Sooo... I'm not not writing because I don't have anything to say. I'm not writing because I don't know how to say stuff anymore. Specifically - I have a hard time saying stuff in the written word. This is frustrating to me because writing has always been the best way for me to get the extra junk out of my head. Maybe I need to practice more? Maybe any smarts leftover from chemo have been sucked out of me by the time spent watching America's Next Top Model? Probably.
Clearly, I just need to practice writing.
So ... I did Annapurna and then I went to Peru to climb mountains with 21 teenagers (11 girls from low-income areas of Florida and 10 from a village outside of Cusco, Peru), and then I went to Yosemite to hike and stuff and then I went to Colorado to emcee the Women's Leadership and Adventure Summit, and then I wen to Wisconsin to do the Racine 1/2 Ironman. All of it was awesome.
Do you see why I'm not writing much?
But really... I'm not writing because I struggle with how much truth to tell here (or anywhere). I want to be totally honest and unafraid of offending anyone or hurting anyone's feelings (which is totally stupid since NOBODY reads this blog anymore... which I kinda LOVE!) I don't want to be nego-nancy, but things are rough! Recovery is a rough process. (And - I swear to God, I am about to delete that last sentence because I realize there are people out there who will never recover and I should be GRATEFUL for this opportunity to recover... AGHHHHH. Sorry, I'm not deleting the last sentence. And I'm sorry to those of you who don't get to recover. I truly am. And I'm sorry to those that have lost someone who didn't get to recover. My heart breaks because of all of it and then I feel guilty for saying that it's rough but I honestly feel even more guilty for the way I feel. But I really am so grateful for the ability to run and ride my bike... Um... Hello, super freak! Do you see why I'm struggling???)
That being said - I refuse to write a blog post about all the things that are wrong. Which is why I haven't written.
I have been having really awful stomach cramps that cannot be explained. Like... seriously debilitating. So debilitating that they stopped me from mountain biking on a mountain biking trip! So debilitating that I started having migraines. Like, the kind of migraines where I can't see. I had two or three in a span of two or three days and that has never ever happened before so I called my oncologist and left a message... "I am having migraines and I just wanted to make sure you guys don't care about that."
So they care about that stuff. The big scary thing about breast cancer is recurrence... And my biggest fear is metastasis in the brain. Like... Seriously scares the shit out of me. So You can imagine what my reaction was when the oncologist called back and ordered me to get an MRI of my brain "stat." I had about 15 hours (cause he called me at 7 pm) between the time he called and the time I had my MRI. I had 15 hours to contemplate all of the things that come with the fear of mets to the brain.
What will I do if I have cancer in my brain? Will I have treatment? Or will I spend the last weeks/months/year(s) of my life living as fully as possible without the complications of chemo and radiation? What will I do with that time? Who will I see? What will my message be? Where willI go? What do I want to leave behind?
What do I want my legacy to be? Without a husband and children to leave a legacy with... I am on my own in creating the message I want to leave on this planet.
A lot went through my head. (Duh.)
I decided that I would see my family. Specifically, my nieces and nephews. I would spend my time with them. I would make sure they know that they are the most special of all humans on this planet. I would tell them to be secure in their amazing, beautiful selves. I would tell them that even their faults are special and specific to them. I would tell them not to be afraid. Of anything. I would tell them to travel. To connect with as many people as they could. I would tell them to to do anything and everything that makes them light up. Time is short. LIGHT UP.
If I had enough time after communicating this message to my nieces and nephews, siblings, and parents, I would move on to my closest friends, then friends, then distant friends, then acquaintances and then perfect strangers.
What a gift, right? To have this ability (and associated fear) to contemplate my final message...
Well, to me it's a pretty rad gift. Mostly since I now know I don't have cancer growing in my brain. (Hi, big, fat, giant relief.)
But my message shouldn't change. I found it really interesting that in contemplating what I would do with the final days/weeks/months/year(s) of my life losing the 20 chemo lbs never even crossed my mind. Neither did racing another race (although climbing mountains was at the top of my list), or setting a PR on the bike, or ... Most of the things I spend most of my time thinking about.
So I'm changing some things. Working on the balance of being a responsible, contributing member of society with the perspective of understanding what (at this point, anyway) I want my legacy to be.
Also, I want to be more authentic here. I want to be less afraid of offending people (so please know, it's never my intention to offend anyone), I want to be secure in my amazing, beautiful self and I want to be more forward in communicating the shit that's rolling around in my coconut... Even (and especially) if no one's reading it.
