LIVING WITH MCL

After completing the 109 miles of El Tour de Tucson, 2 weeks ago, you might recall my post about unbelievably managing to down 4 pints of Guiness . Well, while I was downing those 4 beers, I was having a discussion about lymphoma, with the coach and 2 of the participants, when I was asked what I thought the reason I had been fortunate enough not to have needed treatment for the past 5+ years. My immediate response was, I just felt it was the luck of the draw, and that there really isn't anything one can do to prolong the inevitable. Now whether that is true or not would certainly spark a wild debate, were that to be the intention for this post, which it isn't. After all I'm not even sure I believe it totally. Else why would I continue to ride my bike as much as I do, and have not had a hair cut since my diagnosis. (We certainly can't forget the story of Sampson?) In fact, I do believe those are two contributing factors, along with a little bit of luck and avoiding an...

As if enough things haven't been turned upside down enough this year already, so it must have been destined for Thanksgiving this year to be different as well. Every year for the past I can't recall how many years, we have had Thanksgiving dinner, at Edie's nephew's home in the Valley. But this year, Edie's nephew decided to go back home to Ohio, and spend Thanksgiving with his mother and family there, leaving us to fend for ourselves. Now it's not that I love spending Thanksgiving in the Valley with Edie's family that much (it really is a love hate relationship, I dread the 50+ mile drive), I have sort of grown accustomed to the routine. So this year instead, we had a Thanksgiving day brunch at Mr R's Grill in the Long Beach Marriott hotel, with Edie's niece (who also lives in the Valley), her husband and two boys. It was nice, the food was good and plentiful, Edie got to spend some time with her family, and best of all I didn't have to drive ...

This was a tough ride, despite the fact there was only about 2700 feet of climbing, and is about the best way to describe how I felt after completing the 109 mile El Tour de Tucson bike ride. The toughest part of the ride were the two dry river bed crossings, one at the 8 mile mark, and the other at the 46 mile mark (conservatively estimated at 200+ yards each), which had to be traversed on foot, carrying your bike on your shoulder. [Fortunately my bike weighs less than 16 pounds.] Plus, by 11 AM the temperature was in excess of 84 o F, making the ride that much more difficult. Still, we (I was riding with a group of 5 other Team in Training participants) managed to complete the ride in 7 hours and 12 minutes, which doesn't take into account the fact we didn't cross the start line until 15 minutes after the official start time. (This is a mass start race, and there were about 4000 cyclists in front of us at the starting line.) So when you take in to account the two river bed...

Before I head off to Tucson for the 109 mile El Tour de Tucson tomorrow, with the Leukemia and Lymphoma Society's Team in Training , I thought I'd leave you with this picture, which incidentally won 1 st place in a recent photo journalism contest in Ventura, CA, depicting one of the manufacturing units, and it's crew, where I work. To be clear, I'm not one of those guys you see there (back in Pittsburgh, we used to call them mill hunky's) doing the back breaking, dangerous work. (As I've described it many times to others, I'm an educated mill hunky! :) I'm the one, standing in the [distant] background (who you can't see), that tells manufacturing what temperatures the parts need to be heated to for forging, among other things. The unit the crew is working on is a 50,000 pound hammer. Just picture an old time blacksmith making horse shoes using a hammer, then multiply that by 50,000 times, and you'll get the picture. I think it's amazing...

Well today was Edie and my anniversary! It's hard to believe that it's been 33 years since we were married. Apparently it was so hard to believe, it didn't even dawn on me, until Edie reminded me a few minutes ago. Oh well, I guess I've just got too many other things on my mind. At least I hope that's my excuse. I'm not sure I can come up with a better one. :(

Being I had 3 relatively intense bike rides this weekend, and I'm not planning on riding today, I thought I'd take this opportunity to update everyone on Edie. But before I do that, I wanted to apologize to any subscribers who may have received duplicate and/or triplicate notifications of posts. There was a glitch in my Subscribe2 plug in when I upgraded my blogging software. I have since fixed that problem, and you should no longer receive duplicate and triplicate notifications. Of course, you may not receive any notifications, so this post is also a test of that fix. Ok, enough with the administrative stuff! Last Friday, Edie had her catheter (the one for her dialysis) removed. She had been resistant to this prospect initially, since she was concerned her kidney problems would return, requiring her to start dialysis again, and she didn't want to have to go through reinserting it. Apparently inserting it was somewhat painful. The nephrologist was concerned that if th...

Last night, sitting in front of the TV watching Ghost Whisperer and Womens Murder Club, there were all sorts of things running through my mind. Mostly I was thinking about how just about everything seems to take on more significance since my diagnosis. I've certainly become more passionate about social issues, mostly health care, but now I'm even in support of illegal immigrants as well. I just want everyone to contribute their fair share for the services we all require, instead of allowing some in society to leech off the hard work of all the law abiding citizens and non citizens in this country. Immigration reform is the only way we're ever going to solve the health care crisis, and other vital issues confronting this country, and is the one thing George Bush may have gotten right. But I digress! Last night after installing a new RSS/Atom feed reader , which aids the reading and reviewing of other peoples blogs, I started reviewing a few blogs, several of which I hadn...

