Wednesday, January 31, 2007

Free at last! Free at last!

Tomorrow morning I can get out of bed and not take any pills! For now, I'm as healthy as I can be.

The only thing my oncologist and I really discussed were:

1) Options for getting the monkey off my back.
2) Options if the numbers start to creep back up.
3) Options if the numbers continue to slide down.
4) Options if the numbers stay where they are.

As far as number one, it was suggested that I take some steroids again so I could taper off gradually and not feel so incredibly horrible. That didn't make much sense to me since it's already been about 9 days and I feel slightly better each day. I have a choke-hold on the monkey and his little eyes are starting to stare blankly into space...... the little bastard is almost unconscious.......and if I keep a good grip for a while, he'll be dead. No sense in reviving him so I can kill him in a more humane manner. The monkey must die. Now.

Two thru four all have the same outcome. My numbers are good enough for a stem cell harvest. If they slide downward, we'll harvest. If they go up slightly, we'll harvest. If they stay the same, guess what? We'll harvest.

Harvest? Basically they put a "port" (keg tap) in me. Then they fill me full of "growth factors" (grapes and yeast) and when the numbers hit a certain level, they put me in the "hospital" (wine cellar) and tap the keg.

Out comes Chateau Andre, 2007. It's a hearty Burgundy full of natural stem cells inherent to the original 1955 vintage from the chateau.

The objective is to get three or four transplants out of a single harvest. What will we do with them? Freeze them for later if I need them.

Need them? If the disease starts to go crazy, we can chemo/nuke my bone marrow into oblivion and then "fill er up" with one of the freezer bags..... during which I get to sit like The Boy in the Bubble for 6 weeks.

But clinical trails move along rapidly. There's no guarantee I'll have to go thru any of this. If I'd had this disease 2 years ago, my treatment would have been harder and longer. Thank goodness for research.

For now, color me drug free. Now that I'll be feeling more normal, expect me to document the changes and return from the valley of the shadow.......

Tuesday, January 30, 2007

Click your heels three times.

These last two weeks have been HELL...... The final crash has been horrendous and I still feel like crapola. I mean BAD. I'm still walking around with testicular pain and general crumminess.

I go to the oncologist tomorrow. We're gonna fight a bit. I really CANNOT continue to do what we've been doing. Can't.

Numbers look good. I just need to get him to set me free. Will advise.

Wednesday, January 17, 2007

Jeepers golly.

I'm SO tired of writing about pain and misery. Unfortunately, that's life right now. Catfishing again, bottom of the lake. Feeling like crap and being beaten up at the office...... critical delivery time for a system and everyone is stressed..... including me.

I'll get thru it. I promise.

Monday, January 15, 2007

Treading water.

Nothing much new here. Same old stuff. Just dealing with the steroids and hoping to goodness I can stop soon. Only 8 more days until it might be over.

Off the 'roids for 4 days (starting today), then on again for 4 more, then down for 8 until the next oncology meeting with a full blood series.

Ed and I decided we're gonna quit treading water and start swimming thru life again. As a result, we've actually been doing STUFF like real humans. It's an interesting change and it's been educational. I get tired quickly, but every day seems to extend my ability to last. I guess that's all part of the swimming lesson. L'chaim!

Monday, January 08, 2007

Death - what a relief!

Now don't get me wrong. I'm not suicidal or anything. I'm merely examining a perspective.

Ed and I just watched a special on the 1918 influenza pandemic and something occurred to me. When I was SO sick, it would have been quite easy and probably painless to die.

Think about it. Most of us have been sick.... very sick.... at some point in our lives. We've been sick enough to have lost track of time... to have slept for hours. To wander in and out of consciousness.

I know for a fact that I've been unconscious immediately after motorcycle accidents....

So the question is: If you're already unconscious, is it so hard to die? It's just a question.

Thursday, January 04, 2007


I'm going to try to explain the power of Dexamethasone (Dex). Dex is the steroid I take as chemotherapy. Since it's my only current medication, it's pretty easy to identify its powers. It's amazing stuff.

Here's the scenario. During the last 4 days of my very recent 8 day downtime, I contracted some sort of upper respiratory crud. One of the girls in the office was among the walking sickies and I appear to have caught what she got from her kid. Regardless of what it was called, she felt yucky.

So, I catfished for 4 days and then had a cold for the next four catfish days. Yucky doesn't quite describe it. Respiratory problems with all kinds of crud coming out of my nose and mouth, bone pain, muscle pain, a fever of 100 F, gastric distress, severe testicular pain, muscle cramps in my legs and hands - probably 100 cramps a day (no exaggeration), certainly exhaustion. January 1 was spent completely in bed.

On Monday the 2nd I called in sick. I just couldn't do it. I needed rest but I had the oncologist appointment that afternoon and I was supposed to pick up the refill for my Dex.

I got the Dex at about 2 pm and decided to cheat. I took 2 Dex about 14 hours early.

By the time I saw the doc at 3:30 I felt 100% perfectly normal. No illness, no pain, no nothing. After talking about my numbers, I was probably slightly manic.

By bedtime, I had more energy than I needed. I almost started a project in the garage.

By 1 am I was envisioning ways to kill another guy with my bare hands. (Two of you will remember things.)

By 3 am I forced myself to sleep. At 5:30 the alarm went off and I arrived at the office as fresh as a daisy and with a song in my heart.

Of course, at 6 am I'd had breakfast and EIGHT more Dex as prescribed. See, I take 10 a day when I'm "on". Yeah, TEN. Think about it. Two has the power to turn a man from bat-shit into Batman. Ten causes a person to change planes of existence.

I exist in that altered state for 4 days at a time. Then I'm forced back through untold dimensions (or dementia?) to pay the bill for rampant excesses, both physical and mental. No wonder my second day down always feels like I played tackle football all day, crashed a racebike, and then lost a barfight.

And just about the time my body starts to heal from the barfight, its time for another round of Dex. Right up there, boyo! Slingshot recovery! No pain, all gain! Welcome to 'roid junkie heaven!

According to the doc, I'm on my last "maximum strength" round of Dex. If the numbers stay good and I'm given the stamp of remission, I go on a maintenance dose that's probably as low as 4 days per month instead of roughly 4 days a week. I don't really know how I'm going to like that.

See, if I could give up the Dex completely, then the monkey might not get a good grip on my back (and he's a hard little bugger to fight). But if I'm supposed to babysit the monkey once a month........

Tuesday, January 02, 2007

A visit to the Oncologist

Ed and I went to the oncologist together today. It was an interesting meeting.

First, he said he'd never seen anyone's numbers change so rapidly. That was encouraging and I'm happy to be his personal freak of nature.

Second, he indicated that this cycle of steroids will be my last "full strength" round of chemo.

Third, he suggested I'd need to taper off the steroids in February so I could exist on a maintenance level. (We had previously discussed my dependence on them.)

Fourth, we talked about harvesting stem cells for the possibility of an eventual transplant at an unknown date that may be "never".

Fifth, he almost used a word that starts with R.... but he wasn't really ready to say it and I'm not really ready to tell you what it is.

In conclusion: Four months. It ONLY took four months. Who knew?