Tuesday, February 21, 2006
If you tickle her right foot, she can feel it on the left.
I have been unable to write as Alice and I have been so … connected … and she doesn’t want me to spend time away from her. Today has been an up and down day. This morning Alice woke up with a head ache and we had a plan to take Alice to a local salon and get her hair washed. Her hair was so matted and had pieces of shaved hair and betadine still in it and she wouldn’t let me comb through it. She was so nervous to go, but I offered her some pain medication and let her know she could change her mind if she wasn’t feeling better. At least she’d get out of the house (I rented a wheel chair so we could start getting out a little). The salon has these great sinks with the comfy chairs and the woman who washed her hair was so gentle and kind and patient. After washing through her hair, she did these sweet French braids. Alice was so happy and she just kept thanking me for bringing her there and saying how great it felt to get her hair under control and clean.
The rest of the afternoon was a lot of ups and downs. Alice was very emotional and had some crying episodes. She’s weaning off her steroids and having some headaches and definitely it affects her mood. Over all, she’s amazing and really trying hard to get back to “normal”. We’re all struggling with what it “normal” anymore. It’s been quite a week.
Oh… and she says if you touch one foot she can feel it in the other. How weird is that??
There are so many things, so many memories I don’t want to loose and I need to share. Things I remember and need to share:
I remember when Evelyn, John and I took Alice back to the operating room. Evelyn went with us this time and after we said goodbye to Alice, I remember us all hugging each other and crying, and Evelyn saying, “that’s the hardest thing I’ve ever done”. Truer words were never spoken.
I remember John and I talking with Seldon and having him tell us how vascular and bloody the tumor was and how it had obliterated (was that the word he used? It stopped me in my tracks. Was it obliterated, annihilated or demolished?) her parietal lobe. The damn thing was eating away her brain. And after telling us how that tumor had destroyed a part of her brain he then proceeded to tell us how great the surgery went and how amazed he was at the outcome after seeing the mess he had when he went in. Neurosurgeons are strange folk, who he could go from talking about how when he removed the tumor it pulled off part of her brain (“but it was dead anyway, kind of mush”) to saying how great it all went. Excuse me? Can we go back to the part about pulling out part of her brain with the tumor??? That’s when Seldon told us that when he did the neuro-stimulation, that part of her brain was dead. After this conversation with Seldon, we had to wait another hour and a half till we got to see Alice. This was one of the longest hours in history. We came back to the waiting room to tell everyone the results and everyone was just talking at us … it was like they were all chipmonks in a cartoon … just chattering away at us. Oh, Calgon … take me away. (It was all so surreal.) We just couldn’t be around everyone – John went off to blog and I went off to vomit.
I remember saying to someone (my sister???) after we talked with Seldon that I didn’t think I could do this again, that I didn’t think I could go through all this again. And then I remember thinking, that’s absurd. But of course I could, and of course I would (and will) if it means I get to keep Alice with us. We’ll keep on going through this as long as we are blessed to have the opportunity to go through another round.
And then there is Nathan Seldon. The man never stops. He started on Alice at 7 AM and I saw him that night in the ICU at 10:30, finishing up charts and checking in on Alice (and on Valentines Day). While neurosurgeons are a strange breed, I will be eternally grateful for this man. For without him, we would not have had a functioning Alice much longer. Thank you.
I remember seeing Alice for the first time – just so amazed she was talking and moving and … alive. And we remember how she wanted to show us that she could use her hand.
I remember how kind and gracious Alice was reaching out to touch her cousins’ hand when she saw them for the first time after her surgery. I also remember her picking up her head and shaking the hand of some resident who came in to check her out in the ICU as she said, nice to meet you.
I remember Alice standing up to say goodbye to her cousin Karl who had traveled from the east coast to see her through this adventure. Standing up so she could give him a hug.
I remember how incredibly kind and gentle Evelyn was through this whole process to her little sister. And I remember how much Alice wanted her sister by her side.
I remember all the incredible love and support surrounding us by my whole family during Alice's surgery - waiting for hours in the waiting room. Waiting ... waiting... and I remember feeling surrounded by a blanket of love.
