Looking for Peace (And Pastries)

2

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.

 

Advertisements

The World Spins Wildly On

1

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.

 

 

The Days Long Before Cancer

4

I’m so antsy, only this time (thank g-d) it’s not restless leg syndrome.  It’s the “I’ve got to get out of the house and try new things” kind of syndrome.

The last two weekends we have finally gotten a change of scenery from just sitting at home and staring at each other (not that I don’t love SHL’s face).  We went to the Cape one weekend and sat out on the deck having breakfast overlooking the ocean, sat outside reading, went out to a  movie and to eat, and had friends enjoy the beach with us.  This past weekend we went to a BBQ and beer fest (I was more into the BBQ and SHL was more into the beer) and then the Red Sox/Yankees game (we love Fenway!).

So it’s been more exciting than the past 3 months, that’s for sure, but at the same time, I feel like crawling out of my skin.  Perhaps it’s the work week that gets in the way of my mojo (can you relate?) as just as I feel like I’m relaxed, it’s time to go back to work.  Perhaps it’s just three months’ worth of bottled up angst at wanting to get out and do things, and now it seems like I just can’t get enough of fun and I wish good food (battling constant stomach aches and nausea). I long for adventure, and interestingly enough, I just wrote an article for our work blog where I quote an author who talks about getting out of a mental rut.  He was tired, overworked and overstressed, and people kept telling him to just rest and “take a break.”  But that didn’t feel institutively right to him, so you know what he did instead?  Stand-up comedy!  He said that breaking out of his comfort zone in the end really helped him mentally.

I can see that.  When A and I went to Mexico in February to celebrate my 40th birthday we went swimming in a cave and though it seems easy/peasy, crawling down that ladder while scared of heights was definitely out of my comfort zone.  Not only that, but swimming in a cave in a wet suit with bats flying all around and feeling somewhat claustrophobic and stalactites jutting around each corner felt adventurous!  I definitely felt more alive afterwards and remember celebrating with tacos and beer by the side of a dusty Mexican road.  Ahhh, adventure!

Any suggestions?  Should I have a spontaneous backyard party with a slip-n-slide, s’mores over a fire pit (that I yet to own) and a game of capture the flag?  Should I jump on a plane and go visit a friend?  Should I try a new food, go zip lining (so scared of that)… Should I get in the car and just drive somewhere?  I’m longing for the water, fresh air, sea salt and good, fresh, homemade ice cream.  I’m longing for overnight camp where we’d go to the general store and spend $2 on junk food that we’d eat late at night on each other’s beds.  I’m longing for carefree fun.

I’m longing to feel young and healthy and free again.  And in the end, what I’m really longing for are the days long before cancer, when I could believe that I was invincible.

 

Cry, Rinse, Repeat

4

My legs feel like they have tiny little creatures living underneath their skin just biding their time until they can make an escape.  I’ve never had Restless Leg Syndrome (RLS) so badly before, but my “team” seems to think that some of the current medications that I’m on are causing this.  I have tons of side effects to the cancer treatment; the treatment no matter what is almost virtually never just the whole story.  I am a whole, long, complicated, messy story.  I show up, but it ain’t pretty.

Me messy and complicated

Everybody keeps asking me how I am; doctors, therapists, family, friends.  The truth– or so I think– is that despite everything that has happened these last 4 months (immunotherapy, being told it may not be working, having 5 surgeries in 2 months which includes a kidney stone on top of it all), my mind feels “OK.”  I don’t think of myself as being depressed, though I know I’m a bit anxious, who would’t be?  I still long to get back to the life I had before all of this nonsense; when being tired was a daily struggle but I could still see friends and do my laundry and write.  That all feels so long ago.

If I was writing chapters, this one would be

Chapter 4: Cry, Rinse, Repeat.  And here is what it would say:

It is possible to think that you are OK, but really not be.  I don’t say this to scare you, more to give you a “heads up” let’s call it.  Don’t be surprised if one day you’re in the car w/ your ____,  or at home in your bed, or having a fight w/ ______, or at work talking about _____.  It doesn’t really matter where you are, and frankly, it doesn’t really matter who you’re with.  Because when it happens, it hurts like hell.

I really did think I was OK.  I thought, “Hey, maybe I should be more depressed?”  After the 7th doctor asks you about your state of mine you begin to wonder:  Well, am I “blue?” Obviously I’m not signing in the rain, but I’ve just been trying to take things one day at a time, meditate, and lean on SHL and my family, and that has all really been helping.

