Declaring an Asshattery-Free Zone

Been an interesting few weeks. I can’t talk about all of it, but let’s just say that a confluence of recent happenings, both planned and unexpected, have put me through the emotional wringer.

One of my blog sisters recently published an excellent post on trying to recover her Equilibrium after all her cancer treatment and cancer-related surgeries are now (for the time being) done. In it, she writes:

“My pact with myself is to start picking up the pieces of all that has been cast aside.

My two biggest challenges? Limited energy and impatience.

[…] But I am so behind. And when I hit the wall, it is made [of] unforgiving, solid brick.”

Oh, yeah.

The last few weeks have reminded me of how fragile my so-called equilibrium is. I know I have some. Else I’d be in a rubber room by now. It’s just that whenever I feel like I’ve bolstered it a little, something can come along to throw me right on my already-bruised keister. I’m not even talking about big somethings. I’ve weathered a few big somethings. I’m talking about the little somethings — the thoughtless remark, the unintended consequence, the erroneous assumption, even the rare and unexpected bit of kindness and validation — that remind me of exactly how hard it is to live in this parallel universe of cancerland, and how invisible it is to many of the people who don’t live here.

I’ll describe the unexpected kindness and validation. Hell with the other stuff. Last week, I officially ditched my former breast cancer surgeon and met my new breast cancer surgeon. [Choosing A New Doctor] My former surgeon has left her practice, and my new surgeon was, as of last week, still waiting for her old practice to send him my file. So today, I returned a voicemail from my former surgeon’s secretary to chase it down.

This woman, whom I’ll call Miranda, has been stellar from the moment I first talked to her. That was after the suspicious screening mammogram I had in 2008, which was followed by the suspicious diagnostic mammogram I had several days later, which was immediately followed by the radiologist walking into the room to tell me I needed to get a biopsy. With arguable foolishness, I wasn’t even worried at that point. Just figured everyone was being conscientious. So, I asked around and got a few names and called up the office of my now-former breast surgeon. I said I needed to see the surgeon and was shifted over to Miranda. I told her my brief story, said I was advised to get a breast biopsy, and asked if I could make an appointment. And dear, compassionate, no-mucking-around Miranda said, “Could you come in the day after tomorrow?”

People, I work in healthcare. And I can tell you from vast experience that the behemoth tanker that is the healthcare system is not noted for its quick response time. It’s practically unheard of for a person to get an almost-immediate appointment in this state with a new and busy physician. Usually requires someone like Albert Schweitzer to refer you. Never happens with a self-referral. Except this time. Needless to say, I was impressed. Miranda continued, through our nearly four-year acquaintance, to respond thusly. I didn’t always need immediate action, but when I did, Miranda would supply it, without my having to explain why. We should seriously clone Miranda.

Today, I explained to Miranda that I was not following my former surgeon, Miranda’s former boss, to her new practice, and that I needed my old file to be faxed to my new surgeon. “We use an outside file-copying service for that,” she told me, “and there’s a small fee. I don’t know how much it is, but I’ll find out for you.” “No problem,” I said.

“Do you mind,” she then said, “if I ask you why you decided to switch doctors?”

“No, not at all.” Whereupon I proceeded to explain that my former surgeon seemed wonderful at my first visit, and that her surgical technique was clean and competent, but that our relationship went downhill after surgery and never recovered. I wasn’t sure why, I said, but she just never really seemed to listen to me or help me sort out my post-treatment issues, and I always ended up feeling like she couldn’t wait to get me out of her office. It was especially hard during my first year after treatment, I explained, because it was a very bad year, and I had a lot of treatment side effects and a few recurrence scares. And we never found our way to any real rapport.

Whenever you divulge some part of the hellish nightmare of cancerland to someone who hasn’t heard it before, you can’t help reliving it emotionally. I managed to keep talking to Miranda, but all the betrayal and panic and helplessness I felt during that first year post-treatment got wedged in my throat.

“Oh, Kathi, I’m so sorry,” Miranda said with solemnity. “That must have been so disappointing for you.”

