Tuesday, December 29, 2009

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.

Monday, December 28, 2009

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.

Saturday, December 26, 2009

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.

Thursday, December 24, 2009

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.

Wednesday, December 23, 2009

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.

Tuesday, December 22, 2009

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.
                                       

Sunday, December 20, 2009

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.

Friday, December 18, 2009

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.

Wednesday, December 16, 2009

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.

Monday, December 14, 2009

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.

Thursday, December 10, 2009

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.

Wednesday, December 9, 2009

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.

Monday, December 7, 2009

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.

Friday, December 4, 2009

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."

Thursday, December 3, 2009

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.

Wednesday, December 2, 2009

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.

Tuesday, December 1, 2009

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.

Friday, November 27, 2009

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.

Monday, November 23, 2009

MDS: No Naps in Sight

Five days without a nap. Is that kind of like going five days in the desert without water?

Don't think so.

But, it feels like it.

Not that any serious physical exercise has been included in those days. Just
  • 2 days of driving
  • 2 days of playing ski journalist in Boston at the Boston Ski Show
  • 9 holes of golf
  • 1 day of sitting in the semi-cold at Giants Stadium (at least the Giants won)
Really. How strenuous should that be?

Well, how it should be and how it is are two different things, and I'm facing this Monday morning with cobwebs in my eyes, between my ears and probably in other places.

And, I can't go back to sleep. Actual deadlines must be met.

Oh well. Dr. O never said I should show up for blood counts this week, so maybe I'll play it irresponsibly and not call to find out if she meant it. That'll buy me an extra 90 minutes to nap today and tomorrow.

After that it'll be Thanksgiving and she won't be there. Ha!

Night, night.

Tuesday, November 17, 2009

MDS: Surviving Another Week

Another week-plus of needles have passed.

I'm still standing.

Well, actually, I've been lying down most of the time, but metaphorically the standing bit still holds.

The blood counts continue to amaze and confuse. Yesterday:
  • Platelets: 142,000
  • Hemoglobin: 12.3
Why they continue to be this high, even during shots, means one of two things (or a combination of both):
  • the Vidaza is working
  • I'm really good at MDS.
Nice to be good at something.

Meanwhile, the effectiveness of the new medication added to the drug "cocktail"—Vidaza, Zofran, Depatoke—is hard to assess. The leg splotches look like they're fading a bit, but that could just be wishful thinking; seeing what I want to see.

We'll see.

Saturday, November 14, 2009

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?

Wednesday, November 11, 2009

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.


    Tuesday, November 10, 2009

    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.

    Monday, November 9, 2009

    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!


    Friday, November 6, 2009

    MDS: Flying with the Flu

    My friend/colleague Charlie Leocha just posted a piece on the blog ConsumerTraveler.com noting that
    • In a poll completed last week by the Consumer Travel Alliance (CTA), almost 73 percent of passengers said they would fly even if they had the flu. More than half of those would fly because either change fees were too high or it was "to late" to make changes vacation plans.
    It goes on to say
    • This is not the only survey that shows passengers will fly with the flu — another survey of thousands of travelers conducted by TripAdvisor showed that more than half of passengers would fly with the flu. [Based on 2,327 responders.]
    You can read the entire blog here.

    Okay—CTA is an organization that Charlie helped organize and to operate. So, he’s not citing some outside authority. And, his blog entry doesn’t say how many people responded to the CTA survey.

    Still, this is scary.

    As if I’m not paranoid enough about riding on airplanes (got back-to-back long haul trips planned for the first half of January), now this has been added to my menu of fears.

    Charlie faults the airlines for not mitigating things with easier re-booking rules and penalty fees.

    Good enough, as far as that goes. I’m no fan of the airlines.

    But, what about the people themselves? Don’t we owe it to others to confine ourselves when we’re sick? Where’s the sense of responsibility?

    Guess I’ll get me one of those medical isolation bubbles to use while in flight. (Remember "Bubble Boy" from Seinfeld?)

    That’ll show ‘em.

    Thursday, November 5, 2009

    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.

