In the spirit of the holiday season, I want to send a little message out into the internet universe. I've been encountering a lot of stories lately (on social media, mostly in Pantsuit Nation groups) about people having trouble facing their families in this tense time, or trying to process and respond appropriately to hostility, judgment, and prejudice against them. This makes me sad, knowing that so many people out there feel isolated from their families, alienated because of their life choices, or attacked for who they are. It is incredibly painful to feel as though your core self, the person you know yourself to be, or the way you identify yourself within (or without) societal constructs is not respected or valued, especially by your loved ones. There is a kind of lasting damage to the soul when you feel inherently guilty for things about yourself you can't control, when shame or embarrassment or simply confusion overshadow your ability to stand proud and tall as your SELF. (For example, when you feel shame about your cancer, embarrassment about your bald and flaky scalp, or guilt that just maybe you could have done something to prevent this hereditary fate.)
So I say to you, no matter who you are or what it is that defines you: Stay true. Stay strong. Love yourself. Love yourself first. Love yourself the most. Embrace those things that make you “different”: the color of your skin, your sexual orientation, your gender identity, your (un)documented status, your religion, your ethnic background, something you might wear on your head, your (dis)abilities, your illness or health, and so on. Be yourself, and don't apologize. Wear your heart or your identity on your sleeve. (But also, in these contentious times, keep yourself safe - travel in groups, have plans for self-defense, be watchful, and don’t take unnecessary risks - and report anything resembling personal attacks or hate crimes.) Be proud to be you.
Don't let anyone knock you down. Don't let anyone tell you you're wrong, you're evil, you don't matter, or you should feel badly about yourself. Don't let others disparage who you are. It's true that “no one can make you feel inferior without your consent.” (Eleanor Roosevelt) But it's also true that no one can make you feel inferior without being a hurtful, unsympathetic meanie. You don't have time for those people. Steer clear, give yourself healthy distance, and surround yourself with better people.
In fact, surround yourself with all the things that make you happy. Choose carefully what you let into your life and your space and your time. Be mindful of how you're allocating your energy, and keep lots of it for yourself. If you find yourself feeling low, or doubting yourself, or listening to others’ hurtful words, take a deep breath, remember who you are, and return to yourself. You do you, girl. Yas kween.
I just spoke on the phone briefly with a friend who’s aware of my cancer treatment. I told her I’m at chemo infusion now (where I am, indeed, writing this). She said something I hear from others a lot, something about how it's notable that I just keep going, that no matter what difficult thing I'm in the middle of, I don't let it shake my attitude. This is true roughly half of the time. There are plenty of times when I let everything shake me to my core, when I feel I can't possibly keep going, or when my disposition is anything but sunny. But what gets me through and out of those times to the other side is usually a gentle reminder from my loving husband, who brings me back to myself, helps me re-center in a mindful place, and says or does something to make me feel good about myself. And then I remember just how much happier and healthier I feel when I am true to myself, when I ignore the negative voices in my head or from others’ mouths, and when I embrace the little things that make me happy.
So I extend this method of making mindful choices to all of you. This is my gift to you this holiday season: Love yourself, be who you are, and smile.
There’s not a lot I can say about the 2016 election that hasn’t already been said. One might argue that I shouldn’t say anything about it, because this is a blog about living with chronic illness, not a blog about politics or current affairs. However, there is a very important reason why I need to discuss the election here: This space is also dedicated to advocating for the rights and dignity of people with disabilities and illnesses, and while those rights and dignity are potentially under attack for the next four years, I will not shy away from the ethical challenges ahead. I will be as political as I need to be to stand up for what I believe.
Before we must face those ethical challenges here, though, I want to take some time to consider the psychological and emotional implications of this election for so many people who disagree with it - for roughly half of the country, to be fair. Somewhere in the countless personal accounts and policy analyses I’ve read over the last two weeks, I ran across the metaphor that the election of Donald Trump feels like a cancer diagnosis.
Let that sink in for a moment. My first instinct was to take issue at what I thought was a false equivalence. But when I thought about it more, I realized that it perfectly describes my own inner turmoil and heartache at the results of the election. Shock, despair, anger, hopelessness, fear, dread, resolve, adrenaline, and renewed passion. In many ways, it is as if I am living through my own cancer diagnosis again, with a totally different scope and context. It is just as terrifying and heartbreaking as my diagnosis with stage IV pancreatic cancer in January 2016, and no, you don’t get to tell me that I’m being melodramatic or a sore loser. Individual experience is an inalienable right. And I believe there are plenty of others out there who feel that they, too, are living through their own metaphorical cancer diagnoses right now, so I want to give them the space to process their own grief.
You have a day or two, maybe a week if you’re lucky, to process, to let it all sink in, and to make that crucial decision about how to proceed. As you process, you realize that a piece of your heart is missing, that some bit of your core self has been torn out and thrown away. You want to look for it everywhere, but you know it’s a lost cause, it’s already destroyed. Maybe you can slowly build some new little core piece to fill part of that void, but the wound will always be there. You will never forget how much this hurts, how deep the pain cuts. And the disorientation of it all - it’s a fever dream, a nightmare you can’t wake from no matter how hard you pinch yourself. All you want to do is duck your head under the covers and deny it all, pretend it never happened, lose yourself in inane videos of babies and dogs on YouTube, look at pretty curated hipster pictures on Instagram. But that’s only delaying the reckoning, and it doesn’t really make you feel much better because you can’t forget the truth, not even for a second.
