Monday, August 29, 2011

Chemo #6 and Irene

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.

Thursday, August 18, 2011

chemo #5

Wow, I can't believe I let so much time slip by without an update. I think the last few weeks have been the hardest ones so far which has made it difficult to respond to much of anything that isn't absolutely necessary.
To take a step back to the end of July, as you know I had a celebratory half-way trip planned to New England. I managed to fly up to Boston but I picked up some sort of cold a day or so beforehand that ballooned into an ear infection which complicated my celebratory mood. Not to pile on or anything but I also ended up with a freakishly sized blister on the bottom of my foot for absolutely no apparent reason (was wearing normal shoes and somehow got it walking home from work). My friends put up with my whining and complaining and we managed to have a great weekend anyway. We had an excellent dinner in Boston at a place called Ten Tables and Friday morning we drove to Portland, Maine where we wandered around (I hobbled) then went sailing. It wasn't exactly the most idea weather for sailing since it was gray and cloudy and rain was threatening and 60 degrees feels a lot colder than it should when it dips that low in July but I was happy to be out of the NYC heat catching up with friends. After our chilly sailing we were off in search of a lobster dinner. And we found it at The Lobster Shack located on a bluff over the ocean with the obligatory lighthouse close by. The lobster was buttery and delicious and I was able to eat it without any trouble despite some growing mouth sores . . . one of my newer side effects. That evening we drove to Waterville Valley area in New Hampshire in the pouring rain (at least it didn't rain on us while we were sailing!) and stopped for some ice cream along the way. Ice cream was on our agenda each night and I discovered New England knows how to make excellent ice cream! The next morning we were greeted with a sunny sky and set out on our hike. I won't lie - it was a struggle for me. I had to walk more slowly and stop more often than I would ever care to admit but it still felt good to be out in nature with friends. I spent the afternoon napping while my friends went mountain biking and was awake and alert enough (after I was told to drink some gatorade) to lose a game of miniature golf and enjoy some lobster mac and cheese for dinner. Unfortuantely my ear infection worsened over night and I decided I couldn't get back on a plane again so I booked a train as we drove back to Boston and left one night early.
When I went to the doctor it was confirmed that I did indeed have an ear infection and I was promptly put on antibiotics and I spent a day worrying about whether or not I would be able to get chemo the following day. I was also worried about flying home to Salt Lake the following week with an ear infection - my primary care doctor seemed pessimistic about my bodies ability to heal on a normal time table. When I met with my oncologist on August 3rd, I was expecting to be starting on the new drug taxol and continue on a two-week cycle. Unfortunately, I learned that there was a nationwide shortage of taxol so I would be starting a different, but similar, drug called taxotere every three weeks. I was devastated. Those first four treatments were difficult and part of the difficulty was scheduling volunteers to help me out. I appreciate everyone who has helped or even just volunteered to help but it is still so hard to organize. I had the last four treatments all planned out with family or friends scheduled to stay with me during the most difficult days. I was really looking forward to those carefully planned visits and not having to organize and schedule anymore. Besides, I have been zeroed in on everything being over by mid-September. Mentally, I was locked into it. Changing to a three-week cycle means I won't be finished until the first week of October. Sure, it isn't that much longer and my doctor promised me this is a lighter drug and it would be easier and I would have more time to recover between treatments . . . but I was upset. I was also worried about my longer term plans. I know I still have surgery 4 weeks after my last treatment and 6 weeks of radiation after that. I finally asked my doctor if there was time for everything before my long-planned trip to Patagonia on December 23rd.
She said there was not.
For the first time since meeting my oncologist, I broke down in front of her. Actually, I think I have only truly cried throughout this whole long cancer process three or four times. I told her that I just couldn't handle canceling this one last thing I have been counting on for so long. I explained that I have cancelled pretty much everything in my life and coped with that as best as I could but this was the one thing I just couldn't cancel. It has been planned for almost a year. We started booking reservations in January and my flight was booked the day before the lump was found. I needed this trip mentally, emotionally, physically. I just need to go. I asked her to explain to the student who joined us for this consultation that I do not cry and she told him I am always very strong and I pulled myself together. She said she has deferred radiation for a brief period in the past and to not cancel my plans. I will discuss it with her in more detail next week now that I've had a chance to process everything. I do not believe I will be taking a significant risk by delaying radiation but will continue to research it and for the time being, plan on the trip because my mental and emotional health are just as important as my physical.
My lighter, easier chemo didn't start off so light and easy. I had a substitute nurse. She is the only nurse I have not liked. She was flustered and distracted by having multiple patients and the fact that I didn't have a port and needed an IV. She normally works on the in-patient cancer ward and is definitely out of practice with needles because she poked me no fewer than five times before giving up and asking another nurse to try. The other nurse successfully got an IV strated on the first try. The nurse also ignored me the whole time I was getting music therapy while she waited for my blood work results which means once she finally got the results she had to get the IV going and give me saline and all of that just added more and more time. Instead of having a short couple of hours I was there for five. Tying with my longest treatment. As usual, I had good company and I am now comfortable enough with music therapy I sing without caring how it sounds - even with an ear infection.
On the afternoon of Friday, August 5th, both of my brothers arrived from Chicago and DC along with my nearly 1-year old niece. I slept a lot and spent the in-between times talking with my brothers or trying to play with my busy little niece. They made me smoothies and fetched me whatever I needed and went for a walk with me. I really enjoyed their company. After they went home on Sunday I continued to sleep and expected to wake up feeling normal on Monday. I didn't. I was still more tired than I could even comprehend. I was leaving for Salt Lake the next day and was still so completely wiped out I felt leaden. It took me all day to do a little laundry (which yes, my brothers offered to do and I stubbornly refused anticipating I would feel better on Monday) and pack. I worried about getting on a plane the next day.
Tuesday morning I left my apartment for the first time since Friday evening's walk to get in a car to the airport. I was already exhausted. Every step felt exaggerated in its difficulty. I checked my bag and kept my carry-on uncharacteristically light. I crossed my fingers that this would be the flight I get upgraded. No such luck. I had an emergency exit seat that was roomy and discovered that despite my fatigue and lack of appetite I could read again. During those first four treatments I hated my lack of concentration. I couldn't read or even follow a tv show or movie that was complex in any way. But for some reason, as tired as my body felt, I was able to read my whole flight to Salt Lake. Actually, the biggest distraction was a family sitting behind me who I managed to drown out with my headphones but the kicking of my seat and the hitting (yes, hitting!) in the head was not easily ignored. It was a long flight.

