I made a 5-minute video to share about some of my updates:
Clinical Trials Update
I ended my clinical trial at Hoag Newport Beach, and I will be receiving treatment again at UCLA and also partly at UC Irvine. So I’m a Bruin again! And part Anteater too, I guess. (BTW, I didn’t know that UCI’s mascot is named Peter the Anteater.)
Since the last blog update, it seemed there wasn’t a good fit of available clinical trials, so several of my consulting doctors recommended I return to standard of care treatment, a chemotherapy similar to what I received almost two years ago. Hopefully, enough time has passed that my body will allow this chemo to be effective.
I’m happy to be returning to UCLA for treatment starting on Tuesday, May 12. Not only for the convenience of its location, but because I miss the staff there. I had built up relationships with many of them, and then I just left without saying goodbye as that was the third time I left a facility and didn’t know it was my last day there. It’s a very abrupt and unsettling feeling.
Revolution Medicine expanded Access Program
As mentioned in the video, this is the program from Revolution Medicine that may allow for me to receive compassionate use of this breakthrough chemotherapy:
TTFields
Part of my new treatment plan will be trying out the TTFields, or Tumor Treating Fields. I will be wearing it 24/7 but will only activate it for a limited number of hours per day, which can happen while I am asleep. I guess this is the quickest way for me to get a six-pack. Here is a picture of the device from the company’s booth at this year’s PanCAN event:
Scrambler Therapy
I’ve been receiving treatment for my neuropathy called Scrambler. After ten treatments, my initial results have been better than my skepticism expected.
Pain
At each Scrambler session, I’m supposed to rate my pain on a scale of 1 to 10. With time, I’ve discovered there are multiple aspects to my neuropathy, some of which I wouldn’t have previously categorized as “pain.”
As the treatments progressed, I noticed that the tingling sensation was lessening, which made the numbness more prominent. I realized there were several more aspects: coldness and sensitivity to metals, sharp pain, and sometimes “burning” pain.
Which brings up several points:
- I had become so used to the neuropathy that when the treatments began, it was very odd to feel a bit more “normal” again. My hands and feet weren’t tingling as much as before. What I first perceived as my feet feeling “hot” was actually identifying an increased absence of coldness.
- Breaking down my neuropathy “pain” into several components (sharp pain, coldness, tingling, numbness and acute aching) allowed me to notice subtle changes more than if I looked at them as a sum.
- Even though we want to avoid it, we can grow accustomed to our pain. That’s good and bad. Whether physical or emotional pain, we don’t want to build a home in our bodies or hearts for it, but then again, we can also learn to not let it get the upperhand.
- Also, pain can protect us by warning us that something’s not right. Pancreatic cancer is notoriously detected late because patients didn’t feel anything was wrong until it was pretty advanced. I like this Instagram video I saw from Tony Dungy: https://www.instagram.com/reel/DYClGRAm_6n/
Understanding vs. Feeling Pain
Recently I was wondering if God feels pain and sorrow. And as much as I know that He’s a Holy supernatural being and there will be many things incomprehensible to us… I thought that if He’s omniscient, or all-knowing, would that mean He feels sorrow? I mean, if someone understood the outcome or reasoning for things, would that lessen or eliminate the pain?
It’s just that I find people are often quick to rush in with “God’s got a reason for this” or “Your loved one is in a better place now”, etc. As much as the brain part of my faith may agree with them, sometimes the words feel insufficient when feeling fear or loss or pain.
I don’t expect my friends or even my God to come to me and explain my pain away. I’d rather they just sit with me in the midst of it, and let me know I’m not alone or crazy and that God’s with me in it. These are the times that I most learn and experience the presence of God.
This is why I try to meet with people in my support group face-to-face (when possible and if they are willing), so I can sit with them and walk alongside them. We start there. I want them to know that God loves them and is near, and I can tell them without words.
Prayer Requests:
- The chemotherapy I am revisiting starting Tuesday, May 12 to stabilize or reduce my tumors, and that I will tolerate it well (keeping my hair this time would be a welcome bonus 🙂).
- A strong, collaborative working relationship with my oncologists.
- That I can soon receive the new drug—either through compassionate use or once it comes to market—and that it proves effective and is well-tolerated.
- The Tumor Treating Fields treatment will be effective and fully covered by insurance.
- My neuropathy to remain manageable so it does not limit my chemotherapy, and that I stay on top of it through medication, Scrambler therapy, or other means.
- Strength and comfort for my support group members as we attend the funeral of a dear friend lost to this disease. It is a tough road to walk, but I am thankful to walk it alongside fellow travelers.
Finally, I just saw a video of Chadwick Boseman spending time with some kids dealing with cancer. I don’t know why I started to cry when I saw how happy the kids were to meet him. It still amazes me how he was able to encourage others while keeping his own battle with cancer private.
P
