I was in a hurry this morning. Lots to get done before I rushed out the door to the eye doctor. So I did not get to tune in to the annual reading of victims’ names at Ground Zero. Instead, while I waited for a cake I was baking to be finished, I read some of these. As always they made me cry.

As always, I am angry on this day. As time passes, I think more and more people tend to let go of their anger about what was perpetrated here. People want to move on. I find it useful to renew my anger. My feeling is, I don’t want September 11 to become something I can dismiss with a slow shake of my head and a sigh. It was mass murder, and makes me just as angry today as the day it happened.

This morning I had a new thought. I thought about those who were dealing with cancer or other illnesses when the attacks happened. How difficult it must have been – for them, for their families, for their caregivers. The overlay of something horrible on top of something else horrible.

I’ll try to keep my perspective on this in the coming weeks, when I have to deal with an MRI and appointments right by the UN, at the worst possible time of year to be moving around in that part of the city. It will be inconvenient. If we’re lucky, it won’t be deadly.

After a day or two of severe ear pain and no hearing – in the right ear this time – I’m finally on the mend… just in time for my left eye to start hurting and being a little irritated!

What this feels like, more than anything, is the game of Pong. The earliest version of the game, with the harsh beeps. The ball is pain, discomfort, unpleasantness, and it ricochets from one side of my head to the other. Now that I’ve had bad right eye, bad left ear,  and bad right ear, I guess it is time for the left eye to have its turn. I’m being proactive and already have an eye appointment for Friday morning. I’m getting good at side effects. (Technically, the ear thing isn’t meds-related at all – just a little added bonus round of awful.)

I got my foot soles shaved down yesterday too. Which was good, because I wound up walking to the ENT and then two miles uphill back home in 97 degree heat. In jeans.

At this point I’ll be really pissed if my nose gets in on the game. It is not supposed to. Back when I was pregnant with Young A, I had nasal congestion for weeks on end, and wound up seeing an ENT who diagnosed me with strep nose.

So really, I guess nothing surprises me anymore.

One year ago, September 8, the rug got pulled out from under me. The results to my CT scan of September 2014 were not what I was expecting. The crap had burrowed in deep. “The horses got out of the barn,” I remember Nurse Practitioner K saying to me, but immediately reassuring me that all would be well. (And, upon reflection, that my body was the barn.)

It’s my first metastaversary!!

Except for the extremely rough patch last November, when my treatment was suspended because it induced colitis, I feel that I really have nothing to complain about. I mean, I have complained, bitterly and repeatedly, mostly to J, and Mom, and lately to my therapist. (I could even complain right now: I have an earache.)

But here I am, a year after getting that crushing news, and… I’m alive and bad things are shrinking, and the new drug combo hasn’t even stopped my heart yet!

Would you believe that I was so much in denial about how much trouble I was in, I never actually asked for staging info for my cancer? It seemed to me that info was beside the point, a source of needless anxiety. Tonight, in an ill-advised and pointless Google search to find out all the different places that melanoma can metastasize to, because I was curious (and am now convinced I have bone mets because my wrist hurts), I learned a year after the fact that of course metastatic melanoma is stage 4. Those who know anything about cancer know that there ain’t no stage 5, unless you consider death a temporary waystation before you change forms.

There is plenty I am not satisfied with at the moment. Tomorrow I have to see at least two different doctors and possibly a third, all in order to manage medication side effects. The year, the stress, the medication, has me twenty pounds heavier than a year ago. My anti-seizure medication makes me totally exhausted. I’m hoping to quit that stuff soon.

But I think on this day (once I’m done with everything I have to do) it is necessary to pause, and yes, to celebrate. To life! In its many forms! And its many perplexing stages! And to acknowledge the many loved ones, friends, caregivers, and even random strangers, who helped me get here.

Here’s a song to accompany the post – (lyrics below to explain why I chose it):

Nine out of ten – Caetano Veloso

I walk down Portobello Road to the sound of reggae
I’m alive
The age of gold, yes the age of
The age of old
The age of gold
The age of music is past
I hear them talk as I walk
Yes, I hear them talk
I hear they say
“Expect the final blast”
I walk down Portobello Road to the sound of reggae
I’m alive
I’m alive and vivo muito vivo, vivo, vivo
Feel the sound of music banging in my belly
Know that one day I must die
I’m alive
I’m alive and vivo muito vivo, vivo, vivo
In the electric cinema or on the telly, telly, telly
Nine out of ten movie stars make me cry
I’m alive
And nine out of ten film stars make me cry
I’m alive

I’m wearing my contacts for the first time in like a whole month! Even though I have yet to see my eye doctor for a followup, I’m ready to stop with the steroid drops and more than ready to stop wearing glasses 24/7 (or 18.5/7, or whatever). However…

As soon as one of my “peripherals” gets better, another goes. I can’t hear very well (read: at all) out of my left ear right now. It’s basically swollen shut due to some long-standing eczema/crud that even predates cancer, and seems to come and go. I’ve never paid all that much attention, but my laser focus now that I’m on drugs that can cause any number of random side effects means I don’t let anything slide.

