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.
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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. Sometimes, when you have chronic illnesses, it is possible to escape your reality, just for a little while. Sometimes the stars align just enough for you to try something new, live fully, and lose yourself in an experience. In these moments, maybe even these days if you're really lucky, you forget about your illnesses for so long that you can almost believe they're gone.
This weekend, my husband and I went on a brief trip to Brooklyn. We stayed at a trendy hotel in Williamsburg, saw friends in and around the city, ate good food, enjoyed each other's company, and celebrated his birthday. Although certain aspects of my illnesses were present with me throughout the trip (like getting low blood sugar walking around in the heat Friday afternoon, or having to take pain pills each night because the unfamiliar bed hurt my pancreas), I almost felt normal. Even though we talked openly about my cancer and its harsh and boring realities with our friends, I also felt a little bit like my old self, my self before cancer. I could do things, I was capable and game, I was able to stay out late and have a really great time. These are not small accomplishments when you're living with three serious chronic illnesses. And this respite came just in time, because tomorrow, on my husband's birthday, I am going into the hospital for a procedure that will probably lay me out for a week. Because of the chemo, my platelet count is persistently low, and is currently too low for me to continue my treatment. Also because of the chemo, my spleen is slightly enlarged, and apparently retaining the platelets I need to rebuild my blood count after chemo infusions. As I understand it, the bone marrow produces new blood, and the spleen and liver are stops along that blood's journey throughout your circulatory system. If the spleen gets irritated or inflamed, as mine is, then the new blood can't progress through it correctly. However, some doctors have discovered that certain spleen treatments that patients need in other cases happen to cause a dramatic increase in platelet count. So, this side effect for others is the intended result for me. This means the procedure I'm having isn't standard practice for cases like mine, but is rather a creative and alternative treatment my doctor can offer because he thinks outside the box of standard pancreatic cancer treatment. It's not a dangerous or experimental procedure, it's just not usually used for cases like mine. It's called a splenic artery embolization. An interventional radiologist will go through the artery in my wrist with a catheter (I presume), snake his way to my spleen, and purposefully block the artery's path into part of my spleen. He's using some kind of a compound that's usually used for brain vascular procedures, which will expand and fill this branch of my splenic artery. Over the next several days, then, about half of my spleen will die from lack of blood supply. This will reduce the overall inflammation and make the spleen release the platelets it's retaining. This has proven so far to be a fairly durable procedure, with stable platelet counts lasting at least a couple years. However, at Johns Hopkins, they've only done this procedure in cases like mine for 12 other people, and none of them have been diabetic. There's a risk of infection after the procedure, either from the procedure itself or from the dying spleen tissue. For me, this risk is increased because being diabetic (especially insulin-dependent) increases your general risk of infection. And then once I start back on chemotherapy, my risk will increase again because chemo depletes your white blood cells (which fight infection). But there's no way to know how great my risk will be. And it appears there's no way for me to continue on any chemotherapy treatment if we can't get my platelets high enough for a sustained period of time. So, in order to go back on the debilitating treatment that's slowly saving my life, I have to admit myself to the hospital so I can have half of my spleen killed. And then I'll stay overnight in the hospital on a Dilaudid PCA (patient-controlled analgesia) pump, and go home with some kind of narcotic pills to get me through the pain of waiting for half of my spleen to die. This is supposed to take two to seven days. I've given myself seven days off work, and virtually nothing to do but sleep and read during that time (if I'm not too drugged to read). I have friends and family scheduled to visit throughout the week, which will be lovely. I have some soft and gentle food to eat, like chicken stock, apple juice, boxed organic soups, and crackers. I have three much-anticipated books I just checked out from the library, and a couple episodes of The Great British Baking Show saved up. To be honest, I'm pretty excited about the Dilaudid pump. The last time I had a PCA was when I was nine years old, in Children's Hospital in DC for the acute pancreatitis that eventually turned into recurrent, then chronic pancreatitis, which later led to my diabetes and now my pancreatic cancer. The pump then was morphine, until I had so much of it I could no longer tolerate the severe itching it caused (now I'm morphine-intolerant). Dilaudid, as many with illnesses or injuries know, is the most wonderful of all prescribed drugs, not only because it does give you a lovely high, but more importantly, because it works incredibly well to knock out pain. The low-dose Oxycodone I've been taking for pancreas pain off and on for months now is not nearly as effective. So even though I'm anticipating brand-new severe abdominal pain from my poor dying spleen, I'm relieved to know that I'll be getting enough of the good stuff to wipe the pain away. So I'm prepared, and I don't think it will be terrible overall. But really, this whole situation is ridiculous. I'm intentionally killing half of one of my organs, just so I can keep sucking in more poison. This is the life of the cancer patient. A coworker just sent a link to me, to today's Fresh Air interview with soul singer Sharon Jones. I'll admit that I hadn't heard of Sharon Jones, or her band The Dap-Kings, before today. But I'm glad I know about her now. Jones was diagnosed with stage II pancreatic cancer in 2013. She had major surgery followed by chemotherapy, but the cancer came back again. She's now back in chemo treatment, but continuing to work hard as a musician, recording and performing, even with her trademark energy and stage presence. There's a new documentary about her, Miss Sharon Jones!, directed by Barbara Kopple.
