Backwards glance

christiania, glass house, august 2007, by seier+seier on Flickr, licensed under Creative Commons

I’m lying in bed with the weight of the past week on top of me. (No wait, that’s the winter duvet which we still need even though tomorrow is May. DAMNIT.)

In the first hours of April 24, Kate Boone passed away.

I’m so sad. I’m frustrated that recent advances in melanoma treatment didn’t go far enough to save her. But I’m so glad to have known about her. Social media made it possible for me to know her, and to convey my condolences to her family, but it is hard to know just what to say to people who now contend with a giant hole in their lives. There was a memorial service for her yesterday in Houston which I wish I could have attended. Her husband is still coping with medical bills and illness of his own. If you can, please consider helping out.

It has been a week since Passover began. It is ending, and not a moment too soon. We’ve spent the week afflicting ourselves by avoiding bread and other related products, to remember our ancestors’ wandering in the desert for forty years. At the end of those forty years, on a diet of matzah and manna, they were probably pretty constipated. Today, they’d probably be working on creating a bread starter using airborne yeasts. The seders this year were a lot of fun for us, because the kids, particularly Young A, were so engaged. That’s what happens when they spend a good month of school preparing for the holiday. They enriched the experience, and made it new for us. That’s really all you can ask for, I think. (Young A seems poised to inherit the mantle of seder leader from his father, who leads the seder for his family.)

We spent a few days in DC, visiting with family and also visiting the National Building Museum, which never disappoints. Since J had to be back at work on Monday, I did the drive home on Tuesday solo. I hadn’t done a long drive like that in ages, and certainly not since the brain mets (and being on anti-seizure meds and being forbidden to drive for a while). Other than a tense few minutes on the New Jersey Turnpike, where the driver of an 18-wheeler got sick and needed to be helped off the road by some very on the ball state troopers, it was a good drive. I played some episodes of a kids’ science podcast, Brains On!, which delighted the kids (and me). It was a good break for them from readingreadingreading. (I can’t complain, though – they’ve always been very good car travelers.)

Tuesday evening, I attended the book launch of another melanoma compatriot I met through a friend, whose memoir, A Series of Catastrophes and Miracles, just came out. I am so happy for her, and have been tearing through the book the past few days. Some parts I feel I could have written myself. Sometimes I cringe with the recognition of the exact sensations being described. Sometimes I burst into tears when she expresses the exact same thoughts I have had regarding my kids, and how difficult it is to watch them deal with a parent’s serious illness at such a young age. I hope the book is read widely, because it provides such a good window into what it is to be a cancer patient in the age of immunotherapy (among a dozen other things). Pick up a copy today! Or borrow one your friend bought! Or get it from the library! But do read it.

Wednesday afternoon, I managed to accomplish three loops of Prospect Park on my bike (that’s a little over nine miles). I hadn’t managed that since September 2014, the day before having my lung biopsy (which I consider the true start of my trip down the rabbit hole). I’ll need to be able to manage more miles than that by June’s ride, of course, but I am feeling less daunted by that. This coming week, with the kids back in school, I’m aiming to kick my training up a notch (BAM!) and ride in Central Park, where there are more challenging hills (but a million more slow-moving obstacles… I mean, tourists). Your sponsorship means the world to us – if you have already donated, thank you so much for your support! (If you have not gotten around to it yet, here you go.)

So, there, by way of explaining my silence this week, you have it. Sadness and gladness and busy-ness. Full spectrum living, is all.

We all got a space to fill

The kids’ first day of Passover vacation (which lasts until MAY – which seems impossibly far off). I feel like we kind of hit it out of the park today, and I worry it’s downhill from here.

We didn’t rush to get out of bed today. J made pancakes this morning, because starting tomorrow night, no pancakes – or many other staples – for a week. After J left for work, I tried to motivate the kids to get out of the house early, then realized they weren’t having it, and neither was I, really. We started a building project that Young A suggested, and that somehow turned into Young J suggesting we invent a new game, and so we did! We borrowed a spinner from another game and made up a new one, involving the design of new transit systems. There was a lot of drawing required in the game. It wasn’t always clear whose turn it was. But by the time we needed to leave the house, I had designed a ferry route, Young A, a train route, and Young J, a bus line. It was a lot of fun.

That took us to noon. Then we went to the pizzeria for one last hurrah before the holiday (well… maybe one more tomorrow for lunch) and then hopped the subway to Central Park. There isn’t usually much phone service down there. But there was just enough for me to spot an email saying that Prince might be dead. By the time we came out of the subway, it had been confirmed. I was in the same kind of shock and disbelief I found myself in mid-January when Bowie died. But I was on an outing with the kids, it was a beautiful spring day, the park was a riot of flowers and amusements, and I couldn’t afford the luxury of a breakdown. Here’s  a little photographic sample of the day, which included a carousel ride, a zoo visit, and an encounter with newborn mice at a playground.

