MDS Becomes AML - Chemotherapy Day 6

Yesterday was a tough one. It started at 4 a.m. with a nose bleed. Well, actually, more like a bleeding nose drip. The drip continually woke me over the course of the rest of the morning, and revived itself whenever I moved to an upright position.

The hours in which I was able to sleep were filled with vivid and strangely Buñeul-esque dreams. Very intense, with marked story lines that made no sense.

Then the stool softener kicked in.

As I've documented often, Zofran, the anti-nausea med, causes constipation. Even though the chemo and the other anti-nausea drug Reglan, should've counteracted that by causing diarrhea, I was stopped up like a clogged bathtub drain.

The stool softener cleared that clog. Way too clear.

So, there I was with a constant nose bleed drip exacerbated whenever I stood upright, commuting to the boy's room and having nightmarish cinema dreams between.

Dr. O arrived and immediately stopped the Reglan. I guess she'd read the movie-dream reviews and didn't like what she'd read. That eliminated the in-the-head movies.

She also stopped the stool softener, but like earthquake aftershocks, we're still getting some seismic reactions from that. Laina has banned me from eating Raisin Bran til the aftershocks stop. It's all about Rice Krispies for me now.

And, Nurse Kate appeared with some surgical gel and 10-inch swabs (one-use q-tip kinda things) for gelerizing my nose. Just how long she thinks my nose is I'm not sure. She commanded me to swab periodically and—whatever you do!—not to dare blow my nose.

The drip continued all day, helped along no doubt by a platelet count of 5,000.

Platelets were transfused.

The drip continued.

Football was watched.

The drip continued.

More football was watched.

The drip finally abated.

But, now, I couldn't breathe.

You know how hard it is to resist clearing a completely stuffed nose that you can rid of obstructions with one good blow?

This morning I finally gave in. The bleeding held off. What a relief.

I shall continue to swab.

So, today is Day 7. The last chemo bag is dripping into me as I write. Nurse Amy says it'll be done by 9 tonight. "It started a week ago at two," I protested, " I want it done by two this afternoon."

She laughed. Apparently this is just another aspect of my situation over which I have no say or choices. I'll try not to watch the bag deflate drip-by-drip.

MDS Becomes AML - Chemotherapy Day 3

I know, I know—what happened to Day 2? Don't ask me, I'm only the patient.

The best thing I can say about this adventure's next day is this: I've been moved into the what must be the oncology floor's Presidential Suite. Compared to the closet I was living in, this is palatial.

But, it has a downside: can't walk to the bathroom without unplugging my five-wheeled friend, the IV stand.

Small price to pay.

At about 10:30 a.m., the dreaded nausea appeared in a mild form. Fire bells rang in my head and I, who usually try to not bother the nurses, immediately rang for help.

I've made it unremittingly clear—repeating the message as if whacking folks with a sledge hammer—that my greatest fear is suffering unrelenting nausea and vomiting. The good nurse Kelly was immediately in the horn to Dr. O and, voila!, within minutes extra meds were being pumped into me.

Bring it on.

Otherwise the day passes slowly. I've been able to work some in the morning. Afternoons bring with more fatigue. Laina has delivered some dumb-funny DVDs which will hopefully help the p.m. pass more easily.

It's still difficult to get my head around the idea of being here for a month. And then returning several times afterwards. That's more of a commitment to schedule than I've had since I no longer had to do high school, gymnastics and baseball practice car pools for the kids.

I'd trade back for those car pool obligations right now, believe me, no matter how nasty those kids were.

We are now done with the "push" aspect of this treatment—that is, when the one drug is injected directly over a 3-4 minute period. Which, in a way, just means more sitting around with one less landmark in the day, and only my 24-hour med drip to keep me company. Sometimes I look up at it and try to watch its progress, but it moves more slowly than I do, yet not quickly enough to hypnotize or to lull me into sleep.

So, I go back to—whatever.

So, here's to Day 4. May it pass without incident.

MDS Becomes AML - Chemotherapy Day 1

The Great Chemo Infusion has begun. As I sit here in my comfy hospital bed, blood is going in through one tube, chemo chemicals are going in through another tube.

I wish the damned NFL would start their games at 10 a.m. We sat around til 3 p.m. yesterday waiting for this chemo ritual to start, with no idea of when it would happen, and no football on TV til 1:30. If this keeps up, I may have to move to the West Coast to get a better schedule.

Meanwhile, the platelet count, 5,000 two days ago, has settled back in at 3,000. Nobody seems to know why, so blood was removed to be sent to a special lab for special typing processing.

Me, I'm wondering why we're putting blood in and taking it out at the same time. But, hey, I'm only the patient.

Anyway, the first day of chemo has gone without incident. I've insisted on mega-doses of anti-nausea Zofran, and it seems to be working. I even cut a deal with the night nurse, promising I wouldn't complain or attack her when she woke me up for a 1:30 a.m. dose. 

(An aside curiosity: chemo tends to cause diarrhea; Zofran constipates. Which will prevail?)

I think some steroids have been added to the drug mix (I can't keep track of what's being put into me) because my appetite has returned, and I've been typing away all morning. That's okay.

But, let's be real. This is a life-and-death situation. If this nonsense doesn't work—if this drug ritual doesn't put the AML into remission—the alternatives start to become pretty limited. And I'd have to dumb, stupid and in deep denial to be unaware of that. I'm not dwelling on it, mind you, but I'm aware of what's out there and my perspective is changing more and more to the shorter term.

As the old song says, "I gotta get outta this place/If it's the last thing I ever do."

And when I do, I'd better make the most of whatever's coming.

Anyway, here's Penny's literate explanation of what's being done to me.

This induction chemotherapy regimen is known as "7+3" (or "3+7"), because the cytarabine is given as a continuous IV infusion for seven consecutive days while the anthracycline is given for three consecutive days as an "IV push."  These drugs are supposed to interfere with the DNA and RNA of the fast reproducing cells and kill them off. Induction chemotherapy is very intense and usually lasts one week, followed by three or more weeks for the patient to recover from the treatment. This is the time when the chance of infection is a real danger.

Danger? I welcome danger! Maybe with a little Valium first...

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: 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.