My So-Called Messy Life

Myrna Loy sitting photo

sigh.

My life is a mess.  My house is a mess, I am a mess.  Cancer is messing with my body. My thoughts mess with my mind.

Some days I just wanna wake up and like a Magic Eraser, have everything be perfect.  A clean house, life, body, love.  I do achieve these things on occasion, but then all the sudden things go horribly wrong.  Like that little kid who spills grape juice all over the white carpet.

Like I was loving my new job, then all the sudden, they weren’t loving me, it seemed I just couldn’t do anything right.  I truly do think cancer is messing with my mind and leaving me partially incapable of holding down a job and doing it well.  I used to be able to do that, now why am I not able?  My inability to function leaves me feeling messed up.

My checkbook is messy.  For the life me I can’t figure out how to balance it, maintain a positive sum or even save a damn bloody dime.  I used to rely on Nick to do that for me, and since he’s gone, so’s my account balance.

My lovelife is messy.  I have a boyfriend. He’s messy too, from being a slob to being mercurial and unpredictable, he’s inextricably in love with me.  I want out, he’s not the right person for me, in fact he often says that too me – we’re incompatible, we don’t communicate very well, our sex life sucks.  How am I supposed to feel when he says things like this to me?  He hates the fact that I can’t manage my finances; hey so don’t I, but like everything in my life, I just don’t seem capable of doing it. I want out but I can’t leave because I lost my job and lost the financial resources to be able to do so.  I tried last year, ran into the same problem and crawled back to him begging for forgiveness and we tried to rebuild our relationship.  For a while it worked, we cleaned up our messy details and things were better, tidier.  But then, like anything swept under the rug, the messy issues started to poke out again and I don’t feel like I can take this new (same) messy pile any more.

I ran into an ex-boyfriend who’s got his own messy life to deal with and is grappling with major life decisions.  Me too, I have to figure out what I need to do next and try to clean up my act.  But what he doesn’t know is that I still love him, maybe not in the true, all-encompassing l-word way, but I care for him deeply and want to see him happy.  Do I wish he’d see the good in me and want to take things to another level – sure.  But like I said, I’m a mess, so why would he want to be involved with me? And now that I’ve written this, he’ll probably get out the can of Raid and aim toward me.

I still have cancer; it’s never going to go away.  Right now it’s neat and tidy, all contained in one little spot, its previous invasions to my bones and lymph nodes seem to have been cleaned up thanks to the Scrubbing Bubbles of Adramycin.  But I know, like everything in my life, it’ll return someday as a bigger mess.

All of these issues mess with my mind.  What’s worse is that right now I am off my antidepressant because I ran out and my insurance company won’t let me have the dose my doctor wrote the scrip for and so it has to be appealed; but it’s moot now because I no longer have that insurance since I lost my job.  What a freaking mess.  Can I just have my drugs please??  I got new insurance through the healthcare marketplace at nearly $300 bucks a month; money I don’t really have, but I need the insurance more.  I just hope my docs take it.

I have a cat who’s a mess.  She old, blind and has stopped taking care of herself.  I often feel like her.  I’m lucky I can get out of bed, take a shower and get dressed these days.  Makeup?  Bra?  Ha, why bother?  She can’t seem to find the litter box anymore so she’s making a mess of the house which also adds to the mess of my relationship status.  He’s getting awful tired of cleaning up cat pee.  So am I. I need to let her go, it’s time, but it messes up my heart.  I can’t bear to say goodbye to this sweet little soul who’s been by my side through a good part of my messy life.  But it’s not fair of me to make her suffer either.

How does one clean up the messes life throws your way? In this case, Bounty’s not gonna work. Sure, get that Swiffer out and start sweeping up a little at a time, but don’t make sweeping changes all at once.  You’ve got to start at the corners and work inward, til you get to the center of it all and finally pick up that pile of dirt.  So, which corner do I start? Maybe I should start with what I can change, my attitude.

Where’s Mr. Clean when you need him?