Although our pancreatic cancer diagnoses are different (and every person's cancer is different), many of Jones's experiences resonate with me. Terry Gross mentions a scene in the film when Jones forgot a few lines while performing. She told the audience she had chemo brain, and Gross says they were all totally with her, accepting and patient. I know that my friends, family, and coworkers feel the same way if I mention that I have chemo brain, but that doesn't ease my self-consciousness about it. Despite what some doctors still say, chemo brain is real. It's memory loss, it's confusion and difficulty focusing. It makes me feel, in a very real and very personal way, that I am losing bits of my brain every day. I have always been very intellectual and analytical, and I'm not too humble to say that I'm smart. But in the last several months, I can feel that slipping away from me. Shortly after I started chemo in February, I realized that time had started passing differently for me. Sitting in my favorite armchair, reading, watching TV, or just being, I would look up from my dazed reverie and realize it was hours later than I thought. At other times, I would feel each minute repeating over and over, dragging on, but not as though I was bored or antsy. I just had no consistent sense of time anymore. Time was slipping and retreating, then coming back to catch me unawares. Now, feeling older than I should at 30, I find myself standing in the middle of another room in the house, with no idea what I'm doing there. I think of something I need to do while I'm doing something else, then immediately forget the remembered task once I finish the task at hand. Sometimes I have to think of the same simple thing many times before I remember to actually do it. Just yesterday, I went to work with my husband's keys in my handbag without realizing it. The night before, when we came home together from a doctor appointment, he left his keys in the front door while he greeted our dog. I remember pulling the keys out of the lock, but I have literally no memory of what happened after that or how they got inside my bag. Whatever happened, apparently I immediately forgot. And I used to be very skilled at multitasking and time management. I used to be able to engage in highly abstract discussions of philosophy and critical theory. Now I have to stretch my brain to stay focused on one simple work task for any extended period of time. And after thinking hard, I often feel tired and headache-y, like I've been squinting at a tiny screen for days on end. I hate having chemo brain. Jones also mentions in the interview that when she's on stage, the pain is gone, because the energy she gets from performing either masks or relieves it. But she often has to pay for it soon after, maybe even right when she steps off the stage. I certainly know this phenomemon, since I often become unaware of my pain when I'm busy at work or focused on some kind of physical activity. Sometimes I can distract myself from my pain with focused mental activity, but the physical kind seems more effective. Of course, I can't always do physical activity, depending on my pain and other symptoms, but when I can, I often notice somewhere in the middle of things that I can't feel any pain. For example, earlier this week I presented story time at my branch. I had to move furniture to make room for the program on the floor, and then set up my carpet squares, flannelboard, and display books. During my set-up, I had pain off and on, but during the story time itself, as I sat on the floor and projected my voice and jumped and danced around with shakers, I couldn't feel a thing. Within a few minutes after finishing the program, though, as I was packing up and rearranging the furniture, it all came roaring back. And for the rest of the day, I certainly felt the effects of that intense physical activity, as distracting and enjoyable as it was. At another point in the interview, Jones describes how cancer has changed her. She notes that her hair is gone and her energy is not the same, so when she performs now, she feels like she's a different person. I completely understand what she means. Cancer can't help but change who you are, in superficial details and, I think, in some fundamental way. But they're not all bad changes. Maybe cancer makes you more mindful, more appreciative, better at prioritizing and saying no. Maybe cancer makes you stronger, as our society loves to believe. Maybe cancer makes you a softer, calmer person. But really, no matter what you do, as Sharon Jones says, "the cancer is here." In the three-ish weeks between my cancer diagnosis and the start of my chemotherapy, one