August 12, 2025
Since the end of May, until mid June, I did what I said I was going to do: care for Rita, get a dumpster and clean out years of being poor, play some pickleball and try to figure out and plan for the future.
After my liver surgery, I did try doing Chemo from May 2 to 14. This was a chemo pill called Capecitabine (Xeloda). Side effects started early and I gave it up a day short of the final dosage. The diarrhea continued until I got so dehydrated, I ended up in the ER. This was not managed well and resulted in two trips to the ER to fix the side effects. It finally got resolved and soon, on June 17th, it was lung surgery time
I got a call from Dr. Levy’s nurse the night before to tell me that the doctor had looked at the recent CT scan (done May 1), and based on what he saw, he may have to change his plans. The morning of surgery, he admitted he saw something on he new scan tha concerned him to the point that he may not be able to remove the section he planned.
What he found was lots more cancer. Cancer had metastasized from the liver to the lung. He took some pathology slices,buttoned me up and sent me home.
The cancer is now officially stage 4 and I transitioned into a palliative care patient. I started planning for my death.
As soon as I could, I made a trip to CO to deal with my brother’s and sister’s ashes as well as see Adam.
Rita and I want to Topsail Beach to see a Jazz event.
I agreed to start chemo treatment to buy time and some quality of life. My first treatment started July 15. I had Gemzar and Keytruda (They withheld Cisplatin because my kidney functions were too low). I tolerated that week with mild side effects (diarrhea) and in Week 2 had only Gemzar (they withheld Cisplatin again, this time because I told them of my low heart rate). It also went relatively well.
By Week 3, my off week, I got cleared by my cardiologist to have Cisplatin.
It was the Sunday before my second round of Chemo, Aug 3 that the side effects came back. I thought the constipation caused by the Chemo was finally over, but my BM turned to diarrhea instead.
It felt just like back in May and as I tried to get it under control with the meds the docs suggested, I canceled the start of the second round of Chemo.
By Aug 6 after trying to get home palliative care to help, , I started calling in the docs for help stopping the diarrhea. It took until later that week before I got the RX for lomotil. That stopped the diarrhea.
Then nothing.
It’s not unusual to go two days without a BM after this, so I waited. As the weekend approached, I thought about the next chemo date, Aug 5. I did not want to do another chemo if I was still reeling from the side effects from earlier treatments.
I spent the week trying to recover. On Aug 1, I Wwent to see the Radiology oncologist who wanted to treat the one big nodule in my lung, but we agreed this wasnot an urgent decision.
Sunday night, Aug 3, I got real bad. Called a friend for help. I should have gone to the ER, but we tried to get attention via docs and failed. As the week progressed and my health care friend tried to help me navigate the system, I got sicker. I was bloated and started throwing up this vile stuff that I later found was liquid poop.
By the next Saturday, Aug 9, I was in serious trouble. Jesse(who arrived the night before with Jen) and I sat on the porch talking about dying, cancer, and how to care for Rita after I died. Then I contacted my GP, (Jen Good) via text and had a phone call with her.
An hour later, I decided to go to the ER at IRMC. That decision may have saved my life this time.
They found an obstruction, put in an NG tube so it would drain the liquid poop, instead of me throwing it up, and started IVs to keep me alive. They admitted me, and started a journey down another side road to see how bad the obstruction is and the cause. A surgeon, Dr Guddeti, took the lead.
It’s now Aug 12. I’m still in the hospital. Feeling much better. Still not passing anything but gas. Today the docs willl discuss options for this obstruction thing. One willl be basically exploratory surgery. I don’t know the others.
This cancer road is very rocky. Add in taking care of Rita, and it is not something I can handle. My cancer road ends with my death. I want to go there gracefully, peacefully, and with dignity. This obstruction road is not the path I want to take to my death. It does not fill any of the criteria I want.
Navigating the health care system in the US, especially in rural US, is not easy. You have people with real hearts trying to keep you alive, but their agenda is not always yours. You have overworked doctors, nurses, and others, who will not spend the time to understand your full situation before recommending you take this, or that, go down a side road to some destination that is not your agenda.
You also have the crazies who think you can cure cancer with rat poison, kale, and other strange treatments. You have folks who have been stage 4 for years and are trying to show you hope and a future. You don’t have too many folks offering to wear your caregiver’s shoes to help your wife down her Alzheimer’s road to her death. That road is also very bumpy, filled with potholes and its own world of medical confusion.
Today, I feel, my head is finally clear enough that I can write about this stuff. I haven’t been able to do this for months.
Why?
Sleep, knowing Rita is in good hands.
If I’m going to go gracefullly, I need help.
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