LIVING WITH MCL

Or is it day 6? I'm not quite sure anymore. It just seems like an eternity. Anyways, Edie is making progress. They think they've narrowed the infection down to either a bacterial or fungal infection, although they can't be entirely sure since she hasn't been able to provide a sputum sample. Plus they've been able to reduce the amount of oxygen, or something. I'm not exactly sure. She's using a different face mask now. (Just got word, 8 AM, they've switched her to a nasal cannula .) Still, the slightest bit or exertion, or if she takes her face mask off, e.g. to eat, her oxygen saturation still drops pretty quickly. Other than that, she is feeling better, and is in better spirits. 4 of her neices and nephew, from the Valley, came to visit her yesterday, so that boosted her spirits, and Saturday her other nephew, from San Francisco, will be visiting. Plus today her best friend from Ohio is flying in for the weekend to surprise her. Hopefully that ...

Despite my best intentions, I've not been able to sever myself from the myriad of message boards/discussion groups (some highlighted on the right sidebar) I belong to. I knew severing myself from the internet would be a daunting task, but I didn't think it would be that difficult when it came to the message boards. When I was first diagnosed, they were helpful. It's how I learned I likely didn't have CLL (my original diagnosis), and that my original doctor wasn't as dedicated as I would have hoped. But now I get little or no information of value. I've tried imparting some of the knowledge I've gained over the past 11+ years to some on the message boards, but I've never been the most tactful person, and some people actually take offense to some of my insights. So I rarely if ever participate anymore. So why I keep cluttering up my computer with information of so little value is beyond me? They do provide the rare blog post idea, and I have found the Multi...

I've finally come to the conclusion the US has the stupidest population in the world. The US is the only first world, rich industrialized, OECD country where access to health care is considered a privilege, and rations it based on your status in life. The US is the only country where it is believed the answer to more guns on the street, is more guns on the street, and the US is the only country where there is a belief that vaccines are a government plot to control the population , and that you can get the flu from the flu shot. No wonder the flu is reaching epidemic proportions in the US . Less than 50% (46% to be more exact) of the population has received their flu shot . So please, don't be stupid. Get your flu shot now. If not for yourself, then at least for me, and everyone else with a compromised immune system who are particularly at risk.

Did you know the US spends nearly twice as much on health care as the rest of the world, yet public spending on health care is about the same in the US  (about 8% of GDP) as it is in Canada, the UK, and the other OECD countries? The big differences is the rest of the world covers nearly 100% of their populations with that amount, while the US covers only 25% of its population. [the] key structural reform that would significantly help the economy—the labor market and also the long-run budget deficit—would be to reform the health-care sector......... I think the link of health care to the employment relationship is probably really hurting the labor market right now. At least so says  Valerie Ramey, Economist at UCSD . All this and a whole lot more from a discussion headed by Brad DeLong on  The Macroeconomics of Recessions . It's a hard read, but a there's a lot of valuable information.

A friend is admitted to the hospital. He was experiencing shortness of breath and chest pains extending down his arms. Obviously the signs of a heart attack or an impending one. Doctors do a complete work up on him. He's diagnosed with mitral valve stenosis and needs a valve replacement [maybe 2]. One problem is his kidneys aren't functioning properly, a possible complication of his diabetes, which is causing some concern to the doctors. Anyways, there's a lot of discussion amongst the doctors, and it's decided his condition isn't urgent. So he's sent home to recover, under a nurse's monitoring, until his kidney function improves, and his condition can be further evaluated. So now that I've set the stage, you can pretty much forget everything I just mentioned, because it's what comes next that is so disturbing. Upon my friend's release, he's prescribed a number of medications, one of which is a blood thinner, Lovenox, although the name of dr...

and am now safely home, free of the risk of hospital born infections (MRSA). Of course I'm not out of the woods yet, risks still abound, and I am on a plethora of meditations to help mitigate the effects. But at least I can get back to a somewhat normal routine. (Although Edie will have it a little harder taking care of me.) I'm also not much interested in sitting in front of a computer blogging, but I wanted to let everyone know I am doing fine. No one could have ever prepared me for what this operation entailed, and if they tried, I probably wouldn't have believed them. This operation was so much more difficult than I could have ever imagined. The best way to describe it would simply be to say, you do not want to have to go through this operation, and you definitely don't want to do it a second time. I will update my progress as I am able.

The reality of all this is finally starting to set in. I'm in the hospital, I'm sick, and I'm about to undergo major surgery. It pretty much hit me about 1 AM this morning. I got a roommate, and for almost an hour I had to deal with him calling for the nurse, mostly wanting something to eat, and then having to listen to him suck a can of Ensure dry with his straw, while eating grahm crackers. I knew this would likely happen, I just wasn't prepared for it to happen at 1 AM, nor for it to be so disrupting. Then, no sooner do I get back to sleep, I'm awakened at 20 minutes to 3 to draw blood. She told me I was first on her list. Gimme a break! They couldn't wait till mid morning to start drawing blood? And as if all that wasn't enough, at 5:30 AM, someone comes in, and starts asking questions of my roommate. Is this the way it is in every hospital, or just the VA? Anyways, here it is, 6:30 AM, I'm wide awake, waiting for my breakfast, and just wishing this ...

