Another year gone and I am still surviving Waldenström’s…

December 31, 2012

WordPress, the blog service that makes this site possible, tells me that among my most frequently called up topics is Waldenström’s Macroglobulinemia, WM, a non-Hodgkins lymphoma.

It’s been quite awhile since I have done a post on this so I figured it’s about time I did another.

So 2012 is almost history as I write this and it’s been another year of survival for me since being diagnosed with WM, an incurable cancer (they tell me), in 2007.

In fact, I have been doing great. Chemo over a six-month period was not fun and then trying to get my immune system back over the course of a year or so was touchy (the chemo having nearly destroyed it along with cancer cells) and those bone marrow biopsies were not fun either. (See more on immune system recovery at the very end of this post.)

WM affects different people in different ways and the symptoms if there are any noticeable ones are not the same for everyone.

Before I say how it affected me I want to say right here and now that since recovering not from WM but from the treatment, I have felt better and stronger in some respects than I felt in much of my life preceding. Part of it may just be that I am so grateful that I am alive and able to get around and work and enjoy life and that I no longer take good health for granted. But I still don’t eat the things I should much of the time. My long-distance truck driver lifestyle gets in the way. But I was led to believe, partly by my own misunderstanding, perhaps, and maybe in the way it was put to me, that I only had about five years left. Really. Well, I made it through year five anyway and there is no indication that I am going down hill. In fact I only see my oncologist about once every six months now and I am not on any prescribed medicine. But my blood tests show I still have WM. I have too much protean in my blood, however, my blood viscosity has been staying at a normal level. It had been way too thick previously.

While I did some research on WM initially, I did not stick with it, and I am not going to go over all that stuff in this post. You can find all that yourself via Google and other sources.

But I will recap what happened to me (I think a lot of the traffic on this site is from people who have just been informed they have WM or their loved ones):

Oh, and before that, I will add that WM is rare, about 1,500 diagnoses per year in the U.S.

And as I think I already said, not everyone will have the same symptoms and, in fact, many experience no symptoms and it just comes up on a routine blood test. But even if you don’t know you have it, it can cause things to happen to you and lead to death.

So what happened to me is that I had finally late in my working life landed a great paying truck driving job and was feeling great. But then I began to have tingling in my toes. And about this time I noticed a strange sore on the upper, front part of my tongue. Then we had a backyard barbecue and I bit into a big thick juicy steak but also my tongue. It began to bleed and I could not stop it. I went to the emergency room and they could do nothing, really. It did eventually subside.

(And remember, the symptoms are not always the same.)

I have to leave out some details here because it just takes up too much space, but I need to tell you that over several months I had these bleeding episodes and I must have swallowed gallons of blood in my sleep. Finally my oncologist ordered a transfusion of a blood factor into my system and that seemed to stop it all. However, I got a scare recently when I had a dental implant done. It seems that the deep digging they did in my mouth caused a resurgence of uncontrolled bleeding but this time from my gum. But it stopped within 24 hours and no trouble since. And I have had other dental work done.

Over the course of a year I was in and out of the hospital. Once I got so dehydrated from bleeding that I fainted and I actually thought I was in my death throes. I mean everything went blurry but I could still hear voices. I still had some consciousness.

I wanted to protect my good-paying job so I ended up going back to work too early. I got terribly sick while tramping around in deep snow installing snow chains on a truck. I was put back in the hospital. My immune system had not yet recovered enough.

Lost that job. Now I am back at one that pays much less for more work. But I am happy about it nonetheless. I am living and I have a job (no minor deal in this economy) and I am self-sufficient.

I have an appointment with my oncologist next week. I don’t expect any real news out of that, but if there is I’ll post something.

Several people have emailed me and some have told me how they or a loved one with WM are long-time survivors of WM. I hope I continue to be one.

Not sure what this has to do with it, but my mom is 102. I want to keep up with her.

P.s.

While I certainly do not want to be seen as offering medical advice, I do want to note this: from what I have read there seems to be two general approaches to WM treatment, aggressive and not so much (pardon the modern slang). I read somewhere a doctor advising to try not to disturb the patient’s quality of life any more than is necessary. You see, not a lot is known about this form of cancer. So it is often a guess, albeit hopefully an educated one, as to what steps are appropriate in treatment. Of course you really need to go by what the doctors say, but it would not hurt to read up on things such as the different types of chemo. I had a fairly harsh variety I think, but I understand there are milder forms now. I hope all of this has helped.

P.s. P.s.

