Dans le tout petit trou
On aperçoit
La mer entière

My blogging tendency is long. Longer than long. I need to experiment with shorter form. So here is a recap of an unremarkable day, brief and to the point. (Except that none of my days are unremarkable, brief, or to the point.)

The morning: Banana bread with peanut butter. Children getting cantankerous as the days go on and I keep taking them to school as I haven’t done in months. I can’t work with their silliness at all. I shift the work onto J, and as soon as we leave the house, with the sun shining, they are perfect angels again. (And J gets to shower and emerge to an empty, quiet house.)

(Sidebar: I somehow was obsessed with telling Young J about social justice this morning. It started with zoo animals, moved on to police brutality and eminent domain, and I finally invoked a description of the Jews as am kshei oref, a “stiff-necked people.” It’s something he may have touched on briefly at school but it’s something that matters to me a lot, perhaps especially right about now. Stiff-neckedness, as a means of survival. Personal and collective. Yeah, I’m not sure Young J heard it all!)

Young A’s classroom has an “airplane” set up for the kids as they are taking a virtual plane trip to Israel today for its independence day. All the kids in blue and white. Young J’s ready to say goodbye at the curb to me again (but I did get to come inside earlier this week and see Spike, the adorable bearded dragon in his class). Young J already knows what he will order from the falafel truck tomorrow (a really good one, which will park right in front of the school). It’s a good sign he’s willing to try falafel. Note to self, he may be getting less picky.

J meets me at the cafe before we take the train together. We coffee up some more. He goes to work and I head to a checkup at the dermatologist, one scheduled long before the current crisis. In my bag, I have my steroids (in case I am still out at lunch time) and the anti-seizure drug they prescribed yesterday. My thinking is, if seizure comes on, I take pill which makes me sleepy, choose a subway, and take a nap for an hour. It seems to be a solid plan. (Perhaps the actual insanity of the plan is what keeps it from needing to be put into place.)

Get to dermatologist seizure-free. Long wait. Finally see doc and he knows what is happening and hastens to tell me about another patient of his, same brain lesions and drugs, who is doing great now. I like you, Dr A, always have. He checks me over, snips something to check (while telling me it’s nothing), and finally lets me just gab for a while. I am indulged by my dermatologist today.

I have some calls to return – the CVS pharmacist in Illinois has some drug interactions to warn me about. I call and stay on hold with Nurse Practitioner R for 25 minutes and she says it is fine, don’t worry. She laughs at my seizure-subway plan.

Where have I been on the phone? Out on the street for 35-40 minutes. It’s chilly today. But I’m on the block because catty-corner from dermatologist is my new eye doctor, the one with the droopy eyelid theory, and I want to send any notes he has to Dr P. I walk in there – obviously not a day the doctor’s in. Music blaring, smells of cleaning fluid, staff seem very relaxed. I ask them to send a fax. They are very cheerful but technically incompetent. Printer isn’t working. I ask to help them (because I have nothing better to do) and come back behind the counter and suggest stuff. Nothing works. The doctor also hadn’t written anything about the droopy lid, so I’d have to wait til tomorrow to talk to him about it. What I do, seeing an IT setup in shambles? I make a referral to J’s consulting business. I tell them he has worked with doctors and dentists before. They seem interested.

I stumble back out onto the street and stop at Sephora on the way to the train. I sure haven worn any makeup lately, but I know I’m out of makeup remover. I buy some, then some random Clinique eye thing, because it has SPF 20 on it so it must be helpful.

I get down to the train and a woman I have seen before in my neighborhood says hi, asks how I like my short hair. Her daughter is adorable and I play at guessing what her name is. Once we get on the train we wind up in a deep conversation and I tell her everything that’s going on with me, today, this week, this year. She doesn’t seem fazed. She listens. I smile at her daughter while I disclose the most painful things imaginable about my health. This is how things are for me, state of a random Thursday. Thank you, Adrienne, my neighbor, for listening.