    Tuesday, November 3, 2009

    MDS: Vidaza Postponed

    Dr. O threw me a curve ball yesterday. Maybe it was more like a change-up, where the ball comes in so slowly that you swing so early and so hard that you almost fall over.

    She postponed the Vidaza shots til next week.

    You'd think this would make me happy. But, no. It just threw me off balance.

    I'd been busy Sunday evening indulging myself in some pre-shots misery—you know, "Oh woe is me; in 48 hours I'm going to feel like crap"—and by yesterday morning I'd built up my resolution to once more sink into discomfort.

    Plus, I'd kind of psyched myself up for the grand 5-shots sequence experiment, which will begin with the next series.

    And, worse, I'd called last Thursday to confirm we were doing shots this week. We were, I was told.

    So, I swallowed my Zofran pill, and drove to Dr. O's office. But, when I got there, she asked if it would be okay to do shots next week. She was going to be in NYC, you see, a few days this week.

    Well, at least she asked, rather than announcing.

    "We'll just check your blood today," she said.

    Good news there:
    • Platelets: 156,000
    • Hemoglobin: 12.1
    Still, I'm all aflutter. I'd made myself ready to be useless, and I'd taken the Zofran for nothing.

    Now, here I am with my bowels semi-clogged from the Zofran, but the rest of me perfectly functional.

    I mean, really.

    I've lost my excuse for doing nothing this week.

    Guess I'll just have to do something.

    Saturday, October 31, 2009

    MDS: Is It the Flu? Bring the Chocolate

    Slight flu-like symptoms set in Thursday just before dinner.

    At least I thought it was that:
    • headache
    • body aches
    • feeling like a slight temperature
    • feeling some chills.
    Not too much. Just a bit. Still, thought I, just what I need. The damned flu shot's given me the disease.

    I retreated to the bedroom, turned on the TV and ate two sections of a Trader Joe's milk chocolate bar.

    Symptoms gone.

    Yesterday—same thing.

    Does this mean that chocolate is the cure for very mild flu symptoms?

    Or, what if it's a chocolate-Vidaza interaction? Now, that could be groundbreaking.

    Friday, October 30, 2009

    MDS & Flu Shots - Go the the Head of the Line

    Traveled to Dr. Primary's place yesterday at 8:30 a.m. for a flu shot. By 4 p.m., I was convinced I had the flu.

    The psycho head games continue. To quote the Scarecrow: ah, if I only had a brain.

    Prior to my visit, I inquired of Dr. P by phone his thoughts on the H1N1 virus inoculation. He was apparently unaware of, or forgotten that, I was on Vidaza.

    "I don't think your bone marrow condition means you're in a priority situation," he said. "You're not on chemo, or anything like that, right?"

    "Well, actually I am. I'm on Vidaza, which is a kind of chemo.  Dr. O says I'm a fully qualified 'chronically ill senior.'"

    In that case, he agreed, I rated priority.

    Of course, his office doesn't have he vaccine as yet. "Keep calling," he said, "and when we do have it, tell the desk I said you're a priority case. They won't believe you, naturally, so they'll check with me. But it'll be okay."

    Well, why should they believe me? We've only been dealing with the docs in this practice (who are universally wonderful, by the way) for 20 years or so. I could just be an hysterical patient—or an egomaniac—who craves attention.

    Never mind. I've finally made it: a priority case. VIP. Head-of-the-line. On the list. The Big Time.

    This is some crappy realm in which to attain status—a mystery illness that pulls down an untested treatment for another mystery illness.

    I think I'd rather earn flying first-class privileges, or 50 yard line suite seats at the football games. But, you can't get those via a disease.

    My 4 p.m. flu-like symptoms disappeared by 8.

    No flu. No vaccine. No first-class flying. But, I'm priority. We'll just have to take our perqs where we can find them.

    Wednesday, October 28, 2009

    MDS: Jet Lag Sets In

    We're back from London. We appear to have survived the return flight—no fellow passengers suffered soughing or sneezing attacks in our general area of the plane. But, now, having risen from a lousy sleep at 4 a.m., I have a new quasi-medical question.