Thought of something else. I have gone through three oncologists and left and gone back to one of them. But each one of them did something positive for me. The first one had the worst bedside manner but he saved my life (so thanks). The second got my immune system jump started after consulting with some experts in the SF Bay area. Up to that point the standard things did not work. I took a heavy dosage of Prednisone for about a week. It worked. You are always feeling up and eat like crazy. The third was easy going and gave me confidence. And now I am back to the second one. I live in a relatively rural area, so it is difficult to find doctors knowledgeable about this rare form of cancer here, but my present oncologist is willing to consult the experts — and it did work last time.

Advertisements

It seems to me publishing the names of gun owners serves no legitimate purpose…

December 30, 2012

Just because something is on the public record in a courthouse somewhere does not mean there is any need or compelling reason to publish it, even if it is perfectly legal to do so.

That is my general position on the situation in which the Journal News newspaper of White Plains, New York, a New York city suburb, is publishing the names and addresses of gun permit holders in what I guess is its readership area. It has already made one publication and plans to do more.

It is doing so ostensibly in reaction to the school shooting in Sandy Hook, Conn., where a gunman mowed down 20 first graders with a semi-automatic rifle reportedly registered to the shooter’s mother, who was also killed, along with school staff members.

I guess it’s kind of like the idea of publishing the names of known sex offenders. I think this is routinely done online by some law enforcement agencies in various jurisdictions for the benefit of parents and other members of the public.

Some news outlets have published the names of johns (customers) in connection with prostitution arrests. In that case the idea is to deter prostitution by shaming the clients.

In the White Plains case gun owners have complained that the publication is a violation of their privacy, makes them more vulnerable to gun theft by pointing out where they live, and makes it easier for criminals to locate places where they would be less likely to face armed but potential victims.

The privacy argument is not compelling to me since it is public record, although one might question the whole idea of permits.

But singling people out and publishing their names and addresses when they have not done anything wrong but with the clear implication that somehow they are a danger seems questionable if not wrong to me.

Does the action of publishing the names of gun permit holders serve a useful purpose? Is it worth the unwanted exposure of people who have not even been accused of breaking a law? And will it really make anyone any safer? The answer to me to all those questions is no.

I understand there is a movement afoot in possibly more than one jurisdiction to pass laws that would make gun ownership confidential. Now that would be wrong. We don’t need more government secrets. If there is a legitimate purpose for gun permits then the public has a right and an interest to know who holds them.

The argument that the paper should not publish the names of gun permit owners because of the danger such action poses may be not much more logical than the argument that the names should be published. On the one hand publishing the names tells criminals where to look or where to avoid but they could also obtain that information by consulting public records (although I guess that would be more time consuming and the act of doing so might lead to their own identity). On the other hand, publishing names and addresses already listed for anyone to see (albeit making it more easy) does not seem such a threat. But in the end, I fail to see a compelling reason or practical purpose in publishing the names. I doubt that doing so will make it less likely that some nut case in the future will not get a hold of a gun and shoot people. The publication will not identify mentally deranged people likely to get a hold of guns or people with criminal intent.

By reading one letter to the editor in the Journal News I got the impression that the publication of names may be seen as a weapon against the right of gun ownership. That letter was praising the publication. I don’t know what the actual motivation was, though, I admit. It could have been public interest, a move against gun ownership, or even something to gain more readership. There is freedom of the press and I fully support that. Responsibility should come along with it.

(I have not seen the actual publication of names. And I do not know if it includes a list of all types of weapons or just some or what the gun permit laws in New York State actually require.)

P.s.

As a kind of sidebar to all of this, some of those opposed to the publication of the names turned the tables by listing the names and addresses of some newspaper staffers online.

I kind of know how it feels to have the tables turned:

Many long years ago when I worked as a newspaper reporter/photographer my editor sent me out to a traffic stop on the interstate. The local cops had stopped some guys for suspicion of drugs. The local cops wanted publicity so they called the paper. I went out there. And one of the suspects asked a cop if he could see my identification. The cop agreed and told me to present it to the guy. Not knowing what to do, I showed him my driver’s license, the only ID I had. I felt strange about this. To my memory no arrest was made. Nothing, as I recall, was published. And thankfully I never heard from the suspect.


If he didn’t want to run why did he bother? And if you are too old or feeble of mind, they might think you are really not worth mending

December 29, 2012

One of Mitt Romney’s sons said his dad was a most reluctant candidate. Well why did he run? He certainly wasn’t drafted by his party. Kind of sounds like sour grapes voiced through his son.

But Romney did ironically get 47 percent of the vote. I say ironically because of course that is the number he declared as being the amount of people who would vote against him. You know, those among us who want handouts from government and to share in everyone else’s wealth.