I saw the nurse practitioner at my regular doctor yesterday, and she prescribed some topical steroid cream. I’ve used it three times and I can’t tell if it’s working. J tried valiantly but in vain this morning to find me an ENT to see. I tried to find a weekend dermatologist – same result. Leave it to me to develop these problems not only on a weekend, but a holiday weekend. I talked to Nurse Practitioner K late yesterday afternoon – she didn’t have any particular advice for me, but her empathy came right through the phone and almost had me bawling.

I Doctor Googled the problem, which may or may not be “swimmer’s ear,” and found that I should probably be seeing a specialist about it. Though it isn’t clear if that’s a dermatologist or an ENT. And it may be that this dubious steroid cream may not even be reaching the spot it needs to. One thing I did learn from Googling is, I should really stop using q-tips.

We are heading out to lunch now at the house of one of Young A’s classmates. I hope that social interaction beyond the four of us driving each other slowly insane in a small apartment will be a good thing… even if I have to keep my earlobe tugged just so, so I can actually participate in the conversation. Maybe I can pass it off as a sort of tic, like people who bite their nails or twirl their hair. I’m not quite in the mood to explain a cruddy ear today.

On a positive note, thanks to a friend’s intervention, I think I have the perfect location for a writing retreat I want to take next month. Now I just need to get a good result to my MRI, and all systems will be go.

(I should look up the Latin for that: the opposite of penultimate.)

This morning was a bit less organized, with me not actually getting out of bed until 7:20. That won’t do. I also didn’t realize that J was fasting for bloodwork, so he wasn’t getting up. Still, got the kids to school in plenty of time. But, more yelling and nagging than I would have liked.

I raced through making far less elaborate lunches (grilled cheese for one, PB&J for the other) and found the time to make my daily kale-shallot-egg scramble. (It tastes so good I can almost forget how healthy it is.)

It was my day to visit the shrink. I decided I’d better have an agenda so I wouldn’t just ramble on, and wound up exploring a lot of territory with her today. It turned out that the question I had for her, the thing that has actually troubled me about myself for years now, is no concern at all. I won’t go into it, except to say that after she answered me in a reassuring way, she went on to make a recommendation so completely beyond the scope of anything I could ever imagine a mental health professional saying that I burst out laughing. It was inappropriate, morbid, and funny as hell.

It seems to me we’re both being really cautious about the relationship we cultivate, because I could easily see us becoming friends. But then she couldn’t be my shrink anymore. And I need a shrink right now.

After the laughs, there was time to talk about my upcoming cancerversary. While my melanoma was discovered in April 2013, September 2014 was when they found the lung metastases, so for me, that is the more significant anniversary right now (since I’m still dealing with it). I’ve been on this trip for almost a year. A long, strange one, which has taxed and overtaxed me and my loved ones, given us moments of despair followed great shovelfuls of hope and relief.

On the 17th, I’ll have my next brain MRI, and get the results a mere hour later from Dr K. (Excellent news for someone like me, who prizes instant gratification.) I don’t really anticipate hearing anything bad, especially now that I’m on the dynamic duo of meds. But hey, I was wrong before, a year ago. Here’s hoping I won’t get fooled again.

Here are some random shots from my walk in Manhattan today. (À propos of, no other illustrations today.)

I dropped the kids off at school this morning. They will be there until 4 p.m. I am free until 4 p.m. FREE. Well, not exactly. I made the mistake of asking what they’d like for dinner tonight, and they chose the most labor-intensive meal imaginable – a chicken broccoli stir fry (with a few dozen other ingredients we always throw in). Soon, I’ll need to go shopping for that. But for now – I’ve been to the gym and then through the shower and am lying in bed in the air conditioning claiming radical self-care as the reason for my inertia. Also, it’s brutally humid out. Going shopping and coming back will necessitate another shower. And then all the prep and cooking.

I’m trying to pace myself. So much need has built up inside me for time to myself, meditative time, space-out time, writing time, professional development time. I can’t possibly get it all done the first day. So let’s say today is about getting the kids back on track – which they did, admirably, this morning. And also about getting me back on track. J is still out sick from work with shingles. (He’s feeling much better, but is still contagious to the general public.)

