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A memory:
Once, when I was in college, I stole someone's jacket. Well, stealing is too strong a word, maybe. I went into the Commons (our on-campus dining hall) wearing the flannel jacket my mom had bought me back in California, mistakenly thinking it would keep me warm in an Iowa winter. On the way in, I hung up my coat, and when my friends and I left an hour or so later, I grabbed another flannelish coat on my way out. I wore this coat for an entire night full of the usual shenanigans like beating a path through the snow to a friend's off-campus apartment and back, heading to the library and later the chem lab to retrieve J, taking security stairs onto the roofs of buildings just because, making a grocery run in a friend's car with the defroster blasting away, etc. It wasn't until I was back in my dorm with my roommate that I finally unbuttoned the coat I'd been wearing all night and realized it wasn't mine. "Whose coat is this?" I demanded. S laughed. "I've been wondering that all night." First thing in the morning, sheepish, I returned to the Commons where my own lonely flannel was hanging and surreptiously made the switch. ** For almost two months, I have been wearing someone else's body. I mean this semi-literally, as a donor tissue recipient. In the morning, I shower, carefully dabbing around the scab on my left side that just won't fall off, and then I towel dry in front of the mirror, giving my alien body only shy, sideways glances. Dressed in my customary bookish tee and cardigan, I manage to feel normal all day long. I feel pretty good, even. It's not until late at night, when I trade jeans for PJs, when I shed the only bra that fits me (and even so leaves a small ring of bruises), that it hits me again. Whose body is this? ** Two weeks ago, I began hormone therapy with the drug tamoxifen.It's a small white pill, taken daily, but it's also a highly toxic, carcinogenic drug -- the pharmacist, handing it over, instructed me to wash my hands after handling the pill, and to not let anyone else in my household come into contact with it. Tamoxifen works like this: it blocks estrogen, which will prevent my estrogen-receptor positive cancer from recurring. (As Dr. N explained: the surgery is the cure; the treatment will prevent it from coming back.) With the hormone blocked, I can expect many of the symptoms of menopause, which since I'm knocking on the door of 50, are coming for me anyway. Before taking my first dose, I was assigned an "educational meeting" with a nurse in the oncology department. I sat quietly in the patient's chair while the nurse read off the list of side effects and warnings from her computer screen: hot flashes or sudden flushing nausea swelling of hands, feet or other parts of the body vaginal discharge and/or bleeding changes in mood irregular menstrual bleeding She told me to be on the alert for blood clots in my legs, cloudy eye lenses, changes in liver function. Further down on the list, it was noted that tamixofen can increase my chance of getting a second cancer, which seems to me highly unproductive. "I'm requiring a monthly pregnancy test," she continued, since tamoxifen can cause congenital deformities. I flashed back to my long medical history, the years of trying to get pregnant, and thought bitterly about how ironic life can be. "Do you understand?" she asked, probably for the second time, and I realized from my slow blinking that she might have thought I wasn't paying attention, which is fair. I get lost in my head sometimes. I cleared my throat. "I understand." She placed the paper into a very official -ooking folder, one I later added to my collection of official-looking folders dating back to my cancer diagnosis in September. I was sitting very quietly, digesting hot flashes and changes in liver function, when she added brightly, "Most people don't experience any side effects at all." Somehow I knew I wouldn't be most people, if that was even true. ** I have joked about hot flashes in the past, like how will I know I'm having a hot flash, since I'm always so warm? If you were unaware, I am a sweaty individual who has to suffer through six months of Central Valley summer every year. It takes all my effort to stop myself from whining every ten minutes about how hot it is. And where I live, it happens to not get very cold in the winter, either (**I will fight you on this, Californians, having lived in Ohio and Iowa**), so I don't require a winter coat, and a few years ago, finding no need for them, I gave up socks--except for the pair by my bed, which I slip onto my feet before sleep and then wriggle out of within the first hour. So what does a hot flash feel like? (If you know this already, feel free to skip ahead. For the uninitiated, this may be useful.) I've had only one so far, and it went like this: I was asleep, and then I was on fire. I couldn't see the flames, but they were there, devouring me. I had to kick off the covers, startling the rat terrier who sleeps at my feet, and I had the panicky feeling that I wouldn't be able to untangle myself fast enough. I glanced at Will, who was apparently not on fire, as I wriggled out of my PJs, and that's when my sleepy mind realized: hot flash. ** The worst symptom, by far, has been the nausea. As the oncology nurse explained, people who experience nausea from Tamoxifen have found it best to take the pill at night, since the effects are apparently lessened when the body isn't up and moving around. I've been taking the pill about half an hour before sleep, and the nausea wakes me an hour or two later. Not a stomach lurching, just an urgent feeling in the base of my throat. I've tried peppermint Tums, ginger drops (thank you to the person who mailed me those, seriously), sitting up, walking around, drinking water, reading (what doesn't that cure?), scrolling through reels that confirm my feeling that the world is going quite badly (not a good cure), and the last of the anti-nausea pills leftover from my surgery, all with very mixed results. Twice, I have felt like I didn't sleep at all the entire night and have spent the next day in a head fugue. Twice, in the middle of the day, I've had to rush to the bathroom to vomit, making it just in time. Mostly, I've been groggy, probably due to being up half the night every night. I made a