Volume 1 Book 1 Part 2 of

by Steve Schalchlin
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April 1996. El Lay.
If you read between the lines you can see
that my health is declining but
I try to take every "good" day as a clue
that I'm getting better. I'm wrong.

Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1   2   3   4   5   6  

April 1996

Thinking out loud about curry & Kolsky Scary test results. Bad dinner. Frustration & Crixivan A Perfect Day. Tony's aunt, Al, a teapot, Potsie
7   8   9   10   11   12   13  
Stanley, tears, & Ad-Immune Art's Deli with Stan  Steve at Troubadour & Disney Wkshp  ASCAP Disney cocktail party  Provoking a reaction 
14   15   16   17   18   19   20  
Back from Vegas!  Lost insurance, Kidney stone from hell  Great day. Cal State Northridge. L.A. Times interview, visiting David  Another stone, D. Robyn's show  A perfect day. E-mail from some flounder. 
21   22   23   24   25   26   27  
A fundie story.  Fun at Genghis. Feeling weak.  NAS opening. Losing strength.  ASCAP Film & TV. Recording with Alan O'Day.  Steve Yells at Dr. Frank Dr. Steve & Corky's Kids at Work 
Writing with Jim L. & Recovering Slowly 
28   29   30   Back to Diary Home Page  
Quiet Day of Rest  Gay Church & The Campfire  Note From Jen, Visit With Dr. Ellie 

April 1996 

Monday, April 1, 1996
Thinking Out Loud about Curry & Kolsky

Today, I have a few appointments but I'm still in recovery mode -- healthwise. The good news is that Jim Latham the Producer gave me the rough mix of the choir parts for When You Care yesterday and they are GREAT! (In The Last Session, the character of "Jim" is based on him.) We'll have the whole score recorded and ready for pitching in the next two weeks. On Wednesday I'll be going over to George Merrill and Shannon Rubicam's ("Waiting For A Star To Fall") to record "One More Song" with them and with Yve Evans.

Barry Kolsky, the publisher finally asked for a copy of the tape. Barry is an old friend of mine and I've been taunting him for months trying to get his attention about this music. He's had some good successes in the biz, so I think he sees me as just another "suit" trying to look like a songwriter. Then two weeks ago at the NARAS (National Academy of Recording Arts and Sciences) bowling bash, he came up to me and said that someone in his office had seen the reading of TLS and that person had been "blown away" by it. Hehehe.

I also lately have had an incredible craving for curry chicken. So Jim Latham took me out for lunch yesterday and I had a huge plate of it. I'm so glad Dr. Xi approves of curry chicken.

Healthwise, I'm still a bit unstable. The diarrhea has not let up at all, although I had a good day on Saturday. Yesterday and this morning, however, were awful. I'm really going to pile on the Immodiums and iron pills today to see if I can do something about it. It's the one thing that's going to kill me, I fear. It's been a plague on my house for two years. Oh, well... One thing at a time. Today: music! 

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Tuesday, April 2, 1996
Scary Test Results. Bad Dinner

Yesterday Dr. Ellie told me that my viral load is 325,000 parts per whatever, which is astonishingly high. This is terrible news. When it's over 40,000, you're in very high territory. To be in the hundreds of thousands is scary as hell. So, we're going to repeat the test to make sure it wasn't something weird. But this could explain why I've felt so shitty the last few weeks. My t-cell count is 40, which is another little drop. But since it's not a significant drop, Dr. Ellie thinks perhaps the test may just be off. Who knows?

It also means changing anti-viral medications. Most of them make me too sick to function, so this is going to be fun.

Last night I went to dinner at a Thai restaurant (one of my favorites) and halfway through he meal, I got up and had to throw up. Poor Marty -- my friend I was with. I'm such interesting dinner company.

So I went to the hospital yesterday and had new blood drawn by the cute guy who does it very painlessly; read a Newsweek from a year ago talking about the "new" Taurus and gave the lab some spit, too. Last month, they lost my spit when they were testing for infections in my lungs. Now they have new spit.

