Silent mode

Macro Rust on a Micro Bus, by Wendell on Flickr, licensed under Creative Commons

Here we are in midsummer. A lot of things have already taken place (namely, Young J and Young A gone off to sleepaway camp for the first time, one back already and the other returning this weekend). I have cycled through giddy feelings of sudden freedom, audacious frittering-away of precious free time, and then the difficult readjustment to parenting mode. Arguably, we were still parents while the kids were away; it’s just that that type of parenting was exclusively sentimental and involved little more than hunting for the day’s latest photos of the boys, or sending them fun letters and emails.

I had a lot of work the first week they were away. It feels good to be getting paid on a somewhat regular basis. It’s been so long since I was paid for anything, I nearly forgot what it was like. Which is sad, because I used to have such a strong identity as a worker. I filed income taxes from age fifteen on. At the end of this year, it will be a decade since I left the comfortable, cradle-to-grave type job I moved to New York for, and since I was at that job for a decade, that means my 20th anniversary of living in NYC (which I like to call an Appleversary) approaches, too. So much to think about.

I joined a melanoma community on Facebook which is vibrant and quite wide-reaching. In recent weeks there has been a constant drip of bad, sad, and simply terrible news there. I find myself trying to negotiate being present there with self-preservation. Especially hard when the people you have identified with the most experience setbacks, or the end of the line altogether. Two very young boys lost their mother to melanoma today, and I wept when I read the news. 

I wept, and then I reached for the one thing that has never let me down when I feel desperately sad — a notebook. I hadn’t written longhand in ages, and it was the feeling I needed. Not the deliberate click of keyboard keys. More of a sweeping action, one that has never failed to help me generate new ideas. And I started something. I’m not sure what it will be yet, but I will definitely fill up the notebook with it.

I have kept up with my monthly check-ins on my Seven Year Plan, the one I came up with last December upon turning 45. I am not always 100% pleased with my progress, but I am also much less stern with myself than I used to be. The temptation to measure my progress with borrowed yardsticks is as strong as always, hard to undo a lifetime of that kind of behavior, but I’m doing what I can. And I am learning that I can do a lot.

Tonight I went to see Dr. D once again. I had a few days of waking to what seemed like a Vaseline-coated lens in my left eye. The eye looked red. I stopped wearing my contacts for a day, but things didn’t improve. Finally, today, I acknowledged defeat and called for an appointment, which I was given at the unfamiliar hour of 6:30 pm. I also hauled out my eye drop collection and squirted some Prednisolone drops in the bad eye a couple of times. The instant relief diagnosed my condition even before I’d had a chance to see Dr D. Iritis again, once more, with feeling  (actually, this time, with no feeling). The pressure in the affected left eye was half what it is in the healthy right eye. I can somehow see perfectly through both.

Back to steroid eye drops every two hours for a week, but I don’t need to dilate the pupil, which has me feeling strangely euphoric. I mean, yeah, I have side effects! But they are entirely familiar! And I know how to manage them myself! Also — because these side effects come from Tafinlar and Mekinist, I’ve taken the day off those! Which means I can have a snack after 9 pm! So right now I’m off to figure out what that might be, and then to watch another episode of Twin Peaks with J. A blessedly ordinary night.

Interstice

Close reading of Beethoven

We are in that tricky interstice between school year and summer plans. The children alternately delight in and chafe against this lack of structure, and today was my turn in the chafing dish. Luckily, we’re visiting family, and I signed up Young A for a couple of swim lessons in the hopes of getting him more comfortable in the water before camp starts. He’s a tough nut to crack, there’s clearly something that bothers him about swimming, but he won’t just tell anyone about it.

Young J came to the pool with us today, and while Young A had his lesson, he swam around and I think dropped his habit of swimming with fingers pinching his nose. So that was a breakthrough. In the car on the way back, I got Young A to at least agree to tell his swim teacher why he’s not comfortable, if he absolutely can’t participate. We’ll see. I think that lack of easy access to water, combined with our failure to prioritize swimming as a skill, are both at play here. (Depending on how in need of self-criticism I may be at a given moment, one or the other factor looms larger.)

