6:30am is not one of my scheduled times for a dose of Ativan. The short-acting benzodiazepine is a go-to drug used to alleviate everything from anxiety to nausea to insomnia in cancer patients. I suppose I am in need of all three right this moment.
I had my 3rd-ever CyberKnife session yesterday. The neurosurgeon was running late, which meant an extra hour in the waiting room while he and my radiation oncologist put the finishing touches on the plans to zap three growing brain tumors.
Two were to be dosed that day and one next Tuesday. The treatment went off without a hitch. The head cup was a little more comfortable this time, and after 55 minutes of being strapped to a hard table by my face, I was free.
The next step was to meet with the doctor before heading home.
He was available immediately. We sat down and asked a few follow-up questions. I wanted to confirm that we could keep zapping little pop-up tumors based on where they were, which CyberKnife “fields” are were still available for use, etc.
But at one point he just interrupted with “I have some news.”
I didn’t feel the room get cold. There was no tingling that ran up my spine or goosebumps on my arms. I just sat, perfectly still, and waited for the approaching semi to hit me.
He explained how he and the neurosurgeon reviewed all my scans in as much detail as possible: the ones done to match the precise CyberKnife machine calibration, with the newest software program. And they had a few recommendations.
First, they discovered other tumors (ones thought to have not grown or have previously only been identified as “lint”) they would like to treat, as well. FIVE of them.
It took Seth and I a minute to comprehend the simple arithmetic. “So you want to go from 3 total to 8 total?” I said at one point.
So we talked it through, and the idea of waiting to see if they would suddenly stop growing (for no reason) just seemed absurd. I was already scheduled for another session, I have my mask already made, I might as well deal with them now.
In my case it takes 25-30 minutes per brain tumor. So on Tuesday and another day TBD I will lock-in for long, 90-minute sessions of CyberKnife once more.
Still, I’ve tried to think of this as a positive thing: treat them now and not later. But the news didn’t end, and I sensed the semi was gaining speed.
The two doctors didn’t feel that I received any benefit at all from whole brain radiation (WBR). (More on that soul-crusher later.) So their final recommendation to me and my primary oncologist is to begin chemotherapy immediately after my third CyberKnife session.
The runaway truck hit me, and as I sat positioned between the doctor and Seth I could only hope I was shielding him as much as possible from the impact.
My headed flooded. I was expecting a normal “everything went well – see you on Tuesday” conversation and handshake. Instead I was getting version 2.0 of shitty scan results.
We talked for a few more moments. When I asked if he thought he could still get my doctor on the phone, he said, “I think I can.” It was already 4pm, and I knew if he could get Dr. Roush on the phone, I would get a callback from Dr. Roush before the weekend.
Briefly, I recapped our agreed-upon next steps: a) we will zap the remaining SIX spots during 2 sessions, b) one is already scheduled for Tuesday, and c) the name of the person who would be calling to schedule the third.
I told him I would need to think about anything past that, talk to Dr. Roush, maybe others, and thanked him for his time and candidness. Somehow Seth and I found our way to the car, then home.
Dr. Roush called from his cell phone around 5:30pm – much earlier than I anticipated. I quickly placed him on speakerphone.
He was “very disappointed” by the follow-up news from the neurosurgeon and radiation oncologist. We talked only briefly about the success of WBR: he still holds that there was partial benefit – maybe that’s just him wanting with all his might to think we didn’t fry my brain for nothing. (Thinking about that is a vomit-inducing post unto itself.)
Moving on, he agreed that I (generally) have nothing to lose by zapping the five new spots discussed that day. (I say generally because all of this treatment has risk, of course.)
We spent the remainder of the conversation discussing chemo. Was Camptosar still his drug of choice? Yes. What are the other drug options? He explained. Why not them? He explained. What would your colleagues say? He talked though various scenarios, why the other drugs would be a lot riskier, etc, and at the end of it all I felt good that he had done and will continue to do all research, reading, and discussion with anyone he needed to make sure I get the best treatment. He’s not going to cure my cancer – no one is.
Once I know the date of my third CyberKnife session, I’m to call his office to schedule the visit and chemo infusion. Camptosar is administered weekly and tends to be gentle as chemotherapies go. (Hopefully I’m in that majority this time.) I didn’t ask how long I might benefit from Camptosar or what is next when it stops working (if it works to begin). I didn’t have the heart or the stomach to hear those answers. Not yet.
After a pause, I finally did ask him if we can delay chemo until November. He told me he would work around whatever I have scheduled, but no, we should begin right away. (I purchased our plane tickets to the NASCAR race just the night before. Had I waited another 24 hours, my decision would have been different.)
So, you’re up to speed now – less than 24 hours since it all began. I feel particularly horrible about the whole thing. Problem is, I’m not sure how much of it is feeling my impending and escalating timeline to death -or- just feeling crappy from being bombarded with so much radiation.
I certainly don’t remember feeling so sad and scared after my last CyberKnife treatment.