I spent Monday through Wednesday this week in St. Louis for follow-up appointments. Here’s what was on the schedule:
- Monday: First MRI following completion of my radiation therapy and chemo round one.
- Tuesday: Follow-up with neurosurgeon regarding my progress recovering from brain surgery
- Wednesday: Labs and appointments with my radiation oncologist and my medical oncologist.
The scan itself was mostly okay. I had a couple of freak-out moments, but it had nothing to do with claustrophobia or scanxiety.
It was more PTSD-like in that the unmistakable clicking and buzzing sounds of the MRI machine sent me back to the early days of diagnosis and ER life.
A couple of tears might have rolled out the corners of my eyes. In all, I spent about 45 minutes inside the machine, nearly falling asleep toward the end.
The MRI Results
My doctors were all on the same page about the results—pleased that the MRI showed the brain tumor was “stabilized.” Meaning things weren’t worse. My radiation oncologist was the most excited, telling me “Congratulations!”
I should probably be happier about this than I am, but if I’m totally honest I am not overjoyed about “stabilized.” As a patient, you kind of want to hear something like, “It’s half the size it once was. Your progress defies the odds!”
Know what I mean? I already knew the damn thing was slow-growing when they guessed I’d been carrying it around in my head for years.
I was confident it wasn’t going to double in size since February. I also thought going through two months of awful surgery, diagnostic procedures, and cancer treatment was going to get me something more than “it hasn’t gotten any bigger.” You know?
Not that I’m ungrateful. Just an overachiever, I guess.
I start what we’re calling my maintenance chemo schedule as soon as I get the drugs. It’s a 28-day cycle where I take my chemo pill, Temodar, in the morning for 5 consecutive days, and then I have 23 days off. Next month, I do the same thing and so on.
Even though it’s just for 5 days at a time, I’m still a little concerned about how I’m going to handle things. The dosage (320 mg) is more than double the daily dosage I took earlier. The bold, underlined, all-caps text on my patient instruction page says:
DO NOT SKIP ZOFRAN BEFORE EACH DOSE OF MAINTENANCE TEMODAR EVEN IF YOU TOLERATED TEMODAR WELL DURING RADIATION.
So I’m guessing I might still need to keep my barf bags handy.
I don’t have another MRI for two months, but I do have to see my medical oncologist again next month. From here, the doctor appointments are becoming less and less frequent. I don’t see the neurosurgeon until September or the radiation oncologist until July.
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How long on the chemo for this round? Our son-in-law, another BT patient, just finished his last month. He was on it for a year. No significant improvement with the paralysis since the small stroke, during his second brain tumor surgery removal. I think I pretty much understand what you are saying about the ‘results’. I feel the same way when the reports come back on Joe’s results that say the ‘suspicious’ areas are not increasing….until they did and we had the second brain cancer diagnosis and treatment.
So, here we are again, waiting……and really happy about the ‘no change’ reports now. The second surgery and additional complications it brought to his life and our daughters life changed my thinking a little on the ‘no change’.
You are doing amazing!! I cry almost every day reading your updates and facebook. They are inspiring.
The chemo this time will last 6 months to a year — depending what they see on subsequent MRIs. Of course, I’m hoping that 6 months will be enough, but only time will tell. Thanks for following my progress as I type into the void, Tina. <3 you.
Do they expect it to shrink, or are they just wanting to keep it the same size?
No doctor has ever said the word “shrink” to me. Pretty sure it’s just an unreasonable expectation that I have for myself.
Congratulations are in order! The brakes have been put on!
All the very best with your latest treatment Emily, you are one strong young lady.
Thank you! <3