It's too bad this blog doesn't come with a soundtrack, or I'd post a rendition of Valjean's singing -- still strong, but not improved by 6 or 7 months of lung disease. The prologue:
As we feared, Dr. Patel, the oncologist, confirmed that it is not only pneumonia and radiation pneumonitis but cancer that is thriving in and around Valjean's lungs. She has started her on Tarceva, which should shrink the tumor and have some palliative effects, but is not meant to be curative. Still, Patel said she thinks Valjean could look ahead as long as three months or, if she responds particularly well to the Tarceva, even more. Valjean's response: "Three months? My friends will be saying [and she sings] 'How can I miss you if you won't go away?'"
We had a visit from the Palliative Care liaison, and it looks like Valjean will be moved there on Monday. Kate and I checked it out and gave it our seal of approval: fabulous views, big screen TV, internet access, fold-out bed in the patient rooms, an exercycle in the family lounge, very friendly and accommodating staff. I think Valjean will like it, though she's become quite attached to life in the ICU. What's not to like? "I have a room with a great view. People wait on me hand and foot. And my friends come in and shower me with love. The food could be better." (Not a lot you can do with Ensure and jello.)
We will use the week in Palliative Care(and the PC social worker) to weigh the options for next steps. We've learned that inpatient hospice is reserved for the last 2 weeks of life, so we'll be trying to learn more about long-term acute care hospitals, home hospice (combined with a 24-hour hired home health aide), and possibly a cancer program at the Rehabilitation Institute of Chicago.
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12 comments:
ValJean--I have to say, I am not really sure what to write, as I just learned about your illness. Forgive me for being such a late comer here!
You can thank Cathy Dusburger (sp?) who sent out an e mail this week--you have wonderful friends who are all thinking of you! What a good feeling that must be.
When I asked her what was up, she sent me the link to your blog. It is a an amazing place and you are so generous to share your journey with us...what a gift. Your grace and clarity are amazing and I can't tell you how much I appreciate your openess.
So, you are probably wondering, "who's writing all this?"--Alison from the YMCA on Saturday mornings, and Tuesday night women's--though as I mentioned, not been around much lately due to out of town travel.
This all got me thinking about when we first met--I heard your name and started wondering "I wonder where such a lovely name came from? Two dear relatives' names? An old family name?" -- because I had never met a "ValJean" before. Of course, I was so busy being in my own head, I probably didn't hear a thing you said!
Anyway, over the years, I started to listen to what you had to say and it always helped me. As your wonderful blog is right now.
Thinking of you and saying a prayer...
Alison
So, maybe we could send some very funny dirty jokes to keep some humor going around among us. What do you think about that?
Patricia Casey
i have not figured out how to get my name in the front of this message.
Valjean,
People would like to send cards. Would it be OK to give out your home address via email?
Pat Casey
Dear Valjean -- hard to know what to say. We'd like to come visit but don't know where the palliative care center is. Maybe someone can send us an email about it when it's convenient.
Love, Faye and Joyce
hey Valjean,
I called yesterday and the desk said you were not accepting visitors. Then I got distracted by errands. Avril tried Friday night, and no visitors.
I'm calling this Sunday morning, and if you're still incognito...then I send my love. Otherwise, I'm off to drop in for 5-10 minutes.
Just so you know-love Sallie
I wish it was for a different reason but it sounds like you're hosting a party in the ICU. We'd love to stop by if only for a few minutes. Is there a way of knowing a good time to see you? Or should we just do it and take a number - which would be fine with us. We love the very idea of you.
Sally & Tom
OK so dirty jokes may not be appropriate for the blogspot, however jokes of a clean venue might work as I hear that laughter is a healing medication.
Does that work for you?
Patricia Casey
Saw Valjean this morning. What a smile. Finally she's getting something like real food. Real soft real food. It was hilarious as she selected her lunch from the menu.
I heard from her friend Bob and from Valjean herself that she will move to Prentiss Hospital, 16th floor when their's a bed available.
Not sure I got that right so don't count on this information.
She was in good spirits and seemed comfortable. Sallie
Where is palliative care? is it still at USS Northwestern or somewhere else? Would be good to know, so we can continue to visit...
I like reading comments from Valjean's friends but I'm not interested in reading any jokes on this blog.
I am thinking about and wishing you peaceful and good thoughts. I miss you! Love Susan
It was so good to see you Friday. Your strength and courage amaze me. I still expect to see you walking in with your red shoes or your pink leather jacket or some other Valjean trademark talking about Zimbabwe or some peaceful Zen retreat. Instead, I'll stop by again to hear you at the USS Northwestern.
Thinking of you alot,
Stephanie
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