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.

 

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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.

 

 

The Days Long Before Cancer

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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.

 

The Waves That Were Supposed to Be For Us

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When I was in the hospital last week I was in so much distress that I made a deal with G-d.  “Please help me get rid of this awful restless leg syndrome and I won’t complain about anything else.”  At the time it seemed perfectly reasonable.  After all, that was what was bothering me the most– I couldn’t function because it was day and night– and who better to make a pact with than g-d?

I broke the pact.  My RLS is much, much better (thank you g-d), but now I find myself complaining about nausea, massive fatigue, and even a broken heart.

People think that if you get enough good nights sleep in a row, or enough cozy naps on the couch after work, that your fatigue will be cured.  I understand that because as with most things, it would be.  However, cancer fatigue is a whole beast unto itself.  You can sleep 10 hours at night and take a 2 hour nap during the day and still be so tired you want to cry just thinking about putting a dish in the dishwasher.

The fatigue creeps through my bones like a scary story.

People ask how I am and I’m grateful that so many care, but I’m also so tired of telling them how tired I am.  In fact, I asked my cousin today, “Should I tell the truth or just say that I’m fine?”  It’s that weird line between being honest and not wanting to bog people down with the same complaints all of the time (cue Debbie Downer from SNL).  But beware:  If you ask me every day how I am (because you love me and care), you will most likely get the same answer:  So unbelievably and depressingly tired.  Unless I decide to just say that I’m great.  You never know.

So that’s the nausea and the fatigue (most likely side-effects from the radiation that g-d willing is saving my life, so there’s gratitude for that).  The broken heart happened today when the woman who was cutting my hair (who is a total sweetheart) told me about taking her 9 month old baby to the beach.  The way she described sitting at the shore with him brought tears to my eyes, and I couldn’t help but think, “That was supposed to be me.”  She detailed his eyes and his smile sitting there at the beach, but the whole time I was picturing myself sitting at the shore with my own baby– maybe a boy– with the sun glistening off his brown hair making it appear just a little bit lighter, as mine was as a baby.  Instead of her son’s eyes, I thought about what my own child’s eyes would look like:  Bright blue, glistening every time a wave came up to greet us.  A smile, a clap, a gurgle.  Seeing the ocean, one of my very favorite things, through his (or her) eyes for the first time would be thrilling.

And then I felt it:  A piece of my own heart ached profusely and then broke apart, falling into those waves that were supposed to be for us.  And we all know, once something falls into that vast, beautiful ocean, you can never get it back again.

Cry, Rinse, Repeat

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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.

Chapter 3: Closed

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A commercial made me do it.

It was for real estate.  Could have been Realtor.  Could have been Redfin.  Something with an R and a little boy with a sweet face who said goodnight to his Mom while peering at the stars because clearly she was no longer with him.  He just looked so… lost.  Then his Dad buys a new house closer to Grammy and Grandpa and at night he looks through his new bedroom skylight of stars and smiles as he says goodnight to her again, this time looking more a bit more content.

I wept, got up from the couch, and went over and emailed my nurse from the fertility clinic where our embryos have been frozen for the last 4 + years.

It was a Saturday and I knew she wouldn’t get it until Monday morning, but I didn’t care.  It felt like then or never.

“Dear Sandra,

I don’t know if you remember me, but…”

I proceeded to tell her that we were ready to let our embryos go.

How could I ever do that to a child?

I waited a few days until I heard back from her and found out what we needed to do (a notarized letter).  I brought it up to SHL as he was cutting up chicken for dinner.  That seemed liked as good of a time as ever. I told him about the commercial and started sobbing uncontrollably.

After a long embrace and talk about leaving him to raise a child by himself, a conversation that nobody ever wants to have, we also dipped (again) into even just having the energy to raise a child (or children) when very often I don’t feel well.  What would that look like?  We decided we that we didn’t want to find out and went back to making dinner.

And just like that, I heard the door close.  Softly.  It didn’t lock, but it did shut.

We are Stars

Broken

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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

30 Things I Learned in My 30’s

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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

Creation of Chaos

2

Out taking a walk I hear the dribble dribble of a basketball; it’s actually warm enough in January in Massachusetts to be out in the driveway shooting some hoops.  I see a kid, a teenager, in a white sweatshirt with the hood up, jeans and sneakers and it looks like he’s just entertaining himself on a Sunday afternoon the way my brother used to when he was that age.