“It was,” I choked out. “But,” I continued, “I want you to know that I have always appreciated how helpful and kind and conscientious you have been. Thank you for that, Miranda. You really helped make a bad time a lot easier for me.”

“Listen,” she said. “I’m going to copy your file right now and send it out, no charge.”

After a week or two filled with the Pavlovian-like anxiety reflex of gearing up to meet two new breast cancer doctors (the other one was a plastic surgeon with whom I discussed fat grafting) and having to tell them my sorry tale, mixed with the errant asshattery I’ve encountered from people who call themselves my friends and should really know better by now, I did what any resident of cancerland would do after such a conversation. I folded up my cellphone, sat in my car, drank a large Swiss chocolate iced coffee, and cried my eyes out.

So much for equilibrium.

Thus, for anyone out there who is not a cancerland resident or who is not Miranda and thus doesn’t get it, here are a few declarations, in case you blocked them out the first or seventeenth time around, or just thought perhaps I was making it all up.

  1. No, I am not ‘all better.’
  2. Yes, I am still slogging my way through fatigue and low energy three-and-a-half years later. No, it’s not as bad as it was. Now, it’s less like being run over by a freight train and more like being flattened by the occasional stray eighteen-wheeler.
  3. Yes, my concentration just sucks sometimes. And my train of thought sometimes derails unexpectedly. Although I can still usually find my way home.
  4. When #2 or #3 are bad enough, I have to stop what I’m doing. Immediately. Not when it’s convenient for you.
  5. I am working part-time not by choice, but out of necessity due to #2, 3 and 4.
  6. That means I pay all my old bills with 1/5 less income. So if I say I can’t afford it, I can’t afford it. Period.
  7. That also means that saying, ‘Why don’t you just hire someone to [fill in the blank with exertional life/home/yard task] for you?’ is not a helpful suggestion.
  8. That also means that suggesting I should get more physical therapy for my chronic cording/arm/shoulder/chest pain is about as helpful as baying at the moon, because it involves a $500 out-of-pocket deductible and an average $30 co-pay for each visit, which I can’t afford. Besides which, it’s almost pointless, because no matter how much physical therapy is done on me, the problem always comes back.
  9. It always comes back because radiation damage is permanent. P-E-R-M-A-N-E-N-T. Write that down and stop bugging me. If you really give a shit, how about buying me a hot tub?
  10. No, I cannot work ‘some extra time’ to make up for my lost income. I can barely scrape out my part-time hours. That’s P-A-R-T time. See #2, 3, 4, 5 and 8.
  11. When I make plans to hang out with you so we can catch up after not seeing each other for a while, that doesn’t mean it’s okay to bring your secretary/sister-in-law/new boyfriend/other-person-I’ve-never-met-before to tag along without asking me beforehand so that maybe their presence will mean I won’t talk about cancer. Guess again. This is where I live and I’ll talk about whatever I damn well please. And if you don’t like it, don’t make plans with me.
  12. No, I am not cured. I am NED. There’s a difference. Look it up.
  13. No, I will not explain any of this to you again.
  14. The next time you don’t understand something, I suggest you RMFB, which stands for ‘Read my ___-ing blog.’

Ahhh…I feel much better now.

This entry was written by Kathi, posted on Monday, June 25, 2012 at 11:06 pm, filed under Attitude, Life & Mortality, Survivorship and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

45 Responses to “Declaring an Asshattery-Free Zone”

  1. Kathi, I hear you loud and clear. My friends are wonderful in this particular respect, but substitute family and I’m right there with you. I “only” had surgery (bilateral mastectomy with immediate reconstruction – 13 hours under the knife, not including revision), and I guess that because I didn’t need chemo or radiation, I’m supposed to be *done*. My cognition is still shot to hell, but I must have an amazing public face, because it’s surprising how many people are still shocked!

  2. Melissa, my real friends are wonderful, too. But this list has been building up for a while now, and it just seemed that the handful of people it refers to have all crossed my path recently. Felt like a conspiracy.

    Having a good public face and cleaning up well may sometimes be a disadvantage. But heck, what are we supposed to do? Run around looking like dog poo just to prove reality?? Oy.

