Wednesday, March 27, 2013
The Latest
On Sunday I woke up with my right leg hurting from the top of my hip bone down through the thigh and into the shin. The pain persisted all day and none of my medications seemed to suppress it. It seemed like the old sciatic pain, but different. After a couple of weeks on the Lyrica, I thought that was all behind me, then out of the blue, this. As a result, I had difficulty sleeping that night. I had felt some mild constipation all day and had become convinced that it was somehow linked to my pain. It has happened before where the pressure on my bowels triggered some other pain that went away once the constipation was relieved. By 4:00am I was desperate for both relief and sleep, so I got in the car and drove to the 24 hour pharmacy to buy an enema, hoping that would bring both. By then a heavy snow was falling and I drove in blackout conditions all the way there and back, barely able to see the road. Interestingly my pain was a little less by the time I got home, apparently due to the ride in the car, but it quickly increased back to it's original level after a short time. After administering the enema, I almost immediately thew up.
Given that I had eaten nothing in the last 48 hours save a bowl of ramen noodles, I threw up a surprising amount. At this point I felt utterly drained, between the enema and the retching, but the pain in my leg was gone. I now wondered what caused me to throw up. Was the enema too much for my system after having had so little to eat? Was I finally succumbing to the baby's virus? Did I have something else going on that caused it? Was that it or only the beginning?
Once my system calmed down a little, the pain in my leg returned. So much for my theory about the cause. I sat on the couch for a while and somehow managed to fall asleep until 8:00am. When I awoke my stomach didn't feel right, and I wasn't sure whether i should try to eat, so I chose not to.
The unease in my stomach and pain in my leg continued throughout the day. Because of the night I'd had, I decided to take the day off at work, telling my employees that I would be out of pocket most of the day and hoping that I'd find a way to get some rest, but that was not in the cards. Emergencies popped up that required my attention throughout most of the day so I pushed through, perhaps it helped to take my mind off of other things. My pain doctor called to check on me in the afternoon. I had emailed him a report of things on Friday. After filling him in on the weekend's activities he asked me to up the Lyrica dosage. That seemed to have done the trick as the pain in my leg had mostly subsided by 8:00pm. I even managed to eat a little of that pulled pork that evening. Tuesday was much the same as Monday with the exception of some pretty severe bowel issues in the afternoon. Needless to say, I still didn't have much to eat.
Wednesday was a little better. The pain in my hip and leg persisted at one level or another throughout the day, but I did manage to eat 3 meals today, so hopefully that trend is broken. I still don't really feel hungry. It's weird to go 4 days without eating and not feel hungry much less starving. I did eat a few things here and there throughout those 4 days, but it probably all amounted to the equivalent of one good meal.
I attended a local prostate cancer support group Wednesday evening. They meet once per month and this was my first time to attend. I'm not sure if this is for me, it will take another meeting or two for me to determine. I had expected it to work a little like an AA meeting, or at least the way they show them on TV, but it didn't. At one point, they did ask me about to tell my story, but they mostly just wanted to know my diagnosis, stats, and what treatment I'm getting. There are apparently quite a few and the men there have been through several of them. I was the youngest one in the room by a long shot. The rest were all my dad's age or older and it sounded like most of them had options for surgery that they had either already had or were considering. Some had had it come back afterwards. Some had been through a couple of clinical trials. It didn't sound like anyone in the room had a diagnosis like mine where it has spread to the bones, at least there wasn't any discussion of it. Several of the men there have had it for a number of years, so that was encouraging to some degree. Primarily the room was dominated by two know-it-alls. One of them has kind of earned it because it sounds like he's been through it all and has studied it quite a bit in the process. The other guy was the anti-guy, telling everyone that the doctors don't know what they're talking about and that some alternative treatments are much more effective, etc... With the two of them having their say, there wasn't much group discussion to be had. We'll see what happens at the next one. If nothing else, it did seem to be a good source of information.
Today I'm going in for another bone scan. My pain specialist is concerned that my pain hasn't been better under his care than it has been. He has done pretty well at giving me medications that suppress my pains, however new ones seem to keep popping up every time one is taken care of and with this pain in my leg returning, he's a little concerned so he ordered the scan to compare to the previous one and determine next steps. This is the fun one where I go in the morning to get a radioactive injection, then come back in the afternoon to sit in a tube for an hour and a half. Hopefully it will reveal something useful. Perhaps the results will also be useful to the folks over at NIH on Monday.
Thursday, March 21, 2013
Walking Sideways
I've grown bored from writing about my day to day happenings. The details change, but the pattern is largely the same and I'm sure that nobody really want's to know how my bowels did today. Things have been so inconsistent of late that I've started logging the daily play by play into Evernote mostly so that I can remember them correctly when I review things with my doctors. I noticed that, even writing here, it was difficult to get all of the facts straight just a couple of days later. Everything has become a blur, hours, days, weeks, months. I haven't taken down the Christmas lights yet, I haven't even picked up the extension cords going to them. I did unplug them shortly after Christmas was over.
I reached a milestone at work this week, as of Sunday, I've been at this job for 10 years now. That's twice as long as I've ever worked anywhere else and practically unheard of in the IT/Software industry and I cross that threshold from the relative comfort of my living room unable to even drive into the office for an occasional visit. I'm told that I'll be receiving a leather jacket for my years of service. Hopefully I'll be able to actually receive it in person rather than having it mailed to me.
My baby girl is now 4 months old and so is my diagnosis. She's getting bigger and stronger, but I'm not sure about myself. After switching me to Lyrica, my sciatic pain went away and I thought this was good progress. Some of my old back pains returned, but I chalked that up to the hours I'm spending working at my desk now that I'm able to once again sit in a chair. Then my knees started hurting every time I laid down to go to sleep and I found the only way that I could comfortably sleep was sitting up. Not sitting up in my recliner, no that has the same impact as sleeping in bed, but sitting on the couch in a slouch with a blanket draped over me like some kind of tranced shaman. There were several times this week that I simply fell asleep where I sat, regardless of where I was sitting, but it was the only sleep that I could get. I once woke up, having nodded off as such, and found my self slouched forward and slumped over at about a 30° angle. I have no idea how I managed to maintain that angle. I guess the good news is that I can now actually sit on the couch which wasn't possible a mere month ago. That too has changed in the last few nights as I've regained the ability to sleep in bed, even made it a full 5.5 contiguous hours last night, so that's something I guess.
