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.
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.”
This week, the US presidential election has taken a turn that just doesn’t sit right with me. Disclaimer: I have strong opinions about this election, but I will do my best to keep this post focused on the topic of this blog. Please, share your opinions with me in the comments section.
Trump’s campaign has been raising questions about Clinton’s health for a while, and now that she is being treated for pneumonia, many Clinton opponents are seizing on this idea that she is unhealthy as an argument against her candidacy for the presidency. Meanwhile, there is much controversy surrounding both candidates’ medical records. Clinton has already released extensive medical records, and both candidates have released statements from their personal doctors attesting to their overall health. Trump was supposed to release his medical records on the Dr. Oz show this week, but has apparently backed away from that at the last minute. As Clinton takes a few days off the campaign trail to recover from pneumonia, the media continues to obsess over both candidates’ health and medical records, and recent polls indicate that many Americans have opinions about each candidate’s physical fitness.
All of this begs the question, what is the connection between health and strength? In our culture, does the presence of any sickness whatsoever disqualify someone from public office, or at least from our highest elected position? Can you be president and be “unhealthy” or live with illness?
I understand the basic premise that sickness that makes it difficult or impossible for someone to work would be an obstacle for the presidency, because the president needs to be able to work virtually 24/7/365. But I take issue with the concept that illness negates strength, or somehow makes someone weak or unqualified for an important job. I worry that negative views of Clinton’s pneumonia extend into public opinion of all public figures when they are temporarily sick, or even all people who live with chronic illness.
The irony here is that so many people in our culture also immediately use words like “strong” or “brave” to describe people who live with significant chronic illnesses. How many times have you heard someone with cancer or another life-threatening illness called a “fighter” or held up as a model of strength and courage for others? People tell me all the time that I am strong, and while I do agree with them, I don’t think it’s for the same reasons. They probably think I am strong because I don’t view my illness as a reason to give up on my life, because I keep going through it all. In fact, many of these people probably think I am strong simply because I continue to wake up every morning and live my life. They say things to me like, “I couldn’t possibly handle it the way you do,” or “I don’t know how you do it, you’re so strong.” Honestly, living with chronic illness is just the same as living without it, you just live your life every day. How do I do it? I take it one moment at a time and put one foot in front of the other. Does this make me strong by default? I don’t think so, I think strength means something more substantive than that. I think I am strong because I work a demanding job, do a lot of household management, have strong opinions about many issues, and don’t let people take advantage of me. I think I am strong because I have a master’s degree and a bachelor’s from a top-ranked women’s college (Smithie for life!). I think I am strong because I take a stand on social and political issues, and advocate for chronic illness and cancer research and patient support. I would like to be respected for my strength because of these accomplishments and actions, rather than from the mere fact of having chronic illnesses. I don’t want strength that comes from automatically ticking a box. I want the strength that I earn.
So when we call people strong simply for having a chronic illness, and also call a presidential candidate weak for having a temporary, treatable condition, how can we possibly make sense of sickness and strength? This is so jumbled and contradictory, these mixed societal messages. I don’t think I’m the only “sick” person out there who finds all of this disingenuous and hypocritical, who distrusts the societal message of “strong fighters” with chronic illness because at root, our culture really harbors such negative views of illness.
Does any form of sickness mean someone cannot be smart, capable, or a good leader? If working so hard that you contract pneumonia at age 68 means that you’re not qualified to lead the country, then what does that mean for the millions of Americans who have chronic illnesses purely by chance, not through any lifestyle choices or personal decisions? (At the same time, who cares how someone gets a chronic illness? The only attention paid to causes should be to find early detection methods and cures.) Are those of us who live with significant illnesses relegated to one of two lonely camps: either you brought it upon yourself and should be ashamed; or the best you can hope for is to be a saintly icon of superficial strength, excluded from work or any activities other than sitting around being inspirational? I, for one, refuse to accept any of this.
