Thursday, August 19, 2010

Michael Jackson, chipmonks and cycles

Damn you oxycodone. Damn you to hell. Why do you have to wear off? I could swim in your warm pill-arms all day and night. But you wear off. How am I ever going to be a drug addict if you wear off?

I saw my doctor today and he literally compared me to Michael Jackson. Not the young, cute black boy. Not the older, nose-less white woman. But the dead drug addict Michael Jackson. He asked me how I was dealing with the itching since there is really no cure other than getting the Hodge to go away. I replied that I have a cocktail: take two oxycodone and three anti-itch medicine pills that don't really work. He started laughing. He said, "Well, of course that will keep you from itching. You're asleep. Ask Michael Jackson if his drugs worked for him and he'd say yes too." But funny thing is, he didn't tell me to go off my cocktail. He didn't say whether it was dangerous or not. You don't tell cancer patients they can't do something. It's not right. Heck, I might rob a bank. Who's going to convict me?

So yes, indeed, I saw my doctor. I decided to go deep. Well, my wife helped. My wife is a nurse so she has good medical sense about her. She's also a very, very sensible woman who is never afraid to tell it exactly like it is. She'd be the only American Idol judge who actually judged. She always tells me my breath stinks or I look like an idiot in that shirt. So I know I'd get straight-forward medical advice from her on this. 

All she said was, "Well, if this doesn't work, we can always try traditional chemo." And she was right. While other treatments had better success rates and this one had, um, none, I'm still willing to try something a little more experimental because I can right now. 

"Why can I?" you ask. "I mean, you were just about to die at Christmas time." Well, the truth is, I can die at any time. But during my month off without any medicine other than an occasional steroid and my trusty oxycodone cocktail, I noticed something strange. My nodes didn't feel like they were growing out of control. Oh, they were growing and I got a big one on my right side. But nothing like I had thought. And that makes senses since the previous treatment left others in a similar slow growth period.

Today the scan proved it (although I still don't believe it and won't until I see the report). But while a few are big, nothing grew more than 1 cm in one month. For those of you who aren't medical professionals, that's pretty good for someone who had no chemo during that time. Basically, they're growing but at the same pace as they were when I was on treatment. 

So I have a screw up due to me and I'm using it. Meaning, if this doesn't work and screws up, I think I still have enough body left in me that doesn't have a cancerous node attached to it that I can overcome it. 

I have to stay in New York for ten days. During which time I will get a transfusion of the medicine and then blood tests every day after that. 

It reminds me of when I worked on animation. I did it twice. One time I flew to LA and the next time I somehow managed to get a trip to Paris even though I had given the agency my two weeks notice. Animation takes a long time for the animators to render. So instead of sitting there looking at their drawings for eight hours, you'd come in in the morning (the animators would have a night shift) and then you'd say something like, "That's great but the black snake needs to form sort of a squiggly, wiggly shape." And the producer would write down, "Needs more squiggly wiggly" and then you'd leave. You'd have the whole day to yourself and then come back at the end of the day and say, "That's fine. But the squiggly wiggly is more like a swerve. and the snake looks more like a chipmonk. We need less chipmonk." And after the producer writes down, "Less chipmonk," and then underlines it, you'd leave to go to dinner and get really drunk and repeat everything in the morning. This would go on for a week or so until the client showed up. At that point, you'd talk about going back to the hotel to do work but would actually go site-seeing and the client would talk about going back to the hotel to do work but would actually go site-seeing.

Well, that's what I have ahead of me here in New York at first. But after the first ten days, it gets sort of complicated and frankly, I'm not even sure I can pull it off. 

After the ten days, I start "cycles". On days one and eight of each three week cycle, I will come back to New York in the morning, take a taxi to the transfusion center, get the medicine for an hour and then take a taxi back to the airport. Do it all in one day. It's just the opposite of squiggly wiggly. Basically once a week on two consecutive weeks, I gotta fly in and fly out. That's the only way I can do it and keep from spending a lot of money on hotel bills. 

If I look at it another way, it's easier to swallow. I already see the doc every three weeks. So this is just adding one trip. I hope it works. Heck, I hope a lot of this works. 

Thursday, August 12, 2010

McKenna and some, ah, thing.

It's Friday the 13th. Just thought I'd creep you out a little.

Sunday, August 8, 2010

The 10% rule.

To the world of academia, the University of Texas is like the New York Yankees. They have a ton of money and aren't bashful about spending it. The story of why is pretty interesting, especially for those of you who may be looking for a cheap but good out of state school.

About a century ago, the state of Texas was looking for land to put their new state school. They bought up a bunch of acres in West Texas. It was dirt cheap. Nobody wanted to live there because, well, it sucks. But politics came into play and the Texas lawmakers, many of them drunks, decided to instead put their state school in the capital of Austin. Right when they were about to sell the land in West Texas, something wonderful happened. Oil. Someone figured out that all that land was right on top of one really, really large puddle of underground oil. So instead of selling it, the drunk politicians did something very smart--they leased the land. They would get both money from a lease and part of the profit from the oil. 

