LIVING WITH MCL

The internet has been a great innovation. It has enabled people from around the world to easily keep in touch, sharing ideas and information on just about anything. You don't have to know where anyone lives, or even their name to be able to communicate. Every day it brings the world closer together, and maybe some day it will lead to the elimination of conflict. Ok, so I'm a dreamer! Through my blog, I have been able to keep a diary of my experiences dealing with living with a terminal illness (MCL), and convey those experiences to people in places, I never dreamed possible. Looking at the stats from my blog, I discovered people all over Europe, South America, even India and Croatia have viewed my blog. I just find that truly amazing. But I digress. Recently I envisioned starting a wine and food blog, among the members of the wine club I belong (SAWG), where we could all share our experiences about wines we've tasted, restaurants we've eaten at, wine and food ...

I took it out for about a 30 mile shake down ride this morning, and up a few hills to see how it performed. My first impressions are, the bike is beautiful, and it rides pretty good. The tires weren't the highest quality tires available, so that may have contributed some to a sense of sluggishness I felt. Of course that could also be from the fact I don't think I've fully recovered from Sundays ride . I didn't feel that good on Wednesday either, come to think of it. I did feel a little stretched out, when riding on the brake hoods, which I attribute to the handlebars being about 1/4" (6 mm) wider than my other two bikes. 1/4" isn't very much, but it was noticeable. I may decide to switch to 42 cm carbon fiber bars, or rotate the handlebars up slightly, which seems to be all the rage lately. Even the pros are doing that. It may screw up my positioning some, when I'm in the drops, so I am a little hesitant. In the mean time, I'm going to ride th...

In the immortal words of Gilda Radner's father, it's always something. If it's not one thing, it's another Just when I thought for sure I would have my new bike today, there was a problem with the assembly of the bike. The hole for the brake, in the fork, appears to have been drilled incorrectly, not allowing sufficient threads for the nut to attach to the brake bolt, and hold the brake onto the fork. At least it wasn't drilled correctly for a Campy Chorus brake. It's just a good thing I didn't take it home last week, and try to assemble it myself . I really would have been frustrated, thinking I was doing something wrong. Oh well, there's still a chance I'll have the bike on Thursday, but it might not be till next week. Of course Becky knew right away, when I came back from lunch, that I didn't get my bike. I don't think it was so much the expression on my face, that led her to that conclusion, rather it was the fact that I barked at her...

The worst part about knowing you have a terminal illness, yet most of the time not feeling that sick, is you never really know when you're not feeling great, whether it's because of the illness or simply the fact that maybe you're getting old. Yesterday, I did by far, the toughest bike ride in over 3 years, managing to beat at least 5 other riders out of 20 up all the hills, but I paid for that effort afterwards. I was beat. After taking a nice hot shower, and having some lunch, I plumped myself down in front of the television to watch the final round of the PGA golf tournament at Doral. Admittedly, golf isn't the most exciting sport to watch, but the networks do a pretty good job of keeping your interest, although I still managed to catch a few winks before watching what turned out to be a pretty exciting match at the end. And I don't think I moved from that spot, the rest of the day, except to go to the bathroom and eat dinner. There was a time, at least I don...

I came across The Soy Controversy by Vreni Gurd which sheds some disturbing news on the consumption of soy and soy products It looks like soy might be causing more harm than good. There were a couple of things that were of particular note. One was how many things come from soy where there is no indication that to be the case. The following are at least a partial list of some items -Textured vegetable protein (TVP) -Textured plant protein -Hydrolyzed vegetable protein (HVP) -Vegetable protein concentrate -Monosodium Glutamate (MSG) -Lecithin (usually from soy) -Vegetable oil (usually from soy) -Vegetable broth (usually from soy) -Bouillon (usually from soy) -Natural flavour (usually from soy) -Mono-diglyceride(usually from soy) and another was that Asians don't eat as much soy as we (at least me) have been led to believe.  This from Myths & Truths About Soy by the Weston A Price Foundation Average consumption of soy foods in Japan and China is 10 grams (about 2 teaspoons) p...

I know I said I swore off political blogs , but with all the hubbub over John Edwards decision to continue his campaign for the presidency of the US, despite his wife's cancer relapse, I couldn't resist checking a few of my favorite political blogs, to see what their take would be on that decision. Besides I thought it relevant to my blog. Not surprisingly, there were no surprises. The so called " compassionate conservatives " were all expressing their distaste with John Edwards decision to continue his campaign, calling him uncaring, pathetic etc. Just who are all those people presuming to know what they would do in the same situation, and then passing judgement on their decision? They have no idea what it is like to be in John and Elizabeth Edwards shoes. Nobody can possibly know what they will do in that same situation, until they are in those same shoes. And you can't put yourself in those shoes. You have to be put there. Life doesn't stop just because ...

