A Good Day

2

Today was a good day.

I worked a full day (for me, which is part-time) for the first time in weeks.  As I walked into the office this morning I heard a dog collar (which turned out to be a dog bone encrusted with rhinestones) and was greeted with the most beautiful Cavalier King Charles Spaniel that I had ever seen– Dallas, my co-worker S’s new puppy!

Those of you who know me well (or heck even not that well at all) probably know that I’m a super-duper animal lover.  I grew up with dogs and SHL and I obviously have our fur-baby cats and are ourselves pretty close to getting our own dog, too.

Here are a few pictures so that you’ll believe me when I say just how cute she is!  She loves to play fetch, running down the hallway shaking her little bottom and wagging her tail.  She has what I call “man hands” from Seinfeld– huge paws for such a little girl!  Her ears are soft and floppy and they fall casually into her water bowl when she’s lapping up the good stuff.  Filtered water is best, our co-worker C (another crazy dog lover) educates us.

Take a look into my morning here (jealous much?  ;) )

After work I came home and had a little down time before popping out to the spa.  I was there for 3 hours (3 different services) and feel like a new person!  (It’s been months since I’ve been able to sit comfortably for anything like even a haircut.  I did it once but it was not pleasant).  My colorist even gave me some pink streaks and a free blow-dry as a token of kindness after my pain the last few weeks.  How sweet!

I picked up a turkey burger on my way home from my favorite, The Cottage, and didn’t get a stomach ache after eating it!  It’s a beautiful night here in Boston and my heart is filled to the brim with gratitude for being able to work, love, play with puppies, be pampered, eat my favorite foods without discomfort, and soak up this beautiful weather.

I’m not 100% and I may not be yet for a while, but hope has found its way back into my life again.

Yes, today was a good day.

xo.

Sam with tiger ears

 

 

 

Chapter 3: Closed

2

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

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

Captured

5

Nyquil brings me strange dreams.

I’m in the middle of a mall, which was a few seconds ago supposed to be an airport.  I’m late for my flight.  I was staying at a friends house and overslept; I jumped out of bed only to see the car I had hired to take me to the airport drive off into the early morning sun.  “Wait!” I yell through the window, though the driver is already turning left out of the driveway and way too far away to hear me.

Somehow, I make it to the airport (now the mall), only to find out that we are under attack.  We are all hostages, being told that we either have to gather guns and shoot them, or be shot ourselves.

No doubt this is a reflection of the craziness of our society (Saturday night found me panicking when I heard of a shooting in a mall near the University of Miami where I went to college, and where my best friend M sometimes frequents.  Thank g-d she was nowhere near there that night).  The now all to common public shootings + the state of the world today with chemical attacks and my own personal worries like starting a new cancer protocol and I feel like I’m in a game of checkers.

Every time I jump over a hurdle, another one appears.  There are rules, and only certain ways that you can jump over these other players (read: obstacles).

Sometimes, I capture pieces.  Other times, my pieces are captured.

I toss and turn.  I feel pretty good after the prep for my radiation– king me; was proud of the fact that the doctors said that I did well (I take this as a personal compliment.  My body is not my own in so many ways but hooray, you got through the prep without weeping like a baby and your vascular system seemed to be just what they were looking for!).  However there is a wound where the puncture was, the catheter snaked from my groin into my liver, and that wound is bruised and hurts every time I sneeze or cough (which because of allergies is frequent).

But back to the nightmare, because even after being awake for hours I still feel like I’m in the thick of it.  I tell people that I can’t just sit around and wait for men to arrive with guns who may or may not shoot us, I must do something.  (Read:  I cannot wait for the tumors to grow and push on my vital organs until I die, I need to do something).  I sneak my way into back stairwells and try to figure out where I could hide should I need to.

I wake from this nightmare, one of the scariest that I’ve ever had, and feel beads of sweat above my upper lip.  My legs ache so badly, my knees feel heavy and my shins throb.  Just another side-effect of treatment, and I gently move my legs like scissors, back and forth, back and forth, trying to find a spot where nothing will hurt.

But something almost always hurts, and if it’s not a physical ache or pain or fatigue, my eye or my legs or my wound, it is my heart.

I tell SHL that I won’t be on social media much in the next few weeks.  He whole-heartily agrees that is a good idea.

