MDS: Cells Acting Poorly

As I've said many times, part of the danger of doing a blog like this is that if the posts become less frequent, people begin to worry.

I'm still in-hospital, as the Brits say, running platelet counts that are lower than I thought possible (3,000). So, my energy level is equally low, and merely typing this short message strains my stamina.

Anyway, Penny has been circulating updates by e-mail. I've pasted the latest missive below. If, for some reason, you're not getting her emails and want to join her list, zap an email to me or her, or leave a comment saying you want to join the party.

Trying my best to stay awake.

The Daily Mitch Report

At the moment Mitch is resting a bit more comfortably.  The results are in from most of the tests with the infectious disease men finding nothing.  A second look at the bone marrow, however, was not reassuring.  There are preliminary evidences that the MDS has progressed into AML leukemia, but more staining and studying is needed to classify and type it.  Based on that, we’re probably looking at intensive chemotherapy, but that’s all we know now.  More details will be forthcoming.  The possibility of a bone marrow transplant is out there, but wouldn’t happen until after chemo even if he is a candidate.

More platelets and red blood cells were infused today and we think his temperature is more even.  Dr. O is making every effort to increase his platelet count and is starting prednisone and gamaglobulin which worked once before.

And he is eating a stale French crueler now, and that’s a very good sign.

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: 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: Pain of the Day

Well now, in addition to the Weekly Blood Count, it seems we have a new phenomenon going on: the Daily Pain.

A mystery pain showed up in my right hand two nights ago. It wasn't there at dinner. It was there when I climbed into bed. Nothing eventful had happened between time.

A kind of pulsing pain, it was.

• Back of the hand.
• A bit dull.
• Not a throb.
• A slow build up to a pulse.
• Pulse, pulse.
• Then fade.
• And gone.

What the . . .?

This hand pain stuck around for the next day, then disappeared as quickly and mysteriously as it had arrived.

To be replaced by an aching pain in the left knee.

Which made its presence known all day yesterday.

But, this morning on the treadmill, it, too, was gone.

The immediate reaction, as has been the case since MDS Day 1, is— huh, another medication side effect? Does one of these drugs cause joint problems? Ligament or tendon deterioration? Smoker's lung?

No matter if any of that's true, once again the situation has caused teeny-tiny paranoid thoughts to creep in.

By the way, did I mention that I'm positive my hair is starting to fall out? That my lungs are compromised? That my brain is addling? That my ears are clogging? That my SAT scores are going down?

Paranoid? Who me? Whaddaya kidding? Never heard of such a thing. Pass the Valium, please.

MDS: A Pattern Develops

Here in the 7th month of the Great Vidaza Experiment, a Shots Week pattern is emerging. It goes something like this:

• Monday - feel okay
• Tuesday - not so good; tired, bad stomach
• Wednesday - downright lousy; gas wars in progress
• Thursday - much better, thank you; peace abdominal
• Friday - soooo tired
• Saturday - just le me rest
• Sunday - alright, so-so
• Monday - not so good, again
• Tuesday - getting better all the time

This is simultaneously reassuring and exasperating.

Nice to know it's coming. Frustrating as hell to know that there's bupkus you can do to stop it.

Thursdays are particularly deceptive. For some reason, the stomach ache/gas pains disappear on Thursday, and the energy gets a bit of a boost.

The boost must be from not needing to waste energy groaning and moaning about the stomach. Because from Friday on, the stomach remains okay, but the energy disappears.

So, here it is, Saturday, and a long day of listlessness looms ahead of me. Amphetamines anyone?

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: Today's Blood Counts & Other Good Stuff

Today, lots of good news na things I want to hear, starting with this week's blood counts:

• Hemoglobin: 12.6
• Platelets: 101,000

Dr. O was particularly pleased with the hemoglobin counts.

She also said we'd add an extra week between shots and, even better as far a I'm concerned, said it was alright with her to try doing five-shot sequences rather than seven.

Excellent.

Being shot-up from Monday-Friday only should provide a huge psychological lift. It should also give me 2-4 more functional day per month.

Let's just hope it works.

And . . . this just in:

The skin biopsy apparently show nothing new. Dr. D says if the bumps need to be treated, it's have to be done systemically, and that's Dr. O's call.

Now—enough with the medical stuff. Penny and I are off to London for a week. Pip-Pip, and all that.

MDS: Medical Battle Fatigue

Yesterday required two trips to the dentist. Seems a crown that pre-dates MDS had never been permanently posted-and-pasted into my mouth because a root canal had to be done somewhere in the interim.

So, Dr. D posted-and-pasted the thing. I went home, took one bite of a ham and cheese sandwich, and the crown chipped. Sharp edges were scraping my tongue. Back to Dr. D I went.

Meanwhile, the stitches in my biopsied lower leg are itching like mad.

A kind of medical battle fatigue is setting. How many more body parts are going to betray me and begin to fail? I mean, my

• teeth are falling out
• legs are breaking out
• bones are copping out
• bowels are holding out
• skin is itching out-rageously.

