Saturday, February 27, 2010

Symmetry




I remember the day that I was diagnosed with Stage 3 breast cancer on September 28, 2009 - a Monday, Yom Kippur, and 9 years to the day after Israeli leader Ariel Sharon took a walk on the Temple Mount - a day that many mark as the launch of a decade long Intifada or uprising by the Palestinians (I was there in Jerusalem that day when the rocks came lobbing over the Western Wall and the 8 years that followed). I remember all of it as if it were yesterday. A day after my diagnosis, Greg, my mom and I marched off first thing in the morning to meet a host of surgeons and oncologists ending the exhausting rounds at Georgetown University Hospital at 5:30 pm. That same day, September 29, Annalise, our 8 year-old had an important day herself and my sister Caitlin took her to the orthodontist to get her braces put on. I was not there. But on Thursday of this week, I was there when she got her braces removed and bought her her first pack of gum in 5 months. The next day I had my last taxol treatment - most likely my last chemotherapy. I posed as we walked out the door of the Lombardi Cancer Center at Georgetown for a picture with the man himself, VInce Lombardi - the quotable NFL coach who embodied the never surrender attitude that inspires me everyday. My blood counts had been "perfect", according to my friend and nurse, Beth, who declared it was the fastest return on blood counts from the lab that she could ever recall. Absolute neutrofil count of 4.3. We were off to the races. Greg videotaped our last session. There were a few tears at the end but mostly smiles as the entire infusion staff came up to hug me and sent me off with a standing ovation and cheers as I walked down the hall and out the doors. I held back my tears until I got to the elevator. So now Annalise has a new smile to match that of her mom's. Thank you all for all of your well wishes yesterday. We did it!

Friday, February 26, 2010

Round 15 going into Round 16 "Stockholm Syndrome"


So today could be my last chemo treatment. I am up early. My stomach in knots. At 8:30 pm last night I was too manic to lie in bed with the girls and watch “Idol” so I rode the exercise bike for an hour and made them watch it on the 17 inch television in the corner of my bedroom office so that I could keep the anxiety at bay. They have gotten used to my mania and don’t even look up from what they are doing to question my irrational requests. (I had already cleaned and organized every pile in my room.)

I should be excited. Greg and I should be pulling out that bottle of Moet that Anne Harrison dropped off the week I was diagnosed. (Except I don’t drink anymore so even that seems like a waste.) But it is really just one thing...the Irish in me that is unwilling to say this is the ‘last’. I know all too well about Murphy’s Law. It’s in my DNA (my broken DNA). And, anyway, I missed one carboplatin treatment, but the doctors and the jury are out still out on whether it is necessary or a good idea to try to squeeze one more in before surgery. It wreaks havoc on my blood levels and it may be better to move on. We will decide over the next few weeks.

But the real reason that I am anxious is that I am scared to stop chemo. I have gotten used to the ritual. I look forward to it. Chemo Tuesdays turned into Chemo Fridays. And as much as I hate being there and the reason I am there, I actually look forward to it. I have built the whole rhythm of my week around the ritual. I get an extreme adrenalin boost gathering my books and magazines and music as if heading off for a long transatlantic flight. I am usually running late because I try to squeeze in one last workout (thinking that will do the trick) and then as we drive down Wisconsin Avenue, I am still putting my make-up on in the car, even making Solomon (the head valet at Georgetown) wait while I draw in my eyebrows. Getting the chemo is when I feel most in control and proactive about killing this disease. I will miss my nurses (they have a gift and a kindness and a ministry). But mostly I will miss the benadryl. Such a happy, dopey grinning sleep. I haven’t felt so good since I took helium hits at a Lampoon party.
I know. I have turned into Patty Hearst. It’s a simple case of Stockholm syndrome.

In fact, last week when we arrived at the “infusion center’ at Lombardi, my nurse, Jordan, offered me a bed or that I could wait a few minutes for a lounge chair. The young, kind, fresh-faced Jordan had been my first nurse for my first chemo treatment back in October. I hadn’t had her since. I will never forget how gentle she was the first time as she prepared my line and carefully shot the bright red, large, wide vial of adriamyacin “The Red Devil” into my left arm vein. It looked like something out of Frankenstein’s lab. But I digress.

The choice to lie down in a bed or sit in the chair remained. I stood like a deer in the headlights. Paralyzed. I didn’t like the idea of the bed (but it had been mighty comfortable). And Greg said I had slept like a baby the week before and wondered why I wouldn’t leap at the opportunity. (I know I slept like a baby because our friend Paul Nevin had called during the treatment and I hadn’t heard the phone ring and Paul told me later he knew I was asleep because Greg was talking a mighty big game.) After toing and froing, I decided it was ok to lie down. Just this once. The benadryl was going to put me to sleep anyway and I was receiving the taxol plus carboplatin - a double whammy so I might as well enjoy the ride.

As I lay there, I looked at the back of my iPod (the one Greg Scholl sent me from New York) and read the faint gray writing: “Property of Jen Griffin ‘Who Rocks’.” I hadn’t noticed that Greg had engraved the thing. I quickly found “Exile on Main Street” and remembered being in 7th grade at St. Agnes and heading off to a ‘record convention’ with Sarah Williams, Susan Hobson and Shelly Webb to find an early and original copy of “Exile” and “Some Girls”. Now my kids ask me, “Mom, what’s a record?” Oy vay. They also seem to think I am old. When we were studying for Annalise’s social studies test on Wednesday we were trying to find ways for her to remember the definition of ‘citizen’. “Someone who votes”, “someone who can run for public office, attend meetings.” Amelia, then chimes in: “You know, Mom, like you are a ‘senior’ citizen.” We have had a lot of togetherness these past few months.