of my sudden preoccupations was hair. Maybe not so sudden, since for years I’ve enjoyed trying different hairstyles and products, searching for inspiration on Pinterest and reading articles on the Curly Girl Method and microfiber towels. But now I was obsessed with finding new ideas for short hairstyles, head wraps, and chemo scalp care. Nothing about my hair was changing yet, but I decided I needed to change it. I knew it would be falling out soon, at least somewhat, and I couldn’t stomach the thought of my thick shoulder-length falling out in clumps. I’m sure I also wanted to mark the change in my sickness and take control of some part of my body. So I went to a salon in Roland Park and got my hair chopped off into a pixie cut. I had never before felt confident enough in my face to go for such short hair. When I was overweight before, I tried to grow my hair longer or style it fuller, to cover some of the chub in my cheeks and chin. But cancer sucked all that chub away and I found, almost overnight, a much thinner face in the mirror. In fact, in those early weeks when I was getting my port, preparing for chemo, and still dealing with a lot of pain and nausea, I was so dehydrated much of the time that my skin stretched dryly over my jaw, parched and sunken. I knew I looked unhealthy, but I still felt newly beautiful. Thank you, society. I was pleasantly surprised to find that I loved having short hair. It was so much easier to clean and style, and everything about it just felt effortless and cute. I got used to it pretty quickly, even though I’d always had a habit of twirling bits of my hair around my fingers when I was bored or deep in thought. Short hair was easy, it was comfortable, and it helped me fear my inevitable hair loss less. It worked for me, and it worked really well. Until it didn’t. Probably four weeks into my chemo, my hair started to change. My scalp got tingly and sensitive, always feeling like I was pressing a cowlick the wrong way, or like I had raging hat hair. A new forest of flyaway hairs sprouted all over my head, like Seussian fluff waving in the breeze. Combing my hair was dangerous, and showers became agonizing. No matter how careful I tried to be washing my hair in the shower, I started losing multiple fistfuls of hair every time. My growing collections of fallen hair on the bathtub rim, and the thick coating all over my palms every time I ran my hands over my head, sickened me. I wasted water just standing in the shower, trying to clean up this tremendous loss. When my hair was dry, it shed constantly, and I had to grab handfuls of flyaway hairs off the sides of my head, to avoid looking like a demented clown. The volume of loss was startling. It was all too visceral.
One day, after another soul crushing shower, I spontaneously buzzed my hair all the way down. I had stepped out of the shower and tried to comb what was left on the crown of my head into some respectable comb over, and got so incredibly sick of it. I pulled out my husband’s Wahl trimmer and the number four attachment, and stared hard into the mirror. Suddenly nervous, I pulled up the YouTube app on my phone and searched for helpful videos. There are actually a huge number of YouTube videos of women buzz cutting their hair, as tutorials or triumphant celebration videos. I watched parts of a few to get the general idea of the best technique (try to do it evenly, in sections, but you can always go back and clean it up), and to get pumped up for my own impending triumph. My heart racing and my hands slightly shaky (although they almost always are, because of my diabetes), I looked myself straight in the eye and buzzed down the center of my head. That first pass was exhilarating, maybe even a revelation. It taught me that I can do something brash and reckless, and that I don’t have to let my illness just make me sad. It also taught me that lady buzz cuts are kind of sexy. I trimmed and trimmed my hair, shaving off the clumpy mess and carving a patchy field of sparse red tufts. I worked until I was almost late for my acupuncture appointment, then threw on one of the polyester turbans I had just ordered from Amazon and ran out the door. Arriving a bit out-of-breath and frenzied, I told my acupuncturist what I had just done, and pulled the cap off to show her. She complimented the new cut, but I think even if she hadn’t, I would still have felt beautiful and powerful, and least for that triumphant day. |
Authorchildren's librarian, Smithie, writer, reader, cook, gardener, cancer patient, medical oddity, PANCAN patient advocate, #chemosurvivor, #spoonie Categories
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