    Does MDS effect jet lag?

    Because, you see, by the aforementioned 4 a.m., my body was screaming at me that it was way past time to get out of bed. NJ 4 a.m. equals London 8 a.m., and had we slept til 8 in London, we'd've almost missed breakfast.

    And now, at 6:30, my stomach is crying to be fed. It clearly feels that it has missed breakfast.

    We won't know the longer term jet-lag effect for a few hours, if not a few days, but right now I'm thinking I don't stand a snowball's chance in hell of getting through this day without multiple naps.

    I doubt any of this time displacement is affected by MDS, but constant vigilance is a lifestyle these days. And, really, why not focus on nonsense like this? Otherwise I might have to do something constructive. Or worry about real issues like world peace, or something.

    Tomorrow—a flu shot. Can't wait.

    Tuesday, October 27, 2009

    MDS: Coughs & Sneezes in Crowded Places


    On Sunday, we traveled by train from London to Brighton and back. Few people were on board going to Brighton, but the return trip train was crowded.

    A couple who traveled for about a third of the trip sat near us, the male coughing intermittently.

    Last night, we went to the theatre. (Saw John Lithgow performing "Stories by Heart", his own one-man show. Excellent.) The young lady sitting next to me was sniffling and coughing. She was obviously nursing a cold.

    I sat squirming in these semi-crowd situations. I'm supposed to "avoid sick people," according to the basic recommendations for handling MDS.

    How do you do that on a crowded train or in a sold-out theater?

    The situations induced slight paranoia. Better not breathe, I told myself. Better not touch anything, like the armrest you share with that young lady. At intermission, I asked Penny to switch seats with me. I doused my hands with Purell. Even considered sticking some up my nose. (Would that disinfect the air I breathed?)

    Doesn't this young lady know that this cold she's sharing with us theatre-goers could kill me?

    Well, no actually. How could she know that? Bet she hasn't even heard of MDS. Besides, just because she has a cold, doesn't mean she must lock herself away until it goes away.

    And, besides that, you (I) can't avoid everyone in the world who has a cold.

    And, besides that, could it really kill me? Or would it just be more severe for me than a cold used to be?

    Is this nuts? Will I drive myself nuts?

    And, now, I'm about to get on a plane for an 8-hour flight. God forbid anyone coughs or sneezes in that environment!

    Sunday, October 25, 2009

    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.

    Saturday, October 24, 2009

    MDS: Stamina Holds Up in London


    Well, the stamina question was answered yesterday. You remember the stamina question, yes? How long would it take MDSMitch to reach utter exhaustion after flying all night?

    The answer: 2.5 days.

    The bottom finally dropped out yesterday (Friday), 2.5 days after landing.

    Still, I think that's pretty good. And, even though I didn't even want to get out of bed yesterday, not only did I do that, but managed to stay on my feet through a morning at the Cabinet War Rooms, a stroll in the Westminster Abbey/Houses of Parliament area, and a piano concert at the Church of St. Martin-in-the-Fields.

    All that after Penny kept me up til all hours at Royal Festival Hall for a London Philharmonic concert the night before.

    Then—collapse and fair uselessness until it was time for a classic half-pint-and-meat-pie at the local pub.

    Delicious, that was.

    So, really, I'm holding my own as we play tourist here in London. it's yet another life victory over the mundane.

    Cheerio, old chaps.

    Thursday, October 22, 2009

    MDS Mitch Goes to London

    I've survived an overnight flight. My first since MDS arrived. To London.

    Chalk it up to another "victory over the mundane," this time to flying all night.

    Rational or not, I was concerned. You arrive early in the morning, sleep-deprived, your body pretzeled into a series of aches and cramps, your digestive system totally tossed out of whack.

    And, remember—you've been angsting all day about flying. Did you remember:
    • passport;
    • camera;
    • voltage adaptor;
    • voltage converter;
    • to re-charge the re-chargeable batteries;
    • to pack this;
    • to unpack that;
    • medications;
    • especially medications?
    Anyway, I can't sleep sitting up. Not even armed with a neck pillow and prescription sleeping pill.