Wednesday, February 26, 2014
I'm gonna try to make this quick...
After 38 hours, a quick stop in Shanghai, a switch of airports there that resulted in a fair bit of heartburn, less sleep than I expected, and no visit to the actual city, a couple of bumpy flights, and countless interactions with perfect strangers (my favorite!) - I arrived about two days ago.
I'm not sure why I expected this place to be calm. Maybe is the zen-ness that you get from the pictures of expansive and massive mountains and buddhist monks that implies a peaceful tone? Not sure, but Kathmandu? This place is CRAZY. The people I'm traveling with (all expats who now live in Singapore) have bee comparing it to India. So far - they say it's pretty close to the same, but with fewer rogue cows on the streets. Fair enough.
I'm not going to lie - I was a little bit shocked on the drive from the airport to the hotel. There are people and cars and dirt everywhere. Also true - about 24 hours into being here, I remembered what it was I loved about developing countries and crazy, disgusting cities. Oh man... I am BURSTING!
Untrue to form, I actually did a little tour with our group (four of us) yesterday - and loved it. Typically, I loathe tours. But this was different. Just the four of us and Bihm, the sweetest guide you could imagine. We went to the monkey temple (which has a proper Nepali name but I'm too lazy to find it) and Paktapuhr - the old city of cobblestone streets.
Today should be slightly less exciting - we'll be taking care of some practical tasks as a team (Christina, who came to support her husband Vic in the race has given in to peer pressure and will be joining us in the race - so we need to procure here some gear). Chloe and Cissy arrive from Singapore today and we'll meet them at Women LEAD - one of the organizations we're sponsoring on this trip - this afternoon (a post about this org to follow).
Here are some piccies from my travels and my first few days in Kathmandu.
|En route to Shanghai - traditional "shake off the chaos of getting to the airport, getting an actual boarding pass, and getting through security in time" gin and tonic in hand.|
|View from the top of our hotel - yesterday morning's sunrise breakfast. (Awake at 4:30. I'm not complaining and I'm not trying to change this sleep pattern because its actually kind of working for me.)|
|Christina, Jenn, me, and Vic - the four members of our team that have arrived in Kathmandu. We gain two more today.|
|Prayer rolls at monkey temple.|
|Big giant Buddha|
|Timol, the city center.|
|View from monkey temple - overlooking Kathmandu.|
|Some beautiful kids checking out the ancient queen's bath at Pakthapur. - the little ones also happened to be deaf. Their quiet was magnified by this city of noise - little gems of peace in this place.|
|There are some seriously amazing doors in this place.|
|At some temple in Pakthapur.|
|Clay pots. The man in the background made them all.|
|The market in Pakthapur|
|Doors, doors, doors... amazing.|
Wednesday, February 19, 2014
The fact that it’s mid-Feb and I am just now trying to write about events/thoughts of the last 5 months should tell you that 1) I am totally discombobulated, and 2) … I’m super happy.
Chloe hit me up sometime in the fall on a whim, “Do you want to go to Nepal and do an ultra-marathon with me???”
Without a single second of thought, “Yes!!!”
I’m an idiot.
I did a half-marathon (a half marathon – less than ½ of a 50k) in November and suffered in a whole new way. I’m learning a lot about the different ways there are to suffer. This time, it was my hip. Like, serious hip pain. Suddenly it’s as though I’ve aged 50 years in 5 months. I am stiff and heavy and… old.
With a (newly) thick uterus and cysts growing on my ovaries and a (very, very minor) concern that there could be a new cancer growing in my reproductive organs as well as about five seconds of worrying about whether or not the breast cancer had spread to my hip – I decided that training for an ultra-marathon in the Himalayas was not in the cards.
Chloe decided otherwise. “We can walk the whole thing if we need to. Life is too short not to spend it with amazing people.” She was totally right.
It will take me 38 hours to get to Kathmandu. I leave on Saturday.
The same week Chloe convinced me to join her in Annapurna; an MRI confirmed that I’ve got tendonitis in my hip (NOT cancer) and a biopsy showed no cancer in my uterus. While there are still a few tests to be done to make all of this conclusive – I took these results as a sign that I made the right decision.
So I’ve been training like a mad woman, “cramming” for a 50k race at sea level that will actually take place at 10,000 feet. Right, turns out, those mountains in Nepal – they’re pretty high.