silly error at the bookstore, for which the customer was very kind. I tackled very little from my weekly to-do list and then tried to do it all in one afternoon, which was predictably disastrous. ** I'm writing this in a coffee shop on a Friday morning, the first day all week I've felt like I have a clear head and a bit of motivation. I thought I picked a place where I wouldn't encounter anyone I know, but Modesto is a big city/small town, and so I ran into T, who has a nursing background and has worked as a public health official, and we started talking about my treatment. "How long are you on tamoxifen?" I grimaced. "Two to five years." She smiled sympathetically, and reminded me that my body will likely adjust. (The nurse said the same thing -- and if my body just can't do it, there is another path.) It's helpful, I know, to take a long view. Two weeks is not even a hundredth of the way into five years, a fact that's both encouraging and depressing at the same time. ** In the beginning, I wasn't going to share any of this. I was stunned by my diagnosis into a sort of numbness that was likely denial, a stage of grief. But then it became impractical and awkward to tell some people and not others, to field questions about why I wasn't teaching and wasn't in the bookstore, to run into people I knew in the waiting room of the breast health department and not say anything. And so, this blog. Last week at Thanksgiving, W told me that she had shared my blog with a friend who was recently diagnosed with breast cancer. It's humbling to think of any of you reading this at all, but it gives me just a little bit of pride to think that maybe, maybe, some of this could be helpful. Until next time, P.
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Today, I stripped the sheets on the daybed, boxed up the odds and ends from my recovery (several types of pillows, the black mastecomy cushion I wore like a security blanket for weeks, the binding bra that held everything together) and said goodbye to that period of my life. I'm back in my regular bed now, with Will and the pups and the ceiling fan and the stack of novels on my nightstand. I'm still supposed to be sleeping on my back, but most times, I wake up halfway on my side, and for a good long moment, I forget anything has changed about my life. As soon as tomorrow, I might be beginning hormone therapy. As soon as Thursday, I might be released for physical therapy. Life is moving on. ** Every night for the past few weeks, I've made myself a to-do list before setting my phone in its charger for the night. Some things are very small, easy to accomplish, and satisfying to cross off. Take a shower. Feed the dogs. Wash quilt. Some things are larger: submit an invoice, order such-and-such for the store, go through inbox. Every day, I do only some of the things, and push the rest forward. I'm acutely aware that it is a luxury to have more days ahead. ** Every day in this post-surgery life, I take a big nap. We're not talking catnaps, dozing off in front of the TV, catching a little shut-eye. I go down hard, and I'm out for 2-3 hours. Sometimes, I need this rest when it's still in the A.M.; sometimes, my naps will last until it's time to think about dinner. Unlike the way I sleep at night, in a daytime nap my body completely relaxes, my mind goes dream-free. The pups settle onto either side of me, creating a warm and cuddly human sandwich. Inevitably, I wake without knowing what time it is, what day it is. Will complains that I'm cranky in this post-nap state, and that's unfortunately absolutely true. If I knew how to not be cranky, I would do it. But I can't be reasoned with in the waking-up moments. It's like shaking cobwebs from my mind, and it takes a good minute, sometimes an hour, to clear them away. I tell this to a friend, who notes that I have always liked naps. This is true; naps are high on my list of values. But also, she reminds me, you've had a hell of a year. What if your body just needs rest? I think back: there was the skin cancer (a sous vide-like chunk carved out of my back last fall), pneumonia in November, my broken foot in December, what was either norovirus or some really tragic food poisoning around Christmas, my dad's declining health and passing in March, and then, just when I was catching my breath, the news that I have/had breast cancer. (This is to say nothing of the sprinkling of other losses, like trust and friendships, professional disappointments, things too heavy to mention here.) I wonder: Have I been heading in this direction all along, steamrolling myself into sickness, until my body simply refused to go any further? This, I know, is not how cancer works, but in my post-cancer state, I can easily succumb to this form of magical thinking. I have been going and going and going, a middle-aged Energizer bunny with an irregular drum beat, marching steadily between obligations, assuring myself that at some distant point in the future, not today, but soon enough, I will be able to slow down. And when I didn't slow down on my own, cancer made the decision for me -- pulled the plug (or removed the batteries, to better fit the analogy), and here I am. ** Cancer changes you, my therapist A says. This experience will change you. She knows; she spends her days in conversations about cancer, mental health, body dysmorphia, and all the attendant worries and questions. We mostly talk about where I am right now, what I'm feeling today, what things she can help me with, what resources I might need. But I can't turn off the "what comes next" switch that's flashing in the background of my mind, a pulsing light that wants me to answer the big questions. There's time for all of that, A says. You don't need any of those answers today. And yet, I wonder: How will this experience change me? Who will I be when I've caught up on sleep and have clarity? What will I do with myself? What comes next? But first, a nap.  It was a sweet space to recover. The pain scale (which of course makes me think of the excellent essay by Eula Biss), measures the intensity of pain a person is experiencing in a more or less standardized way that can be communicated to their doctor. A 0 is no pain; a 10 is extreme pain. In the middle is moderate pain, which I have always interpreted as "you can live with it". Note: this is not meant as medical advice.
