Tuesday, October 21, 2014


We just wrapped up the girls' production of Little Mermaid Jr. It was fabulous- and since it is my favorite of all time- I could have watched it over and over and over- but all good things must come to an end.  Kiera played Carlotta, a jellyfish and a lilypad. Lily was Arista, a mersister and a lagoon creature and Bella was a sailor, an unfortunate soul, and a butterfly.

They all had an amazing time with this production and with the cast and crew. Other moms would come and tell me how sweet they were( I try to avoid back stage- it is far to chaotic for me- which says a lot since our day to day livelihood is anchored in chaos.) One mom said Bella would rally the other sailors for a group cheer before each performance.

So on the Sunday evening after the last performance, Bella curled up in my lap and sobbed and sobbed and sobbed. Now Bella is just discovering her dramatic side so part of me wondered if this was overacting or actual heartbreak. Either way- I was glad it had been such a good experience for her that she would miss it.  Yet the next day I woke up with a headache and her nose was stuffy. Bella gets weirdly emotional before she gets sick. The little petri dish had snot bombed all over me! And here I was with 3 days to get everything together for a mutant meeting in Portland.

I chugged OJ. I took extra vitamin c and zinc. I rested and drank stress tea.  And I knew Monday when my head throbbed and my throat tickled that the petri dish had done it again. On Tuesday, I got the kids off to school and climbed back into bed. Somewhere around noon, I felt a hand on my head.  Phil grabs the thermometer and I try to yell no, but that would require energy I just don't have. 102.3. GDMFCSSOB. Not only have I lost a day of prep for the mutant meeting, I now am getting carted into clinic for a fever work up.  The up- side is that Lily has her endo appointment at 2, so somehow Phil is getting a 2 for 1 Tripler deal.

As I am trying to pull clothes over my hot shaky mess of a body- I get a text from my mom. Her mom radar is spot on- again. I text back yet in the fever haze- never hit send.  By the time I get to the hospital I hear my phone pinging and buzzing- apparently she appealed to the mutants to see what was up and they are now rallying in force. The nurses draw blood from several locations and plop me in a wheelchair to send me down for a chest Xray. Phil and Lily finish up with her appointment and come find me shivering in the frosty annals of radiology. Finally they call me back and the tech apologizes for the wait- she's the only woman around and didn't want to subject me to the boys.  She helps me out of my shirt and points out that I am seriously feverish. Yep hot mess- that's me. We finish and head back to clinic. I just.want.to.sleep. My counts look good, my onc comes in to talk with me.

We agree that it's probably just a virus, we do a strep swab just to be sure. He wants to know about this trip- THE TRIP- Mutants take Portland- Mutant mixer- Hugging mutants-Mutlandia and I can tell he is not keen on me flying. I ask him what his worry is- he says well- it makes them look bad to put a sick cancer patient on a plane. I laugh- OH I though you were worried they would freak out and think I had Ebola or something. His eyes get wide- I didn't even THINK about THAT. Oh great. Not to give him another reason to keep me locked down. He does not think I should go.  One of the team comes in and helps problem solve. We all decide that the decision doesn't need to be made right now- I still had 24 hours to miraculously lose a fever and open some airways. Lily finally gets to check out the chemo bay- and is pretty impressed with the little tvs.  We finally get a few scripts and head home.

By Wednesday the fever is gone and the congestion is trying to break. I lay under my neighbor's steam machine slathered in vicks.  Mutants are checking in at regular intervals. I can breathe out of one nostril- that seems good enough to fly in my world. Phil keeps asking me what I think, I keep asking him what he thinks-I am getting concerned texts from family and mutants alike.  My neighbor pops in and out and it hasn't even occurred to her that I might stay-plus she knows me- you'll get more rest on a plane and in a hotel room than you will here with 4 kids she says. Especially with the storm coming.  And that's true- my husband in his constant efforts to make me comfortable had gotten us first class tickets. Wait, what? Storm? Yeah- there is a hurricane heading towards Hawaii.

These two days were supposed to be dedicated to final meeting prep- and as somehow seems to happen with LFS and life in general, those days were pulled out from under me. My heart hurts so severely at the thought of missing my friends, I can barely breathe- but that may just be a virus.  One of my very dear mutant friends will not be joining us at the meeting because shortly after she filed some of our incorporation paperwork she was schwacked with a cancer diagnosis. As she lays recovering from major surgery- she texts me comfort- when she is personally feeling the loss of not getting to hang out with all of us after being the driving force behind bringing us together.

My cousin - who has been an advisor, a friend and an inspiration during some of my roughest times- chimes in that there is no stress- I can cancel at the eleventh hour. But I don't want to cancel. I may not be much use for a couple of days- but I'm pretty sure Phil needs this as much as I do. SO I throw a few items in a bag taking more time to make sure all my medications are packed than toiletries. And we head for Portland. Because this is what it's like Living with cancer, Living with LFS and just LIVING. I could not do it without the support system I am lucky enough to have around me- and sometimes the best medicine is just Living.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)