Nighttime meditation

Still life still alive
Still life still alive

I’m exhausted and I’m suddenly deluged with translation work and today was J’s birthday, which was super fun. Birthday Season has now come to a close for us. It lasts from December through March (with a slight lull at the beginning of the year). I’m not sorry to say goodbye to all the sweets.

Seeing my aunts and uncles and cousins yesterday was restorative and made me feel solid again. My cousin A gives the biggest, strongest bear hugs imaginable. They enfold you and squeeze hard, and like a blood pressure cuff, they continue to squeeze. I love those hugs. I told A yesterday that they are more like a hugging meditation.

I’ll be working on deadline for a television program all day tomorrow, so I’m trying to get to bed early. Just took all those pills in a single swallow. I think I have managed up to seven or eight at a time when my situation has required it. And earlier today, I took my two Tafinlars with no water at all. I’m a virtuoso pill swallower, definitely beyond the intro class (I even just learned a new trick on my phone’s meds app). The other day I was at Dr P’s office for a checkup, and I asked her offhand if there was any harm in swallowing all of my pills at once. She said there wasn’t.

And so I do. I swig water and they all go down the hatch, and as I’m falling asleep I imagine their breakdown and their course through my bloodstream to do their specific work. Three of them penetrate the blood-brain barrier, and keep my tumors from growing. One keeps my digestive system from going haywire in response to the other three. 

And one of them is just plain old Tylenol. My back hurts a little, but the real reason I’m taking it is, last night I didn’t sleep so well, and tonight needs to be different. It may have already been proven effective against existential dread, but I haven’t followed up lately to make sure. On the off chance this was proven wrong, I am not sure I want to know. The closer we get to April, month of my diagnosis in 2013 and my brain metastases in 2015, I guess I get a little nervous. (“What good is cancer in April? / No good at all,” foreshadowed Lou Reed.)

The cat figurine on the nightstand showed up sometime in the past couple of days, and it also seems to be on the lookout for existential dread, so I’ll keep it there for now.

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Reenactment

I’m exhausted after crossing state lines by bus today. My Uncle J (of blessed memory) just passed away, and the funeral is tomorrow. My cousins who don’t live in town are making their way here now. We will converge at the cemetery in the morning, and there will be a lot of hugging – my mom’s side of the family is populous and loving.

Tonight I’m on my own, sleeping on the twin mattress that Young J usually sleeps on. But it’s in the living room for a change. My parents’ living room, which used to be my paternal grandparents’ living room, when they lived in this same apartment. And I’m right about in the spot where I would sleep on their couch, when I slept over, when I was ten or twelve. I loved exploring their bookshelves and closets, looking at old photo albums, even seeing their his-and-hers dentures in cups in the bathroom. 

My grandparents moved to this country late in life, and needed to learn English, so sometimes I answered spelling or grammar questions for them. It was exciting to me when my grandmother was reading one of my favorite Judy Blume books, Tiger Eyes. 

Tonight I’m staring up at the reflection of the night light on the ceiling, and thinking of all the things that came to pass between that last time I slept at my grandparents’ house, and this night. When you do that things tend to whoosh past, like a newspaper on microfilm. I wonder, is this how it feels when life ends? Does it clunk to an end, like you’ve reached the center of a film reel?

I’m also thinking of William Carlos Williams’ poem, so I’ll leave you with that now, as I drift off and find out whether I’ll have the same dreams ten year old me had.

The Last Words of My English Grandmother

There were some dirty plates
and a glass of milk
beside her on a small table
near the rank, disheveled bed—

Wrinkled and nearly blind
she lay and snored
rousing with anger in her tones
to cry for food,

Gimme something to eat—
They’re starving me—
I’m all right I won’t go
to the hospital. No, no, no

Give me something to eat
Let me take you
to the hospital, I said
and after you are well

you can do as you please.
She smiled, Yes
you do what you please first
then I can do what I please—

Oh, oh, oh! she cried
as the ambulance men lifted
her to the stretcher—
Is this what you call

making me comfortable?
By now her mind was clear—
Oh you think you’re smart
you young people,

she said, but I’ll tell you
you don’t know anything.
Then we started.
On the way

we passed a long row
of elms. She looked at them 
awhile out of
the ambulance window and said,

What are all those
fuzzy-looking things out there?
Trees? Well, I’m tired
of them and rolled her head away.

Lost time is not found again *

The week was lost to illness, but at least this time it wasn’t mine. Young A came down with a fever last Friday, and it lasted a full week. Young J joined the fun on Wednesday. 

The kids were also off school Tuesday for a blizzard that turned into a colossal ice storm — not a fun snow, but the kind of event that just unleashes ice down which then stays put for ages.

Today, at last, Young J got his nose swabbed, this being the result:


We’d been fearing strep (and Young A was taking antibiotics for it) but we were wrong. The flu vaccine fell short this year, it seems. Now J and I are on Tamiflu to try to save us from kids’ fate, and Young J is on it to hopefully shorten the course of it. The Internet helpfully taught me that Influenza B is present only in humans and seals. I need to tell this fun fact to the kids. Young J briefly sounded like a seal last night. (Do seals with the flu sound like people?) One thing is clear: My kids do not get sick often enough (knock wood). They don’t have a lot of coping mechanisms, and the first few days home they were incredibly restless (before I gave up on any rationing of “screen time”).

I had my own little medical drama this week when my cancer med refills failed to arrive due to the ice storm:


They finally showed up two days late, and luckily I only missed one dose. Next time, I’ll plan ahead for the unexpected, like an ice storm in April. Of course.

