About 2 weeks ago, some pain in my abdomen started to get worse. But, it was manageable with my pain meds, so I went about my normal business.
On New Year's Eve, about the 4th day of additional pain, I took an overall turn for the worse. I had a fever (103F-105F) and the pain was getting worse. I paged the on call oncology doc, and she literally told me to take two Tylenols and call her in the morning. When I checked in the next morning, the doctor decided that I should go to the emergency room that was closest to me.
I'm not crazy about the closest ER, so I chose to go to the University of Vermont Medical Center instead. That is where I get my local oncological care.
It took forever to get through triage, but once I got through, things kicked into high gear. I got some morphine for the pain, and for the first time in almost a week, I was not in serious pain. Then, the tests started. Multiple CT scans (I don't even want to know my lifetime radiation exposure due to CT scans), a heart ultrasound, leg and arm ultrasounds, chest X-ray, etc.
The early scans showed that I had pneumonia in my right lung. This was odd as I had no symptoms of pneumonia. The CT scan of my lungs showed that I only had one tumor, and not multiples, as they had feared. I was put on Lovenox to help prevent new clots from forming. I will be self-injecting that drug for about 2 more weeks.
Next, we turned to pain management. When I first arrived, it took 4.5mg of morphine to bring the pain under control. The second dose was 6mg and I was still in pain.
The docs really drew a blank on the source of the pain. They said it might be from the pneumonia or it might be from the cancer and a tumor growing. There was nothing definitive.
Once again, as had happened in my last post, I was admitted and they sent out the pain specialists to work with me. They decided to give me a bigger dose of oxycontin, and then morphine for breakthrough pain. The morphine was administered by me using a pump, also known as Patient Controlled Anesthesia. This combo worked well during the day, but it was a flop at night. At night, I would doze off until the pain got worse and woke me up. At first, I was waking up every 2 hours and I was allowed to hit the button every 30 minutes. But, as time passed by, the time between hitting the pump steadily decreased. Eventually, I was awake full time because the pain wasn't being controlled well enough. I really needed to be on pills that would last longer or I needed to have the docs deliver the pain medicine on a fixed schedule through the PCA device. But, that wasn't the purpose of the PCA.
So, we switched back to all oral meds, with some occasional morphine for breakthrough pain. This allowed me to sleep in blocks of 2-3 hours at night and I felt much better.
By now, it was Friday morning. I'd had my fever on Tuesday, and I went to the hospital on Wednesday. We knew I had pneumonia and I was on meds for that. We knew about he blood clot, But, we still didn't know that cause of the pain. Was it from the cancer or from the blood clot? The docs were talking about sending me home on Friday, but I really resisted. I felt that we didn't know enough yet, and going home would mean that we were just guessing as to what was wrong. In the end, the docs agreed with me, and I was cleared to stay overnight on Friday night.
On Friday afternoon, I had an odd exchange with two doctors that I had never met before. They were medical oncologists, but they had never treated me before. They told me that the proton beam radiation with Sloan Kettering would not be happening, but they gave me no reason for this. I tried to have a discussion with them about it, but they insisted that they were going to call Sloan Kettering, talk to my radiation oncologist, and get my radiation cancelled. When I pressed them in their role in my care, they said that they were the attending oncologists and that this was their domain. They didn't defer to my normal oncologist in any way.
I still don't have anything definitive, but I know that one of the docs did call Sloan Kettering to talk to my radiation oncologist there. They left me a phone message without the name or number of the doctor, and asked me to call back. I can't call back when I don' t know who it was that called me to begin with. So, yesterday, I reached out to my local medical oncologist to see if she knew who these doctors are. No answer so far, but I"m proceeding as if the radiation is going to take place.
On Saturday, after a 3 night stay, I agreed to go home. I'm still fighting nausea and a lack of appetite, and the pain is still there, but it's more under control right now.
So, once again I'm dealing with an increase in pain medication. My PCP no longer wants to supply my prescriptions as she feels my dose is too high for her to control. I see my medical oncologist next week, and I'm going to ask her to take over management of my pain medications.
I'm still in the dark as to the cause of the pain. I"m guessing that it's a tumor pressing on a nerve, but it could be the blood clot in the lung. Blood clots in the lung can cause significant pain.
I go to NJ on 1/25 to meet with the docs at ProCure, the proton beam radiation center. My radiation oncologist from Sloan Kettering will be there that day, to work with them on setting up the beam exactly the way he wants it to be delivered.
And, I have to hope that my pain dissipates or at least remains manageable. I'm on the edge right now.