I miss this blog when I’m pulled away. Lately, I’ve been pulled away by both good and bad things: work, holidays with families, a long road trip, quality time with my husband, and of course, chemo and its aftermath.
I also have a new protocol before chemo infusions, daily Neupogen injections for three days early in the week leading up to my Friday infusions. Neupogen is a bone marrow stimulant, which does appear to be boosting my blood counts well, so that my numbers are high enough for the next round of chemo. Unfortunately, Neupogen causes fatigue and really uncomfortable bone pain, like sharp stabbing pains in my hips, pelvis, and spine. It generally makes me feel like I’m coming down with a bad cold or flu, which certainly isn’t fun when I know I have to end the week with disgusting chemo delirium. Also, the needle gauge on my Neupogen syringes is tricky, and I often have to grit my teeth and slowly push the thick needle in against the resistance of my own belly skin. Let me tell you, that’s the sort of thing that easily gives one the heebie-jeebies.
Fortunately, though, I’m on a more regular schedule now with the FOLFIRINOX, going every 3 weeks instead of every 2. This gives my body more time to rebound and rebuild my blood counts, and it gives me a little bit of a reprieve in between rounds. Tomorrow will be my fourth round of FOLFIRINOX, after which I’ll have a CT scan and follow-up with my oncologist. That, finally, will give us some indication whether the FOLFIRINOX is working, or at least working well enough to continue. I’m looking forward to this scan because it’s even harder than I thought it would be to put myself through poison hell without knowing for sure that it’s actually killing my cancer. But I’m also apprehensive about this scan because there’s always a chance it could reveal bad news, and send me right back to the drawing board. I need to be prepared for another shakeup, just in case I do suddenly have to switch chemo regimens again. But as much as I hate FOLFIRINOX, I think I’d rather settle into a routine with it than have to start all over again so soon. So I’m just waiting out my scanxiety, tiptoeing through it one day at a time, until I finally have the next benchmark of answers.
And as I prepare to spend New Year’s weekend zoned out and miserable, sleeping and dragging my “baby bottle” of cloudy chemo around on my shoulder until the home care nurse comes, I’m thinking about what it means to bring 2016 to a close. In many ways, this year has been the worst of my life. For many people, in many ways, 2016 has been particularly awful. I sense that many of us are ready for it to be over, thank you very much, and are eager for even a superficial reset in 2017. And of course, for many, the new year always means resolutions. I think I only have two resolutions for 2017: 1) honor my emotions with honesty; and 2) spend more time with friends and family. These are the priorities I find myself prizing nowadays anyway, now that I can’t even begin to guess how much time I have left in this life, and now that every moment of pure existence (especially moments free of medical encumbrances, pain, and side effects) is a sparkling gift.
Even though, or maybe because, 2016 has been the worst year of my life, I know it will stand strong in my memory for a long time. I’ve already recounted here a lot of my most memorable experiences from this year, since my cancer diagnosis in January 2016. But there’s one moment in particular that shines bright in my memory already, and I don’t think I’ve told anyone about it before.
It was probably late February 2016, after I’d started chemo and before I was ready to return to work. It was in the middle of my worst stretch of pain, treatment side effects, difficulty eating, weight loss, and general wasting away. But, I was somehow able to take a nice, long shower on my own, which felt like quite an accomplishment, and which helped me feel even the tiniest bit refreshed. I played music on my phone while I was in the shower, probably the Future Islands station on Google Play Music. Once I got into my bedroom and started getting dressed, the Arcade Fire song “Wake Up” came on.
I first heard this song on the soundtrack to the film Where the Wild Things Are, one of my favorite movies. I’m a children’s librarian, so it shouldn’t surprise anyone that I LOVE Maurice Sendak’s original. I also love the indie hipster film adaptation, which is a bit controversial. About a year after I graduated college, I was working in child care at a fitness center chain, and one of my privileges there once I became a supervisor was to pick which music to play when we opened on Sunday mornings. Without fail, I’d put in my own copy of the soundtrack on CD, and jam out to the wild and weird childish yell-singing of Karen O and the Kids (Karen O from the Yeah Yeah Yeahs). Something about it made me feel carefree and powerful, edgy and whimsical.
