Chapter 17: This is my fight song, take-back-my-life song…

98.6, 78, 10000

I love numbers. I have trouble remembering names after I meet someone for the first time (though I always remember a face), but numbers—I can go far with them. My first Top 16 time? 36.44 in 10 & Under girls 50 meter backstroke. First Junior National cut? 4:32.62 in the 400 yard IM. While swimming up and down along a black line for hours on end, 9 practices per week, 52 weeks per year—you start to play numbers games in your head. Swimming sets and laps can be put together in all sorts of permutations and combinations. Maybe that’s why my math SAT was so strong.

So when you’ve become a perpetual patient, numbers start to define how you feel and what decisions you or someone else makes for you. From mid-May until last week, I ran a fever. About 24 hours after I started taking my crazy chemo drug (Crizotinib) last week, the fever started to dissipate. I thought it was just one of those “non-fever spells” I would occasionally and luckily experience every now and then when my white blood cells would take a little vacation. But the numbers started to drop and stay there. One day I checked at a time of day it had “historically” been 101 or higher and it was 98.6 on the nose (who said perfectionism was a bad thing?). It seemed surreal and kind of magical.

Then I noticed I started to feel less jittery and less tired. My resting heart rate went from 110-120 beats/minute on average to 105, then 100, then 90…then one day it was 78. What!? My energy levels began to rise every so slightly. I could master a flight of stairs without getting to the top and racing for the nearest seat in need of a break.

Finally.

With increased energy came increased motivation. I started to feel like myself, the athlete. At the start of the week last week, I made a pact with myself that as long as the weather was nice and not miserable (hello, fall in Georgia!), I had to go outside and walk. A “walk” could be 5 minutes up and down the sidewalk. So I did that. Up and down the sidewalk and around the flat/level part of the driveway for a few days. Thanks to my Garmin VivoFit (like a FitBit, but better, for those of you who aren’t familiar), I had numbers to help motivate me.

On Monday Daniel and I went to the park. 4500 steps that day. Little hills were a bit tiring and I needed a break from them. Tuesday it was about 40 laps around the driveway, front yard, and front sidewalk of the house. 5500 steps. Wednesday: same tune but more laps. 6500. Thursday I ventured up and down the driveway hill in addition to my little front yard “track.” 7800. Friday we went up to our cabin in Blue Ridge and I added bigger hills and more “rugged” terrain (unpaved road and driveway). 8200. Saturday and Sunday I took a “break” at 6000 steps each. And today I took a walk around the hilly neighborhood with my mom (it was EASY!) and also walked up and down our backyard deck path while on a phone call (pacing at it’s best) and I’m currently sitting at 10178 steps. WHOA!

Six months ago this many steps would have been no problem. A year ago I walked 35000 steps in the Bay Area in one day with my friend Kate and set a “personal record” (that’s about 16 miles for anyone counting) and felt like it was no big deal. As an athlete (who loves goals and numbers), it means so much to be able to track progress and see how far I’ve come and hit a “milestone.” Exactly 50 days ago today I fainted and went to the hospital in an ambulance. It’s safe to say I’ve made some strides since then!

Last week there was not a whole lot of medical news. No news is good news. I gave away more blood and had my “Baseline” CT scan complete with delicious radioactive barium sulfate milkshake prep the night before and morning of the scan. I’ve had 3 other CTs since June (along with PET scan, V/Q scan, and too many chest x-rays to count) but this one is the one we will compare all future scans to. This week I’ll see Dr. Grossman (functional med) to ask a million questions about how to manage side effects, diet, etc, followed by a PT appointment (sitting around for a few months will do a number on your body!) and a follow up with Dr. D’Amato (oncology) and giving away more blood. My anemia numbers (H/H and RBCs) were not so good 2 weeks ago so I’m hoping they’ve come up a bit.

With all the good stuff happening-I’m not out of the woods and still have to remind myself I have a long way to go. Rome wasn’t built in a day and neither was Wonder Woman. The medication is not without its somewhat unpleasant side effects which brings a whole new list of challenges. But-it’s empowering and exciting for the pendulum to swing toward feeling better instead of being kicked when I’m down. It’s hard not to tell myself “don’t get your hopes up” because we have no idea if the new medication is going to shrink the tumor or not, but I can’t help but think that it’s very peculiar that I am just a little over a week into the medication and I’m feeling MUCH better. Maybe a bit of that is mental. Ok, maybe a lot of it is mental. I’m a strong believer in mind over body!

Move over Benedict, because Wonder Woman (the math geek) is taking the stage.

Onward and upward! Off to Chapter 18

4 thoughts on “Chapter 17: This is my fight song, take-back-my-life song…

  1. Bless you!!! You are an incredible Wonder Woman!!!

  2. Ada Shields!!! Not “Sad Shields”!! 😊

  3. Julie! That’s greeeeeaaaat news!!! I too am a believer in mind over body, but also a believer in using the tools you are given, like this new medicine you have. Together, meds and mind seem to be working magic! I am so happy to hear that you are getting some relief.
    I have a little something for you from Alaska–not edible–more like a “comfort” thing. Send me an email and let me know how to get it to you. If you want a walking companion some day, let me know. I have a Fitbit 🙂
    Ann

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