Sunday, April 19, 2015

April Showers

Kiera is my first April baby.  Sometimes I look at her and she takes my breath away. On my ugliest of days, on the days I try to remember what it's like to feel beautiful- I look at her and find it. Despite being told her whole life that she is beautiful, if she knows it, she does not let on.

For her birthday she wanted to go shopping for some new clothes. Shopping is not something I enjoy.  Yet that is precisely the purpose of a gift. We left in the morning and made several stops. Oh to be 14 again. You could not pay me enough to do it again. I remember 14. It hit me with a vengeance one morning. I was 14 when my brother was diagnosed with a brain tumor. That year is clouded with a comfortable blurriness. Girls are mean. I never felt like I could fit in without sacrificing myself and I refused to do that. I would take long walks and spend hours and the phone with the few good friends I had. I always preferred one good buddy to being in the crowd. When you see cancer sucking the life from someone you love- the loneliest place in the world can be a room full of people.

We found Kiera clothes and I truly enjoyed spending this day together, just the two of us.  A quiet lunch. She even helped me grab things for Easter then rushing home to quickly sing happy birthday and send her on her way to work lights for PACK's production of West Side Story.


We currently go from one event to the next. I cannot focus on more than one thing at a time. I could blame chemo, but I think it's just life. I no longer can multitask. I miss it.  The next day we painted eggs. The whole family gathered around the table for an hour. These moments are hard to wrangle. In them is perfection. Messy, stressy and totally perfect. Even better was the next day when my mom suggested the kids do the bunny hop. And they were such good sports as Phil and I laughed hysterically and would call cut and make them do it again. These are the impossibly goofy and fun moments that make us- us. 

video

The day after Easter, it was back to chemo.  The chemo bay has been very busy. I sense the underlying politics of the system and it's hard. The nurses are wonderful, and very good- but very busy and expected to do too much with a small amount of space.  We waited for hours for an available chair. It gets frustrating. I understand what's going on and sometimes you just have to wait your turn. Every time I offer a comfy chair to someone who might need it more and every time they tell me to stay put. One of the nurses finally explained to me that they try to balance It's also frustrating to know how it works- I know that once I get my blood drawn it will be another 2 hours before the results are in and we can start my infusion.  We met with my oncologist- who is keeping pretty close tabs on me.  I appreciate it, but I don't like it.  We went over my brain MRI results. I never got a call- which in our world- no news is good news. We hedged the bet slightly by having a friend look up the report. Overall it's good- we hoped for stable and we got "improved". The big tumor shrank about half a centimeter. So now we do another PET scan(Probably in May) to see what the rest of the unruly spots are doing. I think my onc suspects Kadcyla is not going to work for long as he already threw the name of another chemo into the ring for me to research.  It's called Ibrance and the trials had such good results they are fast tracking it.  He also sent tumor bits out again- this is the 3rd time(hoping the 3rd time's the charm) for genetic testing. This is is real life personalized medicine in action. It would have been nice to be able to do this 2 years ago and know if and what chemos/etc would have the best chance at working for me. BUT that is not how insurance or the system is set up. So we have to travel down the road and exhaust a few possibilities before we get to try to streamline the process.

Chemo week was also the week of the Variety Show at PACK. That will get an entire post on it's own....It was fun and emotional and really reminded me how 1 person can make a difference- one pebble- lots of ripples kinda thing.

The next event is Bella's birthday. Tomorrow. We celebrated yesterday since Phil is on a 24 hour shift into tomorrow.  She also got to pick out a bike and opened her birthday present from Grandma Connolly- a mermaid tail like Lily's.  She took it for a spin at KoOlina and Lily even let Kiera try hers on.  And although it's busy and I get tired easily- I'm grateful for each of these moments. Each birthday we celebrate, each excuse to go to the beach and enjoy the nearby beauty that day to day operations don't always leave time for.  This week I hope to partake some more with one of my dearest mutant friends who is coming to visit.




Lily Kay Monkey

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