NIH Take 2

Monday we went to NIH to discuss my potential enrollment in this new trial. It really sounds like a no brainer as it consists of the standard treatment of Cisplatin and Etoposide, plus the experimental addition of Belinostat. 

It's a Stage 1 trial so there's no control group. My doctor had instructed me to ask what number I am in the study as apparently Stage 1 trials are all about establishing to correct amount to give. Those early in the study get a small dose while those later in the study get a higher dose. The trial includes 39 subjects. I was told that I'm next to last and that they've already determined the right dosage so it sounds like my participation is largely about providing additional data points.

They went over all of the possible side effects, etc, the worst of which seem to accompany the standard drugs. The Belinostat didn't sound like it added too much in the way of severe possibilities. I think that the biggest concern for me is the possibility of additional bleeding, especially a return of the hemopsis that had me hospitalized a few weeks ago. Despite all of the warnings, there really isn't any other option, with the alternative being to do nothing and let this thing win, but I'm going to do whatever it takes to extend the time that I have with my wife and kids. If side effects occur as a results fall this, it will be worth it to endure them if it gives me more time.

The date was set for me to start treatment on Monday, December 9. Because of the nature of this trial, it is an inpatient process. I will have to check into the hospital there Monday evening and stay through Thursday. In thee meantime, they wanted me to get a transfusion to build things up a little before the chemo starts tearing things down. I've been slightly anemic since all do this started but have not been low enough to merit any adjustment until now. Since they know that the chemo will affect. My blood counts, a transfusion is in order to raise them up to start.

On Tuesday I followed up with my oncologist. This was actually my regular monthly checkup and Xgeva injection, but we discussed my plan to start the trial and their request that I get a transfusion before we start on Monday. He ordered the transfusion, wished me luck, and asked me to come back to see him the week after the chemo.

They weren't able to get the transfusion scheduled until the next day, so once again, I had to stay home from work to go to a medical appointment. It was my first opportunity to wear my nre Ronwear jacket that I bought when we scheduled the port install. The jacket worked great with its slit at the top to allow access to the port. It kept me warm and comfortable throughout the 2 hour procedure for which I nearly nodded off in the last half hour.

I was finally able to go in to the office Thursday and Friday. It was good to be out of the house in a non-medical setting and to see my team in person. They're planing to move my team to another office sometime before the end of December so I went ahead and packed things up in case it takes place on a day I am out. Most of what I dug out of that desk went to either the trash or the shredder. It's amazing how much can pileup over the years unnecessarily. Much of it consisted of various documents or notes that I had kept "just in case" I would need it at some future date that never came.

As the day wound down Friday, several people stopped by to wish me luck which meant a lot to me. You spend all this time with those that you work with but never get to close to them out of concern that some HR issue may arise from getting too personal, but it's times like this when those bonds that have built over the years are really exposed. Different people on the team have stepped up of late and taken over some things that I would normally do. It's easy in that situation to both appreciate the help but also feel a little territorial and defensive at the same time. Friday I saw the genuine concern that my team has for my well being and I realized that my concerns were without merit.

In which I get an Interface installed.

Went in Friday to get my port installed. Was a little miserable going in as I wasn't allowed to take any Ibuprofen after noon the day before and wasn't allowed to eat or drink after midnight. We had eaten Thanksgiving dinner a little early, or late depending on your tradition, at 4:00pm. After that, I really didn't have anything else to drink afterwards other than a sip of water to wash down my medications. Something that I would later regret.

We arrived at the hospital at 10:00am as ordered, checked in and were sent back to the surgical waiting area. After a few minutes they called us back and gave me the gown to change into. This gown fit rather oddly, even as hospital gowns go, but also had ports on it which I was told was for the nurse to attach a warm air system that I could use to regulate my comfort in the cold pre-op area. It made it feel like I had put on some kind of open-backed spacesuit or something. Strangely enough, I wasn't that cold even without apparatus though my wife said that she was freezing. I was feeling a little drowsy to boot, guessing that I hadn't quite gotten enough sleep the night before which had consisted of waking up every two hours. This did help to distract me from the discomfort in my leg from the combination of no Ibuprofen and the general discomfort I get from laying on a gurney.

As I was drifting in and out, the nurse came in to hook me up to an IV in preparation for the surgery. Failing to get an adequate stick after two tries, something that has never happened to me before, he had to call in a backup who also failed on the first try but managed to find success on her second attempt. I was told that it was due to my lack of liquid which was made worse by the fact that I hadn't really had anything since the previous day's Thanksgiving dinner. Lesson learned. The next time they tell me no food or drink after midnight, I need to make sure I drink (water) heavily all the way up until the cutoff.

Finally hooked up, it was only a short time until they wheeled me back to the OR. At this point I don't remember much beyond hearing the anesthesiologist say that he was starting the anesthesia. At some point, I remember the surgeon saying that it went really well and then they moved me back to the gurney and up to the post-op area. They brought up an X-ray machine and took a picture to make sure everything looked right, then at some point I remember being asked if I wanted morphine or fentanyl to which I replied "morphine please" and then I slept for what was apparently a couple of hours. A short time after I awoke, I was cleared to leave after they went through the litany of post-op rules with my wife which included no heavy (15lbs+) lifting and no housework for a month and no showering for 3 days.