I spent this morning in J’s shoes. Since April – no, actually, since February when I started working – he’s been carrying the family on his shoulders. Shopping, cooking, dealing with all that stuff. It is no wonder he was felled by a stress-induced illness. And yet I never once heard him complain about what had been dumped on him. (Maybe just once.)

I was hopping around the kitchen getting the kids’ lunches ready. As usual, they were too elaborate (salmon and edamame for Young A, tortellini for Young J). Even though I’d gotten up at 6:45, it still felt very stressful. And there was absolutely no time to think of breakfast for myself or J. Young J has stepped in, and decided that he can handle making the kids’ breakfasts. He’s done it two days in a row. I love him for it. Even when he leaves little globs of jam on the counter.

At the gym – my second visit this week – I felt all the soreness from my Monday workout and added new soreness on top of it. It was the most welcome pain imaginable. But, as I approach the one year anniversary of my metastases… I can’t help feeling a little tentative about any sort of routine I may want to establish. Obviously I want to get stronger, lose weight, and be fit. I want to reinhabit my body in a way that makes me feel good, not disgusted or judgmental. But I also can’t help feeling like this will all be knocked to hell at any time.

My kids have become big fans of the National Building Museum. When we are in DC we usually visit. At an exhibit there that’s geared towards kids, there is an interactive segment that seems a good visual metaphor for the way I seem to live my life now:

Or, in the immortal words of Chumbawamba, I get knocked down. But I get up again.

(I can keep hoping not to get knocked down, though, right? Resilience is a welcome resource to possess… but I don’t know if it’s inexhaustible.)

And now, a nap.

J woke up with a bad rash this morning. It had started as a pimple on his lip yesterday afternoon, which got angrier as time went on and by this morning, it had crept up towards his eye, and he had a headache. He’s had bad reactions to shellfish before, and he had eaten some on Friday, so we assumed that was what was going on.

I woke up in my usual fog but soon realized this day was going to be different than what we’d planned. J was going to pick up the kids from their overnight at his parents’ house and take them to a baseball game and then for Chinese food. I was going to… well, I can’t honestly remember. Maybe a bike ride? Some reading?

Instead, there was a rush to eat breakfast and get to the urgent care place by 9, when they opened, so there wouldn’t be a long wait.

J came out with unexpected news: Shingles. He hasn’t been in a lot of nerve pain, which is usually associated with shingles, but his subsequent visit to the ER confirmed that’s what it is.

I was a little concerned about my exposure to it, and the kids’ as well. But they’ve been vaccinated, and I’ve already had chicken pox. Also, even though the general consensus on all the general consensus type health websites said that “cancer patients” should be especially careful around people with shingles, it turns out that what this really means is “chemotherapy patients,” and I am not one of those.

I had a brief conversation with the doctor on call at the cancer center, who sort of rebuked me for saying I was receiving immunotherapy drugs. Apparently the drugs I am taking now, orally, are best termed targeted therapies. OK, doc. Thanks for the correction. Oops.

And by the way – I should be totally fine around J. We’ve asked his parents if they could keep the kids for another night, and J is staying home from work tomorrow. Shingles can be triggered by stress, and I wouldn’t doubt that that is underlying what felled J. I blame myself in part for the stress, of course, so I could even go as far as to say I gave him shingles… but that’s just ridiculous. And solves nothing.

It is always instructive to have the tables turn on you, so I’m going to try to muster some strength to be supportive while J rests up. It’s astonishing how much easier that is when the kids aren’t around causing general chaos.

I’m so sorry you’re sick, J. I’ll try to take as good care of you as you have of me. (Also, I was glad to have a chance to drive today. It’s been months now. I didn’t hit anything! and had zero problems parking!)

I got home today and kept forgetting to  look for the Mekinist shipment in the fridge. When I finally did, I found they triple-bagged it. God forbid they should use only one, or even only two, bags. It’s a tiny pill, almost cute. I take one, once every two days (on the same day I take dabrafenib). I start tonight.

