In the three-ish weeks between my cancer diagnosis and the start of my chemotherapy, one of my sudden preoccupations was hair. Maybe not so sudden, since for years I’ve enjoyed trying different hairstyles and products, searching for inspiration on Pinterest and reading articles on the Curly Girl Method and microfiber towels. But now I was obsessed with finding new ideas for short hairstyles, head wraps, and chemo scalp care. Nothing about my hair was changing yet, but I decided I needed to change it. I knew it would be falling out soon, at least somewhat, and I couldn’t stomach the thought of my thick shoulder-length falling out in clumps. I’m sure I also wanted to mark the change in my sickness and take control of some part of my body. So I went to a salon in Roland Park and got my hair chopped off into a pixie cut.
I had never before felt confident enough in my face to go for such short hair. When I was overweight before, I tried to grow my hair longer or style it fuller, to cover some of the chub in my cheeks and chin. But cancer sucked all that chub away and I found, almost overnight, a much thinner face in the mirror. In fact, in those early weeks when I was getting my port, preparing for chemo, and still dealing with a lot of pain and nausea, I was so dehydrated much of the time that my skin stretched dryly over my jaw, parched and sunken. I knew I looked unhealthy, but I still felt newly beautiful. Thank you, society.
I was pleasantly surprised to find that I loved having short hair. It was so much easier to clean and style, and everything about it just felt effortless and cute. I got used to it pretty quickly, even though I’d always had a habit of twirling bits of my hair around my fingers when I was bored or deep in thought. Short hair was easy, it was comfortable, and it helped me fear my inevitable hair loss less. It worked for me, and it worked really well.
Until it didn’t. Probably four weeks into my chemo, my hair started to change. My scalp got tingly and sensitive, always feeling like I was pressing a cowlick the wrong way, or like I had raging hat hair. A new forest of flyaway hairs sprouted all over my head, like Seussian fluff waving in the breeze. Combing my hair was dangerous, and showers became agonizing. No matter how careful I tried to be washing my hair in the shower, I started losing multiple fistfuls of hair every time. My growing collections of fallen hair on the bathtub rim, and the thick coating all over my palms every time I ran my hands over my head, sickened me. I wasted water just standing in the shower, trying to clean up this tremendous loss. When my hair was dry, it shed constantly, and I had to grab handfuls of flyaway hairs off the sides of my head, to avoid looking like a demented clown. The volume of loss was startling. It was all too visceral.
One day, after another soul crushing shower, I spontaneously buzzed my hair all the way down. I had stepped out of the shower and tried to comb what was left on the crown of my head into some respectable comb over, and got so incredibly sick of it. I pulled out my husband’s Wahl trimmer and the number four attachment, and stared hard into the mirror. Suddenly nervous, I pulled up the YouTube app on my phone and searched for helpful videos. There are actually a huge number of YouTube videos of women buzz cutting their hair, as tutorials or triumphant celebration videos. I watched parts of a few to get the general idea of the best technique (try to do it evenly, in sections, but you can always go back and clean it up), and to get pumped up for my own impending triumph. My heart racing and my hands slightly shaky (although they almost always are, because of my diabetes), I looked myself straight in the eye and buzzed down the center of my head. That first pass was exhilarating, maybe even a revelation. It taught me that I can do something brash and reckless, and that I don’t have to let my illness just make me sad. It also taught me that lady buzz cuts are kind of sexy.
I trimmed and trimmed my hair, shaving off the clumpy mess and carving a patchy field of sparse red tufts. I worked until I was almost late for my acupuncture appointment, then threw on one of the polyester turbans I had just ordered from Amazon and ran out the door. Arriving a bit out-of-breath and frenzied, I told my acupuncturist what I had just done, and pulled the cap off to show her. She complimented the new cut, but I think even if she hadn’t, I would still have felt beautiful and powerful, and least for that triumphant day.