Social media connects me to all of you; it lets me know just how many prayers are being said.  It lets me share my smoothies and juices and old nostalgic pictures of my brother and I in our Camp Sewataro sweatshirts sitting on the rocks on a Cape Cod beach.  It lets me post the pieces of my blog and the pieces of myself that need to feel like somehow, we’re all in it together.  Somehow, kids or no kids, cancer or no cancer, none of us are ever alone.  Oh g-d I feel so alone.  That’s actually how social media makes me feel these days.

Social media reminds me that I don’t just feel different from everybody else, I am different.  I’m not worried about my kid teething or paying for college, I’m worried about living long enough to see my nephew Bar-Mitzvaed.  I’m not minimizing other peoples problems (well maybe I am a little bit).  I am told that everybody is allowed to have their own issues– Of course they are!  But this is what sets us apart; I’ll never be able to truly comprehend your worries, and you’ll never truly be able to comprehend mine.  And if I had to take paying for college over cancer, I’d do it in a heartbeat.

You.  Me.  And such a big gap in between you and me.  Which leaves me over here, and you over there.  I ask my inner ally to guide me, but the gremlin speaks so loudly that her words drown out and all I hear is “You’ll never be the same.”  Damn you gremlin.

I try not to feel exactly how I do feel:  Different.  Inferior.  Alone.

The loneliness scoops me up into my very own cocoon and as I await radiation, as I put life on hold to see how this new treatment works, as I wonder how to live in the shadow of what could have been, I jump over a piece, only to be captured.

 

 

It Can Be, It Will Be, It Should Be

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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.

Motion, Commotion, and Compassion

4

OK, so here it is folks.  Something that I’m not “supposed to say” as one who lives with cancer.  Oh and who made up that rule?  Me of course.

Time is so precious.  I get it!  But sometimes things get in the way of you appreciating time– like treatment-induced diabetes and hypoglycemia and eye doctor appointments where they actually put a wire speculum on your eye to keep it open for a shot that hopefully stops abnormal blood vessels from growing– and to try and push yourself against that time and struggle is just too much.

I’m on auto-pilot.  The days are a little bit of a blur.   I don’t feel quite like myself and I’m not doing much about it.

There, I said it.  The hours, minutes, seconds that are so precious when living with an incurable disease have begun to run into each other like a sentence that makes no sense.  Perfect because cancer makes no sense.

It’s been over 3 weeks since I heard from my doctor that he doesn’t think my current treatment is working; if it seems like things are moving like molasses-slow it’s because they are.  Usually I would have had a plan by now.  But my doctor went on vacation (uh, can he do that?  I have cancer), and now I’ve been waiting to see another doctor for a different kind of consult (got to dot your i’s and cross your t’s.  It’s too huge of a decision to make without doing your homework).  And believe me, we’re on the ball.  But I guess if they’re in no rush, this means that I’m not about to croak any day, so I take this as a good sign?

It gives me so much time to think about the croaking thing.  To think about the choices that I have to make– so grateful that there are choices, but we never really know if we’re picking the “right” thing or not.  Nobody can tell us, nothing is a guarantee.  We rely on the “one day at a time” and “listening to our intuition” and “doing the best research that we can,” and we give it up to g-d and the universe and pray that these decisions result in more time.  More time to find a cure. More life.  More love.

Please g-d.

Here’s the truth:  I’m just going through the motions.  Not when it comes to figuring out the next steps of my treatment plan, but just rolling through the days that entail work and cleaning the house and catching up on emails.  When my alarm goes off at 7 in the morning I think about how much money I would pay to be able to stay in bed until I’m good and ready to get up.  When I’m at work it’s usually a nice distraction from the rest of the world, though some days it’s harder than others to help others.  When I rest my head on the pillow at the end of the day I sometimes feel so relieved that I don’t have to talk or write or type or listen or do anything.  I just want to close my eyes and not have to do anything.  Did I mention that I love doing nothing right now?

Life feels so exhausting right now.

I long to get back to the me who feels in her own body, who feels grounded and filled to the brim with hope and possibility.  I long to feel like myself; I can’t put that exactly into words, I’ll just know it when I feel it again.

And, for the first time maybe ever, I let myself release and give in to the universe without any guilt (or as little guilt as I’ve ever felt).  I wish that I was taking better care of myself; wish that I hadn’t eaten that (frozen) left-over birthday cake weeks after my birthday, wish that I could move my body even in slow-motion on the arc trainer in my basement, wish that I could sleep more.  But I let it go.  I stop resisting.  This is how it is right now; cake and couch and getting up at 7am M-F.  “Let go,” I tell myself when I am rewarded with sleep (or even just with my nice comfy warm bed).  I’m not letting go of hope or action and I’m not giving up, I’m just trying to bathe myself in compassion, for all that I have and am going through.

