Thursday, November 28, 2013

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.

Wednesday, November 27, 2013

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.


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.


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.


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.

Tuesday, November 26, 2013

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, 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.


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.


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.


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 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.


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.


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...