Once again, thanks to everyone who has been supporting me on this journey. I just got the results of my CT scan this weekend…
People matter
Part of having this disease involves dealing with the reality of death. I didn’t realize how my ordinary life would feel immediately threatened from the moment I was diagnosed. Also, in joining a Pancreatic Support group, I didn’t realize how many friends I would make, only to lose some of them within months. Recently, there was discussion within the support group on how to inform other members that someone has passed as it can be heavy and depressing, while still honoring their lives and presence in the group.
This reality is much more tangible and, unfortunately, too frequent. But, I have found part of the pain of missing someone is understanding how they may have enriched your life.
For myself, it’s not so much that I need to be remembered, but I’m trying to identify and communicate to people that they are important….whether it’s a long-time friend, someone sitting next to me at church, or an employee at a store who’s doing a good job, I want people to know they matter.
Recently I lost a friend Ron. We’d sit on these two chairs, get to know each other better, and share Pancreatic Cancer war stories, but often not say anything and just enjoy each other’s company. I miss him but am glad I have those memories.
CT scan results
- My pancreatic tumor seems to be the same size so it’s stable. Whew!
- I’ve always had some trace amounts on my liver, which is part of why I’m stage IV, and they’ve been pretty stable until now. However, the latest scan shows slight growth in some of those masses.
The good news is that the growth was so minimal that my doctor believes it doesn’t meet the standard definition of “progression” or growth. There’s also no sign that my tumors are developing resistance to my current chemo, so I’m staying with my current treatment for now.
Because I’m not on a clinical trial, we have more flexibility and options to address this. I’m going to schedule an ablation procedure as soon as possible to treat the liver masses, although scheduling may take a little longer because of the holidays.
By the way, UCLA is no longer recommending oral contrast (barium sulfate) for CT scans. This is a new protocol just within the last couple of months. Apparently, their studies showed there wasn’t that much of a difference between oral + IV contrast vs just IV contrast. Plus, I’m sure it’s a cost saving thing too. So if drinking the contrast had been an issue for some patients, this may be great news for them.
Clinical Trials
As mentioned in my prior post, I’ve been pursuing an out-of-state clinical trial. They were moving quickly to try to get me approved, but then I hit a roadblock.
It appears my insurance, a PPO, does not cover non-emergency medical procedures outside of California. I spent hours on phone calls almost every day last week trying to see if that’s true and if there are any avenues available to allow an exception.
With each call, it seemed more likely that my out-of-state participation would be denied. This was surprising to me, but after contacting multiple out-of-state trial sites, I learned that it’s more common than I expected.
Fortunately, I live in a region (California) where there are many clinical trials and research institutions, so hopefully I’ll find one within the state.
I’m speaking with insurance brokers and also looking to see if Medicare is an option that may cover me out-of-state. I’m not quite of Medicare age, but they often make exceptions for critical illnesses like cancer, so we’ll see.
Potential travels
Trying to schedule the medical procedure, combined with handling insurance matters, and making related decisions have disrupted my schedule and may affect my plans to take a short trip at the beginning of the year.
Perspective
When I got the news about the liver masses growing, it was unsettling. A bit frightening, but mostly sobering. It’s a reminder that I’m living with a serious disease that requires ongoing management.
I have a friend, who happens to spend some of his time in a wheelchair due to a stroke. The other day, he was saying I have a good attitude in the midst of my cancer. I smiled and turned to him and noted his chair and said, “You’re like me, what else can we do? Give up?” He replied, “Exactly!” and we laughed.
I so appreciate having people to walk beside me in this process. I have to remember I’m not alone. But the fear and unrest is very personal.
I’ll be grateful to get onto a clinical trial. If not, I’ll know that I tried and will be at peace. Faith helps a lot in that regard. The same goes for pursuing insurance, travel, or even something as small as finding an open handicap parking spot. I trust God with all of my life, but part of that includes praying, and including you in that process too.
Prayer requests
Please pray for:
- Ease in scheduling the ablation procedure, and when it happens, that the procedure goes well.
- More clarity on how my current insurance works out-of-state for clinical trials and whether switching insurance companies might be necessary.
- Guidance on the need for Medicare and acceptance if I apply.
- Wisdom about whether now is a good time to take a trip.
- Effective management of my tumors and any pain.
- Insight on how to bless people with the time I have.
This has been quite a year. I can’t believe the L.A. Fires were almost 12 months ago. Funding for many clinical trials has been pulled back, directly impacting me and others in similar situations. The Dodgers won an amazing World Series. Through all of the many things that have happened both personally and in this world, I’m thankful that I’ve been alive to experience some of it with you.
I hope you have a wonderful new year’s celebration and enjoy the company of your friends and family!
P
