As I stated in the last entry, this will be a post that is updated as information comes in about my health. If you found your way here, that means you read the last one and are somewhat interested in what’s going on. We appreciate that. The latest updates will always be on top, so they will essentially be in reverse order.

The first update was made on 8/4 and is the are ten updates so far.

3/18/25

A lot has happened since the last update. For now, we’re in a pretty good place, but it got a little scary for a bit. First things first, the last Signatera taken on February 5th dropped again to 1.85 from 2.07. Not a huge drop but moving in the right direction. The CEA from the same day was down to 26.2 and that was down from 75 on 12/27. So, the cancer markers had been moving in the right direction. However, I have not had treatment since February 5th. Tomorrow (3/19) I go in for my first treatment since then. The issues started on Sunday 2/16, and I’ll try to consolidate the story to the important points. Jenifer and I were in Galveston with the 5th Wheel. That morning, I had quite a bit of blood in my urine. With our situation, which is not common and is something that needs to be checked out. So, we went to an ER in Galveston. A couple of hours before we left for the ER, I also started experiencing severe abdominal pain. By the time we got to the hospital, the abdominal pain was a bigger problem than the blood. They put me on fluids and IV antibiotics. They ordered a CT scan. Shortly after that, I filled up one of those hospital emergency vomit bags. A few hours later they told me I had inflamed ureters that caused the blood, and my digestive system showed quite a bit of backed up stool. Two separate problems. They prescribed an antibiotic and some anti-nausea medicine and sent me on my way. While walking to the exit, I needed to unload again into a nearby trash can. The abdominal pain did not subside at all. I could not get comfortable and barely slept that night. All day on Monday I never left the trailer, tried to nap when I could, but the pain and for some reason, hiccups kept me from resting. I had not eaten since Sunday morning and the thought of food never even crossed my mind. I threw up a few more times. We headed home early Tuesday morning. I had been in touch with our oncologist, and she wanted me to come in for fluids that afternoon. We did that and it helped some. She prescribed some different medications, one to help with the hiccups, but nothing helped much. We went back in for fluids on Wednesday, Thursday, and Friday. I did get some small meals down when I forced it, but the pain didn’t go away. Saturday morning, I ate some crackers and lost them within an hour. After vomiting twice on Sunday, we made the decision to go back to the ER. This time the CT scan showed something. There was a small bowl obstruction. Possibly caused by scar tissue from my bladder removal surgery. Because of that location, my urology surgeon needed to be consulted. Long story short, because the 2023 surgery work was in the same area, I was transferred to the hospital in Houston where the original procedure was done instead of one closer to home. We arrived there around 10pm on Sunday. They ran a tub through my nose to my stomach to start getting the contents out that were on the stomach side of the blockage. Monday morning, we were told the plan. Surgery was an option, but the potential complications with my urostomy made them want to wait to see if the blockage would clear on its own. On Tuesday they did a contrast study where they sent a liquid down the tube to my stomach and took a bunch of x-rays over several hours to see if it was getting through. They had taken the suction off the tube to keep the contrast in there. There was not any movement past the blockage and on Tuesday night I started vomiting again. Wednesday morning the surgery team came in and said they would do one more X-Ray. If the fluid had not passed, then they were going in. The surgery happened that afternoon. Fortunately, it went as well as it could have, and the urology team did not need to get involved. The two things that needed to happen for me to go home were that my pain was under control, and I had bowel movements. That was accomplished by Sunday morning March 2nd, two weeks after the Galveston ER visit and one week after being admitted. I’ve spent the last couple of weeks resting, recovering, and trying to get back to normal. I guess this was not as invasive as the bladder removal, because I feel much better after three weeks out from surgery. My biggest challenge is limiting my activity for three more weeks – the recommended recover period for abdominal surgery. So overall, quite the adventure, but it had nothing to do with out-of-control tumors or anything like that. We’re extremely grateful for the care we received from all our doctors, the nurses and everyone else that helped us. We were told there was nothing that we could have done to prevent the blockage and it’s not all that uncommon after major abdominal surgery. Moving forward, we at least know what symptoms to recognize and if they did present again, which hospital system to go to.

1/14/25

There was one more update that I forgot to post. A week ago, on 1/7 the results of the 12/27 Signatera came in. That number dropped from what was actually 86.85 to 2.07. A pretty substantial decrease especially considering the blood was taken before treatment #2 and was 2 weeks and 2 days after treatment #1. Additionally, I had been feeling some discomfort in my lower back near my right hip that had showed up in June and progressively got worse. By October I went to see an orthopedic doctor and did a few sessions of physical therapy. By November I was taking a lot of Tylenol and Advil to manage it. Over the Christmas holiday, it started improving. It has improved to the point that I’m no longer taking anything for the pain AND I have been able to resume light exercise the goes beyond what the physical therapist recommended.

