MDS: How Old Are You?

Age is adding to the MDS uncertainty. Apparently I’m either too young or too old—a classic borderline case.

"If you were eight or ten years younger," says Dr. Onco, "I’d recommend a bone marrow transplant right away."

"If you were eight or ten years older," says Dr. MDS, "you’d likely be too old to consider a bone marrow transplant other than as a last resort."

At (nearly) age 61, I reside in Never-Never Land.

"We’ll just have to wait and see," agree both Dr. Onco and Dr. MDS.

Does the fact that I still think of myself as being 25 carry any weight?

Apparently not.

MDS: Shocking

Here’s the downside to being told your blood counts are near-normal. Periodically I’ll be floating along, doing whatever it is I’m doing, thinking of things to do, places to go or people to see in the distant future, and I’ll suddenly remember:

I could be dead from this in 3.5 years.

That’s the MDS median survival longevity.

Of course, I fully realize that that number includes many people. Those who

• were diagnosed before Vidaza came along
• have a more advanced stage of the disease
• have other issues that complicate matters
• are much older than I.

Still, like touching metal in mid-winter dry air, the sudden cognizance of potential short mortality sends a static electricity-like shock through my psyche.

Better get going, I remind myself. No more lollygagging. No more procrastinating. No more putting off til tomorrow.

Then I go straight for a nap.

Yesterday’s Counts: Normalcy Returns?

Dr. Onco pricked my finger to satisfy her blood lust yesterday and came back with these numbers:

• Platelets: 161,000
• Hemoglobin: 12.4

That’s very close to normal.

"If the Vidaza isn’t supposed to take effect until the third or fourth course of injections, why," I asked, "are the counts going up so quickly?"

"I don’t know," she said. "And, as long as they’re going up, I don’t care. It doesn’t matter why as long as they’re going up."

Okay by me.

MDS: Reality Check

Tuesday's visit to the MDS specialist has brought me back to earth. With a thud, I fear.

Seems that I'd lost my grounding somewhere along the way. Seems I'd convinced myself that current treatments could arrest this syndrome sufficiently to allow treatments to be suspended; that once the platelet count reached normal (or something resembling that), I'd be stabilized and would need only monitoring.

Call it denial. Call it self-deception. Call it what you will. Just don't call me late for dinner?

What we learned from Dr. MDS—or re-learned, really, as we knew this already but had let the knowledge lapse—was this:

• Vidaza is forever
• life expectancies on Vidaza are basically undefined
• the drug will likely stop being effective at some point
• when efficacy fails, a bone marrow transfusion is required
• there is no cure except bone marrow transplant
• transplant success rate is 60%—at my current age and disease stage
• transplant mortality rate is 15%
• those percentages decrease and rise significantly with advancing age and stages of the syndrome
• transplants cost $1 million
• the cost is covered by our insurance, but...Medicare currently doesn't recognize MDS as qualifying for transplant coverage...so, if we wait long enough, that might be an issue

I'm back to feeling very mortal.

Dr. MDS did say we're following the correct course for now. He also said there are three drugs "in the pipeline" that might well augment Vidaza's effectiveness.

Encouraging, too, are the fact that Vidaza

• hasn't been on the market long enough to show statistically significant data for long-term results
• was trial tested only on patients with in Stages 3 and 4 of the disease; I'm classified as Stage 2 (and a relatively low Stage 2, at that)
• showed in trials an average increase in life span of 50-75%

As Dr. Primary Care said yesterday, "Basically, you're in uncharted territory."

Is this the way Hudson felt when he steered his boat upriver from Manhattan looking for an inland passage? (Or was he actually looking, like so many NYC visitors, for a place to park?) Did Lewis & Clark share my uncertainty?

It's taken a day to recover from being hurled back to earth by these renewed revelations.

But, as long as the platelet count continues to rise, and as long as I continue to gain energy, I guess there's little choice but to unfurl the sails, load the wagons, saddle the horses, and follow the great explorers' footsteps into this uncharted land.

A map? A map? My kingdom for a map? Or, maybe a GPS?

MDS: A Doctoring We Will Go

Today, armed with a list of questions long enough to challenge the Manhattan phone book for length, Penny and I are off to see the MDS specialist. Penny must come along because most information imparted to me these days seems to take the express route in one ear and out the other.