I take a lot of abuse these days from my daughters. They tease me, which I take as a good sign because it means they aren’t scared. On Monday I am going to ‘model’ for the American Cancer Society’s “Look Good, Feel Better” campaign. Before and after pics - how to put on make-up and rock a wig so that you ‘feel better’ during these months of treatment. It is not exactly the kind of modeling I had dreamed about and it won’t put me on the cover of Sports Illustrated, which is where I had hoped I might land after all this Pilates, but Hans (my brilliant wig master) had suggested I do it - so I am.

I also have some choices to make now that chemo is ending - do I get a double or single mastectomy? Do I use silicone or saline implants? Do I spare the nipples? (I know, who knew?) Or do I just have them tattoo them on. My surgeon, the genius Dr. Shawna Willey, told me I can even choose the color of the tattoo. She told me about how one of her patients even took her interior designer to help her choose the color. Another friend told me that a woman she knew in the same predicament chose to tattoo blue stars on each side instead of nipples. And then there is the decision about whether to go for a harder surgery up front and possibly do a flap reconstruction where they take your own fat from your tummy or hips and construct the breast. For me that sounds like a twofer - a little liposuction and breasts like Pamela Anderson. A win-win. But when I explained to 7 year-old Amelia the choices and how they reconstruct the breasts she was not buying the idea of taking my belly fat and turning it into a boob. “Then you would have a belly button on your breast,” she said matter-of-factly. How true. It would be like a Cyclops.

I am heading off to Georgetown in a few minutes. Remembering all the Vince Lombardi quotes I can muster: “It's not whether you get knocked down, it's whether you get up.” “If winning isn't everything, why do they keep score?”

Wish me luck with chemo. Counts high. Maybe the last. Maybe not. But as Ceci Kurzman reminded me the reason I haven’t had any side effects from the chemo is that my body is used to abuse. In fact, really chemo has nothing on the Scorpion Bowls we got from the Hong Kong and drank with straws off of the floor of Wigglesworth H freshman year.

Greg wants to know if they will give him the benadryl ‘to go’ so that he can start administering this stuff to me at home. He always thought that I was most happy and most mellow when attached to an epidural while waiting for babies to arrive. He has asked a number of anesthesiologists about whether it could be permanently attached and he could administer a daily dose. People say I should meditate. I prefer to kick a little *%$#. And, yes, Melie cancer does have an $#@!. I know because I have kicked it.

(Photo Courtesy of Fuschia Foundation and cards can be ordered from http://www.thinkbrighter.org/)

Thursday, February 25, 2010

Recipe of the Day



Middle Eastern Chickpea Burgers (from Rebecca Katz's "The Cancer Fighting Kitchen")

2 cups cooked chickpeas or 1 - 15 ounce can, drained, rinsed and mixed with a spritz of fresh lemon juice and a pinch of sea salt
1/2 teaspoon sea salt
1/2 teaspoon turmeric
1/2 teaspoon paprika
1/4 teaspoon ground cumin
1/4 teaspoon ground coriander
1/8 teaspoon ground cinnamon
2 teaspoons minced garlic
1 teaspoon minced fresh ginger
3 tablespoons extra-virgin olive oil
2 tablespoons freshly squeezed lemon juice
2 1/2 cups cooked brown basmati rice
3 tablespoons finely diced red bell pepper
1/4 loosely packed minced fresh flat-leaf parsley

Preheat oven to 375 F and line a baking sheet with parchment paper.

Combine the chickpeas, salt, turmeric, paprika, cumin, coriander, cinnamon, garlic, ginger, olive oil, and lemon juice in a food processor and process until smooth and well combined, scraping the sides occasionally. Transfer the mixture to a bowl and fold in the rice, bell pepper, and parsley.

Moisten your hands to keep the mixture from stickingm then shape the mixture into 1/4 inch-thick patties about 2 1/2 inches in diameter. Place them on the prepared pan and bake for 22 to 25 minutes, until the patties start to get dry and crisp on the outside. They will firm up as they cool.

Variation: for a crispy burger, heat 2 teaspoons of olive oil in a skillet over medium heat and cook the patties for about 3 minutes on each side, until golden brown.

Basil Lemon Drizzle (from Rebecca Katz's "The Cancer Fighting Kitchen")


Lemon zest and basil dazzles your chemo blanched tastebuds and gets you excited to eat again. You can put this on veggies or fish or chickpea burgers. When in doubt add lemon. When you can't stomach any more water or bubbly water - add lemon. It will stimulate your appetite and clean your palate. This little zinger is loaded with anti-oxidant fighting basil.

1 cup loosely packed fresh basil leaves
2 tablespoons freshly squeezed lemon juice
1 teaspoon lemon zest
1/4 cup extra-virgin olive oil
1 teaspoon maple syrup (optional)
1/4 teaspoon salt

Put all ingredients in a food processor and process until well blended.

Wednesday, February 24, 2010

"Luke, take out the trash"


http://gallery.me.com/jgriffin15#100057

As Luke prepares to turn one next Tuesday, he is put to work. (click on video above)

My Horoscope today

The Washington Post
Wednesday. February 24, 2010
TAURUS (April 20-May 20) There's a puzzle to be solved in your life. Getting the answer isn't as important as wondering about the question. Your mind is opened by all of the possibilities. Enjoy this state of unknowing for a while.

Will do.

Tuesday, February 23, 2010

A local call...



A good friend of mine in Jerusalem once told me that the benefit of praying in Jerusalem was that it was just "a local call." Well, I have had dear friends and well wishers lifting my spirits each day with their prayers but none more special than my friends in Jerusalem. Chris Mitchell sent me this photograph of a prayer he placed on my behalf in the Western Wall. Thank you, Chris and Liz. Before you know it, they will be offering Skype!

Friday, February 19, 2010

How to keep your hair (and head) through chemo...