Once, at chemo infusion during the time when everyone wore masks because of the flu outbreak, my nurse stopped abruptly, walking across the suite. When I had walked in that day, I slowly noticed that everyone was wearing masks. It didn't seem odd at first, but then I thought about what it meant that I didn't know to wear a mask, and I felt for a moment that I was in an apocalyptic zombie movie. There was some threat, worse than the usual threat in a cancer ward, and everyone else was protected against it but me. But I still didn't want to wear a mask. I hate those masks, the way they hold your breath in against your face and scratch at your ears. For me, they always make my glasses sit askew and slip around, and if I'm not careful about how I breathe, my breath fogs up my glasses. They make me feel like a doofus, an uncomfortable doofus who can't quite breathe. As it turns out, it was just a couple flu cases among patients and staff that led to the mask proliferation. No one wants to get the flu, least of all cancer patients, so this seemed reasonable. Still, it was hard to see with my breath fog constantly on my glasses lenses, and it's hard to communicate with only your eyes visible.
My nurse stopped, turned, and walked straight over to the nurses' station, where I suddenly noticed that three people were gathered. She gave a long and heartfelt hug to the older man standing there, seemingly holding her breath. I noticed other nurses and techs looking on quietly, and I wondered what was happening. I looked away, sensing that this was a private moment that deserved respect, and there's already such a shortage of privacy in the chemo pods anyway. I wanted to know what was going on, but I also didn't want to know at all, because I could tell it was something heartbreaking.
The hug ended and my nurse stepped back. The man started talking while my nurse wiped her eyes and sniffled. All I could hear was "This was her best year," and my heart sank. His wife had died. She had had pancreatic cancer. The man introduced the two younger people standing next to him, as his daughter and her boyfriend. The woman's eyes looked a bit puffy above her mask, and the man looked uncomfortable. My nurse nodded a lot and seemed to smile behind her mask, and the man mentioned something about visiting. Then the three people left and my nurse stepped behind the nurses' station, and everything quickly returned to normal.
Death doesn't happen that often in these chemo suites, but pancreatic cancer still has one of the lowest five-year survival rates at only 8%. I've often wondered what it's like for these nurses and techs to care for people who are so sick, and facing such rough odds. They see us come and go, weekly, monthly, and they monitor our progress with stats and intuition. They see in our lab results that our platelets or white blood cells are low, but they can see in our faces that we're depressingly fatigued, in our thin frames and pursed lips that we can't eat, in our wrinkled brows and tense shoulders that we're in pain. How much does this pain them? I heard on the radio recently that ICU nurses report the highest burnout rate of all health care professionals. I wonder where oncology nurses fall on that spectrum. I wonder, also, how much they think of us when they go home, or when we take an extra week off and they haven't seen us in a while. And when we die, how do they get over the fear that yet another patient will die? Do they miss our family and friends and wish they would visit after we're gone?
When I first found out I would have to do chemotherapy, I was terrified. I really had no idea what to expect. All I could think of was childhood memories of that ‘90s movie Stepmom, and images of head scarves, sunken cheekbones, vomiting, and smoking pot. It was only later, after I’d started chemo, that I remembered my childhood best friend’s mother, who died of breast cancer when we were both less than 10 years old. I didn’t know then that she was doing chemotherapy and I had probably never heard the word, but I can now realize that she must have. I have hazy memories of her in her last months of life, thin and weak in a bathrobe with a bald head. Who knows if my memories are even true, but what matters more is that “cancer” and “chemotherapy” conjured dark and scary images in my mind.
Although, a few months before my cancer diagnosis, in the middle of the painful and confusing complications that led up to that diagnosis, I read Eve Ensler’s cancer memoir, In the Body of the World. This book was transformational for me, since it gave me a strong and honest lens through which to view my own experience of illness. Much of it stuck with me, and when I faced the prospect of my own chemotherapy, I remember Eve’s words about her chemo, her port, her infusion suite.
“There is something about getting anything foreign inserted into the body that is both downright creepy and fabulously supernatural.”
This helped me, this made me feel proud of my port before I even got it. This made me feel, in some confusingly feminist way, that choosing to allow this foreign object into my body was a mark of my strength. And then about the chemo itself, her words are brilliant:
Her former therapist told her, “‘The chemo is not for you. It is for the cancer...Chemo will purge the badness that was projected onto you but was never yours...Your job is to welcome the chemo as an empathetic warrior, who is coming in to rescue your innocence by killing off the perpetrator who got inside you.’”
