love is health
At the threshold4/14/2020 It is surgery day. I am grateful to have the surgery I need in the midst of a pandemic, while also sad to have to do this alone for the same reason. I learned from my first diagnosis that surgery is really only the start of the road ahead.
While I am very ready for this and so grateful for the pace at which we have been able to move from first appointment to surgery (2 weeks), I am also still grieving and processing everything, because it is all happening so fast. When I wake up, I will know whether or not it's in my lymph nodes, which also means I will know if chemo is part of the plan. I usually love speed. And right now, all my mind wants is slowness and quiet space.
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Update of what's to come4/11/2020 Surgery is tentative scheduled for Tuesday. I'm using this weekend to celebrate my body as much as I can, in anticipation that I will lose some functionality. In addition to having the new cancer removed, I will also have some more lymph nodes taken, and the rest will be radiated.
I will have more physical limitations as a long term side effect of treatment. The first time I went through this, I didn't understand the gravity of having permanent changes to my body. I kept thinking of treatment as an acute and fleeting process, rather than a life-changing endeavor. More than anything I just wanted to get through it and get back to living life, without understanding how different life would be on the other side. This time is different. I have the earned perspective of someone living with long term side effects, so I am far more cautious and fearful of what's to come. There is a 30% chance I will experience lymphedema, and there is nothing I can do to prevent it. The tissue in my chest and underarm will permanently contract due to radiation. The idea of any physical symmetry feels so far out of reach. And, I feel like I have no choice but to proceed. This weekend is one of both gratitude and grieving. I am so grateful for the functionality I currently have - the ability to hold my children with both my arms; to do pushups, handstands, and reach for things above my head; to swing my arms wildly as I dance with my tiny family. I am also grieving the loss of these things, recognizing the body and function I have today won't ever be the same after Tuesday. It was the familiarity of it all which made it all the more bizarre. It's like I was reliving spring of 2013 all over again, this time with a much happier outcome, but still no solid answers.
For nearly 2 weeks, I've been experiencing some pain in my healthy, right breast. Originally not concerned by it, I thought I would let it pass. After much whining and concern about it laying in bed at night, (much like 2013), Luke urged me to get it checked out. Days passed, then a whole week, and nothing changed. Much like in 2013 after noticing that my symptoms were persistent, it was time to take action. However, this is where the departure from the past emerges. Instead of assuming worst case scenario last (like you would with a healthy, active 30 year old), it felt like worst care scenario was assumed first. After a brief chat with my care manager, she wanted me to come into the clinic asap, or first thing the next morning, at the very latest. The urgency didn't match how I felt, which left me feeling a bit nervous. I was otherwise very healthy, active, and feeling great. So why the urgency? Why couldn't this wait for an appointment at a later date? I called the evening nurse on call to see if I could get out of having to come in the next morning - no dice. I called again this morning explaining to my care manager that I feel otherwise happy, normal, active, and healthy. No sign of infection, no lumps or bumps. "Given your age, well, we'd rather be safe than sorry". The annoying truth about being a young cancer survivor is that our risk for recurrence or new tumors is higher than the average cancer population. It will always be something we worry about, even when all feels and seems great. It's certainly something our medical providers worry about, knowing just how aggressive cancers are in younger populations. I felt myself having the very same thoughts I had in 2013. "What are the odds that something is seriously wrong? I mean, I am happy, healthy, and active. The likelihood of getting struck by lightning twice can't possibly merit this urgency". Yet to the clinic I went. On the way there, I received a call from a different nurse, also urging me to get to the clinic as soon as I could. After gently trying to convince my nurse this was no big deal (and failing, btw) I was back in my clinic - like being at old stomping grounds. The urgency of the messaging was starting to concern me. After an examination and diagnostic mammogram, I was reassured that things are looking healthy and normal. Of course you can imagine the relief in hearing this - confirmation of what I already felt to be true. While I still don't know why my breast has been feeling "off", I am glad to know I am well. While irritated by the urgency and alarming nature of it all (after all, I cleared a morning of interviews and an afternoon of meetings for this) I can lay in bed tonight without the fear of "what if". I would take a day of inconvenience over weeks of a heavy heart, any day. Yesterday I had my 2nd implant exchange surgery. I was mildly nervous pre-surgery, (which, apparently is the worst time to ask the anesthesiologist a laundry list of questions about what general anesthesia does to your brain & body. My curiosity couldn't help it!). After a long, nervous goodbye to my mom and Luke, I was wheeled in, and slid onto the table. The last thing I remembered was Dr. Desvigne holding my hand and telling me "sweet dreams" before I went under. I am glad to report that I am doing quite well, and haven't needed any pain medication at all, not even to sleep well through the night!
