Bad stuff first because it's short. It's getting late in an 8 day downcycle and the pain is tapering off. The catfish is really getting used to being a catfish again. Worst part is that 'the twins' still feel like I've been kicked. It's always that way.
And now to the bright spot in our program. This is a significant milestone. Monthly testing shows our progress and sets our milestones for the following month. Here's a recap of the story:
On August 26, 2006 I went to urgent care with an upper respiratory infection. I slid into the abyss over the next weeks, and on September 8, they put me in the hospital.
My September 20th bloodwork showed a very very very sick guy. All of my chemistry was off, my counts were off, and my prognosis looked bad. Certainly the diagnosis wasn't what I expected. Then I went on chemo and the numbers got better, month by month.
Well, now I'm here at the end of December, essentially 100 days from the lowest spot in my physical life, and my blood numbers are VIRTUALLY PERFECT!
Yes, you read that correctly. My blood numbers say I'm a healthy 51 year old. Sure, there's one little count that's fractionally right outside the box, but if you'd seen how far away that number once was, you'd consider it in the box too. In fact, that little number is the "killer number" and it's return to normalcy signals my probable healthy survival.
So, chemo works. Chemo also continues. I don't get to stop doing this crap yet. The doctors tell me we need to keep sledge-hammering the cancer into complete submission with this stuff, so while my numbers might be great right now, if I stop the chemo the cancer will screw up my system again.
So the saga continues, albeit with a significant high point at the end of the first act. I'll talk to my oncologist on Tuesday and lay out a plan. Until then, this is the intermission.
Saturday, December 30, 2006
Thursday, December 28, 2006
Day 3 of an 8 day down
OMFG this hurts. Everything...... I slept from 4p to 6a this morning and I still feel like rolled up dog doo. Believe me, I'm not trying to whine, but this is amazing. The pain just washes thru me in waves.... I see stars.... I have to stop breathing.... and then my head clears so I can move into a new position at my desk to steady myself for the next wave....
Meanwhile, I'm writing workflow and process documents. Wait, here comes another one....
Meanwhile, I'm writing workflow and process documents. Wait, here comes another one....
Sunday, December 24, 2006
11 thousand feet.
I must have caught an updraft in the seagull phase. I'm pretty amped. Still awake at nearly 3 am after a full day of building stuff and working on the future bathroom.
Thursday, December 21, 2006
Thal update
In spite of the fact that I'm on the catfish side of the lake, my elimination of Thalidomide from my process has continued to reap rewards in the intellectual department. As each residual molecule of ThalidoCrap leaves my fatty tissues, my brain gets better. I'm starting to remember what people pay me money for. I seem to recall the ability to fix stuff and make stuff happen. Damn it's good to feel that again!
(Technically, I don't know if Thalidomide can be stored in the fatty tissues and if the residuals are washing out of my system on a daily basis. However, whether it's a biological process or a simple "remembering how to think" process, I'm getting better every day. Now if I can just find some way to keep the pain from interfering with the continuity of my thoughts, I'll probably be almost as effective as I was several months ago.)
(Technically, I don't know if Thalidomide can be stored in the fatty tissues and if the residuals are washing out of my system on a daily basis. However, whether it's a biological process or a simple "remembering how to think" process, I'm getting better every day. Now if I can just find some way to keep the pain from interfering with the continuity of my thoughts, I'll probably be almost as effective as I was several months ago.)
Sunday, December 17, 2006
Thalidomide
It's day four of the seagull phase. Really feeling a bit "eaglish" today. See, four days ago, I also quit taking my Thalidomide (Thalmid). The results have been amazing. I can actually THINK again. My inertial guidance system has returned from the dead. I don't stagger. I know where I'm going. I remember things.
Thalidomide has kept me stoned for three months. THREE MONTHS! It's not even the part of the chemo that does the work. It's merely a mild booster..... and it's not worth it. Not at all. At least not for me. I have to be able to use my brain in my job. I have to be able to plan. It's not cool for everyone at work to think I have a drinking problem from the stagger and the weaving.
How in hell have I been driving a car? Jeepers that scares me. Four days off the stuff and I rode my motorcycle today (with some ice on the road - determination sometimes makes me stupid - not the Thalidomide's fault).
Anyway, no more Thal for me. None. Hell, it's not even a fun buzz, it's just debilitating and mildly depressing.
Thalidomide has kept me stoned for three months. THREE MONTHS! It's not even the part of the chemo that does the work. It's merely a mild booster..... and it's not worth it. Not at all. At least not for me. I have to be able to use my brain in my job. I have to be able to plan. It's not cool for everyone at work to think I have a drinking problem from the stagger and the weaving.
How in hell have I been driving a car? Jeepers that scares me. Four days off the stuff and I rode my motorcycle today (with some ice on the road - determination sometimes makes me stupid - not the Thalidomide's fault).
Anyway, no more Thal for me. None. Hell, it's not even a fun buzz, it's just debilitating and mildly depressing.
Thursday, December 14, 2006
Tuesday, December 12, 2006
If you've been counting.....
.....I'm in day 3 of the Catfish Chronicles. Cyclic misery eventually becomes customary.
Thursday, December 07, 2006
No quacks
I didn't kill any ducklings today. In fact, I was pretty mellow (except in traffic. Seattle drivers are sometimes amazingly clueless. They tend to think that turnsignals grant instant access to the next lane, impending collision or not.)
Wednesday, December 06, 2006
A million dollars.
Went back on the 'roids at about 6:30 this morning. As of about noon, all pain was gone. Gout was gone. The world is a colorful and wonderful place.
Tomorrow I may want to slay ducklings just for the fun of it, but today is great. (Don't worry. I have no access to ducklings. I used that sentence purely for imagery.)
Tomorrow I may want to slay ducklings just for the fun of it, but today is great. (Don't worry. I have no access to ducklings. I used that sentence purely for imagery.)
Tuesday, December 05, 2006
Documenting the downhill, part 8
It wasn't too bad a day physically. The catfish was just catfishing. Unfortunately it turned out to be a 13 hour workday with dinner at Taco Hell. I'm freaking exhausted.
The doctor's appointment this afternoon showed positive results. In the full spectrum of blood tests, there is only one item that's out of the norm. Yes folks JUST ONE. Unfortunately it's the "total protein" count, and thankfully it's just marginally high. We'll get a composite report in a few days that distinguishes the good proteins from the bad and we can compare those numbers to the baseline.... but it looks like I'm virtually healthy! At the end of this month of treatment, we'll consider dropping my chemo dose to more tolerable levels.
I'm quite relieved. Now I'm going to bed.
The doctor's appointment this afternoon showed positive results. In the full spectrum of blood tests, there is only one item that's out of the norm. Yes folks JUST ONE. Unfortunately it's the "total protein" count, and thankfully it's just marginally high. We'll get a composite report in a few days that distinguishes the good proteins from the bad and we can compare those numbers to the baseline.... but it looks like I'm virtually healthy! At the end of this month of treatment, we'll consider dropping my chemo dose to more tolerable levels.
I'm quite relieved. Now I'm going to bed.
Monday, December 04, 2006
Documenting the downhill, part 7
Ate a huge amount of sugar today. The endorphin rush seems to help. Bloody noses are increasing, just like they did during the previous 8 day downslide. Other than that, I'm just starting to settle in at the bottom of the lake.
Sunday, December 03, 2006
Documenting the downhill, part 6
Lazy day. No real motivation to do much. Just puttered around and goofed off. Catfished.
Documenting the downhill, part 5
This is actually yesterday's report. Went to the motorcycle show Saturday morning, picked up a free freezer locally, and then puttered around the house all day. All the walking and activity caused some peripheral neuropathy in the form of cramping and charley horses in my feet, calves, and hips. Gout is returning to my right foot. Bone pain is pretty consistent in my torso. Nothing insurmountable.
Friday, December 01, 2006
Documenting the downhill, part 4
Day four. More bone pain. Some water retention/swelling. Emotionally more stable (I think).
