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.

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.

MDS: A Better Day

Some good news today: I’ve been able to stay upright most of the morning.

This is more than has been possible for the last 10 days.

I’ve determined that I’ve got a slight cold, which is exacerbating the situation. Makes me a bit nervous, but it doesn’t seem to be getting any worse.

So, I decided to take the advice of good old Dr. Rosen, pediatrician to many generations, including our kids, who always said, whenever a kid was sick with mild flu or a cold, "Get them outside. Get some fresh air into them."

So, Penny and I strolled around the park for 20 minutes.

Little victories.

MDS: Sleeping the Day Away

Another day. Another day of napping.

Slept from 9:30 til 11:15 this morning. From noon-thirty til 2:15 this afternoon. And, am now about ready to go back to bed.

Was running a low-grade fever yesterday, which started me to worrying. Who the hell knows what a fever might mean with MDS? Whatever it might really mean (likely, nothing), it raises the specter of vulnerability that’s been looming since Day 1: susceptibility to getting sick.

Today, the fever’s gone. The sleep continues.

I take this napping predilection to be a sign of the low blood count. It’s not dissimilar to what I was feeling when I was in Minnesota with the MDS first manifesting itself.

That begs the question—how low is the actual count right now?

We know what it was on Monday. But, is it lower now? I see little signs that it might be (i.e., the site where the blood was taken on Monday shows a bruise instead of just disappearing). But, what’s a real concern and what’s my imagination?

And, at what point do you call the doctor? Especially given that the day after tomorrow is Christmas, and then it’s the weekend.

And, if you do call, which doctor do you call?

Well, this thing put me in the hospital for Easter. Maybe it’s on a pattern to flare up for Christian holidays. Silly? Yes. Still, a silly superstitious notioin seems as logical as anything else I’ve encountered in dealing with this disease.

Enough. I’m going back to bed.

MDS: Blood Count - How Low Can You Go?

Yesterday’s count:

• Platelets: 26,000

This number hasn’t been that low since I left the hospital last April.

Dr. O says it explains why I’ve been so tired during this past Shots Week. She also reminds me that the count goes down during Shots, then rebounds later.

But, I’m not pretending. This bothers me. A couple of week ago the count was 179,000. Now this?

Okay, okay—I’m probably spending too much time and energy ruminating about these numbers. They seem to go up and down like an elevator gone wild. And, yes, I know all too well that Shots Weeks make me feel like doo-doo.

But, if you’re stuck lying around on the couch for a week watching old movies and football game you don’t care about, it’s not difficult to overly focus on what’s bothering you.

Which leads to all kinds of bad mental games: i.e.

• fixating on your own mortality;
• wondering how your own body, seemingly doing just fine nine months ago, has become something rather delicate;
• trying to understand why TV advertising is so stupid.

But, the hardest part is trying to get your head around the idea that this routine—these week-long sessions of feeling terrible and being useless—are going to go on forever.

Whatever forever is.

So, if there are 10 or 20 more years to live, I’m going to feel like crap for one-quarter of the time?

Now there’s a great prospect for you.

But, as the pundits say—it beats the alternative.
                                       

Not Fun

This is not fun.

Outside lies six or eight inches of pristine new snow.

Inside lies me

• head spinning
• stomach churning
• bowels plugged
• nausea creeping
• body aching
• and—most importantly—psyche gone weary.

As the kids say, this sucks.

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: On Skiing & Ski Boots

Sunday was the big day. Just enough snow to ski. Not much. But enough for two short runs.

The results?

Yes, I can still ski.

Even better—the boots fit, and I wore them.

Seems that, just as I was heading out the door for New Hampshire (well, metaphorically, anyway), Laina asked an all-too-pertinent question. "Will you be able to wear your ski boots with the inflammation on your legs?"

Ski boots, for those who haven't worn them, put significant pressure on the shins (home to the inflammation on my right leg) as you bend the knees and move forward. And, they pressure the ankles (where the inflammation lives on the inside of my left leg) as you edge the skis.

This, I suddenly realized, could be a problem.

First, I tromped around boot-clad in the hotel room. It was fine. But, hotel room stomping, while pleasantly annoying to the people lodging on the floor below, doesn't really simulate moving downhill.

Then, to the slopes.

And? No more discomfort than usual. (These heavy plastic boots are not the most comfortable things to begin with.)

