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.

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.

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?

Nah.

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 . . .)