love is health
Before diving into the topic at hand, I want to make it abundantly clear I am doing very well, still living life regularly, and am still cancer-free. So much has happened since my last post (has it really been 6 months?), but a lot has been on my mind regarding derby, treatment, and life. So hear it from me - I am healthy and well. That said, there will be all sorts of vulnerability up in this blog, so bear with me. Let's dive in, shall we? See ya later, roller derby. I'm off to find myself... I had my last roller derby game in September at division 1 playoffs. I decided to stop playing to get a better sense of balance and structure in my life. I was feeling pretty burnt out after a year of sprinting. See, being a post-treatment teammate, wife, parental figure, and Infusionite (aka employee) was tough to handle. I was missing practices, commitments at home, results at work, and all the details in between. I couldn't be the person I wanted (or needed) to be while stretching myself thin. I concluded that ending my skating career (thereby freeing up time) would help me find the wholeness and balance I was missing. I'm terrible at idioms. What's that saying about doors closing and windows? Is that the same as Parkinson's law? Without derby, I threw myself at being a better person. That 1/2 marathon I didn't train for? DONE ANYWAY. That 50 mile bike ride I signed up for on a whim? PWNED. After about 2 weeks of no longer sprinting at life, I was on my way to my next adventure, and picking up speed. Those extra hours now available for more family time? FILLED WITH MORE STUFF TO DO!!! I'm going to train for a triathlon! And play indoor soccer! And spend more time at the office!! Do all the things!! Wait, what? Wasn't the point of quitting roller derby to find balance, not throw myself at other things that filled my time? My brain's response: "No time to think about it - I have to run to my next meeting! And plan for the holidays! And figure out what the hell I am doing with my life! Because life is short, and can end at any moment, and a new tumor can pop up at any time, so I better do what I love RIGHT NOW. THIS VERY MOMENT!!! I know... I'll start a roller derby BUSINESS!" OY. As you can imagine, this kind of thinking, sprinting, and driving is exhausting. But what did I do? I started a roller derby business. I dove head first into getting it started, all the while completely detaching from my reasons for leaving roller derby in the first place - to find wholeness and balance. The Struggle to find the "thing" Meanwhile, that feeling of struggle never quite went away. There was a 2 week period when I felt calm, present, and complete, but that quickly dissipate by the pace of "YES". Yes to new adventures. Yes to new work. Yes to business. Yes, yes, yes. I got lost in the current of a stream of ideas, theories, and activities, that I failed to accomplish what I wanted. Sometimes I can't help but feel like leaving roller derby was a terrible mistake, reinforced by the notion that playing derby IS when I felt whole and complete pre-treatment. Derby was my "thing". It was the thing that regulated my diet. It was the thing that made exercise easy. It was the thing that helped me manage my ADD. It was the thing that got me through treatment. In many ways, I was a better person when I played. Yet I attributed my faults - my list of "not enoughs" - to playing roller derby. Something seems missing from this. How can it be that the "thing" that made me feel so alive was also the "thing" that caused so much disconnection from other parts of life? Is there something else at play I am overlooking? Why can't I focus? No matter how many books I read, planners I purchase, or calendars I enlist to help me get organized and live the life I want to life - why can't I just get it all done? Is my ADD out of control simply because I haven't had a consistent exercise schedule like I used to? Was the time spent at derby really the issue, or my tendency to say "yes" to every good idea that comes my way? Was this a time management thing? An over-commitment thing? A lack of focus thing? Is there something fundamentally broken in the way I plan - in my executive thinking? Wading in struggle for so long, I've reached the point of believing that something is wrong. For someone who used to so easily float between 5 year planning and daily execution, I'm having a harder than usual time staying focused on the task at hand. And although focus and follow through have always been challenging for me, I've never been so scattered and inconsistent as I am now. Something's gotta give. Surprise side effects, & the perfect storm I'm an avid follower of Stupid Cancer on facebook. They post interesting content about being a young cancer survivor, and I find the articles and discussions super interesting. They recently shared a post about chemobrain, the cognitive fog you experience while going through treatment. I already knew about chemobrain, but had never stopped to consider some of the long term side effects of chemo on thinking and memory. The article indicated that