LIVING WITH MCL

It must be true. I learned it on the internet. I don't like curly fries. I just wonder what else I don't know about myself, and what liking the following TED talk says about me. This is some pretty scary stuff.

Well, I had to wait 5 weeks, but I finally had the cataract in my right eye removed. The surgery didn't seem to go as smoothly as the the surgery on my left eye though. I had a little more discomfort after surgery, and my vision doesn't seem as good in the right eye, although I checked 20/25 in both eyes when I went to see the doctor for my follow up appointment the next day, and things are improving. Not sure what I was expecting, as it's still a 10 fold improvement over what I had been experiencing, so I'm not complaining to profusely. It's hard to believe I went as long as I did without surgery. It's like I had been seeing everything in standard definition (SD) all this time, and now I'm viewing everything in HD (high definition). There's still about 2 more weeks of recovery, having to wear an eye shield at bed time, and putting 3 different eye drops, 4X a day, in my eye, but I think I can handle it. After all I've waited this long. What's ano...

Do you believe everything you read on the internet? What if it comes in the form of an anonymous email? Do you give it more or less credence? Or maybe you give it the same credence. I don't give anonymous emails a passing thought, even when they come from friends or relatives. If there was any legitimacy to a particular position or theory, the person responsible should be proud to put their name to it? Unfortunately, not everyone believes as I do. Too many people are easily manipulated by confusing and misleading logic, delivered by slick individuals, whose only goal is to deceive, enrage and frighten others into doing their bidding. But then again, if you equate the use of money to free speech, and believe corporations are people, vitamins and supplements are food, and the stock market is anything other than the equivalent of a rigged roulette wheel or carnival game, then I guess you'll pretty much believe anything. I only hope the next time you get some anonymous email, or re...

I just realized my 12 year anniversary, of my diagnosis with MCL, has past with nary a notice. I usually commemorate that day (3/26/2002) with a post about how fortunate I've been to have survived so long, especially since I've managed to do so without any conventional (or unconventional) treatment, but as of late, I just haven't been that motivated to post anything. A few occurrences have come up that I could have written about, but that would mostly have been simply to fill space, and I didn't want to do that. Now that spring has arrived, and summer is just around the corner, maybe I'll be more inclined to post some innocuous thoughts, but for now, I'll just continue to lay back and bask in the realization that I've been through a great deal over the past several years, and I'm none the worse for wear. At least not too much! A friend once told me, I wold likely die of something other than my lymphoma, and it's only now that I'm beginning to rea...

And WOW is there a dramatic difference. It's not only that the Interocular Lens , implanted in my eye to replace the cataract, has improved my distance vision far beyond what I can remember, but the colors are so much more vibrant now. I never knew (or at least don't remember) how white,  the color white can be. The big problem now is waiting the 7 weeks for the cataract in my other eye to be removed.  

Nearly a month to be exact. And it's not be because I haven't had anything to say, because there has been been plenty. I just haven't been motivated. I've been going through a terrible funk lately. At first I thought it was the weather, but I'm beginning to discount that. We did have a few cold days in December and January, but February is proving to be pretty nice (for February that is). And if you listen to the news at all, you know there hasn't been much rain here in LA for quite awhile I can't blame it on the iron either, since I stopped taking that. There is still the Lipitor to blame, but I'm not about to stop taking it just yet. Plus I finally got my cataract surgery scheduled for March 10th, so I should be happy, but on the downside, my lymphocyte count has been steadily increasing over the past few months, almost back to its peak of around 4 years ago. So here I sit, looking for some sympathy I suppose, and hoping it's not my MCL starting to...

I find it truly amazing that it was my primary care physician that had the foresight to send me to the ophthalmologist for evaluation for cataracts, rather than the optometrist I saw for evaluation of my rapidly changing eyesight and prevalence for infections. It's like I've always said, it's not the health care system that determines your quality of care, but rather the doctors. The only problem being there are good doctors and bad doctors, and it's not always so easy to determine which are which. Anyways, as a result of the visit to the ophthalmologist I've been approved for cataract surgery. It's just not going to happen as soon as I would hope. (I'm looking at early March.) Apparently there are few other people seeking cataract surgery as well. (And here I thought I was the only one with such a problem.) I find it hard to believe that many people are in need of cataract surgery, but I was also told there is a possibility I could get in sooner, as patient...

Despite the iron increasing my hemoglobin, it didn't make me feel better. I didn't have more energy. I actually think I had less energy, and felt better when my hemoglobin was at 11 g/dL. (Of course the [cold] weather may have something to do with my lethargy as well.) Not only that, but it's increased my awareness of my spleen, and I think it's the cause of the increased occurrence of eye infections [inflammations, irritations, or whatever] I've been experiencing. I do have an appointment with an Ophthalmologist tomorrow, to see what he has to say about my eye irritations. I'm hoping I can talk him into cataract surgery, at least on my left eye which has been the most problematic, and I can eliminate the need for contact lenses, which may also be contributing to my problems. After that, who knows? I may start taking iron again. Stranger things have happened, but until I start feeling better, that's not gonna happen. This year is just not starting out as I h...

