I’m cautiously optimistic. I think my two weeks of feeling like crap are over. Young A and I took a subway adventure to a favorite Thai restaurant in Queens over the weekend, and I ate some larb that cleared my sinuses utterly. I almost prayed, it felt so good to be able to breathe freely again.

I won’t lie, after my last post where I was feeling reassured again, I had a couple more headaches that worried me. A couple more phone calls with Nurse Practitioner K. But nothing seemed to stick around, and as I’m starting to remember through Facebook posts and last year’s blog posts, the fatigue I experienced last year had that as its salient characteristic – it weighed me down. I could barely move. Looking back, I honestly can’t see how I got anything done, let alone commuted to work and worked all day.

Yesterday Young J had a friend over, and before I took them to the schoolyard to play ball, they dumped out all the Lego people and played a game that I have since learned is a video game, Dumb Ways To Die. They had each minifigure meet a horribly ridiculous end. I didn’t listen too closely, but one guy got a flowerpot to the head (complete with flower, I’m sure, because Lego affords you those little details).

And then that phrase got stuck in my head for a while: DUMB WAYS TO DIE. Of all the dumb ways to die, cancer has to be one of them. (Is there any way to die that isn’t dumb? Hmmm.)

My sister in melanoma, Kate, has been in and out of the hospital the past few weeks. She’s in a lot of pain, and her husband is also dealing with Crohn’s disease, so neither of them is working right now. They’ve posted a fundraiser, if you are able to give – even small amounts.

This morning I had a lot of plans for the day. I was going to exercise. I was going to sit at my sweet desk and write. I was going to make meatballs for dinner. Then the continuing gloom of a gray sky and chilly weather got to me, so after moving the car, I came home and sulked.

Luckily, J called. He didn’t call specifically to ask how I was doing, but I realized I was probably sinking into a hole and I hadn’t eaten for a while and things were not going to get better on their own.

So I got up, cooked up some kale (I know, I know, I’m such a Brooklyn stereotype), and as I was cooking the sun came out. So I wolfed down some kale tacos, prepped everything for tonight’s meatballs, and got the hell out of the house on my bike.

I didn’t ride far, or fast, because I’m totally out of shape. That’s why it’s called training. I did ride, though, and it did wonders for my mood, and there was a whole bunch of pristine asphalt on my route, some of which was put down just this morning.

Kale, sun, wheels, fresh asphalt. My needs are astonishingly specific, but luckily, fairly simple too.

If you’ve already supported our bike ride, thank you. If not, and if you can, here you go.

I’m not dying.

That is to say, my headache was completely gone today, which was a relief. And since it is over, I now know what it was – my run of the mill monthly migraine.

Of course, no good news comes unaccompanied with bad. I seem to have caught a stomach virus today. That, paired with a punishing one hour plus wait to be seen at Dr P’s office, combined with it being lunch hour and me having a dodgy but empty stomach? Not great. By the time Nurse Practitioner R  (she’s back from maternity leave!) walked in, I was a little green around the gills. I gave her a hug, but she is a good nurse and recognizes when a patient may be about to collapse. Since they no longer stock cold drinks on non-treatment floors (something to do with rampant apple juice and ginger ale theft), she took a few minutes, but came back with a couple cans of juice to set me right.

My bloodwork is fine. I seem fine in general, other than my current intestinal distress. I’m good until my next scan on May 16.

Except I still cried. PTSD will do that, even when especially when you get good news. I mean, here I was back in the cancer center with a bad stomach. Shades of November 2014 and April 2015, all at once. You don’t remember specific pain, but you can remember a place and what happened there and if you’re in the exam room today that you were in back when it all started.

I grabbed some saltines on my way out (those, at least, are still available) and bought some Gatorade. Then I chanced it on the subway. I got a good, fast connection. I’m home now, J taking over for me this afternoon and evening, and I’m trying to see this episode in a new light, not reflections of the old ones.

“In April 2016, I thought for a day or two that I was dying, but I was not. I only had a stomach bug…”

Another feature of this “living with cancer” thing: Feeling like I am always lying in wait for the next big storm. And I can’t possibly know where it will come from. An electrical storm, and your body is a whole open field of lightning rods that aren’t grounded. Who knows where it will strike?

A spot – a freckle, really, but kind of large for a freckle – just kind of showed up on the top of my foot a couple weeks ago, and I was a little spooked. My cancer medication can cause skin toxicities, so I’m always supposed to be on the lookout for those. But I have read – probably too much – about metastatic melanoma patients who develop a new primary melanoma elsewhere, so I know that is possible.

I took a photo of it, and sent it to Nurse Practitioner K, who said it seemed like a bruise, but to keep an eye on it. I did. It didn’t grow, but it did get darker. Today I went to see my dermatologist about it. I was hoping he wouldn’t take a biopsy, because it would take a hell of a long time to heal. Indeed, it was nothing – probably vascular, a bruise, something like that. Whew.

But I’ve also got this seemingly endless cold, and a headache that has been with me on and off for several days, and I can’t help having flashbacks to last April’s events. I keep asking my body to remember the headaches from last year, compare how similar or different they feel to the ones I have now. But guess what? You can’t actually do that. Your body is not some reliable pain archive that you can access at will. (Good thing, too, or else most women would stop reproducing after birthing just one kid.)

