Scave

I realize I missed last week’s blog entries, but I have a good excuse. I was computerless and breathless and enduring a regular shit storm of fear, anxiety and frustration. I was very “scave” on Tuesday as I swallowed some tough news with some good news and realized that I’ll have to make some very big decisions. Those that have read Emma Donoghue’s book Room know what “scave” means: a combination of scared and brave, a mentality that helps a five-year-old cope in an extreme situation that calls for him to be hero. It’s hard to be brave all the time, and no one wants to be scared. Being scave is the sometimes the best way to cope.  

As the prior week progressed, so did back pain. It started as a mild uncomfortable feeling then swelled immensely in my mid-back with a penetrating, emanating fierceness. But I had plans to attend what I knew would be a transformative and healing weekend at a workshop with one of my favorite wellness gurus, Kris Carr of CrazySexyLife.com, at the Omega Institute in Rhinebeck, New York. I was right. It was just what I needed, and I’ll write more about the lessons I learned there. However, I needed a whole lot of ibuprofen and bags of ice from the first aid office to get through my time there. My little dorm room was way on the top of the campus hill and with each day it became increasingly harder to get up there with any breath left.

I knew something wasn’t right and debated a few times leaving the wooded campus for Manhattan and checking myself into Urgent Care since I couldn’t reach my doctor over the weekend. But I knew that there would be enough poking and prodding to come and that one more day wouldn’t kill me, so I enjoyed Omega’s offerings of healing and connection through the remainder of the weekend. I’ve come to learn when I can push the limits of addressing and ignoring the medical issues that creep up and am now more selective with my freak-outs after years of experience. I’ve also become good at making excuses to myself when I don’t want to acknowledge that I’m still dealing with this. I had done a lot of paddle boarding the previous weekend so of course that was what the back pain was from. The air was real thick so that’s what was compromising my lungs. And the dizzy spells? Well, it was only because I was sitting on the floor for long periods of time in workshops.

But excuses can only be made for so long when living in a world where disease reigns supreme. Come Monday, I made the call to my lymphoma doc and they didn’t like what I was telling them. At this point I had started to suffer from choking coughing fits that brought me scarily close to being unable to catch my breath gagging and gasping like a drowning person. As I assumed would happen, my team pulled some strings and got my PET Scan bumped up to Tuesday – a dauntingly early appointment that had my parents and me on the road at 5 a.m. They were kind enough (and probably worried enough) to offer to drive me in.

The PET Scan went fine; it’s completely routine for me now, though the anxiety still rules as much as ever and most definitely contributed to my back pain. I was so delirious though that I slept during most of my time in the whirring tube. This was the first scan done since starting the most recent SGN-35 drug regimen three months ago.

We then had to kill time. Nothing better than having to wait six hours to see the doctor and go over whatever the pictures might show. There is no way to prepare for the unknown and the feelings of angst and worry can be gnawing. It was assuring to have both my mom and dad there with me to distract me and to keep me mildly sane in between coughing bouts.

We walked from Sloan-Kettering to Central Park as it was a beautiful, though sweaty, day. We chose a bench in the shade and people watched then moseyed to the sailboat pond of romantic comedy movie fame. My dad rented one of the remote control boats for a half-hour stint and we rotated turns operating its rudder and sails to catch a gust and send the sucker ripping across the water. It was quite exhilarating and interesting to watch the mechanics of it and navigate around the other meandering boats.

For lunch we ducked into a literal hole-in-the-ground restaurant just down the street from the 64^th street lymphoma clinic, which had a huge entranceway sign of a cowboy on a horse that always intrigued me. We ate down in a basement full of kitschy Western Americana paraphernalia and noshed on simple eats, though I couldn’t get much of my chicken Caesar salad down as my belly was already too full with anticipation – maxed out.

It was finally closing in on appointment time and eagerly and reluctantly we walked to see Dr. Moskowitz. The news was mixed: The SGN-35 is working. The SGN-35 may be causing lung toxicity. Talk about a rock and a hard place.

It thrilled me to hear that two areas of lymphoma involvement (those in my chest and abdomen) completely resolved with these first three chemo treatments. The other areas of disease in my hip and femur bones are stable. This is huge. It’s the first time I haven’t had any new areas pop up since my donor transplant. Resolved and stable sound great to me.

However, there’s this problem with two big symmetrical shadows on my scan – one in each of my lungs. The spots represent inflammation. It’s this inflammation that’s been compromising my lungs and causing the pain in my mid-back. There’s no easy way to know for sure where this inflammation is coming from, but we have to get it down and try to find the root of the problem before I can continue with treatment.