I don't want to panic over all this. But it just makes me crazy to get our show on the boards. I'm ready for it to happen now!!! 

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Wednesday, April 3, 1996
Frustration & Crixivan

Oddly enough, dear reader, I'm feeling a bit better this morning. Last night, though, was diarrhea hell. Nothing helped. Rice. Immodium. Iron pills. It was really just the worse. So I drank tons of gatorade and water and just kept the bathroom as busy as the ladies room during a break in a Michael Bolton concert.

Today, I go to Malibu and record with George Merrill & Shannon Rubicam, and Yve Evans. It will be a very nice diversion from recent events.

On the public BBS (computer bulletin board) where we have a AIDS discussion group, one "expert" told me to not panic over the blood test. He described the difference between 40,000 parts per whatever and 400,000 parts per whatever as "one log." And that the error rate on the PCR test (which measures viral load) was a half log. He did say that it was clear, though that my anti-viral program was not effective. He suggested adding Crixivan (another new protease inhibitor) to the regime. Of course, Crixivan is in very short supply and has to be ordered from only one pharmacy, etc. So I guess I'll be doing some investigation to see how I can manage that. It won't be widely available until October. There is also Ritonavir but it's supposed to be hyper-toxic and very debilitating. Ah, choices.

Harriet told me to just hang in there and do the music. Rev. Steve told me to have faith in God and meditate. Meditate. Like I could ever slow this brain down long enough to meditate. I think I'll just go to my blessed and all-accepting piano and disappear into the music that makes me alive.

We talked to Carl yesterday about the show. Carl is our young friend who wants to produce the show. He's very enthusiastic and works at a great place in New York, but he's never produced anything in New York yet, so we're all kind of thrashing around in the dark at this point. Our frustration is that we're waiting for him to do something and he's waiting for us. We spoke of starting in Chicago and then going to New York, really, neither of us has a the faintest idea of what we're talking about. It's so maddening. 

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Thursday, April 4, 1996
A Perfect Day

Yesterday I had a perfect day. No diarrhea, no nausea, no vomiting, very little coughing. I can't remember the last time I had a day like that.

It was even more perfect because I get to spend the day with three of the greatest human being on this planet, Yve Evans, George Merrill & Shannon Rubicam. And together we recorded two more songs from the show, One More Song and The Faces In The Music. Once we do the vocal for the choir song, When You Care, the whole "original cast album" will be done.

Well, all the songs will be recorded, anyway.

Harriet called me yesterday telling me about a friend of hers who is representing some new product called Adimmune which is an immune booster. So, I spoke to him last night. He said the makers are touting that this "natural product" will boost my t-cells from 40 to over 300 in only 20 days. Given the fact that this is almost an impossibility, (and given the fact that PWAs are constantly barraged by these kinds of claims), I can only say that I have a healthy skepticism. But, it's free and I guess I could be a kind of guinea pig, so to speak.

Most of the time, these kinds of claims come from people wanting a lot of money. Then when they don't work, the supplier takes his money and leaves you there sick as hell and broke. At least this one is free and it's only for 20 days, so I'll give it a shot. I suppose this means I'm at the "it can't hurt" stage. Or the "what have I go to lose" stage.

All I know is that yesterday I had a perfect day. 

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Friday, April 5, 1996
Tony's Aunt, Al, A Teapot, & Potsie

Two days in a row. Two days where I had no diarrhea. I'm still coughing but it's not like it was last week.

Tony Trupiano (my radio call-in host friend in Detroit) called me last night and asked me if I'd call his aunt who lost a son to AIDS about six months ago. He said she's not handling it well and he feels like I could be of some help. I told him I'd be happy to call her. I don't know what I can say. How does a stranger fill the void of a lost son?

Today Al Martinez is coming to get a tape of songs from the show. He's a columnist for the L.A. Times who did this wonderful column on a lady friend of mine, Toni, who has AIDS. I'll tell you all about Toni sometime. Anyway, after I read his column on her, I sent him an e-mail and told him I thought I had an interesting story to tell. Then I kept sending him notes about once a week, updating him on news and telling him stories. Finally, last week he said he wanted to write about me, but that first he wanted to hear all the music and see the video of the reading and "see what [he was] getting into."

