Monday, December 26, 2011

Gratitude Eternal

I am grateful. 

I am grateful for the life I have had, and the people that helped me to be the person that I now am. 

I've been thinking about what's happend with me this last year, and I have to say I'm grateful for so many things as a direct effect of having cancer. I am grateful for my life, and grateful to be able to share my life with the people I dearly love. I'm lucky, so lucky, because I'm one of the few who have been shown in vivid light what is important in life and how to stay focused and take care to nurture those important things. It's been shown to me how important I am to all the people in my life. As well as how important I've been to people in my past, and how I can do something for the people around me in the future.

My life has ment something, I am sure of it.

This time of year one can't help thinking of the Dickensian stories told over and over again,  A Christmas Carol, It's a Wonderful Life, and the many more that follow that format, asking the question people ask them selves from time to time 'What would the world be like without me? Who's lives would have been different had I not been there in some fashion to change the situation - the equation?'

I don't know how often I've been involved in a ripple effect - but I'm sure there have been countless times that I've made a difference in someone's life on account of something I said or did - at least on some small scale; and I know this is true for everyone out there in the world.

It is especially true for the people who have reached out to myself and Dan this last year. Our lives have had an immediate effect for our betterment. I thank you. I am grateful to you.

If I didn't have my loving husband to help me stay strong and hold my hand and tell me everything would be alright, I wouldn't be able to tell you what state of decline I would be in by now.  I live for  Dan, and our parakeet Glen.

If I didn't have the army of friends in the music community who have given me moral support, and told me I was strong, and showed me that they cared;  I don't know how I could keep struggling to go on. I'm sure I would be at a much lower point that I am. I live for you my friends, you keep me going.

I've been thinking of the world in a different way lately, because there have been so many great things happening in regards to people reaching out to help me.  People have rallyed for a cause, a cause that is me. I am so grateful and also overwhelmed. It's come into focus for me that our music community is like a vast fabric, or membrane, knit together that heals it's self when wounded. Our people take care of each other when one is in need. I'm so lucky and proud to be a part of that community! I have such gratitude, and I am so thankful.

I've also been thinking of my 1/64 indian background, which is Osage indian.

I've read that the Osage indians attribute their origins to the separation of the earth, sky and water.

They believe that humans and other living species inhabit a narrow stratum between earth and sky called Hó-e-ga. This plane of existence consist of two interconnected realms:

a visible world in which things take physical form, and an invisible world of creative powers and spiritual forces.

I believe there is a third realm interconnected in this stratum, and that is the realm of the music community with it's world wide creative powers and spiritual forces. It is a collective of positivity that has true healing power and is able to keep the ill strong.

I am lucky to be in that caring realm.

I am grateful to all who have put in the time and effort to put on concerts world wide in my name to benefit me. I can not thank you enough, except in doing my best to stay strong and stay alive.

Thank you,

Love to you all, my caring army!

Wednesday, December 21, 2011

A Dickens' Ghost Visits

Over the last few weeks I feel I’ve had a glimpse from Dickens’ ghost of  ‘Yet to Come’.

I mean this by the way that I have been existing for the last few months with the feeling of what it must be like to over 90 years old. It’s as if I’ve been hovering round, doing the out-of  body experience, you know, having a look-see, at what might be my future self. What I was; was a drained, wobbling, withering shell of life that had seen better days. Was this what I could expect if I’m allowed to live to be 90?

I took a hard look at all the other  90 year olds in the hospitals waiting rooms, they were running circles around me. They were full of life, and I’m looking at them thinking, why is it so easy for them to get out of a chair? Granted, they’re breathing through a oxygen tube but they do seem so spry. Why don’t they need a wall to lean against? 

See, after my pituitary surgery, my decline happened so gradually, didn’t even realize I lost my strength weeks and weeks ago. It crept up on me in such small little ways.

My waiting room read, a collection of D.H. Lawrence short stories and poems, began to get to hard to hold, I had to give it up (I suppose I’m just tired, I’d say.) I thought I’d gained weight and hadn’t noticed, (humm, I look the same) because it was hard to get up out of chairs, or to reposition myself in bed. I was beginning to see that this was all heading to a crisis situation. I took the car in to the mechanic, because it wouldn’t turnover properly. The guy turned it over, like seven times in a row. No problem. I told him to watch me try, because I had a problem every time. We concluded that I didn’t have the strength to turn the key far enough over in the ignition  to make the contact. I was so upset. (This was the day before my November breast surgery- it was also my 10th operation this year)

When I’d had my follow-up with my neurologist, on November 7th, Dan and I  told him of our concerns. My slightly slurred speech, the weakness in my arms, and my generally tired, stiff body. He didn’t seem to have anything to say about it other than suggesting that I go and see an endocrinologist.  They ‘kindly’ made an appointment for me on December 19th. That meant waiting practically 6 weeks!

