The Big ?

The last few of weeks have been full of surprises. I found out that my company is being acquired which places a big question mark over everything. It's too early to know what that will mean for me and that's probably the most unsettling thing about it. This could turn out to be a good thing, it could be a great new opportunity, or it could be just the opposite, and only time will tell. It's the uncertainty that is the terrible oppressive fog that puts everything on hold and makes you feel frozen in place. Knowing what comes next, even if its the worst possible outcome, at least allows you to put together a plan for moving forward but planning for the unknown can be maddening.

Life is full of uncertainty and we usually deal with it by planning for the most likely outcome. Sometimes, if we're smart, we also plan for a less likely outcome at the same time. We call that insurance. Sometimes I feel like I've lived under the cloud of uncertainty for most of my life and though I've always managed to get through it ok, it doesn't get any easier whenever the cloud returns. About a year ago I thought that I was in the clear, things were going well for me and my family and I didn't see any clouds on the horizon. Then, just like a Texas summer thunderstorm, the cancer came up out of nowhere, a wall cloud promising heavy rain. Though I feel like the heavy stuff has passed, the cloud remains. The uncertainty of what is to come hangs over me making it difficult to plan for the future. Now this new cloud drifts in from another direction and I don't know whether it brings rain or just simple shade but it does seem to freeze things in place. 

I feel like I should preserve finances in preparation for the worst possible outcome and avoid any unnecessary spending. It's funny, but the weekend before the acquisition announcement I went out and looked at a Ural motorcycle as a possible solution to my motorcycle conundrum. The hearty Russian made bike comes with a side car that makes the possibility of falling over unlikely and would provide an option to take the girls along with me. After a test ride, I decided to think it over. Even though I could afford to buy it, it's still a lot to pay for the occasional joy ride. Would those opportunities come often enough to be worth it? With summer winding down, should I wait until next spring? I was weighing these questions the following Monday morning when it showed up in my inbox. Another cloud had rolled in out of the blue. Now I look at every expense as money that could be needed down the road.

The prospect of being unwillingly placed in the job market again is always a daunting proposition, one that has never really concerned me greatly, but I was single the last time that I found myself there and had less to be concerned about, and no one depending on me to land that next opportunity. I did not have this cloud hovering over me putting limits on the options that I may entertain. I hate uncertainty and everything that doesn't go with it. I'm a problem solver, it's what I do, but the first step to solving a problem is to evaluate your options and having all of this uncertainty floating above not only obscures the options, but it obscures the problem as well. For all I know, there could be no problem but I don't like operating without a contingency plan. I hope that at least one of these clouds burns off before madness begins to set in.

Speaking of uncertainty, I went to NIH again on Monday and am now enrolled in their study. After a long the day getting irradiated, poked several times, and scanned twice, they arrived at the conclusion that I qualified for the study, the one that is supposed to be for people whose treatment is no longer working. Though I'm not convinced that's the case, they had the data points that they needed to satisfy the entrance criteria. My PSA was up again since the last time I was there, at 3.2. Supposedly they only use that as an indicator and rely more on the scans and other factors to determine progress, but the radiologist's report wasn't complete at the time that I saw the doctor and he was fairly vague on the question of whether or not the scans showed any regression.

Acting on my oncologist's advice of "If I were you, I'd do it", I went ahead and signed up for the study. There seems to be little risk, falling under the category of "it may help, but it can't hurt", though it is also unclear to me how they will actually determine success since the goal of the study is increased life expectancy and considering that most, if not all, of the other participants are septuagenarians. There were two groups that I could be randomized into, the control group, and the experimental group. The study is to determine whether the drug abiraterone combined with another called amg386 is more effective than abiraterone alone. I wound up in the control group which means that I get just the abiraterone. This is in addition to all of the meds/treatment that I'm already taking. 