I remember never wanting my sister to leave and go back to Texas.
I remember sharing stories with other families at the family dinner on Wednesday night on the oncology unit; sharing stories that few can truly understand.
I remember the night before her surgery we all went to the Melting Pot (Alice’s pick), a fondue restaurant, and when we arrived the manager had a bottle of sparkling apple juice on ice and 4 balloons at our table when he heard that Alice had picked this restaurant for her “last meal”.
I remember the barbershop quartet that arrived at our house Monday morning before we took off for Portland to sing to Alice. I remember how I cried when they sang to her. They were so sweet.
I remember feeling supported by a community - the fund raiser at the school, the Great Harvest fund raiser, and the dinner at the Indian Restaurant the sunday before her surgery. All of these events carried with us and remain with us as reminders of all the love and support from our community.
I remember how incredibly blessed I felt when I realized Alice was moving all her body parts and talking.
I remember how incredibly big her incision on her head looked the first time I saw it.
I remember how swollen and puffy her face was and that whitish green color of her skin when we first saw her in the recovery room. Yet I also remember the serene smile on her face (John says almost monk like).
I remember the look on Alice’s face the first time she saw herself in the mirror after her surgery and saw her new scar.
I remember how scared she was to have the staple removed from her forehead (yes, she had a staple in her forehead!). And after all the anxiety about taking it out, (and it was such a big deal!) once it was out she said, “well that didn’t hurt at all.” (And John got a new tool for his collection – a staple remover.)
I remember the tears we have all shared together. All the tears of joy, tears of fear, tears for all the suffering and struggles.
And I remember all the hugs and kind words. All the love.
There are so many things I want to remember. So many things I need to remember so I can make it all a part of who we are and where we’ve been. There are so many stories, so many thoughts that are sacred and holy to me. So many stories I want to remember so I can always remember how grateful I am and how amazing it is that we are all here, all together. So many stories I want to be able to share with other families so they will not feel alone. So they will know there are others out there, crying and sharing and loving and surviving.
Can it be? Did we get through another one?? And what lies ahead? This I do not know, but we did survive brain surgery #3. And will tumor number 4 return? Or will there be #5? This I do not know, but it better beware … you can eat away at her brain, but not at her soul, and not at her spirit. For Alice is a survivor. (and if you tickle her right foot, she’ll feel it on her left foot too.)
Blessings to you all.
With peace and love,
Susan (and John)
The rest of the afternoon was a lot of ups and downs. Alice was very emotional and had some crying episodes. She’s weaning off her steroids and having some headaches and definitely it affects her mood. Over all, she’s amazing and really trying hard to get back to “normal”. We’re all struggling with what it “normal” anymore. It’s been quite a week.
Oh… and she says if you touch one foot she can feel it in the other. How weird is that??
There are so many things, so many memories I don’t want to loose and I need to share. Things I remember and need to share:
I remember when Evelyn, John and I took Alice back to the operating room. Evelyn went with us this time and after we said goodbye to Alice, I remember us all hugging each other and crying, and Evelyn saying, “that’s the hardest thing I’ve ever done”. Truer words were never spoken.
I remember John and I talking with Seldon and having him tell us how vascular and bloody the tumor was and how it had obliterated (was that the word he used? It stopped me in my tracks. Was it obliterated, annihilated or demolished?) her parietal lobe. The damn thing was eating away her brain. And after telling us how that tumor had destroyed a part of her brain he then proceeded to tell us how great the surgery went and how amazed he was at the outcome after seeing the mess he had when he went in. Neurosurgeons are strange folk, who he could go from talking about how when he removed the tumor it pulled off part of her brain (“but it was dead anyway, kind of mush”) to saying how great it all went. Excuse me? Can we go back to the part about pulling out part of her brain with the tumor??? That’s when Seldon told us that when he did the neuro-stimulation, that part of her brain was dead. After this conversation with Seldon, we had to wait another hour and a half till we got to see Alice. This was one of the longest hours in history. We came back to the waiting room to tell everyone the results and everyone was just talking at us … it was like they were all chipmonks in a cartoon … just chattering away at us. Oh, Calgon … take me away. (It was all so surreal.) We just couldn’t be around everyone – John went off to blog and I went off to vomit.
