So just when we were ready to resume a somewhat normal, quiet couple of weeks with no events, visitors, or major plans, things took an unexpected turn last Tuesday at 1:00am, when I began to experience increasingly and severe pain in my mid to lower back and both thighs. It reached the point that Mary had to call the hot line for the Oncologist in the middle of the night. I ended up checking in to the hospital and connected to a morphine pump to deal with the pain. By 4:00am I was able to sleep so I told Mary to go home and get some sleep herself.
I was already scheduled for a bladder scope on Wednesday (the 16th) to see if they could determine why I was continuing to experience blood in my urine, and perhaps if the bladder was the source. While performing the bladder scope they cauterized a few smaller, older lesions on my bladder and completed an additional procedure that took pressure off my urethra that was being caused by my prostate. During our consultation with the surgeon, Mary asked if they could also replace the stents during the procedure, to give us an additonal three months before they have to be replaced. (I have had them for one month). They said if it did not cause too much bleeding, they would do it, and they did. Wednesday morning was filled with test after test (vitals, blood wor,k etc) and more discussions with Oncologists, Urologists, residents, nurses and more. What little sleep I had gotten was interrupted and short intervals. Though the back pain and leg pain had gone down considerably over night, I was weak from the general anesthesia and unable to have an MRI, as I could not lay flat on a table for 45 minutes to an hour. Even with the morphine, the pain was too intense to lay flat. The doctor had ordered an MRI to try to determine the root cause of the increased bone pain. We tried again on Thursday morning but the results were the same as before, too much pain. What made matters worse was Thursday morning they gave me a steroid (Dexamathasone) hoping this would help alleviate the pain. All it did was make me unable to sleep Thursday night. I would guess in total I may have gotten two hours of sleep Thursday night. I did doze off every few minutes during the day, as Mary sat at my bedside. Apparently, the combination of the anesthesia and the morphine made me very lethargic.
By Friday we threw in the towel and the doctor proposed that we have a CT scan to attempt to find the source of the pain in my back. Then, if there was an area they needed a closer look at, then we could try an MRI on a smaller area that would not require so much time on the table. The CT scan showed some increased activity in my lower spine but no consolidated area in the vertebrae that warranted radiation as an option to relieve the pain. The plan by Friday afternoon was to insure any remnants from the surgery were healing and then to go forward with pain medication to manage the pain. My PSA has been steadily decreasing since I started the Zytiga. It was at 2,770 mid April, and Monday was at 1300. Obviously, still way too high, but moving in the right direction. What gives us hope is that we will continue to see a response from the Zytiga, consequently some shrinkage in the cancerous tumors and then less pain and then less pain medicine! That is our hope.
The next challenge was to transition me from morphine to oxycotin. They increased the dose of oxcotin and started to reduce the morphine. The doctors monitored this closely, as we did not want to go home and then have a relapse of severe pain. By late afternoon on Sunday Mary was driving me home and I felt like I couldn’t get there fast enough. It is so good to be home!
Over the last three days, my sleep is getting better. I am trying to limit the amount of pain meds I need for the break through pain. I am taking extended release oxycotin around the clock. I continue to have edema, so I have to keep my legs elevated a good part of the day, but feel a little stronger each day. Mary and I even went for a short walk around the block on Tuesday. There is a lot that lies ahead of us, but for now, we are focusing on recuperation and taking it one day at a time.