Saturday, August 29, 2009

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.

Friday, August 28, 2009

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?


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 . . .)

Thursday, August 27, 2009

MDS: Bone Marrow - To Transplant or Not to Transplant

Questions have been weighing heavy on my mind lately. Perhaps it's because we're now a week away from the next bone marrow biopsy. Perhaps it's because I've been flying, which always stimulates in me philosophical wonderment (like: how can the air itself actually keep the plane in the air?).

No matter. I've been pondering some conundrums
  • How long will the Vidaza be effective?
  • What, if any, are the side effects of long-term Vidaza use?
  • How to decide whether to go ahead with a marrow transplant?
While I was out west, I conferred with my cousin Robert, a retired podiatrist who had a bone marrow transplant in '01, albeit for a different condition. The good news from his report:
  • the in-hospital experience wasn't so terrible
  • the recovery period didn't last nearly as long as Dr. MDS reported it would
  • Dr. MDS's stated failure rate and fatality percentage (40% and 15% respectively) are likely overly high, given my age and condition.
The bad news:
  • intense nausea and vomiting for 6 weeks or more
  • the procedure didn't work.
My spouse—ever the pragmatic one—dismisses the transplant at this stage, saying "if the Vidaza is working, let it ride." Her daughter agrees. (Okay, yeah, she's my daughter, too, but saying "our daughter" seemed less dramatic.)

My cousin Ken takes the opposite view: if it's the only chance for a cure, and the success/fatality percentages are probably better than what's been stated, you might as well go for it.

Cousin Robert, on the other hand, says don't do it unless you must.

So, I've been waffling back-and-forth, in some kind of semi-neurotic anticipation of the biopsy results which, rationally speaking is totally unnecessary and a waste of time and energy.

Decision-making has never been my forté.

Tuesday, August 25, 2009

MDS: Yesterday's Blood Counts

The wandering MDS patient returned yesterday to the beneficent oncologist after 12 days traveling for the blood letting—uh—blood counting ritual.

Yesterday's counts:
  • Hemoglobin: 11.4
  • Platelets: 103,000
Now this seems to me to be significantly down from the last counts
  • (12.4 and 169,000)
but Dr. O did not seem phased. "Your blood is looking good," she said, smiling as she emerged from the mysterious room wherein such numbers are determined.

"Those are lower," I replied cautiously when she reported the numbers. "Are they really okay?"

"It's the Vidaza," she reported brightly. "It makes the counts go down and then they come back up. Next week, they'll be back up, you'll see."

I hope so.

Returning to this ritual proved a bit strange, after missing it for what seemed to be quite a while but was really only a week. I guess it's an out-of-sight out-of-mind thing, but driving home I lapsed into rumination on vulnerability and remembering that I actually am supposed to be sick. I hadn't done that at all while traveling.

Perhaps I'm better off traipsing around the country being overfed like a cow being prepared for the stockyards. There, my consciousness is redirected to feeling over-stuffed and fat rather than ill.

Dr. O insisted cheerfully that we'll see higher blood counts next week.

Next week.

That's when I report for the next bone marrow biopsy.

Ah, the things we get to look forward to. Can't wait.

Monday, August 24, 2009

MDS Airplane Survivor

Home again. Home again, home again, home again, home. And, another airplane flight survived.

It's hard for a life-long beard picker (or, to be more kind in our nomenclature, let's say "beard stroker") to keep his hands away from his face for five hours—even if the airlines provides 40 movie choices, 150 CD selections, and a slew of video games and TV shows for distraction.

But, like a pair of mantras, the MDS advisories repeated in my head as the Grand Canyon, Rocky Mountains, Midwest farmlands and Smokies passed below us.
  • Avoid sick people.
  • Purell your hands often.
  • Don't touch that!
And, so the daughter and I passed across the country apparently without incident. That's to say, at least, I didn't awake this morning with any apparent illness.

Still, I don't like being in airplanes any more. Everywhere I look is a surface that blasts the "Don't touch that!" mantra at me. Every sneeze and cough within the flying tube carries overly ominous menace.

If I work at it, I could readily become a full-fledged hypochondriacal paranoiac who's ready to take up residence in a sterilized cube.

Or, I suppose, it might be more rational to relax and just keep flying.

Or, maybe I could borrow Dorothy's ruby slippers, and intone her mantra. There's no place like home . . .

It worked for her.

Sunday, August 23, 2009

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.

