Today was a pretty good day. I only took a couple of Vicodin all day so I guess the double patches are working. It started off a little slow. The baby was restless very early and took a while to get back to sleep. As I got firmly back to sleep, the other two woke up about a half an hour earlier than normal and I scrambled to get them settled and close the door before they woke the baby. (Neither of them has a volume control, they even whisper at 11, but if you've ever met my family, you'll know it's hereditary.) I wasn't feeling to great through all of this, and as the morning wore on, that didn't change. The family went off to church while I stayed home and went back to bed, but by the time they returned, I was feeling much better. Apparently I just needed that extra couple of hours of sleep. The rest of the day went well and I felt relatively good too. I even managed to get a few chores done around the house.
My sister apparently put this blog out on the bat signal which probably had Commissioner Gordon a little confused, but nonetheless, the response has been overwhelming. I really appreciate all of the well wishes and encouragement I've been receiving, even from those I haven't been close to in a long time. I may make an attempt to go into the office tomorrow, we'll see what the morning brings.
I've also got to thank my sister for resetting my perspective on some family matters. It's easy to be bitter about things outside of your own sphere of influence or control, but it's nice to have those things put into a greater perspective. As the famous unattributable quote goes "Holding onto anger is like drinking poison and expecting the other person to die.”
Monday, January 7, 2013
Saturday, January 5, 2013
Fire Therapy
When I inevitably get up at some point in the night, one of the things that I do is to stoke or rebuild the fire in our fireplace. We have a wood stove insert in the fireplace with a blower and use it to supplement the heat in our home. There's something very therapeutic about performing this nightly task. The house is dark and the living room is lit by the orange glow of the fire. The warm radiation from it feels good against the night chill. The house is quiet and I have it all to myself, an opportunity to gather my thoughts for better or for worse. (This is when most of these blog posts are written.)
Usually when I get up, I have some measure of pain in my legs, hips, and lower back, mostly from having just lie in one position for several hours. These pains tend to defy the medication and feel more like a pinched nerve kind of thing. It tends to be along the sciatic nerve and I've developed some sensitivity on the bony part of my buttocks when I sit down on a hard surface. However I've found the best way to get relief from this pain is to sit there on the hardwood floor in front of the fire and stretch it all out. I'll start by sitting cross-legged against the hearth while I work the fire back to life, then I'll move back a little and do runner's stretches on the floor while feeling the heat on my side.
There's something in the act itself that gives me a measure of hope to keep the fire going. There are always at least a few coals left and I refuse to use matches or fire starters to get it going again. I prefer to put the new wood on the coals and use the bellows to breath life back into the fire, to watch it build from nothing into a roaring inferno. It's my own personal Eternal Flame. Sometimes the wood isn't very cooperative and so patience is required to bring it around, much like some of the pains I'm enduring.
Usually by the time I've finished stretching and the pain has subsided, the fire by that time has re-established itself. I then turn down the flue so that the log will burn slow enough to warm the house until I wake up next, and then go back to bed. I do repeat this operation throughout the day as needed, but there's something about this midnight tending of the fire that is special to me and hopefully by the time the season has changed such that it's no longer necessary, this session will no longer be necessary for me either.
Usually when I get up, I have some measure of pain in my legs, hips, and lower back, mostly from having just lie in one position for several hours. These pains tend to defy the medication and feel more like a pinched nerve kind of thing. It tends to be along the sciatic nerve and I've developed some sensitivity on the bony part of my buttocks when I sit down on a hard surface. However I've found the best way to get relief from this pain is to sit there on the hardwood floor in front of the fire and stretch it all out. I'll start by sitting cross-legged against the hearth while I work the fire back to life, then I'll move back a little and do runner's stretches on the floor while feeling the heat on my side.
There's something in the act itself that gives me a measure of hope to keep the fire going. There are always at least a few coals left and I refuse to use matches or fire starters to get it going again. I prefer to put the new wood on the coals and use the bellows to breath life back into the fire, to watch it build from nothing into a roaring inferno. It's my own personal Eternal Flame. Sometimes the wood isn't very cooperative and so patience is required to bring it around, much like some of the pains I'm enduring.
Usually by the time I've finished stretching and the pain has subsided, the fire by that time has re-established itself. I then turn down the flue so that the log will burn slow enough to warm the house until I wake up next, and then go back to bed. I do repeat this operation throughout the day as needed, but there's something about this midnight tending of the fire that is special to me and hopefully by the time the season has changed such that it's no longer necessary, this session will no longer be necessary for me either.