On my way from the train to grab lunch so I can take steroid, run into another neighbor. He says he hasn’t seen me lately. I tell him. The five seconds flat cancer speech this time. He’s Jewish so I give him my Hebrew name. He’ll pray for me.

A slice of pizza in a bag. Home and scarf it down, swallow the pill, chase it with a liter of seltzer. It’s a living. That isn’t more or less than what it is.

When I was born, there were two older  brothers to greet me. They were 6 (G) and 9 (U) years older, so my sibling relations were different than those of many others. I wasn’t a threat. I was a girl, and I was cute, and when I got a little older, I was singled out for torture, but it was more psychological, not the physical torment I have heard about friends dealing with in siblings closer in age. There were tricks, like cutting boxes out of the TV Guide to make it look like Sesame Street was airing in the evening. Making me try Muenster cheese (my horror) if I wanted a yummy cherry drop candy, or, if I wanted to listen to a song, it was withheld until I completed some unpleasant task. Nothing permanently scarring!

You can see, then, that I had it pretty easy as a younger sister. My older brother, U, had great and fun ideas for outings, like rain walks. And he would come back from his illicit nighttime  forays into the woods with treasures for me. There were metal sculptures he and his friends made out of scrap metal mined from suburban lawns, which bore metal signs demarcating gas lines underground. They “collected” the signs, heated them in a bonfire, and called the results “globules.” I was given one, and cherished it. I had no idea it was made of stolen material by teens, who may or may not have been chemically altered. All of that awareness came later. I had a globule, and that was cool.

I was about 7 or 8 when U left the house for good. He struck out, first rebelliously, and then, more sensibly. He moved across the country for a number of years. We weren’t in close contact all the time. It was hard for him to stop seeing me as a kid. Took a while for him to realize I’d finished school and had a job. We were, simply, kind of distant.

Things took a turn again when he and his wife and their kid returned closer to the family fold. (Honestly, I never would have guessed that of the three kids in our family, me, the youngest daughter, would wind up living farther from my family than anyone else.)

U and I get in touch when we’re in town and wanting to get together. We love his family, their dog won us over to dogs when they stayed with us last summer. But we still don’t talk a lot. Life. Busy.

Then I got sick. Getting sick can affect a lot of people around you. Some in ways you’d rather not deal with (no comment), and yet some in surprising new and great ways.

I knew U was following my blog, was getting updates from my folks, but, especially lately, I’ve felt some urgency in his communication. He texted to see when we could talk, and I could tell there was something he really wanted to talk about.

It’s been a busy, weird week, but this morning, after a long time outside with my friend and his dog, chilling, I came home and got in bed. I had some chills. They later turned out to be seizures. But before I called my nurse to tell about this… I felt I needed to talk to U.

I don’t think we’d ever talked for such a long time. But even after all these years and these conversations, today’s is one I will remember for a long time.

I could tell that he’s been reading up here on the blog, and on social media. But what I didn’t realize is, that’s not all. He’s been reading everything he can get his hands on – about immunotherapy, drugs in development, the latest trends.

Not only that – he’s been paying attention to everything I’ve been writing about and mentioning, and he wanted to correlate something my eye doctor told me weeks ago – that I seemed to have a droopy eyelid – with the rest of the symptoms we now know as being cancer.

I was floored that I hadn’t thought of the connection before. I was floored that he had made it. He’s not an MD, doesn’t even play one on TV. And yet – out of love and concern and the need to do something while his sister goes through this – he found something valuable, important, crucial, which none of my doctors so far have done.

I am bowled over anew, every day, by the way love circulates in my life. Thank you, my brother, for being the latest shining example.

I screwed it up, didn’t I? It was the ice cream what brought me low. I couldn’t leave well enough last night. Even though J was beyond exhausted, I begged him to fetch me an ice cream. From the fancy store. Dear man, he’s never said no to me when it matters. Ice cream matters.

I finished my ice cream at 9:15. Usually my immunotherapy drug comes at 10 pm. Except, having read and memorized the label, I know I must wait one hour before or TWO HOURS AFTER eating to take it. I have been good, and decided last night to be a little bad.

