Thursday, April 25, 2013

NIH Part Deux

The last 5 days have perhaps been the best that I've had since this disease first reared it's ugly head almost a year ago. It has been 5 days virtually pain free. Sure I've felt a little discomfort here and there, but aside from some pain in my legs at bedtime and various pains when I first wake up in the morning, there's really not been much else to talk about. I've been down to only 2 Vicodin per day, one first thing when I wake up in the morning, and one at bedtime. The primary source of pain that I have dealt with has been in my knees and Icy Hot applied around the knee seems to be handling that for the most part.

After spending part of the day on Saturday doing yard work single handedly, I had some friends come over to help me complete it on Sunday. Quite literally doing the work of 8 people, we knocked out what would have taken me the rest of Spring to accomplish, assuming that the weather and my health had cooperated.

Monday I returned to NIH for a follow up visit. They again took blood and I met with a doctor to go over my case. It was largely more of the same as the doctor re-affirmed what had been said the previous time and acknowledged that my current trend in PSA levels seems to indicate that the current treatment is on the right track and that they recommend keeping on it for now.

I even made it into the office two days in a row, spending today and Wednesday there once again working at my desk. So far, there has been no down side to all of this. I've expected each day to wake up feeling the after affects of the previous day's efforts and needing a down day, especially after two days of doing yard work on the weekend, but so far that has not been the case. The most impact I have felt has been to get sleepy a little earlier in the evening than normal.

I've even been sleeping through the night which is largely why I haven't been posting as much here. Traditionally I've done most of my writing while awake at 3 in the morning dealing with pain and waiting for a Vicodin to kick in, but lately I've had no such opportunity.

All of this sounds like good news doesn't it? It truly feels like things are moving in the right direction and I'm that much closer to being back to where I need to be. Then this afternoon, the doctor from NIH called to tell me my PSA score from the last blood test: 1.42. This sounds good, it's a very low number and well within the normal range, however, it is higher than the 1.09 reading from just 3 weeks ago. The doctor sounded concerned that it had gone upward and wants me to come in to get a CT scan to compare against the original and get more blood drawn. He also mentioned considering one of a couple of trial that they had told us about the first time we visited there.

I'm not sure what to think of this. It's a single data point, so I don't know if this is a fluctuation or a trend. Is this something to be worried about? I just don't know. I've been so encouraged by all the events of late, this feels a little like having the rug pulled out from under me but I'm not sure at this point if that is the case or if it's just the rug being tugged on a little. Only time and further testing will reveal for sure, but it was a bit of a discouraging way to end the day today.

At this point, I don't know if I have anything to be worried about, therefore I'm not worrying just yet. We'll see what the next few weeks bring. In the meantime, I'm going to enjoy my newly acquired state of normalcy until it's no longer prudent to do so.

Saturday, April 20, 2013

More Normal

Today I felt more alive than I have since my diagnosis.

I woke up with some minor pain as usual but it melted away by mid-morning, as usual. The weather outside was gorgeous though a little chilly and, being spring, the grass has already grown enough to need mowing so I got off my duff and mowed the back yard. After that I had to run to town to get more gas for the mower and a few other things. By the time I got back, it had warmed up enough to knock the chill out of the air and was actually quite warm out in the sun, especially in my now signature corporate shill black hoodie that I've worn pretty much every day since the beginning of the year.

I spent the rest of the afternoon out in the yard completing various tasks that needed doing, mostly starting the annual spring cleanup in preparation for this year's gardening. I even got the girls to help for 5 or 10 minutes. Now I've stopped for the day and am sitting here, on the deck, watching the sun slowly descend over the mountain. My knees ache a little, but it's barely worth mentioning.

In comparison to what would have been a normal amount of work around the house a year ago, I didn't get that much done today, but compared to what I've been able to do the last few months it was quite a lot and I'm not feeling overly exhausted nor feeling any worse for wear. I may pay for it tomorrow, but it will be well worth it.

I think that the lesson for today was that I need to get up and start doing something other than sit around the house wallowing in the ache of the day. Just like when I would bring up firewood in the winter, it seems that the more I move, the less I hurt and the weather has now become much more hospitable toward doing so. I'm not quite back to the old normal, but I'm feeling more normal than I have in many months.