It wasn’t until yesterday that I cried and then, I couldn’t stop.  Repeat.  Repeat.  Repeat.

It really started not because of pain from the last surgery, but because of side effects. Who at this point knows what’s in my body, and my restless legs have become impossibly restless.  The last 4 nights I haven’t slept well; taking hours to fall asleep and then waking up throughout the night.  Choppy sleeping s what I call it and it sucks.  My legs feel the need to move and I’m tired on top of it all.  Go take a walk or do some yoga the websites say.  F&*^ that!  Are you kidding me?  I’m delirious.

My stomach feels tight, so tight, regardless of what I eat.  I miss eating with enjoyment.  It feels like I’ve stubbed my toe something awful but I’m at the point where the pain is just now registering in my brain.  How bad is it gonna be?

One of my 17 doctors on the case finally gives ms something for the RLS (Is there something for I’m about to have a nervous breakdown?!), but I’m still foggy and feel like I can’t concentrate or put my heart into anything except love, which I guess in this case is pretty good, actually.  I’m still in the crying state, and not really because of the pain of the last surgery, which was 11 days ago. That’s there, in a subtle way, like some mud in a whole pile of shit.  I’ve weaned off of the pain meds so maybe I’m having some withdrawal side effects, but regardless, as David says in Friends episode of a very, very tiny diamond ring, “And uhm, the clarity is quite poor.”  He’s talking about a ring, but I could say the same of my life.

Broken

0

I didn’t cry the first month.

There wasn’t really anything to cry about; or perhaps there was, but it was all just masked by bewilderment and anger.

I knew that I was doing the liver radioembolization for a damn good reason.  Some doctors thought that my immunotherapy wasn’t working, and that the tumors in my liver were getting bigger.

This could potentially stop that.

So I switched my care from Dana-Farber to MGH, who offered me this new treatment, and I was immediately so impressed with my new oncologist and surgeon.

My old oncologist promised me that I could never “lose him,” that I was just adding new people to the team now.  One of the nicest things that he could have ever said to me.

My team grows, and hopefully the cancer does not.

You don’t think about the relationships when you think about cancer, right?  Mostly you probably just think about the treatments and medicines, but the relationships with the doctors, nurses, infusion nurses, physician assistants, medical assistants and admin staff have all been such a huge part of my life for the last almost 4 years.

“You may not feel well for a while,” the surgeon warned me.  “Perhaps some nausea, gastrointestinal issues, and you may feel like you have the flu, headache, and very tired,” he went on to explain.

But all treatments, immunotherapies or surgeries or what have you, have side-effects, and you have to outweigh the good with the bad.  If this could potentially stop the tumors from growing, than it seemed logical to try it.

“I can get through it,” I thought to myself.

For the next four weeks I very often forgot that I was in pain because of cancer.  I just plain forgot that the whole crux of the issue was the cancer.  Maybe that sounds silly, forgetting the biggest thing that has ever happened to me, what is growing inside of my body, what I’m doing this all for.

But all I could focus on was how crappy I felt.  And how isolated, lonely, and scared my days were (even though SHL and my parents have taken outstanding care of me).  The doctors said that people could take weeks to heal, but they did find it was very rare that it would go on for this long (I am not being a “debbie downer” but my family will tell you that if they say, for example, 1% won’t feel well for an extended period of time, I will be in that 1%).

My best friend A came from Texas.  I had planned a Greek lunch with my Mom, an Asian dinner on the seaport for Saturday night, a hike and juice or smoothie during the day, a brunch with local friends, and then going to the MFA to see the Matisse exhibit.

We had lunch with my Mom, and that was about it.  Poor thing came all the way from Texas– I know to see me– but just saw the inside of my house all weekend.  Because at that point I had a kidney stone that was just rearing its ugly head and wanted out, on top of the liver being inflamed.  (A took such good care of me, making me grilled sandwiches and rubbing my back and we watched mountains of cooking shows together.  She’s been through so much with me!).

Before that, about 5 days after the liver procedure, I was supposed to have an ultrasound to figure out why I still didn’t feel well, but when we got to the doctor’s office they took one look at me and put me on a stretcher and wheeled me down to the ER.  My Mom was with me and we stayed there for about 24 hours while they did tests and waited for a room for me.  Finally I was moved to a room where I stayed for another day and night and then was sent home.

So after A came to visit I went back into the hospital to have the kidney stone removed, about 17 days since the first liver radiation.

