Wednesday, February 20th was our follow up appointment with the nuero oncologist at Vanderbilt and we were scheduled for an appointment immediately following that with radiation. Ben and I had done a lot of research over the previous week since finding out what his diagnosis was and went into the meeting prepared to listen, but leaning towards the wait and see approach rather than taking further action right now.
Because we have made so many drastic lifestyle changes at home over the past month, Ben and I feel that he has made a good start towards beating this cancer without the need for radiation and chemo. The side effects from radiation could be detrimental. Since they radiate the entire area where the tumor is plus an additional 1cm area in all directions, a large portion of his brain would be subject to this radiation. Radiation on the brain has multiple side effects, the most scary of which is the possibility of losing cognitive abilities and becoming mentally handicapped.
We brought up these concerns first with the oncologist and then with the radiologist. Both of them responded that they didn’t feel making lifestyle changes would make a difference, and why would you want to make drastic changes, wouldn’t that lower the quality of the short life you have left? They explained that standard of care was chemo, plus radiation, and then follow up MRIs every two months for the remainder of his life. They seemed to take personal offense to the fact that Benjamin wanted to wait and see if the tumor came back before doing treatment and warned us that this was an infiltrative type of tumor that was most likely still there and that by the time more growth was to show up on the MRIs it would be more aggressive and harder to treat. We asked his prognosis with treatment and were told the median was 2-5 years, but without treatment it was 1-2. They said that people never turn down treatment unless it is for religious reasons. We asked about the effect it could have on his cognitive abilities and they shied away from answering that, and only stated that yes, it could affect his functioning in those areas. They said said that most people are concerned because radiation causes cancer, but that research shows that it doesn’t cause cancer for another 20 years or so and that with the type of cancer he currently has he wouldn’t be around long enough for that to be a problem.
Most of what the shared scared me and made me second guess the decisions that we had already made, but hearing them say that they didn’t expect the treatment to help enough for him to be around much longer than without treatment just made us both realize that we have to do something outside of conventional treatment. We scheduled a follow up with his regular civilian doc at home and spoke with the military about traveling to another large treatment center for a second opinion.
We continue to seek the Lord’s Will for our decision making and in the meantime are trying to get into a healthy routine in our everyday lives. Benjamin returns to work full-time tomorrow and we are planning to travel to NC in two weeks for my sister’s wedding.
A journey with our family through multiple sclerosis and muscular dystrophy. As well as a look into our struggles and faith!
Being still for Caitlin Grace
The Joy of the Lord is our Strength
Finding Beauty in the Everyday.
Chasing Christ in the Chaos
Learning to Embrace the Storms of Life