Wednesday, June 23, 2010

Southern Hospitality

My mom, sisters and Annalise and Amelia all met up in Savannah where sister Caitlin lives and works. They've been at the beach everyday and been enjoying a little southern hospitality - the guest of Richard Eckburg, a patron saint of Army Rangers everywhere but especially in Savannah. He invited them all out to the Pink House. I, on the other hand, have my last radiation treatment tomorrow. I am done (almost.) And ready to get back to what everyone describes as the 'new normal.' Will let you know how it goes.

If you are a survivor, watch this...

Row, row, row your boat...

Deb Charles is a friend. She also lent me her 'husband' before my mastectomy. (That's a pillow with two arms that helps you sleep, silly.) She's a fighter!

Thursday, June 10, 2010

My little man

Can't wait for 2012!

It's my party and ....

I don’t know why I started crying. I didn’t mean to. I guess it is the normal reaction to the letdown.

May 17 wasn’t even my birthday, but it might as well have been. My real birthday had come and gone. I was going through the motions on that day: April 20 - two weeks to the day after my surgery. I think I was still in shock or anesthetized and all I really wanted to do was talk to my oncologist, Claudine Isaacs, who I was supposed to see later that day. Andrea and Anamarija and Sarah Williams had brought me one Georgetown Cupcake, which I devoured. I plan to allow myself one once a year (except this year I have already had two so I guess I won't get my next one until 2012.) On my real birthday, I was distracted and trying to look excited when my friends showered me with love, attention and presents. And I mean shower. You have no idea how good my friends are. I am still getting these amazing vegan dishes dropped at my doorstep because my friends are so generous (and they don’t trust me to stay on the straight and narrow. They know that my mouth says ‘whole grain’ but my mind says bagel with cream cheese. They know how important a low saturated fat, organic, vegan diet is in terms of keeping this cancer at bay for the next 3 years, which is the danger period and so they continue to spoil me with the wonderful Christine Merkle, who has taught me to even like kale. Actually, I really don’t like kale, but I know how good it is for me and now I eat it because without Tamoxifen or Herceptin, food is my best pharmaceutical defense in keeping this cancer at bay.)

I was about to tell you about May 17. That’s when the love affair began (some might liken it more to a crack addiction. Let’s just say it is very SJP.) It was supposed to be a normal day. I’m not even sure if I had started radiation yet. It is all a bit blurry. But my Italian friend and neighbor Adele had made a reservation at Cafe Milano in Georgetown for lunch - to celebrate. It was a little overcast but when the plate of prosciutto arrived and the exquisite course upon course of Mediterranean plates kept coming we might as well have been in sunny Tuscany or Sardinia.
They offered us champagne. They could tell we were celebrating. They didn’t know I no longer drank. I took a token sip. Adele is one of the warmest, most thoughtful people I know (and I know many) and she is INSANE when it comes to spoiling a girl. I remember when we moved into our new house, she sent as a house warming gift the most exquisite orchid that I have EVER seen. Magenta and architecturally perfect. The kind you see in a hotel lobby or a painting. It sat in my front hallway and picked up the shades of pomegranate in the painting that Jerusalem artist Andi Arnowitz did and the suzainy from the Old City of Jerusalem that was woven into another beautiful piece that I bought before leaving Israel. But I digress.