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Filed under cancer, challenge, changes, Love

My Old School

trunksI went to find something in my old college crate today.  The crate was something I acquired nearly 30 years ago.  It was a simple, handmade wooden steamship crate with rope handles that got me back and forth to school and held all my treasured possessions.  Thirty years later it’s still in remarkably good shape and it still holds my treasured possessions.  It’s kind of like a Pandora’s Box, I’m not really sure what’s at the bottom any more so I haven’t yet dug down all the way to see what’s hidden in the depths. Maybe Hope’s still lurking there.When I opened the crate today I gasped.  It was a jumbled mess.  What had been so carefully laid to rest was in a musty heap.  Then I remembered.  It had been out in the hallway of his house, and one night he stubbed his toe on it and to retaliate against an inanimate object, he kicked it over sending the contents tumbling helter-skelter. Looking at it now, I wanted to cry out of anguish and anger. I have never reordered it because it was too painful to want to go back and make sense of it all.

My life is kinda like that, jumbled and messy.  Full of memory; looking for Hope.  I do retain some Hope in the form of the fact that my cancer scans keep saying I’m still with NED, but now I’m also dating the Stable Boy, i.e. my scans are holding steady, nothing new to report.  I stopped taking Ibrance because it was ruining my digestive track so the only thing that stands between me and cancer these days is one tiny hormone blocker pill.  Pretty remarkable, eh?  Especially since I keep reading how many seemingly stable metsers are suddenly dying very quickly.  It makes me very sad and angry and scared.  I don’t want to be that person just yet.

I went back to my old college crate to try and find a piece of myself that I’d stashed away.  Some former vestige of myself, the person Before Cancer.  It’s in there somewhere along with scores of old, old family photographs that were my grandmother’s.  Pictures of her and my grandfather as raccoon-coated Cornell students, baby pictures of my Dad, old photos of all the foster babies my mother had cared for. There things I’d squirreled away, high school photos, my varsity jacket, high school and college mortarboards.  Buried in the bottom are also all the cards and love letters from Nick.  I couldn’t bear to just throw them away; it would seem emblematic of the trashing of what we’d once shared.  Down in the bottom too, are love letters from high school boyfriends; why I saved them I don’t know, I guess I’m just a sentimental fool.  I can’t bear to read through them thinking of young silly love that seemed so mature at the time, and how hurt I was when the relationships ended.  Back then, it seemed like the world had ended, but now I think how much those relationships shaped me and I think that’s why I kept those letters, to remind me of who I am and how far I’ve come.

I just spent a fantastic weekend on Cape Cod with some of my oldest friends.  Ten of my college friends all met in Chatham and stayed for the weekend in a lovely home where we could catch up, stay up late, reminisce and laugh.  These women are my friends for life and I am so grateful for their love and support.  As one of my friends said, we are all strong, beautiful women because of each other. They’re still as strong and sturdy as my old college crate.  Chatham is my happy place; I can touch the ocean, hear the gulls and look back fondly on special things that happened there, like my wedding. I cherish the times there, old and new.

I recently connected with another bit of my past; one of the boys who sent me those old love letters.  He’s grown up now, with a family all his own.  Like me, he’d married his college sweetheart and built a life with her only to have it end in divorce.  The good thing is that he too remains close friends with her, like I do with Nick.  He’s got kids to think of, we only had cats.  I vividly remember our relationship; he was my first real boyfriend and my first true love.  He took me to my first rock concert, the Police.  Our love song was “Wrapped Around Your Finger,” and we’d even exchanged rings.  He went to a different school, so I felt special wearing his varsity jacket.  He was a great writer and always sent me handwritten notes, and I faithfully wrote back. Since he was a senior, he gave me a promise ring before he went off to military school.  I still have that delicate gold ring.  I cherish it actually. Then, as stupid young girls are wont to do, I broke his heart.  I met another boy while he was away and dumped him cold.  Over the years, I’ve come to realize I’d probably let a good one get away, he was open, honest and sweet and I didn’t realize how good I’d once had it until I met Nick.

Yet here he was, reaching out to me, to say hi, to catch up; and I was scared.  Here was someone I hadn’t seen in more than 30 years and I was nowhere near the skinny, braces-glasses-80s-perm girl I once was.  We had a long conversation on the phone one day, and it was wonderful.  Turns out, he and I share a lot of the same interests and passions.  It warmed my heart.  We then met for dinner and I almost dropped my martini when he came in.  Of course he’s the same good-looking guy I remembered, just a little older and wiser.  Time has given him soft crinkles around those baby blues and my heart fluttered when he smiled. Time melted away as we talked, and I felt a little envious of the man he’d become and the woman he’d married.  As Jana Kramer sang, “I got the boy, and she got the man.”  I felt so inadequate.