As I awoke in the post-op, the first thing that I noticed was that my leg was not hurting, presumably due to the lingering effects of the anesthesia and morphine. Once they got me out of bed and sat me in a chair, the familiar pain returned though to a lesser degree. The degree increased somewhat as I rode the wheelchair up to the front and got into the car. The ride home was much the same as any other ride in the car, it aggravated my sciatica to the point that it was uncomfortable being in the car. I arrived home around 4:30 and I spent the rest of the day there. Surprisingly, as soon as I got out of the car, the pain in my leg was gone and stayed that way through the evening.

Some friends came over as soon as my wife notified them we were at home. Apparently they were hovering around Frederick just waiting for the signal. In a lovely gesture, they picked up dinner on their way over and we all sat around the dinner table catching up as we had not seen them in some time. Even though I warned them of the possibility that I could nod off where I sit at any time, I was still a little embarrassed when it happened, though thankfully it was after we had finished dinner. What I remember of the evening was a good time and since my leg wasn't hurting, I was able to go to bed without difficulty at a reasonable time and actually slept through the night.

The next day, Saturday, was much the same as the previous evening in that I was feeling pretty good with minimal pain in my leg outside of any time spent in a car. Some friends came over in the morning and graciously assisted in hauling away some junk that has been taking up space in our garage and out building and, in between trips to the dump to drop them off, they grabbed the rake and blower and cleaned up my yard a little.

I felt bad playing the role of the non-working supervisor, but I was under orders to take it easy so I pointed out to them what needed to be done and then rode to the dump with them to show proof of residence. My leg was surprisingly pain free through the day and I even found new strength in climbing the steps without limping though I found that since I've been limping for a few months now, I've forgotten how to walk normal. I found my self limping anyway without any pain and unable to correct it. I've joked to my wife at times that I've started to feel lop-sided. Unsurprisingly, the moment I got into the car, my leg did start aching again and every time I got out, it stopped. I did find some relief in reclining the seat angle a little, something that I don't have the luxury of doing in the family car due to the rear facing baby seat behind me. We may have to explore some alternative child arrangements to see if we can change that.

Sunday was a little more of a "normal" day for me. I did my best to relax, but my leg ache had returned and I found it to be worse when I just sat and "relaxed" than when I got up and did something. Once again however, I was able to sleep through the night pretty well which helped to prepare me for the next day's consult with the folks at NIH about the new study.

Spectator

 My mother came flew in to help with the kids next week while I'm in the hospital. I didn't feel up for the two hour round trip in the car, so my wife took the kids to go pick up Grandma from the airport. Even though I didn't feel up for traveling in the car, I otherwise felt pretty good and decided to surprise everyone by putting up our paltry display of outdoor Christmas lights. In all it only took an hour or so, but I was pretty tired by the time I had finished, so much so that I nodded off after grabbing a quick lunch. 

I woke up to the family arriving home with Grandma and all of the chaos surrounding it. I was quickly chastised for doing all of the "work" putting up the Christmas lights as I'm still on "light duty" from my surgery a week ago and I had to explain how little "work" was actually involved. Last weekend, the day after my surgery, the surgical nurse had called to check up on how I was fairing. She was not happy to hear that I was not at home, much less resting. (I was out at the dump with friends who had graciously come over to help haul away some junk from our garage.) My wife had to explain to her that I'm not really the sit and relax type, that for me relaxing means getting up and doing something around the house. The best she could offer was that I was adhering to the 15lb lifting limit and offered her assurance that I would not overextend myself.

Sunday morning the snow started around 9:00 and kept up until about 3:00 at which time it turned to sleet. By that point we had 7" (of the promised 1"-3") accumulation. My oldest, the Snow Bunny, decided that she wanted to go outside and play in it almost as soon as it started falling. She's such an outdoor girl, after my own heart, and would play out in it all day if allowed. 

Her sister, on the other hand, is more the bookworm type and can take it or leave it when it comes to going out in the snow. I always feel sorry for the oldest going out there alone in the snow. She would prefer to have someone come and play with her but is determined enough to go outside even if it means that she must go it alone. I didn't really feel like going out in it myself, but my want for her to not be alone was stronger than my desire to stay in so I suited up and went out into the elements with her. 

There wasn't much that I could actually do to entertain her. She wanted to throw snowballs, but this was an uncooperative snow, the powdery fluffy type that won't pack together. That didn't seem to phase her however and we made futile efforts to fling snow at each other that accomplished very little of the intended goal. She ran around the yard to get away and I hobbled after her.

Eventually we came in after a brief stop and playtime with the neighbor kid. Later, as the snow piled up to around the 5" mark we went back out. With the snow adequately deep, I brought out a surprise. I had bought her a cheap little sled for Chrisrmas, but figured that there's no guarantee of any other snow this year so better to take advantage of that which we have today.

To our chagrin, the snow that was uncooperative to snowballs was equally useless for sledding. being too thick and fluffy and causing the sled to just dig in and stall. Fortunately our neighbor was out clearing the driveway with his snowblower and the inch of packed snow left in his wake was perfect for sledding. She had so much fun going up and down the driveway that the bookworm finally found it enticing enough to come out and give it a try too.

A short time later, I decided that I needed to go in. Aside from the fact that the insulating effect of my gloves was wearing off, I was starting to feel not quite right. I could tell that I'd overdone it for the day and was feeling worn out. Needless to say they were none to happy  to hear that they had to come in and could not continue sledding down the driveway unsupervised just as things had become thrilling. "This is the best day ever" quickly became "Your the worst dad".

And that's what really got to me. Not the thoughtless utterance of a 6 year old's temper tantrum, but the heavy reminder that I just can't keep up with them as I ought to. It's bad enough that I sometimes get down over the idea that I may not be around to watch my kids grow up, but to be unable to give them the time and attention that I should during the time that I have now is almost worse, like I'm being forced to be a spectator in my childrens' lives rather than a participant.

