Vials of Love

Below is the text of a piece that I had the honor of sharing last night as part of "Syllable: A Reading Series" at La Paloma Sabanera coffee house in Hartford, Conn. Reading such a personal piece – out loud – to an audience of fellow writers and lovers of literature was both terrifying and comforting. I thoroughly enjoyed listening to the varied works of the nine other writers who put together poems, song lyrics, fiction, and nonfiction – all set to the theme of love. What a wonderfully talented group of people and a fantastic platform for writers. I was so happy to have been given the opportunity to take part. 

"Vials of Love"

I love a woman whose name I don’t remember. In my musings about her, I call her Ona or Aziza or Albutus – names that are strong, gutsy and exotically Eastern European.

I love this nameless woman something fierce. It’s not a love driven from deep in the loins. There is no primal sexual attraction. Though she is old enough to be my mother, the love I hold for her is not of daughterly admiration, nor is it a love of friendship or convenience. It’s an uncomplicated, organic love from one human being to another. It’s a love of deep appreciation and gratitude for the compassion and respect she displayed in a situation where sterility, ache and isolation ruled supreme.

Even if my love is unrequited, the compassion she displayed toward me was humbling and unforgettable. I’m sure she’s moved on to spread her love to the next hundreds of stem cell transplant patients, each enduring the intense recovery that follows replacement of their entire immune system. No doubt she is there holding hands, petting bald heads, arranging someone else’s stuffed animals against their thin hospital pillows to greet them when they get out of the shower. But it’s okay; I’m willing to share her.

She probably loves me like she loves any of the other cancer patients that she cares for. A love of compassionate obligation? Or was it something more? If it was just “doing her job,” then that woman far surpasses all stated requirements of a “Patient Care Technician.”

Even though a protective mask always covered her mouth, I didn’t need to see her lips to know she was forever smiling. She wore far too much floral perfume and the nurses lovingly remarked that her breakfast of early morning meat chunks at the nursing station would make them all gag. She told me it kept her strong. Her eyebrows were drawn on following a curve that was too drastic in a color that was too orange.

Her words always bubbled over like a pot of water left to boil too long. Her body had the mountains and valleys glorified in Renaissance paintings of nudes. Shiny and polished, her porcelain face was dominated by cheeks rounded out as if in permanent trumpet blowing position. The plump flesh of her stockinged feet seemed to pour over the sides of her thin-walled nursing shoes. She was thick and strong and radiant.

I love remembering this Ona/Aziza/Albutus like I love burying my face in a warm towel right out of the dryer. I love her like I love the whirr of our garage door opening each evening, signaling the arrival of my husband. I love her like I love the feel of our dog’s determined snout snuggling its way in to rest on my lap. If it’s something that brings me comfort, it circles back to her – her voice, her authoritative, but encouraging touch, the bedside talks we had, her reminders to me of the simple fact that I was okay, I was beautiful, and I was loved.

I wrote very few words during my 28 days as a quarantined hospital inpatient on the transplant floor at Sloan Kettering Cancer Center. But there was one note I typed on my phone on July 1 at 2:06 pm, four days before my hospital release. It was a quote from my beloved care tech that I’ve held in my heart ever since.

Every day when she came into my room, she’d glance at the chart on the wall that tracked my blood count numbers. They were finally improving and she rejoiced, dramatically:

“Beautiful numbers for a beautiful girl! Just perfect! Just great! Everybody loves you!” She said it like a bird cooing at me, infusing great joy. Her comment resonated so much that apparentely it drove me to type it out – never wanting to forget it. 

Her comment came at a time when I felt so ugly and so imperfect. I remember it so vividly I can hear the strong accent of her voice perfectly clear in my head.

Her voice was sing-songy and rolled like a lion’s purr at the back of her throat in a way that both soothed and infused energy. She brought in a beam of sunshine, an ethereal presence amid the constant barrage of the cold metal stethoscopes and the stark antiseptic white of doctor’s lab coats.

“Go shower; You feel good,” she’d push. “I make your bed while you get dressed. Look, I lay out your towels, soap, wash cloth.” She’d open the door to the nondescript bathroom as if it were a palace of marbled floors and brass fixtures. It was far from it.

