Thursday, March 11, 2010
Well I guess I don’t have Stockholm Syndrome anymore because I am starting to hate my captors. (I am currently plotting a David Rohde-style escape). The secretaries in my oncologist’s office have all changed. Janet Nihan - her nurse coordinator who arranged for my meds and ran interference with the health insurance company - went to transplants. Shelly, who always greeted me with a smile at the check-in desk at Lombardi, was off today and no one knew who I was when I went in search of orders to get my blood drawn. It didn’t help that I had fasted since the night before to get my cholesterol levels for my cardiologist (as if I will ever die from a heart attack - not my genetic propensity right now - never had a cholesterol problem, never will.) So I was hungry, dehydrated and cranky from the fasting and all I tasted were chemicals in my mouth from residual chemo. The friendly smiles and upbeat ‘what can we do to make you more comfortable while you get through this’ - gone.
That morning I had put on my meanest pair of stiletto boots, my rockin’ 1969 blue jeans (which I bought at the beginning of this journey because after pregnancy my Paige and True Religions weren’t fitting quite right). The 1969s were a reminder of the year of my birth, after all, and must have SOME coincidental meaning - though I don’t believe in coincidences - they really are ‘signs’. Now I need a belt to hold them up. I am also wearing my sister Caitlin’s cable knit cashmere turtle neck sweater that fits like a glove because I am meeting my plastic surgeon today and I don’t want him to make any mistake that I don’t want a nice set of breasts when this is done. I am not going to survive this hell and then NOT retain a few of my feminine curves. In fact I want them to be a bit “in your face” when this is all over. “Go big or go home,” that is what Caitlin tells me Georgia Bulldog fans say about everything.
So I guess when I walked into Georgetown Thursday to get my blood work drawn somehow I didn’t look like a cancer patient anymore and I got the same cold, real world “who do you think you are, lady” reception that you get when you aren’t ‘sick’ anymore. I was suddenly a member of the cold, real world. I guess that’s good. Certainly, no one was feeling sorry for me. In fact it made me laugh. Ha - that’s good. No more nostalgia about leaving this place and my weekly date with the chemo ward. The receptionists who didn’t know me kept looking at me skeptically when I asked for parking vouchers or to page Dr. Isaacs’ assistant. They kept saying, “Are you a patient here?” My sense is they have already moved on to the really tough cases. Not a bad thing. Mine is looking somewhat garden variety at this point.
But I had the wind knocked out of me as I was waiting for my blood work and looked over at the parents taking their children into the children’s oncology section. I overheard one father stop his pig-tailed little girl at the door where a large stuffed cookie monster holding a balloon awaited the children before they went inside. He stopped her and said in a firm voice, “You are going to see some kids in here who don’t have any hair and who look sick. They are not like you. You are brave. Ready?” To which she nodded. His tone was a bit hard hearted and cruel, I thought. I also thought, thank God it is me who is going through this and not my children. Later in the day I saw the child walking out following two steps behind her father clinging to the roll of stickers that they had given her to “feel better.” She did look brave.
In terms of my own “treatment” I don’t want to give the impression that I am not grateful or that I am taking anything for granted. In fact on the cancer front, the news continues to be good. When I went to see my surgeon Dr. Shawna Willey on Monday they did a mammogram and a psonogram. The humorless, petite Asian radiologist kept putting more and more K-Y jelly on my breast in the darkened examination room lit only by the fluorescent monitor of the psonogram. I held my breath. She kept saying without enthusiasm and without looking me in the eye, “Well, I don’t see anything”. She kept pressing harder and turning the head of the psonogram probe that really has a similar feel to a cold roll-on deodorant. She repeated over and over again. “I don’t see anything.” As though she were disappointed. She would say, “Here is the titanium clip from your biopsy.” She would push and twist the ultrasound head across my breast one more time. I apologized to her that my underarms smelled a bit since I no longer wear deodorant since getting diagnosed - fearing the aluminum or whatever anti-perspirant does to block the ducts under your arm where your lymph nodes are might contribute to breast cancer. And I haven’t had time to get the crystal stick that everyone says is a natural healthy deodorant option from the health food store.
