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."

MDS Legs in London

Onward we trudge, traipsing through London as if on the Last March to Victory, testing not only my stamina, but Penny's, as well.

Museums, street markets, shopping, string quartet concerts, walks across the Thames, negotiating five flights of hotel stairs—it was in all in a day's pleasure yesterday.

I looked at my lower legs last night. The right one appears as if it's suffering from a sporadically placed but significant acne. The right one shows some acne-like red bumps, but the shin (where the skin biopsy was done), more than anything, looks like a plum is growing there.

Are there more red blots now? Is that purple blob growing larger? If so, is that all related to walking miles per day?

Probably not. It's more than likely my imagination, combined with a traveler's fatigue.

But, at this rate, I'm never going to win the "most beautiful legs in New Jersey" contest, never mind the "most beautiful New Jersey legs currently visiting London" contest.

What's a poor, middle-aged MDS boy to do?

Keep on truckin'.

This is a great city. So, Vidaza be damned, we'll do just that.

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.

Well, it's Friday of Vidaza Shots Week (VSW), and I'm holding up surprisingly well. I only collapse with body aches and fatigue after lunch. Work gets done in the morning.

This contrasts starkly with the last VSW in which I felt like crap already on Monday.

And, ingesting nine Metamucil capsules per day (up from two/day during non-shots weeks) seems to be keeping my bowels in order, countermanding the Zofran anti-nausea meds.

Not that the Complaint Department has closed, mind you.

• The shots sites hurt/itch like crazy
• random itching pervades my body
• the stitches on my leg have begun to itch
• the only sports commentary I get on the car radio whilst driving to/from Dr. O's is about the damned Yankees instead of the important news about football.

Yes—the Complaint Department is always open.

Still, here we are, more than halfway through the shots ordeal, and I'm showing more energy than during any other shots week.

A good thing.

MDS: An Energy Un-Crisis

A funny thing happened yesterday in the middle of this hellish Vidaza Shots Week (VSW). Energy appeared.

I've been feeling crappy all week, and spending inordinate amounts of time lolling in front of the TV watching sitcom re-runs. And, yes, that's been mollified a bit by discovering that a Ted Danson mini-fest (Cheers and Becker) plays from 5-7 p.m. daily on WGN-Chicago (Channel 8 on our system), but still the sluggishness was getting me down.

Then, energy to spare suddenly, mysteriously appeared late yesterday afternoon.

Down to the basement went I, where a half-hour was spent on the treadmill, and another half-hour was spent doing some strength work with exercise bands.

This, of course, makes no sense.

The later in the VSW one progresses, the lousier and more tired one expects to feel. By dinner time, I was almost perky.

Not to worry, however. By 8 o'clock I'd returned to a near-vegetable state, feeling achy all over.

I'd like to say there's some way to make sense of all this, but this MDS thing hasn't made any sense to me from the start, so why should a sudden feel-good burst be logical/reasonable/understandable?

Well, at least one thing is consistent: my shot-riddled arms are sore and itchy. As the Gershwin bros might've said, "They can't take that away from me."

MDS: A Good Day

Just a quick follow-up on yesterday.

The day was passed with

• great productivity
• a healthy nap
• a nice workout.

So, what can we conclude from this?

• That consecutive, napless, golf-filled days can be tolerated when it's been nearly three full weeks since the last Vidaza shots.
• That being home alone (spouse still on the West Coast; due home today) induces enough boredom to brook such a schedule.
• That having meaningless work chores to do in bounty (much data entry is going on), affords sufficient compulsive "must get to the end of this crap" behavior to keep going.

Call it a lifestyle. Temporarily, anyway.

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: Ready? Vidaza—Round 4

All good things come to an end, the cliche has it, and so, too, do our Maine vacation and, come Monday, the current Vidaza shot-free MDS period.

Too bad.

As nice as this vacation has been—

and it has been fine, finishing yesterday with a round of golf in the rain that was about as good a round as this duffer can play (perhaps I should always play in the rain)

—this three-week Vidaza hiatus has been better.

• no sore arms
• no itching shot sites
• no fatigue (good energy, as a matter of fact)
• no feeling bad
• feeling much better, actually, thank-you-very-much.

But, it's a new month and that means a new shot series that, understandably, I'm not looking forward to.

Perhaps being on the road has exaggerated a liberated, shot-free feeling; made the last series seem longer ago than the past series have seemed at the end of the break.