It's that time of year again. It's flu season, and flu cases are  on the rise in many parts of the country . So if you didn't have the foresight to get your flu shot earlier, it's not too late to get it now. Get it before you become a statistic, and if not for yourself, get it for me, and others like me. Get it for those with compromised immune systems, who are more susceptible to contracting all sorts of illnesses. More importantly, remember to wash your hands frequently (it is likely the single biggest factor to reducing your potential for getting the flu), don't touch your face, especially around the eyes, refrain from shaking hands, without being impolite, and don't go to work if you're feeling sick. We'll all be better off for it.

OK, so it hasn't really been that bad a year. I'm not sure how anyone could claim it was a bad year after surviving open heart surgery the previous one? That is except for me of course. :) Despite being mostly back to normal, I'm still experiencing the occasional, unexpected ache or pain, which I can't help but worry is a precursor to some other new, unwanted problem. I've also gained some weight over the past few months, which I'm finding difficult to get rid of, and the shorter days and colder weather, which always seem to occur this time of year, aren't helping the matter either. Then there's the adventure associated with taking an iron supplement . I've been anemic for the past several years without suffering too many ill effects, so why I felt as though I needed to start taking one now, and endure all the unpleasant side effects , is beyond me. I'd like to stop (I think it may be attributing some to my weight gain), but my last blood test sh...

Everyday the evidence keeps mounting against the wholesale taking of vitamins and supplements. Now the efficacy and the necessity for taking Vitamin D, a vitamin I once considered taking, even recommending it in the past , is being debunked. Vitamin D supplements 'don't ward off ill health': [There is] Little evidence pills lower risk of cancer, strokes or other conditions ......a review of 462 studies involving more than a million adults has concluded that a lack of vitamin D is not a trigger for many common illnesses. ..................... Lead author Professor Philippe Autier, from the International  Prevention Research Institute  in Lyon, France, said: ‘What this  discrepancy suggests is that decreases in vitamin D levels are a marker of deteriorating health. Ageing and inflammatory processes involved in disease occurrence .... reduce vitamin D concentrations, which would explain why vitamin D deficiency is reported in a wide range of disorders.’ I'm not quite sure ...

Most herbal supplements are fake ! At least it's not a surprise to me. And why would anyone expect it to be otherwise? After all, we're talking about a totally unregulated industry where there in no risk, nor penalty for lying, cutting corners, or making misleading statements concerning the efficacy of such products. What may be even more disconcerting is what this means for the rest of the industry? Even though this study only addresses herbal supplements, there is mounting evidence indicting the entire vitamin and supplement industry. (Most recently Childrens Hospital of Philadelphia  banned most supplements  from it's pharmacy). And just when I started taking an iron supplement. :( So if you're still skeptical, or like myself, find themselves in need of a supplement, just remember the old 'free market' adage caveat emptor  [buyer beware] Such is life!

I'm always mindful of that notable quote. A quote that so accurately reflects life, it's hard to forget. My favorite being The future is just a concept we use to avoid living today. Despite that being a quote by a fictional character, it's what Brenda said to Nate when they first met in the TV show  6th Feet Under , doesn't make it any less true, in fact, it might even make it a more compelling quote. The second is by Eric Hoffer , a moral and social philosopher who displayed particular insight into human nature, and that was In times of change learners will inherit the earth, while the learned will find themselves beautifully equipped to live in a world that no longer exists. While the latter depicts what I believe to be the perfect description of the state of affairs in the US today, here are two more quotes that come very close as well. The first one is by Eleanor Roosevelt, one of the most outspoken women in the white house, and attributed to dramatically changing ...

I know this is a little off topic, but living in the hotbed of the illegal immigration debate, I can't help but stray occasionally. For me, all this discussion about the reform of our immigration system, has brought to mind the movie Rollerball. Not the 2002 version, which was truly awful, and didn't make the point I want to bring up, but the original  1975 version , starring James Caan. The year is 2018. There is no crime and there are no more wars. Corporations are now the leaders of the world, as well as the controllers of the people. A violent futuristic game known as Rollerball is now the recreational sport of the world, with teams representing various areas competing for the title of champion. That is the plot line of Rollerball. Six corporations, energy, transportation, communication, housing, food and luxury in control of the world. I thought the movie was particularly compelling for the statement the team owner made to Jonathan (James Caan), when Jonathan commented ...

