Making another attempt on Mt. Blogger

I love to write, and I find myself taking much time every day composing and polishing bits of text. Often this is for work, but I also write emails to friends, longish documents related to my Catholic faith or to work at our church, and private journal postings for my own use. Back when I was recovering from cancer, I used to post some of my musings here at Standing Here Beside Myself somewhat regularly, but I fell out of the habit when I started working again. I made a couple of attempts at restarting the blog since then, but I guess it was not the time. Now as I approach retirement, I find that the urge to write is constant and growing. A couple of friends have noted that a lot of what I have been writing lately would make good blog fodder. So, I am going to make another attempt at restarting this blog. Here goes.

Blog Re-Initialization Complete in 3 - 2 - 1 ....

I started this blog on 10/2/2006, and continued to post to it through most of 2007. My last entry was on 11/24/2007, almost 5 years ago. Throughout that period, I had posted semi-regularly. This was easy to do, since I was on medical leave fighting off cancer. But there were issues with keeping my medical insurance (which I obviously still needed). So, early in 2007, I was able to start work part-time with a friend's company, specifically so that I could get that insurance coverage. Sadly, because of how limited my energy and stamina became, I could not devote much time to non-essentials, like blogging. My posts grew less frequent, and eventually stopped.

Today, I am in a somewhat better situation. I have been in remission for over 5 years. Even better, I have been able to drop off almost all of the medications that I had been taking during that entire time. Although these drugs had been necessary to my recovery, they also took a physical toll on me. Frankly, I am relieved to be off of them. I have also gotten a little better at conserving my energy so that I don't burn out as often as I used to. I do have to be careful, because it is easy for me to overdo it.

Because of the above changes, I feel like I can now afford to take time to blog at least a little bit. More importantly, there have been some recent events that have had a big emotional and practical impact on me and my family. I believe it will be helpful, at least to me, to blog about these different changes in our life. Also, the topics I hope to touch on may be of interest to my family and friends, at least for a while.

Let's see if I can turn a good intention into a good habit.

Thawed Out But Still Behind

Once you get behind, it certainly is hard to get caught up again. The power outage of two weeks ago took a big toll in almost every part of our life here, my writing included. As I described a few days later, we eventually got our power back and began to put everything back in place.

However, I was not really able to get back into my normal pace once power returned. I'm not complaining, though, since the reason was that I started a new part-time job, something that my family and I are very happy about.

I haven't worked since March 11, 2005 when I went on medical leave to deal with multiple myeloma. During the intervening months since then, my employer decided that they didn't need my position any more and terminated me in absentia. Their reasoning in that decision was quite faulty, in my opinion, but perhaps it's just as well. The company has continued to do poorly under that same management, and it doesn't look like it will survive long anyway.

Since I was terminated, I have been able to continue my family's healthcare coverage using a COBRA extension. This allowed us to get the same coverage by paying the insurance premiums ourselves. However, doing so is almost prohibitively expensive. Our coverage currently costs over $11oo/month. Worse, one can use a COBRA extension for only 18 months. One way or the other, I knew that I was working with a limited amount of time to find an alternate means to provide healthcare insurance.

My new employer made me a very generous offer that allows me to work at a reduced pace, yet maintain decent healthcare insurance. Moreover, the work itself will be quite interesting, and I should be able to make a useful contribution. Another bonus is that I'll be working with some old friends, whom I have collaborated with a number of times over the past 15 years or so.

I started this new position on January 22, 2007, and I have been quite busy ever since then. There has been the usual bit of administrivia, filling out a seemingly endless number of forms, all asking for slightly different variations of the same information. There has also been a fair amount of computer setup, trying to get my laptop properly configured to work both inside the corporate firewall, and through a VPN connection from home. And of course, I've been trying to learn more about the tasks at hand.

My first project involves my becoming very conversant with a scientific programming language called Interactive Data Language (IDL), which is a quasi-descendant of the venerable Fortran (a language I first used in 1968). My new employer has built up a large body of legacy IDL code that needs to be re-organized and cast into a more readily usable form. I've always said that I'm really a frustrated librarian, so I expect that I'll be able to do some good here.