I have mentioned before, since being on hormone therapy, I have gained 25 lbs, rendering my chest asymmetrical. My natural breast grew as I grew, while my neo-breast retained the same size - an appendage of a more slender version of me. Padded bras and under-wires can only do so much, and in the fall Dr. Desvigne suggested it was time to do something about it. At the time, I postponed the decision until I knew I couldn't kick the baggage. Although I am happy with my decision, I know asymmetry is something I will always battle. So long as my weight fluctuates, my natural breast will wax and wane, juxtaposed to my neo-breast. Once again, these are the things you lament not knowing going into treatment. Ever present is that aesthetic-minded whisper that I should have removed both of my breasts, if not simply to guarantee optimal symmetry over time. Nevertheless, my overwhelming decisiveness to keep my healthy breast constantly overrides that fleeting voice, aesthetics be damned. You may have taken one of them, but I'll be damned if you took both of them. I win. You lose. My life goes on. 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. A birthday of sorts: 1 year later8/13/2014 Part 1: The reality of life post treatment
Tomorrow marks the anniversary of my mastectomy. It's amazing how time sneaks through us. Despite the last 12 months, my life generally looks the same as before: awesome husband, house, work, roller derby. However looking deeper, I see I failed to welcome a new version of myself, and it's about time I come to accept this new skin. I assumed when treatment was over, I would live happily every after, no longer having to deal with side effects, unexpected symptoms, and physical changes. I imagined my life would be just like it was pre-diagnosis - that my body would rebound back to its pre-cancer state. I didn't know my metabolism would slow so quickly, rendering my chest asymmetrical. I didn't know my knees would ache all the time, or that my skin would bruise so easily. The worst of it - I didn't know I would still be dealing with intense hot flashes months after treatment finished. They interrupt sleep, meals, activities. They come on like a fiery freight train, unstoppable, and hardly mitigated. My body feels alien to my spirit at times, and I fight to remember I am not my body. It's difficult to look into the mirror and see a much older, off kilter version of myself. While I have always embraced and looked forward to aging, these aren't exactly the terms I anticipated. I've had 12 months of a physical transformation I was not expecting, impacting my identity in ways I never imagined. The person I examine in the mirror seems more like a reflection of me at 41 rather than 31. And although I have chosen to not have children, I grieve my fertility has disappeared without choice or trace. I didn't even know that was a risk. Part 2: Reconciliation & Loving What Is There is guilt in grieving. Here I am, a year after diagnosis, alive and well. Perhaps I should only be grateful (?) That's nonetheless a hard pill to swallow at 3am, waking up in sweat-drenched sheets. On occasion I'll lament my hot flashes, only to feel isolated by the recognition others can't empathize. I'm quick to stifle my complaints under the self-governed pressure of "it's been 8 months - get over it". And while I know how totally trivial and silly this sounds in the grand scheme of things - I'm still learning how to have curly hair, especially during monsoon season. I feel like I look like this. You can probably tell I haven't been very compassionate to me while I heal. So eager to get back to "normal" me, I failed to welcome and embrace new me. New me doesn't get hungry 3 times/ day. New me has squeaky knees while doing squats. New me needs naps some days, or risks driving home drowsy. I'm a little softer, a lot sweatier, and shorter of breath. but... New me also has awesome hair that looks amazing after falling asleep with it wet. New me can still nail a 25+ point power jam. New me has won MVP jammer twice this year, captained my team through an undefeated year, is registered for a half marathon in November, and on my way to a half Ironman a year from now. (These accomplishments aren't without assistance. I couldn't have done any of this without luke and my teams. However, that doesn't make them trivial.) Looking more closely, tomorrow is a birthday of sorts - the birth of a grittier, stronger, healthier version of me. Having done some research when I was first diagnosed, I found it difficult to find information/ blogs/ anecdote of people who successfully balanced roller derby with cancer treatment. Therefore, here are some things I learned in my experience that I hope you find helpful. Its worth noting that everyone's experience with cancer is completely difference. What worked for me may not be appropriate for you. Please consult with your doctor before following any of this advice.
I. If you go through surgery, abide by the doctor's post surgery orders. No activity means no activity. I was advised to take 6 weeks off of all activity after my mastectomy and reconstructive surgeries. Having internal sutures, this was to prevent any of them from tearing, causing internal bleeding. If your doctor says "NO ACTIVITY", listen. Here are some ideas for your post-surgery down time:
II. Ensure your doctors understand the full implications of playing roller derby. Not everyone is familiar with the sport, or the level of activity/ contact involved. You will need to explain your sport and activity to them, and remind them several times of what you do. Be sure your doctors understand the following:
III. Get clearance from your doctors, in writing, when they believe you are ready to return to skating and full contact. This will help your league and teammates welcome you back to the track when the time is ready. IV. Communicate with your team & coaches often.
V. If you go through chemotherapy, this is a list of tips for you.
VI. Have patience. Your derby/ workout schedule won't look pretty. You may have been used to working out and going to practice 3-6 days a week. That will not be your normal during treatment. There will be many times that risk of infection is high, or that you don't have energy, or that you are dealing with side effects. IT'S OKAY. This is normal, and expected. You aren't letting anyone down by not going to practice. However, you will let your body down by working harder than needed. Have patience. The best way to get through your treatment period is by acknowledging your (temporary) limitations. This will help you get through them. This isn't easy, especially for those of us (myself included) who hate to acknowledge weakness. I always struggled with follow through. In the 5th grade, I rallied my classmates to create a comic book with me, teaching everyone the proper way to use colored pencils and fill white space. After 2 weeks I abandoned my leadership post, bored with the idea, and frustrated by my classmates' inability to read my mind and do what I "knew was right". The number of tasks I have started and fled from is countless. Wether I lacked focus, discipline, or grit, my struggle for completion is a life theme. I'm not a closer - I'm a creator.
