It’s the little things

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Backyard Ladybug #1, by Pascal Gaudette on Flickr, licensed under Creative Commons

Yesterday was better. All my troubles seemed so far away. I even went to the gym.  I’d slept a good night, not so congested. I even made dinner. I made! dinner! That was pretty exciting.

Then last night again I didn’t sleep well, the congestion was worse. Woke up with a splitting headache, sure the worst was happening and my brain had been liquefied by the cancer (I do realize the cancer does not attack in the same way a mosquito does, yes, I know this). I was coughing up ugly things, too.

I couldn’t really seem to get out of bed. I did, briefly, but it wasn’t a good idea. So I went back and even managed to nap a bit. Woke up and it was past time for my cancer meds, and it’s important to keep to a schedule with those because they require a three hour window of not eating or drinking anything but water. Reached for the pills, put them in my mouth, then realized: My bedside water bottle was empty! Down the hatch, I urged, and managed to not get them stuck in my throat. So. Another stupid milestone: I could easily take my meds in a drought.

I staggered out of bed after another hour and heated up some chicken soup. I ate it and felt very hot, sweaty, but no fever when I checked. It was a beautiful day outside, the mercury rising half hourly, and I was missing it all! I went back to bed, listened to a podcast half-heartedly. Finally, I decided to call my doctor. They had time to see me! Felt like winning the lotto (for five bucks). Then, after a most unusual seventy-five day wait, my – ahem – cycle started again. Without a sputter. Just as though it had been here regularly all along.

I walked over to the doctor (about a third of a mile, uphill). It winded me, and I worried. I’d taken that same walk many times before, and when I get winded by it, that means I probably have pneumonia.

After an hour, the nurse saw me. She handed me the dreaded tube and had me stand in front of the computer. In the past, a crude image of a tree has shown up, and my breath through the tube has to blow all the leaves off. Today, though, a curveball: it was a bunch of birthday candles to be blown out instead, but in a formation not unlike bowling pins.

Every time I start this test, I think, “No sweat.” And yet, every time, I feel like I’ve failed it. Too many leaves stay on the tree. Today, it felt like more than half the candles stayed lit (and there were no children to help me). I repeat the test three times. Each time the computer screen says, “Blow harder.” I blow with all my might, and the message never changes. I feel pre-defeated, after three tries, even before the doctor comes in to listen to me breathe. My head was splitting with a migraine, but at least now I knew why: it was my usual menstrual migraine, right on schedule, and since I didn’t exercise today (the only surefire prevention), I hadn’t headed it off at the pass.

The doctor came in. First, I let her listen to my breathing. I heaved huge, heavy  breaths like it was my job. She didn’t seem too concerned. There were no “rhonchi” (my medical term for the day), the doc said, but there she was, writing me a script anyway for a chest x-ray. Which meant I’d need to go to the imaging place far from my house, and I needed to pick up Young A in ten minutes. The stars aligned, and I managed in the space of five minutes to: 1) get a phone signal (the doctor’s office is in a basement so that can be a challenge); 2) reach someone at school who promised me Young A could go to aftercare for an hour; 3) tell the doc my period started again, but that I was worried about my thyroid numbers but I hadn’t actually gone and done the bloodwork she’d ordered for me because I was initially too lazy and lately too sick, and hey, I didn’t need a pregnancy test anymore! It turned out that the doc can do the bloodwork herself, she just wrote me the order since they don’t always have time to do it in the office. So in no time flat, I made my fist, got stuck, gave my two vials, and got out of there. I called J and begged him to leave a little early so he could get the kids by 5, while I walked to the bus stop to head to the x-ray. I also urged him to find someone else to attend the Jonathan Richman show we were going to see tonight, and he did.

My phone was running low on juice, but as I was stepping on the bus, I was in the process of booking the apartment in Rome we’ll stay in for a few days this July, when we take the kids out of the country for the very first time. I exchanged some messages with the owner in minutes, and somehow managed to complete the transaction before my phone screen dimmed. I smiled as I stepped off the bus and walked to the imaging place. A magnolia tree I passed had wide-open blossoms, like it was high-fiving me.

