Welcome to Limbo Land

17 Nov

“I have a port,” I tell the woman at the front desk of the Cancertown lab, feeling a bit like a character in a spy novel.

“And I have a fine Madeira,” I imagine her replying while surreptitiously handing me some microfilm.

Instead, she tells me to take a seat where I wait dutifully until an oncology nurse fetches me. It’s my first post-treatment check-up and as with all my doctor’s appointments, bloodletting is the first order of business, something easily and efficiently accomplished via the port buried in my skin under my right clavicle.

After leading me back to a small curtained booth, the oncology nurse first flushes the port (instantly filling my mouth and nose with the smell of Liquid Hospital) then begins taking blood, chatting all the while about her twin sister, a radiation oncologist in another city (“She’s Beam-O and I’m Chemo,” she tells me. “Beam-O and Chemo, get it?”).

After she has what she needs, I go back to the main lobby and loiter until yet another oncology nurse comes out and escorts me into the inner sanctum, where I’m weighed, cuffed (blood pressure not hand) and asked questions about everything from my sex life to my bowel movements.

“I’m a little nervous,” I tell her, after the Q & A is over. “This is my first post-treatment appointment and I don’t really know what to expect.”

I’m lying, of course. What I expect is that my oncologist will take one look at me and hand me a Get Out of Cancer Free card. Or maybe a diploma or certificate or testimonial like the Wizard of Oz gave the Tin Woodsman. I’d be equally happy with a report card stating that I’ve just graduated from Cancer U with all A’s (pending my extra credit Reconstruction homework). I want something, though. Something that confirms that the boob loss, the bone pain, the radiation burns and the hair loss — god, the hair loss! — have all been worth it. That I’ve kicked cancer’s ass. That I’m done.

 The look on the nurse’s face indicates that some of these expectations have been spoken aloud. Which is when I start to get the feeling I’m not going to be told “Good job, well done.” In fact, the look on her face makes me wonder if there is such a thing as done.

 “The doctor will be in in a minute,” she says, getting up. “She’ll explain everything.”

A couple of minutes later, my oncologist opens the door and we chitchat until I can’t take it any longer.

“So am I cancer-free or what?” I ask. “Am I cured?”

“We don’t really use the C-word around here,” she says, speaking slowly, like you would to a person with a recent head injury. “You remember when we talked about recurrence? When we went over the statistics?”

I remember. The chemo cocktail I chose — taxotere and cytoxan — offered a recurrence rate of 12%. The other cocktail, the one that contained adriamycin (aka the Red Devil) had a smaller recurrence rate (10%), but upped your risk of heart disease. And as they say in Skagit Valley (where I grew up), my family has bad tickers up the ying yang.

“Some of the breast cancer survivors I talk to on Twitter have mentioned something called NED,” I push. ‘”That whole no evidence of disease thing. Can I at least get an NED?”

She sighs.

“You’re low-risk,” she says at last. “I have other patients I’m a lot more concerned about. But really, what you need to do right now is just focus on healing. You have a lot of emotional healing to do.”

She then starts to tell me the lay of the land. I don’t know it at the time, but the country she describes has a name. Limbo Land.

I listen as she talk about how I’ll be coming in every three months for what sounds like the rest of my life. Just like today, they’ll take my blood to look for tumor markers and such. My job will be to tell her if I develop a weird persistent pain. Or become short of breath. Or start coughing a lot.

Metastatic breast cancer, I know, occurs most often in the brain, the bones, the liver and the lungs. (I’d memorized this my first day of cancer class.)

“Your test results will be back tomorrow,” she says, after spending a few minutes checking out my glowing red chest. “I’ll call you when they come in.”

“Okay,” I say, wiping my eyes. Somewhere during the exam, I’d started crying. I always do when reconstruction comes up. Apparently, I’m still mourning the loss of my girls. And praying that I’ll be able to salvage what’s left of them (i.e., my left nipple and skin) although I’m in Limbo Land there, too. I have no idea if my irradiated skin will hold a tissue expander and implant or if I’ll have to have a series of surgeries to build a new left boob. This will be determined by another doctor, another time.

