Happy New Year from… Los Angeles!
I ended up not taking the trip I was planning… for now.
Praise or Prayer
I’ve noticed that sometimes I keep delaying posting these updates because I’m waiting for a result to come in or a decision to be made. I realized the approach could be more informative vs appealing for help. Praise (update) report vs Prayer (need) request. I wonder how much I admit I need help, from people and God vs just wanting to tell you (and myself) that everything’s okay.
Update:
- My cancer marker numbers are up significantly (possibly indicating tumor growth), almost as high as when I was first diagnosed. But they measure possible tumor activity, as well as inflammation and infection.
- Abdominal pain. For better or worse, I’ve been experiencing an increase in abdominal pain. While it’s a bit uncomfortable, it also gives me a partial explanation for the higher cancer marker number. I recently noticed that the area of the pain is raised… as if something is under my skin. My doctor has ordered an ultrasound.
- Surgical Consult. As I noted in the previous post, while my pancreatic tumor remains stable (not growing), some of the liver lesions that I’ve had since my initial diagnosis have increased in size, but not necessarily in number. I had a consultation with a surgeon, and we’ll be pursuing a microwave ablation later this month. I’ve asked to be on a waiting list if anything opens up sooner.
- For now, I’m setting this ablation and pursuit of a clinical trial as a higher priority than my traveling aspirations, so at least for now, I’m postponing my trip. By the way, I appreciate all the encouragement I’ve gotten to travel. Wow, you guys really want me on a plane. 🙂
- Clinical Trial – As mentioned previously, I did not realize acceptance into a clinical trial would hinge so much on insurance coverage. Non-emergency, out-of-state coverage is often covered by Medicare, and sometimes group insurance policies. I’ve spoken with several helpful insurance agents and others, and I may be coming into some options to allow for out-of-state coverage.
I’m looking into trials out-of-state, and some locally as well.
Consult
It was rather sobering having the video call surgical consult. Viewing the CT Scans and seeing the size and growth of my liver lesions was a reality check. Since they had not been growing in the last two years, I didn’t really pay much attention to them, but the growth is noticeable.
I’ve learned that the liver has more options for treatment than my pancreas. Partially because it’s such a large and regenerative organ, and placement of the lesions are more accessible than the smaller, more complicated pancreas.
Ablation Procedure
I’ll be getting a microwave ablation, and I asked about other techniques, including IRE/Nanoknife and Histotripsy. We discussed the pros and cons of each of these procedures, and I felt very comfortable with my surgeon’s reasoning, including that there’s a much longer history with microwave ablation.
With a life threatening disease like pancreatic cancer, we don’t have that many tools at our disposal. I recently described my chemotherapy akin to Bruce Willis in Die Hard, using one weapon until depleted, then picking up another and trying that one, until you run out of weapons. So many people with my disease often look for a silver bullet in the form of a clinical trial for a new/novel treatment that may be more effective than the ones we’ve already exhausted. I think the same goes for surgical options too. I personally feel a tendency to look to the newer techniques, when I should be considering more tried and true techniques that may be appropriate for the task
Advocacy
Part of my hours of my recent investigation into clinical trial availability, insurance and transportation led me to Patient Advocate Foundation https://www.patientadvocate.org/. A case manager called me and spent the first part of our conversation listening to my retelling of the issues I was having with insurance and applying for the trial. Then she gave her perspective on all I had done. It was so relieving to speak with someone that was familiar with some of the roadblocks and the ways to deal with them.
We often tell fellow patients that they have to be their own advocate, but speaking to this case manager, I really felt a little less alone and a little less crazy. She offered to conference call with some agencies if necessary.
Pie Time
My main support group is online (via Zoom), and I have found it important to meet in person with other members when at all possible. Getting together one on one, seems to make this cancer journey a little more real, a little less alone.
After receiving a birthday coupon from Polly’s Pies, where every guest gets a free slice when purchasing an entree, I invited everyone in the group to get together. Our group members (about 35 people) are located all over the place, including Northern California, Florida and as far away as Turkey. But a few locals came out, and it was great to see 10 year survivors, 6 year survivors, and newbies chatting it up.
I hadn’t realized that most of us had never met in person before. It’s a very different dynamic from a Zoom call where we have to speak one at a time, but this way, conversations were very lively and simultaneous. Afterwards, I got a message from a member who drove 2 hours to join us:
this (disease) is isolating, humbling and seriously debilitating… seeking kinship with like challenged folks is somehow a comfortable path of least resistance to camaraderie and comfort… fast friends with complete strangers… I like it
We sat at these corner tables from 10am-230pm. Yes, we tipped very well, and we were very appreciative. I told the waitress (Lisa) who we were, and she said she figured something out because she kept hearing “chemotherapy” being mentioned…
Prayer Requests
- Less long winded updates 🙂
- Scheduling of my ablation procedure to be soon, but having peace in whatever schedule God has for me
- Safe and effective ablation
- Ultrasound scheduled Wednesday 1/14/26
- Insurance issues to support out-of-state clinical trials
- Applying and acceptance into clinical trials that are appropriate for me
- Meeting with Hoag in Orange County for a clinical trial consultation on Thursday morning 1/15/26, then I dash up to Santa Monica to detach the chemotherapy pump I am on for two days. Please pray I stay alert while I make the drive as I’ll be pretty tired from the chemo.
- There are a number of people (like you) praying for me. Please take a moment (as I try to do) to pray for them, their caring hearts and their own situations
- Possible travel in the future
Birthday
It’s my birthday month. And as many people are giving me birthday wishes, this year seems a little different. Normally I don’t like birthday attention, but this year, it’s giving me pause to be really grateful for another year on this planet. I think many people with my disease deeply realize how fragile things are. I spend time with friends who I’m not sure when I’ll see them again.
Wendy, from my group wrote this in a group email wishing me a happy bday:
And yes, birthdays should be celebrated. In the rest of our culture, they are often downplayed and hidden – like getting older is some sort of crime. Here, in this community, we understand getting older is a huge gift – a privilege that, heartbreakingly, not all of our sisters and brothers are granted.
So I’m trying not to take my birthdays for granted. And I’m trying not to take their birthdays for granted as well
So, Happy Birthday to you too!
P
Thanks for the update Peter. Praying for you brother!