More Steps Along A Foggy Path

A few months ago, I wrote a blog post about my three month PET scan results. Toward the end of the post, I told a story about buying a huge package of earplugs the first time I went through cancer treatments, which prompted the thought: “Will I live long enough to use all these earplugs?” I realized a couple weeks ago that there were just a few sets of earplugs left in the box, and I was looking forward to posting about using the last of them this week.

I got the results of my six month PET scan, and there are new nodules starting to grow in my right lung (the same lung as last time). All my lymph nodes look stable and the large mass has gotten a bit smaller, but the nodules are very likely a metastasis of the lung cancer. Surgery or radiation are not options at this point (although they may come into play later, depending on the circumstances). It’s generally considered incurable.

This is a failure of first-line treatment since it happened so soon after finishing chemo-radiation, so I’m moving on to second-line treatments, largely in the land of clinical trials. While there are some chemo options, the initial (and best) candidates are immunotherapies. I’ll be getting a new biopsy and we’ll do genetic testing on the cancer as well, to see if there are any targeted treatments available that might help. I’ll be making a couple posts to explain the options available over the next couple days–science is close to turning this into a chronic deadly disease to be managed, and I hope to find a treatment that buys enough time for that revolution to occur.

When I took that last pack of earplugs from the big box the other night, I sat them on the nightstand and stared at them for a good five minutes. Then I cried for a few more minutes and tried to figure out what to do. Should I throw that last pack of earplugs away in defiance? Should I burn them and the box they came in? It had been a rough week, both because I had to start telling people and also for me and Charlie trying to cope with the unknown future. I spent most of that week in the well of darkness. I was sad, disappointed, scared and angry.

After a few more minutes, I took a deep breath. I picked up the earplugs, opened the little bag, and put them into my ears. Over four years ago, when I had Stage IV head and neck cancer, I asked myself if I would live long enough to use that box of earplugs, and I did live long enough. That’s not a reason to burn something in protest: it’s a reason to celebrate. I stepped out of the darkness in that moment, back into the light of hope and, more important, acceptance of where I am and the now even foggier path ahead of me.

I’ll post about the new types of cancer treatments available and the clinical trial process over the next few days. I’m doing more than medical treatments–I’m meditating, eating anti-cancer foods and taking supplements, walking as much as I can, and trying to avoid stress and increase creative activities. In other words, I’m doing OK, under the circumstances. I’ve taken the first steps onto that foggy road and I’m open to whatever the future holds for me.

The stretch of the seawall by the Rowing Club, covered in fog, a large tree stretched out in the forground.

3 Comments

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  1. All I can try to say to you is that I am heartbroken for you but in my heart will walk this foggy path with you and Charlie.

    All my love to you both.

  2. I’ve been following your game development twitter feed for a while, since before your last run of chemo. I’ve learned a lot from, and no doubt will continue to, and really have wanted a way to thank you for continuing to post insights in the face of a hostile internet and industry. I didn’t want that way be to be a new post on your cancer blog. When I read your tweet announcing the metastasis it was like a trap door fell out from under my stomach. I don’t know what to say that everyone you know and are close to likely haven’t already said, so instead I’ll say that that there are a lot of quiet people out there just like me, reading your posts and rooting for your recovery.

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