The Staples of Life

In the early 80’s, my life long best friend, Patrick and I moved from Houston, Texas to New York City.  We were star-struck by the nightlife and would take every opportunity to go out and experience whatever the city had to offer.  We would painstakingly craft our ‘outfits’ making sure that we lived up to the wacky 1980’s Art Scene standards.  At the time Richard Hambleton’s ‘Shadowmen’ were lurking on SOHO walls next to paintings by Keith Haring and Jean-Michel Basquiat. In music the New Romantics movement was thriving, and Soft Cell, Bow Wow Wow, and Adam and the Ants were going strong.

Patrick and I would be on a constant hunt for the craziest shoulder padded suit, glittering dress, or Harlequin unitard.  What ever treasure we found it was sure to be held together by just a few threads and in dire need of repair. In our haste to be seen in our newest outfits, we would use what ever tools were handy to make our purchases wearable by nightfall. We used to joke to each other that we were only held together by masking tape; and if we were ever found dead in the street, it would be a terrible embarrassment for our families, because the medical examiner would  have to pull apart the crumpled wad of masking tape, safety pins, and staples, to get to our bodies. 

At that time, everyday was an adventure, and every night was sure to hold something unforeseeable and interesting. We went to art gallery openings weekly (sure to get a free glass of wine), and danced at clubs like, Save the Robots, Area, Palladium, and Studio 54. What an electric time, it was all about dancing hard, doing poppers, spotting celebrities, and hopefully being spotted ourselves for our outstanding creativity.

It was easy to meet celebrities back then, or at least brush into them. Like the time I fell into Andy Warhol, digging my high heel deep into the top of his shoe while pinning him in the corner of the stairwell at Danceteria. I had no idea who I’d fallen into, until I was steadied at the top of the landing by my friend. “That! That was Andy Warhol!” “...Really?” I said, remembering Andy's, “Ouhfff!” and indiscernible muttering of curse words, when my elbows took the wind out of him. I looked back with my one good eye to spot him, but he had gone.

What? One good eye, you say? You see this all happened because I was wearing an eye patch, and incredibly sharp pointed shoes that had no heel tips. And when you include alcohol in this scenario, I was rendered a very unstable person, prone to falling into celebrities in stairwells.  Earlier that day I had lost one of my contact lens and couldn’t imagine myself being seen out in the world wearing eye glasses. My look would have been ruined. Luckily for me, I happened to have had a pirates costume eye patch laying around waiting for it’s day to see the light. I had my long hair braided up a coat-hanger wire, sticking straight up, on top of my head like a hair antenna.  I wore my (famous) silver and gold lamè black lace dress, well stapled at the waist, so as not to have any overhang off the square-dancers petticoat that I had layered underneath. I also had lots of dark eye makeup on the good eye (almost to compensate for the eye that would never be seen), huge gold clip-on earrings and black fishnet stockings stuffed into my literally, stiletto pumps. I really don’t know how I got around that night, I did make it home safely - more than I can say for Andy Warhol.

I started thinking about those days because I’m feeling like I’m still held together with masking tape and (especially) staples. It’s been 11 days since I had my surgery, and I had my drain out a week ago. I thought I’d have my staples out the same day, but my doctor thought they should stay in for another week, just to make sure the incision won’t come apart. I thought that was some bad news, but then my doctor laid the really bad news on me. He unfortunately didn’t get a clear margin during the operation, meaning there were cancer cells found by the pathologist at the outer edge of the excision. I’m scheduled for another round of surgery on Wednesday, June 29th. This will be the sixth time since December that I’ve been cut into and stapled back together.  The good news is - and I want as many fingers crossed as possible - that my doctor (the one that I so favorably mention in my previous blog) is conducting his own clinical trial, and has `asked me if I was interested in being a part of it. Since he’s the head of the trial, he thinks he can persuade the board of directors at Duke to accept me. Wouldn’t that be great!  I’m hoping to find out if it’s a possibility for me when I go in on Wednesday. I suppose I’ll have another two weeks of a stapled together leg, but things could be worse - I could have never given up my 1980’s style and still be sporting some asymmetrical feathered hair cut and a pinned, stapled, taped up, New Romantic outfit complete with a white lace headband. Thank God that things move forward!