The soundtrack ends with “Wake Up” by Arcade Fire, and when that song came on my streaming music station that February day, I found myself alone with all my emotions, and with maybe just enough energy to dance around, just a little. I wrapped my arms around myself (my shrinking, shriveling self) and swayed, bobbing my knees slightly. I stretched my neck and legs, gently easing my limbs around, testing the waters of my unfamiliarly frail body. Eventually, as the music picked up, I started to feel looser, warmer, and just a bit stronger. I mouthed along to the words, too winded to sing, and the lyrics hit me. The enormity of what life had thrown at me hit me full force in that moment, and I let myself feel the epic weight of my stage IV cancer. I looked up to the ceiling and opened my mouth in a silent wail. As tears rolled down my cheeks, I extended my arms and slowly turned in circles in my bedroom, bouncing slowly on the balls of my feet. I wept for myself, dancing half-naked and eaten away by cancer, hiding out in my room, away from the world and all its harsh realities. But I also wept with pride, because I was still alive, I was still a person, I was still myself. By the end of the song, I felt, somehow, that I could do it, I could live through cancer, I could come out on the other side, I could be true to myself through it all. And this memory stands out to me now, as I think back on the enormity of 2016, because what I felt in that moment is exactly what has gotten me through this year:
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.
I have two younger brothers, both of whom are in good health. I feel only positive about this, and the fact that they are both healthy makes me very happy. I think sometimes about what would happen if either of them were injured or got sick, or if they developed any form of any of my chronic illnesses. Honestly, it would break my heart. I think their good health is a source of stability for me, something steady I can count on. But that’s probably unfair, because I wouldn’t want them to feel guilty for me if their good health ever changes. And there is so much guilt and pressure wrapped up in good health and ill health and the state of our physical bodies - not just for families of someone with chronic illness, but especially so.
My middle brother, who is about seven years younger than I am, called me recently to discuss a fundraising race he wants to run in the spring. He lives out west, where he’s able to do the outdoor adventuring that he loves. I consider him an athlete, although he doesn’t actively play one sport on a regular basis. He told me that he’s getting back into running, and he wants to take the opportunity of running this race in Idaho in the spring to raise money for a nonprofit connected to my health. He asked my opinion on which organization to fundraise for, and between the National Pancreas Foundation and the Pancreatic Cancer Action Network, we decided that PANCAN has easier options already set up to match what he’s trying to do. I thanked him for considering me in these plans, and for dedicating so much of himself to supporting organizations that are working hard to support me and others in my position.
He told me that he’s been thinking a lot lately about our genetics and what it means that he got lucky while I didn’t. He said he wants - maybe out of a feeling of responsibility or calling - to be able to put his good health to use, for causes related to everyone’s health. This is admirable. I can imagine that being so closely connected to illness while being personally healthy and fit might make one think a lot about luck and good fortune and whatever else you want to call whatever it is that determines these things. It’s true that both of my brothers could potentially carry the same genetic mutation I do, even though neither of them has manifested any evidence of the disease associated with that mutation. The fact that neither of them has, past the age of puberty, means it’s more likely that they don’t have this same mutation. But there’s no way to know unless they get tested, which isn’t clinically necessary. Similarly, there’s no way to know whether this mutation started with me, de novo, unless both of my parents get tested for it, which is also not clinically necessary (or covered by insurance). So we all live with some mystery, and make assumptions and decisions based on the clinical evidence presented. That’s really all anyone can do.