I haven't eaten anything since Friday, not enough to speak of anyway. After the baby spent the better part of Friday night with a roto virus, I felt a general ick through the day Saturday. Some of it I'm sure was due to the fractured slumping sleep of the previous days as I found myself nodding off throughout the day and just never really got hungry. Sunday my stomach felt a little ill and I couldn't decide if it was due to hunger or vestiges of the baby's virus, but I wasn't hungry and erred on the side of caution. My wife made pulled pork for dinner, yet I didn't feel like eating. What does that tell you?
I took a shower on Monday before going to bed. This is noteworthy because of the blurring of time that I mentioned above. When you are more or less house bound, you forget to shower. You tell yourself "I'll take one tomorrow", then tomorrow comes and goes. Before you know it, you can't remember what day you last took one and it's only when you start to "notice" yourself that you make the time. If my family has noticed, they haven't said anything. I think that sometimes my wife is too afraid to push me over things like that, thinking that it's not high in importance in the grand scheme of things, but it's actually good for morale. Taking a shower refreshes and invigorates, washing off not just the grime of night sweats but also washing off the haze that forms from being stuck in a rut. Sometimes I wish she'd push me a little more than she does.
There are times amidst the blur when some things come into sharp focus. This happened for my yesterday when I decided to take a look at this: http://imwalkingsideways.blogspot.com/
After seeing how cathartic writing this blog was for me, my wife decided to start her own to get those thoughts out that have been circling around in her head. She told me about it when she first put it up, but I hadn't checked it in a few days. When I checked back yesterday, I read the "Daddy's Sick" entry and my heart broke as thoughts that I had long since put aside came rushing back and I got a fresh perspective on how this all has been affecting my family. It was the wrong time to read it, just 15 minutes before the girls were all due to come back from gym practice, with not enough time to get myself under control before they returned. I did the best that I could at that effort, but it was obvious to everyone, probably even the baby who tried to cheer me up with her whole body smiles and an extended cuddle. I largely kept it together until it came time to put this girls to bed. As I turned out the light and wished them good night, they said "Daddy, I love you and I hope you feel better". I lost my composure.
If I have learned anything from this trial so far, it's just how much I love my family and how the thing that scares me the most is the thought that I may not be there for them one day, possibly sooner than we'd all like. That's always a possibility for everyone, accidents happen, but accidents are generally quick and unexpected. It is the idea that they may have to watch it happen that both terrifies and infuriates me.
I've always lived by the motto that until you have something to worry about, there's no point in worrying. I've never been too concerned with the "what-if" and have chosen to focus more on the what is, but it's much more difficult to hold to that when it comes to my family, especially the girls. How do you explain the what is of this to a 5 and a 3 year old? Until I read my wife's blog, I didn't realize just how much they've been affected so far.
The other thing that I've learned from this has been how much I am loved by my family, by my friends, and even by acquaintances. The outpouring of prayers and offers of assistance has been overwhelming. In many ways it helps and comforts me but in some ways it saddens me that much more.
I reached a milestone at work this week, as of Sunday, I've been at this job for 10 years now. That's twice as long as I've ever worked anywhere else and practically unheard of in the IT/Software industry and I cross that threshold from the relative comfort of my living room unable to even drive into the office for an occasional visit. I'm told that I'll be receiving a leather jacket for my years of service. Hopefully I'll be able to actually receive it in person rather than having it mailed to me.
My baby girl is now 4 months old and so is my diagnosis. She's getting bigger and stronger, but I'm not sure about myself. After switching me to Lyrica, my sciatic pain went away and I thought this was good progress. Some of my old back pains returned, but I chalked that up to the hours I'm spending working at my desk now that I'm able to once again sit in a chair. Then my knees started hurting every time I laid down to go to sleep and I found the only way that I could comfortably sleep was sitting up. Not sitting up in my recliner, no that has the same impact as sleeping in bed, but sitting on the couch in a slouch with a blanket draped over me like some kind of tranced shaman. There were several times this week that I simply fell asleep where I sat, regardless of where I was sitting, but it was the only sleep that I could get. I once woke up, having nodded off as such, and found my self slouched forward and slumped over at about a 30° angle. I have no idea how I managed to maintain that angle. I guess the good news is that I can now actually sit on the couch which wasn't possible a mere month ago. That too has changed in the last few nights as I've regained the ability to sleep in bed, even made it a full 5.5 contiguous hours last night, so that's something I guess.
I haven't eaten anything since Friday, not enough to speak of anyway. After the baby spent the better part of Friday night with a roto virus, I felt a general ick through the day Saturday. Some of it I'm sure was due to the fractured slumping sleep of the previous days as I found myself nodding off throughout the day and just never really got hungry. Sunday my stomach felt a little ill and I couldn't decide if it was due to hunger or vestiges of the baby's virus, but I wasn't hungry and erred on the side of caution. My wife made pulled pork for dinner, yet I didn't feel like eating. What does that tell you?
I took a shower on Monday before going to bed. This is noteworthy because of the blurring of time that I mentioned above. When you are more or less house bound, you forget to shower. You tell yourself "I'll take one tomorrow", then tomorrow comes and goes. Before you know it, you can't remember what day you last took one and it's only when you start to "notice" yourself that you make the time. If my family has noticed, they haven't said anything. I think that sometimes my wife is too afraid to push me over things like that, thinking that it's not high in importance in the grand scheme of things, but it's actually good for morale. Taking a shower refreshes and invigorates, washing off not just the grime of night sweats but also washing off the haze that forms from being stuck in a rut. Sometimes I wish she'd push me a little more than she does.
There are times amidst the blur when some things come into sharp focus. This happened for my yesterday when I decided to take a look at this: http://imwalkingsideways.blogspot.com/
After seeing how cathartic writing this blog was for me, my wife decided to start her own to get those thoughts out that have been circling around in her head. She told me about it when she first put it up, but I hadn't checked it in a few days. When I checked back yesterday, I read the "Daddy's Sick" entry and my heart broke as thoughts that I had long since put aside came rushing back and I got a fresh perspective on how this all has been affecting my family. It was the wrong time to read it, just 15 minutes before the girls were all due to come back from gym practice, with not enough time to get myself under control before they returned. I did the best that I could at that effort, but it was obvious to everyone, probably even the baby who tried to cheer me up with her whole body smiles and an extended cuddle. I largely kept it together until it came time to put this girls to bed. As I turned out the light and wished them good night, they said "Daddy, I love you and I hope you feel better". I lost my composure.
