some light at the end of the insurance tunnel

Hi everyone. It looks like Oxford is going to let me go HOME with hospice and medical care from Calvalry, until such time as it gets too much for us, and then we'll pack ourselves up and go to Calvalry itself. This seems like a good solution since I'm fairly self-sufficient right now and we can get help for the moms.

Apparently Oxford didn't think I was sick enough to go to hospice yet??? What the fuck. Anyway, the move may be imminent so stay tunesd.

xo L

Website

My beloved cousin Kat and her company have created a fabulous website for me complete with an upcoming play. Check it out (it's a work in progress but it's completely awsome.


Leah's Website

Visiting

Hi folks. We have a new plan for visiting. I am quickly becoming overwhelmed with calls. If you want to visit, please call Ed Cheetham. Even if I already spoke with you today and we've made a plan, Ed is trying to keep a calendar, so call him anyway. Also, please don't assume that leaving a message for Ed that you want to visit on a certain day means that's going to work - please wait for confirmation.

Also, plan on keeping your visits on the short side.

Finally, it's possible that I simply won't be able to see everyone....thanks for understanding.

Ed's contact info:

mobile 914-456-0477
work 845-437-5902

Email edcheetham@vassar.edu

Crappy news

Hi everyone. I am still in the slammer waiting to go to hospice. If you want to visit, please email - my energy is very limited but I would like to see people if I can.

xxoo

In the slammer

Hi everyone. I'm back in the slammer. Please be patient...I will post more details as I can.

xo L

of course, Johnny Cash is strictly a mac user

which may not may not be relevant to the rest of this post.

It has been a hard few weeks since getting the news that The Other L Word is back, and it has brought with it a host of symptoms and problems and drugs. It seems like every time one thing starts to feel better, something else goes to hell. I got it all into perspective this morning when I went to the clinic. My white count, which was 44 a few weeks ago, is now 3.9 or something. My pain is better. This means less of the pain meds and less of the oral chemo which has also been doing a number on me. So things are looking up a bit.

How about Junot Diaz winning the damn Pulitzer? How fabulous. I got to read and review it before it came out...one of the high points of my year. Apparently he liked my review, too, which is great. Reviewing books is scary. I always feel like I don't know what the hell I'm talking about. Who the hell am I to say the book is good? I would never want to be a fulltime critic for this reason. I am glad though, to see this book make good, because, well, it's really a good fuckin' book.

Love to everyone.

You won't think you want to see this movie, but you must.

(Ignore this if you're a Western MA person, because you are probably already in love with these guys)

I have not seen it yet but I think it's worth seeing. And it was made for British TV! How bad can it...well. It could be very good.

I worked with this group in the early 90s as a stage manager. They often collaborate with local community groups - a gay men's chorus and an experimental theatre company to name the two that I worked on. It was real, collaborative community theatre. Half the town on stage at the other half in the audience. It was some of the best work I feel I have ever done in the theatre.

Young at Heart

Drugs

I shared with you some earlier legacies of my “drug runs” in the hospital. You have gazed upon my doomed journal entries and you have witness the ruthless, gory murder of a truly unsuspecting cookbook (sorry, MB fans…really) Getting wasted on opiates at home is quite another adventure. Again, I don’t really get high per se; somehow I always keep missing the part where you wear a lamp shade and dance around wearing Mrs. O’Grady’s apron. Then again, maybe I have been brainwashsed by some 1950s liquor ad.

No, really, I know better. These are opiates we’re talking about. Getting high equals getting out. Nodding. Escape.

Okay, cool. That sounds okay-ish. I certainly have a lot of things I need to escape from. And maybe now Mom and I can really reminisce about our early days in the 70s on the streets of the East Village. I would sing and dance so she could shoot smack in an alley. Eventually an afterschool special was made. Yes, they did have Linda Blair in mind but she was too chubby, and although Cher wanted the role, they felt she was just a couple of years too old, and far too young to play my mother. The project, without a name attached, was doomed to fail. Boy, that neighborhood has changed a lot, huh?

Anyway, back to the present and me and my bottles of oblivion. I guess they work on the pain…. presumably they work better than most of the other crap I have lying around the house. And they do allow me to enjoy lots and lots of sleep.

Meanwhile, though, my fine motor skills are shot, my eyes don’t work, and the cats are pissed because I keep walking into them. And the sleep is strange; I have vivid dreams which I can never recall but which I think are probably far less interesting than that afterschool special I just made up (I have an absurd theory that if you reach a certain age in The Biz without using phraseology like “phraseology” and “attached to the project” you will soon find yourself even more non-famous that you’d ever dreamed).

