MDS: Blah, Blah, Blog

Yesterday, I was interviewed via phone by a very pleasant young woman named Emily. A Penn State student, she has a writing internship with a new Web site called MDSBeacon.com.

She asked me, among other things, why I started this blog.

"Mostly it seemed like the easiest way to keep friends, relatives and colleagues informed about what was going on with me and this silly disease," I told her.

• Sidebar: is this actually a "disease?" It's called a "syndrome," and I've not figured out if that's different from a disease, a synonym for disease, or a subcategory of disease. Oh, the issues and dilemmas that arise . . .

Anyway, I also noted to her that writing this blog was good news and bad news.

The good news: it's a facile way to keep people informed, and it allows me to vent a bit when venting is required for good psychological health. (We wouldn't want any psych "syndromes" to set in, now, would we?)

The bad news: if I don't post something nearly every day, people have a tendency to worry.

So, sometimes I have to stretch a bit to create a post.

Like today.

But, no worries. If I miss a few days, it's likely that I've nothing really to report, that I've become overly busy with work, or that I've become overly busy with play.

Especially play.

MDS: A Gender Bender

Aha! An anomaly has been discovered in the FISH report. At the top it says:

• Name: Mitchell Kaplan
• Age: 61
• Sex: F

"Sex—F"!?!

Well, it's true that my parents probably always wanted me to be a girl, since they already had a boy running around the house. But, really—after 61 years you'd think someone would've noticed my gender.

I'd like to believe that this throws doubt on the veracity of all the genetics testing. I mean, if they can't tell from the Y chromosome situation that I'm male, what kind of attention is being paid?

Of course, I realize it's just a clerical error, but I find no reason to be rational about this. Cling to any straw, I say. Make them do a do-over. At their own expense. Go to the video replay and charge them with a timeout. Toss these genetic analysts outta the game!

"You were in the wrong high school gym class," my brother says. "You'll have to go back and do it over."

Now there's something that just might be more horrible than having MDS.

MDS: Good Bone Marrow Results

The early results are back from the bone marrow biopsy, and the news is good.

This while Shots Week continues with extreme fatigue, faint nausea, sore and itchy arms at the shot sites, and bowels that are uninterested in functioning.

Anyway, enough with the kvetching. The FISH test results show:

• less than 1% blasts
• no involvement of the chromosome #5q

Some brief explanation.

• The FISH (Fluorescence In Situ Hybridization) test "maps" the genetic material in a person's cells. This test can be used to visualize specific genes or portions of genes. More explanation can be found here.

• Blasts are "bad" or "dead" cells that are produced by the marrow. To have 1% or less is optimum/normal; the diagnosis is worse if the blasts exceed 5%. All people—even healthy ones like you—have some blasts.

• Involvement of the 5q chromosome is an indicator that the MDS is developing into more serious leukemia-like stuff.

So, these results are good—especially the blasts count, since it's the marrow producing too many blasts that creates the problem. The Vidaza seems to have the situation under control at this point.

Of course, no one knows how long the Vidaza will work . . . but, that's a whole 'nother story.

We still await the standard cytogenetic report, which last time took two weeks to come back. If I understand things (not a sure bet), it will show what changes (hopefully none) have occurred in all the chromosomes. Assuming no alarming results are reported from that, it appears I'm holding my own.

Good news, yes.

Considering, however, that this news comes in the middle of a Shots Week that has me feeling like I've been run over by a truck after having been summarily head-butted and kicked in the stomach and groin, I'd say it's like receiving $1 million dollars from John Beresford Tipton (remember The Millionaire?) while watching your house float away during a flood.

It's hard to celebrate when you're feeling like crap, so I'm saving much cheerful cheeriness for next week.

MDS: It's All Relative

Having returned from a brief road trip to Connecticut to attend a wonderful wedding, it's now time to prepare for another week's battle with Vidaza.

In theory, at least, I'm prepared to be useless or near-useless by Wednesday. We'll see if my "preparedness" holds up when I'm actually feeling lousy.

Meanwhile, of course, the bone marrow biopsy results may come in about mid-week, which just provides another element about which to convince myself I'm not worried.

The good news is that

• my golf game continues to improve
• and, the NFL season starts this week.

So, I can continue to distract myself not only with the life-and-death results of Giants' games, but with the mysteries of why I can sometimes hit a golf ball so well and other times so poorly.

This black-and-white (good shot/guys-bad shot/guys) orientation contrasts nicely with MDS's relativism.

Go Big Blue.

MDS: Symptom or Side Effect. Take 2

On July 17, I blogged about trying to determine the difference between symptoms, side-effects and imagination while undergoing these Vidaza treatments for MDS.

About that time (or maybe a little earlier—who can remember such things?), small red bumps appeared on my ankles and lower legs. They look like bug bites. They itch.

Mosquitoes? Spider bites from napping the basement? Lyme disease?

I wondered about all of those.

(Well, listen, it only took a small bit of imagination to see a circular pattern in those red bumps to decide Lyme disease could be a consideration.)

But, these bite-like oddities haven't gone away. Nor have they grown worse. They're just there.

So, I embarked the other day on some Web research, and came up with a skin condition called erythema. Initially, it seemed to fit the bill. Except that:

• it's purported to show up in patients taking Vidaza by IV, not injection
• most photos show it to be much more generalized and without the bumps; or with whole bunches of bumps.

Now I'm thinking, erythema?, probably not.

Of course I'll ask Dr. O tomorrow when she pokes into my bone marrow. But, it brings back into the spotlight a basic psychological conundrum:

• is it (whatever it is—itching, fatigue, discomfort, crankiness, lack of growing to be 6-feet tall) a side effect, a symptom or an imaginary figment?

I don't know. But not knowing isn't going to keep me from scratching the itchy little buggers. I'm keeping my fingernails at the ready.

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.

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.

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?

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?"

Nice.

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.

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.

Cool.

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.

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: 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 Vidaza.com, 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.

PBS on MDS

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.

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.

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?

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!"

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.

Ha.

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?

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.

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.

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?