Or, perhaps just feeling more lively has made the MDS seem less real, more removed.

Whatever is causing me to sense distance between myself and the required shots, this time a false sense of security has crept in.

• I feel fine.
• So, why undergo these shots?
• Maybe I'm not so sick after all.

It rather reminds me of having to return to school at summer's end. Last year's teachers, homework, exams, etc., always seemed so long ago. Did we really have to start all that again?

This fourth Vidaza series is supposed to be telling. After it, Dr. O reevaluates the bone marrow and, if I understand all this correctly, she decides if (that?) the drug is effective and should be continued.

No pressure?

MDSMitch Goes to Maine

Immediately upon arriving here in Maine, two things happened:

• fog set in
• exhaustion set in.

According the my astute mathematical calculations, seven hours were required to drive from Hartford to Southwest Harbor, on the edge of Acadia National Park.

Then it was delicately pointed out to me that we had arrived in Ellsworth too late to stop in Reny's Department Store, which closes at 5 p.m. on Sunday.

I first learned of Reny's, a Maine, family-owned chain of 15 stores, from friend, travel writer extraordinaire and Maine expert Hilary Nangle (or Travels with Hilary). You never know what you'll find in this place, but it has proven for me to be an excellent source of $3 reading glasses.

Anyway, if we were too late to stop at Reny's, it was noted, which is at least an hour's drive from Southwest Harbor, and we left Hartford about 10:15, we couldn't possibly have gotten here in 7 hours.

So much for math-by-Mitch. We see now why his math SAT's kept him out of his original college of choice.

We are here, however, no matter how long it took. And, it turns out that seven-plus hours of driving (it wasn't all driving—there were stops for necessities), may still be a tall order for a man with MDS. Because right now I can barely see straight enough to type this.

But, since the other arrival event—the fog—is obscuring all there is to see anyway, it may be that an 8 o'clock bedtime may not lead to any feelings of deprivation. Not even sleep-deprivation.

So, to all a good night.

MDS Man Shoots Excellent Round of Golf

MDS Man Shoots Excellent Round of Golf

Yes, I can see the newspaper headlines now. And, the story...

"Yesterday a precedent-setting round of golf was played on the Orchard Hills golf course in Paramus, N.J., when an MDS man shot a completely ScoreWorthy 9-hole round of golf in a persistent rainfall."

(ScoreWorthy golf, strictly my own invention, involves making double-bogey or better on any given hole. A completely ScoreWorthy round means all holes were double-bogey or better.)

Okay, it's a bit of a stretch. But, this MDS and golf seem to have much in common.

• MDS: blood counts go up-and-down.
• Golf: scores go up-and-down.
• MDS: energy levels up-and-down.
• MDS: golf shots go up-and-down (when they don't dribble on the ground).
• MDS: causes profound psychological ups-and-downs.
• Golf: causes annoying psychological ups-and-downs.
• With MDS: some days you're up, some days you're down.
• In golf: chipping onto the green and putting once is called an "up-and-down."
• MDS: was characterized by my GP physician as "uncharted territory."
• Golf: the way I play it, is surely uncharted territory.

So, yesterday, nearly two full weeks after the last Vidaza shot cycle, oddly, my energy was down, the rain was coming down and, even more oddly, my golf game was up.

Searching for logic in these two realms?

I am. Can't say as I've found it in either. Yet.

MDS Mitch Goes Pedaling

Yesterday: 7/19/09.

Two-hours on the South Branch Sussex Rail Trail, Mt. Olive NJ.

No post-cycling pain, stiffness, exhaustion or other after-effects.

No bug bites, either.

More blood counts today.

Chris Knapp photo.

MDS: Symptom, Imagination or Side Effect?

Lately I'm itching a lot. More than usual, it seems to me. And two little pimple-like bumps have appeared, one on each arm near the area where the needles go in. Add some other phenomena and symptoms that appear sporadically—like small insect bite-like red marks on my ankle—and I find myself frequently wondering:

• Is this a medication side effect?
• An MDS symptom?
• Something perfectly ordinary?
• My imagination?

This uncertainty adds to the MDS perplexity. There are, after all, several known side effects of the meds being administered...

• nausea from the Vidaza
• constipation from the Zofran that counters the nausea
• diarrhea from the laxative that counters the constipation
• skin irritation and shot-site itching from the Vidaza injections
• general fatigue during the shot cycle.
  