So now they tell me.
A friend in Britain who was just diagnosed with Triple Negative is using the "Cold Cap". Will be interested to see if it works and her golden locks are spared. Another woman has started "The Rapunzel Project" to help women keep their hair during chemo. My cousin, Deb, just sent me this link. If you know someone just starting chemo maybe it is worth asking about.

http://kstp.com/news/stories/S1424354.shtml?cat=1

More hope


In a conversation Greg and I were having with some friends from college two nights ago about what had happened to American initiatives such as "putting a man in space?" Had the nation lost its edge? I begged to differ. From my experience in this world of cancer and medicine, the billions of dollars in private enterprise and medical research are so cutting edge and exciting and ingenious and the scientists and clinicians working on these issues are so dedicated and brilliant. Pharmaceutical companies get a bad name for a variety of reasons right now, but I am personally benefitting from the billions of dollars in R and D that went into coming up with anti-nausea drugs for cancer patients - and shots that you can give yourself at home to raise your blood levels. The doctors and researchers whom I have met in the oncology and pharmo-oncological world, as well as those mapping the genomes to get to the bottom of this disease, are right up there with the Greatest Generation in terms of how they are serving their country and mankind. Every day our scientists and doctors are in essence "putting a man on the moon." These are the most dedicated individuals I have met since leaving the Pentagon. Here is another cancer advance written about in the Wall Street Journal today - and they are doing the same at labs across the country trying to map the Triple Negative DNA so that we can get better targeted treatments and not have to simply napalm every cancer patient and hope they live.
Read on:
http://online.wsj.com/article/SB10001424052748704269004575073640581947242.html?mod=WSJ_hpp_MIDDLENexttoWhatsNewsTop


Image credit: U.S. Department of Energy Human Genome Program, http://www.ornl.gov/hgmis.
"All diseases have a genetic component, whether inherited or resulting from the body's response to environmental stresses like viruses or toxins. The successes of the Human Genome Project (HGP) have even enabled researchers to pinpoint errors in genes--the smallest units of heredity--that cause or contribute to disease. The ultimate goal is to use this information to develop new ways to treat, cure, or even prevent the thousands of diseases that afflict humankind."

Thursday, February 18, 2010

Take two aspirin and call me in the morning...


Taking 2-5 aspirin per week is said to reduce risk of breast cancer recurrence by 50 percent.
http://online.wsj.com/article/SB10001424052748703798904575069834001634898.html?KEYWORDS=breast+cancer

Tuesday, February 16, 2010

What Happened to Miley's Nose?






Like the poor little bird who thinks he's an orphan in P.D. Eastman's children's classic "Are You My Mother?" Luke takes a bite out of a mannequin head. Rightfully confused by his mother's constant attempts to disguise her bald head.

Round 14 "Waiting for the Man"



It was not clear when I woke up last Friday, Feb. 12 that I would be able to make it home in time for chemo. The trains had all been cancelled up and down the Eastern seaboard on Thursday due to the snow - not just planes but trains. I liked the challenge of making it back. It added a little adrenalin to the situation, which of course I miss. So I lined up not only a plan B, but also a plan C. First, I would head to Penn Station to catch the 7 am Acela. Had a reservation, but again pictured panicked travellers pushing and shoving their way onto the train as if it were wartime Germany. Plan B was to have a driver with a 4 wheel drive unafraid to put the pedal to the metal waiting outside Madison Square Garden just in case. Plan C was to arrange to have my chemo in New York. In the Green Room of the Today studios, I had already hit up Dr. Freya Schnabel for my drugs. (I was already shooting up neupogen in my hotel room so it had become a slippery slope and I was starting to feel a bit like Lou Reed “Waiting for the Man.”) Schnabel is the director of Breast Surgery at NYU and the doctor that the show’s producers chose to talk about Triple Negative with me on set last Thursday. She had given me her cell phone and I wasn’t afraid to use it. I asked her if I could get the carbo and taxol “to go”. “Supersize me,” I jested. But I still wanted to be able to crawl into my own bed with my own pillow after getting zapped that afternoon. So if there was a train running, I was going to be on it, and I really didn’t want to have to hijack it.

As luck would have it, the train left on time and I didn’t need to resort to violence. When I got to Union Station in Washington, DC, I hauled my bags which had grown heavier thanks to the stash of Webkinz that I had bought as a bribe for the girls for not having taken them with me. Melissa Pranger (another John Eaton Elementary School mother happened to have been in NY with her daughter who is in Annalise’s class). When she called from the American Girl Doll store to see if I needed anything, I asked her if she had seen any Webkinz, those stuffed toys that the kids play games with online. She assured me she could hook me up. I slipped her some cash and the deal went down in the lobby of the Club Quarters where I had a room on 51st next to Rockefeller Plaza.

At Union Station when I finally got to the front of the cab line, having mustered just enough strength to haul all of my bags from the track to the curbside, I collapsed into the back seat and gave the driver my home address. The snow had melted from the streets. Mother nature had done what the mayor’s office couldn’t and cleared what looked like most of the roads downtown, despite some glacier-like snowbanks. The driver of the vehicle looked at me in his rear view mirror and said the fare would be “double.” (He must have thought he had someone just off the boat, or the train, as the case might be.) I said, “What?” He said, “Snow Emergency.” (Hell hath no fury like a woman on her way to chemo.) I told him where he could put his “snow emergency” (especially since there was none in the street.) Using language favored by the longshoreman side of the family, I told him, “This city needs to get a grip about snow.” He asked, “If I wanted him to drop me back at Union Station?” I said, “No, drop me at the first policeman.” Suddenly, we were on our way to my house. (Might have been the Gurkha knife I had to his throat). Moral of the story: do not stand in the way of a gal en route to chemo.