We met for another dinner one night and talked more. Turns out he’d had his heart broken again in another relationship, and this time he may not get over it.  That breaks mine, how could someone do this to such a nice guy?  I almost want to hate this unknown woman.  I want him to be happy, not broken like me.

Nick shattered my heart and I don’t think I’ll ever get over it. My body is broken from cancer and I’m unhappy with the state of my life.  I’m unhappy with the relationship I’m in; I know he’s not the right one and yet I feel paralyzed to do something about it.  It’s comfortable, it’s easy and simple.  But that’s not what I want.  I long for more. I want deep, meaningful conversation, traveling, wine, music and mellowness by a crackling fire on a long winter’s night. I lost a piece of me when I lost Nick, and I want it back.  I don’t feel like I’ve been able to be myself, to be the real person I am; I’ve always felt guarded and misunderstood. Have I ever really opened my heart and let him in?  Maybe I haven’t, because I don’t want it shattered like what happened to my old flame. Yes, he says he loves me for all my fatness and sickness and accepts me for it.  But I don’t really believe him because sometimes his hidden anger comes through, and he’s mean and nasty and says hurtful things to me.  How do I let myself continue to live like this?  Again, it’s because I don’t have the strength to lift my broken wings.  He says I’m the girl with far away eyes, and I guess I am.

But I’m also the girl with Hope lurking in her old college chest; I just have to find her and let her out.

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Filed under cancer, death, family, Long Weekend, Love, simplicity, spring

Reflections from a Snow-Covered Hill

I took my love and I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down. 
Landslide, Fleetwood Mac

So Snowzilla has stomped away leaving behind so much snow, D.C. looks to be paralyzed for a few days.  It’s prompted me to sit back and ponder both the past and present.  I posted some oldies but goodies photos on Facebook of friends and events nearly 30 years ago.  It’s hard to believe that I’m 48, just two steps away from 50.  How the Hell did I get here?  It’s been a journey all right. While sometimes I struggle with the thought that I’ve not amounted to much, I can see in my photos, Facebook posts and looking at the lines on my face, I guess I have gotten somewhere.  It’s been joyful, tearful, easy and difficult.  I’ve gained and lost friends and family and I wouldn’t trade any of them for the world.  They are everything to me.

I have3273148n’t written in a while because I wanted to step back and reflect on things.  Sure, I was all gung-ho to participate in the October Metastatic Breast Cancer Awareness activities and raise my voice loud so that people hear our plea:  Stage IV Needs More.  Sure, I still rant on FB about the injustices that women facing breast cancer go through.  It’s gotten rather ugly at times and that makes me very sad.  Why are we fighting about the issue we’re trying to raise awareness about?

My life has also been a bit tumultuous.  I had a job, left it; took another, got fired (thank God); was unemployed (with no health insurance) for three months and then finally landed at a job that I love and makes me feel wanted and productive. I nearly left my boyfriend, but we worked things out and I can honestly say things are better than ever; we finally are communicating and understanding one another better.  Sometimes you need to take a step back and look at your reflection.

That’s why I’ve been quiet; I wanted to take time for myself.  I am feeling really good right now, my cancer seems to be under control.  I have scans next week, so we’ll see if the scans agree with my feelings.  I wanted to enjoy the life I have now for ever how long I’ve got.

As I turned 48, a couple of things struck me. I am the same age my mother was when she died from cancer, and that was 40 years ago.  I am going to outlive my mother; how sobering.  I’ve watched a lot of women younger than me suddenly pass away from cancer, Holly Kitchen most especially comes to mind; she leaves behind two little boys. How did I get so “lucky” to still be here and she’s not.  Life (cancer) is a roulette wheel; you never know where you’re gonna land.

I’m grateful for little things, like having hair again.  I was able to retire my wig over the summer.  It’s very curly, thank you chemotherapy.  Since I was a child of the 80s, I used to endure perms to get my hair this curly.  Who knew cancer could provide it for me at the price of an infusion. I’m waiting as long as I can to see my hairdresser, but my hair is starting to grow like a femmullet, so I may have to break down and go see her so I can tame the unruliness.

My chemofog seems to be going away too, which is helpful on the job.  I’m finding I can concentrate better and feel more focused.  Thankfully too, I’m not as dog-tired as I used to be.

