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.


Emily said...

I was so glad to read this update and hear about how you're doing! I've missed your words. I know I've said it before and I hope it doesn't sound trite, but you are such an inspiration. I'm glad that you got to spend quality time with family and friends and I'll keep my fingers crossed about Patagonia.

Tracy said...

I, too, was very glad to read an update and hear about how you have fared up to now. Alyssa you amaze me in the strength (physical and mental) you seem to posses throughout this whole path you are now traveling. Much more strength than I think I would would be able to maintain. Much, much love and strength comes your way from the west coast! I will also keep my fingers crossed about Patagonia!

Anonymous said...

Miss hearing your updates. Praying all is well!

Anonymous said...

Please give us an update, Alyssa! Your readers demand it of you! ;-)

Praying for recovery.

Tracy said...

Missing your updates.... Hoping all is well..... :-)

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