on pins and needles…

i’ve been dark on the blog for awhile. mostly because of quality time spent with visiting friends, san francisco friends, and family. but there’s still so much i’m processing and want to share with you. because i find that sharing is helpful to process, and processing is helpful to share.

i started having significant neuropathy, or pins and needles and numbness, from my knees down and in my left hand. it’s a nervous system thing and is generally uncomfortable and not fully treatable; if it gets really bad, it can affect my ability to walk, or write, or know the difference between hot and cold. it can also linger after treatments are over and stay with me permanently. there are very few side effects from chemo that don’t have a pill to help manage them – neuropathy and fatigue remain 2 of the trickier ones. i’m on vitamin b6 and glutamine powder each day as something that can possibly help, according to my oncologist but not authorized by the FDA. keeping walgreens in business, i start yet another drug that might help (you get the emphasis here because frankly it all seems like a crap shoot some days). it’s an anti-seizure med. so at least we can keep the seizures at bay, right? that was a joke. of course the neuropathy started 48 hours after my nurse practitioner said, “if you were going to have neuropathy, it would have started by now.” so please no one say something that i won’t have because i will end up having it, or at least that’s how i feel.

the same thing with hot flashes. most in my treatment team wagered i wouldn’t enter menopause. well, welcome to it. i’m just hopeful it’s only temporary. not that i miss all the perks of being a non-menopausal thirty-something, but there’s a longing for my old self.

it’s a really big week at work, perhaps the biggest our team has all year. we convene grantee organizations for an annual retreat to learn, share, and celebrate. 70+ of the best and brightest ocean advocates in north america fly in and work, laugh, learn, ask tough questions, steal golfcarts, skinny dip, and drink too much wine together. sometimes not all in that order. i will get a lot of positive healing energy from being around everyone.

i also know myself well enough to know all that energy will leave me exhausted. i don’t want to talk much about what’s going on and how i’m doing, but i want to be open to people’s concern, warmth, and support. more broadly, i’m struggling with understanding my new limits. i go and go and go and then it hits me like a ton of bricks. exhaustion. jumbling words. not making sense in my thoughts. and a sharp pain in my temple. that’s when i know i went too far, was too social, too active, too normal, or trying to be.

so i might have to excuse myself to recharge earlier than normal or even in the middle of the day. and when i get asked how i’m doing, the authentic answer i’m practicing is that: “i’m thankful to be here, it’s going to be a long few years, i don’t yet have light at the end of the tunnel, and i go day by day. today is a __ (fill in blank) day. but tell me about you.” and then request and receive a hug. i can never have too many of those.

some other things i keep forgetting to close the loop on with you: i’m fully BRCA negative, after a long go-round with the insurance company, so i’m thankful to not have to make those tough decisions; the biopsy of my leg came back inconclusive, but the rash is largely gone and now i just need to get the stitches out; the other acne and hormonal/chemo rashes are mostly gone too, so i don’t look like a 15-year old; whiz digested the muffin wrapper on his own and survived the ordeal just fine, as he’s running around the house now with his favorite new monkey toy from jason and alysn; my hair keeps falling out and we haven’t had the time to shave my head completely yet, but getting mistaken for a boy–while waiting in line for the women’s restroom–might have either prolonged the shaving or sped it up…one can’t be sure yet; my port sutures are almost gone but the port feels like an alien growing out of my chest; and while my weekly bloodwork shows white blood cell counts as relatively normal, my red blood cell counts and some other coagulators have taken a nose dive, so cutting my finger with a bread knife means 1.5 hours of bleeding…while wearing all white and going to a fabulous all white attire dinner outside in SF on friday night with some fabulous dinner mates and 2995 other fabulous compatriots…talk about the worst time EVER to be bleeding left and right.

that’s all for now. i’ll leave you with a picture of walkers from this weekend’s making strides to end breast cancer walk – the gerhardt ladies in springfield. i also posted to the gallery our san francisco crew with visiting clevelanders. 5 miles felt good for everyone. i continuously appreciate all that you do–whether it’s meeting up for a walk, fundraising in my honor, sending me a card, or a shooting prayer up to your god of choice. while i can’t seem to keep on top of thanking each and every one of you and being super in touch, i feel all of your love, and i hope you feel mine coming back to you.

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