This has been an interesting week. Starting with Monday, Labor Day, a national holiday in the US. I decided to try an experiment and stop taking my vicodin. My as-needed pain regmin currently consists of taking Ibuprofen every 6 hours and Vicodin every 4. I had noticed that for some time I was taking both at the same time, every 6 hours, on the same schedule and that I was not taking the Vicodin every 4 as allowed, and I wondered if it was still actuallly even needed. So I decided to stop taking it starting Monday afternoon and all the way through Thursday afternoon.
At first it seemed to work just fine. The Ibuprofen alone seemed to be enough to keep the pain at bay. The first 48 hours went smoothly without any complications. The next 24 were not as smooth. Wednesday afternoon I had pain that persisted even after taking the Ibuprofen. It was rellatively mild, but it was pain nonetheless. It was enough that I left work early in order to beat the traffic home so that I could try to find more comfort at home to finish my work for the day. I was in a fair amount of pain by the time I got home, but was due for another dose shortly after I arrived and it seemed to bring it down to tolerable levels. Thursday, I had the pain throughout most of the morning and by mid afternoon, decided to go ahead and take the Vicodin again. It took a while, but my pain did subside once again.
I don't yet know what that means as there have been a lot of variables in play this week, any of which could have affected my pain levels. I have now been back on the Vicodin for about 36 hours and at the moment, I am up late writing this in a fair amount of pain just waiting until I can take another dose of both. Perhaps I'll try the experiment again if I get things back under control again.
Tuesday I had my monthly check in with my oncologist. There was nothing new to report on that front as everything has been going pretty well of late and my last blood test had not shown anything of concern other than my PSA had gone up a little over the previous month to 3.57. He decided to do another blood test, presumably because my PSA has been going up. When I went back to get the blood draw and my monthly Adamantium shot, as I like to call the Xgeva shot, the person who admninstered the shot gave me the most painless one that I've had so far, I barely felt it at all, but then she overshot my vein when trying to draw blood and was unable to get any. I became dizzy as a result and had to sit back for a little while before they could try again. They brought me ginger ale and chocolates, as well as a damp cloth to put on my neck, to help the situation..
I haven't had that happen in a long time. In the past, I could pretty much count on getting light headed after a blood draw every time. There have been several occasions in my life where I have passed out after blood was taken. It had been a whle since that had happened. With alll of the IVs and blood draws that I've had since I was diagnosed, I've been surprised that it hadn't happened yet so I guess that I was due. Anyway, after a few minutes rest and refreshment I was feeling OK and ready for them to try again. This time they called over the phlebotomist to do it and it went without a hitch other than my flinching when he said "1, 2, 3, now" as he stuck me. Because of the whole potential for passing out, I don't watch the procedure, ever, and I prefer not to get the play by play. Just let me know when you are finished and I can turn my head back.
With a bandage wrapped around each arm, I then headed down to NIH to get more blood drawn. That went pretty painlessly except that phlebotomy didn't have an order in the system for my blood draw and they had to track down my study nurse to get one. After that, I went home and caught up on work. A long day, but mostly painless running on Ibuprofen alone.
Wednesday was just a day at work with nothing exceptional happening other than the pain started creeping back in by the end of the day and I left early to mnimize the amout of time I had to be in the car, but after I got home, things went back closer to normal.
Thursday was another doctor day which started with my radiation oncologist's office calling and waking me up at 7:00AM to inform me that the doctor had a conflict at 3;00 and couldn't make my appointment with him. They offered me an 8:00AM slot so I took it and raced to take all of my morning medication and get ready to go. My meeting wth the radiation oncologist was uneventful. He said thta the MRI had not shown any change worth noting and asked me to wait 6 months this time before checking in with him again. Then I want home to work for a while until my next appointment for the day. Since I had already reserved 3:00PM on my calendar for my original appointment time with him, I called my accupuncturist to see if they had that time open. I had had to cancel my appointment with him for Friday becasue we were going out of town with the kids and I didn't want to skip the whole week without seeing him. Fortunately they had 3:00PM open and I went to get poked following my first Vicodin in 3 days.
