It’s been almost exactly three months since my post about having thyroid cancer. It’s also been almost exactly four months since receiving my diagnosis. I’ve been happy to update people as they’ve asked me about my status. Since it’s been a while since my first blog post, I figured it was also time for a more public update. Here are some of the common questions I answer when giving an update about my cancer’s status:
Q: How are you feeling?
A: Thanks for your concern. I’m doing quite well. My original symptoms that led me to the cancer diagnosis are not issues anymore. I’ve lost 30 pounds thanks to anti-angiogenic therapy and exercise. My sleep apnea is under control without a CPAP machine. My energy is up, my body is healing and recovering from stress, and I’m happy.
Q: How is chemo going?
A: No, chemo. Sorry.
Q: When is your surgery scheduled for?
A: I have tentative surgery scheduled for 1 September, but we’re all rather confident that it won’t be necessary (see below).
Q: So, you’re not receiving treatment for your cancer?
A: I am receiving treatment. It’s called anti-angiogenic therapy. In the 70’s, researchers discovered that two of the primary causes of tumor growth were the body’s natural process of angiogenesis and tumor hypoxia. Essentially, the tumor sends out signals to the body that it’s under oxygenated and needs blood/oxygen. It will produce an excess of these chemical signals (attractors) to the body in order to bring capillaries over to feed it. As the tumor is fed with blood and oxygen, it grows, develops, and spreads. Anti-angiogenic therapy targets the tumor’s angiogenesis broadly by flooding your system with chemical angiogenic inhibitors. These inhibitors counteract the excessive attractors the tumor is sending to your body, causing your body with withdraw blood and oxygen from the tumor. This starves the tumor and kills it.
Anti-angiogenesic treatment is a new form of treatment. As such, when compared against other existing forms of treatment, it doesn’t have the wealth of data behind it to fully prove it’s efficiency. The FDA has approved certain drugs for use in this treatment, but only for the treatment of cancer recurrence. Doctors, the ACA, and other medical bodies still perscribe surgery (and only surgery) for a primary, malignant tumor, such as mine.
Studies in nutrition, food science, cancer treatment, and angiogenesis have shown that there are angiogenic inhibitors found naturally in whole, raw foods. The website www.eattobeat.org/food/ (maintained by The Angiogenesis Foundation) has a documented list of the foods that contain these inhibitors, reduce chronic inflammation, and repair oxydation damage done to cells and DNA. Since anti-angiogenic therapy is not a form of treatment a doctor will recommend for a primary, malignant tumor like mine due to the need of more data behind the treatment method, I have created, and been following, my own anti-angiogenic regimen.
Q: Why are you against having the surgery?
A: Because once I’ve decided to have the surgery, I can never take it back. I don’t feel like I have enough data or information to make such a permanent decision. That being said, I haven’t ruled out surgery as an option. To be able to make that decision, I need more data points.
The driving reason for me to have surgery is the morbidity risk factor. Generally speaking, the medical profession sees the morbidity risk factor for leaving differentiated, malignant, papillary thyroid cancer in the body as greater than the morbidity risk factor of life without a thyroid gland. Considering that I’m in stage 1, I don’t feel that I have enough information in front of me about my own case to make such a permanent decision and agree with the balance of scales. I need more data points to see a trend that would lead me to that decision.
While I continue gathering data to be able to effectively make that decision, the anti-angiogenic regimen has a good enough cost/benefit ration that I’m convinced to pursue that option while investigating the surgical option.
Q: Have you been back to the doctor or had any more tests done?
A: Yes, many times, to both. Data is an extremely important factor in all of this and the only way to get more data is to continue to test, poke, prod, and observe.
Three months ago I had a second ultrasound with our now permanent endocrinologist. We discovered the size of the tumor (2.2 cm) and that there were four lymph nodes that appeared to be carrying cancer tissue. Or in other words, there was some evidence suggesting that the cancer was spreading, classifying the cancer as stage 2. Before we went on vacation at the end of May, I had an ultrasound-guided lymph node biopsy. During that biopsy, we discovered that the tumor has shrunk to 1.8 cm and that where there were four concerning lymph nodes, there was then only one. The doctor, however, still took samples from two lymph nodes in order to broaden the range of our results.
We found out last week that the results from my lymph node biopsy were negative!
What does this mean? It means that my cancer’s classification has moved from stage 2 to stage 1 and it is not metastasizing (spreading). Whether this is a direct result of my anti-angiogenic regimen I’ve been undergoing is unclear, but something is certainly working and pushing the cancer back. We met with the doctor on June 8th to go over the results in more detail and discuss next steps. Essentially, this biopsy result extends my window of opportunity to self-treat through anti-angiogenic therapy until August. At that point, I’ll have another ultrasound and determine whether surgery is necessary in September.
Q: When will you be returning to Mozilla Utah, Mozilla Reps, a church calling, or any other volunteer activity?
A: I don’t know. I can say that I don’t see that happening until 2016. If I do come back to Mozilla Utah, it won’t be in a leader capacity. I’ve decided to permanently withdraw from that level of local community responsibility. I’m slowly coming back to Reps in the form of the global l10n hackathons that I’ve been organizing for Mozilla all through 2015. I’m happy to submit budgets and do that admin work for any Utah-based Mozillians who want to hold events and need funding or gear to do it, as I am now the only Rep in Utah once again.
My health and my family need my time more right now, in many different ways. You’ll probably see more about that as time goes by.
Q: How can I help?
- Send me along some good sugar-free, plant-based recipes.
- Take us out for a night/day of fun and frivolity. Cancer is life-changing and I think about my cancer every day. Opportunities for fun distractions are always welcome and needed.
- Instead of asking, “How are you feeling?” ask me “How are you today?”. If I have a cancer update, I’ll offer it, but the question “How are you feeling?” puts me (and my wife) in an awkward, uncomfortable place where we feel obligated to talk about my cancer, whether we’re up for that conversation or not.
- Continue to keep us in your thoughts, prayers, on the temple rolls, and in your fasts.
Thank you all for your thoughts, prayers, and support through all of this. Thank you for watching Henry last minute, for providing us with dinners and friendly company, and for your positive messages on Facebook, twitter, email, and in person. Good things are happening and I’m grateful to each and every member of my friends and family network for your kindness and support. It’s pulled me out of dark places, helped me to keep perspective, and kept me sane. Thank you, from the bottom of my heart, thank you.