LIVING WITH MCL

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 don't usually post about all the latest advancements in lymphoma research, mostly because I don't keep up with it so much anymore (it seem's I got a little burned out doing so much of it early on), but also because there just hasn't been anything I considered to be of note. This year though, seems to be different. I've started doing a little more reading and investigating of some of the latest happenings in lymphoma/leukemia research, and while there still isn't much I'm encouraged about (anything that is truly interesting is still in early development or clinical trials), there were three reports I thought worth mentioning. The first one was a phase 3 trial, showing that  Maintenance Rituximab to be no better than Rituximab administered upon disease progression . While this may not seem so earth shattering to some, I think any research proving less is better, i.e. reducing the number and frequency of treatments, can only be beneficial, and lead to a bette...

Every time winter rolls around, I get into these funks. I have little or no energy.  All I want to do is either stay in bed, or just lay around doing nothing. Every ache and pain is magnified, and it's all I can do to muster up enough energy to drag myself out of bed and do something. Even the thought of blogging about politics, health care issues or the problems of others can't get me excited. And every year I wonder whether this time is different. I wonder whether it's my MCL that is making me feel more run down, rather than the time of year. For the last 9 years it's always turned out to be just this time of year making me feel more run down. But what if this time is different? What if it's not just the shorter days and colder temperatures? How do [will] I know?

I was talking to someone I've known for a number of years recently, and he happened to mention he only had $45 in the bank. At first I didn't believe him, but he was adamant. He's married, with one kid, and earning what I believe to be a half way decent wage, and he only has $45 in the bank?? How can that be? Sure I know there are likely many in that situation, but I felt a lot better when I thought I didn't know anyone in that position. Couple that with just learning another friend is experiencing a reemergence of his lymphoma (he was initially diagnosed after me), and is starting treatment again today, things don't seem to be boding well for the new year. Of course that got me thinking. [Something I really need to stop doing.] How is it I have been so fortunate in life, where so many others have not? How have I been able to dodge so many bullets put in my path? Even a diagnosis with a very aggressive variant of lymphoma hasn't been as devastating [yet], has it...

Two years ago, when I got my DroidX, I was all excited. The thought of being able to log on to the internet where ever I was, having access to GPS, my Kindle books, a camera etc. all in one convenient, compact device, seemed like a good idea, maybe even necessary and important. But now I'm not so sure. When I think about it, is it really worth $30 per month ($60 if you add in my wife's Droid), to have access to the internet everywhere, especially when you consider I'm already spending $40/month for wifi access at home? I hardly ever use it, except when I am at home, and I'm too lazy to go get my laptop to check whatever it is I feel is so necessary to check. And why do I need a Kindle or camera on the phone, neither of which is a good substitute for the real thing? The GPS may be about the only thing that is a good idea, but is it worth $30/month, considering how little I use it? We have become slaves to technology. We've been brain washed into thinking we need to s...

That was the title of a song written, and performed by Eric Burdon and the Animals back in 1967, which I thought was worth sharing. I can't really say that I remembered it, but that doesn't change the fact the words sure seem so much more appropriate, and poignant now [that I'm older]. Enjoy, and pay particular attention to the last verse.

I know I posted earlier about how I hate this time of year , but I always seem to be so adversely affected by this time of year, I thought it was worth reiterating. I just can't seem to get motivated to do much of anything lately. Sure I go through the motions everyday, and put on airs, but in reality it's nothing more than a facade. And the winter season has barely gotten started. There's still over 30 days of continually shorter days left before the days start getting longer, and even after that, I still have to contend with the likelihood of even colder days ahead, especially in February. (Typically the coldest month of the year.) There's also the rain to contend with. Californians (and I do consider myself a Californian) don't do good in the rain. After all, we don't get much of it, that is except for this time of year. And yesterday was one of those days. It poured. It poured so much, more of San Pedro (just west of us) is falling into the Pacific Ocean. It...

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...