I don’t know what it’s like to have a sibling with chronic illness, especially in childhood. Over the past year, as I revisit my childhood experience of illness and reconcile that with new developments in my current health, I’ve thought about what it must have been like for my brothers when we were all kids and I was sick. When my hereditary pancreatitis first manifested, with acute pancreatitis when I was nine, my middle brother was about a year and a half old and my youngest brother wasn’t born yet. So, essentially, they both have known me to be sick their whole lives. I know this impacted them, at the very least on a logistical level, as I had so many doctor appointments and medications and spent time sick at home. Throughout it all, my parents had to divert attention to me, which I'm sure sure affected my brothers. Especially for my middle brother, my early illness directed the course of his young life to some extent. While I was in and out of the hospital for months at the beginning, he went to stay with our aunt and uncle in the next state, so my parents could be with me in the hospital. He may not have noticed or minded this much, being so young, but I’ve studied early child development enough to know that everything impacts a person’s development between the ages of zero and five. We are all fortunate that we had loving and generous family close by to help out, and there are many ways in which my parents and I got through those early experiences of my illness because of the kindness and goodwill of our “village.” I don’t know, though, what this experience meant for my brother, and he might not really know either.
And now both of my brothers have to live with the fact that their sister has cancer, and at a young age for all of us. I don’t know what this is like, either. But I know that they have both been there for me in very significant ways since my diagnosis, and this means a lot to me.
My grandfather commented on my last post that he doesn’t like to say that he’s “blessed” with good health because “that implies that those who don’t enjoy good health are ‘cursed’ with bad health.” I agree completely with this sentiment, and I don’t feel that I have been either cursed with bad health such as pancreatic cancer or blessed with the good fortune of avoiding death so far and finding success in my treatment. I believe that these things just are and we can’t control what happens organically to or in our bodies. No one is to blame for these things. There is no point in looking backwards, trying to trace lines of cause and effect for “fortune” or to find “reasons” why “bad” things happen to “good” people. Life just is.
I’d like to close with two quotes from my favorite Buddhist teachers, Pema Chödrön and Thich Nhat Hanh. I know Buddhism isn’t for everyone, but I find a lot of comfort in it:
“Letting there be room for not knowing is the most important thing of all. When there’s a big disappointment, we don’t know if that’s the end of the story. It may just be the beginning of a great adventure. Life is like that. We don’t know anything. We call something bad; we call it good. But really we just don’t know.”
“If you can accept your body, then you have a chance to see your body as your home. You can rest in your body, settle in, relax, and feel joy and ease. If you don’t accept your body and your mind, you can’t be at home with yourself. You have to accept yourself as you are. This is a very important practice. As you practice building a home in yourself, you become more and more beautiful.”
Caregivers are essential to living well with chronic illness. No one should have to live with chronic illness alone. Unfortunately, I’m sure that happens all too often. I don’t want to imagine my life with chronic illness without caregivers, especially without my husband.
A good caregiver gives care whenever it’s needed, just knowing what you need and when. A good caregiver gives care without asking for anything in return, without waiting for special recognition, without making you feel guilty, and without waiting for you to shake it off and get back to work carrying your share of any burden. A good caregiver provides affection in the little moments, to remind you that you’re human and you deserve love. A good caregiver sticks up for you to others, describing your lives honestly and representing your illness the way you would yourself. A good caregiver gives care even when it’s really hard, and even when they have their own care needs. A good caregiver knows where to turn for their own care, whether it’s to you in the right moments, or to another loved one. A good caregiver maintains his or her own interests and activities outside of caregiving, and realizes that sometimes he or she will have to sacrifice these and other needs, at least for a little while. A good caregiver makes sure you know you can always turn to them, with honesty and openness, to express whatever you are feeling. A good caregiver lets you be morbid and depressed without making you feel badly about it. A good caregiver lifts your spirits with exactly the right reminder for you of how much love and life there is in the world, even around the edges of chronic illness.
My husband, David, is the ultimate caregiver, because he does all this and more, and because he is also my best friend and my partner. I am so lucky to have him by my side. I truly wish the same good fortune to everyone else who is living with chronic illness.