After accupuncture, I went to see my pain management doc and told him everything that had happened including the Vicodin experiment. He took it as a positive sign and said to continue trying to cut back here and there where it felt appropriate. He said that he felt really good about my progress. Also, because he's part of the same hospital system as my oncologist, he had access to my blood results from Monday and reported that my latest PSA was back down to 0.99. I don't know if that's due to being on the Abiraterone for this study or if it's just normal unreliable fluctuations of PSA, but I'll take it eiher way. I've been seeing the pain doc once per month, but since things are going so well, he didn't see a need to continue that and asked me to come back in two months.
Here's where that whole thing about feeling miserable the day after seeing the doctor comes in. First, I was feelling fine on Tuesday when I saw the oncologist after having dropped the VIcodin. The next day, I had to leave work early due to pain that was ignoring the Ibuprofen. Thursday I was in some pain most of the morning, but then went ahead and took a Vicodin before going to see the pain doc and felt fine when I saw him, then Friday was a day of pain.
Friday was my oldest daughter's birthday. She turned 6, or 6 fingers as she responds to anyone who asks. So I woke up Friday morning, took my medications and waited for the usual morning pain to subside. It took a little longer than normal to the chagrin of my new 6 year old who we had promised to take to IHop for her birthday breakfast. I finally felt good enough to go after a couple of hours so we went for breakfast. I wasn't 100% but I made it ok. We had agreed to take her down to Great Wolf Lodge for her birthday so when we got back from breakfast, we quickly packed up for the overnight trip down to Williamsburg. My lower back hurt for the entire trip down there. It wasn't excruciating, but it was just enough to be uncomfortable all the way down.
After we got there 4 hours later, I felt a little better once we got out of the car and I had an opportunity to walk around a bit. The girls were eager to get down to the water park, so we checked in, changed clothes and went down to the water park. I had noted as we were changing that it was time that I could take another Vicodin if I wished but in all of the chaos of getting 2 adults and 3 girls ready I forgot to take it. I was OK for the first two hours in the water, but the last one was coming up on time for another dose of Ibuprofen and the pain started setting in. By the time that we got back to the room, it was bothering me pretty good. We changed, I medicated, and we went to dinner. We were halfway through our meal before I felt the medication do its job. I felt better, but not all the way. There was still some pain that was ignoriing the medication. I was sleepy and started feeling like nodding off by the time we got back to the room.
After we got everyone into bed, I attempted to do the same. I think that I had just gotten to sleep when the baby cried out. I woke up only to realize that I was feeling pain and it was too much to go back to sleep. Since we were all in the same room, my options were limited for sitting up and dealing with the pain. I had brought my heat wrap, which often helps in this situation, and the room had a microwavve that I could heat it in, but I didn't want to figure out an unfamiliar microwave in the dark and potentiallly wake everyone up with the noise, so I sat in the corner by the door, basking in the glow of my iPad and started writing this. The pain at that point was pretty strong in my lower back and thighs. I found that if I applied pressure to my thighs that it felt momentarily better, but it was little comfort. I tried laying on my back on the floor and that seemed to help some. I'm not sure how long I laid there but I started to nod off and took that as a sign to go back to bed.
The baby woke us up at her usual 4:00AM request for feeding which meant that I woke up and was suddenly aware that I was in too much pain to go back to sleep, but that it was also a couple of hours past time for me to take my medication. So I'm up, waiting for them to do their thing. Hopefully I'll get to go back to sleep for a couple more hours. I'm not sure what's going on with this pain today. There are a lot of variables involved. I'm wondering if some of this is from exerting mysel in the water park. There are a LOT of stairs up to the top of the various slides, maybe that explains the pain in my thighs.
Hopefully Saturday will be a better day on the pain front. We've got a full day in the water park followed by the return trip home. I hope it goes a little better than yesterday.
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