Initiate: shed inertia

Family Time, by Alex Loach on Flickr, licensed under Creative Commons

I’m having another one of those days where I can’t get moving. This time I blame a wicked hangover from the ONE beer I drank last night.

Last night I ventured out to a reading some friends were doing on the Lower East Side, discovering the J train as a super fast conduit to that part of the city I rarely visit anymore. I had good in-person conversations with people I mostly converse with via email. It was a good night.

I’m worried about my alcohol intolerance. Giving up caffeine was one thing, but I never intended to become a teetotaler. I guess I should commit to having a nightly drink until my tolerance is rebuilt. That sounds quite exhausting, however.

Yesterday I did a lot and the more I did, the more energetic I felt. I even moved the car for street cleaning at midnight when I got back to the neighborhood. Today, I have accomplished exactly two things. One and a half, even, because I’m waiting for a phone call back on one of the things. There is a teetering pile of dishes to be washed. I now have 45 minutes before school pickup begins. Time for a nap.

You can’t fix stupid

?! by Ian Boyd on Flickr, licensed under Creative Commons

I called Nurse Practitioner K yesterday, because my hips and legs and back were all quite sore. Plus I felt like I was coming down with something, so I had spent most of the day in bed. That preventive step (plus chicken soup and a really nice chill evening with the boys) seems to have sent the cold or flu or plague packing. I hope.

She told me, now that I’m off them, that the dark side of steroids is they can cause muscle deterioration. She asked me questions about the pain. She said, “Well, it doesn’t sound like cancer.” (Good to know.) She recommended stretching and exercise to strengthen the affected muscles.

When I finally went to put my rain boots on, to wade out into a rainy and windy Nor’easter to pick up Young A from school, I reached into the other boots I’d been wearing for a few days, in order to transfer my orthotics to my rain boots. That’s when I realized I’d been wearing those boots without orthotics, for days. And walking quite a bit in them. So all of the muscle pain I’m feeling may have nothing at all to do with steroid withdrawal, and everything to do with my shoes. I don’t think there’s any medication for that.

I went back to the gym today. I used a foam roller on my hips and it was magic. Then my awesome teacher M showed me a new thing she’d been doing for hips – pummeling them lightly with the ends of two dumbbells. I did some of that and it felt great too.

Dumb and dumbbells. It’s time to stop living symptomatically!



Air Drop of Humanitarian Aid Delivery to Port-Au-Prince, Haiti, by Beverly on Flickr, licensed under Creative Commons

We’re having the worst kind of Nor’easter today: a rainy one. No relief in sight. There may be two inches of rain before day’s end. I wish we could send it somewhere else.

I enjoyed feeling well for about five minutes before getting that woozy, about-to-get-sick feeling yesterday. J again had to cancel his basketball plans, and go grocery shopping instead. When I am finally out from under this endless streak of sickness, he will finally get to play basketball every single day. (Like it or not!)

Today I feel less woozy but still not quite well. My hips are sore. My back is, too. I did some ill-advised asking of Dr. Google regarding steroid withdrawal symptoms and it freaked me out. No surprise there. Everything feels like a symptom. It takes very little effort to turn it into one.

The best thing I can do is go back to sleep, so I’ll give that a try. The kids encouraged me last night to sleep with my trusty old teddy bear, so I did. It wasn’t bad. He’s a good chap. I hugged him to my chest and remembered sleeping with a newborn that way. (I got nostalgic until I remembered that was the only part of the newborn period I actually miss.)

Flying visit


We woke up super late today, for those keeping score of our Mondays. The unrelenting grayness in the sky coupled with the kids tiptoeing out of their room and not getting into immediate squabbles lulled us. (It may be time for us to consider setting an alarm, honey.) In spite of this, we managed to get out of the house in time, even with Young J on the injured list. He slipped and fell at a party yesterday, and may have sprained his hip. Lucky for him, he was able to ride his scooter to school. It’s easier than walking.

