Wednesday, February 28, 2018

Big Dreams

Sleep is an elusive thing. Between the stress, the steroids and other factors- my brain does not want to shut off. Unless of course someone is asking me a question or I have to remember a schedule- blank city. We forgot not one but 2 of Bella's tap classes last week. By we I mean her. We are to the point they know mom's memory bites and they are responsible for remembering. In her defense, she did have a cold and truly benefitted from the down time and not infecting others.

After brain surgery- I had wild dreams. Narcotics will do that- hallucinations really- auditory, visual. I'd wake myself up talking to someone and see they were not there. I am not a fan and was relieved to get off the crazy meds. Maybe once or twice a week do I sleep deep enough to dream. It's like visiting an old friend, sleep and dreams- oh how nice.

We are on the cusp of March. Lily is my calendar girl. She is a planner. For 2 years, she's been planning to shave her head again for St. Baldrick's. Once again, I wait and see what time will bring. It brings Lily with even more conviction and desire to help. The girl has dreams. She loves people. She loves raising money for cancer research. As she is turning lucky 13 this year, I gave her the password to the St. Baldrick's account and helped her get her page for this year set up. I showed her how to check for donations and to send Thank yous. She has been practicing lettering and had some incredibly generous donations- so she spent one weekend making thank you cards.

2017 was a rough year for loss. We lost some very special friends and it feels like everyone we know is facing tough battles. Lily watches me intently and asks- how is your heart? She knows some days it hurts a lot more than others as we wade through the feelings. Complete gratitude she and I are here together, shock and anger that wonderful humans are not. She sings. She reads. She feels. She plans her shave, she shares her dreams at school and her teachers have been incredibly supportive.

The first year she shaved, she did it for me. The second year in honor of sweet angel friends we had during treatment. This year she wanted to shave in honor of her mutant buddies. Li-Fraumeni Syndrome gives us faulty tumor suppression, but truly incomparable friends.  This year she shaves in honor of Ramernation, specifically Brent and Lauren Ramer. Lauren is about to finish chemo for her 4th cancer, 2 of which were brain tumors.  Brent passed away December 30 at the age of 18, after many years of battling different cancers. Yet it is important to Lily to shave in honor of all her mini mutant buddies. Kids like her, Brent and Lauren whose genes may be faulty yet they leave an exceptional impact on everyone they know. She shaves so we can find better treatment and cures so kids can realize and live their dreams. A million dreams.

Please Join Us on April 22, 2018 for the Shave! No shaving required! Show your support for Lily, her mini mutant buddies and all kids who deserve the chance to live their dreams!! You can donate , you can share her link, and there even may be an event near you!

St. Baldrick's HAWAII

Tuesday, February 20, 2018

Urgent Care

When you are diagnosed with any life threatening condition, or even think you have a condition- you feel the sense of urgency.

Urgency to live.

Urgency to love.

Urgency to get things in order.

Or to get the chaos managed in a semblance of well- managed chaos. The months leading up to my surgery were filled with the urgency. After Lily was diagnosed, urgency to fill our lives with as many memories as possible. Living with LFS, knowing life is short- being reminded by every lump, every treatment how impermanent we all are.

Did I want to leave my children memories of me sitting at the computer? No. So the book goes unwritten. The stories are written in memories.

Did I want my husband to regret the times away? No. So we feign normal. We fall back into routine, with prescheduled reminders of how quickly it all will change. Not CAN change. It WILL change. We don't know when or how. So we urgently persist. We urgently live.

You pray for normal. Then normal shwacks you upside the head- burying you under your new normal with normal normal on top. It comes in the form of a kitchen full of maggots, car trouble, garage trouble, health trouble. Kid trouble. Politics trouble. And my soulmate, my better half reminds me- this is normal. Deal with it. He leaves early every morning- his escape to another normal- with hundreds of other normal problems. Urgent in his world is very different. Much bigger problems. Just as it isn't always noticed when you do a good job, when others don't do theirs- it trickles down. It is noticed. In the form of maggots and brokenness and trouble. So you triage. The squeaky wheels get the oil. Unfortunately there is far too much squeaking and not enough oiling.

Phillip has been complaining of headaches. Then he had bloody noses. Kiera's back is bothering her. They both have MRIs scheduled, which is a task in and of itself. Which reminds me we are due to check on Bella's arm. Which reminds me I am due for scans. Lily always has something- but for the moment is the least urgent of them all. When things move fast, it is scary- things are rolling along and we are hoping to be dealing with normal stuff.

