Hey, I'm Proud of Myself!

It’s been 474 days since my world went haywire. 11,376 hours of this. How can that number be so small? But then, how can it have been so long? I ponder this endlessly. It’s just one item on a list of questions I’ll never be able to answer. 

It’s hard to think about, but also kind of curiously freeing to have surpassed what will hopefully be one of the biggest obstacles of my life.

Wait yeah, why me again?

I’ll never know why I got cancer. I have no relevant family history. No risk factors. No genetic mutations that would make it likely. Just dumb luck. Dumb in this sense being just that – dumb. Bad. Annoying. Blind and cruel. I spent plenty of time in anguish about this. 

You read stories of people going through hardships like this, people who are praised for never asking “why me?” Well. I am not that person. I have questioned this since the moment I found out. Sometimes, angrily. Sometimes just inquisitively. 

At the beginning of this story, one doctor told me I was “very special.” It sounded so odd. I knew he was right, but I hated it. You want to be special for something positive, not...this. But after sitting with this idea for a very long time, I’ve found it to be true and even encouraging. 

It’s taken 474 days, but I finally realized that this feeling edging into my mind has been there all along: pride. I didn’t ask for this fate, but I did make it through this chapter. And I’m proud. I written about this conundrum here before, but I think I’m just now really coming to accept what this means. Hearing things like that has been hard for me, but I’m starting to get it.

I struggle with being called brave or strong or a fighter – in large part because of how intimately I’ve come to understand the heartbreaking reality that is metastatic cancer, which at this time, I’m lucky not to have. Stage IV (metastatic) cancer means that cancer has spread, and for many, that treatment will last the remainder of their lives. Having an end in sight was imperative to my healing. I had a finish line, a big, important goal, but not everyone does. 

The people who face stage IV cancer and continue to go through treatment and life are the ones who are truly brave. If you meet a person like this, please recognize that they are probably exactly as terrified as you imagine you’d be yourself in that situation, but here they are! Out in the world, living. (This applies to so many challenges outside of cancer too, of course.) Those guys are my heroes. It brings me to tears to imagine being in their shoes and I hope with everything I am that I never have to walk in them.

With that said, I won’t downplay my experience. It was hell. So much more hell than I thought I’d EVER be able to endure. I’ve been a wittle baby my entire life – my family and boyfriend will be happy to attest to this (those jerks). So cancer just seemed like an insurmountable joke of a diagnosis. I wanted so badly to just go to sleep and wake up in a year. 

That didn’t happen, but somehow, a year did pass. (Or maybe it DID happen and we’re all just incepting ourselves with fake memories of the past year?! 🧐)

I did it. I did it because I had to, but I’m still proud of it. I’m proud of my body for getting me through. This little shell I’d considered weak and generally below par for all my life looks totally different in my eyes now. My body, (the one that houses ME!), was able to work hard enough to stop my cancer from spreading before we found it, which is kinda a miracle in itself. My body pulled me through all those impossible scenarios and came out on top. I truly thought I’d be forever a shell of my former self, feeling horrible about myself and unable to walk small distances, let alone live normally. I thought my hands and feet would always be numb and useless. I’m happy to report, I was wrong!

It’s hard to look back on those times, but the more I do, the more grateful I am to be on this side of it. It’s odd but so cathartic to imagine going back and talking to that scared girl I was at the start of it. I want to throw my arms around her and tell her how capable and strong she is. I want to tell her that she can and WILL do it, and that “now me” is proof. (Since frankly, I know that I’m the only person I’d actually believe.)

The endless days of chemo infusion where I felt like I was being beaten up over and over again. When I had to get oxygen because my heart could not keep up to save its life (literally, ha). The excruciating calf cramps the next day. The hellacious side effects from my Neulasta shot. Pulling out handfuls of hair as I washed it (I got to keep my hair for the most part and I’m incredibly grateful for that). The days my hands and feet were so cold and neuropathy-ridden that I really thought they might crack off. The many days spent sitting miserably in a hospital bed in intense pain with no explanation. 