I discovered that night that it wasn't just a lack of appetite I was experiencing, I could no longer taste anything. My entire mouth felt like the taste buds had been burned off. I couldn't tell the difference in how my mouth felt before or after brushing my teeth. I learned that my appetite is directly related to my ability to taste food. I could eat cream of wheat or grilled cheese but anything where I anticipated much flavor did not work. I thought a quesedilla from Cafe Rio would help. I ended up just drinking the first of many Ensure shakes my dad had stocked the fridge with. For some reason ice cream still tasted good so I made sure to have a milkshake a day along with my toast or egg or cream of wheat or grilled cheese. I think that is what I ate primarily throughout the week. I grew stronger each day so friends who saw me when I first arrived, rest assured I looked a lot better by the time I left. I spent one evening catching up with friends far later than I should have, I managed to enjoy lunch with the judge for whom I clerked and my former co-clerk and even had a private tour of a chocolate shop owned by the brother of a friend while we caught up over frozen hot chocolate (yay, it tasted good!). I spent a beautiful day with my sister and another friend at the Snowbird Cliff Spa lounging by the pool, and then enjoying the solarium, the sauna and steam room. I had developed a rash that morning and grew more and more concerned about it as the day went along so I called my doctor and she told me to take a Benadryl. This definitely accelerated my fatigue for the day but I insisted we ride the tram to the top of the mountain after lunch because I needed the view. On the way back down I utilized the only chair on the tram and struggled to keep my eyes open on the car ride back down the mountain. I took another drive up to another favorite ski resort on Saturday in a friend's convertible. We sat on a chair lift and caught up until my energy started fading - again, I blamed the Benadryl. I arrived home to a visit from two aunts and enjoyed a relaxing afternoon of conversation with bits of dozing in between. The short naps were actually enough to get me through an evening I had been looking forward to for a long time - a John Butler Trio concert at Kingsbury Hall. Kingsbury Hall is a small theater venue on the campus of the University of Utah and was the absolute perfect place for me to see a concert. We had orchestra seats almost dead center with the greatest accoustics. The music energized me. It made me feel like I was normal and not sick. I loved it.

On Sunday I spent more time with my sister and met up with another friend to watch the Tour of Utah (a bike race similar to the Tour de France) and that evening we had a bbq with my dad's extended family where I was greeted with pink pom poms waving. My uncle has been telling me his is waving his pom poms for me and I discovered these weren't just pom poms of the figurative variety. I didn't have high hopes for enjoying the actual meal but when I tested my mouth with some pita chips and hummus I discovered I could actually taste it! I ended up eating more that night than I probably ate all week put together! Including two servings of homemade vanilla ice cream at the end. I spent Monday with my sister and Tuesday it was already time to fly home.
But this time I wasn't flying alone! My parents joined me on the flight and due to a bit of good fortune and the kindness of strangers willing to swap seats, we all managed to sit together in the exit row for the flight. They were originally scheduled to be here for my treatment but since that is deferred to next week, tomorrow we are heading to DC for a couple of days to see my brother before my dad flies home. My mom is staying through next Thursday.
It was so good to go home and see family and friends. I really wanted to have time to see everyone and I desperately wanted to have a big bbq and invite everyone but I am learning to accept my own limitations and take things one step at a time. I'm also learning I am not capable of filling every minute of every day the way I normally do. I keep telling myself that I can and will do that again very soon. For now, I need to learn a little patience and how to slow down and not have everything all at once. It will all still be there when this is over.
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