LIVING WITH MCL

I know I've blogged previously on how events tend to take on added significance , when you've been diagnosed with a terminal illness, but on a recent trip to Dallas , I learned it's not just events that become more significant. I have also become more aware of my surroundings as well. When I flew into the Dallas/Fort Worth airport (DFW) last week, I took notice of just how much open land there was. Now I know that isn't really news, nor is it something I never realized. I know there is plenty of open land in this country everywhere, even in California, but what I never really thought about was how little open land there was approaching the Los Angeles International Airport (LAX), as compared to the approach into DFW. What also caught my attention was how few golf course there were, visible from the air, as we approached DFW, compared to the number of golf courses, visible from the air, approaching LAX. I would think, with all the open land surround DFW, I would have...

A couple of weeks ago, I started the paperwork to switch my aunts IRA, currently in a Floriday bank, to another bank in California. When my aunt lived in Florida, she had executed a Durable Power of Attorney giving me authority over all her financial affairs, as well as executing a Living Will, so I thought I would have little trouble transferring her account. What I didn't realize was that Durable Power of Attorney, while it may have been valid in Florida, isn't valid in the state of California. At least it doesn't give me the authority to act on her behalf in regards to certain financial transactions, I thought it would. So I just logged on to LegalZoom.com to execute a new Durable Power of Attorney for her to sign. I also decided it would be a good idea to execute a new Living Will for Sylvia, since I doubt the one executed in Florida is valid in California. And while I'm at it, I plan on doing the same for Edie and me. I would also suggest that everyone reading t...

After a near catastrophe on Friday , I was able to finally complete the upgrade to v2.1 of Wordpress blogging software , without a hitch. I didn't think I did anything differently today than I did yesterday, but obviously I must have. I only wish I knew what it was I did do differently. I won't worry about it too much though, instead I'll get back to some real blogging.

This is certainly way off topic, but I thought this post from David Arenson on the Iraq war , was so fitting, it was worth posting a link to it here . David has a great knack for writing, and I think he expresses almost perfectly how I, and I'm sure a great many more Americans, feel about this war and our political leaders. It's definitely worth a few minutes of your time!

Wordpress just released a new version of it blogging software (version 2.1), which has a lot of features I would like to have, like auto save, a tabbed editor, spell check, and a host of other features. So I decided to upgrade to the this latest and greatest version. I followed all the instructions, including backing up my database and deactivating all my plugins, and then proceeded to install the new software. Well, it didn't work. When I went to the upgrade screen, all I got was a white page. There was absolutely nothing. I thought all the hard work I had done would be lost. I then tried deleting everything, and reinstalling, but still nothing. Fortunately I still had a copy of the 2.0.5 version on my computer, so I again deleted the new installation, and reinstalled version 2.0.5, and fortunately everything was restored to it's original condition. I may try again later, after doing a little more investigation into what my problem may have been, but for now I rest easy th...

Sorry Ira , but it's not as if there aren't enough books out there already, on what to do when you're diagnosed with a "devastating diagnosis"? Lance Armstrong has one out, It's Not About the Bike , Neil Ruzic wrote one Racing for a Cure (which he gave it away free, when he was alive), and Barbara Lackritz (AKA Granny Barb) wrote one titled Adult Leukemia: Comprehensive Guide for Patients and Families And now there is one more. Jessie Gruman , PhD is promoting her new book After Shock . The author, according to an excerpt published in Parade Magazine , is well qualified to write such a book, when she states I am all too familiar with this process. Four times, I have been diagnosed with life-threatening conditions Four times she'd been diagnosed with life threatening conditions? And she's still alive? I'm not sure I want any advice from this woman. Why does she keep getting diagnosed with life threatening conditions, and is then mira...

Some things just transcend just about everything else, even the problems facing US health care, and todays AFC Championship Game was one of those times. Even I had given the Colts no chance after being down 21 to 3 in the 2 nd quarter, and had gone out to play with my new golf bag at half time. Boy was I ever surprised when I came back part way through the 3 rd quarter. First it was 21 to 13, and then 21 to 21, and after that it got even more exciting. Great game Colts! After Pittsburgh and San Diego, you guys were my 3 rd favorite team! :)

Most blogs don't have privacy policies. After all, why would they need one, especially when the blog or site is a public one. I know I never thought I needed one, but what happened last week got me thinking. Last week I received an email from a reader of my blog, requesting a comment, he made to an 8 month old post, be removed. He claimed the comment was being used maliciously against him. He wouldn't to tell me what harm was being done, nor how his comment, which I thought was kind, considerate and moving, contributed to that harm, but since a link to it appeared under a Google search for his name, he wanted it removed. At first I didn't want to remove the comment. It's not like a get a great many comments as it is, so when I happen to write a post that elicits more than one comment, it's like a getting a validation of my skills as a patient blogger. Removing it would just spoil that good feeling. After some thought, I relented, sort of. I didn't remove the ...

