MDS Becomes AML - Cleared to Travel. Soon.

Some begging was required. Some cajoling. A few promises. But, this AML-MDS victim has been cleared to get back on an airplane. Come March 23, he'll be boarding flights to Sun Valley, Idaho, to attend the annual ski journalists' national meeting, where he'll be able to fulfill his duties as the organization's paid secretary-treasurer.

This is so good for my head.

Today's counts are pretty good, too:

• Platelets: 74,000
• Hemoglobin: 9.0
• White Cells: 5.2

Still sinking slowly, as they should. Dr. O says they'll continue downward til about Tuesday, then start back up. Stomach plumbing and all vitals are functioning fine.

On the Road Again

The terms of the travel deal are not onerous. My promises:
wear a mask on the plane

• carry disinfecting wipes and use them on the tray tables, etc.
• carry Purell and use it copiously on hands
• refrain from too much hand shaking and welcome hugs
• and, needless to say, no skiing.

It will be a bit difficult to be hanging around Sun Valley—one of the continent's finest ski mountains—without putting on the boards. But, I fully realize that I'd not be able to ski more than half a run on that big hill, anyway.

The good news is that Ketchum ranks among the finer ski towns, as well, so there will be plenty of window shopping, gallery hopping and just wandering around to do. I'll walk on the treadmill and, who knows, I might try my hand at fly fishing.

Needless to say, I'm excited. I've clearly reached a point where I need to something significant to look forward to, and where I'm feeling useful. This should do the trick. Plus, knowing that immediately upon my return I'll be landing right back in the hospital for more consolidation treatment (or, if we're extremely lucky, for the beginnings of bone marrow transplant) keeps things in perspective.

For all the traveling I do, I hate to fly. But, this time I'm psyched about getting up at 3:30 a.m. to make a 6 a.m. flight, being crammed into that coach seat, being charged to check my bag, not being offered any in-flight food, and wondering if we'll make connections in Chicago.

What fun.

MDS & Flu Shots - Go the the Head of the Line

Traveled to Dr. Primary's place yesterday at 8:30 a.m. for a flu shot. By 4 p.m., I was convinced I had the flu.

The psycho head games continue. To quote the Scarecrow: ah, if I only had a brain.

Prior to my visit, I inquired of Dr. P by phone his thoughts on the H1N1 virus inoculation. He was apparently unaware of, or forgotten that, I was on Vidaza.

"I don't think your bone marrow condition means you're in a priority situation," he said. "You're not on chemo, or anything like that, right?"

"Well, actually I am. I'm on Vidaza, which is a kind of chemo.  Dr. O says I'm a fully qualified 'chronically ill senior.'"

In that case, he agreed, I rated priority.

Of course, his office doesn't have he vaccine as yet. "Keep calling," he said, "and when we do have it, tell the desk I said you're a priority case. They won't believe you, naturally, so they'll check with me. But it'll be okay."

Well, why should they believe me? We've only been dealing with the docs in this practice (who are universally wonderful, by the way) for 20 years or so. I could just be an hysterical patient—or an egomaniac—who craves attention.

Never mind. I've finally made it: a priority case. VIP. Head-of-the-line. On the list. The Big Time.

This is some crappy realm in which to attain status—a mystery illness that pulls down an untested treatment for another mystery illness.

I think I'd rather earn flying first-class privileges, or 50 yard line suite seats at the football games. But, you can't get those via a disease.

My 4 p.m. flu-like symptoms disappeared by 8.

No flu. No vaccine. No first-class flying. But, I'm priority. We'll just have to take our perqs where we can find them.

MDS: Jet Lag Sets In

We're back from London. We appear to have survived the return flight—no fellow passengers suffered soughing or sneezing attacks in our general area of the plane. But, now, having risen from a lousy sleep at 4 a.m., I have a new quasi-medical question.

Does MDS effect jet lag?

Because, you see, by the aforementioned 4 a.m., my body was screaming at me that it was way past time to get out of bed. NJ 4 a.m. equals London 8 a.m., and had we slept til 8 in London, we'd've almost missed breakfast.

And now, at 6:30, my stomach is crying to be fed. It clearly feels that it has missed breakfast.

We won't know the longer term jet-lag effect for a few hours, if not a few days, but right now I'm thinking I don't stand a snowball's chance in hell of getting through this day without multiple naps.

I doubt any of this time displacement is affected by MDS, but constant vigilance is a lifestyle these days. And, really, why not focus on nonsense like this? Otherwise I might have to do something constructive. Or worry about real issues like world peace, or something.

