For weeks the pressures of a feeding tube have been constantly suffocating us. It is no surprise that with such a big tumor squishing his innards and chemo that makes everyone nauseous, Caden was bound to lose weight. While I do not like that my son is now 'moderately' malnourished, there are so many factors that I can't stop- no matter how much I wish I could. I know that he needs nourishment to be healthy. I know that he needs to be healthy to recover quickly from surgery. I know he would feel better if he had more to eat. I know that he would feel better if he could keep more fluids down. I know that everything would be so much better if he had this, and this, and this, and this! I KNOW! That doesn't change the fact that everything that has passed through his lips this last week has come right back up. With each wretch, each moment that Caden became lighter and lighter and lighter, the mountain of suffocating stress got heavier and heavier and heavier. Knowing the reasons does not make any of this easier.
Many have asked why the feeding tube is the worst thing about cancer care for us. I hope I am able to give adequate description so you can fully understand why today ended the way it did, with the feelings that it has given us.
One time I had to have my nose swabbed for the flu. She stuck the cotton-tipped stick up my nose, and, I swear to you, dug to the very center of my brain. No lie. I couldn't believe it hurt as much as it did- and it only lasted 2 seconds, although it felt like a year. In fact, I got a pretty bad nose bleed from it. Now, imagine someone coming with a four foot, hard plastic tube, and shoving it up your nose with enough force that it will bend itself down the back of you nose, down your throat, and eventually have enough tubing to coil in your stomach. Now do that 50 times. Try having it placed three times in one night, all the while feeling like death from chemo and violent, wracking vomiting that shoots the hard plastic tubing out of either your mouth or your nose- one of which was seriously seconds after your wretching had stopped, but not before your mom was able to finish wiping the vomit from your parched, cracked lips. Never being able to really say no, because we all KNOW that we need nourishment. It hurts enough to have grown men cry. It hurts no matter how many times you've had it placed. In fact, it hurts more the more you do have it placed. That, that is why we don't want it again. Because, with this week of "easy" chemo that had him throwing up twice every day, at least, what do we expect will happen with five days of intense chemo? He would throw that tube up at least once a day until surgery. At least. Though we are glad we don't have six Rounds of chemo before surgery, we still have 21 days. 21 feeding tube placements would be torture enough. Add on his track record of twice a day...well, you can imagine. It doesn't even need to be said how hard it would be to even eat with the tube down your throat.
Randy and I went on a date this weekend. He took me to the movie based off of my favorite Nicholas Sparks book, The Choice. I ruined that book with my snot and tears, I tell you. Pages were welded together, never to be opened or read again. Looking back, I probably shouldn't have taken Randy. Where it was compartmentalized as a choice that was hard to make for a spouse, Randy saw it as a choice to take someone you love off of life support. I felt like a jerk. I never thought of it that way, I just wanted to see how closely it followed the book, and how well the characters were brought to life. Anyway, Randy came home with a new outlook on 'choice' and on cancer. He walked up to Caden's room and asked him what choices he wanted to make concerning his life.
"Dad, I do not want that feeding tube ever again. No matter what, nothing is worth the suffering it causes me."
As we sat by his bed, watching the tears fall on his sunken cheeks, we all came together with unity. Our little Caden melted into his bed with relief when we told him we would support him 100% in his refusal of the feeding tube. In that moment, we realized what cancer (and the threat of that stupid feeding tube) has done to our son's mind. He has had more pressing on him than I can ever imagine. And my weight felt like a lot. He is so tired- physically and emotionally.
With the brevity of this decision, Randy knew he needed to be with me. I can be resolved in my decision to say no, but the moment they tell me something that strikes fear into my heart, I tend to sway pretty easily. With this, I knew that I could not be swayed. In all else, I need Caden to feel safe and secure with me, since nothing else about his world is. Especially when I give my word. Randy made a call, telling his boss, Craig, what was happening- today was a big day, one that has been on the schedule for months before cancer care- and Craig took over for Randy. Craig, if you ever read this, please know what a blessing you are to me. I could not have made it through our appointment today without him. It was so much harder than I ever thought it would be. I needed him by my side, holding my hand. Thank you for letting Randy's mind be put to rest about the demo, so he could say the words that needed to be said to Sue and the Nutrition team, without distraction.
Caden's weight was 42.1kd today. It was actually better than we thought it would be, since Caden had been weighing himself multiple times this week. But that didn't stop Nutrition from stopping by. In the meeting, Sue and Nutrition (I refuse to learn her name, because of the 'evil' she represents, although I'm sure she is a nice lady) pressed upon us the necessity of nutrition for Caden's body for the massive surgery he would have. Like we could forget. Like we didn't already know. I wanted to scream at them that they could just stop talking, I already know- and I agree- that he needs nourishment. I just don't think that the feeding tube is the best option for that to happen if he is going to be throwing it up! Anyway, by the time that Nutrition left, there was plans for her to check back with us tomorrow (while he was getting more intense chemo) about placing it then- as long as he didn't throw up tonight. Like- 'Hey, glad you're not barfing. Now we can place the feeding tube, because it doesn't look like you'll barf as much. Isn't that great?! Hope this lasts! Fingers crossed. Haha.' The pressure boiled over. I could not control the tears a moment longer. They weren't hearing me. The choice was being taken from all of us. And the feeding tube was not going to be placed in my nose.
Sue came back to our room after her next patient. She sat down in the chair next to mine, looked me in the eye, and asked me how our week had really gone.
"Sue, Caden has thrown up at least twice every single day no matter what we do. Some times, he even threw up without even feeling nauseous. It was just a projectile surprise. He ate as much as he could, even while feeling nauseous, and then would weigh himself after each wretch, knowing that all he was doing was never going to be enough. He cried after each session, not from the pain, but from the realization that he could not stop the feeding tube from coming. Nothing has been harder for him to handle that the thought of having to keep going through with that feeding tube!"
With each sentence, her face began to crumble. She could finally see just what I see- my Caden's mind was being broken. We were damaging a young boy by taking away the only thing he can control, the only choice he could make.
"Oh, no! NO! Stephanie, the pressure is off. No more talk of feeding tubes. I would prefer his body was stronger for the surgery, but he'll survive. I won't be here tomorrow, but I want to tell him on Friday. Have them get me the moment you get here. I want to tell him: The pressure is off."
Remember the snot and tears shed on my book, The Choice? They were nothing to the snot and tears I shed while she watched me try to regain my composure. Truly, it was about as un-lady-like and ugly as you can ever imagine.
I can fly!
We still have a lot of work to do. He will need to continue to get as many calories into his body as he can, but we no longer have a mountain on our shoulders. It will be hard each time he throws up (we know he will) but it doesn't feel as hopeless. We were given a Miracle today.
Words that soothed our hearts and set them free.
No comments:
Post a Comment