She was really there because patients like me were not allowed to shower without someone in the room for fear that we would fall from being so weak and woozy. Every morning just as the sun was rising she’d come in to get me going.

“You ready beautiful girl?” she’d ask as she burst in the room donning the requisite mask and gloves, interrupting my quarantine daze with the cheerfulness of a three-ring circus. It was like being greeted by a life-sized colorful Russian stacking doll.

If I groaned that I wasn’t ready for a shower yet, she’d give me more time.

“It’s okay; I be back,” she’d coo. And, she always came back. In a place where there was so much unknown, she was my constant. Her job was to get me up and out of bed and ready for the doctors to come in on their rounds. She ensured that I showered, cleaned, dressed, and moved out of the dreaded bed to sit on the chair in the beams of sun that came through the window.

I remember nothing of the details of what we spoke about, but I do remember how our morning conversations made me feel. She made me feel like a princess to be pampered. She’d wash the overnight spattering of my vomit off the toilet seat back while humming the polka in her deep guttural tone.

She’d clean from the shower the heaps of curly black hair that had tumbled from my head when the chemo got to successfully destroying all of my follicles. It fell to the tiled floor in chunks as I shampooed. It’d swirl around the industrial shower drain, sticking on its way down to the cheap, plastic excuse for a shower curtain and the sliver of antibacterial Dial soap I had to wash with. 

I’d groggily apologize and she’d brush me away with a soothing and musical: “Don’t worry. Relax, sweet girl.” 

She was a bottle of effervescence who complemented the infusions of chemotherapy, steroids, fluids, vitamins, blood, pain meds, and antihistamines.  She injected me right along with the shots given by the parade of kind nurses, but her vial was filled with love in the liquid form.

Those infusions were the daily boosters I needed to push past the sadness and lean toward the light. What is love but rejoicing in the sight of a face and the sound of a voice that is the first that you see in the morning? It was hers that woke me and calmed me on 28 mornings when I could barely see or hear anything else at all.

Compassionate love can transcend a mind and body blurred by heavy narcotics and fear. Love can carry the hope that is vital to making it to the other side alive. That love can come in the most unexpected of packages. Mine just happened to be in the form of a Russian cherub who ate marbled meat for breakfast and tucked the tightest hospital sheet corners I’ve ever seen. 

Favorable Response

Not expecting to hear a thing until Tuesday and totally accepting of that, I received a call at 6 p.m. on Friday evening from my Sloan oncologist, Dr. Craig Sauter. Yes, a Friday night, and not only that, but he was in Michigan and just thought that I'd like to hear the initial news before entering the long weekend. This is a sign of a fantastic oncologist and most certainly reinforces my decision.

I had gotten my PET and CT scans only the day before but as I know from past experience, initial results are available nearly instantaneously, it's just a matter of whether anyone decides to share them. He cautioned that he does not have the final report from the radiology team, but that he wanted me to know that on initial review it appears I've had a "very favorable response" to the GND chemo. This means the cancer, or at least the vast majority of it, is gone. We celebrated with buffalo chicken pizza. I will find out more details on Tuesday, but this is fantastic assurance that everything I have endured and everything I've been working so hard at over the past few months has been worth it.

Now my sister is scheduled for her own donor appointment with the nurse practitioner on Tuesday. The ball is rolling. This is assuring, exciting, scary and unfathomable all at once. Like a circus artist, it feels as if I'm balancing on top of a rolling ball trying desperately to shift my weight and keep my footing as it changes speed and direction along this unpredictable course. I was stopped against a wall for a bit there, but now I'm again on the move.

The day of my scans, we took the 6:23 a.m. New Haven train into NYC after an hour drive from our home. I was tremendously tired and both eager and anxious for the test I had been "studying" for over these past weeks. The train was filled with CT to NYC commuters. Lots of iPad clutching, dry cleaner pressed business suits on board, all zoned into their normal morning routine. Though the train was jam packed, hardly anyone spoke, all of us getting our early morning bearings, adjusting to the light of another day and whatever challenges and opportunities it held.

Our day had its challenges: getting to step into one of the hospital rooms I will be living in and taking in how close the four walls really are, navigating the bus transit system, walking block after block on no food or fluids per pre-test orders, drinking more than 1,000 ML of pink oral contrast. However, it also had some huge opportunities.

