Still whirling

Tasmanian Devil, by Kevin Trotman on Flickr, licensed under Creative Commons
Tasmanian Devil, by Kevin Trotman on Flickr, licensed under Creative Commons

I think I may be past the worst of the steroid withdrawal, but I’m still feeling the crazy energy, the gregariousness (God forbid you run into me grocery shopping on a Monday morning), and the not letting one single thing slip past. It makes it hard to get to sleep at night. I take my cocktail of Ativan (as I have learned the cool kids call it), Benadryl, and a couple melatonins and feel my head getting heavier but still – working working working. I need a brain cutoff switch. I should be grateful there is no such thing, of course, but I’ve wanted to invent a new product forever – why not that?

Luckily this morning I put that crazy energy to good use. While grocery shopping, I saw a new load of pastries coming in and snagged a couple of concha rolls, one chocolate, one vanilla, for a coffee break with Rosa (not her real name) who was at home cleaning today. My whole reason for shopping had been to get more spray cleaner for her to use, though, and I forgot that until it was time to check out. Luckily it wasn’t busy so I snagged that. Nothing, not a thing forgotten. I got the groceries home and waited until Rosa could take her break. I made us some decaf con leche and we had our good talk. My Spanish was much better this time, two weeks later. And it reminded me of Mom and our cleaning woman, Lucrecia (may she rest in peace) sitting at our kitchen table eating lunch together for an hour. Lucrecia liked to gossip a bit though – Rosa is not that way. She’s a very positive person who’s had very negative things happen to her. I like her energy.

After our coffee break (remember, it was decaf, but the roll was sugary), I got on the allergy path. It was time to end Young J’s suffering. I left a message for his pediatrician. He’s supposed to go there next week for a camp checkup, but that’s the day of my next MRI and I read today that we’re actually in the middle of a pollen tsunami this week, due to the harshness of the winter and all the trees shedding pollen at once. The pediatrician called back and immediately recommended an allergist. She didn’t know whether the Flonase I snapped up at the drugstore this morning (because it was actually in stock – the allergy aisle has been basically plundered for a week) would actually work better than what we’ve been using. I just want him to stop suffering. Stop digging holes in his already-stinging eyes.

Oh thank GOD. I am looking out the cafe window right now, and I see an umbrella open and a possibly gathering rain. I didn’t actually think that would happen today. We need a really strong, deluxe city-wash kind of storm. I hope we get one. I don’t even mind getting soaked on my walk back from the cafe as long as my laptop survives it.

I wound up unfolding my latest health tale over the phone to Young J’s pediatrician, because they’ve sort of been following my story. By the time I got done explaining my latest news, Dr G said, “I honestly don’t know why you called in the first place!” It must be odd, to be a medical practitioner solidly in one corner of a field and suddenly hear all these details about what is going on in a totally different neighborhood. I was glad my news was good and hopeful. Obviously, I hope it stays good.

I called the allergist, who takes our insurance, and made an appointment for tomorrow morning. Tomorrow morning! I couldn’t believe it! What doctor in this city has availability that soon, and during a pollen tsunami no less? More luck, more luck, more happy luck. I felt even luckier when I called our insurance company and heard we’ve met our deductible for the year already (I SHOULD F-ING HOPE SO). Young J, your deliverance from suffering is at hand. In the meantime, come straight home from school today, scrub your hands and wash your face… and for the love of all that is holy, keep all the windows closed, my love.

Weekend update

I had a glorious Mother’s Day. There was a lot of chocolate at the beginning of it. I was shaking after a bit, and it wasn’t steroid withdrawal. You gotta do what you gotta do. I ate all the chocolate. My double cappuccino was decaf. Thank you J, Young J, Young A, for making it a perfect day.

It became a less perfect day when we headed out to the campsite where the kids will be going to day camp this summer, for an open house, and after 90 minutes Young J’s seasonal allergies flared to crisis mode. I’d been having such a good time with Young A (they split the group by age), watching him run around with kids he knew from school and kids he didn’t know yet. I introduced myself to the proprietor of a cafe chain that J and I very much enjoy, and praised his decaf beans effusively. (His kid is going to same camp.)

