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.)

Documenting the downhill, part 2

Day two of the 8 day crash. Feeling like crap. Flu-like symptoms. Tylenol is my friend.

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.

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.)

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.

Junkie

I get to go back on the 'roids again tomorrow. I'm SO STOKED! Yeah, I'm a 'roid junkie now.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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?

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.

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.