Tuesday, February 12, 2013

On The Importance Of Being Disruptive

Excellent quote from ePatient Advocate, Regina Holliday, from her post about her petition to Hallmark to create hospice cards. 

She is being noticed. 

Forbes has picked up the story, and the petition is gaining signatures.

Innovation requires this kind of intelligent courage too.

I have learned as an activist, sometimes you must be disruptive to be noticed.  Only when you are noticed can you be heard. 
~Regina Holliday

Monday, February 11, 2013

Mademoiselle X and the Pre-Op

Recently, a young woman I've been mentoring through her Breast Cancer journey -- I'll call her Mademoiselle X -- asked me to help her prepare for her post-double mastectomy revision surgery.

Mademoiselle X's initial double mastectomy surgeries did not leave her with a good result. Thankfully, nothing "went wrong" from a health perspective... she healed very well, there were no infections or complications... but for the fact that the implants she received seemed like they had been intended for someone requesting a drastic (and I mean DRASTIC) and intentionally un-natural looking breast augmentation.

After the usual insanity and extreme distress of the diagnosis, the chemo, the fears of infertility due to said chemo, and the ordeals of her first two surgeries, the last thing Mademoiselle X wanted and needed was to have to revisit any and all of this as a once again vulnerable patient, dependent on surgeons to leave her with results she would have to live with for the rest of her life. But, given the situation, a revision was what she desperately needed.

Before her pre-op, we discussed her fears, needs, wants, expectations. We also brainstormed questions and tactics to ensure she would get the information she needed from the surgeon, all the while getting said surgeon to hear and understand exactly what she did and did not want.

I coached her to talk about precise, specific details, and to be explicit about her needs. This, no matter how polished, professional, educated, strong, or valiant you may be, is no easy task, especially when you are going through this for the nth time, and your new surgeon is... well... a Brilliant Surgeon (i.e., super achiever, technical guru, tending towards uber-human). Hence our coaching sessions.

I am sharing here our exchange of texts immediately following her pre-op with the surgeon:
Mademoiselle X: Doc scared the crap out of me, talking about 6-8 percent rate of infection where he'd have to remove implant altogether and I could have flat chest and droopy skin for 3 months before another surgery with loads of scarring... like the worst of the worst Scar Project pics you've seen. I'm so desperate to be smaller, but now I'm scared.
Me: They always have to tell you the scary side effects and scare the crap out of you. 6-8% infection rate also means 94-92% NON infection rate. You don't smoke, drink abusively, or have diabetes... you are healthy and will have to be scrupulous about wound care etc... which you will be anyway. I don't want you to think I am being dismissive... just trying to give you some perspective. Sorry you have to go there.  
This brought me straight back to my initial visit with my oncologist after my first breast cancer diagnosis. She was recommending chemo for me, but had to give me the list of potential side effects. One of them was LEUKEMIA. What? To kill the cancer inside my body, you are prescribing a drug that could possibly cause another, lethal, cancer? How am I supposed to breathe after hearing that, let alone continue with my life?

The toxic levels of anxiety we experience as cancer patients leave our nerves raw and exposed. It takes time and diligence to heal that frazzled mess, and in the case of Mademoiselle X., the last thing she could have understood rationally in the moment was what the risk of that side effect really, truly was, given her particular circumstances.

I know there's a responsibility to disclose these potential side effects, but we patients need to learn to interpret them and gain some perspective on what they really mean. No easy task when you are in the throes of your cancer journey, but a crucial one nonetheless. This would be a useful tip for caregivers and loved ones too.