In some ways I was relieved not to get into the experimental group as that would have required me to drive down to Bethesda once per week to get the amg386 injection and would have made holiday travel plans a little tricky. Instead, I just take four horse pills every morning an hour before breakfast. Then I have to take a prednisone pill with breakfast, along with the calcium supplement and 4 different pain relievers that I was already taking. I am hopeful that this additional treatment will lead to a lessening of my need for the pain pills if not removing the need altogether, but then there's that uncertainty thing. Who knows how my system will respond to it?

Uncertainty has become my new status quo. I don't like it, but it's the hand I've drawn. I really don't need any more and could use a little less. Here's hoping the current clouds move on soon.

Catch Up

It's hard to believe that my last post was back at the end of May. It feels like it was only a few weeks ago. I haven't written anything since largely because I simply haven't felt like writing. Part of it has been because I'm getting more sleep these days. Most of my previous posts were written while I was up in the night dealing with one pain or another that kept me from sleeping but lately those moments of nocturnal solitude have been few and far between. These days I tend to get up only once or twice in the night and am often able to go back to bed rather quickly after taking medication or stretching or whatever is required to quell the discomfort that woke me in the first place. When I do get up in the night, I have a tendency to nod off where I sit only to wake up an hour or so later and return to bed.

A lot has happened since my last post that I wanted to write about but somehow just couldn't bring myself to actuallly sit down and do it. When I saw my oncologist at the beginning of June, I received some news that was pretty devastating to me personally. It probably seems pretty petty to someone looking at it from the outside and probably is in the grand scheme of things, but it still hit me pretty hard. At that appointment, my wife wanted me to ask the doctor if it was OK for me to continue to ride my motorocycle. She was concerned that perhaps the vibration of the motor could somehow cause problems for me with all that I have going on. Ever the skeptic, I was not prepared for the answer that he gave, that he would not be comfortable with me riding, not due to the vibrations, but due to the risk of complications from any injury that I may receive should I get into an accident on the bike. He explained that the cancer in my bones has left me in a similar condition as someone with osteoperosis, that my bones are brittle and weak and that any serious accident would only be complicated by this fact. The Xgeva that I take is to strengthen my bones, to make them harder. It is often given to older women who suffer from osteoperosis which I think I had read when I first started taking it, but somehow that information didn't sink in at the time. 

The news was a shock to me much like my original diagnosis as it was equallly unexpected and had a much bigger effect on me than I would have imagined. You see, riding my motorcycle is one of my few true passions, something that originally brought my wife and I together and something that we've been able to do much less of since the kids arrived. It's difficult to explain the freedom that one feels when riding up and down the hills and around the curves of backcountry roads, difficult at least to someone who hasn't experienced it. Hearing that I couldn't ride again filled me with helplessness, mostly because this is not a temporary condition, but a permanent prescription, a freedom taken from me, that would not return over time. The worst of it was that the doctor didn't outright tell me that I can't ride, just that he "would not be comfortable" with my riding my bike. He had put it all on me, given me the facts of the situation, and advised me that it's not in my best interest, then left it up to me to make the right decision. I thought of writing about it then, tried to come up witih the words to explain how I felt about it all, but just couldn't do it, but my wife did a better job at putting it into words than I ever could have in her own blog.

As I slowly recoverd from my angst over the motorcycle issue, I started having these pains in my legs. At first my pain doctor suggested applying heat to the areas in question for relief and for a while, that helped, but within a couple of weeks it had gotten to the point where the pain continued through my doses of medication without abatement. I reported this to the doc and he had me drop the Lodine from my regimin and switch it out with Ibuprofen. Surprisingly that worked. The Ibuprofen made the pain in my legs go away and I've mostly felt pretty good since then as long as I stay on schedule with my medication. The Ibuprofen is only supposed to be taken every 6 hours and I can usually tell when it's been 5½ hours without looking at a clock as the pain starts to slowly seep back in around then. In the last week or so, I've been able to stretch it out beyond 6 hours here and there and have been taking smaller doses of it. 

