Friday, March 8, 2013

A Week To Be Misremembered.

This week was a very long one and not a particularly good one from a health point of view although on a personal level it was a pretty good one.

After my bizarro weekend, Monday started out as much of the same. Woke up with pain in my hips and my left leg that persisted through much of the day and through much of the medication. I called my pain management specialist to let him know how things were going. I mentioned my uncomfortable weekend and the fact that the drugs didn't quite seem to be working. I left this information with his assistant/receptionist/notsureofherjobtitle as per usual and assumed that he'd call me back at the end of the day as per usual. Instead I got a call back from the assistant/receptionist/whateverherjobis who relayed a message from the Doctor which was to keep doing what I've been doing and call back on Friday to let him know how things are going. In other words, no further adjustments to medication at this time.

I had my oncologist appointment that afternoon and got my Adamantium shot afterwards. I didn't actually see the oncologist, but saw his nurse practitioner instead. It was a routine follow up, so I didn't really need to see him anyway. I did have a breakdown while seeing her. Apparently I had at least partially misunderstood in the beginning with regard to the treatment as I learned from her that I will have to take the Xgeva shots for the rest of my life. I had been under the impression that applied to the Lupron shots only.

The news hit me pretty hard for some reason. I'm not entirely sure why it got to me like it did, probably because it came out as I was asking her how long I could expect the treatment to last before it would be complete. I did some more reading later and found that apparently there is not cure for the bone cancer, it has to be maintained. The nurse gave me some info on a men's support group that meets there at the oncology office once per month. The next meeting is on the 27th, so I may go and check it out. I've never really been one to be interested in counseling or support groups or any of that type of therapy, but I figure that it can't hurt to at least check it out. If it's not my bag, I don't have to go back.

I was still blubbering when I went down the hall to get my shot. I just couldn't stop and really didn't until after I was back in the car. I texted my wife to tell her what was happening and then called her when I got in the car. That seemed to help as I was able to get it out of my system after talking to her. Toward the end of the day, the pain seemed to lift a little, but not enough to celebrate. It also didn't help that there were fires breaking out at work that I was also trying to remotely keep under control while dealing with all of this and that kind of set the tone for the week as those fires kept popping up throughout the next 4 long and miserable days.

Tuesday the pain had taken up residence in both of my thighs and parked there for the rest of the week. Both legs this time rather than just one. The pain was mostly centered just above and to the side of the knee although at it's more severe points it flows all the way up to just under my buttocks on the back of my thighs. As with Monday, the meds didn't seem to be doing much and I had to take a Vicodin every 3-5 hours just to take the edge off of it. The pain never went completely away. As has become usual lately, my night had consisted of about 6 hours of sleep in total, spread out in multiple increments through the night, one of them being for about 4 hours.

What usually happens is that I go to bed around 10 or 11 and sleep for about an hour or so, then wake up with my legs or hips hurting to some degree. Usually by this time, I'm due for another dose of Vicodin, so I get up, take it, and then park myself in the living room, or on the toilet as the need may be, and wait an hour for the Vicodin to kick in. I then go back to bed and repeat this cycle. I usually wake up again around 2:00AM, 3:00AM or 4:00AM, take another pill, wait another hour, then go back to bed and sleep until 7:00 or 8:00 in the morning.

Late Tuesday afternoon, my mother and brother came into town to visit and arrived at the house just in time for the girls to be off to their gymnastics practice. My mother went with them while I stayed behind and finished work as did my brother. It was also around this time that my bowel cycle changed to diarrhea, so I spent much of that time on the toilet. When the girls all got back from practice, I got a chance to do some catching up until everyone turned in for the evening. I turned into he bathroom until about 1:30 or so before I was finally able to go to bed.

