LIVING WITH MCL

And as expected, I'm not vitamin D deficient. However, neither do I possess an over abundance of vitamin D either.  My vitamin D level was at 31 ng/mL. Reference range being 30 - 100 ng/mL. Needless to say, I was very disappointed. With as much time as I spend outside riding my bike, I would have expected my levels to be much higher, but it sure makes the statistic, 77% of all Americans may also be vitamin D deficient , a lot more believable. I am certainly not happy entertaining the thought of having to take a vitamin D supplement. Being the cynic I am, I have a general distrust of the pharmaceutical and supplement industries, but there seems to be overwhelming evidence of the harm resulting from a vitamin D deficiency, including an additional risk of cancer, cardiovascular disease, and even immune-system disorders , lymphoma being considered in the latter category. So I've resigned myself to take a vitamin D supplement. My friend, and medical expert, recommended I take 2000 I...

That sure doesn't sound like such a long time, does it? Heck, the typical home mortgage is 180 to 360 months. Even some car loans are in the range of 84 to 120 months. But when you're talking about cancer survival it's an entirely different story. It is a long time. And I should know, because that's how long it's been since that fateful blood test that led to my diagnosis of mantle cell lymphoma (MCL). That's 100 months of living with a terminal illness, 100 months of blood tests (121 total) watching my numbers gradually degrade, and 100 months of stress, waiting for the next shoe to drop. But when I read the results of trials, which consider remissions of 6, 12 or 24 month as being good results, along with the numerous problems and complications experienced by others, I can't help but also think of 100 months as being a milestone. Especially considering I haven't had any treatment, and still feel like I'm in pretty damn good shape. I even rode my b...

Well, I would have to say there was near perfect weather in Santa Barbara this past weekend for the California Wine Festival. The skies were clear, and the temperatures ranged from the mid 60's to low 70's. It doesn't get much better than that, and it's the main reason we love southern [and central] CA so much. Of course, I can always find something to complain about. It's just this time, it won't be the weather. My biggest complaint was I didn't ride my bike for 3 days, and watching all the other cyclists riding along the beach, heading out for what was likely a brisk morning ride into the foothills, made me envious. Then there was the fact, the hotel we stayed in wasn't what I had expected. It was nice [sorta], and the price was right, but it just didn't have the class nor the ambiance of the Fess Parker Doubletree Resort , or even the Hotel Mar Monte , both of which were on either side of us. Oh, but so what! We didn't go there for the room, ...

I haven't been very philosophical in a great awhile, but a recent conversation with one of my wine drinking buddies has compelled me to do so now. We were discussing a recent 60 Minutes segment about people choosing to walk away from their mortgages , and allowing their homes to fall into foreclosure, because the value of their homes had fallen well below the amount they currently owed, despite the fact, in many cases, they could still afford the monthly mortgage payment. The conversation got a little heated, when I said I could understand the reasoning behind the decision. It's purely a financial one. Why continue to pay [and pay] for something that's no longer worth what you paid for it, or even what you owe? Why keep throwing good money after bad, especially when it's cheaper to just stop paying? There has to be a time when it's best to just cut your losses and run [so to speak]. But my buddy felt, if you could afford it, you were morally obligated to continue ...

Well, I think I've managed to recover somewhat this morning, but that's exactly how I felt at the end of yesterdays bike ride. While it was only a 55 mile bike ride, there was 2775 feet of climbing (which is a lot more than normal), but the real problem was me being the weakest rider in the group, forcing me to step it up a notch so as not to embarrass myself too badly. The ride didn't start out that way, but after the first climb, about half of the original 20 or so riders who started the ride, many of whom I consider to be of comparable ability to myself, decided to cut the ride short, leaving me alone with the much stronger riders. I guess I could have cut the ride short as well, but then what fun would that have been. As it was, aided by a few short cuts, and the fact the group didn't push the pace as hard as they could have, I think I made a decent showing, not finding myself too far behind at any point. But that extra effort did take its toll. I spent the last 15 ...

I had an appointment with my oncologist on Tuesday, and the one thing of note, besides the fact my numbers were essentially unchanged, was she made mention of the benefits discovered in cancer progression by increasing Vitamin D levels. She researched other patients of hers, and discovered they were essentially all Vitamin D deficient, and recommended taking a Vitamin D supplement (1000 IU per day). Considering the constant reinforcement [hype] by the dermatology lobby, and sun screen manufacturers, of the hazards of extended exposure to sunlight, the major source of Vitamin D, and me being the uber cynicist I am, I find that fact very believable. She also knows I'm not much into taking supplements, plus I do get a lot of unprotected sun exposure when I ride my bike, but she put it out there for me to at least investigate. So I did some research on the subject, and came across this very interesting article on the benefits of Vitamin D, performed at the Mayo Clinic , in newly diagno...

