Posted by: Teri Simon | 2012/01/15

What I Really Meant To Say Was….

Well, my dear friends and Blog Buddies, the past week will not go down in history as one of my personal favorites.  By a long shot. But I learned a lot, and have much to share, so let’s begin:

I had chemo on Monday, the new Alimta  treatment.  Each protocol bears with it its own learning curve, and I’ll just tell y’all right off the bat, this one was pretty darned steep!  The treatment itself is actually not bad at all.  They give you anti-nausea medicine an hour before you’re supposed to have the 10-minute infusion (not kidding!), then drip the stuff into you, flush the line, unhook you, and send you on your merry way!  Except it didn’t quite go like that.  Mondays at Vanderbilt are BUSY, so it took about 3 hours for the pharmacy to send the drug up for me.  Once Nurse Debbie got it going, the medicine dripped into me so fast it made the tubing sway!  (And it stung going in, too, which will be an important point to remember in a minute.)  Lisa, Stalwart Friend of the Oncology Visit and Pancake Pantry After, and I were pretty alarmed watching that plastic tube bearing over-anxious anti-cancer medicine sway to and fro as it delivered this toxic concoction to my open vein.  And we did enjoy the Pancake Pantry after, thinking it would all go as Leora Horn had predicted:  maybe a little nauseous, likely crash and burn with exhaustion on Wednesday and Thursday, then back up and at ’em by Friday.  But that learning curve, well, yes, it was steep.

By Tuesday night, I was puking my guts out, and remember how I told you it was noteworthy that the Alimta stings when it goes in?  Well, here’s why:  it stings on its way out, too.  Like acid burning through nose and mouth and throat.  Yeah, not fun at all.  Leora  called me in anti-nausea medicine RIGHT AWAY, and daughter, Taylor, picked it up for me.  And I thought it would calm down then, and it kind of did, but then on Wednesday, when I was getting a nurturing massage from Aryia, all of a sudden, I needed a trash can in front of me again, and there I went again.  I skulked home, feeling drained and defeated and like I had been duped by this chemo.  And forgetting something of great value that I had learned with the chemo I had last summer:  anti-nausea medications, while effective, can cause other problems, namely, and since we’re all adults here, I’ll just say it, constipation.  For which I also had no medications on hand to deal with, since my last drug, Tarceva, caused the opposite of constipation.  (Um, is that TMI?)  So come Thursday, I was not quite sure which affliction was worse:  nausea and puking, or being plugged.  What I WAS sure of was this:  Cancer sucks.  Cancer treatment sucks.  I am tired.  This is hard.  I don’t like this.  Yuck.  (And a whole lot of 4-letter words and such.)

Thursday’s acupuncture treatment was likewise uncomfortable.  On Friday, I found myself really feeling badly for everyone who had been trying to help me all week:  Leora, Lisa, Emily (who came over and brought me breakfast AND lunch that day), Taylor, Joey, Kenneth, Aryia, Sara, and Felice and the whole Gilda’s Club Monday Night Wellness Group.  And everyone who was Facebook messaging me.  And my brother and sister.  Because everyone was hoping for my wellness, my wholeness, my return to normal (whatever that means), my recovery, even my cure.

So here’s the part you’re not really gonna like, but since I’m nothing but honest with you, I’m just gonna have to write it anyway:  it pissed me off.   A lot.

I had a text conversation at some point last week with my dear friend, Gina, who is in the throes of not great news regarding her cancer, and needing to test and plan for what comes next, treatment-wise.  Gina is that awesome kind of person who does not mince words, and is gifted at cutting to the chase.  When things got really bad for me last spring, her text was the one that really perked me up the most:  “Fuck.  That sucks.”  She never tried nor tries to assume she knew where I was/am at; she just reflects back the exhaustion, the frustration, the sorrow, the anger (rage, really), the pain, the sickness, in a way that tells me, “I can’t know how it REALLY feels for you, but I know it really feels lousy.  I’m sorry.”  Our text conversation was a back-and-forth of understanding, of appreciating well-intended friends and family, and of, frankly, not having the strength, stamina, or desire to take on the guilt that’s entailed there.  She understood when I said that I just really wanted to scream at people, “YOU DON’T KNOW!!!!!!  DON’T EVEN BEGIN TO THINK YOU UNDERSTAND!!!!!”  And she understood when I suggested that I know why people get to the “I give up” point.  And she didn’t judge.  She just let me piss and moan and be sad for her situation and say “Fuck.  That sucks.”  A lot.

