Friday, August 24, 2012

The Money Pit Of Staying Alive

I saw the images side by side, and it seemed true, the brain tumor that had been a hot white glowing spot on my cerebellum had changed into black hole. What! Three weeks after radiosurgery and it's gone! I spread the news on FaceBook and got lots of cheers and hallelujahs, (thank you all!) but the best and funniest response that I got, one that made me double over with laughter, was from Ryan Martin.


FUUUCK yes!!!!! This rules, but I do want to forward the idea of having surgery regardless, and putting in a diamond or emerald where the tumor was and have MTV document the procedure in their new reality spin-off show Pimp My Brain (hosted by Xzibit, of course)

This was so funny to me. It's had so much replay value in my little cancer world. I bring it up every time I have a chance. Thanks Ryan! Pimp My Brain! I wish I could!

So, what all this means (the disappearing Brain Met) is that I have the OK to go to NYC to see a Melanoma Specialist for a screening, that will hopefully allow me to take part of a clinical trial. This is great news! And terrifying news!

I'm scheduled for an appointment at 11am on September 6th. I don't know how many days I'll be there for the consultation, which includes many test, PET scans, CT, MRI's, blood test etc. If I pass these tests then I will return to NY on September 17th or so to begin the trial treatment. I will be there for 4 months, a long time to be away from home.

The main drug I'll be taking is the FDA approved Zelboraf. This drug kills cancer quick! It also has many side effects, too many to list, but one being photosensitivity. This is why, while I'm in NY, I'll be looking like a NY crazy! I will be covered head to toe, in whatever will keep the sun off  me. Otherwise I may blister up and get sent to the ER.

I'm making UPF/UV Sun Protectant ponchos. I'll also be wearing gloves, yes, in the summer! I do not want to walk around as one giant blister with a single hair. For some people, hair falls out if you get a fever while on the drug, and the sun induces fever.

The second drug is called a MEK inhibitor. This is the trial drug; it has been shown that this drug keeps the Zelboraf working. Zelboraf on its own works well for about 7months. After that the body get's imune to the drug's effects and the cancer comes back with a vengeance. So this MEK inhibitor keeps the Zelboraf working and people can get quite a few years in before going into the downward spiral to death. Who doesn't want to keep living longer?  Anyone?

I have to tell you all, that getting this close to a trial has been so incredibly hard. I've been turned down for about 40 trials because of my history with breast cancer. NYU is the only one that has considered taking me on.  It's all so confusing too, because to get the best chance out of life, I have to get care so far away from home (Thank God I love NY!). This means that I'll be out of state, and out of network, and I'll be responsible for all balance billing. What does that mean!?

I have tried so hard to find out how much this trial is going to cost me. I'm calling it 'The Money Pit of Staying Alive'. Air travel, housing cost in two cities, and the completely unknown cost of my medical needs. Ugh! I feel ill and I'm already ill!

 I had called Duke to get prices on PET's, CT's, and MRI's along with labs and ekg test. That was the easy part! But I couldn't get the same information from NYU, they didn't have the codes or the information of what tests I'd need. So, there's no way to know how much my responsibility will be.  I set up a consultation with a trial manager here at Duke thinking she might be able to shine the light on what my responsibility will be; and what I can expect. Her news was not good. She said, that I and my insurance company will be responsible for my standard of care. Which means everything except the un-approved drug. You would think that a clinical trial would pay for all testing and care by the drug company running the trial - but, NO. The drug company will only pay for the MEK and a few tests regarding the MEK only. I do know that I'll need 5 PET's (around $6,000.00 each), and the trial will only pay for one. The rest is up to my insurance company and me. And, I have been informed by the clinical trial manager in NY, as well as the benefits listed in my minuscule State insurance, that insurance companies, mine included, Will Not Pay for Any Experimental Treatment. It's just so damn confusing! I just wanted a few little things....

I want to stay alive and I want to know how much it'll cost me.

I want to thank everyone who has donated in the past and those who will donate in the future. I don't know how we will manage. I fear we're getting in over our heads!

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