Life Choices
I’ve been thinking about typical life changing decisions.
I think of the stress that I and others have experienced in the seasons when choosing a college, scholastic major, or maybe a job. But with some age and perspective, I realize how many people I know ended up changing their school of choice, area of study, and quite frequently didn’t end up working in the field that they started out pursuing.
The choices I’m facing are in a different situation now. As I’ve said before, I’ve exhausted all three of the currently FDA approved chemotherapies available for my pancreatic cancer. I am now in the land of experimental research drugs. And the clinical trial that I enroll in seems a little more life-affecting than choosing a college major.
Update… I am no longer in the trial
This has been a very fast moving week.
In mid-January, since my chemotherapy was losing efficacy, I stopped receiving standard care chemotherapy in preparation for pursuing clinical trials. Since then, I was screened, accepted, and enrolled in a clinical trial that required an infusion only every three weeks. Six weeks and two infusions in, and after experiencing some side effects, I had a CT Scan which showed my tumors have still been growing.
This last week, while sitting in my infusion chair, ready to receive my third treatment, I was informed about my tumor growth.
I’m glad I wasn’t there alone. My primary caregiver heard the news from a nearby chair as I calmly nodded as if I was fully understanding why I was being taken off the study and what the next steps could be… but I think I only absorbed half of what was being said.
In mid-January, when I had met the man giving me this news, my Hoag oncologist, he had suggested three clinical trials with no strong preference among the three. Due to availability, we had chosen this trial. Now he was going to see about one of the two other trials as our “Plan B”.
A research coordinator would contact me in the next 24 hours to see if there was availability. I asked if I should be pursuing other avenues for clinical trials, and with his eyes wide and large, he leaned in and said, “Yes, definitely.” As he kept talking, even though I should have been paying more attention, I was busy emailing my UCLA oncologist, the “quarterback” for my treatment.
I calmly engaged with the medical staff as we discussed potential next steps and they took the not-going-to-be-used-today-for-chemotherapy needle out of my chest.
We shook hands, and my oncologist said, “Good luck, and I hope to be seeing you soon.” It hit me. Oh… this may be the last time I see him. Wow.
An hour prior, my concern was navigating traffic to Newport Beach. Suddenly, I had no idea where I would be treated next, and I have to start considering going out of state and everything all over again, and I’m realizing this while still sitting in this chemo chair!
I immediately emailed more doctors. I was sooooo thankful that I had done all the legwork the previous months. Now is the time that I was going to reengage those previous “second opinions.”
I was very grateful I wasn’t alone, and I was with someone who knew the gravity of the situation. We both calmly walked back to the car, collectively supportive, frustrated, and disappointed.
I realized my sadness was obvious when it was suggested we go to Knotts for fried chicken. I had sometimes requested this nostalgic meal choice on our return trip, and now it was being offered without my prodding. Even though I chose for us to dine somewhere else, I appreciated the kind gesture.
Over the next 24-48 hours I was contacted multiple times by the (new to me) research coordinator to tell me the sponsor had made a slot available to me. Now I would have to be screened to see if I qualify.
Three of the local research institutions got back to me and were scheduling appointments to review what they had to offer.
Current Situation
This week, I have quite a few medical appointments to either screen or consult on new clinical trials.
Just as with this recent trial, no one knows how or if my tumors will respond to these test drugs, but like they say, you miss 100% of the shots you never take.
Akin to trying to adopt a pet, finding a new home, or choosing a job, I am looking for a “match.” If you’ve been following this blog, hopefully you understand there is currently no miracle cure for this cancer and we’re trying to extend my lifespan, whether that means months or longer, and it’s a hard road. I want to stick it out as long as I can for myself and those who follow behind me.
Hirshberg Symposium
On April 11, I served on the “survivor panel” at the Hirshberg Symposium. Quite a few members of our Zoom support group attended, and it was the first time for most of them to meet each other in person. It was so great to see many friends and give them actual hugs. We took the largest “survivors” photo I’ve seen for this event.
During the presentation, a surgeon was talking about a new procedure that is rarely performed in the US. I turned around and pointed to my friend across the room and he nodded. He had that surgery just a few days ago at UCLA, and it was by the doctor making the presentation. I am so thankful for the Hirshberg Foundation for promoting research as well as community.
Prayer Requests
Please join me in prayer:
- To find a good clinical trial, and for me to have the patience and wisdom to choose the best one, most importantly, the one that God wants me to participate at this time
- For me to trust God in the logistics of participating in that trial
- For me to continue to see “where” God wants me, and to trust Him in what happens next. I have been privileged to listen to and sometimes pray for many cancer patients over the last few years. People have been very trusting, vulnerable, and transparent when we talk.
- To stay grounded in reality, to have hope in miracles and have peace, trust, and purpose in the meantime
This is a very complicated life I’m living. When I meet with people with this disease, it hurts all the more when they pass. But in meeting them, we enrich each other’s lives. It’s also scary to take a chance on a clinical trial drug, but I want to participate just in case there’s a chance it will improve things. I’m surrounded by loved ones, but sometimes I feel the solitude of making my choices when it comes to my healthcare. I believe I have an always-present God and yet sometimes I can feel alone. All these things are true. Life isn’t often one thing without the other, sometimes all these things travel as a package deal.
P