I found a photo of me in the famous Silver, and Gold Lame`  Black Dress - though this was taken a little while after the Warhol incident. I had come back from Japan and cut off my hair into a 'Moe' asymmetrical bob. The Photo is by Tom Santini. (I had to re-photograph the slide as well as all the photos - my scanner got outdated)

The dress - you can see where it bunches - No more with staples! Here we are minus the petticoat and hair antenna. 1982

This is my Faye Dunaway moment. 1981 - Just wire this mop up and you're instant avant!

This was a test shot for Avon Magazine photographed by Steve Ladner. 1982

A photo by Patrick a while after we went to see Lydia Lunch at Houston's Rock 

Island. I wanted to be Lene Lovich

Patrick and I were making hundreds of xeroxes to plaster all over
 Houston to get ready for our NY move.

Patrick and I in a photo by Makoto Hirano

A photo of me in the Houston art gallery, Four Walls, before we moved to NY.
Notice the geometric antique dress and the braid on top of my head, minus the coat-hanger wire.
Patrick had an one-man art show here that was fantastic in 1981; and in part of a Valentines Day group show, I once had a clear plastic jacket I had made with red liquid food coloring piping topped off with a Encyclopedia see-through diagram heart necklace in-cased in a plastic bubble.

THE EYE PATCH MAKES ANOTHER APPEARANCE!

Back from Japan with the asymmetrical Moe/Monk cut.

It was no lie! I did have a white lace headband. In the Rembrandt ruff is, Patrick. Nola is in the parachute pants, skirt & ruffled shirt combo. Thank you, Nola!

A Deer in the Headlights.

Madonna's first ever show @ Danceteria. Skip the MC and see how truly horrible and repetitive she was.
Also funny is the fact they switch on and off the re-verb / delay to try to make the song more exciting.

Danceteria logo and famous people that frequented the place. 

Great East Village map from 1984. It's amazing how many places still exist.

Patrick and I went to a lot of these places like:

The Red Bar, Life Cafe (where Patrick read poetry) Limbo Lounge, and all the art galleries.

Slice and Dice

 I had been nervous about my Doctor’s appointment for days before we got the plane home from Barcelona - the appointment was supposed to determine the results of the whole Interleukin 2 treatment that I’d been through in April.  As far as I knew the Interleukin 2 had done some good.
I had a partial response with the IL2, it had shrunk my lung and clavicle tumors down to nothing, though it didn’t seem to be diminishing the tumor on my leg.  The night before my appointment I was surprised to find a voice mail on my phone from my oncologist urgently asking  me to phone him back before 10 PM.  I pounded the number pads on my phone hoping it wasn’t too late to catch him. He sounded relieved to hear me, and proceeded to tell me not to bother coming in for my appointment. He wanted to attend a seminar that day and he was re-setting his appointments. He asked if my tumor had gotten any bigger. I said, Yes, it had. He let out a great big, bottom heavy sigh, and said that if the tumor was bigger, there was no point in me going through another round of Interleukin 2. His diagnoses was being made over the phone mind you, and reported by an unqualified person, me! He began rattling off the other alternatives, and as he did, I came to the realization that these were not really options that were viable for me. Everything he was telling me, we had gone through before, and came to dismiss them in the last few months.
I’ve written previously in this blog that Yervoy is not an option for me because of the high cost, and the fact that it’s not covered by my insurance. The second option’s problem, is the fact that I’m not eligible for any clinical trials, because I have two types of cancer.  Clinical trials need people that can be easily categorized, so that the trial’s studies are 100% reliable. I have far too many variables going on to be included as a subject in any clinical trial. It seems my oncologist forgot this fact, or maybe he was just engaging in some very wishful thinking on my behalf, after all, the criteria of clinical trials are ever-changing. There was a lull in our conversation, then I asked him if it was possible for me to have the tumor on my leg removed, and have Interleukin 2 again to wipe out the spot on my coccyx bone. He said he’d talk to my surgeon, while also seeing about the other options. It didn’t look good to me, but I let him go to work, checking out all the avenues and did my best not to worry.

I’ve been calling every week or so to see if my insurance will cover the Yervoy (and, nope!) Also, my oncologist emailed me the day after our call, to say that the clinical trial he was thinking of wouldn’t accept me - Hmmm, as I suspected. He said in the email that he would set up an appointment for me to see my surgeon.