My new bike was not ready today, as I planned. Major BUMMER! :( It seems there was some confusion as to how much of the bike I was to assemble. There was a time, when this wouldn't have presented much of a problem, but things have changed quite a bit, since I owned a bike shop, and I just didn't want to deal with the assembly. Besides, between trying to ride, golfing, going to wine dinners, and of course napping in between those things, it might have taken me a month before I found time to put it together. So we fitted the bike, making sure the seat height and handle bar position were correct, and I left the bike for Steve to finish putting together. Now, I'll just have to ride that old bike of mine until next week, when I pick up the new one.

The power supplies arrived on schedule this morning, and were installed in the server. Unfortunately though, that didn't solve the problem right away. The system still would not turn on. The systems guy was in a quandary, thinking maybe the mother board was fried also, but he continued tinkering around for another hour or so, and finally got it to work. And as it turns out, the power supplies may not have been ruined afterall, although he didn't want to shut down the server to check that out. [I didn't blame him. I wouldn't have either.] Oh well, not a big deal. The motherboard wasn't fired, and everything is back to normal. The worst case scenario being, we now have a back up power supply. But I still went home early today anywaze.

I'm old enough to remember when there wasn't a computer on everyones desk, and if we had to write a report, we used a typewriter. Now there's no doubt the computer has been a powerful tool in increasing productivity, and easing the pain of typing reports, making modifications easier, but what happens when the computer system goes down? When it happens to your home computer that's one thing, but when it happens at work it's a whole other problem. When I arrived at work this morning, and turned on my computer, I discovered I could not connect to the server. At first I thought it might have been just my computer, but after checking two other co-workers computers, and contacting our systems guy, I discovered that the power supply, including the back up power supply, in the server was fried, apparently from a system wide power outage, in the area, early this morning. In short the server wasn't operating, and when that happens not much work gets done. Jobs don't ...

Is I didn't go for a bike ride, because I know I would have enjoyed that even less than the round of golf I played today. Like last weekend , I played terrible for the first 11 holes. After that, I managed to shoot 7 over par, which included a 7 on the #17 par 3. (It took me 4 shots to get out of the sand trap.) Doing the math (I shot a 105 total), that's 26 over, for the first 11 holes, 2 worse that last weekend. At least last weekend the weather was sunny and warm. Today the sun never shined the entire round (and still hasn't yet), plus the temperature never warmed up, making for a pretty miserable day. Oh well, such is life. From now on, I think I'll just start on hole #12! :)

Just when I think I'm doing so good, now having ridden 390 miles this month, ( up from 300 on Wednesday ), this mornings ride just seemed like a chore. Once at the start of the ride, and in the heat of competition, I was able to get a little more comfortable, and ride pretty good, but getting to the ride, and riding home after the finish, I was beat. Fortunately there was a big turnout this morning, making it a lot easier to sit in and draft. (Still over half the group dropped off by the start of the second lap.) Of course, part of my problems may have had something to do with the hard ride I did yesterday, chasing Rocky and Edgar (two younger and stronger riders) for 45 miles and 2000' of climbing, all over Whittier. But 10 years ago I never had a problem doing back to back hard rides. And now my lower back is a little sore, and from what I don't know. Af first I thought maybe it was the leg curls I was doing at the gym, but I stopped doing them, and the aching still...

It's been over a week since I swore off news blogs and blogs with a political agenda, and I can honestly say, I have never felt better. I hadn't realized, until now, just how much time was being consumed, writing and responding to various posts and comments, when I could have been partaking in more enjoyable and productive exploits. I can only imagine the "spinning" taking place right now on the internet, regarding the firing of several US attorney's, by people who have nothing better to do with their lives. Well I for one don't have that problem. I have plenty of things to do, Two of which are golfing and cycling. Unfortunately my golf game has been suffering as of late, and I need to be spending more time working out the kinks there, and while I am in pretty good shape, considering the shape I'm in, my cycling has been suffering as well. But I'm changing all that. Already this month, I've been managing to get to the driving range several time...

