Mostly Mister Man

I have good news from my clinic appointment yesterday.

A little backstory: I had a biopsy last Monday and until yesterday, I had no news. My regular oncologist used to give me preliminary results within a couple of days. When I was in remission, we were on the "no news is good news" plan until the final results came back. Final results take about a week, but I always knew something within 48 hours or so, even if that something was a big nothing that allowed me to exhale a little bit.

Since I'm not familiar with the protocols of my transplant team, this past week had the potential to be thoroughly unnerving. When I had heard nothing by Wednesday, I called the office and asked what the procedure was. The secretary said, "The doctor will call you."

Okay, great. When? Does this mean that they saw something bad and they want to wait until they have more information before they tell me? On the other hand, wouldn't they want to start treatment right away if they saw something icky in there? Then again, maybe they can't figure out the treatment until they have final results anyway, so they might allow me to wallow in blissful ignorance for a few more days?...Blah blah blah blah.

Of course I have been through this shit a million times and I have dealt with good news and bad news and I'm still here to tell the tale. I have gotten better at not obsessing about test results. Still, the anxiety lurks; it's like fighting a bug. You feel it in the back of your throat. Someone said something really helpful to me a few months ago...even if it is bad news, if you spend today worrying about it, you pay now and you pay later, which is kind of a raw deal.

And so, I took heart in my good blood counts and my decent energy and the fact that I don't have giant black circles under my eyes. I barely rest during the day now, in spite of the fact that I don't sleep much. I have not needed a single transfusion since being released from The Slammer. Yesterday mom and I couldn't get a cab to the clinic, so we jumped on a bus and then practically ran from 60th and 2nd to 68th and York in the freezing cold (we were running late) and I barely felt it.

I can take heart in these things. Then again, when I relapsed, I was feeling great, and this is why the Cyclone presides over my blog.

Anyway, the results are excellent. Not only do I have NO evidence of disease (under 5% is considered clinical remission - I got nuttin') but further tests show that my cells are 99% donor cells, which means that Mister Man is really moving in and setting up shop. He's ordered a pizza because he's thinking he might stick around a while. With any luck, soon he'll bring in his big screen TV and his favorite chair.

Mom tells me the doc whispered, "this is amazing" to her as I was getting up on the table. Even the examination felt perfunctory and took about ten seconds.

This is the same doctor who gave me a statistic that scared me so much I was ready to jump off a bridge and be done with it. I won't quote the number because it's kind of too horrible to commit to writing.

None of this means I'm out of the woods. No chicken counting yet. I could have complications from the transplant ahead of me, and I could still relapse. The idea, though, is that Mister Man will soundly kick the ass of any Leukemia that tries to rear its ugly head. We have to wait, though, until all his boxes are unpacked and his clothes are in the closet and dirty laundry has started to pile up and the mail starts coming without the change of address labels on it. We can't get comfortable yet.

And maybe I'm never going to be comfortable. That's an open question for the future. Even "future" is still a scary word, though, which is why we must temper our enthusiasm and hope with realism and strong nerves.

I know I have today, though, and that's my immediate future. I have writing to do and scripts to read and food to think about and prepare and eat, and time to spend with mom cooking and eating and watching DVDs and missing Neal every minute.

Thanks and love and be well, everyone.

Calling Fez

This morning I woke up at 5, because I'm still on steroids and sleep is for sissies. At about 6:15, I gave up trying to go back to sleep and decided to have my coffee and get on with it. I was puttering in the kitchen, waiting for my coffee to steep. I tied up a bag of trash, and a mouse leapt out of the bag and into the sink where it scrambled frantically for a few seconds and then dashed off to parts unknown.

I'm not especially afraid of mice, but there's something about an unexpected live animal springing up out of nowhere at 6 in the morning when one is not even properly caffeinated that is a bit startling. My verbal reaction went something like this:

"Ahhhh! Mouse. Mouse. Mouse. Mouse. Mouse. Mouse."

Needless to say, if the aged but still formidable Fez were here, we would not be having this problem. Fez would not even have to hunt and kill the mouse. Her very presence instills terror in rodents and other mammals. If you've met Fez, you know what I'm talking about. Waves of evil and ill will flow forth from Fez. She can clear a room in seconds flat.