And, the skiing itself wasn't exhausting. I even fell and got up without incident.

So, a Little Victory.

Come next Saturday I expect to put it to an all-day test. I expect to pass that test, too.

Skiing with MDS: Will I Be Any Good?

So, after nearly seven hours of driving, I arrived yesterday in New Hampshire to start the ski season, although today was entirely spent in a ski journalists' meeting, which may not be a bad thing because there is little snow in sight. It was 57 degrees and raining when we arrived.

But, today, one of my colleagues asked me if I was "ready to ski."

That, as mentioned in the last post, remains the burning question.

Ready is the operative word.

Frankly, I'm a little nervous, and I have been since this MDS adventure began. I know my strength and stamina are reduced. I don't know what that'll mean on-snow.

More importantly, I don't know how I'll react if my ability to ski is diminished.

Yes, I know—go with the flow, do what you can, and all that wise, rational advice.

But, c'mon. Skiing itself isn't rational (just ask my wife!). There is nothing rational about strapping a pair of boards to your feet and sliding down steep hills and fast speeds.

Fun? Yes.

Exhilarating? Absolutely.

Rational? No.

So, I doubt my reaction to any decreased ability or durability will be rational or show completely reasonable perspective.

It would be nice to discover I'm not as "out of shape" as I fear, but I am rational enough not to expect nothing to have changed. What and how much has changed comprise the looming cloud.

The good news? There's so little snow here right now that, given my shots and travel schedules, I'm not really going to find out where I'm at for nearly a month. And, maybe by that time I'll have recovered some more fitness and stamina and it won't be as bad as feared.

As the skiers say, "Keep 'em pointed down the hill, and go for it."

Skiing with MDS: Fear of Falling?

"Is your red cell platelet count good enough to let you ski?" asked my cousin-in-law, Dr. Bob.

Bob's an emergency room doc for whom I've a lot of respect as one who's on his game as a diagnostician with excellent broad medical knowledge. ER guys see it all, after all.

A question like that, coming from a genuine, licensed, for-real doctor, should've given me pause.

It didn't.

"I'm okay," I replied without hesitance, and perhaps a bit to much certainty. "Dr. MDS says 100,000 is the bottom line. As long as I'm above that, I'm okay."

He did say that, Dr. MDS.

But, if I acted like I was 100 percent sure, I was faking it. The season's first fall on the slopes looms ghostly in the back of my brain. I distinctly recall last season's first fall: a major crash on a steep slope in Jackson Hole in which I pretty sharply cracked the back of my head on hard ground. It was a real-life ad for helmet wearing (which I always do).

Head trauma ranks among the most salient watch-out-fors for those with low platelet counts. Smacking your head with low counts can, I understand, lead to brain hemorrhage. Even for guys like me whose head is most likely empty.

Now, my counts have been bottoming out at 112,000 to 120,000-ish, so I'm above Dr. MDS's bottom line. And, as time moves along between Shots Weeks, the count rises nicely, having gone as high as 179,000, which is higher than they were before MDS arrived.

Still, that little birdie of doubt tweets in the background. What if I really crash?

Well, it's like the old joke: "Doc, it hurts when I do this." "So, don't do that."

Crashing might not be an issue this weekend. There's little or no snow up in New England where I'm bound. But, in the long run, I guess I'd better implement Plan-A: stay upright, stupid.

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 Thanksgiving Yields Good Blood Count?

It appears that holiday over-eating has no deleterious effect on the MDS blood count.

Yesterday's blood numbers:

• Platelets - 112,000
• Hemoglobin: 11.9

These digits are decently high for halfway through the non-shots period.

And, they seem to provide living proof that stuffing one's self with—among other things—stuffing (not to mention

• turkey
• macaroni and cheese
• myriad salads
• tofu veggie loaf
• several types of pie
• and ice cream;

and, the next day,

• a Thai feast
• several types of pie
• and frozen musk melon bars;

and, the next day

• lasagna
• ravioli
• spaghetti
• myriad salads
• several types of pie
• and ice cream)

does not harm the MDS patient. Indeed, it might do him good, since he doesn't consume much food during Shots Weeks.

I must consult Dr. O about recommending that Thanksgiving be staged more regularly so as to fatten the MDS-er to best be ready to face winter's cold. Maybe we have T-day about twice a month, say?

Dee-lish.