In a video appointment with my therapist A, she asks about my pain level. "I don't know if it's pain, per se," I tell her. "I mean, I'm uncomfortable all the time. Things are itchy and tingly, and sometimes it feels like my chest is being strangled." I can see her jotting this down, and also the surprise on her face, the slightly raised eyebrows. "So it hasn't decreased as much as we were hoping," she says. "But you're no longer taking pain medication?" I could only handle the oxy for three days; it made me so loopy I couldn't be trusted to walk down the hallway without falling. I took the 800mg ibuprofen for ten days, then cut down to 400 mg until the bottle was empty. At that point it occurred to me that I wasn't in pain, just discomfort, which is maybe splitting hairs. "It's hard to explain," I say, trying to explain anyway. ** A bit of Paula lore: In my late teens and early twenties, I had a condition that caused tissue to grow around a nerve ending, effectively pinching or pressuring the nerve, leaving me in a near-constant state of 6-7 pain that sometimes flared up to an 8-9. I became a frequent flyer to emergency rooms and urgent cares, where I was triaged as a low-level priority (I mean, understandable in the face of life-threatening emergencies) and I often slumped in a chair, sobbing, until someone would see me. For a year or so, until I was able to convince a doctor that I needed surgery, I took an unbelievable amount of painkillers. After the surgery, my life immediately improved. I felt, for the first time in years, normal. I wasn't tied to the bottles of naproxen sodium that I had stashed in my backpack and glove box. And I noticed something else: I had developed such a high pain tolerance that I rarely felt any pain at all. This was sometimes dangerous--I was nauseated when my gall bladder had issues, but never felt pain. (Finally my doctor ordered it out, since the ultrasounds kept revealing I was in a bad state.) Afterward, I didn't take more than an Advil. It was the same with my knee, years later. I never described it as pain, just weakness, like a necessary piece of support was missing. "Boy, you bounce back fast," people have said, but I suspect that's because my body doesn't know what's going on. So what's happening post-mastectomy is puzzling to me. I was sure I wouldn't even need painkillers, that the advice to stay ahead of the pain (take the meds on a schedule so I wouldn't suddenly be writhing) was well-meaning but didn't necessarily apply to me. Now, weeks out, things just feel... weird. "Everything hurts," I explain, trying to ward off a hug from a well-meaning friend, arms crossed over my chest. We bump shoulders, the closest I come to human contact these days. ** I try to explain it to A: it's like tingling, sometimes numbness. Things are itchy in one spot, and then a few minutes later, the itch has migrated a few inches in another direction. It's more discomfort than pain most of the time, but then I'll shift in my sleep and wake up with a gasp: why did that hurt? Why does it still hurt? It's been three weeks since my surgery, and about nine days since my drains were pulled and the stitches removed from my nipple graft. I have been released to wear a "soft but supportive" bra, but sometimes it feels like absolute agony to have even a strip of fabric over my chest. I'm constantly pulling on straps, adjusting bands, itching here or there. A says she's just going to message the nurse navigator on my behalf, and half an hour later, C calls me. ** What you're experiencing, C says, is most likely phantom pain. I'm surprised. Of course I've heard of it. I'd associated it with lost limbs -- soldiers coming home from war, that kind of thing. It's a miscommunication between the brain and severed nerves: mixed signals, messages not received. "That's phantom limb pain," C clarifies. "What we're talking about is phantom breast syndrome." I have a new term to google. ** Phantom breast syndrome essentially works the same way as phantom limb pain: nerves have been damaged, and the brain has not yet processed the changes. This makes perfect sense to me, all of a sudden. My brain has been slow to process all of this. Yesterday, I realized it was November, and I had missed almost all of October. I couldn't tell you a single thing that happened in September except my diagnosis. Still, when I wake up each morning, there's a moment when I've forgotten, and until I begin to move and feel the first sting of pain in my chest, I'm still the old me. My brain has not yet processed the changes. ** The symptoms of phantom breast pain, according to breastcancer.org, are: pain and discomfort, itching, pins and needles sensation, tingling, pressure, burning and throbbing. Yes, yes, yes, yes yes yes and yes. Phantom pain is not just "in my head," C assures me. It's a real thing. "Your body went through a major trauma. You may want to move on, but your body is not ready." ** And so. Here I am, waiting for my brain and my body to talk to each other. Time is not a real thing.