At the end of the meal Adele said (and there was no stopping her - trust me, I tried): “We are now going to pick out a pair of those Louboutins!” No, no, no - in neither language did it work. I relented (ok - secretly it was the most exciting gift I had ever received - other than the time that my friend Eve surprised me with a Georges Reich handbag for my 30th birthday in Moscow a decade earlier!) We got in the car and went to Saks and tried on every pair. She and I both strutted back and forth in front of the mirror. What to do? It’s not every day that you get to even try on a pair of Louboutins. They make you want to put on a ball gown and walk up the front steps of the Met just so you can flash those cherry red soles to the world. And you know that there isn’t a man out there who would understand this. In fact, they don’t even know what the red sole means (until they get the bill). Women don’t wear these shoes for men - they wear them for other women - that’s how crazy we are. We carefully wrap the shoes in red felt bags with a romantic signature from the Parisian artisan who made them. I chose black eel skin - open toed - they must be 6 inches high. And yet they are comfortable. That is the beauty of a Louboutin. Of course, they are excessive. That’s the point. That’s why women who are wearing them smile as if they have a terrible secret. It’s a love affair pure and simple. We tried on so many pairs - should we get closed toe - a little lower - maybe I would wear them more often, if they were shorter. No, no, no. The decision was made when another woman who was eyeing a pair of Manolo Blahniks looked at me and said, “Those (the shorter ones) look mother of the bride. THOSE (the taller ones) look like they should be used for kicking down doors. Sold!

Adele and I hugged and we made our way back home. Kids would be arriving from school soon. They saw the box and asked what was in it. I didn’t have the heart to tell them that they may not be able to go to college or we may have to sell our house and move because of my new addiction. (I told Adele that I would be recalling this day - May 17 - at my first “Shoe-a-holics Anonymous” meeting!) I planned to wear my new friends to a military dinner later in the week. I would be wearing them every day except my toe nails fell off a few days later from the chemo. I mostly wear closed toe shoes right now despite having bought a zillion sandals at DSW when summer started. But somehow I don’t mind the lack of toenails - they don’t bother me so much that I would go and glue on some fake ones - too scared of the glue. In fact they don’t bother me at all. I don’t have to clip my toenails anymore to run. Their new growth remind me of my new hair - like crocuses that suggest winter is at an end and sunny days are on their way. So occasionally I wear my Louboutins just in front of my full length mirror with my exercise pants rolled up. They will look so much better when I have toenails again.

So you would think that a day could not get any better. (And it shouldn’t have, really.) But then Ingrid called. She said she had something to drop off on her way home from work and she couldn’t wait until Paul got home. I said, “Come on over.” She rang the bell. Izzy barked. She handed me a box. It was flat - like a frame. It was a frame. I pulled it out and there it was a black and white lithograph from the cover of the Joshua Tree album. Bono looking off in the distance two and a half decades earlier. At the bottom was his signature. It said, “Jennifer: Love, Live, Peace, Strength. Bono.” I squealed. But this wasn’t any autograph. There was a back story. On September 29 a day after I was diagnosed, we had been in back to back doctor’s appointments since 9 am - first two separate breast surgeons, a quick PhD in oncology, my Ob/gyn who found the tumor, a plastic surgeon who marked up my chest and had me rotate in front of the Sears backdrop for the “before” pictures, and finally my oncologist, Claudine Isaacs. We told our story over and over. We listened. We cried. My mom and Greg accompanied me. I remember Dr. Isaacs crouching in front of me as my shoulders lifted and fell as I heaved with grief. I pleaded with her, “I have to survive this. I have three children. Give me everything you’ve got.” Seven days later a nurse would be looking for a vein and slowly shooting me up with adriamyacin. Claudine crouched in front of me and said, “We are going to get you through this.” September 29 was exhausting. I was catatonic at the end of the meetings. Not broken but tired.