I feel like a bird that gets turned into a catfish every 4 days (and then back again 4 or 8 days later).
The catfish understands what it means to be a catfish. It's dark, murky, risky, and there's pressure everywhere. But that's the life of a catfish, so the catfish goes on.
The bird knows what it means to be a bird. It's light, airy, risky, and the weather can change at a moment's notice. That's the life of the bird, so the bird goes on.
The difficulty comes when the bird starts turning into the catfish or the catfish anticipates being a bird. See, it's not all that bad being a catfish because, after all, you're a catfish! But it's nothing compared to being a bird. Had the catfish never been a bird, it's life would be fine. Unfortunately the catfish gets to be a bird every 4 days and now it knows what it means to be both a catfish and a bird. The bird part thinks the catfish part sucks!
See, I was in the bottom of the lake in the ooze just ten weeks ago, so being a catfish would be a perfectly acceptable condition for me now if that was the limit of my expectation. Oddly, the "active ingredient" in my chemo also turns me into a bird (an emotionally unstable bird, but a bird none the less). While I'm not the high-flier I was last year, I'm at least a seagull and that's way better than being a catfish in my book.
I wanna be a bird again. Five more days of this catfish thing.
I feel like a bird that gets turned into a catfish every 4 days (and then back again 4 or 8 days later).
The catfish understands what it means to be a catfish. It's dark, murky, risky, and there's pressure everywhere. But that's the life of a catfish, so the catfish goes on.
The bird knows what it means to be a bird. It's light, airy, risky, and the weather can change at a moment's notice. That's the life of the bird, so the bird goes on.
The difficulty comes when the bird starts turning into the catfish or the catfish anticipates being a bird. See, it's not all that bad being a catfish because, after all, you're a catfish! But it's nothing compared to being a bird. Had the catfish never been a bird, it's life would be fine. Unfortunately the catfish gets to be a bird every 4 days and now it knows what it means to be both a catfish and a bird. The bird part thinks the catfish part sucks!
See, I was in the bottom of the lake in the ooze just ten weeks ago, so being a catfish would be a perfectly acceptable condition for me now if that was the limit of my expectation. Oddly, the "active ingredient" in my chemo also turns me into a bird (an emotionally unstable bird, but a bird none the less). While I'm not the high-flier I was last year, I'm at least a seagull and that's way better than being a catfish in my book.
I wanna be a bird again. Five more days of this catfish thing.
Thursday, November 30, 2006
Documenting the downhill, part 3
The ride is leveling off. Still not feeling "fresh", but it's a feeling I'm getting used to. Pain is tolerable. Discomfort is becoming acceptable.
I'm starting to realize that I'm getting used to the condition, just as I have gotten used to every permanent change in my body over the years. Accidents and injuries have changed my anatomy since high school, and a person just learns to deal with joints that don't work right or muscles that aren't attached any more. Now I'm just getting used a different kind of pain and altered behavior. Three months sick with only two months of chemo and I'm operating pretty much like a functional drunk. You know, one of those guys who drinks constantly, but who functions "normally" because you've never seen him "abnormal" (e.g. sober).
The roller coaster isn't scary any more. In fact, it's rather familiar. One might say boring and tedious. I don't look forward to any of it, but when it's there, it's there. So be it. (It doesn't mean I like it. It just means I know it well.)
I'm starting to realize that I'm getting used to the condition, just as I have gotten used to every permanent change in my body over the years. Accidents and injuries have changed my anatomy since high school, and a person just learns to deal with joints that don't work right or muscles that aren't attached any more. Now I'm just getting used a different kind of pain and altered behavior. Three months sick with only two months of chemo and I'm operating pretty much like a functional drunk. You know, one of those guys who drinks constantly, but who functions "normally" because you've never seen him "abnormal" (e.g. sober).
The roller coaster isn't scary any more. In fact, it's rather familiar. One might say boring and tedious. I don't look forward to any of it, but when it's there, it's there. So be it. (It doesn't mean I like it. It just means I know it well.)
Wednesday, November 29, 2006
Documenting the downhill, part 2
Day two of the 8 day crash. Feeling like crap. Flu-like symptoms. Tylenol is my friend.
Tuesday, November 28, 2006
Documenting the downhill, part 1
Day 1 of the 8 day downhill. Just 34 hours from my last 'roid dose, and merely 10 hours after I would have taken it (had it been on the schedule), I'm already feeling bone pain and general flu-like symptoms. They're not too bad, but they've been creeping up on me all day. Muscle tremors are increasing with loss of fine motor control. You don't want me doing microsurgery.
Monday, November 27, 2006
At the top of the coaster.
Today is day 4 of my last run up the roller coaster on this monthly cycle of steroids. 8 days of downturn begins tomorrow morning. Bone pain, testicular pain, digestive problems, and general malaise are always so much fun, particularly in simultaneous alternating combination. It's gonna be a hella ride! Hopefully I'm getting used to this and I can compensate for some of the misery I'll endure. Maybe I should just ignore it. (But like a 3 year old, it's hard to ignore.)
Saturday, November 25, 2006
Really good day today.
Day two of steroids and I played in the garage all day. Lots of stuff got done, but none of it was necessary. It was a playday with no people. Ed was off shopping with our friend Chat.
There is one other thing I wanna mention for my male readers. It's a therapeutic thing. Keep your pipes clean! You'd be surprised how important it seems to be to keep your prostate from languishing. Release of "internal pressure" seems to help with everything from urinary to colonic discomfort for a day or two, and certainly fresh applications of the therapy can be found without prescription. Never mind the instant gratification of the moment, I'm talking about the residuals here!
Anyway, I'm going back in the garage.
There is one other thing I wanna mention for my male readers. It's a therapeutic thing. Keep your pipes clean! You'd be surprised how important it seems to be to keep your prostate from languishing. Release of "internal pressure" seems to help with everything from urinary to colonic discomfort for a day or two, and certainly fresh applications of the therapy can be found without prescription. Never mind the instant gratification of the moment, I'm talking about the residuals here!
Anyway, I'm going back in the garage.
Thursday, November 23, 2006
Tuesday, November 21, 2006
Reality
Today is the 2nd day of the crash. I'm nearly at the bottom of the roller coaster again. Jeepers, I hate these days. (serious understatement)
Ya know, I've been sitting here for a couple of weeks thinking about how much better I've been feeling.....but that's relative.....better still isn't good.
And then today it struck me. For some odd reason, I've been walking around expecting to get better like I was gonna get over a cold or wait for a bone to heal. But in truth that's not the case. I've been lying to myself in the back of my mind. I have to remember that this is an incurable and permanent condition. I have to remember that Ed and I will deal with this for the rest of my life. It sucks.
Ya know, I've been sitting here for a couple of weeks thinking about how much better I've been feeling.....but that's relative.....better still isn't good.
And then today it struck me. For some odd reason, I've been walking around expecting to get better like I was gonna get over a cold or wait for a bone to heal. But in truth that's not the case. I've been lying to myself in the back of my mind. I have to remember that this is an incurable and permanent condition. I have to remember that Ed and I will deal with this for the rest of my life. It sucks.
Saturday, November 18, 2006
Recovery
Believe it or not, I recognize I'm getting better. There are some side effects and some issues I have to deal with every day, but I'm starting to feel pretty normal on a day to day basis.
My weight is back up to 164 and now I need to regain some muscle tone and work on my overall fitness. Believe me, I'm not cured, nor am I in remission, but it's not gonna hurt me to get back in shape. It might lower the BP and give me more endurance.
BTW - lowering the chemical load by eliminating the excess supplements seems to have helped a bit.
My weight is back up to 164 and now I need to regain some muscle tone and work on my overall fitness. Believe me, I'm not cured, nor am I in remission, but it's not gonna hurt me to get back in shape. It might lower the BP and give me more endurance.
BTW - lowering the chemical load by eliminating the excess supplements seems to have helped a bit.
