Tuesday, February 16, 2010

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”


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."