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,
I’d like to provide some clarification about my intentions in writing this blog. I’ve noticed a common thread in many of the responses I get to this blog, and to my story in general. Note: Nearly all of these responses are in person or through private messages (don’t worry, folks, commenting is encouraged here!). This common thread is pervasive throughout our culture, and seems to have deep roots in several religious traditions. This is also not anything new to me, it’s just become more and more obvious to me this year, since my cancer diagnosis. And it stands in contrast to my own view of my illness and the reasons why I share my experiences publicly.
In writing this blog, I am not asking for pity, or comfort, or attention. I am not even asking for commiseration. I do not write about the hardest parts of my experiences of illness with the hope that others will read these words and somehow share the burden of my suffering. I am not putting all this out here wishing that you will relieve me of some part of my tragedy, or pray away my grief, or even “bear witness” to my pain and misery.
In writing this blog, I am not asking for pity, or comfort, or attention.
And that is because, as a person with chronic illness, my life is not one giant tragedy. My days are not suffering end on end. I live a full, happy life with continual ups and downs, just like any other human being. I am living well with chronic illness, no in spite of it. It’s just that the facts of my reality might be slightly different than yours, and the vocabulary of my regular experiences might seem foreign to you. But just like every other “sick person” out there, I am not a walking tragedy.
Just like every other "sick person" out there, I am not a walking tragedy.
The view of sickness, especially chronic or life-threatening illness, as abject tragedy comes from many sources in many cultures, throughout history. This view is also deeply ingrained in us, from our childhoods and from the traditions we inherit. It only just occurred to me this morning that Christianity, the specific tradition that I come from, carries many beliefs that position sickness as pure suffering, a cross to bear, or grief that others can pray away. Don’t get me wrong, I really do appreciate when others pray for me, because it means, deep down at the core, that they care about me and think of me kindly. But I don’t think I believe that sickness is inherently something that others need to bear witness to in order to ease my suffering, or that I should ask others for intercession to relieve my pain. While these ideas give people a way to care for those who are sick or in pain, they also create a binary in which sickness equals bad and non-sickness equals good. I’m only just beginning to see the far-reaching repercussions of that binary.
My own spiritual beliefs fall closest to the Buddhist tradition, and I find a lot of peace in Buddhist practices. So, I believe that there is a difference between pain and suffering. Everyone experiences pain in different forms; it is a fact of the human condition. But suffering is what we control. Suffering is the individual’s reaction to the reality of pain. As Tara Broch writes, “pain is inevitable, but suffering is optional.” Within that schema, illness is pain, not suffering. Sickness will come and sickness will go. Some will know it and some will not. This means that sickness is not, in itself, a tragedy. The body is impermanent, anyway.
So, why do I write this blog, then? To advocate, to normalize, to search for solidarity. Because I believe that people with chronic illnesses are not walking tragedies, I want to advocate for all of us, within the culture and traditions that so often respond to us only with pity. I want to raise awareness about the reality of illness, the truths that 117 million people in the U.S.* alone live with every day. We are more than our illnesses, but our experiences of illness still deserve to be talked about. If we don’t talk about these realities and try to normalize them, then how can our society view our experiences as anything but tragedy? To work to normalize chronic illness is to work to give everyone with chronic illness dignity and acceptance. After all, there is nothing wrong with us, really. We are just like everyone else. But there are still so many forces working against us, and so many of our everyday truths are still things that only those with illness understand. So solidarity between those living with chronic illness can help us feel better about ourselves, and not let those cultural traditions that see illness as an aberration or a burden overcome us with grief and self-pity.
So, why do I write this blog, then? To advocate, to normalize, to search for solidarity.
This means that I am asking you, dear reader, not to read about my experiences and think, “Oh no, well at least I can bear witness to her suffering.” I am asking you not to see my life as sadness and tragedy, but as simply a regular human life. I am asking you to share these experiences with me so that we can all work to normalize illness in our society, and advocate for the dignity of all those who live with chronic illness. Let me close by quoting the final paragraph of my own first blog post:
“If being sick is a core part of my self (which it absolutely is), then I cannot allow my sickness to be a negative force in my life. Self-respect and self-worth lead me to honor my sickness as simply my reality, not my burden or my shame. That doesn’t mean it’s all pretty, but that does mean it’s all true, and it’s all worth sharing.”
