Tuesday, June 30, 2009

An MDS Patient by Any Other Name

Don't call me Ishmael.

Call me Schizo.

One day I'm up. Next day I'm down. Just like my blood count.

After I posted the blog yesterday, I went back to sleep for an hour. When I awoke, my exhaustion had disappeared. So did my glum mood. Go figure. Then I went to see Dr. Onco and her needles.

Yesterday's count: platelets, 109,000; hemoglobin, 12.3 and holding steady.

This is good, Dr. O declared.

Then, I inquired, why have I been so tired? Exhausted, actually.

She offered no answer. Apparently I'm supposed to be tired during the injection cycle, not after it.

With no further explanation she jabbed me twice and sent me and my revitalized blood count on our way. The count should now go down, and I should grow weary over the next few days.


Last time, I was fine for two days, tired for two, and about normal for the remainder of the process. Figure that out.

Still, my daughter tells me that this count indicates more than improvement. It shows—through a significant but not radical platelet increase—that the drug is likely to be working.

True enough. But, this up-and-down is different from golf. There, a successful up-and-down means good recovery and probably par. Here it drives a sane man crazy.

So—call me Schizo.

"Now that you're count's over 100,000," the knowing daughter advised (ordered?), "get on your bike and ride it. While you can."

Maybe I will. Who am I to ignore the sage I've raised?

Monday, June 29, 2009

MDS: Vidaza - Round 3

Today starts the third round of Vidaza shots. Frankly, I'm stressing.

Because we skipped last week's blood letting, uh, I mean blood testing, I have no recent blood count results. The last two counts were down from the two previous ones, although the last one was slightly up from the next-to-last count.

Dr. Onco has said that it's normal for the platelet count to go down during Vidaza sessions. Afterward, it should rebound.

The count also rebounds when Procrid is injected. But, she didn't administer Procrid last time, which may partly explain why the counts had gone up only slightly two Fridays ago.

What I do have is three straight days of exhaustion. Exhaustion, not fatigue.

Sleeping has been the primary pastime since we returned from Cape Cod, and I'm concerned. Seems to me that by yesterday (Sunday) I should've been fairly functional. But, I dozed through two televised baseball games and a golf tournament.

True, I managed to get on the treadmill each of the last two days. But, that required undue determination, and it pretty much represented my total physical output for each day.

Put together the exhaustion and last week's missing blood counts, and it adds up to worry. Well, concern at the least.

What will today's blood count show? Somehow this count looms menacingly and I'm feeling the pressure. Too much, so, I'm afraid. But, there it is.

And, frankly, as comfy as our Temper-Pedic bed might be, I have no desire to spend the rest of my life sleeping.

Saturday, June 27, 2009

MDS: On Overextension—How Quickly Can I Rebound?

We successfully returned from Cape Cod on Thursday. I devoted most of Friday to napping and trying to nap.

Luckily, a replay of the Mets actually winning a game was showing on TV, which served throughout most of the afternoon as both lullaby and reassurance. (There’s something calming about watching a ball game whose outcome is positive and known. No pressure. No anxiety.)

Today, Saturday, I’m semi-functional.

So, once again, the hard lesson is being brought home: it now takes at least a full two days to recover from overextending myself. Somehow I guess I’m going to have to absorb and remember this lesson. Denial can only take a person so far.

Still, overextended or not, the trip was worth it. It’s becoming obvious that, during in the past few months, I’ve been spending too much time at home without deadlines or anything much pressing to do, which only fuels the fatigue.

And, fatigue fuels discouragement, making everything seem more difficult.

As much as there are real physical aspects at work here, it’s a head game, this dealing with MDS. And, I’m still working on getting my head around it.

But, it’s a small head, after all (with such limited brain capacity!). So, we’re confident that some semblance of mental and emotional mastery will prevail at some point.

Friday, June 26, 2009

Cape Cod—An Elixir for MDS

Is playing golf in the rain advisable for an MDS patient?