WOW! 3 posts in as many days, but if you feel inundated with too much information, don't worry. I doubt it will continue. This news just couldn't wait. The results of my colonography are in, and all is well. No polyps or other extraneous stuff. Thank goodness I'm not going to have to go through that again, for at least another couple of years. Hopefully by then I will have forgotten the misery I endured. But it gets even better. A retest of my blood counts showed the approximate same drop in lymphocyte count to 55 thou/mcL (which is within normal lab variation at this lymphocyte level), but my platelets were back up to 159 thou/mcL. Not sure why the increase in platelets, other than the fact I did do a pretty intense bike ride Tuesday morning (which I'm told will cause an increase in platelets), and I cut back [very] slightly on the green tea. Regardless of the reason, it is reassuring. I guess the best thing I can do for myself is try to increase the intensity of my b...

It's seems ironic that shortly after blogging about how green tea has shown some efficacy with Chronic Lymphocytic Leukemia (CLL) my lymphocyte count would drop about 30%. After hovering around 70 to 90 thou/mcL for the past 2 years, my absolute lymphocyte count dropped to 46 thou/mcL today. Normally I would be delighted with those results, if it weren't for the fact my platelets also dropped to 128 thou/mcL (ref range 130-400) after ranging between 150 to 170 thou/mcL over the same time frame. I did experience a similar drop in platelet count last year, to 112 thou/mcL, after returning from the Aureole Wine Weekend in Vegas. It did rebound the following month, and since Edie and I attended a wine tasting of Howell Mountain [mostly] Cabernet Sauvignon's yesterday (which BTW were above average good), I'm going to assume that was the reason for the drop, and it will rebound next month. Not sure why the lymphocytes dropped. I have increased my green tea intake to between ...

I blogged on this topic about a year ago, but after watching the video below, and considering everything going on in the country now, I thought it was worth repeating. I even learned a few things I didn't know before. Admittedly it isn't much, but it is something, and 'you never know'. At the very least maybe it could help save the US Postal Service from additional cuts . Just doing my part!

The temperatures are trending lower, and daylight is in short supply. I was rudely reminded of that yesterday and today, when temperatures dropped below 50°F for the first time this fall. The lack of daylight is one thing, it's still dark at 7 AM, but couple that with the falling temperatures, and............. My only saving grace is I don't have to drive 80 miles in the dark to get to work any more, and the skies lately have been clear enough to allow the sun to shine through first thing in the morning (when it finally does come up), but that doesn't change the fact, I hate this time of year. The worst thing though, this is only the start of the season. There's at least another 4 (more likely 5) months to endure, before things start to turn around again. I just hope I have enough warm clothes and wine stocked up to make it through. BIG SIGH!

I know this topic may not sound that enticing, but bear with me. You might find it of some value. A couple of weeks ago, while sitting at the coffee shop, one of the old[er] timers, who we used to ride with, stopped by. We hadn't seen him in awhile, and were surprised to learn he was recovering from bypass surgery. He had a heart attack. WOW! A heart attack. That's not something I think about a lot, or at all for that matter. Why should I? I have Mantle Cell Lymphoma, and I've planned my life around that. Not having a heart attack. I was more interested to find out he didn't realize it at the time. It was only after he went to the doctor, because he wasn't feeling so good, and had a blood test, did he learn he had a heart attack. I've heard that before, but it never dawned on me it actually happens. The explanation he was given for the mildness of the heart attack was while he had [I think it was] 2 blocked arteries, because he was in such good physical conditio...

There used to be a time when I enjoyed going on vacation, but now not so much. I don't know if it's simply because of all the little things I hate about traveling, i.e. packing and unpacking, checking into and out of hotels, airport hassles etc. or simply the fact I don't need to travel anywhere. I already live in an area which has everything most people dream of in a vacation. I sure don't need to drive very far, or fly to all corners of the world, to get away (my justification for our latest trip to Solvang/Santa Inez). I can go to Disneyland for that, and still sleep in my own bed at the end of the day. Sure it's enlightening to experience new places, but I've seen most of the US, and I've been to France, Italy and England. I lived in Okinawa for 18 months, and vacationed in the Philippines, Taiwan, Hong Kong, Fiji (twice), Tahiti, Hawaii, and the Caribbean. I've even been to New Zealand. I don't need any more enlightening. Plus, I'm not into ...

