LIVING WITH MCL

Sorry for being so political lately, but I actually believed Republicans would do the right thing today, and vote in favor of much needed legislation, providing liquidity to the US financial system, and helping home owners, who got caught up in the American dream of home ownership. But will wonders never cease, the Republicans today (and admittedly some Democrats as well) reaffirmed my belief the Republican philosophy of I've got mine, who cares about anyone else, still reigns true, by helping to defeat the proposed legislation. And to think I almost believed John McCain, when he said he would change the way Congress works, and would reach across the isle to work with Democrats in a bipartisan fashion. But after hearing John McCain's speech today, I now realize his calls for reaching across the isle, were simply to make it easier for him to stick a knife in the back of Democrats, when they weren't watching. Hopefully the American public will wake up in the next 36 days, and...

As if the economy isn't in trouble enough, now my bank, Washington Mutual (WAMU), has failed. Ok, it actually didn't fail, but it might as well have. Being bought out by JP Morgan for chump change ($1.9 billion), isn't much consolation. I've been with them over 20 years, ever since they were Great Western Savings. I even owned some of their stock (purchased recently at depressed levels). Yes I knew there were problems at WAMU, but chose to put them out of my mind. After all, that's my bank! The wife of one of my cycling buddies is even high up somewhere in the organization, so I thought the risk was low. I thought they were "too big to fail". So much for my judgement. But the little bit of money I've lost, pales in comparison to what comes next. What's to become of my branch office located only about a half mile from my house? And more importantly, what will happen to all the people in the bank I have become accustomed to seeing and talking to duri...

Edie has completed the stem cell gathering process in only 2 days. Actually, there were enough stem cells collected the first day, but that wasn't known until after she arrived this morning for her second day of collection, so they decided to gather a few more stem cells for good measure (enough for a second transplant if necessary). There's no stopping the process now, so for the next 2+ weeks things can get back to some semblence of normalcy, as we wait for October 10th, when Edie will be admitted to the City of Hope, to begin the transplant. We even managed to have a couple glasses of wine with dinner tonight.

Tuesday , I was worried about the election and the economy. Well now that the government has come out with a bail out plan to save Wall Street the economy, that's one less thing to be concerned about. Now my biggest concern is Edie's upcoming transplant . I had mostly put that out of mind the last couple of days, but I was reminded of it last night, when Edie indicated she can't have any more wine, at least until after enough stem cells have been collected. That process begins Monday 9/22, and could take anywhere from one day, to several, or even more days. As if the ritual Edie goes through every night of cleaning her Hickman Line, loading up a syringe with 900 CC's of Neupogen, and then injecting herself with it, wasn't enough, now we have to fore go our nightly glass of wine with dinner. I know I'd sure be having lots of problems if I were on the other end of that needle. I'm having enough trouble just watching Edie go through it herself. Heck, it almost...

Here it is 1:30 AM Tuesday morning, and for the second night in a row, I can't sleep. There are just so many things going on in my mind, the stock market crashing, and likely to go down significantly more, the Democrats and Obama are about to squander another opportunity to elect a president, and set this country on a different track, and then of course Edie's upcoming transplant . It's like I have the weight of the world on my shoulders, and there's nothing I can do about it. In the midst of all the chaos going on in the US right now, a financial system on the verge of collapse, unemployment in excess of 6%, inflation (despite what government statistics might indicate) running rampant, it seems the American public is inclined to elect a third straight Republican, who wants to continue the economic policies of the past 8 years, and actually believes the US economy is still strong. Talk about elitism, and being out of touch with middle America. We're about to elect a...

Got to the hospital around 6:30 AM, and Edie was taken upstairs to the surgery area shortly there after. I sat patiently in the waiting area for about an hour, when someone called me in. WOW! This was great I thought. The procedure must be over already. I soon learned that was not to be the case. They hadn't even started yet, and she wasn't schedule for the insertion of the Hickman Line for another hour at 8:30 AM (2 hours after arriving at the hospital). Oh well, what can you do? I should have expected it anyways. At least it gave time for the surgeon and anesthesiologist to come in, and explain the procedure to Edie and me. According to the doctors, the procedure would take about 15 minutes, followed by 45 minutes to an hour in the recovery room, and another 30 minutes or so in the post recovery area. Well, as I soon discovered, I either misunderstood the doctors, or they were describing a best case scenario, and this did not turn out to be a best case. It seems Edie had a re...

