goonies never say die

One of the inevitable questions you are often asked when you are diagnosed with a historically terminal illness is ‘how often and in what capacity do you think about death?’ The question is usually worded more gingerly, or more awkwardly, or with eyes cast downward, and I usually gauge my answer to the audience that is asking. But since I’m sure many of you who haven’t wanted to or been able to ask are wondering, I will try to break it down…

I don’t think about death, itself – like, the moment when it happens.  I mean, what’s the point?  Just because I have cancer doesn’t mean I can’t employ the ‘I could get hit by a bus tomorrow’ philosophy. I also don’t really spend any significant amount of time thinking about what’s to happen to my soul or such when it gets absorbed up into the universe or whatnot.  I mean, of course I’ve thought about the spiritual aspect of death many times over… c’mon, I indulged in my fair share of the dead-tour-conducive substances, the kind that compel you to ponder those things.  The conclusion I came to many years ago about my spiritual beliefs is simply that I do not need to define or give name to them. I feel my spirituality, and I embrace the people, places and experiences that make me feel more spiritually connected. That’s all I need in life. In death, I suppose, que sera sera.

As I stand in a face-off with my mortality, what I see staring back at me is the world without me in it.  I think about the pain of the people I would leave behind. I imagine my sister, laying in bed, having a one-sided existential conversation with her ceiling. I imagine my best friend belly laughing while she tells her three teenaged boys about her coming-of-age shenanigans with Aunt Jen. I imagine one of my cousins, at some holiday party years down the road, shouting out, ‘everyone in the kitchen – now! we’re playing a few rounds of cards against humanity in honor of the game nazi.’

I know that I am a gift to the people who love me, just as they are a gift to me.  I know I’m a gift because I’m fortunate enough to be surrounded by people who tell me such, generously and often. I know that, if melanoma takes me down, there will be a hole in their world, and it breaks my fucking heart.  But remember… this is all just to answer the question of ‘in what capacity’ I think about death when I think about it.

As for the other part of it – the ‘how often’ I think about it – that’s a different story.  Sure, proportionally, more than I did before March 25th, before the bomb. But I still spend almost ALL of my time thinking about life. I am making my truest effort to spend most of my time in the present. I have to. And I’m finding that the present has a lot of good shit to offer.  But, you don’t get cancer and suddenly wake up and stop thinking about the future. My career goals have become more important to me than ever. I am buying a car with a 36 month payment plan. I am RSVP’ing to weddings. I am setting long-term educational goals with my students.  I am still gonna swim with goddamn whale sharks. I guess it’s silly to say ‘I refuse to die’…  but shit, you won’t ever catch me dyING.  Goonies never say die!

Now, for those of you who have been skimming thusfar to pick out words like: treatment, meds, tumors and scans, let’s get to the meat. I have, in my possession, an orally administered drug combination of Vemurafenib (BRAF inhibitor, brand name Zelboraf) and Cobimetinib (MEK inhibitor, brand name Cotellic). Let’s adopt the nicknames Vem and Cobi, shall we? These drugs are in the same class as the drugs whose wrath I endured over the last two weeks, but they have different properties that we’re hoping are a better fit for my particular biochemistry. And we’re hoping like hell that whatever it was in the Dabrafinib/Tremetinib combo that caused anaphylaxis (which is what the fire ants in my throat turned out to be) lies in the unshared portion of the Venn diagram.

With different drugs, of course, come different potential side effects. Fortunately, fevers aren’t as common with these drugs as the others. The Vem/Cobi literature I have read lists a standard slew of chemo-esque side effects – nausea, GI issues, fatigue, vision issues, rashes, and hair loss or alopecia. Just FYI – if I lose my hair, I’m am gonna have fun with it… gifts of wacky wigs and funky scarves will be welcome (but don’t send any just yet… remember how we don’t do well with jinxes…)

Then, there’s the biggie, the one that’s pretty much a guarantee…. Vem and Cobi are essentially going to turn me into a vampire.  Keep in mind that Vemurafenib is a drug name that’s been bounced around since day one of the metastatic diagnosis. This is the drug that my Korean oncologist would have put me on as a first-line treatment had I stayed in Busan for treatment. Melissa and I have discussed this drug many times. And so I’ve been aware of (and have always been horrified of) the level of photosensitivity that is brought on by this drug.