(Is it advisable for anyone, for that matter?)

After all, the MDS gurus warn against contracting the flu and other infectious diseases. Surely catching cold is frowned upon. And didn't your mother join the cliche chorale, threatening "you'll catch your death" if you played in the rain?

She did.

But, here's what Mom didn't understand. Getting out of the house, being physically active, and socializing with old friends and meeting new ones are more than vitally psychological important.

They're necessary.

A little precipitation shouldn't be permitted to dampen that effect. It merely adds a dimension to the mix.

A steady drizzle engulfed the Falmouth Country Club on Wednesday when my ski-writing colleague Sean and I teed off. We were among only a handful of fools who thought that a light rain was—given the torrents that had fallen in recent days—tantamount to clear skies.

I played my usual game: some excellent shots, many horrible ones; some holes scored well, many holes a joke.

No matter. By the third hole the drizzle dissipated, the rain jackets came off and conditions improved. No, the sun didn't appear, and the excessively wet ground took away a key part of my game—hard-hit ground balls that roll long distances. (Yeah, sure, I know, you're supposed to hit the ball in the air; uh-huh.)

But, wet ground was a minor obstacle. For me, the diversion was the thing.

Indeed, the entire voyage to Cape Cod provided an elixir, affording an energizing psychological break from the in the shut-in life I seem to be leading lately, broken mostly by doctor's office visits. That Sean and wife Verna are wonderful people and great hosts added to the boon. And, that Penny doesn't mind if I disappear for four or five hours to chase a little white ball also helped.

Still, there was more to it than wet golf.

Wandering Provincetown's shops and galleries while dodging rain squalls, exploring the Cape Cod National Seashore in 50-mph wind gusts, and gobbling great quantities of locally made ice cream while moaning about how we can't eat another bite all helped to put MDS on a back burner for a while. So far back that, mentally, it became a non-factor for a few days.

And isn't that what vacations are supposed to be all about?

Now I'm ready to face Vidaza Shots—Round 3 beginning on Monday. Bring it on.

Tuesday, June 23, 2009

MDS: Traveling Again

Wife accompanied him on vacation trip.

Mashpee, Mass., June 23 (Kaplan News Network)—Reliable sources on Cape Cod yesterday indicated that MDSMitch's first post-MDS-diagnosis foray into the world of travel is going well.

The weather is not.

Amidst winds gusting to 40-MPH and rains of intermittently torrential proportions, the patient was seen arriving by car, accompanied by his wife Penelope. "They pulled up next to us when we were waiting at a stop light," said one area resident who asked not to be identified so as to avoid being overwhelmed by over-zealous reporters and paparazzi. "He was driving. She was in the front passenger seat, drinking an iced coffee from Dunkin Donuts. They both looked fine."

The area resident further reported that the patient "showed no sign of wear and tear from making the five-hour drive."

The actual drive time was recorded at five hours and eight minutes.

The patient's New Jersey neighbors noted that Kaplan and Kaplan had gotten a reasonably early start, departing Fair Lawn at 9:30 a.m. after loading two small suitcases, a back pack, a three-bottle wine tote, a soft brief case and a bag of books-on-disk into the car. A golf bag and golf course pull cart were stowed in a Thule automobile rooftop cargo box.

"Leaving at that hour was a smart move," a noted traffic analyst noted. "It allowed them to avoid rush hour back-ups on the Tappan Zee Bridge, and gave them pretty clear sailing along I-95."

Two brief breaks at roadside rest stops were carried out without incident. No injuries, medical emergencies, immune-deficient episodes, marital discordances or indigestion from a picnic lunch were reported.

Mashpee, Mass., area medical facilities are said to be on alert for any MDS-related exigency. "We're prepared to help," said one man thought to be a health care worker as he exited a McDonald's adjacent to a doctor's office of some kind. Asked what sort of medical exigency might be encountered in such a situation, he replied, "Oh you know, unexplained bruising or brooding; or, nap-deprivation syndrome."