On September 9, I was diagnosed with invasive ductal cell carcinoma. On October 10, I had it removed. ** Some life updates: 1. The surgical drains came out (a solid 8/10 on the pain scale), the tape holding them in place was removed, the threads tethering my nipple covers were carefully snipped (I couldn't watch), and I was cleared for *very* light activity. 2. I went to the grocery store for a few things, and then had to recover with a 2.5 hour nap. 3. I took my last antibiotic from the two-week course. 4. I showered on my own, standing up, only a few strategic areas of my body taped, listening to an audio book. A big improvement from a week ago, when I stood still in the kitchen while Will circled my chest with saran wrap.) 5. I walked the dogs up and down the block, since Will is back at work. This is not technically on my approved list of things to do, but I moved carefully, using what my Nurse Practitioner C calls my "T-rex" arms: no reaching, lifting, pulling, pushing, yanking. Fortunately, the dogs complied. ** I am at the stage of recovery where I'm bewildered by all of it. Talking to my therapist A on Friday, I said I felt that I had "cancer-lite." What do you mean? she asked. I thought of all the women who have reached out to me in the last few weeks, and the women in my own family from recent and long-gone eras. I have heard their stories: invasive, non-invasive, HER2 positive, triple negative, stage 3, stage 4, lumpectomies that later became mastectomies, months of chemo, radiation burns, eventual (or still waiting for) reconstruction, remission, recovery, relapse. It is impossible to think of them without awe. And also, not a small measure of guilt. Didn't I get dealt an easier hand to work with? By choosing a mastectomy, I avoided radiation. Because my Oncotype score is low, I dodged chemotherapy. For reasons I don't fully understand but deeply appreciate, Dr A was able to put in my implants as part of my surgery. (He had warned me in advance that this was extremely unlikely; in only about 10% of patients did this work out.) I am that 10%. I woke with implants and no need for a second surgery down the road. While C, the nurse practitioner, snipped the threads of my nipple covers (and I looked carefully at a poster on the wall), I asked her tentatively how I should refer to myself. Am I in remission? recovery? "Girl," she said with a decisive snip, "you are cancer-free." "You see what I mean?" I said to my therapist A the next day. "Cancer-lite." A didn't think this was a particularly helpful way to look at it. Cancer has huge ranges, depends on dozens of factors, is experienced differently by everyone it touches. She counsels women in all stages, and they have nothing but support for each other. "You had a diagnosis and major surgery," she said slowly, letting each word land. "You're going to be doing years of hormone therapy, and right now we can't say how that will affect you. This has forever changed your life." But do you see what I mean, about the guilt? It's completely non-helpful, but it's there, alongside a healthy dose of relief. Typing this, I'm bawling. I'm grateful, I'm not deserving, I'm a big whiner to have such a small slice of this experience and still be reduced to tears whenever I have to talk about it. Mine is one story out of many. It's not the most dramatic. It's not even particularly interesting, except to me. ** On Saturday, we gathered for my mom's 80th birthday, seven months after my dad passed. We'd initially booked a condo near Monterey for the weekend for the five of us girls, plans my sisters graciously rearranged after my surgery date was set. Instead, it was all of us Californians plus B from Washington, a noisy group of twelve that took over the wing of a lovely restaurant in Oakdale. I wore a real bra and was self-conscious about it, but my sisters insisted everything looked "normal." (It doesn't feel normal -- but more on that another time, maybe.) The four sisters huddled to one side and shared all our body stories, because this is what women in perimenopause do. We laughed and commiserated. The teenagers played on their phones. The men chatted, the server moved around us politely, gathering plates and utensils. My mom kept saying how happy she was that we were all together, that this was all she could have asked for. Me, too. I'm at the stage of recovery where I am, frankly, cranky as hell.
I would like to lift my arms over my head. I would like to shampoo my own hair. I want to drive my car and not be driven somewhere. The porch is a mess, and I would like to sweep it. I want to do something as benign as sit in a coffee shop and drink a latte and people watch. I am itching to shelve a million books at the store. I would like to not sit on the couch for more than half the day. I would like to sleep in my own bed again, on my side, with my husband and our snuggly, sometimes annoying pups. I would like to not watch so much TV. I would like to not have to wear baggy shirts and sweaters that somewhat cover my drains. I would like to move my body without measuring each reach and stretch. I want these drains out. I want this binding off. I warned you: cranky as hell. ** Thank goodness for friends who have come over, bearing flowers, soup, sandwiches, popcorn and candy for movie-watching, funny cards, puzzle books, novels I should read... They have sat on my couch while my ill-behaved dogs climbed all over them and barked at every passing car (we're all a little cranky around here, tbh). They have brought news of the outside world (it's a bit of a mess), their careful questions and best wishes. They have kept us sane. I'm so grateful. ** Speaking of grateful... The hospital sends me an envelope that contains only a folded piece of paper. It's too small for the inevitable bill (which is going to give me a heart attack, I'm sure), but I open