Wednesday, April 17, 2013

Day On, Day Off

Things have continued to go well, for the most part, over the last week or so. I had an appointment with the pain management specialist last week and he decided that my recent progress and the fact that I keep nodding off at random times where I sit together indicate that it's time to back off on the dosage of my pain meds.

Wait, didn't we just increase them a couple of weeks ago?

He had me cut the Methadone and Lyrica doses in half and gave me an additional once per day anti-inflammatory called Meloxicam. I was skeptical when he said this, but I have to say that there has been no negative impact to doing so. I feel about the same, pain-wise, as I did on the higher dosage and am down to taking only one Vicodin per day, if at all, so I guess he made the right call.

My sleep is still somewhat unpredictable with getting to sleep being the biggest challenge. Once I get there, I'm usually good for the rest of the night. Of late, I've developed this tendency for my knees to start hurting within an hour of going to bed, so I get up and sit in the living room with my legs outstretched until it wears off, then I go back to bed with no further complications. It makes no sense, but not much does these days when it comes to my body.

I made it to work again on Friday and all went well for the most part, but on the ride home the ache in my left forearm returned. This is that mysterious pain that shows up at random, ignores all pain medications, including the neuro ones, and then goes away after an equally random period anywhere from hours to days. It has a pinched nerve feel to it, though I don't know if that's what is actually causing it. Even though the pain manifests in my left forearm near the wrist, I can feel it all the way up my arm and into my shoulder. This time it decided to linger through the weekend and into Monday, then I woke up Tuesday morning and it was gone.

Sunday we took the kids to see the circus about an hour and a half drive from our home. Other than the persistent ache in my arm, the ride was otherwise uneventful. It was my first time to see the circus as well as the kids. The only one I ever went to as a kid was one of those small circuses that goes around to small towns and sets up in the parking lot of a shopping center. It was good to go out together as a family and enjoy ourselves for the day. The ride home, like the ride out was uneventful and I arrived back at home feeling about the same as when I had left.

After such a great day Sunday, I should have expected Monday to somehow be less. I woke up still with the ache in my arm, and some minor pains in my hips and legs, but really no pain worth mentioning, still, I felt off all day. Even feeling off, I didn't have a Vicodin from mid day Sunday til late Monday night, and I only took that one in hope that it would help me to get some sleep. It seems that even though I can now get in the car and go out for a drive, every time I do, I need a down day afterwards. It somehow takes something out of me that requires a day of recuperation to recover from. It's strange because I don't feel especially drained at the end of the day after an outing, in fact, I sometimes feel pretty good afterwards, but inevitably I wake up the next morning feeling off and not fully up to the day's tasks, but it only lasts for a day.

Sure enough, I woke up Tuesday feeling fine as if the blahs of Monday had never happened. I went on in to work and even went to a local meeting afterward, not getting home until almost 10:00PM. Then today, I woke up feeling off again and stayed home.

Overall things continue to look up, my meds have been cut in half and I'm in no more pain. The as needed Vicodin have become less needed and I'm able to get out or get into the office again. It's still two steps forward and one step back, but the overall direction is forward. My first hurdle to overcome was being able to ride in the car. The second was to be able to work in the office again. Now I just need to be able to increase the frequency and to be able to do it without having a down day afterward. I'm getting there, but still slowly and I'm still impatient.

Tuesday, April 9, 2013

No Complications

I went back to the office today. After months of being unable to, months of feeling imprisoned in my own house, months of desire to get back to work in a more real sense, I went to the office today.

I got up this morning a little before 7:00 with the usual aches and pains, limping around the kitchen like some extra from "The Walking Dead". I took my medications, made myself a cup of tea, and sat down on the floor to stretch and catch up with the morning's headlines while waiting for the medicine to go to work before me and melt the pain away. It took a little longer than usual. I guess that was a little stiffer than normal this morning as I ended up laying down, spread out on the hardwood floor, in what felt like the most comfortable position I could find. My wife says that I drifted off to sleep for a short time but I later woke and the pain was gone. I could get up and walk around. I felt mostly pain free. There were still tinges of pain, but those are ever present lest I get smug and forget about the pain altogether. The tinges are always there, but they can be suppressed enough that I can be distracted from them and this morning I was distracted. As long as I wasn't sitting and focusing on them, I could forget they were there for brief moments and I could string those moments together with the right distraction(s). I decided that I would try going in to the office.

