Saturday, March 13, 2010
2 AM and I'm still awake, writing a song
If I get it all down on paper, it's no longer inside of me,
Threatening the life it belongs to
And I feel like I'm naked in front of the crowd
Cause these words are my diary, screaming out loud
And I know that you'll use them, however you want to
But you can't jump the track, we're like cars on a cable,
And life's like an hourglass, glued to the table
No one can find the rewind button now
Sing it if you understand.
and breathe, just breathe
woah breathe, just breathe,
Oh breathe, just breathe,
Oh breathe, just breathe.
-Anna Nalick
“Luck be a lady, tonight.” I felt like I was standing in front of the roulette table and had put all my money on lucky 7 - in fact, it ended up being lucky 13 - March 13 - the day of my last chemo, for real. As I got dressed that morning and waited for my friend Christine Spolar to pick me up in her Zip car, I dressed assuming we would stop by Georgetown hospital, my blood levels would be too low, we’d be turned away and we would go for a bite to eat in Georgetown. (After all, my absolute neutrofil had been in the .7 danger zone just two days before and my oncologist Dr. Claudine Isaacs had humored me by letting me ‘try again’, even asking a favor of the lovely Harella on 5N who schedules chemotherapy. The chemo nurses still remembered me and were part of my cheering section so it wasn’t a hard sell. Harella bent the rules and allowed them to give chemo in the infusion ward on a Saturday, even though they usually don’t.) I wanted to slip in before surgery the carboplatin that we had missed - to whack these tumors back into the Stone Age - one for good luck and one to grow on.
Dr. Isaacs knew I meant business when she called me on Thursday as I ate my vegetarian sushi lunch at Georgetown’s Epicurean with the bad news about my blood levels and options. She said she’d call me back, but instead with tears in my eyes, I e-mailed her back that I would be waiting for her at the bottom of the stairs in Lombardi’s lobby IF she wanted to talk in person. I set up camp and waited (not too long) and grinned as she poked her head down the staircase. “You can see how I used to knee-cap four-stars in the Pentagon hallways,” I said with a grin. I knew their schedules, anticipated their movements and intercepted them when they least wanted to see or hear from me.” She said, “I have learned that you must have been a very good reporter.” I told her she was, unfortunately, on the receiving end of a journalist with a little too much time on her hands and only one story.
So when Chris Spolar and I arrived at Georgetown 7N, the weekend chemo ward, it was slightly different from my experience downstairs - though Jennifer the traveling oncology nurse who I knew had a crush on Shepard Smith greeted me warmly and got me started. She has served in hospitals all over the country from Cedars Sinai in L.A., where one oncologist wouldn’t even treat breast cancer patients if they wouldn’t agree to exercise seriously. (That's so California.) Jennifer served at the Mayo Clinic and other well-known cancer centers. She has whispered to me the secrets of variations on treatment at all the different hospitals.
If you want to know the truth about reactions to therapies, which drugs work best, which protocols are handled best by the patients, you ask a nurse. (No disrespect meant to Claudine, or Eric or Lisa or the other wonderful doctors who have helped me.) The nurses have seen it all. They will tell you to put 97 percent pure Aloe Vera on your skin right after radiation so that you don’t get burned. Pack it on with gauze pads. The doctors don’t always share these friendly tips. Jennifer, who normally lives in North Dakota, scowled when I said I was getting carbo a few weeks before my surgery - thought it was risky that my blood levels wouldn’t be up in time for surgery on April 6 and didn’t think that my blood levels would be up today. She has hinted all along that in her experience patients can handle carbo in smaller doses on a weekly basis as opposed to a higher dose every 3 weeks, which I was getting. It often interferes with the schedule of treatment, she told me, because it brings the blood levels down so far. She may have been right. She also told me if she were diagnosed with cancer she would go back to North Dakota to be treated. I was surprised since she had been at all of the best hospitals in the country, but she said in her experience the hospitals in the smaller towns are more willing and able to do cutting edge aggressive treatment because they aren’t as constrained by protocols. Interesting. In Wyoming where she had been a nurse, all the Triple Negative breast cancer patients she said were getting AC plus taxol plus carboplatin. Huh? I told her I thought we were being so out of the box and cutting edge. We were, but so were the doctors in Wyoming (not, mind you, at Sloane Kettering or Dana Farber or UNC where they SAID they wouldn’t have given me carbo outside of a clinical study.) Interesting.