2015 was a year full of medical complications for me. Not that 2016 has been any different, but at least this year, there are less unknowns. In 2015, I faced pancreatic pseudocysts, persistent biliary strictures leading to jaundice (that went undiagnosed for too long), increased pancreas pain, four ERCPs (endoscopic retrograde cholangiopancreatography), and hospitalization from what looked like liver abscesses. After that week in the hospital in November, I went on heavy-duty antibiotics for about seven weeks. Once that course was finished and Infectious Diseases declared me highly likely to be infection-free but a CT scan showed that the spots on my liver had grown, my gastroenterology surgeon, Dr. Hirose, decided it was time for a biopsy. That liver biopsy was a traumatic experience in and of itself (one that deserves its own post).
During the week I waited for my biopsy results, I was lost in a miasma of fear. Anyone who has waited for biopsy results knows the feeling. For me in particular, there was a sharper, somehow more personal fear than if I had been in danger of any other kind of cancer. For example, if I had been waiting for biopsy results for possible skin cancer, I would have felt very differently than I felt waiting for biopsy results for possible pancreatic cancer. Of course, we didn’t know at the time what type of cancer it could be if it was cancer, but all signs pointed toward pancreatic cancer. Also throughout 2015, I had been in consultation for total pancreatectomy surgery at Johns Hopkins’ special clinic for this procedure, where Dr. Singh explained to me my theoretical risk of pancreatic cancer.
Patients with SPINK1 hereditary pancreatitis are known to have increased risk of developing pancreatic cancer. However, the particular risk for different genetic markers of hereditary pancreatitis is not always known. While there has been enough research on the PRSS1 mutation to know that it carries a very high lifetime risk of pancreatic cancer, there is not yet enough data to quantify the cancer risk for my mutation, PN34S. I think I remember Dr. Singh saying, as he literally sketched out these complex ideas on the paper exam table cover, that my lifetime pancreatic cancer risk was likely somewhere between 4% and 60%. This is a huge and vague range, but the numbers were concrete enough to bring the idea home to me: there was a very good chance I would develop pancreatic cancer at some point in my life. That’s why I was determined to pursue total pancreatectomy, my only chance of eliminating that risk. There was no way to know at the time that my risk was actually 100%. It’s even possible that I already had pancreatic cancer when Dr. Singh and I were discussing my risk in abstract terms.
So after my liver biopsy, I sat in waiting for a very personal, very real fear to come true: that my pancreas, which had literally sickened me for so long, could turn so very ominous. Since my diagnosis with pancreatitis at age nine, I have had a very complex relationship with my pancreas. It’s not even a love-hate relationship, which would make sense given the circumstances. Rather, it’s something more like a vaguely confused attachment. I’m sure people expect me to hate my pancreas, or at least to wish it gone. While I have certainly wanted it out of my body for over a year now, that desire has always had to push past my deep connection to my pancreas. Childhood illness has taught me to respect and value all parts of my body, because each organ and gland really does do incredible work every day to keep me alive and functioning. But the gland I feel the deepest attachment to will always be my pancreas. We are in this together, she and I.
But for that week of waiting in January 2016, I couldn’t quite stomach the idea that my pancreas would do something so horrible to me. It felt like a betrayal, and I didn’t want to think that my beloved partner organ could go rogue in such a big way. I thought I had tried to care for her, but now I wondered whether I had taken her for granted, or unwittingly thrown too much difficulty her way. Maybe my eight and a half years without pancreatitis symptoms (which had ended sometime in 2014) had left me lazy. Maybe my recent paleo diet had funneled too much fat through my gut to my beleaguered pancreas. Maybe I hadn’t thought of her enough lately, so she had retaliated. I’ve read enough cancer memoirs already to know that I wasn’t alone in feeling this kind of searching regret and bodily guilt.
More than anything, though, I didn’t want to follow my pancreas down this new road. I felt she was trying to lead me into a long and dark underground tunnel that I might never escape from. And I’m claustrophobic. At times I felt angry, thinking how dare she try to hurt me so much, how dare she try to pull rank. At other times I felt helpless, dwarfed in the shadow of my all-powerful pancreas. As it turns out, she just might hate me as much as I love her. She may have had it in for me all along. Or maybe she’s just as desperate to stay alive as the rest of me is.
Most of the time now, in spite of her supreme power to rule my life and health, I like to be sweet and gentle to her, to imagine her shriveled and shaking inside my upper abdomen, nestled against the back wall, just trying to make it.