All of a sudden tears unexpectedly well up in my eyes and I think about my nuclear family.  Sometimes it strikes me as absurd and strange that in our American culture many of us grow up so closely with our parents and siblings and then when we leave the house, everything becomes so different and we become so spread apart.  (Especially after people get married and have kids).  I think about the sound of the basketball on the pavement back on Moran Circle where we lived until I was 9 and my brother was 13; about how the backboard and hoop got stolen one night on our quiet little suburban street, and we couldn’t believe that our dog Benji didn’t even give us a little bark to let us know.  I think about the vacations that my parents took us on; eating pineapple in Hawaii and drinking tea in Moscow and having a picnic not far from Rainbow Bridge in Utah.  There was cross-country skiing in Concord, dinners with my Grandma at the Wayside Inn in Sudbury, and watching the little planes take off and land in Marlboro while eating mint-chocolate chip ice cream. My Dad started me off early collecting things like bottle caps and pins that said “I love the piano” and my jean jacket just couldn’t hold them all.  My Mom and I would spend summers when I returned home from camp doing errands together (I loved it) and playing jacks on our cold tile floor. I remember my brother and I videotaped by my Dad as we told each other secrets and took long walks on the beach, lying on rocks like salamanders and soaking up that Cape Cod sun.  Us!

There are seven of us now, including spouses and kids, and we’re probably all together three times a year.  (Sometimes we get lucky and it’s four).  I know for a lot of families it’s way less, depending upon how far you live from everybody (and for some of you it’s way more).  But with geographical distance and jobs and health and kids, our time together is limited.  (And OK, maybe we get along better because we don’t see each other every weekend?  I can feel people nodding their heads.  You get it.  You would protect your family from a lion but you don’t necessarily want to do a Sunday brunch every weekend!).  And still, it just strikes me as funny, and a little bit sad, that I went from those family of four vacations to us being together only a few times a year.

As I continued to walk, I started to think about time, and relationships, and faith.  I have faith in my family, that they’ll never abandon me, that they’ll never stop loving me, that they’ll always tolerate my “mess.”  (And I’m not just talking about that nuclear family anymore; now my husband, sister-in-law and nephew are my family too.  And then I remember that things are supposed to change and shift and evolve and now, instead of just the four of us, we have SHL and my SIL and my nephew and how could we ever life without them now?  — We couldn’t!).

But lately, I’ve had faith in little more than that.  For only the second time since I was diagnosed, after coping with some side-effects that bring about more doctors appointments, change, and unknown, did I tell myself recently that I can understand how somebody with a chronic illness could, at some point, want to give up.

And as I walk I think about those who have worries, but who basically live a “normal life”, and I feel more separated from you than ever.  My insides ache not knowing or remembering what that feels like.  I feel as though I have a huge knot in my brain that is tied up in fear and everything else…well everything else just feels sort of foggy.  I long to unravel the ties that make up this fear, but every time I make a little progress gently undoing what has been done, another piece comes along and adds itself to the creation of chaos.

I’ve worked so hard over the last 3 + years on authenticity, managing my disease, trying to live life to the fullest, working hard on my perception of food and cancer and challenges and movement.  I’ve had days where I couldn’t get out of bed, and I’ve had days where I’ve knocked it out of the park at work and slept in SHL’s arms.  This is life, I understand, the motion of the waves, the wavering faith (if you’ve ever had anything bad happen to you), the broken heart that fills up with gold in those cracks where it has been broken, just as the Japanese believe that is the best way to mend a broken object. They believe that if something has suffered damage and has a history, it is more beautiful.

I long to remember the beauty in my own life; I know it is there. And I know that gold must course through those shards, so many of them living within me.  It is just so hard to see and feel the beauty right now, through the unknowns and the fear and the injustice of it all.

I think about how I had no say in this at all, and then I remember how much more I’ve learned to love life since all of this happened.  I like to think that I have no control, but my words carefully remind me that I’ve had many choices, that I have chosen to make my life better even while living with tumors.

I continue to go to my mat and sometimes that helps, imaging cords of love and compassion between myself and the world, between myself and the cancer.  I see a rose-gold energy that twinkles and encompasses my body and keeps me safe; and yet, outside of that meditation time, it does not keep me safe from everything.  What am I to believe?

Gabby Bernstein always says that the “Universe has your back,” and I used to believe it, until one bad thing after another happened.  If you believe in the law of attraction than my mindset needs to change shape because I don’t want to call negativity into my life either.  I want to face the suffering (as much as I really don’t), only in the hopes of being able to mend my own broken objects, my heart, my faith, my confidence.  Can you understand the dilemma just festering in my heart?

I understand that trying to face suffering while trying to let go seems impossible, but in the end again my words help me to understand that they actually fit together.  And so, I will find my way back, I will let the course take me where it needs to.  I will get through this because I have to, because my work and love is not yet done.

I can’t wait until I can tell you all that yes, the universe really does have my back.  And in the meantime, I need to have my own.

