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.

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: 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: 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: 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.

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: 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.

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.

MDS: Symptom or Side Effect. Take 2

On July 17, I blogged about trying to determine the difference between symptoms, side-effects and imagination while undergoing these Vidaza treatments for MDS.

About that time (or maybe a little earlier—who can remember such things?), small red bumps appeared on my ankles and lower legs. They look like bug bites. They itch.

Mosquitoes? Spider bites from napping the basement? Lyme disease?

I wondered about all of those.

(Well, listen, it only took a small bit of imagination to see a circular pattern in those red bumps to decide Lyme disease could be a consideration.)

But, these bite-like oddities haven't gone away. Nor have they grown worse. They're just there.

So, I embarked the other day on some Web research, and came up with a skin condition called erythema. Initially, it seemed to fit the bill. Except that:

• it's purported to show up in patients taking Vidaza by IV, not injection
• most photos show it to be much more generalized and without the bumps; or with whole bunches of bumps.

Now I'm thinking, erythema?, probably not.

Of course I'll ask Dr. O tomorrow when she pokes into my bone marrow. But, it brings back into the spotlight a basic psychological conundrum:

• is it (whatever it is—itching, fatigue, discomfort, crankiness, lack of growing to be 6-feet tall) a side effect, a symptom or an imaginary figment?

I don't know. But not knowing isn't going to keep me from scratching the itchy little buggers. I'm keeping my fingernails at the ready.