Monday, January 24, 2011


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.


  1. Flynne, Your strength and determination continue to amaze me. I follow Aynsley and Ross's blog regularly and am just overwhelmed by the deep love, respect, and yes, even joy in this horrible time, that your family has for each other. I continue to hold healing thoughts and send out frequent prayers for you.

    Much love,

    Beth R

  2. Aynsley, this is Cami Lines Carris. I was Alex and Maddie's babysitter. My heart goes out to your family. Eight years ago my Dad was diagnosed with prostate cancer. It was inoperable, and he received radiation at Overlake. I worked for my dad, and I would do my very best to stay positive while I was with him. After work I would go home and fall apart. This post reminds me of a day about 3-4 months after his diagnosis. We were at work alone in our office, and it was all just too much for me. I began to cry. We stood together hugging and crying for a long time. This stands out in my mind. Being strong for him was important, but acknowledging what a difficult and scary time it was also had value to us. I'm glad you are home.
    I wish you all strength. ~Cami

  3. Aynsley,
    thank you for leaving us with that adorable image of you and your mom dancing. I wish I could be there for the performance. maybe you can video-tape it.
    Picturing you 2 in the hospital room dancing reminded me of being in the hospital when I was little with my mom. She spent quite a bit of time in there (colitis) and I got quite used to spending time there with her, cuddling in bed, putting up pictures on the wall, or just hanging out. Once, she even celebrated her birthday there, with cake and balloons! and yes, there was dancing, too. I'm not sure but I have a vague memory of jumping on the bed, which I'm sure was frowned upon. Anyway, I just wanted to share that with you. Celebrations can happen in the most surprising of places.
    stay strong,
    love and hugs,

  4. Aynsley:

    Thank you for this update. For me, although sobering, it also raises our collective hope that your Mom will get better. There are so many good signs and I know she will continue to fight through this - all with the amazing love and support of your family and friends.

    Nice that, in addition to the Carnegie Deli food (which I haven't stopped thinking about...), you brought the lotions. There is no doubt your Mom was purring like a cat while you applied it to her dry skin.

    I am a person who is very visual - I now have a picture in my mind of you two ["married" ladies] sitting there singing and dancing to "I'm a Single Lady". I want the video from the birthday party this Sunday!

    I hope today is a good day. Love to you all!!!


  5. Dearest Flynne and Family,
    My thoughts and prayers are with you. May you continue to be blessed with courage and strength. With all of us holding you close to our hearts we send you good vibs and lots of love.
    I may be absent but there is'nt a moment that i dont think of you. All my love to you and your beautiful family. I know your birthday is coming and someone told me that on that day you have a special guardian angle.......
    lots of love and always good thoughts.
    Cindy Abramowitz xxx

  6. Dear Flynne,Aynsley and Family,

    I couldnt help but smile at your last paragraph. Not surprised at all that Flynne wanted to "make up" a dance to "Single Ladies". This is the same person that "made up a dance" in case one of us "tripped" on the way up to the bimah @ our Bat Mitzvah. What a great visual!
    I hope you get your needed sleep and rest today.

    Much love,

  7. you all continue to inspire me in every possible way....

    sending lots of love and good thoughts to each of you,