12/28/24

We hope everybody had a great Christmas and that 2025 is everyone’s most successful year yet. We sat through treatment number two yesterday and had a PET scan a week ago. We saw the results and it does show activity. We meet with our doctor on Monday to get a better idea of everything is showed. This is not a surprise with the tumor markers going up. Speaking of those, the blood test on 12/11 showed a CEA in the 156 range. Yesterday that number had cut more than in half to 75. To those out there praying for us, thinking good thoughts and hoping for our health, thank you. I know it is part of the reason we are going to win as many times as we need to to stay in this game for a long, long time.

12/7/24

For transparancy and to elaborate on the last post, the CEA number is in the 60s – higher than when I was first diagnosed. The Signatera exponentialy squared itself going from roughly 9 to roughly 81. We will be adding some of the chemo infusion treatments we were doing the first time around starting Wednesday 12/11. This will be added to the oral chemo pills I take and the immunotherepy infusions I’ve been receiving since September. We’re going for another PET on 12/20 to see if any hot spots have started to form. Right now, as one doctor put it, we have a lot of ants but no ant hill.

11/21/24

The CEA markers and Signatera numbers have increased substantially. I’ve been on the medication for two months now. It would seem that if the numbers don’t start reversing that we will need to try something different.

10/7/24

Had a PET scan done last Thursday (10/3). Our doctor (who is on vacation) emailed me to say “it looks stable” and “this is a great report.” Box checked. ✔️

9/25/24

We finally started treatment this month. An oral chemotherepy medication taken one week on and one week off. I’m currently on the second cycle. I started immunotherepy infusions a week ago and will be doing those every other week. This is the backup plan discussed in the 8/25 entry as insurance did not apporve the drug she preferred.

The most recent bloodwork included both Signatera and CEA. Both are up from previous levels. There is a PET scan scheduled for Thursday 10/3.

That is the data. As for me, I’m living my life and working harder than ever. The treatments and doctor visits are items on a to do list that are high priority. I’m staying active, eating healthy and camping every chance we get. I’ve lost another twenty pounds over the last five months, but only because I have gone on a very low carb diet – which is something I recommend to pretty much everyone. At the very least, you should consider cutting sugar and processed foods. Nothing good comes from those.

8/25/24

We saw the doctor and did bloodwork this past Wednesday 8/21. With the CEA rising (now up over 10), we will resume treatment in the next few weeks. The oral medication she prefers is still in pending status with the insurance company, but a final decision is due by 8/30. If it is not appoved, we will go bact to a regimin I was on at the beginning of the year that included immunotherepy infusions and an oral medication. Either way is fine with me.

8/9/24

We did bloodwork on Wednesday 8/7 and tested for CEA again. It was up to 8.0 from 6.3. While it’s not trending the way I would like it to, it’s good to have the information as a reminder to keep doing the right things right. The next appointment is on 8/21.

8/4/24

During our last visit to the oncologist on 7/24 we did blood tests, two of which give tumor related information. One was another Signatera. That level was 3.82 – Down 63% in six weeks from 10.42 on 6/12. The other was CEA. This one was actually the highest it’s been since April of last year. We came in at a 6.3. We had not done one since 5/29 and that one was 3.2. For some reference, We had been negative on Signatera in all tests leading up to 5/1. For CEA, the normal level is considered at or below 2.5 for non-smokers. We had not been testing for CEA as much since we started Signatera. The two done previously this year (3/20 & 5/29) were at my request. Below are images showing the results from every time I have had each tested previously.

My unprofessional interpretation is that the CEA would be elevated with the higher Signatera results. I would love to go back to see what they were on 6/12 when the Signatera was high, but what’s done is done. The good news is the decrease on the Signatera. With these results, I’ve asked the oncologist if we can start testing CEA every other week. The decrease in Signatera happened without any medicine being taken at all. But we only test that every six weeks as it’s done by a specialty lab. The CEA can be done with the rest of the local bloodwork. I want as much real time data as I can get my hands on.

The track that I’m on, organically, is beating this stuff down. While I’m ready, willing and able to take drugs, why do it if I don’t need to? Our doctor has agreed to the increased testing. Insurance has still not approved the oral medication she wants me on and she had been ready to put me back on the chemotherapy regimen I was on last year if it doesn’t get approved soon. In the meantime I am doubling down on the steps I’m taking to be healthy. That’s all for now. Thank you again for taking the time to read this.