Here are the hypotheses:

-It is a late reaction to the radiation I had to my vertebrae just behind my lungs

-It is something called “radiation recall” where the SGN-35 could be reinjuring the tissues of my lungs already sensitive after the radiation; the SGN-35 could itself be toxic to my lungs: it is still a relatively new drug that was fast-tracked to FDA approval so the side effects are not yet fully studied and solidified in large patient groups. I’m one of the few losing my hair from it, I hope I’m not one of the few losing my lungs to it, too.

-There’s a possibility that it could be a late Graft Vs. Host effect of my transplant, though Dr. Sauter is doubtful it would present in this way.

-Also very doubtful because of it’s perfectly balanced shape and proximity to the areas I had radiated, it could be lymphoma that metastasized to my lungs. I can’t even fathom this one.

It was this talk about my predicament that made me feel very, very scave.

Dr. Moskowitz wanted to get the bottom of it. Before even seeing me she had been trying to get me into a pulmonary (lung) doctor at Sloan to look more closely at my scan pictures, at me, and my symptoms to help diagnosis what is happening. After much debate and discussion, it was decided that the best thing to do would be to admit me as an inpatient through Urgent Care. This way I would be able to get to see a pulmonologist quickly and avoid the headache of traveling back home to Connecticut only to have to come back again when we could secure an appointment. Plus, there’s that little bit of urgency that I’m due for my next SGN-35 infusion this week and we need to decide what to do with that.

After waiting with my parents in Urgent Care I started to second-guess the decision to be admitted to the hospital. I started to think that it was silly, unnecessary and mostly I was deathly afraid of being in a hospital room again. I hate it. I didn’t know if I could handle it. I didn’t want to be there. I didn’t think I needed it. This problem could wait a few days for me to see a pulmonologist without being admitted.

Suddenly I turned to my parents and said: “Nope, this doesn’t feel right. I don’t think this needs to happen,” then went up to the nursing station to tell them I wanted out and planned to leave. I hadn’t received anything but a blood pressure check as of yet and hadn’t gotten past the waiting room point.

They printed out AMA paperwork. I’d be leaving “Against Medical Advice.” I would have to sign away that I understood that my doctors were recommending an admission and that I was denying that medical warning. A particularly pushy nurse looked me in the eye and told me that my symptoms could be a sign of a pulmonary embolism, that my lungs could be filling with clots, that I could die without medical attention.

“If you throw a clot, you will die,” she flatly said to me.

“Well now you’ve got to get me all freaked out?” I quipped back.

At this comment suddenly my mom was at my side guiding me away from the paperwork and talking me off the ledge. My parents assured me that staying for a workup was the right thing to do; this was not something to screw around with. They would stay at a hotel so they would be close and would come back in the morning to be with me in the hospital. They knew how shaky and resistant I was to being there. I knew that it had to be done as well and sometimes – even at the age of 30 – you need others to tell you that. Craig was looped into the news and also agreed that after the pulmonary embolism threat was dropped on the table that I had to suck it up and don the awful hospital gown. He got on the task of finding my parents a place to stay in Manhattan.

Nothing but an EKG happened in Urgent Care, just a lot of waiting on an uncomfortable “bed” until a “real bed” opened on the lymphoma service floor. On top of the shakes caused by wondering what was happening to me, they wouldn’t let me eat with the assumption that I would be having a bronchoscopy procedure in the morning to send a camera into my lungs to see what was happening in there.

A room opened around midnight and as soon as I entered I heard the wild moans of the woman on the other side of the curtain. It was a shared room and my heart broke at the moans of pain and delirium coming from deep within this woman’s soul. I believe that she was dying in distress. The admitting nurse and I could barely hear each other as she tried to ask me all the requisite questions I had been asked 18 times before that night.

Though there was a nurse there with this poor woman trying to calm her, her moans of “Why? Why?” and groans of ache and crying only got more pronounced. My nurse said to me that if I wanted to be moved to let her know. There were no other female beds on the floor, but they could try to work something out. I told her I could probably manage with my ear buds and an Ambien but once she left the room and I was alone in this scene of horror and sadness I lost it. It brought back awful memories.

It was now nearly two in the morning and I wandered, being as brave as possible while scared out of my mind, shuffling in my hospital-issued non-slip socks and open back gown to the nursing station.

My nurse spotted me right away and I told her that I couldn’t take it. It was far too frightening in that room and my heart was breaking for that woman who so obviously and desperately needed peace. She came out from behind the counter and I started to cry. She put her arm around me and ducked me into the nurse’s conference room, kicking out her colleague reading a magazine in there on her break.

There I sat alone in an office chair at a board room table in the wee hours of the morning until they rotated the woman out to a more appropriate room and were able to send me back in. Just as I fell asleep, another roommate was brought in from Urgent Care awaking me again as I listened to her admission story. I don’t know that I got any sleep. I could only remain focused on why I was there: to see a doctor who could tell me why my lungs were inflaming, how we could fix it, and how we can continue to keep this lymphoma under control.

