posted by Mary Lello, Monday, January 19, 2009, 6:47 PM
Greg Jalbert is here as you may know if you read his most recent message on the message board. He has jumped right in with the men's healing circle, snow blowing the driveway, clearing snow off the roofs, being 100% there for Jim AND making sure Stacie and I get to go off and do other things besides ... well, being here.
Today I went for a ski with my friends Alice, Mark and Art. Oh, and Ella, our best 4-legged friend. It was incredibly beautiful out there after about 14 inches of snow dumped on us yesterday. It has stayed cold enough so that snow is still light and powdery - vs. the heavy cement that usually happens on the Maine coast after a storm like this. It was rejuvenating to say the least. Still, I couldn't help feel how much I missed my best friend being out there too. Jim would have loved it today.
But Jim has been down with a headache - for 2 days now. When we saw Dr. W. on Friday she wasn't alarmed and told us "ibiprofin or the oxycodine if he needs it". It didn't help. Today we kept giving him the oxyc. at the correct hourly interval and it wasn't even touching his headache. We called the doctor. Left a message. They didn't call back. Stacie finally called them again hours later and told them we were taking Jim to the ER unless they told us different. She got the RN on the phone immediately (the Lioness was prowling!!) and they put in a subscription for more steroids to help reduce swelling. OH! Jim is still on the couch in severe pain but hopefully the meds will kick in by tomorrow. This is what bad days look like - and it has a huge effect on all of us!
I called Dana Farber today - after waiting since Thurs. to call them and ... THEY WERE CLOSED!! Holiday and all. There was a moment when I thought Stacie and I might chew through the wooden kitchen chair legs!!!!!! Frustrated? Oh man, you bet! So we call tomorrow. We find out what the near future holds maybe, we get tossed around some more in this sea of medical doctors, feeling on hold, no call backs, all kinds of pharmaceuticals I've never ever dealt with and .... grief, fear, and. now, vigilance.
Stacie said tonight - 'we have to become REAL Lionesses again now". And she's right. The pride is down one she-beast (we miss Donna horribly) but we have a King here with us now so I think once he gets filled in and knows his way around a bit better he will have a pretty loud roar. It's needed! We must advocate for ourselves and not just accept that this 'team of doctors" is going to do it for us. They don't.
Sleep you ask? HA!!! I have found a good stiff drink in the evenings helps though. Last year on one of the Blah-Blah Sisterhood weekends (for those who don't know, I have 3 sisters and a brother in my family. My sisters and I started to do long weekend get aways together 2 years ago at a lakeside camp. We now gather 2x/year. I termed us the Blah-Blah Sisterhood and it has stuck, because it's appropriate!) my sister Jayne made a drink with whiskey, gingerale and an orange wedge squeezed in. OMG, they are GOOD. While Donna was here she was making us Manhattans (yes, I've lost my drinking buddy as well) but one night I made her this whiskey ginger drink. Donna now calls this drink the "Lellopalooza", and this has stuck, because it's appropriate.
I've had my "meds" after a very up and down kind of day and I'm off to bed.
Thank you all for being out there. I know it's hard being in the wings but we honestly feel you there and it DOES buoy us up on days like this.
Loving you all back,