1.24.11

AYNSLEY:
Throughout this process, it has occurred to me that being sick involves the loss of much more than your health, vitality and strength. It also robs you of autonomy and privacy. Every second of Mom's life is monitored, every aspect of our family's relationships are on display; our world has shifted from a balance of public and private to only public. Even in the most wonderful examples of this: amazing friends cleaning our house and doing laundry once a week, scrumptious homemade meals and snacks being dropped off at the hospital room, highlight the fact that we aren't living any kind of normal life. Both of my parents have been living in the hospital for a month now. Neither one of them has had more than 5 consecutive hours of sleep in at least that long, if not longer. This is not sustainable. This worries me.

The long haul, the toll that this is taking is starting to finally show in Mom. She remains as optimistic and hopeful as ever, but she's tired. She's emotional. This morning, when it was just the two of us in the room, she finally broke down sobbing. It was actually a magic series of events: Dad had just left for work, radiation was done and we were in the middle of breakfast when the hallway got really loud. We closed the door, but could still hear the noise and so we decided to turn on some music. Mom requested a cover of Somewhere Over the Rainbow that she's really been digging, and then, mid bite of Cream of Wheat, began shaking. I immediately grabbed her hand and the sobs began. I jumped out of my shoes and got into bed with her and the two of us just snuggled in bed, listening and crying. After a few minutes, she just whispered, "We're going to get through this" and patted my hand. That's when Ross arrived. Taking one look at us, he was equal parts amused and alarmed, and came right to Mom's other side to snuggle up from the chair. Again, Mom broke down, frustrated with her blindness. "I just wish I could see you guys! And I want to be able to be here for both of your weddings!" We both just whispered "You will, you will." I don't know if we were lying or praying, but it was all we could do.

And then a nursing tech came in, reminding me yet again that nothing is private. I got out of bed, Ross finished serving the Cream of Wheat, and we went on with our day: physical therapy, occupational therapy, chemotherapy, lunch, visitors, visitors, visitors...

On the recommendation of another one of my amazing acupuncturists, I bought some reiki-infused lotions for Mom (and me!). We tried out the feet treat and a cocoa butter lotion for her dry skin and she loved them. Tomorrow we'll try a few more varieties. The first ingredient on all of the labels is "unconditional love." I'm not sure how they harness it, but what a thing to be lathered in. Healing comes in all forms and I'm not about to discount anything.

On that note, we had a visit from our hospitalist, Dr. S, this afternoon. She came in about 10 minutes after Mom had used the bathroom and she was still sitting upright on the side of the bed. Since she was up, Mom decided to do more occupational therapy on her own: using therabands, we did all of her upper body exercises. This is how Dr. S found us-Mom sitting upright on the side of her bed, doing bicep curls. Dr. S, who's a crier anyway, almost lost it right away. She just noted again how strong Mom is and how determined she is to fight. "You've already beaten the odds" she told Mom. Mom was surprised by this. "Really?" She asked Dr. S. "Oh, yeah. When I first saw you, I thought I was going to lose you that first week." Mom had no idea that that had been the case (though Dad and I definitely did-hence me demanding the oncologist tell me if she was going to suffocate). She started to cry again and just said, "I just have so much to live for." And Dr. S nodded and said that she was here anytime Mom wanted to talk about anything. It was the closest anyone has come to discussing her prognosis with her and I think it was frightening to Mom. But to me, it was exceptionally healing. The doctors don't know everything! If we had asked a month ago how long she had to live, they would have said a week. They would have been wrong, they still can be wrong, Mom can continue to beat the odds. Possible. Not probable, but possible. So I'll cling to that.

As Ross and I left the hospital tonight, Mom was in the midst of a blood transfusion. The radiation has left her red blood cell count lower that it should be (which is a completely normal side effect of radiation) and so they wanted to get her some more rbcs!
***if you are eligible to donate blood, please consider doing so***
The main side effect of the transfusion is that Mom will most likely feel more peppy. Which should be a good thing. Due to the transfusion, neither Mom nor Dad will sleep much tonight-her vitals must be checked constantly and the transfusion will take most of the night. In light of this, please consider postponing visits you were planning on making to see her tomorrow-rest will be essential and we're thinking she'll sleep a lot of the day tomorrow. If you want to come, just shoot me a text to see if she's awake 347 392 9116

Lastly, I'd like to leave you with my favorite thing that's happened so far. After another trip to the bathroom, Mom was sitting up on the side of the bed, not quite ready to lie down again. She started humming ba ba ba, ba ba ba, ba ba ba ba ba ba. I asked her shat she was singing and she sang it again, a little louder. It sounded familiar, but I couldn't quite place it. She shook her head and said maybe she made it up. But she kept singing it and dancing around (as much as you can dance sitting down). Finally, I figured it out: Single Ladies! I told her she was singing Beyonce and she got excited and said that the two of us should make up a dance to go along with that song for her birthday. "As luck would have it, there's already a dance to that song! Put your left hand in the air and flip your palm back and forth!" So both of us put up our hands, flipped them around and belted "If you liked it then you should have put a ring on it!" Maybe there will be a performance this Sunday.