Monday: "Trump's erratic and reckless behavior in the last 24 hours has opened a rift in the Trump family over how to rein in the out-of-control president, according to two Republicans briefed on the family conversations. Sources said Donald Trump Jr. is deeply upset by his father’s decision to drive around Walter Reed National Military Medical Center last night with members of the Secret Service while he was infected with COVID-19. 'Don Jr. thinks Trump is acting crazy,' one of the sources told me. The stunt outraged medical experts, including an attending physician at Walter Reed. According to sources, Don Jr. has told friends that he tried lobbying Ivanka Trump, Eric Trump, and Jared Kushner to convince the president that he needs to stop acting unstable. 'Don Jr. has said he wants to stage an intervention, but Jared and Ivanka keep telling Trump how great he’s doing,' a source said. Don Jr. is said to be reluctant to confront his father alone. 'Don said, I’m not going to be the only one to tell him he’s acting crazy,' the source added. One area where the family seems united is over the president’s manic tweeting early Monday morning. After Trump sent out more than a dozen all-caps tweets, the Trump children told people they want Trump to stop. 'They’re all worried. They’ve tried to get him to stop tweeting,' a source close to the family told me. The Trump family’s private concern about Trump’s behavior could raise questions about his fitness for office. Trump has been prescribed drugs that medical experts say can seriously impair his cognitive function. Last night the New York Times reported that steroids, which Trump is reportedly taking, specifically dexamethasone, are known to 'affect mood, causing euphoria or a general happiness.'"

Uh... yeah... to put it mildly. The state Trump is in now is what the 25th Amendment was passed for. And the insane tweeting has only accelerated. Yesterday Michelle Goldberg tweeted that Señor Trumpanzee's "Twitter feed is always nuts but right now it really seems like he’s suffering some sort of psychological implosion." Well, yes, he clearly is. Earlier, Wisconsin Republican icon Charlie Sykes tweeted "Trump’s Twitter feed is extra-deranged tonight." That super-derangement spilled over into the next day, when the whole country-- world-- could watch Trump falling apart mentally and emotionally. He should be aware from electronics and in the care of physicians-- and I have nothing against osteopaths at all.

What if he decides to order the U.S. military to attack someone? Who's going to stand up to him? Certainly not Republicans! When he ordered them to break off negotiations with Democrats on the desperate needed pandemic relief package that he has held up, McConnell and McCarthy both said, "Yes, Your Highness," screwing over the country-- and their own constituents. "Trump pulled the plug on ongoing bipartisan coronavirus relief talks in an abrupt move that jolted Wall Street and surprised lawmakers of both parties," reported the Wall Street Journal but hours later called on Congress to approve a bill providing another direct check to many Americans." Hours later he was tweeting that Congress must pass the package IMMEDIATELY. The Washington Post: "First, he says he won’t pursue a package until after election. Then he demands Congress immediately pass bills." No one knows what to make of his erratic behavior-- other than scholars of King George III and fans of Hamilton.

And... Judd Legum who's Wednesday morning newsletter was devoted to a close look into Trump's Drugs. He wasn't treated by a quack he's been pushing, Stella Emmanuel, and he didn't take hydroxychloroquine, Legum wrote about what he did take:

• Regeneron's antibody cocktail, a promising experimental drug that has been made available to fewer than ten people outside of clinical trials.
• Remdesivir, a drug administered by IV that was found to shorten hospital stays for patients with serious cases of COVID-19.
• Dexamethasone, a steroid that was found to increase survival for patients with severe cases of COVID-19 and require supplemental oxygen.

Legum pointed out that "hydroxychloroquine is not an effective treatment for COVID-19 [and that] Trump foisted an unproven and potentially dangerous treatment on the American public for months. But when his own health was on the line, Trump unwilling to follow his own advice." (No one know if he drank any bleach or shoved a UV light up his ass, though.)

Despite the overwhelming scientific evidence, hydroxychloroquine boosters are disappointed that Trump has abandoned the drug. Dr. Emmanuel, the conspiracy theorist that Trump promoted in May, said whoever convinced Trump to stop taking hydroxychloroquine should be "punched in the face."

She offered to prescribe hydroxychloroquine to White House staffers.

Steve Jalsevac, a hydroxychloroquine fan who co-founded the far-right website LifeSite News, urged readers to "contact the White House to ask why the president and Melania are not immediately being given this well-proven-in-practice medication protocol for COVID infection.”

Others, like former White House staffer Sebastian Gorka, were in denial. "I’m sure he’s taking his hydroxy this morning just like I did this morning," Gorka said. 

Most people who have heard of Mona Charen, I suspect, know her as an outspoken, partisan and very conservative Republican. She's written 3 books and you can figure out from the titles, who she is: Useful Idiots: How Liberals Got it Wrong in the Cold War and Still Blame America First (2003), Do-Gooders: How Liberals Hurt Those They Claim to Help (and the Rest of Us) (2005) and Sex Matters: How Modern Feminism Lost Touch with Science, Love, and Common Sense (2018). She worked as a speechwriter in the Reagan White House and for Jack Kemp. I gather she's not supporting the fascist candidate next month but the institutional conservative: Joe Biden. About a month ago she wrote The Coming Biden Landslide for the #NeverTrump site, The Bulwark. In her mind, Biden is the Republican saint, Ronald Reagan, and Trump is 2020's Jimmy Carter, detested by Republicans to this day.

Yesterday another Bulwarker, #NeverTrump Republican Tim Miller, wrote that when he looks at Trump’s "Twitter-centric negotiation over the possibility of a second COVID-19 stimulus package in the past 24 hours, I just gotta say, I think he might be fouling this up. He is the Great Negotiator. He 'wrote' a whole book on the subject, you may have heard of it. And here I am, a liberal arts major. A person who did not not go to Wharton Business School while pretending that I did... But speaking as a novice, this stimulus negotiation looks like an epic self-own on par with bankrupting a casino or selling steaks in a home electronics store. For those who aren’t juiced up on steroids or slamming dexamethasone, it might be hard to keep up...

For the last few months, Democrats and Republicans have been-- slowly, distractedly-- fighting over the details of a supplemental COVID stimulus package that would address the severe economic hardships brought upon many families and businesses by the pandemic. On Tuesday, the president, who had been largely absent from these discussions previously, crashed through the wall like the Kool-Aid Man in an attempt to demonstrate his mediation prowess.

First, around 2:30 p.m., he executed one of his patented gambits straight out of Art of the Deal:

The “economic populist” timed this power move on the heels of a conversation with Austerity-for-Thee Cocaine Mitch, blindsiding his own advisers (element of surprise!) in a series of tweets announcing that he will end negotiations on the stimulus package until after the election. As part of the tweetstorm, he also kindly ensured that people are aware that Nancy Pelosi wanted to pass a munificent $2.4 trillion in aid for people still struggling through a once-in-a-century pandemic.

Here-- within half an hour after his tweeting began-- is how the stock market responded to his announcement:

So, as an opening bid, it left a little bit to be desired, I would say. Jonathan Chait, another non-businessman mind you, called it “the worst political blunder in history.” A tad dramatic maybe, but not a great sign.

Regardless, it seemed like the dire reaction in the markets left Trump in a bad negotiating position vis-à-vis Speaker Pelosi-- and she agreed, firing off a single tweet about how the president’s ploy exposed his heartlessness.