When I opened the front door, there was a sign written on a white board welcoming me home. (Much like the one the girls made me exactly a year before when Luke and I returned home from the hospital after he was born.) There were also two Valentine sugar cookies set on a white plate in the hallway that said “Welcome Back from NY” and “I Love You.” There was a bite out of one of the star cookies and Luke had a “Most Improved” sticker on his forehead. I hugged them all as Izzy the cockapoo levitated in search of a hug (she is my most needy child.) As the girls sat down with me to open the Webkinz, Luke was already helping me unpack and came across the styrofoam mannequin head that I use for my wigs. While no one was looking, he bit the nose off. I only realized this when I saw his mouth full of the styrofoam. Annalise queried me on my choice of coats for the Today Show appearance. “Mom, you looked like you were wearing a witch’s coat. Nobody wears a witch’s coat on TV.” Harsh. And, she added, "you didn’t take our advice to unbutton the bottom two buttons." I told her this is not “Project Runway”. The Webkinz soothed the pain for them of having been left behind. Amelia wondered out loud why they hadn’t used her cartwheel. I told her maybe it had something to do with the Winter Olympics (gymnastics is a summer sport, I reminded her).

At Georgetown's Lombardi Cancer Center that afternoon Greg and I walked through the doors of the infusion center only to find that it was not only standing room only, but for the first time they didn’t have a Barko lounger for me and I was being assigned to a bed. A bed? That filled me with horror. I’ve seen what those getting chemo in a bed look like and it isn’t pretty. Much too sick for my liking. I really felt like they might as well just open the coffin and ask me to lie down. I hesitated and then didn’t want to make an issue of it so Greg put our stuff in the corner. I sat on the bed. I leaned on the bed. I hopped up every time someone came to check on my blood pressure or vitals while we waited for my blood levels. I didn’t want to lean back on the pillow. I didn’t want to look like I couldn’t sit up. So I perked up anytime anyone peeked in. We waited. And then we waited some more. The blood counters were taking their sweet time in the lab. Finally, I leaned back on the pillow. Maybe I even closed one eye. Boy, was it comfortable. Maybe even more comfortable than the Barko loungers in the first class section. Not bad (and this was before benadryl). News that my counts were too low to get carbo came back and at that point I decided I was over carbo. I knew it was bad when the nurse came through with the results: a 1.0 neutrofil count and before I could say anything she handed me the handset and I heard Dr. Isaacs' voice on the other end of the line. Dr. Isaacs, who knows I don’t take no for an answer lightly. I told her it’s ok as long as I get the taxol. I really wasn’t disappointed. "My body had spoken," as Dr Eric Winer of Dana Farber later told me. The carbo was doing too much harm to my marrow. We’ll wait and see again this Friday if we try again. This is an art not a science.

And if anyone out there thinks that miracles don’t occur then they haven’t heard the story of my friend Lani Kass, an adviser to the Chairman of the Joint Chiefs at the Pentagon. Lani and I hit it off immediately when I did a cyber hackers story a few years back. At the time she worked for the Air Force and had been born in Israel so we had a lot to talk about after my nearly eight years there covering the intifada. (She also has a swash of bright red hair so now we have even more in common.) (She often reminds me, if I ever mention feeling teary, she says, "Remember what Israelis tell their children when they cry: 'Don’t cry - you want to be a paratrooper don’t you?'") Her husband Norm was diagnosed before Christmas with a shocking and rare form of kidney cancer. The potential for a cure so to speak was in the 3 - 4 percent range. It did not look good. He needed surgery at Johns Hopkins. Again, the prognosis was bleak. This is the e-mail I received from Lani on February 2

Subject: Miracle.

“I apologize for the mass e-mail, but thought it's the fastest way to share terrific news--actually, a miracle!  Doctor Allaf just called with the pathology report: Norm's tumor is a very rare BENIGN growth called oncocythoma. It looks identical to renal cell carcinoma and could turn cancerous if left untreated, but it's out, gone, and Norm is essentially cured. We are truly blessed. He is too dazed and in pain to fully realize how wonderful this is. But we both know deep in our hearts that the power of your prayers had a lot to do with this miraculous outcome. For that we are forever in your debt. Thank you all for the friendship and support!  Lani"

More from Lani on Feb 3:

"There's so much to learn from Norm's story: first, have an aggressive spouse who doesn't take no for an answer (just partially kidding here). I bitched he didn't look/act normal for months. He finally got an annual physical in late Nov, some things on blood tests were out of range and BP was high, but the dude wasn't worried. Matter of fact, Norm was supposed to come see him again on Feb 23. Two, get an equally aggressive cardiologist, preferably in cahoots w/your wife.  Three, get the cardiologist to associate high BP w/kidneys (not exactly her domain, but she found nothing wrong w/the cardio-vascular system. Four, have the cardiologist send you for a sonogram which found the solid mass on your kidney. Five, have your wife do a ton of research while you're in denial and find out the good news about kidney cancer (97% cure when caught early--less than 4 cm) and bad news: if it spreads, you're dead. No chemo or radiation work. Make sure your spouse keeps this info to herself. Six (and most important): see at least 3 docs!!!!! Go to the best hospital (Hopkins in our case) and the highest volume doc you can find!  Instinct counts here!  The doc at Washington Hospital Center wanted to do an open nephrectomy (foot long incision; take out kidney, tumor and all. The wonderful doc at Inova was honest enough to admit that "we are good but not the best". We liked him a lot, but went to Hopkins. Dr Mohamad Allaf had us when he told us he is operating 4-5 days a week and seeing patients just once a week. He said the tumor was bigger than he'd like for a laparascopic procedure but "I've done tougher". On the day of the surgery, when he walked us through the risks and options again he said: "we're looking for a home run". 6 hours later, 3 docs and a dummy (robot) had the tumor in the bag--literally. He was sure it was renal cell carcinoma because it was very vascular and "angry" but encapsulated and confined to the kidney. He got 5 cm of clean margins and saved 85% of Norm's kidney function. We were cool w/97% survival rate and CTs every 6 months. Just got back from Hopkins last night. Dr Allaf was positively giddy when he called tonight w/the pathology results. He said "you won the lottery". I say we have a miracle.
So, the lessons are: pay attention to your body; trust your instincts; don't take no for an answer; if a doc tells you he isn't worried, find another doc who's ready to keep looking for answers even if they don't seem obvious. Once diagnosed, find the best center/doc who has done thousands of procedures like yours. And, have your friends pray. And, never flinch or lose hope!"

