LIVING WITH MCL

I just hate it when people ask me for advice about what I've done [and am still doing] to keep my MCL at bay for so long. I hate it because I really don't have a good answer, and I don't want to mislead anyone. Sure I drink a lot of green tea, and a lot of red wine, but I'm not really convinced they have been effective in holding my MCL at bay. There just isn't any scientific evidence proving their efficacy. I am hopeful, and believe that in moderation, taking only what can be obtained naturally, can't do any harm. I won't take and EGCG or Reservatrol supplements. [note]The main reason I drink lots of green tea is to ensure I hydrate myself enough, and I drink red wine, well... because I like it.[/note] There are however, some practices I follow which I believe have been effective in extending my longevity, i.e. restricting caloric intake, and intense exercise, but I haven't seen any scientific evidence to prove the effectiveness of those practices eithe...

It's hard to believe I've actually made it to another birthday. My 61st to be exact. When I was diagnosed with MCL over 7 years ago, I said I would be happy if I could just get 5 good years. Well, I've far exceeded that goal, and now have come to realize, that another 5 years won't be good enough.  And why should it? I'm not feeling significantly different than when I was first diagnosed. Sure I'm 7 years older, and I've slowed down a little, but who doesn't once they get over 50? The only real problem is always dealing with the fact of an incurable disease hanging over your head, and never really knowing when the shoe is going to drop, and things start to get worse. [Fortunately I've got a good support group close by to help me with that.] But at least for now, everything is the same. My latest blood work is in, and everything is still stable, essentially the same as it has been for the past 18 months. My platelets and LDH were even slightly improve...

And I'm having them a little more often than I would like. The hardest part about getting older is realizing how profoundly everything changes, and this mornings bike ride just seemed to emphasize that point way too much. Now while I've only been a member of this bicycle club for the past two years, I've been riding with them regularly for at least the past 5 years. Still as I surveyed the parking lot of riders this morning, I realized a few of the usual riders, ones I have come to enjoy socializing and riding with, were missing, and this wasn't the first time. Plus it's not just Saturday's ride, but the Wednesday ride, has changed, as well, with new riders participating, regulars not, and even going to a different destination. Admittedly, the Wednesday rides have mostly gone back to the ride I've grown accustomed to , but this past Wednesday, none of the usual riders, who push the pace, showed up, so it was slower than it has been. Plus one of the regular r...

How much are two nights at the Mandalay Bay Hotel in Las Vegas, one 6 course and one 7 course dinner at Charlie Palmers Aureole restaurant, and three midday food preparation demonstrations, all accompanied by no less than 69 French, California and Washington wines worth? I have to admit when I first received the email describing this event, I was skeptical. There was no way to know how big this event was going to be, nor were there specific description of the dinners, or wines that would be served, to really make an informed decision about the event. Still, after considering the package included 2 nights at the Mandalay Bay, and 2 dinners at Aureole restaurant I didn't think we could go too wrong by attending. Plus it just sounded like a good excuse to get out of town for the weekend. So we decided to go, and headed out early Friday morning, as the first event, a pate preparation demonstration, was scheduled for 2:30 PM. Well the only thing I can say is the event was definitely wor...

Ever since screwing up the transmission in the Camry, getting back from Grand Turk, and learning Becky was going to be off work for [up to] two months, I seem to have succumb to a general feeling of malaise. And those aren't the only things. Over the past month, I've managed to lose 7 pounds.  That has helped my climbing prowess on the bike, but has resulted in a loss of speed on flat ground, so now I don't know if I should continue to my goal of 145 pounds (another 6 pounds), or just maintain this weight, but train harder. Then of course, there's the switch to 'real' caffeinated green tea which may be having an effect. Now while I haven't been experiencing any of the heart palpitations I was concerned about, I do think I am drinking a lot more of it, and maybe the caffeine is having some other side effect I can't quantify. And finally there are the changes that are just inevitable, that come because time doesn't stop, people move on, for any number ...

