LIVING WITH MCL

The good news is Edie's Serum Free Light Chain reading dropped to 14 from 16, which at first glance means the Thalidomide is working. Of course, one test does not a trend make, so we really need to do another test, in a month, to see if the trend continues. Still it is encouraging, and now Edie has decided to reduce the dosage of the Thalidomide to 75 mg per day from 100. I'm not so sure that is the best idea, but since the side effects are causing other problems, it is at least worth a try for a month. And now for the bad news. On the way home from work this evening, Edie ran into a tow truck and dented the hood of her car. It isn't catastrophic, but in my attempt to fix it, I did so in such a way that now I can't get the hood open, to try an fix it some more. (Fortunately, she didn't cause any damage to the tow truck or herself, except emotionally). I only need to be able to open the hood, and have it look somewhat respectable, so I figured I would take it into

I just made reservations for the International Pinot Noir Celebration (IPNC), in Oregon at the end of July. I even made reservations at a local B&B. I typically don't like making such plans so far in advance, especially when I have to pay for everything in full at the time, for fear that something will cause us to change our plans. (Remember I am very superstitious ). But this event appears to be particularly well attended, and attendance is limited. Plus the first three B&B's we chose to stay were already completely booked, so we decided it was best not to take any chances, and make the committment. So if anyone else is going to the event, I hope to see you there, and if you think you might like to attend, I suggest you get your reservations in early.

I'm a metallurgist. I even have a degree in metallurgical and materials engineering to prove it, and at one time in my career that was all I had to worry about. That, however, was when I worked for a larger company. Now I work for a much smaller company, and as others who may also work for smaller companies know, it is not unusual for one individual to perform more than one job. At the company I work for now, our president is also the chief engineer, our production control manager is in charge of maintenance as well, and in addition to being the company metallurgist, I am also responsible for quality and planning. I never complained before, because I have always been able to perform all those functions, with little if any problems, but as the old Bob Dylan song goes, the times they are a changin' . With the advent of AS9100 (comparable to the automotive industry's QS9000 ), the quality portion of my job has become considerably more difficult, but most of those problems a

When I was first diagnosed with MCL, one of the first articles I read was by an eccentric doctor, Arthur B. Robinson , who reported on a case of supression of squamous cell carcinoma in mice , simply by restricting nutrient intake. It was that report that caused me to eliminate all vitamins and supplements, restrict my dietary intake, and increase the amount and intensity of my exercise routine, but after losing about 40 pounds, and seemingly stabilizing my blood counts, I have pretty much "fallen off the wagon" lately. Now I'm not sure if it was the eating, or the higher intensity exercise which seemingly helped control my MCL, but I decided restricting my diet, of everything I love to eat and drink, was just too extreme. So I decided it was the increased exercise that did the most good, and for the past month, I have again increased the amount and intensity of my exercise. So far this month I have ridden over 530 miles (which is the most I've ridden in a February s

Lately (and as I previously posted ), I seem to be stuck in a rut, having very little interest in doing many of the things I used to enjoy doing. Eating, drinking wine and even golfing just don't seem to generate the same enthusiasm they once did. Part of the reason is my concern for Edie . Her treatments seem to be taking a toll on her taste buds and appetite, leaving her less enthusiastic about eating and drinking wine. (it's no fun drinking wine by yourself.) Then there's the uncertaintly I face, as treatment time appears to be approaching ever so rapidly for me , as well as the fact my golf game sucks! But mostly, I'm just tired. I'm tired of the polarization of America. I'm tired of the influence pedaling by special interests, looking out only for what is best for themselves, rather than what is best for the country. I'm tired of being identified as living in a red or blue state, and labeled either Republican (conservative) or Democrat (liberal). I

In an attempt to combat the general feeling of malaise I have been experiencing over the last several days, I decided to splurge , and treat myself to a new pair of DMT Flash cycling shoes . These are some really nice shoes, with carbon soles (for stiffness), and the softest, seamless leather uppers, making these the most comfortable shoes you can imagine. I just couldn't resist. Even at $220 (normal retail $350), which is twice what I would normally spend on shoes, and is more than a lot people would spend on an entire bike, they are still a bargain. And besides, I'm worth it. I even went and purchased another set of pedals, just in case I decide to treat myself to a new bike as well.

Over just the past week, I have had no less then 6 new people register / subscribe , to receive updates, for my blog postings. And I have just received notification of another registration, literally as I am writing this post. It just seems odd, so many registrations would occur in such a short time frame, especially when all but one (with a domain name of 16girlshogtied.info), and maybe one other, appear legitimate. Is my blog really getting that popular, just at the time I am in a rut, and have so little to say? Or have a group of internet spammers found me, and are plotting some nefarious attack on my blog? I have noticed a greater influx of spam comments lately, but not from any registered users. So.... Fortunately my spam filter plugins, Akismet and Spam Karma 2 have been doing their job, unlike my Subscribe to Comments plugin, which doesn't seem to work properly. I'll keep you posted! :)

And I can't seem to come up with anything to post about. Ideas keep popping into my head, but before I can get them down in writing, they disappear. I can easily rationalize the reasons for this, like worrying about Edie, and the possibility I may need treatment soon. It could even be the weather (although that seems to be improving finally), but none of that makes it any easier to deal with. Even playing golf, eating and drinking fine wine, doesn't impart the same pleasures they once did. The only thing that can still get me going is riding my bike, which I attribute to the fact when I'm on my bike, I'm exerting so much energy, and I am so focused, that for the time I'm on the bike, I forget about everything else. The only problem is, I can only go so hard and for so long, and eventually have to return to reality. So here I am, back in reality, with nothing to say. Hopefully that will change soon!

