Rhena Writes

Tag: Cancer

  • Is a port just a port?

    I could feel something happening on my lower abdomen, close to my pelvis. I saw the blue paper a few inches from my face and lights and blurry shapes through the clearish plastic to my right. Nothing else. I heard the voices of the nurses and techs talking to each other and some music. I’m fine I told myself. This is just paper and plastic. I turned my head upward slightly to look at the opening to the paper and plastic just above where I was lying on the operating table. What if I push this whole thing off of me? I thought. Would I be able to? Can I even move my body? There is enough air, I reminded myself. Soon, I’ll have a sedative in my IV and this will all be fine, I thought. But what if I don’t make it that long? What if they’ve forgotten about me? Calming words started to escape from my brain, fleeing alongside logic. I heard a slightly louder voice from the other side of the room.

    “Are you just getting nervous over there?” Joy, the nurse, asked. Is she talking to me? How did she know? Words were still floating somewhere outside of my head and body, flitting about out there with its buddy logic, having abandoned feeling to be on her own inside my body.

    “Are you feeling nervous there?” Joy asked again. Oh! Maybe she is watching a screen. Maybe the screen tells her my heart rate and my respiration too. Maybe Joy is an empath. Maybe both and all of this is true.

    “I’m just feeling a little claustrophobic,” I croak from the operating table, trying to gauge how loud I needed to be in order to be heard through the paper and plastic sterile shield. Hands were quickly enlarging the opening, rolling the paper from above my head to eye level. My hot breath escaped and cooler air touched my face.

    “Something is on my body. I don’t know what it is,” I tried to explain the feeling of lying on a table and not knowing what’s being done to your body. But words were still on the lamb.

    A voice: “We use your body like it’s a table.” I shouldn’t be comforted by this, but somehow I was. It was the straightforwardness of it. This is your body. We are using it. For this purpose. And somehow it was comforting even though no one could see my face nor any of my skin even really (wrapped, as it is, in warmed blankets) save for the six or so square inches of my left chest, below my collar bone where the port has been situated ever since it was installed in a similar operating room at a different hospital eight or so months ago.

    One of the nurses leaned down so that he was eye level to me. “If you need something like that, you can tell us,” and he offered to take my glasses. I was grateful that he phrased his help and care in this way. He didn’t question why I didn’t say something, just offered.

    I thought that maybe I could hear the doctor who I met in the prep area an hour or so before enter the room. I could feel the IV in my left arm being fussed and fiddled with. It wasn’t painful and I knew that Joy was likely getting ready to push the sedative into my body and I could begin to anticipate the not caring. And then, perhaps, the greatest comfort, more so than having the drape pulled back so I could breathe, is when Joy said in her very serious voice, “nobody touches this patient until she is sedated.”

    Joy gets it.

    Another beat passed and I felt the cool liquid enter my vein. Soon, a bitter taste filled the back of my throat.

    “I can taste it,” I announced. Apparently, my words found and opening and returned back into my brain. So did logic.

    “That’s the sign of a good IV,” Joy assured me. “This next one is going to burn a little.” But already I didn’t care. Or maybe I almost wanted the burn, knowing that what would follow would be complete not caring. I barely even noticed when the doctor injected the numbing agent. Still, Joy assured me, “this is the worst part.”

    I thought I heard someone at some point say something like, “I’m sure the chemotherapy is the worst part.” And then clarified, “that’s some nasty stuff they give them.” Or something like that. But maybe I dreamt that part. In a way, I feel proud that I endured something that even a medical professional (and one who is currently cutting into my skin no less) acknowledges as awful.

    I could feel slight tugging at moments. And then someone held the port where I could see it. It was a purple triangular hunk of titanium bobbing a bit at the end of the thin, white plastic tube and covered in droplets of blood. My blood.

    “See?” Joy said. “It’s out.”

    “Can I take it to show my kids?” I asked her, still sedated.

    “No, my dear,” she responded. “This is biohazard.”

    “Yeah. I’ll just draw it for them,” I answer.

    “Just draw a line with a triangle at the end.”

    I thought I could hear bits of conversation. The surgeon and the nurse discussed the scar from when the port was installed. “If she scars, she scars,” the doctor said. I could feel the stitches going in. The right side of my chest, where my breast was removed a few months back, is entirely numb. No nerves there anymore. And I’m finally used to the odd way it feels to touch the skin and have no sensation.

    And like that, the surgeon was done and gone. Ten minutes they told me. Someone finished bandaging me up and then they took the “after” x-ray showing nothing to pair with the “before” x ray of the triangular port in place.