Today didn't seem as bad as yesterday. The food wasn't quite as good (I was told it never is on the weekends), but I've been blessed for a second day without a roommate (something I doubt will last much longer), and Edie kept me company most of the day, which helped the time go by a little faster. I was also able to take a shower and shave, which made me feel a little better. Still, I haven't been told anything about when they're going to operate, and I was just informed by the nurse that I'm not allowed to have the tea kettle, I use to boil water for tea, in my room. Oh well, I thought that was something that could happen, but no one said anything for a day and a half, so...... Anyways, for now I've hidden it in the bottom drawer of the nightstand, and I'll be more circumspect when I use it tomorrow. I just wish the Cardiologist, the surgeon or somebody would come by and give me some more information. I'm pretty sure this waiting and the anxiety it...

Finished reviewing copies of my angiogram and treadmill reports, and not only do I have a 90% stenosis of the distal left main coronary artery I also have a 95% ostial stenosis of the circumflex artery systolic function The latter being the reason the cardiologist couldn't stent, since according to a friend, The ostium is the opening of the artery to the aorta. You can't stent through that [because] half the stent would be lying free in the aorta. Whether they could have stented the left main artery is pretty much irrelevant since a bypass would be required regardless. It's just now it will be double bypass surgery. Yet it doesn't end there. During my treadmill it appears I experienced an ischemia abnormal ST depression seen immediate recovery 0.9 slow sIow-upstoping V3, 4.5mm horizontal in V4-V5, and 1.9mm V6->; ST depression seen during exaggerated HTN reading of 246/106 Not sure that makes a lot of sense to me, but in simpler terms, this was evidence the heart was...

For the past 10+ years I have been living with the belief Mantle Cell Lymphoma would be the likely cause of my demise. It became even more evident two years ago, when I decided to retire, due to some limitations as a result of my MCL. So never did it cross my mind, during that time, I would develop other health issues that could potentially be worse. But then 2012 happened. First it was a diagnosis of basal cell carcinoma in May , which put a crack in that belief, and now a diagnosis of coronary artery disease (CAD), with 90% blockage of the main left coronary artery, and the necessity for bypass surgery, has shattered it. On the surface that might not sound so bad. The condition was found early enough, and it can be corrected. Right? Well, not exactly. It becomes much more complicated when you have another underlying condition (Mantle Cell Lymphoma), and your health insurance/care is through the Veterans Administration (VA). I was told by the attending cardiologist, as he was describi...

Today I learned, Lance Armstrong, the most drug tested athlete in the history of sport, is being accused of doping, again . This time by the US Anti Doping Agency (USADA), who claim they have collected blood samples from him in 2009 and 2010 that were “fully consistent with blood manipulation including EPO use and/or blood transfusions.” Really! What took them so long? The French have been trying to make allegations of drug doping stick for years, ever since he won his first Tour d'France, but to no avail. And now the USADA claims to have evidence to support that claim, and they've waited almost 3 years before releasing this evidence. Needless to say, I am skeptical. Then there's this from the Congressional Budget Office (CBO): Increasing the federal excise tax on cigarettes by 50 cents per pack eventually would increase Medicare and Social Security spending, slightly. Eventually? What is the CBO suggesting here? That we should encourage smoking, because if we don't, in...

If you're one of the 27% of Americans defined as having had a serious illness, medical condition, injury, or disability requiring a lot of medical care, or who had been hospitalized overnight in the past 12 months, you probably don't think very highly of it. In a  poll conducted by the Robert Wood Johnson Foundation, NPR, and Harvard School of Public Health , of those 27% of Americans ...... more than 40 percent say that the cost of their medical care over the last 12 months has caused a “very serious” (20%) or “somewhat serious” (23%) problem for their or their family’s finances. ............One in six sick Americans say that there was a time in the past 12 months when they could not get the medical care they needed (17%). Among the sick Americans who could not receive care, 52 percent report that it was because they could not afford the needed care, and 24 percent say it was because their insurers would not pay for it . Lastly, about one in ten sick Americans (11%) report bei...

CANCELLED SURGERIES COSTING HOSPITALS MILLIONS From Anesthesiology News : Between patient no-shows and cancellations on the day of surgery, hospitals are losing millions in revenue each year, researchers have found....... Astonishing isn't it! I might have even been appalled if I weren't so disgusted. Nowhere in the article is there any discussion of the possible harm to patients due to missed surgeries. Nowhere is there any discussion of why patients may have cancelled, e.g. cost to the patient in terms of missed work and/or lost wages. Based on this article it would appear the only ones suffering here and risking harm are the health care providers. For me, this article simply further highlight how inadequate our health care system is, and how distorted our value system has become in this country, when lost "opportunity costs" (profit) is what's on the mind of health care providers the most. But then again, a fee-for-service, for-profit health care system was nev...