I’m also very lucky to have many other caregivers: my parents, my local family, my extended family, and my friends. Just as it takes a village to raise a child, in many ways, it takes a village to care for someone with chronic illness. It takes caring calls and messages from family and friends, it takes unannounced visits with ready-made meals, and it takes visits from friends just to talk and be. These people are good caregivers because they allow me to live my truth my way. They listen, they don’t push, and they accept whatever I need in the moment. This kind of treatment from caregivers goes a long way toward reducing guilt, which is a central problem to life with chronic illness. These caregivers make it possible to continue to live a full, good life, with chronic illness at the center.
Tonight, for the second time, I attended a local event put on by an integrative wellness center, hosted by a yoga studio. It’s a gathering of several practitioners, with their tables circling an altar in a large open space, and clients drifting in and out. The proceeds go to a different local nonprofit or community organization each time, which can really mean a lot here in Baltimore. At both of these events I've attended, I’ve been struck by the peace, the gentleness, in a room full of people gathered together for healing.
The only light comes from candles and the summer sunset, someone plays a singing bowl every few minutes, and the whole room smells like burning sage. There are crystals and essential oils scattered over a blanket on the altar, with meditation cushions surrounding it. People filter in and wander to a spot around the altar, then pick up a crystal or two or add their own, rub a little of an oil into their hands, and quietly rest in this circle until it’s time for their session. It’s calm. Everyone whispers. Everyone smiles slightly at each other, but no one tries to make conversation. We just let each other be. This is one of the most comforting and caring environments I’ve ever experienced. It feels like a place, a space, a moment where I can really heal.
The practitioner I’ve seen both times does integrative body work, which I don’t understand, but which I appreciate greatly. In the simplest terms, it’s a gentle massage. Maybe one could even call it a laying on of hands. Her hands are warm with energy, and I can feel it vibrating, almost shimmering. She holds my skull or swivels my arm within my shoulder joint, and I shift, for those few moments, into a different plane of awareness. It’s like simultaneously being fully present in my body and fully surrendering my body. I try to concentrate on my breathing and stay mindful in each moment, sensing my energy as she moves it around. This makes me feel totally focused on my physical self, every sensation of my flesh and blood. But in order for her to move and heal my energy, I have to let go of my own muscular agency, I have to let her pick up my leg and move it independent of my own physical will. This double consciousness is incredibly helpful to me.
In Eve Ensler’s memoir, In the Body of the World (which I will quote continually), she describes how cancer brought her into her own body, and pulled her away from her coping mechanism of detaching her mind and emotions from her physical self. Suddenly, she could not help but be aware of her body. Suddenly, she had to learn her body, pay attention to it, take care of it, and sometimes watch it wither in severe sickness. Her writing is shockingly visceral, and she does not shy away from the often gruesome realities of advanced uterine cancer.
I first read this book in the summer of 2015, before my own cancer diagnosis, but in the middle of the string of complications that led up to my diagnosis. Pancreatic pseudocysts, several painful endoscopic procedures, jaundice from a blocked bile duct, and the eventual metastasis of my cancer into my liver (masked at first by liver abscesses that landed me in the hospital for a week) left me feeling lost within my pain. I was hyperaware of my own physicality, but scared of it at the same time.
Maybe, when you have chronic illness from a young age or for a long time, you become adept at tuning in to your body. I have trouble remembering any time in my life when I did not know exactly what my pancreas felt like, deep inside my abdomen, or when I could not identify and describe the exact nature of my pain. Unlike Eve, I sometimes felt too present within my body. But this bodily awareness did not inherently mean I was mindfully present, or that I tuned in to my body with love and compassion. Often, it has meant that I fixate on negative or painful physical feelings, and react with anger and self-rejection as soon as I notice them. I habitually tune in to symptoms, not sensations.
So for me to be able to let go of my body while also feeling it on a deeper and more positive level is a true gift. I think it might be my source of healing. I also think there must be a way to access this more often, and on my own. I have not found it yet, but I will report back here if I do.