I find blogging to be therapeutic, so I have really missed my regular writing times. I'll be trying to re-balance my schedule so that I can get back to those. I'm glad that I'm only working part-time. One of my frustrations these past few months is the realization at how much more 'inefficient' my life is now. Everything I do seems to take longer than it used to. Although I am in remission, I still have a large number of medically related tasks that take up significant parts of the day. Also, I need more sleep than I used to be able to get by with. Finally, I am just plain slower than I used to be. Every activity, from eating to walking down a hall, I now have to do at half the speed I used to be able to manage. On off days, I'm even slower than that. I guess I'm supposed to learn patience from this. So will everyone else, if they are waiting on me. My brain still seems to be working at close to normal speed most of the time, so I'm hoping that I can learn a style of working that makes better use of thinking and less of moving.

Hiding In Plain Sight

I have a vision problem. Unfortunately, it's not one that can be remedied with an optometric prescription, laser surgery or medication. The heart of the difficulty is that sometimes I don't see what is right in front of me.

It seems to happen in any number of purely domestic situations. For example, my wife Mary tells me that there is a certain food container in the refrigerator with something in it which I will like. I go stand in front of the refrigerator for long minutes, peering high and low, moving things around, but, alas, I don't see it. I call Mary. She walks up, opens the refrigerator, immediately puts her hand directly on the invisible item (without moving anything), picks it up, and hands it to me. The same thing happens with some regularity for clothes in my closet, almost any kitchen item smaller than a gallon milk jug, and most items in our office. It also happens with tools and materials in my workshop.

A couple of days ago, I had a somewhat more serious episode of this selective blindness that troubled me. Because of the cancer I am recovering from, I take a number of drugs and supplements. Naturally, these come in bottles of various sizes, which run out at different rates. We try to keep ahead of that by periodically checking the levels, and then calling in refills to the pharmacy. After we pick up those medicine containers at the pharmacy, we put them in a special place so that we will be ready to switch quickly when the current nearly-empty containers run out.

On the Friday before Christmas, I went through this level-checking drill and realized that one of the meds I take, which comes in liquid form, was going to run out before the weekend was over. I called in a refill as usual. Later in the afternoon, when I went to pick up this refill, the pharmacist told me that the insurance company had rejected the refill request because it was too soon by at least a week. In other words, according to them, I shouldn't have run out yet. I explained that, whatever the insurance company thought, I would be out of that particular medicine in one or two days.

The people at the University of Michigan Cancer & Geriatrics Center Pharmacy have become great friends, and they always go out of their way to help us. The person there who handles the phone and the insurance went right to work, and somehow bludgeoned the insurance company into accepting the claim. It took twenty minutes or so, but I was glad to wait for it. I thanked my pharmacy friends profusely, tooks the meds, and headed home.

Mary, who had not been involved in this particular refill request, put the new containers in the appropriate spot when I got home. A couple of days later, when I finally exhausted the current bottle, I went to get the next one. The refill bottle I had just picked up was there, but to my surprise I saw that there was also one more bottle. This was the one that the insurance company must have thought that I had. I swear that I looked in the refill spot before I called in the order. And it's not like it was one of a dozen identical little pill bottles, either. It was a relatively big container, roughly the size of a typical cough medicine bottle.

How could I have missed it? Why does this keep happening? How can I miss seeing items that are obviously right in front of me? Certainly it has to do with focus of attention, but what does that really mean here?

One could speculate that perhaps this selective vision has to do with how much one likes or desires the thing looked for. In other words, I would more readily see something I desire and less readily see something I did not desire. However, that doesn't really explain it. When I stand in front of the refrigerator, I am hungry and I desire food. In fact I desire the particular food I am looking for. Why cannot I see it? Similarly, I want to get dressed, so why can't I see the shirt I want hanging in front of me? I want to take the medicine because it is necessary for my health, so how could I possibly miss seeing it there on the shelf?

Upon reflection, I think this kind of vision error has to do with the degree of affinity or liking, not for the item looked for, but rather for the activity which the seeing is part of. I like food, for sure, but I dislike food preparation. It is almost as if, in my juvenile way, I'm still wanting someone to prepare all my meals for me. Mary in fact does the bulk of the food prep here and does a wonderful job of it without complaint. However, she does not and should not have to prepare absolutely everything I eat. I can manage at least a sandwich or bowl of soup without spousal assistance. The thing is, I don't like spending my time this way. I hate putting in more time preparing the food than it takes to eat it. My guess is that this dislike somehow negatively primes my visual recognition ability.

