Wednesday, January 28, 2015

New Construction

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I started this post two months ago. I couldn't get it all out at one time. Here is what I ended up with. I'm still not happy with it, but I need the finality of posting it so that I can move on. Also - it's long and I don't care. 


I feel like a broken record. I start and stop journal entries and blogs and updates and posts over and over again because I can’t figure out exactly what it is I need to say. I can’t convince my brain to concentrate for more than five minutes at a time and then when I start a blog/update/post with those same words, “I can’t figure out what I want to say or how I want to say it.” I get frustrated with myself and delete them. Nothing is original anymore and it all just feels like more blaaaah…. Life isn’t blaaaah but my writing sure is. It’s pissing me off. I’ve lost my muse and find it impossible to be smart with my writing anymore.

Sometimes (rarely), I find myself having really brilliant thoughts – but dangit, they’re gone before I even get a chance to realize they’re brilliant. So frustrating. I’m not sure what’s going on with my head or why I seem to be incapable of maintaining any focus. But beyond the inability to focus, the thing that really bothers me is that I feel like I don’t feel as much. I’m not sure if I’m depressed or if I’ve spent so much time trying not to feel out of self-preservation that I’ve become too good at it. Or maybe it’s the meds? What I do know is that I’ve got to get tapped back into that core of myself that used to be capable of expressing raw feelings… It’s part of the essential human experience for me. Life.

Life, right – it’s been interesting the last several months. I guess the reality is that it’s been going on for about 18 months, but I didn’t recognize it that way until I was catapulted out of the forest and had a pretty clear view of it from above without any trees blocking reality.

I wrote and posted about it before, but upon re-reading my post I decided I’d hate myself based on what I wrote there if I didn’t know myself. My goal is to be authentic and truthful without feeling sorry for myself. The reality that I’m learning as I read other blogs is that because we as humans don’t get to walk in each other’s shoes means that sometimes we are going to incorrectly perceive a bit of self-sorrow now and then.  Still, on reflection I found that the post didn’t reflect what I was feeling – so it’s gone-zo.

It’s really hard for me to be this honest and vulnerable because I’ve built my recovery on being positive and generating good energy. I’d prefer to pretend it isn’t happening, that I don’t feel sad or angry or confused, and that I am absolutely finding the “everything happens for a reason-ness” in this. But I’m not a very good faker.  Similar to the day I was diagnosed, I struggle. I don’t want to talk about it. I can barely write about it… I hardly want to admit it to myself, even in the darkest corners of my heart in the darkest nights when nobody is around. And so, I run from things or I chase things or do anything that will prevent me from feeling the feelings that lurk in the darkest corners of my heart in the darkest nights when nobody is around. I guess the upside is that I will be very fit (it is a pretty sweet upside!).

(Also, I've learned that sometimes a bit of self-sorrow is ok… maybe even appropriate.)

The Facts Without {much} Emotion:

I had triple positive breast cancer which, among other things means that my cancer that was fueled by both estrogen and progesterone. Because of that, I have been on a pill (Tamoxifen) that blocks the estrogen from my body. I've been on this pill for 2 years and am supposed to be on it for 10 (or maybe, forever?). Tamoxifen is very effective (imperative, for me) in preventing a recurrence of breast cancer which, because of my age and the stage of my cancer, is high(ish). Tamoxifen also has the propensity to increase my chances of developing uterine cancer (I think I’ve read it doubles or triples the chances, but that might be less because of my age, I’m not sure). Even still, the benefits of taking Tamoxifen far outweigh any risk of uterine cancer.

That being said, my doctors have been monitoring abnormal thickening of my endometrial lining for over a year now. Endometrial hyperplasia (which is what I had) can be a precursor to uterine cancer. In the past year I have had four pelvic ultrasounds, two uterine biopsies, a D&C and an abdominal ultrasound (just to monitor my uterus… this doesn't include other scans to rule out cancer in other places).

When my last ultrasound indicated that my uterine lining had again doubled after the D&C I had last March, my regular Gyn sent me to a Gynecologic Oncologist. After some discussion between her and I, and her and my regular oncologist, and me and my regular oncologist (to be covered in the “Emotion without {many} Facts” section of this update), we all decided it would be best for me to undergo a hysterectomy. I also requested my ovaries be taken since they (theoretically) produce estrogen (cancer fuel) and since I hadn’t had a period in 2.5 years (not functioning anymore, thank you - chemo) and since ovaries too can grow cancer (especially if you’re diagnosed young and have a genetic predisposition to breast cancer).

And so it was, the surgery took place on November 12. It was outpatient (which is as crazy as it sounds) – I came home that evening. As most people who have laparoscopic surgery will tell you, vast majority of the pain comes from the gas they use to pump you up to move around in there. Outside of that, my pain was in the first 8 hours after surgery, in recovery. Once we got the pain under control in the hospital, I hit the ground running.

Literally- 8 days after surgery I was running.

