MDS Becomes AML - No Platelets, No Energy

Today's counts:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 7.8

Six thousand isn't a record low for platelets, but it ain't far off.

No platelets means no energy.

So, today I've slept.

While I've waited four-plus hours for the platelet transfusion bag to show up.

Even Ms. I.V. Pole is wondering what's going on.

There have been better days.

But, also worse.

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.

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.

MDS: Snowtime Blues

It was a long Christmas Day. Plenty of presents. Too much food. Basketball on TV. Way too much food. And, I managed to stay upright for most of it.

After a 90-minute mid-morning nap.

But, by 8 p.m. I was a basket case. Seems to me that once-upon-a-time 2 a.m. was the "basket-case" hour. Ah, but that a different lifetime, one that came long before kids, not to mention MDS.

Still, I'm not pleased. It's been raining since dinnertime last night, but prior to that there's been all this snow on the ground. It was mocking me. "Here we are," it was saying, "all fluffy and white and slippery, and you can't even consider sliding on me."

My ski gear sits, as inactive as I am.

For non-snowsliders out there, this kind of downheartedness might make little sense. But, think of this: for we snowsliders who live in the metro northeast, the season is, at best, three-plus months long. It begins in earnest in early December, and is over by early April. One must slide at every opportunity.

To make the season longer requires travel to far away destinations. Places where the air has little or no oxygen. Places reached by expensive and extensive airplane rides. Airplane rides riddled with germs.

So, I sit—or lie around—watching the calendar creep towards January and the ski season slipping past without knowing if I'll ever get out there. Considering that a 20-minute walk around the park pushed my physical limits the other day, one really must wonder about what's possible.

Of course, this is about more than skiing. It's about what one's physically capable of doing; about sustaining a physically active lifestyle; about being able to dispel tension and express creativity through activity.

I'm still hopeful that I'll get in my outdoor sliding time. But, I'm sorry, no amount of Turner Classic Movies will substitute for its loss. I've been running around outdoors for too long to think it doesn't matter much.

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.

Skiing with MDS Proves a Trial

A tough weekend, albeit initially enjoyable.

I drove to North creek, NY, in the Adirondacks Friday afternoon. The drive was easy but, despite a late morning nap, I arrived tired.

After an excellent dinner and an overnight in a fine hotel, spent some of Saturday playing "travel writer," talking to locals about what's happening in North Creek (good stuff—see Good Scene at Gore Mt. & North Creek NY), then went up to the ski hill.

• Snow: good.
• Weather: decent (25 degrees, mostly sunny, some wind at the top).
• Ski legs: terrible.

It was a four-run day, divided by lunch, with my quads screaming all the way, and my energy sapped by midway on run two.

Spent the night at Phil and Brigitte Johnson's, friends who live north of Albany. Much shivering; couldn't get warm. Bothersome, this was—it just hadn't been that cold on the hill, and I hadn't been out there all that long.

Drove home Sunday morning, immediately went into nap mode, and felt like crap the rest of the day. Most of which was spent sleeping or trying to sleep.

At least I got to watch the Dallas Cowboys lose while I lay there.

I'm not sure what I expected to happen when I finally tried to ski in earnest. But, to be frank, I am not encouraged.

And tomorrow: Shots! Well, I do know what to expect from that.

Sorry to sound so glum. But, I am at the moment.

MDS Man Earns H1N1 Shot

What a difference a day makes. Two days ago I felt like a wet rag—please, just let me sleep. Yesterday, I more resembled the Energizer Bunny.

What the . . .!?!

As a reward for my high-energy state, I took myself to Dr. Primary Care's office for an H1N1 flu shot. This was no small deal. Being approved for the vaccine may have been just as tough as getting accepted at Harvard.

First: When I called to make the appointment, I prefaced my request with "Dr. PC says I qualify for the shot." After a moment's off-phone research the young lady told me without affect that she'd checked my chart and nothing indicated a condition serious enough to merit the honor of this inoculation.

- There is a serious condition, said I.

- What is it?

- MDS.

- What's MDS?

- Myelodysplastic syndrome.

[Pause. Shuffling of phone. Voices off.]

- When to you want to come in?

