I'm not really lazy... Really!

I know it's been a while since I made a post. I didn't realize how long until I checked the date of my last one. Needless to say, I was a little embarrassed at my procrastination. The past several months have been a series of highs and lows because of the chemo and other outside influences, which were highlighted by the Toshiba drive in my laptop losing its lubrication, and therefore spinning at a speed less than appropriate to access my data. In other words, it essentially died.

It took a while to get the problem narrowed down to the fact that I had to send it somewhere to do a proper disk recovery not available locally, and it was going to be EXPENSIVE. Prices went as high as $2500 or so. After I regained consciousness I contacted a company in Florida called ECO Data Recovery. You can find them at http://www.ecodatarecovery.com. These guys are professional and fast. They have their own clean room facilities, and were able to disassemble the drive, and then do whatever was necessary to save my data onto an external drive I sent them, and then send it back to me. In the end, they recovered 100% of my volatile files, so I didn't lose anything from the experience. Their price for me was much less than anyone else I talked to, and they were understanding and sympathetic to my issues. If this is sounding like a plug for them, well I guess it is. I'd use them again in a heartbeat.

I've crossed over the six month of my five day chemo treatment and I'm feeling fairly good. My last MRI was clear with no lingering signs of the tumor. This is a terrific bit of news for me. I'm not saying I've beaten it yet, but as long as things stay the way they are now, I have a good chance of getting back to normal.

One of the first things I need to do is get back into shape. I weigh about 10 lbs more than I did 10 months ago, and because of my inactivity, I've lost about half my muscle mass. This bothers me a lot, because my profile in the mirror has really suffered. Before all of this tumor stuff I was in good shape. I went to the gym regularly and I taught martial arts twice a week. Because of my loss of muscle, I'm considerably less strong as I used to be. I can still do some things reasonably well, but I tire faster.

I need to come up with a plan to lose the spare tire and get my muscle strength returning. I'm a little concerned about jumping into a regimen and blowing myself out in the process. I've done this plenty of times when I was healthy, so I don't want to especially do it now. My diet isn't bad, I just don't seem to be able to lose any weight, which won't happen until my activity level increases. I sort of have a plan, but if I had a better idea of how to proceed, it would keep me on track. My willpower seems to have suffered during the last 10 months, so getting back in the saddle is all the more difficult. If I could afford a trainer to work with me, that would be the best way, but since I can't, I'm going to have to depend on my own fortitude to get things back to some semblance of the way I was.

This isn't a New Years' resolution, but it should be.
I still have more to add, but right now I need to pull the Christmas lights off the house.
Stay tuned, I promise to be back soon.

Long hot Summer

Well, here we are in mid-August and I'm 30% through my new chemo regimen. So far it hasn't been too bad, but I find that the fatigue is still hanging in there. I just pace myself and the days seem to glide by. Work doesn't seem to be affected, but there are times when I get a little sleepy in the afternoon, but I'm more inclined to think it's because of lunch, rather than anything else.

I have another MRI coming up in a little more than a week, so things should come more into focus for the longer term with that. I can't help but be a little tentative though. Those scans tend to be milestones, and I feel a little a little anxious as it approaches. I've become somewhat hypersensitive to what's going on inside my body now. You tend to analyze every little ache, or twinge, or soreness, and relate it back... especially when it's in the head region. Some of it is just stress I suppose.

I stopped reading about this, because there is nothing good or encouraging written. Everything has this gloom and doom approach. I don't need that. I want to keep positive, and I can't do that when most that is written has a negative spin.

I'm busier now, and I'm trying (in my own way) to work at projects that have been hanging around. I'm even getting them done... although not at warp speed.

Tumor update

It's been three weeks since my chemo and radiation sessions ended, and I think I'm beginning to feel closer to my old self again. I still have a little way to go to be ready to do my old gym routine, but if there's anything I've learned in working out over ther years, it 's that no matter what you did in your lay off time, it'll take a bit to recover the old form. we'll see how this goes.