On a related note, some of you have been asking about when my cats can come back, and the answer is that I don't know and I'm kind of afraid to ask. Meanwhile they are with Martha in their country home, being spoiled rotten. They even got to watch the first three seasons of "Lost." If all goes well, I should be able to visit them in about 8 weeks. Maybe I can bring home a little bag of evil from Fez to scare the mouse away.

More Utica (couldn't resist this...)

Utica

More about chili, Utica, Vartan

chili photos

Neal enjoying cake and family

Adventures in Electronics

My mother and I have both, historically, had somewhat ambiguous relationships to television. We rarely had a TV in the living room when I was growing up - it was always sequestered in a less central area. For many years, as an adult, I didn't even own a television. I ended up buying one when I went to graduate school in the late 1990s...a little 14" RCA from the Best Buy in Iowa City. I still have it.

In our recent years, before I got sick, I think it's fair to say that we both turned on the TV for at least an hour or two every day. I was also inclined to bingeing on hours and hours of trash TV now and then, which mom has never done in her life.

Since my illness, the TV and DVD player have been absolutely essential. I'm sure I don't have to explain this. While we rarely watch it during the early part of the day, nearly every evening we watch a bit of TV - everything from Judge Judy to Kitchen Nightmares on BBC America (NOT the Fox version...give us a bit of credit). These evening viewing times are also known as "Miller Time." This is when mom has her martini. Nothing can interfere with this. It's gone from being a casual habit to an iron clad rule.

We watch NY1 for the weather, of course, and BBC news. We watch all manner of DVDs together, and mom watches some on her own (Martha and I have gotten her addicted to "Lost", for example.)

Panic struck two days ago. I have an elderly DVD/VCR combo unit. I hadn't used the VCR in a long time. We have a bunch of Neal's videos that he "managed to collect" and we were ready to watch one. I had forgotten that there was a tape stuck in the VCR. When we tried to get it out, the whole thing stopped working, including the DVD player.

There's a PC Richard's in the neighborhood and mom went to buy a new player. No problem. We got one good and cheap. The only trouble was that my little Iowa TV is old and doesn't have the right hook-ups in the back. I now realized that my TV was a full decade old, which is an eon in this high-tech "buy a new one every year" climate.

We agreed that we'd have to go get a new television. Regular old televisions are cheap now, too, because everybody wants the flat screens. Rather than get another tiny one, we chose a 20' set from the website and made sure it was in the store. Mom set off (in the rain) with no real clue of how she was going to get this giant TV home. I have an elevator but there's a small flight of stairs up to the lobby, and a long walk to the back of the building.

Meanwhile, I sat and tried not to freak out. I was the one who was going to have to attempt to hook all this crap up.

Mom won't even attempt it; she won't even look at it. "I'm terrible at this. Just terrible," she says. She tells me I'm good at it, which is not entirely true. I have always managed to hook up my own stuff - TVs and VCRs and stereos, but I struggle a bit and usually have to try more than once to get it right. Also, usually, I'm alone and can rant and rave in privacy if things don't go my way.

Mom got a cab and the driver helped her with the huge TV box. I hooked everything up according to the instructions and nothing worked. We started calling friends to see if we could get some tech support. I spoke to my brilliant young "Massachusetts cousin" Faron who confirmed that it seemed I had done everything correctly. This is good news and bad news, needless to say. Kat, his mom, tried to get me some help, but her tech guy's son had strep throat, so that was out (everyone was sympathetic and helpful and I appreciate it very much).

I tried calling the Sony support line for help with the DVD player, but they kept cutting me off. I decided to call Time Warner and see if I could at least get the cable working. After getting transferred to the wrong place about six times, I got a very patient woman who even tried to help me with the DVD player (out of her purview). Getting the cable working was a matter of a few minor adjustments that are not in any manual.

I cannot fail to mention that meanwhile, it was Miller Time. Mom sat rigid with her martini, watching me, trying not to panic, frantically munching on sunflower seeds. Apparently I was the Miller Time entertainment for the evening. Even more gripping than "Lost", perhaps.

After hours of crawling around on the floor and scrambling around, in my weakened condition, I was completely exhausted. Mom and I agreed we would live without the DVD player for now.