I lay there willing my body to move despite soreness. I accompanied Young A to a birthday party yesterday and its location made it hard to access by bus, so I walked and he scooted, almost a mile each way, the way back up a steep hill. It suddenly occurred to me I had a checkup early this morning with my melanoma surgeon, Dr. S. It’s a formality, at this point. Something I should have been doing as a completely healthy person. And in that sense I am – I’m so over cancers that are only skin-deep. I’m more complex than that. I filled him in on my November ordeal, he told me I seemed completely fine and that I looked well, which is important. He did not make any of his signature jokes, which disappointed me, but maybe he saves that for people who are really screwed.

On the way out I waited at the reception desk to wish Quentin, my buddy, a happy new year. I wanted him to know he wouldn’t be seeing me but that it was okay. It’s my small way to take care of the people who care about me. In the elevator on my way up, I rode with a nurse who was coming in to work. I realized after a moment she’d been my infusion nurse, the day I got the Remicade that fixed me. I said, “Hey! You were my nurse! I’m doing great now!” She said she was so glad to see that. And I thanked her. Yesterday, I sent the melanoma team two boxes of fancy pears (to counter the choco-apocalypse I saw in their office the other day). I am looking for ways to say thanks. Because despite the looming uncertainty of the scan, which won’t be resolved for almost a whole month, I feel – finally – fine. And the people who got me there – medical personnel, caregivers, cheerleaders and supporters, readers of the blather posted here – deserve to know.

After my appointment I went for a fancy, late breakfast at a place right near the cancer center which I hadn’t gone to before. I ate a frittata which was accompanied by some salad. SALAD. I didn’t realize it until my first bite that this was my first salad in a month. It was a good one. Minimally dressed, some slices of fennel mixed in, subtle and delicious. I couldn’t stop eating it. I am so happy to return to plant-based eating. All the carbs and protein have been fun, but balance is better. I crunched my salad gleefully, possibly eating it (as the Italians like to say when someone is eating too eagerly) like a morto di fame. Well, guess what? Not so long ago I nearly was starving to death. So get over your etiquette, and if you love me, bring on more of the leafy green stuff.

Stage lights

Tonight Young J and I went to Carnegie Hall to hear the Orpheus Chamber Orchestra. This was our second time going, so it’s now an annual event. Young J saw a mailing I received about an upcoming Orpheus concert last December, and lobbied hard until I agreed to take him. It went fine, except he wasn’t quite heavy enough to keep his seat unfolded so there were multiple Paddington Bear-like moments (minus the marmalade sandwiches).

This year, he had gained the requisite amount of weight, so the seat was no problem. Instead he seemed to be running afoul of the exceedingly strict ushers, who freaked out when I let him go to the railing unaccompanied to look down at the rest of the theatre. I knew he wouldn’t fall, but they didn’t. Also they seemed to be worried about him running up and down the stairs. (I wasn’t.) I took him with me to the restroom before the show, but at intermission they stopped me and said he was too old to use the ladies’ room. I had to wait outside the mens’ room, trying to see when he came out, but unsee the mirror reflection of the men at the urinals. Lovely. Also, this year, like last, the paper cones at the water cooler all leaked and Young J and I giggled, remembering how the same thing had happened last year.

Tonight’s program included cheery, pastoral Grieg, stately Bach, and exuberant Mozart. There was also a new piece, a commission by a young composer named Anna Clyne. I skimmed the program notes and saw the piece was sort of an elegy for her mother. I decided not to dwell on that, instead focusing on the unusual music and how I could find something in it to connect with. I mostly failed until the third movement, which was called Lavender Rain, and which she composed on the anniversary of her mother’s death.

There were rising and falling glissandi, it seemed very dramatic, and I closed my eyes for a moment. Not dozing, just seeing if depriving myself of one sense would sharpen the others. When I opened my eyes, the stage lights looked dimmer. I frowned. I worried my eyesight had suffered permanent damage from the steroids or some other element of my treatment. And then the lights continued to dim, and I noticed small lights attached to the music stands. This was intentional and I suddenly found it tremendously moving. The light ebbing as the piece continued, the musicians fading into blackness, the small lights on their stands like beacons bobbing in the ocean. I hadn’t brought any tissues so I just let the tears slide down my face while I willed myself not to make any specific and unhelpful connections between what I was seeing and hearing and anything remotely related to my situation.

