About two weeks ago I was back in D.C. with friends. I spent several days at the Cancer Center at NIH, while my 3 friends, Lena, Karen, and Bernice, went on a fast-paced tour of the city's highlights. They saw nearly everything they hoped to, but you just can't do it all in a week!
They toured the White House (East Wing) during the day, and the four of us had a special West Wing Tour that night. Because I had undergone a PET scan that day, the alarms went off as we went through security. Seems I was emitting a pretty high level of radiation! Took us an extra 20 minutes or so to get the all-clear, but it made for a very memorable visit! The radiologist apologized the next day, saying he had intended to give me a card that would have explained my radioactivity!
The results of my scans and tests were positive, though they came with a harsh realization. First, they told me there are no new tumors, and the ones they've been studying have not grown. The reality is, however, that I'll have to remain on this chemo combination for as long as I can tolerate the side effects or as long as the cancer remains stable. It hadn't quite sunk in before that they don't anticipate a "cure." They did lower my dosage by a third, with hopes that the side effects won't be quite so harsh as before. So far (after 2 weeks back on the Tarceva) I'm feeling okay, just tired with digestive upset and skin issues (rash, dryness, hair loss).
The second bit of good news came a few days after I got home: My Physician's Assistant called and said the radiologist rechecked the scans and thinks there might be a slight shrinkage in one tumor, about 1 mm. I was pretty elated!
We have been waiting to learn if the insurance will cover the treatments locally, with NIH providing the drug. Finally, on Saturday the mail brought Good News #3: YES, I'll be responsible for just a few hundred dollars per month--as opposed to a few thousand! Since it was still an unknown quantity before, I am traveling to D.C. tomorrow, just overnight, to receive my avastin infusion. Then I won't have to return until the week before Thanksgiving, when I'll get more scans.
I am so fortunate to be in this trial of these two drugs! And so lucky to be the beneficiary of the medical research and dedicated staff of the National Institutes of Health!
Thank you everyone for the prayers, the offers to help, and for every kind thought and deed.
Bless you all!
Gayle
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