Tomorrow—a flu shot. Can't wait.

MDS: Coughs & Sneezes in Crowded Places

On Sunday, we traveled by train from London to Brighton and back. Few people were on board going to Brighton, but the return trip train was crowded.

A couple who traveled for about a third of the trip sat near us, the male coughing intermittently.

Last night, we went to the theatre. (Saw John Lithgow performing "Stories by Heart", his own one-man show. Excellent.) The young lady sitting next to me was sniffling and coughing. She was obviously nursing a cold.

I sat squirming in these semi-crowd situations. I'm supposed to "avoid sick people," according to the basic recommendations for handling MDS.

How do you do that on a crowded train or in a sold-out theater?

The situations induced slight paranoia. Better not breathe, I told myself. Better not touch anything, like the armrest you share with that young lady. At intermission, I asked Penny to switch seats with me. I doused my hands with Purell. Even considered sticking some up my nose. (Would that disinfect the air I breathed?)

Doesn't this young lady know that this cold she's sharing with us theatre-goers could kill me?

Well, no actually. How could she know that? Bet she hasn't even heard of MDS. Besides, just because she has a cold, doesn't mean she must lock herself away until it goes away.

And, besides that, you (I) can't avoid everyone in the world who has a cold.

And, besides that, could it really kill me? Or would it just be more severe for me than a cold used to be?

Is this nuts? Will I drive myself nuts?

And, now, I'm about to get on a plane for an 8-hour flight. God forbid anyone coughs or sneezes in that environment!

MDS: Stamina Holds Up in London

Well, the stamina question was answered yesterday. You remember the stamina question, yes? How long would it take MDSMitch to reach utter exhaustion after flying all night?

The answer: 2.5 days.

The bottom finally dropped out yesterday (Friday), 2.5 days after landing.

Still, I think that's pretty good. And, even though I didn't even want to get out of bed yesterday, not only did I do that, but managed to stay on my feet through a morning at the Cabinet War Rooms, a stroll in the Westminster Abbey/Houses of Parliament area, and a piano concert at the Church of St. Martin-in-the-Fields.

All that after Penny kept me up til all hours at Royal Festival Hall for a London Philharmonic concert the night before.

Then—collapse and fair uselessness until it was time for a classic half-pint-and-meat-pie at the local pub.

Delicious, that was.

So, really, I'm holding my own as we play tourist here in London. it's yet another life victory over the mundane.

Cheerio, old chaps.

MDS Mitch Goes to London

I've survived an overnight flight. My first since MDS arrived. To London.

Chalk it up to another "victory over the mundane," this time to flying all night.

Rational or not, I was concerned. You arrive early in the morning, sleep-deprived, your body pretzeled into a series of aches and cramps, your digestive system totally tossed out of whack.

And, remember—you've been angsting all day about flying. Did you remember:

• passport;
• camera;
• voltage adaptor;
• voltage converter;
• to re-charge the re-chargeable batteries;
• to pack this;
• to unpack that;
• medications;
• especially medications?

Anyway, I can't sleep sitting up. Not even armed with a neck pillow and prescription sleeping pill.

On this trip I even tried my long thought-out pillow experiment: wear the neck pillow backwards to keep my head from lolling forward.

No go.

And, every sneeze of cough on the plane or in-bound subway made me wince. Germs! Beware the germs! They've everywhere!

And, you know, these international germs are particularly virulent. And, I hear, the British germs especially don't like MDS people from New Jersey. After all, Jersey was the cradle of the revolution. I'm sure they still resent us for that.

But, arrive we did, all in one piece. All-in-all it looks like this "chronically ill adult" survived the initial stages of the vacation.

Need, want, demand more? These travels are chronicled at: Penny and Mitch's Travels, and at GraysAtPlay – Traveling Boomers' Adventures.

MDS Airplane Survivor

Home again. Home again, home again, home again, home. And, another airplane flight survived.

It's hard for a life-long beard picker (or, to be more kind in our nomenclature, let's say "beard stroker") to keep his hands away from his face for five hours—even if the airlines provides 40 movie choices, 150 CD selections, and a slew of video games and TV shows for distraction.

But, like a pair of mantras, the MDS advisories repeated in my head as the Grand Canyon, Rocky Mountains, Midwest farmlands and Smokies passed below us.

• Avoid sick people.
• Purell your hands often.
• Don't touch that!

And, so the daughter and I passed across the country apparently without incident. That's to say, at least, I didn't awake this morning with any apparent illness.

