Pong, by Andy Rudorfer on Flickr, licensed under Creative Commons

After a day or two of severe ear pain and no hearing – in the right ear this time – I’m finally on the mend… just in time for my left eye to start hurting and being a little irritated!

What this feels like, more than anything, is the game of Pong. The earliest version of the game, with the harsh beeps. The ball is pain, discomfort, unpleasantness, and it ricochets from one side of my head to the other. Now that I’ve had bad right eye, bad left ear,  and bad right ear, I guess it is time for the left eye to have its turn. I’m being proactive and already have an eye appointment for Friday morning. I’m getting good at side effects. (Technically, the ear thing isn’t meds-related at all – just a little added bonus round of awful.)

I got my foot soles shaved down yesterday too. Which was good, because I wound up walking to the ENT and then two miles uphill back home in 97 degree heat. In jeans.

At this point I’ll be really pissed if my nose gets in on the game. It is not supposed to. Back when I was pregnant with Young A, I had nasal congestion for weeks on end, and wound up seeing an ENT who diagnosed me with strep nose.

So really, I guess nothing surprises me anymore.

Now we are four (stage four)

Cake Smash, by Jenny Kaczorowski on Flickr, licensed under Creative Commons

One year ago, September 8, the rug got pulled out from under me. The results to my CT scan of September 2014 were not what I was expecting. The crap had burrowed in deep. “The horses got out of the barn,” I remember Nurse Practitioner K saying to me, but immediately reassuring me that all would be well. (And, upon reflection, that my body was the barn.)

It’s my first metastaversary!!

Except for the extremely rough patch last November, when my treatment was suspended because it induced colitis, I feel that I really have nothing to complain about. I mean, I have complained, bitterly and repeatedly, mostly to J, and Mom, and lately to my therapist. (I could even complain right now: I have an earache.)

But here I am, a year after getting that crushing news, and… I’m alive and bad things are shrinking, and the new drug combo hasn’t even stopped my heart yet!

Would you believe that I was so much in denial about how much trouble I was in, I never actually asked for staging info for my cancer? It seemed to me that info was beside the point, a source of needless anxiety. Tonight, in an ill-advised and pointless Google search to find out all the different places that melanoma can metastasize to, because I was curious (and am now convinced I have bone mets because my wrist hurts), I learned a year after the fact that of course metastatic melanoma is stage 4. Those who know anything about cancer know that there ain’t no stage 5, unless you consider death a temporary waystation before you change forms.

There is plenty I am not satisfied with at the moment. Tomorrow I have to see at least two different doctors and possibly a third, all in order to manage medication side effects. The year, the stress, the medication, has me twenty pounds heavier than a year ago. My anti-seizure medication makes me totally exhausted. I’m hoping to quit that stuff soon.

But I think on this day (once I’m done with everything I have to do) it is necessary to pause, and yes, to celebrate. To life! In its many forms! And its many perplexing stages! And to acknowledge the many loved ones, friends, caregivers, and even random strangers, who helped me get here.

Here’s a song to accompany the post – (lyrics below to explain why I chose it):

Nine out of ten – Caetano Veloso

I walk down Portobello Road to the sound of reggae
I’m alive
The age of gold, yes the age of
The age of old
The age of gold
The age of music is past
I hear them talk as I walk
Yes, I hear them talk
I hear they say
“Expect the final blast”
I walk down Portobello Road to the sound of reggae
I’m alive
I’m alive and vivo muito vivo, vivo, vivo
Feel the sound of music banging in my belly
Know that one day I must die
I’m alive
I’m alive and vivo muito vivo, vivo, vivo
In the electric cinema or on the telly, telly, telly
Nine out of ten movie stars make me cry
I’m alive
And nine out of ten film stars make me cry
I’m alive

Thumbs up, thumbs down

I’m wearing my contacts for the first time in like a whole month! Even though I have yet to see my eye doctor for a followup, I’m ready to stop with the steroid drops and more than ready to stop wearing glasses 24/7 (or 18.5/7, or whatever). However…

The silent scream, by David Alonso/Monocolor on Flickr, licensed under Creative Commons

As soon as one of my “peripherals” gets better, another goes. I can’t hear very well (read: at all) out of my left ear right now. It’s basically swollen shut due to some long-standing eczema/crud that even predates cancer, and seems to come and go. I’ve never paid all that much attention, but my laser focus now that I’m on drugs that can cause any number of random side effects means I don’t let anything slide.

I saw the nurse practitioner at my regular doctor yesterday, and she prescribed some topical steroid cream. I’ve used it three times and I can’t tell if it’s working. J tried valiantly but in vain this morning to find me an ENT to see. I tried to find a weekend dermatologist – same result. Leave it to me to develop these problems not only on a weekend, but a holiday weekend. I talked to Nurse Practitioner K late yesterday afternoon – she didn’t have any particular advice for me, but her empathy came right through the phone and almost had me bawling.

I Doctor Googled the problem, which may or may not be “swimmer’s ear,” and found that I should probably be seeing a specialist about it. Though it isn’t clear if that’s a dermatologist or an ENT. And it may be that this dubious steroid cream may not even be reaching the spot it needs to. One thing I did learn from Googling is, I should really stop using q-tips.