The sickening feeling of knowing that the radiation I was receiving, which felt like nothing at all during the ~3 minutes total it actually lasted, was actively destroying my reproductive organs. The 9 days in a row I received no nutrition whatsoever. The shockingly distinct pain of multiple intestinal blockages. The anticipation that came with throwing up everything I ate for days on end. The phase after surgery when I could literally only eat limes and candy. The days when I thought my lower back was collapsing in on itself because it hurt so badly. The sadness and anxiety that came with every visit and scan. The unending psychological trip of it all. The fear that came when I accidentally ripped out the chemo needle from my port because I was throwing up too hard. When walking across the room was something I had to mentally and physically prepare for, since I knew it would take all the energy I had. The more I add here, the most I realize I could never capture the hardships of my past year completely. 

The point is: if you’d asked me 474 days ago whether there was a chance in hell that I could not only live through all that, but get rid of cancer in the meantime, I’d have laughed. And cried in a panic. But I didn’t choose my fate, and no one else does either.

It me

Everyone thinks they wouldn’t be able to, but the reality is: when you’re forced to choose to “do it” or just die, it’s no longer an issue of strength or mentality. I had such an issue with feeling brave or valiant because it wasn’t something I was choosing to take part in, it was simply my only choice. 

With all that said, I’m doing good. Really good! 

The New Normal
This is a phrase people in the cancer community use constantly, but it’s kind of just a running  joke. There is no “new normal,” because everything is different. Normal is now abnormal, up is now down. 

The good days, however, do probably look pretty normal. I’m back to working full time, I’ve gained back pretty much all the weight that fell off (and then some), and I can walk normal distances, and even work out a bit. I appreciate a lot things I wouldn’t have before – when I was traveling recently, I was standing in the TSA line and remembered that the last time I got on a plane, I was wearing a sterile mask and had to have everything heavier than my purse carried for me. Being able to pack up and rush halfway across the country to see my sister alone and at a day’s notice was so. freaking. empowering.

Nowadays, it seems like it’s so much easier to focus on what matters. Of course, that’s not to say I have some rosy outlook and never get annoyed at things that “don't really matter,” but that I can see the depth of those things. It’s second nature now to be able to categorize things, and I find myself asking “is this a real problem” often. Usually, it’s not. :) 

In the name of keeping it real, however, I can’t pretend it’s all sunshine and roses in my corner of the world. Bad days are still common and I’m still plagued with LARS here and there. My feet are still pretty numb, and I’m still not confident it’ll ever go away, but they feel significantly better than they did six months ago. 

More than anything though, the fatigue still gets me. That seems confusing, even to me, since I just mentioned how I feel strong and empowered for the most part, but eh – that’s the total lack of sensibility of cancer. Nowadays, fatigue looks more like struggling to maintain the energy for a full day’s work, needing a whole day to recover from even a mild night out past 10, and well, really enjoying sleep more than ever in my life.

Good days are really good and bad days can be really bad. I’m immensely grateful for the continued support of my wonderful team at work and my employer for allowing me all the time I need to heal. Also, shoutout to Rowan’s wonderful work for allowing him the flexibility to be with me for every moment. I can’t imagine going this alone. I really can’t. I keep hearing stories of people who have lost their jobs after a cancer diagnosis, and the cruelty of it all is staggering. Thank god for tech companies and their progressive policies! (And the dogs they let us bring to work.)

Hindsight
Speaking of that fatigue, I only now realize how much it shaped my experience with cancer. I didn’t realize when I was in the midst of it how truly exhausted I was every moment of every day. It made me unpleasant and grouchy and angry at things and people I shouldn’t have been. I apologize to anyone who may have been on the receiving end of this, but I know it was the people closest to me that had to put up with the most. I appreciate those people more and more with every passing day.

When you’re passing through the darkest days of your life, it can be impossible to see the light in your world, even if it’s walking right there next to you. So thank you for being my light, my dear friends and family. And to my mother and Rowan, more than anyone. My saviors. <3 I also can’t help but mention my roommates...not enough praise to my friends Corinne and Marissa, who were as deeply involved as I was during much of this. Love them 5ever. 

This mess has also taught me how to better see the world past my own lens. When I first got cancer, it felt immensely personal – cruel and unusual and like I was being individually targeted. I’m far beyond that now, and it was so eye-opening to become part of a community that’s home to SO MANY MORE PEOPLE than you’d imagine. There are so many who were in shoes similar to – or quite often far worse – than mine. I was never for a second alone in this, and I’m so so grateful for the friends I’ve found in this unfortunate club. 