    On this trip I even tried my long thought-out pillow experiment: wear the neck pillow backwards to keep my head from lolling forward.

    No go.

    And, every sneeze of cough on the plane or in-bound subway made me wince. Germs! Beware the germs! They've everywhere!

    And, you know, these international germs are particularly virulent. And, I hear, the British germs especially don't like MDS people from New Jersey. After all, Jersey was the cradle of the revolution. I'm sure they still resent us for that.

    But, arrive we did, all in one piece. All-in-all it looks like this "chronically ill adult" survived the initial stages of the vacation.

    Need, want, demand more? These travels are chronicled at: Penny and Mitch's Travels, and at GraysAtPlay – Traveling Boomers' Adventures.

    Monday, October 19, 2009

    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.

    Saturday, October 17, 2009

    This young lady named Emily Barfoot called me one day out of the blue. Well, no, actually she e-mailed. Said she was a Penn State student who writes for a Web site called MDSBeacon.com. Asked if she could interview me for a feature article.

    I'd never heard of MDSBeacon (much like I'd never heard of MDS before I was told I had it), but it's a good site and anything that helps inform folks about this silly disease is a good thing.

    And, since I've been a Penn State football fan for years—largely because they have a coach who was an English major, has endowed the university's library, and is still coaching at 80-plus years of age—I said, "Sure."

    Besides, Penn State's Ag School makes and sells the world's best ice cream. Ben and Jerry learned ice cream making there. The stuff comes straight from the cow.

    So, I was interviewed. And, you can read the results here: Mitch's Article.

    It's kind of odd for me to read about me. I'm used to being on the other end of the process. But, Emily has done an excellent job. And, best of all, from reading about myself, I'd say I'm doing pretty well.

    Good for me.

    Friday, October 16, 2009

    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.

    Tuesday, October 13, 2009

    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.

    Sunday, October 11, 2009

    MDS: A Dog's Life?

    So, yesterday, feeling miserable and useless as I usually do on Shots Week Saturdays, I'm flipping channels among college football games, when I happen upon a promo or short featurette.

    At first, I can't figure out what it is.

    It's a hospital setting, and there's a doctor who's saying " . . . he's undergoing a bone marrow transplant with his own stem cells that we harvested from his blood yesterday . . . He'll be here in the hospital for three weeks, and then hopefully will go home to live a full life."

    I can't figure out what I'm looking at. The patient is . . .

    . . . a dog. A chocolate Lab, to be more specific. A dog suffering lymphoma.

    This, it turns out, is a promo for North Carolina State University's vet school.

    Just goes to show: even for we potential bone marrow transplants, it can be a dog's life.

    I wonder, could the NC State vets can take on my case?

    I wonder, was the dog's recovery set back some because NC State lost to Duke by 21?

    Friday, October 9, 2009

    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.

    Wednesday, October 7, 2009

    MDS & Flu: To Shoot or Not to Shoot

    On Monday, I forgot one question I had aimed to ask Dr. O—Can flu shot(s) be done by her, and when?

    Yesterday, I remembered to ask.

    Her short answers were:
    • Yes.
    • I don't know.
    Apparently the vaccines haven't reached her office yet.

    She recommended I contact Dr. Primary's office to see if they have the vaccines. But, she cautioned not to actually receive the shots whilst amidst this Vidaza shots cycle.

    It seems fairly common knowledge that the distribution of the H1N1 vaccine has caused confusion. That situation was illustrated just yesterday in a NY Times article Swine Flu Vaccine Reaches an Anxious Nation. Questions revolve around
    • For how many people is there enough vaccine?
    • Who gets priority?
    Among those who do get priority are "children and chronically ill adults." Dr. O proudly assured me that I qualify as a chronically ill adult.

    So, there you have it: Chronically Ill Adult. Another title or identification I've achieved, along with such hard-earned laurels as High School Graduate, Bachelor of Arts, Master of Fine Arts, Author, Published Photographer, Expert Skier, Husband, Father and Former House Painter and Moving Man.

