Wednesday, January 30, 2013

Qualified Success

Woke up this morning with the same hip pain as the morning before. Took my meds and went through the whole bend/stretch/cringe routine until it went away an hour or so later. One pain that lingered most of the day, however, was a pain on the bone under my left buttock which felt like a bruise. It was a little odd as it persisted until late afternoon, then just disappeared. Otherwise, today was a good day much like yesterday afternoon. I felt better overall today than I have in I can't remember when. To add to this, I only had to take 2 Vicodin all day, with a third taken at 9:30PM, vs my usual every 3-5 hours. It's a small improvement.

At my radiation treatment, today was "Doctor Day" which means that Wednesdays are the day that the doctor meets with the radiation patients to discuss progress and concerns. I told him about all of the variables that had been in play since our previous discussion, that I had seen the pain specialist, changed my medication, changed the dosage of that medication, and that the nature of my pain had changed from pain in the back, in the region that he was treating with radiation, to pain in my hips and legs seemingly only occurring after a period of rest in bed. He said that it was possible that the back pain is better due to the radiation, as now would be the soonest that I would have potentially felt any improvement from the treatment, but he also said that it is not unusual for one pain to mask another and that now that he has treated the back pain, it is now revealing this other pain in its place. He asked me to keep tabs on the amount of pain I'm having in my legs and to let him know if it gets any worse. In the meantime, he is going to look at my previous scans to see if there is any cause for concern of weakness in my femur as there was a fair amount of lesions that showed up there, especially on the left one. We'll see what happens from here, I guess. Given that this new pain seems to be primarily a first thing in the morning thing, hopefully it will start improving over time as well. He asked that I schedule a follow up visit with him in a month to see how things are going after the carry over from the radiation has had time to take effect.

I decided to stay with my plan to drive in to Baltimore for the company dinner. Amazingly, I made it all the way there without incident and without pain. We went to dinner on one of those harbor cruise boats and I felt fine the whole time, however by the time we made it back to the hotel at 9:30, I was starting to feel some of the standard pains coming on and decided to take my 3rd Vicodin since I would be having to drive back home soon. I lingered in the bar for about an hour before heading out. By this time, most of the pain was gone. It was good to be out of the house tonight and to see many of the people in our organization from around the world that I generally only see during this one week each year. I was happy that I made the decision to go through with it.

On the way home, the hip pain started, the same hip pain that I usually only get after spending time in bed. It became pretty bad, so about halfway home I took my evening dose of Neurontin and Methadone. By the time I reached home, that pain had mostly dissipated. This is good in that it tells me those drugs are doing something since I took them about an hour and a half past their scheduled time and they actually helped with the pain. This was my first semi-controlled experiment to verify their usefulness, so overall I will call the trip a success. I was able to drive down without the time in the car generating any new pain and even though I encountered pain on the return trip, I was late in taking my medication so it's possible that I could have made the return trip pain free had I left a couple of hours earlier. The only way to tell will be to give it another go during normal work hours. If I continue to feel the way that I did today for the next several days, then I may try going to the office next week.

Tuesday, January 29, 2013

Good Night, Westley

Overall, today was a good day. I felt perhaps as good as I've felt in a long time though I can't remember how long it's been. It didn't start off so good. I woke up at 3:00AM with pain in my hips and legs, took a Vicodin, and then fought with the fire for 2 hours. Finally got back to bed at 5:00 and slept until the kids, and hip pain, woke me up at 7:00. When I got up, the pain in my hips was pretty harsh, so I took my meds, all of the morning doses plus a Vicodin, and spent an hour trying to find a position that hurt less than the rest. By 8:00 I felt a little better, and very sleepy, so I went back to bed until my wife woke me at 10:00 to get ready for my radiation treatment. This time, I awoke mostly pain free and managed to keep it that way for the rest of the day.

