Sunday, January 31, 2010

MDS Becomes AML - Progress continues!

Daily Mitch Report – Sunday, January 31, 2010

The good news continues. The white blood count is 3.1, and while that rates an” L for low” on the printout, for Mitch it is very positive. Platelets are at 21,000, and hemoglobin 9.4. Even Dr. Sharma was very pleasantly surprised and has taken him off the Neupogen to see how he does on his own. She’ll do a bone marrow biopsy middle of next week to see what the cells look like. And the infectious disease guys say they’ll take him off all the antibiotics when the white count is better.

An X-ray of the abdomen this afternoon shows no blockage, so he has been given official permission to eat clear fluids. He’ll stay on the TPN until we see how well his digestive system handles food, and then that will taper off. Keep your fingers crossed. And we’ll try to remember this improvement once he starts complaining about the food again.

He’s still very tired. The activity for the day was sitting in a chair while I cut his fingernails and trimmed his beard. Then he washed his hair with a shampoo cap – that’s a shower cap with a moist lining that one rubs around the head. It’s a good thing he doesn’t have much hair. We’ll know we’ve really arrived when he finally gets to take a shower.

So stay tuned and we hope to announce more progress tomorrow at the beginning of a new month.

Penny, Mitch and Laina

Saturday, January 30, 2010

MDS Becomes AML - Let's Hear it for the Whites!

Daily Mitch Report – Saturday, January 30, 2010
Good news today…the white count is up to 1! And Mitch reports he is generally feeling a bit better. His digestive system is more comfortable and he thinks the basketball in his stomach may be slightly smaller. The diarrhea is quieting, and a brilliant nurse attached a bubbler to add some moisture to his oxygen so even his nose feels better. Dr. Sharma just came by and she is very pleased as well. Of course, as he didn’t have any transfusions yesterday, the red blood cell count and hemoglobin are lower, so plenty of blood is flowing today along with the antibiotics, antifungals, neupogen, albumin, etc., etc.

So stay tuned and we hope to announce more progress tomorrow.

Penny, Mitch and Laina

Friday, January 29, 2010

MDS becomes MDL - Sorry for the Silence

Mitch had really hoped to post much sooner than this, and has resisted having me post anything because he wanted to keep this blog in his own voice. But, it is obvious from the amount of time without a post that he’s not up to it yet.

The first task is to bring you up to date. The effects of the chemo are indeed devastating on many systems of the body. Most troublesome for him has been colitis and continuing, although intermittent, diarrhea, and bloating which makes his “belly look like a small beach ball.” Fatigue has also been a constant companion, and, being in the hospital doesn’t help that with frequent interruptions. He has had many, many transfusions, and is getting very attached to his constant companion, the IV pole. Lots of antibiotics, antibacterials, antifungals .

On the plus side, his vitals are strong. And the care here at Valley Hospital is excellent. We are now at about day 19 from the beginning of chemo and are hoping to see some improvement in the blood counts over the weekend, especially the whites so they can get busy fighting infection and healing his body.

I will post my daily e-mail update here on Mitch’s blog until he bounces back enough to take over and redeem the style. We appreciate all your thought and best wishes. Keep them coming, please.


Tuesday, January 19, 2010

MDS Becomes AML - A very Bad Night. And Day.

We were this close. A few minutes away. Ready to declare victory over Chemotherapy Stage I.

Not so fast, Mister.

Less than an hour before the last chemo bag was to be detached on Sunday evening, just that much shortly before I would be free of my Five-Wheeled Friend, the diarrhea struck.

Not much, I thought at the beginning. But, I was duped.

What followed was a nightmare of a night in which I no doubt set the mark for bathroom visits, a number worthy of the Guinness Book of World Records. No one was counting, but I'm estimating 25-30 trips to the can. No sooner would I leave there, re-plug my Five-Wheeled Friend into the wall, and climb into bed than I'd need to return. Immediately.

This was accompanied by strong cramps and gas pains. A real Battle of the Bulge was being fought in my belly.

I called for assistance. A drug! A drug! My kingdom for an anti-diarrhea drug!

Pepto-Bismol was offered.

Are you kidding me?

The best the nurse could do, she said, was Imodium.

Imodium!?! That's like trying to bail out the Titanic with a water glass. How about some Lomotil, long the Kaplan family anti-diarrhea drug of choice?

Can't be done in the middle of the night. Must wait til we can reach Dr. O in the morning.

What kind of irony is this? Here I am in a hospital and I can't get the pharmaceutical of obvious choice. If I were home, I'd walk ten feet to the medicine cabinet and have as much as I cared to swallow.

