A Lot of Sparkle

0

You know that excitement when you’re on a roller-coaster that you’ve never been on before, and you’re wondering if you should have agreed to this but you’re also feeling so freakin’ excited? You haven’t gotten to the scary part yet or made a loop or anything and you almost feel giddy, right before your stomach drops?  Well I’ve never been a big fan of the stomach dropping, but the moments before of pure delight and fun are something that I wish I could bottle.

I felt it yesterday, that roller-coaster feeling. I don’t remember the last time that its lived within me, and it shook me to my very core (but in such a good way).  I stopped what I was doing and listened to my body, immediately recognizing that whatever was making me feel this way is something that I should clearly be trying to incorporate more of into my life.

Yesterday was one of those sparkly, good days. There have been some since December; the most thoughtful packages have arrived from friends with things to ease my tired body like lotions and socks and books and chocolates and more than that, just knowing that people are thinking of me makes me feel, well, not alone (you can’t put a price on that).  There have been days like my birthday where I am with SHL and we just play and forget about work and bills and chores and cancer and surgery.  There have been days spent with my nephew where we played soccer and read bedtime stories together and made pancakes.  Those are sparkly days and I’ve loved them, they’ve just been few and far between over the last few months with all of the doctor’s appointments, scans, work, kidney stone and then more intensely the liver ablation surgery.

But yesterday was filled to the brim with goodness, and I delighted in it at every turn. I had absolutely no idea when I got out of bed that so many lovely things would happen.  It started with me calling Brigham and Women’s Hospital and tracking down the name of the nurse who took such amazing care of me after the last surgery.  I wanted to nominate her for the Boston Globe’s “Salute to Nurses” that will run in May and the nurse who took my call was so thrilled to hear this that she said she wanted me back on their floor after my next surgery on Monday to take care of me again.  She said that she couldn’t promise anything, but that she would text her nurse manager and do her best.  It may seem like a little thing (?) but I literally wanted to cry when I got off of the phone with her.  I felt so touched that not just my family wanted to take care of me, but strangers did so as well.  Yes they’re nurses and that’s what they do, but it seemed completely above and beyond to try and get me back onto their floor.  I felt taken care of, which to me is a feeling of security, something that you want to hold on to so hard when you have an illness that makes everything you know feel so threatened.

Shortly after that I had lunch with my Jimmy-Fund contact, a new contact this year, meeting him for the first time. We hit it off immediately, debating whether or not Jerry Seinfeld is still funny and doing Larry David impressions of Bernie Sanders.  Anybody that gets my sense of humor is golden in my book!  Josh gave me so many great ideas for our upcoming second annual Team Lozier mini-golf fundraiser, I began to get more and more excited.  We raised a little over $12,000 last year and we want to raise even more this year!  Stay tuned for how we do!

I came back to work with a pep in my step. Connecting with new people, directing a tournament and raising funds for my doctor, nominating this nurse, and then seeing on both Facebook and Twitter a picture of SHL and myself from last year’s event with a blurb about the Jimmy Fund just made my heart soar.  The more that we can get the word out on Dana Farber, the Jimmy Fund, good patient care, better communication with doctors (who really do want to take the best care of us possible), the better. Something about all of this just feels right.

I came home last night on Cloud 9. I couldn’t stop telling SHL about my day.  “And then this happened, and then that happened…!”   Maybe the universe is trying to tell me something, or maybe I’m starting to get the courage to ask for things of the universe (ugh, scary…maybe).  I feel as though I am just finally waking up and opening my eyes and seeing that the world is full of miracles, opportunities, and synchronicity.  (These are things that I always thought were so hard to obtain before).

I thought that the day couldn’t get any better until I saw that a package was waiting for me on the counter. It was a beautiful mug from a friend of mine from college that she had made just for me on Etsy.  Hot pink with a gold heart (she had no idea those are the colors in my office where I imagine great things happening with my writing) and then the words “love myself just as I am.”  I broke out into a full-on smile because I knew just where she was getting this from.  Last summer my friend M and I wrote down on index cards at the Chopra Center one intention that we wanted to leave behind there.  I had written down “Love myself just as I am.”  A tall feat, I had thought at the time.  I had shared it with my friend D because we’ve always supported each other in our greatest goals for health and happiness.  She had remembered and had given me the mug so that whenever I look at it I can always be reminded that to love ourselves is one of the greatest gifts that we can receive.

