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 .