J was exhausted. He went to sleep uncharacteristically early, and I brushed my teeth and tried to find something to pass time in the living room. I tried Netflix, settled on two episodes of a Ricky Gervais vehicle I am sure no one has ever heard of, that takes place in an old age home. I tried finding us a new spring blanket for our bed. I concluded that ice cream either needs to happen right after dinner, or stay as a nice image in the mind.

It was me and the clock and the wait, last night. It was, despite the general lack of digestive woes, a reminder of last November, the nights that never ended, until they did. I never want to live another night like that again.

Today my 6 am waking became 5 am. It may be a little rough there. I’m meeting another friend for coffee. I wish I hadn’t banished caffeine from my life. But the day brings its energy, and I want to do some balcony garden planning today, and BRING IT ON, SPRING. I’m thinking growing and tending some flowers should be the best revenge against death, drug regimens, devastation.

(It’s just that J may have to do all the planting & watering for me.)

This is how life starts over again.

You spend a couple days prostrate, unable to get out of bed except for meals (and this time around, meals are EVERYTHING and important and life-giving, not just bloody hell).

You spend a morning taking the kids to school, the biggest joy there is, and then get coffee with a friend and her toddler and give him the special tour of all the neighborhood toddler spots your own kids don’t want to visit anymore. It’s magic and the rain has stopped.

Of course, sleep doesn’t come, not all day, not even when you want it badly. But it’s beautiful out, warm and the backyard noises beckon (you don’t heed).

By evening you’re tired, but glad for the reintegration of the family unit. You sit and eat dinner, even if you only want salad (with the magical dressing your friend improvised). Later you sneak a bunch of potato chips as a coda, the kids not seeing.

While Young J works on practice tests for his first ever standarized test next week, you take Young A to the balcony. It’s dirty, not swept up for the season. But this is a nice time. It’s time for him to practice blowing soap bubbles again. Spring training. I have no agenda. Let him get dirty, sodden, dripped with soapy water. He gets it, after a while. We shriek as some bubbles escape the railing and we watch them circle the yard. I let him decide when he is done.

Young J has agreed to have first bath tonight. In a few minutes, we’ll be settled with Farmer Boy, which we’re in striking distance of finishing. I hope there will be at least one more scene with food – his favorite description. (Hopefully no more slaughtering of hogs. Although at least we don’t eat those.)

What do I want to say about all this? That I wanted it to happen. That I never figured it would happen so soon, normalcy (or at least a part of it). The kids are relieved by my presence. And they reassure me.

They tell me, “We have seen you laid low before. But you don’t stay that way. So, we don’t give up on you.” I don’t quite know how I’d come back, without them to make it possible.

Thank god that this is enough, and I have never had another pretext in order to be well.

Elizabeth Bishop.

I’ve written here about my mom before. I do, in fact, have a mother and a father. My father gets short shrift here. He’s not a social media kind of guy, and I am frankly not sure how he’d feel about all this attention, so I haven’t written about him a lot here. (You tell me, Pa, how you feel.) I also am pretty sure I missed writing to him here on his birthday. I’m sorry.

This doesn’t mean I haven’t been thinking about him, a lot. My dad had a pacemaker put in last week. He’s going through recovery from the procedure. And that isn’t even the first device he’s had planted in his body. A few years back, he had a device implanted which emits electronic pulses to interrupt pain signals. Which means he’s practically a bionic man. As a science fiction aficionado, I don’t think that’s necessarily a negative for him. Perhaps he likes to think of himself as a latter-day cyborg.

Thanks to my father, I developed under his careful tutelage an appreciation for the bizarre. I grew up knowing nothing different, it was just how things were. I remember very early on playing a game in the bathroom mirror with him, called “Who’s Me?” I think the point was to look at ourselves in the mirror and perhaps not really be sure if we were who we thought we were. There was also a family who came up in stories he would tell me. They were the Watkins family (our last name is not very close), but they all had the same first names we did. They were always in close proximity to us, perhaps they’d just been where we were, or were just about to arrive, but not at the same time. They were the Watkins family, you understand – not us!

