LIVING WITH MCL

And I am iron deficient, big time. [Which would account for my low hemoglobin] Test Result Ref Range IRON 30 59-158 mcg/dL TOTAL IRON BINDING CAPACITY 231 250-420 mcg/dL IRON SAT 13 20-50 % My Ferritin levels were good, but that could be because Ferritin is also an "acute phase reactant", that is sometimes increased with acute or chronic disease. Folate and B12 levels were also within the normal range. The only problem now is determining what is causing the iron deficiency, which in the case of men, is [very] rare. My oncologist has given me a Globin Fecal test to perform, and has scheduled me for a consultation with a colorectal surgeon to discuss performing a colonoscopy, which could be problematic because of my large spleen. In the mean time, I've decided to start taking an iron supplement, it's only the quantity that is causing me some consternation. I've been told by a very knowledgeable person that to overcome an iron deficiency, I need to be taking 300 mg o...

Went to see my VA oncologist on Wednesday. I'm still not completely comfortable with him just yet. He seems conscientious enough, and is willing to spend time talking with me, going over the various options available, but at times he's difficult to understand (he has a strong accent), and he is pretty young. Of course my Kaiser oncologist is young as well, so I can't really hold that against him. He's also convinced I have Splenic Marginal Zone lymphoma (SMZL), not MCL, but I did point out that with the t(11;14) translocation, SMZL is not a likely diagnosis. I'm not sure he was convinced though. In any case the treatments would not be much different, and he expressed a willingness to use Rituxan, as a single agent therapy initially, as the prospects for beginning some sort of treatment draw nearer, which is what I was hoping to hear. So I am adapting, and I do realize at my age change is difficult. Anyways, my counts were basically stable, including my hemoglobin an...

As Roseanne Roseannadanna would always say "It just goes to show ya...it's always something! If it's not one thing, it's another!" Well now that I'm feeling much better, I can get back to my normal routine of whining and complaining. After all that is what I do best. Plus it's windy and cold outside, and not conducive for a bike ride, so I've got plenty of time on my hands. Yesterday at work we had Sarbannes Oxley (SOX) training, for which I had to attend. I thought SOX was about financial accountability, so why in the world would manufacturing, quality and metallurgy need to be in attendance? Well as it turns out [at least how I interpret it], SOX is nothing more than AS9100 , but with accounting factored in, and we have to write a[nother] manual documenting everything we do from order taking, to production, to shipping, to invoicing etc. So I'm sitting there bored to death, thinking why in the world are we going through this, when it's bas...

The following doesn't need any commentary. It speaks for itself. (No pun intended) [note]Oh, and BTW, in case anyone's interested, I'm feeling minutely better today. I'm not sneezing or blowing my nose as much, but I am still doing both. And my headache is mostly gone. I'm hoping as the day goes on I'll feel even better.[/note]

Well I'm not feeling any better today, plus now in addition to the runny nose, I'm sneezing and I've developed an annoying head ache. And just when the weather is starting to improve. So with little else to do except feel sorry for myself, I decided to peruse some older posts to see if I recorded similar episodes in the past. I was surprised to learn I'm good at feeling sorry for myself, and writing about it. It turns out I was sick twice last year, once just about a year ago (the beginning of March), and then again in July , both with very similar symptoms. Fortunately I recovered both times. My only hope now is history doesn't repeat itself (except for the getting better part that is), and I don't get sick again in July or August. I was off the bike for 6 days last July, which I've pretty much just equaled today. Twice in one year could be too much to bare. As a good friend once told me , riding is what keeps him healthy, and he should know after two bout...

I'm not feeling good [haven't been for the past several days], and I blame it on golf, and the weatherman. I've hardly been playing any golf lately, and if I hadn't already committed to playing with the one golfing group I belong to, I wouldn't have played last Monday either. I would have also likely skipped out on the tournament had the weather forecast been just a little more accurate. You'd think weather.com could at least get the forecast right 4 hours in advance. But noooooo, that was not the case. The night before rain was predicted to start early in the morning, and extend till about 9 AM, and had that been accurate, I would not have gone. Instead, when I awoke that morning there was no rain, and the forecast changed to cloudy with only a 10% chance of rain until about noon, when the rain was to return. I figured by that time I would be done with the round, so I headed out to Corona for my monthly golf fix. When I arrived at the course, it was a little c...

I know I said I was done , but I can't help it. This morning, I received an email from someone I thought knew better. I couldn't have been more disappointed, especially when I wasn't feeling good to begin with. What the email was about isn't relevant in my opinion. Some of the facts may even have some validity [albeit exaggerated and old], but what is relevant is it seems too many Americans have become so brainwashed by special interests, they are blind to what is really occurring in this country. The special interests in this country are so adept at diverting the discussion away from the real issues confronting this country, to areas which admittedly attract strong emotions, but have little or no relevance to the problems facing this nation, and are only meant to inflame and polarize an already divided nation. If I can't expect the people I consider intelligent seeing through this facade, is there really any hope left that we might emerge a stronger and more unifie...