The days that followed were dark ones in my mind. It was hard to move past the idea that I was just being presented with really just one option - surgery.  In my mind, I was beginning to lose hope. Was my oncologist really saying that there wasn’t any future treatment available to me? It felt like it.

The days dragged on for Dan and me. The carpet of hope had been yanked from under us, the tension was rising.  I couldn’t wait to see my surgeon, who if I could have it my way, would be the doctor in charge of everything to do with my illness. He’s funny, comforting, and very talented with a scalpel. After 4 times under his knife, I can always expect minimum scarring. Not to mention that his team consists of my favorite nurse, who is a shoot from the hip, straight talking, don’t ask unless you really want to know kind of gal. The kind of person I need on my side.

Dan waited with me in the examination room. Always my ‘Rooster’, always my rock. The doctor arrived all smiles. After greetings, I lifted the edge of my gown to reveal my leg lump and said with a roll of my eyes, “It’s gotten bigger!”
 He said, “No it hasn’t!”
 Me, “Yes, it has!”
He, “No, it hasn’t. It’s only changed shape.”
Me, “No.”
He, “It’s protruding more, that’s all.”
Me, “How do you remember how big it was three months ago?”
He, “I remember.”

I quit arguing and happily accepted his opinion that it had only changed shape and hadn’t gotten bigger. I knew that by accepting his opinion my options would be better. I would be able to ask my oncologist to offer up the Interleukin 2 again for the one remaining spot on my coccyx bone. I was already formulating the email in my mind as we wrapped up the exam. It was going to be hard not to use all caps in attacking Doc Onc’s bedside manner, and his horrible habit of ending a conversation with something that tends to drain the hope out of a person. A sentence like: “We’ll be able to figure out a solution for you.” Or, “It’s nothing you have to worry about.”or, “You have plenty of time to sort out treatment options.” would be welcome at at time like this!

As it stands now, I’m doing the ‘Slice and Dice’ option.

The Slice: I go in for surgery on Tuesday the 14th to remove the tumor on my leg. It will be the 5th operation I’ve had since December 2010.

The Dice: (As in throw’um, and hope they come up lucky 7’s) We wait and see if the coccyx bone spot goes away on it’s own or shrinks from any lingering Interleukin 2 I may have floating around in my body. I’ve also got my fingers tightly crossed in hopes that I don’t develop any new tumors anytime soon.

I’m not very worried about the surgery tomorrow. It’s an out patient kind of deal - though I do have a bed reserved, just in case I need pain management; and even then it would just be an overnight stay. Once I heal up from the surgery, discussing having more Interleukin 2 will be very high on my list.

Lastly, on an everlasting note, my surgeon asked me if I would sign a consent form to let the hospital's research team have a slice of my tumor. I asked what for? He said that the hospital may try to grow my tumor’s cells in a petri dish to do an ongoing study on them. "Ha!" I thought, all the clinical trials would be begging for them!" “Sure-thing!”  I said, “Who knows, I could be the next Henrietta Lacks!”

Art

This is the Parc Central del Poblenou designed by Jean Nouvel. It was like being in a Dr. Seuss book!

I kept myself occupied on the plane ride to Barcelona by drawing this Mongoose from an English cigarette card.

 


I didn't bring a camera - instead I thought I'd draw what I saw. Sadly I didn't draw as much as I thought I would. This is a field of Rapeseed in France.

This is a watercolor I finished up right before we left for tour.

This is us playing at the Ryan's Bar in London. Photo courtesy of Kimberly Powenski / flickr.

Playing in the Parc Central del Poblenou



The new entry - When Cancer Rocks! - is below.

When Cancer Rocks!

Oh dear! Where to begin? So much has transpired since I last did an update. We went to my April 29th appointment and had to endure a two hour wait to find out that I am a partial responder. It’s a mix of great news and not so great news. It’s great that the spots on my lungs and collarbone have completely disappeared! The Interleukin 2 worked on those! The not so great part news is that the tumor on my inner thigh is growing and I have a new spot that has shown up on my Coccyx bone. What does a person do with a mix like that? Hang on to the good news in a white knuckle grip, and don’t let up in the slightest way. It’s  not easy.