I feel I got a dose of the mindset of some of the disgruntled voters who feel some of their neighbors might be delusional in their thinking and voted for the wrong guy, in some cases voting against their own interests. A customer in a local business was talking politics:

He was primarily commenting on Obamacare. He said what it means is that the government will be taking over the role of deciding who gets care and who does not and basically if you are elderly then it may well be decided you don’t need certain medical procedures because you are too near death anyway, and I am paraphrasing but that is what he clearly was saying.

He said that if you don’t pay for your health care but the government does it will make all the decisions. Now of course Obamacare does not directly provide for universal health care but its intention is to make health care insurance coverage available to everyone, partly through government-sponsored or administrated health care exchanges, but private enterprise is still supposed to be involved, except in cases where people have no means to pay at all.

But here is some anecdotal evidence I am aware of, and it is second hand, but I did hear it from someone I know (the incident was several years ago). She took a mentally handicapped person in for I believe a bone fracture of some kind and this someone was covered under some type of Medicaid coverage (government insurance). The doctor told the caregiver that it was not worth it to do the necessary things for a complete healing due to this handicapped person’s already existing quality of life. Okay, second hand, sounds far fetched. But probably anyone who has been around these situations knows there is truth here. And by the way, this person did get a full recovery and has full use of limbs, thanks to the insistence of the caregiver.

A doctor once pointed out to me that much of the money spent in medical care is for people late in life. We spend one heck of a lot of money to help people live marginally longer than they would otherwise in many cases (I certainly am not saying this is wrong, just relaying an observation) .

Whatever, it probably is best to have medical coverage you pay for yourself, but not everyone can afford that. With the government taking a larger role it is conceivable that private insurance could be forced out of the market.

Meanwhile the premium on the company health insurance where I work has gone up again this year and as usual the coverage has been reduced. Somehow I don’t see the magic of the free market working here and this state of affairs has been going on long before Obamacare.

It seems that the health care business defies free market rules.

The man I was talking about also despaired that possibly his own neighbors were among the culprits who voted for the wrong guy (and he had a harsher description than “wrong“).

There is really no central point to this post. I was just commenting on some things I heard or read:

A man who supposedly did not want to be president did not become president — big surprise. Everyone complains about health care coverage but no one knows how to fix it. Neighbors are suspicious that the idiots next door voted for the wrong person (that could go two ways).

P.s.

I think much of the support for not raising taxes under any circumstances on anyone in the current fiscal cliff standoff comes from the notion that raising taxes just means a more vigorous redistribution of wealth from those who work for it (or live off the earnings of others before them who did) to those who either do not or are less inclined to. Again, I am not stating my opinion here, just making an observation. I am a moderate who can see that a concentration of wealth in an ever smaller segment of society leads to grave problems for society as a whole. For one thing it threatens the existence of a middle class and the middle class is what brought us the kind of democracy we enjoy today (even if I do personally get tired of all the hand wringing over saving the middle class, as if they should not be taxed one cent more). And I believe strongly in social programs, but am just as strongly against socialism as a form of government. I read a line in a story about modern Cuba (the Castro brothers’ socialist state) where the majority of the people work for the government. A worker was quoted as saying: “We pretend to work and the government pretends to pay us”. I’d ask: “how’s that socialism working out for you?” (of course a multi-decades long embargo by the U.S. has skewed things and interfered a lot with the Cuban economy). Cuba used to be self sufficient but these days has to import most of its food, according to the article.


The big bear of a general has died…

December 28, 2012

A big bear of an army general has died. And maybe he was the last of the true fighting generals rather than the some of the air conditioned-office-bound emailing philanderers we see today.

Gen. “Stormin’ Norman” Schwarzkopf has died at age 78.

I just read and article with some of his famous quotes, but the one that stood out to me was not in that article but was in the initial news reports of his death. Well, it was a partial quote. He is reported to have referred to the now late Gen. Westmoreland as a “horse’s ass”.

With all due respects to the other late general (who got a bad rap over Vietnam), there is something about a man who tells it like it is or at least like he thinks it is.

I’m not going to write a bunch of stuff extolling the virtues of Gen. Schwarzkopf because even though I have read many great things about him I don’t really feel I know that much about him. But I think he is what we want in a general. First of all no personal scandal, and then:

Gen. Schwarzkopf was a huge man and looked like a leader (big guys always have that advantage). He had real combat experience as a junior officer in Vietnam. He saved a bunch of fellow GIs from a minefield. And he may have been our last general to actually win a war — the first Gulf War. Well, actually I have to qualify that a little. He did win his part of it if you consider his mission was to chase Saddam Hussein out of Kuwait. It was not  his fault that the powers that be got cold feet and did not take the action all the way back to Baghdad, settling for quitting while we were ahead.