This may actually be what my body and mind need right now:  Stop the soul-searching, just be, watch Real Housewives and put off paying the bills and put off even writing because you’re too much in your own head.  Don’t do much of what you don’t want to do, because so much time during the week is taken up with doctor’s appointments and needles and tests and too much thinking.

I’m going through the motions all while trying to quiet the commotion in my brain.

These are the thoughts of a cancer patient.

 

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 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 ug-d, BYOE (bring your own everything!).

Love,

Sam xoxo

I Am The Sky

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you-are-the-sky

“Is that the best you’ve got?” I wanted to scream into the shades of blue in Tulum.  I could feel the sand slip between my toes and underneath the heels of my feet until nothing seemed to support them, as if I was suspended between little ripples of water. Each wave reminded me of a different choice, decision, path, obstacle and heartache in my life, and when I looked into the exposed space/shelter I thought “I will not let you push me down.”  Wave after wave after wave hits the shore.  And yet, I am the sky.

I dig my feet deep into the velvety sand, anchor my body in balance the best that I can, arms up and at my side, and wait for the next wave.  I want to be mindful of every second.  I want to feel the sun actually sink beyond that first layer of skin, warming my heart.  I am scared of drowning.  But I never ever want to forget that I am the sky.

I don’t want to anticipate that a big wave will approach; it is exhausting trying not to think of the future but also so tiring trying to stay in the present.  I don’t want to anticipate it but sometimes I can see it.  It’s miles off or it’s close, or sometimes I turn my back and get knocked over. And yet, I remember through the tenderness of the sand and the heat from the sun and the stillness of the meditation and the difficult stretches in yoga that each time I am able to stand upright and let the waves hit me and then pass, each time a wave knocks me down but I find my core, I will get up again. Because I am the sky.

Standing underneath this giant blue horizon, I finally understood just how much I wish to not be defeated.  Because I still have so much more to do.  So much love that still needs to live.  I need to take care of you.  I am the sky.

When Geralyn Lucas was getting her chemotherapy and her days were filled with needles and nausea she would say “I am the sky,” reminding herself that none of those awful things could stick to her… And now I say it too, beneath the sky itself.  Now when I have to check my glucose levels I say it out loud as well, as the prick of the needle makes that little red circle of blood come to the surface on my already calloused fingers.   I have just found out that I have treatment-induced diabetes, and life has changed once again.  I was always thoughtful about my eating, but now I have to count carbs and make sure to have my pens with me and not go too long without eating and know what to do if my blood sugar gets too low (like it did while in Mexico; sweating, shaking, downing glucose tablets at 3 in the morning). Checking my levels with that damn glucose monitor that actually hurts more than the 3 doses of insulin that I must give myself every day.  Another “thing to get through,”  although there really is no “through it”– with any of this– there is only learning to live with it.  But I tell myself through the anger and the confusion that these feelings of loss and sadness and betrayal cannot stick to me, because I am the sky.

Geralyn named her first-born “Skye,” even though they said that she could never have children.  She is the sky.  I am the sky.  We are all the sky.

“Face it then fight it” has become my new motto (after a lot of swearing, eating chocolate– pre-diabetes– and crying tears that fall all over my steering wheel at red lights). The clouds are there, some days filled with rain and gloom and some days rays of sunshine and all kinds of the highs and lows just like life.  I grieve–I am encouraged to do so which is a relief– and I try to face my fears through compassion and loving acceptance. I try.  I think this is what matters.   I also thank g-d and my lucky stars for things like doctors, treatment (I got the diabetes because of the treatment but the treatment could be– will be– saving my life), reiki, massages, yoga, green juice, coffee, gratitude confetti, naps, and the ocean. Yes, the ocean.  Because of the waves I can do so much more than I ever thought that I could do.  Isn’t that strange, how adversity gives you so much more of yourself because you can either sink or swim?  It’s a double-edged sword; I would do anything not to have to navigate huge waves, but since I do, I am a different person than I was four years ago.  I am the sky.

