Thursday, July 30, 2009

MDS: In Praise of Napping

A quick digression from the daily MDS rant. In today's New York Times there's a short piece about napping.

Apparently I'm not the only one outside the Latin American countries who's doing it.

Even so, I contest the article's contention that most nappers are earning little money, are unemployed and are unhappy. Methinks that nappers are:
  • smart
  • hard working
  • early-risers
  • tired.
Especially smart.

Wednesday, July 29, 2009

MDS: Traveling & Napping—It's a Challenge

Maintaining a sane sleep and activity schedule has, to date, proven vital to managing this MDS. This management, naturally, integrates one of my all-time favorite activities into the daily routine—napping.

Not that I didn't nap before MDS set in. I've long been a napper. But, the MDS now provides a ready excuse to call a time out and declare a siesta.

Self-disciplining a nap time into the day is easy at home. I mean, there's nobody around to distract or dissuade me.
On the road, it's different.
  • Firstly, we tend to cram in as much activity as possible when playing tourist.
  • Secondly, we tend to get lost whilst doing that and, as such, self-imposed schedules often get tossed out of whack.
  • Thirdly, the weather often forces activity changes.
  • Fourthly, if one must daily return to the motel, lodge, B&B, hotel or resort, one can't stray very far from it.
(Especially when the B&B serves breakfast at 8, in quantities large enough, and delicious enough, that it takes an hour to eat. Forget about an early start.)

So it was Monday, a morning of intermittent rain and pervasive fog. We departed for Acadia well towards 10, spent two hours driving there and visiting the Visitors Center, and another hour-plus driving the Park Loop Road.
  • We tried to hike a bit but, just at that moment, the rain arrived in earnest.
  • We tried to lunch at Jordan Pond, famous for its popovers, but the wait was long—unless we wanted seating outdoors in the rain.
We then spent another hour-plus traveling to Bar Harbor and seeking the College of the Atlantic where, it was rumored we could get a unique and delicious lunch. After half an hour wandering the (admittedly tiny) campus, we finally found the lunch hall only to discover
  • a) we were too late
  • b) and, anyway, they don't serve the public in summer—only day campers.
By now the rain had stopped, and we were starving. We managed to find feed on the outskirts of Bar Harbor at a place called the Acadia Café, which serves only breakfast and lunch. We just made it. They locked the door behind us as we departed.

Now what? By the time we returned to the B&B, it would be too late to nap. And, besides, the sun had come out.

So? Shop.

An hour-plus was devoted fighting the downtown Bar Harbor traffic, finding parking, and wandering Main Street and the waterfront, including waiting 10 minutes on line for an ice cream (it wasn't me!), another 10 minutes lost-time trying to find a church with Tiffany windows (I remembered wrong where/when we'd passed it), and finally an two hours driving in search of, and visiting, a place called the Seal Cove Auto Museum, a remarkable gem filled with cars circa 1888-1915.

Finally, a return to the B&B was followed by leisurely pre-dinner wine sipping on the deck, and dinner.

What had happened to nap time? Gone. Vanished. Caput.

Come Tuesday (yesterday), we resolved to make nap time happen. And we did. From 2 to 3. And, we followed up that wise move with a night out at the local summer stock theater, which got us into bed 11-ish, and here I am at 6 a.m. working, which means whatever was gained yesterday at nap time has been lost over night.

To maintain honesty, since I'm a longtime, unapologetic napper, I can't completely blame MDS for screwing up my travel days. But, I can say this: it seems that the MDS allows for no more that two consecutive nap-free days. To try to do more means certain exhaustion for two or three more days.

It's a terrible burden, yes?, this demanding commitment to midday sleep. But, some rain or shine, or interesting pastimes or fascinating landscapes to explore, we must answer the call.

Today we nap.

Sunday, July 26, 2009

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.

Friday, July 24, 2009

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.

Wednesday, July 22, 2009

MDS: Vidaza and Reduced Blood Count Blasts

This week's good blood count got me to thinking (always a dangerous thing). A pattern does seem to be emerging: counts go down during Vidaza treatments, elevate a week and two weeks later.

We won't have counts for next week. We're getting the hell outta town and having a Maine vacation.

But, the new numbers and increased energy started me, with my usual trepidation, doing some Internet searching, where I discovered a recent press release.

It says that "VIDAZA significantly extends overall survival and helps patients with myelodysplastic syndromes (MDS) become or remain red blood cell transfusion independent. Patients who benefitted included those with higher-risk MDS or acute myeloid leukemia (AML) with 20-30% blasts, as defined by the World Health Organization (WHO)."

Now, I'm neither suffering from AML nor are my blasts at 20-30%— they're less than 5%.

(Blasts, by the way, are young blood cells that mature into red blood cells, white blood cells, or platelets. Excess blasts means an increased number of immature blood cells in the bone marrow.)

Okay, we already knew most of what the press release states because it confirms an earlier study. And, as has always been the case, the studies involved patients with worse situations than mine.

But, the idea that Vidaza might reduce blasts is encouraging.