 Around that time I had to have Dan help me get in and out of my shirts because I just couldn’t get my arms raised enough to pull the thing over my head. I could drive a car - but I had to be pulled up-out of the car every time. And the few times I was out driving  myself I had to drag myself out almost on the ground then pull myself up over the car door  - just to stand up.

What were they thinking? After my surgery, I just would have thought it would have been a no-brainer for the brain surgeon to know I would need an appointment with an endocrinologist just as soon as I could after surgery - and not to have to wait 44 days.  I was on the phone every morning trying to get the appointment moved up. Those were great days! Not!

One amazing hi-light in my new old age was that my friend Stacy ( my wonderful, great friend Stacy) gave me the gift of having watercolor lessons. I had wanted the lessons for about 6 months, but, I just couldn’t do it financially. I’m so grateful for those lessons. I have to say I was at my worst point physically, but there was nothing going to stop me from having those lessons. It was a week long course and I could hardly stand but I did it. And, this is bragging, but I was best in class. I would do the same picture over and over until I was happy with it. I really learned so much, it was really special. I’m going to keep it up -  keep painting. I made a breakthrough and I know I can be happy enough to feel that I’ve made a painting that is successful. It’ll help me not to concentrate on my achey self.

Once my classes were over I went back to the busy task of getting my appointment, in horror of ending up in a hospital bed sooner than later.
After crying into the phone, practically in hysterics, I finally got my appointment moved. The lab report said that I had zero adrenaline, zero cortisone. I was put on Hydrocortisone immediately and immediately felt better. I could take off my own shirt like a grown-up. I have to take thyroid pills as well, and it might mean I’ll have to take these replacement hormones for the duration of my life. I’m keeping my fingers crossed for my ol’ pit gland to kick in and start producing for me again. I have new PET scan coming Feb 7th. And I feel that I’ll be returning to see my endocrinologist a lot sooner than planed. I know my pit’s shortchanging me in the hormone department, something has to be done about it.

PS:  A funny photo of me. This is how I looked while doing my christmas shopping. I had my Roy Orbison disguise on. I had just come back from having my retinal tear looked at, so I had to wear the dopey/cool? sunglasses under my glasses - then have the hat on to cut down on my floaters! A good look for me? I scared people and even had the mall security follow me around a bit. I also had a funny gait to my walk from being so stiff. I must have looked like a lurker about to slide some loot in my jacket!

I also want to thank Brad and Barry for their spectacular Holiday Spectacle. I so wish I could have been there to enjoy the fun. Thanks for your thoughtfulness!


Thursday, November 24, 2011

The Day Before Black Friday

Looking back on this last year, I have so many things to be thankful for. I'm thankful for my husband Dan, who has watched a shadow cross over me, and told me I looked beautiful when I know I looked like more like death than death itself.  I'm thankful for my husband who held my hand in the worst of times, standing firm in knowing things would get better, letting me know he would be there for me anytime I needed him. His strength has pulled me through the hard times and makes me realize how lucky I am to have our little family of three, counting Glen our super fabulous parakeet. I know our little threesome family is special and I am very lucky to be alive to be a part of it. They have kept me alive. Most days we watch our Glen going about his beautiful birdness, preening, bending backwards in a way you wouldn't think possible, peeping up and saying his nickname over and over to impress us. He does. I am thankful for my family. I am thankful for Dan's mother who has kept him going and has been his strength in the beginning of this mess.

I am thankful for having such a great and caring Surgeon that has carved and carved away at my cancer making it shrink in fear of his scalpel. I'm thankful for his nurse who is a giving caring person. They have kept me alive.

I am thankful for you, my friends, Tom Lax, Brian Turner, Graham Lambkin, Scott Soriano, Chris Toenes, Travis Cobruh Jackson, Ruben Mendez, Scott Winland, Melissa Lunden, Shawn Slome (and so many others - sorry I'm a bit foggy) for everything they've done.

