MDS: Bad Counts & Low Energy

What goes up must come down? Is that what we're dealing with here?

Yesterday's blood counts:

• Hemoglobin: 9.2
• Platelets: 17,000

The platelets are now nearly as low as they were when I left the hospital in May.

Dr. O, however, doesn't appear overly concerned. These counts are following the normal Vidaza-related pattern—descending during and for the week after Shots, ascending after that. Only they're doing it as much lower levels than previously.

My question, then, is this: why? Can just one extra week between shots have driven these counts so low? Or does Depakote play into this?

Dr. O and I agreed that the lumps and lesions looked better. That says Depakote is doing its job.

But, oh how its making me miserable.

So, yesterday resulted in

• a shot of Procrit to boost the platelets
• a 5-day dose of antibiotics to alleviate a persistent cough
• a positive evaluation of the lesions and lumps
• sympathetic caution about the side effects of the Depakote.

I requested inquiry into a Depakote alternative.

Meanwhile, we expect that, between the Procrit and the normal Vidaza course of events, the blood counts will improve over the next week. The doc intends another Procrit shot next Monday.

Happily, she cleared me to go Alaska a week from Wednesday. I'll bring along my ski boots, but I suspect that the combination of low counts and near-zero energy will keep me from doing much beyond my ski wrtiers' organization secretarial duties while I'm there.

A shame, that. And a waste. And just another level of frustration in this whole mess. But, I'm way too tired to rail about that.

MDS: Another Day, Another Side Effect or Symptom

I’ve been basically out of commission for two full weeks now. Unable to get through an entire day without sleeping multiple times and undergoing body aches, pains and general feelings of nastiness.

It’s only today that my bowels seem to have returned to normal. For which Penny credits, at least partially, the white-bean-and-ham soup she brewed up yesterday. Delicious. And, yes, things have loosened up.

Little victories.

But, it’s impossible not to dwell on the puzzlements.

Yesterday afternoon, out of the blue, my right ankle and foot began to hurt and swell. What’s that all about? Is it

• a Vidaza reaction?
• a Depakote reaction?
• a happenstance?
• a reaction to the football Giants being creamed?

For that matter, has the two-week down time been a Vidaza, Depakote, or extra-week-between-meds situation? Or a combo of all?

There are way too many variables at work here, but the bottom line remains, at least for the moment that I’m too damned fatigued to do much, and even walking two flights of stairs is challenging.

I fear I’m becoming a lump.

We’ll see what Dr. O says about it later today.

Tough Week with Vidaza & Depakote

This is proving to be one of the tougher Shots Weeks. Maybe the toughest since the first one, when I had no idea what to expect.

The two weeks share some similarities, I guess.

• Each started with low blood counts.
• Each followed an extended period of non- or untargeted treatment.
• Multiple drugs have been at play during each.

Still, I’m kind of taken aback by the strength of my reaction this time around.

Forget the weariness. Forget the random shooting pains. Sure, the painful itching has emerged, as always, at the shot sites. The difference here is manifested in

• a kind of dicey equilibrium—some dizziness;
• alternatingly feeling way too hot and freezing cold; and,
• an acutely contradictory, coincidental combo of hunger and nausea.

Really, now, being hungry and nauseous at the same time is rather bizarre.

Meanwhile, I spend inordinate amounts of time touching myself to see how those bumps are progressing. This morning they actually seem to be abating a bit.

Good thing nobody’s around to see me feeling myself up. This hands-on approach could be perceived as perverse.

It’s Friday. Which translates to Thursday for a normal Shots Week, since we began this time on Tuesday. Thursdays usually show an uptick in my general sense of well being. But, as this is really Friday, will my auto-caressed body know the difference?

"Confused?" as they used to say on the old TV show Soap. "Tune in next time and you won’t be." Well, actually, we’ll all still be just as confused, I bet.

MDS: Two Steps Forward - One Step Back

Well, judging from the last two weeks, it seems like we’ve taken two steps forward and one step back. Let’s start with yesterday’s blood counts:

• Hemoglobin: 12.4
• Platelets: 63,000

Needless to day, that platelet count is not what was expected or wanted, especially after some delightfully high counts in recent weeks.

And, there are other developments.

Small lumps began to appear all over me about a week ago. Unlike the inflammations already present on the lower legs, these have no color, nor do they hurt or itch. They’re just there.

• on the arms
• on the chest
• on the back
• on the beautiful tush.