This sense was confirmed five hours later when the president took a new/old tack, recanting his earlier contention that Pelosi’s offer was overly generous and adding a dollop of his trademark schoolyard misogyny:

With balance restored to the negotiating table, you might think he would wait to see how Pelosi would respond.

Not this president.

No he needed to further demonstrate his position as the alpha.

So in between IVs, presumably during commercial breaks from the shows, possibly wearing his preferred nightgown, he began to unleash a torrent of tweets negotiating against himself like a person suffering from a bout of psychosis due to a corticosteroid therapy.

First he did a complete 180 on his earlier position that Congress should pass no stimulus legislation, retweeting a news story about the Federal Reserve chair that implied Congress should spend even more!

Then he retweeted the esteemed Paul Sperry of Investor’s Business Daily-- not once, not twice, but twenty-two separate times-- on matters ranging from #Obamagate to the “disgraceful” moderator of the debate that Trump totally won to a not-all-that-veiled attack on Joe Biden for being concerned about health care when his wife and child died in a tragic car accident.

Trump followed that up with eight retweets of Fox News analyst Gregg Jarrett, calling for the jailing of his former opponent Hillary Clinton and disparaging Speaker Pelosi’s looks.

He then tweeted a meme depicting the late Chris Farley—in character as the thrice-divorced homeless motivational speaker Matt Foley from the classic SNL sketch-- berating Attorney General Bill Barr for not arresting enough political opponents.

It’s unclear to me if any of these missives were part of the gamesmanship of the ongoing negotiations but I wanted to make sure that everyone had a clear picture of the state of play.

Around 10 p.m., on day five (we think) of the experimental drug regimen he is taking for combating the coronavirus, the president then launched back into the stimulus negotiations that at this stage are taking place only between himself and his earlier tweets.

No longer wanting to walk away completely, the president demanded that Congress pass two pieces of standalone legislation, the first bailing out the airline industry, the second sending a round of $1,200 stimulus checks out to our “great people.”
In the final tweet at the time of writing, he tagged Nancy Pelosi-- whose visage he had insulted hours earlier and who has been silent as he dickered for hours-- presumably in an attempt to reopen the line of communication with his counterparty.

Whew.

Given that I have never been “in a boardroom” for a high-stakes parley like this and that I cannot take the full measure of Donald Trump since he spent the day hiding from the cameras as the novel coronavirus infection consumed him, I can only turn to a celebrity negotiator for his expert analysis on what transpired:

"The worst thing you can possibly do in a deal is seem desperate to make it. That makes the other guy smell blood, and then you’re dead."
—Donald J. Trump.

Hard to argue with that.

After Chemo

I get up at 4 am and slave away at the computer all day. I consider myself lucky that I can take some time out to swim and hike and do some errands. I still haven't found the time to do my taxes. But when a neighbor told me one of her dearest childhood friends was doing badly with a lung disease and couldn't eat or sleep I took them both to an above board medical marijuana dispensary. It was strange because here I was driving to a marijuana place with a frail little lady with an oxygen tank, telling me she's a Republican and wanting to debate me about Choice. She's vehemently anti-Choice.

I asked her if Medicare is crucial in her treatment and, of course, she said it is. It's crucial for everyone who gets a catastrophic illness. I mentioned that Ryan-- her favorite current Republican-- wants to wreck it. She said he just wants to make it better and save it. One thing we did agree on though, is that Hillary would be terrible for America and that Trump would be worse but that Bernie would be a great president. It shocked me that a Paul Ryan fan is feeling' the Bern... even a little. She'd vote for him over Trump. She wouldn't vote at all if it was Trump vs Hillary.

Things have really changed a lot for me since I was down and out with cancer and I thought I'd go through some the changes. In the course of the chemo and stem cell replacement operation-- all in about a year and a half-- my weight went from 185 to 130 and has now climbed back to 180. That's pretty noticeable to anyone who sees me. Other things are less apparent. The one good side effect from chemo is that I didn't have to shave in over a year. Then my beard started growing back weirdly and in fits and starts. Now it's pretty much back to normal (like 95%).

Other side effects were all bad and are mostly all gone. My balance was so bad that I couldn't even lift my foot high enough to slip into a flip-flop from a standing position without a battle to keep from falling over. The staircase in my house was so daunting that it would take me the better part of 10 minutes to walk up or down. One time I had to curl up and take a nap on the landing after 5 steps. Now it takes me 10 seconds to go up or down the stairs without even thinking about it.

Stuff like an inability to taste anything have largely gone away. I can twist off a bottle cap now; which I didn't have the strength to do a few months ago. I'm driving again. I can swim laps again and I can sort of run. I was unable to for months, which made jaywalking scary. I'm afraid to go back and look at the posts I wrote while I was on chemo but most of my cognitive functions have been gradually returning. My eyesight is mostly back most of the time and that's a relief although every now and then I still get badly blurred vision-- less so all the time. And the susceptibility to any random infectious diseases is much less-- enough so that my doctor said it's OK to get on a plane again without wearing a mask. (New York, here I come.) Since all my immunizations built up over a lifetime were wiped out with the stem cell transplant I could have gotten anything from anyone near me. I did, in fact, manage to come down with double pneumonia but that seems to have run it's course. This week I had 5 more shots for stuff from polio to diphtheria and all kinds of poxes. Those immunization shots will go on into 2017.

After the stem cell replacement operation I never had any kind of bleeding gums when I brush my teeth. That's a good thing and I hope that stays. I still have neuropathy in my feet and hands, a pretty bothersome nerve disease which may or may not go away. I remember when a friend of mine told me I would learn to live with it and I said I'd rather die. I've now learned to live with it. And, I'm happy to say that although I have plenty of marijuana around from when I needed it to eat and sleep, I haven't been in the least bit tempted in 8 months. By the way, there's no chance I could have done this when I was getting chemo or recovering from it-- nor can I do it now:

The Republican Health Care Plan Hasn't Changed: Don't Get Sick-- And If You Do, Die Quickly

Last October-- a month short of a year ago-- I started treatment for a rare form of cancer. The treatment ended, successfully, about a month and a half ago after a month in the hospital for stem-cell transplants. Today I spent the entire day at City of Hope's day hospital getting maintenance treatment, something I'll probably be doing every few months for the rest of my life. I've kept a sporadic running diary of my adventures in the world of medicine that you can check out here if you'd like.

Tuesday you probably read, as I did, the Andrew Pollack piece in the NYTimes that everyone was talking about, Drug Goes From $13.50 a Tablet to $750, Overnight. Short version: A typical greed-obsessed 32-year-old Albanian-American hedge-fund manager buys the rights to a life-and-death drug and jacks the price into the stratosphere. He isn't dragged out of his office and killed but goes on TV instead and will soon be talked about as a Ted Cruz, Jeb Bush or Marco Rubio potential running mate. The piece has been updated because the ensuing uproar caused one of the companies (UPDATE: now Shkreli has partially raised the white flag himself, lowering the cost per pill to a so-far undisclosed price.) involved to rescind the bulk of the increase. Blended, for those who don't have access to the Times, these are the most crucial bits:

A huge overnight price increase for an important tuberculosis drug has been rescinded after the company that acquired the drug gave it back to its previous owner under pressure, it was announced on Monday.

However, outrage over a gigantic price increase for another drug spread into the political sphere on Monday, causing biotechnology stocks to fall broadly as investors worried about possible government action to control pharmaceutical prices. The Nasdaq Biotechnology Index fell more than 4 percent.

