MDS: Pain of the Day

Well now, in addition to the Weekly Blood Count, it seems we have a new phenomenon going on: the Daily Pain.

A mystery pain showed up in my right hand two nights ago. It wasn't there at dinner. It was there when I climbed into bed. Nothing eventful had happened between time.

A kind of pulsing pain, it was.

• Back of the hand.
• A bit dull.
• Not a throb.
• A slow build up to a pulse.
• Pulse, pulse.
• Then fade.
• And gone.

What the . . .?

This hand pain stuck around for the next day, then disappeared as quickly and mysteriously as it had arrived.

To be replaced by an aching pain in the left knee.

Which made its presence known all day yesterday.

But, this morning on the treadmill, it, too, was gone.

The immediate reaction, as has been the case since MDS Day 1, is— huh, another medication side effect? Does one of these drugs cause joint problems? Ligament or tendon deterioration? Smoker's lung?

No matter if any of that's true, once again the situation has caused teeny-tiny paranoid thoughts to creep in.

By the way, did I mention that I'm positive my hair is starting to fall out? That my lungs are compromised? That my brain is addling? That my ears are clogging? That my SAT scores are going down?

Paranoid? Who me? Whaddaya kidding? Never heard of such a thing. Pass the Valium, please.

MDS: No Naps in Sight

Five days without a nap. Is that kind of like going five days in the desert without water?

Don't think so.

But, it feels like it.

Not that any serious physical exercise has been included in those days. Just

• 2 days of driving
• 2 days of playing ski journalist in Boston at the Boston Ski Show
• 9 holes of golf
• 1 day of sitting in the semi-cold at Giants Stadium (at least the Giants won)
  

Really. How strenuous should that be?

Well, how it should be and how it is are two different things, and I'm facing this Monday morning with cobwebs in my eyes, between my ears and probably in other places.

And, I can't go back to sleep. Actual deadlines must be met.

Oh well. Dr. O never said I should show up for blood counts this week, so maybe I'll play it irresponsibly and not call to find out if she meant it. That'll buy me an extra 90 minutes to nap today and tomorrow.

After that it'll be Thanksgiving and she won't be there. Ha!

Night, night.

MDS: Surviving Another Week

Another week-plus of needles have passed.

I'm still standing.

Well, actually, I've been lying down most of the time, but metaphorically the standing bit still holds.

The blood counts continue to amaze and confuse. Yesterday:

• Platelets: 142,000
• Hemoglobin: 12.3

Why they continue to be this high, even during shots, means one of two things (or a combination of both):

• the Vidaza is working
• I'm really good at MDS.

Nice to be good at something.

Meanwhile, the effectiveness of the new medication added to the drug "cocktail"—Vidaza, Zofran, Depatoke—is hard to assess. The leg splotches look like they're fading a bit, but that could just be wishful thinking; seeing what I want to see.

We'll see.

MDS: A Pattern Develops

Here in the 7th month of the Great Vidaza Experiment, a Shots Week pattern is emerging. It goes something like this:

• Monday - feel okay
• Tuesday - not so good; tired, bad stomach
• Wednesday - downright lousy; gas wars in progress
• Thursday - much better, thank you; peace abdominal
• Friday - soooo tired
• Saturday - just le me rest
• Sunday - alright, so-so
• Monday - not so good, again
• Tuesday - getting better all the time

This is simultaneously reassuring and exasperating.

Nice to know it's coming. Frustrating as hell to know that there's bupkus you can do to stop it.

Thursdays are particularly deceptive. For some reason, the stomach ache/gas pains disappear on Thursday, and the energy gets a bit of a boost.

The boost must be from not needing to waste energy groaning and moaning about the stomach. Because from Friday on, the stomach remains okay, but the energy disappears.

So, here it is, Saturday, and a long day of listlessness looms ahead of me. Amphetamines anyone?

MDS: Good Blood Counts Battle Bad Stomach

Ah, yes. The good news/bad news scenario continues.

The Good

Monday's blood counts (which I forgot to ask about on Monday):

• Hemoglobin: 21.1
• Platelets: 172,000

This is a bit startling, actually. The platelets have never been that high. Not even before all this nonsense began, when I was ostensibly a healthy boy.