I also had tickets to U2. My friend Paul Nevin called and at that point we hadn’t told anyone - we hadn’t had time. Paul was calling to tell me he had also gotten tickets for that night - at the last minute. I told him I didn’t think I could make it. He said, “Nonsense - we’ll pick you up - you can sleep in the car on the way to FedEx field. You are coming with us.” And I did. My sister Caitlin and I piled into the back of Ingrid’s car. Their friend Julia from the State Department was in the back seat as well. She could sense we were in shock. We didn’t talk. Caitlin just kept squeezing my arm. What a sister - what a day. The traffic was slow (it was like the opening line of “Beautiful Day”) suddenly we saw the stadium in the distance. It was pulsating like the Emerald City. The concert had started. We hurried. We got to the entrance and I handed the guard the printed tickets that Uncle Barry had secured from his cousin John, former Nirvana manager. But Barry was out of town and he had received two sets of tickets in the mail so he gave the second pair to other Godchildren - as he is want to do. They were good tickets - they always were. I knew immediately what had happened. He had given all four of us the same seats. I told Paul and Ingrid and Julia to go ahead. And without missing a beat (fortunately, I was carrying way too much cash in my bag - a bad habit from Moscow when there were no banks). I marched over to a scalper and asked him, “How much?” Too much. I gave him all I had and Caitlin and I had two tickets to the field. We pushed our way through the crowd and made our way pretty close to the stage. The music pulsed. I was still in shock. We sang at the top of our lungs and hugged each other....
“You’ve got to get yourself together, you’ve got stuck in a moment and you can’t get out of it...It’s a Beautiful Day...Don’t let it get away....Where the streets have no name....See the stone set in your eyes, see the nail twist in your side... on and on.”

I slept on the way home. It was a Beautiful Day. But there is more. When Ingrid arrived with the framed autographed photo of Bono she told me what had happened. Her friend Julia was planning to attend the Atlantic Council dinner this year and guess who was coming to dinner? Bono. He was seated at her table in fact. The serendipity! So Ingrid plotted and schemed with Julia for her to go up to Bono and tell her the story of my diagnosis and that we were at the concert that night and ask him to sign a napkin. He did one better and Julia, who by the way in the meantime, had moved to Japan, managed to get it framed and shipped and Ingrid had just gotten it in the mail.

May 17. What a day - and it wasn’t even my birthday. But every day seems to be these days. Go figure. It’s not been all bad, I must say, and I feel a little bad saying it.

Wednesday, June 9, 2010

Day 22

I am always late for radiation. I go every day. And every day it’s the same story. I procrastinate. Try to squeeze in a few more e-mails. Sort through my old magazines so that I can take a pile to donate to the waiting room. Play with Luke after the kids go to school. Water some flowers. Take time for a real oatmeal - the one that takes 30 minutes to cook - not the instant. Chop the walnuts and dates, even though it is almost 9 am. I am supposed to be there, checked in and changed into my gown by 9:15 am. (I put one gown on facing frontwards, the other backwards - for modesty, of which I no longer have any. In fact I could walk into the waiting room without a gown and it would be all the same to me. (Except I wouldn’t want to offend the nice older woman who is always knitting as she waits for her husband who I assume is being treated for prostate cancer.) I show everyone my breasts now because frankly I am as detached from them as if they are an elbow - no more, no less - so there is really very little to be modest about and besides I chose a very immodest cup size). Radiation at Sibley is almost like the drive-through window at McDonald’s. You have a blue i.d. with a barcode that you flash after the automatic sliding doors allow you into the sunny lobby. You might as well be flashing your library card. Then you are supposed to change quickly in a locker room that really feels like it is a changing room at a spa without the Enya. I pride myself on changing in seconds flat once I flash my i.d. I always wear my gym clothes. I never have a bra on. I toss my shirt in a locker. I toss the gowns over my Lululemons. I am seated before they can even round the corner looking for me. They expect me to be late, but not because I am a slow changer.