Well, I managed to survive my colonography. I'm just not sure it's a preferred alternative to a standard colonoscopy. I still had to go through the cleansing process, and to my surprise they still had to stick this instrument (for lack of the correct term) up my butt, in order to fill my colon with air, before starting the scan. (For some reason, I didn't think I was going to have to endure all that.) The hardest part was trying to relax enough to keep from pushing the "instrument" back out, which seemed like it could easily be done. Plus, the scan had to be performed while on my stomach and back. This required me to turn over half way through the procedure, which was made more problematic by that "instrument" sticking out my backside. I can only imagine how comical this must have all been to those in attendance. All I will add is, if you don't have a good reason for a colonography, e.g. an enlarged spleen, go with a colonoscopy. I think it takes les...

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...

Admittedly it's taken me 63+ years, but after reading  James Altucher's latest blog post , I've become enlightened. Everything we've ever been taught, or told, our entire belief system, has been designed with one thing in mind, and that is to control our every action. It used to be religion was the only control mechanism (at least so I thought), but now that isn't enough. It's gone way beyond that. From the idea of home ownership and raising a family, to the necessity of getting an education. Even the design of our health care system has all been designed for one purpose, and that is to change the way we think, and inevitably control our very being and every action. It was L Ron Hubbard who said, If you really want to enslave people, tell them you are going to give them total freedom Think about it. Why is so there so much emphasize placed on the notion of getting a job, buying a home [with a big mortgage], raising a family, and building roots in a ...

Catal Restaurant in Downtown Disney (Anaheim, CA) just called to cancel a beer dinner they were having tomorrow night, for Oktoberfest, that Edie and I had reservations for. I was told only one other couple had made reservations. Can you believe it? In a county of over 3 million people there weren't 26 other people willing to pop for 50 bucks for a 5 course meal, including all the German beer you can drink, at a top notch Orange county restaurant. And there's even free parking! What is the world coming to? That's never happened to me before. It just boggles my mind.

First, my attempt at joining another bowling league on Monday was met with disappointment, as they already had enough bowlers. I knew that was a possibility, but I was hoping. Next, I discovered I had an infection in my eye, which on top of me not being able to wear my contact lens in that eye, is requiring an antibiotic and steroid treatment. Fortunately [or unfortunately depending on your perspective] I have monovision (I only look out of one eye at a time), so I should be able to cope better than most with one eye. It just isn't very comfortable. I'll know more this AM when I go for a bike ride. Then this morning, I discovered my bank charged me a $12 returned check fee because of an error they made in copying the routing number from a check I deposited using the Chase Mobile App on my Android cell phone. Hopefully that error can easily be rectified, but that will be the last time I use that app. One good thing sorta, I did get my Cruz bike back this week, but it wasn't ...

For starters, I hate people who refuse to get a flu shot, or other vaccinations for that matter. Some people think they are a conspiracy to make us sick. Others just think they don't work. That's one reason I stopped working. Two people in the office didn't believe they worked. Despite all the evidence to the contrary, they think they can get the flu from a flu shot. And this is despite the fact they always got the flu (and still came to work). I get one ever year even though most medical experts don't believe they work on the immune compromised. Mostly I depend on others getting their flu shot to protect me. Fortunately I managed to avoid the flu this past season, and I'm hoping for the same again this flu season. So everyone PLEASE get your flu shot! If not for yourself, then for me. :) I also hate riding my bike in the rain. That happened yesterday, and I was not a happy camper. It wasn't raining when I started out, and I didn't think it was supposed to r...