The Real Me

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You may see me, but let me be honest:  It doesn’t feel like the real me that you are with. I don’t know who the “real me” is anymore, quite frankly.  It feels like I have broken off into different pieces, most of them scattered and broken and lost.

“Don’t isolate,” people tell me, but I have lost interest in most things. I know that a deep depression lies within me and that when I smile and laugh it feels real, but the next moment all I want to do is cry and pull the covers over my head.

My liver numbers are being monitored really closely because I guess they have been too high (I’m still trying to understand all of this medical jargon), and it is within the last few months that I have realized all of these great cancer treatments bring about such mean side-effects. I am so grateful for the treatments but I am also resentful of the residue that they leave behind… A half-eaten rotten apple with brown spots.  I am rotten.  (With brown spots).

The liver radiation that put me in bed and on the couch for months has worked, at least for the time being, so we try to live in that space of hope and gratitude. My liver looks stable in terms of the melanoma, but unfortunately the melanoma has also traveled to my stomach.  Thank g-d it doesn’t seem to be life-threatening at this point.  They tried to open up some of my bile ducts that had closed with the liver radiation, putting 3 stents inside of me, and they told me that I should take some Tylenol after the procedure and that I would be OK within a couple of days.  But we all know how that goes; a week later I was still on pain meds.  Tylenol?  F you doc for suggesting that this isn’t a big deal!  3 stents put inside my poor, aching body.  I went to the ER last week, feeling worse and worse, and they admitted me for 2 days, finding that I was probably having spasms in one of the pancreatic ducts, which was causing a lot of pain.  (This after taking blood and doing a CT scan and hooking me up to all kinds of monitors and giving me antibiotics in case it was an infection).  I’m so tired of hospitals.  And colonoscopies.  And endoscopies.  And biopsies.  And all things that end in “ies.”

I find out that I need to have another stent put in to replace the two small ones already there. A bigger one.  I think about how my body feels right now; like a scarecrow in the middle of a field where ravens come by to pick at it.  Little by little my body feels less like my own, and more like it belongs to cancer.

I don’t want this to become my reality.  Or has it already?

I try to take care of myself. I get massages and rest/nap/sleep and I’d love to exercise but my body is so, so tired.  The self-care, including meditation, keeps me just above the water.  Sometimes I feel like I could drown, but somehow something always lifts me up again.  Is it g-d?  The universe?  My family and friends?  I am so grateful that you will not let me sink beneath the waters.

Then I get the news that I’ve been nominated by Conquer Magazine for the Hero of the Hope Award. The Cancer Hope Network and the Jimmy Fund nominated me, and I am one of four finalists.  I even get to go to their conference in Orlando in November where they announce the winner, and better than that, the person gets $1,000 to go to any charity that they like!  Voting is now open!  I am blown away by this nomination and I am not saying this to be humble—I really, honestly, don’t understand how I’m a hero.  Especially now, when I feel like all I do is complain about not feeling well.  What kind of a hero is that?

I go to work—everybody says that’s good for me, gets my mind off of my health, I can help other people, socialize with my co-workers, etc. But there is major change going on at work with layoffs, people resigning and retiring, and integrating two EAP’s that my company just bought.  We have a whole new system to learn with just a few days until we go live.  I try so hard to concentrate; there are so many new things to learn.  I get calls about people who feel suicidal or whose family members have just died from cancer or train conductors who couldn’t stop the train in time and somebody was killed on the tracks.  Everybody is stressed and I’m not sure that I should really be there.

If I could, I would take some time off and not let anybody do anything to my body for months (unless it was life threatening). I would travel and visit friends and pretend like none of this is happening.  I would go to farmers markets and museums and shop and enjoy nature and maybe go to the beach somewhere.  I would get back into my book and write and sip awesome lattes because I am obsessed with coffee these days.  I would eat ice cream sundaes and sleep and not set an alarm.  I would forget about cancer and all of the cruel side-effects and I would pretend, just for a little bit, that I’m me.  The real me.  Not the broken version, but the put-together version who loves life and all it has to offer.

Since April:  4 part liver radiation.  Kidney stones.  Surgery.  Blood taken.  Colonoscopy.  Endoscopy.  Biopsy of liver tissue.  3 stents placed into my bile ducts.  5 hospitalizations.  Restless leg syndrome.  Melanoma now in my stomach.  Liver stable.  Lots of missed work.  Tons of sleep.  Guilt over not giving SHL a more normal life.

The sadness sweeps through me with a huge sigh and I do my best to tread water.

In between writing this post I go for a walk around my neighborhood.  It is a gorgeous day here in New England; warm and sunny and there’s something so still about the air, like it’s praying.

I haven’t been able to walk in weeks, so this feels like a real feat.  It takes me 30 minutes to walk what would usually take about 20, but that is OK, I tell myself.  I still did it.