And I have to say, I think I just read yesterday that Schwarzkopf was quoted as saying something to the effect that he was “lucky” that he was able to be the guy in charge in a winning battle. Be that as it may, the winning quarterback gets the glory.

And we as a nation were “lucky” to have this man in our service.

Rest in Peace General Schwarzkopf.

P.s.

One problem, if you want to call it that, is that unless we have wars our officers and enlisted men can’t get real combat experience. And it is probably not fair to criticize someone for not having real combat experience if it was never offered. Also, I have to recall that one of our greatest military leaders and a great president as well (in my estimation anyway) was Dwight Eisenhower, who served as Supreme Allied Commander in Word War II. He had no actual combat experience, even though he was in the service already during World War I. But even though wars are different now, they are just as deadly, and we should have loads of potential leaders getting experience for some future time. It’s a terrible business, but someone has to do it.


Even if most people want to avoid fiscal cliff, remember: all politics is local…

December 26, 2012

I’m guessing the reason lawmakers have not been able to come together on fiscal cliff negotiations is that even though a majority of people in the United States might want to avert the drastic measures of automatic spending cuts and raised taxes for all, all politics is local.

Each individual legislator plays to his constituents, or more to the point, he or she plays to the powers that be who help in the campaign or who have the power to excerpt pressure. Since campaigns are more about raising money than directly appealing to the masses this is what we get — gridlock on the issues.

The Republican Party used to be comfortable in being conservative and pro business interests but now is deeply divided, adding to the paralysis on the fiscal cliff issue.

(I think the current division is an outgrowth of the GOP’s program of appealing the ignorant, the bigoted, and narrow-minded interests, all in the name of simply getting votes. The program worked well in the beginning because it did get votes but now the party has reaped the whirlwind.)

Also this all may be a game of poker. The Republicans who are holding out may be bluffing. Well I guess that is a given.

And this may not be such a good metaphor but maybe at the last minute, New Year’s Eve, both sides will fold — realizing they both have a losing hand. Another stop-gap measure to kick the can down the road for someone else to deal with.

(You will recall the automatic spending cuts and tax hikes were enacted in legislation that was a result of a stalemate in budget talks that produced a lowered credit rating for the federal government, and since our government operates on borrowed money, the credit rating is crucial for survival.)

With Obama’s fairly decisive re-election victory (electoral college wise especially) it would seem he and his party, the Democrats, have the better hand.

In my posts on the subject of the fiscal cliff I have been critical of both sides. My idea is that we all have to share in getting our nation’s fiscal house in order (to the extent that such is possible), rather than do it by a class basis (the Democrats have wanted to spare the pain for the middle class and the Republicans have refused to raise taxes on the rich — although the GOP is now divided on that).

So what happens if the New Year begins with no agreement and then the automatic spending cuts, which fund social programs and lucrative government contracts for business, and the raising of taxes on virtually everyone goes into effect? As I said in my last post on the subject, maybe then there will be enough pressure from the public or from those who legislators listen to in order for something to give. So falling over the cliff may resolve the problem. I certainly do not know.

HAPPY NEW YEAR to come!


On Scrooge and Christmas transcending First Amendment…

December 24, 2012

So this is Christmas. Well, Christmas Eve almost.

I don’t have TV reception (don’t have cable). So I have not watched “A Christmas Carol” (by Charles Dickens) this year (didn’t get the DVD either).

My favorite part is when Scrooge angrily laments that he will have to give his clerk Bob Cratchit the day off — with pay! Rob a man blind! He snorts. Christmas Bah! Humbug! he swears.

I had to laugh when the bosses where I work complained that everyone wants Christmas off. We don’t get it off paid, though (I don‘t think they saw the Scrooge-related irony).

There’s always a complaint that the true meaning of Christmas, recognizing of the birth of Jesus Christ, the primary Christian prophet, has been lost in commercialism. Actually historians say Jesus (the person who so much is written about, whoever he was) was probably born on another date in another time of year. But the Christian church came to realize that it could more easily promote its new religion if it aligned its celebration of the birth of Jesus with the existing pagan observance of the Winter Solstice — at least that is what I understand.

And here’s a strange one. I was brought up in a quite non-religious household. I have never been a church goer even in my adulthood. Yet, each Christmas when my children were young I read to them the Christmas story, or birth of Jesus, out of the Holy Bible.

