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.


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 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.


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.

  • 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."


"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.