Two days later I had such excruciatingly bad stomach pains that my Mom rushed me back to the ER, where I was admitted for what I call “after-shocks” from having kidney stones.  More pain meds.

Home.  Home is where the heart is, until you’re home for 35 days, and then all you want is to be anywhere but home.  Mexico, perhaps?  Heck I would take Natick.

The last few days my Mom has been getting me out of the house; I’m still on pain meds but so not really able to do much without her, but we’ve managed to have lunch out and do some errands to get ready for our mini-golf fundraiser coming up on June 3rd!

(Shameless plug to donate here; all money goes directly to the Melanoma Center at Dana-Farber where they are working tirelessly to find more treatments and of course eventually, a cure): http://www.myjimmyfundevent.org/faf/donorReg/donorPledge.asp?ievent=1166643&supid=444457597.  Click on “Give Now.”  We are so appreciative of the kindness of Team Lozier and Beyond!

What do I miss, many ask?  I miss my friends, so much.  I haven’t felt well to have visitors or try and even keep up with conversations; when you’re in so much pain, on pain meds, loopy, tired and depressed even though you miss others, sometimes you just feel it would be too much.  I miss Tulum and those amazing coffee smoothies that no matter how hard I try to make at home come out sub-par.  I miss those hard, intense yoga classes overlooking the ocean with the little shooters of green juice afterwards.  I miss having slumber parties with A at night talking about the Grammy’s and our married lives and cancer and all that other “stuff” that best friends talk about.

I miss my twin M who was here from Florida for some of the last good times that I had before this pain.  My 40th surprise birthday, eating cake for breakfast, strolls down Newbury Street and dinner in the North End.

I miss going to work and helping people, feeling accomplished, feeling productive, schmoozing with my co-workers.

I miss days without pain, days without doctors calls and scheduling appointments (4 more to go before they do the next side of my liver in a few weeks).

It all seems so simple, doesn’t it?  Those every day things that we all too often take for granted.

It used to seem simple.

No, I didn’t cry that first month.  Now I cry almost every single day, waiting for the time when I can tell you that I have a pain-free day.

Please, please just read these words and know that I feel broken.  Please, I beg of you, do not tell me that it will get better, that I can’t feel like this forever.  I know you just want to help, but those words seem weightless right now.   I know it’s so hard to know what to say.

I love you.

But…

I wonder:  What if I really am broken?  What if they broke me?  I long to see the gold; to know it is there.  To know that broken does not mean in pain forever.

Broken objects.jpg

A New Story

2

I deserve a new story.  We all do.

Today, I will break up with my story.  Will you break up with yours?

I will say to my story, “Thank you story.  Thank you for making me who I am now, in this present moment.  I now release you out into the universe as I ask for a different, healthier path to follow.”

OK Universe, I get it.  Clearly you’re trying to tell me something.

I’m listening.

I recently wrote about my story as a cancer patient and revealed just how alone I feel.  Wrapped up, unraveling, little bits of hope and pain and fear all trying to crowd the same space.  But then I heard this quote by the wise Maya Angelou, and it goes like this: “Hope and fear cannot occupy the same space at the same time.  Invite one to stay.”

G-d?  Is that you?

I wrote that last piece for the blog quickly, the words just gushing out of me like a river that was afraid it was be swallowed whole by the ocean if it didn’t move briskly  enough.

Then that night I remembered that my free 21-day Deepak Chopra meditation started.  I logged on.  The topic?  Hope in Uncertain Times.  Touche Deepak, touché.

I click on my spirit junkie app.  That day’s affirmation?  “I will step back and let the Universe lead me today.”

I log onto my email.  A video from Gabby Bernstein.  The message?  “You deserve a new story.”

I sit back on the couch with my legs curled underneath me, resting my head on the pillows and pulling a blanket over me even though the room isn’t cold.  I want to feel secure, wrapped up in something other than deep and incessant fear.  I close my eyes and think.

This is what I have been putting out into the universe:

Sadness.  Fear.  Anger.  Jealousy.  Bitterness.  Lethargy.

Pain.

The universe responded in kind, and this is what I heard:

Stop telling yourself the same story over and over again.  You’re not just a cancer patient.  You’re not a victim.  You’re not powerless or hopeless or helpless.  It’s OK to feel that way sometimes, but remember:  Just because you feel it, doesn’t make it true.

Re-write a new story with the help of the universe.