As many loyal readers of my blog already know, I pride myself in the fact that I take no medication of any kind, not even an Aspirin. (Although in extreme emergencies, such as the bicycle accident I had about a year ago , I have taken an antibiotic and an NSAID). But for the past 3 days, I have been sick. Nothing major, but I have been sneezing quite often, my nose is runny and stuffy and I have a minor headache. I don't really feel that bad, except for the headache, but what bothers me is, I don't seem to be improving. My aunt keeps asking what I am doing for it, to which I reply nothing, and Edie points me to the Benadryl, and says it won't hurt to take a few Advil. Well, I'm not so sure about that, but I did break down (or maybe I should say, I designated this an extreme emergency) and took two Benadryl last night. Although I did get a good nights sleep (went to bed at 6 PM awoke at 6 AM), it didn't really help much. All it did was dry me out totally. My mout...

I really doubt it, but what happened this evening, after I got home from my golf Men's Club meeting, just warmed the cockles of my heart. Shortly after getting home, the Emergency Department at Kaiser Permanente called in reference to my most recent blood work, I had done earlier this afternoon, in preparation for my appointment with my doctor tomorrow morning. They were aware of the fact that I had lymphoma, but still called to report my White Blood Cell (WBC) count was 81.9 with 98% lymphocytes. I was shocked, not only because 81.9 is about 20% lower than it was last month (which is a good thing), but with the fact that they bothered to call at all, and that they were concerned with the possibility I may be having a fever or chills or something else. My guess is it's actually an error, and my WBC hasn't dropped 20%, but even if it is an error, I thought that was very nice of Kaiser Emergency personnel, to take the extra time to review the report, and call me. In my opinio...

If you look at the bottom of previous post, you will see that the "Posted on" section is indented somewhat, when it should be aligned on the far left side of the page. Every other post is correct, but the previous one isn't, and I can't figure out why. So I am doing this extra post, because it bothers me so. I just have to know if it is a one time issue, or if the theme has some how been corrupted.

Fortunately I haven't needed treatment yet, but that doesn't stop me from thinking about all the potential treatments that are available to me. What seems to be recognized as the one of the most effective treatments for MCL, is a protocol known as HyperCVAD . Without going into too much detail, I'll just say the treatment is so severe, you have to be hospitalized for several days at a time when receiving the treatment. CHOP is another treatment, similar to HyperCVAD, but missing a few of the more potent drugs which necessitate the need for hospitalization. Still CHOP relies on Doxorubicin (the H in CHOP for Hydrodoxorubicin, or the A in HyperCVAD for Adriamycin), which is known to cause heart problems, and because of that is lifetime dose limited. I refuse to take that drug, for obvious reasons. Another lesser choice is a protocol known as CVP, which doesn't include the Adriamycin/Doxirubicin. Still it includes Vincristin/Oncovin (the V in HyperCVAD or O in CHOP),...

Edie started her treatment with Thalidomide and Dexamethasome yesterday, but what we never realized was just how tightly regulated Thalidomide use has become, and how many hoops she had to jump through to get the drug. Not only did she have to fill out various forms and sign disclaimers about the drug, but she had to fill out a survey initiated by Celgene (the manufacturer of Thalidomide), which had to be reviewed and approve by Celgene before she could be given Thalidomide. (It appears Celgene doesn't want a repeat of what happened several years ago, which resulted in birth defects attributed to Thalidomide.) On top of that, because Thalidomide is so tightly regulated, only one of the several pharmacies in the Kaiser Bellflower/Imperial complex is authorized to dispense Thalidomide, and the interesting fact that I refer to in the title, stems from the fact. The pharmacy chosen, Building D - Imperial site, was chosen because that is where the Dermatology Clinic is located, and Thal...

Medgadget has recently published its 2006 Medical Weblog Awards Nominees , and not only wasn't The Medical Blog Network (TMBN) nominated in any category, but neither was this blog, my blog on TMBN , nor My Journal , nominated under the Best Patient Blog category. And what's even more depressing is the High Point Regional Health Center Patient Blogs (HPRHCPB) site was nominated under the Best Patient Blog category. Who in the world nominates these sites? I doubt that it is anyone who reads them! At the HPRHCPB site, there are a total of 6 blogs, and the latest post by Brooke, on childbirth, was October 11, 2006. I assume that's when she had her baby. Joan, Mary and Dennie, Mini-Gastric Bypass, haven't posted since August 2006 (Joan - January 2006), and Amy and Perry, cancer patients, haven't posted since 2005. And to top it off, one of the blogs nominated in the Best Patient Blog category, GrrlScientist , as best I can tell, isn't even a patient. I would like...

