Jan 192013
 

No doubt a number of people will disagree with me here, but I don’t care. After having watched the entire Lance Armstrong interview with Oprah Winfrey, I don’t care that he doped, and I don’t care that he perpetrated that lie for so long.

What I am, is disappointed. As a fellow cancer survivor, I find it difficult to believe, having gone through what he did in fighting testicular cancer, that anyone, let alone Lance Armstrong, would ever do something as stupid as dope. I never would have. At least I don’t think I would, but having never been in the position of an elite athlete, I can only assume I would have been smarter than that.

But as a cyclist, I’m also a little biased, and despite the doping, I can’t help but marvel at what he was able to accomplish. 7 Tour d’France wins! I know how grueling the sport of cycling can be at times, even at my level, and I know how cruel life can be as well, so I can relate to some extent. Maybe even be a little sympathetic.

Maybe it’s naive of me to accept Lance’s coming clean as something noble, but I do. I also believe he was treated unfairly, and hounded far beyond what other athletes had to endure under similar situations. Some might say it was because he had reached a level greater than that of other athletes, but that doesn’t excuse anything. He still has to pay the price. I just happen to believe he is sincere when he says he is remorseful.

My only regrets are the damage he’s inflicted on the sport of cycling, and a few individuals, but mostly it’s that all the good he was able to accomplish in promoting cancer awareness, and aiding those fighting it, has now been tainted.

He was an inspiration to many of us, and now that is gone.

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Jan 272012
 

I’d bet if you took a survey in the US, you’d find most people are pretty happy with their current health care provider(s). Let’s face it, most people aren’t sick, and even when they do get sick, their own immune systems can fix most anything on its own. For most other ailments a visit to a primary care physician can easily diagnose and prescribe the necessary action to resolve the matter quickly.

So why do we even try to rate health care providers? I for one have never been a fan of health care provider ratings, because it can’t be done reliably. Health care is not an exact science. It is an art [of sorts], and trying to apply statistical measures to it are at best suspect.

Even trying to track the things that could be measured objectively, such as in patient infection rates, readmissions, etc. can’t be relied upon, because in a for-profit health care system, absent of regulation (like in the US), the incentive is to skew the data to produce positive results. And you sure can’t rely on data supplied by patients either, because most people aren’t knowledgeable enough about medicine, and are subject to personal prejudices.

Still that doesn’t stop people from trying. There’s a new website being developed by a multiple myeloma survivor, attempting to present data comparing survival rates of multiple myeloma patients by doctors, hospitals and regions in order to quantify the best in each category.

Despite the well intentioned efforts I’m sure this person has, I can’t help but ask myself why bother?

Certainly this information might be useful, but like I outlined above, you just can’t rely on the integrity of the data, especially, as in this case, when the data is being supplied directly by the doctors and hospitals being rated.

And even if you could rationalize the integrity of the data in this instance, the number of variables that exist [and not included] are endless, and difficult, if not impossible, to quantify.

For example, how far along has the disease progressed in a particular patient? How do we know if the health care providers, with the worst survival rates, weren’t just being inundated with the worst and most difficult cases? Identifying those health care providers as poor performers would not only be doing a disservice to the health care providers, but also to the patients who might steer clear of them.

And how do you quantify the aggressiveness of a disease? One thing I’ve learned throughout all this is, while there may only be one disease, there are numerous variants of each, some aggressive, and some not so agressive. Even if the doctors and hospitals were able to run all the tests necessary to categorize the aggressiveness of a disease (a cost which incidentally would be exorbitant), one has to keep in mind we are all different, and in any number of cases, those with poor prognostic indicators can perform extremely well, while those with good prognostic indicators can perform poorly.

Then there’s age to consider. How do you factor that into account? Are all 60 year olds in the same physical condition?

Just look at Joe Paterno. He died extremely quick after we first learned of his diagnosis. Do we really think he wasn’t receiving the best care? Should the hospital and doctor be penalized for that?

While I applaud the effort, simply because anything that keeps cancer survivors occupied, and not constantly worrying about their fate, has to be beneficial, I would be extremely skeptical of any of the ratings provided by this website, or any similar ones.

Posting on how to be better, more informed and proactive patients (one of the original goals of this blog), in my opinion, would be time better spent.

The only way to be sure we’re receiving the best possible care is to be knowledgeable of our disease. We’re not all blessed with being able to see a hematologist/oncologist that focuses solely on our particular disease, so asking the right questions, and supplying your doctor(s) with up to date information is absolutely vital.

Doctors are only human. They see many patients, all presenting differently. It would be naive to think any hematologist/oncologists has the ability to keep up with all the advances in the treatment of the myriad of cancers they deal with on a daily basis.

Staying informed and helping your doctor by supplying him/her with the latest information regarding your disease is something I have found every doctor I have had contact with to be very grateful for.

All you really need to know is, a proactive patient is a good patient, and the one who will likely survive the longest!

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Jul 252010
 

That sure doesn’t sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months.

But when you’re talking about cancer survival it’s an entirely different story. It is a long time. And I should know, because that’s how long it’s been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL).

That’s 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop.

But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can’t help but also think of 100 months as being a milestone. Especially considering I haven’t had any treatment, and still feel like I’m in pretty damn good shape. I even rode my bike 70 miles this morning, and managed not to get dropped [until the very end], despite a pretty rapid pace. Of course I am pretty tired right about now.

I know I’ve obsessed over this before, but I can’t stop wondering how I’ve managed to be so fortunate. Like I’ve said many times before, if I didn’t know I was sick, I wouldn’t know I was sick. And I doubt many others would think so either.

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