hormonal status may also have implications on memory/ focus. Going down an internet rabbit hole, I started wondering about the effects of tamoxifen on memory. To my surprise and disappointment, It turns out tamoxifen - the pill I have to take for 4 more years - impairs executive function in the brain. "Exposure to clinically relevant levels of tamoxifen for 48 hours killed more than 75 percent of [specialized nerve/ brain] cells." WHY THE FUCK DIDN'T SOMEONE TELL ME THIS IS A THING??? How is it that such a significant side effect went without discussion before I started taking this pill? Why am I only finding this out a year later - a year of feeling like I'm somehow cognitively corrupted?! I have felt so frustrated, exhausted, and frustrated (yes it merits repeating) that I couldn't just stay focused - that I couldn't think how I wanted/ needed to think. I often have to duplicate my planning efforts, because I need to be doubly-sure I am taking everything into consideration. After a year, the picture is only now becoming clear: Adult ADD - roller derby + tamoxifen x velocity of life = system failure. This is the perfect recipe for focus disaster. I don't have derby helping me focus by keeping me in a diet & exercise routine as I had once before. My brain, quite literally, is being impaired by a medication that is supposed to decrease my risk of recurrence. All the while, and without intention, I have piled on heaps of things I have said yes to, because I don't have the clarity of mind to recognize what I am committing to as I commit to things. I'm caught in a cycle - I can't focus because I don't have structure, and I don't have structure because I can't focus. I'm not a blamey person, though I can't help but feel like I should have been prepared for this by a medical professional. I wish someone would have told me "you may struggle with thinking and memory, and given your ADD, you're already at risk for cognitive impairments". On the flip side, I'm grateful to know that my theory of being cognitively "off" isn't just imagined - that what I am experiencing is a "thing" - is THE Thing that I have been getting snagged on for the past year. Getting to the point - Allopathic or naturopathic? This begs the question of whether to continue being on tamoxifen, and return to roller derby. I'm feeling skeptical and apprehensive of continuing to go down an allopathic treatment plan, considering all the side effects and lack of information that persist. While I am told my statistical chances of metastatic recurrence without tamoxifen are 20%, that number is based on research of women who are not a reflection of me. (Most research trial participants for breast cancer are aged 40+, often have other health issues, and eating the Standard American Diet). Show me a statistic based on women in their 30s who are active, healthy, and eating clean - and I will more readily swallow that statistical pill. Until then - I doubt my risk for recurrence is 20%. Hell, even if it was - that means I have an 80% chance living life normally. I like those odds. I like those odds more than I like being cognitively foggy. There is so much that goes into this decision. Many of you know that Luke and I have (finally) determined we would like to have children of our own. Being on tamoxifen postpones and compromises our ability to procreate. Being off tamoxifen would mean needing to take additional precautions to reduce the likelihood of recurrence, especially in the next 3 years when the risk is highest. This means eliminating sugar, and eating an alkaline diet. I'd even consider going vegan (which will undoubtedly be challenging). All of these considerations boil down to this: Am I willing to make the lifestyle changes needed so I can regain my cognitive function, and reduce risk? Or would I rather take a pill to reduce risk, and a pill for cognitive function? An even better question: How much sense does it make to undergo a massive lifestyle shift while in the middle of 3 large commitments I am already struggling with? And the biggest question: How much can I trust my thinking and planning as I sort all of this out? Is a naturo-onco-psychopharmacologist too much to ask for? For being an independent person, I have never so badly wanted guidance from someone else to help me navigate post-treatment life. The lack of information and research is so painfully clear. I can't seem to find anything scientific and relevant that discusses the effects of tamoxifen on adult young women with ADD. Yet - all I want is someone who understands this unique intersection to help me sort through these experiences so I can move forward. In the meantime - I have no answers. I'm relying on sheer grit and tenacity to wage through the struggle. Will I go back to roller derby? Who knows. Will I keep taking tamoxifen? Well, I did this morning. Tomorrow is another day. Will I get everything done that I need? I sure hope so. It's all another challenge to be faced with optimism. I'm hoping for the best, and working to prevent the worst. Wish me luck.
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