Oct 03, 2012 - 6:20 pm
This is my first post in a while, but I've still be visiting and checking in on folks. I don't have a good answer for why I didn't post anything for the past month or so. Sure, I've been busy but that didn't stop me before. I think part of it is that I've been figuring out what it means to be out of treatment, and how you live with what you went through. It changes you in ways I didn't really expect.
I was diagnosed with Stage VI SCC of the left tonsil and soft palate, strongly HPV positive (in every biopsy cell tested). I had 35 IMRT treatments and cisplatin chemo every week for 6 weeks (I missed one chemo). I got super sick from the narcotics and ended up with gastroparesis, which shut my stomach down and made me throw up anything I tried to eat for about 5 weeks. I had a PEG tube, and even so I lost 50 pounds during that period of time (I could afford the loss in terms of overall body weight, so it's not as bad as it sounds). Treatments ended June 1, and my first PET scan in August was all clear. Since then, I've had two check-ups with the scope that have also been clear. I had the PEG tube removed in mid-September.
My life is different now for sure: I have trouble swallowing (still) from inflammation, my taste is still messed up, anything remotely spicy burns when I try to eat it, I'm still tired a lot of the time, my skin itches like mad (curious to find out if that's a side effect from chemo?), I have pins-and-needles pain down both legs sometimes when I walk (also curious about whether it's chemo related), my jaw painfully tightens up every couple hours, and my mouth and throat are still very dry. I worry about my next scan and whether the cancer might come back. It doesn't take much anymore to make me cry. Even with all of that, I genuinely feel blessed and lucky.
All of those things, even when you list them out like that, are bumps in the road. I mean that honestly and with all my heart. To everyone in treatment now or just diagnosed: as time passes, you start feeling better, and the "new normal" is what you make of it. If I think about the amount of time in a day that any of these changes really matter, it's a total of maybe 30 minutes of my whole day. The remaining 23.5 hours of my day are pretty much the same as they were before, except I feel like I'm finally really awake to enjoy them. Don't doubt whether the treatments are worth it or dread what life will be like afterward. No one knows what you will experience during or after treatments, and no one knows how long a life he has, with or without cancer. Just focus on each day, each moment, and know that time will pass and you will get better.
I hope everyone riding the bus with me earlier this year is doing well--I've been thinking of you!