I’ve arrived at the chemo / radiation treatment phase.
Last week my neurologist, Dr. John Henson, moved the start date for therapy up to today. This made sense to me, I’m eager to zap any mutant cells as soon as possible! So last night I took my first oral chemo, and though I was anticipating some nausea, I got a full night’s sleep with no hint of it. Surely that’s due to the anti-nausea meds I took an hour prior to chemo, but also my digestive system seems pretty robust.
Then today I had my first radiation therapy.
Signs are from last year’s Seattle Marathon, but the sentiment is still touching. Sister Kim, thanks for my new favorite t-shirt!
Here’s a peek into the process…
As expected, the first radiation treatments don’t have major side effects. A couple weeks in it’s likely I’ll have some fatigue and modest hair loss (hello, hats!). We’ll see how it goes, but I’m glad that for now I still feel fairly normal.
Massive Gratitude
My gratitude talk may get cloying, but I can’t mention my condition without acknowledging how immensely fortunate I am. Here are the Top Five (of what must be a thousand):
Kali (wife) is not only rocking it as my care project manager, she shares my positive attitude and makes every day comforting and a joy
Sidney and Calvin are always fun, and keep me focused on what matters most in life
My extended family, friends, neighbors and coworkers… your support is awesome!
My health (tumor aside) is very solid, leaving me free of anxiety from complicating health issues
The staff at the Swedish Edmonds campus are super friendly and make the radiation treatments as relaxed as possible
To all you stars in our sky, thanks again for reaching out and connecting. In these times it means more than we can express.
As of yet we’ve not shared any deep details with Sidney and Calvin. They are aware I had brain surgery and am getting treatment, but they don’t know much beyond that. Please limit any details to adults.
The Essence
At age 50 I discovered skateboarding, my greatest passion aside from Kali and our kids. Unfortunately (and unrelated to any physical activity) this year I developed a fairly significant brain tumor. While the tumor was surgically removed last week, further treatment is necessary.
History
Thursday, July 11th
On a flight to visit our dear friends in Kalispell, Montana I played video games on my phone. For a minute afterwards, I was unable to read words in a news post on my computer. At the moment, I chalked it up to just being extremely tired, but it was actually my first seizure.
Monday, July 22nd
After work, I played a video game on the Wii console for about 1.5 hours, trying to impress Sidney and Calvin on Wii Tanks. Afterwards I experienced my second seizure — reading was again a struggle, and I was having trouble recalling some words and names of people and places. This lasted for a couple hours. Early the next morning I decided to go to the emergency room to get checked out.
At the Swedish Medical Center in Ballard, I was given a CAT scan, two MRIs, then transferred to the Cherry Hill Campus for an EEG and spinal tap. The following morning the neurologist noted the seizure evidence in my left cerebral cortex and scheduled me for a follow-up MRI six weeks later.
Tuesday, September 3rd
I had my follow-up MRI which showed that a smaller portion of the affected brain had quickly grown into a grape-sized tumor and needed to be removed as soon as possible.
Friday, September 6th
Ken and Kali pre-surgery
Surgery at the Cherry Hill campus went smoothly and the tumor was completely removed. The side effects of surgery have been fairly minimal: I was able to return home after one night in the hospital, and have been resting and recovering since then.
Thursday, September 12th (today)
Kali and I visited Dr Henson for my pathology report. As you can see from the before and after scans, the tumor (white circular bit) is gone.
Unfortunately, the pathology report confirmed the aggressive nature of the tumor, which now requires extensive treatment.
Treatment Plans
On Monday, September 30th I’ll begin a 6-week regimen of daily radiation therapy and oral chemo therapy. After that I’ll continue with the oral chemo for 6 months. After that I’ll have more follow-up MRIs to assess the effectiveness of the treatments.
This may be a long haul, and treatment may yield some fatigue, nausea or other symptoms, we’ll see in time. Thankfully, the medical experts caring for me (link below) will ensure I’m getting the best care possible through the entire process.
A Few Gratefuls
Kali and I are exceedingly grateful for…
The support of the Ben & Catherine Ivy Center for Advanced Brain Tumor Treatment, one of the most comprehensive and experienced centers in the nation. We ended up here simply by the fortune of living in Seattle and having Swedish in our hospital network.
Google’s generous health insurance.
More than anything: our wonderful friends and family.
We’re still working to organize my treatment schedules and other logistics because there are loads of facets of this situation to process. In these busy times we may be slow to reply to text or email. Just know your support is more meaningful and helpful than we can express!
Note: I’ll provide occasional updates via this blog post, though I haven’t determined how frequently yet, perhaps every 2 or 4 weeks (?)