Today I go see Dr. Xi. I have to buy a new teapot from him cause I broke the other one yesterday morning by pouring cold water into it when it was hot.

My bro. Corky sent me e-mail and asked me what I meant when, on a songlist page, I say how everything in the song Connected is true except that the Potsie story really happened. Well, in the song, the hospital scene is described as a dream. But in real life, Potsie -- Anson Williams -- actually appeared in the emergency room when I was there with pneumonia (PCP). In our show, we describe the scene and then "Gideon," the lead character who, like me, is living with AIDS, says, "I decided to live that day because I didn't want the last celebrity I ever saw in my life to be Potsie!" 

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Easter Sunday, April 7, 1996
Stan Freeman, Tears, & Ad-Immune

Stan Freeman's coming over soon. Stan is one of the world's great pianists, especially when he does Gershwin. He turned 76 (I think) this past week and we decided it would be nice to spend Easter together in some nice restaurant. Stan gave me one of my greatest moments in recent history. You see, he's a very intellectual guy and has basically done it all and seen it all. He let me use his apartment and his piano during the writing of TLS while he was in New York playing himself in a Marlene Dietrich show.

Anyway, back in January when he came back from New York, I played The Group for him and we told him about the musical.

He hated it. Called it lugubrious.

Then, in February when we finally did the first reading of the show at David Rambo and Ted Huyck's house, to my horror, Stan was plopped right in front of me in a big chair. I was terrified and during the reading, as I sang the songs, I avoided his eye at every opportunity.

But by the time we were done, I had completely forgotten about him. I was shaking hands and thanking everyone for coming when I suddenly turned around and there was Stanley. His face was covered in tears. He was crying like a baby. He hugged me tightly and said, "It's brilliant. It's brilliant."

And he repeated this mantra when we did the more formal reading at the Cinegrill a month later. That's when I knew we had something. He wouldn't have been shy about hating it.

Healthwise, I'm staying steady. A little diarrhea this weekend but not hideous. Dr. Xi was very happy at my last appointment. He took my pulse and pronounced it strong. He looked at my tongue and said it was nice and pink and he liked my skin color. He praised himself for stopping my diarrhea. I mentioned to him that I had also been using Immodium and iron pills rather heavily, but it's hard to tell him anything with his broken English. He told me to stop the Immodium. Well, I did, and the diarrhea started back. So, I decided to give the Immodium another week's try.

Also, I've started on this new experimental "natural" substance called "Ad-Immune." I met with the representative on Friday and I have to take it with liquids and food three times a day. I think I'll time it with my protease inhibitor. 

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Monday, April 8,1996
Art's Deli with Stanley

Last night we sat out in an open porch at Art's Deli on Ventura Blvd. enjoying the warm, dry night air from the Santa Ana winds. Stanley smokes about a hundred cigs a day, so he was able to smoke to his heart's content and not get it all in my face. When he visits, he spends half the time trying to get out onto the little terrace where we keep the cat box. Usually he ends up ripping down the curtains and destroying everything within a half a block.

Jimmy and I were laughing. We watch him like a 3 year old. If he goes near the kitchen we ask him what he wants so we can get there first and serve him, or he'll break every dish in the house.

The big news is that we're going to Vegas this weekend because my folks are driving in to visit! I'll give you all the details as it unfolds. It'll be nice to get out and do something different. 

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Tuesday, April 9, 1996
Steve at Troubadour & Disney Workshop

Last night I played the world famous Troubadour. Brett (the Executive Director of the National Academy of Songwriters -- NAS) was hosting and he put me on third in a incredible line-up of all the past winners of the Acoustic Artist of the Year shows. I did very well and was really happy that Lowen & Navarro, a group on Parachute/Mercury Records were there. I've loved them for a long time and always wanted them to hear my music.