I’m reminded of our beloved family dogs who’d grown old and developed fatty tumors.

So, now I’m an old dog. Just may have to change my name to Lumpy.

You remember Lumpy, yes? Wally Cleaver’s friend from Leave It To Beaver.

So, this Lumpy, accompanied by his wife in hopes that together they might actually remember the answers to their questions, ventured to Dr. O’s yesterday, reciting the following symptoms:

• fatigue
• headache
• some light-headedness
• fatigue
• body aches
• random shooting pains
• fatigue
• inflammations getting worse on the left leg, better on the right
• fatigue
• and, lumps.

Dr. O’s immediate diagnosis:

• these are likely random leukemic cells that are popping up (which is what the red inflammations contain, as well)

The reasons:

• The fatigue comes from the low platelet count;
• and both the lumps and fatigue result from too long between Vidaza and Depatoke treatments.

The concern:

• Why are they happening?
• Are the leukemic cells in the bone marrow?

With the drugs re-started as of yesterday, the hope is that the lumps and inflammations will abate somewhat. The fatigue should lessen in the next between-shots time.

And, the doc announced in no uncertain terms, the next down time will be shorter. From now on, we’re back to a strict one-week-on/three-weeks-off schedule.

Okay. I never really wanted to extend the period between shots. I’d much rather we do this on the same week every month. Much easier to keep track that way.

I’d like only five shots, not seven. Not likely in the foreseeable future.

And, if the lumps, etc., don’t improve, it’ll be another bone marrow biopsy.

Everyone seems to agree that this diagnosis explains the fatigue, lumps and other symptoms of the past week. I’m really too tired to be discouraged, even if the winter travel schedule will have to be adjusted to fit the meds schedule.

I’ll just sit passively, let ‘em shoot me up, and do my best to stay awake.

MDS: Good Blood Counts, Bad Fatigue

Another day. Another MDS anomaly.

Excellent blood counts. Extreme fatigue.

Yesterday's counts:

• Platelets: 130,000
• Hemoglobin: 12.4

Yesterday's energy level (on a scale of 1-100 with 1 being low): 12.

What is up with that?

The counts are right on for the third week after shots. But, this boy tossed in the towel at 4 p.m.—after napping for more than an hour at noon-45.

Some say it's all the driving to/from New Hampshire, but I'm not sure. I mean, whilst in NH there was at least one day with a healthy nap.

Beats me.

But, here I am, 4 a.m., wide awake, feeling fine, lots of energy, and typing this missive. Jeez—by noon I should be able to conquer the world.

So, the ongoing puzzlement continues.

• What's an MDS effect?
• What's a Vidaza side effect?
• What's a Depakote side effect?
• What's psychosomatic?
• What's just me and my lifetime sleepiness?
• What's in a name, Rose?

So many questions. So few answers. So much better stuff to think about.

Like the blueberry-raspberry scone I had for breakfast the other day. So good. Clearly—thankfully—the MDS hasn't affected my taste buds.

MDS: Good Blood Counts Battle Bad Stomach

Ah, yes. The good news/bad news scenario continues.

The Good

Monday's blood counts (which I forgot to ask about on Monday):

• Hemoglobin: 21.1
• Platelets: 172,000

This is a bit startling, actually. The platelets have never been that high. Not even before all this nonsense began, when I was ostensibly a healthy boy.

And, since we waited this time an extra week between Vidaza treatments, I'm wondering if an extra week wouldn't always be a good thing. Perhaps there's an interval "tipping point" after which the counts begin to descend. Logical question on that one would be, what is that tipping point? Five weeks? Six? Ten to twelve years?

Mr. Science, here, realizes that only trial-and-error can answer that question. But, first, I'll have to ask it.

The Not-So-Good

The meds combo is wrecking havoc with the digestive tract.

• Shooting gas pains are firing there as if there's WWI trench-style warfare taking place.
• The region is bloating like a zeppelin is being inflated in the belly.
• And, gas is shooting out the back like an Atlas rocket at ignition and lift off.

Good thing I'm home alone this week.

Under normal circumstances, continuing this good/bad scenario continues, would raise fears in me that I'd drift into some schizoid state. Luckily, one of those battling battalions of pharmaceuticals (Depatoke) is designed to prevent just such a personality split.

Guess I'm safe from that consequence.

But, pity the fool who wanders within smelling distance of that Atlas launch pad.

MDS: Drug Interaction Dilemma - What to Do, What to Do?