This is ancient history, but only ancient for me – there’s so much more I could say about my father. The days of remembrance of the Shoah are not idle days for our family, but days we remember real, actual people to whom my father was close blood relation. My grandparents, my father’s parents, left Europe at the right time, as young adults… but most of their families did not. My father was alive, while the letters grew less and less frequent, and eventually letters to them were returned unopened. These losses, these murders, cast long, dark shadows on those who remained, an extended family that wound up scattered across several distant continents. My father’s life work in recent years has been to reassemble his tree. Every few months or years, another fugitive connection, a possible link. Every name, date, place of birth, counts.

I don’t think that these thoughts are far from my mind. My work is different. I’m not typically consumed with the distant past here, in this writing I’ve been doing. But I feel it is, somehow, related. There is the very fundamental feeling that documentation is important. I am not sure what I am documenting right now, but like my father, and his father before him, we are consumed by the need, the work, the effort.

When my grandfather died, a friend and mourner who came to visit heard me talk of my connection. I said I felt genetically connected to my grandfather, because we both had the need to write. Back then, I didn’t know what my writing would lead to. I didn’t know it would lead to a sort of act of self-preservation in the face of mortal danger. (At least, I’m hoping this is what it is. It may not be up to me to say.)

The mourner seemed to want to tell me, because she was a scientist and she needed to school people, that it wasn’t actually genetics. She wanted to be very clear on this, even though it wasn’t the place for a science lesson. How sad, I thought, years later, when I walked behind her family that was walking behind her own coffin (after she was stolen, too early from the world, by the cancer she researched), that she couldn’t just have comforted me then, and told me that I was right.

I’ll try to unpack this doozy of a week. This task is made more difficult by my speech/language issues, but I’m thinking I’ll just try to leave them in there, and if you’re lost, you can post a comment here and someone else can figure out what I mean. That’s what a team is for, people. Prop me up.

You may have heard the designation NED, which means No Evidence of Disease. What typically happens when someone gets NED, from what I’ve heard, is you get parties planned for you. It’s a cause for celebration, a rite of passage, people celebrating with you because you’ve made it this far and etc etc.

Obviously this is not my narrative. But perhaps, having been a reader of this blog for a long time (or a recent reader who has done some diligent and judicious scanning of old posts), you might have expected a twist. It does make me wonder, at times – do these plot twists happen in order to make for better writing? If I stopped writing this blog, would things get more normal healthwise for me? Perhaps an interesting experiment. But I simply have too much to express right now to stop the writing.

Monday last I had my scan, so I took the day off. It was pro forma, as scans go. Actually, better than that – I was in and out of there early. Instead of lunch, I wound up making an early brunch, then walked around a bit, waiting for an additional appointment with Dr S, my surgeon, who was seeing me for my followup checkup for something that happened two years ago, ancient history now. He still insists on seeing me, looks at my scar on my back, nods when I update him, but he’s just not my primary dude anymore. I don’t depend on him and don’t need him and can barely recall when I used to call his personal cell phone in the evening with questions, as he encouraged. That’s ancient now, two years. Seeing him is almost like meeting up with an old lover, something I also, by chance, did not too long ago. (Actually, doubly weird, because I just had a followup with Dr S almost exactly two years since our encounter. And I had that beer with an ex twenty years exactly after our last physical encounter. In both cases, though such different contexts, there is so much left unsaid… and it’s certainly not going to be said now.)

Anyway, Monday I was already feeling lousy – headaches, sleepiness. So I knew I’d bring that up on Wednesday when I came for my results.

I just looked at my calendar for Tuesday, just to remember, did I work that day? I did. The whole day. My calendar says I had meetings, with a student, then with my boss, and after lunch, with another student. I don’t really remember any of these, except I vaguely feel like I began a useless argument with my boss about something she had no need to argue about (and using the term “argument” even seems too harsh now), and at a certain point I just backed off. There was no point.