The feeling of uselessness is a hard one to overcome. The fact that spending less than an hour setting up Christmas lights which required minimal effort is now a big accomplishment for me, one that left me tired, is a severe blow to a guy who purchased an acre in the woods so that he could spend his weekends outside, all day doing yard work and DIY projects. 

To make matters even worse, I'm not allowed to lift anything over 15lbs or do any "housework" for a month as a result of my port surgery last week. After watching my neighbor clean off our driveway with his snowblower, I could only sit in the house and watch as my wife went out and shoveled the rest, cleaned off the cars, and then brought in a load of firewood for the night. She did all of this in adrdition to all the work that she normally does in the house and with the kids, perhaps even more than usual while I'm unable to help. That's supposed to be my job, and it hurts me to to have to watch her assume my job in addition to her own. 

The guy who doesn't do "sit and relax" has no other option and is hating every minute of it.

In the Mean Time,

The day after our visit to NIH, I went to my oncologist to follow up on the biopsy the results of which were supposed to be back by then. The final results of the biopsy were still not back yet, but he went ahead and had a sample from it sent to the Mayo Clinic for a second opinion. With the Thanksgiving holiday coming up, he didn't want to take any chances of thongs being slowed down by it. I told him about the pain I'd been having in my sacroiliac and he ordered an MRI to see if anything had changed since the last one. Last, he referred me to a surgeon to have a port installed. It was a foregone conclusion at this point that I'll be getting chemo it was just a matter of what kind and when. The port will make it easier as I won't have to get stuck each time they need access to a vein.

I made it into work on Thursday for my only appearance of the week. It was a pretty quiet day and I felt ok up until around 4:00pm and then the pain in my leg started getting worse. I took my pain meds and gave them time to do their work, however by 5:30 the pain wasn't any better so I went ahead and got in the car to head home. I guess that I hadn't quite waited long enough because on the way home, the pain went away which was odd considering that sitting in the car usually aggravates all of my aches and pains.

Friday I met with the surgeon for a consultation. It's a pretty routine procedure so it was basically going over the details, all the standard disclaimers and a review of my current medications to determine if there will be any issues with the anesthesia. With the following week being a holiday week, the only time available was noon on the day after Thanksgiving at the hospital. Apparently I couldn't take any Ibuprofen for 24 hours before the surgery and since that is one of the main pain killers that I'm relying on, that was going to be tough. They also gave me a bottle of antiseptic soap and instructions to take a shower the night before as well as the morning of the surgery. Last, no food or drink after midnight the night before.

Monday I woke up with my sciatica on overdrive so I worked from home, struggling to find a comfortable way of sitting all day. By afternoon it wasn't any better, despite taking the pain meds, so I emailed my pain doc about it. He emailed me back at the end of the day stating that he thought it was muscle stiffness. I agreed with that diagnosis and he offered me a prescription for a muscle relaxer.

Tuesday I had an MRI of my lower spine, or as I like to call it, the Dubstep isolation chamber. The goal was to compare to the last one to see if there have been any changes due to this new strain. I picked up my muscle relaxer prescription and then spent the rest of the day working from home.

Wednesday I visited my oncologist again went over the biopsy results which confirmed the preliminary results. I'm going to need chemotherapy. We also discussed the new NIH trial. He let us know that the proposed trial includes the "standard of care", that he would give me for this, plus an experimental agent. He suggested that I go for it saying that it's his opinion that the more you can throw at the cancer, the better.

Thursday was Thanksgiving Day and my leg was bothering me for much of the day. It was there, but not too bad until we got into the car to visit the relatives. The ride out was a bit uncomfortable, but gave me the opportunity to try out the sciatica pillows that my wife bought me. They didn't eliminate pain altogether, but did ease it a bit. I ended up nodding off on everyone a couple of times, and had to get up from the table as soon as we were finished in search of better comfort. When we were finally ready to leave, I had to endure the ride back home.

Exit, Stage Left

The day I went into the hospital I ran out of the Abiraterone that I was taking for the NIH trial I was participating in. They usually give me just enough to get me to my next appointment a month later, however due to some scheduling difficulties, I was scheduled to next visit them that Wednesday, a day after I ran out. Upon being hospitalized, I contacted the folks at NIH to see what should be done since the hospital did not have the drug in stock. They told me not to worry about it and to let them know when I was out of the hospital and thus began Part 2 of my latest saga:

Poke and Prod

Once I knew my day of release, I let the NIH folks know and they re-scheduled me for the following Monday and Tuesday. Monday was a poke and prod day in which I had blood drawn, contrast injected and ingested, and then had a CT scan and a bone scan. This had become almost routine as they've been doing this about once every 3 months since I started consulting with them. It's a tedious process that takes up an entire day start to finish and I always come home from poke and prod day feeling a little off for a day or so.

Clinic

The next day, Tuesday, was clinic day in which I meet with three of the doctors working the trial to talk about the current status of things. It seems like it's a different doctor every time, but it's a large team and they all seem to be on top of things.

After looking at my poke and prod results, and consulting with my oncologist, they decided that I needed to exit the trial. Even though the final report was not back on my biopsy, the preliminary finding was "poorly differentiated carcinoma with neuro endocrine features". Apparently what that means is that the prostate cancer has spread to my lungs, but the stuff in my lungs is a different form of prostate cancer than that which I was previously diagnosed and was being treated for. This new form is not affected by the hormone therapy provided by the Abiraterone and will likely require chemotherapy.