Wednesday, August 19, 2009

More MDS & Travel Fatigue Sets In

Five days on the road, and the message has been brought home once again—when traveling with Vidaza-treated MDS, you'd better schedule time for a nap.

Of course, it would be easier to handle the fatigue situation if this patient could sleep on airplanes. Unfortunately, the only time that's been achieved has been when flying internationally in first class cabins equipped with flat-bed seats. And, needless to say, that was only experienced on someone else's dime on a non-domestic airline.

So, flying from NJ to CA on Friday yielded no sleep.

And, charging from one family gathering to the next yielded no naps.

Thus, three days went by without naptime. By Monday, full exhaustion had set in and, after a half-day of sightseeing, this boy collapsed into mid-afternoon bed, passing out for a full 2-plus hours.

And still managed to sleep a full 8 hours that night.

Alas, yesterday, the vicious cycle began again. Even though the flying took only an hour, we'd left so much time for getting to the airport (stung by, and wary of, the horrendous Calif traffic), and we required so much time to get from the arrival airport to grandma's house (embroiled in Calif traffic), that naps weren't in the cards.

Today, however, will be a different story. Out of bed at an ungodly hour to complete an assignment due by mid-morning eastern time (no—I didn't wait til the last minute; the work came in whilst I was in flight on Friday; a very short lead time, indeed), I've completed the task and fully intend to sleep it off this afternoon.

It's clear that multiple non-nap days are not a god idea. Now, I just have to remember that—and so something about it.

Saturday, August 15, 2009

MDS: Dare to Fly

Yesterday I dared to board an airplane for the first time since the MDS was diagnosed.

Call me irrational, but this I regard as some kind of minor victory over the mundane.

I'd gotten sick two of the last three times I'd flown—the last having been the ill-fated trip to Minnesota in March that spawned the stomach virus that revealed the MDS. So, the idea of spending 5.5-hours confined in that metal tube at 35,000 feet with 200 germ-carrying others had spawned a certain level of paranoia in me.

I entered the vehicle armed with Purell, vowing not to touch any surface that wasn't absolutely necessary, and to keep my damned fingers away from my face (not an easy task for a habitual beard stroker).

I actually did pretty well on that last score; didn't poke at my own face hardly at all.

I didn't touch anyone. Nor did I touch anything. Never allowed my fingers to caress the silken seat cushions, nor to pound on the plastic drop-down table. Didn't even touch the ground with my feet as I walked down the aisle.

You think I exaggerate?

Okay, I do.

Still, here I am, typing this all the way on the other side of the country while showing no apparent ill effects from this milestone air travel experience.

Of course, whatever horrible bug was traveling with me might need a longer gestation period than one day to manifest itself. But, I'll remain optimistic for the moment. After all, I still must fly home in a week's time. And, who knows what kind of exotic West Coast germs are lurking here to menace me?

Wednesday, August 12, 2009

MDS: Please Don't Touch!

I've taken my MDS-rattled body with its Vidaza shots-riddled arms to Lake Placid, NY, for a meeting of ski writers.

Yes, ski writers do continue to live through summertime. Some even function with a resemblance of normalcy. Well, as normal as ski writers can be.

But, I digress.

Here's the thing. We all gathered at the Olympic ski jumping complex for a welcome barbecue and jumping demo. (Yes, these fearless folks can jump in summer—but that's a whole 'nother topic.)

And, of course, upon seeing many old friends and colleagues, there was much hand-shaking and many smile-filled greetings.

And, upper arm patting. And arm gripping, as folks offered a "Hi! How are you?"


But, these arms are shot full of holes and the residual bruises and soreness brought on by the Vidaza shots. Each touch is painful.

What's the etiquette in this situation? Does one

  • repeatedly murmur, "Don't touch the arms, please?"
  • wear a warning label on one's sleeve?
  • grin and bear it?

Worse, for those who don't know—or don't remember—what this boy is suffering, a greeting laced with a flinch, a grimace and a "please don't touch" warning then requires a lengthy explanation of the MDS condition. And that's not the kind of upbeat conversation that goes with a welcome barbecue.

Just another of the MDS life's little challenges. It may be tedious, but it isn't boring.

Sunday, August 9, 2009

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.


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.

Saturday, August 8, 2009

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?

Friday, August 7, 2009

MDS: Second Thoughts On "Nova" & Decitabine

Some clarification about yesterday's rant on decitabine, provided largely by my daughter, the scientific type, who came for dinner last night. And by her always-rational mother.