I am so thankful for the hundreds of friends, and for the people I have just come to know as friends. You all have helped me in so many ways. You have kept my spirit up when I was afraid. You let me know that I had people around me who cared about me. You kept me strong. I can't thank you enough. You have kept me alive.

I want to give thanks to the people that keep finding ways to help. Just know that it all mattered and I love you all very much!

I wasn't going to post an update because I've been very weak due to my pituitary not dealing out the right hormones that I need. I don't go in to see the Endocrinologist until December 14th.
I'll put an update then.

Dan just ran in to tell me that he realized we have a real Thanksgiving going on in our house. He's an Englishman, I'm an Indian, and we have a bird, who is not a turkey, and will not be eaten. And we are all truly thankful!

'I'm alive and well and living here on Living Island living every happy day
Alive and well on Living Island, living here in harmony and hope someday
 I hope someday the whole world will live this way!'

Still my theme song!

Living Island is the most amazing place!

Sunday, November 6, 2011

Despicable Me, Looking Back At My Year as Cavity Sam

I must apologize to the readers of this blog (long suffering folks that they are) but I've been having a bit of a hard time, and haven't been able to see the computer screen well enough to write until now. Thank you for your patience.

I thought I'd start you out with a laugh. My pituitary surgery was only an overnight stay at the hospital—everyone who's had surgery knows you get woken up every 2 hours for vital signs—during one of those times I took some drugged-out photos of myself with my phone when I couldn't get back to sleep. The photos are a bit dramatic but I have to show you how much I looked like the cartoon man, Gru, in 'Despicable Me'!

 You have to admit the likeness is astounding! Don't be scared, it's only the camera angle and my drugged up state that makes me look so horrid.

In an equally drugged state, I took 'Finger ET's' photo. He was my friend for the night, and stayed with me through all my vitals.

It was an easy overnighter, in the terms of my Otolaryngologist (head and neck surgeon) and my Neurologist, the surgery was a success. However, in my own terms, my surgery's success is questionable, and my recovery since September 28th has been a challenge.

As you may remember, I was having incredibly bad headaches from the end of August, until about mid October, which have been attributed to the swelling of my pituitary stem (a side-effect of Yervoy,) as well as a tumor growing inside my pituitary gland. The good news is the tumor was benign. My Yervoy treatment was stopped, the tumor was removed and my headaches have tapered off.  Although I'm thrilled to have had the tumorous peanut plucked, I have been left with a torn retina and tasteless taste buds.  This has infringed largely on my life. Both of the doctors that performed the surgery stand firm in their belief that the torn retina is not in any way related to the surgery, but is a natural occurrence that has happened in accordance with my age. The dissipated everyday tasting abilities of my tongue is a natural part of healing and may or may not come back months from now. As of now I can taste certain foods well, other foods less well and some foods might as well be cardboard. My vision problems on the other hand, to me, are not so coincidental, and seem completely related to the doc’s knocking about inside my nasal cavity. Up and over my optic nerve, and definitely related to sawing a hole through my skull to retract the problem nugget with a tiny metal clamp. To me, it seems very likely that that was the cause of my retinal tear and also the subsequent bane of my life! Horrible floaters which dip in and out—up and down, forever swirling about in, and out of focus, these things infringe on my life on a very different level.  

I noticed them first while signing the hospital’s discharge papers. I was handed a pen, and I literally  swatted at the air and said, “What’s that!?” Then I noticed the rest of the black shapes floating around in front of me. There was a quite large uni-brow—shelf or visor type shadow hovering above my head. These dark shadows are actually blod drops. The retinal tear was fixed by laser surgery three weeks later, but the gigantic dark floaters were left behind. I feel like I'm about to be hit in the head at all times by sharp corners; or that there's a bug on the wall, in my food, in my bed, or climbing up me—It's a dim and horrible personal fireworks show. For those of you who have a hard time picturing this - I have found on the internet a likeness done by somebody with photoshop, as seen below:

These dark spots are constantly swirling around. 

This in conjunction with the cardboard food I've been eating has just pushed me over the brink. And please know, that this has been hard for Dan, who has toiled in the kitchen for hours on end, cooking up the most amazing dishes, trying to get the right food combinations so that I'll be able to taste.  Dan's cooking is outstanding at all times! Before my surgery, I'd push anyone out of my way to get at the table (this includes Glen).  It's no fun cooking for a tasteless sap, you might as well serve up a bowl of dog chow. I wouldn't know much difference. I'm sorry, Rooster!