Just read this post on the Mulitple Myeloma (MM) message board I subscribe to, which I thought of value, as it points out how little most Americans know of how the US health care system works. I was in the hospital a few months ago and was asked if I wanted a flu and a pnuemonia shot. I thought it would be a good idea, since I don't want to bring any nasty germs into the house and subject my MM hubby to them. Before I was released, I was told my insurance (Blue Cross) wouldn't pay for the vaccines because I was too young. I am 48. What surprised me the most about this post, was not the fact her insurance company denied the claim, but that she seemed surprised they did. Doesn't she understand how the US health care system works? Unfortunately she, like many others, don't understand that health care in the US is controlled by a "for profit" health insurance industry, whose priorities lie not with their policy holders in insuring the best health care possible...

I sure hope I'm not getting too far ahead of myself here, by extending a big thank you to Millenium Pharmaceuticals ( MLNM ), the makers of Velcade. So far, Velcade is doing a great job of treating Edie's myeloma. All of Edie's counts are essentially back to normal, with the exception of some minor discrepancies, which I'm not going to fret over, and she has been off dialysis, since last Monday, October 15th. Edie has been experiencing some peripheral neuropathy (PN) which has been causing her difficulty in opening containers, and even writing, so the doctor has decided it is best to cut back on the dosage from 1.3 mg/m 2 to 1.0 mg/m 2 . The recommendation by Millenium Pharmaceuticals, when the PN is that bad, is to eliminate the Velcade altogether, until the PN subsides, but we really didn't want to do that, since the Velcade seems to be doing such a good job, and her kidney function has not returned completely to normal (only enough to get off the dialysis). So...

Well I think I've finally got the new bike dialed in. Yeah, I know it's only been just over 6 months since I got my last new bike , but hey, I wanted another one. I just love the curved top tube, on this bike, and had to have it. It also makes the bike look fast, even when it's just sitting there. And when you're as old as I am, you at least have to look good. And if you notice in the background, even Morris had to stop and admire it. I was going to sell the Torelli, but after riding the Specialized, I'm not so sure I want to. They are two very different riding bikes. The Torelli is a much stiffer and a better climbing bike, while the specialized is soooo much smoother. It's like the difference between driving a Porsche or a Cadillac. I'm just not sure which one I prefer better. They both have their pros and cons. And after struggling on todays climb up Turnbull Canyon, and beyond, on the "Cadillac", I'm pretty sure I'm going to keep...

Well, here it is Saturday morning, and it's raining, so you all know what that means. No bike ride and another post. The last couple of days have not been so good. It seems the cumulative effect of Edie's treatment regimen is taking its toll. Fridays are typically very draining for Edie, consisting of dialysis in the morning, then chemo in the afternoon, but yesterday seemed especially draining. After getting home around 4:30 PM, all Edie wanted for dinner was a chocolate milkshake from McDonalds, and then she was off to bed. I should say she tried to get some sleep, as the peripheral neuropathy, and overall body aching made that difficult to accomplish. Fortunately she has managed to get some sleep, and is currently asleep as I write this post. Hopefully all this sleep will rejuvenate her enough (like last Saturday, when she felt well enough to go out for dinner) to go to a friends 60th birthday party tonight. I used to think the AS9100 audits, I go through at work ever...

One of my passions, at least since my diagnosis, has been with health care reform. Fortunately, the majority of the population and most candidates recognize this is an important issue, maybe even ahead of the Iraq war, and it is gaining major prominence in California, with Governor Schwarzenegger's revised proposal for health care reform. I applaud the governor for his effort in bring this issue to the forefront, but his new proposal has some issues, the two biggest of which are the mandate that everyone purchase health insurance, and secondly continuing to place the burden for health care on the backs of employers. I don't think either of those two proposals provide any meaningful reform, but they do provide the fodder, for those with a vested interest in the status quo, to successfully fight the proposal. In that regard, I have written the following letter to Governor Schwarzenegger, outlining my suggestions for improving his proposal, which I believe can gain greater unive...

Today, I found myself reading excerpts from an interview between Lance Armstrong and Darren Rovell, and then listening to that same interview , to be sure my ears weren't deceiving me. It looks like Nike is going to launch a new line of Livestrong Apparel, and donate 100% of the proceeds to fund cancer research. That is just unheard of in the corporate world. I can't imagine another company doing that. [Even a health insurance company.] The only comment that seems appropriate now is, I know what brand of running shoes, running shorts, or any other piece of sports apparel, I'll be buying from now on.

