Wednesday, November 21, 2007

November 21, 2007

Dad and Corinna are on their own now. Roland left yesterday after visiting for a week.

Dad went to get his second treatment yesterday. He ordered a cab and when the cab was late, he drove himself. Corinna was proud that she took a cab all by herself to get back home and order lunch and drive back to the clinic.

The treatment took about five hours this time. No reaction. Very smooth. And, of course, Mr. Stubborn drove himself back home.

And, Mr. Very Stubborn stuck to the schedule: They went walking. Walking, I asked? It's dark! Yes, but they went walking right outside the apartment. That is a first! I am glad to see that, because that sets up a whole new pattern in which they are freeing themselves from the dependency of driving.

Dad reports that he has lost most of his hair. His head is kind of like a baby's with just fuzz on it, he says. Unfortunately, I can't post a picture.

Friday, November 16, 2007

November 16, 2007


Hi guys. The photo shows the blood results that Dad was so nervous to get. It’s a rollercoaster of emotions for him. Although his hair is falling out in big bushels he is still the positive big fighter. Then again if the Doc doesn’t call him back it throws him off for the whole day. I have never seen such a big fighter in my life and I’m not sure if I like the idea that he might be a role model for me…. Umma umma Ro


Tuesday, November 13, 2007

November 13, 2007

Dear Everbody,

so now I guess it is my turn to try myself on my literarily faehigkeiten:

After receiving a letter from Mathias with a small description of the todo’s and not todo’s I was somewhat horrified to come over. But for the first day here it all turns out to be like it always has been in the last one or two years when visiting: Now that Dad doesn’t work anymore he has more time freed up to go on .. I mean to concentrate on social contacts. ( Since I know that this is going end up in the “Krankheit Report” I had to put the last sentence and the coming sentences in that form, aber wir verstehen uns schon, gelle?) Not that I don’t feel that Dad in his age isn’t entitled to have that right, but I couldn’t get my body to do what my mind was telling me. BUT NOW that Mathias hand the genius Idea (auch ein blindes Huhn findet ein Korn) to hang a List in the kitchen of how Dad and Corinna MUST structure the Day, it has gone into my blood bzw as I said before: into my body. Finally I can relax! I always hated the fact that one couldn’t plan with this family and now there is a plan. May I suggest (? Yes you may… thank you!) that there has always been a plan but never
admitted.

Here the schedule: Or as Mathias called it the “ Camp Schedule” (Or as we behind his back call it the Gauleiter Liste.)
11:00 leave for golf course
3:00 Nape time for Bonzo
3:30 Kaffe und Kuchen
4:30 The Walk
6:30 Dinner
7:30 The Swim
(Signing off with:)
Remember: WASH YOUR HANDS !!!!

So : THANK YOU Mathias ( and I mean it)
Nothing new : Sunday was the tenth Day after the chemo and he has no side reactions. He is so strong in his mind to go through this with a positive attitude. For example he told me about the fact that he had to sit for 10 hours in a chair to get his first chemo. And that he thought it was like a trip in the plan to Europe where you have to sit so long too and the outcome is a good one. Mensch Maier!! beat that….

Love Ro

Friday, November 9, 2007

November 2, 2007

Dad went for a blood test on Wednesday (two days ago) and it showed that his white blood cell count (WBC) was low. His average over the years has been around 5.

Just as the chemo started, they measured and it was 11, which is one point higher than average. Average is 2 to 10.

And this week's reading is 0.7. That means the Neulasta drug MAY not be working the way they thought. But we don't know yet. They said they will do another blood test next week.

Neulasta is supposed to draw out the WBC from the bone marrow to help the body fight infections.

But of course, Dr. Krankheit knows exactly what is wrong. On the ride home from the clinic, he already had at least five theories. And he was already prescribing appropriate remedies.

It started even as we were pulling out of the parking lot.

"I will skip golf tomorrow to rest up."

"No, you WON'T skip golf. The doctor said to exercise as much as possible!"

"Yabut, Low WBC means ..."

"You don't know what low WBC means! You are not a doctor."

"Yabut, low WBC means..."

"All it means is that they want to take another test next week. That's all!"

So, since he was getting nowhere with me, as soon as we get home, he turns to his loyal and trusted friend: Google. (Actually, it has been a menage a trois lately, because he has this voice "Paul" that reads everything on the screen for him. So, Paul, Google and Harold are always off in the corner these days.)

Oh, and now he knows EVERYTHING about Neulasta and the negative and dangerous side effects it has. And promptly, in our incessant game of one-upmanship, he comes over and tells me about how Neulasta can ITSELF cause certain types of cancer.

I don't look up from my laptop screen (situated on the dining room table) and I say, "Dad, I heard Paul say that those cases were in women with breast cancer."

He turns and walks away, gesticulating with his arms and silently moving his mouth as if he is making fun of a teacher behind his back.

But seriously, this thing has got him pretty bummed. He feels like he is a student that failed an exam.

This means he has to be even more careful about not catching a cold. There is a strict regime now of hand-washing after returning the house.

Sunday, November 4, 2007

November 4, 2007

It has been three days since Harold's first treatment. And there has been virtually no difference in how he feels.

Well, except, oddly, for one thing: He has a very sensitive jaw. Now, if you ask me, it is because of all of the unfiltered bullshit he jabbers all day long. But to be fair to him, it might be drug-related because he feels a sharp pain when he first bites into something and then it subsides as he chews.

Anyway, I only go into such minutia as a way of saying that he is still completely himself. Much to his and everyone else's comfort.

For the last three days, all three of us go to the golf course in the morning. We whack some balls. (For a change, he is not whacking mine.) And then we have lunch at the club house. Then it is back home.

A little nap.

I try to squeeze in some rollerblading in the morning or afternoon.

Then coffee at 3:30.

A little more crossword and it's off to the walk.

After the walk, there's a light dinner, and then Corinna forces me down to the pool for an hour of swimming.

It is a rigid routine here.

Today, she granted me permission not to go swimming and she went by herself. In the dark. By herself. In the dark. An hour. By herself. And then whirlpool. By herself. Okay, okay enough amazement already.

Thursday, November 1, 2007

November 1, 2007



Corinna, Dad and I arrived at the clinic at 9.

Dad sat in a over-sized lounge chair and was hooked up to an IV for the rest of the day. He was in great spirits throughout. As you can expect, he was the charmer of the clinic. There were about 15 other people who were getting treatment, but Dad seems to attract attention and reflect optimism like water attracts the sunlight and sparkles it back.

Corinna and I took off to get him lunch. And after we joined him for eating that, we took off to go grocery shopping. We picked him up around 5 and he was still his chipper old self.

It was another relieving step to become familiar with this part of the process. We all came away from the clinic feeling that this whole chemotherapy is not as much of a nightmare as we all believe it is before we know it.

Wednesday, October 31, 2007

October 31, 2007

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.

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.)

October 28, 2007 Puzzle

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.

Saturday, October 27, 2007

October 27, 2007 Making eggs

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

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

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.