To make the most of our trek in, we had scheduled a meeting at a possible apartment. Craig and some of our NYC familiar friends had been doing Craigslist and Google sleuthing for weeks to try to find a place for Craig to live in/rent while I am an inpatient for more than a month. This way he would not have to sleep on the oh-so-cozy looking pull-out chair in my hospital room with gloves and a mask on every night. It would also provide a place for my family to crash on the days that they come down to visit. As one just might assume, NYC rental rates are outrageous and the unknowns of my case makes it difficult to commit to a lease or a set timeframe. Could be 20 days. Could be 120 days.

However, we are not the first people to be in this situation and we found an organization that caters to people exactly like us and could not be more astounded with how ideally they function. Most appropriately, it is called Miracle House. We met the patient coordinator, Majo – a fantastically animated, sporty and witty Slovakian – at the high-rise apartment complex where the five three-bedroom apartments operated by Miracle House are located, just 3 blocks from Times Square. Though it isn't free (it'll be like a second mortgage payment) the nightly rate is the most affordable we could find and what comes with that rate actually brought us both to tears.

Majo is one of the nicest most comforting people either of us had ever met. To every question we had, his response was "no problem, we'll make it work." We don't have a firm entry or exit date. We don't know who exactly will be sleeping there on any given night. We don't know if I'll need to be living there after I'm discharged. It didn't matter. They will make space for us and providing a solution to those scenarios is why the organization exists.

Miracle House was founded 20 years ago with the caregivers of HIV/AIDS patients in mind. Patients were flocking to NYC in droves as that was the place to find the life-saving treatment that they needed. However, there was nowhere for their caregivers to stay that was necessarily affordable and safe – the last stress anyone needs when a loved one is faced with a catastrophic illness. Since then, it has expanded its mission to people traveling to receive any type of critical medical treatment in the city – a vast majority whom are cancer patients ... many being treated at Sloan for its world-class reputation.

We had found housing that will put patients up (like the American Cancer Society's Hope Lodge where we'll be likely be living after I am discharged), but nowhere that would put caregivers up without the patient there. The droves of research to try to find some kind of place that we could afford on top of everything else was taking a toll on Craig. Finding this place is a huge piece of the puzzle now in place. My family will have a furnished bedroom with a private bathroom and a suite style shared kitchen and living room with two other sets of caregivers. It's bare bones for sure, but all of the essentials are there.

It puts me at great ease knowing that those that I love so much will also be being taken care of. Not only will the Miracle House apartment provide a safe, comfortable place for my husband and our parents/siblings/friends to sleep, but they will also have access to all the complex's amenities, including a gym, pool, laundry room, theater, rooftop deck, etc. The pantry is stocked with go-to items provided by the organization. Volunteers take whomever would like to go out to complimentary breakfast every morning, dinner three nights a week, and Saturday brunch at a nearby diner.

Those taking part in the meals are people from all over the country/world and are themselves or have a loved one going through a difficult medical treatment. The purpose of volunteer facilitated community meals is for people to have others to relate to, laugh with, cry with, and lean on. There is everything from Reiki services to counseling provided free-of-charge to those living at Miracle House. Again, it is a Godsend and I hope that it will be healing for my family who is grappling with such a traumatic undertaking. We'll all be away from home and that's not easy.

I've said this before, but I think the job of the caregivers is much more difficult in these situations. I know how I feel. I know I can do this. I know what's going through my mind and what's happening in my body, whereas they have to watch and wonder as I go through my ups and downs pushing themselves to stay strong for me and to do whatever they can to alleviate my hurt. I can only hope that the Miracle House will allow them to unwind and bitch and cry about me without having me in earshot. Let's face it, I'm not always an easy patient.

Once that hurdle was crossed it was the 50-minute bus ride across Manhattan over to Sloan's Imaging Center for my scans. The facility was beautiful. Opened just a year-and-a-half ago it was bright, clean and modern. The waiting room was full of patients lounging in the couches and chairs sipping out of their clear plastic bottles of pink liquid which filled their intestines with dye to be picked up via whichever machine they'd be tested in.

