TL/DR - I have cancer again. (Still? Yes, I still have cancer, but I also have new cancer. I don't even know which words to use!)
It's been some time since I've re-introduced myself. I do this from time to time to help the Napkin Notes Community get the "whole picture" of the Napkin Notes Dad. A lot of people join the community after seeing a note I've posted. Some join because share Emma's softball greatness. I'd like to think that there are even a few Star Wars fans here.
And many of you have joined to help support us through my health issues, namely, cancer.
I have not shared much health news lately. Honestly, there wasn't much to share. I have scans pretty frequently, every 8 to 16 weeks. The results have been stable for a couple of years. Here's the history:
- 2011 - 13cm tumor, renal cancer, left kidney, removed surgically
- 2012 - diagnosed with mild prostate cancer. It's small and slow growing. We're not currently treating it. At the time, my doctor said, "Garth, you are so much more likely to die from kidney cancer than prostate cancer. Let's keep our eye on the ball."
- 2013 - 2.5cm renal cancer tumor on left adrenal gland, removed surgically
- 2014 - started daily "chemo" treatment of votrient
- 2014 - multiple renal lesions on liver and right adrenal gland
- 2014 - significant reduction of lesions after 90 days of chemo
- 2015, 2016, 2017 - not much change, continued taking daily chemo
- 2018 - well, crap. What's that spot on my lung?!?
So, here goes.
Hi. My name is Garth Callaghan. I am also known as the Napkin Notes Dad. I have metastatic kidney cancer and prostate cancer.
But our story is so much more than my seven year battle with cancer.
I am re-introducing myself because I have had some community members taken aback when I mention being sick or doctor appointments. They didn't know. All they knew was that I write Napkin Notes to my daughter, Emma, each school day.
I had an MRI & CT last month and have honestly been sitting on the results. We only told family at first. There were too many things we had to take care of before we could really process this new development. There's a spot in my lung which we've been watching. It doubled in size since the last scan. F***!
We don't exactly know what this means, yet. Is my treatment failing? Is this a new cancer? Am I really the unluckiest cancer patient around?!?
We met with my team, a new surgeon, and a new oncologist. There were three different opinions. Three options presented. Two of the docs were heavily suggesting surgery. I love that idea! Yes, let's cut the damn thing out! (On a side note, that would help me round out a tattoo idea I have - a list of my missing body parts!) The new oncologist whom I love, is at the Emily Couric Cancer Center in UVA. I loved his methodology and insight. I also loved his candor. "Mr. Callaghan, your survival rate doesn't go up because of a surgical procedure." Well, crap.
His recommendation was to wait. Let's wait 90 days and watch it closely. Maybe it won't grow. Maybe it won't spread. And, if it does grow or spread, we can still cut it out in July.
So, I get to continue waking up every morning knowing that there's cancer in my body. This isn't really anything new. I've woken up every day since August 2012 knowing there is cancer in my body.
I've always known there is a distinct possibility that I'll live for the rest of my life with cancer in my body. Again, it's better than one of the alternatives!
Fun fact - I wear Star Wars shirts to each and every single medical appointment I have, no matter how small. You'll see me post a photo and make a comment like, "It's a Star Wars shirt kind of day."
When I was first diagnosed with cancer 7 years ago, I decided then to only wear Star Wars shirts for any medical appointment and made sure that the people treating me understood why I did so. It wasn’t for my love of Star Wars, although that was an added benefit. I wore outlandish Star Wars shirts so that some part of them might recognize me from appointment to appointment. It absolutely works and I have about 60 Star Wars shirts now!
I am also know as a prolific Napkin Note writer. When my daughter Emma was in kindergarten, I started to write an inspirational note on a napkin and tuck it away in her lunch box. When I was diagnosed with cancer a third time, I worried I may not live to see Emma graduate from high school. But I wanted to continue the napkin note tradition. So I set out to write all of the notes Emma would need to see her through to graduation, just in case. I wrote 826 napkin notes in all. Today they’re stored in a special box for safe keeping.
I still write a new note each morning. Graduation is literally right around the corner. I can't even imagine what I'll do in the mornings next fall when Emma is in college. I am actually tearing up just thinking about it. I am actually more sad about this than about having cancer again.
We have a lot of wonderful people walking with us along this crazy journey. Thank you so much for lifting my family up during this time. We couldn't do this without you.
Pack. Write. Connect.