By the time I made the decision, got showered, shaved and dressed it was almost 10:00AM. A little late to be leaving for the office, but my calendar for the day was clear and today was about making it to the office and back it wasn't about getting there at a certain time. I got myself together and tried to remember everything that I needed to take with me. Yes it has been that long, long enough that I could no longer run on autopilot. The one thing that I almost did forget, which was not part of the original routine, was my medication. I had to make sure that I took enough Vicodin to get me through the day as well as the rest for my mid-afternoon dosage.

Once I was sure that I had everything. I headed out the door, got in the car and drove off to work. The drive seemed a lot longer than I remembered. Previously I would pretty much go on autopilot, not noticing the scenery passing by me and the next thing I would know, I was at the office. Not today. Even though I was going in late enough to miss all of the traffic, the drive seemed to take forever, like I was never goigng to get there, but somehow I did manage to get there and I pulled in at just a little before 11:00. There has been some growth at the office since the end of the year, when I started working from home, and that was evident by the lack of available parking spaces. I found a space a little farther out than I'm used to, got out and went in.

I had arrived with no complications. I felt much the same as I did when I had left. The time in the car had neither caused me pain nor exacerbated any existing pains and I felt about as good as I could feel, at least as good as I would have felt had I remained at home. Most folks were surprised to see me. I had told one of my managers of my plan to attempt to drive in today, but had left it without any promises and I think that he had kept it to himself. No one seemed particularly shocked, but all welcomed me back and were happy for my return.

I had picked today to float this trial balloon partially because I had nothing on my calendar today. With a blank slate, I felt that if complications arose and I had to turn back on the way in, or shortly after arrival, then it wouldn't disrupt anyone else's day to have to reschedule. This turned out to be good for reasons that I hadn't predicted and that is that I got very little work done while there today. When I arrived, I spent the first hour or so hanging around my team's common area talking to different members of the team, catching up with them in person for a change, and finally getting to meet some of my newer employees for the first time. (I've been out long enough that we've hired 3 or 4 people in the mean time that I had yet to meet.) After that, I settled back into my office to catch up on the morning's email which set in motion the pattern for the rest of my day. A steady stream of people passing by, noticing that my door was open for the first time in 4 months, who then came in to wish me well, tell me how glad they were to see me and catch up a little on where things stood, both professionally and personally.

By the time things quieted down enough to where I could actually get something done, it was 4:30. I had planned from the outset to leave around that time, partly because I didn't want to push it on my first day back, and partly because the last time I drove to the office, it wasn't a particularly good experience and I got stuck in some freakishly abnormal traffic on the way home that made the commute take twice as long as normal, with the pain in my legs building over the course of the entire drive. I wanted to get out early to minimize the possibility of repeating that again. By the time I got things would down and packed away it was a little after 5:00 and I was surprised by encountering freakishly abnormal traffic of the light variety. I made better than average time, stopping off at the grocery store on the way to pick up a few things. I got home just in time to put the girls to bed, much as I used to, again with no adverse affect. It seemed a little odd, not being there for the 5 o'clock crazies when the juxtaposition of the day's fatigue and their last bit of energy collide which results in a lot of calisthenics, not much listening and a little bit of yelling before starting the process of herding them toward bed.

Unfortunately for my wife, she got to endure the crazy hour all herself which topped off a day which dredged up feelings in her of feeling like a single parent. It's the elephant in the room that has been there since my diagnosis, the possibility that this illness may cut my time on this earth short. It's something we've talked about, even though we don't want to talk about it and would rather not think about it, but its shadow is ever present. My being gone from the house today brought it out of the shadows a little for my wife.

