Testing, testing, 1, 2, 3...


Cancer christmas yielded many things I didn't know I needed until I needed them.  Joey Kotfica worked with us at Coney Island High doing all the things I was too old, stupid or busy to do, like updating our website with the latest gigs and doing all the tech stuff.  She now lives in SF with her husband.  She mails me a care package with hand sanitizer (understand that), a knit cap (as mentioned in my last blog), hand lotion (can always use that), hundred of those granny peppermints (nice to have), a dozen pocket packs of Kleenex (this one I'm scratching my head over) and nail polish, because chemo BOREDOM!  At my first chemo they gave me a backpack, a blanket, and a "box of hope" made by volunteers.  I packed up all my little goodies and my laptop in every session.  I have not used everything, but I've got it if I need it.  


I'm ready for anything.  I ran/walked a 5K 10 weeks into a twelve-week cycle of Taxol.  I have not thrown up.  I threw the anti-nausea meds in the garbage because I read that medication is also used to treat Schizophrenia.  I'd rather throw up.  I have lots of treats from friends - ginger candy, peppermint tea, and those white and red peppermints everyone's grandmother has.  I also got some Rick Simpson Oil from Colorado which is supposed to cure cancer in addition to helping with the side effects.  This care package contained this homemade potion that you roll on the bottom of your feet.  I was skeptical at first, but it WORKS.  The Rick Simpson Oil also works - as in 1000mg of THC.  Apparently, some people do the entire cycle/treatment of Rick Simpson Oil in 30 days, which means you are so stoned you can't do anything else.  Nothing.  I took 1 ml before bed and woke up stoned.  SO, I'm not going to blast through this any time soon.  For a rock and roller, I make a pretty bad stoner.  I've never been very good at drugs because I can't stick with anything very long.  It requires commitment. 
After the St Patrick's Day Run, I decide need to get out more.  My job is ending soon and I'm not looking for another one until I'm through all of this.  Aside for the weekly IV for a few more weeks, I'm completely untethered.  I have a weekend and four days and nights before I feel like a sick person again.  It's like a furlough from prison.  I have the house in Florida, and have only stayed there once.  I can't BELIEVE my shit luck with being diagnosed less than three weeks after the closing on the house.  That IV is like a ball and chain.  I might was well make the most of it since I have to stay up north. 
I'm in the NYC area, so why not enjoy everything The City has to offer.  Culture, Concerts, Protests!  I meet friends in NYC for March for Our Lives and my friend Jessica gives me this badass skull scarf.  It makes me feel tough - like a pirate.  Death-defying cancer lady marching for gun violence.  That would be my luck - surviving cancer only to be shot to death.  Bigtwin and Kate crom from Delaware, and my nephew Erik joins us.  Monica who drags me to the runs is there with her daughter Hannah.  It's more like a party than a Protest.  I am proud of myself because I get the crowd going outside the Trump International Hotel, chanting, "Shit-hole! Shit-hole!".  I take video for Instagram.  It's easy to blend into the crowd.
I also have a Theater Development Fund membership for discounted show tickets.  I can't remember the last time I saw a Broadway show.  April and I got tickets for Kinky Boots which is pure musical song and dance fluff.  Fun and forgettable.  Just what the doctor ordered  it feels good to be in a theater - we are up in a box.  We can sit up there and gawk like the old men on The Muppet Show.  I don't have to make an appearance and can hide in the wings.  

I need the antidote to Broadway glitz and camp, so it's off to Brooklyn with my childhood neighbor Mariam to see Monster Magnet.  This may have been the first gig since my hair fell out, so I wear the fancy human-hair wig that could pass for my own.  That's not my intention, but you cannot go to a metal show bald unless you are Rob Halford.  Metal is all about the hair.  I can't get over this wig - it is too perfect.  I can't really headbang - it's not like it's glued to my head!  We get a hotel for the night and party like rock stars.  Mariam gives me some of her cool black leather accessories - a choker and a wristband with rhinestones and chainmail.  Perfect.

That wasn't so scary.  I have to admit, I was a little afraid to put my foot in the waters of the mosh pit as a cancer person.  I was not only feeling a little self-conscious, but I was more afraid of how people would react to me.  It's not the hair or the wig.  I'm not trying to "pass".  It's how people would treat me.  Kid gloves?  Pity?  Pretend I don't have cancer?  Blank me because they are uncomfortable and don't know what to say? 

I have had life events where friends surprised me - some by stepping up and some by disappearing.  My father died when I was in my late 20s and most people's fathers weren't dead.  Many of my peers did not know what to do or say.  People avoided me.  It was crazy.  Here's some advice folks:  If something happens to someone you know and you don't know what to say, the best thing to do is say, "Hey, I don't know what to say."  Perfectly okay and acceptable.  Blanking people who are having a hard time because you are uncomfortable is not acceptable.

The other situation was when something bad happened to me and people were so uncomfortable, that I had to tap dance to make THEM feel comfortable even though I could have died and looked like crap.  I had a car accident just before I turned 18 and half my head was shaved and half my face looked like hamburger meat, with hundreds of stitches in it.  I looked like walking road rash.  Roadkill.  People would stare.  I would catch them looking and they would turn away, pretending not to notice.  Kids were curious, and their parents would say, "It's not nice to stare!", and I would make a joke.  They would look shocked I could speak, as if I was Frankenstein.  Like being bald, I would forget when I looked like and just go out of the house, then remember my dog meat face when I saw people recoil in horror.  Sorry I look so bad that I have to make you feel better!  I'm alive!  I'm OK!  I'm fine!  It's only a flesh wound!  

Now, for the real test.  The Breeders are playing in Brooklyn.  These are my people.  I would have not missed The Breeders even if I had to bring that darn IV pole with me!  I meet my friend Debbie and I know other people who will be there.  Walking in with a emotional support human makes it easier.  But like the Monster Magnet show, once people saw me, smiling, festive wig, and saw how well I looked and how high my energy level was, all of that trepidation and dread of being treated differently melted away.  Whatever was going on inside was not evident on the outside.  I was afraid I was going to have to carry the conversation or perform parlor tricks to prove I was not on death's door.  The best part?  It's too loud to talk about cancer.  It's a rock show, so all I have to do is Devil horns and thumbs up and it's all rock 'roll.

I've tested the waters.  Wading is fine, but the hard part is getting in past your crotch.  Running was easy - I had nothing to prove except crossing the finish line.  Protesting was fine in a sea of millions where the focus is the cause.  Broadway is fine because you sit in the dark.  Re-entering to rock arena, quite literally, was the real test.  I feel okay, but am I really okay?  Are people okay with me as I am now or do they think i have changed?  Am I different than I was before?  What you can't see is different now.  I bought MANY gig tickets in the past and just didn't feel like going the night of the show.  Now I HAVE to go, like I HAVE to run the 5K.  I have to push myself.  I can't be sedentary.  I can't let cancer creep in.  I might never get out of bed ever again.  Once I stop, that's when it's over.  

And I finally figured out why Joey sent me lots pocket packs of Kleenex through the mail all the way from San Francisco.  I was back in the "Infusion Suite" for chemo and my nose started running uncontrollably.  It happens a lot these days.  I asked the nurse, "Hey, do you have Kleenex?  The weirdest thing keeps happening.  I don't have allergies or anything, but my nose will run and not stop.  All the time.  I have no idea why this is keeps happening."

The nurse looks at me incredulously.  She hands me the box of Kleenex, then quips, "You know why?  Your nose hair fell out!"

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