If I have learned anything from this trial so far, it's just how much I love my family and how the thing that scares me the most is the thought that I may not be there for them one day, possibly sooner than we'd all like. That's always a possibility for everyone, accidents happen, but accidents are generally quick and unexpected. It is the idea that they may have to watch it happen that both terrifies and infuriates me.
I've always lived by the motto that until you have something to worry about, there's no point in worrying. I've never been too concerned with the "what-if" and have chosen to focus more on the what is, but it's much more difficult to hold to that when it comes to my family, especially the girls. How do you explain the what is of this to a 5 and a 3 year old? Until I read my wife's blog, I didn't realize just how much they've been affected so far.
The other thing that I've learned from this has been how much I am loved by my family, by my friends, and even by acquaintances. The outpouring of prayers and offers of assistance has been overwhelming. In many ways it helps and comforts me but in some ways it saddens me that much more.
Tuesday, March 19, 2013
Something's Happening Here. What It is, Ain't Exactly Clear
Made it through the night last night for the most part. Went to bed around 10:00, fell asleep sitting up in bed and woke up at 12:45AM. Wasn't in any pain, but took a Vicodin anyway for pre-emptive purposes. Went back to bed and slept through til 6:45AM. That's probably the longest stretch of sleep I've had in a couple of months.
Woke up with no pain, but had a dry mouth, a full bladder, and mild constipation, which is what woke me up. After a singularly successful trip to the bathroom, I started feeling pain in my right hip which seemed to radiate down my thigh a little. It became more intense as I moved around. Not sure if sciatic. Didn't feel like the sciatic pain that I'm used to as it felt more down in the hip joint.
The hip pain went away about an hour after taking medication, however I also had a bowel movement during that time so I'm not sure which had the greater impact. After sitting at the desk for a couple of hours it started to return around 11:00, so I took a Vicodin as we were hitting the 4 hour mark. A short time later, I was feeling the pain in both thighs, and it started feeling like it could possibly be sciatic, especially since the Vicodin didn't seem to be helping.
The hip pain came and went throughout the afternoon and evening. It was present when I took all of my evening meds at 10:00PM. Now it's 12:21AM and the pain is still there in the right hip, as well as a little in the right knee. My meds should have kicked in by now. Guess it's going to be one of those nights since I got plenty of sleep last night and am not particularly sleepy right now which means it's going to be a wonderful day.
Have not had any more of the normal sciatic pains since starting the Lyrica.
Woke up with no pain, but had a dry mouth, a full bladder, and mild constipation, which is what woke me up. After a singularly successful trip to the bathroom, I started feeling pain in my right hip which seemed to radiate down my thigh a little. It became more intense as I moved around. Not sure if sciatic. Didn't feel like the sciatic pain that I'm used to as it felt more down in the hip joint.
The hip pain went away about an hour after taking medication, however I also had a bowel movement during that time so I'm not sure which had the greater impact. After sitting at the desk for a couple of hours it started to return around 11:00, so I took a Vicodin as we were hitting the 4 hour mark. A short time later, I was feeling the pain in both thighs, and it started feeling like it could possibly be sciatic, especially since the Vicodin didn't seem to be helping.
The hip pain came and went throughout the afternoon and evening. It was present when I took all of my evening meds at 10:00PM. Now it's 12:21AM and the pain is still there in the right hip, as well as a little in the right knee. My meds should have kicked in by now. Guess it's going to be one of those nights since I got plenty of sleep last night and am not particularly sleepy right now which means it's going to be a wonderful day.
Have not had any more of the normal sciatic pains since starting the Lyrica.
Friday, March 15, 2013
Why am I up?
The last few nights have represented a change in my sleep pattern or lack thereof. It has been more a case of sleep entropy. I seem to be up and down every hour to half hour, waking for various reasons, not all necessarily pain related, and then taking time to get back to sleep. I've found myself on several occasions waking up after dozing off where I'm sitting, including a couple of times while sitting on the toilet.
Surprisingly it hasn't seemed to bother me in the daytime much other than the random bout of sleepiness. One morning, within an hour or waking up, I dozed off in the easy chair for a couple of hours. Yesterday, after finally getting to sleep around 6AM, I ended up sleeping until 10. It proved fortunate on the first two nights as my 5 year old woke up a couple of times each night to report various pains (tummy, arm fell asleep, etc..) and on 3 of those 4 occasions, I was already awake and was able to take care of her without her waking the rest of the house. I'll take the small blessings where I can get them. The one time that I was asleep was a rather rude awakening that took me some time to get back to sleep.
Some of the pains that I wake up with seem to spite my medications and are different from the normal pains. On the other hand, the sciatic pains that were plaguing me in recent weeks have all but disappeared since switching to Lyrica. These defiant new pains seem to be more joint pain, primarily in the knees, but occasionally in the hips too.
Yesterday (Saturday) I decided to venture out with the family to attend a baby shower in Clinton, MD which is a little over an hour's drive from the house. Given how much better I've felt since switching to the Lyrica, I figured it would be a good test for whether or not I can now handle going back into the office. I took a Vicodin right before leaving the house. It was about an hour premature, but it was also a preemptive dosage. The trip out was uneventful at least with regard to the expected pain of riding in the car, none of which ever appeared. I did have some bowel related discomfort which had started before we left and wasn't really related to the car travel, but I arrived at our destination pain-free.
After being there for several hours, seeing old friends that I haven't seen in some time, we hopped back into the car for the trip home. At this point, I was about an hour out from my next Vicodin dosage, much as when we had left in the morning, but I decided to wait it out rather than take one early for the trip home. It wasn't too far down the road until various pains started setting in, many of which felt like the pains experienced the last time I drove into the office. They concentrated in 4 locations, my neck, my left lower thigh and knee, my right shin, just above the ankle, and my left forearm near the wrist. They all seemed to be linked somehow and probably radiating out from some central point in my back, though my back actually felt fine. Fortunately the pain only rose to the level of major discomfort and did not get to the more excruciating levels that I've experienced in the past, and none of my sciatic pains showed up.