With this new regimin in place, I took the family on vacation to Chincoteague Island, VA. Overall the trip was a success as I made it through the week, as well as the 4 hour drive down and back, without any complications. I even rented a bicycle one day, one of those with the kids tagalong bike attached to the back, and took my oldest for a ride around town that lasted a couple of hours. I was surprised that I not only was able to last that long without any pain or exhaustion, but also that I didn't have to pay for iit afterwards. I fully expected to have some kind of pain afterwards even if it was just muscle soreness from putting them through unfamiliar paces, but surprisingly there was none. Other than feeling a little tired and dehydrated, I felt fine afterwards. I took this as a sign that my pain doctor was correct, that my curent pain is largely musculoskeletal and that I need to start getting more exercise into my routine to keep the pain at bay. 

I have noticed that on weekends as I'm out working in the yard, I just don't notice the pain until I stop and sit down for a while. Sometimes while working outside I'll go beyond the time that I would normally need to take more medication and not even realize it until I stop, other times if I feel pain coming on before it's time to take more meds I've found that going for a walk helps to reduce the pain until it is time for medication. It's been difficult to find time to work some kind of exercise into my daily routine, but I now know that I need to find a way to do so.

Today I visited the folks down at NIH again. After my last visit to the oncologist, he gave his blessing for me to enter this study that they've been trying to get me into so now that I'm ready to go for it, they are desperately trying to fit me into the protocol. The study requires that in order for me to enroll there must be evidence that my current treatment is no longer working. The problem is that I am doing great and am continuing to improve. They need data that shows a negative trend which thus far there has been none. It sounds like the bar for proof is pretty low which is why they keep taking so many tests whenever I visit so today they took blood once again and depending on the results that come back, we'll determine next steps. It's a little amusing that they've been pressuring me for some time to enroll in the study and now that I'm wiling, they are now not so sure that I can qualify, but are doing eveything that they can to shoehorn me in somehow.

It feels good to finally get something written after all of this time. If you are one of those following this blog to keep up with my progress, I apologize for the long wait, but "no news is good news" as they say and other than my depression over the motorcycle situation, things have been going really well for me. I seem to have achieved some measure of normalcy and am able to maintain that for the time being. I've been going into the office pretty much every day for the last couple of months without any negative consequences. It's been busy at work which hasn't left me with a lot of time to worry about keeping a log of every ache, pain, or discomfort that I've had. Mostly when I do feel it lately, the level of discomfort has been pretty low with it being more annoyance than anything. Hopefully this current trend will continue for the time being. We'll see what the next few weeks and months bring.

Staycation Plague

I took last week off to have a staycation and get some things done around the house. I was thwarted the first couple of days by rain. Took care of a few things the next couple of days and then the plague set in. The girls each came down with a mild fever and some bowel issues. It eventually caught up with me and took me down for a several days. After the worst of it had passed, it seemed to linger a couple of days longer than seemed reasonable. After sleeping through most of Memorial Day it finally occurred to me that I had practically eaten nothing for four days while continuing to faithfully take all of my medications. With no food in my system, the medicines overcompensated with the pain killers knocking me out for most of the day while the prescription laxative kept me occupied in other ways. Once I realized this, I stopped taking the laxative to give my system a chance to catch up. The next day I felt much better and was finally able to eat something. This was perhaps the worst staycation ever.