I blogged yesterday, on my other blog , about what I believe to be an irrational fear of "socialized medicine" . Without going into the particulars of my thoughts on the topic, (you can read it for yourself if you're interested), I did get a comment from one of my loyal readers , who blogs in support of the health insurance industry , suggesting I am bitter about my situation, and that is why I feel the way I do about the current state of US health care. Have I ever suggested to anyone that I am bitter about my situation? Certainly, I'm not happy with the fact I have mantle cell lymphoma, but neither am I bitter about it. People get sick all the time, and there is no reason to believe I, or anyone else, should be entitled to some special dispensation not to get sick. Getting sick is part of life. Everyone will get sick sometime in their life, and we all have to deal with it as best we can. In some regards I actually feel it was of benefit, and helped put a differen...

That's how many miles I put on my bike last month. Now while you may not consider that of any particular relevance, I sure view it as a milestone. I have not put on that many miles in one month, since I started keeping track of my mileage in '02, and I doubt I've ever put on that many miles in a single month since I started riding a bike competitively in '82. And to make that sound even more monumental, I climbed over 17,500 feet, and burned 50,000 calories (almost 15 pounds) in the process. I think I'd better go rest now! :)

Those were the exact words used by Edie's oncologist to described her latest Free Light Chain test results. Edie's Kappa Free Light Chains is now within the normal range. Her Lambda Free Light Chains were below normal, but we're not really sure if that is of any significance. I guess that will give me something to do for the next hour or so. Of course we can't forget the old adage "one test does not a trend make", as evidenced by the fact, Edie's creatinine went back up to 3.4, from the 2.1 reported last week . Still, all things considered, it is encouraging, and it appears progress is finally being made. In fact, I was so elated by the news, I wasn't even upset yesterday, when I lost my second Mens Club Match Play match yesterday, on the second hole of a sudden death play off, after being tied at the end of regulation play.

While it's not raining at this exact moment, it did rain quite a bit last night. Consequently the roads are pretty wet, and since there's still a 50% chance of rain the rest of the morning, I won't be riding my bike today. So in keeping with my threat to post under such circumstances , plus the fact Edie did receive some good news yesterday, I thought I would inform everyone of that news. Edie's creatinine dropped to 2.1. That's still not within the normal range (0.6 to 1.1), but it is a far cry from where it was previously, when it got as high as 6.1, and she was admitted to the hospital. Now we can't know for certain that the drop is not a result of the dialysis treatments she is undergoing, her oncologist does seem to think the drop is more significant than one would expect just from dialysis. [The Velcade may just be doing its job, and at the very least Edie may be able to get off dialysis soon.] So on top of the fact, the rain is bringing much needed re...

It seems even Morris ( you remember Morris our cat ) has been so distraught lately, he decided to leave Sylvia a little treat, in her bathroom, last night. [He's such a good boy!] Sylvia has never experienced anything quite like that before, and I thought her reaction was a little unusual, if not comical. Instead of picking the rat up, and throwing it in the trash, like I would have done (fortunately Morris did kill the rat), she picked up the rug the rat was lying on, and carried it outside to the drive way. She then proceeded to sweep it (yes, with a broom) down the entire driveway into the middle of the street. (Keep in mind this was very early in the morning, before the sun came out, and even before I went to work.) It boggles the mind, why she didn't just carry it all the way to the middle of the street? Can you imagine what the sight of a little old woman sweeping a rat down the driveway, into the street, looked like? My only hope is the neighbors weren't watchin...

As I sit here this afternoon trying to recover from my morning bike ride, typically the most difficult of the week, I thought I'd better take this opportunity to update everyone on what is going on! I really thought I had a lot more to say, but the longer I pondered exactly what to write, I found there was less and less to write about. So quickly I'll just update everyone on how Edie is doing. Fortunately Edie has been feeling much better as of late, albeit that's compared to how she has felt previously. She still has some problems relating to the chemo, and the dialysis, but overall, she is in much better spirits, and that is encouraging. Currently Edie is in the middle of her second course of treatment, with another potential 6 to go after this one is completed next week. That will end just in time for our planned trip to New Zealand this coming March. We're also hopeful the dialysis will only be temporary, as the Velcade and Doxil do their stuff, controlling the m...

Well this doesn't exactly meet the criteria of particular relevance, nor is it even close to being on topic, but I thought it worth the time to relay to everyone. The 5th sequel in the highly acclaimed (at least in my opinion) Highlander movie series is airing this Saturday, September 15th, on the SciFi channel, at 9PM eastern time. Briefly, if you're not familiar with the Highlander story, Highlander is an immortal within a race of immortals, vying to be the last living immortal. As the story line goes, there can be only one. An immortal only dies when his/her head is cut off, and every time an immortal kills another immortal, all the strength and knowledge of the fallen immortal passes to the victor in a ritual known as the Quickening. The saga started in 1986, with Christopher Lambert as the original Highlander Conner MacLeod, followed by 3 sequels, the last one released in 2000, and included a series , starring Adrian Paul as Duncan MacLeod, lasting 6 seasons ending in...