Brett introduced me and gave me credit for helping create the Acoustic Underground, and for keeping NAS going when it was at its lowest. Then he mentioned my having AIDS and trying to survive it by writing music. It was fascinating to look into the faces out there and see the mixture of wonder and sympathy and puzzlement. I sang Connected, which contains the whole story of my first visit to the hospital.

But with the sublime was the hideous. Once again the diarrhea demons were making me miserable. The drive back from the Troubadour goes over Laurel Canyon Blvd. which is a long "mountain" road, dark and winding. My stomach felt like it was going to explode. When I got home, I just looked at Jimmy and said I was really sick. And once again, I practically lived in the bathroom for most of the night. Couldn't stop it to save my life, and this morning it's still bad.

Of course, Thurber the Cat doesn't mind at all. You see, to him the toilet is the cat scratching place. He knows I'm trapped there with little else to do, so he forces the door open, stands there meowing, demanding attention. If I don't scratch him, he puts his face up against my hand and pushes against it -- so cute. He helps me forget my stupid misery.

Last night also, Jimmy and I were on the Disney lot for the ASCAP Musical Theatre Workshop. Jimmy went to school with Stephen Schwartz, who just won the Oscar for "Pocahontas" and he was there. Also there were Marilyn Bergman and Dean Pitchford. It was fun reconnecting with old friends. I'm just sorry I had to leave early to get to the Troubadour.

At one point -- Dean told Jimmy this at the break -- they were critiquing lyrics by one of the workshop attendees. Dean made the comment that this person's lyrics were generic and did not have enough "nouns." He looked over to see if I was there because he was going to point to me and say, "And there's a man who fills his songs with nouns." But, alas, I was across town by then. I would have loved that moment. 

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Wednesday, April 10, 1995
ASCAP Disney Cocktail Party

Yesterday I had a good day (healthwise) at long last. I know you must get tired of all my travails, reader, and I don't mean to go on at length about them, so I promise that when I have good day, I'll tell you.

Last night was kind of "Hollywood." We went to the Disney lot to a cocktail party held by ASCAP and Disney celebrating the new west coast theatre workshop. It was held in the rotunda of the new Disney plant. The building has seven huge statues of the 7 dwarves holding up the roof. In the room itself, which is very beautiful -- even the chairs had mouse ears carved into them -- there were about a hundred people milling and eating. In the center of the room was a semi-lavish spread of pasta, seafood, crab cakes, sushi, etc. In attendance were such luminaries as Alan & Marilyn Bergman, Stephen Schwartz, George Furth the actor/playwright, lots of Disney and ASCAP people, etc.

I finally got to tell S. Schwartz congratulations on his Academy Awards for "Pocahontas" and to tell him how much I love the song, "It's An Art" from the musical "Working." I got to sit and talk to Dean Kaye, a well respected publisher who is on the board of ASCAP. We talked about the internet and about how difficult it will be for creators to protect their works from being copied and uploaded onto the net.

Earlier in the day, I met with David Robyn, the young songwriter I've been helping. And after that I had gone down to NAS to get some material for their home page. So, it was a busy day, but a good day and this morning I feel pretty strong again.

My friends worry about me "pushing" myself when I get out and do so much after coming off a "bad day" as they call it. Well, my opinion is that if good days are scarce, then I should use them as they arrive. If I wanted to, I could literally spend the rest of my life in bed and no one would complain. But that's not how I wish to live.

If I'm sick, I stay in and read. If I'm able to get out, then I go out. We have to choose how we wish to live in this life and this is what I choose. I have to go by my own instincts. I feel if I start getting precious about my body and about my health, I'll become an invalid. I've seen it happen. And then I'll just fade away and die. I'm going to fight for every single breath and every single day.

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Thursday, April 11, 1996
Provoking a Reaction

Today I called our producer, Carl White, in New York and told him that I was tired of waiting on everyone else to make this show happen. I told him I was arranging for us to do another reading at the Cinegrill the first week of June. Well, I guess that provoked a reaction because he called back and said he felt we needed to do a reading in New York, not L.A. and that he would get on the stick and get it done.

That's what I want to hear. ACTION!

