The Real Me

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You may see me, but let me be honest:  It doesn’t feel like the real me that you are with. I don’t know who the “real me” is anymore, quite frankly.  It feels like I have broken off into different pieces, most of them scattered and broken and lost.

“Don’t isolate,” people tell me, but I have lost interest in most things. I know that a deep depression lies within me and that when I smile and laugh it feels real, but the next moment all I want to do is cry and pull the covers over my head.

My liver numbers are being monitored really closely because I guess they have been too high (I’m still trying to understand all of this medical jargon), and it is within the last few months that I have realized all of these great cancer treatments bring about such mean side-effects. I am so grateful for the treatments but I am also resentful of the residue that they leave behind… A half-eaten rotten apple with brown spots.  I am rotten.  (With brown spots).

The liver radiation that put me in bed and on the couch for months has worked, at least for the time being, so we try to live in that space of hope and gratitude. My liver looks stable in terms of the melanoma, but unfortunately the melanoma has also traveled to my stomach.  Thank g-d it doesn’t seem to be life-threatening at this point.  They tried to open up some of my bile ducts that had closed with the liver radiation, putting 3 stents inside of me, and they told me that I should take some Tylenol after the procedure and that I would be OK within a couple of days.  But we all know how that goes; a week later I was still on pain meds.  Tylenol?  F you doc for suggesting that this isn’t a big deal!  3 stents put inside my poor, aching body.  I went to the ER last week, feeling worse and worse, and they admitted me for 2 days, finding that I was probably having spasms in one of the pancreatic ducts, which was causing a lot of pain.  (This after taking blood and doing a CT scan and hooking me up to all kinds of monitors and giving me antibiotics in case it was an infection).  I’m so tired of hospitals.  And colonoscopies.  And endoscopies.  And biopsies.  And all things that end in “ies.”

I find out that I need to have another stent put in to replace the two small ones already there. A bigger one.  I think about how my body feels right now; like a scarecrow in the middle of a field where ravens come by to pick at it.  Little by little my body feels less like my own, and more like it belongs to cancer.

I don’t want this to become my reality.  Or has it already?

I try to take care of myself. I get massages and rest/nap/sleep and I’d love to exercise but my body is so, so tired.  The self-care, including meditation, keeps me just above the water.  Sometimes I feel like I could drown, but somehow something always lifts me up again.  Is it g-d?  The universe?  My family and friends?  I am so grateful that you will not let me sink beneath the waters.

Then I get the news that I’ve been nominated by Conquer Magazine for the Hero of the Hope Award. The Cancer Hope Network and the Jimmy Fund nominated me, and I am one of four finalists.  I even get to go to their conference in Orlando in November where they announce the winner, and better than that, the person gets $1,000 to go to any charity that they like!  Voting is now open!  I am blown away by this nomination and I am not saying this to be humble—I really, honestly, don’t understand how I’m a hero.  Especially now, when I feel like all I do is complain about not feeling well.  What kind of a hero is that?

I go to work—everybody says that’s good for me, gets my mind off of my health, I can help other people, socialize with my co-workers, etc. But there is major change going on at work with layoffs, people resigning and retiring, and integrating two EAP’s that my company just bought.  We have a whole new system to learn with just a few days until we go live.  I try so hard to concentrate; there are so many new things to learn.  I get calls about people who feel suicidal or whose family members have just died from cancer or train conductors who couldn’t stop the train in time and somebody was killed on the tracks.  Everybody is stressed and I’m not sure that I should really be there.

If I could, I would take some time off and not let anybody do anything to my body for months (unless it was life threatening). I would travel and visit friends and pretend like none of this is happening.  I would go to farmers markets and museums and shop and enjoy nature and maybe go to the beach somewhere.  I would get back into my book and write and sip awesome lattes because I am obsessed with coffee these days.  I would eat ice cream sundaes and sleep and not set an alarm.  I would forget about cancer and all of the cruel side-effects and I would pretend, just for a little bit, that I’m me.  The real me.  Not the broken version, but the put-together version who loves life and all it has to offer.

Since April:  4 part liver radiation.  Kidney stones.  Surgery.  Blood taken.  Colonoscopy.  Endoscopy.  Biopsy of liver tissue.  3 stents placed into my bile ducts.  5 hospitalizations.  Restless leg syndrome.  Melanoma now in my stomach.  Liver stable.  Lots of missed work.  Tons of sleep.  Guilt over not giving SHL a more normal life.

The sadness sweeps through me with a huge sigh and I do my best to tread water.