One more:
Feb 3
“Oh, and THE most important lesson: when ALL the docs say there's only a 3-5% chance that it's not malignant, believe that you'll be in that tiny minority--even though you'd never play odds like these in Vegas. Same applies to chances of cure, remission, etc. The very rare does happen. Hugs, Lani”

Amen.

I’m still “waiting for the man.” Luke has a mouth full of styrofoam. And "Miley" no longer has a nose. But just like Scarlet O'Hara, I keep remembering: "Tomorrow is another day."

My Horoscope today

WASHINGTON POST Tuesday, February 16
TAURUS (April 20-May 20).
The silliness around you that held no magnetism yesterday now seems tempting. What would happen if you cut loose and had a little more fun? Would others still respect you? Probably. Go for it.

I am heading to the movies! And maybe I'll stop by Saks for those Louboutins.

Thursday, February 11, 2010

In case you missed it...

The Today Show and Triple Negative.

http://today.msnbc.msn.com/id/35347062/ns/today-today_health/

Wednesday, February 10, 2010

Round 13



On Friday I had my taxol. By Sunday our friends the Wilsons had been without power for two days and arrived just in time for the Super Bowl. I had just enough steroids in me to go outside and power through shoveling out my car - even though there was still 32 inches packed down the middle of our street. My toes were numb. I wasn’t sure if it was the taxol (chemotherapy drug) or frostbite so I went inside. The national anthem was being sung. Luke kept thinking every time anyone said “hooray” that it was his cue to toddle into the middle of the family room and put his arms up above his head as though he were making the field goal symbol. Everyone laughed and clapped so he kept doing it every time he heard the crowds go wild. A little after halftime when I realized that the Saints might actually win, I lunged for and grabbed from Izzy’s jaws, the signed pro football that Drew Brees had autographed when I had travelled on a USO tour with him a year and a half ago to Iraq and Afghanistan. I wiped the cockapoo slobber off the ball and put it up high thinking it might be something Luke would appreciate one day. We cheered the Saints and then I, of course, cried with the rest of the country when Brees lifted his 11 month old son up in the air like a trophy. He had been born at about the same time Luke had a year ago. And that trip to Iraq and Afghanistan is where I first figured out I was pregnant because I kept throwing up everytime Brees, myself and the others got onboard our C-130 transport planes and Blackhawk helicopters.

On Tueday as I prepared to leave town for New York with reports of another snowstorm on its way, I pictured Union Station would look like a scene from “The Day After” - that 1980s made for TV movie about a nuclear holocaust with Americans running for the city exits - at least that is what you WOULD picture if you watched the news. I wanted to leave Washington DC for New York to beat the snow and make sure nothing got in the way of my date with the Today Show, I realized I hadn’t been out of town since my diagnosis on September 28. Suddenly, my heart was in my throat and I was paralyzed with anxiety. Ridiculous, you might say after 15 years overseas and a penchant for flying on aid planes to get into the most damaged and war stricken places. I was so nervous I even packed the night before leaving for the train station, which I never, ever do because I like the added adrenalin of cutting it just a little close. Part of the rush. Rookie move. I know.

But Washington being Washington as we headed down Massachusetts Avenue, my nervous preparations and insistence that my neighbor, Adele, leave at 9 am for a 12 noon train, paid off. I had just had chemo Friday. I had already learned how to give myself shots of neupogen to lift my white blood cell counts when we got snowed in that weekend. I packed the one last shot that I needed Tuesday night in the gray ice bag that I used to take my lunch in to the Pentagon each day. I slipped two ice packs in and hoped they would last. When we got off our side street, who could imagine that Mass Ave in front of the Vice President’s house (the Vice President of the United States’ house) still had not been plowed - not even once - since the first snow fell on Saturday. We crawled along with the other white knuckled drivers. Not because there was so much snow - after all Greg and I had lived in Moscow for goodness sake - but because no one could believe the city still hadn’t plowed. We got to Union Station and I hopped out of the car, found a porter, and begged him to watch my bags for an hour. His name was Tom. I was wearing “the Miley” with a cute black skullcap on top. I told him I would meet him at 11:30 am at the Acela. I said, “Are you sure I can leave my computer with you?”
“What was your name again?” I was in a hurry.

I ran across the street to the Fox Studios and into the Green Room where Rhonda was expecting me. I had tried to wash my wigs by myself the night before and the short red “Catherine Zeta-Jones in Chicago” one that I love came out a little flat and a little flyaway. I ran in the door and Rhonda started working her magic. Kissed the Fox Prayer Warriors goodbye and ran back to the train station, forgetting that in the process I had switched from the long brown Miley wig to the short red Zeta-Jones (which really looks more like ‘Josie and the Pussycats’, I’ve decided). It’s red with with a skunk-like highlighted blond stripe. “Tom” was waiting by the gate, but at first he didn’t recognize me. He must have thought I was a hooker. I was so dolled up and had changed wigs. But he was too polite to say anything. On the train, it looked like a scene from Dr. Zhivago - the white smokey snow drifts as we plowed our way up the East Coast. It was so romantic. I sat in the Quiet Car.

I had gone into get my blood work done the day before leaving town so that I would be all teed up when I came back on Friday for my big chemo treatment - carboplatin plus taxol. But I hadn’t taken into account the long lines for blood work. Only one nurse in Lombardi drawing blood.

Amelia (7) and Barry had gone across for a hot chocolate at Starbuck’s. I didn’t want Amelia to see all the sad and slightly scary looking folks waiting for blood work. She didn’t need that so I told them I would just be a minute, but I wasn’t. The line was long. Dr. Isaacs’ right hand, Janet, sensed I was in a hurry and asked the chemo nurses if I could come up to the “infusion” center and have the blood drawn through my port. I sometimes feel that port is like a plug for a gas nozzle and that I am the Bionic Woman - walking around all the time with a metal plug in me that they simply need to stick with a needle to fill me up or take some fluids. It’s like pulling into a gas station. But I always underestimate how emotional it is walking into the “infusion” center when it is not my chemo day. For some reason, when it is chemo day, I put my game face on and I am so psyched to get treatment that I don’t mind being there. But any other time, it takes your breath away.

