Day One, today. Or was it Day Zero? In any case, it was kind of a busy one, but at the same time there seemed to be a real lack of momentum.
I had to take Young A for an evaluation to see if he needs any support at school. We walked through the bitter cold, but he was dressed to the ears in his coat, snow pants and boots, so he was chipper and excited to be out of school in the middle of the day. He disappeared into another room with the psychologist and his lunch box, and 90 minutes later I had to coax him to leave, since he was in his glory, swimming in a sea of wooden train tracks. He’d eaten all of his lunch.
I spent those 90 minutes with the social worker, answering – or trying to – social history questions about Young A. Does any parent of a child who is nearly five remember when that child first spoke two or three word phrases? Especially when it’s not a firstborn child? I sure don’t. (Mom, I can finally forgive you for not remembering what my first word was.) I couldn’t even be sure if A chews with his mouth open, but I don’t think so. I did mention the cancer, since it affected Young A when I was sick.
I had a meeting at the school later in the afternoon, about a project I’m working on there, so I had about two hours to kill. I totally squandered them on things that don’t really apply anymore – bad eating and excessive bed rest. It was so cold I told myself I’d get in bed to just warm my feet up and take a 20 minute nap. I wound up not actually sleeping but just lying in bed surfing the web on my phone. Net gain: I fell asleep while watching TV tonight. I need work on getting upright again. I hit the gym once this week, planning to make it a habit, but my schedule made it impossible. Or rather, I convinced myself it was impossible.
I’ve fallen into some bad habits or patterns of behavior. The scale doesn’t lie, so I shouldn’t either. This weekend – a kid-free one, as J and I belatedly celebrate our anniversary – doesn’t seem like the optimal time to be turning over a new leaf. I’ve heard from some people that I should give myself a break. But part of me feels like that’s exactly what I’ve been doing all these past months, and it’s time to get tough. I’ve succeeded before – giving up all sugar for a month at a time, losing weight, upping my exercise routine – so there’s no reason it can’t happen now. I should do it, even though it seems like a huge cliché to make these types of self-improving resolutions at this time of year.
But… didn’t I just achieve my resolution for this year, and in record time?
Murderers murdered cartoonists in Paris and escaped. The Frederick News-Post put itself on the map.
A woman in front of me at the supermarket this morning wanted to buy a pocket pack of Kleenex and the store didn’t have any for sale. I took my brand new one out of my bag and handed it to her. She said, “I hope someone does something nice for you today.” I told her I hoped so, too.
When we arrived at the cancer center, I saw my buddy Quentin. He was wearing a mask, as was another one of the greeters. I asked why and he explained that he hadn’t had a flu shot, so he had to wear it. I didn’t question him further. He said he’d had a nice holiday and also been to Barcelona. Good for him!
Upstairs, the receptionists both wore masks. I haven’t had a flu shot either so I wondered if I should ask for a mask. I didn’t.
I had to wait an excruciating hour or so to get the results. Once I did, I asked to see my scans.
Yeah, it’s hard to understand and the tumors aren’t where you’d think they are on the image, but the point is: THEY SHRANK. Just like they were supposed to. The largest ones measured over a centimeter before and they are now measured in millimeters, very few millimeters. My immune system is kicking their little tumor asses. I hope your immune system is never tested in this way, but if it is, I hope yours is as ninja-like and unsparing as mine.
I said “tumor” in an Arnold Schwarzenegger accent, and Nurse Practitioner K (who was so happy to give me good news today since she’d been the one to break the bad news in September) laughed. Dr P came in and suddenly I found myself with the nickname “The Tumornator.” I’ll be back… (in twelve weeks, for a new scan.)
J and I called our parents to share the good news, then left the cancer center to have lunch. I had been postponing my date with my most-dreamed-about Japanese food, chicken katsu don, and we went to what turned out to be one of the best places in the city to get it. I ordered a very large beer that took me ages to finish, but was so satisfying. I ate and ate and ate (free refills on cabbage salad) and smiled at J and squeezed his hand and received many messages of support via social media.
When we stumbled out of the restaurant and walked through Midtown I felt like a tourist. Snow was blowing around like the inside of a snowglobe, and there was very curious light. Sadly I couldn’t capture the light just right, or the whirling snowflakes, in my photos.
(Personally, I’d want no part of a heaven that included Rev. Moon.)
Passed this jewel box of a firehouse on 43rd Street.
Now, off to do the perfectly routine thing I scheduled for this afternoon, and get a haircut.
A list of things I did today to keep myself from going crazy and from wishing this day didn’t exist:
– Took the kids to school.
– Went to a class at the gym.
– Caught up with a friend from class who’s been much, much sicker than me.
– Had tea and a long talk with another friend.
– Made for lunch the most awesome kale omelet, ever.
