MDS Becomes AML - No Platelets, No Energy

Today's counts:

• Platelets: 6,000
• Hemoglobin: 9.1
• White Cells: 7.8

Six thousand isn't a record low for platelets, but it ain't far off.

No platelets means no energy.

So, today I've slept.

While I've waited four-plus hours for the platelet transfusion bag to show up.

Even Ms. I.V. Pole is wondering what's going on.

There have been better days.

But, also worse.

MDS Becomes AML - You Can (and Sometimes Must) Go Home Again

Back in the hospital. It's like old home week here. Everybody knows my name. Everybody remembers what the problem is and what I'm here for. Even the guy who wheeled me down to x-ray remembered me—as did the woman who coordinates the order in which patients go into x-ray. She greeted me enthusiastically, saying "We've met!"

"Several times," I replied. With a smile.

This place is rapidly becoming my second home. Not really what I had in mind. I've always wanted a second home in the Berkshires or Vermont. With five or 10 acres, if possible. And a mountain view. Oh well.

It's an odd feeling to come here while feeling fine. When I arrived last April and this past January, I was really sick and I knew it. There was a logic that said, you need to go to hospital.

But, here I am, almost hairless but feeling rather chipper, and basically I'm saying to my keepers, "Sure fill me full of hi-test and make me feel miserable. And, while you're at it, feed me some of that god-awful food you serve up around here. Why not, I'm feeling great."

Luckily, Penny and Laina will take turns bringing in dinner. There are limits to my culinary tolerance..

The biggest news so far is my socks. Hand-knitted for me by Leena-the-Elder (namesake of Laina-the-Younger) they're bright red-gray-pink striped woolen foot covers that fit perfectly and—Penny is glad to see—don't cut off any circulation at the ankles. (When I get a camera in here, I'll publish a photos of them.)

Everyone—and I mean everyone—has commented, "I love those socks."

Whilst I was waiting down in x-ray for a return push to the room, an older woman (well, older than I) was wheeled in and parked next to me. Her knit hat gave her away as a cancer patient, too. The first thing she said was "I need a pair of socks like those!" a chat followed about the need for warm, loose socks  which, after I complimented her hat, morphed into long discussion about how to keep one's head warm when you're not accustomed to being bald or semi-bald.

My newfound friend related how she wraps a turban around her head for sleeping at night, but "sometimes it comes undone and it wakes me up immediately. It's cold!"

I agreed. Laying one's head on the cool side of the pillow is a whole other experience. But, I've assimilated well enough now that I no longer wear my cousin Susan's knit hat to bed.

So, the deal here this time is this:

• two hours of chemo at a 12-hour interval on Monday, Wednesday and Friday.
• Tuesday and Thursday off
• discharge as soon as my counts return to something normal and my GI functions show no ill effects.

This schedule caused a big sigh of relief. What I'd understood was two 12-hour infusions on the three days, which would've meant being tied to my five-wheeled friend (a.k.a. Ms. I.V. Pole Queen of Chemo) for all of the three days. This way, I'm Pole-free most of the time.

Oh freedom.
Oh-oh freedom.
Oh-oh freedom over me.
Before I'll be a slave [to Ms. Pole], I'll be buried in my grave
And go home to my lord and be free.

MDS Becomes AML - Back to the Big H

Well, it's H-Day. Return to hospital day. Or should we call it CC-Day. Consolidation-Chemo Day? No matter, it's back to the grind.

It's difficult not to be discouraged by the prospect of multiple consolidation treatments when I'd really rather just get on with the transplant. I'd have to be insane to welcome more hospital stays over fewer.

But, at least I know I'll be well attended on the oncology floor, and that we'll be killing off rogue leukemia cells bolsters the mind. Perhaps it's best to think of this as some kind of Bruce Willis film in which we blast the crap out of the bad guy cells and all of us good guys go home a bit scathed but happy in our victory.

We didn't make it to the theatre yesterday. One of us declared himself too tired to make the trip into the big city and fell asleep instead. Perhaps that a small sign that it really is time to return to cell killing treatments. It's always a bit disturbing to feel the fatigue and be unsure if it's blood counts falling, or just normal post-chemo tiredness.

So, we missed the play, and now it's back to the big medical center, where they'll stab me, continually count those blood cells and infuse me to kill all the cells in sight.

Pass the bad-cell-blaster gun, please, I'm ready to take aim.

MDS Becomes AML - Chemotherapy Day 5?

I've lost track of what day this is. Other than it being Friday. And I only know that because the white board, on which the nurses write their names as they come on duty, says so.

So, this may be Day 5.

Yesterday the counts were odd:

• Platelets 8,000
• Hemoglobin: 7.something

Today, the counts are up:

• Platelets 10,000
• Hemoglobin: 8.4

Some (all?) of those gains are no doubt due to my receiving a unit of transfused platelets and two units of what is apparently now called "packed red cells." I guess whole blood is no longer used in transfusions.

Either way, there's nothing external to show for this. The fatigue still rules and the ability to stay upright for more than half an hour remains a challenge.

We have, as I write, 54 more hours of chemo-drip. But, who's counting?

Food, too, is becoming a challenge. The stuff here is repetitive and close to inedible. Consider, additionally, that dinner arrives at 4:45 p.m., way too early to be eaten. But, if it's a hot meal, it's already lukewarm when it arrives.

But, hey—I've been to summer camp. I know how to handle bad food.

You bring in good stuff from the outside.

Laina came to the rescue with some Chinese take-out last night. Cashew chicken and shrimp fried rice. This after I'd had a vivid dream about eating fried rice. So, we're making a policy—dinner will be delivered.

It's the little things that are going to be me through this.

MDS Becomes AML - Chemotherapy Day 4

For yesterday, there are but two things to report:

• Platelets went back down from 10,000 to 4,000. More platelets were transfused.
• Energy level went to zilch, and most of the day was spent sleeping.

In truth, the day passes much more quickly when most of it is spent sleeping. There's no clock watching, wondering how to divert myself with the little energy I have, or flipping around trying to find a comfortable position in this bed.

I will say I'm reaching the point where I'm tired of being here. Of waking several times a night to pee (thanks to the constant chemo-drip) and re-remembering where I am and why. Of dreaming dreams in which I'm active and doing things and waking to re-realize that I'm not active and can't do anything.

I've experienced this before—back in 2001 when I was hospitalized for 3.5 weeks with a liver abscess—and I know it's a normal stage to pass through during an extended hospital stay. But, this stay looms much longer than did that one, or the one last April when all this began, and I'm having a hard time imagining how I'm going to feel two weeks out.

Guess it's best no to dwell on that.

Better to think longer term, and imagine myself back on the golf course come summer. To spend my day visualizing perfect golf swings wouldn't be such a bad thing, I imagine.

Fore!

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...