“Bursting,” doesn’t describe the way I feel about all of this. Whether I succeed or fail in this little venture, I am so proud of the way my body has responded to training. My legs are thick (carrying water weight, still) and my hip is sore and my shins are tender (stress fractures?) – but weekend after weekend I have been able to go out and RUN for hours and hours and hours.
I remember going through chemo and thinking over and over that all I wanted was to feel my heart beat fast and the blood rush through my legs. Now, occasionally I even have moments where I feel like a runner again; like the old Steph that could bust out 10 miles after work without blinking an eye. It’s so empowering to know that that no matter what I look like – I am capable of running 30 miles. In turn, my attitude about this sweet body of mine has changed. Strong again. Different form, but strong…
I've also been asked to lead a climb up Machu Picchu in may. Seriously??? Whose life is this?!?!?
I've also been asked to lead a climb up Machu Picchu in may. Seriously??? Whose life is this?!?!?
And the journey of acceptance continues. And of course, gratitude, for the ability to run and for the great adventure that lies ahead, abounds. This is LIFE!!!
Love and Loss
A year and a half ago I wrote about traveling to Colorado to cheer on some friends in the Leadville 100 mountain bike race. I really hesitated to take the trip at all because I was in the middle of treatments and was struggling big time. Ultimately I decided to go because I was in the middle of treatments and was struggling big time. I needed mountains and light. Gianna plopped herself into my life there; a breast cancer “thriver” (her words) and a race participant. She turned out to be my light. She was roof that I could recover and eventually race again. She also showed me her mastectomy scars and blew to shreds any concerns I had about surgery. I listened to her intently and did everything she said. I wanted to be her.
Gianna called me two months after I met her in Colorado to tell me that her cancer had returned in her lymph nodes and in her lungs. Stage 4. Stage 4 breast cancer is “treatable but not curable.” Devastating.
I have talked about Gianna in the couple of speaking events I have done – I magnify her “thriving” spirit. The fact that even though she has been diagnosed with a cancer that modern medicine deems incurable, she absolutely believes she will be cured. Even today, as the cancer has spread to 20 different spots on her brain and her spinal chord and it appears she is at the end of this battle, when I ask her what I can do for her – her answer is concise: Pray for the impossible. I am not a big prayer, and I don’t usually believe in the impossible, but I’ve been forced to realize that I don’t get to glean from her thriving spirit and then denounce the beliefs that make her who she is.
And so, I support her indefinitely, Gianna – my light. There is no doubt that as I’m running in Annapurna I will carry her with me.
And the lessons continue.
It’s funny to me how normal I’ve become when it comes to practical concerns. I’m just now realizing how fearless I was when I traveled Africa. But now I find myself worrying about flying now (um, in Nepal – which is scary!) and wondering what it will feel like to wander Kathmandu alone. Two years ago I would not have thought twice about it. In some ways I think this is exactly what I need – the reminder that Nepalese are just people too, and that death is always a possibility. But I do snicker at the thought of beating the big C and all of the concern and talk that goes into keeping it from coming back and all of that hoopla could be a non-issue. I could die crossing the street tomorrow or trying to fly from Kathmandu to Pokhara. I go through these circles in my head and then I remember what I’ve said since my first round of chemo – and it rings even more true today…
I do not want to die of cancer. It’s not that I don’t want cancer to be my cause of death, it’s that I do not want to actually go through the process of dying of cancer. I have seen it. It’s horrific. I am terrified of it. So if I die on an airplane trying to run an ultramarathon in Nepal, awesome. (I’m going to keep telling myself until I return to US soil in March.)
I have moved at least six times in the last 3 years – and that doesn’t include the time I spent in Africa where I was always moving. So when Ashley and I moved into this place in June, I was super stoked to know that I would have a home for a whole entire year. But wouldn’t you know it that a whopping 4 months into our tenure here, Ashley’s boss asked her to move to Austin, Texas. So… Ashley and her dog and two cats left me and Tate two weeks ago. I was afraid that I would have to move, or worse – be forced to get a roommate (Ashley wasn’t a roommate – she was an eternal advocate, and probably the best friend I could have asked for at the time), but the stars have aligned and I am able to stay in this two bedroom for the duration of my lease. Gratitude abounds for the stability and the ability to stay.
It’s been a while since I’ve been healthy and working and lived alone… and it feels weird. Not actually that comfortable for the first few days. But Tate and I are getting used to the solitude and learning to enjoy it.
