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.”
In mid-January 2016, I went in to the Johns Hopkins Hospital for an outpatient Interventional Radiology procedure, a liver biopsy. There were several spots scattered throughout my liver, showing up on scans and growing despite the antibiotics that would have cured them if they were just abscesses. My mother-in-law happened to be visiting when my biopsy was scheduled, so she and my husband, David, and I trudged through the confusing pre-procedure testing at the Outpatient Center, an odd building built like an airport terminal. When we finally got into the Interventional Radiology procedure area, David and I sat together and listened to the consenting doctor’s description of what they were about to do, without it quite sinking in.
Probably because I was slightly in shock at needing a biopsy, I hadn’t given much thought to what it would mean to biopsy the liver. If you just think about it, though, you realize how harrowing it is. They need to remove samples of tissue from within the organ, which is large but is nestled up under the right ribcage. This means that they essentially need to stab you with hollow needles, repeatedly in your right side, until they get enough tissue samples for a full biopsy. They use ultrasound to locate the right spots to stab, and I think they did some kind of cursory testing on the samples they removed elsewhere in the room, to make sure they were getting enough of the right tissue. If I remember correctly, they targeted two of the spots in my liver, one toward the front just under my lowest rib, and the other on my right side, a bit farther down my abdomen.
They gave me mild sedation to calm me down, but they certainly didn’t put me under. I think I even had to ask for local anesthetic, something the woman who scheduled my biopsy over the phone had recommended. I can’t imagine why they would ever do this without local anesthetic at the very least. At first it all seemed okay, as they positioned me halfway onto my left side, with my arms overhead, holding the stretcher railing or something. But I quickly realized it was not okay, and my terror and discomfort broke through the sedation.
I don’t remember a lot of the worst details, but I do remember clutching David’s hands as he stood by my head (this wasn’t only traumatic for one of us), whimpering with tears streaming down my cheeks, saying something like “no, no, no,” or “stop, stop!” Imagine being tricked into being stabbed by a team of medical professionals taking turns to reload their hollow needles, as everyone in the room pretends it’s perfectly normal. It was exactly that horrific.
Afterwards, my mother-in-law joined us in the recovery room, where I continued to cry and whine. I was having trouble breathing, with sharp pains shooting through my right side whenever I inhaled. The nurse told me they must have hit the bottom of my lung in the procedure. This seemed particularly nefarious, and I became even crankier. As I’m sure everyone else who’s undergone multiple medical procedures knows, it’s hard always to be proud of your behavior while under sedation or anesthesia. I know I was a real pill that day.
I recently had my second run-in with Interventional Radiology. I really try to give them the benefit of the doubt, but they are not my favorite branch of medicine. Admittedly, I think they must have horrible jobs, because they routinely stab sick people and wind catheters through their arteries and who knows what else. I guess somebody has got to do it.
For this recent procedure, my splenic artery embolization, they told me beforehand that they would use twilight sedation. This reassured me, because every time I have twilight sedation for endoscopic procedures, I fall asleep all at once and wake up later in recovery, with no memory of the procedure itself. Of course, with Interventional Radiology, things weren’t so smooth and comfy. I was calm and quiet in the procedure room as they situated me and hooked everything up. They positioned my left arm on a board sticking out from the side of the table, so they could access the artery in my wrist and travel down to my spleen. Around that point, I felt all ready for the sedation to kick in. They gave me the first round and I felt calmer, maybe slightly sleepy. But I certainly wasn’t going out. I think I might have said something then, or maybe it wasn’t until I felt them start to work on my wrist, which they’d already numbed with a topical anesthetic in the prep room. By the time I realized they had started and I was still awake, I spoke up, but with difficulty. It was like wading through mud to get the words to the front of my brain, then onto my tongue, then out of my mouth. And when I finally did say something like “When am I getting more sedation?” or “I’m not asleep yet,” I sounded ridiculously quiet, like my voice came from the bottom of a well. I think I cleared my throat and tried again. I remember speaking maybe three times, and I remember being acknowledged at least once, as someone in the room struggled to hear and understand me. But maybe I’m wrong about all of this. It’s such a fuzzy memory.