And, so the night passed.

The Lomotil arrived come morning, an IV saline drip was attached, and most of the day was passed in sleep interrupted by IV drip-driven pee breaks. So much for being IV free.

A request was registered for a stool sample. "I put a 'hat' in the toilet," said Amy the nurse.

"A hat?"

"A little plastic bowl to collect the stool sample in."

"So, you want me to crap in the hat."

All day was required to produce the stool sample. But, like the first crack in a great dam, the stool trickle soon burst into a major flow.

Oh, I didn't break the Guinness record last night. Perhaps only a dozen journeys to the can. But, you try to sleep through that.

Am I disappointed? You bet I am. I thought I'd beat the system. Am I uncomfortable? You betcha. Nothing like cramps, gas pains, a sore overused butt to make a guy feel to home.

But, you know what? I never got nauseous or threw up. We'll take our victories where we can.

Sunday, January 17, 2010

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.

Friday, January 15, 2010

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.

Thursday, January 14, 2010

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.


Wednesday, January 13, 2010

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.

Monday, January 11, 2010

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...

Saturday, January 9, 2010

MDS into AML: the Next Stage

How much bad news is enough? When this ordeal started, the initial bad news was ITP. Two weeks later, it changed into MDS.

Whoever heard of these things?

Now the bad news is this: the MDS has turned into AML leukemia. Acute Myeloid Leukemia. (See here for info:

Well, at least leukemia is a disease I'd heard of.

Heard of, but hardly understand. Apparently there are a zillion types of leukemia, and a half-zillion variations on AML.

Okay, I exaggerate. But, still, nothing in this micro-biological world of bone marrow cells appears to be straightforward.

So, I'm beginning to think that a little ignorance will go a long way in dealing with what's coming.

And, just what is coming?

Well, I'm going to be living in this hospital for at least the next month. And, during my stay I'll apparently be subjected to ridiculously high doses of chemotherapy drugs, a cocktail of two or three of them. This will render my immune system useless, but once the treatment (7 days) is done, hopefully, over the following three weeks of my hospital residence, the leukemic cells will be gone and the system will begin to recover.

Then they'll let me out for a couple of weeks.

Then, they'll re-institutionalize me for five days of chemo and about a 10-day stay.

Then, they'll repeat this catch-and-release process two or three more times.

Add it all up, and it looks to me like I'll be doing this in/out of hospital and drug-em-up/let-em-recover routine for the next six months.

This can't be good for either my skiing or my golf game.

But, the alternative is to do nothing, which kind of guarantees that I'd be dead by golf season anyway. Which leaves me with no choice, really. And, sometimes having no choice is a good thing. No dithering with to-do or not-to-do decisions, or with choosing from Treatment A, B, C or D.

The action starts tomorrow. Plug me in and let's go.

Friday, January 8, 2010

Is MDS Becoming AML Leukemia?

Penny's latest summary:

It’s been kind of an even day around here - no chills, or fever ups and downs, and fewer medications.  The infectious disease doctors and tests found nothing.  So it looks like the cause of all of this is the MDS progressing into AML leukemia.  We’re still waiting for the full cytology report from the hematologist so the subtype can be determined – and that indicates prognosis and treatment.

At any rate, it most likely involves intense induction chemotherapy, and a hospital stay of weeks.  We should know more tomorrow.  And there is the possibility of changing hospitals, as well as immediately starting the treatment.  So those of you who were considering visiting might hold off until we know what’s going to happen and where.  Also, the cough has returned (it, too, responded to the steroid), so the preferred method of communication with the boy is still e-mail.

The highlight of the day was a SHOWER.  Mitch says he could have stayed there for two hours.  His Prednisone-caused appetite has faded although he managed to eat almost all his lunch sandwich.  The doctor has also taken him off the steroid and antibiotics so there are many fewer pills and things dripping into him.  Red blood cell counts continue low playing how low can you go, but there is some improvement in the hemoglobin. 

Wednesday, January 6, 2010

MDS: Cells Acting Poorly

As I've said many times, part of the danger of doing a blog like this is that if the posts become less frequent, people begin to worry.

I'm still in-hospital, as the Brits say, running platelet counts that are lower than I thought possible (3,000). So, my energy level is equally low, and merely typing this short message strains my stamina.

Anyway, Penny has been circulating updates by e-mail. I've pasted the latest missive below. If, for some reason, you're not getting her emails and want to join her list, zap an email to me or her, or leave a comment saying you want to join the party.