Because I send emails to the students while I’m meeting with them, I can now tell you that the morning one seemed interested in a book called Creating Catholics, another one called A revolution in taste : the rise of French cuisine, 1650-1800, and something called Vatel et la naissance de la gastronomie: recettes du Grand Siècle. The student in the afternoon got links to a few different social science databases, nothing quite that exciting.

I also had a lunch date that day, with the librarian I’m becoming friends with, but I failed to confirmed our date on Tuesday until I was already at the place, and soon realized she wasn’t showing up. It was a place I frequented when I lived up there, so even solo, I didn’t mind lunching there. Burger, fries. (I didn’t have my usual beer, though.) Halfway through the meal, I got a couple of frantic emails from my lunch friend, feeling bad that she got the wrong day. We decided on Friday as a new date. (Bad choice, turns out.)

My last meeting on Tuesday was probably over by 3:30 or 4. But my work day ends at 5, and even feeling the way I was, I didn’t feel right, just taking off early. I had seen an email about a foreign language learning software that the library was running a trial for, so this seemed like the perfect time to start learning a new language. I knew I wasn’t in mental shape to start something completely foreign, so I chose Brazilian Portuguese, similar enough to the other languages I speak, and one I’m familiar with from music I love.

Perhaps it was an early indication something was wrong when I took the pre-test, thinking it would let me skip a level or two, and instead only got maybe 60% right. Hmmmm. Maybe this wasn’t as easy as I’d thought. (Later, only much later, it occurred to me that learning a new language wasn’t perhaps the most intelligent thing to do right now, with my brain.)

I assume Tuesday night was more sleep at early hours. I had a half day of work on Wednesday, before my meeting with the oncologist at 1. Unfortunately that half day of work included a meeting with not one, but three students, working on an economics project, and they were coming to me with some late breaking data needs. This was the worst type of meeting to have – I needed to be on my A-game, prepare in advance, and instead I was slurring my words, forgetting them, trying to fill in with gestures. Somehow, I did manage to help them find two of the three things they needed but were not diligent enough to find themselves. The last one, I really fudged, tried to give them a few options and said as a last ditch they should tell their prof they were not able to find the data (but imagine that I took long to say this, with weird and maybe wrong words and some hand gestures). I know, now, that wasn’t my best day. I know there was an actual, physiological reason for this. But not that day. I chalked it up to nerves.

I left a little earlier than noon, and met J at our Japanese restaurant, where we had our triumphal meal after my happy news in January. I thought that eating chicken katsu don would steel me & heal me. Today, it was a little early for lunch, I smelled cigarette smoke on our neighbor, and on the whole, nothing was the way I hoped. I choked part of down my lunch. I barely finished the rice.

We took a bus to the cancer center. Quentin was there to greet me, I introduced him to J, but Q was still wearing his mask and it was somehow off-putting, distancing. Phlebotomist B was his usually charming self, but I certainly don’t think I was.

I passed Nurse Practitioner R in the hall before coming in, and she gave me some thumbs up and smiles that told me from her perspective, this would be a repeat of January – happy happy joy joy. Dr P also stuck her face in for a moment to do the same. But it was clearly after a while that this wasn’t the usual usual.

What did I tell them? I told them about the headaches, the fatigue, the constant need for sleep. I didn’t tell them I’d been falling asleep at my desk between appointments. And – as crazy as it sounds – I didn’t mention the language problems. As of Wednesday, I was sure it was just nerves. Nurse Practitioner R did a physical exam, and found nothing amiss in the old familiar parts, no lymph nodes involved, nothing odd.

They had me leave the place with promises to call if anything got worse with me. In my last attempt at getting something useful done, since I was at the doctor’s office, I insisted on getting an update on my condition to send to my primary care doctor, who has been in the dark for ages (except for what I’ve told her when I go to see her for a strep test and wound up spending a half-hour updating her in person on my cancer stuff). Finally, some medical paperwork to get to her. And it was going to be perfect, because I had actually planned to go see her later that afternoon. Something about these headaches and fatigue.