I have taken up wearing a Dolby/DJ Friendly truckers cap. (David, you know the one.) This, in someway helps the floaters from distracting me too much. It's just right for the field of vision my floaters roam in, and the right color for them to fade into. I'm lucky I got that hat!

Nose normal looking - eyes with floater protection 

On Monday, I have my 'Tell All' PET scan, and I'm really scared to find out what's inside me. I have to ask all of you to please think of me on Monday and send me Lucky Vibes! The scan will tell me if the Yervoy, (and the Interleukin-2) is working, even though I never got through to the last doses of both drugs. If anything new shows up in my scan other that what I already know about—the atypical cells in my breast, and the mass in my sacrum—I'll have to have the surgery done quickly.

My insurance switches over to the state's 'Inclusive' health plan, which is insurance for the un-insurable. I'll have a new higher deductible ($5000) starting December 1st, and it has been suggested to me by an insurance broker to have whatever needs to be done—as soon as possible, before that date. I'm terrified!

Dan is going to try and organize some art sales and do some benefits to try and help out.

I know for a fact that I have breast surgery coming, which means it'll have to be done this month!

I'm coming up on the one year anniversary of my diagnoses. It's unbelievable that it was only November last year that I was told I had cancer. I didn't know I'd be living the life of Cavity Sam! (the man depicted on the operation game board)

I can't quite believe that all the surgery and treatments I've had were all done in one year. I'm just terrified that I'll find out I have more coming. 

Please think of me on Monday, I will be so thankful! I'm so tired of living the life of Cavity Sam.


Saturday, September 24, 2011

Plight of the Pituitary

The Great Melvin Burkhardt photographed by Joel-Peter Witkin

OK! OK! It's a Pituitary Tumor!

It's getting extracted on Tuesday the 27th! It's upsetting, but it's not the worst thing in the world.  Ninety five percent of the time they are not cancerous and, in my case the Yervoy most likely shook it alive with a little swelling. Which, I have to say in my book is a good thing! What if I never found the stupid peanut? I must say that I'm more than annoyed with the thought of more surgery! This is the first time during this whole cancer thing that I have felt crappy all the time. At least solidly crappy since the beginning of this September.  

The first day I had liquid steroids, instead of Yervoy, I felt like a champ! And the day after...  I was just a streak, almost invisible, running around the house like a Blue Ass Fly. I was out riding a bike, doing projects right and left, cleaning the house. I was unstoppable - till 5:00AM the following morning, when the headache came back. That's it's MO, to strike while I'm sleeping. To shake my brain- with its sharp spiny tendrils, groping around for a spot where it might hurt the most. Arrrgh! I wake up, then get up to take a steroid and an antacid with a bit of food. Then I go back to sleep (it takes a while) and wake up feeling better, usually. The steroid can carry me all the way through the evenings most times - but lately, not.

Great for a brain massage. In my imagination this hand is much thinner and a lot it more spiny!

My oncologist, after discussions with the neurology team, deemed that it was in my body's best interest to continue the Yervoy, and my head-box was going to just have to put up with a few technicalities. I've come this far with the Yervoy and I went in for my third infusion yesterday. I didn't know that the treatment would ratchet up the headaches again. I thought the steroids would keep it all under control.

After a phone consult with my oncologist this morning, on his advice I upped the dose on the steroids. It helped - a lot. But somehow today I just feel a bit gloomy. I'm finding it hard to pick up the paint brush, or work on a really great piece of Tretetam soundscape. I'm not really too worried - I have faith that things are working out, and I just want to get on with feeling like something isn't finger flicking my poor ol' Pituitary Gland like a mini punching bag. The poor dangler!

I also just want to say how important it is for me to have Dan continue on with our NY plans. Thank god I have this surgery early in the week, which will allow Dan to be with me, and to take care of me - (MY ROOSTER!!!!!!) for  a few recovery days. But you see, I don't want to feel that this thing has control of us! God Damn it, I'm fighting it. And that means not letting it take hold of the things that are important to us. We didn't cancel our May tour - and thank god we didn't! That was very special to me. And though I'm not going to NY this time, I will in the future. For right now, Dan will have to be the one standing up to this stuff. We won't let it get us down! I'm calling it, "Business as Usual!!!"