Like Bowie, Prince was part of the aural wallpaper of my coming-of-age – ever-present, ubiquitous, dependable. It feels a bit like the wallpaper is being unceremoniously ripped down. I’d post a link or two from YouTube but they seem to get taken down eventually. We have the music. We just won’t get any more of it.

When J got home from work I was demolished, but also determined to get a bike ride in. Biking will be tough for the next week while the kids are out of school, but I’m determined to train regardless. I don’t want to approach June 25 with trepidation – I mean to go in strong, knowing I can do the miles and survive the hills. Yesterday with J, I rode two laps of the park. (The last time I rode three laps, I believe, was in September 2014, the day before my lung biopsy.)

Tonight, I thought of maybe going a bit farther, another half lap with the cut-through by the old Quaker cemetery, but I didn’t want to push it. I enjoyed the beautiful evening, and I sang Prince songs as I went along, until I got to the big hill and was only able to manage a whisper.

At a space of a year

Last year, this was going on. I was living minute-to-minute. Didn’t know if things would improve.

This year, this was my day: Pancakes for breakfast and a cappuccino/milk toast with J and the boys, because it’s a year later and I’m still here. A lazy morning and then a sudden formulation of a plan for the day. An outing to the city for lunch, a movie, a playground.

Back home, I ate dinner quickly and then left again – alone, such a sweet, unfamiliar sensation on a Saturday night – to see a friend who was reading from her new book. A friend who, like me, knows very well how it is to feel lucky to still be here.

I’m glad I’m here. I’m glad you are too.

Jumped the queue

More shrinkage! More happy, happy shrinkage!

So I got my May brain MRI a few weeks early, yesterday. Results this morning. In the image above, focus your attention on the large white blotch from the November scan (left), which was the area of bleeding that necessitated some “touch-up” gamma knife surgery. Note how the spot is barely visible on yesterday’s scan (right). This is good!

The reason for my haste in having the scan was that on Tuesday night, right when I was getting ready for bed, I suddenly felt very dizzy. I couldn’t move my head too quickly or I’d start feeling seasick. I also had a headache. When I woke up the next morning (before 6 a.m.), I also vomited.

So I activated the usual phone chain, starting with a call to Dr P’s service. I got a bleary sounding call back from Dr P in minutes, who said I’d need to have an MRI immediately.  Later talked with Nurse Practitioner A who works with Dr K, and they booked me for an MRI at 3:30 p.m. I was super uncomfortable, and asked whether it couldn’t be done sooner in the ER, only to learn that MRI is not standard practice in the ER, that I’d only get a CT scan there. Also, I learned that in a battle between the oncologist and the neurosurgeon, the neuro gets priority in terms of MRI scheduling. 3:30 it was.

I hunkered down in bed for most of the day (coincidentally and very luckily for me, the day of the week J works from home), sleeping off and on. They’d told me to take some leftover Decadron prophylactically, but somehow I was still able to doze. Decadron also makes me ravenous, so when J went out to run an errand, I asked him to fetch me my favorite slice from the pizzeria, which is covered with fresh arugula. (It seemed like a good idea at the time.)

In the afternoon, I took a shower, spotted by J so I wouldn’t fall. We took a cab to the cancer center, me sucking on Jolly Ranchers in an effort not to hurl. Success.

When we got to the cancer center I got in a wheelchair. The guy in charge of them tried to steer us to a smaller one, and when I got in the one we’d chosen, I saw why. It was EXTRA EXTRA WIDE. Hard to get through doorways and frankly not that comfortable for me. It was the linebacker model, I guess. I was half bemused, half annoyed by J’s wheelchair-driving ineptitude, but ultimately, grateful I haven’t really spent much time in them for him to have much practice.

My stomach had started churning again while the nurse prepped me for the MRI. I took deep breaths and willed myself not to need to vomit for the half hour I’d be flat inside the tube. Somehow, I managed to stay calm. I don’t know how I did it. I’d planned some visualizations to pass the time, but, perhaps because I was too worried about the circumstances of the scan, the insanely loud and varied noises of the machine interrupted my every attempt to visualize anything. Even “whirled peas.” (Given the state of my stomach, that would have been an extra poor choice.) So I just breathed. And waited for status reports via the speaker. 21 minutes to go. 15 minutes to go. And finally, five minutes.

I was still feeling green around the gills when we came out of the cancer center and climbed into a cab to head home, where J’s parents were waiting with the boys – and J still had to cook the labor-intensive stir fry we’d planned to cook in our weekly meal plan, unscheduled MRIs be damned, because I’m a stickler for not letting the boys down, even when I am down for the count. I’m pretty convinced a home-cooked meal can go a long way to making things feel normal… even when I’m not at the table to eat with them.

The cab ride through early rush hour traffic proceeded well at first. I kept my head down looking at my phone, because raising my head caused more dizziness. I looked up when we were approaching the Brooklyn Bridge and I knew I was not going to be okay. I also knew there was nowhere to pull over. I produced the two plastic shopping bags from my purse and stretched them open just in time. The pizza, it turned out, had not been a good idea. I was so, so glad J had suggested I bring those bags.