I've started writing 3 different posts on 3 different subjects this past week, but haven't finished any of them. I just don't seem to have any drive to inform the world of what is going on in my life.  And who really cares anywaze? So instead today, while I sip a bit of green tea this morning, I thought I would discuss some of the things I've learned, during this past week or so, about drinking the good stuff, i.e "real" green tea, not the stuff from Trader Joe's or Fresh and Easy, but the loose leaf variety, that actually looks green after brewing. The best thing I've discovered so far is the extra caffeine, I've been getting, hasn't resulted in any heart palpitations, and I've drank over 40 cups this week. But more importantly I think I've finally come up with the perfect brewing technique to optimize flavor and EGCG intake. I use two (2) grams of tea for every eight (8) oz of water, and I don't reuse the tea leaves. I use onl...

Despite being a heavy drinker of green tea since my diagnosis, mainly for its cancer prevention, and hopefully cancer curing qualities, I recently have developed a new found enthusiasm for green tea. Now whether it has been the green tea I have been drinking for the past 6+ years, my heavy exercise routine, or just pure chance that has kept my MCL stable, or at least [very] slow progressing, for the past 7+ years is certainly open to debate, but based on past research, I have chosen to believe green tea has at least helped to some degree. So what has given me this new found enthusiasm? Well, a friend of mine, and cycling buddy, was recently diagnosed with bladder cancer, and knowing my daily regimen called to ask my advice on green tea. He had already done a lot of research on the subject, so when I told him my obsession with green tea consisted principally of drinking the least expensive, decaffeinated green tea available (Trader Joe's brand of 18 tea bags for $3, and more recentl...

Oh, how I yearn for the good old days, when getting through an airport security line wasn't such a hassle, when a 250 Mb hard drive was considered huge, I didn't have lymphoma, the dollar was still king, and the US actually made stuff. Last week was Digital Process Data (DPD) training week at work. Now for those who don't know what DPD is, basically it's the computer data (software) fed into numerical controlled (NC) lathes used to machine parts into complicated configurations. It's also used in the design and inspection of those parts. Now that, in and of itself, isn't difficult to understand or deal with (at least it's no more difficult to understand than all the computer graphics we are subject to on TV and in the movies now a days), but without going into any great detail of everything else involved, i.e. controlling, disseminating and validating the software, suffice it to say it's a lot more complicated than it sounds. And it's especially more ...

Well after racing at Eldorado Park last night, and a relatively intense ride this morning, I'm encouraged. My knee did not hurt at all. Not only that, but I just received the results of todays blood work, and my absolute lymphocyte count dropped to 81 thou/cumm (ref 4-11). That's down 20%, and hasn't been that low since February 2007. Of course, one test does not a trend make, and as you may surmise there is also some bad news. My hemoglobin dropped slightly again to 11.6 g/dL (ref 14-18), platelets to 187 thou/mcl (ref 130-400), and my LDH increased to 147 IU/L (ref 91-180). Now I've seen all those numbers before, and with the exception of my hemoglobin those results are within the normal range, so I'm not overly concerned just yet, plus I know I don't feel as bad as those numbers may suggest. For someone with an 11.6 g/dL hemoglobin, I think I'm still in pretty good shape. I managed to stay in the pack for the entire race (one hour) last night (albeit in t...

Well, it's been a week now since Edie and I returned home from Grand Turk, and despite being happy to be home, the reality of how difficult it is readjusting from a very relaxing week, with limited access to information from the [real] world, is finally setting in. Two notably good things were the HINI [swine] flu is not dominating the news anymore, and Morris is finally warming up to Chloe. I guess Morris has finally come to the realization that we still love him, and Chloe is here to stay. Oh, if that were the only two things I had to deal with, life would be good, but that just isn't the case. First off, gasoline prices have jumped 10% [maybe closer to 15%], and that's just after deciding I didn't need to replace my Toyota Camry (34 mpg), after cracking the transmission , and deciding I would start driving the Lexus (23 mpg) from now on. Secondly is the difficulty getting back in decent cycling form, and hurting my knee trying to do a little too much a little too soo...

