MDS: Bumping Along

These reddish bumps on my lower legs keep showing up, fading but never quite disappearing and, this week, they’ve brought in some large-sized relatives—who clearly must be the football-playing members of the clan—to take up positions on my right shin.

I presented my shin to Dr. O the other day, and she said it was time to visit the dermatologist.

Ah, great. Just what I need. Another doctor.

Have I mentioned that it took me six months to decide it was safe to visit the dentist?

Have I mentioned that I need new glasses but haven’t drummed up the wherewithal to visit the optometrist?

Just how many docs can a boy handle simultaneously?

Quite a few, apparently.

Dr. O says that now, while the blood counts are high and it’s not shots time, it’s a good time to get this looked at and maybe have a bump biopsy done. So, I’m trying to track down the derma doc who’s affiliated with our primary care practice.

Apparently she only works about three hours a week.

I exaggerate, of course, but the hours are limited and crazy. I doubt I can get in there before shots resume next week. If I can get someone to answer the phone at all.

Oh well. The bottom line is this: here’s just another bodily activity that might or might not be a Vidaza reaction/side effect, and it’s up to me to "just handle it."

Okay. I will.

This syndrome might drive me nuts, but at least it’s
keeping the medical profession in business.

MDS: Good Blood Counts & Good Vidaza News, too

Good news comes on the heels of another football Giants victory (3-0).

Yesterday's blood counts:

• Hemoglobin—12.2
• Platelets—97,000

I'm not personally thrilled with the 97,000 count because it remains below the magic 100,000 mark (magic for me, anyway, although I may be the only one). But, Dr. O was very pleased.

And, anyway, that count comes after Non-Shot Week Two, which means by the time we go back to shots next week, it'll likely be up some more.

The better news:

Dr. O has confabbed with Dr. MDS about the bone marrow biopsy report. Dr. MDS has declared that we should

• continue with the Vidaza treatments
• forget about a bone marrow transplant for the foreseeable future
• and plan for a reduction in Vidaza treatment frequency in either 10 months time or after a total of 10 months of treatment.

But, which is it? Ten months time or 10 months total? I'm not sure.

Okay—go ahead and accuse me, as my mother often did, of not listening. Or of not absorbing what I've been told. But, c'mon—I'd just spent an hour-plus in the waiting room, the joint was jumping with patients in all examining and treatment rooms, and, after all, Dr. O speaks with a pretty strong Indian accent.

Those are my excuses.

No matter. Either in 10 months or after 10 months total, we're talking about shots only every four or five weeks instead of every three.

I'll take that.

MDS Mitch Golfs Stowe

I suddenly realized that several days have passed since my last blog entry. No worries—traveled to Stowe, Vermont doing on-site golf research.

Well, someone's gotta do it.

The trip was delightful, although playing Stowe's new golf course, Stowe Mountain Golf Club, was as much like hiking as golfing.

Seems they built the thing directly into the Mount Mansfield and Spruce Peak hillsides. You actually must sign a waiver to drive a golf cart because some of the cart path's switchback descents are so winding and steep.

Maybe they should offer an adventure golf cart driving school?

And, the foliage, approaching peak color, was spectacular, even if it did keep distracting me from the golf shot at hand.

Be that as it may, I seem to have survived playing two consecutive days, first climbing up and down the mountain course, and then in 47-degree weather at the lower-elevation Stowe Country Club followed by the six-hour drive home.

Today I'm feeling a bit bushed, and I seem to have cultivated a headache whilst sleeping last night, but I'm not as tired as I expected to be.

And, the best news is: I played pretty well for 27 or those 36 holes. (I shot horribly on the second-day front nine, but miraculously recovered on the back nine. Go figure.)

The only slightly consternating moment, health-wise, came when I knocked my head against the golf cart roof as I was climbing aboard. With my last platelet counts being below the magic "you can do anything you want" 100,000 mark, I immediately decided I would develop a brain hemorrhage from this bang on the noggin.

So far, however, my head knocking seems to have had no effect.

I guess it was just the Shklear genes—my maternal side—leaking through. My grandma Sarah, who swore she was deathly ill all the years I knew her, ranked among the world's great hypochondriacs. She only lived to 100.

But, she passed along a dominant hypochondriacal gene to both her grandsons named Bernard, and a recessive version to most of the rest of us.

Who knows? If I bang my head harder next time, it might knock some sense into me.

MDS: I Got the Low-Down Blood Count Blues

Yesterday's blood counts:

• Hemoglobin—12.1
• Platelets—75,000

The 75,000 number concerns me.

Dr. O continually reassures me that it's normal for the count to drop after Vidaza Shots Week.

But, looking back, I don't recall any recent time it's dropped so low.

And, when it dips below 100,000, I begin wondering (wondering—not worrying; not yet, anyway) what that means. Because Dr. MDS had said that above 100,000 meant I can do whatever physical activities I want.

So, if I intend to ski—which I certainly do—does that mean I can't ski during certain weeks? If it does, how am I to know what the platelet count is at any given time? Monday's 75,000 could be Thursday's 110,000. Or Saturday's 150,000.