I’ve been taking dabrafenib for months and haven’t had the fever/chills side effect. I’m a little worried this twosome will bring it about. I’m also a little worried because I read the insert that came with the package, which reads like a found poem I’ll call TALK WITH YOUR DOCTOR:

Tell dentists, surgeons, and other doctors that you use this drug. You will need to have heart function tests while taking this drug. Talk with the doctor. This drug may cause high blood pressure. Have your blood pressure checked often. Talk with your doctor. Have blood work checked as you have been told by the doctor. Talk with the doctor. Sometime, dabrafenib is taken with trametinib (Mekinist). If you are taking dabrafenib with trametinib, be sure you know the side effects that can happen with each drug. When these drugs are taken together, the chance of certain side effects may be raised. These side effects can be very bad and sometimes deadly. This includes bleeding, blood clots, eye problems, fever, heart problems (like heart failure), high blood sugar, other cancers, and skin problems. Talk with your doctor about the chance of side effects with your drugs. Very bad eye problems have happened with this drug. Sometimes, this has led to loss of eyesight. Call your doctor right away if you have blurred eyesight, loss of eyesight, or other changes in eyesight. Call your doctor right away if you see color dots or halo or if bright lights bother you.

Do I know how to have a good time, or what? Then, you get to page two, where they describe what the actual side effects might be, in living color and 3D:

So in my infinite wisdom, I’ve decided to take my first dose tonight, right before bed. At least if it makes me die right away, I’ll die in my sleep, I guess, is my thinking. On the off chance I bleed to death or go blind and freeze to death or develop fatal stools or breath that smells like fruit, please know how much I’ve loved you all and how much I’ve loved writing my way, sardonically and angrily, through almost a year’s worth of this crap. Also, please know I’ve never, ever liked blue cheese.

You should also know how completely melodramatic I’m probably being right now. I spoke with Nurse Practitioner R on the phone today, while I was on Amtrak and the kids were watching a movie. She sounded mildly annoyed, because she’d been in with a patient when I called, and maybe she was the only one around, and she’s heading into her third trimester of pregnancy which means she is going to have less and less tolerance for bullshit. Still, I told her that the pharmacist had freaked me out over the phone. She begged me to please continue to let them handle it, and not to listen to a random CVS pharmacist in Illinois who does not have access to my medical history. Apparently I had an EKG last April, in the hospital. (I was so out of it, I guess I wasn’t aware.) I don’t really need another one. I tried to object to the fact that I’ve been doing so well on dabrafenib and didn’t understand why the combo was suddenly necessary. She mentioned the one argument I’d heard in the office, which is that the two together tend to mitigate side effects (alarming package inserts notwithstanding, I guess). But then she mentioned the more salient argument, which is that one drug alone can eventually lead to resistance, whereas the combination of the two drugs makes that much less likely.

That, I can get on board with.

À bas la résistance!

I wish you all a healthy night of sleep. And I wish myself the same. Still not sure if I’ll keep the thermometer on my nightstand, but it’s a thought.

Last night, I sat out on the porch of what may be the oldest tavern left in Rockville, Maryland, and had beers with some college friends. It was therapeutic and so long overdue. But I got home late, setting me up for a cranky day today.

I walked out of Target today, where Mom was buying the kids their school supplies, because I got a call from the pharmacy that handles my cancer drug shipments, to schedule a date for them to send me my bottle of Mekinist.

Dr P and her staff obviously took care of me once again, because as before, the pharmacy rep started out telling me I’d have a $10 copay, but on his further investigation into their computer system, the copay magically evaporated. So far so good.

The call took an excruciatingly long time, with the rep blaming his computer for the delays, but I had to stay on to have a word with the pharmacist at the end. I figured this would all be pro forma. After all, I’d read up about Mekinist online and knew the combination of it with Tafinlar would be helpful. Right?

Wrong! I’d been kind of distracted. I found out that I’d be starting the two-drug combo treatment about five minutes before leaving for a week’s vacation. I didn’t spend a lot of time thinking about it, because… I guess that’s how I cope?

The pharmacist today said, “Now, Mekinist carries a risk of cardiomyopathy, so you’ll need to have a baseline EKG.”

What??? I heard cardiomyopathy, and instantly thought of my friend’s baby, who died of this condition, at three days old. Could this medicine, which they are using to shrink my brain tumors, have the same effect? Why exactly do I need to start fucking with my heart, the infallibility of which is, at this point, perhaps the only thing I’ve been able to truly count on in the past year?

The medicine is coming in tomorrow, and has to live in the fridge, and I’ll take it on the days I take Tafinlar (every other day). But – BUT – I am not popping even one of them before having a more reassuring conversation about side effects with Nurse Practitioner R or K. Or even Dr P.