Penny will bring a notebook and take notes. I'll just nod my head a lot.

It's somehow odd to think that there are specialists handing disorders that just three months ago I'd never heard of. Don't get me wrong. I'm glad these people are out there. I just wish I didn't have to be their patient.

Tomorrow, a visit to the primary care doc is the featured event. Thursday, it's the oncologist. Friday, just for a change of pace, it's the car doctor.

Not to worry—there's nothing wrong with the automobile. Just an oil change and other routine stuff.

Still, one wonders at the amount of time spent doctoring.

Next week it's back to daily injections. At some point, there's a dental crown that needs re-cementing. I also need new glasses.

But, hey, a boy must draw the line somewhere. Even if the boy can't see the line too well because the optometrist functions on the other side of that line.

Big Belly MDS Man

I’ve reached a stage where I forget that I’m ill.

Wait. Are you "ill" if you’re suffering from a syndrome? Or, are you sydronomous? Or, something else?

Maybe that’s why I don’t feel ill. Maybe I’m not.

But, then, rude reminders unveil themselves like so many snakes hidden in the grass. Like when I try to run. Hell, forget running; when I try to jog. Can’t be done.

Try a push-up? Fuhgettaboutit.

The cruelest reminder, however, is this post-prednisone belly that sticks out in front of me like one of those radar bubble contraptions on weather-tracking airplanes. You’d think I was hunting hurricanes from my mid-section. Or, maybe tornados.

Whatever it is, this protrusion is really starting to bother me. It appears every time I look in a mirror or a store window reflection. Hey, who’s that pudgy guy looking back at me? Oh, it’s me. It’s me?

Worse, there appears little chance that I’ll be able to reduce the size of the thing any time soon since I can’t run or even do a push-up. I can’t burn enough calories fast enough to counteract the ones I’m taking in, not to mention the vast quantities taken in during the prednisone days.

(- Vast quantities of calories?

- I thought I told you not to mention that!

Sorry, I couldn’t resist.)

I don’t feel all that fat. I don’t feel sick. Nor do I see myself
as fat or sick (unless I look at a mirror or a store window reflection).

I trust I’ll get back to something resembling my real self—hopefully before ski season. Meanwhile, I guess my body and mental images of myself need a reality check.

MDS: The Good News & The Other Good News

The good news:

As of Wednesday, the platelet count was up from 39,000 to 118,000.

Breaking the 100,000 mark, for no real reason, represents some kind of milestone. Although it doesn't appear to hold any medical significance—unlike sinking below 10,000, which sends you directly to the hospital, no questions asked—the positive psychological effect is palpable. Jumping into six figures like that smacks of progress being made.

Reaching 39,000, just a week ago, provided a strong emotional "up-tick," to use economics lexicon au current. But, still, "Only 130,000 more to go to reach normal," I muttered to my ever-patient spouse.

"Spoken just like a...Mitch," she replied with a soft scowl.

Well, it looks like we've knocked off about 80,000 of those 130, and normalcy doesn't look so far away. I have no idea whether what's causing this. Vidaza, Procrit (which stimulates bone marrow activity and which the doc shoots into me at unspecified intervals), getting off prednisone, or all of the above.

Or, maybe it's all the prayers and good vibes being sent my way. No matter. I just hope the up-tick continues.

The other good news:
Eighteen holes of golf were played on Friday without

• fainting
• getting dizzy
• getting the shakes
• or otherwise feeling weak

True, we didn't walk the course, but used driving carts. Still, in 86-degree heat, it was something of an accomplishment. Also of accomplishment was the ScoreWorthyness of the round

• 9 ScoreWorthy holes out of 18
• 7 double bogeys
• 2 bogeys
• 3 instances of 2 good-shots-in-a-row
• 2 series of 3 good-shots-in-a-row
• 1 record-tying set of 4 good-shots-in-a-row

For those who aren't familiar with ScoreWorthy Golf (TM), it's my own scoring system based on shooting two over par on any given hole, and rewarding yourself for hitting consecutive good shots (you yourself being the one who determines by no set criteria if a shot qualifies as "good"). A ScoreWorthy website will be forthcoming soon.

So, all-in-all, much progress is being made. I'm trying to keep a lid on my optimism. (Never get too high or too low, as the coaches always tell the players, but play hard and be emotionally steady.)

But, I'm certainly not complaining.