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.

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!

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.

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?

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.

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?

Probably.

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.

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.