I knew it was good news when she returned quickly from the lab and held up the paper with my blood levels. The white cell count was underlined in yellow highlighter 3.0. Absolute neutrofil 1.9. Nothing could stop me now. Except perhaps the pole that I had to push with me that had the chemo drips attached. I drink so much water to keep my system clean the day of the chemo that I have to get up and go to the bathroom every few minutes. That requires unplugging the chemo machine and taking it with me. Greg used to look all too gleeful when he would pull the plug. I told him that is why he does not have power of attorney. Annalise piped in when we were arguing soon thereafter over nothing important, “You need the Marriage Ref!” Perhaps we all do.
Looking back through this process, I realized that there were a lot of signs along the way - propitious ones that made me think someone was looking down on me and smiling and that while it has been a very good life, it wasn’t over. There was the day my friend Jill Kamp, who used to teach me and my friends acting when we were awkward teenagers, came over and prayed very hard with me at the beginning of this journey. In those days I was running on adrenalin and telling everyone I was going to be fine. I had Luke on one hip and he was getting restless and she came right up into his face and began singing “Tulalulalula...It’s an Irish Lullaby.” I started crying because it reminded me of my Dad. Luke stopped his squirming and was transfixed. It reminded me of the picture I still have clear as day of Jill and my mom stamping the mailing for MetroStage - then called American Showcase Theater Company - with baby Cassie lying across Jill’s knees face down and Jill was putting the stamps on the letters that were balancing on Cassie’s diaper while bouncing her on my mom’s front stoop.
On this day last October, Jill followed me upstairs to my bedroom where she wanted to hold my hands and pray. We sat on the edge of my bed and Jill prayed like a warrior. Suddenly, we heard a huge crash outside in our back garden. Our entire brick wall that separates our yard from the Nepalese Ambassador's residence had crumbled. There had been a light rain but no branches fell. No lightning. The wall simply crumbled. We looked at each other. From that point forward we called it our “Jericho Wall.” “And the walls came tumbling down....” (John Cougar Mellencamp) I didn’t even hear the shofar. Jill said God would always use big signs to speak to me because after all I am really Jewish (after years of being in the Holy Land and being somewhat stubborn.) It did make me stop and think. Then there was that one day waiting to get my blood work done in Lombardi the day before chemo - should have been a simple in and out - but it was taking FOREVER as per usual - and that was before the snows paralyzed Washington. I saw a Gideon’s Bible in the waiting room. I picked it up and looked up the story of Joshua (who also happens to be my Pilates' instructor's name) and Jericho (where we spent many a weekend with the kids and their friends while living in Jerusalem). Thought I should refresh my memory since I now had a pile of bricks in my backyard and it was going to cost a cool $10,000 to fix the mess. Sign or no sign. As I read Joshua, my Dad’s dear friend Neal McCoy came in for blood work behind me. I hadn’t seen him and his wife Cathy in years.
There is also no coincidence that "Souper Girl" who brings me soup every Tuesday night thanks to my foodie friends, is the daughter of my deceased father’s favorite law partner. Her parents were at my wedding. And then there was the time in Lombardi when I looked up at the monitor and there was a nature video playing and suddenly a soundbite from Nisar Malik - a dear friend from when we lived in Pakistan - whom we called Cookie. He had been a producer for ABC and then I guess reinvented himself as a conservationist and was speaking in this video about the spotted leopard. He reached me by Facebook not long thereafter - I hadn’t spoken to him in more than a decade, but he found me. Greg and I smiled when we saw his face in the monitor smiling out at us as we waited in the oncology waiting area.