– Watched Young A and two school buddies scoop up all the snow they could find from the sidewalk outside school, and throw it at each other.
– Hooked Young J up with some friends to go sledding with.
– Watched as Young J managed to get through his homework and practice piano even after all that sledding.
– Sat at piano and played some Satie while my family quietly puttered around behind me.
– Read White Snow, Bright Snow to Young A at bedtime.
There. Now I won’t ever wish this day hadn’t happened. It was worthwhile.
I’m recuperating from my big day of scans. Despite the relative non-invasiveness of these procedures, the very fact of having them done is enough to sap me of all energy. I had the foresight to tell J I didn’t think he’d be able to make his basketball game tonight. (I felt badly, but not as bad as if I’d said yes and then made him cancel.) He moved the car, made dinner, put the kids to bed, and went grocery shopping instead. Good man.
This morning it took me forever to get moving. I stayed in bed until the last possible minute, then had to rush. I wasn’t nervous, mostly just annoyed that I had to start the week this way, now that the kids were back in school and the house was quiet and there was no need to plan fun outings.
When I got off the train at 33rd Street, I had to face the steep stairs up to the sidewalk, or, as I have come to think of them, El Capitán. Today I actually managed to fly up them without difficulty, but failed to catch a crosstown bus to the hospital, so I then had to take a long walk in the biting cold.
Everything in the hospital seems like a vector of disease transmission, confirmed the one time I made the mistake of using the restroom on the lobby level. The proliferation of hand sanitizer bottles on every surface is no comfort to me. The waiting area for imaging is permanently jammed, so much so they issue you a pager, just like the Cheesecake Factory. The wait is just long enough to be irritating, but not long enough to make you feel worthless. There is no Oriental Chicken Salad on offer.
Today they seemed to be enforcing separate men’s and women’s areas in the gowned waiting room, for which I was grateful. Something about seeing mens’ naked legs with just dress socks and shoes makes me profoundly sad. I did not need to shed my pants, since I was wearing my scan-friendly yoga pants. I wish more people thought through what they wear when they’re having a scan done. It isn’t that hard to plan ahead!
I got settled in my gown and started in on my bottle of berry-flavored barium sulfate. You’re supposed to drink a cup every ten minutes, but I’m such an impatient overachiever, I usually finish it much sooner than that. It’s so vile the only way I can deal with it is by making it disappear as quickly as possible. Somewhere in the middle of drinking the guy called me in to place my IV. I didn’t cry today and didn’t even flinch that much. I’ve been through worse, at this point. I mean, I’m not about to watch or anything, but I can handle it.
IV in place, I went back to the waiting room, where a most irritating man had taken up residence on the women’s side, along with his wife. He was annoying the crap out of me, beginning with when he came in and they gave him a locker key and then he totally forgot he had one and was bothering me about where to put his clothes, and his gown was gaping open and DUDE FIND A NURSE TO HELP YOU. With his wife there he was a little more relaxed but they were talking the whole time. When they called him in for his scan, his wife stood in the middle of the hallway looking lost. I thought she might try to go in the CT room with him. Another annoying thing: People who do not know the rules, and do not seem to care to figure them out. (Yes, I was using my phone in the gowned waiting area, in defiance of posted signs, but I wasn’t: a) speaking to anyone on it, or b) taking photos of anyone in a gown.)
The CT was fine, not difficult, and they tell you when to breathe. I listen to the prompts (a man’s voice with lots of hubbub in the background) and try to decide if it’s live, or a recording. “Breathe in / breathe out / breathe in / hold ya breath,” goes the poem. After the machine releases you, a millisecond before despair, you get, “Annnnnd breathe.”
Halfway through the scan they inject you with contrast. The CT contrast is apparently made from shellfish, which is something I don’t eat. I imagine if I did eat shellfish I’d get the same weird effects I get from the contrast – a metallic taste in my mouth, and a sudden warm feeling spreading through my pelvis, as though I were about to pee. (I think I will continue avoiding shellfish.)
I mentioned to the technician that I’d be having a brain MRI directly after the CT, but I didn’t know whether I would need an IV for it. At the end of the CT scan they forgot all about checking if I still needed it, and removed the IV. To be fair, I could have reminded them too, but I was too anxious to get out of there and walk eight blocks to my next appointment. I’d been fasting since 8:45 and it was almost 1 p.m.
I walked as quickly as I could to the MRI place. The midday sun couldn’t penetrate the long shadows of the buildings around the hospital. I spent about 15 minutes in the waiting room, filling out a sheet full of “no’s” – they wanted to know if there was any metal inside my body, anywhere. (I had no idea you could even have so many metal things inside your body!) There were some mobiles suspended from the ceiling that looked vaguely seasonal (pinecones and bare branches) but also a bit amateurish – I wondered whose kid made them.