I can actually say that the only thing menopause has gifted me with is dry skin.  As a person with formally oily skin;  I’m pleased.  My face requires very little maintenance these days and I can go out without heavy makeup.

The oral chemo seems to be working so far.  My tumor has shrunk and my oncologist said that the redness and swelling seems to be gone too.  Hey, I may actually have same-sized boobs again, not the freaky grapefruit on one side and normal boobage on the other.  I only hope that it continues to work, so many people have said that all the sudden, drugs stop working and the next thing you know, you’re starting down your demise. That scares me to death.

I am glad to be a part of a network of women dealing with breast cancer on Facebook.  It’s been informative, supportive and sometimes heartbreaking. There are amazing women out there and many of them are strong advocates for the cause of research, education and funding. I cheer them on and am proud to be a friend.

Sure, I could be and have been like them, but right now, I’m standing back letting others take the charge.  Some could say I’m copping out, giving up; bur I’m not really.  I’m just looking at my reflection on the snow covered hill and appreciating all I’ve got before the landslide of death takes me down.

It’s cold and snowy, so I’m going to leave you with a warming drink.

Reflection:

  • 1 shot bourbon
  • 1 shot Bluecoat Wood-aged gin
  • ½ shot Allspice dram

Muddle a cherry (preferably bourbon soaked) in the bottom of your shaker, then add ice and all your liquor.  Shake well and pour in an old-fashion glass.  Add cherry or bourbon-based bitters and garnish with another cherry and an orange slice.

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Filed under cancer, challenge, death, Love, simplicity, Washington

Coming to Terms

Thin Man Nose Scrunch  I am a fat woman.  There, I said it.  It’s something I have to come to term with.  I am fat; actually morbidly obese, if you go by the BMI index, my height and weight send me there.  Yay.  So I’ve got that going for me, in addition to cancer.

There are those out there who say cancer is a direct cause of my weight; that it feeds on the excess estrogen and cortisol my body produces.  There are those that say that if I lost weight, my cancer odds would go down, even be cured.  I do know I’d feel a lot better about myself if I lost this weight.

I have tried Weight Watchers twice with varied success, a doctor supervised very low calorie diet and on my own too.  None seem to have sticking power.  I lose then regain, that familiar cycle we all know so well. I know how I gained weight.  Thanks to surgeries that put me on crutches and drugs that fine-tuned my psyche, I put on the pounds.  After my affair, I hid behind food, feeling that if I were less svelte I wouldn’t be noticed anymore.  That food could get me back into my husband’s heart, that it would give me solace.  When I got divorced, food gave me moral support, a means to make myself feel better when people couldn’t.

I love to cook, I love to eat.  I love to drink.  It’s hard when you have a new man in your life and you want to make him happy; to impress him; to love you for what you put on the table before him.  I am more worried about him being happy with his meal than my own. He’s a meat and potatoes kind of guy, so vegetables and fish can be a challenge.  Fortunately, he loves to cook so we have a lot of fun in the kitchen cooking meals together.  That’s a trap too I guess, cooking meals that are mutually satisfying, and we all know that love involves cream, butter, eggs, indulgences that are just as good as what’s between the sheets.

Cancer forces you to come to terms with things too.  You’re forced to realize your own vulnerability, your own mortality.  Sometimes it can make you angry, or sad simply glad to be alive. It can also make you hungry.  People often wrongly joke “oh now you can lose weight” thanks to the “Chemo Diet.”  I’m sorry to say that chemo didn’t affect my appetite.  The docs loaded me up with so much anti-nausea drugs that it didn’t phase me.  On top of that, they added steroids to help ease pain.  So instead of not wanting to eat, I wanted to eat everything in sight.  I’m also one of those people who when thanks to the altered taste in my mouth (another side effect of chemo), I want to keep eating to try and get rid of the taste…

Many people with cancer change their diet in an effort to combat their disease.  I haven’t changed mine, nor do I intend to.  During the summer I enjoy hitting up the local farm stands and buying tons of beautiful produce.  I spend my Sundays often cooking great meals with the harvest I’ve gathered and there’s nothing more enjoyable than sitting down to a meal filled with colorful fruits and veggies and meat hot off the grill.  Oh and a glass of French rosè in my hand as well.