I saw Mary Ellen. She told me that Gloria, another patient, had picked up the green fleece hat that I had dropped off for her - for when her head gets cold when her hair falls out. It was only her second round. I smiled and made my way to the back and waited alone in a corner chair - the one made of blue fake leather - like a Barko Lounger. I sat and looked at the snow outside. Keith took my blood pressure and vitals and then I sat and waited. Alone. That’s when the tears started. I started weeping like a baby. Almost couldn’t catch my breath. Didn’t like the fact that my 7 year-old was waiting for me across the way at Starbuck’s. I should never have brought her. Just had wanted to get her out of the house - we had all been so housebound by the snow. She was none the wiser, but my heart was in my throat. Mary Ellen drew my blood, but she knew I wasn’t myself. I didn’t have to explain. She already knew. She took the blood quickly and I left with red eyes. I can be so tough, but then the thought of my kids will bring me to my knees.

I also have been a bit thrown because Dr. Shawna Willey, who is doing my double mastectomy on April 6, measured the tumor the other day and much to my dismay, it’s still there. Much smaller than the 6 - 9 cm one they found in September (we’ll never really know what size it was), but nonetheless still there. 1.2 cm by 1.2 cm by 7 mm. It’s a totally different shape, of course - flat, not round and maybe not even filled with cancer cells. Could be scar tissue, but for me until it’s gone, I won’t rest. I felt like I had taken my eye off the ball. All my visualizing the Navy SEALs going after the Al Qaeda cell (or tumor) in my breast had worked at first, but perhaps I had let my team of warriors get a little complacent. They seemed a little comfy on their bases. They needed to get back out and set up some FOB’s (that is Pentagon-speak for Forward Operating Bases), get out amongst the other cells and make sure that the AQ cell doesn’t have any place to run or hide. Where were the Sons of Iraq when you needed them? I went back to visualizing and ordered the imaginary SEALs and others to get back in there and take no prisoners. Perhaps they had gotten complacent because, I, the commander in chief had announced a date for when they could go home. I got ahead of myself. Focusing too much on counting down the chemo treatments (13 down, 4 to go, finish treatment March 5). Perhaps they were already packing to leave without having carried out the necessary mopping up operations. The enemy knew this and was just waiting them out. Not acceptable. I gave the order again and I hope when Dr. Willey goes in for the surgery, there is no sign of the tumor (or the Al Qaeda cell). Not one bit.

Of the 4092 new songs on the iPod that Greg Scholl sent me, I found it funny that I kept gravitating back to Tom Waits and Lou Reed as I came out of my benadryl induced haze - perhaps it is their onetime and my newfound proficiency with needles. In fact, Greg and I were such novices at first with the neupogen shots that he pinched my thigh. I swabbed it with alcohol and then I held the $100 a shot up in the air and accidentally pressed the syringe just enough for the invaluable serum (which will make my counts rise miraculously) to squirt out the top. It felt like a scene from “Dumb and Dumber.” But just a few days later I was shooting up alone in my NY hotel room before heading out the door to dinner. What a slippery slope.

One last thought, Annalise and Amelia were driving with Greg and listening to NPR before the Super Bowl. There was a segment on “NFL coaches” that caught their attention. A montage of screaming coaches from the sidelines. One after the other shouting, “What the hell is going on out there? Get back out there. Listen to me. What the...” Different coaches, same idea, same emphatic yelling. Annalise says to Greg, “Mom would be a good NFL coach.” To which he smiled.

Tune into the Today Show tomorrow (Thursday) at 8:20 am for my segment with Hoda Kotb on Triple Negative breast cancer and how to survive chemo!

Me and Al Roker

Well, I beat the crowds and got on the Acela train expecting Union station in DC to feel like a scene from "The Day After" - a made for tv movie that you'll remember from the 1980's about a nuclear strike on Washington, DC. Beat the snow and got to NYC in plenty of time. The ride up was like a scene from Dr. Zhivago and reminded me of many trips we took by overnight train from Moscow to St. Petersburg when we were posted to Russia in the late 1990's. Now I am ensconced in my hotel overlooking Rockefeller Plaza and will make my way through the snow tomorrow (maybe sneak in a quick skate) and arrive at the Today Show studios tomorrow, pop on some false eyelashes, draw in my eyebrows and talk to Hoda Kotb, who survived breast cancer a year and a half ago. Our scheduled time is now 8:20 am Eastern on Thursday (February 11). We'll be discussing Triple Negative, how to talk to kids about cancer, and nutrition and exercise tips to get through chemo. Seems like we have a captive audience since everyone is snowed in! So get your hot chocolate ready or set your Tivo. And Al and I will shut out the lights when we are done - since everyone else has already left for Vancouver. I may snowboard to the studios in the spirit of the Winter Games! John, have you finished the poster yet?

Saturday, February 6, 2010

My favorite medicine


Recipe of the Day


The wonderful chef Christine Merkle dropped this surprise off on Thursday. It is delectable and so healthy. She used a fish called Hake.

Thai Hake

I came-up with this recipe starting with coconut milk and green curry paste and built from there. So, here it is:
For three servings.
1lb Hake (thickest part)
1/2 to 1tbsp of green curry paste
1 can organic unsweetened coconut milk
1/3 cup fish stock/fume (optional)
1tps agave or to taste
3tbsp organic fish sauce
1/2 orange or red sweet pepper - diced
2 cups baby spinach
1/3 cup basil leaves
6 medium organic white mushrooms - quartered
2 organic roma tomatoes - seeded and diced
1 2inch pice of fresh ginger - thinly sliced
1/2 fresh lime cut in 2
In a large and deep saucepan bring coconut milk and curry paste to a gentle simmer and stir for about 5 mins. Add fish sauce, ginger, lime quarters and fish stock (if using) and continue to simmer till well blended. Remove lime. Add fish and spoon sauce over fish till well coated. Add vegetables and basil and bring back to simmer. (Careful not to let sauce reach the boiling stage). Cook till fish is firm - 5 to 7 minutes. Add blanched snowpeas at the end. Yum!

