Finally, A Shot Of Reality In The Health Care Debate

There is a terrible reality in the current national debate on health care reform that no one, regardless of whether they're conservative or liberal, wants to admit: too many treatments today are too expensive for the benefits they offer and consume resources that could, and should, be redirected to other patients. In other words, we can spend a lot on one patient or spend smaller amounts on a lot of patients, but we can't afford to spend a lot on a lot of patients. There are hard choices to make when it comes to health care, and we shouldn't pretend otherwise. The only way to afford universal health care will be to deny certain treatments to patients, especially those patients whose long-term survival is already dubious.

Let me give you an example from my own experience. From February to July, 2007, I was administered a chemotherapy "cocktail" every two weeks. It was a potent brew that included several pricey drugs such as Eloxatin, Fluorouracil, and Avastin; I had to go to St. David's Hospital in Austin for the infusion, which took several hours.

And it cost over $50,000 a month for those treatments, which turned out to be totally ineffective. My cancer returned less than two months after the end of the chemo, and that's when I put my foot down and said "no!" to any more chemo. In other words, all those treatments-----all that money-----were a complete waste. I might as well taken that $50K each month and gone to Las Vegas instead; the results would have been the same and I would have had a much better time.

My case is hardly unique. Many very expensive treatments fail more often than they work, and even when they do the net gain is measured in months instead of years. I have to wonder if that money spent for me each month should have been spent instead on programs for early detection of various diseases, childhood vaccination programs, etc. In other words, was my life really so valuable compared to the needs of other people?

Honesty compels me to say "no."

And if we're going to be honest about health care reform, we're going to have to admit we can't afford to give everyone anything and everything that might help them. We, as a nation, will have to reach a point where we say that a patient gets a treatment if there is a 60% chance it might work but a treatment will be denied if there is only a 30% chance it will work.

Some individuals will have to suffer for the good of others. There is no getting around that terrible truth.

That's why I was pleased to see the New York Times publish this piece by Peter Singer, a professor of bioethics at Princeton, in which he openly discusses the hard choices we must soon start making. Read it.

Rationing and denial of certain treatments is inevitable in the health care system. The only question is whether it will be done by the government or by the market. But it will be done, and don't fool yourself into thinking it can be avoided.

Why We're Losing The "War" On Cancer

I've repeatedly made the point here that most of the money raised to fight cancer and find a cure is, to put it bluntly but honestly, pissed away. And the New York Times agrees, as you can read at the linked article. You should read the whole thing, but here are some money quotes:

Yet the fight against cancer is going slower than most had hoped, with only small changes in the death rate in the almost 40 years since it began.

One major impediment, scientists agree, is the grant system itself. It has become a sort of jobs program, a way to keep research laboratories going year after year with the understanding that the focus will be on small projects unlikely to take significant steps toward curing cancer.

And I'll say it again: there is a critical need to redirect some cancer funding toward helping existing cancer patients. In particular, there is a desperate need for counseling, therapy, and support services for patients and their families. Almost no health insurance plans provide for such services, and the attitude of most oncologists is to deliver the bad news to a patient-----"Your cancer has metastasized to your liver"-----and then get the hell out of the exam room ASAP, leaving the patient and his/her family to cope with the crushing news.

Yes, we need to look for a cure. But a cure is a long way off even under the most optimistic scenarios. And meanwhile many cancer patients have real, serious needs that are being ignored.

I'm lucky to have Di, my family, and my friends to get me through my cancer. Many of my fellow cancer patients are not as lucky, and suffer in silence with a host of emotional and logistical problems arising from their cancers.

And that makes me madder than hell. We urgently need a honest, no-bullshit national discussion of how to deal with cancer.

I've Been Fighting The Beast For A Few Days

I often say I have my good days and my bad days when it comes to my cancer. What does that mean? "Bad days" are ones in which I can literally feel my body under assault from the cancer and my immune system fighting back. The impact on me is fatigue bordering on exhaustion, a general feeling much like the flu without the fever or chills. As the disease progresses, my bad days are getting more numerous and worse, like the recent episode that began last Friday.

It began Friday afternoon with an increase in my level of fatigue coupled with a loss of appetite; I had to force myself to eat that evening. On Saturday morning, I didn't finish one breakfast pastry and my sole food for the rest of the day was a can of tomato soup. My big activity for the day was lying around watching television and reading. On Sunday, I was determined to do something, so Di and I did some grocery shopping. The bags of groceries felt like they weighed a ton as I brought them in from the car, and I promptly took a two hour nap when I was finished.