Tuesday I went back to NIH to follow up on the last visit and get their take on all of the scans that they took during the last session. It was largely more of the same and they didn't really have anything new to offer that I hadn't already heard. The scans show that it has progressed a littl further when compared to the original scans taken back in December. My PSA for the day was back up to 1.41 which they were trying to claim was an upward trend when you took mother last three readings two of which were taken on the same day of my last visit. It almost feels like they are desperately trying to find an indicator that things are regressing. They are still advocating that I enter this study that they have been promoting all along only now the approach is more of an "it can't hurt" message. They are recommending that I get on Aberaterone either via their study or through my oncologist. The write up for the study says that it's for patients whose treatment has stopped working but now they are saying that it would be better to start it before things get to that point. When I tried to get from them what benefit I would expect to get from the treatment, they mentioned that it had been known to extend the life of patients by 4 or 5 months but that if I took it I may never really know what benefit, if any I recieved from it. It all seems a little thin to me. When I last saw my oncologist he said that Aberaterone would be the next treatment that he would go to when it became necessary but he didnt seem concerned that it was needed at this point. I asked them to write up their recommendations for my doctor and I'll discuss it with him further at my next appointment. The biggest frustration in all of this is the uncertainty of it all. Nobody can say anything with any certainty, they can only speak in potential outcomes.

Today I returned to the office a little worse form the wear. After feeling no pain over the days I was sick and not eating, now that things have returned to normal, so have the normal aches and pains. They were a little elevated today, but that tends to be the norm the day after spending the day trekking down to NIH. I didn't sleep very well last night which probably contributed to it all today. Hopefully tomorrow will even out a little.

Nothing to see here.

My first two days of vacation have been rather unproductive. I've spent half of the last two days napping. I'm not sure what's going on, I haven't felt bad, I've just been tired and felt a little like a lump but otherwise things have been fine. The overcast and gloomy weather this weekend didn't help and I think I have a touch of the spring allergies. Hopefully tomorrow I'll be more productive.

Saw the radiation oncologist today to follow up on the hour long MRI that Inhad a couple of weeks ago. Even though the report showed an increase, he seemed unconcerned and said that while there may be more spots on the scan than the one back in December, it's possible that they were there before just not as visible. He said that it is "clinically insignificant" in the grand scheme of things and is not a cause for concern.

He did say that I looked a little pale and I mentioned that I've been extra tired the last couple of days. After reviewing my file he said that my hemoglobin is down a little since December, not enough to be concerned at this point, but something to keep an eye on, so I may be a little anemic.

Overall, he seemed to agree with everyone else that things are progressing well and that for now we just need to continue to keep an eye on things.

We Now Return to Our Regular Progress

The follow up at NIH proved to be a very log day full of various tests of one form or another. At the end of the day, the doctors came in and told me that my PSA that morning was 0.9 indicating that it had gone back down from the reading a couple of weeks prior that prompted this unplanned visit. I hope I was reading them wrong, but they almost seemed disappointed that it had gone down. They at least seemed puzzled by it and ordered yet another blood test before I left for the day to compare to the one from that morning. They also informed me that it would take some time for them to compare the scans of that day to the ones ordered by my doctors in the beginning. Apparently their system is different and incompatible with the system the local hospital uses, so they would need to do a manual comparison or something. After drawing my blood one more time, they sent me on my way saying that they would be in touch in a couple of days.

That following Friday, the doctor called me to ask how I was doing and to tell me that my PSA at the end of the day was 1.25, further proof of the erratic nature of the PSA readings. He said that they had not yet completed their analysis of the scans and would get back to me as soon as they had. That was a week ago and I haven't heard back from them yet. I have a follow up scheduled for the day after Memorial Day so we'll see what they have to say then.

I had visited my Oncologist the Thursday before all of this and he didn't seem overly concerned by all of it. He stated that the PSA trend was more important than any single value and that he medicine used in this trial is what he would probably put me on if my current treatment stopped working, but at this point there isn't any evidence of that. He ordered his own PSA test that day, but I haven't heard the results from him yet. I saw my pain management doctor that same day and he felt that I'm doing well overall. He asked if the Meloxicam was helping and I stated that I really couldn't tell, so he switched it out with Etodolac and asked me to let him know if that resulted in any change. He did take a quick look at the report from the long MRI that I had the previous Friday and was concerned that it seemed to indicate a spread but asked me to speak to the radiation oncologist about it. He said that it didn't make sense and seemed to run contra to all other signs and symptoms which have all indicated progress. I have an appointement with the radiation oncologist next week, so I'll hopefully know more then.