As I look back over the past year, not a lot has seemed to happen of any consequence, at least not a lot good, and it certainly was not how I perceived it occurring when I was reflecting on 2005 . The biggest disappointment was Edie's diagnosis of Multiple Myeloma . And as if that wasn't bad enough, it looks like it is progressing at a fast enough pace, treatment is imminent. (Here I was diagnosed almost 5 years ago with lymphoma, and I still haven't needed treatment, nor see any in the near future.) I know, no one ever said life was fair, but some things just shouldn't be. On a good note, I have managed to stay accident free on the bike. (Knock on wood, I haven't spoken too soon since there is still one more day, and one more ride left in the year.) We did managed to get to Italy in 2006, which we had been wanting to do for years, but were a little disappointed in the whole experience. I had heard so much about Italy, I think I set my expectations too high. I ...

I know I have been as guilty as the next person, when it comes to having a chip on my shoulder at times. After all I'm sick, and I have that right. Don't I? No, not really. I don't have a monopoly on having problems. We all have problems, but typically they're not any one individuals fault. They may be the fault of our entire society, or simply the luck of the draw, so why do we insist on taking our frustrations out on each other? It started with Dave, from Delius Restaurant , when he blasted me , for posting a review , expressing how dissatisfied I was with the service and food, at his restaurant, two weeks ago. It seems he was more concerned that he got a bad review, than the fact that he had a dissatisfied customer. Then the other day I got involved in a discussion on syngeneic transplants , on the Multiple Myeloma group I subscribe to. Rather then go into any great detail, I'll just say that the conversation transgressed into what cancer is, i.e. an abnorm...

I just love Wordpress blogging software! There are just so many things you can do with it, and best of all it's free. While a few themes can be a little tricky, with just a little work, modifying the appearance of just about any theme is really easy, even if you don't know any code. Plus there seems to be an endless supply of add ons, which make modifying the appearance and functionality of your blog a breeze. A week or two ago, I added a preview button, followed by the CAPCHA code, where you have to verify you are a human before you can comment (principally to reduce spam, which I was getting at a rate of 100+ a day), and today I just added a subscription button to the comments section. Now you can subscribe to the comments for any post, and receive email notification anytime someone comments on that post. You don't have to keep checking back for additional comments. And you don't even have to comment to receive follow up comments from others. You can also receive n...

A week or two ago, I posted about Edie possibly needing treatment very soon. Well it seems that time has come. Yesterday, Edie had her second opinion consultation with Dr. Brian Durie at Cedars Sinai Hospital, and he concurred with the conclusion of her current oncologist at Kaiser, Dr. Simmons. (One good piece of news we have found is that Dr. Simmons is the oncologist to be seeing at Kaiser for myeloma.) We have decided to go with the Thalidomide plus Dexamethasome protocol, which I believe is delivered in pill form. That doesn't make it any less severe a treatment, but it does make it easier to take. It also leave lots of doors open for future treatments. All that remains now is securing an appointment, with Dr. Simmons, so that she can begin treatment. Oh yeah, and making sure we get the most out of the next few weeks in the way of culinary pleasures. Among other things, Dexamethasome wreaks havoc on the taste buds. Not sure what Thalidomide will do, but we know it can...

When you're sick, and you know your time is even more limited than most, you expect more out of every endeavor you pursue, and when something doesn't pan out like you expect, your disappointment is always compounded. Our trip to Italy in September, was one example, and last nights dinner at Delius Restaurant was another. Every Christmas the chapter of the professional organization I belong to, ASM International , and for which I am the chairman, holds it's annual dinner for executive committee members. For the last 4 years, we have held it at Delius Restaurant in Long Beach, and for the last 4 years, it has always been great, but this time it was a tremendous disappointment. For those unfamiliar with Delius , it is a prix fixe dinner restaurant with only one seating per night. Seven courses are served, from appetizer to dessert, including a selection of cheeses. Business has apparently been quite good for the owners, Dave and Louise, as they are moving to a new location...

I just received an email from a fellow MCL'er this evening, who is being prepped for a Stem Cell Transplant (SCT). He didn't mention what type of SCT, i.e. autologous, non-myeloablative (mini-allo) or myeloablative (full-allo), but I am guessing he is going for the non-myeloablative, since he is 70 years old. The other two require very high dose chemotherapy, which is difficult for even the youngest and fittest individuals among us to endure. While I never enjoy hearing about the troubles others are having, I certainly appreciate it when someone writes to me commenting on my blog, and telling me what a "great" attitude I have. (Oh, if only the latter were true more of the time.) Sometimes it just takes a jolt from some fan (so to speak), or a poster to one of the several lymphoma/leukemia message boards, which I hesitate to visit so frequently anymore, talking about their problems, to make me realize just how lucky I am. But why does it take an email from someone, ...