Mar 302012
 

I had a few moments, so I thought I’d share a few thoughts that were on my mind this morning (for whatever reason), as I contemplated the ten years since my diagnosis with MCL.

How is it possible I’ve managed to survive all this time without ever having received any treatment, and so many others have not? Am I so unique? Are there others who have gone as long or longer? I sure would like to know.

Everybody has good moments and bad moments, but it’s the ability to learn from those bad moments, and not dwell on them, that separates greatness from not so great.

And finally, with all the talk about the Supreme Courts deliberations over the Affordable Care Act (AKA Obamacare), I was wondering. Why is it unconstitutional to force people to purchase health insurance, yet not unconstitutional to force health care providers to provide free health care to individuals in cases of emergency (reference the EMTALA)? Is it because emergency room care isn’t health care, as someone recently told me?

Sorry! But you should all should know by now I can’t resist the occasional political rant. I just find that not as easy to walk away from as I would hope. :)

 

 Posted by at 7:04 am  Tagged with:
Feb 242012
 

Just received the results of my most recent blood test, and they included results for IGA, IGG, and IGM. I went back and reviewed all my past test results, in order to compare, and couldn’t find any indication of that being checked before.

My CBC, Beta2 Microglobulin, LDH etc. were basically where they’ve been for the past few years, and even my IGG was normal – 1458 (694-1618 ref range). The problem is my IGA is low – 68 (81-463 ref range), and my IGM is high – 332 (48-271 ref range).

I’ve been going along just fine without knowing this information, and I don’t feel any different than before, so I’d hate to become alarmed by something that isn’t so unusual for someone in my situation.

It’s as if I don’t have enough to worry about, now I have another reason to be concerned.

I guess it truly can be said, too much information isn’t always a good thing. At this point I almost wish I didn’t know the results. I think I’d be feeling a lot better about now.

It used to be I could write to Dr. Hamblin, and he would put me at ease, but that era has sadly passed. :(

Oh well, such is life. [BIG SIGH]

Feb 132012
 

The reason being, everything comes easy to superstars, and they expect everyone to perform at the level they performed. They don’t understand the problems and pitfalls of doing what they know best, because they’ve never experienced any, so they have great difficulty teaching others how to avoid something they know little about.

This is true not only in sports. It’s true in all walks of life, and in everything we do. [Even politics]

I, for one, find it difficult to understand how patients can unquestionably listen to their doctor, and jump into treatment right away, without considering all the consequences, and at least doing some research into all the possible options. I find it hard to believe any diagnosis of cancer is so advanced there isn’t even sufficient time to seek a second opinion.

And maybe 4 days was enough for the person who posted on Facebook, that her husband was diagnosed with lymphoma last Monday, and started treatment that Friday, to have done all the research, and seek a second opinion. I just don’t think so.

I don’t think so because it took me a lot longer than 4 days (more than a year) to research my lymphoma, and seek a 2nd and 3rd opinion, before finally deciding not to seek any treatment right away. A decision, which incidentally might have been a lot different, had I only listened to my first doctors, and even some other, early advice from some very learned individuals in the field of lymphoma.

So why doesn’t everyone think like me? Am I one of those superstars that everything comes easy to? Do I fail to understand that everyone doesn’t see the world as I do, nor have the where with all to spend the time to do the research necessary to be able to decide on the best approach? [Or their conditions may be more dire than mine.]

I know I’ve tried to teach some of those concepts with postings to my blog, and I’m not trying to tell people that early treatment isn’t the best approach, because in many case it may be the only choice. I just wish people would spend a little more time thinking [researching] before making hasty decisions that may affect them for many years down the road.

That might actually be good advice for everyone, even for those who are healthy, and not facing a life threatening disease.

 Posted by at 9:58 am
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!

Jan 212012
 

After a recent email, and several exchanges on a few of the message boards I frequent, I felt is was imperative of me to reiterate my stance on the use of vitamins, supplements and herbal remedies.

As long time readers of my blog may already know, I am against the taking of all vitamins, supplements and herbal remedies. But I wasn’t always that way. Prior to my diagnosis I truly believed the taking of Vitamin C, E, Calcium, fish oil (and a few other items) were essential for good health. Obviously that didn’t work, and now I’m even of the opinion it was that belief which led to my diagnosis of MCL.

That’s not to say all of the hype is a complete fabrication. After all, I am a firm believer in the efficacy of EGCG, a by product of green tea. Nor am I saying maintaining proper nutrition isn’t important, because it definitely is. What I am saying is, if you can’t get it naturally, it’s probably not worth getting. And that’s a policy I adhere to religiously, taking no artificially produced vitamins, supplements or herbal remedies.

There have been no clinical studies authenticating or substantiating any of the claims made for the numerous supplements sold on the market. In my opinion, all the hype about many [most, all] of these products is simply a scam by the pharmaceutical and supplement industries to instill fear into the minds of consumers, and separate them from their money.

Worst of all, the supplement industry is not regulated. So buyer beware. Even if the claims were substantiated, there is no guarantee you’re getting what you expect when you purchase any of those products online or at the market.

Even Dr Oz, who I consider the biggest shill for the pharmaceutical and supplement industries, warned about this on a recent show.

So even if you don’t want to take my word for it, at least take Dr. Oz’s.

Jan 072012
 

It’s even more so when you’re immune compromised, such as myself, because I can never be sure if my immune system is up to the task of fighting off the illness. Plus I can’t be sure if I’ve just contracted the run of the mill cold, flu or whatever, or if it’s the result of my MCL.

I find myself spending an inordinate amount of time dwelling on how I feel, how soon I’m going to start feeling better, and constantly searching for any evidence of my MCL acting up, such as inspecting for enlarged nodes under my neck and arms.

And that is exactly what I am going through right now.  I started feeling more run down than usual about midweek, but after having a cup of hot tea with lemon, I felt much better. Unfortunately, it didn’t last that long, and today my throat is much sorer, I have a minor headache, and I’m just feeling generally bad.

I’ve always managed to recover relatively quickly, without any long lasting side effects, whenever I’ve gotten sick in the past, so I’m hoping this time will be no different. I only wish I knew in advance how it was going to turn out. It would certainly relieve a lot of stress.

There is one upside though, at least I picked a good time to get sick. It’s heavily overcast this morning, and will likely stay that way most of the day, plus the NFL playoffs begin today, so at least I’ll have something to occupy my mind most of the weekend, should I not feel any better tomorrow.

Of course if the Steelers lose tomorrow afternoon, that could result in another set of issues.

 Posted by at 9:09 am