We are heading out to lunch now at the house of one of Young A’s classmates. I hope that social interaction beyond the four of us driving each other slowly insane in a small apartment will be a good thing… even if I have to keep my earlobe tugged just so, so I can actually participate in the conversation. Maybe I can pass it off as a sort of tic, like people who bite their nails or twirl their hair. I’m not quite in the mood to explain a cruddy ear today.

On a positive note, thanks to a friend’s intervention, I think I have the perfect location for a writing retreat I want to take next month. Now I just need to get a good result to my MRI, and all systems will be go.

The day after the first day

(I should look up the Latin for that: the opposite of penultimate.)

This morning was a bit less organized, with me not actually getting out of bed until 7:20. That won’t do. I also didn’t realize that J was fasting for bloodwork, so he wasn’t getting up. Still, got the kids to school in plenty of time. But, more yelling and nagging than I would have liked.

I raced through making far less elaborate lunches (grilled cheese for one, PB&J for the other) and found the time to make my daily kale-shallot-egg scramble. (It tastes so good I can almost forget how healthy it is.)

It was my day to visit the shrink. I decided I’d better have an agenda so I wouldn’t just ramble on, and wound up exploring a lot of territory with her today. It turned out that the question I had for her, the thing that has actually troubled me about myself for years now, is no concern at all. I won’t go into it, except to say that after she answered me in a reassuring way, she went on to make a recommendation so completely beyond the scope of anything I could ever imagine a mental health professional saying that I burst out laughing. It was inappropriate, morbid, and funny as hell.

It seems to me we’re both being really cautious about the relationship we cultivate, because I could easily see us becoming friends. But then she couldn’t be my shrink anymore. And I need a shrink right now.

After the laughs, there was time to talk about my upcoming cancerversary. While my melanoma was discovered in April 2013, September 2014 was when they found the lung metastases, so for me, that is the more significant anniversary right now (since I’m still dealing with it). I’ve been on this trip for almost a year. A long, strange one, which has taxed and overtaxed me and my loved ones, given us moments of despair followed great shovelfuls of hope and relief.

On the 17th, I’ll have my next brain MRI, and get the results a mere hour later from Dr K. (Excellent news for someone like me, who prizes instant gratification.) I don’t really anticipate hearing anything bad, especially now that I’m on the dynamic duo of meds. But hey, I was wrong before, a year ago. Here’s hoping I won’t get fooled again.

Here are some random shots from my walk in Manhattan today. (À propos of, no other illustrations today.)

First day

I dropped the kids off at school this morning. They will be there until 4 p.m. I am free until 4 p.m. FREE. Well, not exactly. I made the mistake of asking what they’d like for dinner tonight, and they chose the most labor-intensive meal imaginable – a chicken broccoli stir fry (with a few dozen other ingredients we always throw in). Soon, I’ll need to go shopping for that. But for now – I’ve been to the gym and then through the shower and am lying in bed in the air conditioning claiming radical self-care as the reason for my inertia. Also, it’s brutally humid out. Going shopping and coming back will necessitate another shower. And then all the prep and cooking.

I’m trying to pace myself. So much need has built up inside me for time to myself, meditative time, space-out time, writing time, professional development time. I can’t possibly get it all done the first day. So let’s say today is about getting the kids back on track – which they did, admirably, this morning. And also about getting me back on track. J is still out sick from work with shingles. (He’s feeling much better, but is still contagious to the general public.)

I spent this morning in J’s shoes. Since April – no, actually, since February when I started working – he’s been carrying the family on his shoulders. Shopping, cooking, dealing with all that stuff. It is no wonder he was felled by a stress-induced illness. And yet I never once heard him complain about what had been dumped on him. (Maybe just once.)

I was hopping around the kitchen getting the kids’ lunches ready. As usual, they were too elaborate (salmon and edamame for Young A, tortellini for Young J). Even though I’d gotten up at 6:45, it still felt very stressful. And there was absolutely no time to think of breakfast for myself or J. Young J has stepped in, and decided that he can handle making the kids’ breakfasts. He’s done it two days in a row. I love him for it. Even when he leaves little globs of jam on the counter.

At the gym – my second visit this week – I felt all the soreness from my Monday workout and added new soreness on top of it. It was the most welcome pain imaginable. But, as I approach the one year anniversary of my metastases… I can’t help feeling a little tentative about any sort of routine I may want to establish. Obviously I want to get stronger, lose weight, and be fit. I want to reinhabit my body in a way that makes me feel good, not disgusted or judgmental. But I also can’t help feeling like this will all be knocked to hell at any time.

My kids have become big fans of the National Building Museum. When we are in DC we usually visit. At an exhibit there that’s geared towards kids, there is an interactive segment that seems a good visual metaphor for the way I seem to live my life now:

Or, in the immortal words of Chumbawamba, I get knocked down. But I get up again.

(I can keep hoping not to get knocked down, though, right? Resilience is a welcome resource to possess… but I don’t know if it’s inexhaustible.)

And now, a nap.