Even today, when the price of oil goes up and oil companies make all that money, the University of Texas makes money, too. Tons of it. The benefit of being awash in Texas crude is that tuition is very low. While the University of Colorado in Boulder costs upwards of $50,000, you can go to Texas for a fraction of that. Sure your child can't ski in Austin but there are plenty of other pursuits to keep that gradepoint average at just below 3.0. 

The other big benefit is the school can pay ridiculously high prices to get the best talent. Like the Yankees, the UT waits for a professor to develop his or her skills elsewhere. Right when those talents peak with a breakthrough research paper, the UT comes calling and steals the prof. Another thing they do is go the free agent route to find leaders of industry and pay them a ton of money to be visiting or guest professors.

Shelby Carter was a guest professor for my Intro to Marketing class and also the best teacher I've ever had in my life. He was a bigwig for IBM, Xerox and TI and then made millions with his own company. His lectures were mindblowingly insightful and honest. Stuff you'd never get reading those insipid books. 

Professor Carter did those Bucket List Last Lectures before anyone. And he did three of them, the last three lectures in the class. His third to last one was talking about the common wisdom that seems to always come upon us about how America is losing out to other countries. At that time the newly-annointed superpower was Japan. Since then it's been China, India, Brazil, etc. His second lecture was about how all that was a bunch of bull. His point was that even though Japan was killing us in electronics and some other country was leading us at this or that and all the numbers looked bleak, it didn't matter as long as America was innovating. Innovation changed the rules of the game. Once the Japanese passed us in electronics, the computer came around. Once India passed us in computer programming, the Internet comes along. We keep winning because we simply change the game. So as long as we keep innovating and rewarding innovation, we'll keep winning. On a now predictable political tangent here but that's one reason why the "Drill baby, drill" strategy was stupid for the Republicans. It asks us to root for a game we can't win. The party of business was ironically espousing a philosophy that in the long run is bad for business. Instead, we should do what we always do and focus on changing the game. Anyhoo...

His last lecture was easily the most interesting and legendary on the campus. It talks about six or seven observations he's made in the business world and how this knowledge can help us in our jobs. With every job, I think about those observations. Heck, I think about those even more than that. 

One of his observations is the 10% rule. I could be wrong about this but my recollection is as follows. He said in any endeavor--whether it's in business, industry, war, education, sports--10% of the people involved are the true leaders influencing events and changing the world. The rest help but don't really matter much. I'll take advertising as an example. All those commercials you all like? Well, really only about a handful of people in the whole country do them. In advertising, there are only four or five agencies who are doing really fun and creative work. Within those agencies, there are only four or five people that really stand out. For an industry that literally has thousands of people working in it, there are really only a handful of people who are consistently doing the work you like and notice. With some exceptions, most everyone else is doing the stuff you don't like so much. In the show Mad Men, a very accurate recreation of advertising at the start of its greatest era, the only two doing the work and doing it well are Don Draper and Peggy. Everyone else is replaceable. The 10% rule.

This also applies to the world of doctors. I know. We are conditioned to trust our doctors, that they know the big words and all the complex biology. But I have found, as have most everyone else in my predicament, that the 10% rule applies. There are the leaders and then every doc is sort of medical wall paper to me. This comes up because I heard some bad news this week. Carrie Seanor's cousin died from lymphoma this spring. And he didn't have to. Throughout the year, Carrie would talk to me about him and I would get visibly upset as I heard what his docs were offering him as help. Definitely unfair to put Carrie in that situation but she's seen me worse. Anyway, Carrie's answer was always, well, he's at a good hospital and they sound like they are very qualified and have done this before. And that's sort of the myth of docs. Her cousin was getting bad advice. I could see he was getting bad advice because I dealt with docs who knew much more. But this myth about the sanctity of what docs know and do says that there the 10% rule doesn't apply. But it does. It's a fact of the universe. 

We are very programmed to accept mediocrity in the medical profession because we assume all those years in med school give them such unquestionable insight. Deal with a med student for one hour and you realize this is not true. Doctors spend most of their careers learning about care inside the box. They don't learn about care outside the box unless they are one of the best, years later. It's simply too dangerous for their careers to think outside the box. And the problem is, the box is old. Accepted protocol for my disease is almost thirty years old. They've been doing the same thing for thirty years. You think things have changed since then? 

So my soap box tonight is to not be bashful about questioning a doc. If a doc gets all arrogant about you, go to another doc. Also, the ability to talk to a doc to work out problems should be just as important as treatment centers and services. In reality, everyone has about the same in the big cities. But they don't all have inclusive docs. 

In my case, even the 10% docs can let you down. Three weeks ago, it was planned that I would get on a treatment as soon as my wash out period ended. But that's not going to happen because the drug company says so. Even after many emails and phone calls, my team let me fall through the cracks. Now I'm left scrambling for my health in any way possible. The best my team can offer me right now is a promise to think about ways to relieve the cancer in between treatments. 