Instead, I canceled the visit with her. I wanted to go home and sleep. J was around that day, so I sent him over to my doctor’s office to drop off the papers (which would be outdated a day later), while I lurched home and got right in bed.

It sounds like I should have called in sick the next day. Yes, it should have. Instead I went – again – to work, because I had more meetings scheduled with more students, and no sleepiness, no fatigue, and certainly no language issues were going to stop me. When it comes down to it, after seven plus years of being off the career treadmill, I guess I’m liking it. It sure keeps from thinking about the fact I might have, I dunno, lesions on the brain? In case you need to know, my Thursday morning meeting with a student turns out to have been the econ meeting I just told you was on Weds (I had two meetings Wednesday too). I met with economic students first thing, then met this lovely sophomore who was just so great to talk to I somehow didn’t make it obvious I had no speech problems. At the end of our talk she expressed interest in libraries and I told her I’d be happy to bend her ear, but given that my degree is now twenty years old, she might want to speak to my colleagues with more recent credentials. I did not say, you may want to speak to someone about librarianship who perhaps does not have active lesions on the brain.

After my meeting and before my staff meeting, I called Nurse Practitioner R to let her know I was, actually, having speech problems. I had to leave a message. I went to my meeting, not really processing much beyond when my phone would ring so I could leave the room and answer. After an hour, it rung. Nurse Practitioner R said if I had speech problems, I needed to get an MRI at the hospital, preferably the one associated with them. I said, sure, I can do it tomorrow. She made herself plain. Today. Now.

I looked at my schedule. I had another student in the afternoon. Before that, after my staff meeting, lunch with a friend I’d been wanting to see in ages. I did the smart thing, at least smart in my addled mind. I went back to the staff meeting. I waited until it was done, so I could casually, as people walked out on their way to lunch, see if someone could take over my student consultation. Someone did.

Awesome! That left me free to have lunch! My last act as a reasonably normal civilian before returning to hospital/cancer/fear/deathland! I enjoyed it. I had my second burger and fries in the same week. I hope I was a good conversationalist, but my friend is an English professor, so she must have heard some things wrong. She was kind enough not to be blunt.

After lunch, back to the ER that I’d gone to last September when my lung collapsed after a biopsy, but before everything really went to shit. Again this time, the crosstown bus diverted and left me walking a long block. Again at the admissions desk I found myself speaking very quietly. At a certain point they realized I needed to be in there stat. It was busy, so I was on a stretcher, but sitting up, and not in a room because there weren’t any. At first that seemed like not a bad thing – if they park you in the middle of the corridor, sooner or later, they will figure out what you need so you can get moved out of the hallway.

You may be happy at this point to know that I don’t remember very clear details of what took place when. J came when I called, but I don’t know if that was before or after the CT scan and whether he left to give the kids dinner (at my behest) before or after my MRI. I know both of those things happened, and I had to take off all jewelry before the MRI, so I did give J my wedding ring. Sometime around 10 (J came back when the kids were sleeping and a friend came to hang out here), they finally decided based on the brain lesions that I’d need to stay overnight, upstairs, in the oncology unit. (Or was it the neurology unit? No clue.) J brought my stuff, but I told him to go home and get sleep, so an orderly packed all my things and took me upstairs. I was in a room with three others, and one of them, an older woman, was loud and annoying. I finally used my nurse button to complain when she was watching crap TV loud after midnight. She turned it off.

My night was lots of messaging on my phone, and finally, around midnight, fitful sleep. They were giving me steroids and anti-seizure meds through an IV, which may have interrupted my sleep a bit, but I finally plucked my contact lenses out and slept.

Except the neurologists had other ideas. At intervals known only to them, they would turn the light on and ask me my name, some dates, the president’s name, and then to perform some feats of strength. They don’t tell you how you do. That’s not your business. You just have to perform, whether or not they just woke you up.