Meanwhile, the weathermen, assisted by pretty young female TV weather readers, were distressed to describe the ongoing meteorological situation on the Cape.

"Rain, rain and more rain," said a television meteorologist who could not be identified due to the pronounced precipitation. "And lots and lots of wind," added his attractive, young female colleague as her long blond locks shot straight out behind her during an intense and wild gust.

"The weather sucks, and MDS-M isn't too happy that his projected golfing is being jeopardized," said a Kaplan spokesperson, who asked to remain unnamed because he doesn't actually know the patient, "but he's happy just to be out of the damned house and traveling again."

Sunday, June 21, 2009

MDS: Stability, Please

Latest blood count: platelets 79,000.

This is:
  • up from last week
  • normal progress and encouraging, according to Dr. Onco
  • still below the magic "you can do any activity you want" 100,000 mark, as defined by Dr. MDS
  • thus, still discouraging to me
  • and confusing to me—why were we once at 145,000+ and now hovering so much lower?
To answer the last point, it could be that the Procrid I was given, which stimulates bone marrow activity, had spiked the count. But, Dr. O declared that I don't need Procrid right now.

Even so, this count turmoil unnerves me a bit. I feel like a TV doctor watching a person's ECG or EKG read-out spike and dive repeatedly, and I don't like it. I'm looking for stability.

Then again, who isn't?

Thursday, June 18, 2009

Happy Birthday

Turned 61 yesterday.

Let me ruminate on the number 61 for a moment. What does it mean?
  • The number of home runs Roger Maris hit in '61.
  • Losing my life savings (about $15) betting on the '61 World Series.
  • Watching in despair as the football Giants get creamed in the '61 NFL championship game.
  • Highway 61 Revisted by Bob Dylan.
  • How old my big brother was four years ago.
  • The number of shots it takes me to play nine golf holes.
  • The approximate number of days it's been since MDS was diagnosed.
  • Route 61 is a trolleybus route in Bucharest. (Okay, I didn't actually know this. I just found it on Wikipedia.)
So, how was 61 celebrated?
  • Vacuumed the house.
  • Installed the new dehumidifier.
  • Renewed two medication prescriptions.
  • Worked for an hour.
  • Napped for an hour.
  • Treadmilled for 45 minutes.
  • Laina brought pizza for dinner.
  • Laina took me out for seriously good ice cream.
  • Successfully ignored my medical condition for an entire day.
Don't tell me I don't know how to enjoy myself.

Okay, I confess—we did have a major go-out-for-dinner birthday bash last Saturday (which also involved seriously good ice cream), before which many amusing and some useful presents were opened.

Still, I do wish I'd've been able to spend yesterday involved in my favorite birthday pastime/tradition: re-playing the Giants winning the Super Bowl. Sure, that's been possible only three times. But, nonetheless, Icount it as a tradition.

Maybe next year.

Wednesday, June 17, 2009

MDS: On Alternative Medicines

Yesterday I mumbled on with thoughts about pineapple and pills. Today, I find myself ruminating on alternative medicines.

A Web search by Penny gave us a site called Myelodysplastic-options.com, which is apparently offered by something called The Society for the Promotion of Alternative Health (SPAH) of London, England.

The site shows a chart that’s supposedly imparts a "detailed comparison of the most effective Myelodysplastic Syndromes treatments available in alternative medicine."

All it does, however, it generate confusion by obtusely "ranking" three products.

Oh, and it also offers links to the products’ Web sites where, of course, one can read magnificent claims for each product, such as
  • the most proven, effective, safe and easy to use product for healing Myelodysplastic Syndromes,
  • the world's most relied upon and clinically proven natural treatment for Myelodysplastic Syndromes . . . a completely outstanding product and there is absolutely no alternative to its unique formula.
But, even a thorough exploration of these sites yields no information as to what the "results" actually are. The products "treat" MDS? What does that mean? Especially when the MDS medical community says definitively that, with the exception of a successful bone marrow transplant, there is no cure.