You never know. You can’t know.
Through a year of cancer treatment, I learned so many lessons I never wanted to, but there’s no doubt I’m better for it. One of the most valuable to me, which I’ve certainly written about here before, is withholding judgement of others. The deeper I’ve gotten into this world, the more familiar I’ve become with the reality that you cannot know anything just by looking at a person. It’s something I’ve always known, always been taught, but a concept I didn’t REALLY get until I was on the other end of it. Admittedly, my experiences with feeling judged by clueless people can’t hold a candle to the real prejudices that probably billions of people face on a daily basis, but it was an informative little hint.

On the outside, pretty much no one could tell there was anything wrong with me. I distinctly remember a phase during the worst of times when the cold sensitivity I had from oxaliplatin (one of my chemo drugs) was so severe that washing my hands wasn’t even an option. I had to walk out of so many bathrooms while people stared at with a mix of confusion and disgust for not doing it. Of course I used hand sanitizer (one thing the sickies are uncompromising on is germs), but how could anyone know? I would never in a million years have guessed that not washing your hands in a public bathroom was anything but plain old gross – let alone a side effect of chemo. 

I try to keep in mind the randomness of all of this. There are so many factors at play in all our lives that no one could ever see or guess. With this in mind, I try harder than ever to apply the thinking that you truly never know what’s going on in someone’s life, so jumping to a judgement about anything is often unfair and unfounded. I continue to fail at this all the time, but I will never forget the lesson.

What Got Me Through 

Now that I’ve escaped the fog of this horrible year, I can reflect on what mattered most. And I bet you know what I’m gonna say. 

My people! I will never stop shouting from the rooftops about my gratitude for the people I love so dearly. Nothing has ever come close to making me feel as loved and worthwhile as did the love I received through this process. For every single complaint I may have made about someone saying “the wrong thing” that ended up being hurtful, there is no comparison between the hurt of hearing something well-intentioned but uninformed, and the feeling of never hearing a word from someone you thought would care to reach out. Luckily for me, those situations were extremely few and far between, but it didn’t go unnoticed. I don’t say this to complain at all – as far as support, I have NOTHING to complain about – but to point out that if you matter to someone, they want to hear from you. If you’re in a position to offer someone a kind word, please do it. Don’t feel weird, or like an intruder, or like you have nothing to add. 

My advice is: don’t worry about saying the wrong thing. Tell them. Yes, I’ve lamented the groan-inducing cliches of empty positivity and blanket “it’ll be ok”-type statements, but these are minutiae in the grand scheme of making sure your people feel loved. 

The feeling of hearing from people I hadn’t been close with in a while was seriously encouraging for me, and never ever felt weird or out of place. I’m sure this depends on the person, but for me, it was really heartening. 

A friend I knew from when i lived in Australia took the time to crochet me two super soft headbands and sent along a full care package and handwritten letter. I hadn’t spoken to her in years, and this touched me more than I could ever say. (Sara, you are a treasure.) Rowan’s parents were tireless supporters during every step of the way. His angel of a mom, Sue, made me the most beautiful quilt. Curiously, this magical quilt was the one thing that let me sleep through the night. During those days, I could never sleep well because I’d wake up absolutely drenched in sweat, no matter the blanket, duvet or sheet. This creation was the one and only solution and it still makes me smile to think about. My Austin friends did so much to make me feel supported and loved when I was in the hospital (and out), and I will be hanging on to a certain group project poster for the rest of my existence. I feel like I could never list all the kindnesses I was granted – in part because there were so many, and in part because my brain forgot about 60% of everything thanks to chemo brain – but every single gesture and word was appreciated.

16 of my dearest most amazing friends came to New Orleans to celebrate no-more-cancer with me! I’m the luckiest.

So many of my friends traveled across the country to see me. My sisters made me laugh (and cry during “the poking incident, HANNAH 😂) when I would rant-text them all my complaints for the day. Several of my mom’s friends and my family members continuously sent me cards and letters for no purpose other than to say they were thinking of and praying for me. Getting a surprise like this in my mailbox so often was so sweet. Other friends sent me coloring books, bubble bath, words of encouragement, socks (my weakness), snacks and funny mugs. Another friend crocheted me a beautiful maroon scarf. Plenty of people brought me back Californian contraband and, well, that was appreciated to say the least. Haaa.

