Friday's Blood Results

Friday's blood results:

• platelets 19,000
  

That's a relief.

Even if it's only up slightly, at least it's up and not down. After a five-day hiatus from the shots, I really feared the count would slip.

Here's some info on platelets: http://en.wikipedia.org/wiki/Platelet

Prednisone dose is down to 10 mg.

Five more days and we'll be off that stuff.

Walked on the treadmill this week, too. Three times for half an hour with three one-minute jogging intervals.

Progress.

The End of MDS Treatment Week One

We've reached the end of MDS Treatment Week One.

And?

Yesterday, the blood counts were higher:

• platelets 18,000
• heoglobin 11.3

This is good. Except that 18,000 isn't so high compared to a normal reading of 165,000 or more.

Must keep that in perspective. Must also try not to react much either way when these counts go up or down. When they go into the 100,000 range, then there might be something to crow about.

So, after the first round of shots, how do I feel?

About the same.

• Prednisone high in the morning
• Vidaza low in the afternoon
• Prednisone hungry all day
• Zofran (anti-nausea) bowel-blocked most of the time
• And, by day's end, bored

I wanna to go running
I wanna to play golf
I wanna to get outside and do something that requires energy
I'm too tired

Daughter Laina, the science person and survivor of mononucleosis and gall bladder removal reminds me that I must

• be patient
• accept the fatigue and just "go with it"
• relax in the boredom and amuse myself how best I can
• take a walk around the park
  

Jeez—that's all the same advice given to her by guess who when she was recovering from mono and gall bladder surgery.

Father, heed thyself?

I've great tolerance for pain. But patience for inactivity? That's tougher.

Still, there's hope: Verizon is coming to install FIOS tv/phone/Internet.

Suddenly I'll have access to 200-plus tv channels.
Suddenly I'll have access to Turner Classic Movies, the best offering in tv-land, which has no commercials.
Suddenly, I'll have a new pastime: working on a whole new set of TV remote-handling skills.

Now that's something to look forward to.

Now What?

Armed with some drug literature, a Web page printout and the ability to search this disease on the Web, I begin due-diligence on MDS.

Oy-boy.

The first few items that jump out at me:

• median survival - 3-5 years
• usual treatments - regular transfusions, other nastiness
• response percentages to Vidaza - 70% positive
  

Frankly, at this point, a person comes face-to-face with his own mortality.

True, the more I read, the better my situation seems to become. It seems that much of the info on the Web is dated. Vidaza is a recently approved drug that has markedly improved things.

Still, it’s hard not to feel nervous, dread, excitement. Kind of like a mouse probably feels when a cat begins to play with it before the kill.

What if I really do have just one to three years to live?
What will I do?
What will I be capable of doing?
What if I just ignore all this?
Will I be capable of ignoring all this?
How odd is it to potentially have an end-date to your life?

The next thought is more practical. Get your house in order.

Better make that living will/advanced directive.
Better create a master list of all the bills, account numbers, Web passwords, etc., for banks, utilities, whatever.
Better review everything with Penny.

Isn't that stuff that should already have been done and kept up to date on an ongoing basis?

Yes sir. Yes ma'am. And, now I will do that.

Even though I don't believe I have only three more years to live.
Even though I don't believe I'll be unable to function normally.
Even though I do believe that I can carry on as my half-asleep, procrastinating self.

Time to make like a boy scout. Be prepared.

Wait a minute.

Let's not get fatalistic or maudlin.

I'm still planning on skiing next winter.
I’m still planning on watching the Giants win another Super Bowl.
I’m still planning on being around when grandkids are born.
I’m still planning on celebrating a 50th anniversary.
I’m still planning on writing the Great American Novel.

Yes, that’s the plan. Well, except maybe for that last item.

MDS Treatment - Day 1

MDS Treatment - Day 1

Your Vidaza injections may:

• make you tired
• give you diarrhea
• make you nauseous and cause vomiting

The anti-nausea medication may:

• make you sleepy
• cause constipation

The prednisone already:

• makes you hyper
• makes you lose focus
• causes your energy to crash unexpectedly
• gives you indigestion
• requires two medications to counteract the indigestion

Is this going to be fun or what?

I spend Monday morning becoming increasingly nervous. A distraction is in order, so I drive to the range to hit golf balls. "You ought to hit something," someone had said by e-mail.

I haven't done any exercise in five weeks. And, look: the damned steroids haven't added even one yard to my drives. Pass the HGH, please. Well, at least this distracts me.

After lunch, Penny drives me to the doctor. Two shots, one in each arm.

"Your arms might get red and a little sore," the doc says.

The shots are no big deal. And, oh by the way, here's a prescription for anti-nausea medication, although you might not have that reaction.