  3. Kathi, your points are absolutely awesome! I felt better just reading’ ‘um! And you are correct: People not in cancerland do not get it. Dems da down ‘n dirty facts.

    Thanks for expressing what so many of us feel!

  4. You know, Renn, mostly I accept that most folks don’t get it. But every now & then, with certain folks, I just want to slap them upside the head & ask them when they came down with such a chronic case of stupid. Thank goodness for our sisterhood in the blogosphere.

  5. I am so happy I found this site. I am frequently on the verge of screaming, frustration with what this has all done to my mind and body. Whole lot of relief when I find folks who understand and verbalize far better than I do. Thank you so much.

  6. Jewelz, I’m glad you found this site, too. You are always welcome to let rip here. xoxo

  7. Oh Kathi, such a lovely rant, right on target for many us. Sitting here in my living room I’m nodding while reading your words about rehashing the story. Emotionally draining for sure and you’re right, there are those that will never understand. I don’t think they ever can, but luckily for us, we have this amazing corner of the internet where virtual hugs and understanding can be found. You know who your friends are. Love to you, KK.

  8. Thanks, Stacey. Sometimes I feel like if I have to tell any of the story one more time, I’m just going to record it as an mp3 & hit play instead. I’m glad you are one of my friends. xoxo

  9. Kathi,

    Sorry you’ve been through the emotional wringer of late…

    Kind of makes you love this blogging sisterhood even more doesn’t it?

    Sending you love, hugs, understanding, friendship and maybe some Kleenex?

  10. Thanks, Nancy. I was a little surprised by how wearing and truly annoying these last few weeks have been. Yes, thank goodness for our blogosphere.

  11. Kathi,
    Boy can I identify! I think this post is wonderful for so many reasons: It’s reassuring to the rest of us in Cancerland that we’re not alone, and you are a role model for women. You’ve let them know it’s OK to change doctors. We’ve all met women who wouldn’t dream of changing doctors for fear of hurting their feelings! Somehow, they manage to put their life on the back burner. I’m hoping this week is a great week for you!


  12. Thanks, Brenda. Beth Gainer & Nancy’s Point have written about changing docs, too. It can be such a fraught process, even when it’s happening for the best of reasons. I just find it exhausting — even though both my new docs turned out to be wonderful.

    Honestly, you’re going along feeling okay and then, wham-o! The eight hundreth idiotic remark, following the other 799 that you’ve successfully ignored, just gets to you. xoxo

  13. RMFB! Awesome, I love it! I have also changed docs and written about it, but I took the easy way out (if that exists in this scenario?). My husband made all of my appointments, so whenever the old one called (after starting with a new one), he made the call and said, “She’s not coming back, don’t call again.” The only doc I kept was the PS. He actually said he was thrilled to be kept on….but he was the only one who treated me like a real person, so that was not a difficult decision.

  14. Jen, I may have to borrow your husband sometime to make a few calls for me…xoxo!

  15. Whew – that’s a list to remember, and yet I think many of us carry similar points inside ourselves all the time (those who know). I really loved your story of Miranda . . . there is so much opportunity to make life easier when working in that role – helping someone by being prompt, calling them back, arranging the appointments. It’s great to hear of someone who took it seriously and helped you consistently. No wonder you cried afterward (having re-experienced the story), I would have cried too.

    Maybe we should just print out experiences on a card, laminate it, and then pass it to people when they ask questions. Or just tell them your blog URL. That’s a great option too. 🙂

  16. Yes, Catherine, Miranda is a real jewel. People like her make such an incalculable difference in our experience.

    I like the laminated card idea. It’s crossed my mind many times. I also do have business cards with my blog logo & link address on them. I need to hand out many more of them to a few certain people!

  17. Spot ON, Kathi — and I particularly love your analogy of the ‘parallel universe’ of Cancerland which only becomes more bizarre once we are considered ‘done’. Like Melissa above, my treatment also consisted of a bilateral with reconstruction that didn’t require chemo or rads. That is not a badge of honor to me, in fact, at time I’m scared out of my wits that I didn’t receive treatment and pray that my doctors know what they are doing. But it also doesn’t lessen the experience and many women I met along the way were cruel and dismissive because they felt they had it worse than I did and made me feel like some kind of BC fraud.