So when I returned to the track last night for my first bout in 6 months - after my mastectomy, breast reconstruction, chemotherapy, a new job, sudden parenthood, and while in the midst of menopause at 30 - I conquered a lifetime of incompletion. I am reminded of this study, citing many women experience personal growth after a cancer diagnosis. However, I didn't return to the track alone. The decision to remain on our travel team and be captain through treatment was difficult. Several times I would call my co-captain Jill in a frenzy, frantic with the belief I couldn't do it - I couldn't come back to my sport, my team, my source of joy, because life had other plans for me. At one point shortly after diagnosis, I had stepped down (for 2 weeks), assuming treatment would overrun my life (which it did), and I wouldn't feel up for skating (which was true at times.) But for some reason I can't quite explain, perhaps madness, maybe stubbornness, I remained committed to my team. Even after my 2 week hiatus, they selected me as their captain for a second term, knowing I'd be going through cancer treatment in the fall. I was, and still am, completely taken aback and humbled by their faith in me. Their belief carried me through treatment, through rehabilitation, and back to the track last night. The unwavering support I have received from my teammates and derby community took me back to the gym, on skates, and leading the team again. I often questioned whether I could continue skating and serving as captain. Last night's victory in Tucson put that to rest. I'm immensely proud of my teammates. Win or lose - their character and integrity remain consistent, supportive, and familial. I say with confidence, without them - without being part of this team, with these teammates, at this time, I would have retired in June and allowed breast cancer to end my skating career. Yet here I am, at the beginning of another travel season, humbly at the helm of this intimate band of inmates. This is all to say: Thank you, Terrors. Without you, I wouldn't have returned to bouting last night. Your faith in me was like an assist through a rough pack. Emergence12/15/2013 It's day 11 after my final chemotherapy cycle. I am officially out of my nadir - meaning my cell count is replenishing. Things will only get better. I am feeling like a beast after a 50+ hour work week and an un-eventful nadir. I feel like I am winning at life right now. My spirit hasn't felt this good since I was last on skates.
Something in me clicked today. While poring through pictures of my league's last game of the season, an overwhelming jealousy bubbled in my chest. I need to get back to the track. Every derby desire was re-awakened, previously stifled by hospital stays, surgical masks, side effects, and the hangover-like lethargy that comes post treatment. The fog is clearing, and my focus is sharpening on rebuilding my body. I will be a better machine, because I have proven to myself that I can get through a multitude of challenges without crumbling. I am anti-fragile. For the first time in months, my body is itching to run. To be outside. To move quickly, swiftly, and powerfully. All consideration for caution and delicacy are dissipating. I need to get back to the track. I need to feel my body colliding against someone else's until they drop to the floor. I need that nervous, frenetic twitch that lies behind the jammer line, that quiver of anticipation of the whistle to blow. Tomorrow I will go to the gym for the first time since my mastectomy in August. Beast mode is engaged. Until then - don't be surprised if you see me running near/ at Phoenix College today. It's go time. Health Update 11/2211/22/2013 First, thank you all again for your love/ support. I'm a pretty sentimental and social person. The flowers, encouragement, positive thoughts, and cheerleading mean a lot to me. Coming from a large family, I rely on others to see me through rough patches, so thank you for seeing me through!
I've been in the hospital since Wednesday night. Like The Great Tooth Debacle of 2013, I got a post-chemo fever indicating an infection. The difference this time is that my immunity indicators (specific white blood cell levels) were so low that I needed to be isolated until they come back to a more defensible level. To be clear - the infection doesn't cause the immunity problem - the immunity problem allows the infection. In other words - the fever was a sign that my immune system was failing. While I am generally pretty chipper and upbeat (and still am), things got a little scarier lately with having to be hospitalized. And while I know with absolute certainty my immune system will recover (it always does - this is just part of the process), there is something unnerving about knowing that there is very little defending my body from infection. If I caught something dangerous, there's not much my body could do about it. Right now, my poor little army (aka my white blood cells) are doing their damnest just to kick a flu. A stupid, silly, flu virus. I know I will be okay. In the interim - antibiotics and tamiflu keep my little army afloat, and keep other germs at bay. I will be at my treatment center/ hospital until my white blood cell counts reach a certain level again. That is unfortunately unpredictable, and comes with many a needle poke to determine. For folks in Phoenix, if you want to come visit, please do! Be forewarned - you will have to wear a face mask while around me, and you cannot visit if you were/ are recently sick. Text me for the address. U AboutSnapshots in time across a span of years managing breast cancer Archives
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