The Days Long Before Cancer

4

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

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

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

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

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

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

 

The Waves That Were Supposed to Be For Us

5

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.

An Itch You Can’t Scratch

1

People keep asking me if I feel guilty.  It brings tears to my eyes every time.  “I do a little bit,” is almost always my response, even after one doctor tells me that “I shouldn’t feel guilty about anything.”  If only it were that easy.

I know it must be heart-wrenching to watch this go on, especially for my husband, parents, brother + SIL, and closest friends and family.  Everybody must feel so helpless and this is my guess because it’s happening to me, and I feel so helpless.

I just spent 3 days in the hospital.  I bet you didn’t know that they’d admit you to to the hospital for something like restless leg syndrome (RLS), but if it’s uncomfortable enough that you’re sobbing in your PA’s office, they just may.  Did I want to be admitted?  Of course not.  But did I feel like I could go home and continue trying to manage it on my own?  No way.

The RLS made me feel like I was going out of my mind, like an uncontrollable itch that I just couldn’t scratch.  I’d had trouble sleeping for the past week and my eyes were popping open at 3am every single night.  Out of my mind, I couldn’t go back to sleep and I felt like I had to stretch my legs out every few seconds just to get any relief.  I started crying all the time. Between the lack of sleep and the uncomfortable legs, I started to feel like I was having trouble coping, and I was unable to function much even during the day, as my RLS never took a break (I’ve found out the hard way that you don’t just feel it always at night).

Three days in the hospital proved to be important and irritating all at once (going stir-crazy in my room for days),  but I may never have had better care than I did this time around at Mass General Hospital.  Everybody worked together– no politics or egos involved that I saw– including neurology, psychiatry, oncology, and the attending physicians.  The nurses were so sweet, all with kind eyes and souls like an angel, with a “Can I get you anything?” every single time they’d leave my room.  I wanted to cry they were so warm and caring. There were so many things to consider; low sodium so overnight IV, keeping my blood sugar stable, what medications would metabolize OK in my liver due to the melanoma, how much and how often to give these medications, what neurology thought could be causing the RLS (we still don’t know), the anxiety that this whole thing provoked, the depression from not having much of a life since my first CERT procedure back in April, my stomach hurting after I eat, the list went on and on.  If it wasn’t a finger-prick for blood sugar than it was an IV; if it wasn’t an IV than it was blood taken, if it wasn’t blood taken it was vitals, if it wasn’t vitals it was trying out more meds, and if it wasn’t trying out more meds it was a CAT Scan.  Thankfully each and every single doctor that came to see me consulted with all of the other departments and offered me the greatest compassionate care that I have probably ever received (the oncologist told me that I have been through enough and that I deserve “only the very best care”).

Last night was the first time in a week that my eyes didn’t pop open at 3am and that I didn’t have to take any kind of a medication to go back to sleep.  Hooray!  My body is still weak and fatigued (it feels like my muscles have atrophied) but I know that somehow, I’ll get my strength back.  (This is my positive self saying this, but I am scared that my body is “broken” and that I may never find my strength again).

As for now, I’m working on tweaking the medications with my doctors and creating a new sleep time routine (last night I turned off the TV at 8pm, worked on my “adult” coloring book, meditated, and didn’t look at any screens until I fell asleep at about 9:30pm).  Caffeine is out for now, so decaf will have to do.  My RLS is not gone completely and they warn me that there could be bumps in the road; it’s something that they still don’t know that much about, so it could flare up again.  All of the medications make me tired and give me stomach aches, so there is still a lot of chronic discomfort that I am dealing with.  But, I am working on it.

I thought that maybe this would be the “Summer of Sam,” but it’s already July 2nd and so far, I haven’t had much summer.  I long for cookouts and beach time, swimming and ice cream, seeing friends for iced coffee and pedicures, and yet, I have no energy to do any of this quite yet (at least as I write this).  In fact, it takes everything that I have to put words onto this blog page, and yet, it is the best catharsis that I know.

Cry, Rinse, Repeat

4

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

Me messy and complicated

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

If I was writing chapters, this one would be

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

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

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

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

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

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

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

A Good Day

3

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

A New Story

2

I deserve a new story.  We all do.

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

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

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

I’m listening.

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

G-d?  Is that you?

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

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

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

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

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

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

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

Pain.

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

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

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

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

Dear Universe:

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

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

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

Thank you Universe.

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

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

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

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

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

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

Feathers

 

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.