LIVING WITH MCL

Ok, so it was only just over $900 worth of wine (that just didn't sound as dramatic). Still that's a lot of wine! Even if some of them are a little on the pricey side. And that's on top of spending close to $800 for groceries this month, which believe it or not has been about average for us so far this year. Is it even possible for two people to eat $700+ worth of food in a month? No wonder there's no room in the refrigerator [or freezer], and I never seem to be able to find what I'm looking for. (I just found a bag of flour tortillas this morning with a January 19th sell by date.) So is that what happens when you stop working? You spend too much time shopping, and you lose all track of money as well as time. [Or is this what inflation looks like?] I'm not going to make my 20 year plan if I keep this pace up. Of course maybe I won't have to. :) [note]On a positive note, we have managed to reduce our gasoline expenses by about $50 a month. I likely would have...

I wish I could write those catchy little articles that inspire others to do things, or that just make you laugh like so many others I come in contact with, but alas that just isn't me. Heck I have enough trouble reading the catchy little articles of others, let alone write them. Anywaze, it looks like the sun has come out for now, giving us a short respite from the pretty intense storm we had yesterday and this morning. The bad news is, it's supposed to start all over again on Wednesday, so I'd better start enjoying it while I can. Fortunately no longer having to go into work does give me a leg up in that respect. I'm now on my 4th oncologist, in just over 6 years. Oncologists/Hematologists, at the VA, are all Fellows (except for the one attending physician who fortunately doesn't change), only obligated for 3 year stints [or less as I recently discovered], so I am used to change. I just wasn't expecting it so soon, as my most recent doctor decided he couldn...

Reading is something that occupies the time of many people who aren't working. I know because I have two friends, who are retired, that do a lot of reading. Unfortunately though, I'm not one of those persons. It's not that I don't read at all. I actually have read a couple of books I enjoyed, including " The Hunt for Red October ", and " The Good Soldiers ". I even read Alan Greenspan's book " The Age of Turbulence ". It's just they took me more than a day or even a week to read. Considerably more! And lately, I just can't seem to get through anything. I recently bought the biography of Theodore Roosevelt " Theodore Rex ", thinking I might enjoy that, but it's been over two months now, and I'm barely 10% of the way through it. Every time I sit down to read, I start getting drowsy. About all I have been able to read are short magazine and newspaper articles, but I even end up having to skim them some of the time...

Every now and then I actually post something pertinent to my disease, and while I'm not really posting anything here, I am directing you to another website , which I consider of invaluable importance for anyone suffering with leukemia or lymphoma. Rituxan is one of those drugs that has definitely proven its worth over time. Used in combination with other chemo drugs [and often times alone], it has increased the period of progression free survival (PFS), and the overall survival (OS) for those suffering from leukemia or lymphoma. But despite being a wonder drug, and not really considered chemotherapy per se, that doesn't mean it isn't without its side effects and complications. Nor does it mean it won't [still] be my drug of choice (initially as a single agent therapy), when the time comes to start treatment, even after reading this article . So if you're one of those people with leukemia or lymphoma, this is definitely a must read , as you either have or will be tak...

I came across this interesting article in this months San Francisco magazine . It's about Steve Kirsch , a Silicon Valley entrepreneur, who founded several companies, including Infoseek, and his committed efforts, in time and money, to finding a cure for Waldenström’s Macroglobulinemia , a disease he was diagnosed with in July of 2007. The article also mentions several other high profile entrepreneurs, who have made similar commitments after being diagnosed with deadly diseases, including Steve Case (AOL), Sergey Brin (Google) and Larry Ellison (Oracle). Now while I admire these individuals for what they have accomplished in their lives, and their efforts to fight their disease, for me it raises much larger questions. Why does it take a disaster or the diagnosis of a deadly disease to make people spring into action? And why are the efforts of these individuals only directed towards their particular diseases? In my opinion, it just isn't enough these individuals are trying to d...

