Hello folks. This is a much last minute post and prayer request.
Since the recent rise and fortunate subsequent fall (down is good news) in my cancer markers, it may prove to have been a “blip.” But in all reality, there will likely come a time when this current chemotherapy I’m on will become less effective.
At that time, one of my prominent options will be to seek out another clinical trial.
I’ve learned that it’s best to contact the researching institutions sooner then later, and give them full access to my medical records, because this whole process takes time (sometimes weeks). So I’m reaching out to two local hospitals, City of Hope and Cedars-Sinai to connect or reconnect with their pancreatic focused oncology (cancer) staff.
I’d rather jumpstart this communication when I’m not in panic mode if at all possible. Now is such a time.
Prayer Request
Currently I’m scheduled for :
City of Hope Wednesday 9/10/2025
Cedars-Sinai 9/25/2025
If you could join me in prayer for
- Me preparing the necessary information for them to look into any clinical trials that they may offer or be aware of.
- The medical staff being creative and open in their trying to match me with potential trials.
- A collective discernment of myself, my oncologists, and my MRT (core team of four friends throughout this journey) when considering any choices that may present.
- Logistical transfer of reports and medical records to the required parties.
Sorry for this hurried post, but I’ve been so focused on dealing with some of the chemo side effects, starting chemo today (Tuesday) and ending on Thursday, that I totally forgot to get some of the reports ready for the meeting tomorrow. I’ve printed them out and hope it’s enough, but I could have done more.
Thanks!
By the way, as much as possible, I will still be pursuing trials and receiving care at UCLA.
PS As much as I’ve been praying for years… and as I’ve mentioned before that since my diagnosis, I really am aware of feeling simultaneous feelings….
I was scrambling and looking for my CT Scan CD. I like to carry one in my “go” bag for the hospital, as well as have one on hand for doctor visits. I couldn’t find either.
It was late and I was tired from the chemo. And then I did a quick prayer of “Lord help me find it.” Literally less than five seconds later I found the CD in a stack of things that didn’t make sense. I felt confusion, relief, frustration with my chemo brain, a moment of self-doubt, and yes, gratitude, all in no particular order. Oh yes, and I was both amazed that prayer works and also I shrugged my shoulders like it was no big deal. So thanks God for answering prayer, something that should come second nature, or maybe “first nature” to me, if there’s such a thing
PPS
Oncologists control the chemotherapy the patient receives, and they’re often a combination of different medicines administered at the same time. They can change the ratio/cocktail as they see fit, based on how the tumor is responding, but largely based on the patient experience of side effects (I’m sure there are other factors, but let’s go with these).
Neuropathy, a side effect that I didn’t/don’t fully understand is one of the side effects they keep an eye on, and will often reduce the metal-based medications in the mix, sometimes to the point of removing them from the chemotherapy. This means the patient doesn’t get the benefits of that particular medication in favor of reducing the side effects and possibly improving their quality of life.
I have had chemotherapy for two years now. Every single person I’ve met has had a slightly different experience with the intensity spikes, location and pain/sensations of neuropathy. And it’s all subjective when we talk about it. Someone’s pain level 7 could be another person’s 4.
And while it’s important to communicate this with our doctors, there can be underreporting because you don’t want them to take you off chemo. But it’s a conversation/dialogue, or should be.
I have a good communicative relationship with my doctor. And we have adjusted my chemotherapy, with my input and agreement. But that’s not true with every patient-doctor relationship.
Recently, I’ve been having a little more difficulty in my walking. My right foot kind of falls to the ground, in a mild “stomp” motion. It’s frustrating, but I considered it part of my life with cancer and neuropathy. It messes with you physically, but also mentally and emotionally.
I brought this up to my Physical Therapist, and we explored if it is muscle weakness, a nerve issue or something else. He was just as curious as he was a good diagnostician. Within a few minutes of trying different stretches, I had considerably more control over my foot! We think it’s nerve related, and we kinda loosened up something that made it communicate better! I didn’t want him to see me tearing up. This meant something. It meant there was a way out, I had a tool!
Hope (and tools) matter. A lot. I mean a lot. Hope sometimes matters more when you didn’t realize how long you were living without it. The sense of relief I felt was greater than I realized how hopeless I was living/feeling.
So from the patient experience, unless I had pursued physical therapy, communicated and figured it out with my PT, I would have just thought I was continuing in a downward spiral. But nope, I’m clawing the walls of this thing and slowing this down.
I bring this up because my oncologist needs to know what’s going on. I told him, because if my neuropathy experience didn’t have this tool, it could ultimately impact my chemotherapy dosages! I would like to give this chemo as much of a fighting chance as possible!
So I really hope we can all learn about integrating tools and information as well as empowering patients.
And especially understanding how sometimes we don’t realize the hopelessness/stress we’re experiencing until Hope actually arrives in our lives.
You can apply that to physical therapy or a faith experience, quite honestly… I do both (now).
