LIVING WITH MCL

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, ...

For those long time and faithful readers of my blog, you may have noticed I have renamed this blog. The more I thought about it, the more I realized the original name, livingwithmcl.com, was just not appropriate, so a new name seemed long overdue. I think Living with MCL , is a much better description of what this blog is about. You might have also noticed that I added a new link, just to the left of the email me link above, entitled My Journal . It seems that I have been hesitant to post many things to this blog (for fear that I will bore people and turn them off), that go on in my daily life, that I feel are important, at least from the perspective of keeping track of how normal, everyday occurrences affect or are affected by my MCL. So I need to have another outlet, in order to express all my thoughts, anxieties, experiences, inspirations and what every else comes to mind during a typical day. And while this is intended principally to satisfy my own selfish needs, I have no obje...

Whether it's when you arrive at work in the morning, or meet someone on the street, the first thing you do is exchange greetings. Typically, after you've said "hello", "good morning" , or some other standard address, most people will also add "how are you doing?" . You may not even know the person, but still that's the usual greeting. When that happens to me, I typically respond fine or wonderful , or something else along those lines. That isn't always the case, but I don't believe people actually expect an in depth or negative response, when they greet you in that manner, so with a few exceptions, I put on that happy face, and pretend there is nothing wrong. But that is what is so great about having your own blog. You don't always have to put on a happy face. You can write about your actual thoughts, without worrying about boring someone to death with your problems. If people are interested they can read on, or they can choose...

Just not for me yet, but rather for Edie. I knew I shouldn't have gone with Edie to her oncologists appointment last week. ( I'm not as superstitious as I once was, but ..... ) The results of her latest tests, showed a relatively rapid progression of her multiple myeloma. I just wasn't ready for her oncologist's suggestion she start treatment so soon. She offered two options, Vincristin, Adriamycin and Dexamethasone (VAD) or Thalidomide and Dexamethasone, neither of which sound very appealing, although the latter, seems the least offensive (for lack of a better word). Adriamycin is very hard on the heart, and for that reason is lifetime dose limited, and Vincristin, I just discovered, can cause irreversible neuropathy, so it looks like we (at least me) are leaning to the Thalidomide + Dexamethasome protocol, not that it doesn't have it's problems, but..... There just aren't any good options when it comes to deciding on a treatment plan for treating cance...

When I awoke this morning, the temperature was a surprisingly balmy 59 o F. It was surprising because the temperature had been in the high 30's to low 40's the last couple of days. This unexpected twist sure put a crimp in my plans to use the cold (the #2 excuse not to ride) as the reason I wasn't going to ride my bike this morning. Plus it wasn't raining (the #1 excuse) either, so I wasn't sure what I was going to do. But, as I sat here at my computer, checking a few blogs I had commented on and reading the latest news, I heard a rustling outside the house that was unusual for this early in the morning. It was the wind, and it was blowing at a relatively strong clip, 10 mph according to the weather channel. Now that may not sound like a lot, but it is unusual for southern California. The winds are usually relatively calm early in the morning, and don't pick up until later in the day, which is the principal reason I always try to ride my bike early in the...

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!