it carefully, puzzling over the contents. It reads: "Dear Patient, During your recent surgery or procedure, you received a tissue graft from MTF Biologics. This graft was made from donated human tissue. As a tissue transplant recipient, we are inviting you to write a letter of thanks to your donor or donor's family. Many donors or donor families may never learn about the impact of their gift and appreciate receiving a card or letter..." It goes on. Um, what? I haven't spoken to my surgeon other than to exchange messages about my healing, so I haven't heard anything about this. I add this question to the list for when I see her on Thursday. What tissue? What part of me used to belong to someone else? I'm not mad about it, mind you. I have the designation on my driver's license that I would be a donor myself, if that's how things shake out. I admire the heck out of donors, like people who give up a kidney to a complete stranger. I'm only surprised, because I didn't know this was on the (operating) table. I've been sitting with this information for a few days now, thinking it through, the path that my new body is on, my alien body, that right now feels very strange to me -- new parts, borrowed parts, old parts. Will the real Paula please stand up? (Slowly, carefully, and without using your arms.) ** I'm burying the lede, as Will would say. The good news is, that after the meeting with the oncologist, I've learned that I don't need chemotherapy. This is what my surgeon, Dr. N predicted, based on a number of factors that go into something called an Oncotype score that measures the risk of cancer recurrence. Because my cancer was caught early, because it was small, because I don't have the gene mutation, because of the type of cancer it is and isn't, because it hadn't spread to the lymph nodes, because of the treatment I chose and because I'm (relatively) young, I have a low Oncotype score, and there would be little benefit to chemotherapy. Instead I'll start hormone therapy in November, although the exact course of treatment is still a bit unclear. I'm relieved, though still somewhat dubious. Every person I've told has replied with, "You can keep your hair!" and I'll admit that's wonderful. Not that my hair is so great, but it's mine. I battle it every day with conditioner and leave-in conditioner and a wide-toothed comb, but I still want that battle, for as long as I can fight it. Next up: say your prayers and cross your fingers (I'm doing both) that these drains can come out on Thursday. TL;DR: a cancer timeline.
** It goes like this: I schedule my regular mammogram for the beginning of August. Per my insurance, I have to wait 365 days from my last mammogram to reschedule. I complete the annual squishing ritual, and then, when Will and I are in San Diego for our 25th anniversary, I get the notification on my health app that the mammogram uncovered an "abnormality" and I would need to schedule a diagnostic mammogram. I sit with this news under a pleasant breeze. It is probably nothing. I have had mammogram recalls before, because I am part of the population with "dense breast tissue" which has nothing to do with size, but everything to do with how hard it is to read the imaging, due to fibrous tissue that appears white on the screen. I tell my sister in law, who has been dealing with this too, and she comes with me to the mammogram. If the diagnostic confirms what they saw in the original mammogram, I will get an ultrasound on the spot. H and I commiserate and gossip in the waiting room, and then I go back first for the diagnostic, and then, half an hour later, for an ultrasound. I shiver under an A/C vent in my thin gown until the technician comes back to tell me that something appeared on the imaging, and I'll need to schedule a biopsy. H is with me in the scheduling room, and chides me when I turn down the first available appointment, which is coincidentally the first day of my fall classes. What's more important, Paula? But it doesn't seem real to me -- it could still be nothing -- and it's a pain to communicate with students before class begins. I can imagine the flood of emails from anyone who didn't read the online announcement, the confusion of some lost first years wandering the halls, and so I take the second available date, a Monday. Will comes with me, because this is getting serious, now. The technicians joke with me while my right breast is balanced on a clear plate, presented like a delicacy. The doctor injects a numbing agent and then performs the biopsy, inserting a titanium clip. If the biopsy is negative, it will be a marker for my future mammograms: nothing to see here. If it's positive, it will be a roadmap for where the surgeon should cut. Afterwards, one of the technicians has to put pressure on my breast for about twenty minutes; it's intimate and awkward and we make small talk about movies, books, nothing at all while she presses against my breast and I brace against the pain. Either way, positive or negative, I'll receive the results in person, so an appointment is scheduled. It could still be nothing, even though it's getting harder to convince myself of this possibility. On September 9, K comes with me to the hear the results. She's a nurse, trained in understanding both the body and how to deliver/receive bad news. I learn that I have invasive ductal carcinoma (a cancer originating in the milk ducts and spreading to the surrounding tissue) in my right breast, and I learn its type: ER+ (estrogen receptor positive) and PR+ (progesterone receptor positive). This means nothing to me yet, but the nurse practitioner assures me it's a very treatable cancer. Early and treatable, she stresses. K and I hold onto each other and cry. My mind immediately goes into an unhelpful spiral, and I can't even think of questions to ask, so K takes over. Future appointments are