LIVING WITH MCL

It's hard for me to be critical of the measures that some will take in seeking a cure for their disease, since I have my own alternative medicine regimens and beliefs , but sometimes a post comes across my computer that just seems so over the top, I have to say something. Recently a member of the mantle cell lymphoma (MCL) e-mail group I subscribe to, posted the following to the group about an alternative treatment plan he is undertaking. [NOTE]I considered posting a response on this subject to the MCL group, but decided against it. Since my diagnosis, I have believed it was all the vitamins, supplements and other unnatural-natural things that my wife and I took for a long time , which caused, or at least contributed to our illnesses. So rather than post to the e-mail group, where emotions can run high sometimes, I decided to post only here. While my intent is not always to spark controversy, it is always meant to promote thought.[/note] Presently my NMD [Doctor of Naturopathic M...

And it is pretty much jibberish to me. I spent a lot of time analyzing the report, and about the only thing, of any significance I discovered, was the plasma cells are approximately 10% to 15% of the bone marrow. That doesn't bode well for a lesser diagnosis of MGUS (monoclonal gammopathy of unknown significance), but it is still a small enough amount, it can lead to a less severe diagnosis of indolent or smoldering MM. Then there is the urine protein analysis, which couldn't be evaluated due to the limitation of the agarose gel elecropheoresis procedure. And for those that are interested, agarose gel, as explained by Susan J. Leclair, Ph.D., CLS(NCA), Chancellor Professor, Department of Medical Laboratory Science, University of Massachusetts, Dartmouth .... is something a lot like jello. It gives really good separation of the proteins but it doesn't photography well at all. So they saw stuff; they just can't keep a permanent copy of it. I think they need to do a d...

I never had such a sinking feeling in my gut, as I was driving my wife to Kaiser Sunset for her latest radiation treatment yesterday, and she told me her BMB was not negative. I'd been thinking this was going along so well, 5 treatments down and 17 more to go, before she was back to normal. Now that has all changed. It was the radiation oncologist who called with the BMB report, and indicated that he would be increasing the dose of radiation but for less time (not sure the reasoning behind that), and when her oncologist gets back on Monday from vacation, they would discuss what other additional steps would/should be taken. When I started this blog, it was meant to be an upbeat account of my trials and tribulations dealing with a diagnosis of Mantle Cell Lymphoma. Now it seems to be turning into anything but that. Everything is moving so fast there just doesn't seem to be enough time to absorb all the information available. Everything I have learned and espoused in some of ...

It's being the care giver that's the really tough job. And I should know, being both. When I was first diagnosed with NHL, I know my illness played on the sympathies of many people, none of it intentional on my part. Initially I didn't tell many people about my illness, because I didn't want their perception of me to change. Sure I had to tell my boss and some of my co-workers, because I needed a lot of time off work, but to make my illness widely known, I thought would be a bad thing. But as time went on, and others whom I did not inform some how found out, I didn't notice any of the overt changes in attitude I had expected. And any changes that did occur, worked to my advantage, for which I was a willing participant. Now don't tell anyone this, but as time went on, I even learned how to orchestrate sympathy to garner some benefit. After all, I'm sick, and while I really don't need sympathy, if I can garner some benefit from it, why not? It was ea...

I have been asked to contribute some of my "unique" insight as a patient, navigating the US health care system at the Medical Blog Network . I even have my own column titled A Patients Journey . It's my intent to post some of the many lessons I've learned, since being diagnosed with MCL, on the US health care system, health insurance, doctors, and patient advocacy. I might even throw in some random thoughts on two of my favorite passions, golf and cycling (Lance Armstrong style), plus adding some insights on learning how to enjoy life. I know that is pretty much what I am doing here (and that won't stop), but I also hope to use the larger audience to add some political spin to my ramblings, which I don't think would be appropriate here. I will of course cross post anything I feel appropriate to both blogs.

Well that was a fun experience, NOT! Starting with the trip to Kaiser Sunset which is on Sunset Blvd in LA. That's about 30 miles into heavy traffic. If you're from LA, you know how tough that drive can be, and if you're not from LA, just be happy you don't have to find out. Fortunately Kaiser runs a shuttle from various satellite locations to the Kaiser Sunset facility, so at least my wife (Edie) won't have to do that commute herself. As it turns out, she is scheduled for daily treatments, Monday thru Friday, for the next 5 weeks. This came as quite a shock, as Edie was expecting 2 to 3 treatments. I'm not sure what I expected, but it sure wasn't anywhere close to 25 treatments. As expected, the facility was a very nice and clean facility, and the doctor was very nice and very young also. He tried to paint a not so dire picture of the treatment, but I knew better. And rather than bore you all with the particulars, I'll just tell you that there a...