“Price-gouging like this in the specialty drug market is outrageous,” Hillary Rodham Clinton, a contender for the Democratic presidential nomination, said in a tweet on Monday. She said she would announce a plan on Tuesday to deal with rising drug prices.

Ms. Clinton was referring to the actions of Turing Pharmaceuticals, which last month acquired Daraprim, a 62-year-old drug used to treat a serious parasitic infection, and raised its price to $750 per tablet, from $13.50.

The cases of Daraprim and of the tuberculosis drug, cycloserine, are examples of a relatively new business strategy-- acquiring old, neglected drugs, often for rare diseases, and turning them into costly “specialty” drugs.

Cycloserine was acquired last month by Rodelis Therapeutics, which promptly raised the price to $10,800 for 30 capsules, from $500. But the company agreed to return the drug to its former owner, a nonprofit organization affiliated with Purdue University, the organization said on Monday.

“We discovered literally on Thursday the strategy that had been undertaken” by Rodelis, said Dan Hasler, the president of the Purdue Research Foundation, which has oversight of the manufacturing operation. “We said this was not what we had intended.”

By Saturday, he said, Rodelis had agreed to give back the drug. Rodelis confirmed this in a brief statement on its website.

The foundation now will charge $1,050 for 30 capsules, twice what it charged before, but far less than Rodelis was charging. Mr. Hasler said the new price was needed to stem losses.

Cycloserine is used to treat multidrug-resistant tuberculosis, a serious form of the disease that does not respond to the usual drugs. There are only about 90 new cases a year in the United States, Mr. Hasler said, and about half those patients get treated with cycloserine.

Turing does not appear ready to surrender. Turing’s founder and chief executive, Martin Shkreli, a former hedge fund manager, used television interviews and also Twitter and Reddit to defend his move.

He said that toxoplasmosis, the infection Daraprim is used to treat, had been ignored by the pharmaceutical industry because there was little money to be made. Now that Turing can presumably make money, he said, it will be able to educate doctors about the disease, improve delivery to patients and develop better drugs for the infection.

Infectious disease specialists, who have protested the price increase, question the need for new drugs for toxoplasmosis and say that if Turing wants to develop such drugs, it should use money from investors. They say the price increase will raise the cost of treating some adult patients with toxoplasmosis to hundreds of thousands of dollars a year.

Senator Bernie Sanders of Vermont, who is also vying for the Democratic presidential nomination, sent Turing a letter on Monday demanding information on the price increase.

“Without fast access to this drug, used to treat a very serious parasitic infection, patients may experience organ failure, blindness or death,” Mr. Sanders said in a letter written with Representative Elijah Cummings, Democrat of Maryland. The two lawmakers have been investigating sharp price increases in drugs, many of them old generics.

Last night, Chris Hayes had Bernie Sanders on his show talking about this whole outrage-- specifically and general-- and what he's been doing to work on this problem in the Senate. Watch what Bernie had to say about it. Shkreli is just the latest ugly face of a catastrophic problem that needs to be seriously addressed-- but, because of the way our elections are financed, hasn't been. (You can contribute to Bernie's campaign here.)



It's lovely that Hillary jumped in; none of the Republicans, to my knowledge, have. But it is a subject that Bernie Sanders has been working on for most of his career. Just before I started my treatment, I started covering how generic drug prices have been skyrocketing and how Bernie was taking on an issue that few others wanted to touch.

Remember, Medicare Part D is "Republican Health Care." It was supported by virtually no Democrats except a gaggle of right-wing Blue Dogs, and it demonstrates the inherent unfairness towards working families that is emblematic of the GOP approach to health care. When the House voted on Bush's Medicare Part D scheme on November 22, 2003, it passed by only 5 votes, 220-215. 25 Republicans joined nearly the entire Democratic conference to oppose it. 

The 25 Republicans who opposed the Bush proposal are against all forms of government involvement in healthcare. Tthe 16 Democrats who backed it were almost entirely reactionary Blue Dogs, and only two of them, Colin Peterson (MN) and David Scott (GA), are still in Congress-- where they're still voting for Republican policies that wreck the lives of ordinary working families. The others were subsequently defeated or forced to retire to avoid being defeated. As Xavier Becerra (D-CA) explained recently on the House floor, "Congress should be in the business of making life better, not worse, for everyday Americans."

Bernie's bill, S.1364, the Medicaid Generic Drug Price Fairness Act of 2015, is winding its way through a Republican-controlled Congress hostile to the very idea of, in Becerra's words, "making life better, not worse, for everyday Americans." Since Bernie introduced it, Elizabeth Warren (D-MA) and Sheldon Whitehouse (D-RI) signed on as co-sponsors, joining Bernie, Sherrod Brown (D-OH), Mazie Hirono (D-HI), Richard Blumenthal (D-CT) and Al Franken (D-MN). The bill would make generic-drug manufacturers reimburse Medicaid for excessive price increases (increases greater than the rate of inflation). If Bernie's bill passes, it will save taxpayers $1 billion annually, which would cut into excessive profits by the GOP-enabled pharmaceutical corporations.

One of the most common side effects from chemotherapy is neuropathy, extreme pain in the feet, legs and hands. The pain is nerve damage and normal painkillers have no effect on it whatsoever. Lidocaine-based gels, however, ameliorate the worst pains. And the worst pains are pretty bad; it makes many patients suicidal-- many patients. Lidocaine has always been a relatively inexpensive drug. I used to buy a tube for around $25. A tube lasts two to three weeks. Suddenly, though, the generic-drug manufactures were all bought up and the price went from $25/tube to $300/tube, making it unaffordable to thousands of cancer and diabetes patients in extraordinary daily pain.

That's what Bernie and other champions of working families in Congress are trying to combat.

Attorneys general in Connecticut and Vermont are also looking at possible collusion among some manufacturers. There have been allegations of practices such as buying up several generic drug companies as a way to corner the market-- and set pricing-- for a specific drug.

At the June 6-10 American Medical Association’s House of Delegates meeting in Chicago, the delegates instructed the AMA to pursue efforts to find ways to address the increases.

Many physicians spoke of specific instances of generic drug prices go up multiple times their cost, sometimes abruptly but more often over the past few years. For instance, said Georgia delegate John Antalis, MD, the price of the antibiotic doxycycline now costs $276, up from $70 a few years ago. One physician said a patient called him from a pharmacy to report that the generic version of aripiprazole (Ablilify/Teva) cost more than the brand name of the drug.

At least 12 states require pharmacists to give patients to generic drugs when available and many more allow the substitution. If the plans permitted patients to get whichever version of a drug was cheaper, that could help fight some generic drug price increases. Health plan specifics are a matter of state regulation.

At the AMA meeting, Mario E. Motta, MD, cardiologist in Salem, MA, wondered why generic digoxin, the pharmaceutical version of digitalis (a common garden flower also known as foxglove), cost $180 when it costs about a penny a pill to manufacture and has been used for more than 200 years as an herbal tea.

While I was getting the stem-cell operations, there was another patient of my doctor's in a room down the hall going through the same procedure, a young father who had four small children running around the hospital the whole time I was there. One day my doctor came in and told me he probably wouldn't make it. She was visibly shaken up and grappling with how she was going to tell his wife. Well, since then there's some good news and some bad news since then.