I create one in my mind.  It goes something like this:

Dear Universe:

I’m ready to let this go.  Thank you for giving me a wake-up call 3+ years ago that I can’t hit the snooze button on life anymore.  I know I was a walking zombie there for a while.  There has always been potential inside of me to love a bit deeper, help a bit more, find greater fun and meaning and authenticity in the every day, but it slept still as the night, only awakened by the C word.  The D word.  The oh-fuck-I-better-live-my-life-like-I-mean-it-word.

I’m ready for my new story, and I hope it goes something like this:

New Cancer Protocol.  Life.  Family.  Friends.  Prayers. Fun.  Work.  Passion.  Advocacy.  Healing. More fun.  Glitter.  Unicorns.  Sunshine.  Feathers. Bravery. Iced coffee.  High vibes. Long walks. Magic.  The beach. Self-compassion (I’m talking about loving myself as much as I love all of you).  Bagels. Massages.  Puppy.  Miracles. Opportunities.  Gratitude confetti.  Travel.  Stillness.  Peace.  Love. Meditation.  Repeat.

Thank you Universe.

“I will step back and let the universe lead me today.”

And the living with hope in uncertain times?  I am reminded– I hear you g-d, loud and clear–of a blog piece that I wrote years and years ago, that I now know, as certain as anything, will be my very first chapter.

Remember how I wrote Chapter 2 which started to outline my story?  The one with the infertility and eye cancer and miscarriage and shoulder surgery and cancer again?  I knew that I wanted Chapter 1 to be about hope.

The piece that I had already written?  It was called With Hope Comes Life.

The phone rings.  My best friend A is coming to visit from Austin at the end of the month.

I hear you g-d, I hear you universe, and I thank you.

Feathers

 

It Can Be, It Will Be, It Should Be

0

Where is the most embarrassing place that you’ve ever cried?  The grocery store? Work?  How about while getting a… facial?  (A massage I can kind of understand, but a facial??).

I had just spent the past 2 days in bed flat on my back, with my knees under a pillow, a heating pad nearby, and a bottle of Tylenol next to me on the night table.  All because I had bent down the wrong way to put a glass of water on the coffee table. I already hadn’t been feeling well (fatigue from treatment, diabetes, etc.) and now this; I felt like I wanted to cry, but nothing was coming out except anger, fatigue, and boredom.

After those 2 days of taking warm showers, stretching, and lying in bed, I finally felt better.  A friend and I had plans to get facials and I was desperate to leave the house (and see her).

Usually when people ask me how I am I automatically say, “Good, how are you?”  I bet most of us do this, because really, are you going to let the pharmacist at CVS know that you’re miserable and awaiting a liver-targeted therapy and you feel depressed and anxious and if it rains one more day you may lose it?  Hopefully not.

My aesthetician at my favorite spa took me down the long dimly lit hallway and I already felt more relaxed.  I love getting facials and I don’t let whoever gets stuck working on my face get away with too much chatter about what face products I should be using.  Every few months my skin needs a little clean up and I like to do it in the most relaxing way possible.

But as she was massaging a mask into my face I began to feel a sense of being more in my body than I had been in days, perhaps weeks.  I felt myself relax into the warm bed as she massaged my feet and then draped a warm towel over my legs.  I imagined that all of my thoughts– so many I thought I would go crazy– were like clouds, definitely there in the sky (I AM THE SKY, thank you Geralyn Lucas) but able to drift away and leave just me, bare but alive and beautiful and not weighed down by weather.  So much weather.

My eyes were covered with cotton balls soaked in some kind of rose-scented something, a beautiful fragrance that trickled down from my eyes to my nose to my lips to the rest of my body, and my face felt cool and a little tingly underneath another cream.

All of a sudden I felt, clear as day, that I was in my body, in the present moment and yet so scared of what the next few weeks would bring (that doesn’t make sense, but what does these days?), so grateful to be able to care for myself in this way, so terrified and so unbalanced and so thankful and so happy and so sad and so distraught that my feelings were so out of control.

The rose-scented cotton balls became wet with my tears, and I knew that if I wasn’t on this table getting a facial, if I was home or in my car or even at work (and could close the door), I knew that I would sob until there was nothing left inside of me to pour out.

And although I didn’t want to let myself completely go, I simply couldn’t stop some of the tears that escaped and ran down my cheeks into the skin mask that she had so gently applied.  “Are you OK?” she whispered, and for a full 5 seconds (though it felt like much, much longer) I couldn’t say anything at all.  When I finally could speak I somehow managed to say “It feels so good to take care of my body, to feel warm and relaxed and to feel in my body.  I have cancer.”