Is it also significant that all three of these "recommended" products are European?

It’s tempting to think you can down an herbal pill and find yourself magically healed. Very tempting. One begins to understand why people grab at such alluring straws in hopes of finding cures to diseases.

But, in the name of science, if nothing else, I remind myself to limit the variables. I could discard skepticism and give into the herbal remedy temptation. But doing that before we have any real understanding of Vidaza’s effectiveness—even if the herbals were working—we’d not know which medicine to credit with the success.

Even a D-grade science student like yours truly knows enough not to muddy the waters with multiple variables. So, enticing as these "cures" may be, we’ll stick to being Vidaza needle-stuck.

For now, anyway.

Tuesday, June 16, 2009

MDS: On Pineapple & Pills

Yesterday we wondered about pineapple and its possible medicinal use with MDS, particularly why fresh pineapple was useful but canned was not.

Some backgrounding by the crack MDSMitch research team reveals that pineapple contains an enzyme called bromelain. This element is described by WorldHealth.net as "a proteolytic enzyme (an enzyme that digests proteins) [that is] a natural anticoagulant that works by breaking down the blood-clotting protein fibrin . . . There is also evidence that bromelain can trigger beneficial changes in white blood cells, and thus may improve immune function."

Apparently, the heat required to can pineapple kills the bromelain. Thus—the admonition to use fresh not canned fruit.

But, even though yesterday's MDS Nutritional Counseling reported fresh pineapple as anecdotally beneficial for raising and stabilizing platelet count, Grandma Ruth (Penny's mom) rightly and quickly pointed out that a blood thinner is not something you want to be ingesting when your platelet counts are low and your clotting efficiency is already compromised.

Forget the all-pineapple diet for now. We'll go with grandmotherly wisdom on this one.

We are beginning a V-8 juice regimen, however. Laina showed up at the doorstep last night toting two huge bottles of the stuff. V-8 might not be juiced kale, spinach, various grasses, etc., but it'll have to do as a supplement to the daily pill regimen.

Currently, the day begins with a Synthroid aperitif, followed at breakfast by a pill cocktail comprised of two Metamucil capsules, one multi-vitamin pill, two tabs of acidophilus, a vitamin D pill and a magnesium tablet. Evening brings two more Medemucils.

And, of course, one week a month we add a combo Vidaza and Zofran luncheon zinger.
  • The Synthroid was prescribed by Dr. Thyroid, who also prescribed the vitamin D, although we're not sure why.
  • The magnesium is self-prescribed to ward off muscle spasms of the feet, as recommended by cousins Berlie and Paula.
  • Neighbor Yael, an acupuncturist among other things, advocated the acidophilus back when we thought the diagnosis was ITP.
  • The acidophilus and Metamucil, self-prescribed to counter the colon-clogging effect of Vidaza and Zofran, seem to be helping the lifelong cranky digestive tract behave better. I'm just gleeful that we discovered Metamucil capsules so I needn't drink that stuff two times daily.
So, I've evolved into one of those aging guys whose daily routine revolves around pill-popping. I envision traveling with an entirely separate pill-bearing suitcase, no doubt incurring an airline extra baggage fee when flying.

Oh, and I forgot to mention the nightly sleeping pill-Tylenol -saline nose drops bedtime routine.

Does any/all of this truly help? Who knows. It's enough for a boy to simply keep track, no less worry about efficacy.

Down the hatch!

Monday, June 15, 2009

MDS: Doin' What I Can

I'm reading on Swedish.org that, for my best health, I should be exercising to whatever extent I can. But, the rain continues. Seems it's been raining for more than a week, making it difficult to get outside. I've been walking/jogging on treadmill as best I can. Still, you've gotta face it—even for a compulsive runner/jogger/exerciser like me, the treadmill gets tedious.

