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: Snowtime Blues

It was a long Christmas Day. Plenty of presents. Too much food. Basketball on TV. Way too much food. And, I managed to stay upright for most of it.

After a 90-minute mid-morning nap.

But, by 8 p.m. I was a basket case. Seems to me that once-upon-a-time 2 a.m. was the "basket-case" hour. Ah, but that a different lifetime, one that came long before kids, not to mention MDS.

Still, I'm not pleased. It's been raining since dinnertime last night, but prior to that there's been all this snow on the ground. It was mocking me. "Here we are," it was saying, "all fluffy and white and slippery, and you can't even consider sliding on me."

My ski gear sits, as inactive as I am.

For non-snowsliders out there, this kind of downheartedness might make little sense. But, think of this: for we snowsliders who live in the metro northeast, the season is, at best, three-plus months long. It begins in earnest in early December, and is over by early April. One must slide at every opportunity.

To make the season longer requires travel to far away destinations. Places where the air has little or no oxygen. Places reached by expensive and extensive airplane rides. Airplane rides riddled with germs.

So, I sit—or lie around—watching the calendar creep towards January and the ski season slipping past without knowing if I'll ever get out there. Considering that a 20-minute walk around the park pushed my physical limits the other day, one really must wonder about what's possible.

Of course, this is about more than skiing. It's about what one's physically capable of doing; about sustaining a physically active lifestyle; about being able to dispel tension and express creativity through activity.

I'm still hopeful that I'll get in my outdoor sliding time. But, I'm sorry, no amount of Turner Classic Movies will substitute for its loss. I've been running around outdoors for too long to think it doesn't matter much.

Skiing with MDS Proves a Trial

A tough weekend, albeit initially enjoyable.

I drove to North creek, NY, in the Adirondacks Friday afternoon. The drive was easy but, despite a late morning nap, I arrived tired.

After an excellent dinner and an overnight in a fine hotel, spent some of Saturday playing "travel writer," talking to locals about what's happening in North Creek (good stuff—see Good Scene at Gore Mt. & North Creek NY), then went up to the ski hill.

• Snow: good.
• Weather: decent (25 degrees, mostly sunny, some wind at the top).
• Ski legs: terrible.

It was a four-run day, divided by lunch, with my quads screaming all the way, and my energy sapped by midway on run two.

Spent the night at Phil and Brigitte Johnson's, friends who live north of Albany. Much shivering; couldn't get warm. Bothersome, this was—it just hadn't been that cold on the hill, and I hadn't been out there all that long.

Drove home Sunday morning, immediately went into nap mode, and felt like crap the rest of the day. Most of which was spent sleeping or trying to sleep.

At least I got to watch the Dallas Cowboys lose while I lay there.

I'm not sure what I expected to happen when I finally tried to ski in earnest. But, to be frank, I am not encouraged.

And tomorrow: Shots! Well, I do know what to expect from that.

Sorry to sound so glum. But, I am at the moment.

MDS: On Skiing & Ski Boots

Sunday was the big day. Just enough snow to ski. Not much. But enough for two short runs.

The results?

Yes, I can still ski.

Even better—the boots fit, and I wore them.

Seems that, just as I was heading out the door for New Hampshire (well, metaphorically, anyway), Laina asked an all-too-pertinent question. "Will you be able to wear your ski boots with the inflammation on your legs?"

Ski boots, for those who haven't worn them, put significant pressure on the shins (home to the inflammation on my right leg) as you bend the knees and move forward. And, they pressure the ankles (where the inflammation lives on the inside of my left leg) as you edge the skis.

This, I suddenly realized, could be a problem.

First, I tromped around boot-clad in the hotel room. It was fine. But, hotel room stomping, while pleasantly annoying to the people lodging on the floor below, doesn't really simulate moving downhill.

Then, to the slopes.

And? No more discomfort than usual. (These heavy plastic boots are not the most comfortable things to begin with.)

And, the skiing itself wasn't exhausting. I even fell and got up without incident.

So, a Little Victory.

Come next Saturday I expect to put it to an all-day test. I expect to pass that test, too.

Skiing with MDS: Will I Be Any Good?

So, after nearly seven hours of driving, I arrived yesterday in New Hampshire to start the ski season, although today was entirely spent in a ski journalists' meeting, which may not be a bad thing because there is little snow in sight. It was 57 degrees and raining when we arrived.

But, today, one of my colleagues asked me if I was "ready to ski."

That, as mentioned in the last post, remains the burning question.

Ready is the operative word.

Frankly, I'm a little nervous, and I have been since this MDS adventure began. I know my strength and stamina are reduced. I don't know what that'll mean on-snow.

More importantly, I don't know how I'll react if my ability to ski is diminished.

Yes, I know—go with the flow, do what you can, and all that wise, rational advice.