Friday, November 17, 2006
Update
It's been about a week since I updated this thing. I'm back on a regular 28 day chemo cycle. Basically I've been up and down the roller coaster once, and I'm nearly at the top of the ride for the second time again. I'll get another drip today of the magic bone glue that's supposed to keep me from becoming an 80 year old Japanese female rice-paddy worker.
System overload seems to be a problem. I've eliminated some of the supplements that have been recommended by others.... and I think I'm feeling better. Less hiccups, less hysteria, less side effects (although peripheral neuropathy has increased slightly). I think I'm going to keep reducing the chemical load and see if that helps. Kidney function is still somewhat low, and I might be having a problem getting all that extra crap out of my system. The human lab continues to experiment with itself.
I just got back from a 4 day road trip to attend Philips PACS training. The road wasn't any more difficult for me than my regular daily routine. I sure was glad to get home though. I can't believe I did that roadie crap for 26 years.
System overload seems to be a problem. I've eliminated some of the supplements that have been recommended by others.... and I think I'm feeling better. Less hiccups, less hysteria, less side effects (although peripheral neuropathy has increased slightly). I think I'm going to keep reducing the chemical load and see if that helps. Kidney function is still somewhat low, and I might be having a problem getting all that extra crap out of my system. The human lab continues to experiment with itself.
I just got back from a 4 day road trip to attend Philips PACS training. The road wasn't any more difficult for me than my regular daily routine. I sure was glad to get home though. I can't believe I did that roadie crap for 26 years.
Wednesday, November 08, 2006
End of the month.
Yesterday was the end of the first month of chemo. A visit to the oncologist went well, but I hadn't had my blood tests yet so there wasn't much to discuss. Now I know I have to take the upper hand in this area too. There won't be a problem next time.
But we have the blood test results today and the numbers look REALLY good. The chemo is working and I'm "staying the course" without any changes in the plan. With results like these, I can tolerate a little insanity.
Here are the significant numbers from the CBC/Platelet/Differential test.
Leukocyte count - was low, now in normal range
RBC - still low, but 30% higher
Hemoglobin - still low, but 35% higher
Hematocrit - still low, but 40% higher
RDW - still high, but 9% lower
Platelet count - incr. from 46 to 304 and in range.
Myelocytes - zero!
Blasts - zero!
NRBC/100WBC - just 1!
Plasma cells - decrease of 33% from 3% to 2%
And now from the complete metabolic panel:
Sodium and Chloride - back in range.
Creatinine - back in range
Total Protein - down 32% (9.3 - goal of <8)
Alk Phos - went up over range - curious.
Alt - went up too - hmmmmm
I also picked up my heart monitor today and I get to play with it for two weeks. It'll be interesting to see if there's a correlation between the heart arrhythmia and the steroids (that I went back on this morning).
Eight days on Thalidomide alone. Thal isn't the thing that makes me nuts.... it's definitely the 'roids. Definitely. Definitely. Yeah, definitely. I'm a good driver.
Some of you won't get that joke.
But we have the blood test results today and the numbers look REALLY good. The chemo is working and I'm "staying the course" without any changes in the plan. With results like these, I can tolerate a little insanity.
Here are the significant numbers from the CBC/Platelet/Differential test.
Leukocyte count - was low, now in normal range
RBC - still low, but 30% higher
Hemoglobin - still low, but 35% higher
Hematocrit - still low, but 40% higher
RDW - still high, but 9% lower
Platelet count - incr. from 46 to 304 and in range.
Myelocytes - zero!
Blasts - zero!
NRBC/100WBC - just 1!
Plasma cells - decrease of 33% from 3% to 2%
And now from the complete metabolic panel:
Sodium and Chloride - back in range.
Creatinine - back in range
Total Protein - down 32% (9.3 - goal of <8)
Alk Phos - went up over range - curious.
Alt - went up too - hmmmmm
I also picked up my heart monitor today and I get to play with it for two weeks. It'll be interesting to see if there's a correlation between the heart arrhythmia and the steroids (that I went back on this morning).
Eight days on Thalidomide alone. Thal isn't the thing that makes me nuts.... it's definitely the 'roids. Definitely. Definitely. Yeah, definitely. I'm a good driver.
Some of you won't get that joke.
Monday, November 06, 2006
A couple of pics.
For those who have never met me, here are some pics of the old (younger) Andre. I'll add a pic or two of the new (older) Andre as soon as I get some. As you might be able to see, I was a fairly active and fit guy at 50 (bottom pic) and a decent athlete at 46 (upper pic).
Runt pics are forthcoming.
Sunday, November 05, 2006
Food for the day.
Ok, here's what I ate today.
BREAKFAST
Bowl of yogurt with blueberry jam
2 Eggo waffles with syrup
2 sausage patties
Glass Orange juice
Coffee with sugar and milk
2 Sandies cookies
LUNCH
Dip & chips
2 Corndogs
Large coffee with sugar and milk
SNACK
16 oz whole milk
6 Sandies cookies
DINNER
Plate of spagetti
Italian sausage
small piece of bread
Glass of orange juice
Dip and chips
Ice cream (about a scoop)
Plus a couple of glasses of juice thru the day. This is pretty typical and my weight is hovering around 158.
BREAKFAST
Bowl of yogurt with blueberry jam
2 Eggo waffles with syrup
2 sausage patties
Glass Orange juice
Coffee with sugar and milk
2 Sandies cookies
LUNCH
Dip & chips
2 Corndogs
Large coffee with sugar and milk
SNACK
16 oz whole milk
6 Sandies cookies
DINNER
Plate of spagetti
Italian sausage
small piece of bread
Glass of orange juice
Dip and chips
Ice cream (about a scoop)
Plus a couple of glasses of juice thru the day. This is pretty typical and my weight is hovering around 158.
Good Day.
Sunday, November 5, 2006 was a pretty decent day for me. The roller coaster ride seems to have come to that part where the cars are just gliding along the track at ground level. Normally that means we'll start the clack-clack-clack of the climb to the top of some enormous precipice, but I know this glide has to go on for a few more days before I personally "commence to clacking" again. Bone pain has been moderate and easily manageable with acetamenophen.
I spent the entire day cleaning out and rearranging the garage, actually doing some pretty strenuous stuff including loading the truck for the dump later in the week. I'm pretty tired right now and I know I'll sleep well tonite. After dinner, I'm going to post a list of everything I've eaten today. My mouth and my tummy feel like a teenaged kid. This is the first time in probably 20 years that I can eat virtually anything I want without repercussions. It's amazingly fun.
I spent the entire day cleaning out and rearranging the garage, actually doing some pretty strenuous stuff including loading the truck for the dump later in the week. I'm pretty tired right now and I know I'll sleep well tonite. After dinner, I'm going to post a list of everything I've eaten today. My mouth and my tummy feel like a teenaged kid. This is the first time in probably 20 years that I can eat virtually anything I want without repercussions. It's amazingly fun.
Saturday, November 04, 2006
Hello to my readers.
I just wanna say hello to all the people who read this on a regular basis. It means a lot to me that you take time from your day to listen to my rambling. Thanks.
Friday, November 03, 2006
Unenviable task.
This weekend is gonna be a hum-dinger. See, I haven't told my mom or my sister. We're just not that close...... My fault - I enjoy my privacy.
But I wrote them a letter, and my brother is going to deliver it to them in person this weekend. I don't envy him. Hell, I don't envy my mom or sister either. It's not going to be easy for any of them. On the other hand, it's not too easy for Ed and I.
Whatever burden they assume will be something they'll have to bear on their own. I don't have room for it on my shoulders. It's not that I don't care. It's just that I don't want to deal with it. There, I said it. I'm not gonna be Superman.
But I wrote them a letter, and my brother is going to deliver it to them in person this weekend. I don't envy him. Hell, I don't envy my mom or sister either. It's not going to be easy for any of them. On the other hand, it's not too easy for Ed and I.
Whatever burden they assume will be something they'll have to bear on their own. I don't have room for it on my shoulders. It's not that I don't care. It's just that I don't want to deal with it. There, I said it. I'm not gonna be Superman.
Thursday, November 02, 2006
The library.
