MDS: Bad Counts & Low Energy

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

Yesterday's blood counts:

• Hemoglobin: 9.2
• Platelets: 17,000

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

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

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

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

But, oh how its making me miserable.

So, yesterday resulted in

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

I requested inquiry into a Depakote alternative.

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

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

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

MDS: Another Day, Another Side Effect or Symptom

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

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

Little victories.

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

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

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

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

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

I fear I’m becoming a lump.

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

Tough Week with Vidaza & Depakote

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

The two weeks share some similarities, I guess.

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

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

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

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

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

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

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

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

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

MDS: 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: 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.

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.

MDS: A Pattern Develops

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

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

This is simultaneously reassuring and exasperating.

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

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

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

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

MDS: Good Blood Counts Battle Bad Stomach

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

The Good

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

• Hemoglobin: 21.1
• Platelets: 172,000

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

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

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

The Not-So-Good

The meds combo is wrecking havoc with the digestive tract.

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

Good thing I'm home alone this week.

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

Guess I'm safe from that consequence.

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

MDS: 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.

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.

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.

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.

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.

MDS Legs in London

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

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

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

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

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

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

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

Keep on truckin'.

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

MDS: Up for the Count

Yesterday's counts:

Platelets: 139,000
Hemoglobin: 12.6

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

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

So, here I am:

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

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

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

Uh-huh.

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

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

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

Not that the Complaint Department has closed, mind you.

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

Yes—the Complaint Department is always open.

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

A good thing.

MDS & 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.

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.

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.

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.