Yesterday I had my new baseline MRI, and had a chat with both doctors. The whole thing was as positive experience as I could hope for. It went very well and the doctors were encouraged. I saw the MRI comparison and from what they can see (certainly MRI resolution has its limits) there is no visible trace of the tumor, except for the artifacts of the surgery. However that's not to say that there isn't something there. A tumor about the size of an eraser head has about 30000 cells in it, so a few virulent cells could be present and invisible to the scan. It's not a perfect world, but the future looks bright... at least for the short term and medium time frame we know of, but that is also a double edge sword. It was made plain to me that since we can't know whether it's ALL gone, there always a 90% probability that it will be back... in time (one year, three years, who knows?). I'm hoping for the 10% side of things and can say good bye to it for good.

I am unbelievably fortunate though. Because of the location, even though this tumor is as nasty as they get, there is still reasonably good options for future treatment, should it ever come to that. Nearly all people with this type of tumor are not so lucky and can potentially suffer adverse results of additional treatment. No one is happier about this than I am.

For the future, I still have six months of off and on five day a month chemo treatments to deal with at twice the dose I was getting. The chemo actually hasn't been much of a problem. I take an anti-nausea pill 30 minutes before, and then the chemo drugs about bed time. I wake up with a bit of a bad taste in my mouth, but that about the extent of it.

MRIs will come at increasingly longer intervals and as long as I keep showing no new growth, it bodes better for me as the months pass. The doctors made it clear that they are not done with me and will continue to act aggressively if the need should arise. Now it's just a matter of monitoring myself and being sensitive to my normal behavior. I can no longer take glitches in my physiology for granted, but as long as I feel right, everything else is just as right.

I'm not sure how to pull this all in to a big picture, but for the moment it's time to relax and celebrate the current victory.

Too much too soon

It's been a while since I posted here, and I know a few of my friends look here from time to time to see how I'm doing, so I thought I'd better write something new.

I went through six weeks of chemo and radiation therapy, finishing up a week ago. While it wasn't the worst thing to happen to me, it certainly put my constitution to the test. The chemo was taken at night just before I went to bed, and with the anti-nausea pill taken a half hour before, so the treatment wasn't bad. Over the six weeks I lost the desire for anything more to eat than I needed to keep me going, because I developed a bad taste in the back of my throat. It also constitpated me pretty bad, and took almost the six weeks to get that dialed in.
The drive to and from the radiation treatment was 50 miles a day, so that got to be a drag. But all in all, it was a long but uneventful six weeks. I'm glad it's over... sort of.

I've been free of the treatment for about a week now and I'm not snapping back like I expected. It's going to take a while, and I need to be patient with myself. I tend to push myself too hard and then I pay the price... like last weekend.

I put in a new slab and moved one wheelbarrow at a time of almost 2 yards of concrete from the truck to the slab during what turned out to be the hottest day of the year so far. By the time it was over, I had worked myself into a state of extreme heat exhaution, and spent the next two days laying low and drinking as much as I can to recover to a minimum level. Dumb, dumb, dumb. I know better, but obviously that didn't stop me from doing it anyway.

I need to take it easy for a while and let my body tell me when I'm ready to go to the next level again.

Yoga boy

Sue and I attended our first yoga class last night. It's offered for free at the gym we go to, so we figured, "why not?" We have been talking about this for a little while, so this was an opportunity to check it out. We step into an ongoing class and figured we could at least get a taste.

Let me tell you... this stuff is not for the unprepared. By the end of the class I was sweating as much as I do on a normal visit to the gym. Although we didn't work all that hard, the application of balance, stretching, flexibility, and muscle tension was a real workout. I enjoyed it a lot, and I can see that I have miles to go before I will feel comfortable with my abilities in this class.

Sue felt the same way, and even though she is getting is pretty good shape, she definitely felt about the same as I did after class.

I think I should have tried this about ten years ago.

Glioblastoma Grade IV

I will be starting my therapy soon and it looks like I have quite a fight ahead of me. It parallels the old wagon train approach of putting the wagons in a circle to fight off the Indian attack. I don't know how well they succeeded in their method, but there is nothing more serious in my coming life.

