This was originally an email written to my family and friends on the date above. I decided to make these public in the event they may be helpful to someone in the future who is embarking on a similar journey to mine.
There isn’t *too* much to report since my last email, but it’s generally good news. I’ve made consistent progress in rebounding from the debilitating back pain I was experiencing. I’m still down about 15 pounds (and struggling to put that back on), but my back pain is largely gone. I’ve got to credit my acupuncture treatments for a lot of my progress, and I’ve been on various pain medications while we worked to get that under control.
I’ve just reduced my pain patch dosage down to 25 micrograms (it was 100 micrograms initially), so that’s great news. I’m sleeping reasonably and not experiencing too much tumor-related pain. The pain meds I have been on have made me feel cold (I’m pretty much perpetually in a heavy sweatshirt or down shirt), so I’m glad to be ramping down on those. My back still gets tired, I think I need to look at starting some physical therapy to build strength.
The Regorafenib treatment is no fun as expected. I’m still working on ramping up the dosage but I’m very fatigued and napping frequently; and the soles of my feel are sore and painful. However I’m still able to walk a bit and have been walking Caitlin to school in the mornings. I’m a bit slow on the return trip – walking downhill is harder! We will check progress with another scan in a month or so.
I stepped away from work on September 15th and am now on medical leave. I hope that I’ll be in position to return after participating in a trial successfully, but I’m not too worried about getting back just yet.
With some help from my mom, I’ve started contacting a list of ~30 or so clinical trials that might be an option for me. The expectation is that about 25-33% will be possibilities, then we’ll evaluate which we think is the best option. There are some pretty cool things happening in these trials, so hopefully I’ll find something that can do good work for me.
Heather was out of town this past weekend on a girls trip am I’m pleased to say that the dog, Caitlin, and I all survived (I had some help). The trip to Maine last week with Heather and Caitlin was wonderful. Great times with great friends, and some very special moments. I’m looking forward to my conference in San Francisco at the end of the month as well.
So that’s where I am right now – in a bit of a holding pattern and doing my best to smell the flowers along the way.
This post is part of the thread: Cancer – an ongoing story on this site. View the thread timeline for more context on this post.