Treatment couldn't start today because they had to verify the payment through his health insurance. Treatment starts tomorrow at 9 in the morning and will go all day long. Dad will be in lounge couch and have an IV drip.
Corinna and I will go in with him, keep him company for a little while. Then we will go shopping and bring him back lunch. Maybe a Thursday Times crossword puzzle if he is nice and hasn't been complaining too much all morning. And then we will get him Kaffee und Kuchen at around 3:30.
He is in great spirits. He is on cloud nine. He is a happy man. "Bring it on," he says.
He is no longer drinking the good wine, but deciding to keep it a little longer.
Wednesday, October 31, 2007
Tuesday, October 30, 2007
Yabut he's back
You have never seen a happier man. Well, maybe on those occasions when he has caught a particularly large bluefish.
Dr. Sawhney's exact words were: "We can get rid of the whole lymphoma. This is the kind of lymphoma that won't come back."
She said it may or may not have originated from the neck lymphoma, but even if it did, it is a different kind of lymphoma. The one he had in his neck could possibly recur. This one almost certainly won't.
By the way, the doctor for his neck was also almost certain that it wouldn't recur because he was so successful with the surgery and then the subsequent radiation therapy was like "belts and suspenders."
The treatment will be as follows:
Every three weeks, he will go in to her facility for a two-day treatment. On day one, he will get an IV with chemo. That will take 4 to 6 hours the first time. (Probably tomorrow will be his first time.) After the first, each IV procedure takes about 2 to 2.5 hours. And then on day 2, he goes in for a shot.
This cycle will repeat every three weeks, six times. That means the entire treatment will last 18 weeks.
After the 2nd treatment, they will scan him to see how the drugs are affecting the lymphoma. If there is progress, great. If not, they change the formula. But in any case, even if there is progress, he will continue for the whole 6 treatments.
On the tenth day, after each treatment, he will feel at his lowest. This is also when he will be the most prone to infection because his immune system will be at its lowest. If he gets an infection, he needs to tell them.
He can expect to loose his hair after the 2nd treatment.
They have drugs to counteract the nausea. He shouldn't feel very nauseous. If he does, they can try other drugs. He should never, ever have to vomit.
He might feel some numbness in his fingers, but if he finds that he can't do things, then he should tell her and she will adjust that.
The doctor's office job is to help reduce all the symptoms of the treatment, she said. He was encouraged to call anytime. But most people never need any help.
The best news for Harold was when he asked whether he could play golf. Dr Sawhney (pronounced: sa-HA-ney) said:
Not only is it okay. She wants him to play. She said that the people who respond the best to the treatment are the people who play golf and who are the most active. The people who respond the worst are people who are inactive. Being active helps build the immune system, she said.
For those who are interested, I will be scanning the prescription and emailing it. But the ingrediants are:
Rituximab 375mg;
Doxorubicin (adriamycin) 50 mg;
Vincristine 1.4mg
Cyclophosphamide 750 mg
and the next day shot is:
pegfilgrastim 6mg
He will also be taking predisone (cortisone) for five days only at the beginning of each treatment.
Dad is high as kite.
It's true what they say: You can't kill weeds.
Being a Sunday child helps.
October 30, 2007
Yesterday Harold got a call from the doctor to come in today at noon. So we are assuming we will find out the exact diagnosis today (Aggressive vs. non-aggressive) and details about the treatment schedule.
Sunday, October 28, 2007
October 28, 2007 Lucky
To read a different version about today's events check out my entry called "Lucky," which I posted at my personal blog called Lost Diary.
(On my personal blog? or "at"? Or "in"? When we invent new words, we really need to be supplying the user's manual to accompanying pronouns, punctuation and so-forth.)
(On my personal blog? or "at"? Or "in"? When we invent new words, we really need to be supplying the user's manual to accompanying pronouns, punctuation and so-forth.)
October 28, 2007
I brought down several books with me to Florida. And I had this idea that I would catch up on some writing projects that have been on the back burner.
Well, no such luck. Keeping up with the life of a retired person (or "retarded" person as Harold repeats, no matter how crusty that pun is) is exhausting. And it leaves very little room for my personal time.
There is breakfast. A boiled egg and salmon. "Lots of cream cheese because I have to bulk up. Did I tell you I am up to 183 pounds this morning?" Breakfast is accompanied by the crossword puzzle.
After breakfast, I am granted a short break. "I have to do my teeth." What other person in the world do you know who "does their teeth" with the care, precision and dedication that NASA took in landing a man on the moon. And that every single day. Of course, he never misses the opportunity to take a break while "doing his teeth" to come find me and make some comment about nothing while the floss hangs there in between two teeth, dangling while he talks.