“You’re going to be alright,” she murmured back, and I wondered how she knew that and then immediately understood that she had no idea whether or not I was going to be OK, but it was just something to say.

“Promise me that you’ll do this a lot more,” she said.  “It’s very important for you to feel like you’re taking care of yourself and feel relaxed amidst all of this stress.”

She was right.  I at once felt so shallow for feeling so good during a facial, and relieved that I have the time and resources to be able to get a massage or a facial or do something kind for my body when I need to.  I hadn’t realized how out-of-my-body I had felt these last few weeks, after my last treatment 2 + weeks ago and awaiting this new targeted-liver therapy.  Between the weather and not feeling well and doctor’s appointments I haven’t been exercising much, sick from low or too high blood sugar, in pain from the shot in my left eye, not sleeping well, and just generally feeling run-down.

I had mentioned to my brother how vain it felt– and dumb considering I have much bigger fish to fry– how insecure I had been feeling, looking tired and puffy and not feeling like myself.  Thankfully he totally validated my concerns and reminded me that I’m human.  Despite having much bigger problems, nobody wants to look in the mirror and not feel good/like themselves.  Thank you bro!

I also hadn’t realized how alone I had been feeling.  The truth is, your life and my life are so different.  And alike, in a lot of ways, but also so unalike.  And that’s the truth, so please don’t try and start writing out a list about how we’re really the same and cancer is just a little thing that makes our lives feel uncommon.  My life feels like being stuck at a fork in the road while others lives seem to be going right or left, with choices and paths that sometimes feel much longer than mine.  That’s just the truth.

And so, I let myself cry, and in the end I feel so much lighter.  The fear still exists; my self-help gurus help me with their books and meditations but honestly, the fear is still there.  And I know that it can be, that it will be, that it should be.

I am different.  I am not you, I do not have your life, I do not have your choices, and you do not have mine.  My road could be shorter than yours, we do not know.  But by acknowledging this unfamiliar terrain for all of us, in the end, you are acknowledging me.

30 Things I Learned in My 30’s

2

On my the eve of my 40th birthday, as I leave the 30’s and enter into a new decade, I share with you the 30 things that I learned over the last 10 years:

  1. There are way more than 30 things that I’ve learned in this decade.
  2. I believe in miracles.
  3. Get a second opinion.  ALWAYS get a second medical opinion.
  4. When in doubt, sleep on it.
  5. Practice compassion towards yourself and others–everybody is doing the best they can with the tools they have.
  6. Meditation can save your life.
  7. If meditation doesn’t save your life, find something else– anything else– that grounds you and helps you cope with life’s ups and downs.
  8. Find what sets your heart on fire and do it.  For me, that’s traveling and I want to have adventures all over the world with SHL.
  9. Do what you want to do, when you want to do it, as long as you’re not selfish or hurting anybody else.  Life is filled with responsibility and crap; the rest of the time, enjoy yourself.
  10. Surround yourself with people who are not just like-minded in how they treat you and others, but who have positive energy/vibes.  Life is too short to get caught up in bullshit.  Leave that in middle/high school.
  11. When you feel like life throws you a curve ball and you’re in the trenches, do something nice for somebody else.
  12. Clean up your side of the street (as Gabby Bernstein says).  It’s the only side you actually have any control over.
  13. Have an open mind.  If I didn’t, I never would have met my husband through Facebook.  After all, he lived in Canada!  Where did I think that relationship could go?  Turned out, this random guy from Facebook is my soul-mate.
  14. Be authentic.  You don’t have to write a blog or post your every feeling on Facebook, but just be yourself in whatever way feels good to you.  It’s way too much energy and effort not to be.  And for what?  This is the only life we’ve got, we mine as well make it our own.
  15. The deeper you go with the people you feel safe enough to be vulnerable with, the greater the love and support that you will feel in your own life.  Guaranteed (if you open yourself up to the people who “get it” and “get” you).
  16. Nobody’s life is perfect, even though it may look like it.
  17. Find others who you can look up to; I have learned so much about love, self-compassion, healing, forgiveness and being in the present moment from Kris, Gabby, Lolly Galvin, Ella Woodward, Brenee Brown, Glennon Doyle Melton, Geralyn Lucas, Matthew Zachary, and many others who are constantly striving to live their best lives possible while helping others.  We don’t know it all; admit that you don’t and learn from others.
  18. If you have a miscarriage, even before hearing a heartbeat, you’ll never stop loving that baby that could have been, and wondering who they could have grown up to be.
  19. Show up for anyone and everyone who means something to you.  Whatever that looks like, just show up, in any way.
  20. Say you’re sorry.  Oh man, I know this is hard, but it can be so freeing, so humbling, and it can even take your closest relationships to a whole new level.
  21. Give second chances.  Boy am I glad that I have and that others have done so for me too.
  22. When life hands you lemons and you don’t know what else the f*ck to do, follow these steps:  1) Take out some small candy bars of your choice 2) Put them into a zip lock bag 3) Put the zip lock bag on a sturdy cutting board, 4) Proceed to smash candy with a rolling pin or a cooking pan.  5) If your tears don’t taint it, turn that smashed candy into the best g-d damn ice cream cake your friends have ever tasted.
  23. Cry, when it comes naturally.  Let it flow.  Let it heal and ground you.  Don’t ever force it back inside; it will only come out in other, unhealthy ways.  As painful as suffering is, suffer.  Face it.  It allows you to be more in the present moment.
  24. Have gratitude for everything– I mean the big stuff (your family, spouse, kids, health, money to take care of your basic needs and then some, home, friends, job, whatever) to the “little” stuff (warm shower, running water, birds singing, a dog’s smile, crocuses blooming, a funny movie, a beautiful meal, coffee with a good friend, a warm embrace, a note from a loved one, a cat-like peaceful nap, a great piece of chocolate).  Then remember:  There really is no such thing as a “little” thing after all.
  25. Let the gratitude rise to the surface in an organic way.  It’s nice to keep gratitude lists and have a daily practice (I do), but there will be some days when life hands you a big bag of shit and you don’t want to say “thank you.”  That’s OK.  Be true to your soul.  Say thank you when you mean it.  That’s the best kind of gratitude, the authentic kind.  The kind when you’re eating lunch with your best friend and you realize how freakin’ lucky you are that tears just melt down your face.  That’s gratitude.
  26. If there is something that you want, go after it.  Our only limitations are in our own minds.
  27. Take your own advice.
  28. If you only read one “self-help” book, let it be something by Thich Nhat Hanh.
  29. There is no map.  Really.  We may think we are destined for one thing, but if a door closes, promise yourself that you will still live a great life, despite what you think you don’t have. You create your own journey, nobody else can tell us what great is.
  30. Love.  Love deeply, gently, authentically, without expectations, passionately, and with abandon.

