Friday, December 25, 2009
Wednesday, December 23, 2009
Round 7/8 “Halfway There, Living on a Prayer”
Greg reminded me after our last session yesterday that we were halfway through the chemo treatments. Eight down. Eight more to go.
I had so completely blocked out the now weekly treatments that when Joy Wallis called and offered us tickets to the White House Christmas tour for December 22 at 3:30 (a Tuesday) I immediately said “yes”, not realizing of course that Tuesday I would be a prisoner of the Georgetown chemo ward, or the infusion center as they like to call it. Can’t a girl have a reprieve for Advent? A psychiatrist would have a field day with the “denial” and oversight. Fortunately, Juliette stepped in with tickets for today and the girls have already showered and laid out their new Christmas dresses and charged their camera batteries with the hope of seeing “Bo.”
I forgot to tell everyone back in October that Annalise DID end up in People Magazine when she visited Michelle’s garden with the John Eaton kids when we started this process. You can see about a third of her head in the photo behind the White House chef showing the kids some organic cauliflower, or something. Her teacher had written to tell me to go buy People. Annalise was over the moon with pride when she came home from school and had five copies of the magazine on the entry table, but knowing it was just a “third of her head showing” added with a smile, “imagine how insufferable I would be if it were my WHOLE head.”
I will admit that this process is dragging on. In case I haven’t shared with you the schedule of treatments, it goes something like this, if life doesn’t get in the way: 8 more weekly chemo treatments of Taxol and Carboplatin until February 16. Then they wait 4 weeks until my white blood cells and other counts return to normal to do the double mastectomy (I know there are easier ways to get plastic surgery but let’s just say that my plastic surgeon and I have an understanding that at the end of this, I want something perfect. He promised I won’t have to run with a bra.) The surgery takes about 4 - 6 weeks to recover from. Then the piece de resistance: 5 or 6 weeks of daily radiation. Woo hoo. You do the math.
BUT the good news continues to be that the tumors have melted under this chemo regimen - I liken it to Agent Orange. My eyebrows seem to be the latest casualty - as in almost gone. Nonetheless, Dr. Isaacs literally could not feel the tumor when she checked me yesterday before round 8. All she could find was a line of what she said was likely scar tissue, necrotic tumor cells but nothing round or resembling a tumor. Hooray. Sadly, I can’t let myself celebrate just yet. Call it the Irish superstition in me.
In fact I am so superstitious that I nearly had a heart attack when the tiny ceramic Ganesh (elephant god) sculpture from India that I kept next to my computer broke recently. It was given to me for good fortune by my friend Jan McGirk when I was visiting her in Delhi from Islamabad 13 years ago. At first I panicked. “What did it mean?” It looked like it had been decapitated - his head broken off, likely by Luke. Should I glue it with what the kids call “hot glue” (Crazy Glue)? Or would that bring worse luck? Afterall, I had even managed to kill those pair of frogs that you buy at Child’s Play with the guarantee that essentially they can’t be killed because it is a perfectly balanced ecosystem. Well, it wasn’t so balanced. The little snail cleans the small tank and you really only have to change the water every 4 months and feed them twice a week for them to survive, unless you don’t. It was the perfect pet. Until it wasn’t.
Was it a sign? I firmly embraced my superstition and fear and asked my sister Cassie, if you are a Christian isn’t that supposed to trump this worship of “false idols” or Ganesh? In my living room I have a painting that Greg and I bought before leaving Russia for Jerusalem from Michele Keleman’s friend Oleg that depicts Moses’ brother Aaron with a golden calf sculpture attached to the bottom on a removable peg. Greg always used to like to hide the Golden calf because he didn’t ‘get’ its artistic significance. He even let the girls when they were little play with it. I always liked it because of its symbolism and saved it each time I found it lying next to the kids’ Hannah Montana dolls. Realizing how ridiculous that I was for having this “superstition” about the decapitated Ganesh, I suddenly felt empowered this weekend to throw my “ba’al” in the trash and haven’t looked back. (But I still read my horoscope because it’s fun and always right.)
December 20, 2009, Washington Post: Taurus (April 20 - May 20)
“Your progress has not been the work of easy luck or overnight promotions; it’s been one daily victory after another. Your track record of success will net you more of the same.”
I am going to attribute the tumor shrinkage to a little chemo and to a lot of prayers (not necessarily in that order.) Fox has more Prayer Warriors than you can believe: Shannon, Megan, Molly, Cal, Kelly. I could go on. Then there is Amy Kellogg who sent me from Damascus a note saying that she had been to the convent of St. Thekla in Ma’loula and offered a little prayer. It was in Antioch (Syria) that the Disciples were first called Christians and Thekla, converted by Paul, survived lions and being set alight because of her faith.
