LIVING WITH MCL

I just came across this very informative website which I have also placed a link to in the side bar. Dr. Hesham Attalla MD, PhD, from the Netherlands, has managed to break down many of the complexities of medicine in way that even mere laymen can comprehend. I found his piece on Cytokins very informative, but there is information for everyone. I recommend it to everyone.

If there was any doubt before, it was all wiped away this morning. When I awoke, the thermometer had reached a frigid (at least for Southern California) 40.6 o F (4.8 o C). We usually don't get those kind of temperatures until late January or February. I just hope this isn't an indication of things to come. It could put a real crimp in my training. Besides the rain, cold weather is the only other acceptable excuse to stay in bed, and not go for a bike ride. 40 o F is my typical cut off point, but while today was actually above the cut off point, I still decided not to ride. In anticipation of taking Edie to her oncologist appointment this morning, I did a hard workout on the computrainer yesterday, followed by weight training at the gym, and a 15 minute run on the tread mill, so I had a legitimate excuse. (I still may go to the gym later for a life cycle workout or run on the treadmill, that is if I don't decide to go golfing instead.) So here I sit writing some

About two months ago, I posted about how a fellow blogger , who has CLL, nearly always relates his post to his CLL. When I started this blog a year ago, I talked about my disease, and many of the problems I encountered along the way, not so much because I felt any sicker back then, but because I had something to say. Now I seem to be running out of those "pearls of wisdom", and tend to post mostly about my day to day life, as boring as that may be to some. The reason for that, I have come to believe is, I just don't feel sick. I haven't had any treatment yet, and there is none anticipated in the near future, so how can I possibly talk about being a patient? I doubt that many people, if any, would consider that a bad thing, but as a patient blogger over at The Medical Blog Network , I feel as though I am shirking my responsibility, when I don't write about how it feels to be a patient. It also makes me jealous of those other patient bloggers, in a perverse sor

Here I was, all siked up over people learning of my blog, and what emotions might be stirred up from it, as it turned out, Thanksgiving dinner with our nieces and nephews can best be described as uneventful. While many more people are aware that I have a blog, not everyone is aware of the content, nor do they seem interested enough to read it. It appears, even Naomi (see my last post ) failed to inform anyone just yet, since the two people who I would have expected Naomi to say something to, did not give any indication they talked to her, when I met them for a bike ride yesterday morning. So now I don't know whether to be relieved or disappointed? Maybe I'm not psychic after all! :)

It was only yesterday that I wrote about one of Edie's nephew, who we hadn't told of our health problems, discovering my blog, and thinking this may be a sign of things to come. And no sooner do I mention that, then Naomi ( one of the old gang , who I have mentioned in previous posts ) sends me an email today, saying she was one of those who never bothered to check the web address in the signature line of all my emails. I suspect she wasn't so much the one to discover it, as it was Mike, her boy friend, who actually uncovered it. Of course I have been known to be wrong on occasion in the past. The thing is, Mike is also a Non Hodgkins Lymphoma (NHL) survivor, and he was recently in the hospital due to complications from treatment he was receiving for his lymphoma. I had sent him an email (and yes, I did visit him in the hospital also), before I knew he was in the hospital, wishing him well. And yesterday, Mike got out of the hospital, so I have a sneaking suspicion tha

It was about this time last year when I registered my domain name, and I wrote my first post on December 5, 2005, and finally a family member, on my wifes side who we had not told about our health problems, managed to find out on their own. You (at least I did) would think, since every email I send out has the URL for my blog, plus all the emails that my wife and I send to friends and relatives is suffixed with @livingwithmcl.com , it wouldn't have taken almost a full year for someone to finally be curious enough to investigate. But it did! Yesterday, Edie received a call from her nephew, who lives in the valley, to inform us that his sister (Edie's neice), who also lives in the valley, discovered my blog. It came as quite a surprise to them. It should also make for an interesting Thanksgiving dinner, when we go over there Thursday evening. So what is it that made her check that domain name? If it was curiosity, I would have thought she would have discovered it long ago.

Yesterday, I posted about an outbreak of hives I had after a lunch time run, and how good it felt to scratch. Well this morning at 3:30 AM I was awoken by another outbreak of hives. This time it started on my left forearm and hand, it then spread to my right hand and forearm. After a little time it subsided in those areas, but has now spread to both hips and one big hive on the top of my left foot. Well, while it certainly still feels good to scratch, at the same time, the relentlessness of the attacks are getting to be extremely annoying. Oh, and to top it off, my wife mentioned that I need to watch for any indications of an outbreak in my throat, as if I don't have enough to worry about already. I have now come to the conclusion, that there may be such a thing as too much of good thing!

Today at lunch time I went for a run. I've been trying to supplement by cycling with running, since it's harder to get motivated to ride in the winter time. A 20 mph wind chill factor just doesn't make for a very enjoyable ride when the temperature is already below 50°F. Even the sun doesn't help. After I finished my run through the sod farm and strawberry fields, near where I work, I noticed my quads were starting to itch. I didn't think much of it at first, but as it started getting worse, I looked down, and I noticed my quads were covered in what I guessed were hives. There are a number of things which can cause hives, two of which I have, i.e. allergy to pollen and leukemia (technically lymphoma, but no doubt related), plus it was a bright sunny day, and I do tend to sweat a lot, two other factors which can contribute to hives. Anywaze, to get to the subject of my post, as the itching increased, I had no choice but to scratch the affected area, and I can t

I think everyone should be required to travel to at least one foreign country. It's important for everyone in the world, to experience first hand how the rest of the world lives! You can never gain a full appreciation of how the rest of the world thinks, how they look at life, and the cultural differences that exist in the world, unless you experience it first hand. My wife and I have been to Tahiti, Fiji twice, Bonaire , England, France and most recently Italy . I've also been to Okinawa, Japan (where I lived for a year and a half while in the Army), as well as Hong Kong, Taiwan, the Phillipines (when it was safe for Americans to go there) and Saba . While there were some problems, for the most parts, the good points always outweighed the bad. And even the bad experiences represented a learning experience. Most importantly though, visiting other countries, gives you a greater appreciation of just how good we have it in the US, as well as pointing out some of the inequities

By now I'm sure that everyone has heard this news already, but that isn't the reason I am posting anything on it. The fact that he died of chronic lymphocytic leukemia is certainly pertinent to this blog, but what I thought was even more relevant was the fact that very few people, even among his co-workers, were aware of his illness. What makes some people, myself included, keep such a thing a secret? I know I had my reasons at the time, and while I don't go around announcing to the world that I am sick (unless of course you think of this blog as an announcement to the world), I don't try to hide it anymore either. Still the fact remains, that many people, who I am in continual contact with, do not know that I have Mantle Cell Lymphoma. I just thought that was interesting. I can consider myself in the same company as Ed Bradley!

they paint a much different picture . Even with the senate still up for grabs, and even if the Republicans should manage to maintain control of the senate, the tone has been set, and the American people have spoken. The status quo is no longer good enough. Now maybe we can get back to a time when fear and hatred weren't the overriding issues, used to divert attention from the real problems facing America, like health care reform, prescription drugs costs, and HOMELAND security (not Iraqi security). Now maybe we can get back to a time when compassion actually had meaning, instead of something used to promote a political and ideological agenda. Yes, I'm happy now, even though I hate the winter , but there is still a lot that needs to be accomplished, and major obstacles to overcome, but for the first time in a long time, there is "light at the end of the tunnel." My faith in the American people has been restored!