Then, we have to "plan the day." In his mind, no, not just in his mind, with one hand lightly on my forearm, he lays out the best route to hit all the stores in such a way that optimizes either left or right hands turns from "the good lanes." All I can do while he is doing this, is stare at his hand gently resting on my arm. And though I still find it a particularly handsome hand, I am wondering how I could explain to everybody that it was just an accident that I happened to grab it and shove it down the sink disposal.
The main mission today is to buy new wine glasses. We need new ones because he has broken two over the last week. So, they are obviously no good. We need ones that don't have as long a stem so they won't be top heavy.
The morning is spent researching various brands online. And checking store hours. (Even though it is going to be at least 11 by the time we are on the road. "Yah but it's Sunday and some stores don't open til noon.")
The fact that is Sunday also means that the most important mission today is the paper.
Harold: I'm worried that Fatima won't have one. He always runs short.
Me: Well, then we'll just keep stopping at stores until we find one.
Harold: No, because I know they will have one at Publix. They always do.
I stare at him calmly wondering if he hears his initial denial of every single thing anyone ever says; and then that he adds something which didn't even require that denial! I look at those lips which must have made many women happy (since he himself is proud of the nickname "liver lips") and I wonder ... hmm, if I shove his face really far into the sink, will the disposal unit catch a hold of them?
Me: Then we'll go to Publix.
Harold: Yah but I want to go to Fatima to see if he has one.
Me: Ommmmmm.
Fatima -- (They don't have one.) ("Ommmmm")
Publix -- (They do.) ("Whew.")
Bed Bath & Beyond -- to see if we can get fancy glasses cheaply. Nope, they are too ugly.
Whole Foods -- so I can buy some hippy food. I catch him at the checkout line, looking a woman up and down. Harold: "You should get off the internet and start shopping here if you want to find a date. At least you can see the whole package of what you're getting!" Me: Sigh, at 83 my dad is still an incorrigible flirt, but in such a charming way.
Circuit City -- to find a new phone pouch for him. "This one I have is so big and ugly." He grumps that all the pouches at Circuit City are too big (because they fit his phone.) He picks up a nice leather one. "This one is nice." Me: It's nice because it's too small for your phone. Harold: Yahbut I could cut out the top right here at the fold. Me: Yeah, you could do that. Harold: Yahbut that wouldn't make it look nice anymore. Me: Ommmmmm
Town Center Mall:
Harold: "I'll show you (Me: Ommmm) where to park." (Me: Double-Ommm.)
Sears: we look at tool boxes.
Food Court: we are both hungry and get lunch.
Bloomingdale's to the crystal department. The goal here is to buy something that "has a name" and is "expensive." Him: "It has to be something Corinna will like and she wants a name." Then he pauses for a moment and adds -- "You know, like Nicky."
He remembers Baccarat as a "name." Yes, they have Baccarat. Ooh and yes, there is the perfect glass. And yes, the price tag is sufficient enough to impress even Nicky. But what's more: He actually likes it. "My nose fits in it."
(So how much does it take to impress your wife and daughter? I know you are dying to know. Ok, ok, so: $120 a pop.)
We are about to buy a set of six, but then ... wait: Harold does not pay retail prices. "Will these be going on sale anytime soon?" Oh yes, sir, in about two weeks, but you can reserve now and I will call you in two weeks. Done deal. As we are walking out, he turns to me and says, "You know how many people are ashamed to ask whether there might be a sale?"
(I am quiet because there are just too many answers going through my head to give to this millionaire who just saved a few bucks on a present for his wife, who will now have to wait several weeks in order for her to get her damn present, just because he wasn't ashamed to ask for about a sale.)
Nordstrom's -- looking for sandals for me. None.
Williams Sonoma: "Let's see if I got a good deal on those glasses." They don't sell glasses.
Crate and Barrel: "Let's see if I got a good deal on those glasses." They have nice glasses for $3.95. "Yahbut they're just not the right shape."
(Oh right. Like... as if they WERE the right shape, he would have bought the $3.95 glasses instead of the $120 ones?)
Back to the apartment. He takes a nap. I start writing this blog. Then it's coffee time (3:30) and he comes into the kitchen. "I'm up to 187!"
Me: Alright, enough! You are using this as an excuse to gorge yourself!
Him: Of course I am! Corin! What kind of cookies do we have to go with this coffee?
Okay, I gotta go. We have to do the walk.
Then more food.
Well, no such luck. Keeping up with the life of a retired person (or "retarded" person as Harold repeats, no matter how crusty that pun is) is exhausting. And it leaves very little room for my personal time.
