Marc

Feb 012012
 

Thank goodness it’s February!

It’s difficult to put into words what a lousy month January was [but I'll try :) ].

It started out with me getting sick for a week, followed by hurting my neck the next week, which I am only now 95% recovered (but at least it is getting better), accompanied by a number of other little things which I’ll just categorize as TMI.

In between all that, there was a long stretch of bitterly cold weather, for southern California that is (upper 30′s), topped off with the deaths of 3 close acquaintances. Edie’s brother being one of them, a wine drinking buddy, a second, and of course Dr. Terry Hamblin, who I give a great deal of thanks for all the help he provided me in dealing with my MCL.

I could go on and on, listing a few other things which have made this January a particularly memorable one, from a negative standpoint, but I think I’ll just leave it that, and spare you any more of my whining.

It just seems the older I get, the more emphasis I tend place on the bad things that happen, when maybe I should be focusing on the good things instead.

I guess I need to work on that, as do a lot of others!

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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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Just when I thought I was completely over being sick, and ready to resume my normal everyday [boring] routine, what happens? I hurt my neck.

I was fine up until about 4 AM this morning, when I awoke to make the last of my usual 2 or 3 nightly [routine] pit stops, and as I was walking back to bed, all of a sudden, I felt this excruciating (only slightly exaggerated) pain in my neck. It’s like I pulled a muscle, except that I didn’t do anything like that. Not even close. And the pain was almost immediate.

I laid back down in bed hoping the pain might subside, but no such luck.

So now I’m laid up again, feeling sorry for myself, alternating ice and heat, in the hopes I will be somewhat recovered by tommorrow.

I probably shouldn’t be writing this post, as it’s not doing my neck any good, but I thought by doing so, I could garner some well deserved sympathy. :)

Oh well, time for more ice!

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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.

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Isn’t it enough my wife and I are both dying of incurable diseases? Isn’t it enough I have to put up with the constant vilification of so many people, by so many other people in this country, who think they know it all? Isn’t it enough weather extremes (whatever the cause) are creating havoc and misery in many places [even southern California]. Isn’t it enough that in the past 3 months, 2 long time neighbors across the street decided to move, and rent out their houses, and the young couple 2 houses north of ours had to default on their mortgage and moved to New Mexico (the house is still empty), and now I just learned our next door neighbors have sold their home and are moving out as well, even as I write this post.

When can I just throw up my arms, and say enough is enough!

After living in the same house, in the same neighborhood for 26 years, with very few upheavals during that time, and when I finally getting to the point where both Edie and I are retired, and totally content with the way things are (despite all the vilification occurring in the rest of the country and within our government), my whole world [the neighborhood where we live] is being turned upside down.

So is this an omen of sorts? Is it telling Edie and I we need to move as well? Our neighbors across the street and next door were all retired as well.

So far the neighbors that have moved in across the street, seem quiet (I haven’t bothered to meet either of them yet), but they’re only renting, so I would expect them to be fairly transient, and who knows who’ll move in next door. Will the people who purchased the house move into it, or will they rent it out also?

As always, only time will tell what changes will come about, but I can’t imagine anything better coming of them. Things were already pretty good. I think the best we can hope for is they don’t get any worse!

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It seems my cold is finally running it’s course [at least I hope]. On Saturday it was a sore throat, Sunday I was congested and had a constantly runny nose, and yesterday was an extreme headache and a mild cough. Today the cough as progressed a little beyond mild. (I even had to resort to taking 1 Tylenol and some Hall’s throat lozenges to help ameliorate the discomfort.)

But rather than dwell on my problems any more, I thought this would be a good time to update everyone on Edie’s condition, especially since it’s been awhile (just about a year) since I last posted anything about Edie.

Since that time, Edie started on maintenance Velcade (infusions every other week). She had also been taking Biaxin on a regular basis, because her doctor told her it had shown some efficacy in treating Multiple Myeloma, but due to some side effects, she went off it to see if that would help.

About that same time, her free light chains started to rise. Whether that was coincidental, a direct effect of the Biaxin, or the maintenance Velcade, is not for certain, but regardless she restarted the Biaxin. She briefly tried [3] subcutaneous injections of Velcade, thinking that might be better than direct infusions, but did not seem to be getting the desired results, so she returned to weekly infusions of Velcade, and is finally starting to seem some positive results. Let’s just hope the trend continues!

She’s still dealing with neuropathy, and the occasional dizziness, but otherwise isn’t doing too badly. (Not sure I’d be doing as well in her condition, but …….)

On a side note, due to some problems with the Kaiser drug formulary, she has gone off Lyrica, which she has been taking for her neuropathy, and has switched to Nortriptyline. Not sure exactly what the problem is with Lyrica, as the Medicare website indicates it is on the Kaiser formulary, but whatever the case, Nortriptyline is considerably cheaper, and if it’s just as effective, everyone benefits.

Only time will tell.

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