Next week I'm headed to the University of Colorado Cancer Center, one of the research hubs for my cancer's ROS1 mutation. Many thanks to the amazing Bonnie J. Addario and her lung cancer foundation who helped to coordinate this for me. Although things are going quite well for me right now on Xalkori, I know this won't last forever. The median time before progression, meaning when the cancer becomes resistant and starts growing again, is eight months (there's that pesky eight months again). While I definitely hope to be on the far right side of the graph, I want to get Plan B in place for when I need it.
I am really excited and nervous to discuss possible options, trials and so forth. I am also nervous about weird stuff, like the fact that I will be flying while carrying my ridiculously expensive and life-saving meds on my person. What if TSA finds some reason to confiscate them? Jason assured me that it would be completely illegal for them to take my prescription meds, but still, it's a little nerve-wracking.
Then, when I get back, Zander will be having surgery to get ear tubes, a tonsillectomy and adenoidectomy. I know it is a very routine procedure and I think it will help him a great deal in the long run, but, I'm a mom, so I worry.It made my stomach drop when Zander referred to his ear appointment at the Cancer Center, and that he will be having surgery at the Cancer Center. I tried to calmly clarify that while the children's hospital is in the same complex, his experience will be very different than when Mommy goes to the Cancer Center. And there will be lots of ice cream.
.....
I renewed my driver's license today. Whenever I do something like that there is this tiny part of my mind that wonders if this will be that last one I have. I remember signing my 2-year cellphone contract this summer and chuckling darkly to myself about the chance of me actually fulfilling my side of the agreement.
.....
You know, this may not be the best blog post title, since the wizard in the story turned out to be an overrated fraud. Of course, the heroine of the story also realized that she had the power to save herself all along....
I am really excited and nervous to discuss possible options, trials and so forth. I am also nervous about weird stuff, like the fact that I will be flying while carrying my ridiculously expensive and life-saving meds on my person. What if TSA finds some reason to confiscate them? Jason assured me that it would be completely illegal for them to take my prescription meds, but still, it's a little nerve-wracking.
Then, when I get back, Zander will be having surgery to get ear tubes, a tonsillectomy and adenoidectomy. I know it is a very routine procedure and I think it will help him a great deal in the long run, but, I'm a mom, so I worry.It made my stomach drop when Zander referred to his ear appointment at the Cancer Center, and that he will be having surgery at the Cancer Center. I tried to calmly clarify that while the children's hospital is in the same complex, his experience will be very different than when Mommy goes to the Cancer Center. And there will be lots of ice cream.
.....
I renewed my driver's license today. Whenever I do something like that there is this tiny part of my mind that wonders if this will be that last one I have. I remember signing my 2-year cellphone contract this summer and chuckling darkly to myself about the chance of me actually fulfilling my side of the agreement.
.....
You know, this may not be the best blog post title, since the wizard in the story turned out to be an overrated fraud. Of course, the heroine of the story also realized that she had the power to save herself all along....
May my yellow brick road lead to safe flights, fruitful meetings, incident-free procedures, and paths to healing.
8 comments:
Yes, nerve-wracking but exciting. I understand about the driver's license thing, too. I just renewed mine this month and I have just received my new cell phone with a new 2-year contract. My best wishes to you at Colorado!
Good luck Tori! I hope all goes smoothly for you and I'm so curious to learn what they recommend for you. I am in the process of setting up a phone consult with Camidge myself. Tell him I say hello :-).
Best,
Lisa
Happy travels Tori! It is comforting to be in the know about options for down the road.
I wish you many months beyond 'average'.
Thanks, Ruth. Let's hope we both have to renew our licenses many times.
Thanks, Lisa. I will definitely let you know what I learn.
Thanks, Kim. I hope to follow your example and stay on Xalkori for a long time.
Turner had his tonsils yanked. It was the BEST thing we ever did for him. It allowed him to sleep threw the night. Good luck to you and Zander.
I just attended an ALK patient forum in CA with Dr. Camidge and Dr. Shaw. It was amazing and I got so much great and hopeful info.
I am also ROS1 and been on xalkori for 9 months now. I totally understand your thoughts about your cell contract. I thought the same about the gym contract.
We are fighters. We are survivors. We will fulfill our part with the grace of God.
The 2nd generation drug to xalkori, ceritinib will be on the market in 2-3 months. Good news for us.
Keep fighting!
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