scheduled. I have the feeling of something being set in motion, of being swept into a larger arena full of spectators, all of them in blue scrubs or white coats. We had planned to go out to lunch afterwards, either to celebrate me not having cancer or to make plans for how I will fight it, and so we end up at Village Baking Co and order soup and sandwiches and tea and I try to chew and swallow and make a list of people to notify. Will is the first. Even though I don't want to tell him and have him drive the hour home with this information, I call him. I repeat exactly what was said to me, trying to keep any sound of tears out of my voice. On September 11, we meet with my surgeon, Dr N. I have told only a couple of people at this point, so it feels like a secret assignation, albeit in room with comfortable chairs and state-of-the-art imaging screens. She shows me my cancer on the screen, which looks like a little spot of nothing in a sea of graininess. I ask questions. She draws me a picture on the back of a handout that I will later stuff into my already overflowing cancer binder. Will asks more questions. She recommends a lumpectomy, stressing the early, small nature of this thing growing inside me, but she also orders an MRI to check on a second spot not yet biopsied. Whichever option I choose, lumpectomy or mastectomy, my surgery is scheduled for October 10. A clock starts ticking. At 8:30 am on September 16, I lock my clothes in the provided locker and follow the radiologist down the hallway. I've had MRIs before, but I would count this one among the worst experiences of my life. I lay upside down, my breasts falling into two strategically placed holes, my face pressed into what can best be described as a hockey mask. It's horrifyingly loud and the 40 minutes are endless. When the tech says, "I'm going to inject the contrast now; you're halfway there," I almost scream. But this feeling is replaced by a sudden, overwhelming urge to vomit -- it's the taste of the contrast in the back of my throat. "Don't move," she reminds me, but I have to keep swallowing and swallowing, and tears are streaking down my face, falling off my nose. After two minutes or so, the nausea passes. I have never felt so alone. The MRI reveals a second spot of cancer, which changes the tentative game plan. On September 23, I meet with Dr A, a plastic surgeon, who examines my breasts, talks about size, shows me the tissue expanders (often step 1 in reconstructive surgery and highly uncomfortable). I can still choose the lumpectomy, but it will mean removing a significant amount of breast tissue, and some plastic surgery will need to be performed on the left side for symmetry. I'm still wavering between options, but more and more, it seems like a mastectomy is the way to go. And if I'm doing one... I should probably just do two. I begin "prehab" with S. on Tuesday and Thursday mornings at 7:30, before my other appointments. And the other appointments are constant: there's bloodwork, genetic testing, a follow-up with Dr N, a follow-up with Dr S, my regular skin cancer appointment, meetings with my nurse navigator C. But on Tuesdays and Thursdays, I have brief moments of feeling in my body, not an outside observer, as I strengthen my chest and arm muscles and learn the post-surgery exercises that will allow me to regain mobility. On Sept. 24, I meet with a therapist (A) who specializes in oncology. It's just in time; I haven't been sleeping. I'm juggling the bookstore and my teaching job and a million appointments and looming decisions, and I'm not doing any of it well. I don't know how to tell people outside of my inner circle that I have cancer. I don't know how much time to ask for on my academic leave. I don't know how I'm going to not be able to do basic things for weeks, and so Will needs to take family leave from his job, too. It's too much, I tell her. A lets me talk, offers reassurances that everything I'm saying and feeling is normal. We agree to meet again weekly. On October 2, I meet with a geneticist, who takes detailed notes of my family history, and draws a chart as we talk. My testing has revealed I don't have the BRCA gene mutation associated with breast cancer, but the geneticist sees a number of "red flags" -- breast cancer on both sides of my family, including two family members who have died from it. My cousin's cancer at a young age. My own cancer, diagnosed before age 50, is considered "rare." She tells me to notify my siblings, and have them notify their children, that my cancer qualifies them for free genetic counseling. It's sobering, to say the least, but I'm also fascinated by it. I meet with Dr A again. I continue pre-hab. I see my therapist A. More blood draws. Phone calls where I have to answer a million pre-op questions. I finish grading final drafts for my students, my last contact with them for the semester. H comes over to help me deep clean the kitchen. I haul the last heavy boxes of book returns to UPS. Will and I take care of as much business as we can. I hold my regular book club meeting. I participate in a panel discussion about banned books. We take my mom out for Thai food. The night before, I don't sleep for a minute. October 10: bilateral mastectomy. That first night back from the hospital, I'm draining a lot of fluid. It's decided--between the Ks and Will, since I'm basically out of it--that the drains should be emptied before I go to sleep for the night. I sit upright on the daybed that has become my hospital bed, wearing only the binding top and my high-waisted sweats, while Krista takes charge: cleaning the lines, releasing the valves. The blood is dark red and poured into tiny plastic cups, like the kind that come with a NyQuil bottle. Afterwards, they bring me some ginger ale, mini Saltine wafers and an oxycodone. Everyone watches solemnly while I chew and swallow.