And of course – the same week that Ashley moved out, I received a job offer for a full time, permanent role (WITH BENEFITS) with the company I’d been contracting with since June. This also happened to coincide with week the fact that my oncologists office called to tell me that my (beloved) oncologist wouldn’t be able to treat me anymore – unless my benefits changed.
Serendipity? I’ve never felt so lucky.
Stars aligning, once again for me - I don't understand it but I'm trying so hard to focus and give thanks and be true to the light inside me.
I plan on writing about Nepal while I’m in Nepal. The intention is to actually keep note of the experiences that I’m having while I’m having them. But of course – the writing won’t come at the expense of actually having the experiences (so I may not actually write in Nepal – and I’m good with that).
Wish me luck as I head out on this one… I am confident that this race will be the most challenging yet. Piccies to come, of course.
Sunday, November 10, 2013
It’s amazing to me how my brain is able compartmentalize the events of the last few years. As the “cancer” phase seems to be getting more distant and my body heals, I find myself going through major swings of emotion. It’s almost as though it all happened so quickly that I didn’t get a chance to really process it… so as life settles down, I take turns diving into the different “pools” of events… cancer, New Zealand, Dan, Africa, Thailand and the many moves, road trips, and relationships built in the time and space between. I’m not exceptional… but it’s a lot for this little brain of mine to process. Every once in a while I’ll be sitting in my cushy chair at my cushy desk in this ivory tower and a memory will flood my mind and stops me cold.
When I was in New Zealand we were lucky enough to visit Stewart Island – a little speck of land just below the South Island. It’s a gorgeous place magnified by the fact that 400 of the best people on the planet have gravitated to Half-Moon Bay and have made it graciously, instantly comfortable.
Many of the people in Stewart Island knew who we were before we arrived because we’d been on TV a few days before. So when we walked down the street people would say, “Oh, you’re the Great Walkers!” I’m not gonna lie, it was fun… So one night when the team was getting ready for dinner, catastrophe struck when we realized we were out of wine. It was 4:50 pm and I had ten minutes to get to the only market in town – 1 km away - before it closed. So I ran, in flip flops to the store to find the doors already locked. Bummed, and out of breath, I rested my forehead to the glass door. I looked up to find the woman inside watching my moment of defeat. She opened the door… “You are a great walker!” Yep! I explained that the team was in need of wine… she let me in. I bought two bottles of wine and some ice cream. As I was checking out, the woman said, “You’re a survivor.” Yes… I am. “My niece had breast cancer as well.” I’m always afraid when people say this… Obviously the next question is, “How is she now?” But before I got a chance to ask the question the woman explained that her niece was young when she was diagnosed, like me… 34 years old. She had chemo and mastectomies and radiation… like me. And was declared “cancer free” - like me. And then (which is where it gets scary) her cancer came back. And then it killed her.
I was the only person in the store with this woman who had lost her niece to the disease that tried to kill me. I started crying. I don’t even know why I started crying, but I had tears and snot and all the bumbling works. The woman apologized for making me cry and gave me a hug. I felt worse for crying, I’m sure. What an idiot.
So I meandered back to the house– stopping at the community center where Karl (our videographer/photographer) had been working on the only wifi on the Island (trying to get Air New Zealand the video they needed for publicity). Somewhere between the store and the community center the bag carrying all my groceries split and my wine fell onto the sidewalk and broke. I had a total meltdown. Sobbing on the street about my wine. And cancer. And death. And life. And loss. And happiness. All of it hitting me there, on the sidewalk in Stewart Island. I found Karl outside the community center and cried on his shoulder for an hour or so before he walked me back to the house.
And there you have the memory that came flooding back to me today…
A couple of days ago I was tooling around on facebook and saw Angelo Merendino’s stunning photo-documentary of his wife’s battle with cancer. I cried when I saw the pictures, but I cried more when I read her story. She, vibrant and beautiful and healthy – diagnosed originally in 2008, had chemo, mastectomies, and radiation and was given the “all clear” by doctors only to be diagnosed with metastasized, terminal cancer a year and a half later. I have spent the last couple days combing through her blog, crying.
It’s one of the pools I find myself diving into more often recently… the breast cancer pool. A deeper, darker pool than the version I swam in. When you get diagnosed with cancer you are forced to deal with the day to day activities of fighting the disease. You don’t (or at least, I didn’t) get a chance to really think about the big fat picture of how it affects the rest of life… you’re so concerned with having a rest of your life. And maybe it’s obvious to most that this experience would alter everything going forward… But to me, it was always about returning to normalcy. I’m finding as I jump from one pool of memories to the next that “normalcy” is a stupid idea… Also, being a quality I never really acquired, probably not something I’m capable of returning to.