    When the port was first placed, it was uncomfortable and at times even painful. Still, it was better than the alternative of the chemo medicines burning the veins in my arms as they entered my body through an IV. And the discomfort didn’t last forever. At times, I even forgot I had a port, although I never really wanted to touch it, so disconcerting was the feeling of that bump of metal under my skin. I say that at times I would forget it was there, but those moments were brief. I wondered how much my body and mind had adapted to having this in me without me even realizing. After my chemotherapy treatments were complete, I still had to have the port flushed at least every six weeks. Tracking this, scheduling the flushes, getting to the office, all of that took a large amount of mental space. I wondered too, if my body was expending energy to accommodate my port in ways that I wasn’t aware. Would I feel different after having it out?

    It’s been two days now and I don’t know how different I feel. Is my energy flowing more smoothly on that side of my body? Maybe. I’ll give it some time. I’m still healing.

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  • Untethering from Social Media

    I deleted Facebook years ago and Twitter a few after that. A few weeks ago, I the last of my social media apps: the mostly image-based Instagram and their partner text-based Threads. Social media, the whole of the internet, is, I believe, mostly a gift to the world. But my brain, my whole person was formed before the internet, much less social media, existed. In other words, I’m not equipped for handling it. My mind simply doesn’t move fast enough to keep up and, in attempting to, I was doing damage. It was as if I was lining up on the track next to Florence Griffith Joyner each and every day and expecting myself to keep up. My hamstrings – nay my whole body would have taken a beating if I ever even dreams of going up against Flo Jo but, more importantly, my self-esteem would have been obliterated. And it was. 

    I wasn’t too keen on the idea of deleting social media. The other day, my six-year-old son was staring out of the car window into the massive sky above. “Mom,” he said, “I don’t like to think about the universe.” I told him I get that. He confirmed that it’s the vastness that makes him feel small. It’s dark and lonely out there in the universe. I was so used to having and being on social media that I thought that deleting it would untether me from the earth and send me out there into the universe, alone, cold, and in the dark. 

    When I first came across posts on social media by patients in cancer treatment, it made me feel less alone.  Somehow, in spite of the fact that I wasn’t really looking for it, I’d come across people posting about their experiences with cancer. There was even a woman preparing for her mastectomy at around the same time that I was. I wasn’t alone. 

    Perhaps you can see where this is going. As soon as I clicked on a couple of cancer posts, the algorithm latched on. Soon, a good portion of my feed was cancer. And I couldn’t help myself but read and click. I’d try to close the app and just the c-word alone would catch my eye. I felt an obligation to consume it all. 

    One of the prayers that I had when I was going through treatment was this: that my suffering makes someone else’s a little less. There are certain aspects of Catholicism that are engrained in me and that’s one of them: offer it up. Offer up your suffering so that it has meaning if not for you, then at least for someone else. For the most part, I was thinking about my daughters in those moments, praying that somehow me going through all of these trials would save them from a similar fate. In the early days of my treatment, the genocide in Palestine was dire and so my prayers were also for mothers there. In my moments of pain rooted in my own body attacking my breasts, all mothers and children and their bonds and their bodies and suffering all became mixed together. 

    And some of that responsibility and connection carried over to my fellow cancer patients on social media. Somehow, it was my duty to keep reading all of these threads. But reading, engaging them seemed to created more until everything was cancer content. It’s about as much fun as it sounds. 

    This was all in the midst of me, in-person, going with some regularity to a literal cancer center where I would sit in waiting rooms nearly full with other people who possibly also had cancer. And at one appointment, my doctor mentioned (without violating HIPPA) that he’d been recently seeing more of the type of cancer that I have. Later, as I moved into the recurrence prevention phase, he mentioned that he had a patient in a very similar situation to me. At the very least, it’s possible that the doctor was able to use some of what he learned treating me to better care for the other woman. 

    These are connections that I couldn’t get on social media. 

    And so it was that I had it all wrong. When I finally cut the tether, I didn’t float out into the vast, cold universe. Rather, I floated back down to very real, solid, warm earth. 

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  • Knitting and Cancer

    “You can sit and knit while receiving your infusion.” The physician’s assistant who conducted my chemotherapy orientation (yes, just like for freshman newly arrived on campus but with fewer ice breakers) made the whole process seem almost pleasant. And I was, in fact, a knitter, the type of knitter abbreviates “works in progress” to WIPs and, at the time, had no less than three WIPs in various, extremely cute project bags and one yarn stash large enough to require a big bin. But it had been months, maybe even a whole year or so since I had knitted. I had let that particular hobby drift to the wayside. I didn’t really think that cancer treatment would be the time that I was going to pick it up again.