It's like communion, with the wafers and the cups, and I start crying because it does feel holy, to be so loved. ** On Tuesday, I get the pathology report from Dr. N. Ninety percent of it is in medicalese, a language I don't speak fluently, and so I skim anxiously, looking for words I know, like I'm picking out proteins from a Swiss menu. (The one time I did this I ended up ordering horse. Horse!) There is a reassurance to medical terminology, to numbers and measurements, like "Both foci located at 12:00 and are 1 cm apart from each other" and "Invasive ductal carcinoma is 14 mm to the inferior margin (A 11)." Both foci is referring to the two spots of cancer, one that only showed up on my initial mammogram and then had to be confirmed by an MRI when further mammograms, ultrasounds and a biopsy couldn't find it. Sneaky little bugger. I know the word "margins" because everyone has told me that cancer is all about "clear margins" -- clear meaning that they got it all, and only healthy, non-cancerous tissue is left behind. My phone pings with a message from Dr. N: a short summary of the long report I'm reading without much success. It's good news: there's no cancer in my lymph nodes. This has been the shadow hanging over me since the ultrasound, the worrisome "inflamed" node that we have referred to deferentially, cautiously, the uninvited guest who might still show anyway. And now the shadow has disappeared. ** I text the good news to my family and a few friends, and let it spread from there. H brings me dinner, and C stops by to check a worrisome thing happening with my left JP drain, and K brings champagne, and the four of us end up laughing and telling stories until past my post-surgery bedtime about our all too human bodies. So I'm not sure why I can't sleep that night. It should be, and it is, an absolute relief. I won't know until next week when I meet my oncologist if I'll be headed into chemo, but the news is good. Still, my mind is somehow doubting, my worried mind that is my best friend and worst enemy, that reminds me to get my regular mammogram and then second-guesses every piece of news, looking for the shadow hiding just around the corner. Today is shower day.
It. Has. To. Be. ** We make the plan over coffee. It's raining outside, but the dogs are anxious for their walk anyway. First, we'll gather the supplies: towels, the bandages that will cover my incisions, clean clothes, the shower chair that's been parked in the hallway waiting for the last two weeks. It will be Will's job to reach up to adjust the showerhead to the handheld setting and maneuver the chair over the rim of the tub. I'll somehow fashion a tie for my drains and maneuver myself inside. We'll cover my nipple grafts (sorry, you may not have seen that coming) and then the incisions for the drains, so nothing gets wet. And then, we'll be ready to go. ** The worst part, I thought, would be the anesthesia, based on my short but unsavory history of not handling anesthesia well. Now that I'm mostly on the other side of it -- still falling into a sudden nap when I sit on the couch, but mostly alert -- the worst part is the drains. I've been fitted with two Jackson-Pratt (JP) drains, one on either side of my chest, and if you don't know what those are, you are living in the blissfully ignorant world I was in just a few days ago. The drains, essentially, are what allow a bilateral mastectomy to be a same-day, recover-at-home surgery. (This fact in itself is insane.) The base is a suction cup, and the fluids that are silently, gently, suctioned toward the collection ball encompass the ick that needs to come out of a person after surgery: blood, lymphatic fluids, the little yellow beads on top that look like fat skimmed off ground beef. The drains need to be handled carefully, to keep them clean, draining, and ideally not pulling on their incisions. We received a crash course in drain emptying in the post-op room, from a nurse who was clearly ready to head home. Will took detailed notes. K and K paid attention and asked questions, and I tried to stay awake. The cleaning happens twice a day (or more, if there's more fluid), and each time the collection balls are carefully emptied into little plastic cups, the fluid measured, recorded and flushed. There's a complicated system of opening and closing valves, washing things down with an alcohol wipe, recording numbers on a chart. In four days, my fluids have gone from a dark red to a lighter red to a dark orange. Ideally, they will drain less and less, and eventually, they can be removed. ** So, the drains are a godsend, but also a pain in the ass. The tubes dangle, can only be carefully clamped or clipped to my binding vest, and get in the way of all movements. Yesterday, we had a post-op appointment with a nurse practitioner, who inspected the drains, the grafts, the general condition of my incisions. She was full of jokes and reassurances, and somehow managed to make my body feel less like something from Frankenstein's laboratory and more like a healing, normal body. I won't forget that. ** The smell, more than anything, woke me up this morning. My smell, emanating from my underarm when I carefully adjusted the mountain of pillows boxing me in. It's a sour smell, a five day old smell, but it's an alive smell, a healing smell. Now it's time for that shower. The anesthesia hasn't fully worn off yet.