The good news is that, although the operation was not successful, he didn't die. The bad news is that my doctor is keeping him alive with a daily pill. More bad news: The insurance co-pay for the monthly prescription is $10,000. This is not a wealthy family. They can't pay. Right now the hospital appears to be picking up the cost. But it's hard to imagine that that's going to last forever. My doctor is scrambling to figure out a way to make this work out.

The key for the rest of us is to elect more members of Congress to stand with Bernie and the others taking this seriously. Recently I spoke with Donna Edwards, a congresswoman from Maryland currently running for her state's open Senate seat, and she would certainly be an immediate co-sponsor of Bernie's bill were she to be elected to the Senate next year. Same for P.G. Stittenfeld in Ohio, where Rob Portman, as usual, is on the wrong side of the issue. "If elected to the U.S. Senate," P.G. told us, "I will always be on the side of the people, rather than the special interests, and that is why on Day 1, I would support the Medicaid Generic Drug Price Fairness Act, ensuring that generic drugs remain affordable to those who need them. Not only is a progressive vision for our health care system the right thing to do, in the case of this legislation it would also save taxpayers a billion dollars." You can help make that happen right here.

Most Americans (72%) are catching on that we're being ripped off by the Republican-enabled big drug companies. Often, the exact same drugs cost much less overseas. Is this a big enough deal for them to motivate their choice of 2016 candidates? If it is, Bernie Sanders will be the next president of the United States and Donna Edwards, Russ Feingold, P.G. Sittenfeld and Alan Grayson will be in the U.S. Senate.

Assisted-Suicide Legislation Fails In Britain But Passes In California

There are a lot of routine questions you get asked-- sometimes over and over and over-- by hospital staff. When I first started going to City of Hope to get treated for cancer, one of the questions they asked everyone every time you walked into an office is if you had been to West Africa in the last couple of months. I said "no" every time and so did everyone else. Once I told the sleepy clerk I had been in Mali and he ignored me. (I had been there a couple of years earlier, pre-whatever the disease is they were worried about; funny that I can't even remember now.) 

Another question they would ask, although in a more serious medical way, when they took your vital signs, is if you had thoughts of suicide. I always said no. I never had.

Eventually-- as the chemo, which is cumulative in effect, started taking over-- I did sometimes want to talk with someone, like Roland or Digby or my sister, if it was worth it. Was going through the treatment the right decision? I didn't know it would be so bad, so painful, so debilitating. Would I ever get better? If I did, would my life me so impaired that it wouldn't be worth living? The neuropathy, nerve damage and a side effect of Velcade, one of the chemo drugs, sometimes never goes away. Would it be worth living? Sometimes I wasn't sure-- like when I went blind one day. That was temporary, but I had no way of knowing that at the time. Or when I couldn't walk-- also temporary, but again, who knew? I felt I had had a rich, wonderful, blessed and joyful, full life. Did I need to torture myself with barbaric treatments that could leave me a wreck?

A lot of the time I was on heavy drugs and could barely think straight. And chemo-brain is... very real, real enough so that you don't know what is real and what you imagined. Did Michael come visit me in the hospital, or did I just dream it? How would I know without embarrassing us both by asking him?

I'm glad I didn't go down a path that led to suicide. The treatment was the right thing -- even though the neuropathy is still with me and I have no way of knowing what the future holds. But while I was questioning my decisions, I found out that gigantic numbers of our parents do opt to end it on their own terms. I never knew that my sisters helped our mother escape the torment of terminal cancer. And when I told one of my best friends, he told me that he had done the same thing for his mom, and that it isn't as uncommon as I imagined.

The big news out of Britain yesterday was awesome. Labour had elected Jeremy Corbyn leader-- the furthest of the four candidates from centrist shill Tony Blair. But for many Britons there was much more profound news-- and it was really bad. The House of Commons had voted 330-118 against right-to-die legislation meant to allow some terminally ill adults to end their lives with medical supervision. 74% of MPs voted against this bill, compared with 72% back in 1997.

Under the proposals, people with fewer than six months to live could have been prescribed a lethal dose of drugs, which they had to be able to take themselves. Two doctors and a High Court judge would have needed to approve each case.

Although the Archbishop of Canterbury, Justin Welby, said the bill would mean that suicide was "actively supported" instead of being viewed as a tragedy, one of his predecessors, George Carey, backed assisted dying, saying that there's nothing dignified about experiencing pain at its most awful. And while the Royal College of Nursing is neutral on the issue, the British Medical Association, the doctors' union, opposes all forms of assisted dying. PM David Cameron opposed the bill. Polling, though, shows that as many as 82% of Britons support assisted dying. 

The news on this front was much better from California, where late Friday night the state legislature passed a bill legalizing medically assisted suicide. If Governor Brown signs the bill, physicians will be allowed to prescribe life-ending drugs to Californians diagnosed as having less than six months to live. Co-author Sen. Lois Wolk (D-Davis): "Californians want us, the Legislature, to act to eliminate the needless pain and prolonged suffering of those who are dying." It passed 23-14, only one Democrat voting with the Republicans against it.

Four states-- Oregon, Washington, Montana and Vermont-- already allow physicians to prescribe life-ending medication to some patients... Brown has given little indication of his intentions.

The California bill is modeled on the law in Oregon, with several notable changes. The California law would expire after 10 years and have to be reapproved, and doctors would have to consult in private with the patient desiring to die, as part of an effort to ensure that no one would be coerced to end his or her life-- a primary concern for opponents of the law.

Leaders of the “death with dignity” movement said they hoped the passage of the California law could be a turning point.

“It allows for individual liberty and freedom, freedom of choice,” said Mark Leno, a Democrat from San Francisco who compared the issue to gay marriage.

Since Oregon approved the country’s first assisted-suicide law in 1997, supporters have struggled to expand their reach, amid opposition from religious groups, some medical organizations and lawmakers whose skepticism crosses party lines.

“I’m not going to push the old or the weak out of this world,” Senator Ted Gaines, a Republican, said on the floor. “I think that could be the unintended consequence of this legislation.”

...[B]ackers of the bill have discussed bringing the issue to the voters through a ballot measure if Mr. Brown vetoes it. A Gallup poll this year found that nearly 70 percent of Americans support physician-assisted suicide, up 10 percentage points from last year.

Friday Night

I spent much of the summer in the hospital getting stem cell transplants so that the cancer I was treated for since November-- now in remission-- doesn't come back. I still have peripheral neuropathy, but I'm feeling a lot better overall now, and my doctor at City of Hope seems astounded how rapidly I'm recuperating from the intense treatments. Brutalism's music (above) was part of my get-well therapy. I'd blast their songs, especially "Friday Night," in the hospital and the nurses would come in and dance. What more could anyone want?

Well... after a while I started wanting my hair and beard to start growing again. That's what I wanted-- that and my taste buds to start functioning again. Not that I love shaving, but after a couple of months of no facial hair growth, it starts to feel weird. I promised myself that I would switch the DownWithTyranny schedule back to five posts a day-- Ken had wisely cut it back to four while I was in the hospital-- as soon as I started shaving again. That happened yesterday-- both, the old schedule (with a first post at 6am PT and a last post at 9pm PT) and the shaving. Actually, some facial hair had started growing in on Monday, but when I washed it and dried my face with a towel, it just fell out. Now it's a little more substantial, although just a little.