By the way, I know some of you are wondering why we don't just use our laptops for DVDs. Mine is great with headphones if it's just me, but it's too small for mom and the sound sucks. Mom has a giant PC laptop but the DVD player software is apparently missing or disabled.

Anyway, spent though I was, I wanted to try one last thing. I shut everything off for a moment - DVD, cable box, and TV, and then turned it back on. I tried the DVD again, and no go. I tried the TV and I couldn't get the remote to work. It wouldn't change channels, it wouldn't mute, it wouldn't do anything. I finally lost my marbles.

As I said earlier, I usually do this type of thing alone. This time mom was standing right behind me when I yelled, "you fucking piece of shit" about nine times and threw my Hello Kitty hat on the floor. After my tantrum, I took a deep breath and got on the phone with Time Warner again. Remote in hand, I waited to speak to someone. After I had verified my account, the young woman asked how she could help. I pointed the remote again, absently, and this time it worked.

"I think I just solved my problem," I told her. I was very ashamed, suddenly. Fucking duh. I had been pointing the remote not at the cable box (which is now on the floor since it won't fit on the TV table anymore) but at the TV. For this I ranted and raved and threw my Hello Kitty hat.

Since I had her on the phone, I told the woman my problem. She said she could send a tech on Sunday for a small fee - no guarantees because they don't "support" DVDs and VCRs and blah blah blah. I suspect he or she will be better "support" than I am, though, and I'm hopeful that we will have success.

At this point, I walked away from the technology and made pasta for dinner. Don't ask me where the hell my energy is coming from.

My Miller Time came in the form of a giant bowl of Haagen Daaz chocolate ice cream with Hershey's chocolate syrup on it, at about 9 PM, in front of the TV.

Friday night is Loser TV night. If you're enough of a loser to be home on Friday, TV execs feel you deserve to watch Desperate Housewives or some other crap. Fortunately, we found a long string of British comedy on PBS, which was just what the doctor ordered.

Wish us luck with the DVD player.

I have to say, in closing, that I'm a little bit stunned that nobody felt moved to comment on the arresting beauty of Johnny Cash. You're all forgiven...I'm just a bit surprised, and well, a tad disappointed. I'll get over it, but I'm not sure he would. Fortunately he can't operate a computer (his thumbs get in the way.)

Much love and be well.

xo Leah

one more reason not to make fun of Utica anymore

I love you, Vartan!

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Chili Days supports arts center
Jan 28, 2008 @ 05:15 AM
By RENEE GAMELA
Observer-Dispatch

CLINTON — Abagail Friedel didn't have to think twice about which chili she wanted to sample Sunday during the Kirkland Arts Center's Chili Days fundraiser.

The 8-year-old Utica girl tried her own, of course. She was the youngest cook to prepare a chili variety for the arts center's annual event.

“Dad was my prep chef, and I made the chili,” said Abigail, who is a third grader at Hughes Elementary School in New Hartford.

It was the first time her family - parents Jeff and Christine Friedel and little sister Emma, 3 - participated in Chili Days.

Thirty varieties of chili were prepared by volunteers for the event, and 140 hand-thrown bowls were for sale, Executive Director Annette Clarke said.

“No two chilies are ever alike,” she said.

About 250 people were expected to attend the event, which Clarke said should raise more than $2,300 for the center. The proceeds go toward the center's many arts programs and classes, she said.

People could purchase a bowl, which ranged in price from $15 and up, and eat lunch for free. Others paid $10 to eat as much chili as they wanted, Clark said.

Mary O'Neill of Clinton brought her vegetarian chili that she's made every year, she said. O'Neill said she supports the center and all it brings to the community.

“Without it, I think there'd be a terrible void,” said O'Neill, who has lived in Clinton for 35 years. “It's a great arts center, but it's more than that. It brings the community together for a number of events.”

Vartan Poghosian, who is head of the arts center's pottery program, made about 100 bowls for the sale. Some of the money raised also will go to fellow artist Leah Ryan, who has leukemia, Clarke said.

The Other "Mister Man" (read below.)

This Is Leah's Brain On Drugs

For those of you who haven't had the pleasure, here is a sample.