 

There Always Is

0

Dear G-d,

How are you?  Does anybody ever ask you that?  I know it’s usually about how we are.   Anyway it’s Sam here (chuckle, I know you know who it is), coming at you from zip code 02052.  Just wanted to say thank you for the good stuff this year.  Yeah I mean, a lot of things really sucked or felt scary in 2016 (Brexit, Syria, talk about building a wall?  Really?  David Bowie, Prince, George Michael, Alan Rickman, Alan Thicke, Carrie Fisher, Debbie Reynolds… TRUMP?).  But there were some good things, too, of course.

But first:

I will not compare my suffering to the atrocities that have gone on around the world, but I’d like to reflect on what kind of a year it has been for me, personally.  Is it selfish of me to talk about that G-d, when there is so much turmoil, division and fear in the world?  I pray for those who need our help, and I pray that I will figure out a way to be some kind of light in the world.  Can I pray for myself, too?  That’s OK, right?

This year I had 7 sets of scans and 6 of them showed growth or suspicious looking things in my liver.  I had 3 surgeries (almost 4 but was woken up from the anesthesia as the surgery could not be done), and countless doctor’s appointments.  Blood, IV’s, the waiting, the waiting… The waiting.  There was a lot of fear this year, a lot of unknown.

I’ve learned some really hard lessons this year, G-d, and I suppose I should start with that, because it’s always nice to end on a high note (that’s why SATC went off the air after 6 seasons).

Anyway, I didn’t ask for these lessons, but we never really do, huh?

I have learned that the dark and stormy days are just as bad as you think they will be, and you can’t sugar coat the bad stuff.  The stuff of life.  But I’ve learned that leaning in to the suffering, at least a little bit, can actually help to release some of the fear.  I’ve learned that I’ll probably always be afraid but also, it’s cool to live for today.  And if you don’t know what to do, sleep on it.  I totally learned that this year.

I have learned that some fractured things stay fractured.  Some things unravel and never get tied back up again.  Other things slowly form their way back to some kind of normal semblance and you can’t imagine how you ever got through that tangled web of difficulties.

But you did.

I’ve learned that fear can be felt in all different parts of the body, not just the stomach and the heart, but even the tippy toes.  Fear can live everywhere, and if you don’t learn how to manage it, it can take over your life.

But then I found the mantra, “Everything I need, I already have,” and it kind of changed my life.  I wanted to believe that you and the universe (are you one and the same?) had my back, but I was stuck between being afraid to think anything was certain, and the painful uncertainty of life. Stuck between some strong magical thinking, and a body that I did not know (or understand).

Somehow, learning to stay in the realm of hope, living right underneath it (for the most part), and having a sense of humor combined with the warm comfort of spirituality and love, can heal.  Oh yes it can.

At the end of December we tend to think of past years, saying goodbye to the old, rejoicing in the rebirth of the new.

I remember ushering in 2013 with SHL and friends, feeling as though that was going to be the year that we got our baby.  Instead, I got cancer.

I’ve never been a resolution kind of girl.  I just don’t see how all of a sudden I’m going to stop craving chocolate and start craving 5am workouts between 11:59pm on December 31st, and 12:00am on January 1st.

I do the best I can every day.  Some days I really “mess” it up, and other days I nail it with such gusto I feel like I should be on the cover of a magazine.  Most days I’m somewhere in between.

(Another thing learned in 2016 is that “mess” is actually just life.  So you either embrace it and live your truth, or you miss out BIG TIME).

A friend recently sent me an email from a motivational blogger with some intriguing questions with which to look back on the year, and to set some intentions for the coming year.  One of the things that she asks is:  “What do you want to let go of?”

I thought long and hard about this one.  I’m not a hoarder per se, but I do still have some birthday cards that my 3rd grade teacher has sent to me over the years, a signed baseball that an old Minnesota Twins player gave me at Fenway Park back around 1986, and an old broken necklace that I never got fixed and is totally out of style, but I just can’t bear to get rid of.

Here is what I do want to let go of:

