Thursday, December 11, 2008

Visit To Tennessee, Then Start Trial

I visited an oncologist at the University of Maryland on Dec. 8 and the National Cancer Institute on Dec. 9. I had good experiences at both places. I have decided to go with one of the trials at NCI. JHH did send a block (of tumor tissue) over to NCI (after the aforementioned prodding by my sweet MIL) last week and now that block has been cut into slides and sent to California for more testing. If the KRAS test comes back as being "wild type" (or, normal) then I will do the first choice study. If it comes back as being mutated, then I will do the second choice study. No matter what, I will spend 2-3 days (Dec 22 and 23, or 22, 23, and 24) at NCI being tested and signing forms. Whee. I will start treatment that week, though. Thank goodness! Not being on treatment is wonderful but at this point it feels dangerous...giving cancer a good chance to pop up anywhere in my body! Scary, scary stuff.

So, Captain Adorable are flying to Tennessee on Dec. 14 to hang out with my parents and on that Saturday my Mom is driving up with the two of us. I will be abandoning my return flight from Tennessee, but since I have to be at NCI at 8:00 on Monday morning, my Mom rightly pointed out that coming back on Sunday would be pushing it quite a bit.

I am no longer angry/sad about the horrible JHH mistakes. I just don't have the energy to maintain that kind of attitude. It feels so much nicer to let go, put it to rest, and move on. I do not know how much time I have left, but I do know that I want to spend that time enjoying my life instead of being angry over something I cannot control or remedy any more than I already have.

Here are two things I wanted to mention. 1) At both visits, the oncologists decided to have my tumor tested to see what kind of cancer it is. Both Captain Obvious and remember asking my current oncologist about this during our very first visit back in October 2007, but she said at the time that since the tumor in my lung was SOOOOO big, it was obviously the primary and so the testing was unnecssary. However, you may not know that the start spot of the cancer (where the primary is) is what determines what type of cancer you have, and what kind of cancer you have currently determines the type of treatment best for fighting that cancer. So, it is rather important! I am glad that both UMD and NCI are doing it, so I will have independent test results. 2) The NCI oncologist, upon learning that I was diagnosed with stage IV lung cancer over a year ago, said "Well, you're doing really good." That damn statistic immediately popped into my head (15% survival rate 5 years after diagnosis). However, while feeling that familiar fear and worry, I also felt "yeah, I know what the statistics say, but I am an unusual case, and probably have a much better chance of survival than the statistics say!" So I was a little surprised to realise that I felt that so strongly.

4 comments:

AP said...

You really seem to be in very good hands now and it comes through both in the treatment you describe and the attitude you project in your post. I am keeping you in my thoughts and prayers and am so delighted for you that treatment is moving forward.

Diana said...

So glad you're feeling better, babe. Positive thinking! And cookies. Lots of cookies. :)

Amina said...

Yes! Absolutely useless to stay mad. It probably produces all kinds of toxins in the body and makes you grumpy as well.
Good to hear things are on the move again - getting sorted before 25th gives you time to have a happy christmas, or whatever you choose to celebrate.
I notice we get 2 new year's days in one week which is great for short and long-term resolutions!
love love love

Mandie said...

I love your attitude! Best wishes on your trials! :) I will be thinking of you.