She said it again, “I don’t see anything.” And for the third time, I said, “That’s good, right?” To which she still refused to answer. I nearly rose up and shook her by the shoulders to say just a little louder, “THAT’S GOOD, RIGHT?” Six weeks ago when we did this procedure, Dr. Willey had found a 1.2 centimeter by 7 mm tumor - and the second tumor was visible but much smaller. The MRI had shown something similar last week but I am told MRI’s have some false positives and pick up a lot of different ‘things’. The MRI was good shrinkage but not the complete response that I had set as a goal in my head. Did they not know by now I was a perfectionist? And that even a large percentage shrinkage wasn’t good enough. That’s the same reason that I didn’t apply to back-up schools when applying to college. I don’t accept second best. Didn’t they know that?
The psonogram screen looked exactly like the one that you look at when you first find out you are pregnant. I remember the first time Greg and I sat in the small examination room at Hadassah, Mount Scopus in Israel looking down over the Dome of the Rock and the old city of Jerusalem and staring at the ultrasound screen as we were awaiting Annalise’s arrival. Like all anxious first parents we had no idea how overwhelmed with emotion we would become when we looked at that first image of the heart beating on the screen. Tears rolled down my cheeks then - just as they did this time as the radiologist looked for the tumor in my breast. I looked harder and harder at what is usually a Rorschach test on the psonogram screen. But now I was a pro about what to look for and it wasn’t the baby heartbeat and kidney shaped fetus that I normally like trying to imagine on these machines. This was an alien inside me - except now it was hiding. And like Freddie Kruger I wasn’t convinced it was really gone. I demanded that the humorless radiologist take her K-Y jelly and squirt it under my armpit and check the lymph nodes. She said, “But, but Dr. Willey didn’t ask that they be checked.” She knew I wasn’t joking and that I didn’t want to have to do the exam myself so she got the jelly. Lymph nodes normal.
And some of you may be saying, “Wait a minute, I thought you had your last chemo?” To which I will remind you, I am Irish and I warned you about Murphy’s Law. There was one carboplatin treatment that we were trying to sneak in before surgery and it was scheduled for today (Friday). We’ll try again tomorrow. And if that doesn’t work we will try again on Tuesday. “Give me the carbo and no one gets hurt.” Kapeesh?
Amelia is already a pro and helping me with the neupogen shots (to get my blood levels up.) She gets the rubbing alcohol, the cotton balls and the Hello, Kitty band-aids out and lines them up on the side of my bathtub. Annalise gets scared when she sees the red bio-hazard red disposal unit where we store the used needles so that we can return them to the hospital (because it reminds her of when she got a flu shot). Amelia hands me the band-aid when I have finished the slow burning injection so that I can remember which side I put it in on so that the next night I can use the fleshy part of the other leg.
The crazy thing about this week is that during most of it, I was on a high. I started out on Monday at the “MORE Reinvention Convention” - an event sponsored by MORE magazine where stylish women in power suits kept asking me where I got my hair cut. Ha! (“It’s a wig” I would whisper to them as if I were letting them in on my secret and laugh.) I was the guest of my friend Geralyn Lucas (former 20/20 producer who wrote the best-selling “Why I Wore Lipstick to My Mastectomy”) whose book title pretty much sums it up. She lay the ground work a decade ago for us young breast cancer patients who still wanted to feel pretty and look sexy through this ugly process. She taught us to fight back against a disease that does it’s very best to steal all of your femininity and beauty. Within minutes Geralyn had worked me through the crowd and the indomitable Pam Stevens, who had started at America’s Talking, worked as a booker at Fox, then for Larry King, then at the State Department and now heads communications for the Komen for a Cure folks, gave me a huge hug out of nowhere. Before we knew it we were brainstorming about how to do more with Komen in Israel where many women have the same propensity for Triple Negative as I do (and let’s not forget the young African American women in this country who have a 3 times greater likelihood of getting Triple Negative than even young mothers like me.) Boom - then I turned around and there was Louanne Rourk, the National Director of Look Good...Feel Better, who I was scheduled to have lunch with the next day. Nobody could get a word in we were all talking over each other and so fast. Next week I am meeting the folks from Under Armour to help them design caps and upper body camisoles for chemo and mastectomy patients. Perhaps we’ll add a zipper because I am told it is a good number of weeks before you can really lift your arms and put a shirt over your head again. Under Armour has a “She’s a Fighter” campaign and they are also designing gear for the military so that when they deploy they have “Under Armour” to go with their “Body Armor.” The same concept works for breast cancer patients. It is the marriage of the two things most important to me. The synergy is beautiful.
