Though the days go by fairly quickly for me, time seems to be going slowly. I feel it should be Day 10 due to anticipation but it is only the end of Day 5.
Ashtyn woke up with more mouth and throat pain than the day before. They increased her continuous morphine from .6 mg to .8 mg an hour. Each time she pushes the button the PCA pump gives her an additional .8 mg of morphine. Her pain is definitely being controlled and the mucositis isn’t nearly as severe as it was in February. Just a few more days before the mucositis will cease to get worse. “It’s mostly painful when I swallow and talk.”
Her foot pain was less than normal during the day and afternoon. I credit that to prayers from others. By 7 p.m. she was a busy bee doing all she could to ease the pain. Going back and forth between foot soaks, cloth wraps, rubbing with lotion, holding with light pressure, and tickling. It is now 2 a.m.. The nurse is at the beside assisting with ice packs and trying to think of other ideas that might help.
I obviously don’t know how Ashtyn is feeling. I don’t know what it feels like to have gone over four months with a constant toll being put on the body with countless medications, chemotherapy drugs, and radiation. I don’t know how it feels to have my entire bone marrow, which is necessary for life, obliterated. I don’t know what it feels like to have the physical, emotional, and mental stress that she has had. The only thing I know is what I see. Ashtyn has grace. She is very polite and pleasant to be around. However she has struggled several times in the last couple of days with anxiety, something she has never experienced prior to cancer. When Ethan and Morgan came to visit her for movie night she had a moment of feeling overwhelmed and became very anxious with the increase in commotion. Yesterday her dad came for a quick visit. He started to rub her feet but soon stopped to do something else. Ashtyn was annoyed because she was enjoying the foot massage. The disappointment was too much for her to cope with and again she became very anxious. After she calmed down, Jason left. A few minutes after he left, her Grandma and Grandpa came to visit. She again was overwhelmed with the unexpected visit and stimuli. She could hardly keep her composure as anxiety peaked. When she is anxious she becomes frustrated, annoyed, and very tearful.
Just moments after Ashtyn’s grandparents left, a new friend of mine, Lisy, knocked on the door to say hi. She is a mom of two children that have had bone marrow transplants and her daughter was in the hospital for a fever. I do not believe it was random that Lisy came to Ashtyn’s room at the time she did. It was the perfect moment for me to voice my concerns to a mom who has “been there done that.” We talked in the hall and I told her about Ashtyn’s anxiety. She reminded me that Ashtyn is maxed out and sensory overloaded right now. She is in survival mode with everything she has to deal with physically and emotionally. Ashtyn can handle being in the hospital day after day, but can’t handle the loud sounds of Ethan shooting a Nerf gun. She can handle her entire body feeling yucky but can’t handle the annoyance of her dad stopping her foot massage prematurely. She can handle the mouth, throat, and foot pain but can’t handle an unexpected visitor and surprise questions. Lisy told me exactly what I already knew, but isn’t it nice to be validated sometimes? I have learned the importance of involving people in the details of my life. Why would I want to walk through my struggles alone when so many people have gifts and talents that can help lighten my load and build me up?
For both Ashtyn and I, our spiritual strength is the only reason we have physical and emotional strength. Ashtyn is handling her struggles with faith, trust, patience, and hope. She has faith that God is watching out for her and that He is involved in the details of her life. She has trust that He won’t give her more than she can handle. She has patience knowing that this struggle won’t last forever. She has hope that in the end everything will be worth it because of the things she is learning, the positive experiences she has had, and the strength gained that will benefit her entire life.
Have you ever wondered, “Why does Ashtyn have to go through this?” “Why does it have to be so difficult?” “What is the purpose?” Do you ever ask that about your own life?
I found this quote that, for me, answers those questions:
“As we ask these questions, we realize that the purpose of our life on earth is to grow, develop, and be strengthened through our own experiences. How do we do this? The scriptures give us an answer in one simple phrase: we “wait upon the Lord.” Tests and trials are given to all of us. These mortal challenges allow us and our Heavenly Father to see whether we will exercise our agency to follow His Son. He already knows, and we have the opportunity to learn, that no matter how difficult our circumstances, “all these things shall [be for our] experience, and [our] good.” Elder Robert D. Hales
Ashtyn’s view for awhile
My view from a chair