I spoke to the pain doctor yesterday and told him how my weekend went. As I had predicted and hoped, he told me to increase the dosage of the pain meds and decrease the laxative. So far, so good with these new dosages. It's not quite there as I'm still having to take Vicodin with it, but I took less today and he said that the methadone has a long half life which means that it takes a bit to build up in my system before becoming fully effective and will take a bit to get out of my system when the time comes. If we've reached the right level, then tomorrow should prove it. I'm supposed to follow up with him again on Thursday.

Pain issues aside, I overall felt well today. I was more alert and motivated with no bowel or appetite issues to speak of. I'm hoping that this carries over into tomorrow because my goal is to drive down to Baltimore to attend at least one day of the company's sales meeting and Wednesday night's team dinner. If I'm up for it, it will be a good test of my resilience in driving more than 5 miles and proof that the new regimen of pain medicine is working or at least getting there.

Today was Picture Day in my radiation treatment. A little tongue in cheek title assigned to the day that they take a new X-ray before administering the treatment which they do once per week, I'm assuming the purpose is to verify that the calibration is still correct. Oddly today I didn't feel anything during the radiation part. I had joked on Monday that I was developing a Pavlovian twitch whenever I hear the buzzer that sounds while the radiation is being administered. Up until today, I could always swear that I felt a slight air movement and somethig almost like a light jolt whenever the buzzerr sounded, but today I felt nothing. Not sure what that means, if anything. 11 down, 3 more to go. The radiation oncologist told me in the beginning that the soonest I would feel any benefit from the treatment would be this week. Perhaps that explains that lack of feeling at the buzzer today? Perhaps it explains why I felt better overall? It may also explain why the pain that I have had the last couple of days has been less the usual back pain and more the neurotic hip and leg pain? One thing at a time I guess. Let's see what the morrow brings.

I've really stopped trying to predict what the next day or days will bring and am viewing my health a little like the Dread Pirate Roberts when he tells Westley "Good night, Westley. Good work. Sleep well. I'll most likely kill you in the morning." This morning was a little brutal, tomorrow morning may be better, and neither will be an indicator of the next.

Saturday, January 26, 2013

The jury is still out

It's now been one full day on the new pain medication regimen and I'm not sure what to make of it at this point. I didn't realize how much the patch was actually doing to smooth things out. I had the impression that it wasn't doing much, but today I could tell whenever a pill wore off. I've had to continue taking Vicodin faithfully just about every 4 hours and my bowels seem to have the opposite problem from before. The doctor did say that it would take a couple of days for the Methadone to build up in my system, so here's hoping that's the case and tomorrow is a little better, otherwise, the doctor may need to tweak things a little on Monday. Today wasn't great, but it wasn't really any worse than before, just different. The level of pain is close to the same but the pain itself seems a little more pronounced.

Two of my employees came out to Frederick yesterday and took me to lunch. They brought with them a card signed by my whole team and apparently they took up a collection to buy a couple of gift cards to a few area restaurants. That was a big surprise and some much needed validation. As a manager, I don't get many opportunities to find out what my employees think of me. Sure I give them feedback on their performance all the time, but I rarely get any window into their view of mind. Their thoughtful gift tells me that I must be doing alright and makes me all the more eager to get this pain under control so that I can get back to the office. It was just what I needed.

Thursday, January 24, 2013

What Tiggers do best.

My sister chided me today for not posting anything since Monday and there's a reason for that, I just didn't feel like it. In fact, I didn't feel like much of anything Tuesday and much of Wednesday. I just felt like crap to the point where I couldn't get the motivation to do anything. I didn't feel like posting to Facebook, or even reading it for that matter. I didn't feel like checking my email or watching TV, much less doing any work. All I really felt like doing was sleeping whenever the pain didn't prevent it. I hit a new low point and I broke down. My wife broke down too as she confessed as to how much this has all been weighing her down. She didn't want to admit it because she didn't want to "put that on me" with all else that I'm dealing with, but I look at it more as something that I've put on her. I told her that I feel like she's effectively become a single mother in recent weeks as I've either been incapable or unmotivated to help her out as much as I should. I've spent a lot of time in bed over the last week or so, getting sick of being sick. We both cried over it all and got it out of our systems. Sometimes that's what is needed to turn things around, to hit bottom, or at least seemingly so, because then all you can do is look up.

