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
Sunday, January 31, 2010
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
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.
Penny
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.
Penny
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.
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.
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:
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.
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.
Fore!
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!
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