Then there are all of my dear friends in Jerusalem (where as my friend Uri Dan used to remind me, ‘it’s a local call’ to God.) Claire Kosinski sends up an Irish prayer each day and Linda Rivkind continues at the Western Wall placing prayer notes in the Wall (thank you, guys.)
Another dear friend here in the U.S. wrote to me after the Florida-Alabama game recently and recalled how Florida quarterback Tim Tebow had entered that game with a bible verse number written on the black streak under his eyes. It was John 16:33. Here it is:
"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
Tebow lost the game and was passed over for the Heisman, but his faith remained intact. My friend didn’t know that I have long ties to the Crimson Tide because of my grandmother’s Alabama roots. Where she grew up in Petrey there were small altars to “Bear” Bryant in the homes of her family members who lived in the town named for them. Nonetheless, I felt for Tebow (sorry Petreys!) and was touched that he would quote John going into that game.
Speaking of eyes I woke up with quite the bruiser a few days ago. I looked like I had been punched in the eye (of course, that mirrored how I felt). Even Mac NC-30 had trouble covering the black eye. (It seems I am bruising easily because my platelets have been hit hard by the chemo.)
My friend Jim Mills likes to quote “Rocky” to me and “Eye of the Tiger” keeps running through my head so I thought I’d include the following hysterical e-mail exchange between Mills, me and James Rosen.
On Dec 6, 2009, at 10:04 AM, firstname.lastname@example.org wrote:
I want to be the guy who stands in the center of the ring when the PA microphone is lowered from the rafters so the final outcome of the fight can be announced in grand style.....Please Don't let Rosen have that job -- he is strictly a corner man holding the three-legged stool, the spit bucket and hollering "two lefts and a right...two lefts then the right. BAM BAM BOOM"!
----- Original Message -----
From: Jennifer Griffin <email@example.com>
Cc: Rosen, James
Sent: Sun Dec 06 21:57:56 2009
Subject: Re: Round 5 (Road Trip...Go Tarheels)
You got it. I picture the Rocky episode where I authorize the trainer (whose name escapes me but will come to me in the middle of the night) to slice my eyeballs with a razor blade. Just remembered, of course, it was Paulie. James can be Paulie. You get to announce the winner.
Per James Rosen:
It takes a special brand of pest to correct a cancer patient on "Rocky" trivia...But one feels on safer ground doing so in this case, knowing, as we all do, the compulsion for historical accuracy that resides within the heart of this particular patient...To wit: Whilst there was indeed a "Paulie" in Mr. Balboa's corner (the lowlife, played by Burt Young, who says of his own sister to Rocky, "Why don't you take her to the zoo? I hear retards like the zoo"), the cut man whom Mr. Balboa implored to cut open his eye, the better for Rocky to absorb more fantastical buckets of Hollywood punishment, was Mickey, played by Burgess Meredith ("Cut me, Mick!")....Okay. Now that that's settled, let's get down to some real trivia...like our daily activities....
Fox News Washington Correspondent
OK so cut me, Mick.
It’s getting late (steroids) so I am going to go to the upper left hand corner of my new Mac computer and hit “Sleep”. It seems to listen to me more than my body (it’s 3:30 am). Need one of those buttons myself.
Merry Christmas, everyone.
Here is Annalise’s Christmas list:
- Animal Ark books (NOT Dog at the Door)
- To have a white Christmas
- A new soccer ball
- Bigger shin guards
- Winter boots (poor kid)
- Luke to dress up as an elf
- My mom to get better (I like that I am eighth!)
- My dad to finish his book (looking iffy, but on track for other nine)
- To have the best Christmas EVER
Sunday, December 20, 2009
Amelia made her Christmas list today. On it were 10 things. Number 7: White Christmas. Annalise put White Christmas as Number 3, after Chocolate. Looks like they'll be getting their wishes. We received 14 inches on Saturday, but these Jerusalem kids didn't have any proper snow gear so I put plastic bags in their tennis shoes and kept throwing their layers in the dryer. It was a perfect weekend. The perfect excuse to stay put.