31) Bonus:  Feel the fear and do it anyway.

Extra bonus: If you ever need to spend the night in the hospital, bring your own toothbrush. For the love of g-d, BYOE (bring your own everything!).

Love,

Sam xoxo

My Thanksgiving Gratitude List

1

These days we hear the word “gratitude” thrown around so much that I can only hope it is not one of those “buzz” words that we have started to tune out.  And hopefully it’s not just at Thanksgiving time that we actually take a moment to step out of our busy lives and look around at the good.  Did you know that there are now lots of studies out that showcase how keeping a gratitude journal (or just mentally stockpiling as you go) can actually be beneficial to your overall health?

I love Thanksgiving.  Anybody who knows me well knows that it is my favorite holiday Though I am a big lover of giving gifts, it is a nice time of year when no gifts are actually required; it’s simply about being together, having fun, eating comforting foods that we’ve been eating on this day for years (our traditions are rich just like I bet yours are) playing games, and cuddling up with a good movie.  There’s also some mandel bread lying around which reminds me of my Grandma Jeanette (who always had some in her freezer in case somebody was nice to her at the hair salon, the bank or the dentist).  Nobody will play $100,000 Pyramid with me any more (rightly so).  And on any given Thanksgiving you can usually find a few people upstairs in the loft watching football, a few people downstairs on the couch napping, smells of stuffing and pineapple souffle (yes, pineapple souffle wafting through the house (it is a family favorite and sooo good) , maybe a game of mah jongg or backgammon or Balderdash going on in the corner, and maybe (just maybe) the women are getting a little rowdy while checking on the turkey and giggling like not one day has gone by since we were all in the kitchen together checking on the food.  Snacks are out, apple cider is out, maybe some deer wander through the backyard.  This year our surroundings will be different this year (we’ll be in Florida instead of West Virginia or Virginia), I know that good memories are to come, and I can’t wait for the sunshine, warmth, and palm trees to help us create these new memories.  As long as I’m with those that I love, I could be in Timbuktu and be OK (though I’d prefer Florida).

Though I think about my blessings every day, silently to myself or in a journal, this year I wanted to just share a few with you before the holiday.  So here goes:

I’m grateful that even though I’m treatment, I can travel to be with my loved ones this Thanksgiving.