I don't know if the change to Etodolac made the difference or not, but I've felt pretty good this week. I've only had to take one or two Vocodin per day, usually first thing in the morning and maybe one on the way to bed. I managed to spend some time working in the yard all weekend and made it to the office 4 days this week, all without feeling any negative after affects. The only reason I didn't go in all 5 days was that Thursday I had a series of phone calls all day that started fairly early. Had I gone in, I would have been holed up in my office with the door shut most of the day on the phone anyway, so there wasn't much reason to drive in. Instead I holed myself up in the bedroom all day while I sat on those calls. Otherwise I would have made it a whole week in the office, a pretty significant milestone. I'm on vacation next week, taking a staycation. Assuming the weather cooperates and all goes well, I hope to clean out the garage, and perhaps my shop as well as get a number of tasks done in the yard. This week has made me optomistic about my chances for success in those endeavors. Hopefully the good feelings that I've had this week will carry over into next.

Putting on the Brakes

After careful consideration, I've decided that things are moving a little too fast with this whole NIH trial study thing. My wife and I talked it over with my father-in-law and he agreed. They seem to be in an awfully big hurry to get me into the study without a lot of data to go on. The trial information is pretty clear that it's for patients whose current hormone therapy has taken an turn for the worse and is no longer working. They told me that this trial can be taken in parallel with my current treatment regimen. It occurs to me that if the current regimen is no longer working, then what would be the point of continuing it while on the trial? And if it is still working, then how will they know that the results are due to the trial rather than my regular treatment or some combination of the two?

I'm not convinced that is the case with the only indicator being a single increase in PSA. I've talked to several people, both with and without prostate cancer, who have told me that their PSA fluctuates all over the place, that the real concern is the trend line. All subjective indicators point toward my current treatment working. I am feeling better, am able to do more, and my last bone scan showed "overall improvement". I really don't see any evidence that it is not working or that it has taken a turn. I know that they plan to run a series of tests on Monday before trying to get me into it and there is a chance they may say that now is not the time, but I think that I'm going to need some time to digest things and think about it some before agreeing to start the program.

I also have a concern that their eagerness to get me into the trial may be due to my being somewhat of an anomaly for someone with metastatic prostate cancer due to my age and my health. Perhaps they see me as someone more likely to give the trial a positive outcome?

My FIL also recommended holding off until I've had a chance to speak to my oncologist and urologist about it. I've forwarded the information to them, but haven't heard back from either of them yet. I have an appointment with the oncologist on Thursday so I'll be talking to him about it then at the latest. Yesterday I had another MRI, the one that lasts for an hour (imagine being locked in a very small closet and forced to listen to dubstep for an hour), which I had forgotten about. This one was ordered by my radiation oncologist a couple of weeks after I finished my radiation. He wanted to give it a few months for all the carry over to complete and then get this scan for comparison to the previous one so I need to see how those results compare and perhaps talk to him about this study as well.

The bottom line is that while I'm eager to do whatever it takes to get this thing under control, I'm not in a rush to jump into anything. If this trial is right for me, then I want to see hard evidence that it is necessary and have agreement from those responsible for my primary treatment. I do know from all of the doctors and some of my own research that the various treatments for this are somewhat time limited in that eventually they lose their effectiveness as the cancer figures out how to get around them and at some point I will have to switch to another treatment, however I'd like to drag the current treatment out as long as possible as long as it is still working. There's no hurry to switch to another treatment. I understand if they want to get at the cancer as early as possible for maximum effectiveness, but another week or two isn't going to make that much of a difference along those lines. I'm eager to see what the test results show and to share them with my oncologist and urologist and get their opinion. Hopefully they will show that the PSA was just an anomaly and that the current treatment is still working just fine.

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.