Back to Brutalism's music for a moment. I know "Friday Night" sounds like dance music-- in fact, it is dance music-- but be sure to listen to the lyrics. Those lyrics are not what anyone usually hears in a dance club, as far as I know. They're subversive. But it makes sense when you know that one of the guys in the band is HuffPo writer Zach Carter.

Update from Howie

by Ken

Howie hasn't authorized me to say anything, but on July 3 he did share this information about the current stage of his treatment for mantle-cell lymphoma (a rare form of lymphoma) with his Facebook fans:

I'm in the hospital getting stem cell transplants to keep the cancer in remission. I was feeling pretty low and fatigued all day. But I just put on "Friday Night" by Brutalism and, man, I'm alive, I'm alive!! I hope I don't scare the nurses.

Back then he was on (by my reckoning) Day 5 of eight consecutive days of chemo treatments in preparation for the transplant, but on the afternoon of July 7 he posted (and got, at last count, 186 comments):

Stem cell transplants starting right now. Prayers welcome

Invoking prayers doesn't sound like Howie to me, but then, this isn't your everyday medical procedure. Just to clarify, since he began treatment for the lymphoma, he's known: (a) that the stem-cell transplant lay ahead if the rest of the treatment went well (which it did), meaning that making it this far is an extremely hopeful sign, and (b) that the procedure wasn't going to be pleasant -- to put it as mildly as possible.

As regular readers know, despite the fierce toll taken by the side effects of the previous treatments (though once they were completed, he got a measure of relief from them, as he has written, when he finally threw medical marijuana at them), his doctor kept assuring him that in terms of fighting the lymphoma, his was one of the most successful cases she's had.

Going into this round of treatment, he's had every expectation that its effects would dwarf everything that came before -- and while he's undergoing treatment he's without benefit of the medical marijuana. It appears that those expectations have been realized. However, even as he rattled off the horrors he's experiencing (Friday he wrote, "I know I haven't reached bottom yet but I'm headed there"), he says his doctor "still insists I'm in the top 1% of responses!" As you've noticed, through it all he has continued blogging (and keeping up with his blogworld contacts) and tweeting.

He's had a lot of faith in his doctor (she's a specialist in mantle cell, of which there aren't a lot), and thus far she's gotten him into remission. As he noted in his Facebook post, keeping him in remission is what the transplant is about, and the process clearly isn't for the squeamish. But at the other end, the doctor has given him reason to believe in an excellent outcome.

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How Much Good Can Medical Marijuana Do Patients?

The year 1970 saw marijuana's exit from my life-- or so I thought. (A little background here.) But because of the pain and side effects from 6 months of chemotherapy, I've started a program of medical marijuana every night before bed. It has allowed me to sleep deeply, to re-regulate my digestive system, to manage the intense pain from neuropathy and to eat again (after I lost 45 pounds really fast). Without sleep and food, you don't heal. 

Now I'm healing. And I'm helping other people who need advice and guidance in the strange twilight world of medical marijuana that our bizarre puritan society still imposes. Orlando Congresssman Alan Grayson is, of course, on the side of the angels and is well aware that marijuana can be "a valid treatment for pain... Opponents of medical marijuana," he says, "live in abject fear that someone, somewhere, might be having a good time."

This week, Time's cover story is titled The Highly Divisive, Curiously Underfunded And Strangely Promising World Of Pot Science, and I'm hoping it helps open up a much-misunderstood, and much-maligned, subject to some public scrutiny and discussion. It shocks me that conservative legislators-- primarily Republicans of course-- could be so tone deaf as to leave elderly constituents suffering, cruelly and unnecessarily, because of some outmoded notions about marijuana and hippies. Republicans have managed to block research on a drug that's offering incredible pain-management advances in states where voters have given up on conservative shitheads who just carry out the wishes of wealthy campaign donors, like Big Pharma in this case.

The most common illicit drug on the planet and one of the fastest-growing industries in America, pot remains-- surprisingly-- something of a medical mystery, thanks in part to decades of obstruction and misinformation by the federal government. Potentially groundbreaking studies on the drug’s healing powers are being done to find treatments for conditions like epilepsy, posttraumatic stress disorder (PTSD), Alzheimer’s disease, Parkinson’s disease, sickle-cell disease and multiple sclerosis.

...[D]ecades of prohibition and official misinformation continue to shape public views. “The government did not spend as much effort in finding out the facts about marijuana,” says [scientific researcher Yasmin] Hurd. “That strategy of scaring people rather than provide knowledge has made people skeptical now when they hear anything negative.

"As states now rush to legalize pot and unwind a massive criminalization effort, the federal government is trying to play catch-up on the science, with mixed success. The only federal marijuana farm, at the University of Mississippi, has recently expanded production with a $69 million grant in March, and [the head of the National Institute for Drug Abuse, Nora] Volkow has expressed a new openness to studies of marijuana’s healing potential.

...But scientists and others point out that a shift to fund the real science of pot still has a long way to go. The legacy of the war on drugs haunts the medical establishment, and federal rules still put onerous restrictions on the labs around the country that seek to work with marijuana, which remains classified among the most dangerous and least valuable drugs. “We can do studies on cocaine and morphine without a problem, because they are Schedule II,” explains Fair Vassoler, a researcher at Tufts University who has replicated Hurd’s rat experiment with synthetic pot. “But marijuana is Schedule I.”

That means that under the law, marijuana has “no medical benefit,” even though 23 states have legalized pot as medicine and NIDA acknowledges that “recent animal studies have shown that marijuana can kill certain cancer cells and reduce the size of others.” And marijuana researchers face barriers even higher than those faced by scientists studying other Schedule I drugs, like heroin and LSD. Pot studies must pass intensive review by the U.S. Public Health Service, a process that has delayed and thwarted much research for more than 15 years. The result is sometimes a catch-22 for scientists seeking to understand the drug. “The government’s research restrictions are so severe that it’s difficult to find and show the medical benefit,” says neurobiologist R. Douglas Fields, the chief of the nervous-system-development section at the National Institutes of Health (NIH).

That all may change soon. On Capitol Hill, a left-right coalition of Senators Kirsten Gillibrand of New York, Rand Paul of Kentucky and Cory Booker of New Jersey introduced a bill in March to federally legalize medical marijuana in states that have already approved it. “For far too long,” said Paul, a Republican candidate for President, “the government has enforced unnecessary laws that have restricted the ability of the medical community to determine the medicinal value of marijuana.”

...While American research on the potential harms from marijuana is booming, the U.S. continues to lag in funding investigations into the possible benefits. In the late 1990s, the U.S. and British governments commissioned separate studies of medical marijuana. The U.K. study was spurred by multiple-sclerosis patients’ using pot to calm spasticity. The U.S. study, done by the Institute of Medicine, was in response to California’s 1996 legalization of medical marijuana.

Both studies reached a similar conclusion: medical pot wasn’t a hippie’s delusion. The research showed that the stuff held real therapeutic potential for specific conditions, including epilepsy, chronic pain and glaucoma. The British responded by treating marijuana as a plant with biotech prospects. U.K. officials licensed GW Pharmaceuticals, a startup lab in Salisbury, England, to grow weed and develop cannabinoid drugs, some of which U.S. scientists like Hurd use in their research.