I've done a significant amount of reading and research, and I can only hope that health technology makes a breakthrough fast. What I read does not look very promising. I have done what I can to prepare so far, and I am leaving no stone unturned in my quest to find some magic that'll turn this whole thing around, but short of the miracle of miracles, the long term prognosis is a dark fog.

This is what I learned so far:

The only therapy(ies) that could possibly cure primary brain tumors must:
1. Treat the whole brain
2. Cross the Blood:Brain barrier
3. Get to each and every tumor cell
4. Kill all cell types within the tumor
5. Spare the remaining normal brain.

Using the Glioblastoma Multiforme (GBM) as an example, the physician needs to consider the following factors:

GROWTH DYNAMICS (GBM)

Growth Fraction = 20 % (Only a percentage of the tumor is growing at any one time)
Cell Cycle Time = 2 - 5 Days (This is how long it takes a growing cell to reproduce)
Cell Loss = 80 - 90 % (A high percentage of cells spontaneously die off)
Doubling Time = Around 7 Days

Therefore, any therapy aimed at controlling the growth of this tumor must recognize the above dynamics. Therapy must catch the cells at the appropriate phase of the cell cycle (when they are sensitive to treatment), take into account tumor doubling time, and acknowlege that the growth fraction is relatively small.

There are other problems to take into account as well:

Many cells live in a low oxygen environment (hypoxic). These hypoxic cells are:

• * radio-resistant
• * often chemotherapy resistant
• * far from the blood supply

The blood supply to the tumor is quite peripheral, surrounding rather than entering it. The center of the tumor (necrotic center) contains living tumor cells. Therefore, much of the tumor is virtually unavailable to chemotherapy, radiation therapy, immunotherapy or any other therapy.

Standard Therapy

To date, the best treatment for the malignant astrocytoma and GBM is a combination of:

• * Surgery (Gross total removal, i.e. 80 - 99 %)
• * Radiotherapy (5,000 - 6,000 Rads)
• * Chemotherapy (BCNU)

This combination is now "standard therapy", and has been the benchmark to which all other therapies have been compared. Unfortunately, this protocol represents only a single month of improvement over surgery alone! In other words, in over thirty years of clinical research, very little has been done with any outstanding success! (The newly formed Foundation for Neuosurgical Research, however, is dedicated to changing this track record. It will be focused specifically on brain tumor patient improvement alone!)

"Standard therapy" in this country has failed to alleviate, despite spawning 400-plus new, different protocols. This presents a mind-boggling problem for patients and their families, especially when ofttimes they don't even know what a brain tumor really is! Added to the confusion is the enormous proliferation of new technologies becoming available to treat these tumors: lasers, stereotactic computers, cryosurgery, thermal killing machines, ultrasound, radiosurgery, the Gamma Knife, the X-Knife, photoirradiation, blood:brain barrier disruption, boron neutron capture, etc.

Where do science and technology meet the logic of brain tumor biology? What is purely experimental? What is logically worth the effort? What are the numbers? Where does a therapist's enthusiasm for new technology or protocol end, and logical approach to these tumors begin? These are just some of the newer questions which arise during the first weeks after coming in contact with the problem of a malignant brain tumor.

A Guide to the Perplexed

Considering all of the above, the following is a suggested method for approaching the therapy of malignant primary brain tumors. Be logical.

Imagine that a particular tumor weighs about 100 grams. Consider the following:

100 gm of tumor = 100 billion cells, approximately.

If a tumor size can double in volume in a matter of weeks, it would make sense to decrease the size of the mass of the tumor right away. Otherwise, a patient could not make it through a treatment course. Surgery is the way to radically reduce the volume of a tumor, removing anywhere from 80 to 99% of the tumor mass. Recent advances in surgical technologies have aided in the removal of brain tumor tissue with a newer, higher net percentage tumor reduction of 90-99%. These include computer assisted stereotactic surgery, laser instrumentation (carbon dioxide, argon, and Yag), ultrasonic aspiration, operative phototherapy, etc.

Consider the following:

• 90% removal of tumor (100,000,000,000 cells), leaves 10 billion cells
• 99% removal of tumor (100,000,000,000 cells), leaves 1 billion cells

Thus, no matter how good the local surgical therapy is, the patient is still left with at least 1 billion tumor cells!