I had taken an iron supplement several years ago, but it made me constipated, and not feeling that well, so I stopped. So it was with great skepticism how I approached my primary care physician's suggestion I start taking it again. My iron is low, and has been for a very long time, as is my hemoglobin, and my doctor felt it would be a good idea to be taking it. I agreed, trying to avoid and conflicts, but my true intention was not to do so, but  a funny thing happened that evening. I received an email from my hematologist, making note of my low iron levels, and also suggesting I take an iron supplement. Now while I've always been skeptical of taking vitamins and supplements, I am helplessly superstitious, so when I get the same suggestion from two separate, unconnected individuals, I can't help but consider it an omen, and one I need to take to heart and adhere to. So I'm taking an iron supplement (been so for 4 days now), but instead of 325 mg twice a day, I'm only...

Why does the mere thought of using [table] salt make most people cringe? Salt isn't a problem. Sodium is, and you're right, there is some sodium in salt ( approximately 39% ), but that doesn't make it bad. Too much may. Of course too much of anything can cause problems. Besides, sodium is essential for human nutrition. It is used to transmit nerve impulses, and is found in every cell of your body. Most importantly, salt imparts great flavors to food, when used in the proper proportions. So you would think, at the very least, such highly rated chefs would not hesitate to use it in their food. One can only wish. Went out to dinner last night at Michaels on Naples . A very highly acclaimed Italian restaurant in Long Beach. At least you would think so by the price. I just wasn't impressed, and I'm not sure whether I'd go back. While Edie's dish, spaghetti with lobster, had some noticeable flavors, my lobster risotto was as bland as could be. Granted the risotto ...

November 3rd marks the end of daylight savings time ends. The clocks get turned back an hour, and daybreak comes an hour earlier. I just hope I can make it that long. There's still 14 days to go. The last couple of weeks have been particularly difficult. All I seem to want to do is sleep. 6 o'clock comes around, and it's still dark outside. So I turn over, bury my head in the pillow, and go right back to sleep. That's never my plan when I go to bed the night before, but it always seems to work out that way. And it doesn't seem to matter what time I go to bed either. Then on top of everything else, my nose started bleeding this morning. I haven't had a nose bleed in over 3 years, but whenever I do get one, I can't help but think back to 4 years ago when I had to get my nose cauterized and 12 years ago when I had to go to the emergency room. Fortunately this latest episode wasn't that severe, and I was able to get it stopped relatively quickly. [And won...

Or it's about to be anyways. It was 48.7ºF when I woke up this morning. That's not as cold as it can get during the coldest months of winter, but it is getting down there. It's also a lot lower than it has been over the past several weeks, and a sure sign winter is upon us. The question is whether I'm happy about it or not? Of course I'm not happy about it. I much prefer the summer months with their mostly balmy temperatures and longer days, but there are some things to be said for the winter months. For one, sleeping is much more comfortable. I always get my best nights sleep during the winter months. And............ OK, so that's the only good thing I can think of about winter, except maybe it makes me appreciate summer more. Oh well, I guess there's not much I can do about it (moving to the southern hemisphere is out of the question), except try and endure, and relish in the fact winters in southern California aren't really that bad!

I've always considered the t(11;14) translocation as the defining marker for Mantle Cell Lymphoma (MCL). If that translocation presents itself, there is a very high probability you have MCL, but the more I read, the less I am convinced of that argument being so set in stone. Why can't my diagnosis of atypical MCL just as easily be an atypical variant of Splenic Marginal Zone Lyphoma (SMZL)? Sure, I have the t(11;14) translocation, but when all the other factors are considered, I believe I'm a more likely fit for atypical SMZL. From Lymphomation.org Splenic Marginal Zone Lymphoma is an indolent (slow growing) b-cell lymphoma. It typically presents with an enlarged spleen (splenomegaly). "Splenic lymphomas present with a massive splenomegaly (enlarged spleen) sometimes with mesenteric lymph nodes or hepatic involvement, but without peripheral lymph nodes; bone marrow and blood are often involved." With the exception of mesenteric lymph nodes , and hepatic involvemen...

No more 80 hits in a day to gloat over. It's back to my lowly 30 or so hits per day, so I thought I'd just take the time to update a few items I posted on over the last few days. Edie had to stop the Pomalyst [for now]. Her white counts took a precipitous drop to dangerously low levels. I guess the Pomalyst is working too good. She's had 3 neupogen shots since then, and her white counts have rebounded to a respectable 2.3. That's still well below normal, but it's considerably better than where they were earlier in the week. Waiting for her next blood draw tomorrow [Monday] to decide how to proceed. I said before, this drug is very new, so there's going to be a learning curve. Just not sure Edie [or I] appreciates her being the one used as the guinea pig. Oh well, someone has to be! As for me, my MCL remains stable [no change in blood counts], but I'm still experiencing more and more fatigue , which I can't explain but am convinced is caused by the Lipito...