Tuesday, April 19, 2011


Last night was the first girls only slumber party in almost a month. It was great: we both fell asleep at 9pm (in fairness, I woke up at 5am EST to fly here and was still mostly in that timezone), woke up at midnight for a bathroom break, then fell back to sleep immediately until 4am for another bathroom break. I got up for good at 7am and Mom slept another hour after that. I have a difficult time falling asleep under normal conditions, and usually if I'm up in the middle of the night, it takes about 30 minutes each time to get back to sleep. If Mom's having a rough night and is up every two hours, this is challenging. But last night, at 4:15am, laying on the floor, listening to the whirring of her IV and the ticking of the clock, I felt so good to be somewhere that I belonged. Not that I don't belong at home in bed with my husband in Brooklyn, but I belonged there in that moment and I wouldn't have traded it for anything.

The day started off overcast and cold, but the sun broke out this afternoon and we ventured out to the courtyard again for some sun. We sat in the sunny spot for half an hour! Sitting up is hard work for Mom, but she happily did it, feeling the sun on her face (as you can see from the picture-she's really basking in it!)

Mom's had a good appetite the past few days, but today the food that was provided wasn't appetizing to her. She ate an entire serving of cheerios and half a banana for breakfast-which she fed herself, sitting upright on the side of the bed!!- but lunch and dinner were a few bites only. She's also lost 3 pounds since last week, bringing her to 89 pounds. Mom gets weighed each week in the shower, and today was shower day. I love being in town and present for that, too-I think that bathing is a fundamentally healing thing and I love being in the room, helping to keep Mom warm, soaping her up and powdering her after she's clean.

I'm just now rereading today's events and realizing what a strenuous day Mom had: sitting up for breakfast, feeding herself cold cereal, shower, outdoor excursion...and that's all before 3pm.

At 3:30 this afternoon, a social worker from an agency for the blind and visually impaired came over to meet with us. He was great and told us about lots of amazing (free) resources that are available. There are many computer programs that are adapted for the visually impaired, allowing people to go back to work if they've lost their sight. There is also a fascinating mail library that works sort of like Netflix for audio books: they mail us one, we keep it for as long as we want, then mail it back and they send another. The books look sort of like the old school Nintendo games and plug into a digital reader that was designed by blind people-all of the buttons talk to you and are different shapes and sizes. It was very cool, but sort of unnecessary for Mom since she has audible.com and listens to books on her iPhone. But this could be something that she could do on her own in the future: there's no way she can navigate through the iPhone by herself. The social worker then asked if Mom had any questions for him and she really wanted to know about watching movies. So, apparently, there are some films that have some descriptive narration for people who are visually impaired. And, 5th Ave Theatre offers some of it's matinee performances with it as well, so people can "see" the scenes and understand unspoken situations. I don't know that Mom will ever be able to take advantage of any of these resources, but it was very cool to learn about how many are out there.

The best thing about the social worker's information packet was a large packet just for the spouse/partner of someone who has lost their sight. I didn't read it, but I LOVED that it was included. In all of this, Dad gets lost. Mom alluded to this way back in December when she said it's easy to be the patient, and in a small way, she's right. She doesn't have any responsibilities right now except trying to fight cancer. Dad is still working, trying to manage the house, the bills, feeding himself, sleeping, schelping me to the airport every two weeks, advocating for Mom, feeding Mom, helping Mom to the bathroom, giving her all her pills, emailing with the doctors...it was so nice that this organization made him a packet. I wish every oncology department we have been in had a packet for the spouse.

Mom also met with her occupational therapist today-they didn't have a session, but they talked about Mom's goals and how she could help. We all decided that Mom's remaining benefit sessions are best spent in physical therapy; OT has helped immensely in getting Mom walking to the bathroom with her walker and washing her hands, but she's sort of hit the wall as far as how much more she can do. The OT gave us lots of balance work suggestions, and I stupidly mentioned that she could sit up on the edge of the bed and close her eyes. (This is what I do with my clients all the time-whenever they've mastered a balance level, I ask them to do it with their eyes closed). Mom sort of laughed at me and reminded me that she basically always has her eyes closed. It was interesting to me: just like that, I forgot she was blind.

Tomorrow is supposed to be the beginning of Chemo: Round Two. We haven't heard otherwise, but wouldn't be surprised if they cancel it last minute due to the infection. Mom still has a low grade fever that we've been keeping in check with Tylenol, but I'm not sure how sick is too sick to undergo chemo.


  1. Aynsley, I haven't commented on any of your posts, but I have been following all updates since the beginning. I find myself drawing so much strength from you and your mom and the rest of your family, and when I go for more than a day without reading your updates, I feel that something is missing. I am so amazed by your honesty, resiliency, and strength, and your willingness to invite all of us into such a personal journey is a gift that I hope will come back to your family ten-fold through well-wishes, positive intentions, and love. Thinking of each of you every day... Best, Libby Rapkoch

  2. I know it is not the same,in anyway really, but my Mom lost her vision to macular degeneration. Her life was all about books. She was a librarian and loved to read. That same service you described was offered to her. She jumped at it. She "read" the books and... started a book club with her sighted friends. The services available to the blind are tremendous. The Lion's Club is dedicated to providing services. When she arrives home they will even come and help her to navigate and make plans to being able to resume doing simple things that we all take for granted. Hopefully her sight will return to some degree. You are all in my thoughts. Love, Kris Bledsoe

  3. Beautiful picture of the two of you. Thank you for posting! Please give your mom a hug for me and let her know I'll be out soon (when can I come?)