Being fat still lurks in the back of my mind. Especially when I put on clothes.  Suddenly thing that weren’t tight shrank in my closet overnight.  It’s a struggle to find flattering work clothes.  Why do many clothing makers seem to think that every fat girl wants sleeveless tops or ones that fall to their knees?  I’m short; I don’t want to hide behind an overly large top.  Or they assume that larger sizes mean taller people, again, I’m short, while the waist may fit great, I have to take the pants up a couple of inches.  And often the clothes are just downright ugly. Not every fat girl wants to wear bright colors and sequins.  Thank god for Modcloth; I can’t tell you how many awesomely cool outfits for fat girls I’ve found there.

Being fat limits your mobility and makes you tired.  Just like cancer.  The two combined makes things all that much more difficult.  Exercise is great for both, but when you’re just too tired and worn down, how can you find the energy to get out and walk? Plus it hurts; bone mets makes everything painful.  I know I can find every excuse in the book to not get up and exercise and I’m very good at being self-defeating.  Something else I need to work on.

The cancer and obesity link is being studied, which is a good thing.  Unfortunately, the studies want people who are Stage I-III, not Stage IV which is too bad because Stage IV needs more research and people at this point in their cancer life are living longer and therefore deserve more studies.

I feel happy and embarrassed that Hunny loves me just the way I am.  While it’s reassuring, it’s hard to hear him say “I love all those extra rolls, fat girls are sexy.”  He’s referring to me, and I hate hearing someone else, even him, call me fat.  It’s a hurtful word and I know many women struggle with this term.  Fat-shaming has become a hot topic online and there’s a movement afoot to blunt it. But what do you do when you’re fat shaming yourself?  Body acceptance is hard for me, when I look at my face in the mirror, I don’t see the fat girl, but when I see my whole body, I realize that I really am fat and I look away.  I don’t like to see reality.  It was hard to look at myself in the mirror when I lost all my hair from chemo, I felt like it was a surreal alternate place and that I wasn’t really going through all that hell.  That’s why I wore the wig, and still do, I want to feel a semblance of myself before I got cancer, I want to feel “normal.”  The wig’s a shield from the truth.  Kind of like billowy clothes when you’re fat.

I’m at a new chapter with cancer now.  I’m on a new drug that seems to have cancer at bay for now and I feel better, I really do. People have even been telling me I look better. Guess I never realized I looked bad.  Huh.  So, I have a new lease on life and I should do something about the rest of my health.  First thing I need to examine is the how and why and what to do about how I feel about myself.  Admitting you have a problem is the first step…

So, I’m Norah and I’m fat.

But since I can’t leave well enough alone, I’m going to give you a cocktail to drown your sorrows, and rejoice because it makes use of summer’s gloriously, fresh and juicy blackberries!

Drown Your Sorrows

  • 2 shots vodka
  • 1 shot crème de violette
  • 14-1/2 shot simple syrup (depends on how sweet your berries are or how sweet you like your drink)
  • 2-3 ripe blackberries
  • Lavender bitters

Muddle everything save for the bitters in a cocktail shaker filled with ice and pour into a chilled martini glass.  Garnish with a fresh blackberry and add bitters to taste.

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Filed under cancer, changes, drinking, food

Fifteen Amazing Things About Me

death

the tombstone of Nathaniel Mather in Salem, Mass. I plan to have this tattooed over my left (cancer) breast.

Ok so, this post is in response to a challenge posted by Nancy’s Point.  We want everyone who is facing cancer to get the word out that we’re more than just our cancer diagnosis; we are real people, living amazing lives.  So betcha didn’t know these things about me:

1. My maiden name is Stoughton, I am a descendant of the 17th-century Stoughtons who came to Massachusetts from England. My ancestors include a judge on the Salem Witch Trials and the first governor of Massachusetts.  There are towns named Stoughton in Wisconsin, Massachusetts and Manitoba, Canada.  I was married to a descendant of Cotton Mather, the famous Salem Witch Trial minister.  Our ancestors knew one another, and their families had married once before! My ex-husband and I always joked that we were cursed by those witches we condemned.

2. I played oboe for about four months. My Dad thanked me when I quit.  But I played clarinet for 5 years.

3. I am mathematically challenged. While I was in Honors classes for everything else, I was in remedial math.

4. I am an only child, my parents adopted me at birth. But I came into a family that has many wonderful step-siblings.  So, I am the youngest of one set, and the oldest of another.