Because my family was coming to visit, I had taken Wednesday and Thursday off from work, or so I thought, but despite this fact, and the morning not blizzard that had all of the area panicked and staying home, I still got pulled into putting out fires at work. Wednesday started out much like Tuesday and persisted through the day with pain in my thighs that wouldn't go away completely. Thursday was again much the same except that my brother and I snuck out to lunch together. My mother had gone with my wife and the girls to their dance practice and were planning to go to lunch afterward. They had wanted us to join them, but unfortunately I had a call that I had to be on at work at a time that precluded making that happen. Things calmed down at work by 3:00PM and I called it quits for the day.

During one of my overnight uptimes on Wednesday or Thursday, I don't remember which, I came across this passage from a book called "Neurologic Complications of Cancer, Second Edition", in Google Books, which actually describes my condition pretty accurately on pages 309-315 or thereabouts:

Mom and my brother left this morning fairly early. I broke down again for no apparent reason at their leaving. I think it was perhaps because it was the first time I'd been able to see my mother in person since being diagnosed. No matter how old you get, you still want your mommy to give you comfort in tough situations. Having her 1500 miles away doesn't facilitate that happening much. I was sad to see my brother leave as well. He and I aren't as close as we once were. Not for any particular reason, just that our lives have taken different paths and we don't take many opportunities to cross them these days. It was also nice to see him for a couple of days without his family in tow just from the aspect of being able to talk to him without the distraction, mosly while my family was also out with my mother and my distractions.

Their visit was a little bittersweet in that my father was in the hospital the whole time they were up here visiting. He had gone in the night before they left with possible pancreatitis and my mother had made the decision to go ahead and take the trip since she'd been planning if for a long time and may not get another opportunity anytime soon. There really wasn't anything that she could do for dad in the hospital. He had all of the care that he needed and would probably be out for much of his stay and the trip was only for 4 days. My mother spoke to him each day while she was here and it sounded like he was getting better each day, but it cast a hint of a shadow over their visit.

Amid the morning's fire drills, I called the pain management specialist to follow up with him again as instructed. My pain levels were a little better today, though not by a lot. I was able to distract myself a few times enough to not notice the pain until the distraction subsided. I relayed all of this to him, including my belief that the pain meds I'm taking aren't doing anything. I told him that I haven't tried not taking them for comparison, but that I just can't tell that they are doing anything, if any since the Vicodin is the only pill that I'm taking where I can notice its effect which seemed to be diminished this week. He called me back later around 2:30 or 3:00, which is rather early for him, and said that he'd like for me to start taking Lyrica in place of the Neurontin. His nurse called back a little later to confirm that the prescription had been faxed over to the pharmacy. I looked up Lyrica and it appears to be primarily given to people with epilepsy. It did not specifically list pain from bone cancer in the literature, but there were several mentions of it's use for various neurological pains which is what the doc and I both think is the kind of pain I'm feeling in my legs since it does seem to follow the sciatic nerve. My wife went out and picked it up for me later in the evening and I started it with my first dose tonight. I guess the next few days will let us know of its effectiveness. I also happened to notice tonight that I'm running low on Methadone. I've got about 4 days worth which will last me through Tuesday, but given the hassles that I went through to get it last time, it's got me a little nervous about getting a refill in time. I should have mentioned something to the doctor when I spoke with him today. Oh well. If I do run out before I manage to get a refill, it will at least give me an opportunity to determine whether it's actually doing something.

I know that I should write in this blog more often as the details fade from memory pretty quickly. Even this past week is already a blur and I'm sure that I'm forgetting a lot, but this week I also just didn't feel like writing. The pain and the diarrhea provide enough apathy to stop me from even trying, but hopefully I've still managed to capture the essence of what went on this week and perhaps I can stay on it better in the coming days. I have somewhat reached the point at which I feel like there's nothing to write about as it's just more of the same, but there's still enough different that I manage to find something to write about, for now.

1 comment:

  1. You are also allowed to write about finding the girls playing cops and such :) Glad y'all had some time together. Save sometime in July or August for ME!!!!! Love you, praying.