She's been largely handling the girls on her own since my diagnosis. Feeding them, getting them dressed, taking them to gym practice, riding lessons, dance class and other activities that they are involved in. She's even gone out of her way on many occasions to find excuses to get them out of the house so that I can have some time to myself away from the chaos. But though she's been mostly doing it all by herself, she hasn't been doing it completely by herself, especially not since the baby was born.

Since that event, I've always been there to hold the baby in an emergency, to change an at capacity diaper, to make the girls lunch or dinner, to help get them all into or out of the car, and a hundred other small things. Even though she's gone to great lengths to act as if I'm not home so that I can get my work done, I've still been there in a pinch and that was something that she could count on. Today I went to the office and I was no longer around and not just in the pretend sense. She had to do it all herself, which she's done a thousand times before, at least with the first two girls, but not having me around today I think shed a little light on that elephant in the room and it brought back feelings that she's successfully gotten past a number of times over the last four and a half months, but the elephant keeps sticking his head out like he did today.

I hate that she is burdened with that elephant. I hate that days like today keep reminding her of his presence, and I hate that there's nothing I can do to make him go away. It puts a tremendous amount of pressure on her that she doesn't deserve to endure especially not in the form of a mere possibility.

Today I made it to the office and back with no complications. No physical complications anyway...

Monday, April 8, 2013

1.09

The folks at NIH called me today to follow up on my visit from last week. They first wanted to make sure that I walked away with a correct understanding of where we go from here and to let me know the results of my blood test that they took while I was there.

When I was first diagnosed, my PSA was 12. "Normal" is considered anything under 4 or, in my case, normal is as low as possible. My oncologist took another test at the 3 month mark back in February at which point it was 3. At that point I didn't want to get too excited because it was a data point of one. Not much to go on really, it could have been a fluke, it could have dipped down and then shoot right back up. Anything could happen, so I took it for what it was, a good indicator, but nothing more.

Today when they called, I expected them to say that it was still 3, or perhaps 2.5 or maybe even 4. There was also the possibility of are more worse case scenario in which it was back at or above the level from my diagnosis. What I didn't expect was the number to be 1.09. Even though it's still only two data points, it is a trend and it's a downward trend. Maybe I am getting control of this thing. Maybe the treatment is, in fact, working. Maybe I will beat down this cancer after all. They cautioned me that it will probably never get to zero, that it will probably go below 1 but not all the way down. I can accept that. As long as it hits a low point and stays there, I can accept that without a problem.

Now if I can just get this pain under control...

Can't Fix This

The thing that I've had the most difficulty coming to grips with is the permanence of this disease I've contracted. It somewhat washed over me in the beginning. I heard the doctor say it, but didn't let it sink in. It wasn't until I went in for my March oncology visit, with the nurse practitioner instead of the doctor, that it became clear.

She mentioned that I would be taking the Xgeva shot for the rest of my life and it was at that moment that I realized that I had misunderstood things. I had heard them say that the Lupron would be my permanent date, but I thought that the Xgeva was temporary fling, that it would get this crap out of my bones and from that point we would just keep the prostate in check. Apparently I had misunderstood that both parts require permanent bombardment and I hadn't really prepared for that.

Further discussions a few weeks later at NIH further cemented it, but by then it had finally sunk in. Terms like "remission", "cured", and "cancer free" are not to be in my future. I will never lick this thing or "kick cancer's ass", as many have encouraged, unless some new medical miracle comes along in the next few years, this will be with me for the rest of my life. It is something that I will battle until the end and the best that I can hope for it to get it under control and keep it there.

People often ask me what my prognosis is and the fact of the matter is that there isn't one and there won't ever be one. The time that I have left is unknown, like it is for everyone, but it's a little more certain to be shorter than it would have been otherwise. I will never be a former cancer patient. I will have to continue to check my PSA at regular intervals, along with several other tests. I will have to keep my testosterone level suppressed permanently. I'll probably have to get regular bone scans, CT scans, MRIs and who knows what else at regular intervals. I'm getting better, or at least I'm feeling better, but it's possible that I may never feel good enough for extended travel again. I may not be able to visit my family regularly down in Texas and I have no idea what the impact will be on my wife and kids down the road however long that road happens to be.