I long for Kris Carr’s savvy advice, menu plans, and soul inspiring blogs.  Gabby Bernstein’s videos.  Miracles.  Talking to the universe.  Moving my body.  Finding joy in the things that I once did.  But I don’t reach out to Kris or Gabby or anybody.  Too many pieces floating.  Too much wreckage.  Not enough energy.  The sorrow takes me and breaks me apart and though I promise myself it won’t always be like this, because hope lives inside of me and always will, I forget the real me for a while and wonder what kind of a hero would let herself get this far down the river without a life jacket.

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Looking for Peace (And Pastries)

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Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” — Alan Alda

I read.  I sleep.  I dream.  I live in a land where I used to be somebody else, but no more.

An old friend reaches out to tell me that’s OK; we’re always evolving.  Trying to stuff so much of my old baggage into the new suitcase is time consuming and “futile.”

Maybe she’s right.

Who am I now?  I do not know.  I suppose this is OK.  Your true self shows up when it is ready.  Perhaps mine is not ready.  Not yet.

A lot of us have trauma; too many.  Things that we’ve seen or experienced personally; dreams that attack us when we are awake, nightmares that try to crunch through our ear canals while we sleep.  If we let them, they can take away a lot.  Like our authenticity.  Our love of life.  Our humor.  If we let them.

My blood sugars remain high, though I am working with my endocrinologist on it, but still my head is fuzzy and when I’m asked to do something at work I pray that it’s something easy.  I know that I can’t handle much else, or at least without being made to feel like a fool (I’ve been here 6 years, some things by now should just come easily).

I’m careful when I drive.  I’m careful when I walk down the stairs.  The diabetes has once again thrown me off the edge of this cliff; the one where I stand with my toes curled underneath me, feeling the sand and the brush and the rough rocks just waiting for me below.

I try again and again to get out of here– to get some reprieve from work and the doctor’s appointments.  From the needle pricks and the blood and keeping count of pills (yesterday was 17) and numbers.  I do small things for myself here and there that are supposed to add to self-care like massages and lunch with friends.  I get enough sleep.  I snuggle with my kitties.  I went for a walk for the first time the other day in I don’t know how long.

It doesn’t work.  Not really. The writing and the sharing keeps me from becoming totally isolated, but life is boring.  Non-adventurous.  Just waiting for something to happen.  Something good.  I soaked myself in a meditation last night that reminded me that my beliefs navigate my world, not the way other way around.

Maybe I need to find the adventure, instead of waiting for it to find me.

I long to jump off of this medical merry-go-round that I seem to be stuck on.  It’s making me nauseous.

I have long, deep dreams about traveling.  Shaking off my day-to-day life responsibilities and going to the beach.  Don’t care if I need a sweatshirt.  Don’t really care where it is.  Just some sand, water, a blanket, and a book.

I long to put on my headphones and faze out the rest of the world.  I would jump on a plane and maybe go see the red rocks of Sedona.  Maybe squeeze myself into a crevice somewhere in a national park and watch the sun set without being afraid of seeing the dark.

Meditation reigns me in; it’s one of the few things these days that makes me feel still, like I’m not sliding right off the map.  But still, I search for far-away places:

Seattle and Vancouver could be lovely.  I could stay out with my friends who have neighborhood block parties and go sailing and we could get some good grub and pretend that none of this other stuff is happening, has happened.

I could go to Austin and swim in the rooftop pool at the South Congress hotel and finally drink a cocktail and find a good food truck covered with lights.  I could play w/ A’s kids in the driveway with chalk and soccer goals and forget about where I’m from, in that moment.

I could go down to Miami and help my friend M forget about the hurricane, the cleanup and the disaster that her city now is.  Instead we could go to the beach and rent bikes and eat Argentinian pastries on the boardwalk as the sun wakes up.  We could make green juices and go for walks.

I could go all over– to Europe to eat pastries and wander museums, to have afternoon tea with the Queen, to shop on the Champs Elyse, stopping at the Musee De l’Orangerie for my fix of Monet water lilies.  I could eat the best gelato in Florence and go visit my high school teacher in Arezzo.  I could go to Fiji and sit on my own private veranda and jump into that crystal clear water whenever I want to.  I could have somebody bring me drinks and pretend like I don’t have cancer.  Or stomach issues.  Or glaucoma.  Or diabetes.  Or massive fatigue.  Or overwhelming depression.

I want to dip my toes in 7 mile beach; my favorite, the Cayman Islands.  I want to float in that water forever, until the sun sets and you can’t see the little fishes swimming so carefully underneath you.

(So to recap:  Pastries and the beach are calling).

I want to feel carefree. I want to believe that it is possible to feel carefree again.

I want to chuck it all– just bring SHL and a backpack and pretend, just for a while, that I’m just a normal girl, living an adventurous life, one without regret, and one with much peace.