So as I approach my next surgery with fear, optimism, dread, and hope, and as I await the results while still in the hospital, I listen to what these important pieces of life are telling my heart and my soul. Write.  Speak.  I hear the voice that says, “Tell your story.”  I have to begin to let go of thinking that I need to know how to take care of myself effortlessly before I can help others.  I do nothing flawlessly. But maybe I don’t have to get it perfectly to help others; just maybe.

What is your heart and soul telling you?  Follow it.  xo.

To love myself

 

Chopra Center card

 

A Little Elbow Grease Can Go A Long Way

0

It is such a complicated world that we live in, isn’t it? Though it feels that things are just getting increasingly more complicated throughout the years, I know that as long as man has roamed the earth there has been hunger, pain, suffering, and war (stick with me here, it gets better).

I’ve been thinking a great deal about the negative aspects of the world lately because of all of this election nonsense. I say nonsense because in what other country do they start campaigning and throwing commercials in our face for a year and a half before the actual election?  It gets to be sickening after a while.

Of course the other piece that is even more sickening than that—and destructive—is Trump. He was in my dream last night, or shall I say nightmare, walking the beach with these crazy sunglasses on, his lips pouting, his hair flopping in the breeze.  Why I’m dreaming about Trump (and without a shirt on!) I don’t know; as if it doesn’t cause enough stomach aches in real life, now he has to show up when I’m sleeping, too.

I don’t follow politics as closely as the rest of my family, but enough to know that I am scared. What has been disheartening for me is to see people at his rallies cheering when he says something despicable, whether it’s racist, violent, delusional, or just plain dumb.  I think living in my little bubble here outside of Boston sometimes has me forget that there are plenty of people in the country (never mind the world) who don’t necessarily think like I do (not like everybody in this neck of the woods thinks exactly the same, but the north east is pretty progressive and liberal compared to some other parts of the country).  I am just going to say it and maybe it seems dramatic, but not only am I scared for people living in poverty and people facing racism in their everyday lives and people who somehow think that Trump can give them a leg up just because he doesn’t have a history of being a known face in politics (instead he’s known for real estate, beauty pageants, and the Apprentice), but I am scared for Jewish people.  There, I said it.  I’ve had little itty-bitty bouts of anti-Semitism thrown my way in my 39 years, but I have a feeling that things could get a lot (lot) more crazy if he was in charge.

Remember I said that it would get better?

Having said all of this, I want to lean towards the light because otherwise, it seems hard to get out of bed some days, doesn’t it? When we think about all of the suffering in the world?  This morning I was listening to Andrea Bocelli in my car on the way to work and I can just never get over how beautiful his voice is; it still gives me goose bumps after all these years.  And it made me smile—knowing that in a world so full of bad, there is also so much beauty.  I thought about a call that I got recently at my job from a man who was out of work and scared that he and his wife and four children were going to lose their home.  I asked if he had gone to a food pantry and he said yes, occasionally, but then had stopped, because he “felt like others needed it more.”  He said that when he did finally get back on his feet, however that would happen, he told his kids that they were going to buy food and give it to the homeless in their town.  My mouth dropped open—here was a man who was suffering, who had taken care of his family and worked and then gotten sick and now was living without any real guarantee of keeping his home or putting food on the table, and here he was already thinking about other people.  It again reminded me of the goodness in this world.

And that’s what we need, especially now, I think: To be reminded of all of the good that surrounds us, because there truly is so much of it.  A friend who will come over and watch a cancer documentary with you knowing that boxes of tissues will have to be present, food from a friend of a friend who you have never met but who hears your story and then drops off pasta and meatloaf after a surgery, the friend who has her Mom’s bible study all praying for you (whether we have faith in the same religion or not, a prayer is a prayer and I could not be more grateful for the healing prayers being sent to me with such love).  The light of this world can be seen in a person, an animal, an object, a feeling, but it is important to look for it, to acknowledge it, to place it in not just a fleeting thought, but a forever-lasting book of gratitude.