Oddly enough, once we got home and got out of the car, my pains all went away in a matter of minutes. Lesson learned. It looks like I'm probably not yet ready to return to regularly commuting into the office just yet, but if I do venture in, I need to take a Vicodin before getting in the car each way. It occurred to me the other day as I went to the doctor, that those short trips into Frederick do not usually bother me and that if my office were here in town I would probably be going into work each day instead of working from home. Ahh the perils of the long commute. There are a couple of us who have been trying to convince them to open an office in Frederick for some time, but to no avail. If only we had been successful, I would perhaps be telling different stories on here.
Surprisingly it hasn't seemed to bother me in the daytime much other than the random bout of sleepiness. One morning, within an hour or waking up, I dozed off in the easy chair for a couple of hours. Yesterday, after finally getting to sleep around 6AM, I ended up sleeping until 10. It proved fortunate on the first two nights as my 5 year old woke up a couple of times each night to report various pains (tummy, arm fell asleep, etc..) and on 3 of those 4 occasions, I was already awake and was able to take care of her without her waking the rest of the house. I'll take the small blessings where I can get them. The one time that I was asleep was a rather rude awakening that took me some time to get back to sleep.
Some of the pains that I wake up with seem to spite my medications and are different from the normal pains. On the other hand, the sciatic pains that were plaguing me in recent weeks have all but disappeared since switching to Lyrica. These defiant new pains seem to be more joint pain, primarily in the knees, but occasionally in the hips too.
Yesterday (Saturday) I decided to venture out with the family to attend a baby shower in Clinton, MD which is a little over an hour's drive from the house. Given how much better I've felt since switching to the Lyrica, I figured it would be a good test for whether or not I can now handle going back into the office. I took a Vicodin right before leaving the house. It was about an hour premature, but it was also a preemptive dosage. The trip out was uneventful at least with regard to the expected pain of riding in the car, none of which ever appeared. I did have some bowel related discomfort which had started before we left and wasn't really related to the car travel, but I arrived at our destination pain-free.
After being there for several hours, seeing old friends that I haven't seen in some time, we hopped back into the car for the trip home. At this point, I was about an hour out from my next Vicodin dosage, much as when we had left in the morning, but I decided to wait it out rather than take one early for the trip home. It wasn't too far down the road until various pains started setting in, many of which felt like the pains experienced the last time I drove into the office. They concentrated in 4 locations, my neck, my left lower thigh and knee, my right shin, just above the ankle, and my left forearm near the wrist. They all seemed to be linked somehow and probably radiating out from some central point in my back, though my back actually felt fine. Fortunately the pain only rose to the level of major discomfort and did not get to the more excruciating levels that I've experienced in the past, and none of my sciatic pains showed up.
Oddly enough, once we got home and got out of the car, my pains all went away in a matter of minutes. Lesson learned. It looks like I'm probably not yet ready to return to regularly commuting into the office just yet, but if I do venture in, I need to take a Vicodin before getting in the car each way. It occurred to me the other day as I went to the doctor, that those short trips into Frederick do not usually bother me and that if my office were here in town I would probably be going into work each day instead of working from home. Ahh the perils of the long commute. There are a couple of us who have been trying to convince them to open an office in Frederick for some time, but to no avail. If only we had been successful, I would perhaps be telling different stories on here.
Thursday, March 14, 2013
A Pain in the Neck
Woke this morning with a pretty good crick in my neck, especially when I turn my head to the left though it's tight in both directions. I guess that I must have slept funny. It eventually loosened up some, but not all the way, then again I haven't had full flexibility in my neck since all of this started.
The baby woke us both up last night at 3:30 and it took a while to get back to sleep. Once I was awake, I was suddenly aware of the usual pain in the hip region, so I got up, took my pill, and sat up waiting for it to take effect. I think I got back to bed around 5:00 only to be woke up again around 7:00 this time with the usual amount of morning pain. As I sat in my recliner waiting for the meds to kick in, I dozed back off until 9:00 or so. That was the first time I've been able to doze off in that chair in a while. Anyway I got up, got to work and was fine until the meds started wearing off around noon.
Freshly medicated, I was feeling OK for my 2:30 appointment with the pain management specialist. It was fairly brief. I told him about how things had transpired since switching to Lyrica last Friday and how I've been largely pain free except after sitting at the desk for a couple of hours and that I still have to take the Vicodin although less frequently than before. He said that he thinks the Lyrica has me on the right path, but perhaps the dosage isn't quite enough since I do still get occasional pain and have to rely on the Vicodin to soothe it, so he gave me a new prescription for a slightly higher dosage of Lyrica. We'll see what change, if any, that makes.
I did manage to make it out to a local monthly meeting tonight for the first time in since December. Overall it went pretty well but I stayed out a little past my Vicodin expiration and was in a fair amount of pain by the time I got home. At that point, it was time to take all of the meds, so I did so and waited for them to do their thing. In the meantime, I did have a bowel movement which seemed to lessen the pain somewhat, but it still persisted for a while despite that relief and taking the Vicodin. I eventually managed to climb into bed, though I can't remember when.
The baby woke us both up last night at 3:30 and it took a while to get back to sleep. Once I was awake, I was suddenly aware of the usual pain in the hip region, so I got up, took my pill, and sat up waiting for it to take effect. I think I got back to bed around 5:00 only to be woke up again around 7:00 this time with the usual amount of morning pain. As I sat in my recliner waiting for the meds to kick in, I dozed back off until 9:00 or so. That was the first time I've been able to doze off in that chair in a while. Anyway I got up, got to work and was fine until the meds started wearing off around noon.
Freshly medicated, I was feeling OK for my 2:30 appointment with the pain management specialist. It was fairly brief. I told him about how things had transpired since switching to Lyrica last Friday and how I've been largely pain free except after sitting at the desk for a couple of hours and that I still have to take the Vicodin although less frequently than before. He said that he thinks the Lyrica has me on the right path, but perhaps the dosage isn't quite enough since I do still get occasional pain and have to rely on the Vicodin to soothe it, so he gave me a new prescription for a slightly higher dosage of Lyrica. We'll see what change, if any, that makes.
I did manage to make it out to a local monthly meeting tonight for the first time in since December. Overall it went pretty well but I stayed out a little past my Vicodin expiration and was in a fair amount of pain by the time I got home. At that point, it was time to take all of the meds, so I did so and waited for them to do their thing. In the meantime, I did have a bowel movement which seemed to lessen the pain somewhat, but it still persisted for a while despite that relief and taking the Vicodin. I eventually managed to climb into bed, though I can't remember when.