Basically the Abiraterone won't help with this new form and chemotherapy causes a conflict with the protocol for this trial, therefore they decided to take me out of the trial. They gave me a tapered prescription for the Prednisone that I was taking along with the Abiraterone to slowly wean me off of it.

Sidebar

I'm all to happy to be done with the Prednisone. One weekend, a couple of weeks ago, I forgot to take it for two days. The Abiraterone had to be taken an hour before any meal while the Prednisone had to be taken with a meal or on a full stomach. Some days this led to confusion if I got off my normal meal schedule. Weekends are usually up for grabs. I take the one pill as soon as I wake up, but can't eat for at least an hour. Some days I have to be up and out of the house before that hour is up, so that leaves me uncertain when I'll be eating next. That's what happened on this particular weekend. Saturday morning was chaos and by the time I got a chance to eat, it was later in the day and I completely forgot to take the Prednisone. Sunday was a similar situation and once again I forgot to take it.

Withdrawal

Around mid-day on that Sunday, I noticed that my normal aches and pains seemed to be ignoring the medication that I was taking, then I started getting new pains all over. It was like my entire body was one big muscle ache and the pain medication wasn't helping. I got sleepy and managed to fall asleep, face down being the only "comfortable" position I could find, for about an hour. I woke up feeling cold. As the day progressed, the pain became worse. I fell asleep again later in the afternoon much the same as before. When I awoke the second time, I was beginning to wonder if I should go to urgent care, or the ER, and then it occurred to me that I hadn't taken the Prednisone since Friday. I'm not sure what made me think of it, but I asked my wife to look up its side effects as at that point, I wasn't even able to perform that simple task. Sure enough, the symptoms that I was having were listed as symptoms that could occur if you suddenly stopped taking it. I was going through withdrawal. I've always heard about withdrawal being painful and unpleasant, but until you experience it first hand, descriptions really have no meaning.

Once I figured out what the problem was, I immediately took that day's dose of Prednisone and started feeling better within an hour, but it took me the better part of the next day to get back to feeling "normal." I'm sure there are probably worse forms of withdrawal than I went through that brief afternoon, but I got enough of a taste to feel empathy for anyone who has to go through it. It was a truly horrible experience that I wouldn't wish on anyone. If you are ever prescribed Prednisone, follow the instructions to the letter and keep in touch with your doctor.

A New Hope?

Before we left, the doctors at NIH said that they would look to see if there were any other trials or studies available that would apply to my current condition. A short time after we left, I got a call from a friend of my wife's who is a nurse that works with a different group at the National Cancer Institute. Shortly after we left, the doctor had left a her a note with my information stating that I may be a candidate for one of the trials that she is working on. They were going to look things over and get back to me. Perhaps my adventure with NIH isn't over just yet.

In which I go to the Hospital and Holiday plans are Cancelled.

Haven't felt like writing much of late, and there really hasn't been much to write about until recently. Suddenly, that has all changed as I approach the one year anniversary of my diagnosis. There has been a flurry of activity and people have been asking for updates, so here is Part 1 of the latest in my saga:

Monday

Monday, Nov 11 started like any other day. Things had been going pretty well aside from some sciatica/sacroiliac pains in my left leg. I went to work as usual and it was an otherwise uneventful day up until about 4:30pm. At that time, I felt a little something in my throat. When I tried to clear it, I ended up coughing a little and when I did, up came a clot of blood.

I didn't think much about it at the time as the same thing had randomly happened a couple of weeks before, just once. I had called the doctor and he didn't think it was of any concern, speculating that it could have been from a nosebleed as I am prone to them in the cooler months when the air is dry. It had happened again 3 days later. Again, just a single blob of blood came up and that was it. It hadn't happened again til that Monday afternoon.

My boss commented from his office next door that my cough "didn't sound good" to which I responded that I'd been having some sinus issues lately. A little later, as he stopped by my office on his way out to say goodbye, it happened again. I thought that I had hidden the fact that I had coughed up blood, but I found out from him later that he noticed, but decided not to say anything.

On the drive home from work, it happened a few more times. I wasn't concerned at that point because I thought it was just residual from the first cough, and that as soon as I got it all up and out of my throat, it would be over with. All this time I felt fine, I had no "symptoms" of anything other than the fact that I was coughing up blood. It was just another drive home, except that I was coughing up blood.

I arrived at home and went through the normal evening rituals, eating dinner, catching up with the girls and putting them to bed. Throughout these rituals, I continued to cough up a little blood here and there, but after the girls went to bed, I started to realize that it wasn't slowing down and actually seemed like it was increasing in frequency. I discussed with my wife whether or not I should go to the ER or just wait until morning and call my doctor for a same day sick visit. My wife answered the question by asking "If it were me would you tell me to go?" to which I answered yes. So I grabbed my coat, my iPad, iPad charger, a box of tissues, and a couple of doses of my pain medication and headed to the ER.

ER

When I arrived, the ER was mostly empty. There were only a couple of other folks there ahead of me. I checked in and took a seat in the waiting area. After about 5 minutes, a nurse called me over to check my vital signs and go over my symptoms. She offered me a mask to wear, which annoyed me a little since I wasn't contagious, but I later learned that it was for my protection not everyone else's, since one of my medications is known to weaken the immune system. I returned to the waiting area for another 5 minutes or so. The blood clots, as I had now learned is what the dark red blobs coming up out of my throat were, were coming a little more frequently, each perhaps about the size of an M&M, and I was finding it a little difficult to cough them up while wearing the mask.