So Angelo Merendino’s work is breaking my heart. And his wife’s blog breaks my heart because I read it and re-read it and I know the big words and the medicines and I can relate to the feelings that she and her husband describe. I have a hard time with the fact that what grew inside her breast also grew inside of mine. I have a harder time understanding why I get to sit in this ivory tower and her doting husband has to navigate this life without her. I am shattered when I get to the part in her blog when she is told that she has cancer in her bones and her liver. I break because I think back to the day that I got my good news – the day I was told I was pathologically clean – and I imagine what it would have felt like and meant for me if I had gotten different news. I feel a little schizophrenic when I think about it because I feel so lucky to be alive, and so confused about why I’m alive at the same time. And then, before I even realize I’m confused, I feel like I’m not doing enough with this life.
More, more, more… I need to be more. And I want to do more and I want to feel more. But then I’m tired and I remember what my friend Gianna (who also was diagnosed, treated, cleared, and is now battling her second round - this time the metastasized version of the beast) told me: Don’t over-train. Don’t drink too much wine. Don’t eat crap. She is genuinely trying to tell me how to prevent recurrence. She wants to save my life.
I want to make sure I’m living enough, but I don’t want to live too much.
All of this happens in my head in a split second and then I want to cry. But I’m not capable of crying much these days, unless I’m reading Angelo or Jennifer Merendino’s blogs. Which I guess might be why I keep reading them even though everyone keeps telling me to knock it off. Maybe I need to cry and process the idea of a new, metastasized, deadly cancer to be able to move forward with a healthy body? I get the impression that people want me to get over it. The cancer’s gone, right? And I have hair now and I can run and I ride my bike everywhere I go… so I should feel good! Right!?!? Easier said than done, peeps. There is nothing, no matter what, that will ever give me the sense of invincibility I once had (or nipples, for that matter).
The fact is, there is no bouncing back. I hate that stupid term. There was no bouncing in the first place… all good, difficult things (like completing an Ironman, or traveling Africa - solo) come from hard work. Recovery is hard work. The swirling emotions that surround being poisoned, facing death, and the reclamation of a body that has been through war are exhausting and confusing and really, really shouldn’t be tossed aside as something I (or anyone else) should be able to bounce back from, or “get over.”
Do I sound bitter? Maybe. But trust me when I say that the gratitude that comes with having life doesn’t come with some moments of confusion. I keep hearing the term “survivor’s guilt,” but I think it’s more a combination of “survivor’s fear” and “survivor’s guilt” for me. Friends and family get upset when I talk about the reality of recurrence, so I’m not supposed to talk about it. They say “stay positive” – but that’s crap. I’m pretty sure Jennifer Merendio didn’t bring her cancer back by thinking it was going to come back. Same is true for my dear friend Gianna. Reality is, my friends and family are probably as scared of coming back as I am – they’d rather not hear about my concerns of swimming in that dark pool. It doesn’t exist if we don’t talk about it… right?
Wait… did I have a point?
I read through Jennifer’s blog and I’m so disappointed that I didn’t keep a better record of my time going through treatment. I tried, but was everything was so hazy and I was so frustrated with the fact that my brain wouldn’t work that I usually gave up. I’m realizing now that maybe it’s not important to have a point. I just need to get stuff out.
That being said, cancer, survival, and the ideas of “bouncing back” or normalcy have forced me contemplate a couple of really important things. 1) Why do I feel like my value is directly related to how fit I appear? I am strong, but my appearance doesn’t say so and for some reason I feel like this says something about who I am. 2) Does the fact that I survived cancer mean that I should be happy with a body that doesn’t function/perform like it once did? Did I unknowingly trade my fit, muscular body for life? Knowing that there are people like Angelo out there who will mourn the loss of their partners, mothers, daughters, sons and fathers to this awful disease makes me feel like a jerk for even asking the question. And while the alternative to survival doesn’t make survival an easy task, I know that the answer could very well be, “yes” – and then I feel thankful again. (Hello again, schizo… )
Once again, the aftermath of the past year has me struggling to find a balance of gratitude for life and the ability to do what I can do and the drive for more fitness, more knowledge, deeper relationships, and more life in general. Grateful for the struggle and for life – onward, I go.