    Attaining this designation makes me feel so special. It engenders a sense of pride, accomplishment and success that simply cannot be imagined by mere healthy mortals. Thanks be to my crippled chromosomes, for it is they that now permit me to jump to the head of the line. I rank among the privileged. And, for that, I will be permitted to accept yet another needle.

    Oh the joy to be so special.
    Oh the pride imbued in rating VIP service.
    Oh the thrill of getting yet more holes punched into my arms.

    I nodded, and told Dr. O I'd contact Dr. P's office immediately.

    I promptly went home and forgot to make the call.

    Tuesday, October 6, 2009

    MDS: Good Blood Count plus Questions Answered & Not

    Yesterday's blood counts:
    • Platelets: 119,000
    • Hemoglobin: forgot to ask . . .
    . . . or I didn't hear Dr. O when she said it.

    I was too busy trying to remember all the questions I intended to ask.

    Like?
    • Did the thyroid function test results come back? (Answer: no; have to do that over again.)
    • When she said the frequency of Vidaza shots could be decreased, did she mean after nine or 10 months total or in nine or 10 months? (Answer: nine or 10 months total; that's good.)
    • Can shots be skipped in January, when I've two major trips scheduled nearly back-to-back? (Answer: we can be flexible.)
    • Can flu shot(s) be done by her, and when? (Answer: none; despite my concerted effort to remember all the questions, I couldn't remember that one. Must ask today.)
    So many questions. So little brain power.

    A note about the thyroid: back in the first or second entry of this blog ("Backstory") it was noted that his entire adventure began with a pre-surgery MRI of my shoulder in which an unexplained "anomaly" appeared in the humerus bone. That led to scans of all kinds which, along the way, turned up hypothyroidism. That must be monitored every six months. I figured it could be done from Dr. O's office, since she's taking blood from me all the time. It can. But, the sample sent to the lab two weeks ago traveled with the wrong instructions. Thus, the do-over yesterday.

    Still, the big picture continues to look pretty good. Getting that platelet count over 100,000 provides a huge psychological boost me for. Its carries a sub-text of "now you can do anything you can do"—ride your bike, knock your head against the wall, ski, eat your heart out, run, fall down the stairs, whatever.

    And, I guess I've earned my certificate as a professional needle recipient. Four of them yesterday:
    • finger prick for blood counts
    • two for Vidaza
    • one for thyroid.
    Don't tell me I don't live an exotic and rewarding life.

    Monday, October 5, 2009

    No MDS News Today

    No MDS news today. Bruce news only.

    Bruce Springsteen, that is.

    I've long said that we ski/travel writers are often treated not like VIP's, but like IP's, which is good enough for me. Apparently, carrying a press card, or knowing some folks because of the press card, can yield benefits in unrelated realms.

    So, it came to pass that Penny and I not only got comp tickets to the Springsteen concert at Giants Stadium on Saturday, but were guests in one of the corporate suites. (The kind of which the Giants and Jets feel they have way too few, thus "forcing" them to build a new stadium, poor dears.)

    I will not lie. It's nice to be spoiled once in a while, to live with the other half for a few hours.

    The suite was ready for us with cuisine ranging from sushi and chicken Marsala to hoagies and hot dogs, and a fully-stocked bar. The 50-yard-line view was excellent.

    The performance? Stupefying. I'd pay dearly to have one-tenth of that guy's energy.

    But, the big question was: can MDSMitch stay awake for such an event?

    No problem.

    MDSMitch made it to the end. We got home at midnight-thirty. It took a while to fall asleep, and less than five hours of sleep ensued, so yesterday was pretty tired (notwithstanding the nervous energy generated by the football Giants' game).

    But, hey—I'm a Jersey boy born and bred. And every Jersey boy should see Bruce live at least once in his life, yes?


    And, anyway, this week is a Vidaza Shots Week (VDW), and the fatigue will be setting in, anyhow—so, so what if we gave it an extra day's head start?

    I may have reached a stage where I'm no longer "Born to Run," but rather am born to sleep, but—hell—it was worth it.

    Now, it's off to make like a pin cushion.