A Study in Hope
Last week, a friend of ours pointed our attention to a cancer pain study at NIH which is specific to pain from the waist down: http://cancerpainstudynih.com/index.html
I contacted both my pain management specialist and my oncologist about it and they were both supportive of the idea of my joining that study.
It also happens that a childhood friend of my wife's works with the people who do those studies down at NIH. They talked last week and she talked it up with her colleagues who seem to be eager to get me into the program. My wife later spoke with someone who works with the program who took all of my information and started the process of getting me signed up.
They called back yesterday to follow up and request some additional information from us. They have been in contact with my doctors getting what information that they can from them and apparently my oncologist has been most helpful in giving them whatever they need. I suspect that at some point, I'm going to get a mountain of HPPA release forms to sign. Anyway, they are hoping to get me out for a consultation sometime in the next couple of weeks. I may not get into the specific study that I mentioned above. As I understand it, they will interview and evaluate me and then determine which of the several studies that they have going on is the best fit for me. It sounds like they are pretty interested in getting me on board, probably because I'm a bit of an anomaly having this at my age, with my overall health, and having not seen any of the standard symptoms leading up to it. They seemed most interested in how I came to find out about the cancer and were asking about the chiropractic care that led me to it.
I should probably be a little more guarded about all of this, after all these studies come with no guarantee and there's always the possibility of unintended side effects, potentially severe ones even, but I can't help but be excited at the possibility. Maybe it's because I was told that there is no cure for my condition, maybe it's the hope that I can get rid of this pain permanently, maybe it's the geek in my being excited about being part of the latest and greatest "pre-release" treatment, or the hope that this can perhaps accelerate things a little, maybe it's a little of all of it. Whatever it is, I'm excited about it and hopeful of the potential. I can't wait to get the ball rolling.
I contacted both my pain management specialist and my oncologist about it and they were both supportive of the idea of my joining that study.
It also happens that a childhood friend of my wife's works with the people who do those studies down at NIH. They talked last week and she talked it up with her colleagues who seem to be eager to get me into the program. My wife later spoke with someone who works with the program who took all of my information and started the process of getting me signed up.
They called back yesterday to follow up and request some additional information from us. They have been in contact with my doctors getting what information that they can from them and apparently my oncologist has been most helpful in giving them whatever they need. I suspect that at some point, I'm going to get a mountain of HPPA release forms to sign. Anyway, they are hoping to get me out for a consultation sometime in the next couple of weeks. I may not get into the specific study that I mentioned above. As I understand it, they will interview and evaluate me and then determine which of the several studies that they have going on is the best fit for me. It sounds like they are pretty interested in getting me on board, probably because I'm a bit of an anomaly having this at my age, with my overall health, and having not seen any of the standard symptoms leading up to it. They seemed most interested in how I came to find out about the cancer and were asking about the chiropractic care that led me to it.
I should probably be a little more guarded about all of this, after all these studies come with no guarantee and there's always the possibility of unintended side effects, potentially severe ones even, but I can't help but be excited at the possibility. Maybe it's because I was told that there is no cure for my condition, maybe it's the hope that I can get rid of this pain permanently, maybe it's the geek in my being excited about being part of the latest and greatest "pre-release" treatment, or the hope that this can perhaps accelerate things a little, maybe it's a little of all of it. Whatever it is, I'm excited about it and hopeful of the potential. I can't wait to get the ball rolling.
Wednesday, March 13, 2013
3 Steps Forward, 1 Step Back
So on Friday my pain doctor switched me from Neurontin to Lryica for my neurologic pains. Most of the pain that I have of late is in my legs and is mostly along the sciatic nerve. There are so many variables in play that it's difficult to say what's causing any of my pains or what causes them to move, and it's equally difficult to say what is working to suppress those pains, but it seems like the Lyrica was the right move.
Saturday morning I woke up much the same as any other morning, though it did seem like the pain was a little less than normal. I got up, took my medication as usual, and waited for the medication to take effect. Around 11:30 or so, my wife took the girls and they left to attend a birthday party at a friend's house that is a little too far away for me to be comfortable riding in the car. Being at home alone, I decided to attempt to get a few things done. It was such a beautiful day, that I decided to finish putting together the geodesic dome jungle gym that Santa had brought the girls for Christmas. Santa had attempted to assemble it in the garage on Christmas Eve, but the cold steel got the better of him as well as the logistics of trying to transport it fully assembled out of the garage and into the yard and Santa decided to leave it for me to assemble when the weather became more cooperative to such endeavors. So I brought all of the parts out onto the deck, still as cold as they were on Christmas Eve and let them warm in the sun while I got to work assembling several pentagons and hexagons into something resembling a dome.
What seemed like 64,000 screws later, it was completed around 4:00. It was at that time that I realized that I hadn't had a Vicodin since around 9:00 that morning and hadn't really noticed any pain in the interim despite the fact that I spent much of that time either sitting on a stool or on the ground putting things together. I was starting to feel some early tinges of pain at that point. It was more just a little discomfort that I recognized as the early warning of things to come, so I went ahead and took another Vicodin at that time. The discomfort quickly faded and I decided to start on project number two which was the trampoline that mom had purchased for the girls the previous week. Her grand plan had been for my brother to assemble it for us while he and she were visiting last week, but Old Man Winter had other plans and a freak March snowstorm prevented that from happening so I got started assembling the trampoline which went much quicker and involved a lot less effort than the jungle gym had. As sunset approached, I had it assembled except for the safety net that goes around it, and decided to call it a day. At this point, I still wasn't feeling any pain.
I decided at this point that a soak in the hot tub was warranted as a fitting end to the day, so I climbed in, turned on the jets and relaxed, or at least that was the plan. Apparently the jets aggravated several of my pain points though part of the aggravation may have also been caused by the position in which I sat, either way, I began to get some pain in my neck and shoulders, my left forearm and, of course, my legs, so I cut the cycle short and got out. It took the better part of the evening for those pains to go away but they eventually did. I went to bed that evening much the same as other evenings, sleeping for about an hour or so, then waking up with an ache in my legs, taking some more medication, waiting for it to take effect, then going back to bed until about 4 or 5AM when I would wake up again.
Sunday was much the same as Saturday. I finished putting the trampoline together, even spent a little time on it with the girls, but somewhere around mid-afternoon I guess that all of the pain-free fun caught up to me as I became drowsy and had to take a nap. When I got up afterwards, things seemed to be back to "normal" with some mild pain kept in check by the Vicodin.