My friend M says that after a tough time she began to wake up every day looking for the “play” in life. Now she sees it more often than she ever has because she is open to seeing it.  I love this expression:  Not “You have to see it to believe it, but “You have to believe it to see it.”

I look for signs, miracles, feather, beauty. I recently turned 39 and SHL took me up to NH and you should have seen the look on his face before we left– so excited to get me away for a few days so that I could just untangle myself from the surgeries and the to-do lists and work and the anxiety.  I really felt it; not just the exuberance at being able to play for 5 straight days, but also the way in which he was taking care of me. I felt and still feel the joy in getting birthday wishes from my closest circle of friends to people I grew up with, people I went to college with, and people I worked with.  I seek out connections and I try to stay-in-the-moment, to realize that today is all that any of us have.  Realistically there are days when I can’t do it, but the days that I can, I bask in it.

I know that everybody has a right to their own likes and dislikes, perceptions of the world and values, and I understand that getting older can be difficult. But I love my birthday because it is a celebration of being alive, of being loved, and of making wishes.  And I pray for lots and lots (and lots) more birthdays so that I can cultivate even more joy and fun in my life.   I don’t think that life was meant to be this hard, but I’m realizing now that by default at times it certainly can be.  Sometimes maybe we need to put a little bit of elbow grease into making things feel easier (which seems counter-intuitive, but what I mean by this is that instead of sitting back and not being open to change, a little bit of hard work and insightfulness into self-care and joyful living can be enough to move the energy around) .  What does this mean to you?  For me it means that I listen to my gut, I meditate, I weep when I need to, but ultimately anything that crowds out my joy has got to go (as much as it can).

Lean towards the light, I hear Gabby Bernstein say. And so I do.

 

Finding Peace

0

I caught a glimpse of the “Old Sam” recently. How I have missed her.  Good to know that beneath the raw angry red scars the hope and ability to connect still lives within.  I dug deep with somebody and admitted just how much guilt, stress and pressure I live with on a daily basis– and I’m not even talking about the cancer itself.  I’m talking about what I put upon myself, as in “Eat this.  Don’t do that.  Feel this way.  Don’t say that.”  No wonder why I at times feel lost.  Those constraints and judgments of my own doing are actually making me feel separated from my true self.

“Stop,” she said (meaning stop putting this kind of guilt upon myself). We both paused and then laughed, as if it’s that easy.  And yet, in a way, for the first time maybe ever, I actually wondered if maybe it is just that simple.  She didn’t say it without compassion; in fact, she was right there with me, just the two of us in the room and I felt like I could say anything without judgement.

She had lots more nuggets of wisdom for me, treasures that I will tuck away for when I need them (perhaps every day). Sometimes we need to not just be reminded, but assured that we are OK.  We are grounded.  Here.  That what we carry– that boulder– doesn’t have to be carried anymore.  The cancer has to be carried, yes, at least for now.  But the guilt?  Maybe not.

It is the magical thinking that scares the crap out of me. “If I cut out soda, I can keep my cancer at bay.”  “If I limit my desserts, surely my cancer won’t grow.”  “If I keep positive, how can my cancer spread?”  “If I stay in-the-moment, nothing bad will happen.” In a way, I am learning, magical thinking can be a complete waste of time; it depends upon how you look at it.  The way that I’ve been utilizing it is more like a punishment:  Don’t feel too sorry for yourself, Sam, or something even worse will happen.  If you eat that piece of chocolate just make sure that you feel bad about it, somehow negating any negative consequences.  Don’t you dare ask the universe for anything other than to be alive. Here’s how I could be looking at it though:  Drinking green juice and meditating brings me peace, and I believe in my heart that I am doing all I can for myself and my health.  Whether or not that green juice or meditation will actually keep the cancer managed, while certainly giving me a better shot, is never a guarantee.