In between writing this post I go for a walk around my neighborhood.  It is a gorgeous day here in New England; warm and sunny and there’s something so still about the air, like it’s praying.

I haven’t been able to walk in weeks, so this feels like a real feat.  It takes me 30 minutes to walk what would usually take about 20, but that is OK, I tell myself.  I still did it.

I long for Kris Carr’s savvy advice, menu plans, and soul inspiring blogs.  Gabby Bernstein’s videos.  Miracles.  Talking to the universe.  Moving my body.  Finding joy in the things that I once did.  But I don’t reach out to Kris or Gabby or anybody.  Too many pieces floating.  Too much wreckage.  Not enough energy.  The sorrow takes me and breaks me apart and though I promise myself it won’t always be like this, because hope lives inside of me and always will, I forget the real me for a while and wonder what kind of a hero would let herself get this far down the river without a life jacket.

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Looking for Peace (And Pastries)

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Your assumptions are your windows on the world. Scrub them off every once in a while, or the light won’t come in.” — Alan Alda

I read.  I sleep.  I dream.  I live in a land where I used to be somebody else, but no more.

An old friend reaches out to tell me that’s OK; we’re always evolving.  Trying to stuff so much of my old baggage into the new suitcase is time consuming and “futile.”

Maybe she’s right.

Who am I now?  I do not know.  I suppose this is OK.  Your true self shows up when it is ready.  Perhaps mine is not ready.  Not yet.

A lot of us have trauma; too many.  Things that we’ve seen or experienced personally; dreams that attack us when we are awake, nightmares that try to crunch through our ear canals while we sleep.  If we let them, they can take away a lot.  Like our authenticity.  Our love of life.  Our humor.  If we let them.

My blood sugars remain high, though I am working with my endocrinologist on it, but still my head is fuzzy and when I’m asked to do something at work I pray that it’s something easy.  I know that I can’t handle much else, or at least without being made to feel like a fool (I’ve been here 6 years, some things by now should just come easily).

I’m careful when I drive.  I’m careful when I walk down the stairs.  The diabetes has once again thrown me off the edge of this cliff; the one where I stand with my toes curled underneath me, feeling the sand and the brush and the rough rocks just waiting for me below.

I try again and again to get out of here– to get some reprieve from work and the doctor’s appointments.  From the needle pricks and the blood and keeping count of pills (yesterday was 17) and numbers.  I do small things for myself here and there that are supposed to add to self-care like massages and lunch with friends.  I get enough sleep.  I snuggle with my kitties.  I went for a walk for the first time the other day in I don’t know how long.

It doesn’t work.  Not really. The writing and the sharing keeps me from becoming totally isolated, but life is boring.  Non-adventurous.  Just waiting for something to happen.  Something good.  I soaked myself in a meditation last night that reminded me that my beliefs navigate my world, not the way other way around.

Maybe I need to find the adventure, instead of waiting for it to find me.

I long to jump off of this medical merry-go-round that I seem to be stuck on.  It’s making me nauseous.

I have long, deep dreams about traveling.  Shaking off my day-to-day life responsibilities and going to the beach.  Don’t care if I need a sweatshirt.  Don’t really care where it is.  Just some sand, water, a blanket, and a book.

I long to put on my headphones and faze out the rest of the world.  I would jump on a plane and maybe go see the red rocks of Sedona.  Maybe squeeze myself into a crevice somewhere in a national park and watch the sun set without being afraid of seeing the dark.

Meditation reigns me in; it’s one of the few things these days that makes me feel still, like I’m not sliding right off the map.  But still, I search for far-away places:

Seattle and Vancouver could be lovely.  I could stay out with my friends who have neighborhood block parties and go sailing and we could get some good grub and pretend that none of this other stuff is happening, has happened.

I could go to Austin and swim in the rooftop pool at the South Congress hotel and finally drink a cocktail and find a good food truck covered with lights.  I could play w/ A’s kids in the driveway with chalk and soccer goals and forget about where I’m from, in that moment.

I could go down to Miami and help my friend M forget about the hurricane, the cleanup and the disaster that her city now is.  Instead we could go to the beach and rent bikes and eat Argentinian pastries on the boardwalk as the sun wakes up.  We could make green juices and go for walks.

I could go all over– to Europe to eat pastries and wander museums, to have afternoon tea with the Queen, to shop on the Champs Elyse, stopping at the Musee De l’Orangerie for my fix of Monet water lilies.  I could eat the best gelato in Florence and go visit my high school teacher in Arezzo.  I could go to Fiji and sit on my own private veranda and jump into that crystal clear water whenever I want to.  I could have somebody bring me drinks and pretend like I don’t have cancer.  Or stomach issues.  Or glaucoma.  Or diabetes.  Or massive fatigue.  Or overwhelming depression.

