Seth and I sat in the exam room, cried, and tried to comfort each other while my radiation oncologist confirmed my next treatment with Dr. Roush. It’s an extra call he didn’t have to make; but he offered so I would be assured that whole brain radiation (WBR) was the right course of action.
The scan result was a real let down; if it was a test, I got a D, maybe a D minus. I had prepared myself for the most probable case: unresolved brain lint. That would have led to one month of chemo, which may have fixed it.
Instead, the scan showed 5 new tumors which developed in the past month. It was devastating news. Absolutely devastating.
Now I’ll spin it for you like I did for my mom’s sake. (Please know she is forbidden from reading this blog and understands/respects that. I ask that you do the same should you discuss anything with her.) My mom knows that there was an increase in “brain lint” and that I have to undergo WBR. With everything she’s been through lately, I just didn’t have the heart to tell her that the “new things” are actually tumors. I will tell her once WBR has annihilated them!
The reason I gave myself a D and not an F on the scan is because some of my original five tumors shrank a little after being treated with the CyberKnife. The change in the others was unmeasurable, but CyberKnife radiation continues to work months after treatment. I consider this good news, as it means my tumors have responded to radiation.
I begin whole brain radiation next week. The total amount of radiation will be standard for my situation, but I will receive it in smaller doses over more days than is standard. (This will theoretically reduce day-to-day side effects as it allows my body to heal from a smaller dose each day.) I’m expecting 15 days of WBR: Monday through Friday for 3 weeks. Each session will last about 10 minutes, and I will likely lose all of my hair towards the middle or end of the process.
Some other likely, immediate side effects are nausea and vomiting, although I will take small doses of steroids on treatment days to minimize these. AUGH… More steroids. I’m told the tiny dose of dexamethasone (1 mg) will be a cake walk compared to the daily 12 mg I had post-seizure. I hope that’s true; having a fat head and no hair would be hideous. Other likely side effects include redness and sensitivity (similar to a sunburn) on my head and ears.
Long-term side effects pop-up over months and years and vary from patient to patient, so I’m trying not to focus on something that may not apply to me. If you’re curious, I’m sure the Internet can satiate your desire for knowledge. If nothing else, I know youth is on my side.
The next topic sent me over the edge. After I finish WBR, the plan is to start chemotherapy. I lost my composure and started sobbing aloud. Dr. Lamond began to back-peddle and explained that the plan might change. “We’ll just take it one step at a time,” he said. Between tears and gasps for breath I tried to explain how this last month (with no treatment) has been wonderful, despite the frequent headaches.
Yesterday was awful, indeed. In fact, much of the last week really sucked. This Thursday we meet with Dr. Lamond again to prepare for WBR. I need to sign consent forms, have a new mask made, have x-rays taken, and schedule my sessions.
I’m not ready for this. I thought I would have another two or three months before I needed WBR. But once again, my cancer is an overachiever. Everything seems more aggressive than is normal.
Seth asked for a prognosis, but, of course, there was no clear answer. Dr. Lamond explained that after WBR we would use CyberKnife to treat any new tumors. He also said it is key to do WBR while the tumors are small. Trying chemo first may allow them to grow to a size where a lot more radiation would be required to get rid of them. It is much more likely that everything will be wiped out if we do WBR now. That’s why I’m moving forward with this plan.
When I know my treatment schedule, I’ll share it here. Until then I’ll try to stave off the pop-up headaches, take many naps, and support my mom through the tough time she’s having too. It’s been a hell of a week, and something tells me a flip of the calendar will bring no relief.