I woke up Wednesday morning still feeling awful, with a touch of nausea, but I also realized that I was dehydrated. I woke up with my mouth feeling dry and as I drank a glass of water, my nausea turned to stomach cramps. I thought this was strange as I had had quite a bit to drink the night before. I still didn't feel like eating anything, but I managed to down a couple of glasses of water before going to my radiation treatment. After I came home from the treatment I was ready to call my boss and tell him that I was going to need to take some time off because I couldn't do this any more. I felt like I was ready to throw in the towel. My wife convinced me to wait until after I'd had a chance to meet with the pain management specialist to see what he had to say. So as she took the girls off to a pre-arranged play date, I lay on the couch trying to find the motivation to get up.

I'm not entirely sure what happened, but during the time they were out, I somehow got a second wind. I managed to get myself up off the couch and login to work to see what needed to be done. I wasn't expecting to do anything but read through my email and then go to bed, but somehow I was able to get things done. I had a handful of things that had a deadline for that day and I couldn't let them go unfinished. I guess that I had finally drank enough to hydrate myself because my appetite also came back and I ate perhaps a little more than I should. At my wife's insistence I had been making an effort to drink more than I felt I needed to and I guess that did the trick. By the end of the day, I had completed most of the work that I needed to get done and felt much better. I was even able to interact with the girls for a while before they went to bed.

This morning I woke up feeling fine, or as fine as I can these days. I had my usual morning pains, which went away once the morning Vicodin kicked in, but I didn't have any of the sour feelings in my gut. My stomach felt fine and I was able to eat breakfast, and though I woke up with a little dry mouth, I didn't feel dehydrated. The feeling stayed with me all day and it was as normal of a day as I've felt in a while. I don't know what happened. Perhaps I had a bug that finally worked its way out of my system? Did it cause the dehydration or did the dehydration cause the ick? Did I just have to get to the bottom before I could bounce back? I don't know what the answer is, but somehow I did bounce back today and hopefully tomorrow will be more of the same.

I had my meeting with the pain management doctor this afternoon. After describing my pain and experience to him, he agreed that it sounds like some of my pain may be more neurological and he gave me prescriptions for all new medications which I'll pick up tomorrow after my radiation treatment. I'll be ditching the Fentanyl patches, the Miralax and the stool softeners in favor of a regimen of Methodone, Neurontin, and Lacfulose. He gave me his cell number and told me to call if I have any adverse reactions or other issues, and asked me to call him on Monday to tell him how things are going. Hopefully, these will get me to where I need to be, only time will tell, but he did caution that it may take a little adjustment here and there to get the dosages right, so the waters could still be a little rough ahead. I'm always a little nervous starting a new medication on a Friday because it usually means that if something goes wrong, Urgent Care is your only option until Monday rolls around, but at least I have the doctor's cell if something does go wrong. I'm cautiously optimistic that these new meds will work. The proof will be in the pudding.


On a side note, when I picked up my Vicodin refill the other day. It was the first time I had to pay for it. My previous prescriptions had been in December and we were up against the annual out of pocket maximum defined by our health plan, so insurance had covered them in full. Now that the new year has rolled around, all of that starts over, so we pay more "out of pocket" for now until that maximum is reached for this year. As I picked up my prescription for 100 pills of Vicodin, the cost was almost $250. That's $2.50 per pill. I was struck by this because Vicodin has been around for a long time. This isn't some new drug fresh off the clinical trials and on to the FDA approved list. Surely by now the patent has expired on this stuff and whoever held the patent has recouped their development costs as well as their costs to bring it to market. So it begs the question, why the hell is this stuff $2.50 per pill? From what I can tell doing a quick web search, it looks like this stuff has been around since the 1920's. I'm sure that I won't like the answer to that question, whatever it is.