When we reunited with J and Young J, my heart sank and my head started hurting and it was all referred pain. Isn’t that what it’s called? I was in physical pain for my son. I never had seasonal allergies. J did, as a kid, and keeps insisting to Young J that he just keep his hands behind his back and not rub his eyes. That isn’t exactly working, or comforting. I wish I could do some kind of voodoo shit, squirt breastmilk in his eye (none left), find some magic herb that would make it all better. He’s got continual nosebleeds from the antihistamines we give him, drying him out. I’ve got to do better. My week is pretty wide open. I will fix this for you, Young J. Because I’ve got the cancer in the brain under good control, actually. And I looked at the Weather Channel’s seasonal allergy forecast for the next three days and it makes me want to keep you home from school and under the shower constantly. My poor, sweet love.

In other, happier news we celebrated J’s grandfather’s 103rd birthday yesterday, and the celebrations keep getting more and more over-the-top awesome. I think he was exhausted by it, but we certainly had fun. Our family wrote him a song cataloging events from the year he was born (yes, we mentioned the Titanic in passing). J’s cousin’s family went over the top with a gifting to all in attendance of foods that have been around since 1912. I couldn’t believe the variety. From Morton’s Salt to Hellman’s Mayo to Goo Goo Clusters (which they ordered specially from Nashville) to Life Savers to jellied cranberry sauce. It was a panoply of 103-year-old treats. I wondered if the SunMaid raisin girl and the Morton Salt Girl maybe knew each other.

Also my brother G announced a project yesterday which will earn him his own blog post this week. It’s something awesome, generous, and will be very exciting to the people involved. More to come when I figure out how to write about it anonymously!

To give a new reader the sense of the range of this blog, I’ll leave you with a few cultural tidbits to chew over.

I thought of this Emily Dickinson poem tonight. And I like that I thought of it. If you are the type of reader to read a line like “I felt a Funeral, in my Brain” and start freaking out because the person who suggested you read it has cancer in the brain right now – then perhaps it is not for you. If you like to think metaphorically, enjoy.

And now I’ll leave you with two YouTube supercuts as bookends to my state of mind just over three weeks ago, contrasted with my current state of mind.

April 15:

May 10:

It’s been that kind of time. I have no doubt things will continue along the Owen Wilson/WOW path. Because that’s immunotherapy for you.

The other day I ran into my neighbor R who’d been in the dark about my entire ordeal for the past two years, and she was the perfect person to tell this story to. She was jaw-droppingly amazed by what I had to tell her about my treatment plan. So, I think, still, am I.

PS I briefly considered tonight getting some cheap business cards printed up because giving out the address of this blog is getting tiresome. Some phones autocorrect it to “lillies”. I need to move it over to my newly registered domain (thanks and smooches to J), but I did for a second think of using this free design:


Yeah, no. Couldn’t stay away.

Galata tower on board, by Sinan Yüzakli on Flickr, licensed under Creative Commons

I know I said I’d shut up for a bit. But I’m on a long car ride, the kids have eaten their pb&j’s and are busy looking for wildlife overpasses, and something amazing just happened. Again. Yes.

I haven’t had to call the doctor all week. I’ve really been feeling great. But today, at dawn, I woke up with a bad neck ache. I took Tylenol and got a little more fitful sleep.

Later, I tried calling the answering service, imagining tumors rapidly proliferating all the way down my spine. I knew it was much more likely I have muscle soreness from tapering off steroids, which happened last time too.

The service told me the ER was covering all weekend. That would have been the most unproductive call ever, with a resident who might not even know what immunotherapy is. (That happened last fall too.)

So I take a chance – I send an email to one of the nurse practitioners, and guessed at the address of the other one. I told them I knew this wasn’t protocol. But I needed some reassurance. I didn’t truly expect a reply. And we needed to get on the road for a family function.

As we pass from Staten Island into Jersey, my phone rings. RESTRICTED. It is Dr. P herself. She tells me, “Nurse Practitioner R is at her brother’s graduation. What’s up?”