Mary, on the other hand, gets great satisfaction out of doing those very things I dislike so much. She has very little problem seeing things in the kitchen, the closet, or pretty much anywhere else in the house. Now that I think about it, our kids often suffered from the same kind of blindness while growing up, and likewise had to depend on her (e.g., "Mom, where are my shoes?" "You left them under the coffee table.")

However, Mary does have her vision problems, too. I realized this while helping her over the last number of weeks as she learns how to use Windows XP. She does not like computers, but she realizes that she has to be able to use them to some degree given the prevalence and usefulness of email, web browsing, etc. It turns out that Mary has this same kind of selective blindness when it comes to looking at the Windows desktop. I'll say something like "OK, see the little box to the right of the cursor?" or "Now click on the 'Move File' link in the left hand column", but those location descriptions are not useful for her. When Mary looks at the screen, she sees a confusing mass of text and icons. She does not see things that are right in front of her. Needless to say, this has been a continual source of difficulty for her in getting comfortable with Windows.

On the other hand, when I look at a computer screen, I take in the whole thing almost instantly, identifying all the points of interest without trying. I very rarely miss any important detail. In fact, at times I've been able to diagnose colleague's bugs or find typos in their prose with no more than a passing glance at a screen-full of text. You might say, "Ah, but perhaps it is just a matter of practice." Maybe, but I've always been that way with computers, all the way back to when I did my first programming in 1967 in a high school summer program. I took to computers like a bee to a field full of honeysuckle -- I needed no encouragement and no instruction. Obviously, I liked computers. I suspect that preference primed my visual recognition so that I always spotted salient details on a screen or printout very quickly.

So, perhaps one's ability to see things in a given context is modulated by how much one likes the activity that the seeing is part of. If so, what do you do when faced with an activity that you don't like to do, but that you have to do? The kind of seeing or blindness I've been talking about is an unconscious thing. Willpower will avail you little in fighting the unconscious. I'm not sure how I should approach my own issue in this regard. Now that I recognize this performance shortcoming in myself in certain domains, I can at least try to take it into account. For example, I suspect that slowing down will help. I am naturally inclined to hurry through activities I dislike, which aggravates the blindness problem. If I slow down so that I truly look, I'll bet I'll see more than I have been seeing. Also, "no man is an island" (Paul Simon notwithstanding), so I should also just accept the fact that my blind spots and Mary's blind spots are at least complementary.

Reflections On A Red Cross Donor Card

A few days ago, I was cleaning out my wallet, removing some of the detritus of the past year. It's almost embarrassing to see how much useless stuff that I have been carrying around. Anyway, among the items I found was my Red Cross Blood Donor ID card. I've been an RC donor since the early 70s. According to the RC records, in the 31 years or so that I have lived in Michigan I have donated 80 units of whole blood. I have always donated several times a year, and in recent years I have often hit the legal limit of five donations a year.

One of the reasons that I donated so regularly (besides the fact that it's just a good thing to do) was that I have an O Negative blood type. Only about 8% of the population is O Negative, but the really valuable thing about that type is that it makes me a 'universal donor'. That is, pretty much anyone needing blood could take my O Negative blood regardless of what their type was. Every time I donated, I would be reminded of my 'specialness'. Frequently, the RC would also send snail-mail reminders, which always mentioned the need for O Negative blood.

I really didn't mind donating at all. Unlike some of my fellow donors who became faint or dizzy after a donation, I never had any trouble at all. Instead, I always looked forward to the cookies and juice they provided in the 'recovery' area after a donation. Even more valuable to me was the fact that donating presented a good excuse to get out of the office.

This happy situation lasted until about two years ago, when I began having serious health problems. Around Thanksgiving 2004, I contracted a nasty cold/flu of some sort that I just couldn't shake. The RC rules are that if you have an active infection, you aren't supposed to donate. Unhappily, this infection lasted for many weeks, frustrating several scheduled attempts to go donate.

In a previous post, I warned that I might get tiresome talking about the following subject, so don't say I didn't tell you. Going into 2005, the cold/flu thing continued, but I also started developing other unpleasant symptoms. This prompted a number of rounds of doctor's visits to figure out what was happening. Finally, on March 10, 2005, I learned that I had contracted multiple myeloma, a serious bone marrow cancer. The day after I got the diagnosis, I started some heavy chemotherapy, which then continued for a number of months. Later I had a couple of bone marrow stem cell transplants. All of this high-intensity medical activity undoubtedly saved my life, but it also meant that I would never again be able to donate blood.

