Last Thursday we moved down to New Haven into the hotel suite. It's pretty tight quarters but has a kitchen with all the amenities, a living area, and a super comfortable queen size bed. The night before I was literally on hands and knees trying to pack a suitcase with 15 days worth of things that I would need but so far somehow I didn't seem to miss anything. My mom had bought me a huge pill box with openings for morning, evening and bedtime for each day and counted out all the antibiotics and anti-nausea pills that I would need to be taking. The antibiotics are like horse pills and were especially a bear to get down due to my incredibly uncomfortable mouth. By Thursday I had no taste buds and my entire tongue and mouth was coated in a white film and it felt like I had a tube sock stuck in there. Never mind the nausea and gag reflexes kicking in when trying to take them, but I'd gotten them all down, knowing that if I couldn't get them down that I would have to be admitted as an inpatient and I was trying to avoid that at all costs.
Thursday's trip into the clinic went fine. Then it was the same drill on Friday. I got my blood work done then received a Neupogen shot to start boosting my white blood cells and two bags of fluids to keep me hydrated and keep my blood pressure up. On Friday we were there for several hours but it was beautiful out and Craig and I played cards out in the meditation garden until my IV pump ran out of battery and we had to head back in. Afterward I was feeling pretty strong. We went on a drive through New Haven, rented some movies for the week, and went to the beach where we laid out on a blanket and read in the evening sun. Back at the hotel my appetite was feeling better than it had in days so I had some Annie's mac and cheese with spinach and chicken sausage. We curled up to watch a movie and I was feeling "good" (a relative term, of course).
Then the clock struck midnight and all hell broke lose. I could literally feel my upper and lower intestines throbbing in pain and it was bathroom trip after bathroom trip doubled over with horrible diarrhea. They told me the Melaphan chemo drug would cause this but I never imagined it to be that bad. I was up all night transferring from fetal position on the bed to hunched on the toilet. By 8am when we had to head to the clinic I was incredibly weak, still in a lot of pain, and unaware if things were going to act up again. Every movement was so cautious, Craig comparing me to a 97-year-old woman and that's really what I felt like.
We rolled in and they tried to put me in one of the chemo pods but I told them that I needed a room with my own bathroom and explained the night. I was sent t0 the far end of the hall. Being a Saturday it was bare bones staff and Craig and I sat in there for nearly 45 minutes before anyone came to get me started, check on me or put a pillowcase on the pillow. Finally our call bell was answered and we came to realize that this would just be the day of hellish care. Note to self: try not to feel awful on the weekend shifts. When the nurse finally came I told her that I was having wicked back and stomach pain and about the night 'o diarrhea. Because of that she called the on-call fellow - also not much help. Then luckily Dr. Cooper swept in.
At this point I was downright weapy, all teary-eyed and choked up because I just felt so, so shitty. I told him that I'm usually really tough and I was just feeling awful. I couldn't help the hot tears from streaming down my face and had to keep wiping them away with a tissue. I was running a temp of 100.1 and because it was still so early in the morning he said it was safe to assume that it would only rise throughout the day and made the decision to admit me and get me on IV antibiotics. Though I certainly did not want to be back in the hospital again, I knew it was the best, and the safest thing to bring out the heavy antibiotic guns and to be monitored at all times.
So the preparation for admission ensued. While in the clinic they took blood cultures to test for any bacterial infections. Most could be pulled from my port but some have to come from a peripheral vein in my arm in case the infection was in my port itself. This took two nurses on their knees, three vein pokes and an arm that was about to explode they tied the tunicate so tight and had to leave it on so long because my vein was only dribbling. I was just so tired that it was all I could do to breathe deeply as my eyes continued to well.
I was then admitted to the solid tumors floor as that was the first bed to open up. There I received two units of red blood cells and four units of platelets. My nurse was nothing short of a nightmare. I've had wonderful, wonderful nurses, mediocre and some doozies but never one like this. I was so out of it, but luckily coherent and smart enough to know to advocate for myself. It was one thing after another after another that just wasn't going right with her. Dr. Cooper came up to see me and when I got all teary and told him that she wouldn't hook me up to fluids flippantly saying that I didn't need them and that I had to convince her to recheck the orders to see that in fact I do need Benadryl before platelets. Hearing all of this he stood up chest puffed out like an ape and he ripped his paper gown off like Clark Kent revealing his Superman undersuit and went into the hall to find her. I'm pretty sure he reamed her a new one because when she came back later she asked me: "What was that doctor's name?" The next morning he made sure that I was transferred to the 11th floor which is devoted to blood cancers and I've been here ever since.
I really wish that I was up to writing over this past week but I just could not get the strength. And anytime I got close to it someone would come in to put me through something. It's not easy to keep a creative flow going here. But I guess it's also just a testament to how awful, awful I was feeling. Looking back on Sunday through today it's all a big blur. Maybe it's better to remember it that way. It's been a blur of all different antibiotics throughout the day and night by mouth and by drip, daily Neupogen shots that burn like hell, blood transfusions, magnesium and potassium transfusions. A blur of constant vitals checks, blood draws, chest x-rays, blood cultures, physical exams and the dreary eyed desire for an uninterrupted night's sleep. A physical blur of throat sore pain, vomiting, diarrhea, aches, and extreme weakness.
The worst of all has been the fevers which have continued since I was admitted on Saturday. Anywhere from 100.1 up to 103.2, never going below 99. Each would start with violent, shaking, teeth chattering chills. Despite wrapping myself in several blankets I could not warm up and could not stop shaking. They would give me Tylenol and all I could do was curl up in bed and ride out the chills until the fever broke and I was soaked in sweat. The hunt has been for the cause of the fevers to make sure I don't have any type of bacterial or viral infection. This is why they've been drawing so many blood cultures and I also have had to endure swabs up every orifice. So far, everything continues to come back negative.
I've never been bored. Not for a second. In fact I wish that I had more time to read or sleep or catch up on miscellaneous projects but again the energy or gusto was completely zapped. I've had either my parents or Craig here for a few hours each day with Craig coming for a couple hours after work each evening before he goes back to sleep at the hotel and commute the hour to work. We've watched movies together and my parents even brought bright garden streamers to decorate the room. But often it has been them watching me half-sleep.
All started to turn around on Tuesday and has been doing so turner for the brighter with each day. Until I come out of neutropenia and I stop having these fevers they will keep me here. What's helpful to keep in mind is that I am here to heal, not here to receive more toxic drugs. This means that when I do get released it'll be just to continue along the recovery path. This time once I start to feel close to myself again it won't mean that it's time for more chemo. It'll mean that I can keep the healing going.