There is breakfast. A boiled egg and salmon. "Lots of cream cheese because I have to bulk up. Did I tell you I am up to 183 pounds this morning?" Breakfast is accompanied by the crossword puzzle.
After breakfast, I am granted a short break. "I have to do my teeth." What other person in the world do you know who "does their teeth" with the care, precision and dedication that NASA took in landing a man on the moon. And that every single day. Of course, he never misses the opportunity to take a break while "doing his teeth" to come find me and make some comment about nothing while the floss hangs there in between two teeth, dangling while he talks.
Then, we have to "plan the day." In his mind, no, not just in his mind, with one hand lightly on my forearm, he lays out the best route to hit all the stores in such a way that optimizes either left or right hands turns from "the good lanes." All I can do while he is doing this, is stare at his hand gently resting on my arm. And though I still find it a particularly handsome hand, I am wondering how I could explain to everybody that it was just an accident that I happened to grab it and shove it down the sink disposal.
The main mission today is to buy new wine glasses. We need new ones because he has broken two over the last week. So, they are obviously no good. We need ones that don't have as long a stem so they won't be top heavy.
The morning is spent researching various brands online. And checking store hours. (Even though it is going to be at least 11 by the time we are on the road. "Yah but it's Sunday and some stores don't open til noon.")
The fact that is Sunday also means that the most important mission today is the paper.
Harold: I'm worried that Fatima won't have one. He always runs short.
Me: Well, then we'll just keep stopping at stores until we find one.
Harold: No, because I know they will have one at Publix. They always do.
I stare at him calmly wondering if he hears his initial denial of every single thing anyone ever says; and then that he adds something which didn't even require that denial! I look at those lips which must have made many women happy (since he himself is proud of the nickname "liver lips") and I wonder ... hmm, if I shove his face really far into the sink, will the disposal unit catch a hold of them?
Me: Then we'll go to Publix.
Harold: Yah but I want to go to Fatima to see if he has one.
Me: Ommmmmm.
Fatima -- (They don't have one.) ("Ommmmm")
Publix -- (They do.) ("Whew.")
Bed Bath & Beyond -- to see if we can get fancy glasses cheaply. Nope, they are too ugly.
Whole Foods -- so I can buy some hippy food. I catch him at the checkout line, looking a woman up and down. Harold: "You should get off the internet and start shopping here if you want to find a date. At least you can see the whole package of what you're getting!" Me: Sigh, at 83 my dad is still an incorrigible flirt, but in such a charming way.
Circuit City -- to find a new phone pouch for him. "This one I have is so big and ugly." He grumps that all the pouches at Circuit City are too big (because they fit his phone.) He picks up a nice leather one. "This one is nice." Me: It's nice because it's too small for your phone. Harold: Yahbut I could cut out the top right here at the fold. Me: Yeah, you could do that. Harold: Yahbut that wouldn't make it look nice anymore. Me: Ommmmmm
Town Center Mall:
Harold: "I'll show you (Me: Ommmm) where to park." (Me: Double-Ommm.)
Sears: we look at tool boxes.
Food Court: we are both hungry and get lunch.
Bloomingdale's to the crystal department. The goal here is to buy something that "has a name" and is "expensive." Him: "It has to be something Corinna will like and she wants a name." Then he pauses for a moment and adds -- "You know, like Nicky."
He remembers Baccarat as a "name." Yes, they have Baccarat. Ooh and yes, there is the perfect glass. And yes, the price tag is sufficient enough to impress even Nicky. But what's more: He actually likes it. "My nose fits in it."
(So how much does it take to impress your wife and daughter? I know you are dying to know. Ok, ok, so: $120 a pop.)
We are about to buy a set of six, but then ... wait: Harold does not pay retail prices. "Will these be going on sale anytime soon?" Oh yes, sir, in about two weeks, but you can reserve now and I will call you in two weeks. Done deal. As we are walking out, he turns to me and says, "You know how many people are ashamed to ask whether there might be a sale?"
(I am quiet because there are just too many answers going through my head to give to this millionaire who just saved a few bucks on a present for his wife, who will now have to wait several weeks in order for her to get her damn present, just because he wasn't ashamed to ask for about a sale.)
Nordstrom's -- looking for sandals for me. None.
Williams Sonoma: "Let's see if I got a good deal on those glasses." They don't sell glasses.
Crate and Barrel: "Let's see if I got a good deal on those glasses." They have nice glasses for $3.95. "Yahbut they're just not the right shape."
(Oh right. Like... as if they WERE the right shape, he would have bought the $3.95 glasses instead of the $120 ones?)