For me, it's old hat, this being my sixth PET Scan in just 14 months. However, the process has been a little different at each facility. And, I was also photographed via CT Scan in the same machine. After a nurse accessed my port and injected me with the normal radioactive substance, I was left alone in a little room and given 45 minutes to drink the 1,025 ML of "Gastroview" to make the radioactive material visible. It tasted like raspberry Crystal Light. I cuddled up with the fresh-from-the-warmer blanket they gave me and started reading The Girl With the Dragon Tattoo.

The nurse came back to get me and I was led into the scanning room. I climbed onto the familiar narrow cradle and took in the tunnel ahead of me with a deep breath. I laid on my back under a blanket, my madras skirt at my ankles so that its metal snaps wouldn't affect the picture. On the ceiling was a huge, round hand painted treetop scene that made it appear as if I was laying under the beautiful green of a tree and looking through its leaves at the sun.

More injections came through my port which filled my body with heat and made me feel like I wet myself ... a side effect they always warn about. Then, arms interlocked above my head and my legs dangled over a pyramid shaped bolster, into the tunnel I went. For 25 minutes the machine whirred around me. After just about three of those minutes I was sound asleep and woke up to the jolt of the technician's voice over the speaker:

"Just a couple more minutes. You doing okay, Karin?"

"Yup. I am okay," I replied.

Not only okay, but feeling ready for the next step.

Be Your Own Advocate

After six days as an inpatient and a total of over a month spent in the hospital this spring alone, I can't express how much I appreciate a good nurse – and maybe even more so – a good PCA. But even with the best care, it's so important for anyone who has to go through this to know how vital it is to be your own advocate and to have a full understanding of the care that you are supposed to receiving, the drugs you are supposed to be getting, when you are supposed to be getting them, and keeping track of your symptoms. You must pay attention.

I consider myself to be a pretty intelligent person and the journalist in me prompts lots of question asking and fact gathering. Every single day I've been here my heart aches for cancer patients for which English is their second language or who just can't wrap their head around all the medical terms or who just zone out and leave it to the nurses and doctors to handle. I can empathize with why other patients may be like that ... they don't want to know what's going on, they just want to close their eyes and get through it because it can be really, really overwhelming, but that does not work for my personality. And I'd venture to say that that's the case for most other young adults in my situation. I have caught so many near mistakes and told so many nurses how to do things that it's quite scary.

To be fair, I realize that no one knows my individual medical case nor my body better than I do and I've been watching people treat it and care for it for more than a year now. But I did not go to nursing school and I don't deal with patients all day every day. I do not comprehend how those that do still cannot draw blood, work on a cancer floor and can't change my port dressing or don't know tricks to get blood from my port if it is being finicky. I just spent 20 minutes with the nurse who couldn't get more than a little blood. She had no idea how to problem solve. I told her that when it happened in the clinic once they had me breathe, cough, lie very far back, put my arm up and I walked her through each of those things to try.

This is the longest stretch that I've ever been in the hospital and unlike just getting chemo which requires action for only about five hours of the day, I require a lot more work and obviously the lazy nurses do not like that. I had contact precautions instituted meaning that anyone that comes in needs to put on a gown, gloves and a mask first. The number of people checking on me reduced dramatically. I never even met my evening PCA and my night one has checked my vital signs once despite the fact that they are supposed to be monitoring my incessant fevers so closely. When I ask the nurse again if he would be coming around to check I hear that he is "rounding" ... well I am "burning up."

The dinner delivery person apparently didn't want to deal with putting those precautions on either. After 90 minutes passed from the time of my order and my food still had not come I called up front and the nurse dispatcher person said she would check if it was in the communal kitchen area. Didn't hear back for another half hour. Called again. She said she was sending my PCA to go look. Finally he comes in with the tray which was salmon and rice and says he found it in the nourishment room. I had been delivered at 6pm and therefore had been sitting there at room temperature for two hours. He told me that he microwaved it for me so hopefully it's hot enough. Are you fucking kidding me, I thought? I'm neutropenic, on a low-bacteria diet and I'm going to eat a tray of food that has been sitting out for two hours? And you can't tell me that no one ever walked by that tray. The "not my patient" or "not my job" attitude is ridiculous. So I ended up with pasta on a styrofoam plate at 9pm.