I repeated this mantra to myself as I prepared for my first chemo infusion: “The chemo is not for me, it’s for the cancer.” Before I knew what the Hopkins infusions pods look like, I took my imagery from YouTube videos of people vlogging their chemo days, and imagined myself sitting upright in a vinyl reclining chair, blankets piled up to my collarbone, IV tubes extending from me, and my palms resting face-up on the armrests as I accepted the chemo into my body. I talked to my own therapist about how to handle these vital moments, when the poison would be pumped into my body, and decided to repeat my mantra and visualize the chemo coursing through my veins, winding its way to my tumors, and engulfing them like holy drain cleaner.
At my first infusion, much of that flew out the window. I quickly realized that there was no space for that kind of quiet, noble dignity in Pod G. There was simply too much activity, too many people, too much noise. The outpatient treatment facility at Weinberg, Hopkins’ cancer building, is not state-of-the-art. It’s not even cozy. It’s uncomfortable and awkward and leaves patients feeling exposed and on top of one another. That first day, many people came to sit next to my supremely uncomfortable reclining chair: nurses, techs, a nutritionist, a palliative care nurse practitioner, and probably other people I don’t remember. The time passed pretty quickly. At the beginning, though, as my nurse was setting up my pre-meds, I nervously asked her if I should feel anything as the chemo went in. Months before, when I was in the hospital for what we thought then were abscesses in my liver, the potassium they put in my IV burned through my arm veins. I couldn’t imagine, then, how much chemo would hurt.
But she said, no, I really shouldn’t feel anything and it definitely shouldn’t hurt, especially with my port. One of the advantages of a port is that chemo doesn’t hurt going into large veins, even when the same drug does with a typical arm IV. She told me I might get a little sleepy, I might get a little queasy but probably not because of the pre-meds (Zofran and Dexamethasone, both for nausea), but I shouldn’t feel anything else. And then before I knew it, the chemo was going in, and I missed my crucial, poetic first moments. I think I even forgot my mantra, all five or so hours of that first infusion. It turned out I didn’t need it. At first, chemo infusion was easier than I thought it would be.
For the first two months of my chemo, I was able to hold onto my belief that I could handle it just fine, that it wasn’t really so bad, that it was nice to see the nurses and techs. I quickly became a pro at navigating all the little logistical details at Weinberg: swiping in with my orange card, taking a deep breath when they eased the curved needle into my port, unplugging my IV pole to tote it with me to the bathroom, looking up and smiling at the nurse every hour or so when she came to turn off my beeping IV pump and set up the next bag to drain. I was a #chemosurvivor.
But by April 18th, 11 weeks into my chemo, I really didn't want to be in Pod G. The sounds, the smells were too much for me. It was all rubbing alcohol, industrial plastic, and heparin, beeping, obnoxious TV, and fluorescent lighting. I wondered how the nurses and techs could stand spending so much time there. And I was so tired that day, it hit me in the waiting room. All I wanted was to be in my bed, not those awful "day beds" lining the outer wall of the pod. I just wanted to be with my husband and my dog, listening to the lovely silence in my home.
They scared me that day, too. This tech I'd never met before accessed my port and immediately said, "Whoa, whoa," when she tried for a blood return, frowning at the syringe. She called for my nurse and I asked if it was okay. She said there was a clot, and I looked away and slowed my breathing inside my paper mask. My nurse came over and squinted at my port hookup, but told the tech she could flush it. I breathed evenly and thought about my heart rate while she did, and after another flush, everything was running fine. But still, she did something funny with the tape and it kept pulling just next to my catheter under my collarbone. If I swept the tubing over my shoulder, it sat better and didn’t pull so much.
Starting sometime in early April, any time I thought of infusion or Hopkins or chemo or cancer, I could feel the saline rise up in the back of my throat. It never used to bother me, for, say, the first 29 years of my life. But suddenly, every saline flush by IV or port made me queasy. It was like a tickly ache, a sticky dryness, a sickening fur of chemicals on the back of my throat, and I couldn’t get rid of it. Maybe it was actually the heparin, I didn’t know. Whatever it was, I hated it.
