It's similar to someone who has spent her/his whole life playing chess. You've learned the rules, the various strategies, attacks and defenses, etc. You derive great pleasure out of playing with various opponents and the accompanying banter. You lose as much as you win, but that's all in the game.
Then you wake up one morning and the rook has been mysteriously replaced with a toilet paper role. That's OK, after all you can figure out what to do with it. Each day though another piece gets replaced, until eventually all the original pieces are gone, replaced by random odds and ends. Some have disappeared completely.
It takes just about all the concentration you can muster to keep track of what the pieces might be. Then the board itself changes to a circle that occasionally spins. The rules continue to change as well, sometimes several at the same time, sometimes reverting to the norm. Your opponents don't see any changes; everything has remained the same for them. They can understand that something has changed for you, but are unable to see it for themselves.
So how have the rules changed? In no particular order:
- acid relux
- hurting gums
- nausea (still not sure if that's the right word for it.)
- hellish hiccups (worst side effect by far)
- gas
- fatigue
- physical weakness
- crazy cravings for fat and salt
- sweet things no longer sound appetizing
- tinnitus
- random digits going numb/twitching
- hair thinning (to use the doctor's words)
- variations in stool ;)
- slight memory loss
- a port in my chest
- 4 inch scar in the groin
- numbness on the inside of sensitive body parts
- oh yeah, and missing a testicle!
All of these aren't present all the time and usually by the end of my two weeks off, most (but clearly not all!) have disappeared. So there you have it. All in all I can't complain because we are beating this thing and it could be so much worse. But just because it could be worse, doesn't make it a picnic either.
Christian, I am in constant awe of you. You inspire. I really appreciate you updating your blog and sharing your quest. Trooper and read it in the evening time together. We think of you and your family often. Monster-big-holding-on-till-it-is-almost-awkward-hugs being sent your way! We love you. Trixie says "Hi" Trooper and I are rooting you on. ((waving))
ReplyDeleteYour analogy certainly hits the mark. Throughout this experience, you have said - "It's nausea but that's not the right word" and you have struggled to find the words to describe your experience even to me. Maybe only Connie and Ed, Karen and Mike can really understand from a married point of you. Love you!
ReplyDeleteIt is amazing to watch your journey. I appreciate your expression that even though it could be worse, it doesn't mean the experience is pleasant. Thank you for sharing your experiences with us. We love you and think of you often.
ReplyDeleteAshley
The picture of the random chess set is worth a thousand words! Great analogy. I'm sure it is something that one must experience to even come close to understanding.
ReplyDeleteChristian you are amazing both with words and with your positive attitude. I love the chess set picture...it does create a great analogy. I know that it is a "family journey" bu no one but you can really appreciate the fight but you. In spite of all the downs, you still make some incredible chocolates. we love you
ReplyDeleteWhat is a port in your chest? and what is it for?
ReplyDeleteScott
It is humbling for me to consider all of the symptoms and side effects you are dealing with. I have heard Trevor moan and groan over the occasional case of mild acid reflux. But to deal with it on a regular basis, and in combination with other symptoms?? You are a strong man. and though you don't have much choice in the matter, I am proud of you for being the strong man that you are.
ReplyDeleteThis post makes me realize just how selfish I can be. I enjoy good health most of the time and only occasionally do I fall ill. If my illness lasts more than three days I feel like a real victim. Yet, there are remarkable people, like you, that are suffering most days and rejoice in the occasional 'good day'. Thank you for reminding me to be grateful.
Christian,
ReplyDeleteI love the photo and analogy of the random chess game because it puzzles me...and I think that is the point. As hard as I concentrate on playing that game, in my own imagination I am still pretty good but I know that would not be how reality played out. We try to imagine your physical anguish while we still enjoy full emotional stability. In reality, attacking this thing from a physically and emotionally drained perspective is beyond my comprehension! You're my hero. Whether your positivity is real on the inside or forced for you and our sakes, it makes you even more admirable that you are able to maintain the course through this battle. We love you!
Annie and Ty and Family