The Americans, meanwhile, doubled down on the war on drugs. Barry McCaffrey, Bill Clinton’s drug czar, was outraged at the Institute of Medicine’s results. “I think what the IOM report said is that smoked marijuana is harmful, particularly for those with chronic conditions,” he said–pretty much the opposite of the report’s conclusions. Nonetheless, he and then Attorney General Janet Reno vowed to prosecute medical-marijuana patients and doctors who prescribed the drug. Shortly thereafter, the U.S. Department of Health and Human Services adopted even tougher strictures against the study of marijuana as a medicine.

The federal antipot policies resulted in a strange kind of scientific trade deficit. The U.S. leads the world in studies of marijuana’s harm, but we’re net importers of data dealing with its healing potential. THC discoverer Raphael Mechoulam runs the world’s leading cannabinoid lab at the Hebrew University of Jerusalem. Spanish biologist Manuel Guzmán is doing cutting-edge work on the potential of cannabinoids to retard the growth of glioblastoma, one of the deadliest forms of brain cancer. Canada’s health agency may soon approve the world’s first clinical trial to test medical marijuana on military and police veterans with PTSD.

There are signs of change at home, though. This year, the Colorado department of public health awarded $9 million in grants for medical-marijuana research, funded with tax revenue from state-licensed pot stores. They will be among the first U.S. clinical trials to look into the effectiveness of marijuana for childhood epilepsy, irritable-bowel disease, cancer pain, PTSD and Parkinson’s disease. Dr. Kelly Knupp, a pediatric-epilepsy specialist at Children’s Hospital in Denver, will track children using high-CBD marijuana strains to calm seizures. “Some of these children can have 100 to 200 seizures a day,” Knupp says. “We’re hoping we can measure seizure frequency to see if there’s any improvement” among kids trying the cannabinoid medicine.

In the past, medical marijuana hasn't been a front-line issue for Blue America. We were happy when we found articulate spokespeople for legalization, like Beto O'Rourke (D-TX), Mark Pocan (D-WI), Jared Polis (D-CO), Alan Grayson (D-FL) and, of course, Barney Frank (D-MA), but it was never a make-or-break issue for us, like Choice, climate change or income inequality. Until now. 

Now medical marijuana legalization is a Blue America issue. We won't be endorsing candidates who oppose it. And I'm happy to report that our candidates support it. Mark Pocan, the wildly popular progressive leader from Madison, Wisconsin, warned us: "Make no mistake, our nation’s current drug policy is a broken relic of the last century. The 'War on Drugs' has cost the American taxpayer billions of dollars-- over $5 billion dollars is spent on enforcement of federal marijuana laws, including incarceration. In the past five years more than 23 states and the District of Columbia have legalized marijuana for medical or recreational use. It’s time to bring federal marijuana policy in to the 21st century. Marijuana should be legalized and regulated at the federal level. We need to stop misusing federal tax dollars to prosecute non-violent crimes."


And Pocan is far from the only younger Member who understands the ramifications of the debate. El Paso Congressman Beto O'Rourke, who wrote a book about marijuana legalization, told us that if medical marijuana "relieves pain and improves quality of life, and is already legal in one form or another in half the states, why would we stand in the way of allowing doctors to prescribe their preferred treatment when it happens to be marijuana?"

And in California, where, at least technically, medical marijuana is already legal, one of our favorite incumbents and one of our favorite challengers, respectively Ted Lieu and Lou Vince, are commonsense backers of the humane approach. "In an era of limited resources," Lieu told us today, "it is insane to have federal investigators and prosecutors devote even one second of their time to investigating or prosecuting marijuana cases. This insanity rises to new levels when medical evidence shows marijuana can be useful in treating a variety of medical conditions. The current system is also corrosive to our democracy because states are now routinely ignoring the outdated federal law that criminalizes marijuana. It is time to stop the federal criminalization of marijuana." 

Lou Vince, an ex-marine and LAPD officer who is running in CA-25 (Santa Clarita, Simi Valley and the Antelope Valley) took a very pragmatic perspective: "According to the Federal Bureau of Investigation’s Uniform Crime Report, police arrest more Americans per year on marijuana charges than the total number of arrestees for all violent crimes combined, including murder, rape, robbery and aggravated assault. Decriminalizing marijuana frees up law enforcement resources to deal with more serious crimes. Nationwide, more than 60,000 individuals are behind bars for marijuana offenses at a cost to taxpayers of $1.2 billion per year. Furthermore, Decriminalizing Marijuana will go a long way to reduce the mass incarceration problem we face in America. Marijuana prohibition laws have been used to put African Americans in handcuffs at a much higher rate than whites-- black people are three times as likely to be arrested for personal marijuana possession even though young blacks consume marijuana at lower levels than young whites."

Alex Law will have just turned 25, the minimum age for occupying a House seat, by the time he beats Donald Norcross in New Jersey's first congressional district across the river from Philly. Although he talks a lot in his campaign about protecting Medicare and Social Security benefits for seniors, his age predicts he would be more open-minded about the benefits of medical marijuana than most elderly, brain-washed politicians are. "In America," he told us this morning, "we have a creed that we are the 'Land of the Free and the Home of the Brave' but truth be told, America has the largest percentage of its population in prison of all the countries in the civilized world. Crimes related to marijuana contribute significantly to that terrible reality. The legalization of marijuana is important for our society. The war against marijuana, a substance science has proven to have real medical benefits and to be significantly less harmful than other legal substances, has contributed to bankrupting many of our states. The war on marijuana has turned many nonviolent members of society into criminals. This is also an issue of racial equality. White Americans use marijuana at the same rate as African Americans, yet an overwhelming majority of arrests are of African American males. The enforcement of the current drug laws is just as wrong as the laws themselves. It is time we make the American deed match the American creed.

"States have long been considered he laboratories of democracy," Alex continued. This issue is no exception. Colorado has legalized marijuana and seen a huge net positive from that decision. Crime is down, tax revenues are up, there is a booming industry creating new middle class jobs, and the state has seen an increase in tourism. All of this has happened without any access to capital markets. The growth would explode even more if these new companies had access to financing, an ability to take credit card payment, and an ability to expand out of state. The federal government should follow Colorado’s lead and legalize marijuana in America. As progressives, this is a policy we must endorse."

Jason Ritchie is an entrepreneur from the Seattle area and he's running for the swing seat currently held by rabid anti-pot Republican Dave Reichert. "In 1998," said Jason, "the people of my State of Washington voted to become one of the first states to legalize medical marijuana. In 2012, they again set a precedent by voting overwhelmingly to legalize marijuana commercial sales. Our State legislature responded and set up a reasonable regulatory and tax structure. This has happened without incident, except for intransigent Republicans like Rep. Dave Reichert who continue to insist their values should supersede the will of the people. His arrogant and baseless opposition only serves to marginalize him from the people he purports to represent. I strongly support marijuana legalization in Washington State and look forward to ending mass incarcerations for non-violent drug possession."

Illinois state Senator Mike Noland is the lead sponsor of a bill in the Illinois General Assembly to decriminalize the possession of small amounts of marijuana. He's running for the House seat Tammy Duckworth is giving up and when he's in Congress, he will be counted on to be another clear voice in favor of legalization of medical marijuana. This is what he told us just a few minutes ago:

The time has come to allow patients to gain access to medical marijuana. Too many people are unnecessarily suffering when there is a natural alternative that can provide much relief from pain and other debilitating symptoms.

The medical community provides more than enough justification to legalize marijuana for medical purposes.

The American Medical Association has long supported research on medical marijuana.