Monday was perhaps the best day that I've had since all of this started. I go out of bed feeling no pain. A first as long as I can remember. Throughout the day, I felt hints of pain coming on a couple of times and took a Vicodin when I did, but I stayed pain free most of the day and by its end, made it through the day having only taken 3, despite actually sitting at the desk all day rather than trying to work from a standing position or seated on the floor as has become the norm. I went to be feeling optimistic and hoping that it was the beginning of a trend. I thought that if it were, that I may be able to consider going back into the office soon, perhaps as soon as next week.
Tuesday started out like Monday. I awoke without pain and approached my day much the same. I noticed that my sleep pattern had changed somewhat as I found myself not really being very sleepy come the usual bedtime, but after the usual ritual of going to bed, then having to get up, take meds, sit for a while, etc... I was getting down for the night around 12:30 or so and sleeping through until 5AM, then going back down at 6. My wife, for better or worse, was letting me sleep in so I wasn't getting up for the day until around 9. Somehow, my nights had sprung forward by 2 hours instead of one, but overall I was getting a little more sleep than before, especially in an continuous stretch.
Tuesday was our anniversary, so my wife suggested that we celebrate by going to lunch, girls in tow, and use the gift certificate that my employees had graciously taken up a collection to give me. While there, I approached the end of the window of my Vicodin dose and started feeling that discomfort that I get from sitting in a comfy chair for too long. By the time we got home, I was about an hour and a half past due and in a fair amount of pain. It then took the better part of the afternoon for the pain to fully subside with my needing another only 3 hours later. By evening, things were once again back to "normal".
Wednesday morning I was awakened by the girls bright an early at 7:30. They didn't wake me on purpose, but they have no volume control which is an unfortunate hereditary condition so I got up. I awoke from perhaps the longest night of sleep that I've had in some time. I went to bed the night before at around 11:30, got up an hour later with mild leg pain, and sat writing on this blog post for about an hour, taking a Vicodin and returning to bed at 1:30. I did not get up again until the girls woke me. I got up without any pain and took my meds as usual, however I started feeling it in my legs around 11:00 which was an hour too early to take another Vicodin. I held out until 12:30 and was good until around 3:30. I'm not sure what is going on, but it seems that the last two days in the afternoon it has come on more strongly where I've needed the Vicodin every 3 hours through the afternoon, then by evening things are back to normal. I did have a fair amount of constipation that afternoon, so that could have been contributing to it. I went to bed around 10:00 and was sleeping well enough that I may have made it through, but the baby woke us all up around 3AM and once up, I realized that I was having lower back pain, and the bowel discomfort that goes with it, so it was back to the routine.
So the Lyrica pattern, if there is one, is still a bit elusive. Overall, I think that it has improved things. I do feel that the pain is less, especially compared to the previous week, though it seems that some of that may be masked by a shifting of schedules, with my sleep patterns off and my daily routine perhaps pushed a little too much. I have a follow up appointment with the pain specialist tomorrow, so we'll see what that brings, if anything...
Saturday morning I woke up much the same as any other morning, though it did seem like the pain was a little less than normal. I got up, took my medication as usual, and waited for the medication to take effect. Around 11:30 or so, my wife took the girls and they left to attend a birthday party at a friend's house that is a little too far away for me to be comfortable riding in the car. Being at home alone, I decided to attempt to get a few things done. It was such a beautiful day, that I decided to finish putting together the geodesic dome jungle gym that Santa had brought the girls for Christmas. Santa had attempted to assemble it in the garage on Christmas Eve, but the cold steel got the better of him as well as the logistics of trying to transport it fully assembled out of the garage and into the yard and Santa decided to leave it for me to assemble when the weather became more cooperative to such endeavors. So I brought all of the parts out onto the deck, still as cold as they were on Christmas Eve and let them warm in the sun while I got to work assembling several pentagons and hexagons into something resembling a dome.
What seemed like 64,000 screws later, it was completed around 4:00. It was at that time that I realized that I hadn't had a Vicodin since around 9:00 that morning and hadn't really noticed any pain in the interim despite the fact that I spent much of that time either sitting on a stool or on the ground putting things together. I was starting to feel some early tinges of pain at that point. It was more just a little discomfort that I recognized as the early warning of things to come, so I went ahead and took another Vicodin at that time. The discomfort quickly faded and I decided to start on project number two which was the trampoline that mom had purchased for the girls the previous week. Her grand plan had been for my brother to assemble it for us while he and she were visiting last week, but Old Man Winter had other plans and a freak March snowstorm prevented that from happening so I got started assembling the trampoline which went much quicker and involved a lot less effort than the jungle gym had. As sunset approached, I had it assembled except for the safety net that goes around it, and decided to call it a day. At this point, I still wasn't feeling any pain.
I decided at this point that a soak in the hot tub was warranted as a fitting end to the day, so I climbed in, turned on the jets and relaxed, or at least that was the plan. Apparently the jets aggravated several of my pain points though part of the aggravation may have also been caused by the position in which I sat, either way, I began to get some pain in my neck and shoulders, my left forearm and, of course, my legs, so I cut the cycle short and got out. It took the better part of the evening for those pains to go away but they eventually did. I went to bed that evening much the same as other evenings, sleeping for about an hour or so, then waking up with an ache in my legs, taking some more medication, waiting for it to take effect, then going back to bed until about 4 or 5AM when I would wake up again.
Sunday was much the same as Saturday. I finished putting the trampoline together, even spent a little time on it with the girls, but somewhere around mid-afternoon I guess that all of the pain-free fun caught up to me as I became drowsy and had to take a nap. When I got up afterwards, things seemed to be back to "normal" with some mild pain kept in check by the Vicodin.
Monday was perhaps the best day that I've had since all of this started. I go out of bed feeling no pain. A first as long as I can remember. Throughout the day, I felt hints of pain coming on a couple of times and took a Vicodin when I did, but I stayed pain free most of the day and by its end, made it through the day having only taken 3, despite actually sitting at the desk all day rather than trying to work from a standing position or seated on the floor as has become the norm. I went to be feeling optimistic and hoping that it was the beginning of a trend. I thought that if it were, that I may be able to consider going back into the office soon, perhaps as soon as next week.
