Feels Like Home

I have this habit lately whenever something unfortunate or surprisingly crappy happens, I exclaim "Damn Sam!" which is a Ryan Adams song. Not even one of my Top 10 Ryan Adams or Whiskeytown songs but memorable none the less. The lyrics are pretty corny too…

“As a man I ain't never been much for sunny days/ I'm as calm as a fruit stand in New York and maybe as strange/But when the color goes out of my eyes, it's usually the change/But damn Sam I love a woman that rains”

Sylvie’s breathing was heavy last night—like she was panting and out of breath or about to vomit in her sleep. And as usual, she was up all night demanding ‘bubble water’ and ‘Mommy drink.’

Michael and I got up around 5 am and alternated sleeping with Sylvie so we could feel her body temperature rise.

Regretfully, but with no choice, I sent notes to the office that I’d be working from home. Even if Sylvie did not have cancer, there’s no way I would have left her today. And I'm absolutely confident that the folks at my office would not want me there either. Ultimately, Sylvie's intermittent hospitalizations are constant reminders to Michael and me that our family, above all, comes first.

Sylvie's temperature reached 100.5 so we played the waiting game all morning.

Tracey, who is Sylvie’s physical therapist, came over at 9:15 and it was evidently clear that I could not be in the same room if they wanted to accomplish anything. So Sibel, Sylvie and Tracey played games in order to assess her strength and try and trick her to move a little. Tracey and Sibel had Sylvie bouncing on the couch a little which is pretty big progress. There would be no walking today. Tracey and I talked afterwards and once again, she insisted Sylvie is strong and knows how to walk so it’ll just take a little time. Then she asked me, “What’s with the bats in Sylvie’s room?”
“Bats???” I asked having a feeling I already knew the answer.
Tracey continued, “Sylvie told me that Daddy slept in her bed last night and got rid of the bats in the room.”
Hmm I thought…”Did she then bring up the mice?” I laughed and told Tracey that Sylvie is referring to movies “Barbie and the Diamond Castle” with the bat and “The Nutcracker” with the mice or rats.

Tracey also said that Sylvie felt very warm. Her legs and torso were heating up. This time, three thermometers all registered temps lower than 98. I called Annette. She said come in soon.

After applying Emla cream to Sylvie’s port site, I finished up some work and off we went to the “good hospital” according to Sylvie. She was extremely lethargic. We ran into Jette and her dad and Sylvie perked up enough to give Jette a hug. It made my day seeing Jette who is always so cheerful, at least to Sylvie and me.

Dr. Halpern held Sylvie’s hand while Suzanne accessed Sylvie’s port and Annette & I talked about Sylvie’s symptoms. I almost felt like I misjudged and that we should have stayed home. Dr. Halpern initially said that this really could just be symptoms from chemo. Until the labs came back and not only was her magnesium even LOWER than the previous three days, but now her Potassium is off, too. So much that he requested that Sylvie get admitted because it’s easy to monitor and treat her crazy electrolytes while she’s here.

Truth be told, Michael and I were going through extreme measures this week to avoid Sylvie being admitted since I was returning to work but it’s probably the same with her being here as opposed to spending six to eight hours in the outpatient clinic.

I ran home to do some work, jump on a conference call, run to the pharmacy and pack up stuff to bring back to the hospital.

The doorbell rang, Lucky went berserk and as I approached the front door, I could see some kid in a white t-shirt with navy numbers running away. I opened the door and saw a whole bunch of kids hiding in the shrubs between my house and my next door neighbor’s Dave & Diane’s house. I yelled at them for being assholes (sorry Mom but I've been profane since about the third grade) and hoped that Mike Yachimski saw the episode but he was very focused on weeds or shrubs or something like that. I ran upstairs, finished and email and then the Clint Eastwood in me took over. I put on my brown bedazzled clogs, got in my dented, trustworthy blue Pathfinder with 156000 hard miles, lowered the windows and cruised around the block. Sure enough on Waiku, just around the corner from my street, the gaggle of prepubescent idiots were gathered in a driveway. Until they saw me and tore off behind a neighbor’s house. A college kid home for the summer was mowing the lawn so I asked him if he knew them (NO) but to scare the shit out of them and that I have a toddler with cancer at home. These little assholes have no idea who they are f$&^#&# with. I am a fierce, vindictive little person and they are going to be grounded or mowing MY LAWN all summer when I figure out where they live. Michael told me to chillax and because he doesn’t want our house or cars to be egged for the next 10 years. OK so maybe I’ll just make them read Princess books to Sylvie once a week. If any of our friends and neighbors know who they are…

I only have until Friday night Shabbat to hold a grudge plus it’s very un-yogi of me!

Ending on a positive note, I'm lucky to have worked with a few artists who I consider to be very dear friends and in turn, they allow me to be an up close and personal fanatical fan. One of them is my friend Chantal who just played a show at Hotel Cafe in LA this week with the proceeds going to Strides For Sylvie. Over the years, I've come to know causes that she supports and songs she has written about people, including children, who touched her life. When Sylvie was first diagnosed, we talked or cry-talked and debated a song of hers called "M" which is about a little girl and whose lyrics have always brought me to tears. We have come a VERY long way and Michael and I are so incredibly and positively grateful that she allowed us into her performance this past Monday night. I only wish I could have been at the show screaming song requests.