Second: once in the examining room, I could overhear an aide talking on the phone.

- Could you ask so-and-so why Mitchell Kaplan qualifies for an H1N1 shot?

- Do you want me to tell you,? I called from my seat on the examining table.

No response.

I walked to the next room.

- Do you want me to tell you?

And I explained myself again.

And again to the nurse practitioner who would do the stabbing.

At least I didn't have to provide references and a resumé.

So, I'd reaped one of the benefits of MDS—another needle. Then, I returned home, went back to work, and continued my Energizer Bunny day. If only the energy would last, I could suffer numberless needles and conquer the world.

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: Too Tired to Ski?

Yesterday fatigue smacked me like I hit a brick wall. Could it have been five napless days followed, after a napful day, by four more napless days?

Or is it nothing—just being tired?

That's the MDS game, as best as I can tell. Lots of physical symptoms which can't be directly traced to the syndrome or the meds, but may be caused by them.

And, they come and go.

Like the hand and knee pain from last week. Whatever happened to them? Don't ask me. They disappeared as quickly and inexplicably as they had appeared.

This current fatigue wouldn't be too bothersome (after all, they say I was born tired) except that we're perched at the beginning of the ski season. Notwithstanding a near total lack of snow in New England right now, the schedule calls for skiing in New Hampshire starting Friday, and being tired before I even go there rather bothers me.

This boy must ski to stay sane.

But, who knows? Maybe the snow gods are sending a message by withholding not only snow itself, but weather cold enough in which to artificially make it. Are they telling me something?

Maybe.

But, if that's true, why did they dump 14 feet of snow on Whistler in three weeks time? Perhaps they're telling me to "Go northwest, young man"?

Such are the deep philosophical questions that try a man's soul. These and questions like:

• What should I have for breakfast?
• How many skiers does it take to change a light bulb?
• Why did the chicken cross the road?
• And, of course, why me? Why not that guy over there?

These and other questions may soon be answered. But, first, a nap.

MDS Legs in London

Onward we trudge, traipsing through London as if on the Last March to Victory, testing not only my stamina, but Penny's, as well.

Museums, street markets, shopping, string quartet concerts, walks across the Thames, negotiating five flights of hotel stairs—it was in all in a day's pleasure yesterday.

I looked at my lower legs last night. The right one appears as if it's suffering from a sporadically placed but significant acne. The right one shows some acne-like red bumps, but the shin (where the skin biopsy was done), more than anything, looks like a plum is growing there.

Are there more red blots now? Is that purple blob growing larger? If so, is that all related to walking miles per day?

Probably not. It's more than likely my imagination, combined with a traveler's fatigue.

But, at this rate, I'm never going to win the "most beautiful legs in New Jersey" contest, never mind the "most beautiful New Jersey legs currently visiting London" contest.

What's a poor, middle-aged MDS boy to do?

Keep on truckin'.

This is a great city. So, Vidaza be damned, we'll do just 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.

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: 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: 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: 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 . . .)

Tired & Fat

As this west coast trip comes to an end, a few things are on my mind.

• How to get any exercise when traveling, since the typical day goes napless and is tiring.
• How to eat a whole lot less, especially if I'm not exercising.
• How, therefore, to create/maintain some kind of routine whilst in transit.

Not earth-shattering stuff, I realize. But, it's a pretty tiny mind I carry around, and this is what currently fills it.

Clearly, I need (or function best with) a normal routine:

1. up early
2. work early
3. eat
4. work some more
5. visit Dr. O (when necessary)
6. eat
7. nap
8. work some more
9. exercise
10. eat
11. laze through the evening to bedtime

This is hard to do on the road. Still, I'm supposed to be some kind of travel writer. So, I should be able to function on the road without becoming a tired, tiresome, run down lump who accomplishes nothing but eating and kvetching.

Not that's I'd kvetch about the eating I've done on this trip. Far from it.

But, to quote the late, great Phil Rizzuto—holy cow! Will you look at this belly? It's entering a room five minutes before I do! And, I'm half asleep when I finally enter behind it.

Could be it's time for a late-August New Year's resolution. Less food, far-far fewer sweets, and more exercise.

Sounds easy enough. I'll start tomorrow.

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?