Eventually I did wake up in recovery, so they must have successfully knocked me out at some point. But again, I felt unreasonably cranky in recovery, annoyed beyond belief that I hadn’t gotten the nice, soft, cozy sedation I’d been hoping for. I wasn’t in a lot of pain yet, but my whole left arm hurt, and this made me incredibly frustrated. I complained and waited for more pain medicine, which finally did come. But unfortunately, it didn’t take long for me to discover that a Dilaudid PCA isn’t as great as it sounds. When it only dispenses 0.2mg every 10 minutes or 6 times per hour (and only when you press the button, so tough luck if you fall asleep for more than 10 minutes), it can take an hour and a half to build up enough of a dose for real pain relief. I spent the rest of that day and that night in the hospital sleeping fitfully and trying to get over my annoyance that I wasn’t getting hit with those glorious waves of Dilaudid candy fluff you get with a 1mg IV push. But I went home on Dilaudid pills, which worked so well (much better for me than Oxycodone) that I’m using exclusively Dilaudid now for my routine pain management (combined with Tylenol and Ibuprofen, but no other narcotics). Still, my experiences with Interventional Radiology have been less than stellar.
After the liver biopsy in January, It took at least several days before my pain eased and I could catch my breath. And during that time, I began to consider what it really meant that I had just had my liver biopsied. If it was cancer, it was probably pancreatic cancer, considering my medical history. And if it was pancreatic cancer in my liver, that was not good. I remembered Eve Ensler’s cancer memoir, In the Body of the World, which I had listened to on audiobook the previous summer. At one point shortly after her diagnosis with uterine cancer, she thinks, “I know about the liver. Once the liver goes, the whole story goes.” I kept thinking of this during that week in January, waiting to find out if there was cancer in my liver too.
Finally, four days after the biopsy, on Tuesday, January 19, my GI surgeon called me with the results late in the afternoon. I had gone to acupuncture that morning with my aunt, who visited to be my chauffeur and companion. That afternoon, the therapist I’d recently started seeing came to my house for a session (out of her own generosity, since I was dealing with so much pain and medication then that I wasn’t driving). After that session, I took a nap, listening to a guided meditation on my phone. When my phone rang, I awoke from a deep and confused sleep, answered my phone, and heard Dr. Hirose’s voice tinny and distant, as if through water. I was so out of it that it took a few moments for me to realize that my headphones were still plugged in. Once I figured that out and got on the line with him, it took another few moments for me to realize what he was saying. They had found adenocarcinoma in my liver, in multiple spots. It was malignant. It was cancer. He didn’t have any more information than that, but he had scheduled me an initial consultation with the Pancreas Multidisciplinary Cancer Clinic at Hopkins, part of the Sidney Kimmel Comprehensive Cancer Center, for the following Tuesday. That left me a week to absorb this news, while still waiting to find out what kind of cancer I had and how serious it was.
I don’t remember if I cried then. Eventually I got out of bed and went downstairs to find David. As I was coming down the stairs, someone knocked on the front door. I think it was one of those Verizon sales calls they make on blocks that are wired for Fios. It was something like that, something meaningless and intrusive, that I had to smile weirdly through until the person left a minute or two later. Then we closed the door and David sat back down and I turned to him, probably with a look of utter devastation on my face. I sat on the ottoman at his knees and said I had to tell him something. I barely got out the words “I have cancer” before I started crying, and we held each other and tried to understand our new lives.
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.