More so if you've spent all day home alone, ostensibly working, more often napping, with only the occasional phone call or batches of e-mail to offer contact with the outside world.

Or, on certain days, trips to the doctor for shots or blood-counting. In some ways, the exercise doesn't seem to matter.

Glancing at
myself in storefront window reflections, or in photos like this one, I'm still seeing that prednisone belly.

w to rid myself of that?
How to jog longer, faster?
How to graduate from walk/jog to running?
How, more importantly, not to get sucked into false hopes?

An e-mail arrived
yesterday promoting acai berry pills as a weight-loss wonder that might even kill leukemia cells. Oh, you can immediately feel yourself clutching to an idealistic hope.
  • Maybe this will give me more energy.
  • Maybe this will augment the medications.
  • Maybe this will at least eliminate the bowling ball belly.
Until you read this: Acai Berry Scams. So much for that idea. Instead you turn to this: MDS Nutritional Counseling. And, you ask yourself
  • Will I actually buy a juicer?
  • Will I actually buy carrots, broccoli, spinach, asparagus, turmeric, ginger, kale, beets, apples, pears, kiwi and any other fruits I wish?
  • Will the juice taste as terrible as it sounds?
  • Will I actually make/drink all that juice?
Doesn't seem likely.

Maybe I'll just stick to V-8.

Or, as the article suggests, eat pineapple.
But, when an article—even one from a bonafide, reliable source—says things like "If your form of MDS involves low platelet counts, we encourage you to eat fresh pineapple. Canned pineapple is not the same!" you have to wonder.

I mean, if the fruit has a beneficial effect, what difference does fresh vs. canned make? And, if there is a difference, why not spell it out?

Oh, well. Yesterday, Penny and Leena (a.k.a., Laina-the-Elder) dragged me to the Bronx Botanical Gardens to see the roses. We must've walked a coupla miles. Then, in the late afternoon, I put in 30 treadmill minutes. Tomorrow, if it ever stops raining, I'll walk 9 holes of golf.

Just doing what I can.

Saturday, June 13, 2009

MDS: The Chorus of Little Voices

"Your platelets are down a bit," Dr. Onco said yesterday.

"To what?" inquired I.

"Sixty-five thousand."

"Say what?"

Going from 145,000 to 65,000 sounds like more than "a bit" to me. But, Dr. O assured me, this was not unusual during and right after the Vidaza injection sequence.

"It is a form of chemo, after all," she said, as if that excused/explained everything.

Well, at least the hemoglobin and white cell counts remained pretty constant—and good.

Still, this up-and-down count of a blood element about which I'd known nothing just three months ago can be disconcerting. The little voice in my head keeps insisting that "this should be fixed by now." Of course, the little voice knows nothing—same as me.

How can I convince it that it will never be "fixed"?

And, that's not the only little voice. A Chorus of Little Voices is babbling in the background like crickets in the night. The most vocal voice despairs that anything (and everything) is connected to MDS and/or Vidaza.

A fluid-y lump has appeared on my right elbow. It's not painful, but is a bit obtrusive. I have no idea from whence this bubble has come (no bangs, knocks or over-exertions are recalled).

No matter, the Little Voice of Panic jumped to the front of the Chorus of Little Voices and began to nag.

Could this a reaction be?
To Vidaza?
To low platelets?
Or to all three?

It's none of these, Dr. Onco insisted. It's fluid in the bursa sack, a kind of bursitis. Probably from playing golf.

Okay. Sounds fair, even logical, although it's been two weeks since I played golf.

But the Chorus of Little Voice chants on.

About every little thing.

Each voice intoning its specialty:
  • Sneezing
  • Coughing
  • Itching
  • Aching
  • Sleeping
  • Not sleeping
  • Doubting
  • Fearing
  • Wondering why the Mets can't win.
Enough! Enough, I say to the Voices.

Do they listen? Of course not. They're generating too much noise babbling at me to hear me. I need Judge Judy to come and gavel myself to order.