Monday, January 21, 2013

Roller Coaster of Blah

This weekend was full of blah as my bowel discomfort continued. I spent the better part of the day in bed on Saturday and about half the day Sunday. The pain level was about normal both days, though it got a little worse sunday evening. Mostly I just had this feeling in my gut that I can only describe as rotten. I wasn't nauseas and didn't have to spend that much time in the bathroom, just had this rotten feeling all weekend. Along with that came a disinterest in eating so I largely made it through the weekend on granola bars, saltines and Ensure. It's possible that I had some form of food poisoning or maybe something is going around as my oldest had a mild fever and tummy ache on Friday, but I didn't have any of the normal symptoms of either. My wife pointed out that all of the pain medication I'm on could be masking symptoms that I would have otherwise had. Anything is possible, it's just one more thing that I have no explanation for.

Still felt it a little today, but it was much better. I at least felt like eating today, though some of my normal pains were a little above average and persistent throughout the day. I told the radiation nurse about my weekend and they said that it was too soon for the radiation to be responsible, especially given that I didn't have any nausea. He told me to keep an eye on things and let them know if anything changes. I called my oncologist's nurse to get a refill on my Vicodin. When she called back I told her about the gut issues, but she had no suggestions either.

She did ask how my pain has been and I told her that it has largely been the same. I take 5 or 6 Vicodin per day on top of the Fentanyl patch. She called me back later after speaking to the Oncologist and referred me to a pain management specialist. The goal has been for the patch to take care of all of the pain without needing to take the pills with any regularity. My pain level has seemingly remained the same as the medication has gone up. It's always just beyond where it should be. The patch plus the pills have kept it tolerable, but haven't really done away with it. I called the pain management doctor to schedule an appointment. The person that I spoke to said that they would review my information and call me back tomorrow to setup an appointment. Apparently this doctor only sees outpatients on Monday and Thursday, so hopefully I can get in to see him on Thursday and hopefully he'll have some idea on how to deal with this and hopefully this rotgut will go away by morning. That has kept me down more than the pain. I'm glad today was a company holiday, we'll see what tomorrow brings.

Friday, January 18, 2013

Better

Today was a much better day, for me anyway. Whatever was messing with my system yesterday seemed to have moved on in the night. Felt pretty good today for the most part. Unfortunately, my 5yr old came down with a fever. Hopefully she didn't have some form of whatever I had, but she seemed to feel better by the end of the day.

My treatment today had just a bit more of that space odyssey surrealism as they were playing opera music while i was being levitated and orbited by the machine. I'm still waiting to hear from Hal.

3 day weekend coming up, though the treatment center is open on Monday so I'll still be going in for treatment on that day, otherwise, I'm hoping for an uneventful long weekend with the family.

Thursday, January 17, 2013

Lost Day

I spent most of the day in bed today, only getting up to go to my radiation treatment. I'm not sure what has come over me, but I had some kind of stomach thing today. I felt a little nauseas, but not enough to throw up, at the same time felt constipated and just had a general icky feeling in my gut. I didn't feel like eating until around 5:00pm at which point I forced down a little food. I took the day off from work because even when awake, I just didn't feel like doing anything.

I hope this isn't a side effect from the radiation. They had told me that incontinence could be a side effect, but when I told them today that my stomach was off, they seemed surprised that I would be feeling those effects after only two treatments. I guess we'll see what happens. Hopefully my all day sleep won't turn into an all night awake. I'm still tired and sleepy despite it all, but mostly I'm tired of this icky feeling. I'm also tired of the pain, minimal though it is with the medication. I've always had a pretty high tolerance for pain, but now I'm discovering that tolerance is waning over time. I'm sick of being sick. I know there are others who are or have been worse off than I am now and that I should be thankful that it's not worse, but that doesn't change the fact that I'm ready to be done with this. I know it's a slow recovery process, but patience has never been a virtue that I've embraced. It's especially hard to be around the girls with all of their energy and to be tired all of the time and unable to interact with them at the level that they and I would like for me to. It makes me feel like a bad parent to have to tell them no to go play on their own.

