Wednesday, December 4, 2013

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.

Tuesday, December 3, 2013


 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.