I’m grateful that my relatives and I love each other.

I’m grateful that my relatives and I like each other.

I’m grateful that I can eat my favorite foods on this holiday.

I’m grateful that my treatment doesn’t fall during Thanksgiving week.

I’m grateful for warm showers, meditation, gratitude confetti, green juice, blueberry smoothies with bee pollen, and warm cozy sweaters.

I’m grateful that each member of my family plays an integral part of my team from research to hand-holding to calmness to making me laugh to sending me feather tattoos.

I’m grateful that my friends forgive me for not calling, emailing or texting more.

I’m grateful that even though yesterday I was so tired I cried, I was still able to go out for a walk and enjoy nature.

I’m grateful for autumn in New England.

I’m grateful that my co-workers (and my boss) seem to miss me and send me nice notes telling me so.

I’m grateful that my nephew loves to cuddle, lets me call him Pop-tart (and hopefully will until he goes away to college), and keeps me laughing.

I’m grateful that my best friend’s kids want to FaceTime with their Sam Auntie so that I can tell them just how much I love them.

I’m grateful that my best friend A has the wisdom and heart to walk this path with me– all with such grace on her part.

I’m grateful that my best friend M has taught me the value in meditation, patience, and compassion.

I’m grateful that my Mom is my best friend.

I’m grateful that my husband is my best friend.

I’m grateful that he gets me.

I’m grateful that I have a beautiful office where I am writing this from.

I’m grateful that my family would go to the ends of the earth for me and my health.

I’m grateful for my doctors, researchers, physician assistants, medical assistants, nurses, nurses who give me my infusions, people checking me in at Dana-Farber, my surgeons, my nutritionist, and everybody who has ever smiled at me or said a kind word to me at any of the institutes/hospitals where I have ever been treated.

I’m grateful that my oncologist hugs me when he sees me.

I am grateful for the nurse Alexia Marcous who took care of me when I was in Brigham & Women’s Hospital after my surgery last February.

I’m grateful that my surgeon wants to do everything he can take to help me, and bonus:  He has a great bedside manner!

I’m grateful that there is a shot that can help with my glaucoma. Having said that, I am also super grateful for Ativan.

I’m grateful for the support of the Cancer Hope Network.

I am grateful that I can sleep every morning until I need to.

I am grateful for naps.

I am grateful for my kitties who cuddle with me and sit on my chest and purr and make me pet them instead of looking at my phone.  They are reminders that nothing on my phone is as important as what’s right in front of me.

I am grateful that through my meditation and spirituality practices these last few years, I have learned how to let go, forgive, and find freedom in the unknown (sometimes).

I am grateful that Facebook has kept me connected to so many kind and awesome people.

I am grateful for the Jimmy Fund.

I am grateful that my husband understands my need for coffee.

I am grateful for YOU.

What are you grateful for?  xo.

 

Us

0

As we drive home the sky turns magenta right in front of us; Daylight Savings Time is coming to a close, just as autumn is.  Though winter doesn’t officially start until December 21st (SHL’s birthday, as a matter of fact), it is November 5th and we are getting ready to turn the clocks back and all of a sudden it starts to feel “winterish” to me.  It’s as if the air changes overnight.  I can smell the cold weather coming, and as I slide into the car with just a linen jacket and sweatshirt I feel a chill go through my body and wonder (curiously and bitterly) where my winter coat is hiding at home.  Probably lurking in some extra closet in the house, just waiting for its turn to be worn again.

A few days before:

I arrive where it’s warm (or supposed to be), albeit it a bit rainy.  M and I have flown in from Miami and Boston, respectively, and stand in the driveway of our best friends house in Austin, eagerly awaiting her husband to go in and ask her to come out to get something from the car.  She appears, shuffling her feet tiredly, looking down at the ground.  Never in a million years does she think that we will be there when she looks up.

But there we are.

We could sense, as best friends, that she needed us.  Also her birthday is approaching.  We agree that she is the kind of person who is always taking care of others, especially her husband and three little kids.  But even her friends and parents and extended family and probably even people that she has just met (that’s kind of her way).

This time, we want to take care of her.

It doesn’t work out like that exactly, because of course she still goes into taking-care -of-mode and cooks for us, making us the pumpkin coffee that we like in the mornings and setting up toppings for tacos for dinner at night, but M and I do our best to take care of her, too.