Is it a curiosity, then, that any little symptom or physical manifestation causes me to wonder?

Lately it seems to me that my hair is thinning. Is it, really? After all, Vidaza is a form of chemotherapy, and chemo causes hair loss.

Lets' say it is thinning. Is that because of Vidaza or ordinary ageing?

Or is it not thinning?

My delightful spouse says it's not thinning. The hairline is merely receding in a normal fashion for a 61 year-old. Since she's the one who cuts my hair, we must give her opinion a certain validity. She knows the strands up-close-and-personal.

But, every time I brush it, I see less hair there.

On some level, I don't really care. Being bald wouldn't be the worst thing that could happen. (Although I'd be tempted to start shaving my head, which makes absolutely no sense; I haven't shaved my beard in 40-plus years on the grounds that it's too much hassle.)

But, it's the not knowing if this thinning hair is a side effect, a symptom or imaginary that bugs me. Or the

• itching
• pimply-bumps
• red marks
• diminished appetite
• sore feet
• memory lapses
• infant-like crankiness when tired
• generalized despair at sports results
• or a nearly uncontrolled urge to eat nothing but sweets.

Inquiring minds wanna know.

MDS: Lead Legs

An ad that airs during TV golf coverage states that "you'll walk five miles in a typical round of golf."

Seems a lot, but right now I'm believing it.

After walking 18 on Tuesday, I'm suffering a case of "lead legs." I don't think you'll find this syndrome in the medical lexicon, but baseball pitchers refer to it when they tire late in games.

The name says it all—legs that feel like they're filled with lead. It makes climbing the stairs something of a challenge.

So, for you skeptics out there who contend that golf provides no exercise, I present myself as proof that it does. If you'd like to try it yourselves, simply

• cut off two of your chromosomes at the "X" to effectively screw up your bone marrow's red blood cell production
• allow MDS to set in
• watch your cell count drop precipitously
• lodge in hospital for five days, enjoying IV meds in abundance
• once home, indulge in chemo-style drugs-by-injection for a few months
• go walk five miles in a mildly hilly landscape.

Well, the legs might be feeling like lead right now, but it's a happy leadeness. Or, should that be a leaden happiness?

Nine holes more tomorrow and another bike ride on Sunday.

Chromosomes be damned.

Blood Counts Down—Golf Game Up

Funny thing. On Monday, en route to the Albany area to play golf on Tuesday, I "stopped in" to see Dr. O for my weekly blood letting.

Never thought I'd be visiting any doctor because I was "going to be in the neighborhood." But, there you have it.

Call it a lifestyle.

Okay, the little critic's voice in my head is saying, get off the philosophizing and get to the results. This week's score:

• Hemoglobin - 11.7
• Platelets - 89,000
• White Cells holding strong

Now, really. I do find this confusing. Why? Because my energy is better than ever. I'm feeling downright good.

Seems like every time I'm feeling good, the counts are lower.

I do understand that the red cell counts will go down during and immediately after the shots cycle. I get that part. Really I do.

And, I also grasp that the counts didn't dip as much as last time.

But, what I don't get is this: if the counts have gone down, why am I feeling so good?

"Shut up and play golf," my daughter said to me as we chatted on the cell phone as I drove north on the NY Thruway (yes, hands-free) . Well, not literally. But that was the gist of her comment.

So, I did. Played 18 with my friend Phil, walking a full round for the first time this summer and (get this) set a personal record.

Three pars in one round.

Wow. Maybe my golf score goes down as the blood counts go down? No, that can't be it. It's gotta be skill.

Yeah, right.

Little Victories

Once upon a long time ago, a friend told me that she'd written her college application essay on "finally learning to drive" after resisting for several years.

"The theme," she told me, "was A Victory Over the Mundane."

It's a phrase that's stuck with me for more than 40 years. And what I accomplished yesterday and today may indicate such a victory:

• Yesterday—1.5-hours on the treadmill and doing strength work
• Today—35 minutes cycling

To actually put in some semi-serious exercise time is to have made it over a hurdle that seemed somehow huge.

But, having done it, and not being exhausted to the point of uselessness by it, it turns out maybe that hurdle wasn't so big.

