Infusion #13

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.

Star Wars Shirts

Write a Note This Week

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.

Quick Thoughts on Brain Surgery

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:

1. What if I died?

2. What if I went blind?

3. What if I had brain damage from the surgery?

I was hoping for:

1. Gamma radiation - could I be the next Bruce Banner (Hulk)?

2. If I go blind, could I be the next Matt Murdock (Daredevil)?

3. 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.

If I Only Had A Brain

I had a brain MRI on Monday. I couldn’t help but think of this song…

“I could while away the hours
Conferrin’ with the flowers,
Consulting with the rain;
And my head I’d be a scratchin’
While my thoughts are busy hatchin’
If I only had a brain.”

— From The Wizard of Oz

If I only had a brain. I love words and wordsmithing. There are two ways to read this statement.

If I only had a brain – I am missing a brain, and I really need one.

If I only had a brain – I have more than a brain, and I wish I had just the brain.

Well, that’s me. I have more than a brain. Not much more, but there’s more in my skull than what I want or need.

So, I think that’s 7. Seven times a doctor has called me and told me that I have cancer. Seven times I have had to look at Lissa and Emma in the eyes and tell them that I have cancer. Seven times putting a treatment plan together.

I could handle this easily if I didn’t have to tell Lissa and Emma. That’s the most difficult thing I have had to do (7 times!) since 2011 (7 years!).

I know the Napkin Notes community. I know you feel for me. I know this is difficult news for you to read.

I can handle this.

I’ve got this.

(If my cancer life were a meme, it’d start with, “Hold my beer.”)

I shared something with Emma this morning. I asked, “Of all of the people you know, who is the one most suited to fighting cancer 7 times?”

You know what this kid, this wonderful, strong, confident, young woman answered?

“That’s why you have the hammer.”

Damn straight.

**WHACK**

We’re scheduling a little brain surgery later in the month. I would greatly appreciate your thoughts and prayers for me, my family, and especially the medical team.

Three of the last three scans have shown “new” things. Did anyone ever think that maybe the scans are the actual problem?!?

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PS – I have been kicking around this tattoo idea of my missing body parts. I was pretty disappointed when everyone decided to not cut out part of my lung. Without “lung” my list was a tad anemic:

Tonsils – Appendix – Kidney -- Adrenal Gland

But now, now I have a LIST!

Tonsils – Appendix – Kidney -- Adrenal Gland – Brain

That’s some list!!

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