I don't know about the rest of you, but I always seem to enjoy the anticipation of a vacation, more than the actual vacation. Now it's not like we [I] didn't enjoy the vacation. There were actually a lot of things to like about Grand Turk, i.e. great diving, quiet and untraveled beaches, friendly inhabitants, and near perfect weather. (The only rain we did get, started just before our 1st dive Thursday morning, but by the time we surfaced the weather was beautiful again). My problem is, I always seem to focus more on the few things I don't like. Traveling of course is always a hassle, but that's a problem no matter where you go, so there's no need to mention that. Then there was the resort which didn't quite live up to expectations, but neither was it awful, so I won't complain about that too much either. The most disappointing aspect of Grand Turk was the lack of high quality restaurants. When I go on vacation, it's the food [and wine] I look forwar...

I may need another vacation once I get home. Between the jet lag, the diving, the eating and the drinking, and the heat, I'm not sure I'm gonna  make it to the end of the week. It's only day 3, and I'm pretty much wiped out. Anywaze, we made it safely to the island late Saturday, and I've already managed to get in 3 dives. On the first dive I had some trouble equilizing [my ears] when I got down to about 70 feet, and opted out of the second dive that day, but despite my ears still feeling a little clogged today, I did manage to complete both dives without incident. We also managed to find a little liquor store, a short walk from our resort, which has a pretty decent selection of wine, which is very surprising, considering there is not much happening on this island [Grand Turk]. Of course that does make for a somewhat relaxing time. So life is good! We also rented a little golf cart for the non divers to explore the island, while the divers are diving, and to shuttle...

It seems based on recent discussions on the MCL message board, and a review of my first post on fatigue , I may have led some people to interpret I believe fatigue to be psychological. So let me set the record straight. FATIGUE IS NOT PSYCHOLOGICAL! There are many factors which can contribute to the feelings of fatigue, which are psychological, e.g. depression from having a terminal illness, but that doesn't mean fatigue isn't real. It is real. I know, because I experience fatigue every day. I just try not to wallow in such feelings, and rather attempt to do something about it. There is no doubt in my mind that as we get older our bodies don't respond as they did in the past. There is also no doubt that cancer patients, who have undergone chemo and/or a transplant, have had

Well, there may be a few out there who will revel in the knowledge I may have been struck with some bad karma, as the result of my recent post on fatigue , and my last 3 posts on the MCL message board, regarding fatigue, and the US health care system. I didn't really think the comments were inappropriate, my only intention being to try and get everyone to learn and think on their own, without relying so much on others, but yesterday, when I was driving to work, I hit a [BIG] rock (ironically near the Big Rock) on PCH, a few miles north of Zuma Beach (it was dark, and I had just come around a bend in the road), which I just learned today, resulted in a cracked transmission which will require a new or rebuilt replacement. My only consolation is it's an 11 year old car with 230,000 miles, and since I do have an extra car, I don't have to spend the money to fix it. Plus, when I bought the car, I said when the Camry dies, I'm going to retire. So does a broken transmission co...

Every year it's the same thing. American Express debits my Starwood Preferred Guest card for a $45 membership fee, I call them to get a good will credit, and every year they tell me the same thing. I'm sorry we can't issue you a credit. Then I talk to a few other people, write an email, and with the exception of last year, I have always been able to obtain a credit for the membership. Last year, if you remember , was different. No matter what I did, I couldn't get any satisfaction from anyone, and I ended up cancelling the card. Of course about a week after doing that, someone at American Express, who does have the authority to give me the credit, called, and not only gave me the credit, but gave me an extra $50 to boot . So I agreed to use the card again. She also gave me her name and number to call, should this happen again. Unfortunately I lost her number, but did remember her name, so I thought I would still be able to get in touch with her, and solve my problem. Bu...