But I doubt they'll give it much thought. In my world, patients don't come first. It's a fact of life. It was clearly like that at MD Anderson. They didn't even know I relapsed even though I sent multiple emails to them and even sent them the biopsy slides. They had the physical evidence for cripes sake. One day in January the PA, good old Wendy, called and in her humorless way, scolded me for missing my six month appointment. She's my main contact at MDA and didn't even know I relapsed. 

I am a guinea pig first. That's the way it is. If a drug company doesn't want to give me the drug, even though it can save my life, it doesn't do it until it's right for them. This happens all the time. Right now there's a hodge patient named Vaig. He's in a real bad way. He needs a drug called SGN. But no matter what his docs and a lot of other people say, the drug company won't give it to them. The drug is about to be approved by the FDA and they don't want anything, any sudden death or mishap, to get in the way of years and billions in research. Vaig is a casualty. Everybody else moves on.

It's like that with patient care, too. I really have no doctor to call if I get a sniffle. My general practitioner doesn't have the experience to understand a twice relapse, failed stem cell transplant patient. The last time I went into an emergency room, the doctor told me I only had a few months to live and the best he could do is to offer two Advil to stop the swelling. Seriously. 

Oncologists don't really want to deal with you, either. To most, the non 10%, they just don't know what to do. I was flatly turned away at Northwestern. The doc, their lead hodge doctor, told me that he didn't have anything for me (besides a really risky treatment and the same one that killed Carrie's cousin). He couldn't help me. A couple of weeks later, he called and said that maybe the Mayo clinic could help me with something. A couple of weeks later. He casually called. What does he think I was doing in those two weeks? Waiting to die?

Luckily I've planned of a way to stand up and be counted. I'm a guinea pig. Okay fine. But there aren't a lot out there like me. You need me. So if you, the drug company, want to dick me over, fine. If you the doctor aren't willing to fight for me with the drug company, okay. I'll just go to another trial and take another drug. 

I called the Mayo clinic and am awaiting word to see if I can get into their drug trial. In the meantime, I emailed my team in New York and told them, "The first treatment center to put a drug in my mouth or in my veins wins the Michael Herlehy is Human Guinea Pig Sweepstakes". No word on whether they thought it was funny. I'm funny but I'm certainly not in the top 10%.

What are you thinking?

I thought I'd take this time to answer a couple of questions that are usually on people's minds when talking to me.

The first is, "When is this jerk off going to die?" Okay, you probably frame it quite differently. More like, "How long does he have to live? He looks like death already. And doesn't he have another hat?"I'm just going to focus on the first question, which is sort of funny from my point of view because most people certainly wonder about how long I have to live but don't think it's right to ask and of those that do ask, they never get it out very smoothly. 

The answer that some docs will give is I generally have anywhere between 1-3 years from the time of relapse. However, because I relapsed within six months of my stem cell transplant, that changes things a little. One study showed that of these patients, half die before making it the other six months in the year. I didn't die. My year anniversary was June 21 or June 18th. My wife knows. I don't remember much from that time. So I didn't die but I do have an aggressive form of cancer and that means it could turn on me at any time. To sum up, the answer is one day to three years left of life and no I don't have very many hats that fit my head right. 

By the way, that's incorrect information. While I barely got a C in stats class at Texas, I can say with certainty that statistics are only snapshots and, most importantly, outdated ones. A stat is past due by its nature. Three years ago, almost all of the drugs that are now in clinical trials weren't available. So patients got sicker quicker and died with little to help them other than traditional chemo. Now the new drugs are around.

The second question is one everyone asks and don't stutter about. That is, "How am I doing?" Well, not the best. The cancer is clearly spreading and making things uncomfortable. Worse yet, relief is not in sight. I just heard from my team in New York that the drug company won't let me take the treatment until September. The team is still trying but it doesn't look likely. I'm a little peeved at my team too but I'll get into that in my next post.

After getting mad, I decided to get even. Ya see, while I can barely walk a flight of stairs and look like Hume Cronin's Grandfather, I am in high demand. Per the statistics above, there aren't a lot of me alive. Maybe about fifty people. That means there aren't a lot of people to take part in a drug company's study. I'm a hot commodity. So I decided that if the drug company can't make it sooner, they won't get me at all. I called the Mayo Clinic and am now waiting to see if I can get on one of their trials. They haven't called me back. I'll keep you posted.

Needless to say, this new chain of events has made me a little anxious, worried, more uncomfortable, more sick and flighty. That's a long time for this disease to go unchecked. I need to get something in me to at least slow this down. I had to wait before the last trial and my nodes grew. They, in fact, became the nodes that got me kicked off the trial as they continued to grow while the older ones stablized.

Those are my answers. But you can keep asking them if you want. I don't mind.