I keep thinking there is no possible way to love these people more, and then suddenly there is another way. “Yes,” she said, “it’s the steroids. If it keeps up you can come in for an MRI next week.”

“And hey,” she says, “I’m just doing paperwork today. It’s good to talk to somebody.” Then she has a big coughing fit, and calls herself Typhoid Mary.

Get well soon, Dr. P.

A little break

Another day of transformation, by Desiree Cooper (taken with permission from Facebook)

It’s the weekend, and I’ve pushed hard all week to turn this place into a present-day media entity of some sort. I’ve learned a lot, I’ve lots more to learn, and I’ve definitely got to add all this stuff to my CV.

But – and I hope you will forgive me for a little silence – I have GOT to manage my rest better. I managed a 12 minute nap this afternoon – and I know this because I set a timer for 20 and woke up when 8 was still left.

I may not post until Sunday night. I am feeling fine and you shouldn’t worry at all. There is some value in shutting up for a while!

And of course Sunday is a special day for me – the boys made me turn my back as they produced my gifts from their backpacks and put them on a shelf to not be touched until Sunday. I will not peek, because I promised not to.

Morning update

I camped out at the other cafe from 9 a.m. Was scheduled to meet T there at 10 to talk poetry. But first, met a fellow school parent and caught him up on my illness. Then, my long-lost friend J from the gym came in. We caught up and I saw latest pics of her delicious toddler. (We also talked gamma rays, because she is a physicist.)

She leaves and I drift right into a conversation with a blogger who’s had a hard week. I tell her I’ve had about three hard weeks. And all of a sudden I am meeting a new person – something that isn’t supposed to happen that often when you’re my age, or so I’ve read. But my cancer gregariousness knows few bounds.

Then while waiting for T to arrive I read more poems from my friend’s newest collection. They are arresting and after reading three I decide I need to save them for a place where I can hyperventilate after reading, without anyone fearing I’m having a cardiac episode.

T shows up, buys some yummy treats to share and shows me a beautiful dragon story/parable/dream she has just written. To me it seems like a fully-formed children’s book, lacking only illustrations. I bet she’ll do it, too.

I show her my hip hop lyrics which need much tightening up. Much. I can’t be telling my entire life in this one song – much better if I just focus on the drug names and making fun of them. Yes. To work on later. This weekend, maybe, although this weekend includes a trip to Allentown PA to celebrate a 103rd birthday (J’s grandfather) and of course, Mother’s Day.

I finally leave the cafe and amble up the block and remember my toenails. They are scary enough the boys have started to show concern. I cross the street to the fancy place I’ve never tried and there is no waiting. Suddenly I’m springing for the full spa pedicure. Today there have been two articles circulating on nail salons, one informative and historical, the other deeply disturbing.

My own feelings are mixed. I hate service providers who are so clearly in a subservient position and taking care of something truly gross, my feet. I have the feet of an 80 year old, thanks to a genetic predisposition to bunions, which forced me to stop running. I once overheard a pedicurist talking shit about my feet in Spanish (she didn’t know I could understand) and while I put her in her place, I also knew she was right.

My last pedicure was in October, getting ready for perhaps the last wedding we’d attend until our kids get married. Our friends J & H were getting married, and I had to have good toes. So I submitted myself to the process I enjoy about as much as minor surgery.

I look back at J & H’s wedding with such fondness. I had an excellent time there, seeing some people not seen in a decade or more, and I was hyped up at the start of my treatment and still feeling good and amazing, someone who had actual cancer in my lungs and you’d never know it! How we danced. How we hit up the photo booth, once even with a borrowed baby. It was a singular night, and it was walking distance from home, and there was nothing at all wrong even though I had cancer.

This morning I looked at the remaining cracked red polish on the tips of my snaggle-toothed big toenails and knew something needed to happen. I hope the boys like the color I chose. I do.


Teachers. And Nurses.

Seeking the Light, by Michael Taggart on Flickr, licensed under Creative Commons
Seeking the Light, by Michael Taggart on Flickr, licensed under Creative Commons

I’m spending a lot of time on social media (if you hadn’t noticed). Soon I will need to come up with some ground rules to get off of social media from time to time. But it’s been an immersion week for me, I’ve learned some mad new skillz (still honing others), and I’m energized.