Thursday, June 11, 2009

Suddenly Awake

I noticed something funny this morning about 10:30. I was working away, minding my own business (actually, trying to take care of some business), when it suddenly dawned on me that ...

I wasn’t tired.

Indeed, I’d spent nearly two hours plugging away at some frustrating Web-based tasks without a pause, and not once did I feel overwhelmed, disheartened, sleepy, slug-like, or otherwise burdened by the veil of fatigue that’s been covering me the last week-plus.

I was downright alert.

What an odd feeling.

I hope it continues.

Wednesday, June 10, 2009

MDS: A Cranky Boy

The fatigue is beginning to get me down. It's difficult enough to get one's head around the idea of being shot up seven times once a month forever, but having the medication render one near-useless due to weariness is just downright discouraging.

The least I'd like to see is enough energy to be productive.

I do remind myself that this round of shots was the first without competing medications, and that I may be more energetic during the interim three weeks. I certainly hope so. There's just too much downright annoying stuff on TV to constantly use the tube as background noise for sleeping most of the day. And, one certainly doesn't want to be annoyed on top of being tired.

There's a mathematical formula for that: A+F=Cr.

Annoyed + Fatigued = Cranky.

And, face it, nobody wants to hang around someone who's cranky. Cranky kids are sent to time-out, or even to bed.

And, I'm already spending way too many hours in bed, so where are we going to send me if I'm going to be cranky? Shopping?

Oh no! Not that! I'll be good, really I will!

As soon as I get a few more hours' sleep.

Tuesday, June 9, 2009

Vidaza Shots: Round II

Round II of the "shots heard 'round the world" is now over. Well, maybe "the shots heard 'round the block." I'm sure the neighbors can hear me moaning over my aching arms.

The going got tough during the beginning and end of this series. Spent most of Monday sleeping, as did I on Saturday—and on Monday again. I sincerely hope this doesn't represent a trend in which I'm going to lose basic functionality for 7-10 days a month.

It's also hard to imagine that my arms can sustain this kind of needle attack month after month. Last night I had to keep them akimbo, away from my body, lest the contact cause sandpaper-like aggravation. Walking around with my arms held out, I must've resembled a scarecrow.

Cast me in the Ray Bolger role in The Wizard of Oz.

There have been, however, some proverbial victories over the mundane:
  • took all the shots in the arms; no leg shots required
  • bruising from the shots is much less
  • blood counts are sustaining normal/low-normal levels
  • finally conditioned myself to remembering to take the Zofran, the anti-nausea meds
The drugs create an interesting, but all too typical, medical dichotomy.

Vidaza is known to cause diarrhea.

Zofran is known to cause constipation.

Do they cancel each other out?

Hard to tell. But, I'm eagerly ingesting Metamucil gel caps in hopes of maintaining some balance.

Well, maybe I shouldn't say "eagerly." Really, now, who eagerly consumes Metamucil?

Oh, and then there's the daily dose of acidophilous that I've self-prescribed. (In case you haven't been watching daytime or late-night TV lately, "probiotics" is the latest rage and all kinds of probiotic foods are being advertised as "promoting digestive health.") Leave no stone unturned, say I. Or pill unswallowed.

Altogether, the digestive processes seem to be functioning more or less okay, so I guess I'll keep the pill-downing routine intact.

Whether all of this will keep me intact is a whole 'nother issue.

Sunday, June 7, 2009

MDS: Am I Elderly?

This age classification thing has been bothering me for a while. Almost since this MDS business started.

In the medical literature, anyone over the age of 60 is referred to as "elderly."

I resent that position.
  • I don't feel elderly.
  • I don't act elderly.
  • I don't think elderly.
  • Despite the white beard, I don't look elderly.
  • I am not elderly.
After all, isn't 60 the new 40?

