I’ve sat down in front of my computer a whole handful of times lately to write an update, a new poem, something…but haven’t quite found the words until now.
2018 has been full of adventure already and I truly feel more normal than I have since surgery last July, but on January 10th I started noticing a bit of numbness ad tingling in my right thumb. Since I’ve had my share of chiropractic visits over the last 10 years or so and my neck has been known to get out of alignment and cause headaches, it didn’t worry me too much. But then over the next few weeks it started to spread…it spread to my other fingers, to my palm, my arm, my shoulder, my tummy, and my leg. And in that super scary moment that I woke up and realized nearly my entire right side didn’t feel right, I decided it might be time to tell my doctors.
Needless to say the last few month have been filled with doctor’s appointments. I’ve met with my PCP, radiation oncologist, a neuro oncologist, and a neurologist. I’ve had 3 massages in hopes of relief, given 10 vials of blood for labs, had a cervical spine MRI, nerve conduction testing, EMG testing (which is basically needles being stabbed deep into your muscles and then being asked to move those muscles to make sure they work), and in the next few weeks I’ll have a brain MRI, an eye exam, and 2 more appointments. And from all that, we still don’t really have a ton of answers.
But one thing we do know is…it’s not cancer. And that’s more than enough to celebrate.
The cervical spine MRI did however show that I have a 9mm spot of inflammation in my spinal cord between C1 and C2 that is slightly more to the right, which would explain my right side/arm symptoms. But we’re not 100% sure what the cause is.
It could very well be a late effect from radiation, but those type of neurological issues don’t normally show up until 6 months or so post treatment (I’m about 4 months out) and my spine got a very safe dose of radiation (30gy). Let’s be real though, NOTHING about this entire situation has been normal.
The other things being considered are things like MS and any kind of autoimmune disorder. That’s mainly why I’ll have another brain MRI (even though I just had a super clean one 12/27), why I’ll have a neuro eye exam, and why they’ve drawn so much blood. These tests give them some insight on anything else that could be going on that checks out for either of these diseases. I’m personally hoping and praying it’s radiation related which will go away on its own.
The best news in all of this is that no one is panicking. I still have my strength and I can still feel things like hot, cold, pressure, etc. so this honestly hasn’t caused me more than a bit of anxiety, annoyance, and the occasional drop of something from my right hand. Typing is weird, writing with a pen is questionable, and I’ve gotten really good at eating and putting on makeup with my left hand.
But while all of this as been so very frustrating, I’ve seen God’s grace and mercy more and more. I’ve seen even more first hand what a good, good father He is and how He cares for His children in so many different ways. And my goodness the peace that comes with that. It’s so easy to think about all I’ve already gone though and be angry that something else has come up, but I’m healed and I have a story that no one else but me gets to tell and this trial will only add to that. What a gift!
Have I been angry about this the last two months? Angry to tears and miserable because I felt like the devil was trying to steal the thing I love to do most…write. But no matter how many times I have to backspace or how long it takes me, I’m going to use BOTH of the hands God gave me to tell the world my story.
Have I had my share of words with God? I have more times than not, and then I pulled a David and ended up praising Him by the end because this isn’t cancer and He’s given me that assurance knowing how desperately I needed it. If I’m truly honest, I was most nervous that this situation was going to be something terrible and hold us back from becoming parents someday, but Lord willing there will be baby Powells someday. Rest assured.
So what’s next? March will be the brain MRI, PCP follow up, and neuro oncologist followup (don’t let the oncologist part fool you. She’s just used to treating post-treatment patients and she came highly recommended to us). April will be back to normal programming and include my second set of scans (out of 4 for the year) and a checkup with my radiation oncologist. Then I will hopefully have May off and then June is my checkup with my ENT. (Checkups are every 2 months for this year and swap between my radiation oncologist and my ENT).
Lastly, we will humbly and thankfully accept your prayers through this year (and the next) as we go through all these appointments, scans, and continue on this emotional ride. It’s been hard but we’ve grown more, loved better, and lived harder and that matters a lot to us.
Onward and upward! It’s going to be a beautiful year!