When a friend asks which day is busiest, she'd like to bring us dinner- I gratefully say any day is fine- truly- Thursdays are traditionally take out or leftovers if there are any. I am grateful when she brings dinner on Thursday. I think the kids are almost through the Costco sized Ramen. Which I keep telling them isn't real food and we need to go over some basics. But then something urgently needs my attention and well, you know, normal.

When Phil texts from work on Friday that a good friend is in town, do I want to meet up and maybe stay in town? My gut reaction is- dear God I am so fucking tired and I'm pretty sure I will be no fun. But I say yes, because you know- urgency, we don't get many nights out- the big kids are working, the littles want nothing more than to eat pizza while watching tv- so yes, yes I want to do something normal.  And then your very good friend meets up for a hug and hands over a key to a hotel room and sends you on your way to dinner with promises to meet up later for a drink. So you have an incredibly lovely dinner with your amazing husband and you remember when this was somewhat of a normal thing and I am so incredibly grateful for those somewhat normal times and the urgency we had to have them. I am grateful for the wonderful friends who continue to support us knowing we really mean it when we say we owe them and also know the debts will probably go unpaid.

It was a great reminder that self-care is urgent care. Years ago I was running ragged trying to get the nonprofit living LFS in order, not wanting anyone to feel the loneliness of LFS if it could be avoided. Friends rallied to my side when tumors reared. Urged me to take care of myself and when I wouldn't, made sure they did. Each one knowing urgently how much self care I needed because they too urgently needed care. I hate not being able to be the friend I want to be. It gets lonely. The self-care thing. Sometimes the positive side is elusive. I am so grateful for the friends who have become family. Who check in and keep me from checking out. I am grateful for my kids who remind me hourly what normal is and daily what exceptional is.

So I stack our appointments, to limit hospital time where we can(flu anyone? no thank you) for March 5th.  I'll wait in the chemo bay while the bigs get scanned and meet with my oncologist. My scans and Bella's scan will pend appointments and urgency. One shark at a time. Hopefully they are just fish. Then we keep swimming- for now I am Grateful for the boat and that I can wave to friends nearby even if we aren't always in the same boat.

Thursday, February 8, 2018

Eric's Garage.

My last memory of my cousin Eric was his laugh, as he sat on my dad's lap in the tiny Toledo airport shortly after New Year's 1994. The next time we'd fly through there would be for his funeral in April, then again in June for my dad's service. He is celebrating yet another birthday in heaven today.

When he was just a baby, I got to "watch" him as the family gathered downstairs. I would prop him in my bean bag until he would fuss- the pick him up because clearly he needed me. A few years later, when they visited us in Denver, we were family but almost strangers- no longer being able to see each other weekly or for birthdays- but sometimes through videos sent back and forth and pictures. He had a broviac for chemo and while they were there- I was the only one he would let clean it. He was such a wonderful little butthead. It meant a lot to me.

Of course I wonder what he would have accomplished had cancer not taken him. I know for sure how much we all were changed for even having him for those brief years. I had already gotten accustomed to the distance since we had moved, but for my cousins- the much wider gap left for them would never be filled. Pirate ships, nachos, crazy pranks. Goonies Never Say Die.

Bella has been on a burrito/taco/nachos binge. I think of Eric a lot. I worry about my family. Despite the years, you learn to move around the grief. It is always there.  I also remember Phillip's brief stay in the hospital as Pancreas Boy and promises of Nachos to get him through the week of feeding tube while his pancreas rested. A simple, common thing like nachos- something you wouldn't think could completely wrench your heartstrings. Sharing a beer with my dad during Monday Night Football, stealing his olives from his martinis. Soon he would put an entire swizzle stick full in his glass, just for me.

So of course the other night, in the midst of running back and forth- the garage refused to close. It's old, it gets overheated and just refuses. At first I would get frustrated and angry, now I'm just plain sympathetic. Phil texted he was on his way home, so I sat outside in the breeze and waited- surely it would close on the first try for him.

 The messages went like this:

 I of course had to text my aunt and cousin- that autocorrect named our garage Eric. My aunt reminded me his birthday was in a couple days. I knew it was in February- but honestly I'm terrible with dates. She also reminded me about the time Eric got his mittens stuck in the garage- hoisting him like a pirate ship jolly roger. So I got out my label maker and made a sign for our sign.

and believe it or not, we were out of margaritas, no rum to be found- so I soaked some olives in vodka and toasted Eric and birthdays and signs and of course to naming Eric's Garage- which has been working since- we'll see what today holds- Eric loved a good prank. Happy Birthday Butthead. 

Lily Kay Monkey

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