MDS Becomes AML - Another Little Victory

Yesterday I put in 20 minutes walking time on the treadmill and managed to do three sets of 20 ab crunches.

Another victory over the mundane.

The doctors and certain folks around here keep telling me I must put on weight, re-gain some of what was lost in the hospital.

Fifteen pounds were lost, by the way. And, I must re-gain the weight so I am better prepared for consolidation chemo and eventually for bone marrow transplant.

By the way, in a brief conversation with Dr. O, she indicated that she likely will want me to undergo at least one consolidation chemo treatment while we wait for the transplant donor. I can't wait.

Meanwhile, to meet the weight gain demand, I'm eating

• ice cream
• cake
• cookies
• pasta
• bagels with cream cheese
• bagels with peanut butter and jelly
• and any other high-calorie foods I can think of.

Wait—not to worry, I'm also eating good-for-you foods like cooked vegetables, some fruits and even some meat for protein (still not supposed to eat raw veggies or fruits that aren't peeled).

But, it occurred to me that high-sugar, high-calorie foods probably aren't sufficient. After all, an incredible amount of muscle atrophy has been suffered from lying around in a hospital bed for a month and three days (but who was counting?), with "exercise" being defined as a slow walk down the hall and back.

For the first time in my life, I've got skinny legs. And biceps or triceps? Fuhgettaboutit.

If one is going to add weight, one should also add some muscle mass into the mix. And, adding muscle requires exercise.

So, onto the treadmill I went.

And, onto the treadmill I will try to continue to go on a daily basis from now on. I'll also try to mix in some upper body exercise with the elastic bands I have left from my shoulder surgery.

Remember the shoulder surgery? Remember the odd little spot that showed up in the MRI that sent all the docs into a tizzy because it might be bone cancer?

Seems like a different lifetime now.

But, in hindsight, that's where it all began. Even if the docs all say that the spot wasn't bone cancer and it had nothing to do with the current situation, I can't help but think it was connected somehow. Still, it created my relationship with Dr. O, and that allowed me to get instant blood test results last April when the MDS first appeared, and instant lodging on the hospital oncology floor.

But, I digress.

Now it's time to gain weight and add some muscle mass—all so I can be better prepared to return to the hospital and be zapped again.

Kind of like fattening the cow for slaughter, isn't it?

MDS Becomes AML - A Walk in the Park

Yesterday Penny and I took these MDS/AML-wracked bones for a walk in the park. We strolled (strolling being about the fastest pace I can muster right now) up to the school and back, a distance of perhaps a third of a mile. The snow is piled pretty high, but the walks are mostly clear and, except for one section, there was no danger from slippery stuff underfoot.

It was delightful and uplifting just to be out there. And, it was reassuring when compared to past experiences.

As I've noted to some by e-mail, when I came home from a 3.5-week hospitalization for a liver abscess in autumn of 2001, I was pretty weak. Still, after a few days, I decided that I should be able to walk the dog. I hitched her to her leash, loaded down with pooper scooper bags, went out the back door and headed up the path to the park, a distance of about 50 yards.

I couldn't make it to the park.

We had to turn around and return home. The poor dog was very confused. She never even got to pee.

So, by comparison, I'm already in much better shape this time. Not only did we make it to the school and back, but Penny didn't have to put me on a leash.

Today we intend to get back out there again. I'm hoping we add more of the park to our circular route, perhaps another third of a mile.

It's imperative, psychologically and physically, for this boy to get himself moving and active. I've never been too good at sitting around the house.

If all goes well, I'll begin taking myself out for walks. And, then I'll add the treadmill at a mild pace.

No pooper scooper bags will be required.

MDS: On Dermatology & Oreo Cookies

Well, now we can add Dr. Derma to the list of docs participating in this medical adventure.

As I expected, she looked at my legs with puzzlement, and she'd never heard of Vidaza, no less whether these bumps on my legs are a Vidaza side-effect. No surprises there.

"Which is the newest one?" she asked, poking at the purpled-bluish protuberance on my right shin.

"I don't really know. I just noticed these two big ones last week."

"Which is the newest one?" she repeated.

"I don't know," I repeated. "I just noticed these two big ones last week."

Pause.

"So probably they're the newest ones."

"It's right on the bone," she declared.

"Yes it is."

She was reluctant, I guess, to start poking holes where there was no so little flesh, muscle or fat to cushion the incision.

She had no choice.

She flattened out her power chair, causing me to lie back. I didn't like that. I'd've preferred sitting up and watching the action.

But, stab away she did with the novocaine needle, then poking with whatever poking implement she used to extract the biopsy-able substance from within. Then, she began to sew.

Stitches? Now I've gotta deal have stitches?

Come back in three weeks, I was told. Replace the dressing after you shower. Keep your leg up. No running on treadmill for a week. Results in about two weeks.

"I'm not going to treat these," Dr. Derma said, staring at my leg, "because I don't know what they are."

Sounded logical to me. I don't know what they are, either.

