submerged

i was convinced that my next blog post was going to be so positive and upbeat.  i was going to talk about a whole set of firsts:

•  my first yoga class at the cancer support community:  a fellow participant who could have been my grandfather told me afterward, “great job!  you didn’t fall over!”  it’s true.  i didn’t.  success!

•  my first time back on the elliptical:  it went so smoothly, even my PT was impressed.  i apparently am gaining strength and function even within the context of this strange, three-steps-forward, one-step-back chemo dance i’ve been doing for some time now.

•  my first time seeing a therapist:  he works in the simms/mann center for integrative oncology at UCLA and has loads of experience helping young people who are coping with cancer…and life…at the same time.  it’s been great so far.  he hasn’t gotten a word in edgewise.  guess i have a lot on my mind.

•  my first time attending a support group:  it was for young adults and we all had very similar questions/problems/issues — work, finances, parents, friends, relationships.  how to handle all these oh-so-typical life matters while maintaining the seemingly full-time job of fighting cancer.  i left feeling uplifted and not quite so alone.

but then, before i could write that positive, upbeat blog post and be all positive and upbeat, chemo round numero ocho hit me smack upside the head.  it was not fun.  at all.

i think i might have jinxed myself.  a couple weeks ago, i was hanging out with my friend lauren, and i told her, “you know, chemo has been hard, really hard, but not unbearable.  in fact, i feel like, if things were to keep going the way they have been, i could do this for a long time.  indefinitely, if necessary.”  yeah.  i should have knocked on wood after that.

because this wasn’t any ol’ run-of-the-mill chemo round.  this was like chemo on steroids.  like chemo that’s been building up in my body for months on end.  like someone-must’ve-screwed-up-the-dosage-cause-this-just-don’t-feel-right chemo.

i keep telling people i wish i could describe the sensation better.  i’m good with words.  right?  i should be able to do this.  but the thing about using words to describe experiences is that the words are only as good as the common experiences they evoke.  no simile, no empathy.

so, i’ve tried comparisons like a hangover, perhaps.  or the flu.  but they don’t even come close.

this time, though, i think i might have found the right one.  this time, it was like being trapped underwater.  you know how it feels when you’re submerged and the sights and sounds from above the surface seem far away and otherworldly?  how at first it seems kind of ok and not that bothersome that your senses aren’t working the way they do on dry land?  how for a while you’re perfectly comfortable with the amount of air remaining in your lungs?  and then, when it does become bothersome and you’re not comfortable anymore, you simply pop to the surface, take a big gulp of air and become reacquainted with the feeling of the sun and the breeze on your face and the sounds of kids playing and the seagulls flying overhead?

but, this time, i felt trapped under there.  like all i wanted to do was come up for air, do a sensory check-in with the real world, and then i could go under again, if necessary.  but i couldn’t come up.  i was under too deep.  i couldn’t keep my eyes open; i couldn’t make sense of simple questions; i couldn’t read because the words just swam together on the page; i couldn’t sit outside because the sun was too bright; i couldn’t eat because the nausea was too bad.

so i was trapped, alone, in my head, with my muddled, frightened, incoherent thoughts.  and, finally, just about when i thought it was never going to end, it did.  and i got to take that gulp of air.  and the world stopped undulating.  and the nausea died down.  and i went to hear some live music through eardrums that had stopped being so hypersensitive.

and now, i feel less trapped and more alive.

but, somehow, in three weeks, i’ve got to figure out how to do it again, when, for the first time, this time, i thought, “i can’t.”

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5 thoughts on “submerged

  1. “Friend, you are a divine mingle-mangle of guts and stardust.” I LOVE YOU and hope that I can sit next to you for the next deep dive and just keep you company.

  2. thank you for sharing this. so beautifully written. watching you from afar and thinking of you often.

    a complete stranger,
    melissa coan
    (patrick neiler’s gf)

  3. So I just read this today (Sun 3 July) and was amazed by how closely it paralleled a conversation I had with a chemo patient a couple of days ago. A late-round intensifying of effects, and a discussion of the underwater-ness of the whole experience. The change in the body’s reaction and the mind’s experience as the drug builds up catches a lot of people off guard (and nobody warns patients that this happens) (but will say after the fact “Oh yeah, that happens”). Oh yeah, that happens.

  4. Hi. My name is amie. I live in culver city and was diagnosed with brain cancer last year. Just came across your website and thought I’d say hi. Hi!

    🙂

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