Waiting & I'll Fly Away....

We then began nine weeks of chemo every Thursday. We were usually at the hospital from noon until 5 or 6 p.m. The actual chemo only took about 30 minutes, but the waiting, oh my goodness the Waiting. Wait to check in, wait to get his weight on the special wheelchair scale, wait to get a blood pressure, wait for a room, wait wait wait for a nurse to pick him and access his port, wait for the labs to come back, wait for the doctor to meet with you, wait for the chemo drugs to come up from pharmacy, and finally, tada! chemo.

At first, Mr. Triumph came to the appointments with me, but really! missing half a day of work just to wait and wait. I tried to go by myself, but then Ty would have a difficult time in the car and try to throw-up. He can't really throw-up because he's had a nissen surgery, but he still tries and it causes him to cough so hard that he can't catch his breath. It is very frightening when you're on the freeway and there's nothing you can do to help him. Because really, your hands should be on the wheel and your eyes should be on the road ahead. I needed a car partner.

My mom started coming with me to Ty's apointments when Mr. Triumph's workload picked up. Alot of things are a two-man job with Tyler and I was grateful for her help. We have really enjoyed talking and spending time together, even if it is six hours in a teeny-tiny (emphasis on teeny-tiny) exam room. I usually held Tyler for the entire appointment - realize that he is 14 years old, 5'2'' tall and 75 pounds, but he had such bad anxiety every time we came to the hospital that he would only calm down if I held him. I guess I'm lucky, not every 14 year old thinks it's cool to hug their mom.

In addition to the nausea, one of the worst side effects has been loss of appetite. Before chemo, Ty used to eat about 1/2 of a Marie Calendar's frozen dinner, a La Creme yogurt and some juice for a typical meal. Now he won't eat anything, it all has to go via g-tube (directly into his stomach).

In most doctors' offices, if you don't want to wait very long, it's wise to get the first appointment in the morning or the first one after lunch, but my mom and I realized that if we came at 2:30 pm instead of noon we still left at the same time. It was a lot easier to hold Ty for 2-3 hours than 4-5 hours. That is one tip if you are going through chemo. The nurses there are 9-5 and I'm sure they want to go home, so they pick things up a bit. Somehow, we were always the last ones to leave.

Tyler had intermittent CT scans, and all left us very frustrated. There were no signs that the tumor was responding, in fact it kept growing at an alarming rate. I recorded my feelings with this:

Chemo day tomorrow-
poor Ty
poor us
4 wasted hours
killing time
not cancer cells
if only.......

Tyler received his chemo port on December 8, and right before Christmas I was a mess. The weeping kind. The unable to sleep kind. And the snappish kind. I guess the reality of it (everything) began to sink in. He had received 3 chemo treatments and was feeling very nauseous and very tired. One Sunday, I had gospel music playing in the background and he broke out into laughter, gales of hysterical laughter. He was kicking and dancing in his bed - it was becoming a rare occurence as more and more often, he would just lay there and sleep or tear up. I was glad to see him so happy, and listened more closely to the music.

It was I'll Fly Away by Allison Krauss, and each word pierced my heart. It hit me that he was rejoicing in that day when he will again be able to run and walk. It may have been the lack of thyroid hormone, but it did me in. I have never weeped such wrenching, heartfelt sobs. I melted onto the floor and cried with the pain of a mother glimpsing the mortality of her child. I just couldn't bear to lose him. It was not a proud moment for me - to realize that I was human and there was nothing I could do.

There is a part of me that knows this is an experience from which I can learn so much, but there is also a part of me that mourns the difficulty of it and the suffering my son has to go through. I have dear friends who supported me (and continue to do so) by being there, listening to my grief and allowing me to come to peace with it. I am so grateful for wonderful family, friends, and neighbors. I am humbled by their outpourings of service.

I know that one day, Ty will "fly away," but it won't be before it's time. I strongly believe that he will be made whole and enjoy running, walking, and talking again when that day arrives. How can I mourn such a wonderful thing for him? I know that it's only because I will miss him then, but I will enjoy him thoroughly while he's here.