Being home

May 10, 2008
Subject: Being Home

This has been a wonderful week. Aria hasn’t felt this well in months. It is amazing to see in a week’s time her appetite return, her energy level increase and her desire to be independent soar. She is resting well at night and naps for up to 4 hours during the day. She has had no vomiting or diarrhea for over a week. I have an overwhelming sense of relief that I’m savoring. The weight of ‘urgency’ has been lifted for a short time and I’m grateful. I don’t have to put the baby down quickly to rush and scoop Aria in my arms as we dash to the bathroom. I’m not waking in the middle of the night running to her to help to the bathroom, nor am I in bed listening to her vomit while Doc is comforting her. I’m not struggling to find things for her to eat that are healthy and full of calories. I’m not watching her, dismayed that only a bite or 2 of what used to be her favorite food is now making her tummy feel ‘fro-uppie.’ I’m not carrying her and Rianna up and down 2 flights of stairs throughout the day. This had has been a wonderful break for us all. Like Doc said last night, “I’m just so glad Aria gets to have a little break and feel like herself again.”

When we arrived home from the hospital, Aria’s counts were still low and below the recommended level for visitors. She was also not able to go outside and play nor was she allowed any fresh fruit or vegetables. Shockingly, the bacteria that naturally occur outside and on fresh fruit and vegetables could be enough to make her sick. Our vigilance remained high but seeing her feel so much better made us feel a little more relaxed. By Monday morning, we were hoping to see her counts improve and were a little stunned that they hadn’t. It was worrisome that she wasn’t bouncing back as quickly as we had hoped. Dr. Trobaugh was concerned and also a little surprised so we were told to come back to clinic on Wednesday to check her counts once again. Aria’s counts have to be 750 or above in order for her to resume her chemotherapy as well as stay on track for her Delayed Intensification phase of treatment, which starts on May 16, 2008.

Every day Aria seemed to improve. She was back to telling her jokes, which always make me laugh.
Aria: “Hey, mom, let’s tell jokes!”
Mama: “Fire away.”
Aria: “Mom, I’m gonna poop on your head!” Aria throws her head back in a peel of laughter. I’m giggling too and acting completely disgusted.
Mama: “Aria, I’m going to pee in you ear!”
Aria: “Ewwwwwwww! Hey, Mom, I’m going to poop on your eyeball.”
Mama: “Aria, I’m gonna poop on your toes!”
On and on this goes and we bust ourselves up with this nonsense. Aria’s laughter is true music to my ears and having her personality and spirit freed from the confines of chemotherapy has been glorious.

It is a short reprieve, but we are learning to enjoy these moments as well as be fully present to them. Aria’s Wednesday counts shot way back up to 1,000 and this was great news. Her immune system kicked in, which is reassuring to know that her body can recover given enough time. The weather has been beautiful so I’m delighted that we are able to be outside playing and enjoying the fresh air.

Doc and I are going to enjoy this down time before Delayed Intensification, which I have said more than once is intense (8 new chemo meds for starters!). It will be a focused time for me because we’ll be going to clinic every week sometimes every day during the week for treatments. This phase is 8 weeks long provided there are no bumps in the road. After we reach the end in early July, we start the maintenance phase of treatment and by all accounts this is a level path with much of the same scenery that is easier to travel. What we face now is our longest and most challenging climb. Doc and I are preparing both mentally and physically and right now being quiet and at home with the family has proven to be exactly what we need.

I’m learning that my needs often present themselves only in the moment. I used to be able to plan and anticipate but life right now has extinguished those abilities and in their place I’m forced to practice greater flexibility and spontaneity. These have been wonderful teachers offering a host of new perspective. In this moment I am very grateful for them.

It is no small wonder to be well and healthy. ~j