Sunday, March 12, 2006

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!

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.


Jamie said...

Hey Sweetie,

That was a great list!!! You are so amazing. I think I speak for everyone when I say that it is YOUR sense of humor, and YOUR outlook on life, and YOUR determination and strength that is getting you through this ordeal. We are all just here to hold your hand and hopefully make you laugh, you are the one who is doing all the work.

I love you sooooooo much!!!


P.S. Thanks for not ratting me out on the Philly Cheesteak ;)

Jon Endrikat said...

Hi Erica,

Hey, if Hugh Heffner can walk around in a robe all day so can you! Just wanted to drop you a line to let you know that I was thinking about you. Sounds like your new TV is working out quite well... at least you got it in time for Grey's Anatomy (phew). Hope you are enjoying the new house and the lovely puppy. Btw. you should get a bell to ring any time you need something. I've always wanted to do that. Hehe

All my love,


Gemma said...

Hey Erica-
I am happy to hear that you are safe at home. Since I found out about your situation a few weeks ago, a day hasn't gone by where I haven't thought about you or said a prayer for you. Glad to see your smiling face.

Last we spoke, you were going to Japan? I look forward to hearing from you, which I understand I need to take a number and wait in line. It's amazing how much love and support you have.
Lots of Love,

$maker said...


$maker said...

If Jaci can hook up a picture of naptime at the supermarket, I think quite a few of us would appreciate it :) Loved the list, and am so inspired by both of you, I can't even say. You are in my thoughts every hour of the day. I love you girls- enjoy the new digs! (Remember: no boys past 11:00pm!)

TheDarkerUma said...


Man, that smile of yours is just untouchable.

Thank you for the lists. Your honesty and positive attitude is just lovely.

Love Uma

P.S. I told you....cell phones/phones are, for lack of a better word...argh! Nothing beats being face to face.

tracybogue said...

Hi Ladies,
Glad to know you are back home and doing well. Please send me your address so I can keep in touch.
xoxoxo tracy

Brian said...


Much like Ambur articulated so well a few days ago, I too have been glued to this blog the last couple of weeks! I'm like a junkie now, checking for new posts on your progress, and seeing old friends' names! Colorado taxpayer money at its finest, considering I only have internet at work!! Thank you to Jaci for an amazing job w/ all the updates and pics!!

I've been out of the loop the last few weeks b/c I too have been in and out of the hospital, but nothing compared to what you and your family are going through...As Nicky already requested, I was hoping to get your new address as email is

My love and prayers are w/ you and and your family! My mom has masses being said for you at St. Louis continuously! You have always been a breathe of fresh air to everyone around you, and I'm sorry it took something like this to bring so many back together!! But I'm glad we are all sticking together...ALL FOR YOU! You must be overwhelmed w/ love with how much support you've been receiving from all over the world! Evidence, once again, of what an extraordinarily beautiful and special person you are! Nothing could ever change that!