It may even rival March 26, 2002, the day of the fateful blood test which led to my diagnosis of MCL. Not only was it one of the hottest days of the year, maybe even one of the hottest since I've been in California, but my check out dive, for our upcoming trip to Grand Turk, went horribly. This probably wasn't the best day to be donning a 7 mm wetsuit, strapping 60 pounds of weights and tank to my back and then traipsing 100 yards to the ocean, but I needed to check out my gear, to make sure everything was working properly, before going on vacation. So my buddy drove down from Glendora to pick me up first thing in the morning, and we headed out to Corona Del Mar. We decided against Shaw's Cove in Laguna Beach, our first choice, because the thought of adding 100 stairs (50 down and 50 back up), was going to be more than we wanted to endure, considering the hot weather, simply to go for a check out dive. Things didn't start out badly either. We didn't have to pay for ...

Went to a wine tasting today, which is of little note, except for the fact I met someone I hadn't seen in at least 20 years, and was so surprised, I had to blog about it. For those of you who don't know Alex, or may have just forgotten (it has been 20 years), Alex was one of the charter members of Lightning Velo, the bike club I used to ride with, and is most remembered for the encounter we had with an old man driving his car on PCH. It seems this driver didn't like the way we were riding, so he decided to cut in front of us, and stop, causing Alex to run into him. No one was hurt, but this guy decided he was going to teach us a lesson, and proceeded to try and get out of his car. Now Alex, at 24 years of age was a pretty buffed guy, who was also a boxer, and not someone I would ever want to meet in a dark alley, so why this old man (at least 60 years old) wanted to get out of his car, and mix it up with about 8 pretty pissed off cyclists was beyond me. So Alex, without muc...

That's the cyclist's mantra. Well, at least that's what I tell myself when I encounter a particularly strong head wind. And such was the case today, as I headed out the door at 6:45 AM for my usual Wednesday morning bike ride. The wind was already starting to kick up, which is not typical for that time of the morning, so I knew it was going to be tough, but I thought about the cyclist's mantra, and headed out anywaze. It's easy to say I'm glad I went now that I'm home comfortably resting in front of the TV, but that's not how I was feeling as I was riding home into that wind. The only saving grace was there were 7 of us who decided to turn around at the Huntington Beach pier (10 miles short of our original destination of Corona Del Mar), to face those gale force winds. (Ok, so I exaggerate a little.) Two of the riders dropped off shortly after we turned around, but I managed to hang on to the remaining four all the way through Bolsa Chica. I didn't d...

I'm sure I pissed off a few people on the MCL message board today with my comments about fatigue, and I'll probably piss a few more people off with this latest post, but I can't help myself. I actually enjoy sparking controversy sometimes, it helps get the juices flowing, not to mention fatigue is one of my favorite topics, second only maybe to discussions on the US health care system, or lack there of. There seems to be constant discussion about fatigue on all the message boards, not just the MCL board, but it all boils down to lymphoma survivors claiming bouts of fatigue, after chemo, a transplant, or just from having lymphoma, without any logical explanation, e.g. low hemoglobin (around 10 g/dl), EBV , CFIDS , all which can be checked for. I have to admit I am of the opinion of most of the doctors, who have little sympathy for these patients, that fatigue in the absence of a low hemoglobin etc. is mostly psychological. Certainly there is the fatigue associated with recei...

Besides my boss, and a select few others, I don't make it a habit of telling anyone I have lymphoma. There are a few, who for various reasons, have asked about me, and I've relented, telling them as well, and then there are those that have stumbled upon my blog, but I have always believed those numbers to be very small. So it's always a surprise when I discover someone, who I least suspect, is aware I have lymphoma, and it's even more surprising when that person is someone I've just met for the first time. Todays bike ride presented just such an instance. With the help of a fortuitous traffic light, 6 of us had broken away from the main pack, and managed to stay away for a good time. I could have stayed away for the remainder of the ride, had I been willing to push myself a little more, but one of the other riders dropped off (there were only 3 of us remaining at the time), so I decided to drop off with him. I hadn't known the rider, so being the nice guy I am, ...