Last night, after the kids were in bed, and I wanted nothing more than to go to sleep myself, but couldn’t due to timing of taking my meds two hours after eating, I sat down at my mom’s piano. A lot of the music I studied during my twelve year piano career lives here, and last night I found myself going back to a Beethoven sonata I had played in a competition in high school. The way I played it last night was a total mess. But my parents were kind, as always (and from another room, the wrong notes are less apparent, especially with the dishwasher on). I found myself fascinated with the annotations on the score, which mostly came from my long-suffering teacher, Mrs H. I didn’t exactly take her teaching seriously, not for years. I don’t know how she or I stood it. I used to record my lessons, at her request, but I rarely listened to the recordings, because of all the lectures that awaited me on playback. The silence after her asking me if I really wanted to be there (I did; I didn’t). And those dollar signs — her last-ditch attempt at a semi-fun way to get me to correct some repeated errors in the Beethoven. If I didn’t correct them by the date in question, I’d have to pay her a fine. I don’t remember how much the fine was, but I must have shaped up somehow. I played the sonata at the German Embassy sometime in high school, and received an Honorable Mention. That must have been a Pyrrhic victory for Mrs H, with the teeth-gnashing she’d gone through to produce it. (May Mrs H rest in peace.)

Recently a couple of cosmic signs have made me realize I’ve probably got to get back to the writing I’ve been neglecting for years now, the mode of expression that was my first love — poetry. It has surely been nice to have the much broader readership that writing autobiographical nonfiction in prose affords. I know those of you who follow this blog might find it difficult to follow me if I were to start posting poems here (and if I were to publish them here, I pretty much couldn’t send them out anywhere else). 

So I’ll have to unfold some secret temporal fold-out in the center of the book of my life, one I haven’t gotten to yet and which may require a letter opener to slit open, and do more than one kind of writing. My writing here has taught me a lot, and I know it has conveyed a lot, and it may have (and still may) help/ed people who have been or are or will be in my boat, cancerwise.

But my life story has many, many notes, it has passages I am still trying to get right, it has dynamics that need finessing. So I need to start practicing again. And even listen to the uncomfortable silence that follows the difficult questions.

Enchanted

I flew on the good news of my scans to New Mexico. It was a memorable, exhausting week. We rode the rapids, we rode on horseback, we hiked, and to cap it off, we immersed ourselves in art.

It was hard to come back, and not only because our flight deposited us at midnight at LaGuardia Airport, which is hell on earth these days due to construction. It was hard to say goodbye to a fantastical volcanic landscape we’d fallen quickly in love with, to delicious spicy food, to sunshine without humidity.

Also, hard to return because it’s the time of year that everything overturns, for us and for the kids. There are less than two weeks left in the school year. The kids sense this and they start freaking out right about now. Not only restless energy, although there is that. There is also the fear of the unknowns of summer, magnified this year because they are both leaving home for the first time: Young J for a whole month, Young A for two weeks. They’ll be at the same place, which I’d like to think will be a comfort, but the way they’ve been lashing out at each other lately, it’s hard to be sure. What if Young A is in the throes of homesickness and goes for a hug and Young J refuses? (Actually, their dynamic tells me the opposite is more likely.) I can’t possibly control things like that, but I’m allowing myself to be heartbroken in advance if it does come to pass. (And I’ll be much relieved when it doesn’t.)

I have some work, so that should hopefully keep me occupied and out of trouble while the kids are away. J and I may take a short trip, but we haven’t yet made any plans. The task of acquiring and labeling 20 pairs of underwear and socks each for the boys is too daunting for me to think beyond it.

But the last label will get slapped on the last pair of underpants, the suitcases will get zipped up, and the boys will occupy a space separate from us for a time that will probably feel simultaneously endless, and not quite long enough. Just like our recent vacation. Just like life — whether it is allowed a dénouement at a typical pace, or whether it slips by more quickly, like those last grains of sand in the hourglass, getting pulled through in a hurry.

One last shameless plug for our cancer immunotherapy fundraiser: the walk is this weekend. We’d love your support. Thank you.

Another tour

My scans were clear.

On Monday, I had the scans. They lasted all morning, because even though the CT people were on schedule, the MRI people were not.

While I waited for the CT scan I rolled my eyes along with another woman waiting, and then we started chatting, and one thing led to another and I’d found a fellow melanoma patient. Who flies halfway across the country for her scans and checkups. She’s a couple of years farther into this than I, and I think she said that she’d probably be going to six month intervals for her scan. I thought to myself, #cancergoals I had hoped we would run into each other again, but our schedules didn’t match up. I did manage to mention this blog to her, however.