I’ll find out later this week what’s in store for me in the near future. Most likely it’ll be another set of Interleukin 2. Though an alternative was mentioned in the last meeting with my oncologist. It’s a new drug called Yervoy, recently approved by the FDA. The thing about Yervoy is, it costs $120,000.00 for four doses and it isn’t covered by most insurance companies; certainly not Blue Cross, Blue Shield. What’s a Cancer-ite to do?

The best thing to do, in my opinion, is to completely forget about the whole thing and go on a 16 day rock and roll tour with the person I love the most! I wouldn’t call it vacation at all, for all you touring musicians out there, you know what I mean; but I got to play my most favorite music with my most favorite person, see places I’ve never been to before and meet new people who were incredibly nice; whom I’m sure that in the future I will become good friends with.

Day one of tour was a doozy! Dan and I took a plane (which they almost bumped us off of) to NY where we met Tony and Mat at our connecting flight to Barcelona, Spain. Once the plane touched down the four of us taxied to the car rental place where we picked up a Chrysler Voyager van. Our new home for the next 15 days. Thank god for Mat, being the only person out of us that could drive stick shift. He braved the crazy roundabouts buzzing with cars, bicyclists, pedestrians and wild motorcyclists; and gave Tony his first stick shift driving lesson in the parking lot of a rest stop in somewhere in France.

If you’d like to get an idea of what it was like driving in Europe, you can start viewing this footage from the 2 minute in mark: 



 Driving Footage:

We picked up rented amps and headed out for our first show in Lyon, France 6 hours away.

The show was at a place called Grrnd Zero, a kind of school type building taken over by an artist community. It was a great space, and had a great crowd. Three songs in, Dan’s amp gave up the ghost, and I gave my amp to Dan and became a member of the audience. It was a great show and the crowd went wild!  Two different stage dancers were involved in the wildness, ending with the remaining amp teetering, ready to plummet off of the chair, as the last dancer was manhandled off the stage.

After the show Dan and I went out for a walk. We wanted to see Lyon, even at 2:30 am when nothing was open, and it looking a bit dangerous. We were physically exhausted and I unfortunately started thinking a bit too much about my mortality, and ended up having an all night break down of crying hysterics. We shut ourselves in the room our Grrnd Zero host made up for the band, 4 beds on the floor made up with clean sheets and pillows; it was very sweet of them to take such care. I felt bad about Tony and Mat, they had no idea what the matter was and it must have freaked them out a great deal, being the first night of the tour and all. They must have thought “15 days of hysterics looming ahead?  YIKES!”  I was able to reign it in that morning as we scrambled to work the French computer keyboard so Tony could make ferry reservations to Dover, UK. Once on the ferry I begin to feel great, and appreciated all the new experiences. I must say that traveling and eating road food is quite a large leap from road food here in the states. It’s so much fresher, varied, and at one road stop they had fresh Cous Cous and roast ham with fresh vegetables. Truly amazing!

In London we stayed with Dan’s parents, and got to meet Dan’s new nephew Hugo for the first time. So cute!  We were able to take some time to walk through the South Bank and go to the Tate Modern, which was fantastic as usual.

With the White Cliffs of Dover behind us, it was a great blur of Belgium, Germany, France, and lastly Spain. Great music, great people, great sights! I’m really glad we did it!

It was a whirlwind of travel challenges, and I made it unscathed. 16 days of planes, long van rides, staying up late, sweating bullets on stage, and eating mainly gas station food. If I can make it through that I can make it through a few weeks of drug drips, injections, needle pricks, peeling dried up skin, and freezing shakes. It’ll be old hat!

Round Two

It was quite disappointing this time around, and I feel it’s almost not worth writing about. I had such a heavy dread about going back in for the second bout. I knew what to expect this time, and I didn’t want to go through it again. But we must do things for our own good, no matter how hard it is to face.
I took a lighter load to the hospital this time knowing I wouldn’t be up to much, aside from sleeping.  I could almost fit everything in to my ‘Trader Joe’s’ grocery bag luggage, but a second bag was still needed for my cottage cheese and flax seed oil. Dan and I showed up at the clinic and got the OK to be admitted for a 5 day stay in the hospital, even though my blood pressure was running a bit low.
 