Whole chunks of my life have been given over to narcotics. When I was first sick with pancreatitis as a child, I was so drugged for months on end that I basically remember none of it. Or I remember tiny sensory details, like the weird modern geometric pattern on the curtains in my rooms at Children’s Hospital in DC. I remember that because I would literally spend days lying in my hospital bed, tracing the pattern with my eyes through my drug haze, trying not to think about my pain or my fear or my guilt or my nausea. I also remember that I would get little sensations in the tips of my dry fingers, where the fingertips meet the nails, like a spontaneous tightening of the skin. Probably also because of the drugs, I thought this sensation meant that God was with me, in the room at that moment, that the skin tightening signaled a divine presence. Honestly, I just needed to latch onto whatever my crazed mind came up with to comfort me.
But I don’t remember conversations with doctors or nurses or the social worker whose visits brightened my days. I don’t remember a single other child from the hospital, although I know I used to play with them in the common rooms. I don’t remember any of my many surgeries or procedures, or the recoveries afterwards, which included such specific medical humiliations as NG tubes and incision staples. Of course, maybe no one really has specific memories from when they were nine years old. And maybe I wouldn’t have remembered this anyway if it had happened at a different time in my life. It’s just odd to me the insignificance of the things I do remember, the things that escaped my drug-induced fog. I remember the slippery tactile feeling of the balloons we kept, deflated and flattened, in my sort of scrapbook about my time in the hospital, but I don’t remember the people who gave them to me. Maybe I’m wrong, but I feel that the drugs are to blame.
Narcotics have been both the necessary evil and the saving grace of my medical saga. There is no way to survive acute or chronic pancreatitis, countless procedures and surgeries, or certainly pancreatic cancer, without painkillers. When they work, they’re the greatest relief you could possibly imagine. You take a pill or push a button on your PCA or get an IV push if you’re lucky, and slowly, your insides turn frothy and everything fuzzes until your edges are indistinct and your pain melts down into some inaccessible place you suddenly don’t worry about. It’s probably not gone, it’s just that you can’t reach it. There’s a buffer between you and the pain, like pillowy quilt batting. This cotton moat fuzzes its way into your brain too, until you forget to even think about your pain anymore. You might remember that there was something bad not that long ago, something that gave you a yucky feeling. But right now all you can get to on the inside is candy fluff and a low, gentle hum of complacency.
But when they don’t quite work, you’re left in the limbo of simultaneous pain and dissociation. When you don’t get enough or the drug isn’t a good fit for you, your pain is still there, persistent and obnoxious, but it’s harder to figure out how you feel about it and what to do about it. You’re left in some kind of suspended state, where you can’t lower yourself down into blissful oblivion, but you’re still far from clear reality. In those times, you hate narcotics, because they’re a tease, because they were supposed to make you feel better but somehow you just feel ickier, or angrier, or sadder.
Also, you inevitably have to deal with the side effects of narcotics, whether they work or not. After a while, the flip side of the coin comes to call and you have to pay up, maybe with constant itching, or with nausea and motion sickness, and certainly with constipation and digestive trouble. Then, the more you take, the more your insides get stopped up, the more your body slows down into something halfway like hibernation. The weird thing, though, is that narcotics actually raise your heart rate. When I’m on painkillers more than just occasionally, my pulse can rarely get below 100. So you’re pushed down into a dreamlike confusion of slowness and fuzzy edges, but your heart is working harder through it all. Really, they’re evil things, opioids.
This is why I’m seriously considering medical marijuana. It’s legal now in Maryland, and the last I heard, the oversight commission is reviewing applications for growers and dispensaries. So it’s not available yet, but it will be before too long. And if anyone ever qualifies for medical cannabis, it’s probably me, with pancreatic cancer pain, chemotherapy side effects, etc. etc. I don’t know much about medical cannabis, or the forms it’ll be available in, but I do have high hopes that it could help relieve my pain and nausea without causing the kinds of burdensome side effects that opioids cause. (It would be nice to have something to treat my pain that doesn’t also render my brain practically inactive, but maybe that’s too much to ask. Because of course, pain is all in the brain, so treating pain from any source requires targeting the brain.) If you know anything about medical cannabis, especially in Maryland, please share it here, for me and for others.
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.