It’s about finding that peace within so that we can live the most joyful life possible.

So here’s where I struggle: I don’t truly believe that having dessert on my birthday will cause some kind of Armageddon in my body, but others say that sugar causes cancer to grow (how much exactly would I have to eat to have that happen?  I wish that somebody could just tell me the magical number and I would stay way, way (way), below it). So may studies and so many people have differing (but STRONG) opinions on the subject.  How can I listen to my own heart and gut when I’m hearing so many other voices in my head of what to do and what not to do?  And how can I truly enjoy that cheeseburger when I do decide to have it when all I’m thinking is, “I should not be eating this right now.”  Because somehow when I link food to joy and that food is not healthy, I immediately lose the joy.  In the most clinical and scientific words that I can find for this loss of happiness and this overload of guilt and stress, all I can say is:  It sucks.  Big time.

And then, let’s think about this: Have you ever noticed how many people tell you to “Stay positive” when you have cancer, or any serious chronic illness or disease?  You know how much I believe the mind and body are connected, but… Doesn’t that scare you into thinking that if you don’t stay positive 24/7, something bad (read: even worse) could happen?  I would add a clause to that statement, which is this:  “If you have days where you don’t feel positive, that’s OK, too.”  As in, a negative day or negative thought isn’t going to literally kill you.  Every second of every day of every year, yes that will impact your health, I do believe that; I truly believe in the power of positive thinking.  But just like eating an occasional cheeseburger, sometimes you need to allow yourself to have your occasional days where you don’t feel positive and you understand that thought isn’t going to literally eat you up inside.  You feel shitty.  You feel sorry for yourself.  You cry.  You’re irritable with your loved ones.  It ain’t pretty, but while everybody else gets to run the gamut of human emotions on a day to day basis, we should be able to as well.

All of this only reminds me that we only have one life, and I am making the choice to carry guilt, whether or not that’s been serving me well (and there are actually times when negative emotions can serve a purpose, believe it or not). For me, the guilt carries no positive connotation.  It makes me feel bad about myself. It makes me feel like the cancer is my fault.  It puts the ball in my court and not in an empowering way; it merely makes me feel deflated and defeated.

It’s about finding peace. I am beginning to understand that carrying around toxic feelings about my choices, my body, and spending time worrying about what other people must think of me when I eat that piece of cake is not peaceful.  It is anything but.  My best friend can attest to this:  She came to visit soon after my diagnosis and we ordered pizza.  Do I get cheese?  Do hormones from milk cause cancer to grow? Do I get sauce?  Doesn’t that have sugar in it?  I mean I can’t just eat a pile of dough, that’s not good either.  Will it be OK if I pile on the veggies?  The decision was pain-staking and probably very difficult to watch.  But this can certainty ring true for everybody, cancer or no cancer, yes?  Carrying guilt and feeling weighed down and begging to just let it go, somehow, some way.  Given how we as human beings are quite hard on ourselves and tend to lean towards quickly judging others, I would think so.  But as Buddha said, “You, yourself, as much as anybody in the entire universe, deserve your love and affection.”

I told a friend the other day that we have choices about what we can feel anxious about (let me add an * to that and say I’m not talking about huge life challenges like cancer or illness or grief or loss or trauma, etc. I’m talking about the day-to-day stuff); that we ourselves decide where to put our energy.  Judgment-free zone, I said.  And then I realized as soon as I said it that maybe I should take my own advice.  It’s not that easy.

But then again, maybe it is.