So Edie's free lights are continuing their upward trend, and her doctor has recommended adding Vorinostat (Zolinza) to the mix (4 - 100 mg tablets per day for two weeks, then off a week). A recently completed clinical trial  has shown it to be efficacious when combined with Velcade, and since the Velcade alone hasn't been doing the trick, this seemed like the logical alternative. The only problem with Vorinostat is it's given in pill form. That means it comes under the Medicare Part D Prescription drug plan, and this drug is not cheap. $4,945 for a 14 day supply. Fortunately we were only on the hook for about $2,300, but it could have been a lot worse. We would have been on the hook for the entire amount, if it weren't for the Affordable Care Act [AKA ObamaCare], which mandated a 50% discount once you enter the donut hole. In addition, thanks to the Affordable Care Act (ACA), the amount of the discount provided by the manufacturer is also counted towards the Out-of-Po...

You'd think yesterday's death of a police chief, 8 days from retirement in New Hampshire , would finally shock everyone to that reality [although I doubt it], and realize what a colossal waste of lives and resources the war on drugs has been for this country. Resources that would be better spent insuring everyone in this country had easy access to high quality, reasonably priced health care. We learned it in 1933, when congress finally repealed the  18th amendment which tried to prohibit the sale and use of alcohol, but did nothing more than lead to a near complete breakdown of law and authority, and expand the influence of organized crime, that to this very day still wreaks havoc and generates corruption at all levels of society. So why can't we learn it now? It's still taught in school isn't it? Why after 40+ years haven't we figured out what a colossal waste of valuable resources and lives the war on drugs has been. While the breakdown of law and authority h...

I've been told on occasion by a doctor friend of mine, after one of my posts about how poorly or depressed I'm feeling, that I should take an anti-depressant. As most of you [should] know, I have always staunchly refused to do so, but not because I didn't think they worked. It's because I felt it wasn't necessary, could do more harm than good, and I could deal with such feelings better without them. And after watching last nights 60 Minutes , I feel vindicated in my approach. There now appears to be some evidence not only supporting my belief, but also casting doubts on the efficacy of anti-depressant drugs . But why this should come as a surprise to anyone is beyond me. I have constantly been preaching on the ineffectiveness of vitamins and supplements, and how you can't boost your immune system . I've always believed it is simply a scam perpetrated by the vitamin and supplement industry to separate you from your hard earned money. Everything you need to ma...

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. ...

Can it really be called a downside? According to Joseph M. Connors, MD, Clinical Professor and Director of the BC Cancer Agency’s Centre for Lymphoid Cancer, Vancouver, British Columbia, in an article in the ASCO Post , the downside to Canadian health care is We [the Canadian health care system] don’t get to give patients treatments unless they have proven benefit, so we have an entire system devoted to examining what evidence justifies which treatments....... ..........I [Dr. Conners] cannot give a drug without evidence-based proof that the drug has efficacy and works better than the less-costly alternatives in the particular disease I’m treating. So the drawback to a centralized system is that it constrains innovative behavior, is resistant to change, and is slow to introduce new approaches. The system waits for adequate evidence before moving ahead....... Well, I'm not so sure I'd categorize that as a downside, and neither do I believe it constrains innovation. Just because...

I was thinking last night (I do that whenever I have trouble sleeping), and I've come to the realization, in the nearly 10 years since my diagnosis with MCL (when I was personally awoken to the issue of cancer), there has been a lot of research done, and too many to fathom clinical trials performed, yet there has been very little [monumental] advancement in the way we deal with and treat cancer. We've managed to map the entire human genome . We've even come close to discovering the causes of [at least one] cancer , yet there is still no cure, and our approach to treating cancer remains, as it has been for the past 50+ years, to do nothing more than infuse deadly chemicals into the body, in hopes of destroying the cancerous cells. Even one of the biggest advances recently in the treatment of lymphoma, has been the reemergence of Bendamustine , an alkylating agent developed in East Germany in the 1960's. Yeah, there have been strides made in the use of stem cell transplan...

No, that isn't a mistake in the title. Because of my enlarged spleen (which can get in the way of the scope), and the potential problems as a result of that, my doctor has obliged my request for a colonography in lieu of the standard colonoscopy. The only advantage to a colonography being, I won't have to endure the torture of having someone stick a 10 foot probe up my butt.  I still have to go through the standard cleansing process (the second most difficult part of this entire ordeal), plus if anything is discovered during the colonography, I may still have to go through the torture of a standard colonoscopy anyways. The other problem with the colonography is I will be exposed to radiation from the CT scanning machine, which is how a colonography is performed, and all the problems associated with that. At least I've not been exposed to much artificial radiation in the past 8 years, having had only one CT scan, and I think one X-ray, during that time frame. So as I sit her...