5. I was a Girl Scout camp counselor.

6. I got a varsity letter in marching band.

7. I had oral facial reconstruction surgery my senior year in high school, my jaws were wired shut for 8 weeks, I got them unwired just before senior prom. Steak never tasted so good.

8. I can’t drive a stick shift.

9. I thought seriously about becoming a chef.  I love to cook, but hate to bake.

10. I can use a manual snow blower. Hey – I grew up in the Snow Capitol of the country!

11. I am extremely introverted. I really was a geek in high school. I guess I still am a geek.

12. I can’t speak a foreign language, I took 5 years of Latin.

13. I love gardening. I’m not very good at it.

14. I love wine. A lot.

15.  I know how to and have brewed beer.  Relax and have a homebrew!

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Pandora’s Paradox

gifts

I recently went back to Myrtle Beach to participate in my niece’s Relay for Life event.  I felt it was important to be there to support her; it wasn’t about me.  But yet, when you have cancer and are a participant in the event, suddenly you are honored and loved for being a Survivor.  You get a fancy sash and parade around the track like a pageant queen accepting flowers from adoring fans.  I felt like such a fraud.  Am I really a survivor since I’m living with metastatic cancer?  I’m not really going to survive, it’s going to kill me eventually.

Survivor is a loaded term in the cancer world.  Some people hate the label, some embrace it.  As for me, I use the word only to describe those who have truly beaten the disease, those that will never see another cancer cell in their lifetime.  They are the lucky ones.  The term fighter is also bandied about like we’re at war with our bodies.  To a certain extent we are; this disease invades our cells and sets up a bunker that’s hard to breach.  We send in an army of treatments and sometimes it breaches the bunker and sometimes it doesn’t.  So if my current arsenal fails am I defeated by the enemy?  No, I am just another foot soldier carrying the banner of disease.  When I die I’ll be labeled as someone who lost the battle.  That seems to be a misnomer too, I didn’t want to fight, I am a pacifist by nature.  I don’t want it to sound like I went down in defeat.  I’m winning by simply accepting my disease and living life to the fullest despite it.

Any chance I get to live life at the fullest, I’ll take.  I went back to my old school (thank you Walter and Donald) for my – gasp – 25th college reunion.  It was a weekend where I could see old friends and cheer on my classmate who received an Honorary Doctorate and who was the keynote speaker.  She is a dear friend who is living life to the fullest, traveling around the world to deliver aid and comfort to those who need it most.  She sees a lot of pain and sadness in her job, and I know it haunts her, but her courage is endless.  In her speech, she encouraged graduates to believe they can and will change the world for the better and to never lose empathy.  It’s a profound statement – if you have care, compassion and hope, you can live life to the fullest.  Even if you have nothing else, like those refugees who pour into the relief camps where my friend visits.

Cancer takes everything from you, your dignity, your health, your spirit, your hair. It leaves you with nothing.  But if you are armed with care, compassion and hope, you are a survivor.  Deep down inside these things live, like the tiny flame that Pandora found when she opened the box and let all the world’s evils out.  Cancer is like that, a Pandora’s Box of feelings and emotions that can make you angry, sad and glad for what you have left.

I relished that weekend. I could forget that I had cancer for once and remember why I loved being a part of my college.  Most importantly, seeing the friends who still love me and support me even if they’re not right by my side. Nick was a part of my college life too.  We were so young when we met and coming back, it felt like we were still that innocent age.  Now, we were two old friends who were comfortable together, even after we’ve gone our separate ways.  In her speech, my friend said, “we are sometimes gifted with people who come into our lives and see things in us that we don’t recognize in ourselves.”  Nick is one of those people; he sees and reinforces my strength, even when it gets lost in my feelings of self-doubt and fear.

I’m placing hope in medicine right now and gaining strength through understanding my disease and my body.  I am grateful to be on a new drug called Ibrance that’s supposed to double the life expectancy of people with metastatic breast cancer like me.  I had to fight to get it though.  Insurance companies are another one who put up bulwarks that need to be surmounted by your will to live. How can one survive when the people who are supposed to be helping you throw out obstacles?  Sick patients shouldn’t have to worry about whether or not they can afford groceries or their medicines; they should be able to have both. I am grateful for insurance covering the vast majority of my care and I feel infinitely sorry for those who don’t have that luxury. Are they surviving?  Barely.