Some nurses will leave wrappers and caps from syringes and bloodied alcohol wipes on the bed and I'll find them in the sheets. The other day I had to wait hours for someone to come and change my bedding. I was so tired and wanted to take a nap but my sheet was covered in blood from the massacre that went down when – God forbid – they had to take blood from my arm.

I had to force one nurse to go look back at the orders when she did not believe me that it is protocol to give Tylenol and Benadryl before a blood transfusion. After she checked the computer she came back in with a Bendaryl pill for me and didn't say a word. I've broken out in hives from platelets every time even with Benadryl beforehand and had to get more during ... can you imagine what would happen if I didn't speak up?

And the absolute worst is the "shift change void." If you need something between 6:30 and 8 a.m., 2:30-4pm, or THE worst, 6:30-8pm, you're screwed. The worst was Tuesday night when at about 6:30 violent, shaking chills came on. Again, my sheets had not been changed and were sweat-soaked from breaking fevers the night before so I was sitting up on the couch wrapped in a blanket uncontrollably shaking, my teeth chattering. I knew a fever was coming on and I knew that Tylenol would stop the chills. This is what has been happening every four hours.

I called for the nurse, told the dispatcher person what was happening and she said, I quote: "Well, it's shift change ... I'll see what I can do." Half hour goes by, no one comes. The chills are more overtaking. I call again, say that I am spiking a fever, that I need Tylenol. Again, "It's changing of the guards" and some babble and as I continue to protest she just hangs up. Craig goes out in the hall to find someone, anyone. The nurse he talks to says "oh, I thought I took her vitals before ... ", mumbles something else, her phone rings, she takes the call and literally just walks away from him. Ninety minutes later my night nurse comes in and at this point I am in tears explaining to her what happened. She said she came in as soon as she arrived, which I knew was true as she is a fantastic nurse who I was lucky to have for several nights. My temperature had risen all the way to 103. She already had Tylenol in hand and gave it to me immediately. Apparently when the afternoon nurses are done, you are dead to them.

To counteract the frustrating caregivers, I have also had some phenomenal, phenomenal nurses and PCAs that have gone far above and beyond. They've been efficient, proactive, anticipate my needs and are right on top of things. You can tell that they generally care and that they are in this profession to help people.

And when you get a good nurse and PCA at the same time that work as a team, it's heaven. The past three nights my duo has been amazing. They would coordinate so that when the nurse came in to draw labs or to change over meds the PCA would come at the same time and do my vitals so that I wouldn't be woken up twice. They brought fresh ice water without me having to ask and checked if my hat was full every single time. I tell you there is nothing worse than overflowing your own pungent antibiotic laden urine over and over until they decide to come empty the hat that I have to pee in every time.

It makes all the difference in the world when you are treated with respect and kindness, when the nurse walks you through the care plan for their shift, when they tell you what is happening with your bloodwork, what you can expect to happen next, when they check in just to see if you might need anything, and when they spend the time to talk to you, show compassion, get to know you. Compassion is the big thing and you know if they have it or not within the first 15 minutes. Some are just going through the motions but some make it their mission every shift to be sure that you are as comfortable and as cared for as possible because they understand what you are going through is pretty close to hell. A smile, laugh and a gentle touch on the arm go a long, long, long way.

I have also been more than impressed with the oncologists, hematologists, residents, fellows and interns working on my case. They are all at once extremely intelligent and extremely caring and do such a good job at making something as abstract as a stem cell transplant understandable.

I suppose that there are individuals who are outstanding, so-so, and terrible at their jobs in every profession, but in this one it's lives, not printer cartridges that are at stake. Even in my most frustrated moments I maintain my devotion to the "kill 'em with kindness" method. There are ways to stand up for yourself without snipping and bitching at people. And the reality is that like them or not, that is the person that is going to be caring for you often times for the next 12 hours and when you need something you don't want to be the patient they ignore. Plus, they're the one wielding the needle.

When I'm appalled at a transporter pushing me on a stretcher to x-ray and groaning about how long of a day it's been for him or a nurse telling me how eager she is to get out in two hours I constantly go back to the Plato quote: "Be kind, for everyone you meet is fighting a hard battle," but sometimes it's hard to swallow people's insensitiveness. I'm pretty sure that at this moment in my life my battle is probably at least on par with whatever one they are fighting that's making them drag their feet and moan in gloom.