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.