It isn’t fun to think about medical fails like this year’s flu vaccine. It gets me thinking about how far we still have to go before people can stop dying from what I’ve got. I’m thinking of Emma Betts in Australia tonight. Her father has been updating her Facebook page, because Emma is now in hospice. She and her husband just celebrated their third anniversary.

I’m also thinking of my overseas correspondent, whom I checked in with earlier this week after a few months, and learned that she is being treated with immunotherapy for metastases to her liver. I’m thinking of her as well.

Seeing a photo of Emma and her husband, with a cake the hospice staff prepared for them, took me right back to my and J’s tenth anniversary, when I was so sick from ipilimumab-induced colitis. I couldn’t have known then that I’d still be here now. 

Every day I am still here requires a good deal of mental effort, because there is always the sense of things suddenly going wrong again. That is what PTSD will do. Sometimes, it’s a sword that dangles jovially above my head, in my peripheral vision. At other times, I actually might look up, because I’m sure it’s a giant anvil coming down to flatten me, like in the cartoons of old.

I got to speak with Nurse Practitioner K today, because I wanted to be sure it was safe for me to take Tamiflu. Whenever I call the office, I’m very conscious of the time I’m taking away from patients who are there in person, and I try to get off the phone as quickly as possible. K isn’t like that, though — she asked how the boys were doing, how I was. I’m so lucky to have her caring for — and about — me.

It’s the weekend at last. Most of our plans have been undone by the family plague (I feel myself almost on the verge of succumbing to flu B, now that J is on the scene to take over kid duties). I can’t say I mind having no plans. We can all sit together in the cluttered living room and (re)discover another great old film together. (This week, we watched Hello, Dolly! and Desk Set.) Or play Scrabble, Young A’s latest obsession (he’s awfully good). I love to travel with my family, of course, but if I had to go tomorrow, it is these scenes of messy domesticity I would miss more than anything.

If you’d like to sponsor our 5K walk for cancer immunotherapy research this year, you can do that here.

* Lyric by Bob Dylan.

We’re Number (4)1!

counting IIII (cc), by Martin Fisch on Flickr, licensed under Creative Commons

So someone compiled a list of melanoma blogs, and this one right here made the cut. I’d be more flattered, but it is a Top 70 list, and this blog comes in at number 41. I’m sure there was a highly scientific methodology for the ranking. If you made your way here from that list, hi! You exhibit a lot of stamina, getting this far down in the list. Stamina will serve you well.

The fact is I wouldn’t even want the top spot. Getting that might mean any number of things, none of them good in my mind. It would mean I did nothing but cancer-blog all the livelong day. It would mean I was still in a very bad place with my illness and fear of mortality, and probably still on Decadron, which was great for making me sleepless and manic and prolific (and terrifyingly hungry) but awful for every other aspect of my life. It would mean that melanoma had won out over everything else.

So upon (very brief) reflection, I graciously accept position #41 on the list. I don’t think I’m the best, but I might be the best “Sideshow Masquerading as Melanoma Blog.” When that particular ranking comes out, I’ll be sad if I’m not in the top spot.

And, in the interest of making this post the slightest bit useful, I would heartily recommend that you follow the blog at #22, which is chock full of useful information for patients, including spotlights on the latest in the medical literature.

Pressed

Panini, by kattebelletje on Flickr, licensed under Creative Commons

It’s been a while. I didn’t do my customary post on Young A’s birthday. He’s seven now, although I think he’s still shedding some of the skin of six, like the molting snake we saw in the Reptile House at the Bronx Zoo last week.

The boys were off school all last week, and Young A’s birthday turned into a marathon, multiple celebrations that involved meatballs, Lego, the circus, sushi, bowling, and finally, tomorrow, at long last, culminating in his school celebration, which is done in the Montessori style, with revolutions around the Sun and singing and a photo from each year of his life. There are so many photos now.

This morning I was up early to make it to a mammogram I had scheduled for very early. I’m starting to assemble a rough Timetable of Medical Hours. Anything from about 8 p.m. through midnight is the time for a medical emergency. From midnight through about 5 a.m. is the province of childbirth. Starting around 5 a.m. is the time you report for surgery (such as gamma knife). The diagnostic testing hours begin around 7:30 a.m. (although that feels a bit early) and run until about 11 or noon, at which point you take a lunch break, imperative if you fasted for the test. The afternoon is a time of dental cleanings, and that takes you (with a break for dinner) back to the hours of the ER. Obviously, any of this can happen at any hour. I’m just trying to have a little fun.

Going for a mammogram is hardly a blip on my radar, but I find myself nonetheless kind of blue today. A fellow melanoma blogger in Australia, the author of the hugely popular Dear Melanoma, is out of treatment options, and is moving on to palliative care. She was diagnosed at age 22, and is now only 25. I’m so sad and angry. Anyone getting less of a chance at life than I have had sends me there. Her advocacy work on behalf of melanoma patients — particularly in a country where there is such a high incidence of the disease — is worthy of praise. How I wish there were some hope for her, some eleventh hour reprieve.

I’ve been trying to make headway on various projects,  but sometimes things pop up to the surface unexpectedly. There’s a song I’ve been listening to a lot lately and I just decided to try and learn to play it on the piano (and sing). My years of classical piano study did not include even a moment of training in this area, so I’m winging it, asking J questions… and trying not to cry. Something about sitting at the piano and playing and singing at the same time is making me cry every single time. Now, I do love a good cry. Just not when I’m trying to make music. I happened to notice the chord sequence of the song includes D-E-A-D repeatedly. Odd. (J says it’s a pretty common sequence in popular music.)

It’s another warm spring day here, and J and a new musical partner are working on stuff in the living room. I’m going to post this and move on to any number of other things (like the writing that this writing is postponing). The blue-ness can stick around, but only if it doesn’t get in my way.