 

The World Spins Wildly On

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The water is so smooth as it travels from wave to sand, it covers my body like a kind of medicine that only I can see, feel, and attest to.  I linger in the blueness of mother nature and push my feet up as high as they will go, until I can see my bright blue sapphire toenails peeking up against the turquoise waves and my curly blonde hair surrounds me– turned back into a salty, wet, mess.  I love it, and  I long to stay here– right here– floating on my back, alone, watching the clouds turn into turtles and dragons and anything else that my mind wants them to be.  This is something that I can control.  It is as is nobody else exists, or more importantly, nothing else:  No doctor’s appointments.  No diagnoses or prognoses.  No scans or infusions, no phone calls or lab withdrawals.

My body hurts (mostly my stomach).  I put all my vacation eggs into one basket, counting down the days until SHL and I could ditch this popsicle stand and go rest our weary feet down in Bermuda.  10 days.  10 whole days to do nothing but swim and feel salty and play volleyball and kadima and golf and tennis and sleep and nap and eat and drink.

It wasn’t a total waste.  Despite the fact that I didn’t feel well, there were some times when I was able to make it to the beach or the pool, swimming, drinking cokes to settle my stomach and reading a good book.  I haven’t been a reader in a long time (I used to be a veracious reader and one summer in 2006 I read about 12 books, my claim to fame) but now with the deepest kinds of distractions I just can’t seem to get through a book anymore.  However on this vacation I finished a great one (My Grandmother Asked Me To Tell You She’s Sorry), cleaned up a 515 page total beach book called Truly, Madly, Guilty, and am now about half way done with Noah Hawley’s (FX Fargo series writer) NY Times bestseller Before the Fall.

For the first week of the vacation we weren’t even sure that we’d be able to stay.  I spoke to the on-call doctors and most agreed that my first infusion of Remicaide right before the vacation just wasn’t at a high enough dose to knock out any of this painful inflammation that has been plaguing me.  If things didn’t get any better, they said, I’d have to go to the local urgent care.  We don’t know if it’s the latest immunotherapy that is still wreaking havoc on my body, or what we found out after a recent endoscopy and colonoscopy, that the melanoma has now spread to my stomach.  Thank g-d the doctors don’t think that’s life threatening at the moment, but I’d still love to know how it got there.

Wouldn’t we all.

Ever since April I have been in some kind of pain– liver pain, stomach pain, massive fatigue, kidney stones, feelings of being full after I eat small portions.  It’s been downright nasty to see the world spinning on while I have to eat plain pasta and be stuck on the couch.  Positively unfair, one could say.

So Bermuda was supposed to be 10 days of romance, salt, sun and fun.  And though we did make the best out of it and we were able to stay the 10 days, it wasn’t exactly what we had in mind.  “Care-free” has not crossed our paths in a very long time, and I long for a life that I had remembered in those soft, colorful shapes that seemed to fill the cracks.

We used to go to Bermuda a lot on family vacations, so the pastel houses with white roofs and milk named after Dunkley and playing Rummy Q out on our balcony all brought back such sweet memories.  Now I was to make these memories for my husband, who had never been there.

There were many days when we didn’t get the full scope of sunshine, a day or two spent inside the hotel room looking at the ocean from the bed, and some days just dragging to figure out what to eat while everybody else was just positively dripping with ice cream.

Being home again, I can’t say that I really remember anymore what made me happy.  I know I am not my illness, (I am told this, but if I actually believe it is another thing entirely), but even as I begin to slowly start to feel better (as I wait for a biopsy of some liver tissue and get countless blood work and labs and infusions and scan results) I wonder:  Who am I?  What really makes me happy?  Will the same things that did a year ago now suffice?  I am scared that they may not.  I do not feel like the same person.  I do not remember what it feels like to be content.  I feel sluggish, discontent, lost, far away, and so, so tired.

Here is what I am grateful for, and it’s big:  The last liver scans shows stability.  My doctor says that he’ll take it, so will I then.  On Tuesday before getting my IV placed in for the biopsy my surgeon made sure to stop by to tell me that the had looked at the last scan as well and said that some things on the right side (which have had longer times to soak up the medicine) have even shrunk.  Thank you g-d!

So there is melanoma in the stomach.  There have been labs and more/other scans and biopsies and hours worth of infusions, but we cling to what we hear about the stability of the liver.  My #’s are rising which is why they need this tissue biopsy, and I can only hope and pray that things are OK.  That I am OK.  Because I don’t have much left in me to give right now.  I never did really recharge my batteries in Bermuda and now, I am on low once again.  My blood sugars super high from the steroids; the steroids saved my stomach but the high blood sugar makes me feel so foggy that I slammed into a curb the other day and gave myself one heck on a flat tire.

And I am scared, petrified really, that I may never be myself again.  Because I don’t even really remember who that girl was, let alone if I was to be her once more.

Dear readers– friends, family, social media family– please do not tell me that I will be myself again, and soon.  Please know, in that the deepest hours of the darkest thoughts, that nobody really knows what will be and for now, that will just have to be OK.