My migraine came to a jagged peak in the waiting room. You may like Ellen, but try listening to it at top volume with a musical guest, while your head is splitting open. I hadn’t been a fan and have probably now developed a lifelong aversion. I somehow managed to keep it together until the waiting room emptied out, then asked the receptionist to please turn it down.

The chest x-ray took no time at all, just the usual berobed, weird tango with the machine, lead apron tied like an apron. I don’t stop to wonder how I have gotten so used to so many things, how I have become so medically obedient. X-rays, CT scans, even MRIs. There was a woman in the waiting room insisting she’d need a heavy sedative for her MRI, and they were telling her she’d need a prescription, and I knew she wouldn’t think much of my MRI advice (“take a detailed mental tour of a place you haven’t been since childhood”).

I came out of there starving, parched, wanting nothing so much in the world as a sesame bagel from the good bagel place around the corner, and some kind of juice. But I also wanted to get home, and I didn’t know when the bus would arrive. A woman in front of me was having an elaborate sandwich prepared for her by the sleepy worker, and I kept thinking he was done, but then he would lazily take a tomato over to the slicer and shave off a couple of pieces, then lazily repeat the process with an onion, as though knives had never been invented. I thought my head might explode. Once she’d paid I said quickly that I wanted a sesame bagel, and grabbed some juice. I didn’t watch him, because I was looking out the window to the bus stop across the street.

I paid. I opened the door to leave and saw the bus pulled up at the stop, traffic coming in both directions. I channeled my childhood hours spent playing Frogger – see, Mom and Pa? It was useful! – and managed to get across the street without getting hit. I have a weird feeling that I maybe lifted my arms and legs in an exaggerated way, to get my body to run. It didn’t feel at all natural. I think in that moment I knew I did not actually have pneumonia, because if I did, I never would have been able to run for a bus. I have had pneumonia, and you, cruddy-ass cold, are no pneumonia.

On the bus, I switched my nearly-dead phone back on. There was a voice mail from the doc already. Indeed, it wasn’t pneumonia! I opened the bag to find a cinnamon raisin bagel, and a pretty burnt one they’d probably have given out for free in 30 more minutes, and I wanted to curse the counter guy.

Guess what, though? Nothing was going to really ruin my day now. I felt horrible, couldn’t breathe through my nose, had a splitting headache, was going to miss a concert I’d been looking forward to. On balance, though: No pneumonia! Magnolia! J gets to hang out with an old friend tonight! And, four wonderful nights in the not-so-distant future will be spent with my family in my favorite part of Rome, a stone’s throw from Piazza Navona.

OK, so I can’t breathe right now, or even deal with bright light (my phone display is turned down to the dimmest as I type this) but I can find many reasons to smile. This makes me an optimist, or an idiot, or – perhaps most accurately – about equal parts of both.

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Conspiracy theory

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Don't Breathe, by jensmith826 on Flickr, licensed under Creative Commons

I’m a believer in coincidences. Usually these coincidences are for the good – such as finding out, when I met J, that his middle name is my late grandfather’s first name (a slightly unusual one, at that).

Having survived now long enough to reflect on it, I start to find coincidences that are not so positive. In April, for instance. Three years ago in April is where my troubles began, when my dermatologist biopsied a spot on my back for the second time and found it had turned bad, real bad. Last year in April I went from being cleared of all charges to having trouble speaking and finding out I had a brain full of tumors. The cruelest month. (And that was before taxes.)

So it is freaking me out that last year at this time, in the days leading up to April, I had a bad cold and headache. And today, I’m lying in bed listening to the rain, and mouth-breathing due to a new cold, and my head aches, and I can’t quite remember if it ached this same way last year, or different.

Lightning doesn’t strike twice in the same spot (well, sort of). Step on a crack, break your mother’s back (please, children, step on a hole instead). Superstition ain’t the way. I’m going to ward off this cancer-in-April conspiracy with more sleep, chicken alphabet soup, and this song (which I’m sure I’ve linked here many times) on endless repeat. Thinking of you, Lou.

What good was cancer in April? / Why no good… no good at all.

Defensive crouch

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Hard times.