Right now, though, it’s time to leave. Sans diploma.

I blow my nose and get dressed and make my next follow-up appointment with the receptionist out front. Then I lurch out of the office, trying to remember the important things that were said, only half of which I managed to write down, as usual.  Once I get back to my neighborhood, I duck into my favorite watering hole and practice coping mechanisms for a couple of hours. Then I go home and try my best to keep my head from exploding.

The next morning, my doctor calls and tells me my white cell count looks great. Ditto for the tumor markers.

“They were 12,” she says. “Anything under 40 is normal.”

I thank her giddily (good news, at last!) and try to hang up but she has more to share. Apparently, she’s reviewed my file and noticed that my CT scan from last March showed something funky on one of my lungs.

“You have a 4 millimeter lung nodule,” she says. “It’s probably just scar tissue but I’m going to have you come back for a CT scan in March.”

Okay, I say and put down the phone.

I was hoping for a testimonial. A report card full of A’s. A certificate I could hang on my wall, telling me that this cancer crap was history. That it was all over. That I’d won and was done. Instead, I got a lung nodule and a cold hard glimpse at my future, a future filled with quarterly blood draws and anxiously awaited test results. A future pungent with the aroma of Liquid Hospital and hot fear. A long, endless mindfuck of a future as comfortless and abrasive as the discount tissue dutifully stocked in each and every exam room.

I’d fought my way through surgery and chemo and radiation to get to the other side. But there was no other side, I realized now. There was only Limbo Land, where there were no answers, no gold stars, no C-word (at least not the one my oncologist was referring to) —  not for a very long time.

I stare at the phone thinking about how much I already hate this place, especially the sneaky way it came up behind me, squelching my breathless triumphs with a fat spiteful thumb.

And then I smile. Because it doesn’t matter whether I like this place or not, just like it didn’t matter whether I liked surgery or chemo or radiation or any of the other crap I’ve endured and overcome these last ten months.

Because I’m going to kick Limbo Land’s sorry ass.  I am.  And then I’m coming back for my goddamned diploma.

36 Responses to “Welcome to Limbo Land”

  1. DrAttai November 17, 2011 at 8:41 pm #

    Make sure you post a picture of that diploma! Hang in there – I’m sure you’ll get it!

  2. Chemobabe November 17, 2011 at 8:52 pm #

    Oh, DW… Why don’t we get our finish line? Why don’t we get our good job pat-on-the-back you did it girl?

    Limbo land indeed. Welcome. Nice to have your company.

  3. Liza November 17, 2011 at 8:55 pm #

    OMG – I have the very same appointment you write about this coming Monday! And my version of the lung nodule is anemia with blood in the stool – hence a new round of tests. I’m beginning to wonder if this merry-go-round (which isn’t so merry) will ever end? Or maybe I don’t even want to ask that question – anything with ‘end’ in it kinda freaks me out these days. How do we keep from panicking with every headache and bone ache – what, exactly, is a ‘weird persistent pain’ ??? And why is a tumor marker result of 12 OK? Shouldn’t it be zero??? I guess I was so naive to think that after surgery, chemo, and rebuilding of the girls, I’d be done – it’s beginning to feel the bad ‘c’ word is a rest-of-your-life sentence. Well, thank you for letting me know what’s to come – I was wondering … Take care!!

    • singleshot1 November 20, 2011 at 9:44 am #

      Thanks for the message and good luck with your appointment tomorrow (and this next round of tests). I have the same questions about persistent pain and tumor markers as you (why is 12 acceptable? my left eye has been hurting for a couple of days, is that cancer?). I got accustomed to treatment (read up on it, interviewed people about it beforehand, etc) but post-treatment is a brand new territory, full of dark alleys and Cherry Pitfalls (if you remember the old game Candyland). Am trying to just take things in stride. Hope you’ll be able to do the same. Again, thanks for the read and the comment. Take care and let me know how things go tomorrow!