It's enough to make a person freak out.

When I trace this entire adventure back, it's astonishing and a bit depressing to think how many medical disciplines have entered the fray.

• Internists (3)
• Orthopedist
• Oncologist
• Orthopedic Oncologist
• Radiation Techs of all Kinds
• Surgeon
• Anaesthesiologist
• Infectious Disease Specialist
• MDS Specialist
• Dermatologist
• Nurses in Many Numbers
• Nurse's Aids in Many Numbers
• Medical Assistants in Many More Numbers

and now the Dentist?

Oy boy. Good thing I'm here to keep these people occupied and gainfully employed.

You can see where this might wear a person down. Especially on a day when two dental visits were required. It's almost enough to make me forget that my feet always hurt, and have been hurting for 30-plus years.

On the other hand, my

• hair isn't falling out
• brain isn't checking out
• bodily fluids aren't leaking out
• ambulatory ability isn't flunking out
• sense of humor isn't passing out
• will to move on isn't giving out.

As my kids used to say, it's all good.

MDS: Up for the Count

Yesterday's counts:

Platelets: 139,000
Hemoglobin: 12.6

I think I'm finally getting it. The counts go highest when I feel the worst—as the end of the shots cycle approaches. After that, they descend for a couple of weeks, then ascend for a couple of weeks.

Yes, it's true. It has taken me quite a while to figure this pattern out. But, as the mystery and thriller writers often remind us: things are best hidden in plain sight.

So, here I am:

• arms itching/hurting like crazy
• fatigue engulfing me
• legs still breaking out in mysterious bug-bite-ish bumps
• stomach in flux from liberally mixing Zofran and Metamucil
• my sweet tooth run amuck, as often happens when I feel poorly

and I'm showing some of the best counts since this all started.

Good thing I know I'll feel much better in a day or two. Otherwise this high-count/feeling-lousy phenomenon might be discomfiting.

Uh-huh.

Well, it's Friday of Vidaza Shots Week (VSW), and I'm holding up surprisingly well. I only collapse with body aches and fatigue after lunch. Work gets done in the morning.

This contrasts starkly with the last VSW in which I felt like crap already on Monday.

And, ingesting nine Metamucil capsules per day (up from two/day during non-shots weeks) seems to be keeping my bowels in order, countermanding the Zofran anti-nausea meds.

Not that the Complaint Department has closed, mind you.

• The shots sites hurt/itch like crazy
• random itching pervades my body
• the stitches on my leg have begun to itch
• the only sports commentary I get on the car radio whilst driving to/from Dr. O's is about the damned Yankees instead of the important news about football.

Yes—the Complaint Department is always open.

Still, here we are, more than halfway through the shots ordeal, and I'm showing more energy than during any other shots week.

A good thing.

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 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: 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: 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.

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?

MDS Mitch Goes Pedaling

Yesterday: 7/19/09.

Two-hours on the South Branch Sussex Rail Trail, Mt. Olive NJ.

No post-cycling pain, stiffness, exhaustion or other after-effects.

No bug bites, either.

More blood counts today.

Chris Knapp photo.

MDS: Symptom, Imagination or Side Effect?

Lately I'm itching a lot. More than usual, it seems to me. And two little pimple-like bumps have appeared, one on each arm near the area where the needles go in. Add some other phenomena and symptoms that appear sporadically—like small insect bite-like red marks on my ankle—and I find myself frequently wondering:

• Is this a medication side effect?
• An MDS symptom?
• Something perfectly ordinary?
• My imagination?

This uncertainty adds to the MDS perplexity. There are, after all, several known side effects of the meds being administered...

• nausea from the Vidaza
• constipation from the Zofran that counters the nausea
• diarrhea from the laxative that counters the constipation
• skin irritation and shot-site itching from the Vidaza injections
• general fatigue during the shot cycle.
  

Is it a curiosity, then, that any little symptom or physical manifestation causes me to wonder?

Lately it seems to me that my hair is thinning. Is it, really? After all, Vidaza is a form of chemotherapy, and chemo causes hair loss.

Lets' say it is thinning. Is that because of Vidaza or ordinary ageing?

Or is it not thinning?

My delightful spouse says it's not thinning. The hairline is merely receding in a normal fashion for a 61 year-old. Since she's the one who cuts my hair, we must give her opinion a certain validity. She knows the strands up-close-and-personal.

But, every time I brush it, I see less hair there.

On some level, I don't really care. Being bald wouldn't be the worst thing that could happen. (Although I'd be tempted to start shaving my head, which makes absolutely no sense; I haven't shaved my beard in 40-plus years on the grounds that it's too much hassle.)

But, it's the not knowing if this thinning hair is a side effect, a symptom or imaginary that bugs me. Or the

• itching
• pimply-bumps
• red marks
• diminished appetite
• sore feet
• memory lapses
• infant-like crankiness when tired
• generalized despair at sports results
• or a nearly uncontrolled urge to eat nothing but sweets.

Inquiring minds wanna know.