Tomorrow, headache or not, I'm pushing myself to pick up a paint brush, or  I'll make my weekly two loaves of whole wheat bread. That's with no sugar, packed with flax seeds, buckwheat, oatmeal, and sunflower seeds. It's great, and I make it on Sundays! No exceptions!

One more thing - I just want to let people know that I do have another surgery coming up - just so it doesn't look like things keep coming at me. It'll be another breast excision to remove some atypical cells (not cancerous) from the scar tissue of my right breast. It's also not a big deal - it'll be done in Mid-October.

So right now I'm looking at some cancer-free holiday time, and boy am I thankful!


Monday, September 19, 2011

Pituitary Purgatory

Sometimes you just have to whine, complain, and feel sorry for yourself. Today I'm doing just that!

I went to have a talk with a neurosurgeon in Raleigh this morning. I was so lucky to have them let me drop by, and fit me in to their busy schedule.  Dan and I were ready to wait the whole day - but it was only about 20 minutes before my name was called. The neurosurgeon and his assistant greeted me and Dan, then ushered us into a small conference room. They were both very nice and explained how my Pituitary Gland was abnormal, swollen, and could if it kept swelling cause blindness, among many other problems in the hormonal department. Then there is the scary, tiny fraction of a chance that it could be a tumor. (I'm convinced that it's just a reaction to the Yervoy.)   It's not a bleeding tumor, but I now have to have another MRI. This one concentrating on a small area just behind my eyes, and sinuses; dangling from my brain -  the Pituitary Gland; which will be imaged section by section in slice like fragments to see what the hell is going on with it.

This new MRI and swollen PT is creating problems already. It's preventing me from continuing my Yervoy treatment and now there is a small chance that the insurance won't cover the cost of the MRI. Why, you ask? Because I just had an MRI last week. It's too soon to have an other one billed to the insurance company, so the hospital says. I had a conversation with the imaging person, and she said she'd work on it with the insurance company first thing in the morning.

I'm sure that come 9am tomorrow morning, it will all be straightened out, and Dan and I will drive to Raleigh to be there at 12:00 as scheduled. The neurosurgeon said that if I have the MRI at 12:00,  I would be able to get the results by tomorrow evening or by Wednesday morning.

I may have to halt the Yervoy treatment altogether depending on how all the doctors involved with my case feel about the results of the imaging. I suppose the Yervoy could do irreversible damage to my pituitary gland on one hand - but not doing the Yervoy treatment could do irreversible damage on the other hand. Why can't things just be stabilized, level out and be somewhat normal!? I'm getting tired of this wild ride. I'm really ready for some easy cruising.

Purgatory by Hieronymus Bosch

Tuesday, September 13, 2011

Ten Day Headache! *#!**@#!!!#!!!!

Today I was supposed to get my third infusion of Yervoy, but instead I got a IV full of steroids. I've been having bad headaches for the last ten days. Not your usual alcohol residual, or 'haven't eaten anything' type of headache. It was very different. It was a steady climb from a low grade - "I can ignore it" type - to a consistent, persistent phantom trying to break my skull open to feast type. Then you sprinkle in a bit of 'Stabby McStabbington' behind the eye sockets every few minutes, while thinking of ice picks, and you have an idea of what it was like. It never ended! I couldn't move my eyes around. It hurt. It hurt to lay my head on my pillow. Laughing, coughing, and sneezing hurt. One of the most unusual things about it was I could feel my heels in the center of my head while walking, every step was like a fingernail flick to my brain. OUCH!!!!

Evan, my oncologist's P.A., said it was a sinus infection. She had me on Mucinex, Sudefed, Excedrin Migraine, and regular ibuprofen - all at different times - nothing worked for days. So I was sent to have a MRI on Monday, and this Tuesday morning I was told I have a swollen Pituitary Gland stem.

This image and the description below was pulled from 

The pituitary gland, produces the hormones the body's needs. These hormones are then circulated in the blood to the body's tissues, including other endocrines.

Evidently it's not that serious, the steroids should take the swelling down and I'll be able to continue with my treatment, hopefully by next week. I'm slotted in for the 22nd of September. The picture above  makes the Pituitary Gland look like it's part of my brain - but it's not really, and I couldn't be happier.

So as of now, I feel so much better. I don't feel the pressure against my optic nerve as much. The headache is leveling. 'Stabby' is making less frequent appearances - thank god, and I should be back up to my norm by sometime tomorrow.

I think I'll be able to sleep tonight!