There now remains the combination of therapies: follow up the initial volume reduction therapy with something else. The usual choices are radiotherapy or chemotherapy. In the best of circumstances, one could expect another 90-99% reduction in tumor cell number. Another 90-99.9 % cell reduction still leaves 1 million to 100 million cells.

The logical procedure now would be to hit the tumor again with yet something else, (usually radiation or chemotherapy) that might attack the remaining cell population.

If left without treating a third time, it is possible that the tumor could return to its original size in as few as 6 weeks, factoring in the numbers mentioned above.

This is not encouraging news, but Sue and I are committed to battle this thing with all the fight we have in us. Feel free to send any positive vibes our way. We're going to need them.

It pays to be wierd

What a difference a week makes. Last week at this time I had just had my skull opened up and a tumor taken out... and this week, I'm ready to pick up like nothing had happened.

I've had plenty of time to read and gather information on my present situation and I've learned some amazing things. That if you're a caucasian male over 50, you have basically a 2-3 in 100,000 chance of getting a tumor. Now the one I have or (had, I hope), is just a fraction of that number. In fact, a tumor in the cerebellum rarely occurs. Which is why I say it pays to be wierd. I never considered that to be an advantage, but I guess I'll stay with it.

I feel great, and although the 4 inch line of staples behind my right ear is not the best thing to see at the moment, I'm grateful for the fast action by the medical team at the Barrow's Neuroloical Instutute in Phoenix. Those people are THE BEST.

I witnessed first hand the other side of the coin. Guys with the same tumor in their cerebrum (the thinking part) and it made me realize how lucky I really was. Those people have a long and difficult recovery process, and a huge burden will be placed upon the people closest to them. I hope they get through it OK and can get their lives back on track. It won't be easy in any sense of the word.

I know I still have a long path ahead and I can't become complacent as time passes. It would become easy to do when you're feeling good and can forget about the trauma of the experience, but I need to be sure I don't. The quality of my life in the future depends on my never forgetting what just happened. I was incredibly fortunate, and with persistent awareness I can keep things this way.

It's been a wild week

Saturday thru Tuesday were bad days. Monday I couldn't keep anything down so we went to to doc on Tuesday morning. He told us to go to Barrows Neurological Institute ER as fast as we could arrange it and he would tell them I was coming. We went that afternoon and they admitted me to the ICU right away.

I had surgery the next day for the tumor and after spending the next few days there was released on Friday afternoon. The dizziness is gone, but I have a long road of radiation and Chemo therapy ahead. This tumor is somwhat of an oddity to they bacause tuomrs of this type aren't typically found in the cerebellum, but in the thinking part of the brain. This is extremely fortunate for me.

The Barrows folks are going to discuss my case and decide just what they are dealing with and how to treat it, but in the meantime I still need to focus on my life and my job and get back to normal as soon as possible. The sooner, the better.

Astrocytoma

Astrocytoma doesn't seem like a very scary word, but it should. The beauty and the curse about the internet is that there's more information than is possible (or needed) on any subject that you care to look up. Words that you didn't know existed, suddenly become part of your everyday existence, and change the way you look at your life and the people around you. That's what happened here.

A couple of weeks ago, I began to have symptoms of vertigo. I had had the flu or something like it recently and attributed my sudden equilibrium problems to an inner ear instability. My brother had suffered through this and I first assumed it was something like this. My problem was that my imbalance would last for three or four days, and it was all I could do to work my way from the bed to the couch. I had migraines and the muscles at the back of my neck ached incessantly. After four days I was able to go to work, but the vertigo never totally left me. It just subsided to a point that I felt competent to move about and not look like I was on something.

I functioned reasonably well for a few days, when I woke up one day and it was back with a vengence. I spent the next four days barely able to negotiate from one point in my house to another. I was nauseated from the vertigo so bad at times that I found it necessary to scurry on my hands and knees to the bathroom the vomit.