What is known is that the ‘high’ experienced by those who use marijuana is from only one component: Delta-9-Tetrahydrocannabinol, or THC.  What’s more, our bodies contain a natural cannabinoid that regulates health and wellness.  Indeed, our systems are pre-programmed to work with the active ingredient in marijuana, THC, which may be superior to narcotic painkillers for neuropathy, or nerve pain. Moreover, marijuana can decrease the amount of narcotics needed for pain relief. Yet the science is unequivocal, unlike narcotic painkillers, marijuana has only the same addictive potential as caffeine.

Marijuana’s main side effect is euphoria, and is often used as a sedative for cancer patients.  In fact, it is currently being studied as a treatment for various forms of cancer itself.

The medical use of marijuana has also been shown to relieve the affects of both symptoms and the pain associated with AIDS/HIV, Arthritis, Asthma, Chronic Pain, Crohn’s Disease, Epilepsy, Glaucoma and Multiple Sclerosis. So, many people are suffering unnecessarily when there is a real possibility for hope and relief.

I am proud of my past support of this cause in the Illinois Senate and plan to continue to support the science-based policy of legalized medical marijuana.

If you'd like to help elect candidates like Jason, Alex, Mike and Lou, Blue America has a page for that. Medical marijuana won't legalize itself. We need to elect more progressives to Congress-- lots more. The last time Congress voted on legalizing marijuana, in late April, the proposal was defeated 210-213. 175 Democrats and 35 Republicans voted for legalization. 8 backward Democrats and 205 Republicans-- including Dave Reichert, of course-- voted to kill the legislation.

Lipinski, one of only 8 Democrats who want to see seniors suffer with unspeakable pain rather than get a prescription from their doctor for medical marijuana

Primum Non Nocere

Over the last month or so, I've been doing a little blogging about the experience of going through chemotherapy. My doctor says the treatments have been working and I have just one more cycle of chemo before the stem cell transplants. So my doctor's very happy and I know I should be happy too. But what I'm dealing with on a day to day basis is different from what she's addressing. She's battling the cancer itself. I'm facing the side effects of the treatments. My world is a world of unrelenting pain and anguish. The side effects, as I've written about before, are a universe unto themselves.

When my doctor decided to add a drug called bortezomib (velcade) to the chemo cocktail, she told me there was a 3% chance I could wind up with nerve damage (peripheral neuropathy). 3%... good odds. I mean that's like 97% chance you won't get neuropathy. But I was one of the 3%-- and the neuropathy is far more horrible than I could have ever imagined reading about it. A good friend of mine just happens to be a specialist in neuropathy. He's written the scholarly papers about it that other doctors read. And he's been advising me. His advice doesn't make me very hopeful. The most commonly used commercial drugs that are used to treat it have poor track records. Each of them has about an equal chance to lessen the pain by 50% as it does to make the condition significantly worse. Those are bad odds. Other drugs haven't been studied thoroughly enough, primarily because it isn't profitable for Big Pharma. Yesterday he sent me a NYTimes article by Austin Frakt and Aaron Carroll, If Patients Only Knew How Often Treatments Could Harm Them. It's certainly a lesson this patient has been learning-- and fast.

If we knew more, would we opt for different kinds and amounts of health care? Despite the existence of metrics to help patients appreciate benefits and harms, a new systematic review suggests that our expectations are not consistent with the facts. Most patients overestimate the benefits of medical treatments, and underestimate the harms; because of that, they use more care.

The study, published in JAMA Internal Medicine and written by Tammy Hoffmann and Chris Del Mar, is the first to systematically review the literature on the accuracy of patients’ expectations of benefits and harms of treatment. They examined over 30 studies that assessed whether patients understood the upsides or downsides of certain treatments. To a great extent, patients didn’t.

In the 34 studies that assessed understanding of benefits, patients overestimated their potential gain in 22 of them, or 65 percent. For instance, a 2002 study published in the Journal of the National Cancer Institute asked women who had undergone prophylactic bilateral (double) mastectomy to estimate how much the procedure reduced their risk of breast cancer. On average, the women thought they had reduced that risk from 76 percent to 11 percent, an absolute risk reduction of 65 percentage points.

For the more than 80 percent of the women in the study who did not have a BRCA genetic mutation-- which drastically increases the risk of breast cancer-- the real risk before surgery of developing breast cancer was 17 percent, meaning they greatly overestimated their risk reduction. Even the women with a BRCA mutation overestimated their risk reduction, but to a lesser extent.

Another 2012 study published in the Annals of Family Medicine asked patients to estimate the benefits of screening for bowel and breast cancer, and the use of medications to prevent hip fracture and cardiovascular disease. More than two-thirds of patients overestimated the benefits of medications to prevent cardiovascular disease, and more than 80 percent overestimated the benefits of medications to prevent hip fractures.

Further, 90 percent of patients overestimated the benefits of breast cancer screening, and 94 percent overestimated the benefits of bowel cancer screening. The researchers also asked the patients to estimate the minimum reduction in bad outcomes (like fractures or deaths) they would need to achieve to find the treatment worthwhile. For three of the four studied interventions, the minimum benefit patients would accept was higher than the actual benefit.

In the 15 studies examined in the systematic review for which harms were a focus, patients underestimated potential downsides in 10 of them (67 percent). For example, a study published in 2012 in the Journal of Medical Imaging and Radiation Oncology asked patients to estimate the risks associated with a CT scan. A single CT scan exposes a patient to the same amount of radiation as 300 chest X-rays, and carries with it a 1-in-2,000 chance of inducing a fatal cancer. More than 40 percent of patients underestimated a CT’s radiation dose, and more than 60 percent of patients underestimated the risk of cancer from a CT scan.

Why do patients err in assessments of risks and benefits? One reason could be that what they know is driven by the messages they hear. Doctors, direct-to-consumer ads and the media can skew our perceptions. They tend to focus on the benefits, but rarely quantify them. Health care centers, screening advocacy programs and pharmaceutical ads all push us to talk to our doctors about getting treatment without talking about actual gains.

Doctors also aren’t always good at communicating risks. A 2013 study published in JAMA Internal Medicine found that fewer than 10 percent of patients were told about overdiagnosis and overtreatment associated with cancer screening, even though 80 percent of patients wanted to know about harms.

This study, and others, indicate that patients would opt for less care if they had more information about what they may gain or risk with treatment. Shared decision-making in which there is an open patient-physician dialogue about benefits and harms, often augmented with use of treatment decision aids, like videos, would help patients get that information. However, a majority of patients still report that they prefer to leave medical decision-making to their doctors.

It might also be the case that some patients would use more of certain types of care if they had more information. Many chronic conditions remain undermanaged and undertreated in the United States. It’s possible that people with these conditions who had more information would use more care, which could raise spending for these patients but make them better off.

There’s also an argument to be made that people who overestimate the benefits of medicine to treat some conditions are more likely to take it regularly, which might lead to better outcomes, in some cases, than would occur if these patients were better informed.

Regardless, even though some patients may benefit somewhat from being ill informed, it seems wrong to argue that we should keep them in the dark. Many of the studies in the systematic review show that people report that they would opt for less care if they better understood benefits and harms. Improved communication could better serve patients and might improve the efficiency of our health system if patients focus on getting the types of care for which the benefit outweighs risk of harm.