We went through the proper routing this time by actually showing up at the admittance desk, as opposed to traipsing into the room and setting up camp like country folk. It was a good thing too, because they didn’t even have a room ready. We had to wait. Hmm, where’s the most logical place to wait in a hospital? Where you can get food of course! Around the corner from the admittance desk,  ‘closed!’  - was the main food court! ‘What, now!’ we thought. We saw at the end of another hall there was a Starbucks  doing booming business, brand new and with a line that equaled infinity; we decided to bypass the line, seeing that we could still get into the dining area of the cafeteria. We sat down at a table, resigned to a long wait.

We were summoned an hour and a half later back to the admissions desk, where an escort was called to take us to my room. You could tell that the man, tall, lanky and 60, racing towards us was the escort, mainly by the ugly extra wide wheelchair he pushed in front of him.  Once I was saddled in like an invalid, he expertly wheeled me and my two bags to my room with Dan in tow.  I think Lanky’s top speed got up to 30 mph -  my hair flowing back behind me. He didn’t bang into one thing as we sped through the halls, and when it came to the elevators, it was if I was a puck floating on the cool breeze of an air hockey table; I didn’t feel one bump!

In the room things happened fast, Dan had put away my bags, and I was immediately told to get ready for my PICC Line. The horror! It never hurt - just the idea of the long thing wobbling around in one of my main arteries is hard to take. (Sorry to have brought it up.)

At 6:00 PM I got the first dose of the second round, and typically I got the rigors two hours later.  It felt like no amount of toasted blankets, hot packs or morphine would slow down the shaking.  Eventually I sank into an upped dosage of morphine, and into a deep sleep.  At 2 AM vital signs were taken and it was determined that my blood pressure was too low to be given the second dose.  I took my second dose at 10 AM the next morning, and turned on my heating pad in anticipation of the upcoming rigors. It went like this for the next two doses: Skip a dose, take a dose, skip a dose, take a dose.

The next three days were a blur of nurse’s faces, vital sign checks, and Dan’s comforting visits. The one thing I do remember vividly, is the time they decided to try to raise my blood pressure by putting me on a combination of blood pressure medication and dopamine. My reaction was immediate;the blood raced through my body, the flood gates were opened, all my veins pulsated and shook as my heart rate skyrocketed. The two nurses worked quickly to adjust the medications. They became buzzing apparitions as I became dizzy and overheated. I remember hands coming towards me placing ice packs on my forehead and neck. I don’t know the actual length of time it took to regulate my body into a normal state, but I was scared they wouldn’t be able to do it in time. After that episode it was clear I wouldn’t be taking any more IL-2 doses. It was a huge disappointment even in my glazed over state.


I was sent home a day early. It took time to ween me off the drugs, otherwise I would have been sent home even earlier.  The oncologist on duty gave the instructions on what drugs I was to take at home and when to take them. I was oblivious as usual on the day of release, and Dan was the one to take note of all the information. I just signed on the blanks that were put in front of my face.

We had a different escort going down to the lobby that ended in me being pressed up against a window “So you see the taxi.”  It felt incredibly uncomfortable, as I had been stuck in a slot along two other women who were also pressed to the glass. Dan spotted it - the taxi was already out there. Thank God!

I was pretty weak and out of it, but I remember being shocked at the Jamaican taxi drivers aggressive and reckless driving moves. Already in action he asked Dan where we were going, then continued talking openly and obliviously on his bluetooth. I thought his driving skill’s must have been developed in Kingston, or possibly New York City, because he narrowly avoided at least three near accidents - (that he also, almost caused.) I was a bit scared, so I blanked out the ride by thinking back to Lanky’s wheelchair drive to the 9th floor -  I felt a bit safer. Dan’s plan was to have the taxi driver wait with me in the car while he went in to have the 6 prescriptions filled at the pharmacy. Dan was in and out of the store within a matter of seconds - empty handed! Dilemma! - the pharmacy was closed for lunch and would be open again in thirty minutes. We let the taxi go and Dan sat me down on a bench outside the store's door with my bags at my feet. We waited, and it was nice to be outside. When it was time, Dan went back inside to get the drugs leaving me propped up next to the gumball machines. He didn't take long.


