Birthday Fun!

What do you like to do on your Birthday? Whatever it is make sure you fit in the fun! 47 years young and each minute a gift, of that I’m sure. Along with work, you need to fit in the fun! Today I woke to a fantastic video the girls put together . We typically make them a Birthday video and they decided to surprise me with one! What a great way to recap another awesome year of LIVING!

Then off to work, Our standard Wednesday meetings.

Quick detour for a meeting with my Neuro-Oncologist to talk about some potential brain surgery. It’s fun to call it that – brain surgery. Thank goodness for technology – it’s a knifeless brain surgery called Gamma Knife. In Philly.  Which I’m now told I hold the record on with three procedures done and looking at a fourth. I wonder if I get some sort of metal or a plaque for that? Anyway…stay tuned for that.

Finally back to the fun, dinner with my girls tonight and a little shoe shopping! (see earlier post) I can’t wait. Birthdays are so much more meaningful now, and my mom makes the BEST cake!

The Fourth Nail…

nails

I think I found out what the fourth nail is for. (a placeholder nail that Eva gave me) Big scary shit over the last few weeks- the possibility that my NSCLC may have spread my spinal fluid. Apparently 50% of Lung Cancer patients end up with this as a secondary cancer – as if living with once cancer isn’t enough. (since resolved, phew! but read on.)

I’m pretty good with odds like that. I can usually beat 50%. Being the grandson of two gamblers has caused me to focus on odds numbers a little differently in terms of what they mean to me.

If in fact I do have the cancer cells in my spinal fluid they say that I have about 4 to 6 weeks to live. That’s way too short and I’m not digging the odds. Since were talking odds- here’s another crazy statistic. My particular type of cancer carries a <1% survuval rate 5 years out. It’s going to be a motherfucker of a number to beat but I will. It’s also why we don’t look at numbers.

And other nail: a 13th brain tumor to radiate. It’s been a while since I’ve had to go to Clevelad for Gamma Knife, and we’ve been so blesed. But, alas, the little mother f@#$&* is right there in the dead center of my brain. Thankfully, it doesn’t seem to be bothering anything, however it is more weight to carry around.

I’ve tried to steer clear of talking about prognosis and numbers- and Corey’s been very helpful in keeping the focus on beating the odds. However, they do creep in and can be very helpful in understanding what’s important- like really important in life.

I just keep in mind what needs to be done today and prioritize things differently, like remembering to drop off $14 at the school so Gianna get the shirt that she needs, that stuff is important. Second on the list is stopping at the hardware store so I can fix my wife’s bedside light, it needs some love.

Really important.

Just the other day, after more that 4 weeks of waiting, we got the news we were hoping for – no cancer cells in the spinal fluid, just one brain tumor! One brain tumor! Awesome! – Its pretty much like standing at the craps table With Sergio and Dante aAnd a table full of family and friends, and we just rolled the hard 8.

Wow, how my perspective has changed.

We’ll keep everyone posted as to when the prcedure will be scheduled. It looks as if we can stay here in Philly this time, which is great. Should take a good bit of a Friday but, home and back in action over the weekend.

A big huge thanks you all of our amazing doctors and family and most recently the Dean Randazzo Cancer Foundation (more on that here) who consistently bend over backwards to make sure I can keep living and doing. (literally and figuartively) I have the very best team around. (more on nails here)

Game On!

Look sharp while your in the machine

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.