And, since we waited this time an extra week between Vidaza treatments, I'm wondering if an extra week wouldn't always be a good thing. Perhaps there's an interval "tipping point" after which the counts begin to descend. Logical question on that one would be, what is that tipping point? Five weeks? Six? Ten to twelve years?

Mr. Science, here, realizes that only trial-and-error can answer that question. But, first, I'll have to ask it.

The Not-So-Good

The meds combo is wrecking havoc with the digestive tract.

• Shooting gas pains are firing there as if there's WWI trench-style warfare taking place.
• The region is bloating like a zeppelin is being inflated in the belly.
• And, gas is shooting out the back like an Atlas rocket at ignition and lift off.

Good thing I'm home alone this week.

Under normal circumstances, continuing this good/bad scenario continues, would raise fears in me that I'd drift into some schizoid state. Luckily, one of those battling battalions of pharmaceuticals (Depatoke) is designed to prevent just such a personality split.

Guess I'm safe from that consequence.

But, pity the fool who wanders within smelling distance of that Atlas launch pad.

MDS: Drug Interaction Dilemma - What to Do, What to Do?

Two side effects of Vidaza (primary treatment for MDS) are vomiting and the lesions formed on my legs.

A side effect of Zofran (anti-nausea to counteract the Vidaza vomiting) is constipation.

A reported side effect of Depatoke (anti-convulsive being used to heal the leg lesions) is diarrhea.

To counteract the Zofran-induced constipation, I'm consuming three Metamucil capsules, three times a day during Shots Week. (That's 4.33 times the normal two per day). To date this Metamucil regimen has prevented the need to ingest a laxative.

But, wait.

• If Depatoke, which I began swallowing yesterday, causes diarrhea, will it alone counteract the Zofran constipatory effect?
• If so, do I reduce the Metamucil for fear that a two-drugs-against-one struggle might result in a major, unsettling digestive system battle?
• Do I maintain the Metamucil for fear that the Depatoke won't counterbalance the Zofran?
• Do I call Mr. Wizard for advice? (Google search him, you young 'uns.)

Oh my.

Yesterday's results proved inconclusive. By late afternoon, my belly was complaining of pains and gassiness, but no more, really, than normal for Shots Week.

This morning, all appears to be moving along nicely.

I was never a science student, but even I know that obtaining good experiment results requires limiting the variables. Still, I don't want to pay the consequences of bad results either way.

These are the health maintenance questions that try men's souls. And, potentially, their toilet paper supplies.

Call it a lifestyle.

MDS: Back on the Bike

When your wife's away, your football team is tanking, the weatherman has provided cloudless skies and 72 degrees in November, and you're facing a new Shots Week (SW) with bonus medication, there's only one thing to do.

Get on your bike and ride.

Which is what I did yesterday. Traveled down to my pal Martin's place, which is located just a few paces from the Delaware Canal Bike Path. We pedaled north to Lambertville and continued on to Stockton.

After a sandwich from the Stockton Store, devoured alfresco by the path, we pedaled back. 27.5 miles, 3.5 hours cycling in total, according to Martin's handlebar computer.

Sure, it was all flat going. But, believe me, legs are tired, and my butt is sore.

Still, that's a small price to pay for getting my mind off the upcoming SW and addition of Depatoke to the mix.

I mean, have you read the possible side effects of this drug? Liver damage, pancreatitis, vomiting, severe drowsiness—the list goes on.

I know, I know, you're not supposed to take these lists too seriously. As the daughter consistently reminds, if just one person in the trials has a reaction of some kind, it must be reported.

But, please. Sometimes this situation feels like we're suffering a health version of piling on after the whistle has blown.

C' mon ref—get 'em off me! I've already got a sore butt!

MDS: Flying with the Flu

My friend/colleague Charlie Leocha just posted a piece on the blog ConsumerTraveler.com noting that

• In a poll completed last week by the Consumer Travel Alliance (CTA), almost 73 percent of passengers said they would fly even if they had the flu. More than half of those would fly because either change fees were too high or it was "to late" to make changes vacation plans.

