Jen here. I'm in Seattle for a little bit. I was supposed to come up for Halloween with Jess and the girls, but surgery got in the way of all the fun. Other than being super tired I am doing well and continuing to heal well. It's freezing up here. My blood has definitely thinned since living here.
I'm having a lot of fun with my nieces. They are incredible sweet and kind little girls and it's really awesome to spend some time with Chad and Jess.
The tumor board met Thursday night and Dr. Weismann called me Friday as soon as he finished his surgeries.
The board is recommending that I undergo another surgery instead of radiation. Dr. Weismann said that he wants to remove another large section of my tongue in a "uniform" manner as well as some lymph nodes. Last year we did a sentinel node biopsy to ensure that the cancerous cells were not spreading into my lymphatic system. This time he wants to remove and sample some lymph nodes that are closer to the surgical site as we know from PET scans that it's not moving into my neck or chest.
The purpose of an additional surgery is to sample the tissue in a more targeted manner than we have been. If all of the tissue comes back clean, then they will put me on watch again through appointments and scans. If the there are cancerous cells then we will have a better idea of where it is coming from, what it is, and how to get rid of it. At that point we will re-evaluate radiation and other treatments.
The purpose of this surgery is to avoid having to put me through radiation. Dr. Weismann and the tumor board agree that it is a moderate approach to removing the cells if there are any left. As I've mentioned before, radiation would put me at risk for long term side effects such as severe harm to my mouth and the creation of a possible cancer 15-20 years down the line.
Dr. Weismann consulted with Dr. Dent this afternoon and Dr. Dent is supportive of this approach despite his recommendation for radiation after my surgery a couple weeks ago. Dr. Weismann will be performing the surgery this time around and will then monitor my case afterward. I do not have a time frame yet for when all of this will be happening again. Dr. Weismann said that he needs the site to heal before we can go back in. I don't know if "fully healed" means a couple weeks from now or a couple months from now. I will know more when I have my next appointment with him, which I will schedule on Monday
I have also called Dr. Koka to tell her the tumor board's recommendation and it is possible that she will be taking my case to her own tumor board. The more eyes on it, the better, because as all of the doctors keep saying, "this is a rare case we're dealing with".
So, we continue to be in a bit of limbo and there continues to be more questions left unanswered, but we'll take it over radiation for the time being.
Much love to you all and thank you for your love and support through all of this. It means the world to us.