Monday, September 28, 2015

Pity Party and a Breast Cancer Lesson

Six years ago, when first diagnosed with cancer, I did what many do, including you, dear reader, who is maybe finding my blog for the first time.   I searched online for breast cancer stories, to find other women like me.  The one burning question I had, that you have too, is "What is going to happen to me?  Am I going to die of cancer?"

We all think that at the beginning.  Every single one of us.

The computer savvy among us go online. We research statistics, even though we don't truly understand what they mean. We read studies without knowing medical terminology.  Most importantly,  we find stories.  We find people with our stage, our age, our type of breast cancer and scan their histories for clues to our future.   We look for similarities in others thinking that in them, we can find ourselves.  We join forums and inspect signatures, looking for smoke signals that say we'll be okay.  "She has HER2+ Stage 2 cancer and has been alive for years" we think.  "Maybe it's not so bad." Our minds are programmed to make sense out of randomness and we refuse to accept that life is unknowable.

Early on, I was as voracious in my studies as any first year medical student.  I spent many bleary-eyed nights reading.  I read blogs, I read statistics, books about statistics (learning that I couldn't rely on statistics).  I read science textbooks, as well as  CaringBridge diaries.   But mostly, I read forums.  I joined the breastcancer.org forums and Her2 forums, among others, where I found practical, interactive value.   Not only did I read, I could talk, and ask questions, and share my treatment and find out what others thought.  I discovered what therapies other women were getting, what should happen when, what to expect with surgeries, even where to go for help or hats.  I learned that coping mechanisms are varied: many women are terrified, but not all.  Many woman turn to religion and there are atheists in foxholes.  Many are hopeful and the same number feel profound sadness.  I learned that neither sarcasm nor earnestness always go over well in written form, and that cancer doesn't always make people kind.

Not even me.

As I progressed with my disease, forums and the give and take had less value, and eventually became a negative for me. I knew too many woman like me, who I'd talked to, been friends with, who had progressed and then died.  It seemed wrong, to me,  to read about the death of a friend, post about how much you cared in her thread and extend sympathies to her family, and then not five minutes later, move on to the next thread to discuss your hot flashes. It seemed disrespectful, discordant with reality.  Yes, we tell ourselves, life goes on.  But still....it felt dirty.   So I stopped and stuck to facebook.   But for a while, it was a lifeline.

During that time when the fear was fresh, I met some wonderful women, a few of whom I'd kept in touch with and some who I had not but who followed me on this blog and voted for me in the contests, etc.  One particular woman has been a faithful friend, always sending me cards and trinkets, never caring whether I was healthy or sick, able to respond or not; she was just always in my online life.   She told me that a group of women who all had reconstruction at the same time I did have been meeting in Vegas annually, which I vaguely remember from my time on the forums, and this year my friend, who was an early member of this group, invited me to go as her guest.

Normally, I would say no.   Travel is hard and my health is unpredictable. It seems unfair to spend money on a trip that my husband doesn't go on; we've gone so few places together the past decade. In truth, I realize most of the traveling I like to do is between the pages of a book, safe in my bed.  Plus, I thought,  I'm not a "Vegas Person."  I don't drink (anymore), gamble, and these days - eat.  There are a million reasons not to go, and I thought of all of them.

Southwest had a sale and I booked it anyway.

I can still surprise myself.

This was back in June, when I was feeling pretty good for living in CancerLand.  The pain that I had back then was the same pain I have had for years, manageable with medication, fine if I rest.   It's a sad fact that I can no longer live without pain meds but a happy fact that it is controlled well enough.  My inability to eat means I am weak and have no stamina, and my anemia means I sleep a lot, but for the most part, I felt I could enjoy a trip and maybe participate and there was no reason to think I couldn't even improve between June and September.

What is that saying?  Life is what happens while you are busy making other plans?  Intense pain started up in my left side, the same place I've always had pain.  It's like a knife that had been there for years suddenly was heated up and twisted.  The intensity came and went, starting as a burning coal in my left side, spreading through my flank and throbbing into my back, making sleep difficult.  I had an attack two weeks before my trip that had me retching on the floor over a red plastic bowl kept under my bed for past attacks of nausea and nearly forgotten about.  The pain is so strong I felt I should go to the ER.  (I'm stubborn, I *hate* the ER; I did not go.)  Next day, I made an emergency appointment with my oncologist.  In an illustration of how close the cloud of cancer is, his smile turned to knitted brows in a nanosecond - I had a CT the next morning and my doctor had the results before I even got home.

No new cancer.

The pain had already eased, at least back to slightly above normal knife levels.  Then it heated up again, and again, I was a rolling ball of drug-slamming hurt.  Because life loves to screw with you, the pain began on a Friday night.  Again I waffled about the ER but again didn't go. We now know it's not cancer, I'm not dying, all systems are functioning - so it can wait.  I'll call on Monday if it's still there.  And naturally, Monday rolled around, with my trip two days away, and the pain, again, had waned.  I was left feeling bruised, like a cruel boyfriend had kicked me in the side; but battered women get up every day, and so did I.  I packed.   People started suggesting it was kidney stones, and that made sense.  I drank a lot of water.