Yes, it's been 8 years [a year and 8 days to be exact] since my diagnosis with Mantle Cell Lymphoma (MCL), and I barely even realized it. Even to this day, it's hard for me to comprehend the fact I was diagnosed with a very aggressive lymphoma, with an average life expectancy of only 5 years. Of course one of the drawbacks with life expectancy predictions for a terminal illness, is there is almost no way of knowing how long the person had the disease before diagnosis. Was it one year, two years etc? It's difficult to know, especially with the health care system that exists in the US, where a large portion of the population is excluded from the health care system, and others can't or won't go to see a doctor, because of the cost, until it's too late. [OK, that was my political rant for the day.] Just how many other cases are there like mine? How many others are walking around with cancer, and don't know it?  If I hadn't gone for a physical exam that fatef...

At least today I gave the young kid who came to the door the opportunity to tell me he was with some "jobs program" before telling him I wasn't feeling well and didn't have the time. Plus I even managed a good deed yesterday, when I noticed the clerk at the Japanese supermarket, where I purchase my green tea, only charged my credit card $8.99. I knew that wasn't right, as I bought 4 bags of tea, and one of the bags of green teas alone (the Gyokura), I knew cost more than that. He was very appreciative, and I felt good about it as well. Who knows, maybe I'm not as jaded as I thought. It's just I believe in the golden rule, Do unto others, as you would have them do unto you and I would never go to someone's door at any time, nor call them on the phone, trying to sell them something. If you want to sell me something, send me an email. You've got a better chance that way than coming to my door, especially if my email filter doesn't catch it.

It doesn't happen all that often, but it does happen often enough, when someone comes to my door that I don't know, I assume they're trying to sell me something, and immediately turn them away. I try not to even listen to their opening salvo. I just say "not interested", and shut the door. Edie's not as jaded as me, as she will always "give someone the time of day", but not me. The other night some girl came to the door around 6 PM just as we were sitting down to dinner. The door was closed, so I was able to ignore it, and she went away. But about 2 hours later she returned. This time I answered the door with my usual cynical, pissed off attitude, stating we're having dinner, and I wasn't going to buy anything. She tried to tell me she wasn't trying to sell me anything (at least now that I think back I believe maybe she was trying to tell me that), and she asked if I were Eddie. Well, obviously I wasn't, so I said no, shut the door, a...

I just got the results of my latest blood work, and my hemoglobin was down to 10.8 g/dL. That's the lowest they've ever been. No wonder I got dropped on PCH [on the club bike ride] yesterday. At least all the other numbers were good. Creatinine at 1.0 mg/dL, lymphocytes still below 90 thou/mcL, and platelets, although dropping to 154 thou/mcL, are still above normal, and have been worse. My only hope is it's either a bad test, I was just overly hydrated from the pint of tea I had this morning or it's all the stress from last week causing havoc on my body. Unfortunately, now I'm going to be stressed out a month waiting for next months test. Maybe I should just start having my blood checked every other month, or every 3 months. I'm just afraid if I do that, I'll be stressed out even more wondering, or worse, my counts will take a dramatic turn for the worse.

The saga has finally ended. Sylvia made it to Florida to be interned with my mother and father, and Edie and I have made it back from a very stressful 42 hours of travel (22 hours of which were either in the air or waiting in airports), traveling between LA and Fort Lauderdale. I sure don't want to do that again. Up at 4:30 AM on Thursday, arriving Fort Lauderdale around 7 PM that evening, only getting about 3 hours of sleep Thursday night, and essentially awake for the next 24 hours before arriving back home at 11 PM on Friday. At least I slept good last night, and even managed to make the "hammer zone" [bike ride] this AM, although I will admit to missing the first part of the ride, having awoken just a little later than normal, but it felt so good. It sure does feel strange though, knowing Sylvia isn't around any more, or that we don't have to go visit her in the hospital anymore either. I guess that's something we'll just have to get used to.

Here's one that will go down in the annals of US health care history, and is one, if you know how much contempt I have for our current system, and despite my [unsuccessful] attempt to refrain from such posts , boggles even my mind. Edie [my wife] becoming eligible for Medicare (due to her disability) signed up for Kaiser Permanente's Senior Advantage Plan. It's a Medicare Advantage plan combining Medicare parts A, B and D, and usually referred to as Part C. She filled out the application at the end of February, and very recently received a letter in the mail indicating her enrollment in the Senior Advantage plan, along with a new card also showing she was enrolled. Great! Everything's fine, or so I thought. It's now time for her to reorder her Lyrica, so the pharmacy calls to let her know there will be an $835 charge [it's a very expensive drug], since she hasn't fulfilled the deductible part of her current plan, which is the plan she was on before she was e...

Well, the inevitable occurred last night at 8:48 PM Pacific Time. Sylvia passed away. It all started just before Thanksgiving, when I had to call the paramedics for what I thought was a stroke. Miraculously, she made what seemingly was a very quick recovery, and she was able to return home in just over a week. That unfortunately didn't last very long, and she spent the next 3½ months going back and forth between home, the nursing home, and the hospital, each time making what appeared to be a good recovery. Then a week ago on Monday, just after I had visited with her, and thought she was doing better (I even took her for a short walk earlier in the day), she again had to be rushed to the hospital that same evening, because she had difficulty breathing, and had become unresponsive. This time was different though, and she never really got any better. She was trying, even sitting up in a chair on Sunday, but I guess that was just too much for her frail body to endure any longer. It...

