I shutter my room tight at night. Not even the slenderest moonbeam slips through the slats. Contrary to the deep dark of my room, noise rises to silly decibels. I sleep with a white noise machine. My bed also has a massage feature - akin to the beds found in mid-century motels where guests slipped a quarter in a slot and the bed jiggled for 30 minutes. Yup. I have one of those without the quarter slot.

Unless I'm due at Vanderbilt, I rarely set my phone alarm. I sleep until my body is ready to stir, and that's usually after 10 or 11 hours of hard sleep.

I awake with leisure and with no inkling of what is happening beyond my comfortable cocoon.


*****


I usually eat two meals each day. A late breakfast. An early dinner. I nuke as much as possible because I can't be around flame and I can no longer be without oxygen. It ends up it was true... I closed my oven door for the last time the other day. The cheddar muffins will be made by my cousin when she arrives. I also have the ingredients for a spinach casserole and potato casserole - all of which will wait for others to prepare. I'm okay with this. Seriously.

I nuked some scrambled eggs today and toasted thick slabs of bread, which I slathered with thick slabs of butter. I spooned blackberry jam on one slice. The other slice I eyeballed for a moment and then dipped it into my dark roast coffee, sweetened and diluted with milk. The rich bread, soggy with coffee took me to the memory of doing this with my father when I was a little girl. The butter left oil slicks on my coffee as I dipped one corner after another.

And then I called my father.


*****


After I post this, I'm going back to bed to alternate reading a quality book (All the Light We Cannot See by Anthony Doerr), to watching trash TV. My current guilty pleasure is streaming Australia's Next Top Model. I know. Gross.


*****


Last night culminated with a near miss panic attack.

Yesterday was the worst day since my diagnosis. And believe it or not, it all had a good ending.

At about 10 pm last night my heart rate was still zooming. It had zoomed all day. This is discouraging for anyone, but especially for IPF patients if hypertension begins to co-mingle with the heart. I do not want to be listed for a heart/lung transplant, though they are done more often than we realize.

As I sat at my desk, my heart continued to race too fast. I knew I was going to be in a lot of trouble because I was losing the ability to process the oxygen produced by my concentrator. I needed pure oxygen. The tanks were in the garage. I didn't have the stability to get there. I felt compelled to gulp air, but knew if I panicked and started to gulp that I would be in way too much trouble. I came very close to dialing 911, but I talked myself off the ledge.

I managed to get to my bathroom and glanced at the thingy with my daily meds. It suddenly occurred to me - after a full donkey-nose day of difficult breathing and a rapid heart rate - that perhaps I'd forgotten to take my meds.

I had forgotten.

All day I'd been looking for zebras when I should've been looking for horses.

I need a keeper.


*****


My body reached a healthy rhythm in less than 30 minutes. I'd survived the day from H-E-Double Hockey Sticks.


*****

I guess I should make a brief mention that today I also started using the full face mask for oxygen. This isn't something I've resisted. I just recently received the equipment. It works so well! Better saturation. Yay!





Reenie with Ed hair


*****


My children have been conducting their own committee meetings - trying to figure the best strategy for me until the transplant. I would like to stay in my home and hire an assistant. Someone to keep me on track, cook a proper meal, do shopping and other little errands. Make sure I take my donkey-nose meds, for God's sake. Someone to talk me off the ledge of panic if it should happen again.

There is also a valid concern that my 2,000' above sea level may be too challenging for my lungs.

I think I'm going to try to stay in my home to be close to the legions of friends I have on the mountain. Yes, I'm bragging, but it's the truth. I'm very fortunate to have many friends on the mountain.

Pointing my scope down the road of positivity, after I successfully recover from a transplant, I will then relocate. It will be time. But this might be 1 or 2 years from now.


*****


Tomorrow I'll continue to include snippets of my ordinary life much like everyone else does. I think it's quite charming - and reassuring and real. I completely enjoy thinking of Nina's morning pilgrimage to the cheepers, or thinking about Nora stirring up peanut butter fudge today. It's nice to feel that connection.

Tomorrow I'll also write about a work of art in my home. I already have a special piece in mind. It gives me immeasurable pleasure.