I go low– really low– because it is so unfair and so sad, and then I go high because I have to accept after grieving.  I have to remember the blessings.  I have to do both– cry and scream and be grateful because that is who I am.  I feel good, bad, indifferent, numb, crumbling, rigid, loving, accepting, stable, inconsistent.  I am human.  I think of my friends and family and want to weep for how much unconditional love they have shown me.  I can weep.  I am still the sky.

Geralyn said it, and now so do I.  No matter how many needles they stick in us, no matter what else happens, everything else is just the weather.

We are the sky.

Creation of Chaos

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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.

 

Latitude from Gratitude

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Can we just talk about some latitude for gratitude, please?  Since being diagnosed with cancer the second time around, I have made gratitude a daily practice.  I have found that it lifts me up when I’m down, procures me to live life with more intention, heart, and adventurous spirit, and has saved me many times from throwing myself a big old pity party.

And yet, I realized the other day, it is not great to tick off a list of things that you’re grateful for when you’re not really connecting to those things.

Case in point:  I’m in the shower the other night and I’m washing the day off of me and thinking about my top 5 favorite things, because one of those is a nice long, warm shower, when I start to go through my list of things to be thankful for.  I do this almost every night and sometimes it brings me relief, sometimes joy, sometimes tears, and sometimes quite honestly it’s just a few seconds of thankfulness and then I’m putting my pj’s on and thinking about what the next episode of The Affair will bring. Hey, I’m human.

But this other night, while I ticked off the things that I was grateful for that day (the warm shower, having a job, SHL and my family, not having treatment on that day, my new cozy pajamas, that cup of hot chocolate that I indulged in, my plans to see friends in the coming weeks), I realized that I was actually feeling kind of numb.

It’s not that I wasn’t grateful for all of those crazy-good things, of course. But on that particular day I was actually just feeling like I needed to get through the day.  Now this isn’t my usual motto– “just get through the day;” I like to make sure that in fact that I am not just going through the motions, but on this evening I was just so.tired.  And a little bit crabby, too.  Work has been busy and my fatigue has gotten the best of me lately, with little energy to work out or do much around the house, napping every day for hours and feeling a little “out of sync” with the rest of the world.

And then I realized:  Gratitude as part of a daily practice is wonderful, but only if you can really connect to it.  If you can really feel the appreciation like a bubble in your heart ready to explode with that feeling you get when you realize that you have so much.  

I know I have so much.  But lately (the past few days), I’ve also been feeling the injustice around having cancer.  Around decisions being made for me, like not being able to have children or how often I need to go to the doctor (8 sets of scans in 12 months doesn’t give you much of a reprieve from worrying).

And nobody really knows what to say, because nobody knows what it’s like to walk in my shoes, just as I don’t know what it is like to walk in yours.  And this brings up the lonely part; the part where I know people try, and love me, and say comforting things, but in reality there are times when I just feel so damn alone.  Out of sync with others my age, thinking about my mortality and things that most of my friends aren’t thinking about.  Worrying about things that most people my age thank goodness don’t have to worry about.

And on these days, I don’t always want to turn to gratitude.  Sometimes I want to turn to chocolate, or sleep, or a funny movie.  Some days I want to hibernate.  Some days I want to yell.  Some days I want to cry so hard I fall to the floor.  Some days I actually like being at work so I can not think about cancer or the decisions already made for me or my next scans for at least a few minutes at a time.

I used to think that if I said something like what I just did, lighting would strike me. That g-d or the universe would punish me.  It was superstitious, it was harmful, and it was holding me back from allowing myself to really feel grief.  But now that I am trying to deal with suffering head-on, I realize that I need to allow myself those days where I don’t feel like I have to say, “Yeah, but it could be so much worse.”  We all know that it could, but there are times when it is also OK to say “this feels like despair.” Sometimes even though you know that things could be worse, it’s actually irrelevant, believe it or not.  Because to dismiss grief or anxiety or depression or suffering with “it could always be worse” is to dismiss authenticity, and in turn, to dismiss a person.  And I’ve learned, the very hard way, that often than not when you’re authentic with your feelings, they don’t get the best of you.

And so I what a yearn to say to the world is, please don’t dismiss me.  (I bet we’ve all felt this way at one time or another in our lives!). Please give me some latitude.  Please know that gratitude lives in my heart forever, but some days, my authentic self is one that hurts.

I’ve been working on trying to see things with more compassion– especially with those that annoy, frustrate, or hurt me.

Now I’d like to work on allowing myself that same compassion.

I know that we’re all our worst critics.  But I’m finally willing to give myself a little latitude.  Are you?  XO.