I was on heavy painkillers for a few weeks. I don't generally take drugs, and I was in enough pain that I didn't really have any psychological effects from them at all. In a way, I guess I was high, but I kind of didn't realize I was high. Mom has told me several things I said and did which I do not recall, not even a little bit.

One day (see above) I guess I decided to write in my journal. I then abandoned it for weeks and when I picked it up again I nearly laughed myself out of my hospital bed.

At some point during my hospital stay, I got a pink slip from the post office. Mom was home at that point and our good friend Joanne was in New York, staying in my apartment and coming to the hospital every day. I know I have shared post office stories with some of you. The pink slip is like a bad penny. We call the Sunnyside PO "The Borat Post Office." There are often lines out the door, nobody speaks English (including the employees). Everything takes forever and everything is a problem. Once I got yelled at for putting a return address label on the back of an envelope.

Sometimes we just call the post office "Borat." As in, "Fuck. I have to go to Borat now."

The somewhat exaggerated example I always use that kind of sums it all up is that when you are on line at the Borat Post Office, you will likely find yourself on line behind three old ladies who are mailing live chickens to Romania (note that I said somewhat exaggerated.)

Anyway, when the pink slip arrives, it fills us with dread. The trick is to try to get them to redeliver to the building super and avoid visiting the post office altogether, which generally involves several phone calls, notes taped to doors, etc. Sometimes it still doesn't work.

So, when Joanne brought the slip to the hospital, I groaned and warned her about the adventures that might await her. She was game, but I wanted to save her the pain and trouble, so I made my post office phone calls and instructed her to tape the slip to the door with "PLEASE DELIVER TO BUILDING SUPER" written on it. The slip disappeared the next day.

Just a side note: Joanne turned out to be a Borat champion when she successfully reversed a temporary change of address that I had hastily set up when mom was away. She gets the Borat gold star of bravery and persistence.

Anyway, the package never arrived and I kind of forgot about it. A few days before my release from the slammer, I mentioned to mom that I thought I had a package floating around in the Borat stratosphere somewhere. She said, "Maybe it's that stuff you ordered from Amazon."

What? I had no memory of placing an Amazon order. My head spun for a minute and I saw myself on that A&E show "Intervention," addicted to prescription pills and online shopping.

"What amazon order? I didn't order anything from Amazon."

"Yes you did," she said. "Remember? You ordered a couple of things but you wanted free shipping so then you got a Mark Bittman book."

MARK BITTMAN?!

Mark Bittman is a food writer who we despise. We talk every week about how stupid he is, how consistently wrong about things, how he's systematically destroying the Wednesday food section of the New York Times with his idiotic food, bad writing, and lousy advice. It was as if I had drunkenly subscribed to The New Republic, or donated money to an organization that hates cats.

I was fairly indignant. "I didn't order a fucking Mark Bittman book," I told mom.

"Yes, you did," she said. "It was a cheap book and you thought it would be funny. I thought you had lost your mind, but you're the sick person. You can order what you want."

I still didn't believe it. I looked it up in my Amazon account, and there it was. Quick Cooking by Mark Bittman, along with The Simpsons on DVD (season eight...why ?) and a copy of "In Cold Blood." Undelivered. Sitting at Borat, no doubt.

I made the necessary calls, and by some miracle, the package was redelivered by the time I arrived home.

To be fair to Mr. Bittman, his book is pretty entertaining. The introduction states that nobody wants to spend more than 30 full minutes cooking (oh, really?) Many of his "recipes" involve cooking very expensive cuts of meat and fish in a pan with butter and sprinkling some parsley on them. Real artistry. I could go on, but I will spare you. If you want to read the book, I have a copy. Please don't buy it.

________________________________

Health-wise, things remain in the pretty-okay zone. Blood counts are good, energy is decent. We have renamed the donor cells, which we used to call "The Boy". They are now called "Mister Man." Martha coined this. "Mister Man" is also one of my nicknames for my cat Johnny Cash, coincidentally. Johnny Cash is kind of the ultimate good guy. One of my friends described him as a "nice young man." So "Mister Man" it is.

Thanks for staying tuned...love and thanks to all.

xxoo L

Neal Charming the Ladies (as usual)