Well, for goodness sakes. People are gonna start ducking into dark corners to hide from me and mutter, "Here comes that kooky grim reaper again."

Since September 25th the news to land with merciless blows has been crushing. Slowly but surely every crumb of hope has been taken from me. Every single crumb.

The roundhouse blows started Friday, November 21st when I was told my pulmonary function tests were the second worst ever seen, and that I should make an appointment with Palliative Care as soon as possible, and that my children should start rotating visits to be with me, and that when awake I am processing only 12% of my oxygen intake... when asleep, far less, and that any given morning I might not wake up.

I still cupped hope in my heart.

Then I was told I had 0% chance for a donor match for a lung transplant. The antibodies in my blood are insanely high and antibodies have a strong memory card so that no amount of immune suppressant drugs could be depended upon to prevent my body from rejecting a donor organ. If I survived surgery, I would most likely spend the rest of my life in the hospital. Call me silly, but that ain't living.

So, I made my choice and my children have accepted it. Dr. Budev indicated that would be the toughest part... my children accepting my choice, which they did - not only in deference to me, but because of the information given in a conference call they had with Dr. Budev at Cleveland Clinic. She's preeminent in the field of high PRAs, which is my issue with transplant.

After 2 1/2 years of honest hope and honest enthusiasm, it was all snatched away - every bit of it. There were no moments of wailing and keening and gnashing of teeth. It was more like I'd been thumped with a ball peen hammer.

As I once observed with Dr. Lancaster, my pulmonary specialist at Vanderbilt, just because a person does everything right it doesn't mean that everything will turn out right.


*****


The first week after I was told I could die in my sleep any given night... bedtime wasn't a happy time. Cat naps weren't the Cat's Pajamas anymore. Power naps - pfffft... they might jettison me to worlds beyond. I wasn't a nutter, but every muscle in my body clenched as I tried to fall asleep. Um, maybe I was a nutter.

I'm doing so much better now. I still want to have hope in my life, but I'm afraid to hope anymore. All the hope I invested now seems wasted. But it wasn't. And here's why:

Hope is a natural high.

I'll continue to tiptoe toward hope because I'm taking Pirfenidone, which might give me an extension. I tiptoe toward hope because I continue to wake up every morning. I tiptoe toward hope because my 02 saturation remains high when my movements are measured carefully. I tiptoe toward hope because miracles do happen - and why not for me, maybe, possibly.


*****


Last night was a bad night. Though my friends tell me to call any time of the night, I just can't do it at 2 am. I awoke several times and sensed my breathing was different. I became anxious. I hate that. But I fell back asleep several times and have had a GREAT day.

I did two loads of laundry and changed the sheets on my bed and steamed some zucchini to go with the pot roast my housekeeper delivered today and talked to my children and wrapped presents for Olivia & David and wrapped David's stocking stuffers and wrote a couple of Christmas cards.

I hope to sleep well because tomorrow is a big day with Palliative Care in Nashville. Nancy Bradshaw is driving and we're meeting with Chase, my eldest, who's flown in to be with me. I can't wait to see him!

Hope.