This "lighter" dose of chemo was supposed to be easier but it has been much harder than the first half. I have more side effects that stretch out for longer and are more severe. It is hard. To say the very least. Each day post-chemo I feel more and more fatigued and some new thing flares up in my body that I have to question whether I just suck it up and deal or call the doctor and figure out a solution.
On Saturday morning I woke up feeling better than expected but in retrospect I think most of that was adrenaline from all the Hurricane Irene hype. I didn't sleep well the night before despite artificial assistance, I was restless. I knew there were things I needed "just in case" and I wanted to get out to the store early. I was up by 7 am and managed to slowly make my way to the grocery store by 8 am. There wasn't anything in particular that I needed but I did have one crazy craving . . . avocado. Earlier in the week when my parents were in town I had made my favorite Mexican salad and after polishing it off a couple of days earlier I was craving more - especially the fresh avocado. So I went to the store not necessarily for water (though I did grab a gallon) but for avocados and lettuce and tomato. Oh, and why not some hummus, milk and orange juice? For a Saturday morning at 8 am, there were a lot of people at D'Agastino's. In fact, I don't remember when I have ever seen that many people in that grocery store, let alone before noon on a weekend. As you may have heard, NYC is known as the city that doesn't sleep. What you may not realize, is that it primarily likes to sleep on weekend mornings. If you want a good brunch table Saturday or Sunday just get out there before 10 am when the only other people around are those walking their dogs, their kids or runners. But this last Saturday morning was bustling. The shelves were being restocked by employees asking if you have a water preference and people clutched odd necessities . . . it wasn't frantic but there was definitely a rush about the whole thing.
Until it came to the check out line which I ran into about half-way to the back of the store. There were two check stands open and each had a line stretching into the freezer aisles. I set my hand-held cart on the floor and responded to a couple of text messages while I waited. I watched people debate various items in the freezer case to the left and the candy and chips lined up on the wall to the right. I was fine for a while. Trying to be patient and just think about how this is part of the Irene experience. But then I felt really hot. I looked around to see if anyone else noticed me fanning my hat across my face and wiping sweat off my bald head even though no one else was hot. It was clearly me. I kicked my cart forward and tried to just wait it out. I debated calling on the mercy of the people in front of me and begging to move to the front of the line due to my special post-chemo state.
But here is the thing - I don't like admitting weakness. I wanted someone to see that I needed to help and volunteer, I didn't want to ask. So I waited in line. When there were just a couple of people ahead of me in line I squatted down on the floor and put my head down to avoid the feeling that I might pass out. I managed to put my odd collection of hurricane supplies on the conveyer belt and pay and collect my two bags without anyone asking why I was so bald and pale. I took my two bags to a bench near the exit and sat there for a few minutes to collect myself. Wanting someone to offer to help and also wanting to go unnoticed at the same time. I got the second wish and walked myself out to the curb where I hailed a cab who had to be at least a little disappointed in the address I gave him . . . . three short blocks north and one long avenue west - the meter barely had an opportunity to move beyond the base fare. I gave him a couple of extra dollars and stumbled into my building, up the elevator and into my apartment where I put the most critical items in the fridge and passed out on my bed. Chemo was catching up with me.
But Saturday wasn't all that terrible. I took naps, I watched too much news coverage of the hurricane barreling its way toward New York City, I reassured friends and family that I had everything I needed, I made my salad, I filled things with water, I moved everything away from the windows . . . by the evening I was exhausted but felt I was prepped for whatever Irene had to give since I wasn't planning on leaving my apartment for a few days anyway. At my sister's urging I gave up my comfortable bed and slept on the not so comfortable (but normally not uncomfortable) futon in my windowless alcove. My joints were sore and achy and I felt like I was getting an advanced peek into what it might feel like to be 80 but otherwise I was just tired. I put my laptop and cell phone and water bottle and flashlight all next to my bed and tried to sleep with the aid of some Advil PM.
It was a long night. Not because it was scary. Because I was uncomfortable and couldn't sleep. I tossed and turned and wondered what was happening outside. At one point I woke up thinking I had heard glass breaking. But I was in a fog of sleep and felt confused. Then I heard shouting and running in the hallway and the stairway door slamming. I was a little scared right then. I drifted in and out of sleep thinking the building was without power and thinking we were being evacuated. At some point I remember realizing the air conditioner was still on so clearly I still had power. I also remember thinking if glass had broken in my apartment then surely the wind would be louder.
