Note: I wrote this in December, 2014, when I was at the bottom of a pretty low low. I didn’t publish it then, but it was good for some catharsis. As I read it now, I’m in a much better place and prednisone is far, far away. Many of the things I wrote about have resolved, and that’s a great thing! Again, the body is an amazing creature capable of changing in amazing ways… By the way, Weepy Wendy is not welcome ever again. I do not like her.
As I move on along through this adventure, I find myself noticing things about my self, and my body, that frankly I hadn’t expected to note until I was in my seventies or eighties. Sure, the hot flashes they tell me is the tumor talking, but sheesh! Bright red and soaking wet in twenty seconds or less, and then freezing again. I never used to freeze!
My ankles, feet and legs are swollen and tight, but no one can tell me why, nor do they seem to care. So, they just stay swollen and tight.
My body frame has gotten smaller, never thought I’d see that before I was seventy, and much less bulky.
I HAVE NO STRENGTH. I was the strongest person I knew, and I was dang proud of it. The lifting and physical work of the fire department, and the training it took to continue to do the job well all worked to keep me strong and healthy. What the heck happened???? This past weekend I went up a flight of stairs and about coded.
I continue to manufacture about 1500cc of fluid out of my lungs daily. I know this because I drain them daily. I drink and drink and drink, and pee once a day. I’ll spare you the fun changes I’ve noted that most older folks note having to do with various stages of digestion. Let’s just say none of them are pleasant.
There is still a hand on the right side of my trachea and it’s pulling to the right, but I’m told not to worry about it. Since the right lung ain’t working anyway, it’s no real concern.
I itch! I itch so badly! This afternoon, I’m filing each of my fingernails down so I can’t injure myself anymore. Seems when I’m sleeping, I begin to scratch my arms and legs, unknown sources of itching, and then bleed all over my bedding. I’m not on any narcotics, so that’s not the source of the itch, but I’m tellin’ ya, I itch!
When I swallow I can feel something impinging on my esophagus. I don’t know if it’s inside my esophagus, or pressing in from the outside, but it’s a bit uncomfortable.
There are bright and shiny things at the periphery of my vision, especially at night. A common side effect of the crizotinib, at times they’re so vivid I duck out of the way.
For about the past 6 days, I have cried the entire time. I’ll start to cry as I’m driving down the road, sitting down to eat, or beginning to talk to someone. I’ll be walking down the aisles of the market, and I start to cry. Just outta the blue, tears flowing down my cheeks, face all scrunched up and icky looking. Weepy Wendy’s come out to play. I do not like Weepy Wendy. I’m hoping she was invited by the prednisone, and will be kicked out on her keister soon. I do not like Weepy Wendy. Am I repeating myself???
My voice is gone. I’ve read the tumor can paralyze your vocal cords, so I don’t know if that’s the case, or it’s just that I have insufficient air volume to push through them. Either way, the sexy secretary voice is here to stay…
All of this and more amazes me. I’ve always tried to be aware of my body and what it can do. I was always excited to learn something new for it to do, to accomplish. Now I’m seeing my body do different things for different reasons, and it leaves me in awe. I hope it doesn’t seem like I’m complaining (okay, maybe just a little) about it. I’m just pretty struck on what you can ‘feel,’ what you can detect, if you stop and just be. It’s all pretty amazing…
Post Note: I wrote this in December, a not-good month for me. Please remember how much I have improved since beginning my care at City of Hope. My digestion is back to normal, swollen legs resolved, sexy secretary voice gone, hot flashes still here-dang it, lung fluid diminished, and NO MORE WEEPY WENDY. I did not like her, did I mention that? I no longer itch, thus I no longer bleed, my swallowing is back to normal and there is no more pulling sensation on my trachea. I am, essentially, back to whatever state I called normal, and resolve to stay there with my new magic mystery medication. I even am exercising again, and will begin a pulmonary rehab program soon.
So don’t let the words get you down. They just describe experiences I HAD, not am having, and are far in the past. I am a grateful, grateful kid, and know where I am in this crazy world. I send strong thoughts out to others so they have as good fortune as I.
Take care all, and have a fabulous weekend. Best fishes, and with love!