It also means that I'll have to be more careful with my career as things progress. I've been with my current employer for 10 years and I have no inclination to go elsewhere. I enjoy working there and they have been good to me, especially since all of this has started. They also have really good health coverage, at least for the present. Before, that wasn't much of a concern. I never got sick, rarely went to the doctor, and had no "pre-existing conditions". Now, if I were to consider making a change, I have to take that into consideration. What would the next opportunity offer along that front? What kind of hassles would I have transitioning? I know the new legislation supposedly did away with the pre-existing condition objection, but is that the reality in practice? What if something were to happen to the company? In my current condition, would I be able to start another job? Would I be able to search for one? These are all questions that weren't even a consideration 5 months ago.

OK, fine, it is what it is. I'm stuck with this like a poorly chosen tattoo. I'll have to continue treatment for as long a God allows me to continue walking this earth. It's just a couple of shots, really not that big of a deal, right? Well, then I visited the fine folks down at the National Cancer Institute at NIH where they explained to me that often the hormone therapy that I'm presently on only works for a certain amount of time before the cancer figures out how to get around it, usually about 2 years, at which time I'll have to switch to something else. Apparently in some cases, the cancer, starved of testosterone by the treatment, figures out how to synthesize it's own testosterone to keep going like some kind of perpetual motion engine. Not really something that I wanted to hear.

After my last visit on Monday, they called me back on Thursday to let me know my PSA score from the blood test they took, 1.42. It was back up from the score of 1.09 three weeks earlier. It certainly doesn't sound like that big of a deal to me, as I've heard that PSA can fluctuate, but apparently the fact that it went back up instead of holding steady or continuing to go down and that it moved that amount in only 3 weeks, caused the doctors there at NIH some concern and they would now like me to come back for some further tests and to consider possibly going into a study that they have going on that would be in addition to my current treatment.

One reason for their concern is that there are a lot of unanswered questions like the fact that my second PSA reading from back in February was taken a week after I finished my radiation and since the radiation has some carry over was the downward trend caused by the radiation rather than the treatment? Is this upward change now a movement back toward "normal" as the radiation wears off? I hesitate to say there is an upward trend as we only have only one data point in that direction, but it is a negative change nonetheless. Don't get me wrong, I'm glad that they "caught" this and are concerned about it. I'm scheduled for my next test with my oncologist on May 9th. It will likely come back at some number lower than 3 and my oncologist would have assumed that we have a positive downward trend with three readings of 12, 3 and less than 3 had I never visited NIH. If something truly is amiss, it would not be caught for several months so I'm glad for the extra attention. I just wish the roller coaster would level out for a while.

Whatever the future holds, I'm praying that a breakthrough will be discovered in the meantime while my treatments keep me going. I'm praying for a breakthrough that will allow me to have a prognosis and to be able to use words like "remission", "cure" and "cancer free". I'm praying that somebody can find a way fix this.

Tuesday, April 2, 2013

NIH

The last few days have been pretty good ones. Pain has been moderate and is once again wandering but has been mostly in my lower back of late. Vicodin has kept it under control for the most part.

Thursday I went in for a bone scan which sounds more ominous than it is. I had to go in first to get an injection of some kind of radioactive marker which then settles in my bones so that it shows up clearly on the scan. I then go back later in the day to get the actual scan which looks a lot like the machine that I got my radiation treatments from. Anyway, I had to lay there for 45 minutes while this thing passed over me at a snail's pace.

I later picked up a copy of the results so that I could take it with me to my assessment at NIH. The report stated "overall improvement" from the last scan that I had. I haven't yet talked to my doctor about his impressions from it. I don't think that he was only looking for a level of improvement, but wanted to look at some of the details of the scan to determine if the current pain regimen is the correct one.

Saturday was a nice day so I decided to do a little yard work. After about an hour, that was about all that I was good for so I just sat out on the deck and enjoyed the day while watching the girls play on in the yard. By evening, I was feeling some pain in my back, most likely due to the yard work. I'm out of shape, tired, and atrophied enough that an hour's work takes quite a bit out of me, plus the work started with some difficulty getting the motor started on my leaf vac. It didn't want to start at first and took some persuasion to get it going, but the motions that went into getting it started pretty well matched up to the muscles that were hurting later.