In the beginning I was late because I always got slowed down at the parking lot. I would always be fumbling for my parking pass and because my arms didn’t lift all that well after the mastectomy and my steering wheel was tight, I’d nearly wipe out the automated post in front of the security gate. I could never get close enough for it to read my parking pass because, again, my arms and pectoral muscles were so sore that I rarely cut the turn into the parking lot just right. The first few times I was too far away and had to get out of the vehicle, which annoyed me. Next time I would try to cut it closer until two of my four wheels rode up on the curb - all that stood between me and the automated scanner that was supposed to make my life easier. I nearly hit that post at least two times a week. Now my arms have a bit more range of motion and I find the whole thing a bit less unwieldy. It all added to my sense that this radiation thing was really annoying and pretty inconvenient after the year I have had. 33 sessions. Daily except the weekends and holidays. It is the reason I am always late. I don’t really want to be there. Anita, the technician in a lab coat who runs my ‘linear accelerator’, said on Monday, “It’s official!” I knew what she was talking about. The fact that I am always late - not too late but about 10 minutes late every day. She repeated, “It’s official.” And then I explained that it really wasn’t anything personal just that I really didn’t want to be there. (People are slotted in pretty tight and you aren’t supposed to be late or you lose your place in line like at a Baskin Robbins.) She said early on they had switched my time to 9:30 am and not told me. She said, “Now don’t you start coming at 9:45 now that you know. Just pretend your appointment is at 9:15.” I got there at 9:25 this morning and declared to Anita that I was ‘early.’ She laughed.

There aren’t a lot of jokes on the linear accelerator, but I keep trying. It’s a little harder now that my right chest wall, breast and underarm are the same color as my skin was that time at the Norfolk Hotel in Nairobi circa 1992 when I didn’t put on sunblock and sat by the pool after a tough stint in Somalia during the famine. My legs that night looked like something out of that Coppertone ad from the 70’s with the dog pulling the little girl’s bikini down and all you could see is burn. I had forgotten about the altitude. That was my last real sunburn. In fact, I really should have had melanoma not breast cancer given my lack of pigmentation and bad relationship to the sun.

I try to make the technicians laugh. I asked them if they could even up my tan this time (the side that they radiate is now a geometric red burn that itches. It is making it hard to wear sundresses and I am ready for the next 10 sessions to come and go. The 99.7 percent aloe vera that my friend Pamela gave me hasn’t really worked. It’s not her fault. It is mine. I didn’t follow the protocol exactly right. Friends and the nurses at Sibley swore by a French product called Biafine and scared me about putting anti-oxidants such as vitamin E and C on the radiated skin. They said Dr. Gage (Sibley’s Irene Gage, the world renowned radiation oncologist that Sibley recruited from Johns Hopkins) wanted to make it burn. They wanted the free radicals from the radiation to break down the walls of any rogue leftover microscopic cancer cells. Who knows? I have used a combination of aloe and Biafine cream, a tube of which is about 18 dollars in Paris. There it can be bought over the counter at a pharmacy. It costs the same here in the U.S. with a prescription IF you have insurance, unless you try to go back to CVS and ask for another tube sooner than the 21 day period that United Healthcare has determined you should make it last. I had been slathering the stuff on and was duly annoyed when I went back on Day 18 and asked for another tube and was told it would be 80 dollars and then the pharmacist asked if I could stretch what I had until Monday. Maybe that is why I am burned. I have run out again and have no idea what day I am on and whether insurance will pay for another tube.