On social media you get to find out when it is the week or day to appreciate certain types of people. And this week, I discover, is both Teacher Appreciation Week, and National Nurses Week. At this particular time in my life, I cannot express my esteem for these professions highly enough. But of course, this is a blog, so I have to try.

This week, and every week, rain, shine, sleet or endless sleet, the teachers and support staff at my childrens’ school are there for them. They are there for us. They are there with hugs for Young A when he’s scared because Mom is sick. They are there to coach Young J through preparing for his first standardized tests. My kids bring challenges to a classroom. They are inattentive, sometimes spacey, they don’t always come when they are called, usually because they are too busy reading. The patience and love with which they are met, the respect they receive, and the tremendous knowledge they gain, every day and in every possible way, springs forth from these amazing life forces that are their teachers, therapists, counselors. Whom we have seen working late into the night, and emailing us early in the morning. Tirelessly. Gracefully. Because they love our kids every bit as much as we do.

I have admittedly felt a bit lost the past three weeks. Rug pulled out from under me. The steroids practically gave me a personality transplant and launched this blog into outer space. I needed some grounding. And guess what? I returned to my teachers this week. I sent a few emails into the distant past this week – to reconnect and say hello to writing teachers, whom I remembered with such fondness. I needed them to know, not just about the cancer – but that I’ve been writing! At last! And I heard back. And they remembered me, and were kind and compassionate and happy to hear from me.

(Having worked for years as a librarian, on the periphery of teaching – or engaging in teaching with means to very specific ends – I have had occasion to hear appreciation from students I worked with, years later. They have told me I was a good librarian. Personally, I think they remember my jokes. And that having a librarian who made jokes made it easier for them to ask me for help.)

But now I need to pay homage to nurses, because it is their week too. And here I cannot claim the depth of experience that I have with teachers. I’ve been a lucky person, healthwise, my entire life. I did not experience any protracted illness as a child – nor did anyone in my immediate family. I did experience the depth of compassion that nurses could give during end-of-life care for my grandparents – I remember thanking my grandfather’s nurse for attending his funeral. “I loved him, too,” she said. But really, for most of my experience with them, nurses have been largely intermediaries, the ones who gather the data before the doctor comes in and tells you what you’ve got.

When I gave birth to my first son, the labor nurse was much better than my OB/GYN at coaching me through an unexpectedly short Mack truck-style labor. With my second son, I was lucky to work with a nurse midwife, and I gained new insight and respect for that corner of the field. She coached me through an eleven-hour labor that had me literally begging to leave my body, it was so grueling. (I also lucked out because I now count that nurse midwife, S, as a friend.)

When you enter Cancerland, you suddenly gain access to and knowledge of an entirely new paradigm of nurses. I know I have. The nurses in my melanoma surgeon’s office took the time to ask how you’re doing, and they’d listen. The radiation oncology nurse consoled me when I sobbed because the awful burn on my back was taking forever to heal (and because it is a teaching hospital, I was also dealing with two residents in the room who hadn’t aced a course on compassionate care yet, and stood there staring while I sobbed).

Since metastasizing (I mean, since my cancer did), I’ve been under the care of a medical oncologist, Dr P, and her unparalleled duo of nurse practitioners, K and R (and for a brief time, Research Nurse C, until I was dumped from the research study for “flunking” the drug).

I’ve written about them a lot on this blog. Mostly, the laughs we have. And the warnings they give me. And the way they make fun of me when I deserve it, like when I get all excited and eat avocado salad when I’m clearly headed for a giant immunotherapy-induced showdown with colitis, and I make myself sick as a dog.

I looked up Dr P’s bio on the hospital website one day, and I discovered an amazing thing about her. That she is a nurse too – that was her undergraduate degree. I instantly knew I was dealing with a very different type of caregiver, and in that moment also understood why the nurses she hires are so different.