Anyway, I often emerge from these dreams in the same way, in which someone is handing me a pen or a cup of tea or a hammer, for example (I told you the dreams were boring) and I, not the sleeping dreamworld person but the actual physical body in the bed, begin to paw the air (silently, thank Jesus) in an earnest attempt to retrieve the item. This is generally followed by an urgent need to get out of the bed, because there are important things to do. Unfortunately, I have no idea what these things are, which is well-balanced by the fact that I am probably not sound enough in body nor in brain to do these important things. Generally, I realize this once I’m about halfway across the room, and I turn around, and I go right back to bed.

Update and more

Well, not much of an update. There's not much of an update and there's not a whole lot tell. I have been feeling really crappy and have been on mucho medications ( see more on this in "Drugs"). Some of the clinic personnel have been infuriatingly unforthcoming with information and I think I need to make a dart board, I'm so pissed off most of the time.

The leukemia has settled in again, and apparently Mister Man is withering under it's horrifying gaze. We are treating it day by day. The big guns been fired and now we must get my white count down.

The good news, it's coming down and we're getting rid of a bunch of pills.

More good news is that the cats are totally settled in and have done much to lift the sprits of the house.

The other news is that my cat would prefer reading fine literature to watching Top Chef. I don't know if this reflects well or badly on me.

I will be updating more....

xo L

Of Catheters and Cats

A few weeks ago I started thinking in earnest about two things...one was getting my cats back, the other was getting rid of my catheter (for you novices, this is also knows as a central line...go watch some old ER reruns). I learned two things. One was that my cats could be tested for a nasty bug called toxplasmosis, which is especially verboten for people with weak immune systems, blah blah blah. My doc also said she'd need to give me a blood test related to my ability to clot and then they would look to scheduling the catheter removal, which is kind of a big thing where you get lots of drugs, etc.

Hurdle #1: cats test negative. All systems are go.

Hurdle #2: on the day I'm supposed to get that blood test, I go in to get my regular lab work done and am completely freaked out when I see that my white count, which had been three-point-something one week earlier, was now 29.5. This can only mean very bad things. My doc confirms my worst nightmares....they have seen leukemic "blasts" in my blood.

I said, "Fuck." My mom said "Fuck." What else is there to say?

I wish I could give you all some insight into what this means for the future (this is where an old-school disney-style demon of some kind says, "future? You have no future. Ha ha ha hahahahahahaha") but I don't know much. They are reducing my
anti-rejection meds in hopes that Mister Man will fight with the Leukemia, which is what he's supposed to do. I guess he's gotten comfortable eating frozen mac-and-cheese in front of the fake fireplace and can't be bothered. Whatev, Mister Man. They have also reduced the steroids to zero, and as a result of both of these things, I feel like shit. But as of today my WBC is going down and that's the first thing that needs to happen.

Basically, they tell me that they now have to try to manage this as a chronic disease (and the demon says, "chronic? What a joke! Sounds great unless you have an ACUTE, AGGRESSIVE DISEASE. But go ahead....") I have no idea what this will look like, or for how long. Yikes. But there are new trial drugs on the horizon, and who knows what they'll come up with. And if Mister Man will get off his ass, maybe we can beat it back.

Any way you slice it, though, it's shitty news, which is why this photo is apropos - yes, that is Fez and Johnny Cash, and Yes, that is my kitchen. Martha brought them Saturday. Thank you, Martha.

(and yes, that photo at the top depicts a tree growing, literally, out of an abandoned building, which also seems apropos. Especially since it's in Asbury Park, which is surely the most tortured beach town in the northeast. Mom, Martha and I went there on Easter. I'll post a few more photos soon.)

More soon - love - thanks -

Leah

I'am Babysit

This intriguing sign was posted in the lobby of my building several days ago. Apparently the person who posted it was confident that the reader (or readers) would know that the note was intended for them, and would also know who it was from. Still, it's easy to speculate that it's intended for a more general audience - an announcement to whomever is paying attention that "I'am Babysit."

I was nearly overwhelmed with the temptation to call the number and ask how it was going, whether the kids were behaving, etc.

No news is no news

I realize I have not posted anything in a while (I am still resisting using "blog" as a verb, as in, "sorry, I'm blogging right now" or "I shall not blog about Elliot Spitzer"). There is no big news to share. Clinic appointments continue to be uneventful, happily. My blood pressure is a little high, probably because of one of my medications. In general, though, things (blood counts, etc.) look good.