I can only conclude that the MDS medical studies are being carried out by an army of 20- or 30-somethings who have no concept of age beyond their own. I'm sure they can't imagine their beautiful red beards turning white. Or their ability to quickly snag hard hit grounders at third base dissipating.

May they live long enough to have it happen to them.

Age, it's often said, is how you perceive it; how you act. If I'm still out there skiing bumps and backcountry extreme terrain, am I elderly? If I'm skiing with colleagues who are well into their 80s, does that make me elderly by association?

Okay, so I can't bend over and touch my toes. Does that lack of flexibility make me elderly? Guess what: I've not been able to touch my toes since I was 16!

Seems to me that being diagnosed with an obscure syndrome that's only vaguely understood is bad enough. No need to add insult by referring to me as elderly.

I mean, when Dr. MDS called me "young" for the disease, I was almost ecstatic—even though he was simultaneously telling me that there is no cure.

I don't know at what age you qualify as "elderly." But, it isn't now for me. No matter what the medical pundits say.

Hell, I won't even be elderly in two weeks when I turn 61.

So, there!

Friday, June 5, 2009

Dear Diary

Dear Diary,

What an up-and down week it has been. First, on Monday, I felt like a bag of manure all day. Aches, pains, slight nausea, stomachache, headache. It was worse than the symptoms I'd make up to tell my mom when I’d try to get out of going to school by claiming I wasn’t feeling good.

Oh my, I thought, if this is what Vidaza treatments are going to be like without prednisone to counteract them, I’m in big trouble.

But, Tuesday through Thursday were pretty much fine.

Yet, here we are on Friday and I’m feeling like I’ve swallowed a horse tranquilizer. I slept right through almost an entire film on Turner Classic Movies. I hope Charlton Heston wasn’t insulted.

And, twice this week—Monday and Tuesday, actually—I forgot to take my anti-nausea Zofran before I left for Dr. Onco’s place. On Monday, I didn’t realize that I’d forgotten til I arrived at Dr. O’s office. Luckily, she had some stuff on-hand.

Tuesday, I was about a third of the way there when I remembered and, even though it meant I’d be half an hour late for my appointment, which meant that my father’s ghost was crying out in agony and anguish over such tardiness, I returned home to take the meds.

You see, I kept thinking the stuff Dr. O gave me on Monday wasn’t as potent as the stuff I have at home and that’s maybe why Monday was such a bummer. I wasn’t taking no chances.

Still—what kind of subconscious message was being delivered? How on earth could I forget the anti-nausea meds? Was this some kind of perverse, self-punishing denial I was suddenly thrusting on myself? Pointless rebellion? Arch stupidity?

Oh, diary! How could I be such a fool? Why would I subject myself to the horrifying prospect of projectile vomiting? What can it mean? Was I unknowingly hoping to get into the Guinness Book of Records for distance and accuracy?

Now, a large, hand-written sign is posted on the front door to remind me. ZOFRAN!!! it says. If I can walk past that one, then either I’m going blind or I’m truly a masochist.

I mean, really Diary, can you imagine?

And, Diary? Thanks for listening.

Thursday, June 4, 2009

MDS: Another Form of Perspective

Yesterday, I was reading the latest edition of the PSIA-E newsletter. (That’s the Professional Ski Instructors of America - East, for those for whom the acronym means nothing.)

Among the ski and snowboard teaching tips and the chatty news about members’ accomplishments and get-togethers, I came across an "In Memoriam" page. Eight ski-snowboard instructors were memorialized on this page, none of whom I knew.

But, here’s the shocker. Among the eight, there were the following ages at time of death:
  • 51
  • 60
  • 56
  • 62
  • 62
  • 56
Wait a minute. These guys (and they were all guys) were longtime snowsliders and snowsliding instructors. By implication, active people who were in good shape. I mean, I’ve never known a ski or board instructor who was overweight or out of shape. So, why were they dying so young?

The only cause of death noted was one—a motorcycle accident. The rest? No matter, reading this gave me pause.

These guys were my peers.