After the CT scan and before the MRI there was some of this, to break the fast.

Don’t envy me too much because I had an IV port in the crook of one arm, so this was very hard to eat.

I waited forever for the MRI. But I had eaten! And had coffee! And brought a good book! And a phone charger!

My time in the tunnel passed quickly. Except that enough time had passed between the CT scan and the MRI that the contrast dye from the CT scan had already begun wreaking its digestive havoc, and there I was on the MRI table. And so, for the first time, I asked for an update. But I’d managed to hold off doing that until there were only seven minutes left on the half hour.

Dr K had more to say about the amount of hair growing on my head than any activity inside my head. He’s a man of few words, so when he murmurs, “Huh. We’re at 23 months,” it isn’t just a restatement of the obvious. He’s quietly marveling. I have been around him enough to sense that, now.
After getting the good news, J and I kissed in the hallway and I started making the usual phone calls, sending the usual texts. How lucky I am that this can be “usual.” I know very well it could be Otherwise.

This always happens when I leave the hospital.

I do realize this makes it seem like scans day is just one long lovely meal. Just remember the whole reason this happens at all is CANCER. This spanakopita is pretty damn good, though. And easier to eat than the crepes, because by this point the IV was out.

It always takes a couple of days to get the CT scan results for the rest of my body. And it is never easy to predict what things will be like in Dr P’s office waiting area. There have been times I find it completely empty, but today was not one of those times.

Today cancer patients of every stripe sat cheek by jowl, and family members, and interpreters, and even one patients interior decorator, or at least that’s how it sounded. A very rich sick woman was going over the building plans for her house. She was literally agonizing over where the pool should go. In this day and age, her attitude is such a shock, it is so hard to situate. She spoke for a good 45 minutes about the plans, and the type of ceramic stone she likes, and her differences of opinion with the architect. And guess what I didn’t have with me today? A good book. A phone charger.

When I went back for the blood draw, my favorite phlebotomist was not there. I inquired after him, and was told he had left. Hello, wherever you are, Phlebotomist B. I miss you!

Later, when N, the assistant, took my vitals, he seemed flustered, and told me that five different doctors were seeing patients in the office today. Not all of them melanoma doctors, either. This meant that in the tableau of suffering that came to surround us in the waiting room, there were people with other cancers, including the baddest of all (pancreatic).

When a patient was wheeled in on a stretcher, I averted my eyes. But when another arrived in a wheelchair and holding a bucket in his lap, I quickly steered J to the other side of the glass partition. How dare they? I was thinking. How dare they turn my waiting area into a waiting area for REALLY SICK PEOPLE?! (Clearly I still have some more work to do before I can consider myself as having fully embraced cancer-dom.)

Into Hour Three of our wait for test results, we got a bit punchy in the exam room.

Mirror, mirror, on the wall / Will we ever get the hell out of here today?


At last, Nurse Practitioner Kathy came in. I’d passed her in the hall on the way back from the restroom, and she broke the good news about my scan to me right there. Then we went into the exam room, and with the door closed, we were able to have a bigger celebration, a bigger hug.

I had some things on my mind, though. First off, I asked for a drug holiday. We’re traveling soon, and the constant refrigeration required by Mekinist isn’t easy to achieve while en route. Last summer’s eye debacle in Italy proved that if I’m going to suspend taking one of the meds, it is far better to suspend both. My holiday was granted, after a consult with Dr P.

My next question was the one I’ve put off for two years. I was pretty sure I knew the answer to it, but a big poster in the exam room, which listed staging criteria for cutaneous melanoma, prompted me to finally just ask. “What stage was I? When? What stage am I now?”

It’s weird, right? That I didn’t have this information right at the point where my disease showed up or got more severe? But in my case, I’m not sure I needed that information back then. I felt so completely reassured by the course of treatment that was proposed to me, I didn’t seek a second opinion, and I don’t regret that now. I was and am lucky the treatment works.

Kathy was very, very careful with this conversation. I could see her weighing her words thoughtfully — one of my favorite things about her. She asked me what I understood about staging in metastatic melanoma. I told her that I had seen and read and heard enough to understand that stage isn’t all that important on its own, that response to treatment is important, and that one cannot use another person’s yardstick to measure their own progress.

