Ashtyn and I have different perspectives of time. We have been in the hospital for 27 days and it has gone by very fast for me. There is not a moment of boredom where I can kick up my feet and wonder what I should do with my time. There is always something to do. When Ashtyn was really sick her needs were the same whether it was day or night. I slept when the opportunity presented itself. We never had more than a couple of hours of sleep without an interruption of one kind or another. Days and nights were intermingled with sleep and activities. After so many nights of interrupted sleep and days of constant physical or mental tasks, I am tired. Very tired. I think I could curl up in bed and sleep for a couple of days, begging that no one interrupts my sleep.
Ashtyn shared her perspective of time today, “I’ve been in the hospital a long time. It seriously seems like a year. Every day goes by slow.”
Facing cancer means that you face physical and emotional challenges. The week Ashtyn was diagnosed with cancer, she felt and had to deal with emotions she had never had to conquer before. From my post “God’s Orchestra” on February 5th, I wrote: “Today was a day that she grieved. Grieved for losing the life she once knew. It was a day of sorrow for not being able to go home. It was a day of stress with all the medications, vital signs, medical talk, and being attached to an IV pole. It was a day of depression, not wanting to socialize. It was a day of frustration with not having control of anything.”
The two weeks following she became very sick from chemo. She had physical pain that she hadn’t faced before. She remembers the pain and not being able to speak or swallow. From the post “Relying on What I Know” I wrote, “Ashtyn is sick. Very sick. She can hardly talk. Can hardly open her eyes. Can hardly walk. Can hardly sleep comfortably. She can’t eat. Can’t drink. Can’t laugh. Can’t cry… Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.”
Now that Ashtyn is feeling physically better with each day, she has to again deal with more emotional struggles. Her temperature, heart rate, and respiratory rate are normal which gives her more of an ability to focus on the ramifications of cancer. Now that she isn’t on oxygen, throwing up, coughing up mucous, or having continual medical staff around her, she has the strength to contemplate every moment she is in a hospital bed. Now that her eyes are wide open and she isn’t sleeping all day, Ashtyn has the time to long for the life she once knew.
Last night I talked to her about shaving her head. The only hair remaining was a thin layer that seemed to be holding on for dear life. Obviously she needed to shave all her hair so when it grows back it will do so evenly. This week seemed to be the week to do it. I validated her feelings by letting her know that it was going to be very difficult. I suggested that instead of just having me and her dad there, that she invite a few family members to be by her side to support her in this milestone. At 9 pm we gathered together in her room. I got special permission to have more than two people at the bedside. She had her two uncles Jared and Casey, her two aunts Alisa and Kristi, her dad, and me there to get her through it. Though she had agreed with the plan several hours previously, she sat on the couch curled up in a ball, “I don’t want to do it.” She was holding on to the small amount of hair she had, not wanting to let it go. What would she be letting go of if she let go of the remainder of her hair? Maybe the last bit of hope that she wouldn’t actually have to be bald. Maybe the last amount of hope that she doesn’t really have cancer but instead has a bad case of mono. Maybe it is holding on to the last thing that makes her who she is, when everything else has been taken away. Whatever the reason, she didn’t want to do it. There are a lot of things she hasn’t wanted to do in the hospital but she has always faced the challenges calmly without kicking and screaming, and does what she has to do.
Ashtyn didn’t want anyone to shave their heads to support her. It wasn’t a need she had. I don’t think she wanted to look at others bald since that wasn’t normal to her and she didn’t want to be reminded of her own baldness. To help Ashtyn get used to the electric razor, her uncle Jared sat on a stool for her to practice on. She used a number 7 hair clipper to trim the back of his head. After several swipes she didn’t want to do anymore. Her uncle Casey finished trimming the back of Jared’s head to even it out. After Ashtyn was able to handle the razor and watch Casey’s shaving skills, she was as ready as she was ever going to be. She sat on the stool and bravely allowed Casey to shave her head. She didn’t fuss, complain, or cry. She just took it. Afterwards she laid on the couch with a blanket, closed her eyes like she was asleep, and didn’t say a word. Jared sang a song with his guitar about her old and new hair. She did quietly laugh a couple times. When the song was done, her support team gave her kisses and left. We sat in bed and laughed a few times while watching Modern Family. At 2:30 am we fell asleep together in her hospital bed without ever speaking a word about what had happened that night.
Today she is struggling emotionally. She knows she needs to be happy at times. She knows she needs to be optimistic and find joy in her journey. She knows the importance of not forgetting who she is. She is a happy, funny, beautiful, smiling angel. She knows not to lose that light within herself. But not today. Today is a day to feel emotions that are real and understandable. “I am bummed just like anyone else would be.” Today she doesn’t want visitors. She wants to be left alone. She doesn’t want to talk. She doesn’t want to be talked to. I can tell that she is going through something she feels she has to do alone. Is she feeling anger, depression, sorrow, remorse, irritation, or discontent? Probably. However, I can’t ask her about it. It is my role to sit quietly in the corner, giving her space and time to feel what she needs to feel. But as she faces her emotions quietly within herself, I know she doesn’t feel alone. She does know there are hundreds of people that care. She does know there are hundreds of people that pray for her and support her. Ashtyn may need to sit in her hospital bed, by herself, in silence. She may feel she needs to be left alone without reading your encouraging words, or seeing people around her bed, or feeling the hugs of others. She may want to have time alone to go through the realization and depression of cancer and losing her hair and everything else she has lost when cancer came into her life. But as she faces her emotions “alone” for now, she knows she is not truly alone at all.
So here we sit in silence. I don’t know what she is thinking about or what is going on in her heart. Whatever she is going through, I know she’ll figure out for herself how to face the future. I believe she will face it exactly how she’s been doing it so far, with faith, optimism, and courage. She will rediscover her strength and abilities. She will recognize her inner and outward beauty. She will continue to lean on her Army for support, love, and prayers. She will press forward with hope and faith, remembering “Don’t give up. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Trust God and believe in good things to come.” Elder Jeffery R. Holland