And that's the odd thing about that night. I don't really remember hearing any wind. I live right on the Hudson River - about a block away actually - and my street can be a terrible wind tunnel. In the winter I refer to my corner as the secret portal to the arctic circle for the crazy arctic blast winds that blaze past. During a nor'easter it feels like the internal walls might come down as the creak and crack with the pressure. In the six years I've lived here I have seen the wind take down trees they tried to plant out front, rip down a car dealership sign off a building across the street and blow out the rotating entry to my building. The wind often creates a little whirlwind of debris next to the building's entrance. I've had winter hats blown off in the street and had to bend in half to avoid being carted off myself. What I am saying is my little corner of Manhattan is accustomed to wind gusts over 50 mph. I know what they sound like, I can almost say I know what I feel like. A year or so ago I went running one rainy Saturday and fought and fought that wind along the Hudson River and didn't realize until I was home that I had been running in a nor'easter. Like a crazy person, yes.
But Irene? I really didn't notice her. I don't know if it was because I was in the alcove or because it just skipped us somehow but either way, it was the madness of people in the building that kept waking me up, not Irene.
In the morning I was greeted by a dark sky and empty streets outside - except for one lone parking garage attendant who was on the street looking down toward the river. It was quiet and stormy but nothing like the chaos I expected. The only odd thing was that the two low buildings across the street which serve as parking garages didn't have any cars on the roof while normally they are packed. Actually, there was one 80-something Lincoln limousine on one of the roofs. The small trees in front of my building were being whipped around a bit in the wind but nothing excessive. The orange cones someone had put out across the street to warn of some hazard or another were stable.
I took the blanket off my tv. The blanket you ask? Yes, at the last minute I thought that might help if something blew in my windows. I also put a blanket over my cream couch as protection. At least I didn't do the whole window taping that I noticed others had done. I read online that it didn't do anything to help. But I think we all felt like we had to do a few nonsensical things just in case. Mine was covering my tv with a blanket for the night. I watched some hurricane coverage and then sought refuge in my cozy, comfortable bed for a few hours.
Yesterday was a long day of news and watching the sky outside my window. The wondrous, beautiful sky. One of the best things about my apartment are the south facing windows that face so much open sky. The sky was so active and beautiful with clouds moving west to east with the occasional glimpse of blue among the gray.
But more than the sky, I spent yesterday obsessed with the storm inside my body. Sunday is definitely the lowest point in the chemo cycle. My whole body ached and felt leaden. The web of skin between my thumb and index finger on each hand turned red and blotchy and felt stiff to move and a little sensitive. The blotchieness continued to spread across my palms bit by bit. My mouth lost the ability to taste and the now-familiar burned out sensation returned from last time. I was still able to eat but just didn't enjoy it. I ate my Mexican salad with lime chips but my other "meals" were two ensure shakes.
I thought bed would be a relief but despite my Advil PM, I was restless and didn't sleep well. I tossed and turned and ached and generally felt sorry for myself. And to add to my discomfort I had some fearsome abdominal pain strike in the middle of the night. It all passed slowly and painfully and left me weary and fatigued for most of today.
By around 4 pm today I finally thought maybe I should call my doctor about some of the side effects. I know, I should have thought of it earlier but I can't say I was in my normal head space. When I finally called, the doctor was gone but I spoke with the nurse practitioner who confirmed the whole burned out mouth thing is flush. The good news is they have drugs to help with that so she called in a prescription for me. And happily for me, my friend Shannon who was supposed to arrive here on Saturday but was diverted by Irene, managed to get on a plane first thing this morning and arrived this evening. We took a short outing to the pharmacy to pick up my new prescription and had dinner at the diner downstairs where I managed to eat most of a grilled cheese sandwich and most of a milkshake. I felt like I had eaten an entire Thanksgiving meal. One solid meal is just not enough. I'm really hoping this prescription kicks this nasty flush thing so I can resume eating more than nutrition shakes.