Not on the walls or roof

Shingles, by Eric Verspoor on Flickr, licensed under Creative Commons

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!)

What? This little thing?

These lil' things? Naw, they wouldn't hurt a fly.
These lil’ things? Naw, they wouldn’t hurt a fly.

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:

But wait! There's more!!
But wait! There’s more!!

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.

Needle scratch, mic drop, what the… ?

Needle, by Jenya Kushnir on Flickr, licensed under Creative Commons

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.)

Endless Summer

A sliver of light left.

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).

Soundings and boundaries.

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:

Last sunset.

(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.

Water, I’m coming for you

The sea is the religion of the nature - Fernando Pessoa, by Pedro Ribeiro Simóes on Flickr, licensed under Creative Commons
The sea is the religion of the nature – Fernando Pessoa, by Pedro Ribeiro Simóes on Flickr, licensed under Creative Commons

I’m too worn out to pack any more tonight, but I did a good amount of it already. And the boys packed their own clothes today (with supervision, otherwise they’d have brought 800 t-shirts and no underwear). We’re getting more streamlined. No diapers needed. No sketchy rent-a-crib left propped up at the door of our rental. It all gets easier.

It was a weird week. I had been planning to spend all of it with the boys, but Mom showed up unannounced for a visit late Monday night. I’d had a trying afternoon with the kids – including being chided for bad language by Young J – so I was glad to see her. She took them out on very long outings, two days in a row. We all went to the movies one day. Of course we had our usual friction, but the end result was, I was so relieved. I slept. I rested. I stayed away from the kids.

The boys have been very difficult lately. Something about being between things, not-camp and not-school but also not yet vacation. They have forgotten that they love each other. Or their love has turned into something impossible and aggressive. Maybe testosterone surges. Who knows? I’m hoping we’ll interrupt all that tomorrow, though. The car is out front and starting to fill up with the week’s  essentials that still seem to fill up the car, even without a pack n play or a bouncy seat to tote along.

I remember two years ago arriving at the beach, stepping into the water, and being overcome with emotional gratitude that I had made it there. That was August 2013, and I’d been through surgery, radiation, and then a nasty radiation burn on my back, that oozed and kept reopening and made life impossible for a while.

I remember that moment of gratitude and that it involved being grateful to God. And I marvel at this now, because I have not felt that way in almost a year. Grateful, yes, obviously. It (life, gratitude) isn’t something I can take for granted these days. I’m curious how things will go tomorrow, when I get reacquainted with the watery world, for what it turns out is the first time this summer. We’ve starved ourselves of beach all summer, somehow, even when we’re in easy reach of good ones. I’m greedy for sand, water, waves, the calming effect of low tide that makes you want to speak in hushed tones, the thrill and mild panic of the tide coming back in again when you aren’t ready.

Yeah, yeah, yeah. It won’t be all morose contemplation. Young A (whose half birthday will be commemorated this week with a cake) discovered The Beach Boys at camp this summer. I think they should be our soundtrack for the drive.

Meet the new drug


Yesterday I had a doctor double-header. First, I saw my shrink, who needed to coach me on how to respond to the chaos the kids have been causing lately. (Formerly best buddies, they taunt each other and hit/kick each other seemingly all day long.) We now have a plan of action, but need to put it into practice. And even when we do, an extinction burst awaits us before triumph. Sounds really great.

Next, I dashed down to Dr P’s office for a checkup. I think it’d been three weeks since I stopped taking dabrafenib. I wasn’t missing it. But, with my eye on the mend and my antibiotics finished, it is time to take up the fight once again. I’ll resume my doses of dabrafenib, but only every other day.  However, a new drug will join it: Mekinist (aka trametinib). It’s another inhibitor drug that is typically used in combination with dabrafenib. Because the need to start my treatment was so urgent back in April, they started me on just the one drug. Now, I’ll get the combo.

The hope is that the combo will mitigate the side effects compared to taking a single drug. I hope so, because the list of side effects of the combo pack are also not too appetizing. Still, having had an ocular side effect, I’d be more than happy to stick with “chicken skin” – and even my thickened footsoles – if I could avoid the others.

Last night I was feeling horrible after dinner. Really bad. I went for a walk, which helped, but when I came back my stomach was tied up in knots. The freezer had just started making a terrible racket and that was stressing me out too. I got in bed, put a heating pad on my belly (in an unpleasant reminder of my sick days last November), and J made me chamomile tea. After about ten minutes, I dashed to the bathroom and my dinner came up. It was such a relief. I’m not sure why that happened, really – I haven’t actually got the new drug and hadn’t even resumed taking dabrafenib yet.

I had, however, been for the umpteenth time perusing the list of side effects for levetiracetam (aka Keppra), the anti-seizure med I’ve been on since April. My next opportunity to reduce the dosage – or even stop taking it entirely – will be after my next MRI in mid-September.

While the dosage was recently reduced, I think it continues to affect me. My fatigue, inability to focus on something for a sustained period of time, even the stubborn refusal of my body to shed even a pound of its fat suit – all may he attributable to this pill. I’ve read horror stories about it on Internet forums for people with epilepsy.

The weirdest side effect I read in the long, long list was “depersonalization.” I had to look that one up. It’s an “anomaly of self-awareness.” It has to do with feeling external to oneself, to feeling like an outside observer. This fascinates me, because I’ve felt that way, to some degree, as long as I can remember, and certainly before Keppra and I got acquainted. It isn’t a constant feature of my identity, but it certainly sounds familiar. I’m having a hard time understanding how it could be bad to see oneself from the outside, particularly at a time like this, when being fully inside can be such a chore.

How is it bad?

Un petit rien

I was walking to the eye doctor today (still being treated for iritis – no longer hurts but still don’t have great vision in that eye) and got the most ridiculous, fleeting thought:

What if all of this was fake? What if the initial results of my biopsy were swapped with someone else’s by mistake? What if everything from that point on has been a cover up? The drugs they gave me were real, not placebos – at least, not the ones that made me so sick in November.

You do what you have to do with silly thoughts like these – acknowledge them and move on. Unless you are a conspiracy theorist and have a strong feeling you’ve been turned into an unwitting tool of Big Pharma, that is.

It made me think of Capricorn One, a movie I saw when I was way too young to worry about authenticity or truth.

I’ll just leave you to ponder how weird my brain is, that I can suddenly have a moment where I wonder if all of this was fake.

Then I trip up in my speech, like today when I said words like “prefix” and “progress” before getting to the word I really wanted – “project.” Am I just tired? Do I need caffeine? Or is this the new normal after gamma knife surgery? Stay tuned.