I was just thinking.... my brother once delivered a eulogy that equated the death of a man to the burning of a library. Every man has a library of information inside him and his demise often removes his 'books' from the public domain.
I have no intention of having my library burn.... but let me tell you, I'm rearranging the stacks right now and I'm not following Dewey.
Marbles? Did anyone say marbles?
I have no intention of having my library burn.... but let me tell you, I'm rearranging the stacks right now and I'm not following Dewey.
Marbles? Did anyone say marbles?
Down the other side of the roller coaster.
Two days off the steroids. Six more to go before I can get back on them. I feel like a junkie needing a fix. Bone pain returns in spades, the buzz from the Thalidomide is perpetual. My mind wanders and suddenly I wake up to lucidity for a few moments and feel human again. Brief flashes of my former self. Oddly, that guy feels lonely.
Imagine sticking an old 9 volt battery on your tongue.... all over your body..... 24 hours a day.... and being drunk..... and in a bar fight you're losing..... and this is as good as it gets. It's what I've come to expect every single day and every night.
I dunno if I'm depressed..... but I'm certainly exhausted. I guess I'll know I'm depressed when my brain starts to turn off.
Imagine sticking an old 9 volt battery on your tongue.... all over your body..... 24 hours a day.... and being drunk..... and in a bar fight you're losing..... and this is as good as it gets. It's what I've come to expect every single day and every night.
I dunno if I'm depressed..... but I'm certainly exhausted. I guess I'll know I'm depressed when my brain starts to turn off.
Wednesday, November 01, 2006
Holy Moly!
Wow.... Staying on the Thalidomide, off the Dexamethasone for the next 8 days.... The roller coaster ride is pretty amazing and it's gonna get worse. I'm crashing HARD from the steroids (Dex) and the Thal keeps me completely stoned.... I mean STONED, drunk, staggering, goofy, mindless, zombified, stupid. Jeepers! Who am I?
Upside? I'm learning patience, acceptance, tolerance, calmness, and...... maybe something else, but I dunno..... I'm not all here right now.
Upside? I'm learning patience, acceptance, tolerance, calmness, and...... maybe something else, but I dunno..... I'm not all here right now.
Tuesday, October 31, 2006
General upswing, I guess
In general, I guess I feel better. The Thalidomide makes me completely stoned though, so we're doing some experiments with timing the pill so I don't feel so zombied-out at work.
Wednesday, October 25, 2006
Bad stuff
My BP is way high, and I had an episode with cardiac arrhythmia tonite. I guess I'll email my PCP.
Tuesday, October 24, 2006
A change in chemistry
Your favorite lab-rat gets to do an experiment on himself this week. I'm going to go off the Vitamin B6 I've been taking. Side effects are making it seem like I need to do this.... Will keep you posted.
Monday, October 23, 2006
GOOD NEWS!
I just got my 'protime' numbers back. This is a test of my blood-clotting rate. IT'S BACK IN NORMAL RANGE! Yipee!
Sunday, October 22, 2006
Hiccup solution
It seems we've (quite literally) stumbled upon a cure for the hiccups. Ingestion of at least 4 fluid ounces of Cabernet-Sauvignon during dinner has eliminated the hiccups from my last two evenings. It works for me.
Progress report
Ok, I'm at the end of the second (4 day mini) round of steroids, and on my 12th day of Thalidomide. Bone pain is virtually absent, so I've been off morphine for about 3 days now. I haven't had to use tylenol much at all. The upside is that my digestive tract is returning to normal, which is positively impacting my urinary tract, which is improving my libido just a bit. Basically, this is all good. There's only one thing I'm still watching out for..... and that's my body weight. 160# this morning. 185# when I left Dallas 11 months ago. 180# before the trigger event for this adventure. So I've lost 20# in about 2 months. Maybe I should ask Jenny Craig when my skin is gonna shrink back to my new body shape. I look like a freaking lizard with my clothes off. Wrinkles and excess skin.... folds and flaps....... You know, like some 75 year old lady who decides to get back into shape, but who generally arrives in a room about a minute before her all of her skin gets there. (It's not really that bad. There aren't any 'granny-flaps' yet, thank goodness.)
Anyway, life gets better thru chemistry........ ;-)
Anyway, life gets better thru chemistry........ ;-)
Friday, October 20, 2006
Last night I had a vision.....
.....a mini-dream..... a premonition?
Death got into the shower with me. He slipped on the wet surface and his head came off when it hit the edge of the tub. Death DIED at my feet!
I got the hell out of the shower.
Death got into the shower with me. He slipped on the wet surface and his head came off when it hit the edge of the tub. Death DIED at my feet!
I got the hell out of the shower.
Altered States
It's really interesting what a drastic change in body chemistry can do. Sometimes I find myself wandering thru what I normally percieve as reality in an semi-unreal state. It's nothing too drastic, merely a shift in vision, hearing and 6th sense perception. I can be involved in conversations that I'm fully "in gear" with, and yet the conversation is more real than the person I'm talking to..... It's as if I'm being spoken to from a movie or another place in time..... It's real, but I don't get the sense that the person is on the same plane as I..... Get it?
I know the shift is coming from me... from the chemo and all the other wierd stuff I put in my mouth every 6 hours. Certainly I'm not going schitzo and beginning to think the world is wrong and I'm right. It's just interesting to watch..... I'm using my own brain as a behavioral observatory. Reality does shift.
Chemo seems to be eliminating much of the pain. I've been off morphine for a couple of days and am managing it all with occasional acetamenophen. It's not hard right now. Otherwise, I'm just getting used to the biological changes.... they're minor, and in the grand scheme of things, relatively unimportant. Problems with my stomach and intestines, altered vision, altered hearing, strange smells, high blood pressure at times, nearly absent sex drive, continued loss of weight.
Some things get better, some things just change.
I know the shift is coming from me... from the chemo and all the other wierd stuff I put in my mouth every 6 hours. Certainly I'm not going schitzo and beginning to think the world is wrong and I'm right. It's just interesting to watch..... I'm using my own brain as a behavioral observatory. Reality does shift.
Chemo seems to be eliminating much of the pain. I've been off morphine for a couple of days and am managing it all with occasional acetamenophen. It's not hard right now. Otherwise, I'm just getting used to the biological changes.... they're minor, and in the grand scheme of things, relatively unimportant. Problems with my stomach and intestines, altered vision, altered hearing, strange smells, high blood pressure at times, nearly absent sex drive, continued loss of weight.
Some things get better, some things just change.
Sunday, October 15, 2006
Freakin' hiccups!
Hiccups. Hiccups. Hiccups. I get about 1.5 hours sleep in between sessions. Ever been woken up by hiccups?
They irritate everything in your chest after a while. (/Whine mode on/) Makes me wanna just die because the pain is starting to come back too. (/Whine mode off/)
We even tried the ig-NOBEL trick.... it only worked once......
Anyway, off to bed again.
They irritate everything in your chest after a while. (/Whine mode on/) Makes me wanna just die because the pain is starting to come back too. (/Whine mode off/)
We even tried the ig-NOBEL trick.... it only worked once......
Anyway, off to bed again.
Saturday, October 14, 2006
Living in the here and now.
This is gonna seem a bit strange....... But I've sorta done a quick survey of my general reaction(s) to life-threatening events in my life. Historically, I've always become more "carpe diem" in my attitude toward my continued survival.
After my 6 days of hospitalization from a farming accident, I wandered away from corporate pursuits and took up roadracing again (to some success).
After every hospital visit from roadracing, I delved more deeply into the sport and never let it set me back much.
What is my attitude going to be like if I kick Myeloma in the ass? Will I become more of an adventurer within the limits of my responsibilities here? Will I shirk my responsibilities and ride coast to coast to coast to coast while I write my memoirs?
And what of Ed? How will he take to this drastic change in me? Will I even change? Stay tuned.
After my 6 days of hospitalization from a farming accident, I wandered away from corporate pursuits and took up roadracing again (to some success).
After every hospital visit from roadracing, I delved more deeply into the sport and never let it set me back much.