Kathy seemed reassured enough by this to tell me that from the moment the disease entered my lungs, I have been at Stage 4. And that regardless of my progress in treatment, once you have been at Stage 4, you stay there, in clinical terms, forever. You can be Stage 4 with no active disease. That is what I am today.

So there it is. There is no wiping the slate clean, ever. But there is an understanding that this is not the only important thing written on the slate.

In Judaism, there is a specific prayer that is recited in public when one has survived a potentially life-threatening situation. This action I took today, it felt somehow adjacent to the impulse one might have to say that prayer. Now that we’re on the other side of it, let’s find out what it was called. So next time, we can call it by its name, if there is a next time.

I’m renewed for another tour of duty on this planet. I’m headed to a different part of the planet at the end of this week, one known as the Land of Enchantment. And I am fully ready to be enchanted.

Scanxious

That blue, though

I have scans soon. Day after tomorrow. Been a while since I had a scan double-header. I am not sweating the small stuff, like what time and where I will finally get to eat lunch on scan day (I fast before the CT scan, but have the MRI immediately after, so I may or may not get a chance to eat in between). Usually I get through the last day or two before a scan thinking only of these trivial things.

But something got tripped, a switch got flipped, and I’ve been anxious for days. I’m not sure exactly what it is that changed since last time.

It may be that it has started to sink in that I’ve had a long run of good luck on my meds, and that luck may not be infinite. It may be that I’m finally emerging as a less self-involved cancer patient, and once my eyes opened to the plight of others, they stayed open. (No more sleepwalking through Cancerland!)

Yesterday, for much of the day, I was paralyzed by these thoughts. Today, I was fairly flattened by them. Today brought an email from a correspondent of mine from across the ocean, who has been traversing a similar path, and who found me through my writing here. She is a lovely, spirited and funny young woman, who has also had to fight off melanoma multiple times since the age of 15. I have so much respect and admiration for her. And now, she has all of my healing thoughts, and prayers too, after some recent bad news. 

I’d summon all the pharmaceutical powers that be, if I had that kind of influence, to throw everything we know at her disease and make it be gone for good. I’m thinking of you, my friend. I’m pulling for you. I can still pull harder.

HMD

Food Basket’s parking lot was empty.

I should start by reiterating what I said last year.

(The red one is tuckered out from a sleepover. The blue one slumped over moments later, in sympathetic slumber.)

We’re on the road to a family gathering. Holiday traffic is bad, especially on a day as chock full of obligation as this one.

I’m all done planting for the year. I just need J to drill some drainage holes in my already-filled new planters. I’m never one to think that far ahead. But I’ll clean the dirt off the drill bit once he’s done.

It helps me, as I have said before, not to be a long-range planner. I have scans in a week’s time. Both MRI and CT. I get the MRI results immediately, and then get to twist in the wind for a couple days before I see Dr P.

But! I have things to do in the meantime, course I do. Get Young J packed for an exciting overnight trip with his class. Enjoy a visit with my mom. Attend a special event in Young A’s class. Do some translation work a friend kindly passed along. 

All the living you can do in a week. Even when the gloomy inevitable lurks everywhere you look.

Come to Me. But don’t go into the light!

I’m steadfast in my refusal to take things all that seriously.

Pre-existing conditions

My therapy awaits

I finally cried today. I’d been in the car driving for half an hour in search of a parking spot. That wasn’t what triggered tears, though. What triggered the tears, on this beautiful spring day, was the feeling that I’m suddenly so vulnerable, legislatively so. I’ve been angry since Inauguration Day, but angry in a global sense. Today, I feel personally attacked. There are no reassurances that lawmakers, with their own exceptional health care plans, can provide me right now.

My life has become a pre-existing condition, and a change in the current law, followed by a thoughtless sweep of a pen, could lead to a chain of events in which it is decided that my life is no longer worth preserving. That it is too costly to keep me around.

There are millions just like me.

I bought spring flowers for my tiny balcony yesterday. Gardening is an act I commit every spring, even though I don’t know the first thing about it. I’m getting my hands dirty today. I’m getting the job done, even though it puts me out of my comfort zone. Keeping these plants alive becomes my priority. Failing to keep them alive will feel like true failure.

Legislators would do well to follow this lead. Leaving your comfort zone, valuing life in a far more radical and tangible way than simple lip service, these things take some courage.

Today, once again, we’ll get to see who lacks it. We will take note. Remember their names.