And the meds make me so loopy, I can't write a sentence without losing the thread. But I'm trying to get it down so I can remember. This is Friday: ** Arriving at the hospital in the dark, being ushered through security. Waiting for a wheelchair ride to nuclear medicine -- but why? I don't need a wheelchair yet. Dye injected into my right underarm, so the surgeon can detect what's going on with my lymph nodes. The PET scan, a million times better than an MRI. So quiet. So gentle. Pre-op, a nurse named Nathan, some joking, comments about my glasses. Trying to start an IV on my left hand, giving up and starting on my right. I've never had that issue before. Even my veins are hiding. Dr. N comes in and draws with a sharpie around my breast, and writes the number 2 near my right lymph nodes. Dr. A comes in with his own Sharpie. At this point I'm used to people looking, touching, prodding. The anesthesiologist comes in. He's cute. Dr. S. I've told them about my issues with medication. Once I woke up during surgery and tried to pull out my trach tube. Another time, at the dentist, I had temporary paralysis. Dr. S tells me about a pain bloc, and I say yes, let's do it. Will is there, fielding texts. A nurse named Bianca writes my name on the white board. She writes: surgery 3 hours. Recovery 1-2 hours. Post-up 1-2 hours. Will says it will be longer, that I have a hard time waking up. Explains that I take anesthesia hard. Then it's go time. The gurney being pushed, Will kissing me goodbye as the doors part, a long hallway, three or four people in green scrubs, faces masked, waving me hello. Being transferred from the gurney to the skinny operating bed. Put your left elbow here. Put your right elbow here. The anesthesiologist is back. The ceiling is white tiles. Everyone is doing something, strapping me to something, measuring something. "I'll give you a little bit to calm you down," Dr. S. says, and even though I'm calm, I know this is it. The IV hooked up, something cold floods in, and I'm out. ** When I wake up, my mouth is dry and my eyelids are so heavy. I'm back where I was before the surgery, on my gurney, hooked to a dozen things. A blood pressure cuff tightens on my left arm and releases. I'm alive. They tell me I've been there for a long time, just sleeping. I ask for Will, and when I wake up again, he's there. More hours pass. I can't keep my eyes open, can't hang onto a thread of conversation. My mom is there. Kirsten and Krista are there. It's a different shift of nurses, and this new one isn't as pleasant. I eat ice chips. The nurse listens to my stomach: nothing. Will learns how to clean my drains, which are tubes dangling from my breasts. Or, what used to be my breasts. My new breasts, I guess, because Dr. A was able to put in the implants at the same time, which he'd said was unlikely. But everything is bound so tight, I feel flat as a board. A wheelchair to the bathroom. All my muscles feel weird. My legs can't hold me on their own. A wheelchair to the parking garage. Being helped into the passenger seat. Pillows over my chest to protect me from the seatbelt. I must fall asleep because we're home one minute later. It takes three people to help me into the house. Those two steps up are huge, how will we ever possibly do them? But then I'm in my recovery room, on the daybed, and it's so good to be there, such a relief. I'm years older than I was this morning. Krista brings me bone broth and toast and a ginger ale oli pop. Kirsten makes me comfortable. Will manages the dogs, who have to be kept away. I sleep. I wake up, try to read a page, fall asleep. I wake up, try to eat something, fall asleep. I wake up, need the bathroom, fall asleep. I wake up, see that someone has delivered flowers, fall asleep. I wake up. I sleep. How to prep for a bilateral mastectomy:
First, clean all the things. The counters, the fridge, the tub. Wash all the sheets. Throw out the expired food that somehow accumulates in the pantry. Break down the boxes from all the crap you bought when you learned you had cancer. Dust. Vacuum. Fold the clothes that have been draped over the door to your wardrobe for weeks. Rage clean. Pity clean. - Second, see your friends. Arrange for late-night dinners, sneak away from the store for a quick bite, sit in the corner by the cookbooks together and laugh and cry and rage. Let them buy dinner for you. Let them shower you with small, thoughtful gifts that post-surgery you will need, but which pre-surgery you can't fathom using. Accept the help from your sister-in-law and deep clean your kitchen together. Answer their texts. Take their phone calls. Feel a growing lump in your throat when you think about this family you have, this wild extended family, all of them so precious, all of them so good. - Third, get a reading list together. You own literally hundreds of books you haven't read, and now might be/is the time. Somewhere on your shelves is the new Murakami novel. There's The Briar Club, a book you bought for your mother but figured you might as well read first before handing it over. Go as a River, the description which intrigued you so much you bought the book twice, not realizing it until you shelved the second copy. And then Whiskey Tender, which you bought after being so moved by the author's reading and then promptly forgot about, because when is there ever time? Also, there is rereading. Your weird girl favorites, like Otessa Moshfegh. A Mary Oliver book of poems. Stephen King. Books from your childhood. Does Charlotte's Web still hold up? And then the things you started but never finished, because life. You have started This is How You Lose the Time War a half-dozen times. You were so gutted by Before the Coffee Gets Cold that you simply couldn't finish it, although you've hand-sold it a dozen times. Short story collections with bookmarks sticking out of them, because it really doesn't make sense to read a short story collection all in one go, does it? Biographies, memoirs, things that intrigued you in the moment, and maybe after all they hold the answers you are looking for, about how to live a good life. Place the stack by the bed, next to the reading light and the phone charger. Think how hopeful it looks. Remind yourself that future you, two or three days from now you, will be grateful for these words. - Fourth, prepare your body. Look at yourself in the mirror, really look. You've loved and hated this body, but it has always been with you, always brought you where you needed to go. It has been a good body. You joked with your husband about a goodbye party for your breasts, maybe over Zoom and of course fully clothed, where everyone could say something nice about them. Raise a glass, toast to send them on their way. Instead, alone, you sob and sob. The instructions from the surgical care team, relayed by a voice on the other end of the phone while you dash notes into your planner, are very specific. Stop taking all oral medications, yes, even your multi-vitamin. Absolutely no Advil. After midnight, no food. After three am, no water. Remove your fingernail polish (this too? the indignity of an unpolished nail). Wash with antibacterial soap on a clean washcloth. Dress in clean pajamas. Sleep on clean sheets. Arrive as sterile as you can possibly be. - Fifth, pray like hell. |
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November 2025
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