LIVING WITH MCL

As Edie begins preparing for an autologous stem cell transplant (ASCT), and since I have mostly recovered from my recent back injury (I swam 300 meters, ran 2.5 miles, and raced my bike yesterday), for the next couple of months this blog won't be so much about me, but instead will focus on chronicling Edie's journey. And so far it has been a rapid and event filled journey. Maybe even too fast [for me]. I never realized how much preparation goes in to having a transplant. Last week there was extra blood work, a 24 hr urine collection, skeletel scan and EKG. This week she's had a MUGA scan, pulmonary function test, and had blood drawn to check blood gases (a very painful experience she tells me), and today she has a stress test scheduled. Next week there's a consultation for the insertion of a Hickman Line , and if all goes as planned, the installation of that Hickman Line the following week. After that it's all down hill. Chemotherapy, stem cell collection, and t...

Now I have pulled a muscle or two in my lower back before, which has resulted in a great deal of pain, often coupled with an inability to even move, but at least in those cases, when I curl up in the fetal position, and don't move, the pain goes away. But around 2 AM last night, I awoke with such extreme pain in my upper back, there was nothing I could do to alleviate it. The pain was so extreme, I couldn't even lift my head, and for quite awhile I actually felt nauseous. Eventually I was able to stretch it out, enabling me to move, albeit very gingerly, but the pain was still there. At that point, I was desperate, and did something I have vowed never to do, or at least only do in extreme situations. I took a SOMA . So what caused this pain? I'm not exactly sure, because I don't remember feeling any pain at the time, but I suspect it was when I was putting the sub woofer into the new entertainment center we had delivered yesterday. That sucker is heavy and awkward to li...

Just got my latest blood work today, and I don't know whether to be happy or concerned. My lymphocytes dropped from 120 thou/cumm to 93 thou/cumm, which is good, but my hemoglobin dropped to 11.6 g/dl, my platelets dropped to 185 thou/mcl and my LDH was up to 160 IU/L, which are all bad trends. (No mention of polychromasia .) Now while my hemoglobin and platelets have been down at those levels before, this is the highest my LDH has been since it was at 153 IU/L back in January. [BIG SIGH] I just hate this! The prospect of starting treatment any time soon weighs so heavily on my mind now, especially since Edie has decided she wants to try and go for the transplant again , I can't seem to think rationally any more. I'm hoping racing at Eldorado tonight will clear my mind.

As if having mantle cell lymphoma, and everything that goes along with it, wasn't bad enough, and as if coming to the realization the body doesn't always respond the way the mind expects, still isn't enough, what you soon discover as you age, is the body has a seemingly endless array of ailments it's waiting to inflict upon you. About a year ago, I noticed some strange lumps in the palm of my hand. Since I do a lot of bike riding, and they weren't at all painful or bothersome, I assumed they were just callouses as a result of the pressure I exert on the handlebars when I ride. But then about 6 months ago I realized I couldn't extend the pinky finger on my left hand completely, I had a small lump (like an enlarged lymphnode) on the side of the finger, and the finger was looking slightly distorted and swollen. Then about two weeks ago, I realized I couldn't fully extend the ring finger on my left hand as well. At this point, I was getting a little concerned, s...

We made it through our AS9100 audit at work, much easier than I had expected. This has always been the most stressful time of the year for me , so it shouldn't take much imagination to understand how relieved I am the audit is over, and I can finally get back to my normal routine. Anywaze, Edie came across some pictures of us when we lived in Ohio, which was over 30 years ago. I got a big kick out of looking at them, and they helped to relieve some of the tension of the past week, so I thought I'd share a few of them with the rest of the world. It's hard to imagine we were ever that young.

I can tell, not because it's August, but because it's 6 AM, and it's barely light outside. I can remember not too long ago, easily getting up at 5:30 AM, because it was already bright outside, and the sun was shining.  Lately though, I'm barely able to drag myself out of bed at 6 AM, and I don't like it. And oh the humidity ....... Plus things aren't getting any better. After autumn, comes winter, and I really hate the winter. [BIG SIGH] If only we could find a way to slow down the passage of time.

It's one thing trying to squeeze a week, or even two weeks worth of work, into a couple of hours during the day, but it's another story trying to squeeze six months of work into two days. Let me explain. As part of my job as the Director of Quality/Metallurgy for the company I work for, and the part I hate the most, simply because it is something I have no training in, and little experience with, I am responsible for the companies adherence to certain quality standards, principally AS9100. And every year about this time we are due for our annual audit, by an outside registrar who we pay dearly for the privilege. We do this, because virtually all our customers require we maintain our AS9100 registration, as a condition for doing business with them, and as an indication of our commitment to producing a quality, cost effective product. For the most part, it's not that difficult to comply with all the requirements, but there are a lot of, what in mixed company I like to call no...

Growing up when the original Star Trek series, starring William Shatner and Leonard Nimoy, was being aired, and never having missed an episode, I can't help feeling some remorse, learning the ashes of Montgomery " Scotty " Scott were lost in the failed launch of the Space X rocket Saturday. And if that wasn't bad enough, the ashes of famed astronaut Gordon Cooper and 206 other individuals were also lost. And just when I was thinking, things couldn't get any worse.

Ever since riding Glendora Mountain Road two weeks ago, my energy seems to be sapped, and I don't feel much like riding. Top that off with a 3 day vacation, which drained even more energy out of me, and it was like I was just going through the motions on this mornings ride. I think it was mostly the vacation that did me in this time though.  We spent Sunday through Wednesday in the Santa Ynez Valley, drinking lots of wine, and eating lots of really rich food. It was truly decadent. Can you believe I gained 5 pounds in 3 days?  Thank goodness we only went for 3 days! Then after driving home on Wednesday, hoping to rest for the drive to work the following day, I remembered we had committed to a wine dinner that night, with even more wine and rich food.  At that point work was starting to look appealing. Hopefullly today will give me some time to recuperate.  We are having a new entertainment center delivered, and that will take a little effort setting up, but other than that, I don...