After some discussion about epigenetics, genetics, genes and chromosomes—little of which I really understood—some on-line research and a reviewing of the "How Does Vidaza Work?" video on, the daughter confirmed that Vidaza is indeed working in fundamentally the same way as is decitabine.

They both function by chemically altering the way in which a gene is functioning. Or, not properly functioning, in this case.

This makes me feel better on one level: I don't feel like I'm missing out on some miracle drug.

Online research also revealed that the medical community freely uses the word "remission," just as it was used in the TV program.

Not that that makes me feel like I'm in remission. I rather think of current state as "controlled," longevity unknown.

Still, if the docs and researchers want to call it remission, well, fine.

But, none of this information makes me feel better about the way in which "Nova" presented the section on MDS: glibly with an emphasis on near-miraculous results.

Well, hell. We all want to believe in miracles, yes? I mean, some of us are still basking in the results from two Super Bowls ago.

Misguided and/or false hopes are a whole 'nother thing, however.

Thursday, August 6, 2009


Last night I tried to use PBS's Nova to put myself to sleep (it often helps to have TV distraction to induce sleep by preventing me from thinking too much). The show was entitled Ghost in Your Genes.

The gist of the show is that something called epigenetics can affect health. Epigenetics is, in essence, chemical factors that cause genes to activate or not.

About two-thirds through, comes the following:

NARRATOR: This work is controversial. Still, many scientists now believe that epigenetic changes in gene expression may underlie human diseases.

Take a disorder like M.D.S., cancer of the blood and bone marrow. It's not a diagnosis you would ever want to hear.

Whoa! I'd seen this show before. Must've been before my diagnosis, because I had no memory of its talking about MDS.

But, hey—what kind of statement is "It's not a diagnosis you would ever want to hear"? That sure made me feel better (right).

The sequence continues:

SANDRA SHELBY (Medical patient): When I went in, he started patting my hand and he was going, "Your blood work does not look very good at all," and that I had M.D.S. leukemia, and that there was not a cure for it, and, basically, I had six months to live.

NARRATOR: With no viable treatment, Sandra entered a clinical trial experimenting with epigenetic therapy. It was the result of a radical new way of thinking about the causes of diseases like cancer. . . The trouble begins, believes Issa, when our stem cells, the master cells that create and replace our tissues, overwork.

JEAN-PIERRE ISSA: Every time a stem cell has to repair injury, it is aging a little more. And because each time a stem cell divides there is a finite chance of some sort of epigenetic damage, what we find is that in older people there's been an accumulation of these epigenetic events that is easily measurable in DNA.

Now where does the cancer angle come from? Well, if you count age as how many times a stem cell has divided, then cancers, which copy themselves tirelessly, are awfully old tissues.

NARRATOR: As epigenetic errors pile up, the switches that turn genes on and off can go awry, creating havoc within the cell.

ANDREW FEINBERG: There are genes that help to prevent tumors that are normally active that epigenetically become silenced. Those are called tumor suppressor genes. And there are other genes, called oncogenes, that stimulate the growth of tumors. And then the tags, such as the methylation tags, come off those genes, and those genes become activated. So both ways, turning on and turning off, is a way of getting epigenetic disease.

NARRATOR: But could misplaced tags be rearranged? In 2004, Sandra and other patients began taking a drug [decitabine] to remove methyl tags silencing their tumor suppressor genes. . .

SANDRA SHELBY: The results have been incredible. And I didn't have, really, any horrible side effects.

ROY CANTWELL (Medical patient): I am in remission, and going in the plus direction is a whole lot better than the minus direction.

NARRATOR: Roy has not been cured, but he has been cancer-free for two years. And he is not alone.

JEAN-PIERRE ISSA: Spectacular results—complete disappearance of the disease—can be seen in almost half of the patients that receive this drug.

What? Can this be true?

Probably not.