When the lights came back up, Young J seemed curious, but not at all surprised to see my tear-streaked face. He knows me by now, knows how easily I succumb, and that it was only a matter of time before I was moved by the simple fact of attending such a beautiful concert with my firstborn, in a hall as plush and velvety and vast as the inside of a plush, velvet whale, as he grew more and more sleepy and snuggled up in my lap waiting for the tympani to come back in.

(By the time we left the ushers loved him.)

I’m free!

Hot Air Balloons - Mont Saint-Michel, by Nicolas Raymond, - Licensed under Creative Commons

I popped my last, minimal (2.5mg) dose of Prednisone this morning. I’m ready to restore some order, to stop being sleepy, stop medicating my headaches with high doses of sugar, and get back to eating my long-lost vegetables. The only vestige of my November ordeal is I haven’t taken up caffeine again, and I’m not planning to. It will make fasting (before scans or on Yom Kippur) much easier. I do still drink coffee. I have begun my quest for affordable and good-tasting decaf beans.

I sensed a strong undercurrent in that WSJ article about cancer super-survivors is their uniformly positive attitude. The interviews showed people who seem unafraid. I feel pretty much the same. I was telling a friend the other day that maybe part of this is, I’ve never been much of a long-range planner. It never occurred to me before that this could be a positive. I’m focused on January 5 and trying to visualize as much tumor destruction as possible happening inside my lungs until that day.

I’m not focused on things like, “OK, immunotherapy may give me another ten years.” Because… in what universe would that be even remotely long enough?

Support (pt 2)

I didn’t know I’d been waiting for it but I really have been. Yesterday’s Wall Street Journal ran a long, detailed story on immunotherapy for melanoma and lung cancer. Included are video interviews with long-term survivors of melanoma and lung cancer who were treated with immunotherapy drugs (like the one I had, and others being considered if I do need further treatment).

I have admittedly been very remiss in seeking support for myself and my family in the past few months. I scared myself off from visiting Gilda’s Club by imagining that my showing up there, feeling well (as I was before things got really bad) would be akin to showing up at a Weight Watchers meeting when I want to lose 15 pounds and everyone else in the room wants to lose 100. And then, suddenly, I was too sick to go anywhere. I rationalized that taking my kids there would expose them to the true, evil nature of cancer, by introducing them to kids whose parents are worse off than me (or even dead). My kids are still so young – I haven’t even found a way yet to speak to them about Eric Garner, or Ferguson, not to mention global anti-Semitism or the climate. So laying a heavy trip on them, one that is very directly connected to me, a constant and (as the past few weeks have proven to me) stabilizing force in their lives, doesn’t seem fair or right for us right now.

As for myself, yes, I enjoyed and benefited from the sessions I had with the social worker at the cancer center. I noticed when I was there this week that she runs a support group for those living with melanoma – but as is typical of me, I neglected to note when it meets. I continue to reject the identity overlay of melanoma patient as permanent. (The overlay is not even Mylar, it’s filmy as onion skin. Or made of that packing material that dissolves when you put it in water.)

So a friend sending me a link to that Journal story was the best thing to happen (other than the delicious baked ziti she also brought us this week). I got to hear from My People, but I didn’t have to engage in dialogue with them. Given my newly-discovered propensity to be a bit of an ass when it comes to cancer conversations, and my “empathy fails,” I think this story is the best kind of support I could receive right now. People all over the country are dealing with the same type of thing, and they’re surviving and even thriving. What a gift. Thank you, science.