But, c'mon. Skiing itself isn't rational (just ask my wife!). There is nothing rational about strapping a pair of boards to your feet and sliding down steep hills and fast speeds.

Fun? Yes.

Exhilarating? Absolutely.

Rational? No.

So, I doubt my reaction to any decreased ability or durability will be rational or show completely reasonable perspective.

It would be nice to discover I'm not as "out of shape" as I fear, but I am rational enough not to expect nothing to have changed. What and how much has changed comprise the looming cloud.

The good news? There's so little snow here right now that, given my shots and travel schedules, I'm not really going to find out where I'm at for nearly a month. And, maybe by that time I'll have recovered some more fitness and stamina and it won't be as bad as feared.

As the skiers say, "Keep 'em pointed down the hill, and go for it."

Skiing with MDS: Fear of Falling?

"Is your red cell platelet count good enough to let you ski?" asked my cousin-in-law, Dr. Bob.

Bob's an emergency room doc for whom I've a lot of respect as one who's on his game as a diagnostician with excellent broad medical knowledge. ER guys see it all, after all.

A question like that, coming from a genuine, licensed, for-real doctor, should've given me pause.

It didn't.

"I'm okay," I replied without hesitance, and perhaps a bit to much certainty. "Dr. MDS says 100,000 is the bottom line. As long as I'm above that, I'm okay."

He did say that, Dr. MDS.

But, if I acted like I was 100 percent sure, I was faking it. The season's first fall on the slopes looms ghostly in the back of my brain. I distinctly recall last season's first fall: a major crash on a steep slope in Jackson Hole in which I pretty sharply cracked the back of my head on hard ground. It was a real-life ad for helmet wearing (which I always do).

Head trauma ranks among the most salient watch-out-fors for those with low platelet counts. Smacking your head with low counts can, I understand, lead to brain hemorrhage. Even for guys like me whose head is most likely empty.

Now, my counts have been bottoming out at 112,000 to 120,000-ish, so I'm above Dr. MDS's bottom line. And, as time moves along between Shots Weeks, the count rises nicely, having gone as high as 179,000, which is higher than they were before MDS arrived.

Still, that little birdie of doubt tweets in the background. What if I really crash?

Well, it's like the old joke: "Doc, it hurts when I do this." "So, don't do that."

Crashing might not be an issue this weekend. There's little or no snow up in New England where I'm bound. But, in the long run, I guess I'd better implement Plan-A: stay upright, stupid.

MDS: Too Tired to Ski?

Yesterday fatigue smacked me like I hit a brick wall. Could it have been five napless days followed, after a napful day, by four more napless days?

Or is it nothing—just being tired?

That's the MDS game, as best as I can tell. Lots of physical symptoms which can't be directly traced to the syndrome or the meds, but may be caused by them.

And, they come and go.

Like the hand and knee pain from last week. Whatever happened to them? Don't ask me. They disappeared as quickly and inexplicably as they had appeared.

This current fatigue wouldn't be too bothersome (after all, they say I was born tired) except that we're perched at the beginning of the ski season. Notwithstanding a near total lack of snow in New England right now, the schedule calls for skiing in New Hampshire starting Friday, and being tired before I even go there rather bothers me.

This boy must ski to stay sane.

But, who knows? Maybe the snow gods are sending a message by withholding not only snow itself, but weather cold enough in which to artificially make it. Are they telling me something?

Maybe.

But, if that's true, why did they dump 14 feet of snow on Whistler in three weeks time? Perhaps they're telling me to "Go northwest, young man"?

Such are the deep philosophical questions that try a man's soul. These and questions like:

• What should I have for breakfast?
• How many skiers does it take to change a light bulb?
• Why did the chicken cross the road?
• And, of course, why me? Why not that guy over there?

These and other questions may soon be answered. But, first, a nap.

MDS: I Got the Low-Down Blood Count Blues

Yesterday's blood counts:

• Hemoglobin—12.1
• Platelets—75,000

The 75,000 number concerns me.

Dr. O continually reassures me that it's normal for the count to drop after Vidaza Shots Week.

But, looking back, I don't recall any recent time it's dropped so low.

And, when it dips below 100,000, I begin wondering (wondering—not worrying; not yet, anyway) what that means. Because Dr. MDS had said that above 100,000 meant I can do whatever physical activities I want.

So, if I intend to ski—which I certainly do—does that mean I can't ski during certain weeks? If it does, how am I to know what the platelet count is at any given time? Monday's 75,000 could be Thursday's 110,000. Or Saturday's 150,000.

Do ski resorts have blood sampling stations adjacent to their lift ticket windows?

And, let's not even talk about low platelets short-sheeting my energy.

Meanwhile, the hemoglobin and white cell counts remain excellent. So, what exactly does that mean, anyway?

This is some kind of proverbial or cliched psychological roller coaster ride. But, jeez, it's my daughter who likes roller coasters, not me. I'd rather slide on snow, thank you.