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.
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Sometimes, when you have a chronic illness and you’re doing a pretty good job of living around it, living your life fully and well, it comes roaring back to remind you just how sick you are. In these times, simple things will become impossible, everything will hurt, and it will absolutely be too much to keep your eyes open. In these times, you will be unable to forget or ignore your illness.
I started back on chemo last week with infusion on Monday. Infusion went pretty well, and I wasn’t feeling too sickly when I left. Within a few hours, though, the nausea was hitting hard. For the first half of that night, I woke almost every half hour, sitting up in a panic as waves of nausea crashed over me. I’d lean forward over my bent legs, heaving and trying to catch my breath, until I could finally lie down again and immediately fall back asleep. Then, for the second half of the night, the nausea was like a constant wave and I couldn’t get back to sleep. It was like a demon inside me was trying to rip its way out through my esophagus, but another demon was holding it back, keeping it angry. I don’t know, that metaphor doesn’t make any sense. But I’m still very much in recovery right now, six days later. I emailed my doctors Tuesday morning to see if they could suggest anything I could do. They advised me to go to the chemo urgent care center at Hopkins. This made sense, but I had to figure out how to get myself there. I called my parents to tell them I would drive myself downtown, but they urged me to call an Uber instead. (I’ve been wary of Uber so I’ve never tried it before, but I managed to create an account and call a ride through my stupor.) My grandparents drove up from Annapolis to meet me at the hospital, and they arrived right when I was called back into the chemo suite, after waiting in agony for a while. In urgent care, they accessed my port and hooked me up to IV fluids, then gave me successive doses of Zofran, Ativan, and Phenergan, all of which did alleviate my nausea slightly. I’m not sure how many hours I spent there, because I was just sleeping in a haze of chills and medicine and the worst nausea of my life (and that’s saying something). My poor husband came straight to the hospital from his first day of the new school year (he’s a middle school teacher), brought me home and took care of me. The next day, I went back to urgent care for more of the same, and by the end of that day, I was finally feeling somewhat better. Or maybe not. I’m still so confused right now that I’m not a reliable narrator. Since then, I’ve literally been sleeping and trying to eat, that’s it. And this takes all of my energy, in fact, more energy than I have. I’m at a constant deficit. But it’s so hard to eat, so so hard that I’ve lost probably six or seven pounds in just as many days. I can keep things down, because I seem to have lost the ability to vomit, sometime when I was a child, sick in the hospital. I used to dry heave so much then that we’d lose count of how many times in a day my stomach contracted on itself. Somewhere among all that, I think the valves closed off or something, and I’ve never been able to throw up since then. But now, it just causes me so much discomfort to eat, that I really have to force myself. And I need to force myself, because I’m dangerously weak. I took a shower yesterday morning and almost passed out. The effort was so taxing, my body was so depleted, it was stunning. I know this is all very dramatic, but this has been one of the worst experiences my illness has caused in the last year. All I want to do is cry about it, but I don’t even have the energy for that. This all makes me feel pathetic. This makes me think I’m crazy for even trying to work, part-time or full-time. This makes me think, what if it’s like this after every chemo infusion? That’s impossible, I simply won’t do it. There has to be an alternative. I can’t live through this again. 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. |
Authorchildren's librarian, Smithie, writer, reader, cook, gardener, cancer patient, medical oddity, PANCAN patient advocate, #chemosurvivor, #spoonie Categories
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