Mostly we talk and laugh.  Sometimes we get teary-eyed.  We lift each other up.  We listen.  We support.  We give ideas, and sometimes advice.  Sometimes we just say to each other, “That is really hard.”  M points out that although we all have different challenges in life (career, family, health), we are all at a point in our lives where we’re trying to take better care of ourselves, trying to find purpose and meaning, and trying to find that balance that seems, most of the time, almost unattainable.

We remind each other of the things that we cannot seem to see in ourselves.

My heart almost bursts open with love not just for A and M, but for A’s family too.  It was what I had hoped it would be when we left college and started lives outside of each other:  That her husband likes me, that I like him, that her kids know who I am.  Though I had imagined us vacationing together, renting a house on the beach somewhere every summer for a week in August, all of our kids running around together and feeling like they were cousins or best friends, I realize that the vision has had to change.  A vacations with other families, and I give these kids no “cousins.”  But whoever said that you can mother in lots of different ways, I realize with relief, was right.  The kids call us Marla Auntie and Sam Auntie and we steal glances and chuckle with love every time they do something adorable (so basically most of the time that we’re together).  We keep the kids company while one has a piano lesson, building towers of Legos, or playing 20 questions (the little one doesn’t yet understand the concept and just tells us what she’s thinking of immediately.  “Cheetah!” she yells out, so happy with herself, and even her big brother just has to laugh).

We go to the kids elementary school and get to see little D accept an award at school for “fairness,” for listening and including others in his play so well and for not just “playing by the rules,” but most importantly, “with his heart.”  The night before he tells me that he’s shy about receiving this award in front of the whole school and so we practice, me pretending to hand him the award and him smiling and saying thank you.  He is off-the-charts excited that the Principal who is giving him the award may say his last name wrong, in which case he would get a dollar!  He asks me to snuggle with him in his car bed and I just can’t get enough of his questions for me:  Sam Auntie, did you have assemblies when you were a kid?  I tell him about what I remember from my elementary and middle school days, the poem that my friend and I acted out (what was the scenery like he asks?  Such awesome questions), and the play that I was in in the 6th grade.  I tell him that I was Smee in Peter Pan, “Captain Hook’s right-hand man.”  I forget that he’s only 5.  A few minutes later he asks, “Sam Auntie, who was the left hand?”

He reminds me that I can love and listen without being an actual biological mother.  I love those kids so much and just want to continue seeing these little magical beings blossoming.  A and her husband are doing such an amazing job with their family, I am in awe.

We celebrate A’s birthday with chicken nuggets for the kids and pumpkin ice cream with Bailey’s for us.  (!) We shop (what we do best) and we reminisce about our shopping escapades, even back in college (some things never change, and that is comforting).  But of course there’s so much more to each of us and so much more to our relationships:  We fill each other in on more details than we often can over the phone, in text or email.  The real nitty-gritty.  Our visits bring us closer, if that is even possible.

We put a candle in the ice cream and I hope that A makes a wish about herself this year.  I hope that even in the sacred moments of each day when she is taking care of others, thinking about others, doing for others, that she can find it within herself to see what I see when I look at her:  A sensitive, compassionate, loyal, thoughtful, smart being.  She deserves so much happiness!  She’s the kind of person who can have meaningful conversations with a homeless man on the street or the CEO of a huge corporation.  She can cook a delicious meal with her eyes closed and throw a party like it’s nobody’s business.  She listens to my fears about cancer and life and she weeps with me knowing that I can’t have children, in a way that only a sister truly can, and then helps me to get back up and want to dig back into life again.  She gives me advice on my writing and speaking dreams and how does she know these things?  She’s so wise.  She always has been.

I remember the first time we met; her Pet Shop Boys poster proudly displayed in her dorm room, me showing her where to get her college ID, my Mom’s chocolate chip cookies and us rushing together and then ending up in different sorority houses (we each became honorary members of each others sororities because we were always together), and neither of us ever guessing that 21 years later we would be here. Family.  Love.  Life.  Fear.  Adventures.  Traveling. Challenges. Cancer. Marriage.  Houses.  Friends.  Sisters.

Us.

You can’t change things for others, but you can remind them of who they are at their core. I hold that hope for her dreams even when she can’t hold them for herself (we all need somebody to hold our hope for us sometimes.  She has done it for me countless times).  Yes, you can’t change things for others, but you can remind them what they can change for themselves.  And you can also remind them that sometimes, there is nothing to change.  Sometimes, they are perfect just the way they are.

And they have always been.  xoxo.

this-is-so-us