noun
- an instance of giving off something such as a liquid, light, or smell."a massive effusion of poisonous gas"
- MEDICINEan escape of fluid into a body cavity.
- an act of talking or writing in an unrestrained or heartfelt way."literary effusions"
LFS. Family. Camp. This was years in the making. An idea. A wish. A dream.
2019. Trish said. This is it. We are gonna do family camp.
6 board members became 5. Then 4. Life. LFS. Each of us tackling obstacles, health, business, family. Loss.
Montana. Camp MAK-A-DREAM. It's a bit expensive to get to, but totally worth it Trish said.
The Journey to Living LFS's First Family Camp began. Me spewing ideas, visions. A year and a half until camp became 6 months away, 6 weeks away, 2 weeks away.
I would wake up at 3am. Unable to breathe. Alternately excited and terrified. So much could go wrong. But we are mutants. We know how to turn bad into a good time. There is strength in numbers. Plural. More than one.
1 week to go- both girls get colds. I have a cough. I "rest" by organizing and reorganizing what I need for camp. Bella is giddy, checking weather in Montana daily, hoping for snow.
I am impossibly excited. and nervous. I am excited for the girls to meet others who know this crazy existence. I know how life changing it was for me to find my mutant tribe- and still I did not predict how effusive the impact would be on Lily and Bella in different, yet personal ways.
After a night of flying, Lily getting airsick, having an adrenal crisis and me failing miserably at finding any fun in it- the clouds cleared as soon as we were greeted at the airport by one of my favorite mutants, Mills- who transports us to one of my effusively happy places. House of Snark and Groot.
I'll be honest. There are MAJOR gaps in my memory. But I remember how being there makes me feel. The girls(BEE LAAAA) came alive. She and Mills not only share a birthday- but a really inappropriate bizarre sense of humor. Mutants are caretakers by nature, each in their unique way. They are my sistahs. When I am with them, I know things will be hectic but handled.
We make our way to Camp, sardined with blizzards worth of items and laughter. I am beyond grateful for the energy and efforts of the team. I feel perpetually exhausted but happy. Old friends. New friends.The outpouring of love and hugs takes my breath away. I assume it's the altitude.
The families are now MY families. After a day, the energy is hypnotic. This. This is what I wanted. For me. For the girls. For anyone who felt alone in this genetically mutated life that landed on us by happenstance. SO much laughter. Therapy over art and food and campfires. Getting more from the experience than I could ever give. Adventures like archery (talk about targeting tumors!)and ziplining, draw out even the most antisocial BEEE LAAAs.
Learning from a carefully crafted team of counselors and professionals familiar with LFS. The kids proffering their veins and blood to help research that promises to make living with LFS easier. Seriously- how awesome is a group who happily will get a poke during CAMP? And the amazing group who did it for us!
I walked up the hill, my lungs burned. As a Colorado girl, this was more than altitude. I couldn't catch my breath. Damn. Damn. Damn. I wanted to hike up the mountain with the group, yet here I could barely make it from cabin to cabin. Lily started hovering. She knew. She said I was breathing funny at night. I think she'd ask me 53 times a night if I was ok. Yeah I'm ok.
We closed out camp with an amazing talent show, Lily sneakily getting Bella to perform and everyone walked back to their cabins, the pathway lit by lanterns in honor of those we lost. The next morning, a welling hangover. Mutant fun hangover which led to sudden withdrawal. The comfortable fuzziness enveloping us as we prepared for see ya laters.
Our flight the next morning was obnoxiously early. Lily, forever the planner was not satisfied with my laxidaisical attitude towards the day of flying. We somehow made it through- and I slept most of the flights. Which is not something I do. We arrived in Hawaii and the only thoughts perfusing my brain were a shower and my bed. And to breathe. I was coughing more and the pressure seemed to be increasing. I had thought about bumping my chemo appointment for the next day, but it was looking like I needed to be seen.
I arranged for the man-child to drive me to clinic after his class. I called clinic to let them know I was kinda having a bit o trouble breathing. The clinic was swamped and I could tell they were feeling out how bad I felt. In the end we agreed I'd page the doc when I got there and I could head down for a chest xray.
She took one look at me, shook her head and said I was kinda gray. I disagreed and mentioned that although cold, it was sunny in Montana. At that point she started moving fast, she made the jump to pulmonary embolism. I didn't think it was that, but I had flown and honestly I wasn't sure which was worse emboli or toomahs? She personally grabbed my vitals(not great), a wheelchair and off the the ER with me. Phillip just kept shaking his head. This is not how I thought today would go either. After tests and more tests and a couple more tests. We ruled out pulmonary embolism and were leaning towards pleural effusion.
The pleura line the lungs, sometimes fluid collects there- due to infection or you know, cancer. It causes that whole I can't breathe thing. effusively. After some oxygenation and antianxiety meds, the doc agreed I could go home if I returned the next day to see the pulmonologist. I had to maintain a certain oxygen level while walking around the ER in order to get my pass. This wasn't like I was trying to cheat the system - I kinda like breathing. I knew about pleural effusions from my various cancer support groups. They can be inoccuous or well, noccuous.
I felt pretty yuck. I kinda just wanted to sleep but then the coughing and the gasping. We found our way back to Tripler the next day and got to introduce a nice young pulmonologist to what happens when Jen is de-oxygenated, stressed and left in a room with little entertainment. Fingerless gloves. And snide comments about how I know all about stuff and stuff, you know cuz grey's Anatomy. Then random quizzes on LFS. Which he said probably really wasn't a cause here, to which I explained- zebra unicorn pegasus theory. We grow weird. Don't assume it is or isn't. Or in this case don't effuse it is or isn't.
Normally I think I'd be more panicked about a big needle(sorry they use the term CATHETER- less intimidating? and oh yeah despite being asked publicly 53 times if I could possibly be pregnant....no, one needs to have certain parts for that-then suddenly a receptionist holds up a post it with "Pregnant? Yes or No?" ) wt actual eff?
Anyhoo- the thoracentesis itself was fairly quick and anticlimactic compared to the whole drawn out suffocation act I had going on- so yay. There was fluid, and coughing and more fluid and breathing and a little soreness but mostly breathing. Look away if you don't care to see that Jen's pleural fluid looks just like pee...I think the doc and nurse were taken back that I wanted a pic with my fluid, but I mean people photograph EVERYTHING these days. Effusively. Plurally.
Getting home, my lung readjusted to having space to do it's thing. There is some fluid in my other lung, and chance that the left side could fill back up but we deal with one step at a time. He removed over 800mL of fluid- sending off multiple containers to see if we are dealing with infection or cancer or what. For now I feel better. I can take a deep breath and look back on the camp experience with a clear mind and full heart and a effusive tribe of superheroes.
You really are something girl! Keep us in the loop! Love you! ❤
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ReplyDeleteYou amaze me! So inspired by you! Xoxo Kortne
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