In the morning, things were better. The day nurses are better. They actually have feelings. The food – which I wasn’t allowed to have the night before – was lovely and plentiful and they even fetched me decaf coffee. I was so grateful I even ate cream of wheat, with gusto, and about half of my very tasty eggs and hash browns. I couldn’t believe the OJ was not crappy Tropicana tank juice, but actually, real OJ, the kind we get at the food coop. While I was amazing at all of this, the food goddess came and took my lunch order. Nay, she DISCUSSED it with me, telling me about the different options and preparations. I finally settled on salmon, mashed potatoes, broccoli, a side salad, and a poached pear for dessert. (Just the act of ordering this delicious meal was enough – I don’t even really believed I’d actually have it.)

I met some foxy doctors, one Irish and the other some African descent, who introduced themselves to me as “medical doctors.” It wasn’t really clear what their roles were, other than being foxy doctors, and at this they excelled, and they laughed at my jokes. Later on they brought in an older doctor who did some more neurologist stuff, and told me he worked with Dr P, which to me meant, maybe my care was going to be transferred back to her?

The night before, I think the plan was to do gamma knife surgery on me first thing in the morning. But I think perhaps things changed when they saw how well I was doing at reciting dates and facts and kicking and pushing and all that stuff? All I knew was, the game plan seems to have changed. And perhaps I wasn’t entirely on board, because I knew what gamma knife was, and I wanted the lesions out asap.

J came mid-morning, after fetching my favorite croissant and then my glasses from the optician’s. Once I could see again, kiss my beloved, AND eat a spinach mozzarella croissant, I was ready for anything.

What I needed to get ready for, it turned out, was leaving the hospital and getting to Dr P, asap. In hospital time, asap means, in two to four hours. I got to eventually eat that lunch I’d been dreaming about since breakfast. But J was there, and probably starving, so even though I could have eaten the whole thing, I left him half. He scarfed it. He let me eat the salad – so perfect and with pomegranate seeds and red onion, and not one bad leaf, I missed the fact that there was a lemon pecorino dressing that would have just paired perfectly. Too bad it was hidden on the tray until too late. I drowned my sorrow with a poached pear – a real pear, with real seeds and stem intact. I couldn’t believe my luck at that meal. At that point, I honestly didn’t care if they kept me there until dinner, because I’m sure the turkey burger I ordered would have been sublime.

After lunch, I got dressed and waited for the nurse to come remove my IV. She did, and then with my business of putting my socks and boots on, I didn’t notice the bandage popped and my arm was spurting blood, everywhere. The nurse was sanguine, amazing, and got it taken care of. I loved her. She used the same nurse call button I got, but she got faster results. Gauze, bandages, cleaning supplies – all were there in an instant.

It was hours, but felt like maybe one hour or twelve, we were on our way to Dr P. “Cab?” I scoffed. No, I could walk. From 1st Ave to 3rd. How bad would that be? As it turned out, bad. I couldn’t walk very fast at all. I needed food. The chicken place we knew about observed the stupid break between lunch and dinner.

I suddenly decided I needed a doughnut, so as I entered the cancer center, J went to the next door Dunkin and got my dream, strawberry cream (and he got the special, chocolate cream, which is the special every day). I ate it after the medical assistant took my temperature, but before Nurse Practitioner R came in. I was obsessed with finishing my donut before she saw me. Not quite. She laughed, of course. (How could she not?)

Today Nurse Practitioner R was in charge. Dr P stopped in to greet me and reassure me, but she had a meeting to be at. (She runs the entire cancer center, when she’s not saving lives.)

So it was Nurse Practitioner R’s job to sell me on the treatment, and this is a job she excels at. No, I wasn’t going to not get the gamma knife surgery. But first, they’re going to give me another type of immunotherapy drug. One that penetrates the blood-brain barrier. Which also happens to fit the genetic makeup of the tumor that was in my lungs, which they took the liberty of sequencing last September, so they would have that in their pocket, if they needed it. They need it. I have the BHRAF mutation. So this drug is tailor-made for me.