Monday was the worst. I couldn't force myself to eat anything other than drinking some milk. At times, I was physically shaking. My cognitive abilities were scrambled; I tried to read but I was unable to concentrate and found myself re-reading the same paragraph two or three times. By afternoon, I had given up and just lay on the bed. I thought, so, this must be what it will be like when I finally die from cancer. By 8:00 pm, I had to go to bed for the evening, and as I drifted off to sleep I had this nagging feeling that maybe this was it, that perhaps this was the night I would die. I know I'm supposed to have learned some message of courage and hope, or some profound philosophical insight, that I'm supposed to share with everyone. But I didn't. All I could think of was, wow, 56 years and all that I've been through, and it might end tonight with a slow motion fade-out. As the old Peggy Lee song once asked, "Is that all there is?"

But I awoke Tuesday morning. I was very weak, yet I didn't feel as totally emptied as I did on Monday. As Tuesday progressed, my appetite returned and so did my strength. I was able to focus on things again and I could think clearly. And today I feel 1000% better than I did 48 hours ago.

Somewhere inside me, my immune system won some battle against my cancer during the past few days. Maybe it was trying to invade some new organ, or that tumor on my liver was trying to expand some more. . . . . . . . I don't know, but I'm certain a victory of sorts was achieved. And I think I got an advance preview of what it will be like to die.

All in all, a very interesting few days. Now I need to get to work and catch up on some stuff!

Still Lucky

Today was my quarterly visit to my oncologist-----Monday was the day I got all the tests done------and I'm still almost giddy at the news: there has been no significant change from my last visit in July. Yes, that tumor's still on my liver, the blood markers indicate an active tumor, but there has been no apparent growth or increase in its activity over the last three months.

I had expected bad news this time. My phenomenal luck is still working. That guy who was both laughing and wiping away tears as he left Coastal Bend Cancer Center this morning was me.

Today is Yom Kippur, and Di has been fasting since sundown yesterday. While I believe none of what she does, I also fast with her as a sign of respect for her religion and also as a token of my love for her. We will be eating out tonight at sunset to break the fast, and tonight it will also be a celebration of the incredibly good news I've been getting since my last surgery in January.

Don't waste a day you've been given, my friends; enjoy, use, and savor every one of them.

Talking About The Unspeakable

I belong to some e-mail lists and on-line discussion groups for cancer patients, and yesterday they were ablaze with links to a blog post made by Alan Sullivan, a terminal leukemia patient. Alan said some things a terminal cancer patient isn't supposed to say, or even think. Go read his comments before reading this post any further.

First off, I don't think Alan is serious about committing suicide before he gets any worse. I feel that way because he discusses using a drug overdose to end his life, and I have a pet theory that people who are genuinely serious about ending their lives do not use pills------there is always the possibility, and in many cases I think it is a hope or even expectation, of being found and revived before death occurs. No, people who are serious about killing themselves use a gun. If Alan is really looking for a swift, painless, and certain death, then he needs to buy a Smith & Wesson Model 19 .357 magnum revolver (with four or six inch barrel), load it with 158 grain hollow-point rounds, insert the barrel in his mouth, pull the trigger, and. . . . . . . C'est tout pour maintenant; au revoir, le monde! Seriously, his life would be over in a nanosecond, and he would need no one to "assist" (that is, share responsibility for what happened) in his demise.

But Alan raises a very crucial issue: we have developed the ability to sustain life well past the point where the human body was designed to die, and often such sustained "life" means prolonging someone in a vegetative state or in great pain. At what point do we------as a society, as individuals------say "enough!" and admit that further efforts would be a waste of everyone's time, energy, and emotion?

I had to answer a form of that question upon getting the news last year that my situation was irreversible. I was offered the options of "doubling down" on my treatments-----more chemo! more radiation! too bad we can't remove more of your liver!------or going to palliative treatment of my symptoms as they arose. I opted for the latter, and my first oncologist's strident opposition to my choice is why I switched to a new oncologist. Since making that decision to end those grueling chemotherapy treatments I was getting every two weeks. . . . . . . . well, I've actually had a pretty good year, all things considered. I have felt much better than I did toward the end of the chemo regime, and don't miss the side effects like extremely low white blood cell counts, sudden nosebleeds, etc. In my case, "doing less" has made my life much better. But there are those in the medical community-----like my first oncologist-----who pressure patients (and their families) to undergo any and all treatments, no matter how unlikely they are to help. For doctors like that, keeping patients alive as long as possible mutates into a variation of Evel Knievel jumping 40 buses with his motorcycle; yes, it's an impressive stunt, but what is the practical value of it? Does professional ego and pride------"look how long I kept that patient alive!"-----sometimes take precedence over what is in the best interests of the patients? I genuinely believe that was the case with my first oncologist; I strongly felt he took my decision not to continue with the aggressive course of therapy he was advocating as a personal rebuke or insult.