Add to that, 9 holes of golf on Thursday without tiring, and perhaps we're seeing a trend. Perhaps I'm not destined to be a basket case for the foreseeable future. Perhaps the daily nap quotient will be reduced. Perhaps I'll be able to stay awake past 8 p.m.

Perhaps.

After all—none of this exercise raised my heart rate to competitive levels; and it took me almost as long to bike the route I took as it once did to run it. (Wouldn't want to be overly positive. My old man wouldn't approve.)

Another blood count tomorrow may give us more good news. In the meantime, golfing, treadmilling, working out, cycling—I'm chalking it all up to Another Victory Over the Mundane!

MDS: Nodding Off Through the 4th

As the end of Vidaza shots-Round 3 approaches, a pattern seems to be emerging:

• Monday—begin shots
• Tuesday-Wednesday—somewhat normal function while arms become sensitive where shots are administered
• Thursday—arms grow more sore and begin to itch
• Friday-Sunday—exhaustion sets in; much sleeping goes on
• Sunday evening—lethargy lifts a bit, thanks to no shot
• Monday—one last shot, one last dip in energy.

So it came to pass this holiday weekend that the weather finally gave us a break. No more rain. No humidity. Blue skies, bright sun and pleasant temperatures.

And I got to sleep through it all.

Now, there is something to be said for snoozing a long weekend away while watching, during intermittent periods of consciousness,

• Federer set the record for major tennis tournament wins
• Tiger display how golf should be played
• baseball being played in Chicago, Texas, Philadelphia and New York
• and 1930s-40s movies in between.

What can be said about these things, you ask? Well, it's nice to be too tired to care about the sports results, and to be so tired that even the silliest old movie becomes amusing.

But wait—there's more!

This was a weekend of discovery. Chanced upon were:

• the Science Channel
• three versions of The History Channel
• the Nat Geo Channel (of which the folks at National Geographic should be ashamed)
• Fox Movie Channel
• and NYC-TV (where the terrific travel series Globe Trekker plays every night at 8).

So, as rockets glared red this weekend, we've seen that this extended exhaustive slumbering, as the great Hebrew philosophers would've said, [read with a nice Jewish accent, please] "shouldn't be a total loss."

Once upon a long time ago I harbored a fantasy that I'd be in situation—perhaps in a hospital or a mountain retreat somewhere— where for a week or so I'd be permitted/required to do nothing but sleep. "Beware what you wish for...?"

I'm really looking forward to this coming week. May consciousness to reign!

MDS: Golf Therapy

I admit it. I've been leaning toward the morose in these blogs recently. Blame it on fatigue and lack of work deadlines.

(Hint, hint—anyone out there who has an assignment or two (or 12) is welcome to send it along...)

In other words, as my old Mom used to say, "You don't have enough to do."

So, yesterday I dragged my sorry butt out for some golf therapy. Thunderstorms were in the forecast. No deterrent. This outing was as necessary as a baby's diaper change.

Indeed, no sooner had we started, than a drizzle began to fall. By the second hole, it was real rain. We sludged on, draped in slickers.

After a 15-minute suspension of play, we resumed on Number 3. Parts of the course were a quagmire. No matter. Because by then a funny thing was happening—I was playing about as well as I can.

• Twice I found myself putting for par (an unusual event for me).
• Suddenly my drives off the tee were not only traveling in the air (I'm famous for my ground-ball shots), but they were going straight.
• On Two and Five I accurately hit the green from 120 yards out.
• Putts were going where they were aimed.

Move over Tiger.

Sick? Who's sick? We were walking the course, slogging through puddles six inches deep ("standing water" in the golfer's jargon), and I'd totally forgotten I was afflicted. I wasn't even bothered by the upper arm irritation that inevitably comes with Dr. O's shoot-him-up routine.

We played to just off the green on Eight. Then the lightning appeared.

"Get me my one iron!" I called, as we cleared the course and headed for the clubhouse.

It's an old golfer's joke: Ho do you make sure you're not hit by lightning on the golf course? You hold your 1-iron to the sky. Not even God can hit a 1-iron.

Five minutes after we took refuge on the clubhouse veranda, the skies opened up. Rain in torrents. End of round.

We'd played eight holes; I'd been ScoreWorthy (double bogey or better) on six of them.

More importantly, I'd totally forgotten to be weary, in pain, depressed, grumpy, grouchy, crabby or ill-tempered.

Amazing what a little green grass, good company and physical activity will do. Clearly I've gotta do this more often.