Tuesday started out like Monday. I awoke without pain and approached my day much the same. I noticed that my sleep pattern had changed somewhat as I found myself not really being very sleepy come the usual bedtime, but after the usual ritual of going to bed, then having to get up, take meds, sit for a while, etc... I was getting down for the night around 12:30 or so and sleeping through until 5AM, then going back down at 6. My wife, for better or worse, was letting me sleep in so I wasn't getting up for the day until around 9. Somehow, my nights had sprung forward by 2 hours instead of one, but overall I was getting a little more sleep than before, especially in an continuous stretch.
Tuesday was our anniversary, so my wife suggested that we celebrate by going to lunch, girls in tow, and use the gift certificate that my employees had graciously taken up a collection to give me. While there, I approached the end of the window of my Vicodin dose and started feeling that discomfort that I get from sitting in a comfy chair for too long. By the time we got home, I was about an hour and a half past due and in a fair amount of pain. It then took the better part of the afternoon for the pain to fully subside with my needing another only 3 hours later. By evening, things were once again back to "normal".
Wednesday morning I was awakened by the girls bright an early at 7:30. They didn't wake me on purpose, but they have no volume control which is an unfortunate hereditary condition so I got up. I awoke from perhaps the longest night of sleep that I've had in some time. I went to bed the night before at around 11:30, got up an hour later with mild leg pain, and sat writing on this blog post for about an hour, taking a Vicodin and returning to bed at 1:30. I did not get up again until the girls woke me. I got up without any pain and took my meds as usual, however I started feeling it in my legs around 11:00 which was an hour too early to take another Vicodin. I held out until 12:30 and was good until around 3:30. I'm not sure what is going on, but it seems that the last two days in the afternoon it has come on more strongly where I've needed the Vicodin every 3 hours through the afternoon, then by evening things are back to normal. I did have a fair amount of constipation that afternoon, so that could have been contributing to it. I went to bed around 10:00 and was sleeping well enough that I may have made it through, but the baby woke us all up around 3AM and once up, I realized that I was having lower back pain, and the bowel discomfort that goes with it, so it was back to the routine.
So the Lyrica pattern, if there is one, is still a bit elusive. Overall, I think that it has improved things. I do feel that the pain is less, especially compared to the previous week, though it seems that some of that may be masked by a shifting of schedules, with my sleep patterns off and my daily routine perhaps pushed a little too much. I have a follow up appointment with the pain specialist tomorrow, so we'll see what that brings, if anything...
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: http://goo.gl/IhmP8
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.
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: http://goo.gl/IhmP8
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.
Sunday, March 3, 2013
Sunday Enigma
Today has been a bit of an enigma. I woke up at 5:45 without my usual pains. In fact I woke up with little or no pain at all, but then after my usual morning trip to the bathroom, I came out with pain in my hip on the left side, the opposite side from where the majority of my pain has been since I started treatment. Ironically, before being diagnosed, back when I was seeing a chiropractor for my pain issues, most of my pain was on the left side, then somewhere along the line it move to the right.
Anyway, after taking my morning medication, it didn't really seem to lessen much and by 8:30, and I was just feeling a little ugh all over. I needed to go back to bed so I did and slept until 11:30 at which time I awoke largely refreshed. The ugh was gone as was most of the pain though the pain on my left side seemed to have moved down into my gluteus where it feels almost like a bruise on the sciatic nerve there. Sitting on my usual spot on the hardwood floor didn't help, but neither did sitting in any of the more comfy seating.
Throughout the day it was persistently there. The doctors always ask you to rank your pain on a scale of 1-10. This was about a 3-4 throughout the day, more annoyance and discomfort than pain, but it was there and seemed to laugh at my medication. The old trick of sitting on the toilet didn't work either. In the beginning of all of this, sometimes sitting on the toilet, where the two sides of the seat pressed up against the sciatic nerve, would often provide some relief from the pain, in this case, it actually aggravated it. Since nothing else was working, I decided to try a soak in the tub this afternoon with some Epsom salts. That seemed to help, for as long as I was in the tub, the pain subsided and I didn't notice it, but as soon as I got out, it slowly came back so I don' t know if it was the heat, the salts, or perhaps the buoyancy that was helping, but sitting in the tub all day wasn't really an option.
I learned today that the problem with having a deep soaker tub is that it holds about the same amount of water as the water heater, maybe a little more, so keeping the tub warm all day wasn't really going to happen. Interestingly, while in the tub I discovered that I am developing a callous on my left ankle which is the one that is usually down on the floor when I am spending my time sitting there trying to get relief. If things continue the way that they have, I could end up having one of the toughest ankles anywhere.
The most frustrating thing about this has been that I have no explanation for it. This came out of nowhere, without any triggering event that I can determine, and has thwarted all of my usual methods of obtaining relief. It will be interesting to see what tomorrow brings. Will this persist or will things revert back to the way that they have been, or will it bring something new?
Anyway, after taking my morning medication, it didn't really seem to lessen much and by 8:30, and I was just feeling a little ugh all over. I needed to go back to bed so I did and slept until 11:30 at which time I awoke largely refreshed. The ugh was gone as was most of the pain though the pain on my left side seemed to have moved down into my gluteus where it feels almost like a bruise on the sciatic nerve there. Sitting on my usual spot on the hardwood floor didn't help, but neither did sitting in any of the more comfy seating.
Throughout the day it was persistently there. The doctors always ask you to rank your pain on a scale of 1-10. This was about a 3-4 throughout the day, more annoyance and discomfort than pain, but it was there and seemed to laugh at my medication. The old trick of sitting on the toilet didn't work either. In the beginning of all of this, sometimes sitting on the toilet, where the two sides of the seat pressed up against the sciatic nerve, would often provide some relief from the pain, in this case, it actually aggravated it. Since nothing else was working, I decided to try a soak in the tub this afternoon with some Epsom salts. That seemed to help, for as long as I was in the tub, the pain subsided and I didn't notice it, but as soon as I got out, it slowly came back so I don' t know if it was the heat, the salts, or perhaps the buoyancy that was helping, but sitting in the tub all day wasn't really an option.
I learned today that the problem with having a deep soaker tub is that it holds about the same amount of water as the water heater, maybe a little more, so keeping the tub warm all day wasn't really going to happen. Interestingly, while in the tub I discovered that I am developing a callous on my left ankle which is the one that is usually down on the floor when I am spending my time sitting there trying to get relief. If things continue the way that they have, I could end up having one of the toughest ankles anywhere.