Cancer fighting properties: (from Rebecca Katz's "The Cancer-Fighting Kitchen" cookbook)
Coconut milk and Coconut oil: Anti-inflammatory, antimicrobial, antibacterial. Coconut is a great antibiotic. Half of its saturated fat content comes from lauric acid, which the body converts to monolaurin, a powerful antibacterial and antiviral compound. Monlaurin is the absolute enemy of many disease-fighting germs, and may play a role in fighting cancer as well.

Ginger
Nausea reducer, anti-inflammatory, antibacterial, NF-kB regulator.
Even your grandmother knew that ginger was good for nausea and an upset stomach;that effect is increased when it's consumed with some protein, which can be especially helpful for chemotherapy-induced nausea. Ginger's active component, spicy gingerol, controlled the growth of human bowel cancer cells in animal models.

Another Saturday Night

How to wash a wig...

click on the title above or enter following address in your browser to watch this home video:
http://gallery.me.com/jgriffin15#100015

Triple Threat

This is a great article explaining: Triple Negative breast cancer - just 10 percent of all breast cancers fall into this category. It was only "named" as such about 5 years ago. It aggressively strikes young women, does not have a targeted cure such as Herceptin and Tamoxifen. Researchers are racing to find the badly needed drugs and it hits the African American community 3 times more than it does others. Why?

http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/1235

Snowmageddon





Two feet of snow blankets DC. This is what it looks like out our front window.

Friday, February 5, 2010

The Storm

I am heading to chemo early today because of the looming blizzard (24 inches expected) and the last time (a year ago) that we had a storm like this I gave birth to baby Luke (March 2). That morning at 5 am the nurses at Sibley Hospital called to say "Don't come. We don't have any nurses." 'What do you mean don't come?" Luke was on his way. He hadn't heard about the snow. And Greg and I drove to another hospital. All those years of Greg driving a Lada Niva in Moscow more than paid off. Today I didn't want to hear there weren't any nurses so I booked for the 7:30 am cocktail hour. (It must be 5 pm somewhere?") And now my double mastectomy is officially scheduled for Tuesday, April 6 (Annalise reminded me that is Izzy's birthday. I knew that dog was good luck.) Annalise also wants to choose my new breast size. Whatever. Dr. Shawna Willey - the best of the best - is doing the surgery at Georgetown. TTYL - which Amelia has informed me means "Talk to you later." Who knew?

Wednesday, February 3, 2010

Round 12 "Oh very young what did you leave us this time..."

Well, I knew if I ate enough Chia seeds, it was bound to happen. I just didn’t think it would happen so quickly - that my head would sprout like a Chia pet. Well, it has but it isn’t the nice highlighted brown color that I had perfected with the help of Onder and Tsvi. It is coming back in gray and that - even Annalise and Amelia recognize - is unacceptable. Luke pats my head and pulls his hand away with a giggle, as if we are reading “Pat the Bunny.” But the girls simply beg me to keep my hat on. This - after I had finally gotten them to realize and to repeat after me: ‘bald is beautiful.’ No mas.

As many of you know last week was a bit of a roller coaster - starting with my trip to Georgetown for my regular “chemo Tuesday.” Well that was a bit of a bust when the nurse came back and said my white and red blood cells combined were a mere 0.8. A few neupogen shots later with the help of our friend and neighbor Helen Matthews and those numbers shot up to 6.8. We have done so many neupogen shots now that Helen and I keep looking for new places on my body to pinch. The shot goes in with a slow burn.

I’ve only had one night sitting up shivering in a cold sweat from “bone ache”, the non-specific rather innocuous way in which doctors and nurses describe a possible side effect from the shot. Fortunately, the Grammy’s were on and the next morning I simply felt like I was recovering from the flu.

Last week, the reporter in me, my unwillingness to take ‘no’ for an answer and Dr. Isaacs sensing that my head was going to start spinning like Linda Blair if I didn’t get chemo, resulted in Dr. Isaacs agreeing that when my blood counts rose that I could get chemo. So I got it last Friday, rather than waiting until Tuesday. Not too eventful, but now the end is really in sight. Four more to go. Not sure I like that my 13th treatment falls this Friday - a bit too close to Friday the 13th - but so be it. “Chemo Tuesdays” have now become “Chemo Fridays,” which is fine by me. It means I will have a little less benadryl in my system as I watch American Idol. It will be interesting to see if I find it quite so “entertaining.”

One way in which last week’s “Chemo Friday” was a step up was the result of my new iPod and broader music selection. Thanks to Greg Scholl I now get to nod off to Cat Stevens. I needed an anthem so I turned to “Baba O’Reilly.” Tongue in cheek, I e-mailed Greg Scholl and asked him where the David Archuletta was on this new fully loaded iPod that he had fedexed to me overnight. Not amused he said to look under “S”. (I guess he doesn’t watch “American Idol.”)

One of my fears every time we go to see Dr. Isaacs is that my Greg looks so bad coming off the overnight shift at NPR that one of these times the nurses just might hook him up to a chemo drip. Whenever we are sitting there waiting, they always ask him if he wants something to drink. I want to wave and say - hang on - I am the patient here. (I guess it’s understandable because he doesn’t have nearly as good a ‘cranial prosthetic’ as me.)

