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