We spent much of yesterday and some of today at the cancer center, getting ready to fight the Damm Spot.
We met the radiation oncologist who is directing the radiation therapy (as well as his resident, nurses and technicians). Dr. A has an interesting bedside manner. He's not unpleasant, just different than what we've become used to.
He told us, "The unfortunate thing about this tumor is its location." I sort of laughed in response -- as if the only thing bad about the tumor is its deep, dark hiding place.
When I asked how many of these tumors he's treated, he answered that an adult glioblastoma of the brain stem is "as rare as hen's teeth." Sadly, they do have lots of practice with children who have a similar tumor in a similar location.
Dr. A will determine the best kind of X-rays to use and work with others to map the best entry points for the radiation. We'll meet with him and/or his resident once a week so they can check Steve's symptoms and reactions.
Today Steve had a CT scan as part of preparation for the therapy. And he was fitted for a mesh mask that he'll wear during each treatment. The mask protects his face and ensures that he'll be positioned in the exact same place each day so that the radiation will be directed exactly where the doctors want it to go. It's crucial that the X-rays hit the bad cells and, as much as possible, avoid the good tissue. There are many risks with the radiation -- his vision could get worse, he could lose his hearing -- but they are definitely worth the potential outcome.
We'll return Monday for a simulation and Tuesday for the first day of radiation therapy. His standing appointment will be 3 p.m. Monday through Friday for 28-31 days.
We also met Dr. M, the neuro-oncologist who will take care of Steve for many months to come.
She acknowledged that reaching a diagnosis has been messy and painful. She told us we'd never forget that pain and that she's eager to help us close that chapter. Now we start the next journey -- treatment. We both felt so encouraged by her candor, optimism and attitude.
She will oversee the chemotherapy and its effects. Steve will start taking Temodar next Tuesday night, a few hours after his first radiation treatment. He'll stay on that oral chemo for the duration of the radiation, every day including weekends. The day he stops radiation, he stops the Temodar.
Then he'll take a short break before starting monthly cycles of Temodar -- probably a week every 28 days for 12 months.
We're in for some rough weeks, we know. But Steve shows no signs of fear of the fatigue, potential increase in current symptoms, potential for new symptoms, possible nausea. We only wish we could start killing those rogue cells today!