Days like this seem to always follow a couple of good days which is what I just came off of. Today was also my day to change out the Fentanyl patch which tends to be a less pleasant day as well. I hope that tomorrow proves today to be a one off.

Wednesday, January 16, 2013

A Health Odyssey

Laying on the table in the radiation room is a little surreal. It reminds me of a scene from "2001:A Space Odyssey" as I lay there on the table, looking up at the nature print on the ceiling (cherry blossoms) and the table slowly rises then moves back into the machine. Then as the scans and radiation doses take place the machine rotates around me, it sort of gives a visual sense of weightlessness. The only thing missing is hearing "Blue Danube" through the speakers and I keep waiting for the technician's voice to sound a little more Hal-ish. The whole process only takes about 10 minutes start to finish. As soon as I am fully relaxed, it is over.

Prior to going in today the TV in the lobby had "The View" on with subtitles enabled. It was amusing to watch the subtitles try to keep up with the shows hosts' incessant babbling and talking over one another and I felt a little sympathy for the people who have the job of trying to capture subtitles on a live show, especially that one. It's hard enough to listen to, much less try to write it all down at a full pace. The sad thing is that there's probably not anything worthwhile that gets missed by those who depend on the subtitles for their content.

Overall, I felt OK today though my stomach has been a little off today. I've been hungry, but hesitant to eat anything heavy. This afternoon is occurred to me that the main potential side effect of the radiation is incontinence. I don't know if that explains it after only two treatments, but at the moment it's the only explanation that I have.

Radioactive

The last couple of days have been pretty good from a pain and comfort level. Monday I felt somewhat off and barely ate anything, but otherwise felt OK. My wife pointed out that I've been off since starting the 100mg patches last Friday. Even though I was taking a 100mg dose before, there may be something in having it all in one big patch that is taking some adjustment. She's noticed a pattern every time there's been a change in my pain medication. On the plus side, the lower dose Vicodin have been working just fine. Today was better. I woke with an appetite and ate pretty normal throughout the day.

I also started the radiation treatment today. Yesterday I went in for the "simulation" where I was scanned and inked. They ran me through a CT scan several times to get the right positioning and then marked me with tiny tattoos as alignment points. The treatment today took slightly less time as they took several X-rays to make sure everything lined up correctly. The treatment itself was nothing and only lasted a few seconds. If it weren't for the buzzing sound the machine made, I wouldn't have even known it had happened. I don't know what kind of radiation is actually used in this treatment, but hopefully I won't have any rage issues afterwards, though they did suggest that I wear sweat pants from now on.

I get to go back and do it again for each of the next 13 business days. Unfortunately, my time slot is 11:10AM, so it will be cutting my day in half. They said that I would get a choice of times to choose from, but I didn't realize that meant that I could choose from 11:10, 11:20, 11:30, or 11:40, not like there's much difference there. This may foil my plans for attending the company sales conference at the end of the month, but perhaps that is for the best.

Last night, I broke down again for no particular reason. I had gotten such outbursts under control and it came as a bit of a surprise without anything seeming to trigger it. I'm still not sure why, perhaps just sick of being sick, but I got it out of my system. I don't know why, but the random thought occurred to my yesterday of how fortunate I am to have my wife and kids helping me through this and how difficult it would be were I still single and living alone. It's something that I'd rather not think about and am glad that I don't have to. This could have been what set me off later in the evening, though it was several hours later. In some ways I feel like this has driven my and my wife apart somewhat, at least physically, as my discomfort makes it difficult for me to sit or lie close to her. She disagrees, stating that the baby has been more of a physical wedge than the cancer, and perhaps she's right, but either way, the routine that we've fallen into of late makes it seem that way. I hope the radiation fulfills its promise by the time the baby becomes a little more independent and perhaps we shall see what holds true. Emotionally, we are probably closer now but it's sometimes difficult discern the balance between the two.