Still, I don't like being in airplanes any more. Everywhere I look is a surface that blasts the "Don't touch that!" mantra at me. Every sneeze and cough within the flying tube carries overly ominous menace.

If I work at it, I could readily become a full-fledged hypochondriacal paranoiac who's ready to take up residence in a sterilized cube.

Or, I suppose, it might be more rational to relax and just keep flying.

Or, maybe I could borrow Dorothy's ruby slippers, and intone her mantra. There's no place like home . . .

It worked for her.

Tired & Fat

As this west coast trip comes to an end, a few things are on my mind.

• How to get any exercise when traveling, since the typical day goes napless and is tiring.
• How to eat a whole lot less, especially if I'm not exercising.
• How, therefore, to create/maintain some kind of routine whilst in transit.

Not earth-shattering stuff, I realize. But, it's a pretty tiny mind I carry around, and this is what currently fills it.

Clearly, I need (or function best with) a normal routine:

1. up early
2. work early
3. eat
4. work some more
5. visit Dr. O (when necessary)
6. eat
7. nap
8. work some more
9. exercise
10. eat
11. laze through the evening to bedtime

This is hard to do on the road. Still, I'm supposed to be some kind of travel writer. So, I should be able to function on the road without becoming a tired, tiresome, run down lump who accomplishes nothing but eating and kvetching.

Not that's I'd kvetch about the eating I've done on this trip. Far from it.

But, to quote the late, great Phil Rizzuto—holy cow! Will you look at this belly? It's entering a room five minutes before I do! And, I'm half asleep when I finally enter behind it.

Could be it's time for a late-August New Year's resolution. Less food, far-far fewer sweets, and more exercise.

Sounds easy enough. I'll start tomorrow.

More MDS & Travel Fatigue Sets In

Five days on the road, and the message has been brought home once again—when traveling with Vidaza-treated MDS, you'd better schedule time for a nap.

Of course, it would be easier to handle the fatigue situation if this patient could sleep on airplanes. Unfortunately, the only time that's been achieved has been when flying internationally in first class cabins equipped with flat-bed seats. And, needless to say, that was only experienced on someone else's dime on a non-domestic airline.

So, flying from NJ to CA on Friday yielded no sleep.

And, charging from one family gathering to the next yielded no naps.

Thus, three days went by without naptime. By Monday, full exhaustion had set in and, after a half-day of sightseeing, this boy collapsed into mid-afternoon bed, passing out for a full 2-plus hours.

And still managed to sleep a full 8 hours that night.

Alas, yesterday, the vicious cycle began again. Even though the flying took only an hour, we'd left so much time for getting to the airport (stung by, and wary of, the horrendous Calif traffic), and we required so much time to get from the arrival airport to grandma's house (embroiled in Calif traffic), that naps weren't in the cards.

Today, however, will be a different story. Out of bed at an ungodly hour to complete an assignment due by mid-morning eastern time (no—I didn't wait til the last minute; the work came in whilst I was in flight on Friday; a very short lead time, indeed), I've completed the task and fully intend to sleep it off this afternoon.

It's clear that multiple non-nap days are not a god idea. Now, I just have to remember that—and so something about it.

MDS: Dare to Fly

Yesterday I dared to board an airplane for the first time since the MDS was diagnosed.

Call me irrational, but this I regard as some kind of minor victory over the mundane.

I'd gotten sick two of the last three times I'd flown—the last having been the ill-fated trip to Minnesota in March that spawned the stomach virus that revealed the MDS. So, the idea of spending 5.5-hours confined in that metal tube at 35,000 feet with 200 germ-carrying others had spawned a certain level of paranoia in me.

I entered the vehicle armed with Purell, vowing not to touch any surface that wasn't absolutely necessary, and to keep my damned fingers away from my face (not an easy task for a habitual beard stroker).

I actually did pretty well on that last score; didn't poke at my own face hardly at all.

I didn't touch anyone. Nor did I touch anything. Never allowed my fingers to caress the silken seat cushions, nor to pound on the plastic drop-down table. Didn't even touch the ground with my feet as I walked down the aisle.

You think I exaggerate?

Okay, I do.

Still, here I am, typing this all the way on the other side of the country while showing no apparent ill effects from this milestone air travel experience.

Of course, whatever horrible bug was traveling with me might need a longer gestation period than one day to manifest itself. But, I'll remain optimistic for the moment. After all, I still must fly home in a week's time. And, who knows what kind of exotic West Coast germs are lurking here to menace me?