Wednesday, December 16, 2009
We missed the John Eaton Christmas tree sale because of the rain this weekend so ended up at Dan and Brian's on Massachusetts Ave, a block up the road. Turns out Dan and Brian delivered the Christmas tree to the White House this year and regaled my girls with how they had placed individual trees in Sasha and Malia's bedrooms, which led to gasps from my same age girls. But we chose a beauty nonetheless. And then today the gift from Jane Skinner and her girls (purchased at the CAUSE silent auction for us) arrived in a big beautiful box: a gingerbread house modelled after our home (I had sent the baker pictures of our house). The girls gasped as it came through the door. They were amazed that the artist had even placed a replica of our dog Izzy on the front porch made of marzipan. Amelia declared: it's just like Bo and the White House ginger bread house. Annalise exclaimed: "It's just like Cake Boss."
And it was. Thank you, Jane.
Saturday, December 12, 2009
Sarah Williams and I took Amelia and her two sons, Henry and Winter, my godson, to see the Nutcracker today.
Septime Weber's choreography for the Washington Ballet was exquisite, as were the set and costumes. Amelia had seen the dress rehearsal for it with her class. And she recognized Fritz as being someone named Keith from the 4th grade at John Eaton School. She spent the whole night "en pointe".
Friday, December 11, 2009
Check out this Nicholas Kristof article. As I suspect, it's looming somewhere in our kitchens.
Well, I knew that when my veins started to look worse than Keith Richards' that I probably was going to have to do something about it. You hear about chemo patients getting poked and prodded and eventually the burn of the drugs making the smaller vessels collapse and then it takes three tries to get a line in (which it did last week). So I finally succumbed and on Monday allowed them to put a port in my chest so that it would be easier to administer the drugs. Of course, everyone makes it sound like it is a “simple outpatient procedure,” which of course it is, except if you hate being a patient. And if they decide not to give you much anesthesia because your blood pressure is a little low and your heart is skipping a beat, which mine is and does. So I was awake while they put this round metal device above my heart and threaded the hard plastic tube into my chest. Ouch. Then they said I couldn’t lift anything for a week (yeah right, I have a nine-month-old) and that I couldn’t exercise for two weeks (are they trying to kill me?). Yesterday, I went to Pilates and said to Joshua, my instructor, “OK so we just do lower body work and work on breathing to open my chest.” I then sat on the exercise bike for 30 minutes.” And I feel like a million bucks today.
I knew it was going to be a good day on Monday (despite the surgery) because when I arrived at the Georgetown waiting area all of the flatscreen tvs were playing “It’s a Wonderful Life.” I wrote to some of you in a previous dispatch how this is a movie I used to watch with my Dad when I was a kid before it became overly commercialized with every Christmas. I love the story of George Bailey. All he wanted to do was travel the world, but life got in the way. Everyone knows the story so I won’t get schmaltzy on you, but I saw the fact that it was playing as a little wink and a nod from my Dad, who as many of you know died of lymphoma seven years ago on the day after Christmas.
There have been a lot of signs in fact that he was watching over me. Too many coincidences to count. One of the more extraordinary was when “Souper Girl,” the superhero-like nymph who floats to my door with organic freshly made soup every Tuesday and rings the doorbell just as I am returning from chemo with her brightly colored (antioxidant filled) yummy fresh soups, rang the doorbell a few weeks back and said, “My parents were at your wedding.” I was stunned. I didn’t even know her name. She was just “Souper Girl” to me. I asked her what her parents' names were. She said, “Ira and Marilyn Pollin.” I was stunned. Ira Pollin had been a law partner of my Dad’s and, of course, I remembered her parents coming to my wedding at the Clifton Inn in Charlottesville, Virginia 15 years ago. I threw my arms around her (despite her invisible cape) and she said her Dad nearly fell off his chair when he heard she was cooking for me. He said he thought of my Dad nearly everyday. There are no coincidences. And as my dear friend, Jill Kamp, always reminds me. “God has perfect timing.”