PS: I don't know how I did it - but I played guitar with Dan at the Hopscotch Festival in Raleigh NC. We sounded great thanks to Tony (Keys) and David (Drums) who came down to play from NY and DC. I have to tell you the best part of the whole night was that I had the best 'seat' in the house to see and hear Dan do his blazing guitar solos! He's amazing! I want to thank Tony, and David for coming to play with us. Sorry I won't be in NY!
Hopscotch Festival 2011

Love to all!

Sunday, September 4, 2011

Getting Through Plan B

I saw my oncologist’s PA, Evan, on August 2nd, right after my latest PET scan. She said the news was good, that I was clear of cancer in my soft tissues. Thank God!  But she reminded me that I did have cancer growing in my Sacrum bone, when I’d been under the impression that it was in my coccyx bone. I always imagined my coccyx bone being lopped off by Dr. Pruitt if it got too out of hand. You can’t lop off a Sacrum! Evan, said I had two options, 1. Wait and see if I would develop anymore tumors in the future, or 2. Be pro-active and use the drug Yervoy.

Arghhh! Yervoy again! What’s the matter with you people! It cost too much for me to even think about - Don’t you people remember!  My insurance won’t cover it! 

  That afternoon I was on the phone with my insurance company - it took the whole day! I have the “on hold” muzak ingrained in my brain; the same piece of modern elevator synthesizer, over and over and over! Please make it stop!

The insurance company had already told me that the only thing I could do was to make an appeal.  I was told to call the people in the financial department at Duke. It was late in the day and I had to leave a message. I was sure that I was destined to wait around until I had some other cancerous growth, (maybe one with teeth and a hairline) before I would get anymore help. I had a fitful night of sleep, anxious to resume my phone call where I had left off  at 8AM the next morning.

The next day, before I had my coffee, I was being told that I needed to speak to someone else in a different financial department at Duke. I had just jotted the number down when a call came in on the other line. I wrapped it up with the first call and took the other. I couldn’t believe it, it was the woman who’s number I had just written on a scrap of paper, and she was telling me that my appeal had been accepted for the Yervoy.  Turns out, she had gotten my message from the day before, and had also had been talking with Evan, and my insurance company. I got it!  The $30,000.00 per dose drug. The $120,000.00 for the 4 needed doses, drug! The drug. The drug “I always wanted!”

 From the phone call that took place on Friday, I was instructed to go to Duke Monday, to sign papers letting Duke off the hook should anything go wrong with the insurance deal. On Tuesday morning I was at the hospital with a green light for treatment. One, two, three. It was absolutely shocking!

I was so nervous; it was happening so fast. Since March 2011 I had been told I couldn’t have Yervoy.  Now like magic, practically overnight, I was getting the drug with an extortionist price tag, that has been reported to extend the life of people with stage IV melanoma. The thought of it made me go weak in the knees. They say, “Be careful of what you wish for! You just might get it!”

I checked in, and before I knew it my was name called. What! This was unheard of! It always takes an hour and a half, at least, before I get shown to a room! Walking down the hall we passed not only Evan, but my oncologist as well! Both smiled and said, “Hello!” as they passed. What kind of alternate universe were we in?  
Evan entered the exam room, almost immediately, we all settled, went over a few preliminary questions and had a discussion about the drugs I was about to receive.  Within 10 minutes Evan was ready to send me on to the “Treatment Room”. This wasn't the norm, because:

#1: Nothing ever happens ahead of schedule. (We were at least two hours ahead!)
# 2: What the hell is this treatment room?

I don’t know how I got it so wrong about what was really happening. I had imagined a private exam room where I’d be getting a shot; kind of a in-and-out sort of thing. I had no idea what I was about to encounter.

Dan and I reported to the desk in a large waiting room. They had cookies and coffee out for the 15 or so people sprawled about the room - which made me think that everyone was in for a long haul. I was told that there were soft drinks and ice in the treatment room, so I went in to get a coke. It was like scene from 'Blade Runner/Brasil' - retro-futuristic. Ancient pink floral patterns on the walls with shiny chrome cubes and nozzles with clear  tubing hanging out of walls connecting into  machines, There must have been 50 pink recliners, full of cancer patients in different stages of the disease; all hooked up to individual IV’s  pumping out some chemo-cocktail. Off to the side were semiprivate rooms with actual beds. Those people looked a bit worse for wear than the reclining fellows. My heart was racing - God! I’m one of those people!