When I lie down on the table, the radiation comes in several bursts. I raise my right arm over my head - in a “fight the power” pose. I couldn’t do that at first so clearly the PT is working, but it still gets stiff. Receiving the radiation feels no different than getting an x-ray. In other words, you can’t feel it. It’s what it does later. Barbara and Anita always mark me with Sharpies once I lie down and pull one arm out of my gown. A few dots over the tattoo. They line up the red laser light lines that look like a sniper rifle’s target and I close my eyes. I am no longer charmed or fooled by the fake trompe l’oeil palm trees or backlit beach scene staring down at me from the ceiling and at the foot of the machine. I don’t have long enough to fall asleep. "Do you snore," General Petraeus asked me recently? I guess he found it relaxing getting radiation, but I don’t have enough time for REM sleep. I usually have just enough time to say the Lord’s Prayer when the first burst of radiation which is accompanied by a small alarm so that you know not to move or breathe. I nearly always make it. “Our father who art in heaven...” On the next burst I usually picture napalm. “Hallowed be thy name. Thy kingdom come. Thy will be done on earth as it is in heaven.” Then I say to myself “all-y-all-y out come free.” I have no idea why we used to say that as kids when we played Foxes and Rabbits in Mr. King’s yard with Gretchen Barbash, Moira Mulroney, Liza Johnson and the other neighborhood kids. That was what whoever was ‘it’ would yell at the end of the game when it was safe to come back to base because the game was over. “Lead us not into temptation...” like the Georgetown Cupcakes that Komen handed out and which I resisted at VP Biden’s house and then on race day only to tell Amelia as I saw the pink boxes in my refrigerator that the girls had left behind that this was my biggest ‘temptation’ to which she replied, ‘Just like in your prayers at night.’ She remembered the word ‘temptation.’ “And deliver us from evil...” And then I start to speed up because the first burst is usually coming to an end. So I slur the ending: “For thine is the kingdom and the power and the glory forever and ever. Amen.” The next two bursts are shorter. Then they turn on the light, the table lowers and returns to the start position, and Barbara, the technician, comes in to tell me that it is ‘ok to put my arm down’. I would if I could but it is frozen in the ‘fight the power’ position and so I slowly will it to lift - slowly - and it crosses over my forehead and over my heart as if I am making the sign of the cross. Then the feeling starts to come back. I put my arm back in my gown and I sit up and I squint from having lain there with my eyes closed and my contacts in. My eyes adjust. I grab my purse and head back to the locker room. I immediately apply the Biafine in the changing room and walk out of the hospital a little more raw and burnt but with my head held high. What’s my choice? Just ten more to go. I feel like the little engine that could.

Sunday, June 6, 2010

Later this year in Jerusalem...

Here's what you may not know about Komen. This is the 30th anniversary of Susan G. Komen for the Cure. Nancy Brinker, who I am seated with here on the set of Shannon Bream's show on Fox today, is the sister of Susan G. Koman who died of breast cancer. Thirty years ago, Nancy promised her sister that she would find a cure for breast cancer so no woman and her family would ever have to go through this again. Since then Komen has become the second largest donor to cancer research after the U.S. government. Since 2006 Komen has given 26 million dollars to study Triple Negative breast cancer (the kind I have and the kind Nancy Brinker had - she and her sister were both BRCA1 carriers.) Komen is in your corner if you are a woman and that is why they can get 40,000 people on a Saturday at 7 am to show up on the Mall in Washington to Race for the Cure. I used to be a bit annoyed when I would see the road closures and all that pink. I didn't 'get it' until I 'got it'. From now on I'll be out there wearing a whacky outfit and running beside women who are wearing t-shirts that say "These breasts are real ones tried to kill me." And "Save Second Base." I even hear that Apple has a new ap - the iTit. Don't ask. And on October 28 - a year and a month after I was diagnosed - I'll be in Jerusalem with my kids and Greg for another historic race. The first Race for a Cure in Jerusalem. The city walls are going to be pink and it will be a homecoming for our family that I will never forget.

Saturday, June 5, 2010

Kids for a Cure

With my goddaughter Clara Scholl who came down from New York with her mother, Chloe. And the other rugrats who rallied out of bed at 5:45 am this morning!

We did it!

We were in it to win it and we did! We raised more than $24,000 - yay, team! There were 40,000 people there today. Komen raised 4.2 million dollars. Wow. Breast cancer had better be scared! Thanks to Gretchen Gailey and Katy Ricalde for leading our team. Gretchen's sign was fab. Katy is just, well, Katy. Caroline Shively brought her baby. Mike Tobin came in from Chicago. Cara Schayer and Emma Haberl raised the most money from Fox. Marty Hill ran like he meant it. Adrienne Ross was there with us til the bitter end. And Colleen Williams stayed with me and Amelia to coax the shorter legs along the run. There were others. You know who you are. Thank you from the bottom of my heart. It was a terrific day.