Consider the FDA's report on the medication's clinical trial:
  • "In the decitabine-treated group the median duration of response was 288 days and the median time to response was 93 days. All but one of the decitabine-treated patients who responded did so by the fourth cycle. Decitabine treatment did not significantly delay the median time to acute myelogenous leukemia or death (emphasis mine)."
Or, the trial's official abstract:
  • "Patients who were treated with decitabine achieved a significantly higher overall response rate (17%), including 9% complete responses..."
As an MDS sufferer, a couple of things are bothering me, here:
  • that the PBS show would so glibly glide over the topic, offering seemingly limited patient experience as near-definitive results
  • that PBS says 50% of patients, but the study says 17%
  • that maybe the Ghosts show is right—the stuff works
  • that nobody has talked to me about this decitabine
  • that I had no recollection of this sequence in the show because, I guess, then it didn't apply to me.
In this kind of health situation, it can be difficult not to hold out false hopes, or at least grab at straws, even if your current medication regimen appears to be working.
  • Does this drug really work?
  • Why haven't I known about it?
  • Is it better in some way than Vidaza?
  • Should I be on it?
It's the open-endedness of the situation (How long will this Vidaza actually be effective?) that leads to these rather irrational thoughts. One always hopes for resolution/cure.

Still, I'm gonna have to ask Dr. O about this decitabine stuff.

Wednesday, August 5, 2009

MDS: More on Blood Counts

Following up on my posting of this week's blood count, my ever-astute spouse has discovered the following reference on MedicineNet, which explains blood counts.

Meanwhile, for those who prefer not to follow the link, here are a couple of paragraphs that offer a succinct review/explanation of platelet and hemoglobin counts.

Platelet count:
  • The calculated number of platelets in a volume of blood, usually expressed as platelets per cubic millimeter (cmm) of whole blood.
  • Platelets are not complete cells, but actually fragments of cytoplasm (part of a cell without its nucleus or the body of a cell) from a cell found in the bone marrow called a megakaryocyte.
  • Platelets play a vital role in blood clotting.
  • Normal range varies slightly between laboratories but is in the range of 150,000 to 400,000/ cmm (150 to 400 x 109/liter).

Hemoglobin count:

  • Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues to the lungs.
  • Hemoglobin is made up of four connected protein molecules (globulin chains).
  • Each globulin chain contains the heme molecule, embedded in which is iron that transports the oxygen and carbon dioxide.
  • Normal hemoglobin count for middle age males: 12.4-14.9 gm/dl.

So, we can see that this week's counts (165,000 and 12.4) are low-normal. A very encouraging sign. Indeed, the 165,000 platelet count is as high as my numbers have ever been—going back even to before this MDS adventure began.

Even though I keep involuntarily remembering that, while the Vidaza is raising the counts, it isn't a cure but a form of maintenance.

Still, for the present, it's all good.

Tuesday, August 4, 2009

Yesterday's Blood Counts

Yesterday's MDS blood counts:
  • Hemoglobin—12.4
  • Platelets—165,000
"Your blood is looking very good, sir," is what Dr. O said with a smile as she entered the examination room ominously brandishing a pair of needles.

Indeed. 165,000 is as high a platelet count as we've seen. Ever.

Then the Vidaza-filled needles were inserted, and by early afternoon the
  • headache
  • body aches
  • slight fever
  • slight nausea
  • fatigue
  • and itching injection sites
had all set in.

You've heard of TV's "sweeps week?"

Welcome back to "shots week."

Wouldn't want to feel too good for too long, however. After all, I am sick, eh?

Sunday, August 2, 2009

MDS: Ready? Vidaza—Round 4

All good things come to an end, the cliche has it, and so, too, do our Maine vacation and, come Monday, the current Vidaza shot-free MDS period.

Too bad.

As nice as this vacation has been—

and it has been fine, finishing yesterday with a round of golf in the rain that was about as good a round as this duffer can play (perhaps I should always play in the rain)

—this three-week Vidaza hiatus has been better.
  • no sore arms
  • no itching shot sites
  • no fatigue (good energy, as a matter of fact)
  • no feeling bad
  • feeling much better, actually, thank-you-very-much.
But, it's a new month and that means a new shot series that, understandably, I'm not looking forward to.

Perhaps being on the road has exaggerated a liberated, shot-free feeling; made the last series seem longer ago than the past series have seemed at the end of the break.

Or, perhaps just feeling more lively has made the MDS seem less real, more removed.

Whatever is causing me to sense distance between myself and the required shots, this time a false sense of security has crept in.
  • I feel fine.
  • So, why undergo these shots?
  • Maybe I'm not so sick after all.
It rather reminds me of having to return to school at summer's end. Last year's teachers, homework, exams, etc., always seemed so long ago. Did we really have to start all that again?

This fourth Vidaza series is supposed to be telling. After it, Dr. O reevaluates the bone marrow and, if I understand all this correctly, she decides if (that?) the drug is effective and should be continued.

No pressure?