      • Liza November 21, 2011 at 7:06 pm #

        So I had the ‘what do we next?’ post-chemo meeting with the MD today. Next on the menu is Arimidex (for us post-meno ladies), checkups every 3 months for the 1st year, and …… that’s it. No mammograms (no mammos to gram) and apparently bloodwork or any other form of diagnostic is not helpful in my situation. I’m supposed to be alert to any pain that doesn’t go away …. so I complained about my tailbone – injured in college super jock days – but getting to the point of not being able to sit for more than 20 minutes. I, of course, had visions of a humongous tumor hidden by my curvaceous gluts. Faster than you can say ‘metastasis’ I found myself on the x-ray table which thankfully (?) showed arthritis, but no cancer – big phew! Next up is colonoscopy in Dec – that will be scary – but maybe I’ll start 2012 with a clean bill of health! But then again, I thought I was healthy last New Year’s…..

  4. Rebekah November 17, 2011 at 9:02 pm #

    Glad to see the update, raw as reality is. I’ll be clapping for you from the audience when Pomp & Circumstance starts to play.

  5. AnneMarie @chemobrainfog November 17, 2011 at 11:39 pm #

    I hear you….. and I HATE this shit, too. I’m coming out west…… I need to GTF out of dodge. I’ll sit in your favorite watering hole with you til every bottle of tequila is dry……

    xoxox
    AnneMarie

  6. Renn November 18, 2011 at 1:21 am #

    I so get being in Limbo Land. Seems the cancer train drops all of us off here at some point along the way. Some of us take up long-term residence; some escape quickly. I am in the former category, looking for the latter.

    Keep up the great writing!

    Renn

  7. Kim November 18, 2011 at 4:55 am #

    Wait a dag-gum-minute. Are you telling me that there is no certificate of completion at the end??? Seriously?

    Crap.

    I was totally hoping to add that to my resume.

    • singleshot1 November 20, 2011 at 9:45 am #

      Me, too!

      • Kim November 22, 2011 at 11:01 am #

        Just got my port inserted this morning. She gave me a card to put in my wallet that identifies me as a ported person. I’m officially a card carrying cancer chick. Rock on.

        As long as I don’t have to wear the pink ribbon, I’m okay with this…

  8. Belinda November 18, 2011 at 5:58 am #

    I’m thinking its five years in Limbo Land at least. So the emotional rollercoaster goes on and on. I’m still undergoing chemo and also have my own blog called meandboblivingwithcancer – and yes Bob is what I named my cancer. Keep on going, keep on going and keep on smiling we will beat this thing yet!!!

  9. Amanda November 18, 2011 at 6:17 am #

    Congatulations on completing treatment! Unfortunately, the dr is right. You are done with your major treatment!! But u still have a lot of emotional work to do. It’s hard, but u will come out on the other side and eventually start to feel that you ARE on the other side. I actually still have cancer (stage 4) and finally feel like I’m on the other side. Ut takes a lot of work and a lit of healing, but you’ll get there! Hang in there!

    • VMC November 18, 2011 at 12:21 pm #

      You rock

  10. Nancy's Point November 18, 2011 at 6:34 am #

    This is a fabulous post! You articulated what it feels like to arrive in Limbo Land perfectly! It is all very odd isn’t it? “Concrete doneness” would be so much nicer, but as they say, it is what it is.

    Good luck here on this side of things. At least there are lots of us here to offer support.

    • singleshot1 November 20, 2011 at 9:51 am #

      Thanks Nancy! Yes, I’m afraid I’m all about “concrete doneness”; hate the up in the air stuff, although I guess I’m going to have to learn how to live up in the air, just as I’ve learned to live without boobs, hair, dignity (at times), etc. It is comforting to know that I’m not alone in Limboland, just like I’m not alone in the Breast Cancer Club. Although I think I’d still rather be in the Elks (and that’s saying a lot).

