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.
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!