I want to dip my toes in 7 mile beach; my favorite, the Cayman Islands.  I want to float in that water forever, until the sun sets and you can’t see the little fishes swimming so carefully underneath you.

(So to recap:  Pastries and the beach are calling).

I want to feel carefree. I want to believe that it is possible to feel carefree again.

I want to chuck it all– just bring SHL and a backpack and pretend, just for a while, that I’m just a normal girl, living an adventurous life, one without regret, and one with much peace.

 

The World Spins Wildly On

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The water is so smooth as it travels from wave to sand, it covers my body like a kind of medicine that only I can see, feel, and attest to.  I linger in the blueness of mother nature and push my feet up as high as they will go, until I can see my bright blue sapphire toenails peeking up against the turquoise waves and my curly blonde hair surrounds me– turned back into a salty, wet, mess.  I love it, and  I long to stay here– right here– floating on my back, alone, watching the clouds turn into turtles and dragons and anything else that my mind wants them to be.  This is something that I can control.  It is as is nobody else exists, or more importantly, nothing else:  No doctor’s appointments.  No diagnoses or prognoses.  No scans or infusions, no phone calls or lab withdrawals.

My body hurts (mostly my stomach).  I put all my vacation eggs into one basket, counting down the days until SHL and I could ditch this popsicle stand and go rest our weary feet down in Bermuda.  10 days.  10 whole days to do nothing but swim and feel salty and play volleyball and kadima and golf and tennis and sleep and nap and eat and drink.

It wasn’t a total waste.  Despite the fact that I didn’t feel well, there were some times when I was able to make it to the beach or the pool, swimming, drinking cokes to settle my stomach and reading a good book.  I haven’t been a reader in a long time (I used to be a veracious reader and one summer in 2006 I read about 12 books, my claim to fame) but now with the deepest kinds of distractions I just can’t seem to get through a book anymore.  However on this vacation I finished a great one (My Grandmother Asked Me To Tell You She’s Sorry), cleaned up a 515 page total beach book called Truly, Madly, Guilty, and am now about half way done with Noah Hawley’s (FX Fargo series writer) NY Times bestseller Before the Fall.

For the first week of the vacation we weren’t even sure that we’d be able to stay.  I spoke to the on-call doctors and most agreed that my first infusion of Remicaide right before the vacation just wasn’t at a high enough dose to knock out any of this painful inflammation that has been plaguing me.  If things didn’t get any better, they said, I’d have to go to the local urgent care.  We don’t know if it’s the latest immunotherapy that is still wreaking havoc on my body, or what we found out after a recent endoscopy and colonoscopy, that the melanoma has now spread to my stomach.  Thank g-d the doctors don’t think that’s life threatening at the moment, but I’d still love to know how it got there.

Wouldn’t we all.

Ever since April I have been in some kind of pain– liver pain, stomach pain, massive fatigue, kidney stones, feelings of being full after I eat small portions.  It’s been downright nasty to see the world spinning on while I have to eat plain pasta and be stuck on the couch.  Positively unfair, one could say.

So Bermuda was supposed to be 10 days of romance, salt, sun and fun.  And though we did make the best out of it and we were able to stay the 10 days, it wasn’t exactly what we had in mind.  “Care-free” has not crossed our paths in a very long time, and I long for a life that I had remembered in those soft, colorful shapes that seemed to fill the cracks.

We used to go to Bermuda a lot on family vacations, so the pastel houses with white roofs and milk named after Dunkley and playing Rummy Q out on our balcony all brought back such sweet memories.  Now I was to make these memories for my husband, who had never been there.

There were many days when we didn’t get the full scope of sunshine, a day or two spent inside the hotel room looking at the ocean from the bed, and some days just dragging to figure out what to eat while everybody else was just positively dripping with ice cream.

Being home again, I can’t say that I really remember anymore what made me happy.  I know I am not my illness, (I am told this, but if I actually believe it is another thing entirely), but even as I begin to slowly start to feel better (as I wait for a biopsy of some liver tissue and get countless blood work and labs and infusions and scan results) I wonder:  Who am I?  What really makes me happy?  Will the same things that did a year ago now suffice?  I am scared that they may not.  I do not feel like the same person.  I do not remember what it feels like to be content.  I feel sluggish, discontent, lost, far away, and so, so tired.