Then the day of my appearance on the Today Show turned out to be the 20th anniversary of Mandela’s release from Robben Island, my first real news story as a self-proclaimed journalist (at that point I didn’t even play one on TV). I was just a college student and used my Harvard student ID (and a little Hutzpah to get through any security checks along the way.) Greg and I were in our early courting phase there together in Cape Town that historic day when Nelson Mandela walked to freedom after 27 years. Will never forget it and will never forget being in Archbishop Desmond Tutu’s back yard when Mandela gave his first press conference. February 11 also brings me to another coincidence that is not a coincidence. Out of nowhere I heard from a college friend, Mike Patterson, who in a strange twist has an aunt - his mother’s sister who is a dear friend of our family friend Barry Roy. Mike had just put together the connection with his aunt Jody about the family connection. Mike, who was from California and had been very cute in college, sent me the most heartfelt note via Facebook about how he had seen the Today Show appearance and after a number of nostalgic memories from college, he told me that February 11 had been his mom’s birthday. She, I knew, had died of breast cancer shortly before we all started college together. He never got over it - I could see it in his eyes.
Then there are all of the holidays that passed since we started this hellish and very bald journey (you saw the picture of Izzy on the blog - shaved by her groomer because we never brush her - nearly as traumatized as I was when Onder shaved my head for the first time.) We are now in a race to see whose hair grows back quickest. Actually, if I had listened to Izzy - she was always very protective of me during my pregnancy and when Luke was first nursing. She would bark and growl at anyone who came near to us. I thought she was protecting Luke, but since I have weaned him, she still barks at anyone who tries to get close to me and she has been so sad and sickly looking since I started treatment. I swear she is a tumor-sniffing dog. You hear about them. I should have listened better.
Back to the holidays: Halloween - one of my favorites, except now I can’t eat those little mini Reese’s cups or Nestle Crunches that I loved (new health kick, you know). Halloween was the only day that I had to go to the Emergency room to check for possible pneumonia. I’ll never forget the girls coming back from their trick or treating and I looked like Herman Munster and they counted 119 pieces of candy a piece from their Halloween haul on my bedroom floor. They were so wired on chocolate and sugar that they were levitating. Then I stayed up late one night doing the most elaborate Valentine’s with the girls when I would have so much preferred hugging my pillow. Amelia piped up, “Mommy, you have NO idea how important this holiday is to me.” That’s why I was still sitting up clipping doilies.
Perhaps the most vivid memory - that now is a bit haunting given my mammary obsession - was when I went to meet my friend Juliette for a quick sushi lunch up on Wisconsin. Sushi Ko. I was in a hurry - running a tad late as usual. I rounded the bend and opened the door to the restaurant next door. A pulsing beat was coming from behind the door. I squinted coming in from the light to a darkened bar. It was Good Guys, a strip club two blocks from my house and two doors down from Whole Foods. I thought it was like Five Guys - a burger joint. It turned out it did specialize in meat. But instead had topless women hugging poles on the bar. Realizing my mistake, I turned on my heals and went next door to Sushi Ko. Perhaps I should have stayed to research my "reconstruction" options. But I was running late.
When I got back home from Georgetown Hospital after my last chemo (really this is the last, no more superstition, no more Murphy’s law - I am done...because I said so) I eventually crawled into my bed and flipped on the TV. Not much on on a Saturday night but “Top Gun” was replaying. Took me back to high school but also back to one of my first assignments at the Pentagon - flying with the Thunderbirds and pulling 7.1 Gs and throwing up all over the cockpit and for hours afterward while a remote dashboard video camera captured the whole thing for broadcast on Fox News. Thank God I have not had a single day of nausea since chemo began. Really a miracle since I threw up so much flying with the Thunderbirds.
Top Gun was the perfect antidote to chemo...the cocky bravado of the flyboys with the catchy call signs. “Tower, this is Ghost Writer, requesting a flyover?” “Negative, request rejected.” We all know what happens next. Greg has been my Goose. I just hope he survives in the end. He’s been a good wingman, even if he has blocked tear ducts.
I wouldn’t have survived this period without the 80s to serve as my running soundtrack (sorry Greg Scholl, there was some back sliding even though you sent me that great iPod filled with Indy tunes. Tom Waits and co. were just too depressing after a while - I told Greg not to tell you I still occasionally listened to my OLD iPod with all of my cheesy anthems. Others have picked up on my need for the 80s soundtracks. Catie (Meyer) Peterson sent me a homemade 80’s mix yesterday. To which I wrote back to her:
Dear Catie,
Thank you so much for the CD.