I tied the bags shut and carefully held them away from any upholstery, and after drinking some water, I apologized to the driver – who had no idea I had just puked. I mean, I’ve always been pretty discreet about it, on the occasions when I’ve gotten too drunk at my own parties and had to stagger vomiting episodes in between saying goodbye to guests. But this was in a cab! I was right behind him! He thanked me for not soiling the upholstery. “Anytime,” I said.

After the MRI, and even before it, I had a feeling in my gut – and I mean this metaphorically, you’ll be so relieved to hear – that my brain was just fine. The weird sudden onset of symptoms did not jibe with the way things went down last year. Plus, it was NOT GOING TO BE COOL to have a relapse on the exact one year anniversary of the tumors showing up in the first place. It would have been almost suspiciously shitty.

Of course, I know better than to expect things to be rosy and well forever. I’ve been invaded, the opponent is formidable and is determined to get the upper hand. But for now – I get some peace of mind about my brain. Next month, my CT scan. Then, bike ride. Then, Italy. I’m living for these things. For now.

After getting my good scan results this morning, and taking a quickie neurological exam that found me just fine, I visited my primary care doctor, Dr S, about my condition. She has pretty much now seen it all, from me. Pregnancy scare (negative, and my thyroid is fine), multiple pneumonias, weird recurrent eczema in my ear… and every time I come see her, a new update for my cancer ledger, because Dr P and her staff are amazing, but they don’t do a great job of keeping Dr S up to date. But Dr S is pretty unflappable, in the face of all the weird shit I bring up.

Today she checked my pulse three different ways – lying down, sitting up, standing. Then checked my glands, ears, tongue and throat. She checked my visual tracking. And then, she had me turn my head sharply to one side and lie down – which as of yesterday, even this morning, would not have felt good. It was fine! She had me repeat this facing the other way. Again, no problem. She decided that I didn’t have vertigo, but rather that I am dehydrated. She based this on the difference in my resting pulse lying down, sitting, and standing. I’d already been sipping Gatorade, because I hadn’t had lunch and it was nearly 2 p.m. and a terrific headache loomed. So I need to drink more water. And eat more salt. And then drink more water.

But because this is Brooklyn, she had another trick up her sleeve as well. In addition to being an M.D., Dr S has studied Chinese and alternative medicine. She once did acupuncture on me, to improve my “lung chi” after a pneumonia. And she has recommended homeopathy when she thinks it will work, but always with a very light touch and making no promises. She suggests it as an afterthought, sort of like when Columbo comes back in when you thought he was leaving, with “oh, just one more thing…”

Today, Dr S needed to know if my dizziness has had me wanting to be under a warm blanket, or wanting a blast of cool wind on my face, “like Leo DiCaprio in Titanic,” she actually did say. I’ve definitely been under the blanket a lot, and I definitely can’t stand DiCaprio. It turns out there are two different homeopathic remedies for dizziness, but you have to have the right one based on your preference. So, after leaving Dr S, I stopped by our awesome local drugstore and plucked a vial of Cocculus indicus pellets off the shelf. Five pellets under the tongue, three times a day. (Saying an incantation is optional.) Here’s hoping for a speedy return of my equilibrium.

Rage, rage against the dying of the light

Pingxi Sky Lantern Festival 2014 in Taiwan, by Jirka Matousek on Flickr, licensed under Creative Commons

Last summer, I was searching for blog posts on gamma knife surgery, and I came across a post by a woman in Texas, Kate Boone, whose metastatic melanoma trajectory was similar to mine.

I came to her blog for the solidarity, but I stayed for the quirky humor. This was someone I hoped I could get to know, felt like I knew already. Familiar, even though I’ve never heard the sound of her voice. I was so relieved to find someone else who was not painting their cancer in pastel hues, or talking about how everything happens for a reason.

I think the hardest and most unsettling thing to accept is that things happen at random. And that things can happen which we cannot look back on and laugh, because nothing – nothing – is funny about someone, especially someone so very young, being all out of chances. Yet that is what Kate’s oncologist has just pronounced.

Tears are falling for you, Kate – here in Brooklyn, and everywhere else your wonderful energy has reached. I’m wishing you an easing of your excruciating pain, and you and your loved ones peaceful time together.

To support Kate and her husband Dennis through this very hard time, please see their fundraiser page. Thank you.

Dumb ways to die

Funny Llama, by iregretjumping on Flickr, licensed under Creative Commons

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.

Annnnnd breathe

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…”

A day in the life

Pinball in Asbury Park, NJ - Plunger, by Bob Jagendorf on Flickr, licensed under Creative Commons

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.

That was interesting

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

Prepare For Major Changes

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.

1969 Ad, Salem Cigarettes, Young Woman In Meadow with Flowers, posted by Classic Film on Flickr, licensed under Creative Commons

Happy April!