I sent an email today to my employees letting them know of my situation. My two direct reports have known for some time, but I figured that it's time I let the rest of them know why I haven't been around for most of the last 2 months. I don't know why really, but I've been hesitant to send that message. I was hoping to make it into the office for one of our weekly team meetings so that I could tell them face to face, but since I don't know when that will be, I decided it was better to go ahead and get it out there. Things have started picking back up since the holidays and I wanted them to know that I'm still around even if not there physically.

Sunday, January 13, 2013

Rip Van Winkle

I'm not sure what came over me today(Saturday). After the baby woke us up later than usual around 4:00AM, I got back to sleep somewhere around 5:00 and managed to sleep in until 10:00 thanks to my wife closing the door and keeping the kids at bay. I got up ate breakfast and then started feeling drowsy. By noon I couldn't keep my eyes open so I went back to bed and didn't wake up until 3:00PM. You'd think with all of that sleep, I would have had a hard time getting to sleep in the evening, but I had no such trouble. At the normal time, around 10:00PM, I went to bed and right off to sleep.

Also unusual about the day, perhaps due to all of the sleep, I got through the day only taking 3 half strength Vicodin.

The pills that I had been taken had a strength of 10-350 which means 10mg hydrocodone and 350mg acetaminophen. I had been instructed to take one every 4 hours as needed and that I could take 2 if necessary. I've been taking 4-5 per day, only needing to take two on a few rare occasions. I got a refill this week and there was some mixup, whIch I didn't catch until after i got home with it, which resulted in my new prescription being filled with a 5-500 strength version of the pill. That's half the narcotic but nearly twice the acetaminophen. I was a little concerned because you can only take so much acetaminophen per day so doubling up on this lower strength variety wouldn't be an option if I needed the equivalent of the previous pill's double dose. This is what I mean by half strength since it's half the narcotic strength of my previous prescription.

Surprisingly it's been OK. The half strength pills seem to be doing the trick for now. Hopefully this is an indication that things are getting better in some area and makes me look forward all the more to this week's coming radiation treatments. We'll see what Sunday brings.

Friday, January 11, 2013

A New Hope

I met with the Radiation Oncologist today. It was just a consultation and took a rather long time, but I came away from it with some renewed optimism. He looked over my bone scan and the one area that jumped out as most affected actually corresponds with what feels to be the source of most of my pain which is just on the top of my right hip near where the spine connects. (He had a medical term for the spot, but I can't remember what it was.)

Anyway, I go back on Monday for a simulation. As explained to me, this is kind of a dry run at the treatment. They'll put me up on the table in a cat scan which the doctor will monitor and mark on the screen in real time. Where ever he marks, the machine will point a laser at my body to mark the location for the radiation to be pin pointed. Once they have all the necessary spots isolated, the will mark them with what he called tiny tattoos. These will be alignment points for when I go back for the actual treatment so that they can be assured that they are hitting the correct spot consistently. After that, we will determine a date and time slot for the first treatment some time later in the week. I will then have to go back to receive a treatment every day at the designated time for 2 weeks or so. The nurse told me that each visit will require a half hour or so for them to set everything up and line up the machine with my "tattoos", then the actual treatment will only take about 3 minutes.

He seemed quite confident that this will help to alleviate my pain though he cautioned that it won't happen overnight and I probably won't start actually noticing improvement til near the end of the two weeks, but should continue to improve over time following the completion of all of the treatments. Ironically, there should be little to no side effects save the possibility of having irritable bowels as a result. Considering this is the opposite of the side effects I am experiencing from the pain medication, I'm hoping that they cancel each other out leaving me with normal bowel function. I really appreciated him explaining it all out for me, even so far as to put in layman's terms how the radiation actually treats the tumor. As I understood it, the reason for the delayed result is that it doesn't really kill the tumor as much as it renders the tumor's cells unable to reproduce so as the tumor cells die out from their natural life cycle, there are no new ones to replace them. Makes sense to me.