And then after a couple hours of being poisoned, the pod started to smell like tacos, like ground beef and powdered taco mix. They let everyone bring in outside food, so the pod randomly smells like Balducci's salads and fried fast food, and that day, cheap homemade tacos with cold flour tortillas from a plastic package. It was vaguely appetizing, but not enough to overwhelm the saline-heparin fuzz. I really hated that place that day.
This morning I woke up with a narcotics hangover: migraine, nausea, and the roaring return of the same exact pain. Maybe I shouldn't have done the celiac plexus block last Thursday, because that was supposed to reduce or eliminate my pain, but I've had continuous pain since immediately after the procedure. Maybe this pain now, my usual dull ache pancreas pain accompanied by sharp pains down the left side of my abdomen, is all from my enlarged spleen. My spleen: holding onto platelets and making me ache, the little sneak. Maybe it's all brought on my stress, and that's all my fault right now. Maybe if I meditated more or stopped freaking out about the future so much, pain wouldn't rear its ugly head so much.
Well, the truth is that today, I have no idea what I'm doing with my life (or what's left of it). I found out yesterday that I didn't get a new job I thought I deserved, but that I might have a very good chance at the next opportunity (for a lateral move with full-time hours, not a promotion or any position that actually uses my master's degree). Then I wonder, from in the middle of all this recent pain, whether I can really do full-time work while I'm still actively in treatment. Chemo takes a lot of time. For me, it's at least 5 hours every Monday afternoon for 2 weeks on, 1 week off. Then it's the infusion recovery, when I feel like shit and can't focus on much (so often don't make it to work), for at least a full day after infusion. Then, of course, I still have to take my chemo pills, morning and evening, every day for those 2 weeks on. Those aren't so awful, but they still drag me down.
And now if I need some kind of interventional radiology procedure (to "shunt" part of my enlarged spleen so it will release more platelets and boost my natural platelet count, or something like that), that will take at least a day, plus possibly another day for recovery, if it's as painful and traumatizing as my liver biopsy was (also done by interventional radiology). Seriously, their jobs must be the worst, because they basically stab sick people who are still awake. All you get is local anesthesia, then they come at you with an ultrasound wand and vicious needles. Only after doing this procedure and testing my blood counts again to be sure it worked, can I go back to chemo to continue my treatment. In the meantime, who knows how much pain I'll have to live with?
So should I even be trying to get a new job in the first place? Should I just sit tight where I am, focus on doing that job well, and leave myself plenty of time for self-care and treatment appointments and recovery time? It's true, cancer is a full-time job. Or at least a part-time one I'm trying to work in around my real part-time job. And all of this is so exhausting and demoralizing that after a while I just want to curl up in a ball and make somebody A) Take my cancer away and B) Make decisions about my life for me. And even after that, I'd probably still wonder whether anytime I'm spending time on (work, household misc., etc.) actually means anything valuable at all when I have a possibly terminal disease, on top of two other chronic illnesses.
This time, instead of curling into said ball, I decided to take a little drive to my favorite part of Baltimore, Hampden. I went to the shop my husband and I always walk through, more for old times' sake than for actual shopping. (This time, though, I did need a nice birthday card for him.) And I happened upon some silly little tchotchkes for sick people (in the get-well-soon greeting card and gift section of the store):
I ended up not buying any of these delightful little things, but now that I'm home and I've looked up their websites, I definitely respect what they do. Maybe I'll go back and get these, despite my initial misgivings. The little crossed fingers pin really hit me at the right moment. I was feeling so down and lost, so unsure of what I'm even doing with my life. At those times, it's helpful to see a reminder of that age-old convention: "things will work out fine." Then I thought to myself, ever practical, where will I even pin this? Will I ever wear it? (For $11?) Then my darker side kicked in and I wondered, do they really, the things? Will things really work out? Honestly, I don't know, and no one does. That's part of life as we know it. But maybe I don't need a constant reminder that I have zero control over my own future, and that blind faith in my idealistic dreams is exactly that: blind faith.
