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.