I sent vibes to the universe that the pain stay at the lowest level for the next week, packed my pain meds and a few extra, and got on the plane.

Vegas was beautiful, and one doesn't have to be a "vegas person" to be impressed.  My friend was everything I expected and more - a solid supporter and a person who took care of me - she even had a limo waiting for me at the airport, making me feel like a celebrity.

I've been so independent all my life that I'm slightly startled that somebody helping me is what I need now, but it is the truth.

My room (at the Arias, quite lovely) was an adjoining room with my friend next door.  She was sharing with other friends to keep costs down; I need my privacy more than money.  We kept the doors between the rooms ajar so we could chat.  While we were all getting ready to go to a reception, the pain started up in my side again.  Frustrated, I took some meds and rested on the bed, my favorite humor radio show playing on the phone to calm me down.  Next door, I could hear the women chattering eagerly and excitedly.  The music played, the wine flowed,  and they began singing.   As the meds took effect, I peeked in and they were doing that beautiful girl thing  - getting dressed together, blowdrying hair, all sharing a bathroom and singing and dancing with towels wrapped around them.  These women were mothers, grandmothers even, but still young and sexy, from all parts of the country - and sharing joy.  They had formed this friendship long ago and were uninhibitedly loving each other.

Like sisters.  There in front of me were the mythical breast cancer sisters we have heard so much about.  Like unicorns, so strong and solid and rare.

Aching with admiration and pain, I took video for them. Generously, they wanted to include me but knowing the pain was etched on my face, I insisted on staying behind the camera and participating that way.

On the way to the reception, walking with these unicorn women, men were falling over themselves to talk to them. These girls just strode through the Vegas strip, glowing, owning their space.  Heads turned. They had their power back and it showed.

And that's when I lost mine.

It's not my nature to feel sorry for myself but nature lost its way.  A tear slipped past my eyelash extensions as it hit me - we'd all been diagnosed with cancer at the same time, and for them it was over; in the past.   They felt good, they looked beautiful, they had their lives back. They weren't living in pain, taking medication with the spectre of death hovering near.  They could eat, enjoy their lives, and even drink and dance the night away as I would have done just a few years ago. They had developed these friendships and grown their lives while I'd been sick, doing chemo after chemo, and sleeping.  They got to be the mythical survivors, and I didn't.  They were done, and I wasn't.  They were healthy and I was still sick, in treatment every three weeks, year after year, turning into a weakly skeleton.    It felt so unfair.

I gave myself a pity party.

I know.  Not my finest moment.

As a tear fell, I quickly brought the ever-present Perjeta/Herceptin drip Kleenex to my eye.  I hoped no one would notice my moment of despair,  but one of these girls, observant, asked "What's wrong, are you okay?"    And I briefly shared my thoughts, simply saying "You all look so healthy and for me it's not over"  and was rewarded with a gift of a simple kiss on the cheek and the comment, "You know what?  That really sucks."

Validated.  No false claims of "you'll get there too" or "you are doing so well" or "you don't look sick"   or whatever it is that people say that I no longer listen to.  Just the truth.

Yes, it sucks.

We soon saw a Vegas bride, standing in her wedding dress near a slot machine, her proud and slightly tipsy parents handing out flowers, her shell-shocked husband handing her a water bottle. She bragged that she'd found her beaded and tulled gown just the day before, and I realized this was all spur of the moment, a true Vegas wedding.   We congratulated her, and as I took a flower,  I transferred my sympathy to her as I imagined how her life, like all of ours, will not go as she planned this night.  She'll have too many babies or none at all, she'll get divorced or stay married but either way, there will be rough times. He'll cheat or she will, dogs will crap in the house and cats will scratch the furniture and they'll blame each other.  She will have love and sadness, grace and pain. She may even get cancer, or he will. That's how it goes, I thought, as we walked on, sniffing our posies.

At the reception, I met many women, some who knew me from this blog, some who didn't.  I was struck by the disparate group, seemingly having nothing in common yet sharing complete togetherness.  There seemed to be every difference you could imagine - ethnic, socioeconomic, age, nationality,  yet none of it mattered. They were  all coming together in what appeared to be true, loving friendship and sisterhood started by a common experience.  Real sisterhood, the kind that consists of unconditional support.

It just worked.  There was not a  moment of cattiness.  I dare you to find a group of 40 women who lift each other up like that.  There was love in that room, palpable as our lumps were so many years ago.  My eyes prickled again, this time in appreciation. They took an ugly, terrible, life-changing experience and turned it into a thing of beauty and are flashing life for the world to see.

I realized how trivial and self-centered my pity party had been. Deep-down, cancer is not over for any of them, which is one reason they meet 7 years later. They have fears of relapse. They have hot flashes and bone aches and tales of tamoxifen and arimidex and nerve damage leftover from chemo, they have anxiety about their next mammogram or oncology appointment, and they have friends, who like me, are metastatic and who they worry about. Yes, maybe my life is more difficult and will be shorter, or maybe it only seemed that way in that selfish moment.  I am here now, and now is all that counts.