 I suppose in all the time that I’ve been well enough to get around on my own, I haven’t been thinking of myself in terms of being someone with cancer. It’s all been so abstract! From the beginning I’ve been told to show up for this or that procedure - so I’d do what I was told. I may have been drugged and really out of it at times; and at times have had gone through terrible side effects and mental stress -  but I never really put it together that I have cancer in this way! Standing among the others I realized that “I” have to have chemotherapy (really immunotherapy) - that “I” have to be laying around in a recliner with someone two feet away in an other recliner who isn’t coherent - That “I’m” in a huge sea of people with cancer - some possibly close to dying! 

This woman next to us, evidently a family member of the incoherent man, had her mouth full of pizza as she made eyes at us. She was chewing and trying to have a casual conversation with us about our first time being there, all while my nurse kept missing my vein, making my arm into a bloody dripping mess. The head nurse had to be called in to take over the job. Dan and I weren’t feeling communicative to our neighbors - understandably. If I tried I couldn’t possibly have made-up a more horrifying story of what it was like in that room. Inside my mind, I felt like a woman in a huge crowd, down on her knees, hands reaching out franticly, grubbing and pleading for it all to go away. Imagine: Picasso’s ‘Guernica’. I needed something to calm me down - I asked the nurse for an Ativan. I thanked god I had Dan there by my side keeping my connection to him and to myself through the thick layer of surrealism.
I'm the one on the right!

The treatment only took an hour and a half, but the time had warped into something much longer, wavy and unfocused. I kept having realizations about the future; one being that I wouldn’t be able to come to NYC like I and Dan had planned. I was going to be playing guitar with him, for his ‘Catbirds and Cardinals’, Northern Spy record release show on October 1st at a club called Shea Stadium in Brooklyn, and a show on October 2nd at the Cake Shop. I had also been so kindly asked to play my experimental music, Tretetam, on Brian Turner’s renowned WFMU show on September 31st. What a great honor, and what a terrible disappointment that I had to cancel. I’ll have to postpone it for a later date! I was also looking forward to seeing all my friends that I miss so much. My doctors have advised against me going, as it seems that those days will be the optimum time for the Yervoy’s side effects to kick in. I already have a heavy skin rash and am beginning to itch like crazy. There are some major side effects, that I won’t go into, that show up during the third dose of Yervoy, which is the thing that really prevents me from taking any trip too far from home. I have to keep in mind that I am an amazingly lucky person - that I have someone that loves me, probably more than I’ll ever know, that I have been given the best care that a person with cancer could expect. And that whatever side effects I experience, I can, and I will recover.  I did it last time, I can do it this time, I will be able to experience the things that are most important to me, and I will continue to be myself. Not a cancer victim. I will come up to NY sometime early next year. I’ll keep playing music with my “Rooster” and I’ll keep making my crazy tea-kettle music.

I have more to tell, but will have to continue in the following days.
Thank you all for being so supportive of me. You all don’t really realize how much you’ve done to keep me focused and on the right track. I just want to say “Thanks!” I’m a lucky person to have had so many people to reach out to. Thank you.


PS: I had a really great time visiting my amazing photographer friend Ken and his family. We got to swim in the Eno River, play with fish, and have some great talks surrounded in the beauty of nature. I won’t forget it. Thank you so much for coming!

Tuesday, August 30, 2011

I “have a lot of ‘splaining to do, Lucy!”

So much has happened since my last blog entry. To re-cap my last entry, in July I had been generously flown down to Texas by my sister, (who was visiting from Istanbul) to see her and my mother for a week. At the time I was extremely excited about the possibility of being part of my surgeon’s clinical trial, and I had been living a straight 33 days with staples in my leg from two consecutive operations on June the 14th and June 29th. Ouch!

I had so much to look forward to on my homecoming! I couldn’t wait to get to the clinic to see Dr. Pruitt! I happily thrust my leg out to have the staples removed. As he took them out, he explained to me that his clinical trial had just lost it’s funding. What! What a blow! I’d been wondering why my Duke appointment porthole wasn’t full up with test and blood withdraws. I was thrown into shock. He told me that as soon as he got more funding I would be on the top of the list to take part in his trial. He unfortunately didn’t have any ideas to when that would be. I was dumbfounded, as the rug was pulled pull out from underneath me. I had been counting on that trial as my last resort. I kept asking Dr. Pruitt, “What could I do!”, “Who did I need to call!”, “How could I get him the money to keep going with the trial?”  He laughed, and shook his head. He said that he was going to keep looking for funding, and would let me know when there was a green light. I went home feeling I was heading for a dark place.  I did take some comfort from the fact that it would have been even worse if I had started the process and then the trial was suddenly curtailed. Poor Dr. Pruitt; poor people already involved in the trial! I just couldn’t stand by and let it all slip away - I had to do something!