Maybe I really should take to heart what my wife and daughter (among others) have been telling me since this MDS adventure began: none of us knows how long we have to live, so we all should be making the most of it.

Okay—so it actually looks like I’ll never be six feet tall. I’ll never play major league baseball. I’ll not write the great American novel. Chances are I’ll never shoot par, date a super model, swim the English channel or sleep with as many women as Wilt Chamberlain (thousands, he claimed).

Guess the time has come to accept these things as fact. And that time allotted is what it is.

So, I will make the most if it. Even on days like two days ago, when I felt like doo-doo, I’ll immerse myself in feeling crappy. No point in half measures.

But, there really never has been, has there?

Wednesday, June 3, 2009

Feeling Bad

Wow. Now I'm feeling really lousy. Couldn't do anything yesterday but complain and sleep. In that order.
  • Tired
  • Aching
  • Nauseous
  • Tired
  • Headache
  • Stomach Ache
  • Tired
  • Irritable Bowels
  • Tired
Guess that prednisone was masking a lot of these side effects. Kind of wish it were still doing that.

Never thought I'd miss that stuff.

Hate to think this is going to be the monthly routine—feeling like a bag of sh– for a week of every month doesn't portend good things.

Oh well. Today's another day, and maybe I'll fare better.

Pass the syringes, please.

Tuesday, June 2, 2009

MDS: So Tired

Today fatigue has set in. Too much weekend? Or, a reaction to Vidaza? Who knows.

My mother used to chide me when I was a kid. She'd say, "You're tired, but if your friends came by and wanted you to play baseball, suddenly you'd have lots of energy."

'Fraid to say, she was right.

So, if my friends came by right now and wanted me to play golf or go skiing, would I suddenly have lots of energy?


Still, it's hard to judge what's happening, especially day-to-day. And, when you're tired, it's difficult to be upbeat.

Yesterday, entering Dr. Onco's office building to begin the second round of Vidaza shots, I paused. "Am I really going to be doing this—showing up here seven days a week every month—for 10 or 20 years?" I wondered.

"You should only be so lucky," I responded to myself.

Feeling sorry for myself? No, not really.

Feeling intimidated? A bit.

Mostly, however, feeling tired. It all seems so uphill.

"You won't be doing this for 20 years," said my spouse when I told her what I'd been thinking. "By then there'll be other medicines and treatments."

So, too, say Dr. Onco and Dr. MDS. New meds are just over the horizon.

I choose to believe the docs. And, I choose to believe I'll be around to use the meds.

I just hope I don't sleep through the whole thing.

Monday, June 1, 2009

Vidaza - Take 2

Today begins the second round of Vidaza shots. My arms are already aching and turning black-and-blue just from thinking about it.

And, of course, I’ve been reminding myself every 15 minutes to remember to take the anti-nausea meds.

Just thinking about potentially being nauseous makes me nauseous. Suggestion truly is powerful.

Am still trying to get myself to understand that, no matter how well this Vidaza works, it doesn’t cure the disease. Actually, I’m still trying to convince myself that this is a disease. And, that I actually have it.

Sometimes I forget I have it. Sometimes I remember.

Penny and I are planning some trips for this summer, and it the idea of traveling excites me. But, semi-consciously I’m hesitant. Doubt creeps in about
  • whether a trip will interfere with the meds schedule
  • whether I’ll have enough stamina
  • what happens if I suddenly fall ill and the blood counts plummet
  • whether doctors in exotic, faraway lands (like Maine, or California, say) know about MDS
  • whether every germ in the universe threatens my health and happiness
  • whether true happiness really exists
  • whether, if it does, I can experience true happiness, given my father’s genetic legacy
  • whether happiness truly is, as Charlie Brown said, "two kinds of ice cream"
  • whether...
But, I digress.

If what it takes is shots, I will dutifully go for my shots today. And every day this week. And every week at the beginning of every month this year. And every year for, well, let’s hope for many years.