The morning was a total shock to my mental, emotional, and physical systems. No food and no sleep make Karin an angry girl. Put me in a shared hospital room in that situation where I’m filling my urine hat and balancing it next to my roommate’s in the miniscule bathroom and I’m teetering on the edge.

My parents were there early. I had already seen the rounding residents who told me that they would do their best to figure out the problem and get me out. The idea of a bronchoscopy was still being discussed. Somehow between the early morning rounds and when I saw the hot shit lymphoma doctor on service in her high heels and tight black dress it was decided that my problem was obviously lung toxicity from the drug, I’d have to come off it and find a new plan (good luck with that) and it wasn’t necessary for me to see a pulmonologist. They’d start me up on a course of high dose steroids to get the inflammation down and hopefully at bay long-term.

My mom and I resisted the news, snipping at the resident who came back to fill me in on this updated plan formulated after the doctor’s 10-minute conversation with me.

“But seeing a pulmonologist is the only reason that I’m here. I feel fine except for this issue and I endured an awful hospital overnight to address this issue,” I explained. I didn’t understand. I was so torn because I wanted to get the hell out of there so badly, but I also wanted the trip – and the cost of the hospital admission – to be worth it.

Suddenly, the bronchoscopy would be too risky and apparently a pulmonologist’s time couldn’t be wasted to actually come and take a look at me. I was livid and confused because it seemed to be a complete 180 degree flip from when I was being threatened with death-by-blood-clot just the night before. I was mad that I didn’t trust my instincts and I was holding back my trembling lips at the frustration of it all. “I knew I shouldn’t have come here!” I kept yelling out to my parents and the air.

I pointedly asked if Dr. Moskowitz had been consulted by the rounding doctor on this plan. The resident assured me that yes, they had been in conversation all morning and she agreed with the plan to start me on steroids and assume that it was radiation recall from the chemo. This had me so confused that I even undermined them and put out a call to Dr. Moskowitz’s office directly, but was assured continually that they had spoken so I inaccurately assumed all were on the same page.

I felt so bullied at that point because despite my best efforts at logic with these doctors it seemed that their decision was made. I knew that even if they sent up someone from pulmonology, it would just be a dog and pony show with the newest department intern just to sate me. I was pissed and exhausted as my parents and I waited for the discharge paperwork and prescriptions. Did I mention I had been fasting for more than 18 hours, no developments were made, and I didn’t receive any care that required inpatient stay?

On the ride home Dr. Moskowitz called my cell phone saying that she had just missed me in the hospital. She had come up to speak with me and was shocked that I was discharged. All of the decisions that happened did not in fact happen with her consent. She was mortified and just as frustrated as I was for what I was dragged through. She was apologetic and admittedly at a loss for words when she heard me explain the inpatient care decisions made for me. The attending doctor had blatantly lied to me that Dr. Moskowitz agreed with the plan to discharge me without ever seeing the pulmonologist that I was there to see.

What else was I to do but to trust the medical team, the people that are supposed to have my best interests in mind? I am not the medical expert and there has to be a certain amount of trust there.

We can’t change what happened. I’m forever grateful to my parents for being there with me through it. I learned a lot from the experience and do believe that I handled it as professionally and logically as possible while standing up for my rights as a patient. Though we need to move forward from this and still find the root of the problem and compose the plan for future of my treatment, my doctor has launched a formal complaint in hopes that this communication break and inappropriate approach is never experienced by another patient.

I have since started a course of 60mg daily of Prednisone to get the inflammation down. This is more steroid than I’ve ever been on, but is necessary to keep me out of danger. It seems to be helping, though it comes with a whole lot of that steroid baggage: bug eyes, lack of sleep, crawling out of my skin with energy despite exhaustion, lack of focus, paranoia and instability. Emotions can take a sharp turn at any moment. The food processor took the brunt of it the other day as I threw that sucker across the kitchen when it wouldn’t stop jamming. I could hardly contain myself from heaving cries at a wedding last night, so moved by the beautiful love displayed everywhere. Every emotion is way intensified.

Right now the plan is to get through what is likely to be a three-week run of steroids while my radiation doctors and a local pulmonologist at Hartford Hospital further analyze what may be happening to my lungs and all of these brains figure out what we need to do here.

I am so thrilled to have found a drug that is holding back and eliminating the lymphoma, but scared as hell that it’s taking my lungs away with it.

As with life’s usual ups and downs this weekend was much better: starlight picnic with friends set to Elton John music by the HSO, dancing the night away under a tent beside the ocean with my husband and wonderful friends to celebrate their marriage, then spending today honoring one of my best friends at her bridal shower in her new home. Having the balance of so much love and happiness around certainly makes the shittniess more easily tolerable. But it’s still pretty shitty sometimes.

“Scared is what you’re feeling. Brave is what you’re doing.” – Emma Donoghue

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.