Up until now I’ve been focused exclusively on the result of my next MRI, in mid-September, and then the result of my next CT scan after that, hopefully showing shrinkage/disappearance of the brain tumors, and no new metastases, respectively. I desperately want to stop taking the anti-seizure drug I’ve been on since April, which makes me totally spacy, exhausted, and possibly also fat (but I’ll own up to personal choices exacerbating that). My hair has been falling out a lot, not that anyone would notice, because I’ve always had plenty of hair to spare. My vision still hasn’t completely cleared up after my bout with medication-induced iritis, and now the other eye has fuzzy vision. I had a pedicure the other day, and the callus removal portion of it was excruciating.

I so badly need things to get less complicated, not more. I realize I may not have a choice, if I want to come out of this alive, but for the love of pizza! Let’s leave my heart out of it! (I’m trying to use less bad language. It really bothers Young J when I curse.)

I had a rough afternoon with the kids. I was exhausted when we got back from the school supplies outing, and they wanted to go to the pool immediately. I took a nap for a little while, then they came in and woke me and it just spiraled into chaos for about a half hour before we finally got to the pool. So frustrating. I know it’s the extinction burst of summer vacation that’s making them so crazy. But I’ve really had enough. More than enough. I went on strike before dinner, and the kids helped Mom prepare dinner. Young A knew how to trim asparagus (he learned at school). Young J whispered to me his secret to delicious broiled portobello mushrooms, which I will divulge here just for you: “You need to use an extremely large amount of salt. And soy sauce.”

By dinnertime I was calm again (and exhausted, having served as non-swimming Young A’s ferry boat across the pool about a dozen times). I even sat down at the piano and played some Chopin I hadn’t touched in years. (It had its moments.)

I’m worn down to the nubs, just in time for my promised outing to the National Zoo with the kids tomorrow. Time for me to get to bed. Last night I found a teddy bear on my pillow here, and clutched it all night, gratefully. I’ll be glad to have him there tonight too. (Missing you, J.)

No apologies here. It was good to take a break from analyzing every setback, every action, every failure to act. I vacationed from that while we were away. What else did I do? I stubbornly refused to become mired in self-pity, even when it would have been the easiest thing in the world to do. I think I did okay there, for the most part (although maybe J remembers differently).

We ate a lot, as we tend to do when we have access to a grill. We spent so many unforgettable moments with the kids, I worried they might start forgetting them. When a single week contains an epic bike ride, swimming in salt and fresh water, boating, a whale watch, a colorful parade, a juggling show and a campfire at sunset on the beach… well, I’m just impressed I remembered all of it just now.

On our last full day, we beached it up most of the day. I took out the inflatable raft and decided to let it float me wherever. It was relaxing, the sun went behind clouds for a bit, and there was a little breeze, so… I drifted. Far out. I think I even started falling asleep. It didn’t seem far, until I slid myself off the raft and started kicking through the suddenly-frigid water back to shore. It seemed to take hours, because the wind and the current were against me. Our friends and J were watching from the shore, wondering at first if I’d actually fallen off the raft, then watching me laboriously work my way back. I wasn’t waving, but wasn’t drowning, either. The bay, though, had suddenly become a slightly menacing place, which you’d never be able to discern in this photo of it at its best:

(The mosquitoes are also invisible.) I did mention to J that if at any point I became truly, gravely ill, floating out to sea on a raft would be my preferred exit strategy. J is getting used to hearing this sort of thing from me. I hope.

This feels like the summer that will never end (and ours ends a week before public school families’ does). I don’t really know how it will feel once it’s over. Once I can plan my own days and pick up at the kids at – new this year – the SAME TIME after school. I’ll be so grateful to go back to the gym, to get back on my bike, to return to my housewifely duties. I’m also planning to take a few days sometime in the fall to go on a writing retreat. Nothing particularly organized, just time away from the kids and J, in a place that is pleasant but perhaps sufficiently uninteresting that I won’t spend all day sightseeing, because I really want to just write. I don’t want to feel guilty or that the kids are missing out, so I feel like I need to go somewhere pretty boring. Cleveland?

The question of if and when I look for work again is wide open. I’m well aware that the longer I spend unemployed, the less employable I become. But I’m also feeling a little wary. I mean, look how it went last time around. It’s enough make someone with a stellar and uninterrupted work history gun shy, let alone someone who was listed as “Retired” the last time we had a credit check done, because I’ve been out of work that long. I am ready to go back to work – my brief experience of it earlier this year proved that to me. But I don’t exactly get a say when it comes to this cancer. So I may not wind up being able to look for work on my own terms.

For now, the train just left Baltimore, and the boys’ video is ending, which means that any minute, they will remember I told them we could open the Twix bar I got them after Baltimore, so that their sugar-addled little bodies would not terrorize the rest of the passengers for much more than an hour until DC. I’m trying to accelerate this last week before school… but it isn’t cooperating yet.