I've had healthy people tell me that, if they ever develop cancer or any other life-threatening condition, they will have their doctors do everything and anything to keep them alive as long as possible. I used to feel that way too, but I discovered your perspective changes radically once you experience what it's like to be really, really sick. You understand there is a huge difference between "living" and "existing." The former is worth it; the latter isn't. If you have ever awakened in the ICU of a hospital, and tried to speak but couldn't because there was a breathing tube down your throat-----and I've had that experience------then you probably wouldn't want to spend your last days "existing."

Alan also raises another sensitive issue in care of the critically ill, and that's pain management. This is an area where our perpetually screwed-up "war on drugs" rears its head; the Drug Enforcement Administration (DEA) has as much to say about how pain in terminal cancer patients is treated as do the patients' oncologists. For example, heroin is used in most of the rest of the world (such as Europe) to treat pain in cancer patients but medical use of heroin is prohibited in the United States. The "logic" behind that decision is something that only Congress could come up with: yeah, we know you're gonna be dead in three months, but we don't want you to get addicted to heroin, so instead you get to live in agony during those three months. Prescribed levels of various painkillers are monitored by the DEA, and a doctor or medical facility that is too "generous" in dosage levels for opiate-based painkillers will soon find itself under scrutiny by the DEA. To avoid such complications, doctors and facilities tend to prescribe lower levels of pain medications than many patients need. And that's because numerous politicians, in an effort to score cheap political points by showing how "tough" they are on drugs, restrict the availability of certain drugs to terminally ill patients.

When people like Alan Sullivan write about the "right to die," I get the feeling they are really writing about the right to live without excruciating pain. They want to be able to get as much as they need of any available pain relief medication. "Prolonging life" often really means "prolonging a painful life," and in many ways is not that much different from medieval tortures-----you're kept alive, but only to experience suffering. And that brings me right back to my previous point: there is a big difference between "living" and "existing."

Those of us fortunate enough to live near the border with Mexico have the option of seeking treatment in Mexican cancer clinics. These are widely ridiculed by the American medical community, and often with good reason------you really can't cure cancer with megadoses of vitamins, for example. But the reason why many Americans with terminal cancer visit such clinics has nothing to do with cures. Instead, it is because such clinics will give you as much pain medication as you need, as often as you need it, to be comfortable in your final days. And, in that respect at least, the Mexican medical community is far ahead of the American medical community and its "suffering is good for you" idiocy.

I pass no judgment on Alan Sullivan's remarks, other than to express thanks for him writing what I frankly didn't have the courage to write and for asking some unpleasant questions that needed to be raised. I think we are going to see a big growth in the number of patients with chronic long term illnesses in the years ahead-----people living in pain, and requiring daily care------and the questions about what we should do, or realistically can do, for such people will only grow. And you might find yourself having to go through some of the same thought processes I have had to go through in trying to figure out where to draw the line separating "living" from "existing." I have no idea if I've made the proper delineation between those two, and I wouldn't impose my choices on anyone else. But I've tried my best to reach an answer, and I feel comfortable with my decision.

Geez, what a heavy topic for a post! Maybe next time I should blog about selecting the proper tequila to fully enjoy the upcoming season of professional football from the Dallas Cowboys.

Report Card Time

I had my first visit with my new oncologist, Dr. Alfonso Villamil, of Coastal Bend Cancer Center in Corpus Christi, yesterday. In a nutshell, my situation is progressing "normally" (that being a very relative term when it comes to cancer) using my last visit to my Austin oncologist in April as a baseline. My blood markers for liver cancer are trending upward, as they were expected to, but otherwise things appear to be stable-----my red blood cell count is unchanged since April. Unless something happens, like a rapid drop in weight or development of pain, my next visit and round of tests will be in October. I feel very comfortable with Dr. Villamil as my oncologist; he understands my decision to forego "hail Mary" treatments with a low probability of success and instead concentrate on maximizing my functioning and comfort in daily life. There are two varieties of oncologists: 1) the type who feels you have a moral obligation to undergo any and all treatments and therapies, no matter how small the odds of success (or, at least, all therapies and treatments covered by your insurance), and 2) those who understand quality of life is the most important thing for some patients, and for such patients spending three months in a near-comotose state from chemotherapy in hopes you're one of the lucky 10% who get to live six more months is not a worthwhile bet or acceptable trade-off. Thankfully, Dr. Villamil is a type 2 oncologist. I feel I am going to have a good relationship with him.

