Tuesday, October 28, 2008

Met With A PI At NIH!

Well, we woke to an alarm this morning since we had to be at NIH at 8:30 and goodness knows rush hour traffic was not going to be kind to us. Of course it was also raining, so that made the traffic much worse. Sigh. For once the parents woke up Captain Adorable, instead of him waking up his parents (poor guy--getting woken up to spend his morning strapped into his car seat).

We left at 7:45 and got to NIH at 9:00. Then we encountered the security check point. Quite a pain and rather intimidating. By the time we got inside it was 9:15 or 9:20. My FIL was waiting when I arrived. He was dressed in a suit and had instructed me to wear once as well. His theory is that wearing "the uniform" (his word for a suit) is extremely important. Good thing I have 3 suits left from the days when I thought I would be a lawyer and worked in a judge's office and a law office...sigh. We were waiting because he had somehow convinced a nurse (who is listed as the POC (Point of Contact) for a trial FIL thought might be good for me) there to fit us in, to give us a few minutes of her time to meet me and help evaluate whether I would be appropriate for trials being offered at NIH. The Captains hung out in another waiting room, nearby, but separate. Which is probably good, seeing as although Captain Adorable is the apple of my eye, his presence is somewhat disruptive. (Partly because he is so cute and sweet and partly because he is so very curious and thoroughly inspects every room he is in.)

Somehow we lucked out and got in to see the POC without too much waiting and to my surprise (and my FIL's surprise, and of course he realized it waaaay sooner than I did), her boss (the PI (Principal Investigator) was there as well. Totally super good luck! They were clear that they had very little time for us, so I asked my FIL to do the summary and introduce my case and the reason we were there. Plus, having him talk first means he set the tone for how to speak (or how to tweak their preception of us/me). I was happy that both the POC and the PI were sitting there with the summary of my treatment so far that FIL had emailed them, and felt that they were listening and interested. They were nice, but not gushingly so. The way I explained it to Captain Obvious later is that my current oncologist is kind, but treats me with an I'm-so-sorry-for-you attitude. These people were interested in and paying attention to how to get on with the treatment.

The PI told me a few new things, like: I fit in a certain category of cancer, which is made up of women, who hardly or never smoked, with slow-growing adenocarcinoma. He immediately had 3 trials that he thought would be good for me and told us about them in order of what he thought would be best. All 3 trials are for treatment administered orally. (HELLS YEAH!!!) They have varying amounts/types of side effects...none too bad...but I expect side effects because of course I have accepted the fact that there is a price I have to pay for everyday, no matter how small, it is still a price. He also told my FIL to email him the (weird, half-hearted, to my eyes) list that my current oncologist had put together and he would rank the studies she had suggested! Both FIL and I thought that would be fabulous, as figuring out how to even just evaluate, much less rank these studies is quite difficult. So now I have some homework to do. I have to contact my current oncologist and ask her about certain tests on my tumor, which I did via email earlier this evening. Depending on the results, we will know which of the three recommended studies I would qualify for. Of course at the same time, FIL is going to get the ranked list of other studies with the PI's help and we will see if one of those might fit me better. But right now it looks like I will be going to NIH.

Going to NIH would be great because I can continue to live at my house (quite the understatement, don't you agree) . But I might have to ask people who live near me (my MIL and perhaps one or two other trusted people) to care for Captain Adorable if I have to do certain types of treatments...I won't be able to take him with me every time...although I can see him kind of enjoying going to NIH because we can take the Metro there, or, we will take the Metro instead of driving because Captain Adorable will like it so much more. And of course if I need it, I know I can count on my Mommy to come stay with us, too. But I think she prefers to live at her house, too. :)

5 comments:

AP said...

I'm so glad that things are moving forward with options! Hopefully, they can get you started soon.

Mandie said...

sounds great! Best of luck to you!

Amina said...

Good to hear you sounding so up-beat. And wonderful that they take your case seriously and want to do the best for you. Somehow comforting to know you 'fit' in a particular group. That means the studies are getting more and more specific.
Keep up the postivie stuff!
hugs and love as always.

Anonymous said...

I have been reading your site for just over a couple of months - I think you are an amazing person to cope with so much - you seem to handle every situation with so much style and grace. All the best

Anonymous said...

Happy Halloween!