Nothing is wrong. Nothing is wrong. Nothing is wrong. Except, of course, that I’m a few weeks away from the one year anniversary of my life’s biggest reversal, to wit: April 14, 2015 – No Evidence of Disease (on my lungs)/April 15, 2015 – Much Evidence of Disease (a dozen tumors on my brain). Too many cancerversaries guarantees you can find something to scare you any day of the year. Facebook also doesn’t help, because lately it too insists on anniversaries. I’ve been seeing my posts from last year, when I got sick and thought it was just a common cold with sinus headache, and it turned out to be a common cold PLUS MUCH MORE CANCER.

It is too easy to go into a defensive crouch. To decide I am too afraid to know if there really is something else, whether new and horrible or more of the same old. And yet – in spite of how much I’ve been exercising, planning for the summer, registering for charity bike rides… I’m kind of freaked out.

It’s not like I have any major symptoms. Instead, minor ones. Twinges. And abnormalities that can masquerade as the normal passage of time, Change of Life.

That’s right! You get to hear more about my period!! I haven’t had one since January. Not even the faintest hint of one. Having been pregnant twice, I know I’m not pregnant, but I peed on a stick – twice – to confirm I wasn’t. My regular doctor suggested a blood test to make extra sure. I picked up the prescription for it over a week ago. And… I still haven’t made the time to go to a lab. In the meantime, I emailed Nurse Practitioner K about it, and she said it might in fact be related to my meds, and that I should have my doctor check. Yes. I will get right on that. Next week. I think…

You’re never really in the clear when you have had brushes with cancer. If it’s not the disease insinuating itself where it isn’t wanted, it’s the treatment for the disease that slaps you upside the head, as if to mock you for believing anything could be so simple, so binary as KILL/CURE.

And cancer and its associated illnesses and side effects and annoyances happens to be my job these days. So it feels like I haven’t really shown up for work lately. Time to uncoil myself from the defensive posture (or is it something else, like head burrowing into sand?). Get the bloodwork done. Hell, even spend a few hours to call the imaging place and my insurance to fight the $300+ bill for “non-standard” breast imaging from my little January scare about nothing.

And you, yes, you, sitting there reading this: Is it time for your dermatologist checkup? What do you mean you’ve never had one? Oh, you went once like maybe a year ago (which turns out to be three years)? You know what to do.

Happy Purim/Your Support Is Requested

It is one of the happiest holidays on the Jewish calendar. It involves masquerade, storytelling, eating sweets, giving to charity, and (for adults) drunkenness.

Which is what makes it all the more painful that the Jews of Brussels are not having their customary Purim celebrations this year.

The kids have been dressing up all week at school but today was “Wacky Wednesday” and they wanted no part of it. Tomorrow at school, they will be a Mets player and a firefighter, respectively. They will prepare gifts for the poor, eat sweets, and make merry. I’m sad for their Belgian counterparts who can’t do that right now.

It’s a grim time overlaid with a happy holiday… Or else it’s a happy holiday overlaid with more sadness and more feelings of futility.

It is also, however, spring. There was no denying that this morning in the park.

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Spring, with cone

I’ll be in the park a lot more in the coming weeks. I’ve decided to sign up for a fundraising bike ride to benefit cancer immunotherapy research. The ride takes place June 25. Between now and June 25, I need to get much better at climbing hills on my bike. I’ll need to ride early and often. (Let me know if you ever want to join me – I could use the company!)

And if you don’t want to or can’t join me, there is still something you can do: Sponsor me. Here is the link. You know what to do. I am so grateful for whatever you can give – and I am living proof that it is for a good cause.

“Dance… like no one else showed up for class”

I had One of Those Days, where you don’t know how you are going to get it all done, and yet you get it all done. Grocery shopping (which, at our small and overcrowded food coop, is generally a task left to any day other than Sunday morning), a trip to the transit museum, a doll-sized lunch (courtesy of the diet I am back on), my first modern dance class in ages, and finally, cooking dinner for us and also a friend whose husband has been in and out of the hospital.