I learned I’d need another IV, so I resigned myself to having both arms stuck today. Luckily the nurse who placed the IV sympathized and found a way to get the IV in the arm that had been used already. The good thing about being a generally healthy cancer patient is, your veins haven’t collapsed. They work when they need to. I’m grateful for that.
I didn’t need a gown this time since I wasn’t wearing anything metal. I was led down a corridor I never imagined was there (the place seemed to expand as you walked through it) and deposited in a chair outside the MRI room. It was a hallway that ended with a door to the outside, and it was damn cold. I wished I hadn’t left my coat in a locker.
As I rubbed my arms for warmth, a nurse or tech, or maybe just a random dude in scrubs who had wandered in from the street, asked if I was cold. He turned on some space heaters and brought me a gown and insisted on tucking me in under it, “just like my daughter, snug as a bug in a rug.” It was sweet, I guess, but also super weird, especially because he looked a little bit like a Ramone, or some other hard-living musician from the 70s. My comfort didn’t last long because no sooner had I been snugged like a bug, they were calling me in.
I hadn’t had an MRI before and I was a little worried. I am not typically claustrophobic but it does tend to flare up at random moments (like, say, when I’m stuck in a too-small dress or sweater in a fitting room). I decided I would try to keep my eyes shut as much as possible, breathe deeply and try to “enjoy” the experience (meaning try not to lose my mind). I had an emergency bulb to squeeze if I needed out.
I was given ear plugs and then earphones, and selected classical music (I’m not sure what Pandora was playing but it seemed like Classical Lite). I was warned the machine would be loud, but I wasn’t quite prepared for the feeling of a jackhammer all around my head. I tried to listen to the music through the noise. Unfortunately, when one piece of music ended, an ad came on at full blast and almost blew my ear drums out. (Actually subscribing to Pandora to get ad-free music would be more classy, perhaps I should write a letter.) I squeezed the bulb to let them know I needed the volume lower. They responded immediately to see if I was okay. Yep, I said. The music blared on.
I opened my eyes at one point and directly over them was a piece of the camera which had a small window that showed me my feet. Like a short-range periscope. I moved my foot slightly, to make sure it was my foot. That was stupid, but reassuring.
I squeezed the bulb a few more times to get status reports. I learned that 18 minutes and two minutes and five minutes all are about the same length of time when you are immobilized inside a big, loud machine. I thought perhaps I had what it took to be an astronaut, at least a movie one. I thought about my friend Sarah telling me about her first experience of an MRI, but then I was sad and had to think about something else. I thought the classical music combined with the loud beeps of the machine was slightly reminiscent of Stereolab.
And then it was over. I booked it to my favorite chicken place in the neighborhood, swallowed a salad as fast as I could, and jumped on a train, arriving in time to get the kids from school. I powered through homework with Young J, then turned on Netflix and collapsed. Apparently fatigue is a common side effect of an MRI, if only because the experience is so overwhelming to the senses. I’ve been lying down most of the evening, when I’m not drinking crazy amounts of water to flush the two doses of contrast out of my system.
Compared with today, going for my results on Wednesday will be easy. J will be with me. I won’t need to do anything except maybe tithe my customary three vials of blood to Phlebotomist B. And then I’ll get some good news. Right?! Good news!! Well, let’s hope so.
If you were undergoing a medical procedure tomorrow that would give you some very important information about an existential threat, what would you be doing today?
If you’re me, the answer is: figuring out how to smuggle three large bags of vegan popcorn, a twelve-pack of pareve cupcakes, ten mini bottles of spring water, and some empty cups, into a movie theater. And then escorting seven children (with three adults) across the West Side Highway, possibly in the rain.
(I started the New Year by composing a letter to myself that a website called FutureMe promises to deliver in ten years. Then this evening I went to see “Interstellar,” which involves a man leaving his family for decades to go explore the far reaches of space. And now I am glad I copied the text of my letter after I wrote it, and was able to paste it here, many hours later. Yes, this is probably cheating.)
It is January 1, 2015. In a few days you’ll find out if you are still growing melanoma in your lungs. And you will find out if you need any more drugs to treat it or if they’re just going to watch the tumors keep shrinking.
Maybe by the time you get this letter, the treatment for metastatic melanoma will be a kale enema. Or something you slip under your tongue like those homeopathic pellets.
Right now the boys are 8 and almost 5. Where you are, they are 18 and almost 15. How much scarier is that? Did Young J really grow to 6’5″ as forecasted? Is he still obsessed with boats? Is Young A still handsome and completely unpredictable? Did either of them pursue music? Do they still love to draw?
My main reason for writing this letter is to make sure you’re still alive to get it. This site lets you send things pretty far into the future but I’m setting it for ten years. You’ll be 53, and I sure as hell hope you found a job.