From the MORE reinvention convention I had to dash from the lunch where Mika Brzezinski was interviewing Anna Quindlen to get to Lombardi in time for my mammogram. I promised Geralyn a picture of me putting on my lipstick in my hospital gown as I prepared for battle. As I was changing in the set of stalls that are as open as a locker room I could overhear eight women sitting in a horseshoe awaiting their mammograms. They were already in their hospital gowns tugging them closed in an attempt at false modesty. It was the day after the Oscars and I could hear from behind my curtain one woman explaining the story line of “Precious”. “You needed to be in a strong emotional space to see it.” Not me. The other women were talking over each other. I stepped out and smiled to myself and said to them that I felt as though I had just stepped onto the set of The View. They laughed.
The leader of the group who was talking like a minot bird because of her nerves - throwing out questions for the group to consider - said she hadn’t slept the night before her mammogram - never does. Was so scared they would find something. Again, I had a secret smile as I scanned voraciously the literature on the different kinds of flap reconstructions. She was speaking, assuming that we were all living in fear of finding that lump. I was in a different place (they couldn’t tell I guess that my hair was fake and I had no eyebrows. “I have breast cancer and I can’t wait for the mammogram to see how much the tumor has shrunk,” I said proudly. Talk about being a skunk at a picnic. What they didn’t realize that I did is that the tall elegant African American woman seated across from me smiling beneath her baseball cap probably also was going through treatment. I could tell by her perfectly drawn eyebrows, but she didn’t speak up. It’s like once you’ve had botox, you know who else is in the sisterhood because you know the tell tale signs - the squinchy three or four wrinkles that bunch on the person’s nose when they smile or laugh. She gave me a knowing half grin from under her cap. I spoke for the both of us and rallied the troops about why mammograms are your friend.
I held my orders (for the scans). They had the tell-tale health insurance code at the bottom - as did all of my blood work requests - 174.9 handwritten in ballpoint ink. It is the code for “she has breast cancer.” There was a 40F in the right hand corner of my other paperwork - 40 years old and female. That’s me. A biblical 40 years - that’s when I got my diagnosis. Everyone else I know spent the year planning which island or spa they would invite their girlfriends to celebrate this milestone that they dreaded (turning 40). I somehow never dreaded 40 - Luke was my 40th birthday present - a present to myself from myself. That’s all I had ever wanted. Instead I got 174.9 (and that isn’t my post pregnancy weight. Not anymore.)
Then I thought of the women who aren’t in the US getting this diagnosis. Greta told me about when she travelled with Laura Bush to Saudi Arabia to raise awareness about the importance of mammograms and how the women there can’t get a mammogram without the permission of their husbands. And since most of them aren’t allowed to drive, you can imagine how many actually get mammograms each year. Then a few weeks ago, I had lunch with my friend from Pakistan, Ahmed Rashid who wrote the best-selling book on the Taliban. And he said, “Darling, are you really going to reconstruct them - can they do that? In Pakistan they just give you two plastic ones to stick in your bra.” Like the pregnancy belly that they give you to try on with a velcro belt to see how clothes will fit at Pea in a Pod.
So I guess my reconstruction options aren’t all that bleak. The scars will be my war wounds, like a Masai coming of age ceremony. (They look about the same and just as violent.) And besides I already mourned the loss of my breasts last weekend. (I am sure I am out of tears.) And I have already chosen the color of the lipstick that I will wear to my mastectomy. Thanks to Geralyn.