    Saturday, October 3, 2009

    MDS: On Dermatology & Oreo Cookies

    Well, now we can add Dr. Derma to the list of docs participating in this medical adventure.

    As I expected, she looked at my legs with puzzlement, and she'd never heard of Vidaza, no less whether these bumps on my legs are a Vidaza side-effect. No surprises there.

    "Which is the newest one?" she asked, poking at the purpled-bluish protuberance on my right shin.

    "I don't really know. I just noticed these two big ones last week."

    "Which is the newest one?" she repeated.

    "I don't know," I repeated. "I just noticed these two big ones last week."

    Pause.

    "So probably they're the newest ones."

    "It's right on the bone," she declared.

    "Yes it is."

    She was reluctant, I guess, to start poking holes where there was no so little flesh, muscle or fat to cushion the incision.

    She had no choice.

    She flattened out her power chair, causing me to lie back. I didn't like that. I'd've preferred sitting up and watching the action.

    But, stab away she did with the novocaine needle, then poking with whatever poking implement she used to extract the biopsy-able substance from within. Then, she began to sew.

    Stitches? Now I've gotta deal have stitches?

    Come back in three weeks, I was told. Replace the dressing after you shower. Keep your leg up. No running on treadmill for a week. Results in about two weeks.

    "I'm not going to treat these," Dr. Derma said, staring at my leg, "because I don't know what they are."

    Sounded logical to me. I don't know what they are, either.

    But, no running for a week just adds a new level of disquiet. Next week's a Vidaza Shots Week (VSW), anyway, so I'd probably not be running anyhow. But, losing these two or three days will just make me that much fatter and more out of shape. Because you know that the inactivity will cause me to eat.

    Oh well. Being the good patient that I am, I'll keep my leg elevated whilst I eat extra Oreo double-stuff vanilla cookies. Boy, those things are good.

    Wednesday, September 30, 2009

    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.

    Tuesday, September 29, 2009

    MDS: Good Blood Counts & Good Vidaza News, too

    Good news comes on the heels of another football Giants victory (3-0).

    Yesterday's blood counts:
    • Hemoglobin—12.2
    • Platelets—97,000
    I'm not personally thrilled with the 97,000 count because it remains below the magic 100,000 mark (magic for me, anyway, although I may be the only one). But, Dr. O was very pleased.

    And, anyway, that count comes after Non-Shot Week Two, which means by the time we go back to shots next week, it'll likely be up some more.

    The better news:

    Dr. O has confabbed with Dr. MDS about the bone marrow biopsy report. Dr. MDS has declared that we should
    • continue with the Vidaza treatments
    • forget about a bone marrow transplant for the foreseeable future
    • and plan for a reduction in Vidaza treatment frequency in either 10 months time or after a total of 10 months of treatment.
    But, which is it? Ten months time or 10 months total? I'm not sure.

    Okay—go ahead and accuse me, as my mother often did, of not listening. Or of not absorbing what I've been told. But, c'mon—I'd just spent an hour-plus in the waiting room, the joint was jumping with patients in all examining and treatment rooms, and, after all, Dr. O speaks with a pretty strong Indian accent.

    Those are my excuses.

    No matter. Either in 10 months or after 10 months total, we're talking about shots only every four or five weeks instead of every three.

    I'll take that.

    Saturday, September 26, 2009

    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.

    Tuesday, September 22, 2009

    MDS: I Got the Low-Down Blood Count Blues

    Yesterday's blood counts:
    • Hemoglobin—12.1
    • Platelets—75,000
    The 75,000 number concerns me.

    Dr. O continually reassures me that it's normal for the count to drop after Vidaza Shots Week.

    But, looking back, I don't recall any recent time it's dropped so low.

    And, when it dips below 100,000, I begin wondering (wondering—not worrying; not yet, anyway) what that means. Because Dr. MDS had said that above 100,000 meant I can do whatever physical activities I want.

    So, if I intend to ski—which I certainly do—does that mean I can't ski during certain weeks? If it does, how am I to know what the platelet count is at any given time? Monday's 75,000 could be Thursday's 110,000. Or Saturday's 150,000.