Friday, June 4, 2010

Go Fox Trotters!

$23,000 and counting...

That's what we have raised so far. We have until midnight to reach our goal of $35,000. Greg and the girls and I just returned from Vice President Biden's house where he and his wife Jill hosted the launch for the Komen Race tonight. It was a lovely tented affair at the Naval Observatory. We walked there. The kids had their picture taken with Joe - I told them not to call him Joe. They ate hot dogs (some things haven't changed). I ate cole slaw and string beans. Amelia introduced herself to Mrs. Obama's mother, who was gracious enough to tell her that she would tell Malia and Sasha that they had met (which made Amelia's night). When we were leaving we were all given a pretty pink box with a Georgetown cupcake inside. (Carbo loading?) When we got home, I gave mine to Rose.

Annalise and Amelia and friend Mizia are now marking up their t-shirts for the big race tomorrow. I keep telling them we are "in it to win it!" Lights out soon. 0 dark 30 wake-up call so that we can be at the start line at 7 am. G'night.

My appeal for Komen on Special Report

Tuesday, June 1, 2010

Please help... support our Komen team June 5

It is the last week of fundraising and we need your help. Press the link below and join our team or simply donate if you can't find your running shoes. Every bit helps. xoxo

Do fatty diets during pregnancy increase cancer risk for our kids?

And these are my Top 10 Nutritional Tips for Cancer patients:

Top ten nutritional tips for Breast Cancer Patients:

1) Eliminate all processed foods.
2) Eliminate everything white: sugar, white breads, white pasta and white rice.
3) Eliminate alcohol - more than 2 drinks a week can increase the chance of a recurrence by two-thirds, according to recent studies presented at the annual San Antonio Breast Conference.
4) Add a scoop of Chia seeds to your oatmeal, smoothies, or quinoa - chia are 'flax on steroids.' Read "Born to Run" about the Tarahumara tribe in Chihuahua, Mexico.
5) If you eat meat make sure it is all highest grade, grass fed, no hormones added.
6) Eliminate dairy - drain on your immune system, potential pathway of hormones into your body. There is a reason that Asian countries have low rates of breast cancer - they don't eat dairy.
7) Any fish should be wild caught - no predators that have high mercury levels. Farm raised - never.
8) Drink 6 cups of green tea a day. Drink filtered water, bubbly water and green tea only - sodas and juices have too much sugar - raises your glycemic level and insulin levels - no good for Triple Negative breast cancer in particular. I allow myself one cup of black coffee each morning because it is full of anti-oxidants. Never drink any bottled water from plastic bottles - think how much plastic leeches into that water when it is shipped and left baking in the sun. Add lemons and cucumbers and limes to your water for flavor and sleep with a pitcher of water next to your bed - make sure you have drunk it by morning.
9) Make sure that you have grain-based protein with every meal - steel cut oatmeal, quinoa, lentils, black beans - you will lose muscle mass during chemo, if you don't eat enough protein. Add a scoop of powdered protein to your organic frozen berry smoothies, if you need more protein.
10) Buy only organic fruits and vegetables - preferably locally grown and in season. Only buy organic berries - great anti-oxidants but be careful of the pesticides - remember Andrew Weil's Dirty Dozen - the 12 most pesticide-laden fruits and vegetables. Use fresh ginger for its anti-nausea qualities. Ginger and garlic and turmeric are great natural cancer fighting spices.

Two great go to breakfasts for chemo and after: steel cut Irish oatmeal, chopped walnuts (anti-inflammatory), chopped organic Medjool dates, agave nectar (the only sweetener I use because it has the lowest glycemic index and is made from cactus nectar. Or whole grain (darkest possible) toast with avocado and olive oil on top - and sea salt sprinkled on. Never use iodized salt - sea salt retains all of its natural minerals - refined salt loses any of its nutritional value.

Vaccine to prevent Breast Cancer?,2933,593822,00.html?test=latestnews