Edie made it through her Cytoxan infusion today with little or no problem. It was a long day though, starting at 8 AM and ending a little after 4. So now it's on to the insertion of the Hickman Line. For that we have to be at the City of Hope at 6:30 AM tomorrow, and I have to take her. Since she needs to be sedated for the insertion, they won't let her drive herself home after wards. The insertion should only take about 15 minute, so with a couple of hours in recovery, we should be home by noon. I just hope they have Wi-Fi access in the hospital, so at least I'll be able to occupy myself while I'm waiting.

Tomorrow morning, 8 AM, Edie goes for her Cytoxan infusion. She only has one infusion of Cytoxan, but it's a doozy, lasting 6 hours. And the side effects , you should see the drugs she has to take to mitigate just some of them. Then Friday she goes for the insertion of the Hickman Line , after which she starts her Neupogen injections, which she has to give to herself, and then in less than a month the transplant begins. Jeez, a 6 hour infusion with the possibility of some unpleasant side effects, and then injections you have to administer yourself. I don't know what I'm going to do when my time comes. I'm not even sure I'll make it through the next two days, and I'm not the one being treated. I'll tell you, I am not a happy camper. There are just way too many things going on in my life right now, that I have absolutely no control over.

Only one test left, a bone marrow biopsy, plus the consultation for the insertion of the Hickman Line , both scheduled for tomorrow, and Edie will be on her way towards the completion of an autologous stem cell transplant, tentatively scheduled to begin October 10th. We've even received a schedule from the transplant coordinator at the City of Hope , and barring any surprises, Edie should be back home the beginning of November, as good as new. September 5 - Bone Marrow Biopsy and consult for the insertion of the Hickman Line September 11 - Chemotherapy (Cytoxan) begins September 12 - Insertion of Hickman Line, and start of Neupogen injections (used to stimulate the production of stem cells) September 22 - Stem cell collection starts, and continues until enough stem cells have been collected October 10 - Admitted to the City of Hope to begin transplant process November 1 - Return home [BIG SIGH] This is surely going to be the longest two months of my life.

I don't know what it is with me and vacations any more. This was supposed to be a last fling before Edie begins, in earnest, the preparation for her stem cell transplant. We would stay at the Wynn , see a couple of shows and have a few good meals. Unfortunately this vacation did not live up to expectations. Not even the Wynn, which I still consider the nicest hotel on the strip, and the only place I would stay in Vegas, fully lived up to expectations. Maybe it was the holiday weekend, but the service at the pool on Saturday, and the service at the Terrace Pointe Cafe, where we had lunch that same day, was less than stellar. It's like we were invisible to the people who were serving us. Certainly not what I would have expected from past experience at the Wynn. But even beyond that, Vegas has become just another tourist trap. Everything is WAY over priced and too congested. It was like we were navigating an obstacle course, dodging people as we walked down the street or in the c...

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...

You're diagnosed with a terminal illness, and given 3 to 6 months to live.  How do you respond? I'd like to think I've responded in a positive manner, and I've tried to inspire others into realizing exactly what they have, and how to get the most out of life, but I'm really not much of a writer, and I'm not even sure how good a job I've done achieving that goal. Fortunately there are those who seem to have been born with the ability to motivate and inspire. Randy Pausch , who died of pancreatic cancer on July 25, 2008, was such an individual, and before he died, he delivered this inspirational Last Lecture , " Really Achieving Your Childhood Dreams ", which to date has been seen by over 6 million people around the world. It's a little long (1 hour 16 minutes), but in my opinion well worth watching. ...we don't beat the Reaper by living longer. We beat the Reaper by living well