Here is what I am grateful for, and it’s big:  The last liver scans shows stability.  My doctor says that he’ll take it, so will I then.  On Tuesday before getting my IV placed in for the biopsy my surgeon made sure to stop by to tell me that the had looked at the last scan as well and said that some things on the right side (which have had longer times to soak up the medicine) have even shrunk.  Thank you g-d!

So there is melanoma in the stomach.  There have been labs and more/other scans and biopsies and hours worth of infusions, but we cling to what we hear about the stability of the liver.  My #’s are rising which is why they need this tissue biopsy, and I can only hope and pray that things are OK.  That I am OK.  Because I don’t have much left in me to give right now.  I never did really recharge my batteries in Bermuda and now, I am on low once again.  My blood sugars super high from the steroids; the steroids saved my stomach but the high blood sugar makes me feel so foggy that I slammed into a curb the other day and gave myself one heck on a flat tire.

And I am scared, petrified really, that I may never be myself again.  Because I don’t even really remember who that girl was, let alone if I was to be her once more.

Dear readers– friends, family, social media family– please do not tell me that I will be myself again, and soon.  Please know, in that the deepest hours of the darkest thoughts, that nobody really knows what will be and for now, that will just have to be OK.

 

 

The Heist

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I know you’re not supposed to say things like this, (although every single cancer patient has probably thought it at one time or another), but cancer has taken over my life.

I know you’re not supposed to let that happen. I understand the benefits of a fighting spirit, of finding joy even through the (really) rough patches, of keeping your job so as to have a sense of normalcy (and health insurance).  I’m totally aware that cancer does not have to be 100% of your world; that it is possible to still laugh and love and work and travel and do things like go to the movies.

But there are times, I’m learning, when it just overtakes your life the way a tornado wrecks your community—it happens in the blink of an eye and everything that you’ve known is no longer there. For me it’s as if normalcy and joy were transported to somebody else’s neighborhood—they get more, you get less.

I’m being robbed.

You’re not supposed to say these things.

I shouldn’t put into words that there are some people who go through life charmed (I don’t mean no problems, I just mean relatively little trauma thus far).  Those of us who don’t go through life like that can’t help but to feel a twinge of pain, a fire squashed, a passion put aside, a difference between you and me.  In fact, the friends that I can often go the deepest with are those who have had serious trauma in their lives.  We’re linked in that cosmic, crappy way.

Cancer has taken over my life.

A heist.

For the past 4 months I have not felt well every day– at some point during the day–sometimes for longer periods and sometimes for shorter periods. Usually fatigue and stomach aches and nausea are at the top of the list, other times it’s itchy skin or restless legs.

It’s the cancer, it’s the side-effects, the symptoms, the whole host of issues that come along with trying to stay alive.  The immunotherapy, the surgeries, the medications.  I’ll take every single one of them to be able to live on this earth, despite how hard things may be.  (As long as I can talk authentically about the challenges of life right now).

This week I had to prep for an endoscopy and a colonoscopy. I was surprised that I didn’t cry at any part of the prep—even though people have colonoscopies every single day and it’s really not that big of a deal, after what I’ve been through the last few months, I feel fragile.  The thought of prepping for more tests, the vitals and the blood sugar checks and the IV and the sedation and the recovery and the waiting… I so wanted to cry.  I thought that I would feel a lot better if I could just let it all out.  I felt like Cameron Diaz in the movie The Holiday where she hasn’t cried since she was 15 years old, and she walks around the green hills of England trying her best to just squeeze out one stinkin’ tear.  Nothing (until the end of the movie).  I’m a crier, but these days things seem to have gone numb.

After drinking almost an entire jug (4 liters) of the most disgusting liquid one could ever create, and not eating for almost 48 hours, I finally went in for both procedures.  They told me that most likely I would just sleep through both and not even remember it, but unfortunately I could feel the tube in my throat for the upper endoscopy and I could feel the colonoscopy, crying out in pain and discomfort.  They kept telling me that they were giving me more medicine but that is what I remember.  Too much.

Now we wait for the results of biopsies, just as we did a few weeks ago waiting for the biopsy of the growth near my eye (thank g-d not skin cancer). Two liver radiation surgeries, one kidney stone surgery,  1 cat scan, ultrasounds, plenty of medications/new prescriptions, 4 hospital stays, and so many doctors’ appointments that I just can’t keep count any more, and how could cancer not take over my life?