What is my attitude going to be like if I kick Myeloma in the ass? Will I become more of an adventurer within the limits of my responsibilities here? Will I shirk my responsibilities and ride coast to coast to coast to coast while I write my memoirs?
And what of Ed? How will he take to this drastic change in me? Will I even change? Stay tuned.
Friday, October 13, 2006
Chemo Day Three
Hickups. Every evening starting at 5p and ending at about 10p when I go to bed. Not fun.
Pain - Greatly reduced. The doc suspected bone pain as the culprit and thought the chemo might help. It did.
Weight gain - 3 lbs to 167. This is a good thing.
Vision - inverted. Suddenly I don't need reading glasses but I can't read street signs at a distance. Wondering if it's temporary.
Petichae(?) - small blood clots under my skin from spontaneous hemorrhages. Enough to look "freckly". Mostly on my legs. Appeared first day but don't seem to have continued. Just need to watch them.
Digestive system - back to functioning normally. Yippee!
Kidney function - appears to be improving.
So here's the real deal..... I guess my body is reacting well to the drugs, but my brain and control systems are sorta screwed up. The steroids are making me aggressive. Thank goodness they're 4 days on and 4 days off. My vision was a little strange today because it was foggy on my way to work. Nothing quite like a vision change on a visually challenging day!
I don't think I'm much fun to be with, but I'm improving. Now we just need to watch the numbers and make sure they're improving month to month. We just got some test numbers back that weren't so hot... Seems I'm producing ~100 times the number of antibody proteins I should be. If that number starts to go down, then the chemo is working. Gonna keep an eye out for that. Anyway, that's the story for today. Going to sleep now.
Pain - Greatly reduced. The doc suspected bone pain as the culprit and thought the chemo might help. It did.
Weight gain - 3 lbs to 167. This is a good thing.
Vision - inverted. Suddenly I don't need reading glasses but I can't read street signs at a distance. Wondering if it's temporary.
Petichae(?) - small blood clots under my skin from spontaneous hemorrhages. Enough to look "freckly". Mostly on my legs. Appeared first day but don't seem to have continued. Just need to watch them.
Digestive system - back to functioning normally. Yippee!
Kidney function - appears to be improving.
So here's the real deal..... I guess my body is reacting well to the drugs, but my brain and control systems are sorta screwed up. The steroids are making me aggressive. Thank goodness they're 4 days on and 4 days off. My vision was a little strange today because it was foggy on my way to work. Nothing quite like a vision change on a visually challenging day!
I don't think I'm much fun to be with, but I'm improving. Now we just need to watch the numbers and make sure they're improving month to month. We just got some test numbers back that weren't so hot... Seems I'm producing ~100 times the number of antibody proteins I should be. If that number starts to go down, then the chemo is working. Gonna keep an eye out for that. Anyway, that's the story for today. Going to sleep now.
Wednesday, October 11, 2006
Surprise, surprise, surprise
Ok, so I got a call from the oncologist today. Apparently my blood tests weren't so great last night, so I've got to go in for two more units of blood at 9 AM tomorrow. That will add up to a total of 8 units since September.
I took a handful of steroids this morning. (10, as prescribed.) I've felt slightly manic and very good physically all day. Imagine what I'll feel like when I have a complete blood count and the steroids! Anybody wanna jog the 17 miles to work?
I discovered a horrible side effect of the steroids today. THEY MAKE EVERYTHING TASTE WONDERFUL! I had split-pea soup with ham chunks for lunch today in the hospital cafeteria. It qualified as one of the tastiest meals I've ever had in my life. This is NOT a good thing. I'll have to keep that little problem under control.
I took a handful of steroids this morning. (10, as prescribed.) I've felt slightly manic and very good physically all day. Imagine what I'll feel like when I have a complete blood count and the steroids! Anybody wanna jog the 17 miles to work?
I discovered a horrible side effect of the steroids today. THEY MAKE EVERYTHING TASTE WONDERFUL! I had split-pea soup with ham chunks for lunch today in the hospital cafeteria. It qualified as one of the tastiest meals I've ever had in my life. This is NOT a good thing. I'll have to keep that little problem under control.
Tuesday, October 10, 2006
Chemicals and chemotherapy.
It begins.
Procrit gets injected into my leg once a week so I'll grow more red blood cells.
Vitamin B6 and Warfarin will counteract the side effects of:
Thalidomide, which will kill the cancer cells and enhance the effects of:
Dexamethasone, which is a steroid that will turn me into Mr. Hyde as it kills more cancer cells.
And next Monday, I get a bisphosphonate to help strengthen my skeletal bones.
Side effects? Hell, you don't want me to start.... but I'm really worried about the steroids.... Imagine me, with my personality, all wound up like a muscle bound steroid freak. I've already told Ed to find a "safe word" he can use when I'm all 'roided-out.
So far, I've injected myself with some Procrit. Everything else starts in the morning. Wish me luck.
Oh, did I mention that the Thalidomide pills are $107.14 each? I take one a day.
Procrit gets injected into my leg once a week so I'll grow more red blood cells.
Vitamin B6 and Warfarin will counteract the side effects of:
Thalidomide, which will kill the cancer cells and enhance the effects of:
Dexamethasone, which is a steroid that will turn me into Mr. Hyde as it kills more cancer cells.
And next Monday, I get a bisphosphonate to help strengthen my skeletal bones.
Side effects? Hell, you don't want me to start.... but I'm really worried about the steroids.... Imagine me, with my personality, all wound up like a muscle bound steroid freak. I've already told Ed to find a "safe word" he can use when I'm all 'roided-out.
So far, I've injected myself with some Procrit. Everything else starts in the morning. Wish me luck.
Oh, did I mention that the Thalidomide pills are $107.14 each? I take one a day.
Monday, October 02, 2006
Practicality
I told a very close friend the bad news. He cried, and with a squeaky little voice that most men would never admit to owning, he said:
"I always knew you'd pick a chicken-shit way to die."
It made me proud. See, I've been involved with some really dangerous stuff. I'm not talking about "Jackass" stupid stuff, but certainly the kind of stuff most people wouldn't do on a bet even if they were high on PCP. Some of it has damn-near killed me, and all of it could have killed me. Obviously it didn't. (Either that, or there are blogs in Hell and you're reading mine.)
And so, for my friend to say what he did was an acknowledgement that I'd survived (and therefore conquered) danger and death. That's an accomplishment as far as I'm concerned.
But it made me think.......... Have I always been ready to accept death? Don't misunderstand. I never chased death per se. The "success" of my adventures could only be measured by eluding death, by watching the black robed spectre walk away pissed-off, time after time.
I now find myself wondering if I'm just being smug.... assuming that I'll be able to keep digging clams in the shallows of the River Styx, ignoring the rules of tradition and 'fraidy-cats', merely assuming that I can win at the game again by sheer will and contempt of the institution of death. Arrogance can be a strong-suit in certain situations and I can be amazingly effective at it.
Hell, maybe I don't even believe in death. I don't know. I've never done it before. I'll keep you posted.
"I always knew you'd pick a chicken-shit way to die."
It made me proud. See, I've been involved with some really dangerous stuff. I'm not talking about "Jackass" stupid stuff, but certainly the kind of stuff most people wouldn't do on a bet even if they were high on PCP. Some of it has damn-near killed me, and all of it could have killed me. Obviously it didn't. (Either that, or there are blogs in Hell and you're reading mine.)
And so, for my friend to say what he did was an acknowledgement that I'd survived (and therefore conquered) danger and death. That's an accomplishment as far as I'm concerned.
But it made me think.......... Have I always been ready to accept death? Don't misunderstand. I never chased death per se. The "success" of my adventures could only be measured by eluding death, by watching the black robed spectre walk away pissed-off, time after time.
I now find myself wondering if I'm just being smug.... assuming that I'll be able to keep digging clams in the shallows of the River Styx, ignoring the rules of tradition and 'fraidy-cats', merely assuming that I can win at the game again by sheer will and contempt of the institution of death. Arrogance can be a strong-suit in certain situations and I can be amazingly effective at it.