Two Years Living With The Beast

Today marks two years as a cancer patient. Actually, it marks two years since the biopsy. I didn't get the "official" results until a few days later, but the look on the doctor's face after he performed the biopsy told me all I needed to know. Since then, I've had more operations, radiation treatments, and chemotherapy infusions than I care to recount here.

From a strictly scientific perspective, having cancer has been an interesting experience. The one thing I am convinced of is that cancer is largely genetic in origin, and no amount of prophylaxis-----eating lots of leafy green vegetables, exercising regularly, drinking a lot of fluids, etc.----is going to do you much good if you're carrying whatever genetic code that tells certain types of cells in your body to go apeshit at a particular point in your life. I'm further convinced that trying to find a cure for cancer is probably futile because to unlock the mystery of cancer will likely require us to unlock the mystery of life itself-----exactly why do some carbon molecules, but not others, start absorbing nutrients from their environment, grow in size and complexity, start replicating, and eventually develop awareness and intelligence sufficient to produce reality-based television programs? After all, cancer is nothing more than cellular mutation and growth gone amok. That's supposedly how we get new species of animals, so why I am not evolving into some sort of superman? Why am I getting weaker instead of stronger?

No one knows. If I've learned anything, it's that cancer is a very "personalized" and idiosyncratic disease. There's no such thing as a typical case of cancer nor a typical cancer patient. Having cancer is like playing blackjack with the dealer dealing from a four-deck "shoe"; it's all a matter of luck and there's really nothing you can to do to affect the outcome. Winning or losing is a lucky guess.

The hardest part of cancer is the guilt I feel. I often feel like I have done something terribly wrong by getting sick and am letting people down. The next hardest part is adjusting to the "new normal" of having cancer. When I went into the hospital on August 1, 2006 to have the original colorectal cancer removed, I told myself that I would celebrate on August 1, 2007 by climbing El Capitan, the highest mountain in Texas. It took me time to realize that I would never climb another mountain, never again go on a 10+ mile day hike, and never again have the strength to stack bales of hay six-high. I had always been proud of my body strength and endurance, and to suddenly find myself so "old" was a shock. I like to think I have adjusted, but there are times when my body feels like a prison cell. My spirit, my heart, still wants to do things like climb mountains and lift weights, but I can't. I feel trapped by my weakened body, and that feeling will probably get worse as I weaken. Cancer has also put my Di through some terrible stress and pressure, especially since she had a younger sister die from bone cancer. A lot of painful memories are being dredged up in her.

I have received incredible love and support from my family and most of my friends. A few friends have been quizzical in relating to me since I got cancer, like by never mentioning or discussing the disease with me. I don't take offense, since I suspect their behavior is motivated by their own fear of cancer and mortality. The fact that I got it relatively young obviously bothers some people in my age group; couldn't I have at least waited until I was in my seventies, when you're supposed to die?? And a lot of people get uncomfortable when I talk about my impending death. Hey, I don't like that prospect either, but refusing to admit that is what is going to happen won't delay or stop the event. I'm not looking for pity when I want to talk about my death, but I don't want to act like it's a terrible secret I must keep deeply hidden. It's the refusal to acknowledge an unpleasant truth that gives such truths their terrible power.

I know cancer patients are supposed to be noble, but I'm not. I'm no more insightful, virtuous, wise, or good than I was before; I'm just sicker. I also know I'm supposed to be full of sublime wisdom that I have learned over the past two years, but here is all I have learned: cancer sucks. That's it.

But I'm still here two years later, and I'm going to try the play the hand I'm holding as long and as well as I can. I am really, really grateful to everyone who has sent an e-mail or made a phone call to see how I am doing. You have no idea how much those mean to me, and I appreciate them beyond words.

Dodging Bullets, One At A Time

The news was relatively good from my surgery last week. Yes, I did have a new cancerous lymph node-----one as large as a walnut-----but there was no trace of cancer in the adjacent lymph nodes which were also removed. In fact, my doctors are now trying to decide whether there's any point in doing follow-up radiation treatments given how localized this new cancer was.

My doctors are now admitting what I've suspected: my cancer is really anomalous (as my surgeon said yesterday in my post-op visit, "your cancer isn't acting like it should"). All three of the tumors I've had removed have grown at an explosive rate------for example, the latest one I had removed didn't show up at all on the CT scan I had in late July of last year-----but have not invaded nearby tissues and organs. In fact, what had previously looked like a clear case of metastatic colorectal cancer may instead be a case of three separate, independent cancers (colorectal, liver, and lymphatic) breaking out within a few months of each other.

