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.”
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.
- No, I am not ‘all better.’
- 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.
- Yes, my concentration just sucks sometimes. And my train of thought sometimes derails unexpectedly. Although I can still usually find my way home.
- When #2 or #3 are bad enough, I have to stop what I’m doing. Immediately. Not when it’s convenient for you.
- I am working part-time not by choice, but out of necessity due to #2, 3 and 4.
- 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.
- 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.
- 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.
- 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?
- 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.
- 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.
- No, I am not cured. I am NED. There’s a difference. Look it up.
- No, I will not explain any of this to you again.
- 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.