Do ski resorts have blood sampling stations adjacent to their lift ticket windows?

And, let's not even talk about low platelets short-sheeting my energy.

Meanwhile, the hemoglobin and white cell counts remain excellent. So, what exactly does that mean, anyway?

This is some kind of proverbial or cliched psychological roller coaster ride. But, jeez, it's my daughter who likes roller coasters, not me. I'd rather slide on snow, thank you.

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: Of Blood Counts & FISH Tests

Another Shots Week has been survived. You remember the old joke, "I flew here all the way from California and boy are my arms tired!"?

Well, I've once again endured 14 shots in the upper arms and, no they're not tired, but boy are they sore and itchy.

Yesterday's blood counts:

• Hemoglobin: 11.7
• Platelets: 98,000

These counts are beginning to drive me nuts. Sure, Dr. O says they're supposed to go down while the shots are in progress, and then move back up during the following three, shots-free weeks. Call me an alarmist, but when the counts top out one week at 169,000 and a few weeks later bottom out at 98,000, I find it confusing at best, unsettling at worst.

It's enough to make a person want to bore into his own bone marrow and demand that some molecules in there tell him what the hell is going on in there.

Speaking of confusing, the rest of the genetics report from the bone marrow biopsy came back, and that has really confused me.

As you may recall, the FISH study seemed to indicate that the chromosomes were okay. Now the regular test indicates no change.

Stop! No change is actually a good thing. We know that once the chromosomes show damage, they can't rebuild themselves. So, no change means that we're holding our own and the syndrome isn't drifting towards a worser level of MDS or leukemia.

So, what the hell does the FISH test report mean? Beats me.

It's enough to make one stop contemplating the question "What's the meaning of life?" and devote all waking hours to pondering the meaning of FISH.

Anybody got a worm?

MDS: An Energy Un-Crisis

A funny thing happened yesterday in the middle of this hellish Vidaza Shots Week (VSW). Energy appeared.

I've been feeling crappy all week, and spending inordinate amounts of time lolling in front of the TV watching sitcom re-runs. And, yes, that's been mollified a bit by discovering that a Ted Danson mini-fest (Cheers and Becker) plays from 5-7 p.m. daily on WGN-Chicago (Channel 8 on our system), but still the sluggishness was getting me down.

Then, energy to spare suddenly, mysteriously appeared late yesterday afternoon.

Down to the basement went I, where a half-hour was spent on the treadmill, and another half-hour was spent doing some strength work with exercise bands.

This, of course, makes no sense.

The later in the VSW one progresses, the lousier and more tired one expects to feel. By dinner time, I was almost perky.

Not to worry, however. By 8 o'clock I'd returned to a near-vegetable state, feeling achy all over.

I'd like to say there's some way to make sense of all this, but this MDS thing hasn't made any sense to me from the start, so why should a sudden feel-good burst be logical/reasonable/understandable?

Well, at least one thing is consistent: my shot-riddled arms are sore and itchy. As the Gershwin bros might've said, "They can't take that away from me."

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: This Shots Week Stinks

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

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

What's that all about?

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

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

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

• Hemoglobin—12.4
• Platelets—118,000.

Well, that's good news, anyway.

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

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

Pass the prunes.

MDS: 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: Drilling for Bone Marrow

Yesterday we endured the landmark bone marrow biopsy ritual.

Landmark because it comes after the fourth cycle of Vidaza shots, the time when true signs of Vidaza success should show up. Ritual because this is bone biopsy Number Three in what we hope won't be a long line of such tests.

Dr. O now takes the sample from the back of my pelvis. It begins with a couple of royally large novocaine injections. Not a mind-numbing experience. Rather, an upper butt-numbing one.

The procedure itself feels rather like someone is thumping on you with a hammer and a small, dull chisel or nail-set. Since I can't see what she's doing back there, I envision this small device delving into my bone and pulling out marrow as one might take a tree-ring boring or polar ice sample.

Mostly, I don't like to visualize that.

So, why are we doing this?

To see what the marrow is doing, as Dr. O puts it. Apparently we're looking out for

• increased blasts (bad, non-developing red blood cells)
• other abnormalities in the marrow
• and, much to my surprise, cytogenetics—further degeneration, stasis, or even minor miraculous repair (not likely), of the chromosomes.

From these results, we'll decide if the Vidaza treatments continue. (Which they will anyway, beginning next week, whilst we await the results, which Dr. O says should take a week, although last time the cytogenetics took two weeks, so I'm not sure what we'll know in a week.)

Apparently it was Dr. MDS who recommended this biopsy. Dr. O inferred that Dr. MDS wants it as a measure to use in considering the bone marrow transplant "because you're young."

For reiteration and clarification—age-wise, I'm right in the middle statistically for bone marrow transplant success, and still young enough to have decent chance of success.

Heck, I'm just happy to hear someone refer to me as young.

Meanwhile, yesterday's blood counts were good

• Platelets—139,000
• Hemoglobin:—12.0

indicating, as they have been all along, positive things.

So, next week, having graduated from being a core-sample guinea pig, I get to return to being a pin cushion.

Carry on, doc. Fill me with needles.

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.