Home again.
3 o'clock - feeling okay
4 o'clock - feeling tired
5 o'clock - is that wooziness?
5:15 - better take a pill
5:30 - uh-oh
5:45 - thar she blows! Nothing like projectile vomiting for excitement

Now a vital question: since I tossed after taking the pill, can I take another?

"No," says the pharmacist, "there's still medication in your system. Wait til bed time."

"Yes," says the doctor, "it's okay to take more. And, oh-by-the-way, you're supposed to take that an hour before the shots, not wait til you're feeling bad."

Wish somebody had told me that.

Riding the Medical Diagnosis Roller Coaster

Medical diagnoses can be a roller coaster ride.

This diagnosis has migrated from a belly ache to a stomach virus to possible liver, spleen or appendix problems to something called ITP and, finally, MDS.

Each pronouncement brings relief, resolve and a twinge of terror.

First reaction: Aha—at least we know what the problem is.

Second reaction? Or, maybe not.

In hospital, sitting for five hours with an IV-drip in my arm, I'm confident that I'll be free of this situation in a day or two.

When the blood count doesn't rise, despondency rifles through in spurts.

Discharge from the hospital brings a pinprick of hope, despite still low blood counts.

Three straight days of low-count blood tests suck me into disconsolateness.

An energetic Sunday followed by a rising blood count Monday put a bounce in my step.

A no-count, low-count Thursday has me sinking like someone's clip-blocked me in the back of the knees.

"But, I feel good," says I.

"It's the steroids," replies the doc. "We need the chromosome report from the bone marrow biopsy."

Out she goes. She's back in less than five minutes with some papers. "Yes," she says as if she's Sherlock Holmes and has the final clue, "it's MDS."

The drive home with that news brings the full emotional spectrum.

• Incredulity.
• Anger.
• Despair.
• Ironic gallows humor.
• Dread.
• Hope.
• Confusion.
• Denial.

And, of course the ultimate response: oh shit.

Just what is MDS

Just what is MDS, a.k.a. Myelodysplastic Syndrome?

"A group of conditions where too few blood cells are produced by the bone marrow."

Or, according to Marrow.org:

Myelodysplastic syndromes (MDS) are a group of diseases that affect the bone marrow and blood. Some types of MDS are mild and easily managed, while other types are severe and life-threatening. Mild MDS can grow more severe over time. It can also develop into a fast-growing, severe leukemia called acute myelogenous leukemia.

Now, that sounds scary.

The two more common types of MDS are:

• Refractory Cytopenia
• Refractory Anemia with Ringed Sideroblasts (RARS).

Refractory means resistant to treatment. But, these are MDS's less severe forms. They have a lower risk of turning into AML. Some patients with these forms of MDS may live with few symptoms and need little or no treatment for many years.

The doctor refers to my case as Chronic Refractory.

The Cause

What we have here is a chromosomal malfunction. Or, as the bone marrow report says:

Y chromosome loss with the addition to the Long Arm of Chromosome 11 (MLL Locus) and Interstitial Deletion in the Long Arm of the Other Homolog 11 and Deleton in the Long Arm of Chromosome 20.

Check out Numbers 11 and 20 in the picture. They look like one-legged men.

Apparently they need two full legs each to function properly.

Most of us would prefer two full legs, so who can blame innocent chromosomes?

Here's a video that explains things. But, beware: the video, which states that bone marrow transplant is the base line treatment modality, doesn't seem to take in Vidaza treatments.

What To Do? What To Do?

Treatment with a drug called Vidaza.

Vidaza is relatively new on the market, and seems to be fairly effective. It's administered in cycles: two injections daily for a week, followed by three weeks with no treatment. Initial treatment is four such cycles (i.e., four months worth).

Vidaza is an "anti-metabolite." It corrects problems with the maturation and growth of young blood cells in the bone marrow, alters the way the cell turns genes on and off, and also interferes with the production of new RNA and DNA.

Treatments, apparently, can go on for a cycle or two. For years. Or, forever.

Along the way, platelet transfusions are possible. If it gets worse, regular blood transfusions or even a bone marrow transplant are possible.

But, that's a worst-case scenario.

Right now, we're focused on the best-case scenario.

You Might Have Cancer

"You might have cancer."

How do you react to that statement?

Even when you feel fine...
Even when you're confident you're fine...
Even when there are no signs...

An infinitesimal but screechy little voice natters in the back of your head. "What if?" it squeaks with a timbre like fingernails-on-blackboard.

"I'm fine," you tell it.

"I'm fine," you tell the wife, kids, friends.

But, the little voice reminds you that you just might not be fine. And if you're not, things will be different from now on.

So when, a year and a half later, you are declared fine, you respond firmly and with finality to the voice, "Told you."

But, three months later, "You have MDS."

How do you react to that statement?

You ask, "What the hell is MDS?"