This past weekend was full of cancer events for me. First, on Saturday, I attended a free half-day conference hosted by the Johns Hopkins cancer center, “Surviving Survivorship.” The two sessions I attended were on fear of recurrence, and creative journaling for cancer therapy. Then, on Sunday, my family and friends gathered for the Maryland edition of the Pancreatic Cancer Action Network’s annual fundraising run/walk, PurpleStride. I’ll write more about both creative journaling and PurpleStride. For now, fear of recurrence.
Technically, I shouldn’t yet be suffering from fear of recurrence, because I’m not yet in remission. But I know enough about cancer, and I’ve read enough cancer blogs and cancer memoirs to know that it’s coming. I don’t see any harm in preparing for it now. The session at this survivorship conference I attended was quite useful, led by an oncologist who was initially trained as a psychiatrist. He asked members of the group to first share their visceral, sensory experiences of fear of recurrence (what did it physically feel like, what did it do to your body, what were your specific triggers), and then to share the techniques and tricks that have helped them overcome fear of recurrence. We discussed medication for anxiety (which I do take now, although it was prescribed mostly for post-infusion relief of anticipatory nausea, which often goes hand-in-hand with anxiety), as well as mindfulness techniques like measured breathing. It was a helpful session, and the general mood of the room seemed to be relief that we could talk about this, acknowledge that there’s nothing wrong with it, and leave with practical tools to draw upon the next time it reared its unfortunate head.
The truth is, though, that I long for the day when I can have true fear of recurrence. I dream of a time when I can think to myself, I’m in remission, and smile with relief. I dream of a time when my only cancer treatment can be biannual or even yearly CT scans and oncology check-ups. But I’m not there yet. I’m still actively in treatment, and my cancer is still very much here. At this point in my cancer experience, my anxiety doesn’t come from fear of recurrence, but fear of my next chemo treatment, and even worse, fear that I will never be in remission. Because my cancer is inoperable and my chemotherapy is open-ended, and especially because my doctors have specifically said that we’re treating my cancer as a chronic illness, I am afraid that there will never again be a time in my life when I don’t have cancer. Of course, there is no cure for pancreatic cancer now, but there are people out there - the 8% or even the 1% with stage IV - who survive past 5 years, and even make it a decade or more without active pancreatic cancer. As treatment continues to improve, those people may end up living multiple decades without active pancreatic cancer, and maybe even without recurrence. But the truth right now is that most of those people who make it past 5 years didn’t have inoperable stage IV pancreatic cancer. My case is advanced and difficult to treat. But then again, I also have the unusual advantage of being young. And my treatment is working so far.
Tomorrow I have a CT scan, my first since July and only my third since starting treatment. I really have no idea what it will show. On the one hand, my symptoms seem to be improving slightly over time, and I have been able to continue my treatment, which proved that it was killing my cancer in my last scan and in my history of lab reports. On the other hand, I had to take a long break from treatment since my last scan (for that spleen procedure to raise my platelet levels), and the last time my tumor marker number was tested, it had risen again, slightly (after dropping quickly from a very scary number all the way down to the normal range). This could be a blip, this could mean nothing. Or it could mean that there’s new growth somewhere, or that my tumors have grown or simply stopped shrinking. All of this uncertainty, and the possibility of bad news, is giving me what people in the cancer community call, somewhat affectionately, “scanxiety.”
Scanxiety is often experienced in conjunction with fear of recurrence, because people who are in remission begin to fear the possibility of recurrence most immediately before a scheduled, routine scan. But I’m finding now that people who aren’t yet in remission can also get scanxiety. Instead of being coupled with fear of recurrence, though, it’s coupled with fear of worse cancer - something that, as of yet, has no cute name.
Since realizing that I’ve been slogging through the mire of scanxiety for some time now, I’ve tried various coping strategies: mindful breathing, mindful walking, adult coloring books, collage journaling (at that conference workshop), distraction, quality time with loved ones, and a recent discovery that is bringing untold joy into my life, tiny cooking videos. Unfortunately, none of these techniques is really working for me, or working enough. In combination, the total effect does relieve some of my anxiety. But I think scanxiety might be the kind of thing you just have to live through, until the scan is over and you get the results. Maybe you can soften the edges of it, maybe you can learn to live with it, to welcome it like a seasonal guest, but maybe you just can’t shake it until the source is resolved. So I’m putting one foot in front of the other, one moment at a time, and holding out hope for good news.