But, no running for a week just adds a new level of disquiet. Next week's a Vidaza Shots Week (VSW), anyway, so I'd probably not be running anyhow. But, losing these two or three days will just make me that much fatter and more out of shape. Because you know that the inactivity will cause me to eat.

Oh well. Being the good patient that I am, I'll keep my leg elevated whilst I eat extra Oreo double-stuff vanilla cookies. Boy, those things are good.

MDS Mitch Golfs Stowe

I suddenly realized that several days have passed since my last blog entry. No worries—traveled to Stowe, Vermont doing on-site golf research.

Well, someone's gotta do it.

The trip was delightful, although playing Stowe's new golf course, Stowe Mountain Golf Club, was as much like hiking as golfing.

Seems they built the thing directly into the Mount Mansfield and Spruce Peak hillsides. You actually must sign a waiver to drive a golf cart because some of the cart path's switchback descents are so winding and steep.

Maybe they should offer an adventure golf cart driving school?

And, the foliage, approaching peak color, was spectacular, even if it did keep distracting me from the golf shot at hand.

Be that as it may, I seem to have survived playing two consecutive days, first climbing up and down the mountain course, and then in 47-degree weather at the lower-elevation Stowe Country Club followed by the six-hour drive home.

Today I'm feeling a bit bushed, and I seem to have cultivated a headache whilst sleeping last night, but I'm not as tired as I expected to be.

And, the best news is: I played pretty well for 27 or those 36 holes. (I shot horribly on the second-day front nine, but miraculously recovered on the back nine. Go figure.)

The only slightly consternating moment, health-wise, came when I knocked my head against the golf cart roof as I was climbing aboard. With my last platelet counts being below the magic "you can do anything you want" 100,000 mark, I immediately decided I would develop a brain hemorrhage from this bang on the noggin.

So far, however, my head knocking seems to have had no effect.

I guess it was just the Shklear genes—my maternal side—leaking through. My grandma Sarah, who swore she was deathly ill all the years I knew her, ranked among the world's great hypochondriacs. She only lived to 100.

But, she passed along a dominant hypochondriacal gene to both her grandsons named Bernard, and a recessive version to most of the rest of us.

Who knows? If I bang my head harder next time, it might knock some sense into me.

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.

MDS: Gone Golfing & Napless

Can an MDS sufferer survive two consecutive days of golf while going napless?

Will today require two or even three naps?

More importantly, will playing golf two days in a row improve the golfing skills?

These are the questions that move men's souls. Or soles.

For the record, as of 6 a.m. this (Friday) morning:

• energy level—normal
• previous night's sleep—decent
• alertness—fair, with moderate yawning
• enthusiasm for the day's work ahead—middling
• state of golf game—improving with inexplicable signs of actual progress (i.e., many more bogey holes per round than there's any right to expect, with the undoubtedly odd par tossed in).

So, does extra golf induce exhaustion in an MDS world?

Apparently not.

Can it bring happiness to an MDS world?

Nah.

But, it's a healthy distraction. And, on a beautiful day like these last two have been, it's a hell of a lot better than staring at the computer screen all day, no matter how much energy is at hand.

Fore! (five, six, seven . . . oh, just pick up the ball and move on . . .)

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.

MDS:No "Dark Victory"

I was neck-deep into watching Dark Victory before I realized:

bad choice.

Too tired, I thought, to do anything constructive, bummed because it was such a beautiful day that it should be enjoyed outdoors, I'd slumped in front of the TV to watch Tiger.

Until the first ad came on.

Out of habit, I clicked over to Turner Classic Movies (TCM). There was Bette Davis in her prime (1939). There was Humphrey Bogart playing a supporting role and trying (not too successfully) to speak with an Irish brogue. There was future president Ronald Regan playing a spoiled-rich-boy drunkard.

Cool.

Except, Dark Victory is about a woman with a terminal brain tumor (a "glioma," according to the script), with 10 months to live. But, it's "a rare case. She'll apparently be as well as any of us - that is until - well, her sight may fail her near the end."

Davis then spends an hour-plus marrying the brain surgeon and waiting to die.

Very melodramatic.

But, not a good idea for an MDS guy who sometimes wonders about his own longevity—even if it was highly amusing to see Bogart struggle with his accent (been there, done that), and Regan playing to drunken type (if we'd've only known!).

When Davis starts to go blind, I was squirming. When she lay down in bed to die alone (she's sent everyone away), I thought "Jeez, what the f--- are you doing? Better to do something than to sit around getting all maudlin over terminal illness—even if Bette Davis's is remarkable in this film." (Her eyes were unbelievable; people would kill for eyes like that. Or, perhaps, endure a terminal brain tumor.)

So, I took my sorry butt down to the treadmill and jogged a couple of miles while watching Tiger demonstrate how golf should be played.

And, can you believe it?, somehow that was a whole lot more satisfying than watching Bette Davis wait around to die.

Good thing Tiger's back on TV today. And Bette isn't.

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: 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!