A lot of you have asked me how the kids are doing. And they are doing great, but there is no way this kind of disruption and seeing a parent ill doesn’t have an impact. So it comes out in different ways. I got a call from Annalise’s fabulous teacher, Jennifer Ramsey, last week when I was driving back from North Carolina. An earnest sort of call in which she said there had been an incident. Annalise was ok but that there had been a lot of tears and hurt feelings. I guess it started in the lunch room. Some friends told her that there was a rumor going around that Annalise had breast cancer. So one of her well-meaning friends hopped up on a chair and announced to the 3rd grade, “That’s ridiculous. Annalise can’t have breast cancer,” she said. “She doesn’t have breasts!” At that point the entire class was guffawing and frankly as a 3rd grader to have someone talk about your “breasts” even if you don’t have any is worse than someone saying you have breast cancer. So Annalise spent the whole recess crying. Fortunately, Ms. Ramsey was there braiding her hair, comforting her and showing her how to make origami swans that her Korean grandfather had shown her to make as a girl. Ms. Ramsey, whom I have compared to Michele Pfeiffer in “Dangerous Minds,” is one of these young, hip, dedicated public school teachers who knows that her job is so much more than the three R’s. So she had a big talk with her class about how hard it is for Annalise having her mom sick and how would it feel if their moms were sick. I am told that the whole class was in tears at the end of the lecture and a group hug was required. I decided with Ms. Ramsey that a little damage control was needed so that the kids could see I was ok and to talk to them about what it was we were experiencing with the cancer treatment so I went up to the school last Friday. I put on my most perky wig and a lot of blush and a big smile and I asked them whether they knew anyone in their family who had had cancer and they all put their hands up. And they asked questions about the side effects of chemo - good questions I might add. They wanted information. And one girl, Anna Meikle, told the class how she donated 10 inches of her flaxen long hair to “Locks of Love,” which makes wigs and provides them free to cancer patients. The bell rang and I thanked all the kids for being such good friends to Annalise during this trying time for our family and explained that no matter who you are your family is probably going to feel some pain at some point and it always helps having good friends. They wanted me to come back and show them my other wigs and to even take my wig off so they could see my bald head. I promised to do so. Annalise was grinning from ear to ear. And she’s asked me all week when I am coming back because the kids have more questions and want to talk more about it. Soon.
Amelia’s 1st grade class, on the other hand, surprised me after Thanksgiving with individual handmade cards from the whole class. The funniest was from Isaiah: “November 23 2009 Dear Mrs Griffin, I’m glad you are feeling good. When I feel bad I sit down and drik (sic) Hot tea. And were (sic) my costume.” I laughed out loud and thought next time I sit down to watch “Modern Family” with my hot tea, I need a costume.
Amelia wrote: “Dear Jennifer (she thinks it’s funny to call me Jennifer), I’m so glad your feeling well. I hope you have a great cemo tomorrow! When are you coming in to show the class your bald head (ha ha) Love, Amelia!”
Soon. When I find the right costume.
Luke, on the other hand, decided to surprise us yesterday. And started to walk. 4 steps. 9 months and one week old. Baby steps. Exhausted by the end of the evening because Annalise and Amelia kept pushing him to do his new trick, making him do laps across the living room until his legs gave out. It reminded me of “suicides” in the St. Agnes basketball gym in winter until our legs were noodles. I walked in the front door from Pilates, humming my new anthem “Just Breathe” (Anna Nalick) and the kids shouted for me to come see Luke walk. I dropped my bag and was over the moon. I no longer felt any pain from my port and I lifted Luke up in the air and felt like Hercules. We had both taken some baby steps. His smile and their laughter - no doubt stronger than any chemo drugs. “Just Breathe,” I keep telling myself.
Thursday, December 3, 2009
It was the Monday before Thanksgiving and the phone rang at 8 am that morning. First it was my home phone, which I didn’t reach in time. Then my cell phone rang, which if I had been working I would have assumed to be Kim Schwandt or Justin (and ignored - just kidding, Justin). Few call me at home on my cell phone because we live so close to the Vice President’s house near the Naval Observatory and they send out periodic pulsating signals that block most ATT calls. (Perhaps that is why myself and 3 neighbors are undergoing chemo right now - but we won’t go there.) So most people who know me don’t bother to try my cell unless it is an emergency. I hopped up to get it on a whim and, boy, was I glad I did.
The week before I had written to Dr. Lisa Carey at University of North Carolina. Her name had come up over and over in literature and in conversations as being the “Triple Negative guru”. I had sent her a rather over the top, somewhat emotional e-mail the week before asking to see her. I told my sister Caitlin on Friday that I would be patient, adding that she had until 5 pm Monday to get back to me before I pulled in the big guns. Well, it turned out I didn’t need any guns. She, like so many of the top oncologists whom I have been consulting, is so committed that you don’t really need to pull strings to get into see these extraordinary doctors. They do get back to you and fast because this kind of doctor, I am finding, is a special breed - this is a mission and they serve their patients in a way that I have only encountered at church. Dr. Carey and I spoke and she said she could see me within the week. So my mom and I planned our road trip down to Chapel Hill. (I didn’t used to road trip with my mom but, hey, I also didn’t used to be bald!)