Here I am, almost two weeks out of surgery and I am almost 100%. Running almost full speed and at full distance. I haven’t been on the bike yet, but I am sure with far less impact in cycling, I will be just fine on the bike. All of this is great news seeing as I have some pretty lofty goals for 2015.

The Emotions Without {many} Facts:

Alright, so this was a massive blow to me. I haven’t been able to pull my emotions together enough to figure out exactly why – but of all the treatments and losses I’ve experienced in the cancer journey – this one hurt the most. Maybe it’s because my expectation was that I’d lost what there was to lose (short of life)? Or maybe it’s because I always thought in the waaaay back of my head that I’d be able to have some miracle baby. It’s definitely at least partly because I have always, always known that I would bear children. I (like every other girl growing up) had named them and figured out exactly how I would deliver and nurse and raise them to be strong and independent and vulnerable – of course, realizing that all of it would change when another party (baby-daddy) was added to the mix.
It feels so sudden, processing the fact that I will, for absolute certainty, not be having children – not my own, anyway.

But it’s not sudden. I have wondered for years whether or not I would actually get the privilege of growing a baby inside me. And over the past two and a half years (since I started treatment) my fertility has been a major question mark. I haven’t had a period since my first chemo treatment and definitely went through the gamut of menopausal symptoms in the year following treatment.  But even then, I didn’t allow myself to process the idea that I would not be able to have babies. And, to be fair – my doctors also held out hope that my reproductive system would recover.

As I contemplate it now, I probably didn’t allow myself to think about it then because I was probably unable to even begin to consider the finality of what was happening at the time. It was all too much and I think my subconscious way of dealing with it was to not deal with it. Or, more accurately, to deal with one loss at a time. So I did. First the hair, then the fitness, then the boyfriend, then the health, then the breasts, then the nipples, then the body as I used to know it… I processed my inability to recover like I once had and found a way to accept the edema in my legs and the fact that my hair, no matter what I tried, would not grow in thick enough to cover my head…  Ultimately, all of those things led up to me feeling like I’d lost the things that made me feel feminine.

Comments I've received from people in delivering this news indicate that they struggle seeing me struggle. “There’s always adoption, Stephanie! You can still be a mom.” Yes, it’s true. It’s just that easy… And their comments have forced me to reconcile what it is I’m really mourning. While I do find remarks a little bit (rash and insensitive?) difficult to swallow, they have a place in my emotional recovery. They've helped me to recognize that I am not mourning the loss of my ability to be a mother. Short of dying, my ability to mother was never on the table. There is something very special, intrinsically feminine about being able to grow a baby inside you. For me, it was never about raising my own children – since anyone who knows me is aware that I can love any child. It was about growing a life inside of me… It really pisses me off when people try to minimize that loss.

So it’s crushed me. I don’t feel it all the time. The waves of emotion come over me when I least expect them and I’m trying to find the best ways to deal with them. It’s like intermittent depression (which could be in part, due to the surgical onset of menopause at the age of 36 – which, by the way sucks bad). Just as the waves of brilliant thoughts and emotion roll over me, so do moments of clarity, of understanding why this hurts so much…

Treatment had an end. As far as I knew, I understood where the end of the race was and I understood the outcome: LIFE. Even though I really was very sick during treatment, I had hope for a future, health, life, etc… The outcome of this surgery is so definitive. Permanent. Painful . As much as I persevere and as much as I process any anger or sadness – I will never have the ability to bear children. I was born with the body parts and the potential to grow babies and now the body parts and the potential are gone. Forever.  Reconciling my love of children with the events of 2014 is a tough nugget for me. I’m working my way through it all, finding the good and giving the tough stuff the attention it deserves.

This whole process of surviving (breast) cancer is pretty wild. Poison, then reconstruction. Surgery, then reconstruction. Radiation, then reconstruction... all of it to get back to what I was before. But this feels different. We are reconstructing anything; there's no reconstruction of a fully operational reproductive system (and the life events that come with it). Since the goal is not to go back to where I was before, I've decided I'm calling it "new construction," and it's working for me. 

Here’s to hoping for a 2015 full of racing, health, laughter, friendships, and construction of the new normal. 

Tuesday, September 30, 2014

Legacy

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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 stupid.

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, August 13, 2014

Wednesday, February 26, 2014

Kathmandu

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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. 

Monkey Temple

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. 

A random old man. I didn't take this picture, Vic took it with my phone as he was taking a picture of me. After Vic handed the phone back to me the man insisted I pay him for taking the photo. So, so common. And annoying - although maybe we shouldn't have taken the picture? I'm always trying to figure what is right in these situations. Do I give the man money for taking the picture and perpetuate the dependency? (He walked up to Vic expecting to have his photo taken.) Or do I walk away and not pay him for his "service?" I did get a pretty amazing photo out of it. 

Clay pots. The man in the background made them all. 

The market in Pakthapur

Doors, doors, doors... amazing. 

Wednesday, February 19, 2014

Annapurna (and a bit of an update...)

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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.

Life

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?!?!?

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.

Fear

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.)

Comforts

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.

But…

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.