The most frustrating thing about this has been that I have no explanation for it. This came out of nowhere, without any triggering event that I can determine, and has thwarted all of my usual methods of obtaining relief. It will be interesting to see what tomorrow brings. Will this persist or will things revert back to the way that they have been, or will it bring something new?
Head and Shoulders, Knees and Toes
I had a follow up visit with the radiation oncologist on Friday. There's nothing that really came of it as it was more for him just to see how I was doing, to make sure that there had been improvement since the treatment and to make sure that I wasn't having any negative side effects. I told him about my current situation with the sciatic-bowel roller coaster and he didn't seem concerned. He wants to do a follow up MRI in a couple of months, so I scheduled that for the beginning of May. I guess we'll have to wait until then to find out how things look.
The last two days have definitely been at the bottom of the roller coaster. I don't know if it's due to the medication, the tuning of my laxative dosage, or something else, but starting mid-afternoon on Friday, I started feeling really unwell. I finally had a bowel movement a little prior to this and felt like it was somehow related, but I just needed to lay down, so I decided to take a nap. The nap only lasted about 45 minutes or so before I woke up with some of the usual pain and the need to head to the bathroom at which point I had diarrhea that lasted well into the night. I was on and off the toilet until about 2:30AM when I was finally able to get to bed. I was up again at 6:45 and it continued up until around noon or so.
All this time, I was having a pretty good amount of pain in my right leg above the knee, mid-shin, and occasionally in my hip and lower back. At times it was impossible to find a comfortable position to be in, even my usual stretching routine didn't help. The most comfortable thing that I could do was to lay flat on my back on the hardwood floor. I somehow managed to fall asleep in this position for an hour or so after which I awoke feeling much better. After a dose of Vicodin, I finally felt good enough to go out on a pre-planned lunch date with my wife. A friend had come over to watch all 3 girls for us for this specific reason and I had been worried that I was going to have to cancel, but in the end, whatever it was passed and we managed to both make our date and enjoy it. It was the first time in a long time that we were able to have a completely kid free conversation without being tired to the point of wanting to turn in.
After this, I had some random pains and light constipation the rest of the day, but not much that was noteworthy. The one thing that is noteworthy is that I noticed having pain a couple of times in the arch of my right foot absent of the usual pain in my leg. I've been joking for some time that my pain is working it's way down from my back, to my hips, to my leg and that it's eventually going to go out through my foot. At this point, I'm kind of hoping that the joke comes true, but I don't enjoy having the pain in my foot.
Last night, I decided to use a different pillow than the one that I've been using. Back before I was diagnosed, when I was going to the chiropractor for all of my pains, I had purchased a tempurpedic pillow in an attempt to alleviate the stiff neck that I was having at the time. It seemed to help, so I've been using it since. Now I am still having some minor stiffness in my neck and am starting to wonder if the pillow is to blame so last night, I reverted back to the crappy standard pillow as an experiment. Interestingly, I woke up this morning with my neck feeling a little stiffer, especially when I turn my head to the left, however I did not have my usual back/hip/leg pain. I had a little mild pain in my leg, nothing worth writing about, but I did have some pain in my lower back on the left side, which is the opposite of where I normally have it. I can't even remember the last time I felt it on the left. It wasn't severe and I was able to somewhat work it out by stretching, but it was just odd that suddenly I wake up without my normal pain, but with some new minor pains. I've given up trying to figure out a pattern or cause and effect relationship. At this point, I'm just going to take my meds and wait it out. It's too early to determine if this is some new shift in everything, but I may try the crappy pillow again tonight to see if I get the same results tomorrow.
The last two days have definitely been at the bottom of the roller coaster. I don't know if it's due to the medication, the tuning of my laxative dosage, or something else, but starting mid-afternoon on Friday, I started feeling really unwell. I finally had a bowel movement a little prior to this and felt like it was somehow related, but I just needed to lay down, so I decided to take a nap. The nap only lasted about 45 minutes or so before I woke up with some of the usual pain and the need to head to the bathroom at which point I had diarrhea that lasted well into the night. I was on and off the toilet until about 2:30AM when I was finally able to get to bed. I was up again at 6:45 and it continued up until around noon or so.
All this time, I was having a pretty good amount of pain in my right leg above the knee, mid-shin, and occasionally in my hip and lower back. At times it was impossible to find a comfortable position to be in, even my usual stretching routine didn't help. The most comfortable thing that I could do was to lay flat on my back on the hardwood floor. I somehow managed to fall asleep in this position for an hour or so after which I awoke feeling much better. After a dose of Vicodin, I finally felt good enough to go out on a pre-planned lunch date with my wife. A friend had come over to watch all 3 girls for us for this specific reason and I had been worried that I was going to have to cancel, but in the end, whatever it was passed and we managed to both make our date and enjoy it. It was the first time in a long time that we were able to have a completely kid free conversation without being tired to the point of wanting to turn in.
After this, I had some random pains and light constipation the rest of the day, but not much that was noteworthy. The one thing that is noteworthy is that I noticed having pain a couple of times in the arch of my right foot absent of the usual pain in my leg. I've been joking for some time that my pain is working it's way down from my back, to my hips, to my leg and that it's eventually going to go out through my foot. At this point, I'm kind of hoping that the joke comes true, but I don't enjoy having the pain in my foot.
Last night, I decided to use a different pillow than the one that I've been using. Back before I was diagnosed, when I was going to the chiropractor for all of my pains, I had purchased a tempurpedic pillow in an attempt to alleviate the stiff neck that I was having at the time. It seemed to help, so I've been using it since. Now I am still having some minor stiffness in my neck and am starting to wonder if the pillow is to blame so last night, I reverted back to the crappy standard pillow as an experiment. Interestingly, I woke up this morning with my neck feeling a little stiffer, especially when I turn my head to the left, however I did not have my usual back/hip/leg pain. I had a little mild pain in my leg, nothing worth writing about, but I did have some pain in my lower back on the left side, which is the opposite of where I normally have it. I can't even remember the last time I felt it on the left. It wasn't severe and I was able to somewhat work it out by stretching, but it was just odd that suddenly I wake up without my normal pain, but with some new minor pains. I've given up trying to figure out a pattern or cause and effect relationship. At this point, I'm just going to take my meds and wait it out. It's too early to determine if this is some new shift in everything, but I may try the crappy pillow again tonight to see if I get the same results tomorrow.
Subscribe to:
Posts (Atom)