Waiting on Trial, got Brain Mets...

[julierene]

Yes, they put me on steroids. 4mg three times a day. I took in the article, and they felt like the WBR was the best route b/c of all the little spots. They feel 80-90% sure that this will buy me the time I need to start the trial in early December. However, now I worry about the bone mets in my back and hip, and the stuff in my liver. It's 4 more weeks to wait, where 4 was already enough - as we can all see.

I talked with the experiential researcher today and he told met this was the right thing to do. We don't know if the experimental drug will go through the blood/brain barrier - none of the mice got it in their brains. They practically got it everywhere else, being born with Li-Fraumeni Syndrome. But the mice lived normal life-spans after the treatment, so I just wanna be a mouse right now.

My p53 overexpression has been known for about 5 years now, but I know that it doesn't really work. So the idea that they can put a wild-type functioning p53 tumor suppressor gene into my cells seems like such a novel approach they have been working on for all these years.

Many of the test subjects that went before me were good guesses as to who might be p53 positive, but none were confirmed and only one out of about 12 have even responded with 5 weeks of stable disease. I'm not too sure how I feel about it, but I actually have the perfect diagnosis to test it on. These people may not even have a p53 deficit in their tumor cells, where I have it in every single cell in my body. It's a systematic mutation and gene deficit. It makes so much sense right?

Just getting the p53 in there has been one of the biggest challenges, and now it seems like they finally got a good delivery in a fat liposome delivered with nanoparticle technology, that doesn't get eaten by the body's immune system before it makes it to it's destination. I want the treatment so bad, it was excruciating to wait 4 weeks with no treatment. Now I have to wait 4 more weeks.

I finally got excited for the first time back in September when I got approved, and the thought actually occurred to me "Maybe I shouldn't have cashed out my 401K". I never looked back on that decision until about a week after I got accepted into the trial. Now I feel like i've got this huge hurtle to go through trying to gamble again with another 4 weeks. I guess I have to count my blessings, they were saying I might have to wait 4 more weeks after the radiation to get started.... and I knew I didn't have 12 weeks to be waiting around to start this with nothing but WBR inbetween.

I was thankful that they waived the 4 week period. I already put my life in their hands for 4 weeks, and I have very little options left. I have 3 young children depending on me, with a moron ex-husband and his new little wife trying to take over my position as their new mom.

I just wanted to give a big BIRD to them and say, "I'm not going anywhere, you're not going to get any life insurance from me, and I hope you won't get any Social Security from me either!" The bum wouldn't work no matter how hard I tried, until he got his new little wife. Strung me along for 3 years with no job, making me work through chemo with barely any salary, refusing to work... it was the worst. He just got married in June of this year, and said "Before I get married, I need to repent for my sins. I cheated on you 9 years ago after our second daughter was born back in 2000."

After being divorced for 2 years, he finally decided to tell me why he gave up on our marriage? When I asked him why he did it, he said "because I knew i could." He KNEW he could? I said, "No, you couldn't. You were married. I loved you and cherished you. Why?! Give me a real reason." He never would, and he blamed me for being manipulative, hateful, vindictive, and hoped that I would "wallow in my own anger" at what he did because I wanted all my questions answered. Said he "couldn't remember" tons of things about how it happened, if he flirted with her, why he took her to his work between classes on a Saturday, why he put her in his car knowing she had a cheating husband too, could have exposed me to STD's.

I will likely never get the answers, and his new little Mormon wife totally accepted him knowing all this and knowing what all he has done to me. How can someone love someone else who does that to another? I am still dealing with so much hurt from all that and how I feel I wasted 12 years of my life on him.

I now have a wonderful boyfriend that I really love though, so I can't really complain. He cares more about me than my ex ever seemed to. I just look back and wonder why I ever got involved with him, and I can only see my mistakes as just being vulnerable to his lies. He lied so well, I hardly didn't believe he really cheated. I thought maybe he just wanted me to stop asking why he divorced me and made up the story to anger me and satisfy me. But it wasn't so, he actually did it "because he could".

I feel like he just robbed me of some of the best years of my life, and all I have left is the sick ones for my relatives and friends. I hate him for doing that to me and I don't know if I can ever forgive him.