I remember saying to someone (my sister???) after we talked with Seldon that I didn’t think I could do this again, that I didn’t think I could go through all this again. And then I remember thinking, that’s absurd. But of course I could, and of course I would (and will) if it means I get to keep Alice with us. We’ll keep on going through this as long as we are blessed to have the opportunity to go through another round.
And then there is Nathan Seldon. The man never stops. He started on Alice at 7 AM and I saw him that night in the ICU at 10:30, finishing up charts and checking in on Alice (and on Valentines Day). While neurosurgeons are a strange breed, I will be eternally grateful for this man. For without him, we would not have had a functioning Alice much longer. Thank you.
I remember seeing Alice for the first time – just so amazed she was talking and moving and … alive. And we remember how she wanted to show us that she could use her hand.
I remember how kind and gracious Alice was reaching out to touch her cousins’ hand when she saw them for the first time after her surgery. I also remember her picking up her head and shaking the hand of some resident who came in to check her out in the ICU as she said, nice to meet you.
I remember Alice standing up to say goodbye to her cousin Karl who had traveled from the east coast to see her through this adventure. Standing up so she could give him a hug.
I remember how incredibly kind and gentle Evelyn was through this whole process to her little sister. And I remember how much Alice wanted her sister by her side.
I remember all the incredible love and support surrounding us by my whole family during Alice's surgery - waiting for hours in the waiting room. Waiting ... waiting... and I remember feeling surrounded by a blanket of love.
I remember never wanting my sister to leave and go back to Texas.
I remember sharing stories with other families at the family dinner on Wednesday night on the oncology unit; sharing stories that few can truly understand.
I remember the night before her surgery we all went to the Melting Pot (Alice’s pick), a fondue restaurant, and when we arrived the manager had a bottle of sparkling apple juice on ice and 4 balloons at our table when he heard that Alice had picked this restaurant for her “last meal”.
I remember the barbershop quartet that arrived at our house Monday morning before we took off for Portland to sing to Alice. I remember how I cried when they sang to her. They were so sweet.
I remember feeling supported by a community - the fund raiser at the school, the Great Harvest fund raiser, and the dinner at the Indian Restaurant the sunday before her surgery. All of these events carried with us and remain with us as reminders of all the love and support from our community.
I remember how incredibly blessed I felt when I realized Alice was moving all her body parts and talking.
I remember how incredibly big her incision on her head looked the first time I saw it.
I remember how swollen and puffy her face was and that whitish green color of her skin when we first saw her in the recovery room. Yet I also remember the serene smile on her face (John says almost monk like).
I remember the look on Alice’s face the first time she saw herself in the mirror after her surgery and saw her new scar.
I remember how scared she was to have the staple removed from her forehead (yes, she had a staple in her forehead!). And after all the anxiety about taking it out, (and it was such a big deal!) once it was out she said, “well that didn’t hurt at all.” (And John got a new tool for his collection – a staple remover.)
I remember the tears we have all shared together. All the tears of joy, tears of fear, tears for all the suffering and struggles.
And I remember all the hugs and kind words. All the love.
There are so many things I want to remember. So many things I need to remember so I can make it all a part of who we are and where we’ve been. There are so many stories, so many thoughts that are sacred and holy to me. So many stories I want to remember so I can always remember how grateful I am and how amazing it is that we are all here, all together. So many stories I want to be able to share with other families so they will not feel alone. So they will know there are others out there, crying and sharing and loving and surviving.
Can it be? Did we get through another one?? And what lies ahead? This I do not know, but we did survive brain surgery #3. And will tumor number 4 return? Or will there be #5? This I do not know, but it better beware … you can eat away at her brain, but not at her soul, and not at her spirit. For Alice is a survivor. (and if you tickle her right foot, she’ll feel it on her left foot too.)
Blessings to you all.
With peace and love,
Susan (and John)
# posted by heinzfamily @ 11:50 PM 