You wonder what the next few years will be like - if you even have a few years. You’ve never faced such a challenge before, so you have no idea what to expect. But you have inklings, snippets of other people’s experiences that have stuck in your memory. You tell your friends that if you have to do chemo, you’re going to start smoking pot and wearing turbans, like a classy broad who doesn’t take shit. But the side effects your new doctor told you about are so terrifying, you can’t comprehend them: peripheral neuropathy, crippling nausea, decimated blood counts. And the hair loss that is surely to come, it won’t be pretty. How will you ever feel good about yourself again, when it seems the world is against you, your life has been reduced to a potential, a shaky prognosis? You already don’t feel like yourself anymore.
The unpredictability is startling. Sure, life is never really predictable, but at least in the past, you could make plans and generally see them through. Now you wonder if you’ll ever be able to go on a vacation again, because you have to save up all your leave time for sick time, and who knows how long you’ll last anyway? Will you ever get to become a mother, will you make it to your ten year college reunion, will you get to grow old with your spouse in peace? If you have to spend the next few years of your life, possibly all the time you have left, fighting for your very existence, where will the joy be? How will you ever be able to leave the house without doubting your ability to make it back in one piece? How will you go out in public and trust strangers again, without constantly wondering if they’re staring at you, and whether it’s pity or disgust in their eyes? Will you get to have fun, and what will that fun look like, if you’re constantly worried, anxious, afraid? Will your happiness be stolen from you altogether?
But then, miraculously, in the middle of all this despair and heartbreak and fearful panic, you realize that people are loving you. Sure, some people only say the wrong thing and continually make you feel worse, like this is your fault, or you’re stupid to be so scared, or grieving won’t help anything, or you’re doing it all wrong. But other people are showing you just how wonderful humanity can be. They’re coming out of the woodwork to say they’re with you, no matter what. They’re showing up, listening, looking you straight in the eye, and saying, “this sucks.” They get it. They’re scared too, they’re sad too. But the way to get through this, the only way that stands a chance, is together, with passion and the courage of your convictions. You hold tight to the hand of the person who is always at your side, the one who loves you no matter how bad things get, the one who understands your pain and admires your conviction. And together, you step forward.
You open your mouths and speak the truth. You make the hard decisions and take it one day at a time. You stand up for yourself, your right to live, your eternal dignity. You hold tight to what you know to be true. You resolve that even if you will be reduced to a statistic and ground down to nothing before your time, you will cherish every minute you have left. You will stand up for your principles, the things that make you you, the things that bring you joy, and you will live your best life. Because no one, nothing, not even cancer, can extinguish that flame.
Today, Thursday, November 17, 2016, is World Pancreatic Cancer Day. As I continue to process the slew of changes and challenges that have come at me in the last month, I want to take a moment to recognize this day. A worldwide day of advocacy and action like this is dedicated to people like me, and it means a lot to know that so many around the world are working to make my life better. I know I'm thinking of all the other current pancreatic cancer patients, as well as the small but growing number of pancreatic cancer survivors, worldwide. We are a mighty community, united by intimate, painful, and even life-threatening knowledge of this little organ wedged behind our stomachs.
I will post again soon, and I've been working on several posts for a while now. I have reached what feels like a turning point in my "cancer journey," where everything takes on a new urgency, and all manner of difficult questions are thrown into stark relief. Everything is okay, though, because I am still here and I am still living my best life every day.
About a month ago, my latest CT scan revealed that all of my tumors are growing slightly. This means that the chemo regimen I was on since February, GTX-C, stopped working (because my cancer outsmarted it). So, I've started on a different chemo regimen, FOLFIRINOX, which is just as scary as it sounds. Fortunately, this is standard treatment for pancreatic cancer, and I've met survivors who went into remission thanks to FOLFIRINOX. I've only done one round on this treatment so far, and it was really tough. I think I'm prepared to better manage the side effects for my next round, the day after Thanksgiving. But each chemo infusion is a crapshoot, because the effects are cumulative and there are so many factors that determine how I feel any given day. I definitely have enormous respect for everyone out there who does high-dose chemotherapy on a regular schedule.
This all has me thinking a lot about my mortality. Some of these thoughts are terrifying and heartbreaking, and others are shockingly matter-of-fact. I recently read part of the cancer memoir Malignant: How Cancer Becomes Us, by S. Lochlann Jain. The author, an anthropologist and cancer survivor, expresses the unique limbo of a non-terminal cancer prognosis:
"How could something be at once so transparent (you will live or die)
She also expresses the bittersweet gratitude I've been feeling in huge quantities lately, this joy at the beauty of life in every moment that is so delightful precisely because I know there is a limit to my moments. I want always to be grateful for the moments I do have, even the bad ones, even the tough ones, even the painful ones. All of it is life.
"Each morning that I wake up not dead or sick,