Here’s the short version: the amazing and very knowledgeable doctors at MD Anderson Cancer Center’s Endocrine Center don’t recommend surgery right now. They said to go home, live my life, and “learn to dance with my disease instead of battling it.” My surgeon said that this disease, and the cancer that comes with it, is a part of who I am just like my eye color and brown hair. Cancer has a third outcome beyond just dying or being cured: learning to live with it. They did a lot of baseline tests and full body scans, and will monitor me remotely and see me back in 18 months (or sooner depending on my every-six-months test results). I will also bring Owen with me when we return so that he can be monitored proactively and established as a patient with their expert pediatric endocrine team.
Here’s the longer version:
I wasn’t expecting to feel relieved at the thought of leaving these cancerous lymph nodes in my neck and letting them grow. But my surgeon said if she does surgery every time we find a suspicious lymph node, I would be having way too many surgeries and none of them would be curative anyway. She said her goal is for me to live as normal a life as I can with as few interruptions for surgery as possible.
Michael and I were blown away at the expertise of these doctors and their knowledge about MEN2a. It’s not often we meet anyone (even a physician) who deeply understands our situation. Finally, I feel like Owen and I are in capable hands.
One of the best things I heard from the doctors is that if Owen develops pheos, we can catch them before they become enormous and maybe even save a small portion of his adrenal glands so he won’t have to live with adrenal insufficiency as I do. And this is only with the medical advances and technology that exist today–I can only imagine where we will be if and when he develops any pheo tumors. The idea of him not having to deal with medullary thyroid cancer (which we already prevented with his thyroidectomy) AND being able to rid him of the pheos without losing his adrenals is beyond relieving! Lots of joyful tears were shed after that appointment.
We feel blessed to have had the means and opportunity to travel for such quality care and thankful to everyone who supported us. Thank you to my “angel stranger” who supported and encouraged me so much in the trials and bureaucracy of getting an appointment and navigating the intake process (Jessica you know who you are). A HUGE thank you to my parents and their beloved dog Elliot for taking such good care of Owen while we were gone.
And my last thank you is the biggest one. Thank you to my incredible husband, who didn’t know what he was signing up for when he promised to love me in sickness and in health. He took time off work to sit with me for hours and hours waiting for airplanes, appointments, blood work and scans. You are my best friend and I love you so very much. On to our next adventure! 😉