Then, yesterday, I had an amazing day, y’all.  Which is not to say that I was feeling a heckuva lot better, because I wasn’t (and still am not), but I am better than I was earlier in the week.  Anyway, I woke up, and got to have a phone call with my dear friend, Jane, who I went to grade school and high school with.  Jane is a remarkable woman, y’all.  A redemption story to end all redemption stories, if you ask me, complete with overcoming addictions, domestic violence, bankruptcies, illness, and job challenges.  She’s a single parent of a college boy basketball player, holding two jobs to keep ends together, and joyful in her great faith in her personal God and Savior.  I LOVE JANE.  I love that I got to be part of her redemption story, offering her up ways to find her faith and find herself and find her joy.  I love that she was such an eager “student.”  I love that she is my friend.  I don’t always, I confess, love it when my own words, thoughts, or lessons come back to bite me in the ass.  But they do, and they did yesterday morning in our conversation.  Several times.  No.  On second thought, maybe it’s kinda cool when that happens, when the student teaches the teacher.  Yeah.  Cool.

At one point in our conversation, Jane was lamenting that she had hesitated, and often does, in calling me, because she didn’t want to bother me.  Or she wasn’t quite sure what to say to me.  Or how to best offer words of support and love.  For two years, she has agonized with this question, this way to communicate with me, her beloved friend, who has Lung Junk.  We chatted about how hard it had been for me to read and hear messages intended as helpful and hopeful, only for them to be communicated as blameful, shameful, accusing, and directing.  “I felt bad,” I told her.  I wasn’t receiving things the way they were intended.  “Tell us how to tell you, then, Teri,” she told me.

In the afternoon, I attended a writers’ workshop, with and courtesy of my dear friend, Julie,”Assume the Position.” (Assume the Position refers to the evening when Julie came over, sat in my kitchen, spread her arms wide, closed her eyes, and told me this was the position of “receiving,” and to get ready to receive a ton!), put on by writer and performer, Minton Sparks.    There was A LOT that went on in this workshop, my friends, some gut-wrenching, some surprising, some interesting, some amusing.  But coming on the heels of my conversation with Jane that morning, on the heels of the hell week that was, a firecracker went off in my brain when Minton suggested to us that if we got stuck when writing, we should consider saying to ourselves, “What I really meant to say was…”  I mean, how cool was that???  It brought a whole bunch of stuff right to front and center for me, as far as dealing with what people say when one is a Flying Elephant living in the Land of Lung Junk, dealing with the sad, sorry effects of a chemo she was ill-prepared for.

AND SO……it is my long-winded responsibility, I think, to offer you, faithful readers and friends, my brief table indicating how to better talk to people who have scary illnesses and sometimes scarier treatments.  None of us is gonna get it perfect, I know, but all of us can do better when we communicate with one another about sad and scary topics.  Here’s my short and sweet (I know, how unusual of me!) guide:

What I Said Was… What I Really Meant to Say Was…
You can’t give in or give up! It scares me to see you suffer like this.
Keep sight of your goals! I wish I could make this easier for you!
Don’t be mad! I’m sorry our faith isn’t the same right now.
You should do that macrobiotic vegan diet thing. I want to cure you.
It can’t be that bad. I can’t imagine what you’re suffering.
It’s just because your faith is weak. Let me pray for you.
God gives us what we can handle. Your suffering hurts my heart.
Let me know if there’s anything I can do. I feel scared and helpless.
I’m a bad friend. You’re always in my heart.
I feel like I’m failing you. I love you so much!

 

It’s no shock, nor is it a surprise that living this life of ours is tough stuff.  Some times tougher than others.  It’s hard to know the right things to say and when to say them, and we all screw it up now and again.  What’s important, I think, is to remember that we’re all in this life together, sinking and swimming with and against tides that we’re ready for in one instant, and shock us in the next.  It was a really hard week for a Flying Elephant.  But what I really meant to say was…..thank you.  I’m grateful for your love and support.  You have all of mine.  Always.  Believe it.

Love,

Teri, the meaning to say it Flying Elephant

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Responses

  1. I’ve often thought to answer your blog with “Words fail.” but then I thought, being a word person, surely I can find something helpful to say. Maybe that’s how most people feel.

    Empathy is SO much easier and “no fail” in
    person. A hug, holding hands, soothing a brow…

    Love AND HUGS,
    Judith

  2. thank you…and by that I mean to say THANK YOU!

  3. I really do appreciate you, Kim. I’m not without screwing it up myself, and would like very much to be let off the hook for my ineptitude, too. My heart is right, but sometimes, well, not my words. You are in my thoughts and prayers, too. Always.

  4. Having had an accident that resulted in two surgeries and a degree of disability, and my momma dying, all in less than a year, I can tell you for a fact that people don’t know what to say to friends who are having personal tribulations…well-intentioned comments may not necessarily be helpful. It seems that the only thing that works is, “I’m so sorry.” Anything else may not sound right to the suffering person, because the helpful person doesn’t know they may be walking right into a rage that has nothing to do with them or their offers of assistance. You are very nice to let us all off the hook for saying or doing things that are meant to help but come off as inept…or inapt. Every single one of us wants to take this suffering away from you, and it’s nice to know that you know that. Thinking of you always…


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