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
The Napkin Notes Blog
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
I had a brain MRI on Monday. I couldn’t help but think of this song…
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.”
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!!
Scarecrow Image and Song Lyrics are owned by MGM and EMI
Well, Dr. Swainey was wrong. (The following took place in February 2014.)
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.
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.")
I just had a follow-up MRI and CT. I had been lucky enough to start to spread out my scans, but the image taken in April showed a doubling of a growth in my lung.
Metastases to the lung are very common for kidney cancer which has spread, so we were purposefully watching that area.Read More
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.