Sunday was much the same as Saturday in terms of how I was feeling. I woke up with some of the usual pains, took meds and went on with my day. We drove out to Westminster to see some of my wife's relatives. I made it out there without the car ride causing any pain. In fact, I was still in some pain when we got in the car to leave, but by the time we arrived I wasn't noticing it anymore. The drive back was much the same.

Went to NIH on Monday. This took the better part of my day as they asked me to be there an hour and a half early to deal with security and admissions. My wife wanted to come with me, so we also had to drop off the girls with her parents who, thankfully, live near the facility but that added to the time needed to get there. Once we got there, we had to go through the whole security exercise of getting out of the car while they looked it over for contraband and we walked through the requisite metal detectors. We each got name badges to wear, even the baby got one. Next we parked and then went about finding our way to the admissions desk where I was asked a number of questions and then given some identification paperwork and a welcome pack. Upstairs in the cancer ward we met a volunteer who explained how it all works to us and informed us that NIH is an acronym for Not In a Hurry. Apparently there can be some rather long wait times, but the reason is that the doctors take as much time with each patient as they need and do not worry about hurrying people through like in a primary care clinic, therefore appointments tend to stack up as the day wears on. My appointment was for 2:15pm and we finally saw the doctor a little after 3:00pm. With everything else that was going on, including the nurse taking my vital signs and a quick meet with the social worker, it didn't seem like we waited all that long.

We met with the fellow assigned to our case who walked through my history to date and asked a bunch of questions about how things were progressing. She then went back and spoke to the doctors on the panel that runs the prostate research and after few minutes she came back with one of the panel doctors and a student that they are training. This doctor talked at length about how the cancer works and what strategies are typically used to attack it. Much of this was review for me but it was perhaps in a little greater detail than I'd heard it before. He talked about some possible trials that they could consider but then explained why he doesn't think that they are right to do at this time. He also spoke of a few that he felt would not be right for me and explained why as well. He also mentioned that the Xgeva that I'm now on is often only good for 26 months or so and that at that point, something else may be needed as the cancer adapts.

In the end, they decided to take a wait and see approach with me for now. My current treatment seems to be going pretty well and there isn't enough data at this point to suggest that something else is needed. They would like to keep an eye on me for the next few months to see if anything changes at which time they may re-evaluate things. He asked me to come back in 2-3 weeks depending on how my pain is over the next 2 weeks. So that's it, no lab rat for me for the time being.

I made it to NIH and back without any complications from the drive, however the next day I felt off for most of the day. It wasn't anything specific, just felt a little drained perhaps. I've now taken 3 rather long drives in the last couple of weeks and have found that I am now able to make the drive without it adding to my pain, but that the day after seems to be needed to rest and recover from it.

The visit to NIH hit my wife pretty hard. Hearing all the information over again and hearing things like the Xgeva may only work for a certain period of time was a little discouraging and brought back all of those feelings from when I was first diagnosed. I think that she perhaps had held a little hope that I'd get into a study that would somehow make it all better, but after talking to the doctors there it doesn't really work that way. "Remission" is not a word that we can ever expect to hear as prostate cancer doesn't work that way. It's not something that can be beaten and conquered but rather must be controlled and managed and that reality can be difficult to swallow. I didn't realize that it had affected her that way until the next day. She kept asking me if I was alright and my answers of "I'm fine" made her think that I was equally impacted by the visit and just didn't want to talk about it. I assured her that my moping around the house that day was all physical, a combination of fatigue and otherwise feeling "off" but that the visit hadn't impacted me in the way that it did her. I've grown accustomed to it all and have accepted the diagnosis, now I just want to get it under control so that we can return to some semblance of normalcy in our routines. I didn't know that it had impacted her as it did and once I learned that it had, I could only stand there helplessly and say "I'm sorry" as there is really nothing that I can do to make her feel better about the situation. All that I can do is offer my love.