Sunday, July 29, 2012

La femme au masque de fer

Time is warped for me. It goes slow, so slow, I don't know how or when I will ever arrive at the moment I feel I need to be in. The events that I want to take place seem so far away and unobtainable.
I'm just waiting for time to pass. Waiting again, to know what my future holds. I have to be careful with the time I have. I don't ever want to wish it away, but sometimes it's hard living in the moment. 

My Radiosurgery went well. It didn't take that long really. 45 minutes clamped on the table. What made the experience difficult, was that the face mask that had been made for me in the previous week had shrunk about 2 sizes when it was allowed to cool completely. I thought I had been prepared for the experience, I thought I knew what the mask would feel like. I took two lorazepam to keep me calm while on the table; I thought that would have been enough preparation, but once I was in the radiosurgery room I felt rushed. Everything was done at breakneck speed. My belongings had been handed off and piled up in a chair in the corner as I was led to the table. As I laid down, the back part of the mask cradled my head. Within the first second my head hit the back,  the front part of the mask was placed over my face and tightened, clamping me to the table. I was shocked at how tight it was! Had it been any tighter I would've had the marks of the mesh on my face, it reminded me of a very long day in fishnet stockings; bloody cross-marks cut into skin. 

Another problem I had was that my left nostril came up against a cross-mark in the mesh blocking off my air supply on that side. I felt panic and wanted very much to reposition myself for better air inhalation - but that was not a possibility. There was absolutely no wiggle room! I wanted to kick and thrash about, but I didn't. I tried to gulp down air through my mouth when I realized that in the rush I had forgotten to take a swig of water or coat my lips with balm. The technicians had run behind protective glass as soon as I was bound in position, and through the loudspeaker I was informed that we were now waiting for the doctor to arrive! What?! I was fighting hard not to scream, I had to take a step back into calmness. I had to keep my eyes shut and visualise myself in some other place, somewhere floating in a mass of open darkness.

I then heard voices announcing that the doctor had arrived and felt someone kneading my arm while leaning in close to say I was doing great and we would be done soon. I recognized the voice. It was the voice of the doctor who had his hands roving up and down my arm. I said to him, "If anyone is looking for the perfect form of torture;  this is it!" I think I remember him letting out a half-hearted chuckle; but I can't be sure.

The process finally began! The table revolved around in different postions pausing for blasts of loud sound. I could sort of see through the mesh, the lazer beams lining up as the table came to a stop. As far as the actual radiation went, I could feel no change, no pain, no feeling other that the tight mask holding me in place. I couldn't quite get the rhythm of mouth breathing; it caused more dryness and made me need to swallow or wet my lips, which kept me in a cycle of of unrest and pure panic. If I couldn't swallow properly, could I drown if it went down the wrong way?

The table had remained still for quite few minutes, and I heard a small crowd of steps surround me. It was announced we were finished and I could feel the clamps being loosened. I shot up, catching my breath and feeling like I had just been rescued from being buried alive. Thank God!!

I was led out of the room and back to Dan who had been patiently waiting. I was a bit disoriented from the experience, and we discussed what our next move should be. Our choices were to take a taxi home, call a friend to pick us up, or take a taxi to the garage where our car was being fixed. Yes, the day before while out doing errands, the starter on our car had broken in half! Right in the middle of grocery shopping and laundry! I know it was a bit silly to go pick the car up at that moment, but we had plans for the next day, which was Dan's birthday. We got home safely and I slept into the evening.

The following day was lovely. Presents for Dan in the morning, breakfast, and then for lunch we went out to play a game of pool! Dan won! Then a nice evening watching "Norm"

So now I'm just waiting. At the end of three weeks we will be able to see if my brain tumor has stabilized, and if so, I can then make arrangements to see a melanoma specialist at the NYU Langone Medical Center. In the meantime, I'm painting, playing music and watching The Norm Show with Dan and Glen.

Thank you to all that have been supporting me, you all are always in my thoughts!

Tuesday, July 17, 2012

Cancer On My Mind

Yes, Literally! A 4mm spot has appeared in my Cerebellum! I have been trying desperately to get into a Clinical Trial for weeks and weeks- and it seems like every step of the way I've had something come up that looks like it will knock me out right off the bat. It seemed like Tampa and Philly were the only trials coming along nicely, but I went over the trial managers head at Tampa while she was on vacation and talked directly to the drug company. After reviewing my case they decided I wouldn't be a good candidate. I was holding out for a trial in Philly - but the Philly trial wanted something that was easy to biopsy. I have cancer deep in the cavity of my chest, lungs and possibly in my small intestine. I also have a small lump on my arm, so I went to the clinic to have it biopsied. It was benign, Hooray?*~##@*! But this time I wanted it to be cancer- because it was a requirement to get something biopsied to get on the trial!

Anyway, after the biopsy I was chatting with my Doctor about how I'd been feeling - tired, clumsy, overheated- (driving around without air conditioning) and I've even been dropping things as well. My typing skills have gone way down the pan. My doctor's words were 'Uh Ho!' and, he scheduled me for a Brain MRI.
I thought nothing of it at the time. I ran right out to fax some papers over to NYU thinking I'll be in NY in a few weeks! My oncologist had told me he wanted me to go under the care of Dr Anna Pavlick @ NYU, as she is a melanoma specialist. So while I'm out faxing NYU some green-light papers - Dr Morse is emailing me that I have a 4mm Brain Tumor. You can see how this puts a damper on my plan!

Today I had to have head mask made for me out of plastic mesh. I had been freaking out about it all day - the hot plastic was then laid on my face and pushed around until it formed to my features. I then laid there until it hardened. I felt trapped!!!! Then a damn FLY started landing on me, dancing around on my legs and then buzzing around my vice-gripped face. GET IT OFF ME!!!!

What I had been fearing for the last few days, was indeed horrible! Thank God I had my Rooster by my side making jokes and reading me his hospital observation poetry!
This also sums up the way I felt -

That last line should be -"Are You Caught Forever By The Curse Of The MRI"

I go in to have my brain box zapped on Tuesday the 24th! YIKES!

I'll let everyone know how it goes!

On a much better note I have a NEW Tape out called, Moon Mountain by me, Letha Rodman Melchior, on the great Label Called

I am so happy to have these works out in the world - working on this collection gave me something to look forward to and to keep my mind from going into dark places. 
Thank you to you Ryan Martin for making it happen.

Please get yours at Robert and Leopolds website.
There are so many fantastic artists on that label, and I am honored to be among them!