Friday, May 10, 2013

Welcome to the Hotel California or Who Stole My Neutrophils?

OK, sing it with me, you children of the 60s and 70s…

And still those voices are calling from far away
Wake you up in the middle of the night
    just to hear them say
Welcome to the Hotel California
Such a lovely place

I’ve been awake in bed since about 3:00 (as usual), staring at the ceiling, going through all the news that’s fit to post on Facebook, and taking my turn on Words with Friends. The difference between today and yesterday is that a neutropenic fever landed me in the Emergency Room yesterday morning. I got lots of attention, lots of needle sticks and people sorting through just about every testable bodily fluid (thankfully they spared the spinal fluid!). Then, they took me to a special room for people with platinum level frequent flier cards and invited me to spend a night or two. Isn't that special?

What is neutropenic fever you might ask?  OK, let’s start with what neutropenia is.  The toxic chemical goodness that is chemotherapy is designed to kill off the fast growing cells. That would be the cancer cells. You’ve all seen the movies and likely had friends or acquaintances that sport the ultra-low maintenance hair do.  The system that produces hair is typically one of those fast-growing cells as well, as I understand it, which is why the shiny pate and smooth look over the rest of our bodies is an alarming side effect – thankfully not painful, but for better or worse, it sure gets people’s attention. In my case, it’s a patchy thing, so if I let it grow back on my head, about 15% of it will show up and I’ll end up looking like Gollum from LOTR…and at about 1/8” it starts to get uncomfortable with the beanies, so I am doing something I thought I would never be doing: shaving it back down to the nub.  I’m not good at it, so I almost always wear a hat of some sort.

One of the other predictable things that happen is that my blood chemistry goes haywire. My platelets and whole blood need to be replenished by transfusion; and by design, my white blood cell count goes down for the count as well. It got down to 0.01 per/μL. I was told that the results were delayed because they were barely detectable. Lovely, huh? Now, there are a few different kinds of white blood cells, but without going into all the differences, just think of the ones that are important to me specifically in this case are called neutrophils. Neutrophils make up a fraction of that total white count - and it varies. When the total neutrophil count goes below 0.5 per/μL, then that condition is referred to as neutropenic.

It’s expected, but during this time, I need to be a hermit and when I do go in public, I’ll be looking like a misplaced surgeon and scaring small children. The part of the 28-day chemo cycle where my numbers tank is called the ‘nadir’ for obvious reasons.  I take antibiotics and antivirals as a preventative and there are other precautions I have to observe during this time as well. For example, I can’t have fresh produce unless it’s inside the peel (bananas, oranges, etc.), no fresh cut flowers, soft-bristle toothbrush, no blade shaving, and I obviously can’t be around anyone that is sick. About this time, my immune system turns the key and starts up again and my counts start climbing. Any remnant of cancer cells should be dead and my immune system keeps me healthy.

I also have to watch for a fever of anything at 100.3 or higher. Just like any infection we have when leukemia is not in the equation, a fever is a symptom of something the body is trying to fight off, but in my case, my warrior white blood cells have been wiped out by chemical weapons, which makes even a little infection possibly devastating.  That’s a long way around to bring neutropenic fever into context and why it’s a big deal.

So, yesterday, I woke up in the wee hours of the morning as usual and checked my temperature. It was 99.3 as it had been all week.  I got up, took my meds, and read a while, waiting for the sun to come up. Ever since my first active duty command, I enjoyed having the watch or a flight that was pre-dawn. Sunrise and sunset have always been one of those things that are just cool to me.  The colors, that these cycles of the sky ‘center’ me, the sense of permanence, I don’t know, maybe it's that nautical part of me that knows where I am based on celestial movements above...or simply that I just feel good when I take the time to watch dawn or dusk, but especially dawn – it’s quieter! After a light non-dairy breakfast (can’t have dairy within 2 hours of taking one of the antibiotics…unless you’re vegan, try working that into your menu!), I was able to take a nap, but woke up with a 101.7 fever – clearly over the line. I took a shower and tried taking my temperature again, but it was still there.  Time to take a trip to the ER. *sigh*

                Last thing I remember
                     I was running for the door
                I had to find the passage back
                     to the place I was before
                “Relax,” said the night nurse (uh…man),
                     “We are programmed to receive
                You can check out any time you like,
                     but you can never leave”

Yes, The Eagles Hotel California is today’s music…too appropriate, even if it's really the last line that resonates. I check out every day, but I never leave! Being tied to a place that is full of unpleasant procedures makes you weary, yet I can be truly grateful that the people there offset every bit of pain, suffering, and annoyance. I even ran into a nurse in the ER that attended me during my last transfusion. We had matching cycling jackets, which is kind of like you seeing every other car just like yours on the road and we had a six-hour long conversation which helped me feel more normal. He was headed out to the Boston Marathon the next day. I don't need to tell you how relieved I was to see him uninjured!  Pretty telling that even in other parts of the hospital, people know me. The guy who took my blood this morning came up from the lab and who would it be, but the guy who drew it Wednesday on my last scheduled visit. For me, although it’s an errand I’d rather not make, it’s like Cheers, where everybody knows my name…and if you’re in a position that requires critical and extended care like I am, there’s no better feeling than to walk in the room and have the nurses, the phlebotomists, the health techs, and yes, even the guy who empties the trash, look up and smile and call you by name! Yeah, more often I feel like this is the Hotel California (again for the last line of the song only), but the people? Well, it's Cheers...they’re awesome.

Be well, stay strong, and much love to you all!

Post Script - My white count from the lab is back for the day: 0.8! (normal is 4.3 - 10.8 per/μL). We're making progress. Hem/Onc sez I can go home after 48 hrs with no fever or negative blood cultures). So, barring any unforeseen nastiness, that means Saturday afternoon. 

Post Post Script - Hem/Onc's boss changed the rules and won't let me out until my numbers completely recover to above that 500 mark on the total neutrophil. I am *not* a happy camper. In fact, when the doctor who shall not be named came to explain himself, if was clear he wasn't listening, just spouting medical jargon. At that point, I read him the riot act and dismissed him. It wasn't an argument I would win. The normally stoic guy winced. *sigh* I don't get riled easily and I hate coming off as a jerk (which I'm sure I did), but good grief! I hate when people don't talk to each other and honestly this whole hospitalization could have been averted had certain groups of people just communicated. Alas, we won't go there, but should said doctor come back today, we will discuss in detail so he doesn't just hear me, but actually listens and does something that shows responsibility. It's a beautiful day in the neighborhood!