Every year, these girls walk towards each other under the starburst lights of Vegas.  Some drive, some fly, some save pennies for this moment of rare sisterhood.  If you really are searching for the answer, here is the truth:  yes, you will die.  If not of cancer, then of old age.  The mystery of your future is really no mystery at all.  At the very end,  we all end up in the same place, with emerald grass waving over our heads inside an eternity of blue silence.  The lesson of cancer, of life,  is to find your family, wherever they may be and love them while you can.  Some get married by slot machines in Vegas and some find each other on stormy seas of disease.  It is who we cling to for comfort and friendship while on our walk through life that makes our journey sublime.


38 comments:

  1. Ann, you are ANYTHING BUT a pity party or trivial... you are authentic! I hate that you're having pain but I'm so happy you are still here! When I first met you online when I was diagnosed you didn't think you would make it to the end of the year. That was 2013. I love your honesty. Cancer sucks for pretty much everyone who gets it but it's much, much worse for Metsters. I was just thinking of you as we head into PInktober. HUGS!!!!

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    1. I think "cancer sucks" pretty much sums it up for all of us.

      October....the big pink behemoth awaits.

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  2. Beautifully written, Ann. Thank you.

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  3. You got it girl. And you share it. Thank you.

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  4. You got it girl. And you share it. Thank you.

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  5. Wow!! Simply beautiful. Thank you, Ann.

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  6. That was such an awesome post! I'm so glad you went on this trip despite the difficulties. It is often much easier to stay home.

    I remember the days (weeks, months, years!) on BCO and hearing about the yearly Vegas trip some of the ladies took. I thought it odd that a group with [what appeared to be] nothing else in common except being female and having breast cancer could look so forward to being together for several days despite not knowing each other in person. That did not sound appealing to me. But then I fell into a small group of women on BCO and we started our own private Facebook page and we "talk" every day. There are seven of us — I call them my "rubies" — and have written about them on my blog. Though we have yet to all meet each other, we each have met at least one of the other group members. January 2016 will mark five years that we have known each other. That deserves a celebration, maybe with a trip to Vegas...

    I'm grateful for the many people I've had the chance to share this sucky cancer experience with, people I would never know if not for my computer. And you are one of them, Ann! Thanks for always being real and sharing from your heart.

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    1. I'd recommend you go meet your friends. It's a great experience and Vegas is very cool!

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  7. Ann, your words are very touching and powerful.

    I understand the emotional connection we have with those who have walked the cancer path. I too joined an online forum when I was dx and still stay in contact with them. It is very hard, because like you, we've lost a few of them -- some younger than me. The bond is strong and it hurts every time one isn't doing well. I wouldn't change knowing them though. It is a sisterhood like no other, and although the reason sucks, I am grateful to have their love and support. I am grateful for you too.

    I am very sorry about your pain. I wish it could go away (or that it wasn't so severe at times). I am glad you still took the time to re-connect and take a break. Sometimes it's just what we need.

    You are always in my prayers.

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  8. Ann, your eloquence is showing. Thank you so much for being.
    Shawn

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    1. Agree! Ann, wonderfully said, it is the journey of a lifetime! At this point, I can only be happy that am here for the ride, can't know what will come next.

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  9. Wonderful post, from a fellow metser (lung cancer for me). I get it.
    lisa.ericgoldman.org

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    1. I read some of your blog. Same experiences, different cancer. Hope you continue to do well.

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  10. Very well said Ann. I love your profound insight into life and I will hold it close to me. Thank you for your wisdom, born out of the pain of life.
    I wish that the meadow you referred to in a blog a while ago stretches endlessly into the distance in front of you.

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  11. A beautiful post. I allow myself a pity party every year or so. Sometimes I just can't take it any more and need to allow myself the time to stop pretending for a few minutes. Its just us allowing our insides to come out for a bit.

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  12. Ann, you are just a beacon of authenticity for me. I love you so much! I'm only 1 1/2 hours from you. I hope someday we meet...for now, thank you, just thank you for all your words. I'm so sorry for your pain

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  13. Amazing, Ann. Thank you for writing such a beautiful piece.

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  14. Just as suspected, I found your blog, when my Mom was diagnosed back in 2013. In December, of 2012, technically, but things went crazy, after her breast cancer diagnosis and then her lung cancer diagnosis, when they were doing pre-op testing for her mastectomy. I've gotten a lot out of your writings. Your wisdom, your knowledge... and I'm a Komen convert! I tell everyone, every chance I get, to NOT support it and then I offer them all the reasons I can remember, from your blog. I'm so glad that you put that all out there. Thank you.

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    1. Thank you! Keep watching this month for more reasons!

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  15. Ann,

    Wonderfully insightful piece, and I enjoyed reading about the lovely time you had with these cool women. You are entitled to a pity party now and again. Like that woman says, it completely sucks that you are not done, but as you pointed out, no one is ever done with breast cancer. Of course, you have endured so much more than many people. I wish you stay disease-free forever, and I am proud of you for going on this trip.

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