Time Stands Still

The concept of time when it comes to being in the hospital is a little complicated. I've been here for about 9 days now, but if I didn't have a calender, I would have no idea how much time I've actually spent here. The days of the week don't matter: every day is the same. Holidays don't matter...Thanksgiving, Xmas, etc. to me are just like any other day. To be honest, the period starting from the moment I step into this building to the moment I sign the discharge papers is just a big chunk of stationery time. This concept only applies to me personally, because the rest of the world does not stop with my clock or me. They continue forward. Let's say I'm here for 21 days this month, when I get out, I might as well have taken those 21 days and thrown them into a black hole. There's no making up for lost time, because the monotony exists only in my own head. When I get out, all I can hope for is to fit right back into that continuum that everyone else belongs to, even if it's just during a break from these four walls. Right now, life stands completely still for me, as if someone pressed pause on just my story, creating a sense of urgency to press play again and possibly fast forward so that I can catch up and go live again. I can't expect everyone else to rewind or also pause...so I guess all I can ask for now is the ability to just play again. 


Just to clarify what a standard day consists of on the Oncology floor, I'm going to break it down for you hour by hour. You would think I would start at the beginning of the day, namely the morning, but the definition of a beginning and ending to a day is very unclear here and you'll see why: 


12:00 am: I go back and forth on deciding which drug to take to sleep tonight. My absolute favorite is IV Benadryl - this is hands down the best kept secret in hospitals...I ask for 25 mg. It's the perfect little number and just enough to feel the initial and immediate high as it's injected directly into a central vein through my catheter and then the slow but effective drowsiness that follows. It's the same exact spinning feeling that you get from alcohol sometimes. I look forward to this all day and I plan out this moment very carefully so that I have already brushed my teeth and turned everything off to be ready to make the call to the night nurse and ask for this. It's pretty scary to have that freedom of being able to ask for any drug I want and have it injected into my bloodstream within minutes. Too bad I know better than to abuse this luxury...


1:00 am: I already have to pee. I'm usually on at least one bag of IV fluids and the pressure you feel from the sudden influx of fluids in your bladder cannot be ignored even under the influence of something as strong as ambien or IV Bena. 


2:15 am: I wake up covered in sweat. Even my bare head is sweating. I throw the covers off in an attempt to cool down and exactly two minutes later, I'm cold again. Then I realize have to pee again. I try to ignore it for about 5 minutes or so, but that's about as long as I can hold it. After I go, I come back to bed and realize my drowsiness is already wearing off and I struggle to fall asleep again. 


4:00 am: The tech for the night comes in and takes my vital signs. They also ask me to get up and out of bed to take my weight. Why at this hour? Who knows...I want to throw something at the little blood pressure machine that makes amazingly loud noises, but there's nothing close-by. I might as well go to the bathroom once more before collapsing back into bed. 


5:00 am: Ahhh the lights are so bright. Who the hell is in my room? Oh yeah, it's 5am and that means they need to draw blood and send it down to the lab so that the results are back in time before the doctors get here. I hope the nurse does this fast and gets out, because the longer she takes to do this, the less chances I have of being able to fall back asleep and more likely that I'll make myself get up and go to the bathroom one more time. 


6:00 am: The cleaning crew. They take out the trash, this is pretty loud. Sometimes I can ignore this, sometimes I can't. 


7:00 am: The new nurse for the day comes in and announces her name. Completely unnecessary, but I probably would've woken up to pee by now anyways, so that's exactly what I do. 


8:30 am: The food delivery girl comes in and gives me breakfast. I won't eat this until noon, but can't be mad at her for that. 


9:00 am: The doctor that's rounding for the day comes in and tells me how my blood counts are. Even their visits are usually pointless, because I could just ask for my blood report from the nurse later in the day and they almost never tell me anything that I don't already know. Every conversation with them ends with the same conclusion: we don't know when you can go home, just be patient and wait. The only time I do like seeing the doctor is when it's the new, cute one. He's the youngest one out of all of them and to my benefit, he comes in very often :)


9:00 am - 12:00 pm: This is usually when I get the best sleep depending on whether my nurse leaves me alone or not. Most of them will come in around 9ish and leave my meds for the morning on the table and tell me to eat and take them and then don't return until about noon. These 3 hours are crucial in getting majority of my rest for the day. 


12:00 pm - 5:00 pm - I eat twice during this time, take my medicines for the day, entertain visitors, and usually walk around on the floor here. Probably pee about 10-12 times depending on the rate at which the fluids are coming in. 


6:00 pm - the nurse comes in to give me the neupogen shot, the purpose for which is to make my bone marrow produce healthy cells as fast as possible following chemo. Normally, when you get a shot, you feel the initial sting and then pretty quickly the solution soaks into your skin and you're done. Not neupogen. This is almost a gel-like liquid that burns a LOT when injected into your skin. It also leaves nasty bruises all over my stomach. I have no idea if those will ever go away. Also, depending on how good the nurse's technique is, the shot burns more or less. I usually ask them to do it as fast as possible, because the slower the injection, the longer the stinging lasts. I also ask them to make sure that the have had the shot out for a while so that it's at room temperature, because I have had cold neupogen before and holy good God, the pain is pretty nasty. This is given every day starting day 5 of each cycle and produces pretty intense side effects - pain in all of my joints, lower back and limbs. I can almost feel something being stimulated in my bones, a weird buzz, especially when I walk while being on this drug. The bone pain is so severe at times that it keeps me up at night and almost tempts me to ask for pain killers. Thankfully so far in this round, I have not used any and dealt with the pain by just trying to ignore it. I did feel like my knees were going to collapse when I was walking yesterday, but I think that's mainly from the two opposing forces at work right now: the chemotherapy which is killing the cells in my bone marrow and this neupogen, which is trying to make them grow back at an unnaturally high rate. Being pushed into overdrive like this has long term consequences for your bones which I'm afraid to even look into. I'll just have to deal with those as they come...the first concern is to make it through the transplant as everything else becomes a moot point without the success of that. So I take these shots like a champ. I also take the pain they bring like a champ, because that's basically a part of my genetic code. I'm pretty sure I have it written in my DNA - the ability to withstand intense amounts of pain and not turn into a crazy person going through multiple rounds of the messy and ugly phenomenon they call cancer treatment. More to come on that when I write about my next bone marrow biopsy HA. 


7:00 pm - 12:00 am - I get the nightly meds and the nurse shift changes. I usually try to squeeze in a walk in here to try to be as tired as possible so that I can be exhausted by the time I try to sleep and succeed at that. Sometimes they have additional shots for me. For example, today they gave me a Zoladex shot which shuts down my ovaries in order to protect them from the harms of chemo. There's mixed evidence on how well it works, but it definitely stops ovulation. It's basically induces temporary menopause. The needle for this one is humongous. It feels like they're ripping through your stomach and usually bleeds for a while after. At least it's only once a month. 


There you have it - a day in the life or as I would say, every day of my life for now. I always wonder why the receiving end of medical treatment is represented by the word patient...what a play on words. Whoever coined this term got it just right, unfortunately. Mistake are made every day in the medical field, and the patients are always the ones that lose and suffer as a result and since we are the diseased ones that need help in the first place, of course we are the ones who have to be "patient". That inherently makes sense and adds the much needed insult to injury.