It was 37°F this morning! Too cold to do much of anything except stay in bed, which I did until 6:30 AM. I've noticed I've been finding it more difficult to find things to write about lately. Not sure the exact reason, but I suspect the fact I have little if anything to do, results in me doing even less. One thing I know for sure is, I do need to solve this problem soon. I've been trying to read more, but the only thing that seems good for is falling asleep. :) (I've never been much of a reader, even when I was in school. I've been fortunate most things just seem to come intuitively to me.) I have been spending more time on the lymphoma and myeloma message boards, reading about all the trials and tribulations of others in similar situations. That can be pretty disheartening at times, but at least it provides some comfort in knowing Edie and I aren't in as bad of shape as many others. Still you can only do so much of that before it becomes overwhelming. Oh well, ...

This all began at the beginning of the month when I decided I could no longer continue working because of my MCL. It was little things at first, but lately the problems seem to be mounting. Even when I thought I had one problem solved, it really wasn't. But it really got started about a week ago, when I broke one of my good wine glasses putting it into the dishwasher to drip dry [in retrospect I shouldn't have done that, since it really didn't fit], after which I broke one of my jars of green tea, as I was taking it out of the refrigerator, spilling nearly 100 grams (enough for 50 cups) of gyokura (the expensive stuff) on the floor. Then on top of that, yesterday I discovered Verizon screwed up my cell phone charges, all having to do with the number change I posted about 10 days ago , and I don't know if I'm going to be able to easily [or inexpensively] rectify it to my satisfaction. It's enough to make a grown man cry! [help]BTW, anyone know anyone at Verizon t...

Like I said in my previous post, this no longer working thing is proving more difficult than I had anticipated. It's the quiet, and the lack of a need for urgency that seems to be the most difficult getting used to. No more emails or calls from Becky, Pat, Bud or vendors asking for my expertise. Heck they don't even call or email me just to say hello. It's just dead, and I'm left to my own devices to figure out how to spend my time. One thing I've come to realize is I'm spending way too much time in front of the TV and computer, so today I decided to try and avoid those two things as much as possible. And so far I think I'm doing OK. It's just past 5 PM, and I've managed to avoid the TV completely today. I haven't been quite as successful avoiding the computer, but I'm working on it. After all, I still have bills to pay, and I have to keep up with my blog of course. Plus my phone comes in quite handy for doing a number of things I used to do ...

So far this not working thing is proving more difficult to get used to than I anticipated. It's not like I'm bored, as there are lots of exciting things to do, like reading, watching the plants grow in the back yard, or better yet following the news on the internet and TV as chaos and lunacy slowly permeates throughout the world and especially the US. It's that I feel there's something missing. After working for the same company, through all its turmoil, and essentially the same people for over 20 years, now there's a void I am finding difficult to fill. At one time, we were a happy [and sometimes dysfunctional] family. (That of course all changed when Precision Castparts Inc took us over in Oct '09.) Now, no one calls any more to ask for my advice. Even Becky, who I was the closest to, has seemingly forgotten me already. It's like losing a family member, or maybe in this case, getting a divorce. Yeah, I know, eventually I'll get over it. I just wish so...

I'm starting to feel a lot better about my decision. Yesterday, I managed to retrieve my company telephone number for my own use. It wasn't easy [or cheap], Verizon customer service sucks, but it is done, and then this afternoon I sold the Camry. I definitely got my moneys worth out of the Camry (248,000 no hassle miles), and even if I had given it away, I still would have been way ahead of the game, but I got $1,200 for it‚ and that's with a cracked windshield and a passenger side door that only opens from the inside. (Those were the only things wrong with it.) And best of all, I don't have to worry about getting a parking ticket in front of the house anymore, because I forgot to move the car on street cleaning day. Now the only obstacle left is getting Social Security disability approved, which is proving to be a little more daunting then I expected. There seems to be a few more documents to fill out then there were 2 years ago when Edie filled out her application. [n...

