More Collaborative Medicine In Action, #BCSM Edition, Part Two.

It began with a post I caught on Facebook:

Tweets ensued, including:

@itsthebunk - you asked for it! Endocrine Therapy Side Effects - Your Input Requested! bcsmcommunity.org/endocrine-ther… #bcsm
— Dr. Deanna Attai (@DrAttai) April 13, 2013

And now, on the #BCSM website, a second opportunity for patients to contribute to the advancement of medical knowledge (I wrote about the first one here). Yes, that does sound pretty grandiose! What I mean is this: when you are experiencing the type of side effects a drug like Tamoxifen can induce, you can discuss them with your oncologist, you can vent about them at support groups, you can blog and tweet about them ad nauseam. That's all fine and dandy....

But to be able to give that information to a physician who not only cares deeply, but who is planning to use that information in a presentation she is giving at a medical meeting.... well, that does get you thinking pretty big.

I continue to be excited and inspired by what we can accomplish when we harness technology to facilitate change.

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.

Coping Lifeline: My Treatment Notebooks

One of the things I did to keep some kind of sanity was to dedicate a series of notebooks to my treatment and healing process. On each notebook's cover I'd write the time spanned within. Anything to help me stay organized.

I used the notebook to take any and all notes before, during and after medical appointments, and if I happened to write a note on some other piece of paper, I'd tape it on the appropriate page to keep everything together....

...I'd also use it to track the cornucopia of medications you end up taking when going through chemo and after surgery... each one has its own lifecycle, so I'd end up creating a list with open checkboxes that I'd fill in once each drug was taken.

This was very handy when trying to stick to the prescribed schedule for certain drugs:  I learned the very hard way that if you stuck to the schedule you could gain more power over a given side effect, and when that side effect is intense pain or nausea you definitely want to do everything you can to maximize the "helper" meds. Tracking the meds was also helpful when I needed to talk with my MDs and/or Nurses about side effects: I'd be able to give them the info they needed to help me.

Another thing the notebook was great for was tracking phone calls, messages and conversations with my medical team. If I had a question about a side effect between two chemo cycles, I'd write it down, call the Doc's office and if I had to leave a voicemail, I'd note it in my notebook. Then, when they called back I'd know why they were calling me! (If you've gone through chemo, you've probably had at least one or two episodes of "chemo brain," yes?!)
I would also write notes to myself as I did in one of the pictures I attached -- "Feeling NAUSEOUS! ... I was not eating anything throughout the chemo. NEXT TIME MUST snack throughout!" This helped me learn from my mistakes and improve my experience as best as possible.

Finally, as I write this, I'm glad I did this and kept the notebooks, as I'm able to refer to them and share some tips with anyone whom (I think it's "whom," not "who"!) this might help.