I’d been looking forward to the dance class for weeks. Since it’s scheduled at 2 p.m., which is not an officially sanctioned Fitness Hour in my universe, I have kept finding excuses not to go. But after a couple tries at ballet in the past few weeks, I felt like my feet might be able to take it. So I showed up. I was the only one that showed up. And the teacher (who owns the gym I go to) did not cancel class due to low enrollment, since she scheduled this class because she also wants to get back to dance. At first we stretched and chatted. The intermittent pain in the back of my knee wasn’t bugging me today, for a change. Even my feet seemed to be cooperating (and they are anything but cooperative, usually).

This is how I came to spend the better part of an hour with very few breaks, working on a movement phrase the teacher taught me. This activity accessed long-neglected parts of my brain, and I was pleased to discover those parts are still firing. Not as quickly as before, to be sure, but I think I was reasonably successful in movement replication, which was my only goal for the first time back. My goal was simply not to fall on my ass. And I didn’t even come close. Actually, by the end, I felt kind of like this:

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Balloons, by James on Flickr, licensed under Creative Commons

Floaty. Mobile. Not sandbagged, as I tend to feel often, of late. My brain still works, still speaks the language of movement, doesn’t have to retreat to memorize its verb conjugations in private for hours at a time.

There was the inevitable crash once the endorphins wore off, of course. Which left me like this:

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Deflated Chicken, by Rubin Starset on Flickr, licensed under Creative Commons

I’ve been going to bed earlier and earlier, lately, but not managing to actually go to sleep early. Something tells me tonight won’t be like that.

Dust

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Blackall Range Nightscape, by LJ Mears on Flickr, licensed under Creative Commons

Busy. I’ve been busy. This week has been Get Back to the Gym Week, because no one is more of an avid gym-goer than me when I buy a monthly pass, as I have this month. Also, Back on Bike Week, thanks to a warming trend which will retrograde this weekend, when we get something like five inches of snow – just enough to make the magnolias look sheepish. I’ve been pursuing possibilities of freelance work. And tomorrow, I go to my second volunteer shift at a local synagogue, where I’ll help produce about 600 sandwiches for the needy, in three hours. I washed the lettuce last time, and I think that’s what I’ll choose tomorrow, too. I work alone at the sink by the window. The work is straightforward, and I don’t have to handle any noxious substances (like mayo, or gossip).

Today was going along pretty much on schedule. I went to the gym. I came home. Except that the day began with something like a portent. This:

Crash!
Crash!

One of the new bookshelves in my room fell off the wall at 7:15 a.m. Luckily I wasn’t sitting under it, and nothing was damaged, but it was close enough to freak me out. I sent a preemptive email of apology to our downstairs neighbor. Turns out, a max load on a shelf is a max load. I had too many unread books lined up there. Dust and plaster everywhere. Right in time for me to get the new wireless keyboard and mouse I’d ordered so I could really set up my writing space under that shelf…

As it happens, this week was also the first week since last summer that I have been able to enjoy reading, because my eyes are finally coming around. And as it also happens, my turn came up at the library for a book I’d heard about and been wanting to read, in spite of myself: When Breath Becomes Air, by Paul Kalanithi. This book, by a gifted neurosurgeon and writer who is faced with a terminal cancer diagnosis, has been widely praised by people I know who live far from Cancerland. In spite of myself, and even though I’ve avoided reading anything about cancer or terminal illness (mostly because I’ve avoided reading anything at all), I couldn’t put it down. I was about 2/3 of the way through it last night and planned to read a few pages before going to bed. An hour later I had reached the end of Paul’s manuscript and was a few pages into his wife’s devastating epilogue. I forced myself to put it down, but I still wound up sobbing to J about it before I could go to sleep.

All morning I knew I’d need to come home and face reading the end of the book. It troubled me. I came home and crawled into bed and didn’t read it for a while, and I didn’t clean up the detritus from the shelf collapse, either. Finally, I ate some lunch and then I read the end. It was as sad as anticipated, but also, there was beauty in it. And while I read it last night I was blown away by some things in particular that Paul had written, thoughts very familiar to me:

No one asked about my plans, which was a relief, since I had none. While I could now walk without a cane, a paralytic uncertainty loomed: Who would I be, going forward, and for how long? Invalid, scientist, teacher? Bioethicist? Neurosurgeon once again, as Emma [his oncologist] had implied? Stay-at-home dad? Writer? Who could, or should, I be? … I hadn’t expected the prospect of facing my own mortality to be so disorienting, so dislocating. (pp. 147-148)

I finished the book, had another sob, thought about napping. Instead I opened Facebook and learned that a fellow traveler in metastatic melanoma had gone in to the hospital again, in a lot of pain, and experienced a setback.