It’s also possible that unrealistic expectations of care help patients cope with disease or provide them with some sense of control. Feeling hopeful about one’s future is not to be dismissed. But those unrealistic expectations don’t come cheap. We should at least consider the price that we pay for being uninformed.

Ready For The Chemotherapy Side Effects?

I went to college in the middle sixties. My friends and I marked the passage of time in many ways and one involved the release of new albums by our favorite bands-- the Beatles, Stones, Pink Floyd, Who, Airplane, Big Brother, Dead, etc. When we got wind that a new Stones album, for example, was coming down the pike, some of us would shop around for the finest LSD to commemorate the event. When Between the Buttons came out in February 1967, many of us had heard it already because the U.K. company had released it a month early in the hope of stacking up some heavy import sales from America. The American company had a smart defense: two tracks that weren't included on the British release... and big ones: "Let's Spend the Night Together" and "Ruby Tuesday."

By 1967 Dean Tilley had already kicked me off the campus as a danger to other students and I was living in a house in lovely Setauket. I came to consciousness after a full night of non-stop Between the Buttons listening in a tree next to my bedroom where the turntable was set to play side one over and over. Satisfying experience! I climbed down from the tree, got in my car, drove to the campus barber shop and had my head shaved. Hippies didn't do that then. But my girlfriend, Chris, was a model and she kept her head shaved for wigs and I loved how her head felt so... what the hey.

Since then, I've grown my hair and beard out from time to time and I've kept them close-cropped as well. I don't spend much time looking in the mirror and don't obsess over how I look. When I was diagnosed with mantle cell lymphoma and decided to treat it with chemotherapy, I didn't think a lot about the side effects of the treatment. I knew-- intellectually-- they could be brutal. "Could be" often means "but probably not for me." Roland, my best friend and primary caretaker and guide through this mess, seemed most concerned that my hair would fall out. He lives in dread of cancer because of his own hair. Roland takes good care of his appearance and looks fit and at least a decade younger than he is. Losing his hair is as unthinkable for him as it is uninteresting for me. No one who sees me knows if my hair is out because of the chemo or because I shaved it. I don't know either.

But there are other side effects-- and that's the chemo. My doctor's primary concern, of course, is using the chemo to kick the butt of the cancer. She says it's working-- and working very well. The day-to-day confrontation with the side effects, on the other hand... well, that's primarily my problem, the bane of my day-to-day. And it's not hair loss.




I don't want to turn this post into a pity session about the pain and anguish of chemo side effects. It's worse than anything I ever read, but I didn't read as deeply as I probably should have. Maybe if I knew in advance what was waiting for me-- as though there is any way to know; there isn't-- I would have chosen to try curing the cancer holistically with a naturopath. Too late now. I just want to bring up one side effect: neuropathy, a nerve disease related to one of the most virulent of the chemo drugs they were giving me: Velcade (bortezomib). As usual, the explanation starts with "every person’s experience with peripheral neuropathy can be as unique as the individual." So nothing definitive. My doctor told me that only 10% of the patients who mainline the velcade get neuropathy and only 3% of the people who get a fatty tissue injection get it-- and that I would be getting the fatty tissue injections. So a 97% chance of no neuropathy. Today neuropathy consumes my life, and I've learned it sometimes lasts forever and never goes away. Below are some of the symptoms, but keep in mind that they are happening simultaneously with other unrelated side effects-- like the pain from my broken ribs and the debilitating constipation and inability to eat as well as other recurring horrors.

At first, you may notice numbness, tingling, abnormal sensations, or pain in your feet.  Some people feel like they have socks on, even though they are barefoot. Over time, this feeling spreads to your legs and hands.

You may find it harder and harder to walk. Your legs feel heavy. You have to drag yourself up the stairs. You find yourself losing your balance, not being exactly sure where your feet are; so, you stumble into things or fall. To keep your balance, you are likely to widen your way of walking, and your walking becomes less rhythmic or fluid.

As for your hands, you think you have a good grip on something, like your keys, but they drop right out of your hands. In the worst cases, you can end up in a wheelchair. Some neuropathies can be fatal.

Peripheral neuropathy symptoms and signs can vary in how they begin. Some neuropathies come on suddenly; others gradually over many years. There are three types of peripheral nerves affected, and symptoms depend on these nerves and their location:

1 Sensory Nerves: affect sensation
2 Autonomic Nerves: affect internal organ functions; and,
3 Motor Nerves: affect muscles.

Many types of peripheral neuropathy affect all three types of nerves to various degrees, but some affect only one or two.

Here are some peripheral neuropathy symptoms and warning signs as described by patients:

Weakness in the Arms or Legs

Legs: Usually caused by damage to the motor nerves, leg symptoms often include difficulty walking or running; a feeling of "heaviness" in your legs; finding it takes a lot of effort just to climb the stairs; stumbling or tiring easily. Muscle cramps may be common.

Arms: In the arms, you may find it difficult to carry groceries, open jars, turn door knobs or take care of your personal grooming. A common frustration is dropping things.

Numbness, Tingling and Pain

Sensory nerves, when damaged, can cause various symptoms. Early on, there may be spontaneous sensations, called paresthesias, which include numbness, tingling, pinching, sharp, deep stabs, electric shocks, or buzzing. These sensations are usually worse at night, and sometimes become painful and severe.

You may also experience unpleasant abnormal sensations when you touch something, sensations called dysesthesias because they are caused by stimuli.

Or, you may find yourself feeling nothing at all, in this case experiencing anesthesia, a lessening or absence of sensation.

Impaired Sense of Position

When you lose the ability to “sense” or feel your feet, you may find yourself being uncoordinated because when you walk because you are not sure about the placement of your feet. Patients may find themselves walking differently without really knowing how or why they are doing so. Chances are they have either widened their style of walking (in an unconscious effort to keep their balance) or they may be dragging their feet.

“Glove and Stocking Sensation”

This phrase describes what doctors call a patient’s odd feeling of wearing stockings or gloves or slippers when, in fact, the patient’s hands and feet are completely bare.

Symptoms of Autonomic Damage

When it occurs, autonomic nerve damage can potentially cause: a drop in blood pressure and, consequently, dizziness when standing up; intestinal difficulties such as constipation or diarrhea; sexual dysfunction; thinning of the skin (with susceptibility to bruising and poor healing), and other symptoms.

And you may-- or may not-- live an extra 12-15 years into your 70s or 80s. Worth it? Let me mention Medicare Part D, Republican health care. Three doctors prescribed a lidocaine patch for me to help control the pain and to help ween me off the horrors of hillbilly heroin (Oxycontin), the drug Republican health care prefers to push to Americans since it prevents clear thinking. Humana is my Medicare insurance career. They refused to honor the prescriptions and wasted hours and hours of my time and my doctors' time making excuses for why they were refusing to cover the lidocaine patches, even though they are proven to work and Oxy is proven to work much less well.

Medicare is one of the most wonderful things America offers us as a people. Medicare Part D-- which was pushed through by Bush and the GOP and opposed by Democrats-- is an anti-patient system that is geared to fatten the bottom line of the big pharmaceutical companies that contribute so much to political campaigns. Since 1990, Big Pharma has given Republican congressional candidates $94,240,165 and given Democratic congressional candidates $70,327,235. Because of the connection, patients suffer and die. One day the Republican Party would like to turn all of Medicare into this type of a system. How ironic is it that the elderly are the ones they trick into voting for them?

One of my doctors said I shouldn't have used so much acid in the '60s