Wednesday, August 20, 2008

Are You Sitting Down?

Okay all you people out there...Friends, people I don't know, people who really just want to know about Robert DeNiro, people I knew when I was a wee one, people I have kissed, people whom I ran away from...

All you people...Listen up.

I finally saw Dr. Shaum today and one of the possibilities of getting out of this mess is something called a Clinical Trial. They do these things all over the world. Try things out on us patient guinea pigs and three quarters of the time these things actually work and voila you are once again healthy for long periods of time and then they do another trial and you continue on that healthy path and you continue on until finally it might actually be your time to scoot on out of here but you got to live for a while and maybe swim and do the things that you once loved.

Well, one of these trials uses a drug called S1. It's a wonderful drug for just what I have. Only one little glitch with S1...It's illegal in America and can only be obtained in Japan. Aha. Why this is so I have no idea but there you have it. So yes, I could maybe get on a plane and spend my time in Japan which might be interesting but could be a bit lonely since I'll still have my IV with the me and I won't really be able to go out at night so the next best thing would be to find someone somewhere who had some sort of connection in Japan and maybe knew a doctor there who could send me the drug and doesn't this sound like a very exciting short story with a possible happy ending.

Now, don't feel badly if you don't have a Japanese connection because there are other trials that are more local like UCLA for instance. But just in case you know someone in Japan just put it on the comments and I shall follow through.

Dr. Shaum said she would make a whole bunch of calls in the next couple of days and we should be able to move on by next week. That sounds good to me. And she told me that often chemo affects your brain waves which it certainly has mine because they are not the waves of the old Trish, that is for sure. So we're working on that so maybe by Thanksgiving I can feel like myself, whomever she may be.

I'm exhausted. This was a long day. Just go to sleep and think "Japan" tonight and if anything pops up let me know. S1.

I'm going to try and swim soon. I'll tell you how. Can it be that things are looking up? Is that possible? Here's a good thing. I gained five pounds. And that is a very good thing. Must rest know. I'm not used to good news, no matter how small it might be.

I'll be waiting your reply................................Sayonara..........................


Other People said...

I have to old Japanese teachers I could talk to. I'll find their e-mail addresses.


Candice said...

Hi ya Trish - It's Candice - Do you remember Lesley Briskin? She spends alot of time in Japan, she is Zen Buddist - I will contact her and see if she may have any contacts for you, and I will let you know. Your news sounds promising, and I am so excited for you! Big hugs to you!!!

Sister Mary Martha said...

I have a friend with international connections. I've contacted him.

OldOldLady Of The Hills said...

I know someone who was married to a Japanese lady...They are not married anymore, but they are good friends...(Not sure how that works, but.....) And SHE is living back in Japan. I will ask him if he thinks it is possible that she might be able to help. I have no idea what might be possible, but...If I don't ask, I won't know....! Do you know if this drug is easily available to people who live in Japan?

This sounds really really promising Trish...! Hugs, My Dear.

SouthernDaze said...

I have a friend in Japan. She is a breast cancer survivor (like me) and, thus, has contacts with an oncologist and others in the medical field there. She's a wonderful person and I'm sure she'd love to help. Let me know if you want me to connect you up with her.

SouthernDaze said...

I've made contact with my friend in Japan. She's sending an email to her oncologist today to see if he can help.

Trish, do I need to post my email address here for you so you can contact me directly, or, are you able to somehow contact me via email through my blog comment to you? I'm not real blog savvy.

Just one of your fans,

Ellen said...

Trish, I went through the exact thing with my husband. We went to Mexico and bought the drug (interestingly, Oxalyplatin, which you're now so easily getting) straight from the lab, because he wasn't "suitable" for clinical trials, and doctors weren't allowed to give it to him. I have a friend who's a university professor in Kobe. I've just written to her to see what she can do. She's fairly well known there, so we'll see. I sent her a link to this blog.
Incidentally, my friend Ken, who has the esophageal tumor is pretty weak right now, so I'm not sure he's even looked at your blog. He wants to get in touch with you, but it won't be for a while. He's right in the middle of the chemo and radiation. Maybe if you emailed him.....? He can't talk well, as the radiation is affecting his voice.
Hang in is coming.
Ellen Butterfield
ps: Andy....get my email address from Trish!!