Struggling with her jacket ... by jinterwas on Flickr, licensed under Creative Commons

I’m in transition. From steroid-addled scribbler to civilian with – maybe – a touch of cancer. (But still, a Sagittarius.) I’m lost in translation. Young A has stopped flipping his jacket like a toddler, and now gets into a fury when he chases his errant jacket sleeve around and around himself, like a dog whose tail forever eludes him. I try hard not to laugh. I try hard, at other times, to laugh. It’s good for the kids to see me laughing (not at them but with them). Young J gets furious when our conversation shifts to the 7 times table. There isn’t a way to turn it into a joke that I have found – at least not yet. I’m relearning how to sit at my computer instead of just using my phone, but the piles of papers on my desk sometimes make me flee, crawl back into bed. I have 25 minutes to prep chili ingredients and it’s going to happen. It can’t not happen. The boys were promised chili for dinner, and there tends to be hell to pay when my dinner promises are broken. Eating is serious business. It’s the only business I know right now. I’ll get out of bed now and prep, anticipating the hugs I’ll get at dinnertime.

Avoiding the hook


81:365 - Baited Blacks, by Nomadic Lass on Flickr, licensed under Creative Commons

I had a joyous “home”-coming at the cancer center this morning. It started with me getting there by subway, under my own power. When I got to the station I realized what a steep grade the stairs are there. Getting to the top felt like rock climbing, in my attenuated, sedentary state. Still. It didn’t kill me.

Just inside the door, I waited for Quentin to be free so we could say hello properly. He had a lovely Thanksgiving, and so did I. He engaged me in conversation just long enough, it felt, to be reassured I wouldn’t be returning there in a wheelchair anytime soon. Maybe my haircut reassured him. Maybe my non-pallor.

I made my way up to 9. Phlebotomist B greeted me warmly, with only three vials of my red stuff needed this time. As became clear, I have been dumped from the research study I had previously been enrolled in, because I “flunked” the ipilimumab portion by having my gangbusters immune response to the drug. (Hey, at least I got the week of radiation that was also part of the study up front! Score!)

Phlebotomist B told me about his Thanksgiving – his favorite holiday, he said, because “it is only about food, family and friends.” He is from The Gambia, so in addition to turkey they had other typical dishes he told me about. I love hearing about immigrant Thanksgivings, since my family’s is, also. After he’d finished the blood draw he told me how sad he had been to see me so sick, and how happy he was to see me well again. I thought I might cry for a moment, but right then Nurse Practitioner R and Dr. P passed by the room and saw me and I did a little chair dance for them. They also looked relieved, and were so happy I’d gained some weight back. I said I’d need access to a confessional in order to disclose what I had eaten over Thanksgiving. They laughed, and said they were happy I’d been able to eat.

Nurse Practitioner R did an exam – it had been a while since I’d been poked and prodded – and declared my belly soft and my bowel noises regular. This was all good. I mentioned that I’ve been having intermittent headaches after eating, and it was unclear whether that was connected to the steroids or not. It didn’t seem like a big deal, at least at that moment.

I waited around for my blood work to come back, and made a plan to meet J for lunch (now that I can eat again, this is my great reward, because he works very close to the cancer center).

The bloods were fine. Nurse Practitioner R called in a doll-sized portion of steroids to the pharmacy – I’m going from 20mg tablets over Thanksgiving to half of those the past couple days to 5mg for the next two days, then 2.5mg for two days, and then GOODBYE CRAZY PILLS, HALLELUJAH! Nurse Practitioner R told me of her upcoming trip to a conference in Rome (her first) and I racked my brain trying to think of some quick useful tips. I told her to avoid restaurants with laminated menus written in English, and to try to find restaurants with a verbal menu. (That alone should get her pretty far.)

Finally, the big news: I’ll be having a scan on January 5. A CT scan, as they have done before. But this time, because of my headaches, I will need to follow that with an MRI of my brain. (Damnit, I knew those headaches might be trouble. I guess I’m still glad I mentioned them?)

I went back to see the admin person to schedule the scans and saw a teetering stack of boxes and boxes of fancy chocolates and cookies on her desk. I had been thinking of a way to thank my team, and I think I realized seeing those that I’ll need to send something a bit different to make any impact. J suggested fruit. That sounds like a plan.

