LIVING WITH MCL

No more 80 hits in a day to gloat over. It's back to my lowly 30 or so hits per day, so I thought I'd just take the time to update a few items I posted on over the last few days. Edie had to stop the Pomalyst [for now]. Her white counts took a precipitous drop to dangerously low levels. I guess the Pomalyst is working too good. She's had 3 neupogen shots since then, and her white counts have rebounded to a respectable 2.3. That's still well below normal, but it's considerably better than where they were earlier in the week. Waiting for her next blood draw tomorrow [Monday] to decide how to proceed. I said before, this drug is very new, so there's going to be a learning curve. Just not sure Edie [or I] appreciates her being the one used as the guinea pig. Oh well, someone has to be! As for me, my MCL remains stable [no change in blood counts], but I'm still experiencing more and more fatigue , which I can't explain but am convinced is caused by the Lipito...

I knew there was a good reason I've been feeling so run down (fatigued) lately. The truth is I've been run down ever since my diagnosis with MCL, which can mostly be attributed to a <12 g/dL hemoglobin, but lately I just seem more so. A large part of the perceived increase in fatigue could be due to the weather, which has been unbearably hot as of late (my electric bill is going to be so high this month), plus I am getting older everyday, but in light of this  report linking statin use and fatigue , I can't help but think there is a lot more to it. As if relenting to having to take a statin for the rest of my life wasn't bad enough, now I have to deal with this information. Maybe I could just do with a boost from some performance enhancing drugs. (See "In defense of Lance Armstrong" to the right!)

I seem to be going through another one of my funks about now. Something I find myself doing a lot more of lately. I just shouldn't be though. I should be happy. At least that's what I told myself 10 years ago, when I was diagnosed with MCL. I told myself, if I could get 10 good years I would be a happy camper. Well, I got those 10 good years, but that hasn't made me happy. I want another 10 years. I'm just not sure I can get them, and even if I do, I'm not sure that will make me happy either. You see, 10 years is a long time. It doesn't seem that long when I look back, but it is. Sure I've managed to hold my MCL at bay for most of that time, but along the way something happened I hadn't planned on. I got older, and my MCL is no longer my only concern. Most recently it was  the Basal Cell Carcinoma that was removed from my forehead , and the  Bibasilar Atelectasis, and coronary calcifications, that showed up on a recent CT scan , both of which can at leas...

It seems based on recent discussions on the MCL message board, and a review of my first post on fatigue , I may have led some people to interpret I believe fatigue to be psychological. So let me set the record straight. FATIGUE IS NOT PSYCHOLOGICAL! There are many factors which can contribute to the feelings of fatigue, which are psychological, e.g. depression from having a terminal illness, but that doesn't mean fatigue isn't real. It is real. I know, because I experience fatigue every day. I just try not to wallow in such feelings, and rather attempt to do something about it. There is no doubt in my mind that as we get older our bodies don't respond as they did in the past. There is also no doubt that cancer patients, who have undergone chemo and/or a transplant, have had

Well, there may be a few out there who will revel in the knowledge I may have been struck with some bad karma, as the result of my recent post on fatigue , and my last 3 posts on the MCL message board, regarding fatigue, and the US health care system. I didn't really think the comments were inappropriate, my only intention being to try and get everyone to learn and think on their own, without relying so much on others, but yesterday, when I was driving to work, I hit a [BIG] rock (ironically near the Big Rock) on PCH, a few miles north of Zuma Beach (it was dark, and I had just come around a bend in the road), which I just learned today, resulted in a cracked transmission which will require a new or rebuilt replacement. My only consolation is it's an 11 year old car with 230,000 miles, and since I do have an extra car, I don't have to spend the money to fix it. Plus, when I bought the car, I said when the Camry dies, I'm going to retire. So does a broken transmission co...

I'm sure I pissed off a few people on the MCL message board today with my comments about fatigue, and I'll probably piss a few more people off with this latest post, but I can't help myself. I actually enjoy sparking controversy sometimes, it helps get the juices flowing, not to mention fatigue is one of my favorite topics, second only maybe to discussions on the US health care system, or lack there of. There seems to be constant discussion about fatigue on all the message boards, not just the MCL board, but it all boils down to lymphoma survivors claiming bouts of fatigue, after chemo, a transplant, or just from having lymphoma, without any logical explanation, e.g. low hemoglobin (around 10 g/dl), EBV , CFIDS , all which can be checked for. I have to admit I am of the opinion of most of the doctors, who have little sympathy for these patients, that fatigue in the absence of a low hemoglobin etc. is mostly psychological. Certainly there is the fatigue associated with recei...