Cat's Out of the Bag
I let the world know about my cancer on Facebook. I waited until late last night, just before I went to bed. This morning, I woke to a surprising number of well wishers who had already commented on it. In some ways, it feels good to get it out there, to no longer be careful about what I say without raising more questions. I guess time will tell whether it was the right decision or not.
Overall, yesterday was not bad. I had some amount of pain most of the day, but that was partly because I'm trying to figure out just how few Vicodin I can get away with and partly because I think most of the pain I was having yesterday was more neurological. It feels like a pinched nerve kind of thing.
I actually managed to sleep through the night, all the way to 5:30, and so did the baby. Now I'm up and there's no point in going back to sleep, but I woke up feeling pretty good pain wise. My stomach is having it's morning ick, but that's the biggest thing that I'm dealing with so far.
Overall, yesterday was not bad. I had some amount of pain most of the day, but that was partly because I'm trying to figure out just how few Vicodin I can get away with and partly because I think most of the pain I was having yesterday was more neurological. It feels like a pinched nerve kind of thing.
I actually managed to sleep through the night, all the way to 5:30, and so did the baby. Now I'm up and there's no point in going back to sleep, but I woke up feeling pretty good pain wise. My stomach is having it's morning ick, but that's the biggest thing that I'm dealing with so far.
Thursday, January 3, 2013
Kryptonite
Another aspect of the "superman" theme of this blog is that I've always been very self-sufficient. My mother tells me that as a toddler my favorite phrase was "I'll do it myself". That has very much been a theme that has run through my entire life. I've always preferred DIY to having something done for me. This even led me to my career in IT as I am largely self taught on many technological fronts and do somewhat fit the old phrase "jack of all trades, master of none".
I've always had a pretty small circle of close friends and have been OK with that. I never got homesick when I went off to college and never had any problem with living alone. I guess what I'm saying is that I've never really felt like I've needed to rely on anyone for anything. I've always been the kind of guy who steps into a situation and takes charge, figures out what needs to be done and does it.
This is where I'm really starting to feel the impact of this disease the most. Suddenly I'm no longer as self-sufficient as I was. Tasks that I previously wouldn't have given a second thought are now difficult and I'm at the point of having to ask for assistance. It makes me feel useless which, for me, is the worst feeling in the world, to be unable to do something for myself. Letting go and accepting help is difficult for me, but I am recognizing that I have little choice in the matter. As I look out across my lawn at what's left of the Christmas Eve snow, I can't help but wondering whether I'll even be up to the task for clearing the driveway should we get any significant snowfall this winter. Will I be up to the task or will I have to ask someone else to do it for me?
My wife has been wonderful to me. She truly is the greatest thing to ever happen to me. I know this has all been hard on her, especially with it coming on top of her giving birth and all that entails. I know that she's being pushed to her limits in trying to keep things as normal as possible for the girls while still being there for me. She's much stronger than she gives herself credit for and I suspect that in the coming months I'll have to lean on her more. I pray that she will have the strength to do what is necessary and that I won't be too much of a burden on her. I feel so useless here in our house, unable to help with the baby as much as I did with our first two. Even in something as simple as playing with the girls I have become more limited in what I can do.
I think I'm starting to understand how Superman felt in the presence of kryptonite.
I've always had a pretty small circle of close friends and have been OK with that. I never got homesick when I went off to college and never had any problem with living alone. I guess what I'm saying is that I've never really felt like I've needed to rely on anyone for anything. I've always been the kind of guy who steps into a situation and takes charge, figures out what needs to be done and does it.
This is where I'm really starting to feel the impact of this disease the most. Suddenly I'm no longer as self-sufficient as I was. Tasks that I previously wouldn't have given a second thought are now difficult and I'm at the point of having to ask for assistance. It makes me feel useless which, for me, is the worst feeling in the world, to be unable to do something for myself. Letting go and accepting help is difficult for me, but I am recognizing that I have little choice in the matter. As I look out across my lawn at what's left of the Christmas Eve snow, I can't help but wondering whether I'll even be up to the task for clearing the driveway should we get any significant snowfall this winter. Will I be up to the task or will I have to ask someone else to do it for me?
My wife has been wonderful to me. She truly is the greatest thing to ever happen to me. I know this has all been hard on her, especially with it coming on top of her giving birth and all that entails. I know that she's being pushed to her limits in trying to keep things as normal as possible for the girls while still being there for me. She's much stronger than she gives herself credit for and I suspect that in the coming months I'll have to lean on her more. I pray that she will have the strength to do what is necessary and that I won't be too much of a burden on her. I feel so useless here in our house, unable to help with the baby as much as I did with our first two. Even in something as simple as playing with the girls I have become more limited in what I can do.
I think I'm starting to understand how Superman felt in the presence of kryptonite.