Hell, maybe I don't even believe in death. I don't know. I've never done it before. I'll keep you posted.
Saturday, September 30, 2006
Trust me, I'm a professional!
Communication...... I've come to believe that the difference between a SuperDoc and an AverageDoc is communication.
I visited a SuperDoc early last week. She communicated with me, then she communicated with my AverageDoc. Turns out that they knew the same info, shared the same opinion, and each one convinced the other to change a small part of the project plan. Unfortunately, AverageDoc still doesn't get it.
PATIENTS DON'T KNOW WHAT THEY DON'T KNOW.
So it's up to the doc to answer patient questions and then tell thier patient the answers to the questions they DIDN'T ask!
It's not right to tell the patient "Come in for some x-rays and we're going to give you some pills."
"What are the Xrays for? What do the pills do?"
"Oh, the Xrays will tell us how your bones are doing and the pills will start your chemo."
"Ok, why are you interested in my bones, and what are the side effects of the chemo meds?"
"Oh, well....... it's very complicated."
"Then start explaining. I have time."
"Trust me, I'm a professional."
Professionals make mistakes and I don't come equipped with a reset button. Explain the whole thing to me and let me make some decisions (or at least understand the program.) Let me know what to expect so I can at least tell you if it's working or not. I can be our first line of defense against failure if I know what's supposed to happen.
Quite honestly, I feel like I'm a car and my owner isn't being allowed to watch what the mechanic is doing.
So if you're a doctor, don't leave the patient out of the equation. You should be treating a patient, not a disease! Subtle difference. Major importance.
I visited a SuperDoc early last week. She communicated with me, then she communicated with my AverageDoc. Turns out that they knew the same info, shared the same opinion, and each one convinced the other to change a small part of the project plan. Unfortunately, AverageDoc still doesn't get it.
PATIENTS DON'T KNOW WHAT THEY DON'T KNOW.
So it's up to the doc to answer patient questions and then tell thier patient the answers to the questions they DIDN'T ask!
It's not right to tell the patient "Come in for some x-rays and we're going to give you some pills."
"What are the Xrays for? What do the pills do?"
"Oh, the Xrays will tell us how your bones are doing and the pills will start your chemo."
"Ok, why are you interested in my bones, and what are the side effects of the chemo meds?"
"Oh, well....... it's very complicated."
"Then start explaining. I have time."
"Trust me, I'm a professional."
Professionals make mistakes and I don't come equipped with a reset button. Explain the whole thing to me and let me make some decisions (or at least understand the program.) Let me know what to expect so I can at least tell you if it's working or not. I can be our first line of defense against failure if I know what's supposed to happen.
Quite honestly, I feel like I'm a car and my owner isn't being allowed to watch what the mechanic is doing.
So if you're a doctor, don't leave the patient out of the equation. You should be treating a patient, not a disease! Subtle difference. Major importance.
Monday, September 25, 2006
I fixed......
I fixed the 'comments' section. You can now add your own witty reparte' to the equation. Just click on the "comments" at the bottom of each post.
Some doctors suck.
Ok, let me start off by saying I DO NOT HAVE WALDENSTROM'S MACROGLOBULINEMIA. We were misled by a young doctor who apparently has unusual motivations. Maybe he had a blank space in his Oncology Bingo that could only be filled with Waldenstrom's Macroglobulinemia. Well, he screamed BINGO and stood up too quickly, so he embarrassed himself when they checked his card.... and it turned out he only had another Multiple Myeloma.
Here's the deal. Internist #1 attended to me in the hospital, scheduled tests, came to a decision, and told me NOTHING DEFINITIVE. I could see concern in her face and voice, but she was reasonable and prudent in her distribution of information. I respect her actions.
Internist #2 is my PCP. #1 talks to #2 and they collectively derive the probability that I have Multiple Myeloma. Internist #2 tells me so. He also tells me that they have consulted with an oncologist who wants to see me ASAP and PDQ.
So Ed and I arrive at the oncologist's (#3) and we find him reading a web page on Waldenstrom's Macroglobulinemia. Once he's done his extensive research, he comes into my room and announces that I probably don't have Multiple Myeloma, but I almost definitely have Waldenstrom's Macroglobulinemia. He even asks if I'm a betting man......
Duh! Today I got the following email:
Andre,
The test results are just about all back - it looks like you have multiple myeloma (IgA-lamba). We should also get a series of xrays to look for any bone lesions from myeloma. There are some additional tests being done on your bone marrow biopsy that aren't back yet, but it doesn't change your initial therapy.
We should start therapy ASAP of 2 different medications - one called thalidomide, the other called dexamethasone (both are pills).
Also, since you have anemia, we should also start a medication called Procrit (injection) to help your body make more red blood cells.
Do you want to come in this week to get started?
1) Thanks for playing YoYo with Ed's and my emotions.
2) Thanks for distracting us from our prior research.
3) Thanks for delaying / confusing our establishment of outside connections.
4) Thanks for thinking I'm gonna trust you without a very confirmatory 2nd opinion.
So, here's a lovely recap of the disease and what I'll be enduring. It's a disease of the blood that's based in the bone marrow. The way to put it in remission is to harvest a bunch of good stem cells from my bone marrow. Then they'll kill off all the bone marrow and all of the white blood cells. Then they'll put the good bone marrow stem cells back in me and hope they grow without re-creating the problem.
Yup, for those of you who remember high-school biology, that means I'll have NO immune system function for about 10 weeks. I get to live on antibiotics and boiled water in two rooms of my house for 10 weeks. Everything has to be cooked thoroughly, everything has to be pretty much tasteless (how do you sterilize table salt?) Are ya paintin' a little picture in yer head yet?
Of course, I get this kinda fun treatment after they chemo me 'til I glow in the dark and I'm hollow inside. Betcha I get down to 145#.... sexy hott!
It's really not gonna be as bad as the movie I just put in your head..... I'm just pissed off at the doc and I'm venting......
Good side? I can spell it. Other good side? There are enough patients that most doctors have seen other patients.
Here's the deal. Internist #1 attended to me in the hospital, scheduled tests, came to a decision, and told me NOTHING DEFINITIVE. I could see concern in her face and voice, but she was reasonable and prudent in her distribution of information. I respect her actions.
Internist #2 is my PCP. #1 talks to #2 and they collectively derive the probability that I have Multiple Myeloma. Internist #2 tells me so. He also tells me that they have consulted with an oncologist who wants to see me ASAP and PDQ.
So Ed and I arrive at the oncologist's (#3) and we find him reading a web page on Waldenstrom's Macroglobulinemia. Once he's done his extensive research, he comes into my room and announces that I probably don't have Multiple Myeloma, but I almost definitely have Waldenstrom's Macroglobulinemia. He even asks if I'm a betting man......
Duh! Today I got the following email:
Andre,
The test results are just about all back - it looks like you have multiple myeloma (IgA-lamba). We should also get a series of xrays to look for any bone lesions from myeloma. There are some additional tests being done on your bone marrow biopsy that aren't back yet, but it doesn't change your initial therapy.
We should start therapy ASAP of 2 different medications - one called thalidomide, the other called dexamethasone (both are pills).
Also, since you have anemia, we should also start a medication called Procrit (injection) to help your body make more red blood cells.
Do you want to come in this week to get started?
1) Thanks for playing YoYo with Ed's and my emotions.
2) Thanks for distracting us from our prior research.
3) Thanks for delaying / confusing our establishment of outside connections.
4) Thanks for thinking I'm gonna trust you without a very confirmatory 2nd opinion.
So, here's a lovely recap of the disease and what I'll be enduring. It's a disease of the blood that's based in the bone marrow. The way to put it in remission is to harvest a bunch of good stem cells from my bone marrow. Then they'll kill off all the bone marrow and all of the white blood cells. Then they'll put the good bone marrow stem cells back in me and hope they grow without re-creating the problem.