They finally called me back and took me to one of the exam rooms which was less of a room and more of a stall. I was asked all of the questions previously asked as well as a complete list of the medications that I was on. They stuck an IV in me, drew some blood, and then gave me some fluids, as well as taking all of the vital measurements again. A little later a doctor came by and introduced himself, asked me the same battery of questions again and let me know that my blood work came back normal though I was a little anemic, which is normal for me these days. None of it indicated any problem. So he sent me for a CT scan. I got the scan, came back to the waiting stall, and waited, and waited.

After what seemed like an eternity, the doctor came back and said that the scan showed some spots on my lungs which he believed to be from the cancer and that I was being admitted to the hospital. The biggest concern wasn't the loss of blood, but the potential to drown in it and they wanted to make sure that did not happen.

Admission

I had been giving my wife the play by play via text message. She asked if she should get someone to watch the kids and come to the hospital with me. I told her no, there wasn't really anything she could do that couldn't wait until morning and it didn't sound like anything was going to happen to me until then. I told her that I'd rather she try to get some sleep than to roust a babysitter from their sleep. I knew that she wouldn't sleep, but I asked her to try.

A couple of hours later, they came to transport me up to my room. Patients aren't allowed to walk themselves anywhere, so they wheeled me on the bed up to the 4th floor cardiac ward. I settled into my room and waited there. By this point, it seemed that the frequency of the clots coming up was slowing down and the clots were getting bigger and darker, which seemed to be an improvement. The nurse would come in every so often to take my vital signs, but I was otherwise ignored for the rest of the night. I finally managed to fall asleep at 5:00am.

Tuesday

I woke up at 7:30am right as my wife arrived at the hospital. Oddly, I wasn't coughing up blood anymore. It seemed to have stopped just as suddenly as it started. They brought me breakfast which I happily devoured then we waited to hear from the doctors. After checking in, I had emailed my pain management doctor to let him know I was in the hospital, especially since his office is in the hospital. He came by bright an early to see how I was doing. There wasn't much to discuss at that point, but I appreciated his dropping by.

From this point forward, time became a bit of a blur as most of my stay at the hospital was just sitting around an waiting. Individual details, especially time of day, escape my memory unlike the night of my check-in. At some point later in the day, my Oncologist came by to discuss things. He was getting a pulmonologist to take a look and advise. At some point, it was mentioned that there was some pooling in my lower left lobe that was reminiscent of pneumonia, though I didn't have any symptoms of pneumonia. It was all very puzzling so they decided that I needed a bronchoscopy, which means they decided that I needed a tube snaked down into my lungs to see what was going on down there. It was scheduled for first thing Wednesday morning and I wasn't to have any food or drink after midnight.

Wednesday

Wednesday morning came and they took me down for the procedure. My then current set of aches and pains, especially the sciatica and/or inflamed sacroiliac made sitting in a reclined position extra uncomfortable and guess how they transport patients through the hospital? Yes, that's right, seated in a reclined position on a gurney. In fact, they wheel you down and leave you in a holding area for a while before and after the procedure. By this point, I hadn't had any of my pain medication since midnight. Apparently they didn't get the memo that "no food or drink after midnight" didn't include medication. The procedure itself went smoothly enough, with some local anesthetic and partial sedation, I didn't really notice. What I did remember was the waiting afterwards, flopping around on the gurney, trying to find the least uncomfortable position in which to lie or sit, hoping that any minute they would take me back upstairs where I could get my pain medication. That minute finally came and I went back to my room and then waited some more.

Later in the day, the doctors discussed, then came in to inform me that they didn't find anything during the procedure, but took some samples and sent them to the lab for analysis the results of which should come back the next day. Nothing to do until then but wait.

Thursday

The next day, mixed results were reported, but the bottom line was that the samples collected were insufficient to make any determination therefore they wanted to do a biopsy of one of the spots on my lungs, scheduled for first thing the next morning. I asked if it was possible to get my pain meds before going in for the procedure and it was at this point that I was informed they should have been offered to me before the previous procedure. It helps to ask questions.

Friday

The next morning was somewhat of a repeat of Wednesday's process only slightly less uncomfortable due to being given my medication. The biopsy consists of them sticking a long, very find needle into your lung to get a core sample. They administer a local anesthetic and tell you that all you will feel is a little pressure (which the doctor demonstrated by poking me gently with his finger). What it actually feels like is a long, very fine needle being inserted into your lung. There's no other way to describe it and it's a weird feeling. I felt a little wheezing in my right lung afterwards, but that abruptly stopped after about 5 minutes. After that, I really didn't feel anything but a slight tenderness in my chest.

Perhaps I didn't feel anything because next I was wheeled over to get a chest Xray to make sure my lung wasn't trying to collapse. After that, I was wheeled into an unused room to wait an hour for them to take another Xray to compare with the first. Fortunately, they asked if I was going to be able to handle sitting on the gurney for an hour to which I responded with an affirmative NO, so they got me an easy chair to sit in. It wasn't the most comfortable thing, but was better than sitting on that gurney. Finally the hour passed and I got my second Xray then I had to wait for the doctor to look at it and give me the all clear. I made it back to my room just in time to eat my breakfast right before they served lunch.

I was told that the biopsy results would take  2-3 days and with it being Friday, that meant it would probably be Tuesday before we had any results back. It was with this news that I started campaigning to be released. I had been there for 4 days and since that first night, had only spit up blood 4 or 5 times per day in increasingly smaller amounts, all while getting procedures done that could result in my spitting up small amounts of blood. My vital signs had stayed steady and within normal parameters the entire time I had been there and I argued that my stay in the hospital was actually exacerbating my pain.