A lot of you have asked why my doctor, the fantastic Dr. Claudine Isaacs, appeared to change the protocol halfway through my chemo treatments (especially when they seem to be working so well) and why the treatments are now scheduled weekly and will last a month longer than expected. They are now expected to end February 16, which delays surgery by a month. Well, that was the plan all along that I would start with 4 rounds of the Adriamyacin and Cytoxan and then switch to Taxol (which it turns out is best handled if it is administered weekly.) The wild card was always the addition of carboplatin (a platinum drug) that has shown a lot of promise with Triple Negative breast cancer, but which is still a little “out of the box,” even according to Dr. Isaacs. She was waiting to consult with the doctor conducting a clinical trial at Brown using carboplatin to decide how frequently to give it to me. The most recent data suggests every 3 weeks is ideal. So 12 weeks Taxol and 4 doses of carbo every 3 weeks meant that my schedule was extended, but it wasn’t because of any problem. It’s just that we are really looking at very cutting edge treatment (aggressive, which I like, and apparently effective.)
Round 5 was last Tuesday and now like a tsunami I am going to get hit every week. (My kids used to tease me and call me “Mommy Tsunami” after I returned from covering the tsunami in Thailand in 2005. Greg, I am sure, egged them on. Now they call me “Baldy Vivaldi,” which has a certain ring to it!)
Andrea Wilson pinch hit for Greg last Tuesday and accompanied me to some tests and braved the chemo ward at Georgetown. She even brought snacks. She sat in with my surgeon, Dr. Shawna Willey (genius) who spent an hour with me going over what my options are after chemo is done. And she was with me when I got the good news that my tumor (according to the sonogram, not by feel) is now officially 1 cm by 1.4 cm. Extraordinary when you consider that the radiologist showed me how it was so big when we started (no one really knows how big) that it was off the screen - too big to measure on the normal sonogram screen, which meant it was larger than 5 cm by quite a bit on either side.
The next day (Wednesday) my mom and I packed a vegan cooler and headed south in the pouring rain. I felt sorry for the Sheriff just across the state line when we entered North Carolina and were still driving 80 though the speed limit had dropped back to 60. He was so nice when he came up to the vehicle and asked for the registration. I didn’t have my hat or wig on and he kindly pretended to go back to his vehicle while we assumed we were getting a ticket and then came back with a nice warning. It really wasn’t fair. (Go Tarheels!)
We arrived at UNC in time to check into the Carolina Inn and make a 12 noon appointment (remember we drove 80). We had back to back meetings with the oncology team - each member of the team spent nearly an hour with us. But here’s the kicker...when Dr. Carey came in, the first question she asked me was not “How do you feel?” (I felt great.) Instead she looked at me quizzically and asked, “Did you go to a small girls’ school in Alexandria called St. Agnes?” I said, “yes.” And she then smiled and told me that her colleague, Claire Dees, had recognized me when my case came up before the tumor board that morning and wanted to know if it was the same Jennifer. It was. (Not crazy about being recognized at the tumor board, I might add.) Claire (two years older) and I had played on the same field hockey team at St. Agnes. Wore the same green kilts and said the same chant that Coach Marsha Way had us say every time we geared up to beat Sidwell: “She who has the will to win, never shall be beaten....” We usually said it so fast no one could actually hear the words because we were also hitting our hockey sticks so solidly in a circle on the ground that it was incomprehensible. So there was Claire Dees, a renowned breast cancer oncologist and researcher, St. Agnes Class of ’85. She hadn’t aged a day.
Dr. Carey essentially agreed with our treatment plan and kept being somewhat amazed that the chemo hadn’t knocked me out more. They kept saying, “Are you sure you don’t feel any pain? No side effects?” We felt reassured that our course was correct.
My mom and I went back to the Carolina Inn across from the DKE house and I went to the gym. Then we walked to Elaine’s for dinner on W. Franklin Street but soon realized there was nothing I could eat on the delicious gourmet menu so we opted for an Asian bistro that was just perfect across the street. I had duck soup with bok choy.
The next morning feeling that we had really confirmed everything that we had been told by Dr. Isaacs, we prepared to leave. But not before my mom took a picture of every artist installation of the Twelve Days of Christmas that the hotel had commissioned to decorate the inn. She wanted to give the pictures to Annalise and Amelia so they could make a book. It took an hour. 12 drummers drumming all the way down to a partridge in a pear tree. (The two turtle doves cooed the whole time I waited on the couch.) The valet parkers eventually turned off her car and I nearly caught a chill because I didn’t have my hat. Round 6 is Tuesday. Go Tarheels! (Sorry, Cass.)