The doctor ordered a CT scan and called me the very same evening to inform me that I had an astrocytoma on my cerebellum, or in simple language, a tumor at the base of my brain. At this point I am waiting to see him again to come up with a plan to deal with it, but knowing it's there and the cause for all my balance problems has changed my life.

Of course I went out the the internet right away and did my research. However, not having any specifics yet raised more questions than it answered. I now know that my vertigo will not pass on its own and that surgery is the primary method with dealing with an astrocytoma. The grade of severity is as of yet unknown to me, but I'm hoping from the sketchy information the doctor gave me, that my own problem is not as bad as it could be.

At this point, I am functioning on a level that's a fraction of what it was. I've always pushed my physical abilities when I hit the gym or taught martial arts, or even working in the yard around the house. For the moment, those times are all on hold and I just do what I can without aggravating my condition. This is not the way I viewed the beginning of this year, that's for sure.

Another week gone

I started a new job on February 7. It's actually with a company I worked for before, and left to go to the job that laid me off. They were in need enough to want me back, so I took the position. It's a good thing I did, because other offers didn't come. I had a few people contact me, but they were just fishing and not actually interested in hiring me. In some cases, they were hoping I knew someone else that was looking for a job, but they weren't interested in me. That's a load of crap, but in cases like that, I don't even dignify their contact.

We've had the new Artha Gallery site up for about two and a half months now, but we seem to be drifting into obscurity. We've redone the site completely and added a lot more merchandise to broaden the appeal, but we are getting little activity. This is a puzzle and a disappointment. I'm not sure what to do about this at the moment, but it doesn't look like going with Yahoo was my best choice.

I'm glad February 2006 is history.

On the street

Well, Tuesday turned out to be the low-light of the week. Budget cuts and lack of work forced my employer to let me go. Reality still hasn't sunk in yet; I guess I'm still in shock. Sue hasn't said much either. I guess she senses my disappointment and loss and prefers to just say silent.

Since I didn't sleep very well, I've already put my resume out on all the various job boards, but in all the years I've had it out there, nothing ever came of it. I don't expect anything more than that now. For the moment I just plan on taking the next several days doing things that have stacked up in the normal course of daily life.

I haven't come up with a plan as to what to do next. Maybe I'll just have breakfast and think about my options.

Back to normal... sort of

Recovering from the holidays is underway and as a result the annual tradition of having more to do than time allows is also in full swing. Sometimes I feel like I'm at the precipice of chaos, without ever quite falling off it. Of course the load of stuff will eventually diminish and I’ll once again begin to feel like I have control over my time.

Sue and I got the last remaining links of Artha Gallery up and running, although there is still merchandise left to get on the site. This takes a little pressure off, and I can focus on some other matters for a bit.

The iPod Nano I got for Christmas makes my workouts at the gym seem a little less boring. I still am having trouble getting the after-holiday blues out of my system, so the momentum required to get my butt to the gym is ever-present.

Right now all I want to do is have some quiet time with Sue and forget about all of this other stuff.

Happy 2006! Where did 2005 go?

I can hardly believe this year has flashed by the way it did. At this point last year I was packing up to relocate back to Arizona, after a fantastic year in Seoul, Korea. Man, how I miss that place! I know now that if the conditions were conducive, I would move back there in a heartbeat. Living in Arizona has lost its appeal for me. I'm here because I have to live somewhere and work somewhere, but I can say now that this is not the right place.

Sue and I have accomplished a lot though. We both are working, bought a home, and have settled in about as much as any normal couple could be expected. I'm teaching Shinkendo through one of the local city parks and recreation associations and am enjoying it very much. I have always liked teaching, and this give me the double satisfaction of doing something I like and introducing new kids to the art. It's a great oportunity for me.

The most significant personal accomplishment we made is to restart ownership of a retail web site. You can find it at Artha Gallery. A long time friend (who in fact I have yet to meet in person) had this site and offered it to me to take over. Sue and I had considered cranking up a site, and when this chance was placed before us, it seemed like the right opportunity at the right time. We shall see. We don't expect to quit our day jobs any time in the near future, but it may offer us some other way of saving a little more money for the future.