It goes on to say

• This is not the only survey that shows passengers will fly with the flu — another survey of thousands of travelers conducted by TripAdvisor showed that more than half of passengers would fly with the flu. [Based on 2,327 responders.]

You can read the entire blog here.

Okay—CTA is an organization that Charlie helped organize and to operate. So, he’s not citing some outside authority. And, his blog entry doesn’t say how many people responded to the CTA survey.

Still, this is scary.

As if I’m not paranoid enough about riding on airplanes (got back-to-back long haul trips planned for the first half of January), now this has been added to my menu of fears.

Charlie faults the airlines for not mitigating things with easier re-booking rules and penalty fees.

Good enough, as far as that goes. I’m no fan of the airlines.

But, what about the people themselves? Don’t we owe it to others to confine ourselves when we’re sick? Where’s the sense of responsibility?

Guess I’ll get me one of those medical isolation bubbles to use while in flight. (Remember "Bubble Boy" from Seinfeld?)

That’ll show ‘em.

The Report on Leg Red Spots

Yesterday there was good news and disappointing news relative to the bizarre spots on my legs.

Review: In two places, the small red spots have expanded into something that looks like raised bruises. A biopsy was done on the largest one (right shin) by Dr. Skin a few weeks ago.

The biopsy results proved puzzling. The presence of leukemic cells was indicated.

I presented the report to Dr. O on Monday. She, too, was puzzled. A confab with Dr. MDS was in order, she decided. She reported that confab's conclusions by phone yesterday.

The good news:

• Dr. MDS has seen these "lesions," as they are now being called, before.
• They are a reaction to Vidaza.
• They can be treated with Depakote (valpoic acid).
• The presence of leukemic cells does not indicate that the MDS is devolving into leukemia.

Whew.

The disappointing news:

• The 7-day shots cycle must continue.

Okay. I'm bumming about the seven days. I'd been psyched about reducing the cycle to five days, which I figure would reduce my feel-lousy time by at least two if not three days.

I'm also a bit leery of this Depakote. Sure, I trust Dr. MDS when he says it works to eliminate the Vidaza-related lesions. But, hold on, Depakote is an anti-convulsive also used in the treatment of bi-polar disorder.

Whoa! Are we ready for some schizophrenia!?! (As if the football Giants don't make me schizo enough.)

Alright, alright—just I'm kidding. I understand that drugs often successfully treat problems other than those designated for their primary use. Still, yet another drug to combine with those already being ingested (Vidaza, Zofran, plus a couple of  digestive supplements) bugs me. My brain still categorizes me as a young, healthy person.

Guess we're going to have to adjust that.

Anyway, Daughter reassured me about the frequent off-use of meds, and that an anti-convulsive doesn't mean inducing convulsions (hey—I knew that). And, she expressed cautious optimism about the bi-polar aspect.

"Might do you some good," she said.

Wait til I tell the rest of my personalities about that.

MDS: Vidaza Postponed

Dr. O threw me a curve ball yesterday. Maybe it was more like a change-up, where the ball comes in so slowly that you swing so early and so hard that you almost fall over.

She postponed the Vidaza shots til next week.

You'd think this would make me happy. But, no. It just threw me off balance.

I'd been busy Sunday evening indulging myself in some pre-shots misery—you know, "Oh woe is me; in 48 hours I'm going to feel like crap"—and by yesterday morning I'd built up my resolution to once more sink into discomfort.

Plus, I'd kind of psyched myself up for the grand 5-shots sequence experiment, which will begin with the next series.

And, worse, I'd called last Thursday to confirm we were doing shots this week. We were, I was told.

So, I swallowed my Zofran pill, and drove to Dr. O's office. But, when I got there, she asked if it would be okay to do shots next week. She was going to be in NYC, you see, a few days this week.

Well, at least she asked, rather than announcing.

"We'll just check your blood today," she said.

Good news there:

• Platelets: 156,000
• Hemoglobin: 12.1

Still, I'm all aflutter. I'd made myself ready to be useless, and I'd taken the Zofran for nothing.

Now, here I am with my bowels semi-clogged from the Zofran, but the rest of me perfectly functional.

I mean, really.

I've lost my excuse for doing nothing this week.

Guess I'll just have to do something.