The pains that I mostly experience these days are aggravated by staying in one position for a length of time of more than about an hour or laying on my back or in a reclined position. Often going for a walk can help to loosen things up and help the pain to dissipate. Staying in the hospital room really only gave me the option of laying in bed, reclining in bed, or sitting in a marginally comfortable recliner. They did allow me to walk up and down the hall as needed, but that didn't really seem to be enough to counteract all of the sitting. Since I couldn't administer my as needed pain medication to myself, I didn't have the flexibility to adjust the amount or schedule to my level of pain like I normally would. The hospital had to maintain a rigid medication schedule that was rather difficult to modify or go outside of. I had worked with my pain specialist to get that schedule changed during the week, but now there was concern that I was taking too much Ibuprofen which can thin the blood and cause complications with the blood clots that I was spitting up.

Finally, there was no way I was going to sit in the hospital over the weekend and until the biopsy results were back. I got agreement from my oncologist and the pulmonologist, so the hospitalist agreed to let me check out and go home. It had been one very long week of mostly nothing, but I was glad to be back at home, back with my family, and back in control of my daily routine. There was still more to work out in terms of next steps, but I was out of the hospital.

Holiday Travel

We had planned to fly to Texas the following Tuesday to spend two weeks visiting friends and family through the Thanksgiving holiday. Needless to say, we cancelled those plans. The doctors were fairly non-committal as to whether or not I couldn't go, but they recommended against it. In the end, I made the decision on my own. Without any real explanation for the Night of the Blood Clots, I didn't want to end up having it happen again while I was in Texas and getting stuck in a hospital down there where they don't know me or my history. We'll re-schedule our trip for another time, hopefully sometime in the spring. In the meantime, there's a lot more to come...

"Stupid" things to say.

The website Stupid Cancer posted the following question on Facebook: 

"What are some of the stupidest things people have said to you as a cancer patient, survivor or caregiver?"

As of this writing there were 662 comments on that post and there will likely be many more by the time you read this. I found the comments interesting, mostly a list of things that people have said to them without realizing how it is being received by the patient or survivor. 

I re-posted this to my own Facebook wall with the following commentary:

Some interesting comments on this post. 

I don't recall anyone saying anything to me that I would consider stupid, and I don't agree with all of the commenters. Some things they call "stupid" I think are perfectly legitimate things to say. Perhaps "stupid" is in the eye of the beholder?

However, this may be useful for some to avoid unintentionally offending or getting into one of those awkward silence situations.

I also notice that almost all of the respondents are women, so maybe this is more of a gender thing. I know that women tend to analyze and internalize every word said to them to a degree that men generally do not.

What I can say is that such conversations are usually as awkward for the patient as it is for the person that they are talking to and there is always a concern about giving TMI. 

I prefer that people be blunt. Ask what you want to know, don't ask what you don't want to know, and if you don't know what to say, then just say as much, don't feel obligated to say "something". 

Some patients are so tired of talking about it that they would prefer to just have a conversation on any topic but their illness and would welcome a conversation with anyone who can put the elephant outside rather than leaving it in the room.

Pain Test

It never fails. Throughout my life, whenever I've gone to see a doctor, I usually feel fine if not good, but the day after seeing the doctor tends to be misery.

This has been an interesting week. Starting with Monday, Labor Day, a national holiday in the US. I decided to try an experiment and stop taking my vicodin. My as-needed pain regmin currently consists of taking Ibuprofen every 6 hours and Vicodin every 4. I had noticed that for some time I was taking both at the same time, every 6 hours, on the same schedule and that I was not taking the Vicodin every 4 as allowed, and I wondered if it was still actuallly even needed. So I decided to stop taking it starting Monday afternoon and all the way through Thursday afternoon. 

At first it seemed to work just fine. The Ibuprofen alone seemed to be enough to keep the pain at bay. The first 48 hours went smoothly without any complications. The next 24 were not as smooth. Wednesday afternoon I had pain that persisted even after taking the Ibuprofen. It was rellatively mild, but it was pain nonetheless. It was enough that I left work early in order to beat the traffic home so that I could try to find more comfort at home to finish my work for the day. I was in a fair amount of pain by the time I got home, but was due for another dose shortly after I arrived and it seemed to bring it down to tolerable levels. Thursday, I had the pain throughout most of the morning and by mid afternoon, decided to go ahead and take the Vicodin again. It took a while, but my pain did subside once again.

I don't yet know what that means as there have been a lot of variables in play this week, any of which could have affected my pain levels. I have now been back on the Vicodin for about 36 hours and at the moment, I am up late writing this in a fair amount of pain just waiting until I can take another dose of both. Perhaps I'll try the experiment again if I get things back under control again.

Tuesday I had my monthly check in with my oncologist. There was nothing new to report on that front as everything has been going pretty well of late and my last blood test had not shown anything of concern other than my PSA had gone up a little over the previous month to 3.57. He decided to do another blood test, presumably because my PSA has been going up. When I went back to get the blood draw and my monthly Adamantium shot, as I like to call the Xgeva shot, the person who admninstered the shot gave me the most painless one that I've had so far, I barely felt it at all, but then she overshot my vein when trying to draw blood and was unable to get any. I became dizzy as a result and had to sit back for a little while before they could try again. They brought me ginger ale and chocolates, as well as a damp cloth to put on my neck, to help the situation..