They are still tapering the steroids and I'm still suffering withdrawal symptoms, though I'm sure they are not as bad as they could be. I'm tired and I have a headache and I'm plagued with a mild case of the "fuckits" - I don't feel like doing anything. My life is very circumscribed, so when I don't have energy it can be a bit depressing. It's harder to distract yourself from, well, yourself, when you're exhausted.

I have been in excellent spirits thus far. Now it's been two and a half months, and though I'm not completely stir-crazy yet, I am pretty sick of all the restrictions and the paranoia. The idea that I have a vulnerable, brand-new immune system is just completely abstract to me and yet I'm constantly worried that I will be possessed by some diabolical germ infestation, which can come from anywhere, even from inside my own body. I don't obsess about this all the time, but every decision I make - minute, mundane, and otherwise - is ruled by it. Every cough and hiccup and tummyache can be terrifying, and, to an extent, it's up to me to decide whether it warrants concern. I have had a cough for the past several days, and I asked the PA in the clinic very specifically what symptoms I should be on the lookout for. What developments, SPECIFICALLY, should trigger a phone call? I don't want to call them and have them shrug and say "I dunno". It's as if I'm calling a mechanic to ask for help baking a cake.

Hyper-vigilance combined with lots and lots of free time...it's an interesting life, to say the least.

And so, I am a little down, a little unmotivated, a little bit sick of it all. Some of it is chemical; all of it is par for the course at this point. I'll feel better once I get my energy back, I suspect. Maybe it will be today.

Hope everyone is well....stay in touch.

More cancer drama

As I was finishing up the post below, I realized that there was a message on my cell that I had not noticed earlier (my cell does not always ring in this apartment.) It was from my doctor's office. The PA had left a message saying, "Please call the office."

Swell. It's after 5:00 and I have no clue what this is about. Are they calling to apologize for not reassuring me yesterday (see below.) Doubtful. Are they calling to say that they have seen suspicious activity in my blood but they need a biopsy to be sure? Perhaps. Are they calling to say that my cancer is back and there's absolutely no hope for me this time? Maybe. It could be anything, really. They could be calling to say that Hillary is going to beat Obama.

Needless to say, having stepped off the roller coaster just a few hours before, I now had to buy a new ticket and step back on. I called the answering service and spoke to the covering doctor, who said she would call my regular doctor. They called back very quickly to say that the level of one of my meds was too high and they want me to stop taking it this weekend and go in Monday to get the level checked again.

Whew.

Just one question. Why the fuck couldn't they have just said that on my voicemail???

Round and round and round we go...

Roid Rage

Yesterday, mom was supposed to get on a train at 7 AM and go home. I woke up feeling really bad - terrible fatigue and a massive headache. I have not really had any symptoms like this since I got home (or, ahem, any symptoms of any kind?) so we were pretty freaked out. I felt exactly the way I used to feel right before I got a fever. Fever is bad. Fever means the ER, the slammer, mom doesn't get to go home, I cancel all my weekend social plans in exchange for a smelly hospital room, and who knows what kind of roommate, and IV antibiotics which may or may not make me break into a horrible rash. And stupid hospital volunteers and underfed, lightheaded forgetful nutritionists. And crazy, sadistic covering weekend doctors. Aarrrggghhhhhhhhh.

So of course I went there. I was sure it was doomsday. In fairness, I am not completely insane. Most people are hospitalized after transplant for one thing or another...I have been lucky so far. That said, I have had my hospital bag packed and ready to go since the day I got home two months ago.

I consoled myself with the fact that I had just been to the clinic and that my counts are good. Still, mom and I were worried enough that she didn't get on that morning train.

I called the doctor when the office opened at 9. I told the PA what my symptoms were and she said she'd talk to the doc and call me back. She called back and said the doctor "didn't know what to make of it."

They give you such big speeches about calling whenever you notice ANYTHING unusual. I tried to take comfort in the fact that they clearly weren't alarmed, but I still knew that I felt horrible and that just didn't seem like a good sign. I lost my appetite, I felt nauseated, I barely got out of bed all day. It seemed like a downward spiral.

This morning I felt a bit better when I woke up at 7, and better still as the morning wore on, so we made an executive decision to send mom home. I was a little nervous about it, but I didn't want the whole weekend to be blown for her.

After she left, I thought, hey. Why don't I Google withdrawal symptoms for the steroid I'm on, since they are tapering it down every week. Guess what? Classic withdrawal symptoms are headache, fatigue, loss of appetite, nausea. I found this same information over and over and over.