Back to the apartment. He takes a nap. I start writing this blog. Then it's coffee time (3:30) and he comes into the kitchen. "I'm up to 187!"
Me: Alright, enough! You are using this as an excuse to gorge yourself!
Him: Of course I am! Corin! What kind of cookies do we have to go with this coffee?
Okay, I gotta go. We have to do the walk.
Then more food.
Saturday, October 27, 2007
October 27, 2007
I asked Dad if he was going to play golf tomorrow and he said that he wouldn't because he was worried about stressing his body. He said he was just focused right now on gaining as much weight as possible.
I was insistent that he play golf. I said that exercise would not weaken or stress his body, but quite the opposite: make it strong in preparation for the chemo. I told him that he was developing the wrong mental attitude and conceding already to the sickness before it was even making him sick. He said he wasn't sure he could walk very far. And I (no mercy) told him it was all mental. Mr "YaBut" argued with me for a little while and then compromised: He would go on a morning walk in addition to an afternoon walk every day.
I know from my time with him in Burlington that a 3:30 coffee is really important to keep him going toward the end of day. And yesterday and today he was saying how this sickness was making him so tired at the end of the day. Mr. No Mercy insisted that it was because he was not doing his coffee routine. So, today I made him coffee. And sure enough, an hour later, he was saying, "ooh! I feel good. Maybe it is mental."
Today, after Nicky, Christian and Till left, all three of us went on the walk. As soon as we started walking, Dad started saying, "Ooh, I don't feel bad at all. My legs don't hurt. I don't understand it. I feel fine. This is good. Maybe you were right; it was all mental."
He kept repeating how glad and appreciative he was that I had pressured him back into a routine that is really important -- both to him AND to Corinna.
Wait until he is puking and losing his hair and I tell him it's all mental.
PS: If you click on Dad's picture, it comes up larger.
October 24, 2007
Hi Guys,
the good news for today is that Dr. Sahani (Dad's oncologist) did not find any cancer cells in his bone marrow. That means it hasn't spread throughout his entire body - definitely good news. They have rescheduled another biopsy for Friday, because the sample from the first biopsy was so necrotic (full of dead cells) that they could not even find live cancer cells for diagnosis. This indicates that the lymphoma he has is highly aggressive which is good, because these types of lymphoma have a 90% chance of going into remission after chemo.
The chemo will be hard and miserable. Dr. Sahani is determined to give Dad as high a dosage as possible of chemo to improve his chances of surviving. She is doing this because he is otherwise so healthy, and equally or almost more important, because he has such an optimistic personality and wants to live (like another 100 years or so). He will lose his hair and become very very weak. He will need someone to take care of him, and makes sure he gets up out of bed, eats, and does other simple things that will feel like climbing Mount Everest to him. He is endlessly happy that all of you want to come, but doesn't want more than one of you here at a time, because he says that would be too much for him.
It is amazing to see how Dad is dealing with this. There are moments where it is clear that he completely understands what this is about. He has openly said to me, Corinna, and Christian that he is scared shitless. There are other moments where he completely blocks out any nasty details. For example, I think he hasn't yet fully realized what the chemo will do to him. That might actually be good.
Dad, Corinna, Christian and Till just headed out to the golf course - that should keep him preoccupied for a while. That's what he really wants now, to keep busy, and he said that he can't stand to be alone right now. That from Dad.
ooma ooma, Nicky
the good news for today is that Dr. Sahani (Dad's oncologist) did not find any cancer cells in his bone marrow. That means it hasn't spread throughout his entire body - definitely good news. They have rescheduled another biopsy for Friday, because the sample from the first biopsy was so necrotic (full of dead cells) that they could not even find live cancer cells for diagnosis. This indicates that the lymphoma he has is highly aggressive which is good, because these types of lymphoma have a 90% chance of going into remission after chemo.
The chemo will be hard and miserable. Dr. Sahani is determined to give Dad as high a dosage as possible of chemo to improve his chances of surviving. She is doing this because he is otherwise so healthy, and equally or almost more important, because he has such an optimistic personality and wants to live (like another 100 years or so). He will lose his hair and become very very weak. He will need someone to take care of him, and makes sure he gets up out of bed, eats, and does other simple things that will feel like climbing Mount Everest to him. He is endlessly happy that all of you want to come, but doesn't want more than one of you here at a time, because he says that would be too much for him.
It is amazing to see how Dad is dealing with this. There are moments where it is clear that he completely understands what this is about. He has openly said to me, Corinna, and Christian that he is scared shitless. There are other moments where he completely blocks out any nasty details. For example, I think he hasn't yet fully realized what the chemo will do to him. That might actually be good.