The Vidaza Web site says of earlier studies that the major percentage of patients who responded when treated with VIDAZA achieved either a
  • Partial Response (PR): No blast cells in the bloodstream. The number of blasts in the bone marrow has been reduced by at least half. Blood counts (red blood cells, white blood cells, and platelets) are at least halfway between where they started (baseline) and normal. To be considered a PR, blood count improvements must be maintained for at least 4 weeks.
Or a
  • Complete response (CR): No blast cells in the bloodstream. The number of blast cells in the bone marrow is at or near normal. Blood counts (red blood cells, white blood cells, and platelets) are also at or near normal. To be considered a CR, blood counts must remain at or near normal levels for at least 4 weeks.
I'm scheduled for another bone marrow biopsy towards the end of August. The blast count will be of particular interest.

Meanwhile, the study cited in the news release carried on for about two years. I'm more than happy to continue doing what I'm doing for the next two years if that's what it'll take to see reduced blasts and increased platelets.

Who knows? Maybe my golf game will improve by then. Or, perhaps more likely (although not very probable) maybe the Mets and football Giants can win championships by then.

Do you believe in miracles?

Tuesday, July 21, 2009

MDS This week's blood counts

This week's blood counts:
  • Platelets - 117,000
  • Hemoglobin - 12.0
This is good. Up from last shot series' high of 109,000. So, the both the low and the high were higher this time around.

Dr. O seemed pleased.

I am pleased.

Could be that the Vidaza is doing what it's meant to do.

To that, I offer a qualified, cautious "Yippee!"

Monday, July 20, 2009

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.

Saturday, July 18, 2009

New MDSMitch Feed Now Comes Straight to You—Whomever You Are

Today will be brief. Am recovering from playing golf late. Stumbled through the last two holes. Then looked at the clock. 8:35 p.m. Jeez, we’d played almost til bedtime. No wonder I was tired.

Anyway, you can now track alerts for new posts.

I’ve deployed a widget at the bottom of this blog:
  • Scroll down as far as you can go.
  • On the Left, it says "Subscribe to: Posts (Atom)".
  • Click on that.
  • A new page opens that says "Subscribe to this feed using..."
  • If you choose "Live Bookmarks," a link to the blog will show up on one of the tool bars atop your screen.
  • Once installed, click on that link, and a drop-down menu will show you what’s current.
I made it work on my laptop. Who knows, maybe you can, too!

Friday, July 17, 2009

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.

Thursday, July 16, 2009

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.

Wednesday, July 15, 2009

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.

Sunday, July 12, 2009

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.


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!

Thursday, July 9, 2009

MDS: Too Busy- to Feel Bad?

A funny thing is happening.

Suddenly . . .

after a three-month drought due to illness and lack of energy . . .

I’ve got work to do.

Deadlines to meet.

Paychecks to earn.

So suddenly . . .

I’ve no time to dwell on health matters.

And, suddenly . . .

I feel better.

Go figure.

Tuesday, July 7, 2009

MDS: Numerically Optimistic

At some point during my collegiate years I came to a terrible realization: I was not the pessimist I prided myself on being; I was actually an optimist.

Blame it on too many Leave It To Beaver episodes. Or perhaps Ozzie and Harriet.

Either way—there it was. Deep down, no matter how gloomy I'd prided myself on being, I expected the positive outcome, the good ending.

Yesterday's blood count reinforces this perplexing outlook:
  • Platelets 98,000
  • Hemoglobin: 12.3
So, the red cells are holding their own, and the platelets, while down (as expected during Vidaza treatments), didn't sink much. A good sign.

Could it be that this semi-sadistic, needle-based medical ritual is actually working?

It's way too early to say. But, the little voice of optimism kicking around in my brain says, "Yes. Yes it could."

Of course, the paternally inherited genetic voice of doom bellows competitively, like a fire siren at an outdoor chamber music concert, "Don't be fooled! Numbers can lie!"

To which internal signal is a poor boy to listen?

Well, I emphatically say to the clamorous pessimist: "Oh shut up."

I'll go with the goody-two-shoes outlook on this one.

Monday, July 6, 2009

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!

Friday, July 3, 2009

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.

Thursday, July 2, 2009

On the Emotional Roller Coaster

I could always handle roller coasters. If I had to.

What I couldn’t handle was merry-go-rounds. Or anything that travels in circles.

So, I’m trying to understand why I’m having so much trouble handling the MDS roller coaster. One day you’re up. Next day you’re down. And it’s not clear what triggers the reaction.

Yesterday morning, as I bustled through rush hour traffic to be needled by Dr. O (she has no office hours on Wednesdays, so only we special guys get to see her; but, we’ve gotta show up early), an acute depression attack set in.

That lasted about 10 minutes.

During my needling session, I was chipper and happy.

Driving home, I again lapsed into solemnity. But, over lunch I was fine. Then, post-naptime, I backslid into grouchy morosity.

As might readily be imagined, this emotional circus confused and angered me. Get a grip, I told myself. Then, I said, "Ah, what the fu–-" and went to watch old football films on the NFL network. (This fiber-optic TV is great for distracting one’s self. Or, for wasting time. Depends on your interpretation.)

So, today I hope to divert the coaster off-track with golf. If the weatherman cooperates (sinister dude that he is).

Meanwhile, perhaps I should somehow mechanize patent this emotional roller coaster, and sell it to Six Flags as their next thrill ride.

No, wait. Six Flags just declared Chapter 11. They’re probably on an emotional roller coaster of their own. Never mind.