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>From: "Deb Lewis" <[log in to unmask]>
>To: <[log in to unmask]>
>Date: Sat, 24 May 2008 20:53:36 -0700
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>Subject: [Ann-update] Update for Ann McCay
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>Hello Everyone!!
>
>It has been awhile since we've sent out an update. I often am planning to do
>it when the day starts, but by the end I'm dropping into bed very tired and
>without having written anything.
>
>
>
>Ann is not receiving this update so that I can let you all in on the info
>about her birthday which is Sunday the 25th--tomorrow. Her birthday has
>become very important to her this year. We're going to get takeout from Red
>Robin (which is a fancy burger place here) and a few people are coming over.
>She is still reading her email and occasionally writing one. I think emails
>for her birthday would be great. For those of you who read this at work and
>will get it after the fact, it's never too late for a birthday email. Just a
>reminder that Ann's address is
>
>[log in to unmask]
>
>
>
>As you will recall, Ann started Hospice in February. Most people are in
>Hospice only a few weeks, but because Ann's overall health is very good, she
>is taking full advantage of the program. She gets a bath visit three times a
>week, a nurse visit generally once a week and we see the social worker every
>few weeks. Ann is not too crazy about the nurse or social worker. I think
>she finds them a bit invasive. But they're really wonderful, caring people.
>Ann definitely is pleased with her decision to move to Hospice and doesn't
>miss the treatment at all.
>
>
>
>Ann's insurance benefit for Hospice is six months. Because she has
>stabilized somewhat she was worried they might throw her out of the program
>prematurely. When I asked her why they might throw her out she said it was
>because she's eating a lot. I assured her that Hospice is fine about eating.
>But we did get a good laugh.
>
>Speaking of eating, since Ann is no longer getting cancer treatment but is
>still getting steroids, she really does have an appetite. It has perhaps
>slowed down in the past week, but up to this point she has been eating
>anything and everything. Her mom sends boxes of cookies and we make weekly
>runs to her favorite restaurants. Ann has great and expensive taste in food.
>And it's something fun to look forward to. But when Ann is no longer with
>us, pleas send me off to a fat farm cuz I'll need it.
>
>
>
>Ann has very much benefited from the equipment provided by Hospice. She is
>not able to sit up without support from the hospital bed. And she benefits
>from the bed's circulating air mattress which prevents bed sores. Ann lost
>most of her muscle tone partly as a result of steroids to prevent brain
>swelling and because of the tumor itself. So she does not get up except to
>use her bedside commode. The original table provided by Hospice was a design
>disaster but after a few weeks we were able to convince them that another
>table should be sent.
>
>
>
>Hospice, like everything else medical, is very much influenced by your
>insurance. So everyone's experience is not the same. These problems are a
>little more significant when you're long term in the program and have more
>needs. But Ann's (and our) primary care doc has been really championing Ann's
>cause, and we've pretty much been able to get what we need. Our most recent
>win is to get a couple of PT sessions to see if we can do anything to
>improve Ann's muscle tone.
>
>
>
>The days are a little long and dull for Ann. She listens to music (mostly
>internet radio), reads her email, listens to the lessons from church which
>are available online, visits a little with whoever is here, and sleeps a
>lot. Reading the books from Bookshare or playing the online games has become
>too challenging. She still likes our large music collection but sometimes
>can't remember how to play them. She has been watching some of her movies
>(she has a lot of them) but it's hard to stay awake through them sometimes.
>
>She's fortunate to have almost no pain except for a very sore arm. 
>And as I've
>already commented, her appetite has been really good. So eating is a high
>point in her day.
>
>
>
>I've had a harder time keeping up at work since we started Hospice. We've
>made several attempts to hire care givers for during the day with no
>success. Right now our friend Terry is helping out a couple days a week
>until she moves to Boise and we're so grateful for her care and
>understanding of Ann. But I need to work up the courage to formally hire
>another care giver and I can hardly wait. I won't give you all the details
>right now (some are entertaining) but if you have to do this at some point,
>feel free to talk to me first because I might be able to save you a few
>mistakes. Anyway, this has definitely been one of our greatest challenges.
>
>
>
>Rick recently found a very interesting site which I think offers a lot of
>useful information for care givers of brain cancer patients in Hospice. We
>especially thought the examples of communication challenges and the
>discussion of personality changes were very true to form and actually
>somewhat entertaining. Most of the personal stories on the site are not too
>applicable because as I've already mentioned, most cancer patients don't get
>to Hospice as early as Ann did. But if you'd like to look at a very
>interesting and accurate site, visit:
>
>http://brainhospice.com
>
>
>
>In general we are all doing well. Rick has another lead on a job which is
>not in radio but would be something he can do. The cat and dog are
>co-existing with not much interest in each other. They each rule on a floor.
>
>Rick and I have our first anniversary this coming Wednesday. Hard to believe
>it has been a year. So much has happened in that time.
>
>
>
>There's probably more to tell but I can't think of it right now. There are
>actually funny stories in this as there have been in everything but they're
>a little complex to explain in email. Perhaps later I'll be more able to
>objectively chronicle this challenging and interesting period of Ann's
>journey.
>
>Meanwhile, if you're able to drop her a line for her birthday I know she'll
>be appreciative.
>
>
>
>Please continue to keep us in your thoughts and prayers.
>
>
>
>Deb & the Gang
>
>
>This is an anounce-only list. Your replies will go to Deb. If your 
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