dp's roommate is an 84 year-old black woman named Pearly. From what we've gathered, Pearly had a tumor behind her eyes that was removed a couple days ago. She's deaf as a post, and her daughter took her hearing aids home after they told her that she couldn't wear them on the fifth floor -- apparently for the same reason I can't turn my cell phone on.
All the patients have lots of stuff written down, so that staff can see what's going on, but it seems that there's no place to write "she can't hear," so that's become dp's job, and mine when dp is sleeping.
Sometimes, Pearly will say "I don't have my hearing aid in," but often, she just stares at them. She has a deep, resonating voice, and sounds kind of like Maya Angelou. Her head is shaved, and there's a nasty-looking set of sutures that go a third of the way around her skull.
Every couple of hours, the nurses come around and do assessments to make sure that brain function isn't deteriorating. They ask you your name, where you are, and what date it is, and then they check motor function -- "grab my fingers. Push me away. Pull me toward you. Lift your toes, push them down again." dp's still passing them, but Pearly's answers can be kind of random, and then half the time she just won't answer -- whether it's from deafness or disgust, I don't know.
She also has a lot of phlegm, and they've given her something like a dentist's suction (only much bigger) to suck it away. The sound of the suction is a lot like fingers on a blackboard. I'll never hear Ross Perot's "giant sucking sound" speech the same way. They've got her in arm restraints, because every couple of hours she starts pulling the various wires and tubes out of her body. The alarms go off, and Diana instinctively starts feeling her wires and tubes to see if everything is still where it's supposed to be.
Diana's feeling a little bit better. She slept most of the afternoon. Her blood pressure is still a little high, and she's getting insulin to keep her blood sugar down and Zofran to keep her food down. The insulin works -- the Zofran doesn't. She'll take a sip of water, and then spit it up over the next 10 minutes or so. Still, she's ordered some supper -- bananas, grapes, applesauce and some toast. Ever the optimist, my honey...
She still doesn't feel very social, and I've fended off the people who called in Thanksgiving wishes. We love you all -- we just don't feel much like talking right now.
I do read her the comments to the blog, at least the ones I can read without tears. We don't cry about our situation much, but your good wishes and good deeds move us often.
...our scenario surrounding the big C.
Welcome!
This weblog began as a way to keep loved ones informed as we learned about our diagnosis in March 2007.
"the sCenario" has evolved into a journal, a photo display, an historic record, a scrapbook, an inspiration, a place for loved ones to gather.
We hope you enjoy your visit!
--Kevin and Diana
5 comments:
Hi Kevin,
Do you know if surgery is still in the plans for tomorrow? Unless you tell us not to come, some of us would like to sit with you tomorrow. We are all thinking of you.
Love,
A sister
hope u feel better.
The head head doc was around for rounds this morning, and he said that there was still no decision about surgery.
Most of the hospital staff has tomorrow off as well, so we're thinking right now that it won't be happening tomorrow. I'll call Katie if that changes.
They send dp down for another CT scan this morning, just to make sure everything was stable. We never heard another word about it, so we're assuming that it showed no new problems.
The decision about surgery may depend on morning labs. I would think the potassium and blood sugar should be somewhere near normal before going under anesthesia.
I understand about not wanting to talk to anyone. You know that one way or another we are all there with you.
I was there Thanksgiving eve for a couple hours and will testify to dp's discomfort. My two cents was to take some of the stiffer drugs they are offering, but I sense Diana's desire to connect and be present with Kevin. It's definitely about enduring right now. Diana commented that someone told her "you're not the ONLY person here with a brain tumor, you know." The wonders of a specialized practice at a large teaching hospital. Not rushing her to surgery seems like "good news" at this point, since those with the worst scenarios (no pun intended) are the recipients of triage.
I can testify to Kevin's . . . "Kevin-ness," for want of a better term. Other friends have taught me that these times are about taking care and that's what he's focusing on, and doing a very good job.
My sense of things is that not hosting people during this period is a very appropriate response. Diana does better when she holds still and conversation is good, but leads to wretching. Our friends Kevin and Diana are not lost and the guilt we feel for not somehow helping is not necessary. We are all present and they know it. Still we long for tangible tasks to perform, assistance we can give, something concrete we can attach to.
We'll all find time and ways to help, and we can help each other, too. I'm thankful for all of us.
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