I haven't had that happen in a long time. In the past, I could pretty much count on getting light headed after a blood draw every time. There have been several occasions in my life where I have passed out after blood was taken. It had been a whle since that had happened. With alll of the IVs and blood draws that I've had since I was diagnosed, I've been surprised that it hadn't happened yet so I guess that I was due. Anyway, after a few minutes rest and refreshment I was feeling OK and ready for them to try again. This time they called over the phlebotomist to do it and it went without a hitch other than my flinching when he said "1, 2, 3, now" as he stuck me. Because of the whole potential for passing out, I don't watch the procedure, ever, and I prefer not to get the play by play. Just let me know when you are finished and I can turn my head back.

With a bandage wrapped around each arm, I then headed down to NIH to get more blood drawn. That went pretty painlessly except that phlebotomy didn't have an order in the system for my blood draw and they had to track down my study nurse to get one. After that, I went home and caught up on work. A long day, but mostly painless running on Ibuprofen alone.

Wednesday was just a day at work with nothing exceptional happening other than the pain started creeping back in by the end of the day and I left early to mnimize the amout of time I had to be in the car, but after I got home, things went back closer to normal.

Thursday was another doctor day which started with my radiation oncologist's office calling and waking me up at 7:00AM to inform me that the doctor had a conflict at 3;00 and couldn't make my appointment with him. They offered me an 8:00AM slot so I took it and raced to take all of my morning medication and get ready to go. My meeting wth the radiation oncologist was uneventful. He said thta the MRI had not shown any change worth noting and asked me to wait 6 months this time before checking in with him again. Then I want home to work for a while until my next appointment for the day. Since I had already reserved 3:00PM on my calendar for my original appointment time with him, I called my accupuncturist to see if they had that time open. I had had to cancel my appointment with him for Friday becasue we were going out of town with the kids and I didn't want to skip the whole week without seeing him. Fortunately they had 3:00PM open and I went to get poked following my first Vicodin in 3 days.

After accupuncture, I went to see my pain management doc and told him everything that had happened including the Vicodin experiment. He took it as a positive sign and said to continue trying to cut back here and there where it felt appropriate. He said that he felt really good about my progress. Also, because he's part of the same hospital system as my oncologist, he had access to my blood results from Monday and reported that my latest PSA was back down to 0.99. I don't know if that's due to being on the Abiraterone for this study or if it's just normal unreliable fluctuations of PSA, but I'll take it eiher way. I've been seeing the pain doc once per month, but since things are going so well, he didn't see a need to continue that and asked me to come back in two months.

Here's where that whole thing about feeling miserable the day after seeing the doctor comes in. First, I was feelling fine on Tuesday when I saw the oncologist after having dropped the VIcodin. The next day, I had to leave work early due to pain that was ignoring the Ibuprofen. Thursday I was in some pain most of the morning, but then went ahead and took a Vicodin before going to see the pain doc and felt fine when I saw him, then Friday was a day of pain.

Friday was my oldest daughter's birthday. She turned 6, or 6 fingers as she responds to anyone who asks.  So I woke up Friday morning, took my medications and waited for the usual morning pain to subside. It took a little longer than normal to the chagrin of my new 6 year old who we had promised to take to IHop for her birthday breakfast. I finally felt good enough to go after a couple of hours so we went for breakfast. I wasn't 100% but I made it ok. We had agreed to take her down to Great Wolf Lodge for her birthday so when we got back from breakfast, we quickly packed up for the overnight trip down to Williamsburg. My lower back hurt for the entire trip down there. It wasn't excruciating, but it was just enough to be uncomfortable all the way down. 

After we got there 4 hours later, I felt a little better once we got out of the car and I had an opportunity to walk around a bit. The girls were eager to get down to the water park, so we checked in, changed clothes and went down to the water park. I had noted as we were changing that it was time that I could take another Vicodin if I wished but in all of the chaos of getting 2 adults and 3 girls ready I forgot to take it. I was OK for the first two hours in the water, but the last one was coming up on time for another dose of Ibuprofen and the pain started setting in. By the time that we got back to the room, it was bothering me pretty good. We changed, I medicated, and we went to dinner. We were halfway through our meal before I felt the medication do its job. I felt better, but not all the way. There was still some pain that was ignoriing the medication. I was sleepy and started feeling like nodding off by the time we got back to the room.

After we got everyone into bed, I attempted to do the same. I think that I had just gotten to sleep when the baby cried out. I woke up only to realize that I was feeling pain and it was too much to go back to sleep. Since we were all in the same room, my options were limited for sitting up and dealing with the pain. I had brought my heat wrap, which often helps in this situation, and the room had a microwavve that I could heat it in, but I didn't want to figure out an unfamiliar microwave in the dark and potentiallly wake everyone up with the noise, so I sat in the corner by the door, basking in the glow of my iPad and started writing this. The pain at that point was pretty strong in my lower back and thighs. I found that if I applied pressure to my thighs that it felt momentarily better, but it was little comfort. I tried laying on my back on the floor and that seemed to help some. I'm not sure how long I laid there but I started to nod off and took that as a sign to go back to bed.

The baby woke us up at her usual 4:00AM request for feeding which meant that I woke up and was suddenly aware that I was in too much pain to go back to sleep, but that it was also a couple of hours past time for me to take my medication.  So I'm up, waiting for them to do their thing. Hopefully I'll get to go back to sleep for a couple more hours. I'm not sure what's going on with this pain today. There are a lot of variables involved. I'm wondering if some of this is from exerting mysel in the water park. There are a LOT of stairs up to the top of the various slides, maybe that explains the pain in my thighs. 