Why didn't my crack medical team suggest that this might have been the trouble? Who knows. A few weeks ago the PA rattled off a list of possible side effects, and honestly, I can't remember what they all were, but I don't think headache and fatigue were among them.

Anyway, I got over being pissed off that this apparently really obvious information was not offered to me. I'm glad I'm not in the slammer being tortured by strains of Entertainment Tonight. I'm glad I'm not wearing pajamas. I'm glad it looks like I will be able to see all the friends I was planning to see this weekend, in my own home.

Life is good-ish.

Food?

So, the response to my 99 cent store question has been excellent. You can read the comments and see for yourself. A lot of people emailed, also, and many of them said the same thing: no food, no toys for kids, nothing from China, no personal care products.

I have bought all kinds of stuff at the 99 cent store, like toothpaste (name brand only) and I did experiment with food, too, but I was scared off by exploding cans, etc. Another time I bought something that I thought was olive oil because it said both olive and oil on the bottle (though perhaps not in that order.) Later I read the fine print which said something about how it wasn't food, ie, don't eat it, because it's not for human consumption. I looked it up. Apparently they make oil out of the crap that's left over after they press the olive oil. I suppose you're meant to use it to grease a squeaky hinge or something? But it was in the food section of the store.

I have to confess that I bought some cumin at the 99 cent store a couple of weeks ago. This seemed okay to me for some reason.

This discussion has given me much to think about. We have this crazy store in Sunnyside called the South Pole store. It has everything from little bottles of hotel shampoo to real gold jewelry. They also have food. Technically, it's not a 99 cent store, and therefore I feel no qualms about buying food there, sometimes for 99 cents. I realize that this doesn't make any sense.

I have been lured into 99 cent stores for the following reasons: I was really really broke, I wanted to be entertained, and/or I was looking for a bargain/wanted to feel like I was getting away with something. Sometimes all three.

There are a couple schools of thought. One person wrote: "I cannot in good conscience, or even in a not very serious one, support the whole sweat shop industry thing. The american obsession with a bargain has brought the scourge of the dollar store on itself. There is no such thing as something for nothing--or even 99 cents." Others have said that we who shop in 99 cent stores are getting over on the companies who mark everything up way too much.

I'm not sure what to think. Aren't clothes from The Gap and Banana Republic made in sweatshops, too? That's why it's best to buy them at the Goodwill (that's another topic.)

Perhaps my favorite speculation so far: the people who buy pregnancy tests at the 99 cent store also bought their condoms there.

St. Pat's for All Parade

I went to the St. Pat's for All parade yesterday, which is right in my backyard. It began as alternative to the 5th Avenue parade when gay and lesbian groups were banned from marching there. What I love most about it, though, is that it's not just a gay parade...there are political and cultural groups marching from all over Queens (and even Brooklyn...GASP).

I have posted a few photos here but there are more on my Flickr page:

StPats

Where do YOU draw the line? An informal survey.

As many of you know, I am a little bit obsessed with 99 Cent stores.

I have learned many lessons from 99 cent store shopping.

1. If you buy an extension cord for 99 cents and it sparks and turns the wall black, it is no bargain. Now you have to go spend $3.99 on top of that 99 cents! WTF!

2. Lightbulbs from the 99 cent store that have typos on the packaging usually last about 2 days. Now you have to buy more lightbulbs on top of that 99 cents! OMG!

3. 99 cent stores often have excellent bootleg Hello Kitty merchandise. You can tell it's fake because it says "Helo Kity" or "Kittty" on it.

The list could go on and on, but I will spare you.

Here is my question for those of you who shop at dollar stores or 99 cent stores regularly: where do you draw the line? What, if anything, would you be unwilling to purchase at such a store?

For example, I draw the line at food. Also, I recently saw a pregnancy test at a 99 cent store and I don't think I would go there either.

I am dead serious. I really want to know. If you don't want to post your answer as a comment, send me an email and I will post the answers (anonymously) if I get any. Which I hope I do. Because this really does matter to me, okay?

More Sunnyside Weirdness

Trash




"My Broken Christ." How's YOUR broken Christ lately?




Lunch



I'm sorry, what??

Cheap Merchandise

Fuckin' watch stopped again.

The Day The Music Died

It's hard to really explain this picture...if I had a real camera and I could get up on the roof of my building, maybe the picture wouldn't need an explanation.

This child-sized guitar has apparently been thrown out a window. It's on the ground in the (locked) courtyard of my building.

What can this mean? Some perfectionist yuppie dad who fully expects his eight-year-old to be the next Eric Clapton just couldn't listen to "House of the Rising Sun" one more fucking time? There's no way of knowing what the story is here.