At last, a day that went off without a hitch. Arrived at the airport at 6 AM in plenty of time for our 7:35 AM flight, which even managed to leave on time. The best part was Delta had sent our bags ahead last evening, and they were waiting for us at baggage claim at LAX when we arrived. No waiting or fighting everyone to grab our bags. Delta finally got it right this time. It feels so good to be home! Especially since we were out of green tea.

How difficult can it be to get an aircraft off the ground, on time, when the aircraft arrives the night before? Well, leave it to Delta Airlines to accomplish the near impossible. Not only did the aircraft leave late from Roatan, but it left so late, we missed our connecting flight in Atlanta, which had a 2 hour cushion. So here we are in the Atlanta airport Double Tree hotel (courtesy of Delta Airlines) spending yet one more night away from home, awaiting our 7:35 AM flight home tomorrow morning. Hopefully by around 10:00 AM tomorrow, we'll finally be able to put this ordeal behind us.

As it turned out Delta Airlines (the airline we are flying) was the only airline not flying in or out of Roatan today, so we're stuck here [Roatan] for one more day. At least they decided to fly in an additional, and bigger, aircraft tomorrow morning to relieve the situation, and fly everyone out of here.  Unfortunately they didn't give Edie and me, and one other in our group of 8, our business class tickets for the Atlanta to LA leg, despite having paid for them. Everyone else in our group got their business class tickets, but for some reason Delta decided the two sickest people on the airplane didn't need theirs. Go figure. Anyways, I complained, and of course played the sympathy card, and I think I remedied the situation. At least I'm hoping that's the case. I didn't get a 100% written confirmation, but the Delta customer rep (Jenna) assured me it was fixed. I'll know tomorrow for sure when we check in. I'm not sure what I'll do if it isn't fi...

Here it is our last day on Roatan, and tropical storm Alex is bearing down on us.  It's raining, the wind is blowing at a brisk clip, and the seas are a liitle rough, even in the normally tranquil lagoon, and we've just been informed our flight to Atlanta has been canceled. Our only hope for now is the Continental flight doesn't make it in this morning, so we'll at least have a place to stay tonight. Oh well, such is life.  [BIG SIGH]

I used to think there was no greater sensation than scratching an itch, but after spending 5 days in Roatan, Honduras I've discovered something at least equal to that. And that is entering an air conditioned room after spending any length of time outside in 90F heat and 100 percent humidity.  I'm sure it's possible to get used to, afterall there are millions who live in this type of climate, and profess to love it, but do they really? Or do they just have no other choice? Now don't get me wrong, Roatan is beautiful (at least where we are), the diving (the principal reason for coming here) is great, as is the resort (although the food is a little lacking), and it has been a fun trip, so far, but none of that changes the fact it's freakin' hot and humid here. If nothing else, it sure serves to remind me just how fortunate I am to live in southern CA.  I know I often complain about the weather in southern CA, with its continually changing weather patterns, but de...

Another person expressed some concern today, after my last post, that I may be starting treatment soon. Well, let me clear up any confusion. That isn't the case. It's just I get into these moods every now and then, when I can't help but question how much longer can I be so lucky? Especially when I look at Edie, and so many others in similar situations to me. Why have I been so fortunate to be so active, and not require any treatment for over 8 years, despite having a terminal illness? It just boggles my mind, and I find it difficult to believe it can go on much longer, but ............. Anyways, I had an appointment with my oncologist today to review my latest BMB and cytogenetic test results, and guess what? I have Mantle Cell Lymphoma. Actually I knew that all along, but if you remember back in April, I posted how my new oncologist was convinced I had Splenic Marginal Zone Lymphoma. Well, he's now convinced otherwise. We also discussed my low hemoglobin/fatigue, and ...

It seems the longer we go, the worse things get. The fiasco in the gulf is just one of many example.  We're so busy politicizing this, and trying to place blame and fault (often where it doesn't belong), little focus is being placed on the real issue, and that is an ecological disaster that will linger on [for uncountable years], creating unimaginable consequences from which the southeastern coast of the US may never recover, and place an undue burden on the rest of the country. [note]Another example is the politicization of physician reimbursements for medicare patients by the Republicans. But I'm not going to get into that. It would take up way too much of my time, and result in even greater aggravation.[/note] Then there are the customers [at work] who are becoming more stupid by the day, designing systems that are so complicated and convoluted, and change by the minute, they guarantee errors, and non compliance with requirements, forcing suppliers to change procedures...

Went to Tom Colicchio's venture in LA, Craft restaurant, last night, and I have to say I was pleased. I was a little skeptical after reading some of the reviews, and while it didn't make it to #1 on my list of favorite places to eat (that award still goes to a fabulous bed and breakfast in Chablis, France), I was not disappointed, and it exceeded my expectations. The one thing of note is sharing is encouraged here. All the food is served family style. Of course you could just put what you ordered in front of you, and dispense with sharing, but then you'd might miss out, as I will describe later. The only problem with that [as I see it] is you miss out on the presentation aspect of the meal, which is something I look forward to when I go out to eat. But what you lose in presentation is easily made up in flavor. Edie ordered the braised beef short rib, and I ordered the Alaskan Halibut, which I have to say was one of the most perfectly cooked pieces of Halibut I have ever e...