 

 

 

 

 

Trusting Myself

0

Courage

I had a dream the other night. I have two types of anxiety dreams: One where I’m about to go on stage in a play and I haven’t learned my lines (“Why didn’t I rehearse more?” I always scold myself) and the other where my legs are made of concrete.  This was of the concrete leg variety.  My wedding day had arrived and I had used some kind of a hair dye (which is hilarious and rule #1 about wedding days, right?  Don’t do anything new!) and the sides of my blonde hair were black and I had a huge bump on my head and in the middle of it all I asked my Mom, “Did we hire somebody to do our hair?” and we hadn’t and as I rushed back to my room (wherever we were) to take a shower and find some way to salvage what seemed to be the biggest problem in the world, all of a sudden I couldn’t move.  Well, that’s not entirely true, I could move, but so slowly it was like I was taking a month-long trip through a sea of molasses.  I was trying to get past chairs being set up where my guests were seated and there were bombs going off in the background (so easy to analyze that one, right?) and my legs just wouldn’t.move.  I hate these dreams, where I’m stuck in some kind of anxiety conundrum and then feel physically stuck in a jar of honey.  I woke up with sweat pouring down my back.

I wasn’t surprised to be having dreams riddled with anxiety, and I knew that my mind was working overtime trying to sort things out after my recent surgery.

A few days later out of the blue I wrote down this: “Something just clicked.  When I go back and retrace my steps and try to figure out what happened to give me this soulful “aha moment,” I have no idea how I got here (but then again I have no idea how I got here, either).  At some point I just realized that you have to step off of the ledge and see if you can fly; otherwise you risk the possibility of just standing there bearing witness as the world goes by, but no longer a part of it.  I imagined myself falling like Peter Brennan in the movie Forgetting Sarah Marshall, off that cliff in Hawaii, and getting stuck on the side of the rocks and realizing that if he didn’t propel himself away from the rocks just right he would hit his head and that would be it.  I hope that if I jump, a feather finds me.  I realized today that it’s about trusting the universe, trusting g-d, and maybe most importantly, trusting ourselves.”

Out for a walk the other day I burst into tears as I realized that’s not maybe it, that’s exactly it: OMG Sam.  Where have you been?

Almost every morning since my surgery 12 days ago, it’s been a chore to get out of bed in the morning. Sometimes it’s even taken me hours and sometimes I get out of bed, do one or two things, and then return to sleep.  Everything has just felt so hard; like my toothbrush weighs fifty pounds when I hold it, that kind of hard.  I just wondered what it was all for.

After my liver ablation surgery, after all of the positivity and love and prayers and support and comfort and wishes and soothing, I just hadn’t expected to hear my doctor say that they had gotten some of the cancer, but not all. That they had missed one lesion (because it is so small, that is a good thing) but that there were some new ones, too.  How could this be, I thought?  Hadn’t I meditated them away?  Where was the golden glowing light inside my body?  I felt certain that my doctor was going to get in there and tell me that he almost couldn’t do the surgery because the light was so blinding.  But then after a 3am MRI at the hospital (after vomiting from eating one bite of toast with jelly and carefully avoiding bandages every which way and being on pain meds and all of that other icky hospital stuff, including that awful Johnny that you wear and yes that goes on the list, it’s that awful!)–that’s not what he said.  More importantly than the anesthesia wearing off or not liking my outfit, another surgery was what he said.  He felt confident that he could still get them all.  And so did we.

But then I came home from the hospital, and I just felt as though I couldn’t (or didn’t want to) get out of bed.  When SHL would go to work my Mom would come over and I didn’t want her to see me like this (I don’t know why it’s OK to have our spouses or partners see us like this but not our parents), so I put on clothes and we went for walks.  I didn’t want my Mom to see me still in my pj’s at noon but part of me also felt determined as soon as I heard that I needed another surgery to get my body ready for the next one.  It was the first question that I had asked my nurse after the fellow left my room with the news:  How can I get my body prepared for the next one? I knew that I couldn’t fall back into nothingness; that now was not the time for Ben and Jerry’s and TV.  If it sounds confusing, that’s because it was:  I wanted to pull the covers over my head and sleep until the next surgery day arrived, and yet I also knew that in the long run that wouldn’t serve me well (a couple of days is OK, but we were starting to border on scary).   My therapist had to remind me that the “stability” (and I put that in quotes because it was as much stability as is possible while living with cancer) had been snatched away from me with these newest scans and treatment and I was dipping my toes so slowly into the water every day.  What could I manage?  And then when I’d had enough, back to bed I would go (retreating).  It all made so much more sense once she put it like that.