I went to meet J at a pocket-sized French chicken restaurant we’d been to before. The last time I’d had a chicken caesar salad that was delicious. I was going to order one today, but decided to hold off. I haven’t had any fresh leafy veggies yet, and Nurse Practitioner R asked me to please continue to refrain until I’m off the steroids. Given that there is now an end in sight to those, I decided to hold off. I’ll cook the bunch of kale I bought so optimistically yesterday (hoping to make my favorite raw kale salad). Even cooked kale may be a bit of a risk. I can’t believe how much I’ve missed greens. Once they are again permissible I will probably binge on them for a week.

So I drowned my sorrows with some really exquisite mushroom macaroni and cheese, and a piece of roasted chicken. The place is so tiny, there is only one small communal table by the door. When we sat down, a man was sitting across from us eating a chicken caesar salad. I coveted it. I tucked in to my meal, which was a reasonable consolation prize, and chatted with J. I told him about my visit, the outcome, and how exhausted I felt. I’m not sure whether the guy across from us had been listening the whole time, but he decided to chime in right then.

“Excuse me, I overheard you are tired. Are you working two jobs?”

“Uh, no. I am getting treated for cancer.”

Apparently this man had two conversational triggers – one having to do with working two jobs, which probably explains his choice of opener, and the other having to do with his wife, who battled breast cancer for ten years. We were trapped and there was going to be no escaping.

“You know, you need to have a lot of faith. Faith in God. That is what will get you through.”

I really didn’t like where this was going. And I wasn’t even half done with my lunch. So I needed to head him off at the pass.

“I don’t think that is the case for me, sorry. I do have a lot of people who are praying for me. And I appreciate it. But I am putting my faith in science.”

He wasn’t really sure how to keep going in that vein, so he shifted to his wife’s story. It sounded nothing short of agonizing. Ten years of surgeries, chemo, even some kind of surgery on her neck to keep her head attached to her spine.

I felt for her, for him. But this isn’t my trajectory, not by a long shot. I thought perhaps of asking about his accent (it was pretty clearly Persian), how he’d come to this country and when – the usual questions I, as an immigrant, ask other immigrants. But I also felt strongly that I didn’t want to encourage him. I felt annoyed at his intrusion.

By the end of our meal we’d heard about his two jobs, the way he’d had to support his family and be both mother and father. This was a man in great pain. He wished me well. I wished him comfort in his grief. I wish I could have felt better about it, but it wasn’t what I needed at that moment.

I guess my take-home lesson from today is, no, you don’t have to tell everyone you have cancer – particularly if you aren’t prepared to listen to their narrative in an empathetic way. The world is sadly filled with people who have their own cancer narratives, and you draw them out at your own risk.

A bad case of the Tuesdays

day line II, by Sammy Conductor on Flickr, licensed under Creative Commons

Turns out the Monday I was dreading yesterday was waiting for me today. Our first mistake was relying on the kids to wake us. From time to time they sleep in, and this morning was one of those times. Young A made it through the night without any visits to us, a very welcome innovation that I hope he appreciates – I know I did. Unfortunately, when the kids sleep late, they are brimming with energy, and for morning purposes I prefer them more groggy and pliable.

My problems actually began last night, when J came home from work. I’d told him it was going to be fine for him to play basketball after dinner, meaning I would be solo with the kids through bath and bedtime. I did mean it when I said it would be okay. But it turns out I had already spent my battery for the day (going grocery shopping on my own for the first time in a month), and had not left time for a nap, and by the time J got home I was in no shape to spend the evening alone with the kids. It felt awful to make J cancel his plans. I dozed on and off throughout the evening.

I thought I was further along. The progress isn’t linear. And now it’s raw and cold out. On the bright side, back to the cancer center for a checkup this morning, and I’m getting there by subway and walking in to the building, instead of being wheeled in. I have to seize signs of progress where I find them.