I was definitely happy to see any representation of a pancreas anywhere, but this keychain one is maybe a little too doofy and spiky at the same time. The liver pin is pretty great, though. If I worked in health care, I'd definitely wear these. I might wear them to PANCAN events. I don't think I'd wear them at work, next to my name badge. But that just might be because I'm not ready to invite conversation about my cancer with coworkers or members of the general public (I work in a public library). And I like the chemo IV bag decals, and really appreciate the story behind them, but I'm not sure that the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins would allow me to put stickers on my IV bags during chemo infusion. But, something like this sweet little felt brooch from yourorgangrinder on Etsy, yes, this I could get behind:
I have hereditary pancreatitis, with the SPINK 1 PN34S mutation, pancreas divisum and a history of pseudocysts. This is also sometimes referred to as chronic calcific pancreatitis. I now know that I have had this disease my whole life, but it first presented when I was nine, with an attack of acute pancreatitis.
After many years of treatment, various phases of illness, and nearly nine years of no symptoms whatsoever, I developed LADA, latent autoimmune diabetes in adults, or type 1 1/2 diabetes (which essentially acts like type 1). I am insulin dependent and have successfully managed my diabetes with an insulin pump and continuous glucose monitor (CGM) for a year and a half.
Over the past year, my chronic pancreatitis symptoms have returned, along with several new complications. I had new symptomatic pseudocysts in early 2015, which were successfully drained by endoscopy in June 2015. I developed a biliary stricture and jaundice later in the summer, and had three endoscopies with stent placement to address these complications in my common bile duct. In November 2015, I was hospitalized for a week with what looked like abscesses in my liver.
Also during summer 2015, I started evaluations for total pancreatectomy surgery at Johns Hopkins Hospital. This was clearly the best treatment option available to me, since it would have been the only way to successfully remove all of my genetic disease and mechanical malfunctions. Since it is such major surgery, my doctors and I felt there was no rush and planned to do the surgery in summer 2016. Unfortunately, in January 2016, we discovered that what we thought were abscesses in my liver are actually malignant tumors, and because of this and vein compression in my abdomen (making surgery extremely risky), total pancreatectomy is currently not an option for me.
On January 19, 2016, I found out that I have adenocarcinoma in my liver. I was referred to the Pancreas Multidisciplinary Cancer Clinic at the Kimmel Cancer Center at Hopkins. On Tuesday, January 26, I had a full evaluation and treatment plan consultation with my new oncology team. They diagnosed me with stage IV metastatic pancreatic cancer. Fortunately, my only metastases are five tumors in my liver. There is one tumor in the head of my pancreas, in the center of a cluster of non-cancerous pseudocysts. I also have peritoneal carcinomatosis, or the spread of cancer cells to the abdominal lining (which is common in all GI cancers). It appears that none of my tumors are particularly large.
My only treatment option to start is chemotherapy, because I need to attack the metastatic cancer systemically before trying any other treatment like immunotherapy or radiation. Fortunately, my doctors started me on a low-dose chemotherapy regimen, GTX-C (Gemcitabine, Taxotere, Xeloda, and Cisplatin), rather than the aggressive FOLFIRINOX chemo more commonly used to treat pancreatic cancer. Even more fortunately, GTX-C is working incredibly well. After only five rounds of chemo, my tumor marker number (a blood test that measures total active cancer cells in the body) dropped from 385 to 31 (the normal range is 0-36). I will continue on GTX-C as long as it is working and as long as I’m tolerating it.
My doctors won’t say for sure, but I suspect that I will only be able to stop chemo if my CT scans show that the tumors have disappeared. Even while cancer cells are dying off from chemo, it takes a while for the immune system to metabolize and reabsorb tumor cells. I might be a candidate for immunotherapy clinical trials in the future, after finishing chemo. There is also a small chance that I might be able to do surgery in the future, if my abdominal vein compression changes or if my tumors, pseudocysts, and inflammation reduce enough. At this point, though, I am in extended, low-dose chemotherapy treatment, managing my cancer as a chronic illness.