Dad, Corinna, Christian and Till just headed out to the golf course - that should keep him preoccupied for a while. That's what he really wants now, to keep busy, and he said that he can't stand to be alone right now. That from Dad.
ooma ooma, Nicky
October 22, 2007
Hi Guys,
Dad is doing well physically, he's eating again, gained 4 pounds, and got back same color in his face (he was pretty grey). He even showed off the big Nr. 2 he made yesterday to Corinna.
He is still adjusting emotionally and of course this will be a continuous struggle. In his typical "verdraenger" mentality, he thought until yesterday, that he would take a few pills for chemo, and then become healthy again. He has been talking to Christian alot and C. has been honest with him. He now knows that at best, he can hope for remission of the lymphoma, and how long that remission will be, nobody knows. He is also starting to realize that chemo does not involve only popping a few pills and has been asking about the side effects. He will hopefully find out more about this at his meeting with the oncologist tomorrow morning at 9:00.
He has also talked to Christian about how he would like to die, and that under no condition does he want to have life prolonging treatment. C. told him that it is very important that he put this down in writing as soon as possible and give this to his physician here (Dr. Levine) and his physician in Burlington. Mathias, once you are here it is important that you follow up on this.
Right now Dad is humming in the kitchen, unloading the dishwasher, and his plans for today are, what else, a trip to Cosco, and then in the afternoon he wants to watch "Home Alone" with Till and Corinna. So life is running along a kind of double track at the moment, on the one everything is normal, one the other we all know how precious every moment and day is. And both tracks need each other.
ooma ooma, Nicky
Dad is doing well physically, he's eating again, gained 4 pounds, and got back same color in his face (he was pretty grey). He even showed off the big Nr. 2 he made yesterday to Corinna.
He is still adjusting emotionally and of course this will be a continuous struggle. In his typical "verdraenger" mentality, he thought until yesterday, that he would take a few pills for chemo, and then become healthy again. He has been talking to Christian alot and C. has been honest with him. He now knows that at best, he can hope for remission of the lymphoma, and how long that remission will be, nobody knows. He is also starting to realize that chemo does not involve only popping a few pills and has been asking about the side effects. He will hopefully find out more about this at his meeting with the oncologist tomorrow morning at 9:00.
He has also talked to Christian about how he would like to die, and that under no condition does he want to have life prolonging treatment. C. told him that it is very important that he put this down in writing as soon as possible and give this to his physician here (Dr. Levine) and his physician in Burlington. Mathias, once you are here it is important that you follow up on this.
Right now Dad is humming in the kitchen, unloading the dishwasher, and his plans for today are, what else, a trip to Cosco, and then in the afternoon he wants to watch "Home Alone" with Till and Corinna. So life is running along a kind of double track at the moment, on the one everything is normal, one the other we all know how precious every moment and day is. And both tracks need each other.
ooma ooma, Nicky
October 17 - 21, 2007
After feeling constipated and achy for a couple of weeks, Harold went to see a doctor on Oct. 17, who immediately recommended a series of tests which revealed the likelihood that he had lymphoma affecting his stomach and upper intestines.
The swelling of the lymph glands was causing his blockage, and that was reduced within a day or two by cortisone.
Another series of tests confirmed the lymphoma, and a biopsy was conducted to determine the type of chemotherapy that he will be undergoing. The results of that biopsy are expected on Tuesday.
Nicky and Christian happened to be here in Florida visiting when all this occurred which was of great comfort to Dad.
It appears that Harold might have an aggressive form of lymphoma, which ironically is good news because aggressive lymphoma can't survive chemotherapy as well as slow-growing lymphoma.
Because Dad is in such good health for nigh-83, and is such an optimist and a fighter, the doctor is recommending the strongest dosage of chemotherapy. That means he will feel much sicker during the treatment, but has a higher chance of complete remission. History seems to suggest that there is a 90% remission rate in such cases.
The swelling of the lymph glands was causing his blockage, and that was reduced within a day or two by cortisone.
Another series of tests confirmed the lymphoma, and a biopsy was conducted to determine the type of chemotherapy that he will be undergoing. The results of that biopsy are expected on Tuesday.
Nicky and Christian happened to be here in Florida visiting when all this occurred which was of great comfort to Dad.
It appears that Harold might have an aggressive form of lymphoma, which ironically is good news because aggressive lymphoma can't survive chemotherapy as well as slow-growing lymphoma.
Because Dad is in such good health for nigh-83, and is such an optimist and a fighter, the doctor is recommending the strongest dosage of chemotherapy. That means he will feel much sicker during the treatment, but has a higher chance of complete remission. History seems to suggest that there is a 90% remission rate in such cases.
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