I’ve learned a lot in the past two years, and perhaps even more than that in the past three weeks. Nurses! Teachers! None of you are being paid what you deserve. You take our pain, hope, fear, and longing home with you every night. And you bring light and good and smiles into what can be very dark places.

Thank you.

Midday lie-down

I had another busy morning. I sat at the cafe for a while with my laptop and for once I was doing stuff and did not feel like a fraud. But I was working on a flyer to try to get our block party (a month away and very far from being planned) going. There is such a lack of civic engagement on this block (though there has been a petition circulating about a speed bump). I feel like in the past few weeks I’ve become one of the block “types.” I’m just around a lot, with plenty of time to talk to anyone and pet any dog. It’s nice. It’s weird. This has never been my function in any society I’ve been a part of. (Except maybe my dorm in college?) So… why not try to go all roid rage on the block party, see if it actually happens this year?

Bad timing for the roid rage because I got this today:


A pill cutter.

I’m down to 1.5 doses a day. Yayyy! Oh, the spray bottle? That’s to put water in to spray my hair and reactivate hair product when I take off the hats I’m wearing everywhere these days. Thank you to my all-things-hair guru, A, for suggesting it.

I’m home and should have napped but had a phone call with a counselor from Young A’s summer camp, to get acquainted. Also, naps will be harder during the day because:


They had a lawn. They had kids who played on it. What the hell are they doing with it now, paving it all over?! All I know is it involves a lot of sawing and drilling. I hate napping with ear plugs in. So I’m going to need to keep knocking myself out for a while. White wine in the afternoon, the heavier stuff at night.

All of this could be much, much worse. I am aware.

Evening out

No, sillies. I’m not having an evening out. I’m even-ing out. Today was my last day on two steroid doses – tomorrow I’ll go down to one in the morning and only a half in the afternoon. Damn. Forgot to buy a pill cutter at pharmacy earlier. I need more steroids to remember this sort of thing. These pills are tiny and I’ll never manage on my own. My hands tremble a little, but it’s getting better.

This all came down like a bolt from the blue. And, as I see on the calendar now, a mere three weeks ago. I keep thinking it’s been months. On tax day. That’s when everything went to shit again. (Figures.) But what a reversal again in three weeks.

In other drug news, I’ve reached the end of my starter bottle of dabrafenib, which as you may recall I was “gifted” at the beginning of my treatment. Its label was partially torn off, because it had belonged to another patient (whom I am fairly sure I was told has survived). Tonight, I start my very own bottle with my own name on it. Legitimacy!

We’ve started working with a home organizer. J struggled very hard to not honor our appointment with her this morning, and I bared fangs, but he came through, and there are bags and bags of old electronics and crap on the way out of this house. I took my first unmedicated nap in weeks while they worked. Then she spent an hour with me. Exhibits A & B:


I’ll be sleeping much better next to Exhibit B tonight. I’m sure of it.

J needed to do some work in the afternoon, and we don’t have a sitter to pick up the kids from school on Wednesdays, so I had to do it. First Young A, from his after school art class. He told me about his new teacher who started today, and will be working with him an hour a day to improve his social skills. Over a cupcake, he assessed that his new teacher is “blonde, about 42, and she sure likes to boss me around!” I think she’ll do nicely. In another completely random rose the universe has lobbed at me, I made a new friend at the cupcake shop. We have all kinds of things in common, and she’d just recently moved here. The extraordinary coincidences are becoming commonplace, almost.

Then we went over to Young J’s after school soccer class. The last time I really watched Young J play soccer, it was classic ADHD. He was playing goalie but gazing up at clouds, the ball rolled into the goal, and he cheered for the other team. I didn’t mind, I would never mind that – we aren’t particularly sporty folk, and if you haven’t guessed, I happen to very much like people who defy expectations, and maybe sometimes let people down. Because what is more human than that? Today, he was goalie again, and I saw him tracking the ball better. He stopped a couple. He didn’t stop a couple more. But he was enjoying the game, the air, his friends, all of it.

