The Transporter

Since I'm stuck here in the hospital, my radiation treatments must go on. Therefore the hospital arranged transport to get me to my treatment and back. It was comical how much overkill went into this simple endeavor. To begin with, the treatment center is literally across the street from the hospital. It takes longer to get down to the parking lot than it does to  drive over there. Since I'm capable of moving around on my own, I had assumed that the transport would involve someone taking me down in a wheel chair to a van of some kind, driving me over, then reversing the procedure to return. Instead, it was a full ambulance service that arrived with a gurney. I climbed on and they strapped me down, took me downstairs and loaded me into the ambulance. Three minutes later, we arrived across the street and they unloaded me, then wheeled me all the way into the treatment room before letting me off the stretcher. The ride reversed for the trip back to my hospital room with my having to sign my name on four pages of paperwork on the way back. I never would have thought something so simple would be made so complicated, but then again, that's probaby why insurance and medical costs are so high to cover all of the overkill.

Mind the Gap

For those who were following along and aren't up on where things have progressed since my last entry, you should probably read my wife's blog where she has done a much better job at keeping people up to date on its impact along the way. The short version is that just before the start of my 4th round of chemo at NIH, they discovered a tumor in my pelvis that was resisting treatment. They therefore suggested that we suspend the treatment immediately and get radiation on that tumor. Unfortunately, that meant my leaving the study, but we followed advice and got Cyberknife treatment on it in short order. It seems to have done the trick as I was having a fair amount of pain down there that went away after the treatment. I then resumed chemo, only now I started receiving it from my local oncologiist rather than NIH with a slightly different cocktail of drugs. This time it was a comination of carboplatin and etoposide rather than the cisplatin, etoposide and belinostat from before.

The weekend before I started my sixth and what was hopefully to be my final round of chemo, I got sick and had to go to the ER. I was having trouble keeping anything down on my stomach and was having migrane-like headaches and had also collapsed a couple of times at the house. We told my oncologist when we saw him that Monday and he ordered an MRI of my head. I went ahead with the chemo on Monday and Tuesday, and had he MRI on Tuesday. On Wednesday when I went in, the MRI results had come back showing that I had about 10 or so tumors on my brain whiich were putting pressure on the brain and causing the headaches and loss of control. He recommended stopping the chemo at that point, with only one treatment left, and start whole brain radiation immediately, so they gave me a steroid to start relieving the pressure and on that Thursday, April 17 we started the first of 14 treatments on my head. Things were going well with this treatment. My headaches became less and less and my incidents of dizziness and loss of control became farther in between. I made it through the first 7 treatments wihout a hitch, then the weekend came. 

Saturday I woke up with a slight headache and feeling achy all over. I didn't think too much about it, figuring it was just a side effect of the treatement and spent most of the day sleeping. I woke up at one point around 3PM and realized that I felt hot. It was at this point I decided to take my temperature which turned out to be almost 102. I was wearing a knit cap at the tiime and thought perhaps that it was just trapping heat so I took it off and decided to wait a while before taking my temperature again. Unfortunately it went up instead with our thermometer registering almost 103. At this point, I gave in and let me wife take me to the ER. 

I'm hesitant to go to the ER out of fear that they'll want to keep me admitted to the hospital. This was to be my 3rd trip there in a month, the first two having been two weekends prior and the one before that, each with problems keeping anything on my stomach and a certain amount of dehydration. The first time we got there later in the evening so they kept me overnight for observation and kept me hydrated. I was allowed to go home by noon the next day. The second time I was fortunately not admitted. We got there earlier in the day and the symptoms were not as severe as the first time, so they kept me for several hours and then let me go. In each of these times, it didn't seem like the staff reall paid attention to the symptoms that I described, or my answers to their questions, in some cases actuallly getting it opposite of what I told them. I understand all of the stress and pressure that they are under in the ER but they need to get this stuff correct. On my first visit, the diagnosis was Sinusiitus which I most certainly did not have. I've had Sinusitus enough in my life to know what it feels like and I had none of the symptoms that would fit that diagnosis. They never even looked up my nose.

This third time, my worst fears came to pass. With the fever added to my condition, there was much concern as to the cause of the fever, so a battery of tests were taken to check for sepsis, including blood cultures which take one to several days to come back so I was told that, even though my fever had broken, I had to stay untiil they did while they started me on precautionary antibiotics in the meantime. I was not happy to hear this. I had been hoping they could just give me something to take home with me and have me come back for a follow up.

The next day, the cultures came back positive so they took another set. My oncologist came by to explain that these were preliminary results and that over the next couple of days they would be able to narrow it down to a more specific bacteria that was causing the problem at which pointt they would be able to determine a precise course of treatment, but I would need to staty until they got to that point. So here I am, stuck in the hospital, twiddling my thumbs, feeling fine, and bored out of my mind just waiting on a blood test to come back with some answers. 

I really wish that there were some way that I could be waiting this out at home. My radiation treatments will continue. The hospital will transport me to the treatment center in time for my appointments, but that's the least of my concerns. I find hospital stays extremely uncomfortable, especially the hospital beds. They just won't adjust to any position that I find comfortable at least with my set of normal aches and pains in my lower half. Fortunately I'm no longer stuck on a permanent IV and I can get up and move around as I like but it's not the same as the freedom to do so at home. I'm hoping this doesn't drag out too long and I can get back home before the week is out.

From the Mouths of Babes.

"I hope you feel better soon." This is the first thing my 6 year old says to me every morning and has done so for most of the past year. Some mornings it's all that I can do not to burst into tears in front of her. Some days I do. "I do too." is my usual response though on particularly good days I'll say "I'm feeling much better today." Nothing breaks my heart more than this simple well wish since I know that my condition is not one that is curable, but one that is to be contained and maintained. My wife and I haven't had that discussion with her yet. I'm not sure if it's something she is even capable of understanding so I continue to give her the same answer each morning.

At this point, I don't really know if I will "feel better" or even what that means anymore. Aside from dealing with my random and transient aches and pains, I've maintained pretty well over the last year, but with this latest punch in the gut it feels like everything has changed in one way or another. Every since my stint in the hospital with the blood clots, my 4 year old, who is fairly reserved, has become more affectionate asking to snuggle and offering up unsolicited hugs, but the most glaring change since that week in the hospital has been that she walks up to me at random times and says "Daddy, I love you." Before that week in the hospital, that only happened on rare occasions.

They both know that something has changed and I'm not sure how they really feel about it, whether they are curious, scared, or otherwise I don't know, but after spending three separate weeks in the hospital within 2 months there seems to be an elephant in the room and perhaps it's time that we had a talk about it.

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.