Still believe in the benefits of vitamins and supplements? Still have trouble grasping the idea that vitamins and supplements are a well devised scheme by the pharmaceutical and supplement industries to separate you from your hard earned money? Then maybe this article from Consumer Reports will finally convince you otherwise. Americans .............. spent an estimated $10 billion on them [vitamin and mineral pills] in 2008, according to the Nutrition Business Journal. But recent studies undertaken to assess their benefits have delivered a flurry of disappointing results. The supplements failed to prevent Alzheimer's disease , cancer, heart attacks , strokes , type 2 diabetes , and premature death. "We have yet to see well-conducted research that categorically supports the use of vitamin and mineral supplements," says Linda Van Horn, Ph.D., a professor of preventive medicine at Northwestern University's Feinberg School of Medicine in Chicago. "Most s...

Things have just not been going well lately. Sylvia's back in the hospital. She had trouble breathing Monday evening, and was unresponsive, so she was moved from the skilled nursing facility to the hospital. She then had to be put on a dopamine drip, as her blood pressure dropped to virtually zero during the night. So now we're just waiting, not knowing exactly what to do. I spent about an hour with her yesterday (I'm just not good in hospitals), but Edie spent most of the day with her, and will go back again today. There is definitely nothing harder than watching someone deteriorate so rapidly, and unable to do anything. Especially someone who still has their wits about them. On top of that, business is slowing down at work. The plant only worked Monday this week, and on only one order. Hardly worth the effort [and cost] to fire up the boiler. But worst of all, it's 41°F outside this morning. That's the coldest it's been in quite awhile, and just when I was get...

To make up for all my regrets (forgotten and not forgotten) we went to Osteria Mozza in LA for dinner last night with friends. We were celebrating our friends birthday, and as you might guess we had just a little too much to drink. But so what, you only go around once in life, so you might as well do it with gusto, and besides, we had a good reason this time. Suffice to say, dinner was good. We had a good time, and I would go back. We started off with a Proseco as a celebratory gesture, followed by a 2003 Domaine Serene, Mark Bradford Vineyard, Pinot Noir, and a Howell Mountain Cabernet with the main course (corkage is only $20 per bottle), and ended with a 13 year old Rip Van Winkle rye (whiskey), which surprisingly was better than expected. Oh, and the food was good as well. I could elaborate extensively, but I don't want to bore you too much. So I'll just touch on it briefly. We started off with a selection of mozzarella from the mozzarella bar, then had a little gnocchi an...

I've done a lot of things in my life, and been to a lot of places, and I really haven't had too many regrets. Sure I've made mistakes [lots of them], but for the most part they have all been forgotten. Except for one thing. Ok, maybe two. The one decision I've regretted the most, is not having gone to my 40th high school reunion four years ago. I had actually planned to go. I even made airline and hotel reservations in Pittsburgh, but at the last minute [for some unexplainable reason], I changed my mind, and instead went to Italy. Now in retrospect, that was just plain stupid. I wasn't impressed with Italy, and besides, Italy wasn't going anywhere. I could have gone there anytime, but a 40th high school reunion, that only comes around once in life, and it can't be repeated. That's why, regardless of how much I don't relish the idea of going to Ohio this summer, I know I can't let Edie miss her 40th high school reunion either. No sense both of us ...

You know it's hard being upbeat all the time, especially considering the state of the economy, and the continual partisan bickering by our elected representatives, further evidenced by today's health care summit [which I turned off after about 10 minutes], who seem to be more concerned with their own well being rather than the well being of the American public. But that not withstanding, at least the weather has cooperated enough to allow me to get over 500 miles in [on the bike] so far this month, I didn't get called in for jury duty this week, and my latest blood work continues to show stable disease, if not some slight improvement. My absolute lymphocyte count still continues on its downward trend [ever so slightly], and it looks like my platelets have finally stabilized, with the latest count coming in at 181 thou/cumm. Hemoglobin has also remained stable at 11.8 g/dl. Not great, but all things considering it could be a lot worse. So as long as I can continue to avoid t...

I'm not sure why I get so much joy looking at old photos. Well, that's not exactly true. I do know why. It's because it reminds me of a much more care free time in my life. And here's just a few examples. These first two were taken in the mid 70's, shortly after Edie and I were married, during a more ambitious time of my life. I'm putting on a new front porch at our first house in Newton Falls, Ohio. (Actually it was Edie's home that she inherited from her parents.) In the background, on the left,  you'll also notice two of our 5 cats we had at the time. They both helped me out a lot. Trust me when I tell you I'm not as enthused about performing this project as I may appear. You won't catch me doing anything like that again. This next one is of Edie and me during our boating days on Lake Berlin, near Newton Falls. This was also taken in the mid 70's, when I was a lot dorkier looking, and I had a lot more hair. [Actually we both did]. They say...