Hello, friends. I’m sorry this news update isn’t as bright as we hoped for. Yesterday I had my MRI, then met with Dr Henson for his analysis and guidance. Not only is the contrast section continuing to grow, there are a couple other spots above the tumor’s center which are showing contrast as well. In response Dr Henson and two other doctors at Swedish are scheduling me to take a five day treatment plan of “cyberknife” therapy, which is like radiation but more directly focused at the growing bits. I’ll also be quitting the chemotherapy as the growth shows my chemo isn’t effective as intended.
In addition to cyberknife we’re evaluating some clinical trial options which seem to have some positive results. As my upcoming treatments get defined and scheduled I’ll post another update here.
In the meantime we’re also living our life! Helping the kids with school work, playing games with them, watching The Office episodes with Kali :), the simple things sure brighten our days. And we’re grateful for your daily precious support. Be well, February is just around the corner.
I didn’t fetch an image of the contrasting MRI cells, so here’s the next best thing
I was hoping today’s meeting with Dr. Henson would reveal how my treatment is doing, but it’s not terribly clear yet. The MRI showed that the contrasting section of my brain has grown a little in the last four weeks. Maybe you’re wondering “what does that mean?” — that’s what Dr. Henson and I are also wondering. He gives a two-thirds chance of it being more scar tissue, and a one-third chance of it being more aggressive cancer. Unsurprisingly, the doctor has scheduled an MRI for four weeks from now which should provide more data to confirm what’s happening. If it’s scar tissue we’ll continue with the remaining four months of oral chemotherapy, otherwise we’ll switch to a more focused radiation treatment that would be completed in just five days.
Though waiting for answers is a challenge, I will appreciate each day rather than holding my breath for the next four weeks.
…and Wow, it’s 2020? I’ll spare you the corny banter and just wish you all a memorable, magical time… HAPPY NEW YEAR!!
Yesterday I met with Dr. Henson to get his assessment of last Wednesday’s MRI. Above is the image showing the tumor region pre-radiation (left) and post-radiation (right). While some patients are fortunate enough to see a hollow area in their first post-radiation MRI, it’s also not surprising to see a bright “contrast” area, as in my MRI above. The contrast likely indicates scar tissue of radiated cancer cells, but there’s also a chance that living cells are progressing. Dr. Henson seemed fairly certain my contrast is evidence of scar tissue, but it’s too soon to tell. I’ll have another MRI in January which will hopefully yield more insight.
Thankfully, I get another month of extra time with Kali and the kids, slow “joggy walks”, biology lessons and occasional little naps as the needs arise. I’m looking forward to our Christmas and wish you all a happy holidays as well. Above all, we thank you for your support!
On Tuesday, November 6th, I had my final radiation therapy! While I’m glad to be done with that daily obligation, I’ll miss the awesome staff at Swedish Radiation Oncology in Edmonds.
Patients typically ring the “I’m done!” bell after their last treatment. I just wanted a photo with the staff (Kim, Linda and Tami on this day)
My medications are significantly reduced now: no chemotherapy for 4 weeks, no anti-nausea pills, no steroids… so my sleep should get more stable (no more waking up at 5am with a bunch of epic ideas driving me out of bed). All in all, I’ve done well under the circumstances. The doctor told me the hair around my left ear should return in a couple months, though it won’t necessarily be the same color and style as before–so that’ll be quite a Christmas gift 🙂
Speaking of gifts, I was allowed to keep the radiation mask. While I’d love to turn it into a wall lamp like Simone Giertz, I’m thinking it could come in handy for next Halloween.
That’s all for now. I’ll share an update after the next MRI.
The good news is that things are still pretty routine and similar to my last report. I’ve got 7 radiation treatments remaining, and thus far the symptoms are light: mild fatigue requiring a short afternoon nap about every other day, and a bit of hair loss that makes me look uber-trendy:
Can you spot which hair styles are radiation-therapy induced?
In early December I’m due for my first post-radiation MRI. This will likely look problematic as it can reflect inflammation caused by the radiation. In January I’ll have my 2nd post-radiation MRI, which should more clearly indicate how effective the treatment is. I’ll share updates for each of these steps.
In the meantime I’ve become obsessed with learning about biology, including an online course as well as weekly tutoring sessions (I like a challenge, what can I say?) I’m also enjoying spending quality time with the family and friends, it’s been a welcome comfort.
I’m grateful for the many folks who’ve given me rides to my radiation, made food for our family, come for social visits, and expressed their support and concern in various other ways. Thanks so much!
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Last Sunday I “ran” (walked + jogged) the 11th annual Run of Hope to benefit pediatric brain tumor research of Seattle Children’s Hospital. The day was beautiful and I owe big thanks to Paul, Suzanne, Sumeer and John who came to join the effort. Also big thanks to those of you who donated! Of the event’s total $500k earned, my effort garnered $1575 (not the $3485 listed on the buggy FirstGiving website) which far exceeds my expectations, and is rather awesome.
Suzanne, Ken, John and PaulSumeer, Amaya and Asha joined on a whim to walk with John, bravo!
Mom came out last week and (in addition to being my chauffeur) really added comfort and delight for us all on my first full week of treatment. Thank you, and happy birthday, Mom!
Today I had my 10th radiation (of 30), and to date I’ve had fairly limited side effects from that or the oral chemotherapy medication. The nurse said she anticipates the rest of my treatment will probably be the same, so needless to say I’m exceedingly grateful for this outcome.
I’ll keep the blog updated periodically, but here’s hoping for a series of boring posts ahead saying “things are still fine” 🙂
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 (?)