Two side effects of Vidaza (primary treatment for MDS) are vomiting and the lesions formed on my legs.

A side effect of Zofran (anti-nausea to counteract the Vidaza vomiting) is constipation.

A reported side effect of Depatoke (anti-convulsive being used to heal the leg lesions) is diarrhea.

To counteract the Zofran-induced constipation, I'm consuming three Metamucil capsules, three times a day during Shots Week. (That's 4.33 times the normal two per day). To date this Metamucil regimen has prevented the need to ingest a laxative.

But, wait.

• If Depatoke, which I began swallowing yesterday, causes diarrhea, will it alone counteract the Zofran constipatory effect?
• If so, do I reduce the Metamucil for fear that a two-drugs-against-one struggle might result in a major, unsettling digestive system battle?
• Do I maintain the Metamucil for fear that the Depatoke won't counterbalance the Zofran?
• Do I call Mr. Wizard for advice? (Google search him, you young 'uns.)

Oh my.

Yesterday's results proved inconclusive. By late afternoon, my belly was complaining of pains and gassiness, but no more, really, than normal for Shots Week.

This morning, all appears to be moving along nicely.

I was never a science student, but even I know that obtaining good experiment results requires limiting the variables. Still, I don't want to pay the consequences of bad results either way.

These are the health maintenance questions that try men's souls. And, potentially, their toilet paper supplies.

Call it a lifestyle.

MDS: Back on the Bike

When your wife's away, your football team is tanking, the weatherman has provided cloudless skies and 72 degrees in November, and you're facing a new Shots Week (SW) with bonus medication, there's only one thing to do.

Get on your bike and ride.

Which is what I did yesterday. Traveled down to my pal Martin's place, which is located just a few paces from the Delaware Canal Bike Path. We pedaled north to Lambertville and continued on to Stockton.

After a sandwich from the Stockton Store, devoured alfresco by the path, we pedaled back. 27.5 miles, 3.5 hours cycling in total, according to Martin's handlebar computer.

Sure, it was all flat going. But, believe me, legs are tired, and my butt is sore.

Still, that's a small price to pay for getting my mind off the upcoming SW and addition of Depatoke to the mix.

I mean, have you read the possible side effects of this drug? Liver damage, pancreatitis, vomiting, severe drowsiness—the list goes on.

I know, I know, you're not supposed to take these lists too seriously. As the daughter consistently reminds, if just one person in the trials has a reaction of some kind, it must be reported.

But, please. Sometimes this situation feels like we're suffering a health version of piling on after the whistle has blown.

C' mon ref—get 'em off me! I've already got a sore butt!

The Report on Leg Red Spots

Yesterday there was good news and disappointing news relative to the bizarre spots on my legs.

Review: In two places, the small red spots have expanded into something that looks like raised bruises. A biopsy was done on the largest one (right shin) by Dr. Skin a few weeks ago.

The biopsy results proved puzzling. The presence of leukemic cells was indicated.

I presented the report to Dr. O on Monday. She, too, was puzzled. A confab with Dr. MDS was in order, she decided. She reported that confab's conclusions by phone yesterday.

The good news:

• Dr. MDS has seen these "lesions," as they are now being called, before.
• They are a reaction to Vidaza.
• They can be treated with Depakote (valpoic acid).
• The presence of leukemic cells does not indicate that the MDS is devolving into leukemia.

Whew.

The disappointing news:

• The 7-day shots cycle must continue.

Okay. I'm bumming about the seven days. I'd been psyched about reducing the cycle to five days, which I figure would reduce my feel-lousy time by at least two if not three days.

I'm also a bit leery of this Depakote. Sure, I trust Dr. MDS when he says it works to eliminate the Vidaza-related lesions. But, hold on, Depakote is an anti-convulsive also used in the treatment of bi-polar disorder.

Whoa! Are we ready for some schizophrenia!?! (As if the football Giants don't make me schizo enough.)

Alright, alright—just I'm kidding. I understand that drugs often successfully treat problems other than those designated for their primary use. Still, yet another drug to combine with those already being ingested (Vidaza, Zofran, plus a couple of  digestive supplements) bugs me. My brain still categorizes me as a young, healthy person.

Guess we're going to have to adjust that.

Anyway, Daughter reassured me about the frequent off-use of meds, and that an anti-convulsive doesn't mean inducing convulsions (hey—I knew that). And, she expressed cautious optimism about the bi-polar aspect.

"Might do you some good," she said.

Wait til I tell the rest of my personalities about that.