    I love knitting. There’s a certain satisfaction of language fluency in reading and successfully following a pattern. And there’s the return to a WIP again and again, the gradual progress.  I love, of course, to finish a piece and then to give it to someone knowing that I already squeezed maximum enjoyment in the making. Any further happiness on the part of the recipient is mere extravagance. There’s also a human connection: not just between me and the person I’m giving it to, but between me and the shepherds, the spinners, and the dyers too. Perhaps most of all there’s the connection to the pattern maker, who spent countless hours converting the image in their head into yarn and then paper words for me to read and then reverse the process. I don’t personally know any pattern makers. But I know pattern makers. Know what I mean?  What a remarkable thing: to be able to spend weeks inside someone else’s head without every having met them. In science fiction, there’s often some sort of machine (in Star Trek it’s a transporter) that dematerializes an object and then rematerializes them somewhere else. Sometimes knitting is like that. 

    A few weeks after my orientation, I was sitting in my oncologist’s office with my husband for a pre-treament check-in with my doctor and his trusty medical transcriber. My eyes were closed and I was rubbing my fingers across my forehead. All I could think was complete darkness. Just blank. It was probably only seconds but it felt like minutes of just… nothing. Somewhere at the back of my brain, I felt there was a word or maybe a question that I was trying to retrieve. I felt the doctor and my husband waiting. The medical transcribers fingers poised on his keyboard. Finally, the doctor’s voice cut through. 

    “Are you having trouble recalling words?” he asked. 

    “Ya’ think?!?!” I wanted to reply back, but while the snark was there, the language to convey it was gone. 

    “Yeah,” I said. “I think I had a question, but now I can’t think of it.”

    The doctor reassured me that this is normal and that words would come back. What could I do but believe him?

    As it had been explained to me, chemotherapy targets rapidly dividing cells. Ideally, this means that it wipes out cancerous cells. Realistically, hair follicles, the digestive tract, skin and immune cells can all be collateral damage. In my own way of thinking about it, while on chemotherapy, my brain also wasn’t able to form new neurons. This is how I explained the language loss to myself. Or maybe it was the stress of the whole situation. Or that my known information was being overwritten by new cancer patient vocabulary: HER negative, dexamethasone, neuropathy, taxane, and a dozen other that I realize now I never actually learned. Somewhere along the way, I decided to leave it to the doctors and nurses. My own language became much more rudimentary: sleep, pain, eat, poop. At times, I was an infant once again. I could feel people around me internally cheering when they could illicit a smile or laugh from me, just like they do with babies. 

    I never did bring any knitting projects with me to chemotherapy treatments. Knitting is a relaxing pastime but it is also an act of resistance. It is all the things that modern, western society and capitalism looks down upon: feminine, slow, collective, inherited knowledge, sustainable, creative and nourishing. In our culture, it takes time, energy, and focus to maintain those types of activities. So does cancer treatment. The second months of my chemo involved Benedryl, which would usually make me sleepy, and ice packs on my hands to help prevent nerve damage to my extremities. I couldn’t have knit even if I’d had the energy to open up my WIPs and figure out where I’d left off. Besides, in the midst of all of this, it was impossible to prioritize knitting. All those years of learning and doing and making, I shoved it all to the back corner of my brain. Would I ever return to it? It didn’t matter. 

    But no, there’s more to it than this. I just admitted that my language abilities are greatly diminished. And yet here I am, writing and asking you to trust me that this is all going somewhere in spite of my reduced capacities in the very medium in which we are currently communicating. Am I an unreliable narrator then? Are we all? Here. Let’s go back. I trusted the doctors to know the words necessary to eradicate the cancer. Now, I need to trust myself that I have the words to tell this story. It’s not an easy thing, trust. 

    Spoiler alert: I’m knitting again. This fall, I made a charming green hat for my charming nephew. (I’d drawn his name in our family gift giving.) It’s been a pleasant little surprise each time I’ve picked up my knitting these days. It’s so easy! I remember all of it, each of the little steps from balling the yarn to casting on, checking gauge to reading a pattern. And where I’ve forgotten, there’s someone on-line or a book with the necessary information. How did this happen that I can still do all of this? I was recently doing an Old Norwegian cast on and it felt so natural that I wondered whether my ancestors from there weren’t gently working through my bones. 

    The question that I had in the doctor’s office popped into my head one day. I’d wanted to ask if he thought I needed to start on the antibiotics he was prescribing right away or just have them on hand in case of infection. It turns out that he’d already explained that and my husband was there, paying attention where I could not; his brain forming neural connections while my own cells were otherwise occupied. 

    And here we are, at the end of this post, ready to bind off, having sustained each other’s attention against all the odds and distractions. And still here.