I have survivor’s guilt.  I see way too many women dying so young from metastatic breast cancer, it saddens me. They were busy trying to live their lives to the fullest when suddenly it was cut short. It angers me too that most folks don’t know enough about metastatic cancer; that it’s the real indiscriminate killer.  There’s no cure, there’s little hope and little funding toward its research.  It scares me that even women who have this disease don’t know enough about it.  I was diagnosed with it right from the beginning of my cancer dance, so I educated myself and learned every move I could.  I can only hope that one day I’ll be able to enjoy a dance with NED (no evidence of disease) but for now, I’ll be content to stand against the wall hoping my cancer doesn’t soon want a dance with death.

I’m thriving because I have the love and compassion of others around me.  While I wore the Survivor’s sash at Relay for Life, Hunny wore the Caregiver sash, walking by my side, holding my hand and giving me courage to continue.  I wished I could give that sash to more folks, because I have so many people who truly care for me and nurture my soul. They’re the reason I survive.  And despite my terminal prognosis, I know I’ll continue to live in people’s hearts and minds because they’ll never lose their care, compassion and empathy.

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Filed under cancer, changes, Love

The Vines of Love Run Deep

the-thin-man_5092How do you measure a love that’s lasted for 27 years? A love that’s blossomed, grown, wilted, but never really died.  It’s like the old twisty, rooty wisteria that Nick and I used to battle.  It had been long neglected, continuing to grow, overtaking the yard, and no matter what we did to eradicate it, it still puts on a lovely show of delicate purple chains in the Spring.  I think our love is like that too, it’s still there; we have deep roots, despite all we’ve been through, it remains strong.

We were just kids when we first met, I was barely 20, he was barely 19.  He spent many days and nights with me at school, enough so that he became the “token male” in our all-women graduating class.  I remember the long nights where he’d be asleep as I burned the midnight oil writing papers.  He was the first person I called when I was in a pre-exam panic.  He was my editor and reality checker.  Sometimes I wondered how I would have gotten through school if he weren’t along for the ride.

After we got out of school we struck out on our own.  My Dad went so far as to pronounce us married since we would be living together.  We landed in Richmond like two Yankees out of water and spent a tough year there.  We tested the vow of for richer and for poorer; we were so broke our only entertainment was to sit out on our tiny deck with a jug full of cheap wine and a big bowl of popcorn watching the antics of our neighbors.  Nick managed to find work down there and I packed his lunch every day, sticking little love notes inside.  He saved all those notes; every sweet little scrap of paper.

Life was not without its challenges and arguments.  We were growing up as well as growing together.  Once, Nick wanted to discover himself and see what life was like on his own, so we split up for a while.  Turns out we couldn’t totally part ways, we bought matching china and sheets so when we inevitably got back together, everything matched.

We got married.  It’s funny, once we settled on the next phase in our life, the arguments grew less, as if a storm had suddenly been calmed by finding port in each other’s souls.  We threw a party, not a wedding, celebrating the next chapter in our lives with those who we loved very much.

Later, it was my turn to try and find myself, but I went about it the wrong way.  I found myself involved with a man who I though was giving me what I didn’t have in my marriage, validation as a sexual being.  It was lusty and stupid and hurt the only person I loved with all my heart.  I was reckless and dangerous during that turbulent time.  I tried to kill myself twice, believing that dying would be the only way to make things better.  We made it through, battered and torn, but mended.

Then I got sick, testing the next part of our vows, in sickness and in health.  There was a period of four or five years where I was constantly in and out of the hospital for various health reason.  Being institutionalized was especially hard. Nick stayed by my side, arguing with my father that the medicines and therapies were helping.  He was my champion and my advocate, fighting for us when I couldn’t. During Art Therapy I was asked to draw circles representing how I saw my world, the closest circle being what mattered most.  I drew Nick as the closest circle.

The last straw came when I was healing from my brain lesion.  It was a long, hard recovery and I was completely dependent on Nick for everything.  I took him for granted, treating him more like a servant than a husband and I suppose that’s how he felt, he lost his identity.  Suddenly, he spoke up for himself for the first time in his life. He threw off the mantle of caretaker and stepped up.  It was brave, scary and eye-opening, but he did it.