Just got the results of my bone marrow biopsy, and while nothing seems to have changed MCL wise, the report did indicate "Stainable iron is present" in the marrow. Despite the amount of stainable iron not being quantified, and my having started taking an iron supplement prior to the biopsy, there are other indicators (MCV having always been in the normal range for one, and no increase in my hemoglobin on my last blood test for another) which would lead even a layman, such as myself, to conclude I am not iron deficient. So it's back to the drawing board, and the realization that if I was stronger on the bike, as I originally thought, it was either because I was training more and with greater intensity, or the more likely scenario after considering today's ride, it was all just the "placebo effect", and I have not gotten any stronger at all. Oh well, at least I can stop going through all the gyrations I concluded were necessary to insure I was absorbing the ...

Cycling is a dangerous sport. I know, because I've had my share of accidents. Fortunately, the only thing I've ever broken was my wrist and thumb, about 25 years ago, but I have had my share of road rash along the way, and even a slight concussion in November of '05, which got me started on this blog. Since then I've been pretty lucky. I've had one or two close calls, but basically nothing [that I can remember]. Even the thought of an accident seldom enters my mind. That is, up until yesterday, when an accident occurred during the group ride. Saturdays is our normal pace line training loop (the Hammer Zone) around the streets of Seal Beach. It was a little unusual because we had caught the first [faster] group, and no one seemed to be pushing the pace. It was a nice comfortable 25 or 26 mph pace. There are a few spots where the pace always picks up regardless (usually around turns), so it's easiest if you move towards the front before those points, and then get ...

I was reminded recently of a quote by Eric Hoffer In times of change learners inherit the earth; while the learned find themselves beautifully equipped to deal with a world that no longer exists. Well what I want to know is, what happened to that world, and why can't I continue to live in it if I so desire?  I don't particularly like the changes that are occurring. Besides the fact the US is "going to hell in a hand basket" (which I won't get into here), work isn't nearly as enjoyable as it once was. Not that work was ever enjoyable, but since being purchased by PCC in October, things have changed in a way I'm not happy about. I can't put a finger on anything in particular, but the feeling is there, much like how the dynamics of the bike club I belong to have changed as well over the past few years. But worst of all, Edie's myeloma has reared its ugly head again, and I'm beginning to wonder, what's the point of anything any more? I...

It turns out, what I thought was the easiest BMB ever , has been anything but. I don't know what the doctor did, but these last few days have been down right miserable. At least there is no swelling in the area of the procedure, nor is there any pain to the touch, or even evidence of infection, but that doesn't change the fact something isn't right. It's been 3 full days since my BMB, and it's only now that I'm [barely] able to walk, without the aid of drugs. It's not been my policy to take drugs, but on Thursday morning around 1 AM, the pain was so unbearable, I relented, and took a Vicodin. Relief was almost instant, enabling me to get 3 hours of sleep, and even make it to work that morning. I probably shouldn't have gone to work, as I was still hurting a little, but the pain was tolerable, and there was some paper work I needed to finish. Plus it was pay day, so I decided to make the drive. I made it through the entire the day and evening (on that one...

That's a bone marrow biopsy (BMB) for the layman out there, and it wasn't nearly as horrific as I had expected. In fact, except for a little soreness right now (and getting worse with every passing moment), I would have to say it was uneventful. It helps to have a good strong doctor, and this was the first time I laid on my side, which may have helped. Now it's just a waiting game for the results expected by my next appointment at the beginning of June, but in the mean time results of my latest blood work were [somewhat] favorable. In addition to my hemoglobin increasing from 11.2 to 11.7 g/dL and my lymphocytes still showing a favorable trend (dropping to 76.6 thou/cumm), my iron has increased since starting to take an iron supplement. Test Result Ref Range IRON 31 35-140 mcg/dL TOTAL IRON BINDING CAPACITY 270.2 245-400 mcg/dL IRON SAT 12 15-50 % Although my iron and % saturation were still below normal, they were slightly improved ( note the different reference ranges fro...

It's been two weeks since I started taking an iron supplement, and one question people have been asking is Do I notice any difference? Well that's a difficult question to answer. Even if I thought I felt better, I would be hesitant to say yes, because I find it hard to believe taking an iron supplement for only two weeks could really have any effect. Then there is the obvious potential for a placebo effect. I want to think the iron is helping, so I rationalize that I'm feeling better. So I have been answering "no". In reality though, I do [sort of] feel better. I've already put in 300 miles on the bike this month, and while I feel tired, I don't feel any more tired than I have been feeling, and I rode really strong this weekend. At least that's my perception. Plus, I think I've been sleeping better, not getting up as often during the night as before, but then again, that could all just be a placebo effect. Oh well, hopefully I'll learn more sho...