And so, not feeling well physically has now seeped into my emotional capability to handle the physical problems. Coming home from work at 12:30pm or 1pm and sleeping the rest of the day away makes me feel lazy and guilty for not exercising or doing more.  Not having the energy to even make it out for a local dinner often times makes me feel wimpy and boring.  Lying on the couch unable to clean the house, file my paperwork, call my friends, do much writing, and trying to live with what has become chronic GI issues makes me feel like my life is not my own.  It feels chaotic, lost, sad, and doesn’t represent my love of life or who I really feel I am (or used to be?) at my core.

You may say, “It’ll get better,” or “You still are that person that you were and that you want to be,” but if I don’t feel it, it doesn’t make much difference (as much as I love you seeing the good in me).

The fighting spirit that lives inside of me is still there, she’s just a little bit more quiet than usual, and I can’t blame her for that (as long as she promises to never permanently leave me).  But I miss her, and her silence makes me seem to question everything else.  I spend a lot of time with my inner ally on that beach where we seem to meet asking her questions and searching for answers.  I haven’t gotten many yet, except that she consistently and compassionately reminds me that I am more than this (even when that feels so far from the truth), and that the heist will come to an end and I will feel more like myself as the healing continues.  She doesn’t tell me how all of this will happen, but she tells me to keep waiting… And that the answers will come.

The Good Stuff

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Over a cozy cup of coffee with a friend the other day, the rain coming down so hard we laughed at the absurdities of umbrellas at times like this, she asked me: How long did it take you to accept your life circumstances?

My answer: Sometimes I think I still haven’t totally accepted these circumstances, even after almost 4 years.

I thought a lot about her question and my answer that night, tossing and turning in bed, unable to get comfortable, my stomach churning (from the side-effects of all of my medications) every time I moved.

I think for the most part I have finally learned to accept that I will most likely spend the rest of my life living with cancer. But I’m pretty sure that there is still some small part of me that thinks I’ll wake up one day to have it all just be a nightmare.  Gone in the morning, just as most dreams are, unable to catch even a glimpse, how wonderful that would be.

It still seems so surreal when I write it down, think it, or even say it out loud.

The whole rest of my life.  Cancer.

What will that look like?

We know what it’s looked like so far, but no crystal ball can ever prepare us for what’s coming, good or bad.

I’ve been doing a free 21-day Deepak Chopra meditation these last few days on “Desire and Destiny.” The questions are poignant:  Who am I?  What do I want?  Things that we may think in passing but are rarely asked to muse on for longer than just a few minutes. One nugget that I’ve learned this last week is that there is more than enough abundance for all of us.  I had never really thought of abundance like this before.  I look on Facebook and see people dropping their kids off at camp or watch as they jet off on vacations of places where I want to go or watch them make more money than me or write a book (which I long to do, but don’t know how) and think:  That’s for others, not me.

Now this new concept is turning my world upside down: You mean, despite what is going on in other people’s lives or my own, there is more than enough fulfillment to go around?  I can have some too?  Even though I think of myself as a pretty joyful and grateful person, I still tend to think about what I have lost at times.  I know we all do, but I am learning that a big part of me, though grateful for all of my blessings, doesn’t feel comfortable asking for anything more.

But these meditations highlight not what I have lost, but what I have yet to gain. Just because I won’t have children doesn’t mean that my life can’t be so full it overflows.  Just because I have to work and can’t spend a whole summer traveling doesn’t mean that my life here has to be empty.  When I look for miracles, they do appear.  And likewise, when I focus on the negative, more negative seems to pop up everywhere I look.

And when I fixate on how much healthier I want to feel, I forget about all of other wants and needs in my life– or more likely, I feel that I have no right to ask for more than one good thing at a time.  Would it be greedy to ask for more?  Or does the universe want to give us as much of the good stuff as is possible?

So the goal isn’t to be fake, it isn’t to push my feelings down and walk away from the reality of a life lived with cancer, but it’s to turn things upside down and look for the good when you feel your lemons can’t be squeezed out enough to make lemonade.  It’s to look at things as full, instead of empty, and by doing so, to continue seeing the overflow of miracles and abundance, instead of the opposite.

I need to shake things up.  Because sometimes, I wonder why my well feels so empty and sometimes, I wonder how to fill it up again.

Be real. Be truthful.  Be open to abundance, and see what happens.  I’m trying it too, and I’ll let you know how it goes.

The Days Long Before Cancer

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

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

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

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

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

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

 

The Waves That Were Supposed to Be For Us

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

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

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

The fatigue creeps through my bones like a scary story.

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

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

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

An Itch You Can’t Scratch

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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

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

Me messy and complicated

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

If I was writing chapters, this one would be

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

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

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

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

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

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

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

A Good Day

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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