And the ripples go out…..

This was NOT how I wanted to spend my birthday….

Only July 25 Mom and I were at tea celebrating my birthday and return from my first graduate school residency (which is why I haven’t written here in so long) . My phone kept vibrating but I happily ignored it figuring it was birthday wishes from my friends.  I checked as I got in the car and saw they were all from my doctors office – never a good sign.  First message was benign…please call. Weird, my annual test results were all fine.  Second message: “Marty wants you to come in and have an ultrasound and an EMB”.  My heart stops for a moment – what the hell is an EMB???   I dial and wait on hold for the receptionist who answers sounding bored and who knows nothing. With panic in my voice I firmly tell her I am a cancer survivor – I cannot wait for more information. She immediately becomes my advocate (partly I am sure because I sound like a teenager on the phone) and runs off to ask questions. Returning, she still has no idea what an EMB is but transfers me to Imaging for the ultrasound appointment. Trying to stay calm, I figure if EMB isn’t defined in my chart notes maybe it isn’t such a big deal.

I don’t tell the receptionist at Imaging about cancer (though I am certain if I pulled the cancer card again it would have been rushed) and she makes the appointment for the end of the week. I am trying to play it cool – no biggie – just some tests. While I am talking to her the phone vibrates again and I miss the call.  I check my messages and it was my doctor – DAMMIT!  She has left a more detailed message: after consulting with the other doctors they have determined my symptoms are abnormal based on my test results and I need to get in ASAP and make sure nothing is wrong.  Ultrasound first, followed by an EMB….Endometrial Biopsy IMMEDIATELY.  It is very important. She hangs up.  I call back panicked again…but she is gone for the night.

The nice receptionist I spoke with earlier schedules the “procedure” for a week later (NOW it is all in my chart!) and she tells me the instructions say I have to take 600mg of the pain meds of my choice before I arrive. That is when I start to cry. She has no idea what kind of hell I am in that moment…. I am no longer a rational human and can’t breathe any more.  I am driving down the road, talking to someone who doesn’t know what I have been through talking about yet another fucking scary invasive procedure that could be goddamn cancer. AND I SHOULD PLAN ON IT BEING PAINFUL! My body has been already been tortured so much and I thought it was done but instead they are poke and stab again and I should plan on pain. I can’t stand planning on pain, I can’t stand waiting, I can’t stand not knowing, I can’t stand everyone’s sympathetic tone of voice.  I cannot do this.

Welcome to being back at the C-word.

“Biopsy”  repeats in my head….biopsies are bad….3 years ago nearly to the day I heard the same message from a different doctor….”you must have a biopsy… chances are everything is fine but we just want to be sure.”  Everything was NOT fine.  Not at all.  And now three years later I listen to the same words and am supposed to be calm????????????????????????

I am in shock. I call my boyfriend and tell him that the doctor wants me to have an ultrasound and biopsy. There is a long silence before he says “oh”. We are quiet together for a while and then talk about birthday dinner plans. He didn’t know that I have been having problems that would warrant any tests and I feel oddly guilty for not having told him. But he is so estranged from my body that I don’t want him to know about its little oddities unless absolutely necessary.

I call my mom. “Well. Shit” she says. And I know she will fall apart when we hang up the phone. That is what she said when I told her I had cancer.  At least that is what I think she said. I can’t really remember anything but falling to the floor and how crystal clear everything looked.  I had cancer.  Do I have Cancer again?  Am I going to lose my uterus too?  Was losing a boob not enough payment for whatever shitty karma I had???

The next hour is spent in phone calls back and forth as my parents both call every 15 minutes to make sure I haven’t laid down in the road or stuck my head in the oven. I don’t but I can’t stop crying and have given up on trying to make this morning’s makeup last until dinner. Oh — dinner —  Shit.

I don’t want anyone to know.  But I can’t be alone with this. How can I go celebrate my birth when I might be dying??

I invite friends to join us as a distraction – we are going to the Irish pub in town for music, dinner and to celebrate life the way the Irish know best… by drinking. It seems somewhat fitting to go to an Irish pub after the bad news follows on the heels of so much fabulousness at grad school. They know something about luck – even bad luck.  And if I need to fight …well that is in my Irish blood as much as being a cancer survivor already is too.

So off to redo my makeup and put on a happy face. I will have a pint or two. I can’t do anything about this for a week.  No sense ruining my birthday.  And yet the tears…STOP IT! Goddamn it. Why don’t I have waterproof mascara?

