Friday, September 6, 2013

Pain Test

It never fails. Throughout my life, whenever I've gone to see a doctor, I usually feel fine if not good, but the day after seeing the doctor tends to be misery.

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.

Sunday, September 1, 2013

Breakdown

"Daddy, I hope you get better soon and aren't sick any more!" A statement that pierces  my heart.

I had a breakdown today, the first one I've had in months. As I've been feeling better overall it's been easy to leave all of the emotional baggage in the past. Being back in the daily grind has left me without much time for reflection or even cause to reflect, but I guess that I was due as today it hit me pretty hard.

I spent the better part of the day today working in the yard weeding, picking carrots, and finishing a small retaining wall project, not all that much work really. When I came in and cleaned up from doing all of that and sat down I realized that my lower back was hurting and it would be another 2 hours before I could take another round of pain medication. I laid down on the floor in an effort to get more comfortable and ended up nodding off for 20 or 30 minutes. When I awoke, I was feeling like crap. My back still hurt, I was drowsy, and just felt kind of icky overall. My wife suggested that I go to the bedroom and lay down for a while, that I had overextended myself again, and so I nodded and started shuffling off to the bedroom. Along the way, I passed my oldest two girls who were seated on the floor playing a game together. "Can. We go in the tub now?" the 5yr old asked. " not right now" I said. "I've got to go lay down for a while:"

I didn't have to look to see the disappointment on her face, nor did I even hear her response which was likely something like "Aw, we never get to go in the tub." Or "But you said we can go in the tub today!" It didn't matter, I knew how she felt. I had promised them both earlier in the day that we would get in the hot tub some time that afternoon. I had even used it to motivate them to do some work of their own in the yard, especially cleaning off their trampoline since being able to jump on it apparently wasnt sufficient motivation. They had done everything that I had asked of them and had been on fairly good behavior for the day.

Getting to get in the hot tub is a big deal to the girls. It's the closest thing tha we have to a pool and with everything we've had going on this summer, they didn't get many opportunities to go swimming. They also love the hot tub because its shallow depth gives them confidence and allows them to be a little more daring than they would feel comfortable doing in a large pool, plus, it's their special activity that they get to do with Daddy. My wife has had little occasion to get into the tub since shortly after we got it. Between surgeries, pregnancy and the baby, she's been either unable to get in or unable to gain the freedom required to be able to. Thus, the hot tub has become my thing that I do with the girls, but even those events have been few this summer as it was out of order for a couple of months and I've had few occasions where I've felt up for it on a day where both the weather and our schedule permitted it. The girls have begged on a number of occasions to get in and up until today, I've had to deny them every time, even a couple of times were I had otherwise promised that they could.

So as I walked past them into the bedroom and shut the door, feelings of guilt that I was somehow letting them down washed over me and as I laid down on the bed, I started to sob. It wasnt just about my promise to the girls that caused me to cry. As I lay there, I also my wife's comment that I keep pushing myself too hard doing things out in the yard. She's right, of course, but the problem is that the level of activity that I'm able to perform today with which I push myself too hard is but a fraction of the effort that I could have previously put in.

I am so tired of being limited in what I can do. Much like taking the motorcycle for a ride out in the country, doing DIY projects and tasks around the house is what I love doing, it's my hobby. If I were independently wealthy and didn't have to work, I would probably spend all of my time finding projects to do around the house and I doubt that I'd ever run out of things to do. It's one of the reasons that I bought this house with an acre outside of town so that I would have a place that could keep me busy as long as I had the time for it. Now I no longer have the time, and when I do, I don't have the energy or strengh to do everything that needs to be done and that frustrates me to no end. I'm tired of being unable to do the things that I need/want to do and I fear that's not going to change, that this is the best I'm going to feel even if I'm able to keep the cancer at bay for another 20 years, this is the best it's going to be. These thoughts fueled the sorrow that I already felt over disappointing the girls and I continued to sob uncontrollably. 

It didn't help that my wife left the TV on when she had been in the room earlier watching something on tha Apple TV. Now in standby mode, the screensaver had kicked in which meant a sideshow of family pictures streaming from the computer. I laid there and watched as random pictures of the girls from birth to present flowed across the screen bringing back memories of events and activities, some of witch I'm afraid are no longer possible. As pictures of my oldest as a baby scrolled past, I noticed how much my youngest, now 9 months old, resembles her older sister at the same age and I wonder if I will get to make similar memories with her as I did with her sister as there was so much more that I was able to do then.

At some point, I realized that I wasn't going to be going to sleep and somehow my pain was less noticible. Maybe just laying down for a while was all that was needed, so I got up, put on my swimsuit and directed the girls to do the same. They, of course, noticed that I'd been crying and asked me what was wrong. Trying to spit out an answer only made me start crying again at which point my 5 year old came over to console me and said those words "Daddy, I hope you get better soon and aren't sick any more."

I don't have the heart to tell her that there won't be a time when I'm "not sick any more". I don't know if she'll be able to comprehend that fact or if I even want her to know yet, but it pains me every time I hear her say it. How do I tell her that in one way or another, I will be sick for the rest of my life, that there won't be a time when I'm fully recovered and cancer free unless some miracle cure is just around the corner? It's amazing how a simple statement of comfort and concern can have both it's intended effect and can tear at my heart at the same time.

Afterwards I did take the girls out to play in the hot tub for the short time that was left in the day. They were happy and so was I and even though I was out there past the time that I was due to take pain medication, I was pain free the whole time we were in the tub. Lately I know when it's time without even looking at the clock as I can feel the meds wearing off, but somehow while spending that time with my girls I didn't even notice. I'm glad that I was able to keep my promise.