I'm usually not one to jump the gun with either good or bad news. I generally try not to dwell on what may happen. A phrase I've often told my wife is "I'm not going to worry about it until I actually have something to worry about". It's been difficult to live up to that with this cancer business is largely full of unknowns. Many people have asked me what my prognosis is and the fact of the matter is that, at this point, it's too early to even speculate. However, there were a few things about today's consultation that make me cautiously optimistic about this radiation treatment. First, the doctor was very matter of fact and made this sound very routine. He didn't give me any best case or worst case scenarios nor talk about chances of success. His language was more along the lines of "This is what we will do. This is what will happen." Second, he conveyed that the treatment wasn't a must have. He even offered me the choice of whether to go ahead with it, stating that we could just continue with my current treatment and let the Xgeva do it's thing over time. He seemed equally confident in the outcome of either procedure, but the goal in doing the radiation is to get this pain out of the way quicker so that I can resume a more normal lifestyle while continuing with the rest of the current treatment.

Many people have kindly offered me help saying "anything I can do..." but really there hasn't been much that we've needed help with. I've been saying all along that if I can just get this pain out of the way, and stop taking the pain medication, the rest will be much easier to deal with and it removes the most prominent of the unknowns that I'm facing which has been "when will the pain stop?" because if the pain stops, I can get back to my normal routine. I can get out of the house, go back to the office, attend social gatherings, etc. and that will do more for my morale than anything else right now and will probably help my wife's morale as well as she'll no longer have to worry about my comfort level day in and day out.

Here's hoping that the radiation ends up being all that it's cracked up to be.

Wednesday, January 9, 2013

Good Day

Today was a good day, probably the best day I've had in a couple of weeks. I was dreading today a little because there was a lot going on at work and I have several lengthy calls scheduled today and I wasn't sure how well I would hold up sitting through them. It could have been an even worse day as there were a few minor crises that developed in the afternoon. But I had a good day nonetheless, a relatively pain free day, and I otherwise felt pretty good all day to boot.

An old friend came by and took me out for lunch. I survived without incident and it felt good to be out of the house for while. The short trip into down didn't even aggravate any of the usual pains.

After work I went to the store to pick up a prescription refill and a few other things. I made it through that relatively well, though some of the usual aches had returned by the time I got home. A short time later, another friend came by to offer his assistance with whatever we needed. Surprisingly, the baby let him hold her for an extended period of time and the other two kept their focus on him, so we were able to catch up on some laundry and other chores that had been largely neglected lately. With all of the offers of help that we've received since telling people about the cancer, we really haven't been able to think of anything that we could take people up on doing for us, but what neither of us realized was just how much help it could be just to have someone else hold the baby and keep the girls occupied for a couple of hours. It was unbelievable how much we were able to do with that couple hours of assistance.

Today was a good day. Hopefully it will be the beginning of several more.

Tuesday, January 8, 2013

Manic Monday

Monday wasn't a very good day. My wife was taking the kids to the Baltimore Aquarium and since my office is on the way, I decided to tag along and let them drop me off at the office for a while. All that did was to verify for me that I'm not yet ready to get back to the daily commute. I actually felt pretty good before getting into the car, but took a Vicodin for good measure. The ride was uncomfortable all the way down and once I got to the office it didn't get much better. Converting my desk to stand mode helped as standing was more comfortable than sitting, but by 2:00 I had to take another Vicodin. After that, I started to feel better again until it was time to leave and I climbed back into the car. My level of discomfort was pretty high by the time we got home and I doubled up on the Vicodin. Went to bed a little early and had no problem going to sleep and managed to sleep until the baby woke us up at 4:00. I am feeling better now, but lesson learned. It may be a while before I'm up for daily travel again.

Monday, January 7, 2013

Sunday, Jan 6

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.”

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.

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.

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.

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.

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.