That includes 6 cycles of chemo and 2 trips to the ICU. Do you understand what that means in terms of how many drugs have been processed by my body? I have no idea how my organs still function normally...this is marvelous. The worst damage that's been done is at the bone level and I know this because the last two days at the hospital this time were absolutely nasty. I did not sleep at all for about 48 hours despite being on pain killers AND 50 mg (double the dose since the previous post) of IV Benadryl at the same time...just for context, if that combination was given to a normal person, there's no chance they would not be almost unconscious. Late afternoon on Wednesday, this throbbing pain in my back attacked me almost out of nowhere as I was sitting in bed and the pressure was so intense, I had to hold my breath in hopes that it would only last for a few seconds. Negative. The throbbing continued almost at the same pace as my heartbeat and I found myself holding my breath a lot. This has never happened to me before. I was so entirely confused as to why the Neupogen shots were causing pain of this degree and tried to describe this to the nurse. The first pain killer she offered me was Diloted and my reaction was, ok, maybe let's calm a little bit. I have never even had Morphine before, so maybe we should give this a few minutes and then reassess whether I need something that strong. A few minutes later, I said to myself, why not? My head was throbbing, my back was throbbing, my ribs were throbbing. I got up to walk to the bathroom and my first thought was, if I by any chance I fall or run into something right now, my entire skeleton would disintegrate like a house of cards and my bones will fall into a pile on the floor. Every 5 minutes or so, I imagined my body blowing up from the pressure inside my bones, because it really felt like a bomb was ticking in my core. I tried to convey this feeling to my nurse and she in turn tried to explain this to my doctor and the son of a bitch said: we can't give her Diloted...just start with Oxycodone, because if it's something more serious than just bone pain caused by the Neupogen shots, I don't want it masked. Should have kept my mouth shut and said nothing more and just enjoyed the damn Diloted while I had the chance, because the oxy definitely did not work. They gave me another oxy, but still, nothing. I spent that entire night staring at the ceiling, holding my breath for long periods of time while the pain slowly tried to drive me to insanity. The nurse couldn't have given me another pill for at least another 3 hours, because I already had two in my system. When she came in at 5am to draw blood for the day, I told her I never slept. She offered me Ambien, but I refused it, because I knew it wouldn't work. Ambien is like a sugar pill to me now. She then told me a story about a patient, also young, who was once given two pain killers, followed by 50 mg of IV Benadryl, followed by Fennergen, and finally high-dose Ambien and he still couldn't fall asleep. Hearing this was more comforting than any pill she could have ever given me. I suddenly realized, out of all the rooms on that floor, at least half of the patients must also be lying awake in pain. Not only does the physical pain take a toll on your body, but the drugs you take in an attempt to get rid of it cause the most frustrating drowsiness, because falling asleep always fails, so you get stuck in this groggy, in-between stage that you just keep adding to because every day you take more and more drugs, but get less and less sleep. THEN, some nurses have the nerve to walk into your room mid-afternoon as they see you laying there with your eyes closed, trying to desperately squeeze in a nap and say, "WOW you slept the whole day?!" If only I had a gun for moments like these, there would not be even the slightest hesitation.
That morning, I prepared to beg the doctor to let me go home, because I knew I could not stay there another day and lay awake day and night, hoping for the pain to go away. The nurse came in and told me that my neutrophil count (ANC) increased from 0.3 to 1.6 (x10^3) and I almost jumped out of my bed. The condition for them to let you go home is that your ANC count has to be greater than 1.0. This means, my body produced thousands of cells overnight and believe me when I say I felt it as each one of these bastards divided and released into my bloodstream. Worth the pain? That is the biggest question of my life - the bane of my existence. The only thing I was afraid of now was that the doctor might say they need to monitor me due to the continued throbbing, but THANK GOD, he came in and said this instead: "I think you're just having really bad bone pain, take some Tylenol and I'll sign your discharge papers." I could not have heard words sweeter than these. I wanted to give him a hug. Bipolar? Yes.
I'm sure everyone has experienced some sort of pain in combination with sleepless nights in their lives, but it takes a skilled thinker and an almost unreal ability to remain calm to get through a night like that one. That is exactly what I have. I don't understand how I don't shed one tear and withstand enormous amounts of physical and mental torture and still manage to be one of the most emotionally stable people I know. How is it possible to be this wise? You couldn't train someone to be a better cancer patient than me. It's as if my brain and body were designed for this job. It freaks me out every day that even after the worst of the worst moments, the kind of stuff that turns people into psychologically unstable and psychotic, I can bounce back almost immediately and still even communicate effectively and relate to people. They mostly have NO idea what kind of brain power, forget physical abilities, it takes to undo the damage I incur every day. Sometimes I do wonder though whether I keep throwing my problems into a ditch I have somewhere inside and one day it'll all come out and destroy me. I doubt it. I think if that were to happen, it would have by now...or maybe I just jinxed myself for the next step? I will say this though, people say some dumb things to me. At the worst times, too. For example, today at the doctors office, the medical assistant told me to be careful and avoid sick people so that I don't get sick. I had to stop myself from bursting out in laughter, because hearing that for me is like someone telling you, OHHH, make sure you eat, or else you'll starve. REALLY? You don't think I know this after two years of being in this same glorious position...This is by far the most annoying thing you can ever say to me. I hate when people give me advice in general. I don't need it. I already know everything there is to know about life. I have yet to make one wrong decision since 12/16/09. Slightly unhealthy, but true. Another example of grossly obvious statement made to me: the most important thing right now is your health. I could not manage a response for that one.
Why so conceited? There is no other way to be able to the stand the anticipation of what is to come next. I need to fill my head with as much confidence as a douchebag before I go to Hopkins so that when I walk into the BMT ward, they know my only option is success.
Being home: When I walked into my house, I could barely climb the steps at the front. This is always the biggest test of how much strength I have lost and this time, I felt like I lost almost everything. My head was spinning and my biggest fear was I wouldn't be able to fall asleep, but somehow I did. I slept for 8+ hours that night and woke up with no pain. I've been home for only 4 days, but the progress I have already made in terms of being able to eat and gaining my strength back is enormous. I can't even explain how this magic happens every time, but all my bodily functions start returning to a normal rhythm when I come home. To think that I have almost 4 weeks off before the transplant begins...this is going to be the best vacation ever.
Thanksgiving Day Dinner: two transfusions of red blood cells. Get in my bellayyyyyy.
No comments:
Post a Comment