And I'm happy to report, my platelets are back up to 218, after dropping to a new low of 195 last month , so that is somewhat reassuring. After thinking about it a little more, I remembered I had increased the amount of green tea I had been drinking, from about 4 tea bags a day to 6 tea bags a day over the last 2 or 3 months. It has been reported that green tea can inhibit platelet aggregation , and is likely the reason my platelet count was down last month. Of course why it is back up again, is another question, but that is a good thing, and I'm not going to worry about it. I've learned when and when not to worry ! As for everthing else, nothing much has changed. Two other measures I watch closely, my absolute lymphocyte count and hemoglobin have remained stable for the past 6 months at around 80 thou/cumm and 12.4 g/dl respectively. Tomorrow I visit my oncologist to discuss all this, and for the obligatory bimonthly general examination, that is to check my spleen, other...

It appears that failing to truncate my signature line, in the email I referred to in yesterdays post , did not produce any unexpected or unusual responses from anyone, when I arrived at the golf course. Instead of worrying about that, I should have been worrying about my golf game, especially considering the fact, I had just taken a lesson on Wednesday. Anyone who plays the game of golf, knows full well, the surest way to screw up a round of golf is to proceed it with a lesson. It's not that lessons are bad, it's just trying to change old habits on the course, rather than on the range, only produces disastrous results, and I represented a perfect example of that yesterday. (I usually figure it takes me about two months before a lesson takes hold.) I did manage to break 100 (shot a 99), but it took playing 4 over par for the last 7 holes to accomplish that. If you don't want to do the math, for the first 11 holes I was 24 over (par was 71 on this course). But even though I ...

Just sent an email to someone, which included my entire signature line (shown below, and used when communicating with others on the lymphoma/leukemia/myeloma message boards) who I hadn't intended to see it. Marc - Long Beach, CA Dx atypical MCL(CD5-) 3/26/02 Leukemic Phase; Age 58 - No treatment yet Husband of Edie - DX MM April '06 Radiation X 18 of T2 plasmacytoma Started Zometa treatments May '06 Start Thalidomide + Low Dose Dexamethasome Jan '07 http://livingwithmcl.com http://myjournal.livingwithmcl.com http://trusted.md/taxonomy_menu/3/54 The future is just a concept we use to avoid living today I'm playing in a golf tournament this weekend, and I sent payment for the tournament through the bill pay system of my bank. I did that 2 weeks ago, but I was told today the check had not been received. So I spent about 30 minutes talking to several people, most of whom had no clue what they were doing, before finally getting the check stopped, And no sooner do I ge...

Almost everyone in the world is going to know me now! At least those who read " Blogging at life's end ", in the Lifestyles section of ASAP , the AP's new multimedia service, today. I'm not sure I like the title, " Blogging at life's end " though. Everyone may now be thinking I'm in the last throws of life, since four of the six featured bloggers have already died. Of course Dick Cheney said the insurgency, in Iraq, "was in its last throws" a few years back, and we are all aware of the accuracy of that statement. (Sorry, I couldn't help myself! Just because I said I wouldn't read any more news related blogs or blogs promoting a political agenda , doesn't mean I can't throw in the occasional jab every once in awhile.) So let me set the record straight. I'm not in the last throws of life! Still the article is a fair representation of what I indicated in the interview . I just wish she had referred to me as Mar...

I'm done reading news related blogs, and blogs promoting a political agenda. They have become way too combative, and just aren't worth the aggravation and time. There are far more pleasurable pursuits I could be partaking in, rather than sitting on my butt, debating some issue with individuals who believe "it's all about them". It's as if they believe everyone was born with the same intelligence, the same athletic ability and were afforded the same opportunities in life, and if you happen to be poor, sick or down on your luck, it's because you made bad choices in life, and it's not their problem. I can't understand that lack of compassion, but neither am I willing to try and sway the opinions of those who feel that way any more. So I've decided to quit cold turkey, and limit myself to reading blogs on wine, cycling, golf and of fellow patient bloggers. And to top it off, yesterday I bought a new set of wheels for my current bike, and I just ...

Last week, Tiger Woods had a 3 foot putt for birdie, on the second play off hole, to win his match, at the Accenture Match Play Competition , on Friday, and get to the quarter finals on Saturday. Unbelieveably he missed that putt, and went on to lose the next play off hole. And today almost the same thing happened again to another golfer. Boo Weekley had a one stroke lead going in to the final hole of the Honda Classic today. All he had to do was par the last hole, a 604 yard, par 5 hole. He reached the green in regulation and his 30 foot (???) putt for birdie, came up 3'-3" short. Still an easy putt you would think. Well not so when $990,000 is on the line, and Boo missed the putt, leaving the ball 3'-2" from the cup. Fortunately he made the putt coming back, but it left him in a 4 way tie for first place, with a play off to continue tomorrow, from the 10th hole. But I know exactly how it is. Other than trying to hit a baseball traveling at 100+ mph, there is...