November 28, 2005
That, O Best Beloveds, means “Are you Hungarian?” in Hungarian, at least, according to my father, who taught me some bits of said language (his parents were from Hungary) when I was growing up. It does not, as it turns out, though everything else he taught me was correct, including the really filthy stuff. (Hungarian has the most swear words of any language.) I use it as the title because today, among many, many other things, I had a Muga (which is likely not spelled that way), a heart test to make sure my ticker can withstand more chemo, and I like stupid email titles, as you have likely long ago guessed.
My day began with me heading down to USC Norris, where I will not be having chemo even though it’s only twenty minutes from our house and I have to have chemo once a week, to have said tests. I stopped off first at the Breast Center, where everyone was delighted to see me until they heard the news (or as I put it “Stupid Dr. Waisman and his stupid tumor markers”), but again, all reacted the same way Dr. W did; man, this is a drag. Good thing it’s now instead of a few years ago. Even Dr. Silverstein (looking very well and healthy, which was a relief; he went through some medical stuff himself and we were worried about him), who was very very blue when I got sick the second time, was rather cheery about it this time. The nurses, who I adore, and the Center’s long time secretary all got into a huddle, declaring that at least one of their docs would be glad to be a “figurehead,” essentially doing everything Dr. W. said, and so I could have chemo there instead down in Torrance, if everyone could sort it out. They promised to work on Dr. W. for me.
Off to the tests. The Muga requires two injections, twenty minutes apart. I took one look at my arm and saw that my beleaguered veins had heard the news and hidden themselves from torment. “You aren’t going to get a vein,” I said to the nice young nurse, who tried anyway. “Huh,” she said, “I got the needle in there. Why isn’t there any blood? Maybe if I move it this way. Or that way. No. Hmm. How about this way?” I said “Ow.” And some other stuff. Failure finally admitted, another nurse came in and stuck me, even as I kept saying “Gang, I have to have a second needle stick for this test, and also some blood tests, couldn’t we just start a line so I can do all of it off this one stick and that’s it?” No, they said, but maybe for Stick #2!
To this end, a third nurse came in, and gave up on my double pinstuck arm, and went right for the hand, starting a line. Turns out she does the installment of the “pic” (spelling?) lines, which are the semi-permanent lines you get in your arm if you are having lots of chemo. In other words, my future. Given my escapee veins, and all. Except, it seems, one cannot bathe when one has a pic line. Now, see, I like baths. I take baths when I’m happy. I take baths when I’m sad. And you know when I take baths the most? When I feel sick. No way in hell am I going through six months of chemo without baths. It seems another option is a port, which goes under the skin and requires surgery and some kind of twilight sleep and leaves a scar, and the point is, I am right now feeling like no one is making any of this simple for me.
So I have the Muga, which should take twenty minutes, but takes well over an hour, because it won’t register if you have a funny heart rate and mine started at 90-plus. “You must have been anxious,” said the nurse. “Fancy that,” I said. And then a chest X ray (to confirm no lung involvement), and then it seems the lab downstairs was super crowded, and I needed to get to school, and so no blood draw, and the whole line was wasted after all. The line was removed, a big bandage placed on it, and when I got to my car, another patient waiting for their car said “Are you all right?” As well they should, because the bandage was soaked through with blood, and more gore was running down my arm. Pressure from bandage wasn’t enough to stop up the hole in my hand. I go back in and get cleaned up.
Off to school, and during the drive, Steve calls. I have to call Dr. W’s office, which I do, learning that I 1) get to have a phone conference with him “and he will call between 3pm and 4:30PM” (“but I’m in class until 4pm,” I say and she doesn’t respond), 2) need to have a blood test that day to make sure I can do chemo on Thursday (“But I just left Norris,” I say. “Okay!” she says brightly, “You can come down to Torrance and do it here!” I explain why that isn’t going to happen, and also, I’m in class until 4pm), 3) here’s my chemo schedule (which sucks).
School. All of this took up just enough time so I couldn’t get lunch as I had planned. (Have not thus far eaten anything. Cars, phones and needles taking up valuable caloric intake time.) Get one work boss on the phone, explain new dilemma: she’s sympathetic, no problem, work as much or as little as I like. Decide I have to leave class around break, which is near 3pm, in order to be available for Dr. W. call and to return to Norris. Break happens before 3pm, gives me time to talk to Prof about that paper of his I’m not turning in on time. Break is half an hour late. Collar Prof, tell all. He’s deeply sympathetic. “I know you have strict deadlines with the papers,” I said, and he interrupted. “That’s for ordinary circumstances. You have extraordinary ones. Please. Don’t worry. Don’t stress. Take as much time and as long as you need.” (You’d think a lifelong academic would know better than to say this to a student and a freelance writer.)
Break too late to allow time for snack. Back in car. Drive back to Norris. Dr. W. calls. I’ve already forgotten the chemo names (Steve has them), but I take one of them each of the three weeks, and it does something with blood vessels, and the other one happens on Week 2 of each cycle, and it’s a super blast of something related to Taxol. Side effects: minimal. Hair loss, yes, but very slowly (rather like last time, only maybe even slower). No stomach problems. No weird nail stuff. Some joint pain, maybe. Some high blood pressure, maybe. (My blood pressure is already so low they have to go into basements to read it, so I figure the worst that might happen is it will rise to normal.) Fatigue, maybe. I forgot to ask about weight gain, which is weird, since it’s my major obsession. In short, “This should be about 50%, if not more, easier on you than what you’ve done before.” This sounds too good to be true. He also says that all the studies with this combo have shown remarkable effects on people with breast cancer mets. Further, he’s been involved in a two year study of the breast cancer vaccine, which has similar wonder effects with breast cancer mets, and he wants me on the stuff by March or April. I told him that Susan, herself a fine doctor, wrote me that breast cancer is more and more turning into a chronic, but manageable disease. And he said ‘Look, I would be stupid to downplay the seriousness of this, but, yes, that’s right.”
Hearing all that made me so much calmer about everything. Hair, fatigue, symptoms, efficacy, professorial sympathy–all of it seems about as good as we could hope. Of course, at this point, I pushed it and asked AGAIN about Norris, and despite the overtures from the staff, he rejected it. Those brilliant doctors; they do like to be in charge. And hey, he drives through traffic every day on his mission to reduce breast cancer fatalities. All I’m doing is once a week for my own.
And so back to Norris where they didn’t have my lab requests, but they finally got them,and Lily the Wonder Nurse who Never Ever Misses the Vein jabbed my hand right below the nice hematoma that had developed from the day’s early fun, and it pretty much didn’t hurt and I sighed again, because if I were doing chemo there, Lily would start my lines. And the cafeteria was closed, and all the taco trucks were gone, so there went my plan for carnitas soft tacos. And so here we stop for additional NYC food porn, as I was reminded that we also ate congee and bbq duck at the felicitously named Yummy Noodles, and cannolis from Rocco’s, and chocolate cream stuff horns from a place on Mulberry Street, and profiteroles covered in chocolate mousse at Reggio’s.
And now it’s 5pm and I really should eat something.
On the whole, I wish that something were from Babbo in NYC.