    Do ski resorts have blood sampling stations adjacent to their lift ticket windows?

    And, let's not even talk about low platelets short-sheeting my energy.

    Meanwhile, the hemoglobin and white cell counts remain excellent. So, what exactly does that mean, anyway?

    This is some kind of proverbial or cliched psychological roller coaster ride. But, jeez, it's my daughter who likes roller coasters, not me. I'd rather slide on snow, thank you.

    Friday, September 18, 2009

    MDS: Blah, Blah, Blog

    Yesterday, I was interviewed via phone by a very pleasant young woman named Emily. A Penn State student, she has a writing internship with a new Web site called MDSBeacon.com.

    She asked me, among other things, why I started this blog.

    "Mostly it seemed like the easiest way to keep friends, relatives and colleagues informed about what was going on with me and this silly disease," I told her.
    • Sidebar: is this actually a "disease?" It's called a "syndrome," and I've not figured out if that's different from a disease, a synonym for disease, or a subcategory of disease. Oh, the issues and dilemmas that arise . . .
    Anyway, I also noted to her that writing this blog was good news and bad news.

    The good news: it's a facile way to keep people informed, and it allows me to vent a bit when venting is required for good psychological health. (We wouldn't want any psych "syndromes" to set in, now, would we?)

    The bad news: if I don't post something nearly every day, people have a tendency to worry.

    So, sometimes I have to stretch a bit to create a post.

    Like today.

    But, no worries. If I miss a few days, it's likely that I've nothing really to report, that I've become overly busy with work, or that I've become overly busy with play.

    Especially play.

    Wednesday, September 16, 2009

    MDS: A Gender Bender

    Aha! An anomaly has been discovered in the FISH report. At the top it says:
    • Name: Mitchell Kaplan
    • Age: 61
    • Sex: F
    "Sex—F"!?!

    Well, it's true that my parents probably always wanted me to be a girl, since they already had a boy running around the house. But, really—after 61 years you'd think someone would've noticed my gender.

    I'd like to believe that this throws doubt on the veracity of all the genetics testing. I mean, if they can't tell from the Y chromosome situation that I'm male, what kind of attention is being paid?

    Of course, I realize it's just a clerical error, but I find no reason to be rational about this. Cling to any straw, I say. Make them do a do-over. At their own expense. Go to the video replay and charge them with a timeout. Toss these genetic analysts outta the game!

    "You were in the wrong high school gym class," my brother says. "You'll have to go back and do it over."

    Now there's something that just might be more horrible than having MDS.

    Tuesday, September 15, 2009

    MDS: Of Blood Counts & FISH Tests

    Another Shots Week has been survived. You remember the old joke, "I flew here all the way from California and boy are my arms tired!"?

    Well, I've once again endured 14 shots in the upper arms and, no they're not tired, but boy are they sore and itchy.

    Yesterday's blood counts:
    • Hemoglobin: 11.7
    • Platelets: 98,000
    These counts are beginning to drive me nuts. Sure, Dr. O says they're supposed to go down while the shots are in progress, and then move back up during the following three, shots-free weeks. Call me an alarmist, but when the counts top out one week at 169,000 and a few weeks later bottom out at 98,000, I find it confusing at best, unsettling at worst.

    It's enough to make a person want to bore into his own bone marrow and demand that some molecules in there tell him what the hell is going on in there.

    Speaking of confusing, the rest of the genetics report from the bone marrow biopsy came back, and that has really confused me.

    As you may recall, the FISH study seemed to indicate that the chromosomes were okay. Now the regular test indicates no change.

    Stop! No change is actually a good thing. We know that once the chromosomes show damage, they can't rebuild themselves. So, no change means that we're holding our own and the syndrome isn't drifting towards a worser level of MDS or leukemia.

    So, what the hell does the FISH test report mean? Beats me.

    It's enough to make one stop contemplating the question "What's the meaning of life?" and devote all waking hours to pondering the meaning of FISH.

    Anybody got a worm?

    Friday, September 11, 2009

    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."

    Thursday, September 10, 2009

    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.