With each small event, there is the potential for it to escalate to something bigger, more serious, all-encompassing, derailing. Or, it can be nothing. If only I could get access to the person who has their hand on the pinball plunger, ask them to just go easy this time. I have a bike ride to train for. I have a trip to Italy to plan for, be excited about, and actually take. Also, my boys need to graduate high school and maybe college too and find careers and even have babies, before I am ready to disappear. Also I kind of was hoping to have a real job again one day, before the end. Just one real job, with a paycheck that doesn’t make me laugh, and also something really crazy, a desk that isn’t in my house.

Tomorrow I go for a routine, previously scheduled checkup with Dr P. I’ll let you know.

It is April 2nd and if you didn’t check the calendar as you read yesterday’s post, you must be worried about me! Ha ha ha!

So, to recap, I’m actually not capriciously going off my meds in favor of cigarettes. Seems really preposterous when boiled down to just that one sentence, right? I never thought I’d actually fool anyone! Least of all my caregivers. (When I go to Dr P’s office for a checkup on Tuesday, I am a little worried they will pelt me with eggs.) FYI, I don’t do “daily cognitive exercises,” either, because it’s all I can do to get out of bed, most of the time!

What I didn’t mention yesterday, because the day was given over to my little prank, is that I saw Dr D, my ophthalmologist, and the pressure in my eyes is way, way down and I am now completely off any kind of eye drops. I’d already stopped the steroid drops a month ago, and was using beta blocker drops to help lower the sky-high pressure caused by the steroid. Finally. 20/20, decent vision, can wear my contacts again. Yes, the floater is still there. It will be there indefinitely. I can deal. I feel really good for having advocated for myself to get off the steroid drops, even though I had no control over how things would go. When you’re at the forefront of a treatment that has been approved but experiencing side effects of the 1% (of patients in the clinical trial), you have to be a maverick, sometimes.

And without my daily reminder of eye drops, my meds app is no longer ruling my life as much. Feels good. I am still trying to get out from under the shitty cold that derailed my training for the big bike ride before it even started, but I’ve got time. Somehow, even though I’ve been eating very badly this week on account of my cold, I’ve been losing weight. That can only help when I get back on the bike at last.

Our Italy trip is taking shape, the calendar filling up with places we’ll stay. I told J this morning that the trip, and the bike ride that comes a few weeks before it, have suddenly raised the stakes for my next scan, which comes in late May.

Now that I’ve acknowledged this, it will be all I can do to try to ignore it. I’ve posted this poem here once before, but I’ll post again just to remind myself.

How to Meditate
by Jack Kerouac
                      -lights out-
fall, hands a-clasped, into instantaneous
ecstasy like a shot of heroin or morphine, the gland inside of my brain discharging the good glad fluid (Holy Fluid) as i hap-down and hold all my body parts down to a deadstop trance-Healing all my sicknesses-erasing all-not even the shred of a “I-hope-you” or a
Loony Balloon left in it, but the mind
blank, serene, thoughtless. When a thought comes a-springing from afar with its held-forth figure of image, you spoof it out, you spuff it off, you fake it, and it fades, and thought never comes-and with joy you realize for the first time
“thinking’s just like not thinking-
So I don’t have to think
    any
      more”

It’s undeniably spring, now. The temperature this morning is 70 degrees. A new month has started. Time for a fresh start! Detox!

It will perhaps surprise some of you that for quite some time, I have been harboring great misgivings about my cancer treatment. I previously posted a video which revealed the unspeakable packaging waste that Big Pharma imposes on its customers who receive their refrigerated medications by mail. And I have written at great length about my treatment’s real (and imagined) side effects.

This morning, in the process of doing the daily cognitive exercises I have undertaken to sharpen my brain since having the gamma knife surgeries, I recited my name, date of birth and passport number correctly, but when it came time to recite the alphabet, I found myself saying the Hungarian alphabet. Backwards.

So, today I set up a conference call with all of my doctors: Dr. P, Dr. K, Dr. D, Dr. S, Dr. T, and for good measure Dr. Z (whom I have never actually met, but who seems like he would understand). I informed them that I am leaving their care to pursue plant-based treatments which I believe will make a big, big difference – because plants grow from the ground. They wished me well, by which I mean they did not object, I don’t think, because there was silence on the line.

Until my patent has been approved, I am not at liberty to discuss the nature of my new plant-based remedy, which, broadly, is composed of leaves from a New World crop (I really can’t say much more). I hope you’ll trust me when I say it’s a major disruptor. It’s too much to explain in a blog post.

I have been experimenting with a variety of delivery methods for my customized plant-based treatment. Pills are obviously well tolerated, but it is hard to grind up leaves and stalks into pill form on the artisanal micro-scale I am doing it… and of course, you need a water source close at hand. That is not always possible. Suppositories are another possibility, but not exactly my first choice. (I know I have discussed menstruation here, but when it comes to suppositories, I can be quite demure.) Intravenous administration is too troublesome.

So I have come up with a prototype that I think gets around many of these issues. It is based on a historical, now disparaged design, but I think it has a lot of merit. For one, it is biodegradable. It is compact, and can be shipped unrefrigerated in cartons which then can be slipped into a pocket or purse for transport.

I’ll be sharing more in coming days about my groundbreaking work in this area, but right now it is time for my next dose, so I need to step outside. I’ll leave you with a marketing poster I’ve been working on with a designer friend.

Happy April!

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.

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.

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.

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.

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.

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:

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:

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.