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!