I kept thinking of what official I could write to - someone who would listen to one little person with cancer - then it popped in my head! During my Interleukin 2 treatment I had been put in-touch with a man that had gone through the IL-2 process, and triumphed over the 30 cancers contained in his body. He’d told me what to expect from Interleukin 2 and explained the side-effects I could encounter. He’s been in contact with me throughout my IL-2 treatment and has checked in with me during my many other procedures.  John, (I picked this name to keep his anonymity) happens to be connected to “known” people in Washington DC, and it occurred to me that if anyone knew about how to raise big-time money it would be John. I wrote to him in a frenzy! I explained what Dr. Pruitt’s trial was about and how important it was for the trial to continue - not just for me, and not just for the people already in anchored in the process of receiving it, but for the many people who will be diagnosed with cancer in the future. I really believe in Dr. Pruitt’s trial, and I desperately wanted to be a part of it’s ground breaking history. My fingers were a blur across my keyboard. I hit send and waited for John’s response. My finger still hovered above the return on my computer when the doubt set in. Who did I think I was! It was stupid for me to assume that John could help. I was displaying actions of a terribly desperate person. Why did I even write to him!?  The bold subject line popped at the top of my incoming mail, it was a response from John! He was shocked to hear the breaks had been put on Dr. Pruitt’s trial; he told me he would be calling Dr. Pruitt, as well as another doctor who is high in the ranks at Duke to find out more about why the trial was stopped. I couldn’t believe it!  It was thrilling! Something could actually happen!

John did call them, and he told me - that he himself, years ago, had been one of the subjects of Dr. Pruitt’ trials. John has been cancer free for the last 3 years! His anniversary scan is coming up in September. He also said, “I’m a very positive person and I will do what I can to keep Dr. Pruitt’s research going.”

I’m so happy to say, that through my emails to John, I found that he’s a member of the board of The V Foundation, a foundation for cancer research started by Jim Valvano and ESPN. The V Foundation is dedicated to raising money to be used directly for cancer research through donations, fundraisers, and grants. The weekend of August 6th they raised 4.1 Million dollars for cancer research - Dr. Pruitt was offered support by John, and they are going to be working together on a program where the clinical trial won’t be so limited by funds. I’m so happy about that, but I realize that I can't wait for the trial’s funding to become available, it will take some time for things to be put in place - time I may not have. Onwards to plan B!

Wednesday, July 20, 2011

1980's Extended

Today I was looking up a photographer who I modeled for in the 80's so I could write him an email; but I soon realized that without one of the photographs he took of me to show, he'd have a hard time remembering who I was.  He's had an extensive career that has spanned over a long period of time beginning in the late 60's.  That's a lot of photographs to remember! So I found the newspaper ad that was taken for Henri Bendel's department store photographed by the great Gosta Peterson,  as well as clippings from the NY Times, Fashion of the Times (1988), and a Issey Miyake poster that was taken while I was in Japan.

I'll be doing an updated on my status, but will likely wait until the beginning of August.  I have a new PET scan coming on the 26th of July. I had a great visit to my mom in Texas, thanks to my sister and her husband, to whom I'm incredibly grateful. And I have, after 19 days (really 33 days counting the first surgery) finally gotten my staples out of my leg. I can't tell you how thankful I am to have mobility back in my leg! Thank You Very Much!!!!

Till August...

1981 Henri Bendel Ad that ran in the NY Times newspaper - shot by Gosta Peterson

Me and Mary Ann Daniel from a 1988 NY Fashion of the Times Magazine shot by Ellen Forbes Burnie

A second time I was in the NY Fashion of the Times shot by Ellen Forbes Burnie

1988 NY Fashion of the Times Magazine shot by Ellen Forbes Burnie

A Issey Miyake poster - you can see how big it is from my toes showing while I snapped the shot.

Saturday, June 25, 2011

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.


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.

Monday, June 13, 2011

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!”

Wednesday, June 1, 2011


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!