Tuesday, June 19, 2012

Keeping The Door Open

I've been researching, trying to decide whether or not I want to pursue this clinical trial. Can I handle another brain surgery? Danny would kill me if he knew I told, but tears started running down his face at the idea. He remembers how much pain I was in, and it took months and months for it to subside. I had so many complications, and now I've had a massive seizure and a few auras, albeit it was almost a year ago. Brain surgery is not a simple procedure, and the brain is a delicate beast. Also, my type of brain tumor is not like the others - most have clearly defined borders, mine is diffuse, it's infiltrated, it's intertwined with healthy brain tissue, it's messy, complicated, and dangerous. With a brain surgery, I could die - anyone in my position could. Due to the location of my tumor, I could become paralyzed. I could lose the ability to process speech. Is it worth it?

Here's a video with Dr Linda Liau the neurosurgeon at UCLA who is conducting my prospective clinical trial. This dendritic cell therapy is the most effective and promising treatment to ever exist for brain cancer patients. It's a pretty big deal.



This dendritic cell therapy treatment could cure me. That concept is very appealing. According to the research that we've conducted, there are several supplements that could also cure me, however it's exhausting trying to juggle the various combinations, playing trial and error until we get the results we want. I'm just getting started with the supplements, I'm taking a gazillion pills each day, and the dosing is all dependent upon my previous pill set since they're time dependent. I constantly have to keep on my game, up on my schedule, and it's exhausting. If I could be cured with a brain surgery and a few dendritic cell shots, heck, it sounds promising.

It costs $500 to be reviewed by the team at UCLA for the dendritic cell therapy, and in order to keep the door open, I decided to just go for it, and pay out of pocket. Luckily, this morning my mom reminded me that my insurance provides the right to get a second opinion from a new oncologist/surgeon etc. So, a few hours ago, I emailed my oncologist's nurse to get a referral to Dr Linda Liau at UCLA. I was hoping that this way my insurance would help cover a portion of the $500. Unexpectedly, my oncologist said that he wanted to read the clinical trial before he would refer me. What the hell! Are you serious? He should just refer me - it's my business. I feel like my oncologist always wants to be the one to make the decisions. I emailed his nurse back and told her the details of the trial and then gave her Dr Liau's email address. I told her that the Dr is very prompt, and that I would be contacting them again tomorrow.

It's my humble, uneducated, opinion that if I want a referral for ANY reason, my doctor should just refer me. Period. I mean, seriously, there's a chance that Dr Liau's team might reject me after reviewing my MRIs. I might not have enough tumor tissue, or my brain tumor might be too integrated into healthy tissue to safely resect. My oncologist has no right to delay my progress. This is not his clinical trial, he needs to step back. He'd better not get in my way....it's making me upset....in fact, I'm mentally toilet papering his house as we speak! No one, no thing, is going to get in the way of my healing.

I still don't know if I even want to do the trial, but at least, I want the option to be accepted. Why close a door on any treatment? I think it would be foolish of me.

4 comments:

  1. "So Cal" PattiJune 19, 2012 at 8:19 PM

    This all gets so confusing! Can't believe that your oncologist wouldn't refer you to UCLA, although some docs tend to get territorial with their patients! I think that you are wise to at least apply for the clinical trial and have them review your records. Even if you don't end up going there, perhaps you will learn something that will help you. Keep your chin up sweet lady! The answer and the cure will come when you least expect it!!!

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  2. Jess, I love the fighter in you. "...in fact, I'm mentally toilet papering his house as we speak!" That's awesome! Keep up the fight, you get what you want, and move forward. Do not let people get in your way. This is your life, not theirs, and your oncologist has no right to refuse to give you the referral. Get it, girl!

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  3. LOVE YOU!!!!!!!!!!!!

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  4. your a little rascal, you firecracker,but I love yer spunk!

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