Yup, for those of you who remember high-school biology, that means I'll have NO immune system function for about 10 weeks. I get to live on antibiotics and boiled water in two rooms of my house for 10 weeks. Everything has to be cooked thoroughly, everything has to be pretty much tasteless (how do you sterilize table salt?) Are ya paintin' a little picture in yer head yet?
Of course, I get this kinda fun treatment after they chemo me 'til I glow in the dark and I'm hollow inside. Betcha I get down to 145#.... sexy hott!
It's really not gonna be as bad as the movie I just put in your head..... I'm just pissed off at the doc and I'm venting......
Good side? I can spell it. Other good side? There are enough patients that most doctors have seen other patients.
Saturday, September 23, 2006
I'm sorry.
Look, I'm not here to condemn any of you. I just wanna educate you a little. I know very few of us are trained in the right way to deal with a friend saying "I'm gonna die soon."
Most people say, "I'm sorry."
What the hell are you sorry for? I mean, you didn't do anything, so why apologize? You didn't give it to me, did you?
So here are my suggestions for dealing with the imminent demise of a friend, coworker, man on the street.
1) Be GLAD it's not you. Just don't say it.
2) Appreciate that the news can be life-changing for the victim. Ask how they're holding up emotionally.
3) Recognize that the victim is often worried about his family or a loved one, far beyond his concern for himself.
4) Offer your emotional and spritual support any time they need it.
5) Offer to talk to their spouse, S.O., or kids if needed.
6) Help them with preparations if you're close enough..... these are things families sometimes don't address even in times of inevitability.
7) Recognize that this could happen to anyone at any age. So get right with your family, your friends, and your faith. Do the paperwork and make the hard decisions now. It's not right for you to dump it on the people who are missing you.
Just don't say "I'm sorry."
Most people say, "I'm sorry."
What the hell are you sorry for? I mean, you didn't do anything, so why apologize? You didn't give it to me, did you?
So here are my suggestions for dealing with the imminent demise of a friend, coworker, man on the street.
1) Be GLAD it's not you. Just don't say it.
2) Appreciate that the news can be life-changing for the victim. Ask how they're holding up emotionally.
3) Recognize that the victim is often worried about his family or a loved one, far beyond his concern for himself.
4) Offer your emotional and spritual support any time they need it.
5) Offer to talk to their spouse, S.O., or kids if needed.
6) Help them with preparations if you're close enough..... these are things families sometimes don't address even in times of inevitability.
7) Recognize that this could happen to anyone at any age. So get right with your family, your friends, and your faith. Do the paperwork and make the hard decisions now. It's not right for you to dump it on the people who are missing you.
Just don't say "I'm sorry."
UPDATE
Ok, here's the update. Looks like I have Waldenstrom's Macroglobulinemia, not Multiple Myeloma. They're closely related, but one is more rare than the other.
Well, in my usual inimitable style, I chose the rare one. Exclusivity has value! NOT!
According to the websites, only about 1500 people per year are diagnosed with Waldenstrom's. Unfortunately, this means that very very few oncologists have ever seen a case in front of them. What's that mean? It means I'm lucky enough to have more scientific mindpower researching this matter, between Ed and our friend Pam, than the hospital chain I'm visiting.
Anyway, the prognosis doesn't look good, and everything we read on the web is tainted by people trained to put a positive spin on the worst possible news.
As an example..... the doc says "patients live for years". Yeah, statistically they might, because this disease is generally discovered after the patient is 65, and when the patient is asymptomatic.... Therefore, he can live 8-12 years before the first of the big 7 symptoms appear.
Meanwhile, mine was discovered at 51 after I suffered thru 6 of the big 7 symptoms. What's that mean? Hell, nobody knows...... nobody's ever seen anyone with 6 of 7 walking around and going to the office every day.
So, keep an eye out on here. Keeping up with my progress will make you just as experienced and just as savvy as most doctors. ;-)
Just because I'm sick, doesn't mean I stopped being a wise-ass.
Well, in my usual inimitable style, I chose the rare one. Exclusivity has value! NOT!
According to the websites, only about 1500 people per year are diagnosed with Waldenstrom's. Unfortunately, this means that very very few oncologists have ever seen a case in front of them. What's that mean? It means I'm lucky enough to have more scientific mindpower researching this matter, between Ed and our friend Pam, than the hospital chain I'm visiting.
Anyway, the prognosis doesn't look good, and everything we read on the web is tainted by people trained to put a positive spin on the worst possible news.
As an example..... the doc says "patients live for years". Yeah, statistically they might, because this disease is generally discovered after the patient is 65, and when the patient is asymptomatic.... Therefore, he can live 8-12 years before the first of the big 7 symptoms appear.
Meanwhile, mine was discovered at 51 after I suffered thru 6 of the big 7 symptoms. What's that mean? Hell, nobody knows...... nobody's ever seen anyone with 6 of 7 walking around and going to the office every day.
So, keep an eye out on here. Keeping up with my progress will make you just as experienced and just as savvy as most doctors. ;-)
Just because I'm sick, doesn't mean I stopped being a wise-ass.
Sunday, September 17, 2006
OK, here's the deal with a little history.
In November of 2005, Ed and I moved to Seattle. Both of us had new jobs here and we fell into a life of work, play, and home renovation that we both enjoyed. Life was good.
Almost a year ago, I started noticing that my endurance was starting to wane. I was far from becoming a couch potato or a keyboard jockey.... in fact, the neighbors still thought I was the hardest working human on the block.... but I knew something was wrong. I had no real stamina, my pulse would rise if I did anything strenuous for very long, and in general, I just felt "off".
I actually suspected that I had a blocked artery and/or some sort of cardio-pulmonary disease. I could exhaust myself to the point that I could sense myself almost blacking-out...... simply not enough blood and oxygen to the brain. Slightly elevated cholesterol, 20 years of smoking 3 packs a day (quit 10+ years ago), and my 50 years on the planet made me think down a common path....... blocked arteries.... maybe I'd need a bypass in a few years.
Then about 6 months ago, things started to slide downhill rapidly, but I didn't recognize the change as anything drastic. Basically I just became unmotivated, lethargic, and unconcerned with the things that went on around me. I blamed most of this on my job...... I hated (HATED) working for Hologic and it showed in my attitude and my actions. Bingo, one thing follows the other, and my hatred of the job spread into apathy about home renovation and many other aspects of my life.
All this time, I was a bear to live with. I was grouchy, unhappy, and negative..... and I expressed myself often. Not a good thing. Thankfully Ed is a saint.
So Ed and I bought a boat. It was originally supposed to give us an activity to do together.....the boat always made Ed smile..... and we had fun when we were out on the water. But toward the end of one of our days on Lake Washington, I tripped over something on the deck and fell against the console with my ribcage. It hurt and I still believe I cracked a rib or two...... Believe it or not, it was a blessing.
The injured area tended to cramp spontaneously. It was a charley-horse type of cramp that was amazingly painful.... I saw a doctor about it and he determined that I'd bruised a nerve bundle, but that it would go away soon. He warned me not to tape my ribs up (to prevent pain) because the taping can actually cause pneumonia due to the accumulation of fluid.
So I didn't tape up, but the pain required that I sleep on one side of my chest and not breathe very deeply. I believe this brought on a case of bronchitis that ultimately raised the flag I'm sailing under now.
Ok, so the bronchitis started it's standard march for me..... lungs, then throat, then a slight nasal infection.... and usually, this would be the end of it.... One week of feeling lousy, but predictable and easily overcome.
But there was a twist. The creeping crud never left my nose. I was strapped with bloody noses, enormous discharges, and my endurance was measured in minutes, not hours.
I'd been to Urgent Care on two successive weekends for the bronchial part of this... and finally after a research call in Everett, I wandered back into Urgent Care on a pleasant Friday afternoon. I felt like absolute dog shit...... I hurt, I had no energy, and I was really tired of feeling bad.
Urgent Care took a blood test and documented my complaints.... a few minutes later they advised me I was going to Virginia Mason Hospital by ambulance. No, I couldn't drive myself. No, Ed couldn't drive me. I was going to travel with an EMT staff "just because".