Well the results are in from the biopsy on the T2 vertebrae. It's plasmacytoma! The oncologist described it as a low grade cancer that is easily treated by radiation. Well I'm not sure that treating anything with radiation is easy. What she didn't mention was that it's called plasmacytoma when it is localized in one spot, and multiple myeloma when in multiple locations. So today the doctor is going to perform a BMB to check for the spread of the disease, and tomorrow she has an appointment scheduled with the radiation oncologist. This certainly has served as a wake up call for me. With my MCL progressing so slowly, I almost feel as though I am not really sick, and this gives a lot more credibility to my post of a couple of days ago, The Future - It's not all it's cracked up to be If there is to be at least one silver lining in all this, it is the health care provided by all the professionals at Kaiser Permanente. The dedication of everyone and the effort ...

But it wasn't my fault. I am a victim! It appears that my last post, Fatigue Part II - Maybe it is Real , actually was an April Fools joke. I was duped because I first saw the posts on GoozNews and Schwitzer Health News Blog on March 31 st . IMO, it isn't a very good April Fools joke if it is played the day before, and unfortunately I'm old enough to remember Chronic Fatigue Syndrome, attributed to Epstein Barr Virus, afflicting several elite female cyclists back in the 80's, which made the report sound plausible. Oh well, such is life. I don't think it will affect my lymphocyte count, and I did learn a very valuble lesson. In the world of the blogosphere, don't assume April Fools jokes only come out on April 1 st .

Or it's actually Motivational Deficiency Disorder, MoDeD (pronounced Mo-Dee-Dee) for short. In a report this week by Roy Moynihan who reports for the British Medical Journal Austrailian scientists may have come across the reason for extreme laziness . The condition is claimed to affect up to one in five Australians and is characterised by overwhelming and debilitating apathy. Neuroscientists at the University of Newcastle in Australia say that in severe cases motivational deficiency disorder can be fatal, because the condition reduces the motivation to breathe. Neurologist Leth Argos is part of the team that has identified the disorder, which can be diagnosed using a combination of positron emission tomography and low scores on a motivation rating scale, previously validated in elite athletes. "This disorder is poorly understood," Professor Argos told the BMJ. "It is underdiagnosed and undertreated." Who knew? Maybe I have MoDeD, from my attempts to become a...

In the past there has been a lot of discussion of fatigue on the various newsgroups I subscribe to. It is listed as a symptom of lymphoma and leukemia, so there is no doubt that many people experience it, but how do you know if it is really fatigue, or just a case of depression due to being diagnosed with a terminal illness? I have heard many complain of fatigue, to the extent they are unable to perform as they have in the past. They tire easily, and just have a general sense of malaise, even when blood counts are within normal ranges. Most attribute it to their disease. Others, such as myself, believe that in the absense of a low hemoglobin count, it is more psychological, that is to say, it is more likely a product of depression. I know, because I am tired all the time. At least that's my excuse. I seldom want to do anything anymore. I pretty much have to force myself to go for a bike ride, jog or even play golf sometimes. Heck, I even hate getting up in the morning to g...

It's been over a week since my last post of any consequence, so in case anyone was worried about me, I thought I'd better get something down in the old blog. Nothing has really changed too much for me, although I am happy that Daylight Savings Time is fast approaching, but there have been a few things of note that have occurred, which are worth putting down in writing. The first thing was great concern over my wife's MRI, which she was finally able to convince her PCP she needed, due to some persistant back pain. Something showed up on the T2 vertebrae, and somewhere else, that caused the doctor to order a CT scan, bone scan, some additional blood work and a referral to an oncologist. This wasn't good. Edie has always been the strong one in the family, knowing how to deal with life's little crises, not me. I can tell you how to forge jet engine parts and evaluate failures, but when it comes to real life problems, I am pretty much a wooss. Fortunately the blood ...

Sometimes it's good to to take your mind of the stressful things in life. This juggling performance by Chris Bliss , did just that for me. I hope you enjoy it as much as I did.

Not really, but it sounded like a good title. I may even use it again. I've been trying to write something down for the last couple of days about what's been going on, but everytime I start something, I change my mind. Maybe this time will be the charm. For some reason I've been pretty moody ever since Saturday, and I'm not exactly sure why. It's probably mostly due to the weather, which has been cold and windy, making golfing particularly difficult, but it could be any something else. I never know for sure. The week started out pretty decent, with lobster dinner Saturday night with some friends, and a very nice Laetitia Block R Pinot Noir. The lobsters were fresh, but I think the cook (one of our friends) steamed them too long, so they were a little tough. Still it was a good night out. Then Sunday I had a great 55 mile bike ride into the hills of Newport Beach, despite the fact that it was colder than normal, and the sun only shined for about the last half ...

