I posted about my MRI the other day. We have the results! (I guess there's no surprise they were good since I used the exclamation mark.)Read More
The Napkin Notes Blog
Today is infusion #13.
I've had a kidney removed along with a 13 cm tumor.
I've had an adrenal gland removed with a 2.5 cm tumor.
I've had 77 scans.
I've had 1621 days of daily chemo.
I've had renal cancer metastases on my liver, my other adrenal gland, my right lung, and my brain.
I've had gamma knife radiation brain surgery.
I've had 12 chemo-immunotherapy infusions.
Today is my one year anniversary of immunotherapy
Today is infusion #13. 11 more to go.
I love knowing numbers but I honestly can't count how many napkin notes I've written to Emma. Thank goodness, because it's not about that. It's about building that connection.
I woke this morning at 4 AM and two things were on my mind:
* Holy crap, it's early!
* In your rush to get to UVA, don't forget Emma's note.
Emma's almost 20 and I'll continue writing notes to her as long as she wants me to. It's a true blessing to have made it this long that I get to write notes to an almost 20 year old!
The universe works in mysterious ways. As I was waiting for my first appointment (brain MRI) I received a message from Ainura in Kazakhstan.
I’m tired and hoping for a nap this afternoon.
Thank you all for the kindness, the love, and the support for the last 2833 days.
Pack. Write. Connect.
It’s time to write one note. You already have the basic tools. You just need a pen and some paper, a postcard, even. How many words could you write which would really make a difference anyway? (It’s less than you think!)
It’s time to write a note, or if you’re brave enough, a whole letter. It’s time for the Napkin Note Challenge.
A note (or letter) is such a beautiful thing. It’s a snapshot in time and something tangible that the reader can hold on to forever. It’s something besides bills and junk mail to fill the mailbox.
And here you are, pen in hand with a notecard in front of you. What’s next?
1) Greeting - It can be as simple as “Dear ______” or even just their name.
2) Date - Put the date somewhere, even on the back. It’s your snapshot in time and this is the way to do it.
3) The Note - Just write. It’s doesn’t have to be perfect. Start off with something like, “I was thinking about you.” “I wanted you to know how much I appreciate your friendship.” or “I was thinking about the time when you and I ______.”
4) The Props - Time to prop up the person reading your note. Say something positive like, “You are amazing.” or “I can’t wait to see you again. You’re so awesome.”
5) End - End with something simple. “Much love, _____” or “Thanks for being you, ______”
Here’s the challenge. Write one note before the end of the weekend and put it into the mail Monday. There’s no hashtag, no posting pictures on social media, and no humble brags about your awesome note writing skills. It’s just you and the recipient.
I am grabbing my pen right now.
We always knew this was a possibility. Kidney cancer, when it metastasizes, can often metastasize to the brain. It also metastasizes to the lungs and liver. I am batting 1000.Read More
I had some serious anxieties leading up to the brain surgery yesterday. Think Gamma Knife radiation. Think brain surgery. Think visual cortex.
I was worried about:
What if I died?
What if I went blind?
What if I had brain damage from the surgery?
I was hoping for:
Gamma radiation - could I be the next Bruce Banner (Hulk)?
If I go blind, could I be the next Matt Murdock (Daredevil)?
What if I came out of surgery being able to speak Portuguese or super sight?
As it turns out, none of the above. It was pretty boring overall. I’ll run another set of scans in the next 6 weeks or so, and we’ll see what we can see.
I am declaring September 6 International Star Wars Shirt Day.Read More