Did she happen to mention this immunotherapy comes in pill form? No IV infusion this time. And they happen to have a half jar left over from a different patient (I am pretty sure I heard her say they didn’t die) and here it is and they just ripped their name off the label, that’s why it looks like that? And you’ll get your own dose next so make sure you use this coupon for $10 off, and they’ll send it right to your house!

Yes. Yes. A million times yes. This is why, for those have (with all the love in your hearts, I know) told me I need a second opinion, respectfully, no, I don’t. Yes, I was doubting a lot at the hospital. I won’t lie. But Dr P and her team are coming through for me, again, as they have before. I’m counting on them. I don’t think my trust is misplaced.

As far as the timing for this latest wrinkle? I honestly think it’s perfect, somehow. It’s what I’m meant to do now. I don’t mean that I welcome this crap. Or that I’m even happy about it. But if it needs to happen now, with everything else in my personal, familiar, and global scales? Who am I to say no?

I am just here to live. That is my whole point. To live, to live for my family, and maybe, when there’s a little extra time, to teach them how to live with this level of adversity. Be lucky. Find someone(s) who love(s) you and is your champion. Find the humor now, because that’s the whole point. And when it’s your turn to kick ass, kick ass – whether that means showing up at your appointments, or taking pills on time, or even sometimes just realizing, yes, it’s not right that you’re speaking funny, and you should probably get that looked at. Stat.

I’d been hoping to have noble obstitations of a long work, but it seems to be different.

The sentence above is the crux of the problem. I’m no longer laughing as hard about my colleague years ago who talked about Tarzan movies as her “childless wimps.” Because that’s me, now. It took an extra day for me to enable to acknowledge my speech problems, but I did. And they are going to be fixed. Apparently gamma knife is involved. Cool. Waiting to find out when, by whom, how long I’ll recover, and even how foxy the doctors are (based on the random sample this morning, PRETTY FOXY). My foxy J is on his way too, and I’ll feast my eyes on him while I eat the yummy croissant he is bringing, and I’ll see everything with my brand new updated glasses, which he’s getting for me from the store.

(I am also looking forward to the neighbor across the stall leaving at last, because her TV habit is making me batty.)

I’m sorry I don’t have much use yest. Please stake bye. (OK, I did those more or less on purpose.)

There was celebration, phone calls, relief. And then things that were not anticipated, the byproduct of my body (fatigue, sleep, more fatigue, more sleep).

I was hoping for a plain out celebration today at Dr P’s office. Certainly it seemed that way. In the hallway, on my way to an exam room, Nurse Practitioner R gave me more than one thumbs up and more than one meaningful smile. When Dr P came in later, more of the same. They were clearly ready to celebrate with me.

And I… just wasn’t 100% on board. Naturally, I am thrilled to have a result to my scan that is even better than the last one. I’m pretty sure today that I heard Nurse Practitioner R say about me what everyone longs to hear, “No Evidence of Disease.”

But I’ve had a couple bad weeks. Fatigue, sleepiness, and more things I didn’t even mention today to the nurse – gross tongue (yes, that is the clinical term, I’m sure), weird food aversions, and just today, mixing up words (or forgetting them altogether). The last one actually happened to me this morning at work, before heading to the doctor. It was scary.

To their credit, after getting over the fact that their star patient isn’t looking as good in person as she was on paper, they started to try to figure out why. I went to see my phlebotomist, B, to get another round of tests. I may need some drug – it isn’t sure yet if that’s thyroid medication, or – horrors – steroids (“A trace amount,” Nurse Practitioner R hastened to say, knowing how awful those were for me) that would make things right again.

I wanted things to be simple – good results, happy feelings, ice cream. Instead, I went back home and crawled in bed and slept until dinnertime. Yes, of course I am thrilled that there is No Evidence of Disease. It’s just… it’s feeling a little hard to rejoice, until my body and mind manage to catch up with what the paperwork says. I’ll get there. I hope it won’t take lots of drugs to get there.