Rather, over the course of the months following the initial diagnosis, it turned out that I needed to receive a number of blood transfusions. Although I don't think I have received 80 units back, I know I have put a good dent in that number.

There were several reasons I needed the blood. At first, I was suffering anemia simply because my bone marrow was full of cancer cells instead of normal tissue, and so I was not producing enough red blood cells. At the time of my diagnosis, my bone marrow consisted of 70% cancer cells. It was no wonder that I felt tired and out of breath all the time.

As I mentioned, I went through a lot of chemotherapy, which killed a lot of the cancer cells. Then, in preparation for my first stem cell transplant in August 2005, I received a massive dose of a chemotherapy agent called melphelan. This drug killed even more of the remaining cancer cells. However, it also killed off most of the healthy cells in my bone marrow. (This was actually part of the plan for the transplant.) After that treatment, I then received an infusion of my own previously harvested bone marrow stem cells. From those cells, I regrew new bone marrow tissue. Naturally, that took some time, so I needed a few transfusions to bolster my red blood cell supply before my newly regenerated bone marrow could get back on the job.

Finally, in October 2005 I received a second stem cell transplant, using stem cells donated by my sister Bliss. This time there was no preliminary 'conditioning' or 'induction therapy' (kinder, gentler terms for chemotherapy). I simply received an infusion of her stem cells. Over the course of some days, those cells found their way into my bone marrow and set up shop.

It took many months, but eventually my sister's stem cells, which were healthy and vigorous, supplanted my own weakened cells. I don't remember exactly when it happened, but after a number of months the DNA tests the lab did on my blood showed that I was '100% donor cells'. Even more interesting, and perhaps amusing, was the wording in a July 7, 2006 cytogenetic analysis report:

The presence of a normal female karyotype in this sample is consistent with the engraftment of cells from a female donor following peripheral blood stem cell transplantation.

In other words, the transplant had been a complete success. My bone marrow was a clone of my sister's, and the blood cells it made were just like hers. It almost looks like a sex-change operation for blood cells. I like to joke that if I ever commit a crime, and leave some blood at the scene, the cops will be looking for a woman. (Someone else pointed out that this would make an interesting plot device for a CSI episode. But I digress.)

There was one niggling detail to spoil this medical success story. My sister was a perfect tissue match for me, as measured by the usual way that one does such matching. However, she had an A Positive blood type. I mentioned earlier that having O Negative blood made me a universal donor. Unfortunately, given the way blood type matching worked, that also meant that I could only receive O Negative blood. This more stringent matching requirement also included new blood cells generated in my own body.

So, while my new bone marrow was busily making new A Positive red blood cells, what was left of my old immune system was promptly killing them off because they were not O Negative. The left hand giveth, while the right hand taketh away, and all that. My new bone marrow was apparently producing plenty of new blood cells, but they never got a chance to do much good before they got wiped out. That meant that I had to keep getting O Negative blood transfusions.

This problem started right after the transplant in October 2005 and went on for a number of months. I received several treatments aimed at correcting the mismatch, but they took a long time to have an effect. Frankly, I was beginning to wonder if I was going to have a permanent problem with this internal blood type mis-match. The prospect of needing blood transfusions in perpetuum was not a happy one for me (or our insurer, I'd bet).

However, right around the end of May 2006, the old immune system finally gave up the ghost, and stopped killing off my new blood cells. When that happened, my hemoglobin level, which had been hovering in the 6-8 range for months, shot up to the 14-16 range, which is normal for an adult male.
(Perhaps you can't quite make out the numbers and dates on the axes of this graph, but hopefully you can see the sharp rise from late May to early July.) Needless to say, we were pleased. In fact, we were overjoyed. I haven't needed a transfusion since that rise. (The graph also shows a little bump around mid-October, but that's a different story.)

This brings me to the insight that flashed through my mind when I pulled out my RC donor card. Ever since the ABO blood typing system was first figured out by medical researchers, a person's blood type was thought to be immutable. Yet, now we know that under the right circumstances, it can change. What other characteristics of a person that we think of as fixed and unchanging are actually mutable, given the right conditions?