Is it here that I confess that when I first got sick, I tried really hard to avoid knowing anything about other people with my same illness? Sounds really obnoxious of me. I guess I thought I was protecting myself. I never went to any support groups, perhaps for the same reason I’ve never attended any Weight Watchers meetings, and the same reason I never joined a youth group. But something I have done quite often is made online friends. And so it has been with metastatic melanoma. I don’t frequent the message boards very much, but I have found other bloggers, and other patients have found me through this blog, and all of a sudden I have these connections and I’m just as grateful for them as I was when I was pregnant and had online friends going through that along with me.

I take it very personally when my friends are dealt a bad hand, so I’m pretty mad right now. But also hopeful, and possibly even prayerful (though the jury is still out on whether I can actually bring myself to pray). I’m pulling for you, K, and sending you the magic of that photo up there – no, not the one of the fallen bookshelf, the other one, with the fairy-dust magic of the Milky Way as seen somewhere in Queensland. I hope it ushers in the healing you need. And, since you, who festooned your gamma knife head frame with Xmas lights and tinsel, appreciate goofiness, here’s me and J being goofy a million years ago – I mean, just this past Monday night. Get well soon, kiddo. #fuckcancer

Goofballs United
Goofballs United

Escorting the dead

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Old Jewish Cemetery, Prague, by Jim Killock on Flickr, licensed under Creative Commons

Yesterday we buried J’s grandfather. He passed away this week, at the grand old age of 103. The Hebrew word for funeral actually means “escorting” – and that is just what we did.

When someone reaches such an age, everyone is quick to claim a little bit of their aura. He wasn’t my grandfather, but for the length of time my story has been intertwined with J’s, a dozen years or so, he formed a small – and charming – part of my story, too.

From what I could see, he seemed like a very lucky and resilient and healthy guy. He adored playing Bingo, and even won a game a couple of weeks before the end. He cheated death all these many years, even as his wives could not. He leaves behind his third wife. He was buried yesterday next to his second wife.

My main role in all of this was to introduce the kids to death and funerals and mourning. (I mean, who better for them to learn from than the person who has that big sword over her head all the time?) I’m not big on concealing things from my kids. And I didn’t deal with the death of a close relative until I was pretty old (post-college). I wanted them to learn the Jewish way in these things.

And so they did, this week – helped by the rabbi in J’s family, S, who conducted the service yesterday, and surprised everyone by insisting the grave not only have some dirt in it, but that it be almost completely filled up by the mourners. It made for a long few minutes, and some people were not being very accurate with their shovelfuls of dirt and sprinkled the new widow (who is not Jewish, and seemed a little shocked by the protracted shoveling). There was a young kid hovering a bit too close to the open grave. Rabbi S was turning quite red and was urged to take a break from shoveling.

That’s the salient detail from yesterday. I find I can remember one salient detail from each funeral I’ve attended which seemed to have little to do with the funeral. For example, on the way to my grandfather’s funeral, which was during the Memorial Day weekend, the highway was clogged with motorcyclists on their way to Washington DC for the annual Rolling Thunder gathering. At my grandmother’s graveside, we all – and there were a lot of us – huddled under the small tent against a sudden and violent thunderstorm – which, come to think of it, did not seem unrelated at all, at the time.

How did the kids take this news? Young A seemed okay – when we told him the news the other day, he did ask whether Grandpa H was “really gone, or will he come back after three weeks?” Young J took it much harder – burst into tears, then retreated to his room for a while. Yesterday he watched everything intently, while Young A sat down on the grass, quietly waiting for lunchtime.

As we drove out of town, we passed the amusement park which in the past has always signaled our arrival and departure from the town where J’s grandfather lived, during our annual visit to celebrate his many birthdays. It was dormant yesterday, and that is how it will stay in my memory, since we are unlikely to pass that way again.

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Idle amusement, Allentown, PA