So we walked. And I drank green juice.  And I physically healed much quicker than I had expected.  But emotionally—well, emotionally, I was a landmine.  Step on me and be blasted to bits.  Irritable, angry, sad, scared, maybe joyful for a few moments here and there, and then back to wondering how I was going to get on with my life.  I was irrationally angry with everybody and it felt so good to complain to my Mom about all of the wrongdoings that had been done in the world and in my own life and how stupid people can be and I felt like I could have gone on forever complaining about everybody else.  She listened patiently, completely understanding that really, I was just aching and this is how it showed up.

Then on this walk by myself a few days ago, through those tears, I realized what it was that had been gnawing at me: I had lost faith.  Not just that, I had lost faith in myself.  It was as if after the surgery I blamed myself.  My body had failed me.  Or had I failed my body?  Either way, I didn’t feel brave or strong or any of the other things that people say when they try to uplift you.  I felt lost, not because I was crying or angry, I knew that was beyond normal.  No, it was more because I overlooked the fact that I had my own back.  I forgot that though I wouldn’t give up SHL or my parents or brother or family or friends for anything in the whole wide world, if you forget about yourself, if you lose trust in you, then there really is nothing left.  Not the love from the most important person in the world in your life can actually give you what it is that you sometimes need the most– that inner trust that you will never give up on yourself.  OK, you’re pissed. You can’t even find a word for just how you feel , but guess what? Anger can be mobilizing! (In the “fight” or “flight” scenario, sometimes we flee to the warm covers and sometimes we get mad at anything and everything.  Both are part of the authentic cancer journey, I think).  And just because you’re angry or upset doesn’t mean that the gratitude has vanished– you can actually have both at once (I had feared that my gratitude got lost in the hospital somewhere and was desperately searching for me, and perhaps that’s part of the reason why I went into a little cocoon.  Without that, who am I?).  It is only now that I understand that gratitude, hope and optimism live within me, at my core, but right now not at the surface.  Right now the emotions winning out are anger and fear.  Remember the movie Inside Out?  You can’t have joy without sadness.

I understand that this is tough for many in my life; lots of you are used to seeing Sam pretty cheery, optimistic, hopeful, and not sad, weepy, negative, scared or angry. But listen up my friends, because this is an important one:  This is my head space right now.  If you can bear witness to it and sit with me through it, that’s lovely and I honor you for being able to stand with me in this uncomfortable part of life.  If you can’t, that’s OK, too.  It would never diminish our love for each other and I won’t judge you for it, just like you have never judged me.  I know that you’ll be there when you can.  And just because I’m angry and scared doesn’t mean that I’ll end up here; it does not mean that I have given up. It’s just where I am today.

Through the haze of a life that seems to have turned upside down on me, I still think to myself: You’ve got this, Sam. Don’t abandon yourself when the chips are down. It’s what I realized I had been doing all week long, leaving myself in the dust. I had been meditating and drinking green juice and resting and taking walks outside (and yes, pulling the covers up over my head when I got too overwhelmed) but I was doing those things as if I was someone else, not in my own body, and frankly, not being very kind to myself mentally (there wasn’t a day that went by that I felt guilty about sleeping too much or not exercising enough).  I know that at the core of it so many things are going to help me keep fighting, but here was the one thing that I just couldn’t seem to remember up until now:  1) I trust myself. And whether you live with cancer or some other kind of trauma, pain, grief, or heck, just the ups and downs of life, remember this: The most important relationship that you’ll ever have in this lifetime is the one that you have with yourself.  The effort that you put in taking care of your partner, children, parents, friends, etc. is time equally as important spent on yourself.

I realize now that I’ve shed more tears these last two weeks than I have maybe all together since being diagnosed 2 + years ago. Something in me cracked wide open and I haven’t been able to shut it again, and perhaps I’m not supposed to, at least until I can hold onto the fact that we all need to trust in things.  I renew my faith in g-d, my faith in the universe, and mostly, in myself.  That is how I will put one foot in front of the other and keep going.