Nick realized that in order to find himself, he had to do it without me.  Our identities had become so entwined it was hard to separate ourselves, much like those twisted vines in our yard.  I had always been happy being Mrs. Hall, the wife who followed two steps behind her husband. I no longer knew who I was, preferring instead to let him create me. I thought I knew Nick very well, and yet I didn’t.  He’s surprised me lately, becoming a strong, independent man capable of things I never knew.  I wonder what could have been had shown me that side.

Yet Nick was still a caretaker; most notably for a father who deserved it the least.  I know, I saw and heard how evil he was to his son, his daughters.  Being a repentant former abusive drunk won’t get his Dad any brownie points in Heaven, but at least it made Nick feel better about himself.  I give him credit; he took on the mantel of responsibility all by himself, something he struggled with for his mother and against sisters who did very little.  It shows Nick’s inner strength to forgive someone who cut him to the very core.

Cancer has altered my whole perspective on life and what matters to me. When we divorced, we sought peace and happiness for each other, something all the money and property in the world can’t buy. Our divorce wasn’t bitter and acrimonious, it was sad; another chapter in our life closing. I hate it when people tell me now I can find “the new normal” after getting divorced; that it’s a great opportunity to figure out who I am and what I want out of life.  I thought I knew that before I got divorced, I thought I had the life I wanted, but it was at the cost of someone else.  Then along came cancer, how do I go about trying to factor in the grim statistics on death and dying while I’m still trying to figure out the rest of my life.  It’s not fair, I felt like I was about to get there.

Nick and I started a new chapter as friends.  It’s something we’ve always been and I think it’ll be something that will always be there.  We can talk to each other and be brutally honest.  He’s still the first person I talk to about my cancer treatments and the first person I cry to when things are tough.  I am scared to die, I can’t imagine doing it without Nick by my side.  I wanted my last memory to be his face smiling at me, offering me the peace that I never got in life.

I have a new love, but there is a wall between us.  Nick was the only person who could break through that wall; the only person I truly fully and openly trusted.  I gave him my soul.  He gave me his and trusted me truly and deeply too.  I will never forgive myself for breaking that trusted bond.  In the end, it wasn’t sickness that drove us apart; it was my shattering of his trust, his heart.  Sometimes I think cancer is my punishment for destroying the person I loved more than myself.

I am lucky that I have room in my heart for two men.  Hunny says that he knows he’s second in my heart to Nick and he’s ok with it.  I know he’s not, he wants to tear down those walls, and for some reason I just can’t let him. I know I am not an easy person to love.   He is a great guy; he wears his heart on his sleeve and is very passionate.  I love him; do I question whether I am in love with the idea of being in love and whether I am just seeking companionship? Yes I do, every day, especially after an argument.  I do get that warm fuzzy when I see him, when I see his smile, when he pulls me over to him when he wakes up first in the morning, when he brings me that steaming cup of hot tea in the morning or that cold martini when I get home. Is he worth it?  Yes.  Will I keep trying to let him in?  Yes.

Nick has a new love too. I think she’s pieces of me that he’ll never see.  He says she may be The Next One.  Part of my soul shattered when he said it.  I felt a little like Voldemort every time Harry destroyed a Horcrux containing bits of his soul.  Nick still carries a bit of my soul and I carry part of him too.

Time to wave goodbye now
Caught a ride with the moon
I know I know you well
Better than I
Used to haze all clouded up
My mind in the daze of why it could’ve never been
So you say and I say
You know you’re full of wish

Tori Amos, Tear in Your Hand

Yes, am full of wish, for what was once, what could have been and for what the future holds.  Sometimes I wish we’d had that strength and forgiveness to keep our marriage going. I am full of wish because I want to be the person I should be, to be the person that Hunny is in love with.  To be the person I should have been for Nick.

I know I should wave goodbye now, but 27 years of memories and a shared life is hard to forget.  The vines run deep and strong and every time a purple bloom appears, it’s a like a memory, something fleetingly beautiful to behold.  It’s something to press in a book, like that gingko leaf we pressed in our Frank Lloyd Wright book to preserve a vestige of our trip to Chicago.

I don’t want memories of me to die. It scares me to think that someday it will.  I’ll be gone and all that’s left is a refrain:

What you’ll remember of me tonight
Well, it almost makes me cry
Yeah, it almost makes me cry

Sheryl Crow, The Difficult Kind

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