    I must have missed the memo that having BC was some kind of competition, because as we all know, it isn’t, and nobody wins.

    But I do think the pervasive myths and biggest misconceptions about Cancerland is that you finish your surgery, treatment, or other therapies and you will cross the finish line and Be Done! Birds will sing and life as you knew it will all return to normal like it was all a bad dream.

    That makes me angry. And like you, I am just 3 years out from my initial surgery (4 more recon surgeries followed that only commenced this past November) and I am only now beginning to process many of the feelings that you have so eloquently described.

    And to Melissa’s point, many of us who did not receive treatment also suffer from cognitive issues (not quite as bad as chemo) but doctors are only now beginning to recognize this and feel there is some process to either having cancer or to the diagnosis itself.

    Asshattery, indeed! Blog on, my friend … you speak for so many of us. XO

  18. Thanks, Blonde. I hate it when I hear that other women with BC compare treatment woes and disparage the experiences of the rest of others whom they judge as suffering less than they did. It all sucks. From the moment you hear that diagnosis, it starts to rearrange your brain and your body cells. And research is beginning to demonstrate that these changes are measurable and real, no matter what kind of treatment we have.

    I think maybe the Asshattery-Free Zone needs to go on a teeshirt!!

  19. This is great and terrible Kathi. A great post containing true and creative swearing – RMFB! But terrible that you’re still having to live with the behaviours from others that you describe so precisely. We’ve found the last 5+ years to be a constant clearing hat. Even this week, Sarah’s bought a new address book, as her old one is such a mess now with scribblings out and the still decipherable names of the guilty beneath the scribbles!

    Rage on, sister xx

  20. Rest assured, dear Ronnie, I will rage on. And I need to update my own address book, believe me. xoxo

  21. So glad to see use of the wonderful word ‘asshat’ – but so sorry you’ve encountered so many of late! Wish we could all organise a real-life therapeutic piss up (not sure if that’s an exclusively Australian term but I’m sure the meaning comes through!) – sadly a cyberhug will have to do. xx

  22. LOL, Liz! A real-life piss up sounds wonderful! Sign me up. And I’ll gladly take cyberhugs in the meantime.

  23. Dear Kathi, As Ronnie said, this post is great and terrible. The ‘asshattery’ runs amuck. No doubt about that. But, I am inspired by your willingness to be honest about how things are, not only here on the blog but when you had a chance to explain in person to a health professional why you were dumping your surgeon. It takes guts to do that. Stay cool, friend. — Gayle

  24. Thank you, Gayle. When you receive such an unexpected moment of validation like that, it really brings home all the hurt you’ve been carting around. I was grateful to Miranda for helping me get some much-needed crying out of my system. If there are any moments when I really feel the need to be brave, it’s when I admit to myself how often people have hurt my feelings with their ignorance and I still try to choose not to descend to their level. I know it comes from their own issues & thoughtlessness, but it’s hard not to take it personally. Thank goodness for bitchblogging and sympathetic friends in the blogosphere. xoxo

  25. You’ve given me a new favorite acronym: RMFB! I can’t believe I once wanted radiation so badly. Looking back and hearing what you and others have gone through I feel lucky to have had only surgeries. I think I proved my mom’s theory thT God looks out for idiots. And I have an ignorant question–what is cording?

  26. Jackie, I think one of our Sherpas or blog sisters coined that term ‘RMFB,’ and I remember reading it somewhere, but of course now I can’t remember who it was or where she said it. If she reads this post, maybe she can reveal herself so I can thank her properly! Oh, and cording, BTW, is shorthand for axillary web syndrome, and if you click the link, you’ll find a great write-up on it. It’s a form of damage to the lymphatic vessels that is a cousin — and sometimes a precursor or even an aftermath — of lymphedema. It’s when your radiated, scarred up, inflamed lymph vessels, along your trunk, arm and through your armpit, suddenly turn into piano wire & stick out like bow strings. Not pretty or pleasant. I had a lot of burning in my armpit after radiation. Four days after my last radiation treatment, my armpit swelled up like a tennis ball. That was the start of it. That and all the swelling I still had in my mutilated breast. Oy. I get it to go away for awhile, but it tends to recur. The Gift that Keeps on Giving.