It seems I was anemic. Anemic like "you shouldn't be standing here", "are you sure you're not dizzy?", and "Oh my god, you need to sit down" anemic. So I looked at the numbers..... and sure as hell, I only had enough blood in me to run the average 8 year old. The numbers were scary.
No wonder the doctor said I'd be getting a transfusion once I arrived.
Ok, so over the next three days, I got 4 units of blood. The blood made me feel better, but the 4 units only brought my blood counts half-way to the bottom of normal. I got a ton of blood tests done and I ate at the whim of the doctors...... here's the tally of tests.
A 5 vial blood draw every 8 hours for 3 days.
2 X-rays
One camera down my throat.
One camera up my ass.
2 CTs. One with barium contrast and the other with injected contrast.
One Ultrasound.
From all this, they determined that I had an enlarged spleen and that I could go home until the rest of the blood work came back. I was still in pain, but they gave me a scrip to alleviate the misery. While I was in the hospital, I could have morphine every two hours... now I'm stuck with 2 Vicodin every 4 hours. Whatever. (The enlarged spleen is the cause of the pain, and the enlargement is caused by the spleen over-working to help clear my blood of bad blood cells.)
So I went home and made an appointment to see my PCP ASAP that week. I saw him at about 2:30 pm on Wednesday, September 13.
His response was simple and to-the-point. "Looks like multiple myeloma." It's a cancer of the bone marrow that causes the marrow to produce some red blood cells and a an uncontrolled number of one specific type of white blood cells. Normally, the marrow produces a spectrum of different white blood cells that help fight infection... but in my case, only one type is being produced in unlimited quantities, somewhat at the expense of red blood cells.
So what does that really mean? One, my body won't be able to fight infection very well. Two, I'll have a tendency toward "hypercalcemia" because my bones will be dissolving into my bloodstream. And three, I'm going to have one hell of a roller coaster ride thru the next 12 to 18 months.
For what it's worth, multiple myeloma isn't curable. Without treatment, the prognosis is for me to die within a year. However, there is a rather drastic treatment that can force the cancer into remission for an indefinite period of time.
A series of Mengele-esque steps can be used to acquire "good" stem cells from my bone marrow. Then chemotherapy and radiation therapy can be used to kill all the bone marrow in my body. Then there's more Mengele-esque procedures to get the stem cells back into my bones. At the end of this macabre chain of events, we can HOPE that the stem cells all produce good blood cells and that everything will remain in remission for "a while". Nobody has a clue how long that might be.
Anyway, I'll be keeping people posted thru this site. Good, bad, indifferent, or merely introspection.... it'll be here.
Almost a year ago, I started noticing that my endurance was starting to wane. I was far from becoming a couch potato or a keyboard jockey.... in fact, the neighbors still thought I was the hardest working human on the block.... but I knew something was wrong. I had no real stamina, my pulse would rise if I did anything strenuous for very long, and in general, I just felt "off".
I actually suspected that I had a blocked artery and/or some sort of cardio-pulmonary disease. I could exhaust myself to the point that I could sense myself almost blacking-out...... simply not enough blood and oxygen to the brain. Slightly elevated cholesterol, 20 years of smoking 3 packs a day (quit 10+ years ago), and my 50 years on the planet made me think down a common path....... blocked arteries.... maybe I'd need a bypass in a few years.
Then about 6 months ago, things started to slide downhill rapidly, but I didn't recognize the change as anything drastic. Basically I just became unmotivated, lethargic, and unconcerned with the things that went on around me. I blamed most of this on my job...... I hated (HATED) working for Hologic and it showed in my attitude and my actions. Bingo, one thing follows the other, and my hatred of the job spread into apathy about home renovation and many other aspects of my life.
All this time, I was a bear to live with. I was grouchy, unhappy, and negative..... and I expressed myself often. Not a good thing. Thankfully Ed is a saint.
So Ed and I bought a boat. It was originally supposed to give us an activity to do together.....the boat always made Ed smile..... and we had fun when we were out on the water. But toward the end of one of our days on Lake Washington, I tripped over something on the deck and fell against the console with my ribcage. It hurt and I still believe I cracked a rib or two...... Believe it or not, it was a blessing.
The injured area tended to cramp spontaneously. It was a charley-horse type of cramp that was amazingly painful.... I saw a doctor about it and he determined that I'd bruised a nerve bundle, but that it would go away soon. He warned me not to tape my ribs up (to prevent pain) because the taping can actually cause pneumonia due to the accumulation of fluid.
So I didn't tape up, but the pain required that I sleep on one side of my chest and not breathe very deeply. I believe this brought on a case of bronchitis that ultimately raised the flag I'm sailing under now.
Ok, so the bronchitis started it's standard march for me..... lungs, then throat, then a slight nasal infection.... and usually, this would be the end of it.... One week of feeling lousy, but predictable and easily overcome.
But there was a twist. The creeping crud never left my nose. I was strapped with bloody noses, enormous discharges, and my endurance was measured in minutes, not hours.
I'd been to Urgent Care on two successive weekends for the bronchial part of this... and finally after a research call in Everett, I wandered back into Urgent Care on a pleasant Friday afternoon. I felt like absolute dog shit...... I hurt, I had no energy, and I was really tired of feeling bad.
Urgent Care took a blood test and documented my complaints.... a few minutes later they advised me I was going to Virginia Mason Hospital by ambulance. No, I couldn't drive myself. No, Ed couldn't drive me. I was going to travel with an EMT staff "just because".
It seems I was anemic. Anemic like "you shouldn't be standing here", "are you sure you're not dizzy?", and "Oh my god, you need to sit down" anemic. So I looked at the numbers..... and sure as hell, I only had enough blood in me to run the average 8 year old. The numbers were scary.
No wonder the doctor said I'd be getting a transfusion once I arrived.
Ok, so over the next three days, I got 4 units of blood. The blood made me feel better, but the 4 units only brought my blood counts half-way to the bottom of normal. I got a ton of blood tests done and I ate at the whim of the doctors...... here's the tally of tests.
A 5 vial blood draw every 8 hours for 3 days.
2 X-rays
One camera down my throat.
One camera up my ass.
2 CTs. One with barium contrast and the other with injected contrast.
One Ultrasound.
From all this, they determined that I had an enlarged spleen and that I could go home until the rest of the blood work came back. I was still in pain, but they gave me a scrip to alleviate the misery. While I was in the hospital, I could have morphine every two hours... now I'm stuck with 2 Vicodin every 4 hours. Whatever. (The enlarged spleen is the cause of the pain, and the enlargement is caused by the spleen over-working to help clear my blood of bad blood cells.)
So I went home and made an appointment to see my PCP ASAP that week. I saw him at about 2:30 pm on Wednesday, September 13.
His response was simple and to-the-point. "Looks like multiple myeloma." It's a cancer of the bone marrow that causes the marrow to produce some red blood cells and a an uncontrolled number of one specific type of white blood cells. Normally, the marrow produces a spectrum of different white blood cells that help fight infection... but in my case, only one type is being produced in unlimited quantities, somewhat at the expense of red blood cells.
So what does that really mean? One, my body won't be able to fight infection very well. Two, I'll have a tendency toward "hypercalcemia" because my bones will be dissolving into my bloodstream. And three, I'm going to have one hell of a roller coaster ride thru the next 12 to 18 months.
For what it's worth, multiple myeloma isn't curable. Without treatment, the prognosis is for me to die within a year. However, there is a rather drastic treatment that can force the cancer into remission for an indefinite period of time.
A series of Mengele-esque steps can be used to acquire "good" stem cells from my bone marrow. Then chemotherapy and radiation therapy can be used to kill all the bone marrow in my body. Then there's more Mengele-esque procedures to get the stem cells back into my bones. At the end of this macabre chain of events, we can HOPE that the stem cells all produce good blood cells and that everything will remain in remission for "a while". Nobody has a clue how long that might be.
Anyway, I'll be keeping people posted thru this site. Good, bad, indifferent, or merely introspection.... it'll be here.
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