Trying my best to stay awake.

The Daily Mitch Report

At the moment Mitch is resting a bit more comfortably.  The results are in from most of the tests with the infectious disease men finding nothing.  A second look at the bone marrow, however, was not reassuring.  There are preliminary evidences that the MDS has progressed into AML leukemia, but more staining and studying is needed to classify and type it.  Based on that, we’re probably looking at intensive chemotherapy, but that’s all we know now.  More details will be forthcoming.  The possibility of a bone marrow transplant is out there, but wouldn’t happen until after chemo even if he is a candidate.

More platelets and red blood cells were infused today and we think his temperature is more even.  Dr. O is making every effort to increase his platelet count and is starting prednisone and gamaglobulin which worked once before.

And he is eating a stale French crueler now, and that’s a very good sign.

Monday, January 4, 2010

MDS: Back in the USSR

Houston, we have a problem. The Great New Year's Eve Platelet Transfusion didn't take.

Yesterday—Sunday—we finally gave up on pretending I could muscle through another day. Not a hard decision since I'd reached a point where I couldn't even walk a flight of stairs.

So, here we are. Back in the hospital.

And no wonder I couldn't walk the stairs:
  • Platelets: 4,000
  • Hemoglobin: 7
The lowest numbers ever.

I was immediately put on a variety of IVs, and we spent the night transfusing one unit of platelets and two units of whole blood. This literally took all night, complemented with checking of vitals every 30 minutes.

No sleep was achieved.

We are now awaiting the blood culture results, along with the new, post-transfusion counts. Tonight we'll likely be enduring another bone marrow biopsy.

The bigger question, of course, is this: why would the counts drop so precipitously so quickly?

And, why did the platelet transfusion not take at all?

Friday, January 1, 2010

New Year Celebration MDS Style

A quiz: How does the happy MDS patient celebrate the New Year?
  1. Go out to dinner.
  2. Go out dancing.
  3. Go out to dinner and dancing.
  4. Go to Times Square.
  5. Spend 9 hours in the Emergency Room.
Answer? Whadda you think?

This adventure began Wednesday afternoon when a pain shows up in my left hip. It doesn't go away, but radiates down the leg to the calf. It feels something like sciatica, but it's not. It keeps me up most of the night. By morning, I'm more of a basket case than has become the norm these past two weeks.

Penny calls Dr. Dr. O says meet her in the ER. She can do tests there she can't do in the office.

We arrive at about 11:30. Blood is taken. Many questions are asked and re-asked. The victim—uh, patient—is parked in a room that has a door with no door knobs. It's the psycho room. The victim—uh, patient—informs the nurse that he's the son of a psychologist and fully capable of acting nutty, if that would prove entertaining.

Then—we wait.

Each of us reads a book and a half.

Finally, the blood results come back:
  • Platelets: 10,000
The victim—uh, patient—needs a platelets transfusion. The "doctor" wants to admit the victim—uh, patient—to the hospital, as soon as a bed can be found.

Oh crap. First Easter; now New Year's.

But—wait. Along comes Dr. O. "You don't really want to spend the night in the hospital, do you?" she asks.


"I'll have you transfused and sent home. I'll see you Monday, anyway."

But—wait. Some kind of debate breaks out between Dr. O and Dr. ER. Dr. ER thinks the victim—uh, patient—has insisted on this course of action. She, along with three other personnel, must be re-educated on that point by the victim—uh, patient—while the victim—uh, patient—reminds everyone that he's not a doctor, nor does he play one on TV. It's not his decision.

Dr. O comments that "they're not used to seeing platelets
this low, but we see it all the time." Then, she leaves. We never hear anything more about "tests" that ca be done in the ER.

Then—we wait.

Blood is typed. (A-positive, in case you're wondering.)

Then—we wait.

Platelets finally arrive. The transfusion takes 90 minutes.

The nurse arrives to remove the IV, the fourth nurse the victim—uh, patient—has dealt with in this episode, and, while being upbeat and friendly expresses concern multiple times that "normally with counts this low we'd never send you home."

The victim—uh, patient—smiles. Get me outta here, he says.

We're home in time to see the ball drop, if the ball dropped somewhere in the middle of the Atlantic Ocean. The victim—uh, patient—settles in to watch what's left of AMC's "Three Stooges New Year's Marathon".

So, now the victim—uh, patient—is filled with someone else's platelets and, well, he feels about the same. Except the leg doesn't hurt any more. That stopped hurting just about the time we arrived at the ER.

Happy New Year.