I'm surprised at how much more energy I have being home this time as opposed to last time. I sit up in bed and check my email and am able to write a few too. My side effects are pretty drastic this time. I have been turned into the cartoon figure ‘Droopy Dog’, my face has sagged and wrinkled. I also think  I look a bit like Benico Del Toro in his most haggard stage! My palms have been peeling, I have leper like rashes on my ankles and elbows, I've gained about 14 pounds in water and my right leg has swelled up like the Zeppelin. For the most part these side effects are diminishing and I’m practically back to my normal self, though my skin is so dry and peeling I’m reminded of Peanut’s 'Pig Pen’, with a little cloud of dead skin hovering around me! My new routine is to drink tons and tons of water, and slather myself in Manuka Honey moisturizer. On the 29th of this month I’ll have another PET scan, and then on May 2nd I’ll see my oncologist to determine if the drug is shrinking my tumors or not. I feel really good, and I believe the IL-2 is working. I see a difference in the way the tumor on my leg looks - there’s no way it can’t be working!

As Dolly Sings It - 'Here We Go Again'!

I’ve got two days before the process starts all over again. I can’t lie and say that I haven’t been dreading it. I have, on a very base level. I’m glad I had two weeks to recover - I needed every second of it. There were many things to be done - mundane things. Such as a months worth of laundry, doing grocery shopping; and getting the car jump started on three different occasions, that culminated in a new battery from Sears that wasn’t needed, and $400.00 later a new starter from the mechanic we originally bought the car from. The latter seemed to do the trick, and Dan and I are able to run the rest of our many errands.

Highlights of this weekend are: it’s currently beautiful outside, I’ll be attending a baby shower thrown for some dear friends of mine, I’ll look better in about a half hour (I’m dyeing my hair, so I look my best as a blown up cube-head) and Dan and I plan on seeing a light hearted film tomorrow before I pack my bags.

If I can ask again for you all to think of me through out the week, starting on Monday the 4th, I would be so thankful!  You all helped me so much to achieve 12 out of the 14 doses during the first round of treatment and I’d like to be able to get through just as many this time round.

I thank you deeply for your support!

Rooster My Rooster!

By Saturday the 19th I had absorbed 12 doses out of the 14 intended. I’m glad they stopped. I had been told that the only person in the last few years that had taken 13 doses, had to stay an extra two weeks because of brain toxicity. Dan and I were also told that no one had made it to the 14th dose.

There had been talk of them releasing me that Saturday morning, so I was excited even in my delirium. Dan was holding my hand when one of Duke's leading doctors walked in. I had met him before briefly during an appointment in the previous month. I recognized him right away - like he was a celebrity! - somehow I knew he was the one to OK the release. I could hear him talk -  like an adult on a Charlie Brown cartoon, he sounded like a muted trumpet. I tried to keep up, “Hello, Dr. Kelly Marcom! How are you Dr. Kelly Marcom?”  “Oh, Yes, Dr. Kelly Marcom. I’m ready to go home, Dr. Kelly Marcom!”  “Goodbye, Dr. Kelly Marcom” “Thank you Dr. Kelly Marcom!”

I don’t remember the cab ride home, but I do remember leaning on Dan to get into the house. My hands on his back, shuffling behind him like the sick caboose of a small train. I was tipped into bed, tucked in and waited on hand and foot for every need I had. Dan would get up in the middle of the night to make sure I had my 12AM and my 6AM medications. Anytime I needed to get out of bed, he would be there to help me. We would do the shuffle train so I wouldn’t fall over, and I would thank god for him every-time. If any of you know the Charles Portis book True Grit or have seen the new Coen brothers movie; there is a scene that is my favorite:  It’s the one where Rooster Cogburn is riding through the night with Mattie Ross, delirious, across his lap in the saddle. The horse is whipped into running harder and harder, the night sky is spinning around in Mattie’s eyes, spurs are digging in to keep the horse going, the sound of labored breath and the galloping hooves are the only thing audible until Rooster brings Mattie to the safety of a cabin where she is saved from her snake bite. It is a beautiful, surreal scene that's emotionally hard to watch. The determination that Rooster has to not let Mattie perish makes me cry every time I think of it.

Dan is my ‘Rooster Cogburn’ , though I can attest that no animal has been, nor ever will be harmed in the saving of myself.