A sister reunion on a gator-watchin’ boat in the bayou.

Then there’s the little things. Things like…little dogs. My weenie Leni was my most therapeutic resource. Her demeanor changed on a dime when she sensed something was wrong with me, and the quiet comfort of having this warm little pup crawl onto my lap in a moment of misery was lifesaving. She is the best girl in the history of the world. Of course, pups like my sweet nephew dog Beaver and all the dogs at work, helped a lot too.

Humor helped a lot too. If you’ve got cancer and no sense of humor, I’m sad for you, friend. It’s absolutely necessary to keep your head on even kind of straight. One of the most helpful sources of comedy I found through cancer was @TheCancerPatient, an Instagram account run by a former cancer patient and current oncology nurse. Thousands of people from around the world contribute tales of their experiences and challenges. There’s even a shirt that pays homage to the adorable face/dude who gives you instructions in the CT machine! I seriously shrieked when I found it, it was the ultimate validation that other people appreciated this tiny little bright spot in the scariness of scan days.

I kept trying to tell my friends about the cute little guy on this machine, but no one understood. Imagine my DELIGHT when I saw these were a thing.

It’s SO ridiculously wonderful to be able to laugh about these absurd shared circumstances that only we could understand. This account made me realize that so many of the confusing emotions I was experiencing were perfectly normal for someone in my shoes. It gave words to things I couldn’t, like “toxic positivity,” the frustration of people glossing over the hard stuff and telling you to just “be positive.” I spent many many hours scrolling through this account in hospital, and I think it’s a great follow for even people without cancer. All your favorite memes, just with a cancer twist! (Look up what the PCHP is for me. 😝)

Little things I did just for me were helpful too. I guess nowadays, it’s fashionable to call it “self care.” Whether it was yet another bubble bath, a little good old-fashioned water color therapy, listening to my cancer jams on repeat (mainly I’m Still Standing, and Rainbow if we’re being honest), or just letting myself lean into indulgences like massages or brain-melting reality TV (Rowan will tell you all about My 600-lb Life, he’s a big fan), these little things made life a little better. I feel so immensely lucky to have had the luxury of these things during such a rough time. Not everyone is so fortunate. 

Finally, taking serious care of my mental health has been the single most valuable step I’ve taken beyond treatment for the actual cancer. Many people enduring a long traumatic event like cancer think of mental healthcare as their very last priority. I felt the opposite the entire time, and was careful to keep up with my therapy appointments and anxiety medication. It should not be taboo that this corner of the oncology world exists, but it still feels like it is at times. 

The chaos in your brain that ensues once you’re diagnosed with cancer is difficult to describe in any way other than to call it a parasite. It leaks into every thought, every idea, every memory, every interpretation of every little thing, every decision, every emotion. It’s a huge part of what makes the post-treatment phase of cancer sometimes even harder than being in the thick of things. When the one thing occupying your entire brain is suddenly “fixed” and gone, it can feel a little like whiplash. 

I was incredibly lucky to have been treated by the brilliant social work teams both at MD Anderson and St. David’s in Austin. Additionally, I was referred to an oncological psychiatrist who is young, understanding and just gets it. He has helped me more than I can put into words as I navigated my way through chemo brain and serious anxiety. And of course, regular old therapy! I’m seeing a provider who would otherwise not be covered by my insurance through an amazing nonprofit called Flatwater Foundation. My therapist is wonderful and relatable; I look forward to seeing her because she feels like a friend. But a super capable friend who works through the magic of EMDR therapy. 

Next Steps

In September, I had my 3-month scan which confirmed I’m still good and clear. I’ll have another scan in December, then a colonoscopy in January. I’ll continue getting scans every 3 months for a year, then switch to 6 months, given that all remains well.

Well, that’s all I’ve got for now. Thanks as always for taking the time to read through my ramblings and make this blog worth writing. I don’t really know why I still feel compelled to record all my cancery reflections here, but my hope is that maybe I’ll look back on this in the future and learn a thing or two. Who knows. The real lesson I learn as I write these blogs is that I don’t know a damn thing. Every time I feel like I’ve had an aha! moment, or reached some sort of epiphany, I realize how absolutely clueless I really am. But alas, I’m learning, so thanks for coming along with me.

Anyway, chances are that if you’re reading this, you’ve helped me in some way during this experience. So thank you. You are important to me.