Well today I decided to announce to my realm of aerospace that I would no longer be performing my duties as the Director of Quality and Metallurgy at Arcturus Manufacturing. It wasn't exactly how I planned it, but when the controller at my company called asking about my application for state disability, it just sort of mushroomed into that. This isn't something I decided on the spur of the moment though. I had been contemplating this for several months, but now that it's done I'm starting to have some doubts. Arcturus has been a part of my life for over 25 years, and now it's all over? Even one of the guys in the shop called, indicating how great it was working with me, and telling me how much he had learned from me. I'm sure it was just platitudes, but now that I've made my intentions clear, and I assume everyone else at the company now knows it, the reality of it is starting to settle in. It's just so hard to imagine. It all seems so final. I did want ...

As I posted a couple of days ago , Edie's latest treatment protocol (Velcade + Decadron) seems to be working. Maybe even better than previously thought. Not only has Edie's kidney function improve significantly, but her Freelight Chains have dropped dramatically, from 2600 a week ago to 62 now. That's still not in the normal range (<19), and her back is still hurting some, but it's a good indication. Even the neuropathy doesn't seemed to have gotten any worse. Of course neuropathy is still a concern, so the decision now is what to do next? Do another 21 day cycle which includes 4 more infustions, or do maintenance Velcade at a frequency as yet to be determined? Unfortunately there's no cookbook for this kind of thing. Everyone is different, and we all can react differently to the same drug(s), so a trial and error approach may be the best path. [tip]Wouldn't life be so much simpler if we were all the same, [and thought alike]![/tip] In any event, Edie has...

Just got the results of my latest blood work, and the numbers are nearly identical to last months results, and the month before that, and the month before that, and on and on.... Except for my spleen becoming more bothersome ,  nothing has really changed in the past 2 years. My hemoglobin is still hovering around 12 g/dL, platelets at 160-170 thou/mcL, and lymphocytes range from 85-95 thou/mcL. The only thing that seemingly varies significantly, from month to month, are the neutrophils (ranging from 2-6 thou/mcL), but when you consider all the lymphocytes crowding everything else out, the accuracy of that count is brought into question. You'd think I'd be elated, right? NOT! And that's despite the fact my beloved Steelers defeated the Jets Sunday night in the AFC Championship (football) game, and it looks like summer has finally arrived (only 7 months late) in southern California. Maybe it's just natures way of telling me to slow down (I am 9 years older than when I was...

Well, here it is a little after 6 AM Sunday morning, and I've decided not to ride. Seems I'm having an issue, only a cyclist would know about. It's not serious, but I've decided to rest anyways. Besides I have to get mentally prepared for the Jets-Steelers game this afternoon! So I was going through my Facebook page, and I came across this photo, that a buddy posted, of the first group picture of Lightning Velo, the bike club we started back in 1987/88. That's me top row, far left. WOW! We looked so young back then. :) What's amazing is, I actually remember all the names, and most of them are still around. They're just not all in the club any more (including myself), but I do still run into a few on the road occasionally. Those kind of things sure bring back some good [and old] memories. Wouldn't it be nice if we could bring back those care free days, when life seemed so much simpler?

It seems the second go around of Velcade plus Decadron is doing its job on Edie's myeloma. After just two treatments, her blood counts are improving, as is her kidney function. So all would seem well again. Unfortunately that is never the case. As I've learned many times in the past, there always has to be some bad that goes along with the good. If you remember from her first go around , it was the Velcade that caused Edie's peripheral neuropathy (PN), and now it seems see she is experiencing some additional PN, above and beyond what she already has been experiencing. Plus last night, after her 3rd round of treatment, was a particularly trying one. She woke up around 12 AM with the shakes, and was not feeling so well. So she took a Lorazepam, and went down stairs to see if she could sleep on the recliner. A few hours later, when I went down stairs to see how she was doing, she seemed to be feeling a lot better. The only problem now is she can't seem to stay awake for mo...