  • Self-loathing
  • Carrying around responsibility that everything I eat, drink do or say has caused my cancer.  Carrying around the “It’s my fault” clause.
  • Fear of heights, but only for the good stuff like going on a hot air balloon ride.
  • Control.  Especially of my spouse.  It grows out of anxiety and now that I know that, I am finding it a little bit easier to let go (and admit).  But it’s hard, and I’d like to try and continue working on this.
  • The “little things.”  I’m constantly aware of this (while giving myself some space on it; just because I have cancer doesn’t mean that I don’t sometimes want to give somebody the finger for some silly little reason), and I think it needs to stay on the list for 2017.  Dishes in the sink, getting mad when I let somebody into traffic and they don’t thank me (SHL says not to do it for that reason, but it’s just a pet-peeve of mine!), people not doing what I think they should be doing at work.  Get.Over.It.  Focus on the “bigger stuff.”
  • The “mean girl.”  I was never a bully as a kid, so why would I bully myself as an adult?
  • The thought that I can’t do something.  I hate when people tell me that I can’t do something (“You may only live for _ many years.”  What do you know?!  Or  “You can’t pass this math class.”  Well looky here, I just got a B).  And yet, I tell myself that I can’t do things all the time.  “You’re not (fill in the blank) so you can’t do it.  I”m tired of telling myself that I can’t do something.  There are only limitations if you believe that there are limitations (thank you for the reminder M!).

So no resolutions.  Instead, intentions.  This is what speaks to me and has in 2016. So here is what I intend for 2017:

I intend to start every day with a fresh, clean slate.

I intend to believe in myself and my capacity for greatness.

I intend to keep tapping into my potential.

I intend to love greatly, deeply, and authentically.

I intend not to hold back on life.

I intend to say YES to things that I want to do, and NO to those that I don’t (within reason).

I intend to write, speak my voice, help others, share my wisdom and my faults/mistakes/lessons learned.

I intend to stay healthy.

I intend to continue tapping into all the happiness that is available to me.

I intend to live in the light.

I intend to keep singing show-tunes around the house, in the car, at work…

I intend to never stop sneezing the “Kobrick Sneeze.”

I intend to eat a hot fudge sundae any damn time I want.

I intend to eat a rainbow of healthy foods in between the ice cream sundaes.

I intend to move my body.

I intend to help others.

I intend to vacation/travel the hell out of 2017.

I intend to live with hope.  (That’s so my jam. Wonder if that term will still be popular in 2017?).

I intend to be the best wife, daughter, sister, aunt, friend, social worker, and cancer advocate that I can be.  This doesn’t mean striving for perfection, this means living my truth.  In this way, I will be good for those that I love, and good for myself.

I started to make a list of all of my blessings and all of the fun that I had in 2016 which immediately put me in a better state of mind about what I had deemed as a really crappy year.  Maybe you should try it too!  Here is my list…

Thank you 2016 for the girls sleepover with my camp friends, Ireland with my Mom, Spain and Morocco with SHL, surprising A for her birthday, being in Miami w/ M, forming really beautiful new friendships, loving my old friends, going to the beach with my nephew, having my brother sit with me for my first treatment this year, finding gratitude confetti, having the time off work to deepen my spiritual practice, meditation, my spiritual teachers (Kris, Gabby, Glennon, Deepak Chopra, and lots more), meeting Geralyn Lucas (a-mazing), applying skin masks with my cousin (thank you for living over a Sephora!), feather tattoos (also courtesy of my cousin), street tennis, the best Mexican brunch ever, finding the Super Woman pose and doing it w/ my Mom whenever things get stressful, the love and snuggles that I receive from my kitties, SHL’s US citizenship, sitting on the Schwartz Panel for Compassionate Care, speaking to Jimmy Fund fundraisers, getting a piece published on the Dana-Farber blog, nurturing my relationships with the ever-amazing Cancer Hope Network (Hi Sarah!), going to NH for my birthday with SHL and having him serenade me on the street with a random guy’s guitar, all of the beautiful flowers and care packages sent to me during my recoveries, finding the joy in adult coloring books, all of the abudance of love and generosity by those who support our Team Lozier Mini-Golf Fundaiser (raised over $14,000 this year!  Major props to you guys, my parents, and to Josh & Katie at Dana-Farber/Jimmy Fund who help us so much!), gratitude to SHL for cooking so many delicious meals for me (who knew I married such a little chef?), game nights with new friends (who me, competitive?), red lipstick, Red Sox, cozy socks, my first (and last) wheat-grass shot…

And last, but never least, I am so grateful for the immunotherapy that I am receiving at Dana-Farber.  I am grateful that it seems to be helping, I am grateful that I can get the treatment, and I am grateful for my doctors, nurses, and everybody who gives of themselves at Dana-Farber.

You know what’s so cool, G-d?  As soon as I started to think about the GOOD in 2016, all of those awesome things just came rushing back!  And the bad just kind of took a back seat while I got to relive some of the light-filled stuff.  Huh, there was more than I thought.

There always is.

Wishing you all a bright, love-filled, super healthy and amazingly happy New Year. Bring it on 2017!

Peace, love, health, gratitude confetti, unicorns, green juices, ice cream sundaes, miracles, feathers, ladybugs, warriors, and love.

Sam XOXO

Thinking about the joys of 2016, here are some of the “Greatest Hits:”