  11. VMC November 18, 2011 at 12:20 pm #

    This is your best written post yet, I believe. I am in that Limbo land now as well. Geeze, I didn’t even think to ask about a “tumor marker”…So does anyone else here sometimes go through periods of time when you are scouring the internet looking at things like 5 year survival stats for ladies in the same cancer stage, and then you finally realize you just have to turn off the computer because no matter what stas you see it will not give you any real peace? Just another room with a view in Limbo land…

    • singleshot1 November 20, 2011 at 9:55 am #

      Thanks for the kind words, VMC. And yes, I’ve totally done the Internet scour. My sister refers to the web as “the abyss” — and with good reason. Every time you go online, you read something horrific (before chemo, I got really rattled by accounts of fingernails turning black and falling off, etc). I try my best to avoid looking up “my odds” these days. Don’t know about you, but I don’t want any more scary stories, I just want some calm and quiet and maybe a few distractions to keep me from even remembering that I’ve got this cancer thing hanging over my head. That reminds me, I think it’s time to sign up for more swing dance classes. ; )

  12. Vonnie November 18, 2011 at 12:53 pm #

    Wow, I feel guilty that my only limbo land right now is whether I’m moving back to NY or staying in Florida. But, these posts/comments keep things in perpective, I’m a lucky bitch and rooting for all you guys.

    • singleshot1 November 20, 2011 at 9:57 am #

      Thanks for rooting, Vonnie (and also reading and writing). Don’t know what to tell you about your decision re NY or Florida, but I’d say do whatever makes you happiest. Life is short (apparently).

  13. Robert Domitz (aka Jalapeno Bob) November 21, 2011 at 1:22 pm #

    Congratulations on completing treatment! Now, it is time to concentrate on recovering from treatment.

    You may be in “Limbo Land” for quite some time. Victories here are few, fleeting and far between – celebrate them when you can! Gather your friends and family and try to have a happy Thanksgiving.

    Just keep on writing…. I will keep reading…

    Congratulations and happy Thanksgiving!

  14. pinkunderbelly November 21, 2011 at 2:27 pm #

    I’m so glad to have found your blog! I love, love, love this post. You nailed it. Limbo Land is such an apt description. I too expected some form of “done” — diploma, certificate, clean bill of health — but am learning that there is no “done.” Can’t wait to read more of your blog.

  15. Laura November 21, 2011 at 11:08 pm #

    Please excuse my language but, YOU FUCKING ROCK!
    You are right, you WILL get your diploma!
    Cancer can suck it!

  16. Terri November 22, 2011 at 9:44 am #

    Love, love, LOVE this. Thank you for sharing. Love your sense of humour and writing style. I’m not sure why I haven’t been a regular reader up until now, but will be moving forward. Going to share this on the Facebook Page for A Fresh Chapter. Thank you for articulating what so many of us feel. And thank you for deciding to kick Limbo Land’s Sorry Ass. I’m with you!

  17. Stacey November 22, 2011 at 12:46 pm #

    Wow! Amazing post, which couldn’t be more accurate. You totally nailed all of it. The endless round of appointments, tests, numbers, scans, hoping for good news that lasts…about a day before the worry starts all over again. At least you’re not alone in Limbo Land. You’ve got a lot of company.

  18. Anne Elise OConnor November 22, 2011 at 3:18 pm #

    Diane,

    I just found your blog and I think it’s great! I have a blog that deals with similar issues so I wrote about your post and linked to it (http://www.dramaticadealswith.com/diseases/new-normal-or-limbo-land/). Hope that’s OK with you.

    You can check out my blog at http://www.dramaticadealswith.com/

    Anne Elise a.k.a. Dramatica

  19. Katherine Malmo November 22, 2011 at 3:50 pm #

    Oh yes. I remember those days. I just told myself over and over, “I’m doing everything I can.” I worried all the time and have learned that worry will get me nowhere. We do what we can then… We just hope for the best.

  20. Brandie November 22, 2011 at 4:38 pm #

    Limbo land indeed. And it sucks. I’m just a few steps behind you and I dread it. And why can’t they give us something? This treatment sucks. I’d like a certificate. I remember my last day of chemo … it just felt so anti-climatic. I brought in a treat for all the nurses so we could celebrate together, and it was nice, but just doesn’t feel like enough.

  21. lisa daria November 22, 2011 at 5:37 pm #

    I was shocked in limbo land when I realized it had traffic jams just like pre LiLa – but surely I wasn’t meant to spend my precious time STUCK in traffic, there must be another freeway for cancer survivors, right? Funny still what’ll get to me and what doesn’t.

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