  27. Spec.Tac.U.Lar.

    Not the crying part or the fact that (some) people (the asshats) have to be told the same crap 17HUNDRED times… but the rant…. Pitch Perfect …. Super Snark.

    I love you, sistah….. You really truly honestly rock my world…

    Love Love Love….

  28. Back at you, AnneMarie. And, you know, it was a good cry, much needed, and for the best of reasons, because I was so moved by that woman’s kindness. I love you, too.

  29. Kathi, I drove by the Roxbury VAH, and there’s a huge sign “June is PTSD awareness month” and I really wished I’d taken a picture under that sign.
    As I look for new work, I’m more aware of my limitations and my refusal to work to exhaustion, and the lack of understanding that abounds.

    PTSD awareness month is year round for me.

  30. Judy, I’ve been thinking of you a lot lately. Ultimately, we are the only ones who can truly know our limitations and can figure out how to respect them. We hope that we can adequately inform others of our how to respect them as well, but yes, ignorance and lack of understanding does, sadly, abound. Love and hugs to you, my friend.

  31. Your post is great Kathi, and it makes me realize I’m not crazy or lazy! It sums up my life perfectly, except, I was extremely lucky with my doctors, wouldn’t trade any of them!

  32. Thanks, Linda. No, you are certainly not lazy or crazy. And having great doctors who get it is a godsend.

  33. Kathi,

    Perfectly snarkilicious and an acronym RMFB that I would love to tell people. I totally get it, friend. Those not in cancerland can often be insensitive and expect us to be “over” it. Physically, psychologically, emotionally, spiritually — cancer and its aftermath drain us. I’ve had insensitive comments, too, from people who were near and dear to my heart. Not so near and not so dear anymore.

    Keep up the snark. Let’s ban Asshattery!

    — Beth

  34. Thanks, Beth. Yes, let’s ban all Asshattery! In the meantime, here’s an RMFB teeshirt: Read My F__-ing Blog teeshirt

  35. Kathi,
    I love you. Thank you. I’m here for you.
    Class Dismissed! xo

  36. Amen, sistah! I’m ready for the ban!!!!

  37. I can so relate to everything you say, Kathi. People can be so dang clueless, it’s pathetic. You’ve given me more ammunition to use against those who just don’t get it. May we all have more Mirandas in our lives, and fewer asshats. xoxo

  38. Preach it, sister! The world needs to hear it, especially the asshats out there!

  39. Oh boy, do I get it! A “good” friend recently said something about me having kids. How thoughtless. Has she forgotten all those crying calls from me during chemo about my fertility? Asshattery. Ugh.

  40. Thanks, sistahs!! All together now: “Give me an R, give me an M, give me an F and B! What do you got?? Down with Asshattery!!”

  41. Couldn’t get the t-shirt link to work – but regardless, I know that I want one!!!

  42. Liz, the shirt is rated as a PG-13!! LOL. Go to the store page, (Fun Links tab at top here) then scroll down the left sidebar & click ‘Content Filter’ & change to ‘moderate’ & click that you’re over 13!! Then you’ll be able to find it.

  43. After my week of hell I understand where your coming from.. If only people took the time to understand the true journey with cancer.. xxx

  44. A-f-men!!!!! Duly noted this first day of September from my rubber-f-room. Still hoping 1)the primal scream therapy works, or 2) my patience materializes, like some deity descending from the heavens to sort my life, or 3) the stress stays since it is holding me together; we got a codependent thing happenin, or 4) someone buys me a really big cocktail.
    Thanks for spelling it out. Boot to the head to you! (It just reminds you shit could get worse.)

  45. LOL, Suecer. Yes, I try to tell myself that it could always get worse!! xo

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