While it appears my absolute lymphocyte count has stabilized, that is the only bit of good news. First it was my platelet count dropping about 10% to 195 thou/mcl (the lowest it's ever been), then it was my Lactate Dehydrogenase (LDH) rising to 141 IU/L (the highest it's been), and now my Beta 2 Microglobulin (B2M) rose to 2.98 mg/L. At least the platelets and LDH are still within the normal range, but that is not the case for my B2M. The lab didn't report the reference range, but I know 2.98 mg/l is getting up there, and is well above normal. I'm sure very few, reading this post, have any idea of the significance of these three tests, so to simplify, I'll just state they are an indication of disease progression. The only question now is what to do? I'm still feeling fine, and certainly don't want to begin treatment any time soon. There are too many other things going on, including worrying about Edie, and how her treatments are going. But at the same

I just got off the phone with a reporter from ASAP . ASAP is AP ’s new multimedia service featuring original content designed to appeal to under-35-year-old readers She was doing an article on bloggers dealing with health care issues, and thought my blog was interesting. I admit I was surprised, when she first approached me about being a part of the article, since I never thought too many people found my rants interesting, nor did I think that many people would even find my blog. (I guess my numerous comments on various health and health care related blogs were more effective than I thought.) Among other things, she asked why I got into blogging, if I had any feedback from others, and if I was concerned about putting too much information on the internet. I responded as best I could, but now that I have had time to reflect more on her objectives, I think I left out some important thoughts. Oh well, if she keeps up with my blog, she can ca

Well for the second month in a row my absolute lymphocyte count was down to around 80K, which is 20% lower, and where it was back in June. Under normal circumstances, I should be happy about that, but the percent lymphocytes is high at 97%, and this was the first time my platelets dropped below 200 to 195. They had never been below 218 before. (Low platelets is the first sign of bone marrow failure). That's still well within the normal range (140 to 400), but is reason for concern, especially since my spleen is noticable, and can be annoying at times. (The spleen has also been known to collect and destroy platelets, necessitating removal.) There is too much too worry about if you let it. So I won't, at least for now. Of course if next months trend is in the same direction, I may have to start worrying. :(

And there are no guarantees it won't get even shorter. I became keenly aware of that fact almost 5 years ago, as did my wife a year ago, and yesterday, so did Becky's brother-in-law. (And this comes on the heels of being informed of the death of a bicyclist, two weeks ago, hit by a car on Colima Rd, in Whittier, in an area I frequently ride my bike.) As I was driving home from work yesterday down Pacific Coast Highway (PCH), traffic was slowing to view, what appeared to be a very bad accident, involving a motorcyclist, on the opposite side of the road. I even managed to sneak a quick glance, which I don't typically do, to see a person lying face down, stretched out on the ground. It certainly wasn't a pleasant site, but I managed to quickly put it out of my mind, and continue on my way. It's not that I am a cold, heartless person, but it isn't at all uncommon to see accidents, or hear of others dying or being seriously injured in traffic accidents. It's ju

Well, it doesn't look like the 50 mg of Thalidomide per day, coupled with 40 mg of Dexamethasome per week did any good. Not that we really expected it to do much, but one can always hope. 50 mg was just a starter to get Edie used to the drug. So last Wednesday, Edie's oncologist increased the dosage to 100 mg. Hopefully we'll start to see some change in the progression of the disease, and not just an increase in side effects from the Thalidomide, which seem to be only slight so far. Of course an increase in side effects may actually be a good thing, since it is a signal the drug is working. I liken it to graft vs host disease (GVHD) after a stem cell transplant. In that case, GVHD is a good thing, since it is an indication the transplant is taking hold. Of course, the GVHD must be controlled, or it could destroy all the healthy organs as well, which could have severe consequences. It's a tough road to follow, when the thing you fear the most, GVHD, is exactly the same t

This morning, I went and helped out, inspecting bikes, at the kick off ride for riders participating in the Leukemia and Lymphoma Society - Team in Training Tahoe Century (100 mile bike ride). Two years ago, I coached one of the century events, but haven't coached or participated in an event since. So when I was asked, I was happy to help out. I mainly did so, because the coach of the new Tahoe team, was one of my mentors, when I coached, and I felt obligated. Not that I wouldn't have helped out, if he hadn't been a mentor, but I haven't been asked to do so, since I participated as a coach. My experience coaching, even though I had high expectations, did not pan out as I had hoped, but it had nothing to do with the participants. All the participants were great. I enjoyed working with them all, and even keep in touch with a few. It was the politics, that went on between the team event facilitor and the co-coach (that was a mistake), that soured me on the experience,