Sunday, December 09, 2007

The Waiting Game

Debra on Friday, December 7, 2007

Debra, Sofie, Gracie 2 and Pounce

December 09, 20007

The Waiting Game

So as you can see from the picture, I’m in the hospital. I have been here since Thursday, and I apologize for the really bad hair. It’s kind of funny when you go into the ER. Kind of like when you go to the car repair shop. I thought I was coming in for dehydration and exhaustion. (I’ve been sleeping about 75% of each day and really unable to get much in, even liquids.) Come to discover, I also have fluid on my lungs, and a raging bladder infection due to the dehydration.

Those of you who will recall my last ER experience, which was something like 9 hours in hell, will be pleased to know that following extensive renovations, Duke now has an efficient and comfortable waiting room set up. I spent 8 hours in the ER, was seen by great people, and didn’t mind the wait at all. I was absolutely grateful when the resident suggested that I check in for a couple of days. Truth be told, it’s been terrifying at home. I keep wondering if I’d be lying in bed some morning, unconscious, and Sofie would find me that way. And I really can’t take care of myself anyway. So, I was absolutely delighted to be checked in as a guest of Duke.

Of course, there are tradeoffs. When you first come in, vital signs are done every four hours, which is probably good, but they’re usually introduced with a tap on the door and the clanking of a cart which, if you were sleeping, rattles you to your bones and wakes you up. On this particular first night, at one point shortly before 11 o’clock, the door flew open, the lights were flipped on full power, and there stood Agnes, in bright red scrubs. She just wanted to introduce herself as my nurse. There wasn’t anything in particular for her to do, as it wasn’t time for my vitals yet, she just wanted to say hi. (!) She actually turned out to be terrific, very accommodating, and quite unlike the nurse I had the next day, who, whenever I asked a question, seemed to get more and more guarded with me, as if I were questioning her very ability to be a nurse, which I wasn’t; I just like to know stuff.

So the days have gone by, with various fluids dripping into my port, to hydrate me, and with me making feeble attempts to eat small amounts of food and drink small amounts of liquids so I can stop the IV fluids. So far we’ve stopped and restarted the IV fluids three times. Food is absolutely unappealing. This AM I made myself eat scrambled eggs for the protein, but only after staring them down for two hours, so they were congealed AND cold by the time I put them in my mouth. It’s not that I’m nauseous; it’s just that food just doesn’t appeal at all, and I feel full all the time.

People have been great, calling to say hi and send their love. It’s hard to talk most of the time because I’m short of breath, which is another thing that scares me, because of the past history of emboli. But I feel good, and I’m being watched over so carefully, and in fact, I have permission to just not take care of myself, much less anybody else.

Joanna Lee and her daughter Naomi, one of Sofie’s earliest friends from California, had made plans to visit this weekend, about two months ago. Little did we know that I would barely see Joanna and that the visit, of course, would turn into a child-centric weekend. (High School Musical on Ice and a birthday party at a climbing gym.) Joanna is in fact being the scribe because I know, faithful readers, that if three or four days go by without my blogging, people think the worst.

So now that I’ve said the words, let’s talk briefly about the worst. There are still a lot of unanswered questions. The bone-crushing fatigue that I’ve been experiencing is quite likely to be associated with the amount of radiation I had. The loss of appetite, less so. The cancer is spreading, without a doubt. I don’t even need a CT to tell me; I can feel it. So now we are in a waiting game. Jamie is focusing her energy on Sofie, which is as it should be. Sofie’s definitely feeling the stress more, and I know that my being away and so sick is really hard on her. I’ve contacted hospice, because I know it’s time to start looking down that path, and I’ll select a treatment team within the next couple of days. Various friends are making plans to be part of the care team over the next couple of months. I know many people have wondered if they can come, but I’m trying to pace this whole thing, and there are still so many unknowns. For now, Brenda Laribee is the official keeper of the schedule, and point of entry for all guest inquiries. I truly hope that I’ll get some of my energy back and that I’ll have a few more months than I feel like I have right now. Today was just one of those days. Try as I might, I couldn’t get myself to feel better for more than half an hour at a time. So it’s a waiting game, and I’ll try to keep you all posted. --posted by Jamie on 12/09/07


Musings of a Personal Kind said...

You hang in there darlin! We are pulling for you and Sophie and Jamie here in San Diego. Deb and I are sending you all the best we can muster. You are in our everything (well, maybe not everything but certainly in our thoughts and prayers!).

Many thanks to those who are scribing for you. Hearing from you, even through someone else's hand, is wonderful!

We love you girl!


Timothy Leifield said...

Hi Debra,

I just rec'd an email from Greg Rebchook who rec'd an email from Maria Ekstrand.

Had no idea you were going through this ordeal. I'm sending e-hugs and energy from Mt Sanitas in Boulder, CO.

Love, Tim Leifield

(Used to be at Stop AIDS in SF.)