Welcome to 2013
After a pretty good day on Monday, the first 3 days of 2013 have been miserable. New Year's Day can only be described with the word "crappy" as that is how I felt all day. I wasn't having a lot of pain, but just felt an overall crappy feeling all day. Toward the end of the day, the Miralax finally did it's job, so that pretty well explains things. Strangely, after that, the pain did set in and I had to double up on the Vicodin.
Other than some lingering pain that wouldn't go away, I felt relatively well on Wednesday as I got up and went to an early morning appointment with the Oncologist. I updated him on my condition and was advised to increase the dosage of the bowel moving products until achieving the desired results. I also discussed the fact that I was taking a double dose of Vicodin in addition to my Fentanyl patch and still had some lingering pain. He started to prescribe a larger dose patch, but since my pain wasn't great, decided to wait and see if getting my Xgeva shot would help things calm down a little.
The rest of the day was less pleasant. I kept taking the double dose of Vicodin and it didn't quite seem to do the job. I also had no apetite and though my wife prepared some delicious dishes for both lunch and dinner, I had to force myself to eat them. The day was mostly ruled by pain and as I logged in to work from home, I started wondering if I should consider taking a disability leave. That's something I really don't want to do, but if I can't put in the effort at work that I need to, it may become necessary. Somehow I managed to sleep through the night, in bed, waking only once when the baby got up for her nightly feeding. I managed to go back to sleep, in bed, and sleep through til morning when the girls woke everyone up at their usual 7:00AM.
I was sleeping really hard at the time and didn't really wake up well, so I went back to sleep and somehow managed to sleep until 10:00 when my wife came in to say goodbye as she took the girls off to their dance practice. I wasn't feeling too bad, apart from a dry mouth, so I decided to get on up and the pain hit me as soon as I stood up. This time is wasn't the leg and back pain from the previous day, but was now in my hip and lower back. I took a Vicodin to see if it would be enough, and an hour later took a second as it was not. That cycle pretty much continued through the day so I called the doctor to relay my situation. They called back and suggested that I double upon the patches and then referred me to a radiology oncologist since my pains sound like they may be nerve related. It was late in the afternoon, so I'll call them tomorrow. Hopefully this double patch will do the trick.
Other than some lingering pain that wouldn't go away, I felt relatively well on Wednesday as I got up and went to an early morning appointment with the Oncologist. I updated him on my condition and was advised to increase the dosage of the bowel moving products until achieving the desired results. I also discussed the fact that I was taking a double dose of Vicodin in addition to my Fentanyl patch and still had some lingering pain. He started to prescribe a larger dose patch, but since my pain wasn't great, decided to wait and see if getting my Xgeva shot would help things calm down a little.
The rest of the day was less pleasant. I kept taking the double dose of Vicodin and it didn't quite seem to do the job. I also had no apetite and though my wife prepared some delicious dishes for both lunch and dinner, I had to force myself to eat them. The day was mostly ruled by pain and as I logged in to work from home, I started wondering if I should consider taking a disability leave. That's something I really don't want to do, but if I can't put in the effort at work that I need to, it may become necessary. Somehow I managed to sleep through the night, in bed, waking only once when the baby got up for her nightly feeding. I managed to go back to sleep, in bed, and sleep through til morning when the girls woke everyone up at their usual 7:00AM.
I was sleeping really hard at the time and didn't really wake up well, so I went back to sleep and somehow managed to sleep until 10:00 when my wife came in to say goodbye as she took the girls off to their dance practice. I wasn't feeling too bad, apart from a dry mouth, so I decided to get on up and the pain hit me as soon as I stood up. This time is wasn't the leg and back pain from the previous day, but was now in my hip and lower back. I took a Vicodin to see if it would be enough, and an hour later took a second as it was not. That cycle pretty much continued through the day so I called the doctor to relay my situation. They called back and suggested that I double upon the patches and then referred me to a radiology oncologist since my pains sound like they may be nerve related. It was late in the afternoon, so I'll call them tomorrow. Hopefully this double patch will do the trick.
Tuesday, January 1, 2013
Can't Hide
So after this morning's breakdown I got myself together and rejoined the family, but I guess that I wasn't quite done and started crying in front of the girls which elicited great concern from them. I told them that Daddy was crying because he didn't feel well. Now they keep coming up to offer me hugs and to say that they hope I feel better tomorrow. That is perhaps the most difficult part of dealing with aol of this. Trying to shelter my girls from it all.
New Year's Day
It's 12:30PM New Year's Day and I've just lost it.
