Wow, I can't believe that my last entry was 2 months ago! It was a really busy time with the holidays and also with rehabbing from the spinal surgery. and most importantly, all my kids being home from college so you can bet I was soaking up every minute I could with them.
So, to catch up: I just had a brain CT and a bone scan (because my insurance co would not pay for a PET scan) which showed that the BRAF therapy is working and the tumors are shrinking! The tumor on my spine has shrunk by half. One tumor in my left lung that has been a concern is down by a third. The spot on my brain has not changed in size but the swelling around it has decreased and there are no new lesions. So it is time to transition back to immunotherapy, this will be another approx 6 weeks. We will only use the less harSh immunotherapy drug, not both of them. Pray my body accepts this compromise!
Now my radiologist still wants to do the high-intensity radiation on the spinal tumor. It would be five consecutive days. I am no longer wanting this radiation as long as the systemic therapies are working because the radiation would injure my esophagus to the extent I would not be able to swallow for a week or two. So for one thing, I don't want to be in that situation, and for another, if I have any trouble with the immunotherapy and have to go back to BRAF again, I wouldn't be able to swallow the BRAF pills. This is my oncologist's opinion, too, so now I have to get my radiologist to get on board. She also wants me to have an hour and a half MRI. No grazie. I'll need to be knocked out for that. Those MRI's SUCK.
I'm doing much better physically . It is due to the help of drugs, though, I have to admit. Gabapentin has gotten my right leg working again, I can walk and do stairs but still have some loss of balance so I'm working with physical therapy still, and using a walker on outings. BUT I'm going on outings! This weekend I was thrilled to go to MSU to take some things to Jake and take him out to dinner. Then on Saturday I was able to get out to Natalie's horseshow and walk around the barn all day (taking rests) and see her rides. THEN I came home and rested a couple of hours, and then left at 8:30pm for Caleb's soccer game. I LOVED seeing all my kids do their things this weekend. I'm exhausted today but there's lots of football to watch while resting. My neck and shoulders are still pretty sore (remember none of these adventures would have happened without the help of meds so I'm not independent yet), and my collarbone still hurts if I tweak it wrong. But, I'm getting to do a little more each day so I have to stay positive. I need to get back to driving. That is my major goal right now.
I'd like to thank everyone again for the food, cards, car rides, messages, prayers, and all the kinds of support you have shown me. There are dark days when I get stuck thinking about the things I'll never be able to do again but I have to keep in mind that I am so grateful to still be here. That's the important thing.