Well, I met my new oncologist yesterday. He was very nice, but it was still slightly uncomfortable, as it was a new relationship. He examined me, checking for lymphnodes, and overall health, and then we talked about possible treatments down the road. He wasn't up on lymphoma's as much as I would have hoped, but he was familiar with the work done at MD Anderson with HyperCVAD and autologous transplants, which I expressed my reservations about, and he was up on the work being done with Velcade. I also expressed my reservations about the use of Doxorubicin in any chemo protocol we might agree upon, which did surprise him slightly, but I think he understood. I was trying to plant the seeds for initial treatment with rituxan or possibly a splenectomy. I mentioned the results of the use of high dose rituxan, i.e. 750mg/m 2 , but he was not familiar with that study. I neglected to get his opinion on splenectomy's, which I will discuss with him in about 6 weeks. I have paper...

Well, after reading my last post, I decided to stop publishing my SPHealthCare blog. I realized that hardly anybody was reading it, and there are a lot more competent people out there doing the same thing. Remember what I said about too much information not always being a good thing. Besides I came to realize just how much time it was taking out of my day. I will still comment on the other blogs, when I think I have something important to say, but I'll let the others do all the hard work. I'm just going to play more golf, and ride my bike.

After I received the results of that fateful blood test in March of 2002, I spent hours on the computer, searching the internet, trying to figure out what a high lymphocyte count could possibly represent. The first things I found related to leukemia or lymphoma, so I kept searching, hoping to find other, less serious possibilities. I found many reasons for a high lymphocyte count, but when the results of my retest came back the same, and the immunophenotyping of my blood came back with a diagnosis of Chronic Lymphocytic Leukemia (CLL), I knew searching for other possibilities was a waste of time. Of course I couldn't let other possibilites disappear from my mind completely, so I did keep searching, but I began to concentrate my efforts more into investigating CLL and other leukemias and lymphomas. I was very much surprised by the wealth of information available on the internet. I was also surprised to discover the number of different types of leukemias and lymphoma, and is even...

As I sit here at my computer, staring outside at the overcast skys (a storm is brewing and expected to hit California sometime this afternoon or evening), and trying to motivate myself to go for a bike ride, I wonder, why am I doing this? Is it because I want everyone to know what I am going thru, hoping more people will feel sorry for me? Is it because I think it will benefit others, who may know someone in a similar situation, to better empathize with them? Or is it just an outlet for my feelings, and a diary of my thoughts? I choose the latter, simply because it would be selfish of me to think it was the first reason, and arrogant to think that I have the ability to help others. But like I have always said, you never know what you are capable of, or what affect you may have on others unless you try. I did manage to motivate myself for a 44 mile bike ride this morning after all. I worked a little harder than I had planned, since I did a pretty hard ride on Saturday with Velo Alle...

I'm a Lifer! To you, a job is what pays the bills. You put in your hours, follow the rules, and then go home. Occasionally, you consider quitting, but then you think of how bad the job market is and you reconsider. Whatever happiness you get, you get from your life outside the workplace. Relationships, family, hobbies, and outside creative pursuits are what really matter to you. You're probably taking this test at work because you don't have anything better to do. Talent: 41% Lifer: 59% Mandarin: 44% Take the Talent, Lifer, or Mandarin quiz.

This is always the time of year I hate the most. I'm sure I'm not alone in that belief, but that still doesn't make it any more reassuring. This past week did, however, seem unlike any other I can remember in a long time. It's not so much that it was cold in the mornings, which is typical most of the time for soCal, but its that the cold never seemed to mitigate throughout the day, making golfing and cylcing more difficult. I still managed to get in 3 rounds of golf on Wednesday, Friday and Saturday last week, although Saturday was somewhat difficult due to the added rain. Fortunately it only rained for a total of 3 holes, but the sun only shined briefly, and it never warmed up any significant amount. I did manage to ride my bike on Friday, but haven't ridden since then, and may just take off another couple of days to rest up. I was a little sore on Sunday, I hope from all the golfing I did the past week. The biggest problem I have right now is, I just don'...

Although the two topics are not necessarily related, I didn't want to do two posts. First, my wife found this one. This is old news, but since we're both big wine drinkers (mainly Pinot Noir's), I thought it was worth repeating. Whether the effects can be translated to humans is really a stretch at this point, since studies have only been performed on short lived species i.e. worms, fruit flies and small fish. Still, I figure anything to rationalize the enjoyment of wine has to be a good thing. Red Wine Ingredient May Delay Aging By Jennifer Warner - WebMD Medical News A new study shows an ingredient found in red wine, ...previously shown to prolong the life of worms and fruit flies, may extend the lifespan of vertebrate animals like fish and possibly humans. Researchers found adding resveratrol, an organic compound found in grapes and particularly in red wine [more concentrated in Pinot Noir] , to the daily diet of short-lived fish prolonged their lifespan and delayed...