The Good Stuff

6

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

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.