What this means is that the sun is not my friend. I will have to cover every single inch of myself in sunscreen even on cloudy days… to the point that washing my hands will require an immediate re-application down to the calluses on my fingertips. Without protective balm, my lips will blister. I will be replacing my $5 venice beach aviators with UV protective sunglasses. If you happen to run into me and I’m wearing shorts… rest assured my legs are covered in half an inch of the top-shelf invisible zinc I just scored. I can tell you right now, without even having experienced it yet, just how fucking much I hate this side effect. A bike ride on a gorgeous summer day is my jam of all jams. I suppose I’ll enjoy my bike rides just as much while rocking the ‘floppy hat boho shirt santa fe crystal-wielding art teacher’ look.

So, I saved the best for last. I figured I’d leave you with a spotlight on the one shiny little gem in all this muck. The NYU radiology report from those horribly misread scans finally came back. Turns out, the tumors are, in fact, measurably smaller, meaning that the BRAF and MEK inhibitors were actually starting to work in those two weeks I was on them. Hopefully the pills I pop for the first time tomorrow morning (as my mom sits beside me ready to stab me with an epipen) will pick up where those other pills left off… hopefully the right shared properties fall into the right shared portion of the Venn diagram.

You’ll be hearin’ from me.

 

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14 Responses to goonies never say die

  1. Sharon says:

    I admire your strength and I am in awe of you. I know myself and I could not be as strong as you are. Thanks for the insight, I am so proud of you. I love you with all my heart. Shash XOXO

    Like

  2. Hi Jen – Words feel so clumsy and I’m tempted to just delete my comment and go back to work… but I want to let you know that Jenny and I are following your posts and you aren’t alone. I’m astonished by your strength and glad that your blog allows me to keep up with your battle. Sending cosmic LOVE~~

    Liked by 1 person

  3. Rita Rios says:

    Jen, it’s amazing how strong you are. Praying for you always and love you always ❤️
    Rita

    Liked by 1 person

  4. Erik Schmollinger says:

    Thank you, Jen.

    Liked by 1 person

  5. lucy says:

    love your wonderful writing always! even in the toughest of moments and scariest of topics you wake me up and warm me up with your wonderful words, thank you and sending so much love and LOVE this radiology update!!! i mean i loved the whole totally vanished idea, but that would have been maybe just too quick/complete to work and i love this smaller step since it’s in the right direction xxx

    Liked by 1 person

  6. Hilary says:

    Love you○○○○♡♡♡♡♡○○○○○○

    Liked by 1 person

  7. ChaCha says:

    Thanks for update. Luv u

    Liked by 1 person

  8. sclazarus says:

    Jen when you die, whether at 50 or 100, the life you look back on will have been on your terms from the get go. You cannot say that about many people. I am damn glad you are living, not dying. Keep kicking ass and taking names. I love you. xoxo

    Liked by 1 person

  9. Bonnie says:

    Jen, your strength gives me strength as I breathe a sigh, not so sure what that sigh is, but I have a little less heaviness in the pit of my stomach…making plans and thinking of the future is a good thing..see you thursday at poker . love you to the moon and back xoxo

    Liked by 1 person

  10. Diana Smagler says:

    It’s a good thing that there are fun indoor activities…like playing music!! I look forward to some jamming on Cail Drive. Soon, I hope. This has sure been Many the miles, Jen. I’m always sending positive energy your way. See ya soon. Xo

    Liked by 1 person

  11. Chris Tharp says:

    Brilliantly written. Insightful and funny. Keep ’em coming Jen.

    Liked by 1 person

  12. John Bocskay says:

    You’re the shit, lady. Respect and love to you. And thank you for being a little piece of my life too.

    Liked by 1 person

  13. Joshua Johnson says:

    I’m pulling for you Jen. 🙂

    Liked by 1 person

  14. Sandi says:

    Am looking forward to meeting you in July. We’ll find a nice shady spot. Keep in keepin’ on.

    Liked by 1 person

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