Friday, March 20, 2015

Connecting (more) Dots

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Leadville

dot dot dot

Gianna

dot dot dot

Leadville.

(I hope.)

I wrote about Gianna in a post about two and a half years ago when I went to Leadville between my fifth and sixth chemo treatments, then again last year when I went to Annapurna - inspired by my dear friend who had become my light in survivorship. Proof that there was indeed life after the big C.

Not coincidentally (cause there's no such thing), Gianna died of  (recurrent) metastatic breast cancer while I was running the Annapurna Ultramarathon on March 1st of last year. Somewhere around mile 28 I sped off from the group I had been running with for at least the last 7 hours. I needed to feel the wind on my face and the pavement under my feet. My friends were upset that I would take off so hastily without an explanation. But I didn't really have an explanation until I got back to the hotel and realized that Gianna had died. We all agreed that she had come to visit me that afternoon, bringing me briskly to the finish line - as she would have done herself.

Leadville represents so many things for me. I was so, so sick when I was there. Unable to hike (what would normally be a no-brainer for me) halfway up powerline. It was so difficult to get me there that we decided it would be best to leave me there all day rather than bring me down for lunch and back up again for when the riders returned. So Virgie went to get us both lunch, leaving me and Tate on the mountain for almost 11 hours. When the riders did return to powerline, 80 miles into their 104 mile ride, they somehow breathed life into me with their encouragement for my pathetic, bald self even though clearly it should have been the other way around. It was one of the best days of my life. And so, before she found out her cancer had returned and before it got really bad, Gianna and I talked about doing it together one day.

To be healthy enough to actually consider participating in this race, to imagine actually riding down powerline (and then pushing my bike back up it 60 miles later) with all of those beautiful athletes, to bringing Gianna's spirit back to the race I'd met her at, to being able to give whatever light I have in me to a race and place that gave so much to me when I needed it most ... my heart is completely full.

I found out on January 15th that I was selected into the Leadville 100 MTB lottery. Training is in full force (except for this week as I'm galavanting around Costa Rica spending way too much time in the sun and drinking way too many gin and tonics). Post hysterectomy (and on new meds) I feel strong and healthy and ready to tackle this beast.

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