I have a friend, a very successful businessman, who fits the classic profile for a Republican supporter. He in fact was a Republican, as evidenced by his financial donations and his participation in party events. Yet, in the years since Bush's election, he has done a complete 180° politically. He now actively (and financially) supports various Democratic candidates, and debates his still-Republican pals in a friendly, but vigorous way. Knowing him as long as I have, I was rather surprised by the switch. Yet for him, the change was necessary, even unavoidable. He was repeatedly and increasingly distressed by the actions of the current Administration, as well as by numerous Republican misdeeds in his own state. As Popeye put it, "That's alls I can stands, 'cause I can't stands no more".

We have all been surprised by people we thought we knew well who did something completely unexpected. A confirmed bachelor finally gets married. A couple we thought had been happily married for decades gets a divorce. A well-known religious figure who had railed against immorality turns out to be a pedophile and porn addict. A hard-core atheist becomes a fervent believer and evangelist.

We may view some of these changes as unfortunate, or even tragic. Other changes, particularly those of a religious or ideological nature, are often viewed with suspicion. Those who disagree with a person's new views are likely to see him as a traitor or a 'flip-flopper'. However, it seems to me that the very notion of free will doesn't mean very much unless it allows the possibility of a person making this kind of deep, fundamental change. And you have to admit that resisting obviously needed change is just self-destructive: staying the course was definitely a bad idea for Captain Ahab.

In many things I am a conservative, in the older sense of being predisposed to limiting change. However, as I grow older, I am coming to appreciate the value, even the necessity, of allowing and accepting change in others, and especially in myself. After all, if I can change blood types, then who knows what other kinds of changes I have in my future?

VGPR

Back in March 2005, I was diagnosed as having multiple myeloma, a very nasty cancer of the bone marrow. My family and I had an especially strong reaction to this diagnosis because this was the same cancer that killed my father in 1985. Since my diagnosis, I have been through a lot of stuff, including four rounds of intensive chemotherapy and two bone marrow stem cell transplants. The second transplant used stem cells from my sister, and was ultimately successful. There were several significant complications, including a relapse around July of this year. But thanks to medical advances, a very effective round of additional chemotherapy, and the mercy of God, I have now reached a condition called Very Good Partial Remission (VGPR, in the trade). If I can maintain this state for three years, I can claim the Full Remission label.

My family and I are thrilled. Of course, being a stodgy, emotionally repressed white American male I find it uncomfortable doing a Snoopy-style happy dance, or anything like that. But don't let my lack of shouting and whooping it up fool you. This is the best news I've had in two years. I will probably become tiresome talking about it.

If you would like to read more about my Adventures in Cancer Land, you can peruse the WBC Remission Network site.

Update 11/4/2009: I had to take down the above named website, which had been implemented as a straightforward forum. It was getting hammered by hundreds of spammers trying to post their crap on my forum, and I got tired of dealing with the messages and alerts. I hope to convert my content from that site into a more conventional blog through Blogger/Blogspot soon.

It's About Time

I've been a long time coming, but I'll be a long time here.

People have been telling me that I should start a blog somewhere. As my friend Karen Fenton once put it "I'm having a moment of inertia." In my defense, I've been kind of sick for a while.

In March 2005 I was diagnosed with multiple myeloma, a very nasty bone marrow cancer. After extensive chemotherapy and two bone marrow stem cell transplants, I'm definitely doing better, but I'm not out of the woods yet. Recently, I have relapsed. (Although since the doctors never declared that I was in remission, I'm not sure telling me that I relapsed is all that informative.) Anyway, there is a protein called immunoglobulin gamma (IgG) which is indicative of how active my particular form of myeloma is. From January to June of 2006, the IgG level steadily fell. However, over the summer it started rising again, to the point that it got almost back up to the January level by mid-August. The doctors put me back on thalidomide, which is one of the drugs I was on for all four rounds of chemotherapy last year. It apparently is pretty effective against so-called 'refractory' myeloma, so we are hopeful that this will help. Unfortunately thalidomide has some pretty serious side effects. The most serious is probably peripheral neuropathy, which is the degeneration of nerves in the limbs, particularly in the hands and feet. The problem manifests itself first with a tingling, pins-and-needles sensation in the fingers. So far that hasn't happened, although I did experience that last year when I was on higher doses of thalidomide. The main problem I'm experiencing now is dizziness, nausea and general dopiness. The only upside of that so far is that thalidomide has cured my insomnia.

Regarding writing, I've been storing up a long list of topics about which I have something to say. At least I think I do. Having never actually written out my thoughts on these topics, it's hard to say how coherent they will be when finally put down as bytes in a database. We shall see.