FAQ

I'm adding this FAQ because the blog's been running for awhile now -- nope, not dead yet -- and I realized the other day that some of the basic information is getting a little hard to find. It seems unreasonable to force people who might be interested in what's happening currently to have to read back though nearly two years of posts to find the information. 

So here it is. I'll add to the list as thoughts occur to me. Feel free to leave suggestions for new questions in the comments and I'll try to answer them. 


What sort of cancer do you have?

Stage IV colon cancer, which was discovered in June 2014. At the time it was discovered, there was a large tumor in the first turn of my colon, five or six tumors in my liver, and signs of cancer in a variety of lymph nodes. 

What treatment regimens have you gone through so far?

I had a right hemicolectomy in June 2014, which removed the tumor from my colon (along with a third of my colon).

From July 2014 through December 2014 I received chemotherapy infusions of oxaliplatin and Avastin followed by a 48-hour infusion of 5FU every other week.

From January 2015 through September 2015 I was on capecetibine pills combined with infusions of Avastin administered in three week cycles.

From September 2015 through April 2016, I was receiving infusions of irinotecan, another chemotherapy, in addition to the Avastin infusion and capecetibine pills. 

Beginning in May 2016, all the infusions stopped and I was moved onto Lonsurf, another pill-based chemotherapy. This is my current treatment regimen. 

Where do you get your cancer treatments?

For the first six months, I received care from Group Health. (My surgery was performed at Virginia Mason Hospital.) In January 2015, I switched my insurance and started being treated at the Seattle Cancer Care Alliance. 

What's the life expectancy for what you've got?

I was told 6 months without treatment and 30 months with treatment when I was diagnosed. The SCCA states five year survival rates of 26%, while the national cancer database puts the rate at 10%. But I've met folks who've survived ten-plus years, and heard of others whose survival was measured in months. So who knows?

For the record, as of June 10, 2016, I'll be at exactly twenty-four months. 

What's with all the travel postings?

To misquote City Slickers, getting a terminal diagnosis sort of forces you to identify that "one thing" that's going to drive you through your remaining days. In my case, my one thing was seeing as much of the world as possible in the time I have left. With an accommodating employer, I try to take one trip a quarter. I used to create photo books for my trips, but now I just post pictures and commentary to the blog. It's easier and cheaper. 

Do you have clearances for all the pictures you post?

Actually, no. I tend to just search Google images for something that resonates. If you see an image I've used that belongs to you and you don't want it here, shoot me an email and I'll take it down.

I've read a few of your posts. Are you some kind of pinko commie or what?

You noticed that, did you? Here's the thing: My trip through cancer treatment has made it clear to me that the way health care resources are allocated in America is just insane. There has to be a better way. Additionally, I'm a huge believer in the impact of luck. The fact that I was born in America has made my life probably thousands of times easier than it would've been had I been born on the same day anywhere else the world, and I certainly had nothing to do with that. Finally, I also believe that social structures matter. My life was easier because I was born in the sixties and grew up to be tall, straight, white and male. For my generation, swapping out any of those categories would've had a definitive impact on the ease of my life. In short, I was dealt a winning hand, which only goes to reaffirm that the deck is, in fact, stacked. Combine those core beliefs together, and it's hard not to wind up as something of a pinko commie. 

Any recommendations for a new cancer patient?

I've got three. 

First, find an oncologist that you feel some affinity toward. There are lots of oncologists with lots of personalities and lots of approaches to treatment. Find one that works for you. You're in for a rough ride, and having a "driver" who you can talk to and who you trust is heading in the right direction is essential.

Second, join a support group. It is amazing how beneficial it's been to me to have a group of people who have been there and done that, and so intimately understand the choices and issues I'm facing. I might've just lucked out with the group I found, but I suspect not. (And I say all this as a huge introvert who hates talking about himself, blog posts notwithstanding.) 

Third, if your provider has them, go talk with the palliative nurses. They aren't just there to help people die. They're there to help with all of the emotional stuff that comes with cancer. I waited almost two years to see the ones at the SCCA. In retrospect, I wish I'd gone the first week.

Good luck with your treatment.

2 comments:

  1. Best of luck John. Thinking of you and inspired by your courage and perspective.

    ReplyDelete