For the past couple of months I seem to be getting more and more fatigued (I know my cycling abilities have sure been lacking), and my spleen has been becoming more bothersome, especially during my long commute to work. It may just be this time of year (which I have never liked), along with the below normal temperatures and above average rain fall making me feel this way, but whatever the case, things are starting to get to me. Seeing how I was feeling during my last appointment, my oncologist put me on permanent disability. Initially I thought that is what I wanted. No more making that long commute 2 days a week, and no more having to deal with working for a publicly traded company, with all the little idiosyncrasies I never had to deal with before. But the more I thought about it, the more hesitant I became. There are benefits to working, if for no other reason than it breaks up the monotony of the everyday routine. Then there is the health insurance question.  I've grown comfort...

Are you as perturbed about junk mail as me? It seems that's all I get any more in the mail. I would even include it as another one of those pet peeves of mine. I especially hate it when my credit card companies sends me checks to use instead of my credit card, which I have to waste time shredding. And what's the point of that anyways? The reason I have a credit card is so I don't have to use checks. Well, if you are as aggravated as me about junk mail, then have I got a plan. It's actually not my plan. I got it from a friend, but that doesn't make it any less of a good idea. Now, whenever I get an offer for something in the mail, instead of throwing it directly in the trash, I take any documents which don't contain my name, and return them to that company in the prepaid envelope. [note]Obviously this won't work if there's not a prepaid envelope included. I'm not about to waste any money doing this, but it seems quite a bit of junk mail does include a...

Well, it may not have been the hardest thing I've every done, but today's annual New Years day ride certainly proved worthy of note. I made it out of the parking lot, and another 6 or so miles down the road just fine, but shortly after that, things became a little daunting as the pace picked up, and not being well positioned in the pack, I was quickly dropped. I managed to pick up a few other stragglers along the way, and eventually made it to Corona Del Mar where I met up with some other buddies for the long slug home. It seems the eight days of rain, and bitterly cold temperatures during the month of December may have finally taken its toll. (I barely managed 400 miles this month, and a lot of those miles were junk miles.) I seem to have lost all semblance of fitness. I guess I could blame it on learning yesterday a fraternity brother died suddenly on November 22nd (he was the same age as me) for feeling so lousy today. I could also attribute it to the cold and all the extra ...

It's not bad enough Edie was diagnosed with multiple myeloma 5 years after my diagnosis with lymphoma, has already undergone radiation treatment [twice], several different chemotherapy iterations, and a stem cell transplant (while I have had no treatments or major symptoms), today she's going for here 2 nd blood transfusion in just 3 weeks. She had to go for the first transfusion about 3 weeks ago, after taking a round of Melphalan , which did a job on her immune system, dropping her hemoglobin and platelets to [I assume] dangerously low levels. (Why else would the doctor order a transfusion?) Her counts did initially recover after the first transfusion, but unfortunately the results of her latest blood test (yesterday) indicated a drop in hemoglobin back down to 7.5 g/dL, the same level they were just before the first transfusion. Her platelets managed to increase from 27 thou/mcL to 55 thou/mcL, but that's not much consolation, as that is still pretty freakin' low, a...

It's a beautiful day outside. The sun is shining, and the temperature is right around 50°F. It's a perfect day for a bike ride, if only the roads were somewhat dry. But just like last Thursday, the roads are soaking wet from last nights rain, and I refuse to subject myself to those conditions. So here I sit, bored to death (so wanting to be out on the bike) composing one of my meaningless posts, this time about Facebook. I don't get the fascination with Facebook. Sure it's a great way to stay in contact with old friends from high school and elsewhere, who may be light years away, but what else is it good for? And what's this new craze of friends pointing out where they are at every given moment in their life? Who cares when someone checks in at the grocery store? Anyways, yesterday we went to my niece's house in Granada Hills for Christmas dinner, and for whatever reason we were discussing the "places" app on Facebook, and I ended up "checking in ...