I went to work yesterday and had a pretty good day, then on the way home the old ache in my left forearm came back. I don't know whether it's related to the cancer or not, it just randomly shows up, bothers me for a few days and then goes away for a while. Whatever it is, it seems to ignore the pain medication. So it was a bit of a rough evening. I told a friend about my condition yesterday and he wanted to come by for a visit after the girls went to bed. I held it together pretty well and had a good visit. By the time I went to bed, the arm pain was mostly gone, but I had difficulty getting to sleep as every time I would lay down, about an hour in one of my legs or my hips would start hurting and I'd have to get up, sit up and stretch them for a while til the pain went away. That process repeated 2 or 3 times until I finally went to sleep for the night around 2:00.
My wife let me sleep in this morning so I didn't get up til around 9:30. I felt like I had gotten a good night's sleep, but also felt like I'd been run over by a truck, especially between my shoulders, but my morning routine quickly melted most of that feeling away.
My oldest wanted to go outside and play in the snow. She is such a miracle in that she is perfectly willing to go out and play alone if nobody else wants to go out with her. She happily went out and started doing the things that 5 year olds do in the snow. I felt bad seeing her out there all alone, so I suited up and went out there with her even though I didn't really have the energy for it. She was so proud of the snow angels that she made and the perfect snowballs that her snowball maker produced, then she asked me to push her in the swing. Once she got going, I sat down on the bench next to the swing just to watch her. She was so full of energy and life that when i saw the smile of joy on her face I nearly lost it. I keep wondering how many more of these opportunities I will have. My prognosis isn't bad at thiis point, but I've felt like such crap lately that it's hard to keep perspective. When I was single, I wasn't that interested in having kids and felt like I wasn't reallly equipped to interact with them. I never thought that I would love anyone as much as I do those girls. I often don't realize it in my day to day, but in moments like this, when I catch a glimpse of pure joy on their faces, that's when I know it.
While we were out, I brought up more firewood to the deck as our pile was getting low. Lately when I've done this, it's seemed to help my back as the activity seems to loosen things up, but this time it aggravated the pain in my arm from last night which had gone away and when I came in the house, I just really felt like crap all over. I'm not sure what's going on with me today, but I just feel terrible and that led me to this current breakdown. I couldn't hold back any longer, so I locked my self in the bedroom to get it out of my system. Hopefully my Oncologist appointment tomorrow will bring some answers or at least some positive changes.
I went to work yesterday and had a pretty good day, then on the way home the old ache in my left forearm came back. I don't know whether it's related to the cancer or not, it just randomly shows up, bothers me for a few days and then goes away for a while. Whatever it is, it seems to ignore the pain medication. So it was a bit of a rough evening. I told a friend about my condition yesterday and he wanted to come by for a visit after the girls went to bed. I held it together pretty well and had a good visit. By the time I went to bed, the arm pain was mostly gone, but I had difficulty getting to sleep as every time I would lay down, about an hour in one of my legs or my hips would start hurting and I'd have to get up, sit up and stretch them for a while til the pain went away. That process repeated 2 or 3 times until I finally went to sleep for the night around 2:00.
My wife let me sleep in this morning so I didn't get up til around 9:30. I felt like I had gotten a good night's sleep, but also felt like I'd been run over by a truck, especially between my shoulders, but my morning routine quickly melted most of that feeling away.
My oldest wanted to go outside and play in the snow. She is such a miracle in that she is perfectly willing to go out and play alone if nobody else wants to go out with her. She happily went out and started doing the things that 5 year olds do in the snow. I felt bad seeing her out there all alone, so I suited up and went out there with her even though I didn't really have the energy for it. She was so proud of the snow angels that she made and the perfect snowballs that her snowball maker produced, then she asked me to push her in the swing. Once she got going, I sat down on the bench next to the swing just to watch her. She was so full of energy and life that when i saw the smile of joy on her face I nearly lost it. I keep wondering how many more of these opportunities I will have. My prognosis isn't bad at thiis point, but I've felt like such crap lately that it's hard to keep perspective. When I was single, I wasn't that interested in having kids and felt like I wasn't reallly equipped to interact with them. I never thought that I would love anyone as much as I do those girls. I often don't realize it in my day to day, but in moments like this, when I catch a glimpse of pure joy on their faces, that's when I know it.
While we were out, I brought up more firewood to the deck as our pile was getting low. Lately when I've done this, it's seemed to help my back as the activity seems to loosen things up, but this time it aggravated the pain in my arm from last night which had gone away and when I came in the house, I just really felt like crap all over. I'm not sure what's going on with me today, but I just feel terrible and that led me to this current breakdown. I couldn't hold back any longer, so I locked my self in the bedroom to get it out of my system. Hopefully my Oncologist appointment tomorrow will bring some answers or at least some positive changes.
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