Last night we went to the last theatre class and heard some good music, especially Marie Cain's quirky "The King & Me," which is about a songwriter's experience in Memphis during Elvis Week. Lots of funny material.

And tomorrow we go to Las Vegas to visit my folks and my Aunt Frieda. That'll be nice, just getting away, so I won't be updating this page until next Monday at least. Then I'll tell you all about Vegas! 

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Monday, April 15, 1996
Back From Vegas!

Back from Vegas!

Great fun with Aunt Freida and mom & dad. We drove about 4 hours across the desert to Vegas and made it in there in the early evening just in time to be introduced to their favorite new game: Mexican Train, which is played with Dominoes.

Aunt Freida (who lives in Vegas because she has emphysema from years of smoking) lives in a new condo development where all the homes look alike. We decided to bring the video camera and tape them answering the door. But, we got the wrong place and instead of Aunt Freida, we took a video of huge, angry man coming at us looking drunk and very annoyed.

Mom had bought me a new rice cooker, which I really wanted because rice is good for me and I hate cooking it in a pot. Later on we went to the casino and I won about $20 at the blackjack table.

We also went downtown to where they've covered several blocks of streets with a light canopy and turned the whole thing into an outdoor mall with a fantastic light show every hour on the hour.

We played the new recordings of songs and they cried and loved them. (My mother will cry at the drop of a hat). So, we played a little more and then drove back home today.

The one sour note in all this is -- here we go again -- my diarrhea. Today I am very weak. It has been just horrible and I haven't stopped it for many days. Now it's beginning to really drag me down. I can tell I'm getting weak when my ears start to pop. I don't know how I'm going to stop it this time.

Two years ago, I spent over two weeks in UCLA Medical Center with this and I finally stopped it with thrice daily shots in the stomach. First, I'll pare my diet down to BRAT (Banana, Rice, Applesauce, Toast) and drink lots of liquids. Wish me luck. 

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April 16, 1996
Lost Insurance, Kidney Stone From Hell

Yesterday seemed so normal at first! But it turned into a day of good news, bad news, great fun and then a night of -- well -- terror and pain.

First I went to see my primary care physician, Dr. Ellie who gave me good news about my viral load test. He said the new test results, which we did in reaction to the bad results (350,000) were significantly lower. Down to 60,000. It's still too high, you understand but I was relieved. Then he checked me over and prescribed some new anti-virals, including yet another protease inhibitor, Crixivan, which is in limited supply right now and can only be ordered through one pharmacy.

So, I took my prescriptions to Bob's Pharmacy only to find out that my insurance had been canceled as of two weeks ago. And of course, in order to find out what was wrong, the agent had to call the broker who had to call the company which underwrites which had to call... You get the picture. I still don't have my meds, but I suppose they're working on it. Bob's great and he is like a dog with a bone when it comes to care.

Then I went home feeling a bit depressed only to find Jimmy all sprawled out on the bed doing his income taxes and having heart palpitations because of some new drug he's taking for his allergies. But, the ever faithful Jim Latham called and said if we wanted to do the vocal for When You Care, we could do it right then. So I flew to his house and we had a great time, and did a great vocal. He's really good at producing.

At home later that night, I was feeling sick from the new medication Dr. Ellie gave me in his office. I vomited a violent one that night. I was so miserable, I just went to bed.

...Only to wake up with incredible pains in my back. And it kept getting worse. So bad, I had Jim drive me to the ER where I was impersonally put in line behind the other patients. By this time the pain was excruciating and I was crying and screaming out.

Kidney stone. I thought the doctor would never get to me and when she finally did, she treated me like I was a petulant child (which I probably was by then). Finally they gave me some pain medication -- it was like she was walking in slow motion as she approached me with the pain shot. I've never been in such agony. They wheeled me in for x-rays in the coldest room on a metal table I've ever been in where I shook violently. Well, a few more tests later and I finally fell asleep. It was horrible.


But at least I didn't have to be hospitalized. So I'm home and warm and feeling better.


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© 1996 - 2001 by Steve Schalchlin