1621 Days

Well, Dr. Swainey was wrong.  (The following took place in February 2014.)

“The other day Lissa and I were at my doctor’s office. He’d taken me off the medicine for a few days because my liver wasn’t handling it well. He was also concerned about the cumulative impact of the side effects. I was in rough shape and not dealing with the medicine very well either.

I rebutted his desire to have me take a break. “I am a full-dose patient. I want to go on the record that I don’t like this.”

He smirked a little and replied, “So noted.”

I wasn’t going to win this battle, especially not with Lissa in the room. She was a witness. Lissa knew that my body was stressed and I was close to reaching my physical limits. She asked the doctor, “How long will he be taking this?”

The doctor turned to face my wife. And he said, “For-ev-er.” Like that. Spaced out. As if the word “forever” wasn’t dramatic enough.

I will most likely take this medicine for the rest of my life. ”

— Napkin Notes: Make Lunch Meaningful, Life Will Follow

Back when Dr. Swainey commented on taking Pazoponib forever, well, I thought forever was going to be a lot shorter of a time than what it turned out to be. I know we never discussed it directly, but the implication was that I would take the medicine as long as I was still alive. And although I wasn't in immediate mortal danger, it was something we could visualize on the horizon. 

I made it a whopping 1621 days. That is a looong time. 

The typical Pazopanib patient takes the drug for 11 months, or about 330 days. I took the drug for 4 years, 5 months, 10 days. 1621 days. (Yeah, I am quite excited that 1621 is a prime number.) 

I take a break about once a quarter. I take the medicine for 12 weeks and then take a week off. I just started my break and took my "last" dose of the session on Thursday, July 26. I met with my oncologist Friday, and he discussed the scan results. With the growths in my lung and liver, he wanted to see if I could get into a trial, but at the very least, I needed to stop taking my Pazopanib. Funny, huh. He didn't know I was planning on a break anyway at that point, and I haven't opened the pill bottle since. 

I feel a little shortchanged. I mean, if I had known it was going to be my last dose I think I would have taken it with some tequila or something, right?!? 

I started a new therapy yesterday - Nivolumab. It's an immunotherapy and I will go every month and sit in a chair for a bit while the drug drips through the IV. To be honest, I didn't feel anything while in the chair. I don't know what I expected, but it was much more boring than I thought it would be. 

"Chemotherapy and You"

Is it a coloring book? No, it's more like Highlights for Children, but for people taking chemo. I'm actually taking Nivolumab, which is an immunotherapy treatment, but this is the book I got anyway. 

Boy, I felt it last night and this morning though. Wow! Every inch of my skin felt like it had needles poking into it. I felt like I had run a marathon this morning using all of my muscles. It was intense, and not the good kind of intense. Rumor has it that this treatment has significantly fewer side effects than my first treatment. I'll let you know. 

There is no for-ev-er plan for this treatment. It's a two-year gig. Stick around. I have more stories to share! 

As much as I hated the side effects of Pazopanib, it was the 'devil I knew.' I know I need this new treatment. Pazopanib isn't working any more. But man I hate this uncertainty of cancer and treatment. 

Thank you all for continuing to walk with us, especially with this forced transition. My dark humor can be a lot to take at times. (Yes, I do use my cancer card when I can. I can't tell you how many times Lissa has asked me to take out the trash and I just hunch over, grasping at my missing kidney, and say, "ohhh, my cancer.") 

Much love, 

GC 

I'm W. Garth Callaghan, 'Napkin Notes Dad,' and This Is How I Parent

On Lifehacker: How I Parent

Ever since his daughter Emma was in elementary school, W. Garth Callaghan would jot down inspirational quotes and bits of dad wisdom onto napkins and slip the notes into her lunchbox. It became their special thing, their way to connect. He wanted to make sure Emma could read a note from her father every single school day until graduation—even if was no longer around to write them.

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Travel Tips

Emma's off to Italy! Since I can't pack her a note in her lunch, I packed a bunch of notes and hid them in her suitcase. I hope she finds them in time since they are travel tips I have learned over my many years traveling. 

Dad Travel Tip #1

1) Put dirty underwear back in the suitcase next to clean underwear.

2) Forget which is which.

3) Eh. Who cares? Now you have an endless supply of "this is probably clean."

Pack. Write. Connect.

Dad Travel Tip #2

When ordering cappuccino in Italy, make sure you sat the right words for the drink size:

Grande = great

Venti = 20

Trenta = 30

Makes sense, right??

Dad Travel Tip #3

If you want good pizza, try to find a Sbarro's.

Dad Travel Tip #4

While passing by an obnoxious tour group, it is acceptable to whisper under your breath, "Damn Americans" and then start humming, "Oh, Canada!"

Dad travel Tip #5

If you can't say something nice, say it in French.

Dad Travel Tip #6

"When you come to a fork in the road, take it." - Yogi Berra

Dad Travel Tip #7

1) Google "Best museums in _______"

2) Boy, that's a lot of museums.

3) Buy some gelato.

Dad Travel Tip #8

Don't get on the plane. Get in the plane.

Dad Travel Tip #9

You don't have to use the hotel laundry. You don't do laundry at home, why should it be different on the trip?

Dad Travel Tip #10

At Customs, declare your chaperone is an idiot.