I had a cupcake for him, but it was close to dinnertime. It takes precarious handling when Young J is this exhausted. He is in school until 4, and an extra hour of soccer, on top of seasonal allergies, can make him melt down pretty handily. I had a plan, though, and it helps Young J if you have a plan. I offered him either protein or a banana as soon as he got home. Some ice water. He ate the banana. Young A settled into the armchair to read himself a graphic novel that is probably way beyond his comprehension, and I sat with Young J to do math homework. It’s been weeks since I did – J or the sitter have been. I saw he has progressed to division. I was nervous. We had some tense moments. His body was exhausted and wanted to curl into a ball. I didn’t yell. I was firm though. And after a bit, he picked it up again. He started solving division by turning it into multiplication first. I got to see his mind working, almost like one of those hand-crank music boxes. What a mind it is. He plowed through math, I didn’t bother with spelling (he’s a bee champion in the making, I think), and he practiced his Hebrew reading and did another worksheet in Hebrew. He has one chapter of a book to read for tomorrow. He can do that after breakfast. What a kid, my kid.

I got some pretty lovely gifts today – one friend’s Kindle book and another’s new collection of poems. And I’m finally in a state of mind to read again, so good timing. All the books I wasn’t reading are cleared off the nightstand. Except Farmer Boy – Young J, you and I have a date. Whenever you get back from being out on your scooter, that is.

I always sing this to myself when I’m having a good day. Now you can too. Magical things are happening in this world.

La vita è bella… ma anche non troppo

It’s been a day. Putting yourself out there on social media is more time- and soul-consuming than I’d ever imagined. And because I continue to do this anonymously, I’m running up against some cross-platform integration issues. Anyone wise and can help me around them? It’s nothing I can’t just copy & paste between networks, of course. But I’m trying to learn everything at once on less than 100% brain capacity.

The morning began peacefully. I enjoyed a long chat with S at the cafe. I told the cafe’s resident published novelist M that I hope one day I can have a real, live writing date with her there. She’s been camped with her laptop there as long as I can remember.

As I spoke with S, a woman approached me with a note. She’d seen me in the neighborhood, and also at the cancer center. She was making an approach. I was so amazed and so grateful. All this time, I think I’ve been avoiding making meaningful connections with other patients, as though I could exist on this weird immunotherapy island until I am rescued. All I do on the island is blog, though. The past couple weeks I have been relishing the most wonderful human connections, meeting friends, talking with them, and (thanks to being on half the steroid dose I was last week) actually listening to them talk, too. I’ve learned a lot about my friends. I’ve learned how much I appreciate them, too.

Last night I was mentioning something about my medicine to the kids. I can’t remember why, I didn’t just bring it up randomly. But I did use a phrase I hadn’t used before. I said the medicine was “saving my life.” Young J looked a little strange. I may have repeated the phrase. And then it dawned on me that I have at no point told my children that I have a disease I can die from. That has never seemed like a productive thing to say, and I’m benefiting from a treatment that has so far shown such success, it just didn’t occur to me to tell them. It’s bad enough I’m inflicting on them a level of anxiety and stress I never, ever endured in my own childhood – why clue them in that people die from cancer?

I don’t know if he dwelled on it long, but – you guessed it – I did. I decided that I was every bit as bad as Roberto Benigni in the wretched Shoah movie he made, Life Is Beautiful. I remember going to see that movie with my cousin when it came out. I was full of anticipation. I loved Benigni’s work before that point. But the movie sickened me. My family connections to the Shoah are too close to be able to take a movie like that at face value. My cousin and I left the theater and it became very apparent immediately that we had each seen a different movie. She was charmed by it. When she learned I was not, she turned on her heel and walked away. I walked the other way down Houston St.

It’s a little heavy, implicating myself in perpetrating fraud to get my kids through this tough time. But at the end of the day, a day spent tugging social media every which way to see how it might work for me, a day spent not eating enough and certainly not taking the nap that would have easily come if I’d only let it, that’s where I am.

I got a package from a dear friend across the country this afternoon. Her son (who is the same age as Young A) made me the most beautiful worry doll, with red hair like mine, even. I’ll share it with you, because I can’t show the kids, so they won’t worry. Thank you, dear, sweet S and Young S, all the way across the country.

Worry doll, by S.
Worry doll, by S.