UPenn

hey- this wasn’t in the brochure!

nikkicuc 7 Comments

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It’s been a long several days here in the window.
not exactly how we planned on starting our summer vacation.

One thing this horrible disease has given us over the last few years is a perspective on what’s important to us individually and as a family. Time by the water is IT for us and it’s a hard expectation to drop, that well get another summer at the beach, life as normal. Surfing, sailing, clamming in Chappy, it all seems pretty difficult right now.

Dean is fighting off some nasty pneumonia this week – not want you want to be doing the first week of summer vacation. We’re in good hands here at Penn, the best our city of brotherly love has to offer. That said – it’s been a week of first experiences too -ambulance rides, extended hospital stays and trying to navigate the waters of the next several weeks. The girls have been transitioning from school to summer with a brief stop at soccer camp for G. Their sailing season has started and what is typically a challenging week under normal circumstances, has proven to be even more difficult with the two of us grounded here in Philly, held hostage by IV antibiotics, shortness of breath and recycled air. Thank goodness for family and friends who know just what you need before you even do – thanks everyone for the Animo deliveries, 5 star takeout, fresh baked cookies, soccer camp runs, sailing help and prayers. Fortunately, Superman is feeling relatively well, considering. It’s incredible to look at the scans of Dean’s lungs, and see the war going on in there. It’s hard to figure how he’s even getting any oxygen, and how theres no fever and no coughing. Just another super power, his ability to put mind over matter. It’s a lesson we could all take from Dean’s fight, how keeping strong in your mind and your intention. It’s proof that our thoughts can carry a shit ton more weight than we think.

So thats where we are at 4:44 on Wednesday morning – with the INTENTION of getting well enough to bust out of here and get back to the beach, toes in the sand with the waves crashing in – ok we live in New Jersey – so maybe waves rippling in. We’re about to head into what we refer to here as the season of “summer flats” where you stand by watching the swell forecast with the hopes of catching that storm that brings SOMETHING rideable your way. Not ideal for the big boys, but perfect for the kids and for the stand up paddles. We’ll sit at Waverly Beach and watch all the girls goof off in the water, create those special bonds with their summertime friends and practice their cartwheels. We’ll rest, and recuperate while we live in the window of our very favorite season at home.

We hope you’ll do something memorable this summer too- take some time off, get your own feet in the sand. Life goes by quick, and kids grow up fast. Stop and smell the roses, live a little, love bigger, and those dreams? those goals? they’re happening now. LIFE is happening now. Grab it, chase it and create the life you want to live, don’t wait! DO IT NOW DO IT NOW DO IT NOW.

Look sharp while your in the machine

nikkicuc 3 Comments

Time for scans. Time to get dressed.

My shoes. I like to wear my sharpest looking shoes. Here’s why:

I wear my sharpest shoes to remind me I’m not as sick as these clothes make me look. It helps me to try and dress well. It makes me feel better, better about myself, better about what I can do, what I can accomplish.

Penn is a great hospital, however it’s a city hospital. Therefore the gowns you wear for the tests are “city”  – too big and don’t fit, probably 100 years old, open in the back so you ass could hang out – a great feature. They have you wear two gowns, one in the front and one in the back, so you ass does not hang out, wow that’s thoughtful. Rather than get new gowns or a robe style like at Sloane Kettering (they have a ok solution, fancier for sure, that works better)  just throw two at it, fuck it, we’ve got billions of them. I can hear that discussion/presentation in the meeting, showing the metric, explaining the cost benefit to the solution, totally disregarding the patient. That’s not important to them, mainly because there not in here week after week, having to put these two gowns on and look sick.  Seriously, if your were not sick before the gown – put one on.  You’ll feel like a sick person.

Waiting Room. Shit. I never talk in the waiting room. And here is why:

Talk about ports with the guy next to me? Here’s how that conversation goes:

“What is a port?”

“Its an implant in your chest the connects to your carotid artery.” – nice.

He’s older but cuts logs and active. He doesn’t like it. Then the guy across joins the conversation. Another guy is asking why he needs to have a line in today, he is giving blood tomorrow, he’s confused.

They’re not extracting from that line they’re pumping shit in. And oh yea – the guy with the port has a line in his arm because he’s having a pet scan. So I guess the nuclear shit can not go thru a port. Less of a reason to get one.

Back to the guy across. He proceed to tell us how he will check out. He says not like his dad did – alive too long it sounds. He explains he will go off the chemotherapy, pump up the morphine and end it himself. He’ll make sure there is no mess too. That’s thoughtful. Fuck!

Yeah- never talk to the people in the waiting room.

Back to my shoes –  of which I’m not wearing.

There is a new protocol to follow for scans. They give you these socks. No fancy shoes. Low budget airplane socks. Sick looking socks. With grip on them so you don’t slip. Functional in that respect but sick looking no the less. Ugh. I could have shoes on and probably should. However today I followed all the rules and have the socks on. Trying to maybe make it feel like the beach. Toes in the sand. Barefoot waking. Ha. Well with the neuropathy effecting my feet and hands, numbness and cramping, limiting my use of my hands and feet and making my feet feel like blocks of ice these socks kind of help. That’s great. Frozen feet. Like your walking in the snow with no shoes on. Not at all the beach. My hands -challenged even more to make them work properly. Ugh

I compare san days to flying, except you’re not going anywhere good. No sunny warm beach, or cresting waves, no european coffee, or family getaway. Just you, in your head, wondering how this is all going to turn out, sharing the same space as complete strangers but even worse because they are fucking sick and some really look it. I try very hard not to look or act sick. If you look good, you feel good, and if you smile and are nice, and your bag fits nicely under your seat, maybe the flight attendant will bring you an extra drink.