The only real side effect from the chemo that I can report these days, other than a foul mood at times as I look outside and curse Paxutawny Phil, are my fingernails. The discoloration of my finger and toe nails (from the taxol) is so bad that even “Vamp” can’t cover its bruise-like discoloration. The accompanying numbness in my thumbs and big toes is slowing me down on my blackberry, which is annoying. (My thumbs, not my toes.) My nails are so gnarled and I can’t feel my thumbs so I send some pretty whacky blackberry messages. I used to be a ferocious blackberry user. Now every peck hurts. It’s slowed me down just for the time being. You may wonder, “Why are you using a blackberry?” Old habits die hard and like a shark, if I stop moving I may not survive. At the suggestion of my chemo nurse, Mary Ellen, I am trying some homeopathic remedy using tea tree oil. No idea if it works, but the smell certainly keeps me from biting my nails.

We are still in the midst of Operation Delouse the Children’s Heads at our house. Oddly and fortunately, they don’t seem to spread to any adults in our house. So it is possible that these lice have become a figment of Rose’s imagination. I am not sure I have ever actually seen one. Nonetheless the delousing continues. Every night it is the same ritual and Rose combs and checks. We have used the strong medicinal shampoo so many times that I opted for a homeopathic one from the drug store: “Quit Nits”. You leave the lotion on the hair for 4 hours underneath a plastic shower cap. Annalise came upstairs yesterday and pronounced that she felt like the “lunch lady,” then adding with her characteristic impish grin: “I am ready for my close-up!” She wasn’t.

Annalise (8) has become such an “activist” after sending a few dollars to the Humane Society that now we are flooded with donation and membership requests. From the Humane Society, she moved on to PETA. Each night at dinner some solicitor will call and ask for Annalise as though she were the head of the house. She proudly takes their calls. And can’t believe the number of letters awaiting her and addressed to her, each one with different animal stickers with her name on them and our return address. It’s gotten so absurd (and these non-profit marketeers think they have such a live one) that yesterday she came running up the stairs with an invitation to join AARP. She now has a laminated membership card from the American Association of Retired People. (It would be nice if she worked for a few years first.) I told her, however, she could use her new AARP card to get into the movies. If anyone questioned her age, she could simply tell them she was aging like Benjamin Button.

As for the rest of the family, our week has been filled with meetings with “the baby proofers”, a team from SafeStart (thank you, Ginny Taylor and Sarah Williams). The SafeStart team came through our painstakingly renovated home like a bunch of locusts setting up a virtual Alcatraz for baby Luke. Greg calls it our “un-renovation”. It’s likely to cost as much and so far Luke appears non-plussed by the added baby gates and barbed wire. Izzy, the cockapoo, on the other hand is traumatized and keeps getting locked between gates on our stairwell. For those of you who have been to Gaza, our house now feels a bit like Erez.

Wish me luck on Friday. I get both taxol and carboplatin - sort of like a chocolate martini sans the Godiva. Also, if you can tune in next week to the Today Show, our segment on “Triple Negative” is now firmly scheduled for Thursday, February 11 in the 8 am hour. Tivo it. It’s the day before the Olympics begin. Let the games begin!

Wig Shopping at Esther's with Rhonda

video

Shopping for wigs with Rhonda at the beginning of this journey....

Tuesday, February 2, 2010

My Horoscope today

February 2, 2010 The Washington Post

TAURUS (April 20-May 20)
You'll be working to reverse your sins of appetite. Commend yourself for this noble effort. As your signmate Cher said, "Fitness - if it came in a bottle, everybody would have a great body."

First of all, I did not make that up - just happened upon it in the Style section. And, second, who knew that Cher was my signmate?

Monday, February 1, 2010

To Chia or not to Chia....


So what are these Chia seeds that I joke so often about and which Lila - my BFF fitness guru in San Francisco - introduced me to? They are basically flax on steroids. Omega 3's up the wazoo, all the fiber you need, good protein and great amounts of calcium, which helps when you give up dairy - which I recommend every woman do. (Dairy and alcohol are two serious problems for anyone with a breast cancer oncogene). Chia seeds, as I mentioned, are also what the Tarahumara Indians in Chihuahua, Mexico - those ultramarathoners who don't get cancer - eat each morning on their oatmeal. If you haven't already ordered "Born To Run" by former AP war correspondent Christopher McDougall, please do so. It is such a great read about his search for these superathletes who can run 100 miles in their bare feet. Ironically, when they tried to run in Nike running shoes after they were brought to compete at an ultramarathon in Colorado, they lost. The following year they arrived and instead carved up the rubber tread from a Goodyear tire put them on the bottom of their feet, took a last toke on their Marlboro Reds and ran the race and guess what? They won. It was the Chia seeds, I'm convinced.

So what are Chia seeds? They are not a supplement. They are a whole food. According to Sarma Melngailis who wrote "Living Raw Food" - a great cookbook for raw food enthusiasts, "these seeds figured prominently centuries ago in Mayan, Incan, and Aztec cultures, where they were valued as an endurance food and even used as currency. (Chia is the Mayan word for strength.)" I put a scoop of Chia on my oatmeal or in a smoothie. i even trick my kids into having them, by disguising them in the smoothies. I tell them they are berry seeds, if they get really inquisitive because right now anything too healthy or, for goodness sake, too organic is looked at by them with great suspicion (though I did make them watch Oprah last week when she had Michael Pollan ("eat real food, mostly vegetables, not too much") on to talk about how our food supply has become so tainted. He was promoting the new documentary "Food Inc."

Not all Chia are created equally. This is how I order them - a bag a month.
It's becoming a habit.
But let me tell you something whenever I haven't gotten chemo - it is usually because I slacked off the chia.
By the way if you have not done so already, consider switching from white rice to quinoa - tastes much the same but quinoa is a protein and a supergrain - so much more bang for your buck. I eat it with olive oil and salt on it and it is great. You can cook it with some vegetable broth rather than just water for more nutrients and bang. i am all about bang right now. That is why we opted to have lunch today at Pain Quotidien in Georgetown. It's a chain but it is a place that you can go and be confident with its vegan options. I had black bean hummos on an open-faced tartine with avocado sliced on top of it and yummy spicy tahini drizzled on top of a dark nutty bread. Yum.