Friday, January 28, 2011


I feel like everything throughout this process has been one step forward, two steps back. I have a hard time seeing things in aspects other than absolutes-things are either fabulous or horrendous. We're now settled in to the KG Home and while the staff is amazing and Mom's care is much more personalized, it's undeniable that she's exhausted. Plain and simple. She ate a few bites only of breakfast today, about half a cup of soup and a few bites of veggie pizza for lunch and another half a cup of soup for dinner. She has been drinking milk and a good amount of it-it seems to be the perfect consistency for her swallowing difficulty and she likes it. Plus, it's nutritional calories instead of simply sugar calories like juice and soda. But still, her appetite has been very diminished since we arrived and it's concerning. Though it could be due to the lack of marijuana-we didn't get it until dinnertime tonight, and she hadn't had it since leaving Overlake. She's been saying that she doesn't think it's doing anything, but I pointed out that on it, she could eat an entire bowl of cereal whereas today she only ate a few bites. She conceded that maybe it's working after all.

In addition to the poor appetite, the fatigue really bothers me. She has been sleeping a LOT, maybe twice as much during the day since we left Overlake. We're all pretty sure this is due to the Taxol (systemic chemo), and normal, but it's still very scary for me. She looks like a cancer patient. She's lost about 25 pounds (and I have managed to find at least a few of them-I must be the only person in history to gain weight during her engagement!), her muscles have wasted, her skin is burned from radiation, she's lost her hair, she's aged about 20 years in the past 5 weeks. And when she's energetic, it's easy to overlook all of those things. But when I sit next to her, watching her sleep for hours, it's heartbreaking.

So, I viewed today as a bad day. She was a bit uncomfortable during the day, she slept a lot and she didn't eat much. She did have a good physical and occupational therapy assessment in addition to a great speech therapy assessment. The staff here is undeniably excellent. She walked a bit and sat upright for awhile (longer than planned when she was interrupted in her wheelchair on the elevator for a fire drill), but still, I don't see those positives as much when I'm in the midst of my version of a bad day.

But I have to learn not to see things in such terms. I need to embrace the shades of gray. And so, in yet another miraculous moment, the universe intervened and taught me a lesson. At 10pm, Dad called me with the results of the lumbar puncture: there's no more cancer in Mom's cerebral spinal fluid.

Let me repeat: there is no cancer in Mom's cerebral spinal fluid


  1. did i read right???
    no more cancer in her cerebral spinal fluid???

    but this is so wonderful!!!
    I am crying of joy!
    I m praying so hard!
    Thanks God!

    today is my birthday and this is the best best gift ever!!!
    love you Flynne!!
    talk you soon.
    xoxox Marisa

  2. ok - clearly, there are going to be good days and not-so-good days.......and it definitely sounds like yesterday was one of the not-so-good ones.............HOWEVER, let's focus on the news at the end of the blog!!! THAT IS DEFINITELY GREAT NEWS!!!! It's clear that Flynne's fighting spirit - and the meds - while taking a toll on her strength and appetite, ARE WORKING!

    I pray for more good days - and more news like this! Please know that we're thinking about you all and sending all our best.

    I hope you're enjoying having Gary there with you - and I hope the birthday weekend is all good!

    Have a good day. Love, Me

  3. Embracing the gray is asking a lot...navigating the gray may be easier to think about.

    The news about no more cancer in cerebral spinal fluid is freaking amazing!! What a great birthday gift on the eve of a very special Birthday weekend.

    Love you all,

  4. Aynsley,
    NO cancer in your mom's cerebral spinal fluid! What fantastic news on the day before her birthday! Your honesty is so touching and potent--of course the hours spent watching your mom sleep, knowing the fight she has right now, wanting to take it all AWAY!--well, I can't imagine the ups and downs. I'm so glad the universe intervened at just the right time to say, screw you, spinal fluid cancer cells!

    Tomorrow, since I can't be there to help you all celebrate Flynne's bithday, I have 3 friends coming over and we're going to make cranes, sending healing and joy and love and strength and energy. We're going to decorate them with all things joyous and beautiful and colorful and loving, just like your Mom.

    All blessings,
    Kimbo xo

  5. Great News!
    Remember, if your mom is sleeping, it is what her body is telling her to do. It is the time for healing and letting the medications do their thing. Also, the move to KG is exhausting, and she is recovering from that.
    Tell her happy birthday from us,
    Cherie and Ron Klein

  6. that is AMAZING news! All Flynne's hard work and perseverance is paying off! And, yes, sleep is part of that work. I know you know that but I'm sure it's easy to forget in those long quite hours of her slumber.
    What a perfect gift she has given herself for her birthday! It's nothing short of a miracle.
    wishing you many more miracles in the days to come.
    much love, smiles and tears (of joy),

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  8. with all the Passovers we had, DIANU!

  9. Great news!!!

    Also, Is there an address where we can send birthday cards for Flynne?

  10. Happy Birthday Flynne - a fantastic birthday gift for sure. One GIANT step in the right direction.
    If sleeping A LOT produces these results...SLEEP ON!Hugs...Alesa

  11. I'm so happy to hear this news!! Flynne, you've been fighting so hard, no wonder you're exhausted. But this news will hopefully buoy you and your loving, amazing family. I'm dancing with joy! Love to you.

    And happy birthday!

    Beth R