My liver tumor also has my doctors stumped. There was no trace of it in the full-body PET scan done in July, 2006 before my first surgery for the colorectal tumor. It then appeared in a September, 2006 CT scan, and was removed with RF ablation treatment in December, 2006. I underwent chemo from February to July, 2007 intended to prevent its recurrence. But in August, 2007 another CT scan showed the liver tumor had returned and was back to its original size (about as big as a golf ball). And since chemotherapy was ended last July, my liver tumor has. . . . . . . done nothing. It hasn't grown, and it has not metastasized to other organs. It's just sitting there, and it's not supposed to be doing that----it's supposed to be growing rapidly. And no one has a clue why it's behaving that way.

I've never been "typical" in my life, so it's no surprise my cancer isn't "typical" either.

Oh well, I've feel like a car that just received its 30,000 mile major service-----I'm good to go for a lot more miles. The open road beckons! We now return you to our scheduled programming. . . . .

Slice And Dice Time Again

At 8:00 am tomorrow, I'm scheduled to undergo surgery in Austin to remove a new cancerous lymph node and surrounding tissue. Depending on how much of me is sliced away, I could be home tomorrow night or hospitalized until Sunday. (Ah, the joys of having your fate entirely out of your hands!) At least I'll come home with some painkillers that would make Elvis green with envy, so my posts next week should be more entertaining than usual.

This new operation is actually routine as far as cancers go. Once cancer gets into the lymphatic system-----as mine has----you're going to be putting out "brush fires" like this for as long as you live. At least that golf ball-sized tumor on my liver is sleeping peacefully for the moment, so things could be a lot worse. . . . . . a lot worse. I'm feeling no pain, my weight has stabilized, and I'm again able to do things like stack bales of hay five-high in our horse barn. And Di is being a rock for me; I don't know what I'd do if I didn't have her in my life.

And this is for all my relatives back in South Carolina: if you really love me, you won't let Hillary beat Obama. I'm depending on all of you.

Better News Than I Expected

I underwent a battery of tests last week, including a CT scan, and today my oncologist shared the good news with me: I have a lymph node in my groin that is apparently cancerous and will need to be removed.

And I wasn't being sarcastic when I termed that "good news." The big mutha I'm concerned about, the inoperable tumor on my liver, hasn't grown at all since July. The lymph node can be removed in an outpatient procedure and the presence of a new cancerous lymph mode is no surprise----I've had four others removed so far. The fact the liver tumor is now quiescent, after its rapid growth in late 2006 and the first half of 2007, means the odds now favor me making it all the way through 2008, and the onset of complications may now be pushed back into the second half of 2008.

At this point, I'll gladly take whatever breaks I can get, and the news today is probably the best Christmas present I'll get this year.

I Got A Haircut Today

First one since April, in fact. My hair finally recovered to the point where I needed one.

My hair is still thin in spots, but there are no bald spots or patches. Even I have to look carefully to see the impact of the chemo. I look like myself again, and my now-thinner body looks "healthy slim" instead of "sickly slim."

I treasure these moments when I feel and look semi-normal again. I can almost delude myself into thinking everything is going to be okay!!

So What's My Current Medical Status?

One of the reasons I started this blog was to keep my family and friends updated on my medical condition. I know it's often awkward to ask a cancer patient how they're doing since the news is usually bad, and a lot of healthy people feel guilty for even asking, so hopefully this blog will make it easier for everyone to stay informed.

I had some follow-up tests, including a CT scan, done in July. I also got a second opinion from another oncologist. The news was bleak: despite some massive and unpleasant chemotherapy every two weeks since February, the metastasis on my liver has returned and is now larger than the original one removed last December. Because the chemo failed, it has been discontinued (I'm not too upset with that; I won't miss the fatigue, nausea, nosebleeds, etc., that accompanied the chemo!). Radiation is not an option, and the only surgical option is to remove the entire right lobe of my liver, something I immediately dismissed when I learned the mortality rate for that procedure is 30%.

In other words, there isn't much else that can be done for me going forward other than treating my symptoms as they arise. My estimated survival time is 12 to 15 months from August 2007. I should be fine for the rest of 2007 and early 2008, but I will start developing symptoms by spring 2008 and will likely be in deep do-do by the time summer 2008 rolls around.

I think the precise medical terminology for my situation is "royally screwed."

At any rate, I'm doing fine at the moment-----actually getting better as the effects of the chemo start to wear off-----and Di and I are hanging in there very well considering the circumstances. I've started work on my next book and I'm looking forward to some horseback riding and travel this fall.

My next CT scan and visit to the oncologist is scheduled for early December, so unless something extraordinary happens this will be the last medical update for a while. I'm still here, still standing, and still enjoying life; things could be a lot worse!