 **********

The next day I wake up unusually early.  How do I get through this?  It occurs to me that IF I have cancer again then in another week the machine’s wheels are going to start spinning and I won’t be able to slow it down until it is all over.  This I know now. And how do I want to spend my last week of “freedom”?.  Seems perverse to rationalize time this way, but it is true.  Before BC I thought I was in control, that there was time.  I thought I knew what it was like to be scared, I thought I knew how strong I was.  I had no clue. Even after BC I thought I knew what scared was like….but a phone call changes everything.  The line from the Mat Kearny song repeats in my head…“we are all one phone call from our knees”. 

I feel like I am assisting at my own trauma scene.  Stand back, observe, take it slow, stay calm. Time has slowed down to increments of check in: “How are you now?  And how about now?”.  Don’t give in to the panic…slow down the tears….they are only going to get in the way of an accurate information about the severity of the scene. Assess, acknowledge, distraction, humor, then back to assess, acknowledge, distraction, humor.  That is what I was taught and I am my own patient.

So here I am again, back in the land of endless phone calls and doctors visits.  This time the ante has been upped because the potential of a second cancer is a far more dangerous  statement than the fluke of a first. I feel like the first cancer is bad luck, the second…well you are kind of screwed – you are a cancer breeder.  And the irony of it is…this cancer potential may be a direct result of the treatment for preventing another cancer potential. There are no good choices. The doctors and nurses are sympathetic, they say “you are so young” in the tone of ‘we are so sad for you’ even when they are trying to convey ‘you really shouldn’t worry because your age makes it unlikely’.  But I have been told that before and look where we are.

I haven’t told anyone that I have to look in the eye besides my parents.  I can’t see it in their faces.  I don’t know what is going to happen and I don’t want them to know how terrified I am.  That my bowels have turned to liquid and I can’t breathe and I have to keep on going because I have a home and a life and schoolwork and we are going golfing and Neil’s moms’ new boyfriend is coming to dinner and my calendar is full everyday for the next week. I have to keep moving.  And so I do.

**********

So here we are, a week later and I am still waiting on the results of the biopsy. (Which was horrible and painful and something I never want to repeat again). Somewhere in the past week things shifted in me.

I woke up one morning and realized that just because this path looks an awful lot like that path they are NOT the same.  Just because things were bad once does not lock them into being bad again. In fact, all this recent fabulousness with grad school goes to prove that you can jump the grooves in the record and create something completely new.

And the other thing I realized (thanks to my father who I really do occasionally listen to) was that I do not have to be alone in this. I do not have to play brave or act like it is routine or care-take others so that they don’t worry. I get to share my fears and I am not less for doing so. No one thinks I am a pest when doctors are mentioning cancer again in whispers. I have a community for a reason and they love me in my strength and weakness. And so I shared what was going on – and I didn’t even preface it with “it’s probably nothing but…” I said I was scared because I was and they gave me a place to lean until I could be less scared.  (thank you Kelly and Theresa!)

This blog piece is something I wrote a week ago and never showed anyone – nor did I plan to (my writing is like hiccups – I don’t know WHY I do it but I can’t stop it). I was afraid that my fear and reaction to this was too over the top and that it really wasn’t worth sharing. Until I saw Katie’s post “Nothing Is Ever Simple”  from her blog Uneasy Pink.

Katie was going through a very similar thing at the same time.  Everything turned out fine but she was scared and felt alone and angry.  She reached out to her community and it responded – she was stronger for it and so were they.  We are never alone and we should never think that we ought to be.

I am learning, bit by bit in my advocacy work and in my writing that as I bare more soul more, and am honest my own struggles and success, I reach other people who then gain courage to be wholly themselves and reach out. And as my teacher says:  the ripples go out…………..

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8 thoughts on “And the ripples go out…..

  1. I love you..and I am here for your…Please don’t push away but embrace..I can duck tape my mouth turn up the volume in my large ears and listen to you and all your vents, humor and wisdom…I have large shoulders and long arms to surround you and hold you up if you need to have a good cry. I have note taking skills and can take notes as you speak to Dr.’s and they speak to you.

    Sending thoughts, prayers, healing vibes, and love into the universe to you..

  2. Damn, Woman! Beautiful, powerful, painful, and . . .
    one helluva fucking cliff-hanger.
    Any hour, any day, have wheels, will be there. Just pick up the phone.

    Thank you for writing.

  3. Oh, you are so NOT alone. This is very powerful stuff here you have written. Thank you for so openly sharing about your fears. I just went through some tests recently too… Hope all turns out well. No matter what, your dad is right, no need to go it alone!

  4. It’s been awhile since you last wrote, Robyn. Have been thinking of you & hope you can update us as soon as you are able. Until then we’re all still here… on the other side of your computer screen.

    A new friend~ Andrea

    1. Hi Andrea! I just started grad school and a new job…feeling a bit overwhelmed! but I have some new pieces in the works..I have not forgotten everyone and am so delighted that you remember me!!!

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