MDS: This Shots Week Stinks

Whoa! this Shots Week has begun poorly. Have been feeling on Tuesday as tired, constipated, achy and cranky as I expect to feel on Friday or Saturday.

Slept for—count 'em!—12 hours Monday night. Woke up just as tired and useless as when I went to bed.

What's that all about?

Naturally, speculation runs high in my tiny brain. Could it be

• that we had an extra week between Shots Weeks due to the bone marrow biopsy, so I was reacting more strongly to the Vidaza?
• that I'd had too much weekend (golf Friday, wedding and poor night's sleep Saturday, no real naps Thursday through Sunday)?
• worst—that the blood counts were down?

Wrong on that last count, anyway. Yesterday's counts:

• Hemoglobin—12.4
• Platelets—118,000.

Well, that's good news, anyway.

So, here it is Wednesday morning, after another long sleep night (9 hours), and the fatigue factor carries on. The old TV ad for Geritol is running through my head: "tired blood."

Tired of tired blood might be more like it. Also, tired of bowels acting like a recalcitrant two year-old. They won't move even though they know that want to, have to, need to.

Pass the prunes.

MDS: Under the Curtain of Fatigue

Everything looms larger when you're tired, my old mum used to say.

She got that right.

Here we are, five Vidaza shots into the current seven-shot cycle, and it feels like I'm carrying a 10-ton weight around on my back, complemented by tiny, but densely heavy, weights attached to my eyelids.

Talk about tired.

When you can sit at your desk working only for an hour or so, and then your head hits the desktop like its being pulled there by a mega-magnet, that's tired.

When it's all the energy you can muster to thumb the TV remote's buttons, but you don't have the patience to sit (lie?) through anything that appears on the screen, that's tired.

When climbing the stairs to go to bed seems like an Everest ascent, that's tired.

Dr. O says that her other MDS/Vidaza patient (and I think there's only one) reports serious fatigue setting in after the third shot. I'll second that.

It's a good thing I played golf on Tuesday, after Shot Two, and before this curtain of fatigue settled over me.

Perhaps the exhaustion is intensified by its contrast to last week's energy, which was high for me, even relative to the pre-MDS days. It strikes me that it's like driving a car with a very sticky gas pedal: push down hard and you jerk immediately high-speed; let up, and you stall out.

I was revving up pretty good, last week. This week I'm sputtering at best. Can someone call the AAA for bedside assistance?

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.

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.

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.

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!