Just as Santa Claus and shopping for presents or hoping to get them and Christmas trees and Christmas lights and Frosty the Snowman were all part of Christmas to me as a kid, so was that tale of the birth of Jesus.

As I recall it was re-enacted at public school programs. There were no complaints, as far as I knew. I suppose that does not mean it did not bother some people. Maybe Jewish people, of who I knew few, were not too keen on it. I don’t really know. My father was a non-believer but I don’t think it bothered him. He had his beliefs or non beliefs, but he was always live and let live.

I just enjoyed reading the story to the kids and maybe thought they ought to at least be exposed to part of our culture. Yes, whether you are Christian or not, Jesus is part of the culture in this country. Actually it’s just kind of like literature. If you are up on it then you have a fuller life because, among other things, you don’t feel left out when people mention the subject. And so much of our history and ways of doing things are connected to this story.

And I used to see hypocrisy in all the commercialism around Christmas, but really it’s just about celebration, and as it happens people often spend money in celebrations.

Oh, and these people who object to references to Christmas and Jesus and such in public places or at public schools — get a life! Yes, there is or may be technically a First Amendment separation of church and state conflict there and there are people of other faiths and of non-faiths, but who is really hurt? It could get out of hand if programs, particularly in public schools, got too much into the religious aspect. But as long as those involved use good sense and just have plays with mangers and shepherds in the field — hey it’s just a story about Christmas, a traditional celebration in this nation. Who has ever been hurt by it? I think Christmas transcends the First Amendment.

There could be an argument but then we have to have Islamic celebrations and so on in schools — and I have read that somewhere they do or at least have school holidays based on Islamic beliefs now (don’t know too much about that). Well maybe we could have programs recognizing various religions in communities where that is appropriate. School boards elected to represent their respective constituents can figure that out — no need to bother the Supreme Court.

Yes, so this is Christmas. And I am not working and actually I am getting paid because I’m taking a paid vacation.

And I can just here the bosses now: “Bah! Humbug!”

P.s.

In the interests of fairness and keeping my job, I have to say, and I am sincere, that my bosses are not really Scrooges, but I am an over-the-road trucker and in this business you get paid primarily on the basis of those wheels rolling — and not only do I get paid that way, so does everyone else connected with it really. And loads do move on or around Christmas. You know, that’s how everyone gets all that stuff, from basics to luxuries.

———————–

So this is Christmas

And what have you done?

Another year over

And a new one just begun

By John Lennon


Sliding off the fiscal cliff may be the only answer in fiscal crisis…

December 22, 2012

And perhaps the best way to resolve the fiscal cliff dilemma is to tumble over it and see what happens. The deadline for action is Jan. 1.

If automatic spending cuts go into place, cuts neither Republicans nor Democrats will like, not to mention the general public, and virtually everyone’s taxes are raised, then maybe there will be some public pressure to do something. So far, I have not really noticed any public pressure.

The problem is that both sides are wrong. You can’t on the one hand just keep spending and spending and even at an ever higher rate while revenues diminish. And you can’t climb out of a financial hole without raising revenue.

I think most economic experts say that simply cutting alone won’t work.

President Obama’s decisive re-election (although Romney did get 47 percent) seems to indicate that the majority of the electorate does not want to scrap public spending, probably in particular on things like Social Security and Medicare.

Meanwhile, a story teaser in the Wall Street Journal (I don’t subscribe so sometimes I just get the headline or first paragraphs) said that the Republicans can’t come to an agreement on fiscal cliff talks because much of their membership refuses to do anything that would lead to increasing taxes on the rich (“the rich” I think has a flexible definition, but really in this country if you make more than $100,000 per year, you are at least approaching rich, even though others make millions and billions).

And I personally think the refusal to hike taxes on the rich is senseless, but maybe no more senseless than refusing to hike taxes on the middle class.

Let’s simplify the tax code first, reducing  the myriad of loopholes and gimmicks, and then maybe we won’t have to raise the rates as much as we might have to otherwise, and maybe, just maybe, there might be more equity in the tax codes and hopefully more support of the whole system.

And let’s restore manufacturing as our base. The service economy and living on housing bubbles just didn’t work.

P.s.

Probably there will be a last-minute stop-gap action. That of course will not solve the problem. Then again, it will not hurt, I wouldn’t think. It just all seems so pointless, or futile.

 

P.s. P.s.

Oh, and that thing about taxing the rich sometimes hits small businesses unfairly because they file their taxes as individuals is confusing to me. I mean maybe small businesses that do that need a better accountant. There must be some advantage to them by incorporating or going to some other such measure. But then again, what do I know. Nothing.