In your first five years of living with cancer, numbers matter. Statistics inform your treatment, your doctor's recommendations, your prognosis, your mood on any given day, and your chances for the future. At the same time, statistics mean absolutely nothing because every individual cancer is independent and unique, and many people defy statistics. Also, if you have a particularly rare form of cancer (or a rare case of a relatively rare cancer, like I do), the shape and path of your cancer is likely not reflected at all in current research. Maybe your case will contribute to research, but that means that the numbers you’ll be able to find (or the numbers your doctor might, eventually, reluctantly reveal to you) really don’t apply to your case at all. You find yourself surrounded by numbers, some encouraging and some decidedly terrifying, but unable to reach out and hold onto to any of them, because there’s a very real chance that not a single one of them matters to your life.
This has been my relationship to pancreatic cancer statistics over the last year. I have sought them out, because I’m a naturally curious person, and because I found early on that the more information I had about my new medical reality, the calmer and more confident I felt. I have used them to explain my situation to others, and I have used them to lobby Congress for pancreatic cancer research funding. It is certainly compelling to state dramatically that my cancer, stage IV pancreatic cancer, has a five-year survival rate of only 1%. However, I know that I cannot put any stock in these numbers. Both because they may not be accurate for my particular case, and because putting stock in these statistics is dangerous for my mental health.
I can’t let myself think much at all about the possibility that I have only a 1% chance of living to see 2021. I can’t let myself imagine the chance that I might not live to age 35, or celebrate my 7th wedding anniversary, or attend any college reunions past my 10 year. I also can’t let myself worry that I might be in cancer treatment for the rest of my life, or that I’ll never get to have a child, or that I might never be able to get rid of my pancreas and thus slough off this burden that’s weighing me down from the inside. But of course, I do think about all these horrible possibilities. I think about them all the time.
Recently, my therapist asked me for a clarifying example when I mentioned that I’ve become much more conscious of my own mortality since my last CT scan, in October, which revealed that my first chemo regimen had stopped working and all of my tumors were growing. I told her that whenever I enter recurring dates in my work calendar, such as my story time assignments on our rotating department schedule or my monthly committee meetings, I find myself casually thinking, oh, might not make it to that one, or I wonder if I’ll still be alive then. These aren’t always negative thoughts, in fact, they’re often neutral, nonchalant musings. It’s not so much that I’m upset by those low-single-digit percentages in all the statistics, but rather that they are the context for how I think about nearly every aspect of my life now.
When I make plans for the future, or consider my priorities, or imagine how my life might change over the years, I am always conscious of that five-year frame around my future. In a sense, it has shrunk my perspective down to a smaller box, in which every small thing becomes larger by comparison, and the things that really matter glow so much brighter than they used to. Really, this smaller perspective on the entire span of my life makes it much easier to see quickly what truly matters to me. I don’t have to fumble anymore to figure out my priorities, and it’s easier for me to drop and walk away from the things that don’t make a difference to me in the long run. Because I may not have a long run.
In some recent FMLA paperwork that my nurse practitioner filled out for my husband and me, she listed my prognosis as “guarded” and my typical recovery period as “lifelong.” Those two little words can definitely make you stop and clarify your priorities pretty quickly. As I head into what will surely be a telling CT scan on Wednesday (the first since starting my new chemo regimen), I too am guarded. But I’m also living mindfully, cherishing every little moment of my lifelong.
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:
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.
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.
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.”