Hopefully Saturday will be a better day on the pain front. We've got a full day in the water park followed by the return trip home. I hope it goes a little better than yesterday.

Breakdown

"Daddy, I hope you get better soon and aren't sick any more!" A statement that pierces  my heart.

I had a breakdown today, the first one I've had in months. As I've been feeling better overall it's been easy to leave all of the emotional baggage in the past. Being back in the daily grind has left me without much time for reflection or even cause to reflect, but I guess that I was due as today it hit me pretty hard.

I spent the better part of the day today working in the yard weeding, picking carrots, and finishing a small retaining wall project, not all that much work really. When I came in and cleaned up from doing all of that and sat down I realized that my lower back was hurting and it would be another 2 hours before I could take another round of pain medication. I laid down on the floor in an effort to get more comfortable and ended up nodding off for 20 or 30 minutes. When I awoke, I was feeling like crap. My back still hurt, I was drowsy, and just felt kind of icky overall. My wife suggested that I go to the bedroom and lay down for a while, that I had overextended myself again, and so I nodded and started shuffling off to the bedroom. Along the way, I passed my oldest two girls who were seated on the floor playing a game together. "Can. We go in the tub now?" the 5yr old asked. " not right now" I said. "I've got to go lay down for a while:"

I didn't have to look to see the disappointment on her face, nor did I even hear her response which was likely something like "Aw, we never get to go in the tub." Or "But you said we can go in the tub today!" It didn't matter, I knew how she felt. I had promised them both earlier in the day that we would get in the hot tub some time that afternoon. I had even used it to motivate them to do some work of their own in the yard, especially cleaning off their trampoline since being able to jump on it apparently wasnt sufficient motivation. They had done everything that I had asked of them and had been on fairly good behavior for the day.

Getting to get in the hot tub is a big deal to the girls. It's the closest thing tha we have to a pool and with everything we've had going on this summer, they didn't get many opportunities to go swimming. They also love the hot tub because its shallow depth gives them confidence and allows them to be a little more daring than they would feel comfortable doing in a large pool, plus, it's their special activity that they get to do with Daddy. My wife has had little occasion to get into the tub since shortly after we got it. Between surgeries, pregnancy and the baby, she's been either unable to get in or unable to gain the freedom required to be able to. Thus, the hot tub has become my thing that I do with the girls, but even those events have been few this summer as it was out of order for a couple of months and I've had few occasions where I've felt up for it on a day where both the weather and our schedule permitted it. The girls have begged on a number of occasions to get in and up until today, I've had to deny them every time, even a couple of times were I had otherwise promised that they could.

So as I walked past them into the bedroom and shut the door, feelings of guilt that I was somehow letting them down washed over me and as I laid down on the bed, I started to sob. It wasnt just about my promise to the girls that caused me to cry. As I lay there, I also my wife's comment that I keep pushing myself too hard doing things out in the yard. She's right, of course, but the problem is that the level of activity that I'm able to perform today with which I push myself too hard is but a fraction of the effort that I could have previously put in.

I am so tired of being limited in what I can do. Much like taking the motorcycle for a ride out in the country, doing DIY projects and tasks around the house is what I love doing, it's my hobby. If I were independently wealthy and didn't have to work, I would probably spend all of my time finding projects to do around the house and I doubt that I'd ever run out of things to do. It's one of the reasons that I bought this house with an acre outside of town so that I would have a place that could keep me busy as long as I had the time for it. Now I no longer have the time, and when I do, I don't have the energy or strengh to do everything that needs to be done and that frustrates me to no end. I'm tired of being unable to do the things that I need/want to do and I fear that's not going to change, that this is the best I'm going to feel even if I'm able to keep the cancer at bay for another 20 years, this is the best it's going to be. These thoughts fueled the sorrow that I already felt over disappointing the girls and I continued to sob uncontrollably. 

It didn't help that my wife left the TV on when she had been in the room earlier watching something on tha Apple TV. Now in standby mode, the screensaver had kicked in which meant a sideshow of family pictures streaming from the computer. I laid there and watched as random pictures of the girls from birth to present flowed across the screen bringing back memories of events and activities, some of witch I'm afraid are no longer possible. As pictures of my oldest as a baby scrolled past, I noticed how much my youngest, now 9 months old, resembles her older sister at the same age and I wonder if I will get to make similar memories with her as I did with her sister as there was so much more that I was able to do then.

At some point, I realized that I wasn't going to be going to sleep and somehow my pain was less noticible. Maybe just laying down for a while was all that was needed, so I got up, put on my swimsuit and directed the girls to do the same. They, of course, noticed that I'd been crying and asked me what was wrong. Trying to spit out an answer only made me start crying again at which point my 5 year old came over to console me and said those words "Daddy, I hope you get better soon and aren't sick any more."

I don't have the heart to tell her that there won't be a time when I'm "not sick any more". I don't know if she'll be able to comprehend that fact or if I even want her to know yet, but it pains me every time I hear her say it. How do I tell her that in one way or another, I will be sick for the rest of my life, that there won't be a time when I'm fully recovered and cancer free unless some miracle cure is just around the corner? It's amazing how a simple statement of comfort and concern can have both it's intended effect and can tear at my heart at the same time.

Afterwards I did take the girls out to play in the hot tub for the short time that was left in the day. They were happy and so was I and even though I was out there past the time that I was due to take pain medication, I was pain free the whole time we were in the tub. Lately I know when it's time without even looking at the clock as I can feel the meds wearing off, but somehow while spending that time with my girls I didn't even notice. I'm glad that I was able to keep my promise.

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.

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.

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.