There Are No Words: 2016.08.15
Energy Budget Estimate: 2015 – 85¢; 2016 – 60¢
2015.08.15 Saturday: On the Other Hand
On this day last year I tried to explain a lot about the messy physical and emotional realities of recovering from my trache.
If you're new to these posts and comments, this one may seem pretty dire. It isn't. Having an aggressive throat cancer has unpleasant consequences. I don't dwell on them, but if I'm going to share this experience, well, this is part of the experience.
#1 Complaint: Gagging (no spoon required)
My gag reflex was strong already. With my throat closing in on itself I can start gagging over nothing at all. This can lead to serious heaving and near vomiting. Since aspirating vomit is astoundingly bad, I have become quite good at locking down and holding it in. Of all the crap I'm going through, this one is the nastiest.
#2 Complaint: Less Stamina.
I'm physically strong but some things that were easy even a few weeks ago want a pause to recover now. A lot of that has to do with having an impaired airway, of course. The goo builds up fast, and climbing a few flights of stairs a few times to move a 10kg nebulizer - well that takes some effort.
#3 Complaint: Pain and Discomfort.
Most of the time I'm not in a lot of pain, but then, most of the time I'm on pain medication. Yesterday J. (my SLP) noted that I hadn't asked at all about post op pain. She said that was common; people in my situation are often in enough pain that the surgery is an enormous relief. For me the overall discomfort is much worse than the pain itself. Not being able to lie flat for any length of time means no cuddling with my sweetheart. A need for humidified air means wearing damp cloths and hauling around bulky machines. Talking leads to coughing - not because of mucus, but because I'm using a tumor to make the sound vibrations, and that makes it itch with an all consuming intensity. Honestly, I can not articulate the power of that itch. Everything else in the world is just gone. For example, yesterday I had a bout of itching while at the kitchen sink. After wracking coughs and suppressing the vomiting, I realized that my feet were not on the floor. My hands were on the counter and I had pushed myself up off the floor for who knows how long, and hadn't even noticed.
#4 Complaint: Good Deeds vs. Prayers and Positive Energy
First, let me be clear that I truly appreciate the outpouring of support and care from so many. By showing you care you have caused an empirical difference to my mental and physical health. When I thank you for your well wishes, I am honoured and humbled and grateful, and I mean those thanks.
So my last complaint about this ridiculously disruptive and uncomfortable disease may seem petty, or like I'm dismissing or discounting you, but that isn't the complaint at all.
My complaint is that there is something else each of you can do to affect my mental health directly, and it is vastly more powerful than prayer or positive energy:
Do a good deed and tell us about it.
In the last few weeks, you have:
- stayed up to rock your child to sleep in your arms, instead of settling her down and going back to bed;
- had a tickle fight with your kids, despite hating being tickled, until you were all collapsed in laughter and love;
- set out to raise money for cancer research, spreading the word and making a difference;
- told someone the words you would say if they were the last words you could ever say to them;
- left food in our fridge while we were out;
- shared your story with people who can learn from it and gain hope.
When you turn your good wishes into a a real expression of love and caring, I call that a good deed. Those buoy my spirits up so high my eyes water and my grin can't quit.
I guess what I'm saying is pray, and send the energy, and think of me and my family. And then go do something good for someone just because it's good and it's someone.
Being at Livé’s soccer is making me feel a little better, but I am very anxious about tomorrow. At 0845 I will meet my radiation oncologist to review the results of my CT scan. I’m pre-embarrassed to tell Dr. Lee that I only got back in my Synthroid a week ago.
Sometimes being human sucks.
Not a lot more to say.