I was supposed to have an oncologist appointment at Carle yesterday, but I woke up about 6:30 am feeling absolutely miserable.
I didn’t have a fever and chalked it up to allergies. But I’m not ruling out that I caught something wheeling past the urgent care waiting area with my Rollator on my way to phlebotomy Tuesday morning.
I should have worn an N95, but went surgical because I scheduled labs as early as possible to avoid the cootie-havers. (My appointment was at 7:45 and urgent care doesn’t open until 8:00.)
But there were people waiting for the walk-in clinic to open. Lesson learned.
It took two sticks before my veins gave up the goods. After the phlebotomist rooted around in the crook of my right elbow for a bit, I said the magic word: “Ouch.”
Even if it doesn’t hurt all that much, phlebotomists have a Pavlovian response to signs of discomfort or pain.* It was clear to me that nothing was going to happen, so I put an end to the expedition. She snaped off the tourniquet apologetically and started tapping the left arm with her index finger.
When she couldn’t get a vein to even pop up there, she asked me if she could look at my hands. Luckily one on the back of my left hand looked eager, and she struck crimson right away. (Bonus! My messed up nerves don’t feel much in my left arm.)
The downside is they use a smaller gauge needle for drawing from the hand, and it felt an awkward eternity to get those vials filled. In addition to just generally having my fill of medical procedures, I’m terrible at small talk.
Finally she got what she needed and bandaged me up. “Aww,” I said, “at least I get a cute Band-Aid out of the deal!”
Lab results just posted this morning. Everything looks fine. My appointment with oncology is rescheduled for June 13.
I have updates on the remodeling at Mom’s but I’ll have to write about that later. I’ve been sitting upright too long.
*In stark contrast to doctors and nurses who feel it’s their professional duty to not give a flying rip when you say 7 out of 10.
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 MRI
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.
What’s Next
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.
The radiation treatments are giving me canker sores and burning the skin around my scar. I have lotion for the burns and all kinds of stuff for dry mouth, so I do get some relief. I’m diligent about avoiding thrush, which is a common complication on radiation. (I had it when I had my tonsils out years ago and it. was. horrendous.)
In other news, I’m 6 hours past today’s appointment and mom says she can still see waffling from my radiation mask. That sucker is so damn tight now.
Talked to the radiation oncologist about the swelling and my worsening headaches. He says one option to reduce the headaches is to double my steroid dose. Unfortunately, that would likely also up my swelling, which is not exactly detrimental to my health, but it is really uncomfortable and makes it hard to get around.
For now, I’m just going to keep on keeping on until it becomes abundantly clear that I need to up the steroids or find another option.
Adding a picture of some dude getting head radiation so you can kinda get a feel for what I do mon-fri, and how the mask works. It keeps me from moving and keeps them from accidentally zapping part of my brain stem, which I really, really need.
