Top Tens

Home sweet home. The journey continues. I am pleased to be out of the hospital although I am still very fatigued and spend a considerable amount of time in bed. The townhouse we’re living in is perfect and I am forever indebted to Jaci, my Mom, and all of the friends who have helped us and continue to help us get situated.

The highlight of yesterday morning (and perhaps of my twenties in general) was falling asleep in a motorized wheelchair in the grocery store. Yes, I am a rock star. After taking a three-hour nap to recover from the over-stimulation of Star Market, many friends came over for dinner. I am humbled by the warmth and love with which they shower me. (Picture is from last night- thanks Gioia!) I worry when I look in the mirror that I might gross someone out with my patchy bald head and gaunt features, but my friends and family seem to not mind. I feel embarrassed to wear a robe constantly and move like molasses, but no one seems to question that it is not sickness in their midst, but recovery. Anyway, suffice to say that the support I am getting makes me feel so positive and normal.

During my last few days in Room 75, I composed a Top Ten List of the best and worst of the 29-day hospital experience. Voila.

Top Ten Best Things:
#10. The wig wall. Almost every visitor who came tried on one of four exciting wigs and we ended up covering a closet door with fabulous pictures of men and women in pink, blond, and red coiffures. I figure some percentage of these up-and-coming young people will definitely run for public office at some point and these could be very valuable.
#9. Perma-Pjs.
#8. No phone. For some reason, talking on the phone gives me a headache, so with very few exceptions, I have literally not spoken on the telephone for a month. Although that leaves Jaci with quite the secretarial duty, it has been liberating for me.
#7. Losing my hair. Three great things about losing one’s hair include the joy of passing under an air-conditioning duct and feeling the tiny breezes on my scalp, the ease of putting on t-shirts, and no bed head.
#6. Hearing from old friends. I am blown away by how many good old friends have come out of the woodwork and look forward to reconnecting with them.
#5. Mail call. There’s nothing like it when the nurse walks in with envelopes and packages and you just can’t believe that they are for you.
#4. My room. It was decorated floor to ceiling with symbols of support and love. Thank you.
#3. Visitors. Don’t let anyone tell you that the power of laughter doesn’t heal. I could feel terrible all day and my fatigue and pain sometimes would just evaporate with the appearance of a new friendly face.
#2. Doctors and nurses. Everyone has told me that I am at one of the best hospitals for treating leukemia and I can attest that the staff of doctors and nurses at Brigham and Women’s Hospital far outstripped any expectations I could have had. My main attending physician is this hilarious Argentinean, who carefully listens to me, who is gentle, informative and down-to-earth. He is a patient-advocate and you can tell. My nurses…. Where to start? These women took care of me night and day, literally. Their efficacy, reliability, and compassion made for many tearful good-byes.
#1. Bringing my loved ones together. I love it when people from different segments of my life have the opportunity to meet and get to know one another. Jamie called it my “elf on the wall” trick (the joke sort of deriving from me being the obvious elephant in the room, but trying to be like a fly on the wall), but many hours of each day was spent in a semi-snooze listening to my Mom get to know my friends, or my sister get to know my graduate school colleagues, or a friend from Japan getting to know a friend from high school, etc. I loved just listening to their precious voices and knowing they were there.

Top Ten Yucky Things
#10. Missing Fletcher School lessons, functions, etc.
#9. Surrounded by great books, DVDs, CDs and no energy or alertness to enjoy them.
#8. “Mechanical soft foods diet”. After my oral/nasal surgery procedure, they gave me a new menu which had such tantalizing things as “pureed French toast”. You don’t do that to a girl on steroids who’s already down 25 pounds. I had to smuggle in Philly cheesesteak sandwiches.
#7. No privacy. The door to my room seemed ceaselessly to open. Close. Open. Close.
#6. Being in a constant tangle of IV wires.
#5. The days when I looked like a monkey. The timing was perfect. Just when we’d shaved my head to a pretty short scruff, I had a nasal biopsy that left one side of my face totally swollen. So, I had sort of the protruding forehead, the sunken beady eyes, big swollen lips. I was the missing link, I swear. Intelligent design theorists need not look further.
#4. Numbness of fingertips.
#3. Soreness of teeth. Like when you get your braces tightened.
#2. Waking up every 1-2 hours for: bloodwork, new IV fluids, blood pressure readings, temperature readings, oxygen readings, heart rate readings, or just to go to the bathroom.
#1. Scaring my family. Because I felt so (relatively) healthy at the time of my admittance and because the team of doctors gave me just the right balance of direct information and encouragement, I never realized that my life was in danger. I still feel worst when I witness the painful empathy of my family. It’s not that bad, I swear!

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By the way, I realize that many of you have background questions. Whether they be medical about just how I ended up in the ER on February 9th, or more "deep background" if you thought I was in Japan, or Washington DC, or engaged in the Caribbean-- how did I end up going to grad school in Boston right now? I do promise to do a blog or two about that soon.