I am still an 80s gal. Love the songs you chose - like a scrap book. I have a story for almost each track: Back in the High Life reminds me of Courtney Jewell and Steve Frambes and playing quarters at beach week. Radio Free Europe reminds me of Sarah Williams going onstage and kissing Michael Stipe at some movie theater where REM was playing before anyone knew who they were - they were opening for the Police that week and we had tickets to both. Of course, I think Stipe is gay, but I think Sarah almost turned him. Alison - reminds me of Rob Lindsey and when we came home late from an Elvis Costello concert and my parents were furious. Black Coffee in Bed - which I am having right now...in bed...is also so Sarah Williams' house on Pegram Street - as is Annie Get Your Gun. Fast Car - Tracy Chapman and Harvard Square with Lila - not that we saw Chapman there but she started off busking there and it always reminded me of her when I walked to class and stopped at Au Bon Pain for a ham and cheese croissant on the way to class (I didn't drink coffee then and those microwaved croissants probably gave me cancer.) Grateful Dead will always only remind me of Episcopal boys and UVa. Van Morrison - an Episcopal party at some random house on Russell Road - weird. Yaz - freshman year of college - living in total squalor in Wigglesworth H with Ceci Kurzman and Gretchen Peters and Frances Hu. Joe Cocker - saw him stand up at some random bar in NYC during some visit to our NY roommates one Christmas and now my son Luke looks like Joe Cocker when he dances barrel-chested - I don't think he is doing drugs yet. Solsbury Hill - Peter Gabriel - favorite song ever - reminds me of Sarah W probably because she and Rob Lindsey listened to it and liked it before I stole him away from her ;) Or maybe it was when she went to Spain for the summer and fell in love with Tuck Grinnan. Can't remember. Solsbury Hill takes me back to my favorite movie from that period “Birdy” with Matthew Modine and Nicholas Cage. I sat next to Matthew Modine at the White House Correspondents' dinner last year and told him how much I loved Birdy. He does a lot of good work for Wounded Warriors so he’s a good guy.
Love,
Jennifer
Then Della Pace Patteson shows up with her brood last night and she and husband John had taken every song referenced in my blog and put it on two CDs. It is now the official soundtrack to this horror flick.
That being said, life is sweeter having lived and felt as deeply as I have through the years. Perhaps that is why I chose Velvet Underground and Niko to quote on my senior page in high school: “I’ll be your mirror - reflect what you are...in case you don’t know....” On and on.
But if I had to choose one anthem for my 40th year it would have to be “The Climb.” It always brings me to my knees - not in any small way because I first heard Miley sing it live at the Kids’ Inaugural last year and since I was so pregnant with Luke, Fox didn’t give me much of a role in the real Inaugural - too cold and they were so worried I would go into labor and then be stuck unable to get to the hospital - so I warmed the bench. But I got to go to the Kids’ Inaugural. Miley and Hannah Montana will always have a warm place in my heart because when I flew to Pakistan in the hours after Benazir Bhutto was assassinated, I had to return the next week because I had pulled major strings to get Hannah Montana tickets for the girls. (Thanks, Cec.) So when President Musharraf’s office called to say I could have an interview on Monday (the day of the Hannah Montana show) I said, “No, thank you.”
Now her songs run like a soundtrack in my head wherever I go, especially The Climb. And what a climb it has been - still clinging to the precipice with bloodied knuckles, but I now have some great Aloe Vera and I know they (I'll) eventually heal.
I can almost see it
That dream I am dreaming
But there's a voice inside my head saying "You'll never reach it"
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shaking
But I gotta keep trying
Gotta keep my head held high
There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose (MAYBE NOT)
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb .
The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking I may not know it
But these are the moments that I'm gonna remember most, yeah
Just gotta keep going
And I, I got to be strong
Just keep pushing on
'Cause there's always gonna be another mountain I
'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb...
