Cancer sucks on so many levels. Indeed, many liken the Stage IV experience to a roller coaster because of the ridiculous numbers of peaks and valleys with little time in between to catch your breath. And so it was for me a few weeks ago when I found myself hospitalized for the first time since being diagnosed with breast cancer.
I had been feeling really lousy for some months. But if you are from the Northeast or Mid-Atlantic region of the United States, you know how cruel and unforgiving the winter of 2015 had turned out to be. That I felt lousy and unable to really do much I chalked up to the weather. Any confusion or restlessness was the fault of a substantial lack of sunlight. And general crankiness I blamed on being lonely.
But on one particular Monday my ankle, that was sore for a day or two for no reason, had become so sensitive that I could scarcely put any weight on it. And more than any day before, I felt there was something intrinsically wrong with my body. I was nauseous more than I wasn’t and most mornings began with a short stint of dry heaves. Occasionally I was a little dizzy and I didn’t pee much. And that bloody primary tumor in my right breast was still growing. Only a week ago I had attended my monthly oncology appointment and, because the creatinine was a slightly elevated (which it has been for a year by this point) and my potassium ridiculously low, I had received some IV hydration and potassium. But on this particular Monday I called my oncologist in tears and was urged to take a taxi or call an ambulance to the breast center. I didn’t want to take an ambulance away from someone whose life might be on the line. I could not find a taxi, so I took the bus.
The only way that I could describe how I felt was to say that I felt weird and unsettled–just a general feeling of not being quite right. And I was concerned that the sudden and extreme ankle pain, even without swelling or heat, was indicative of a blood clot. After a blood test, I was informed that my creatinine level was “in the nines” and that I would not be going home. I was inpatient bound.
After what seemed like endless tubes of blood that went to the lab, I learned that my creatinine was so high that at first glance the attending physician thought I would need dialysis; I had acute kidney failure. My plump and happy kidneys had turned into shriveled raisins and I was severely dehydrated. That explained a lot of the symptoms I had been experiencing, not the least of which was not peeing very much. Worse still, a lung scan revealed the presence of two pulmonary emboli. Over achiever.
My job from there on out was to cooperate fully with my physicians and do what I was told for however long I was told to do it. It did not matter that I desperately wanted to be no place else but home.
Mount Sinai is a teaching hospital and what that meant for me, of course, was a never-ending flow of doctors, residents, interns, and fellows that started at 6:00 am and continued throughout the day. And, as anyone who has spent time in a hospital will know, it was noisy, people spoke at the top of their lungs at 2:00 am, I was nudged awake for blood tests in the wee hours while lying under fluorescent lights that inevitably were left on out of habit when whomever did what they did to me left the room. Machines didn’t just take your vitals, they had to turn on with little musical announcements, beeps, and bells. The IV pumps would beep. Was it plugged in? Did one infusion or the other stop? With three pumps going it was a never ending cacophony of warning signals of one type or another. You know what they say, don’t go to the hospital to get a rest.
And the food sucked. I think the chef’s previous job was supervising the food that prisoners get on Riker’s Island. You know when the movie prisoner gets some kind of mold covered mystery shit patty that, even if not eaten, makes them vomit? Yeah, it was pretty bad.
For the first four days I was on clear liquids. A dietitian came to my room and said that she knew that just having clear liquids was a challenge, but “even then you do have the ability to make some choices to enhance your dining experience.” I was then told that in addition to clear chicken broth, I could also choose beef broth or vegetable broth. Jello choices were cherry and raspberry. When I was finally allowed solid foods, I contemplated asking for clear liquids again. The food was so bad that I didn’t even post a picture to Facebook with some sarcastic caption. It was that bad. It always smelled like feet, tasted worse, and nothing–absolutely nothing–was fresh.
Oh, and while in the hospital I caught a virus that took all but everything out of me. Every thing that came out my lungs or head was green and gross. Every two hours or so I retreated to the bathroom and spent 30 minutes doing what I called going green and tried to clear my lungs and sinuses in an attempt to breath normally for ten minutes. I begged for cough syrup, a culture, anything. If it didn’t have to do with kidneys or lungs no one seemed to give a shit and I never received anything to help me with the symptoms. And then I finally had a meltdown. I had it with the IVs, the round-the-clock blood draws, the endless noise from machines that take your blood pressure (no one knows how to take a manual BP anymore?), coughing up my lungs and suffocating from stuffed sinuses. When I talked I sounded like a frog. I wanted out for I felt worse than I did when I entered the place a full week before. But waiting for Coumadin to reach a therapeutic level increased my stay one day at a time. I was going to go home on Friday, then Saturday, then Sunday, then Monday, then Tuesday. Finally I was released on Monday evening and was spared another day. (As I write this, three weeks later, only now do I feel a spark of energy and am able to walk across the street to a park bench and keep down a meal.)
It all just goes to show how vulnerable I am now that I’m carrying around the cancer monkey on my back. I was not aware that blood clots are a concern with Stage IV cancer, so now I’m on Coumadin for the long haul. I drink constantly: water, lemonade, juice, milk. I even wake in the middle of the night for a glass of ginger ale to soothe my still sore throat and add to the hydration totals. Jello is my go-to for a snack. In the course of just a few weeks I had shed 28 pounds.
Until now it was all about pain from bone metastasis. But a step away from serious kidney damage and blood clots that could have fatally dislodged? Not to mention that Floyd not only hurts but bleeds and leaks to varying degrees from day to day. So in addition to facing a pretty precarious health crisis, I will say goodbye to aromatase inhibitors and anti-estrogens and begin oral chemotherapy in an attempt to target Floyd and (hopefully) kill the bastard. I begin Xeloda on April 20. Until now, all of the medications that I have taken have been effective for six to eight months. My fingers are crossed that Xeloda remains effective much longer.
As I sat in the emergency department on the night that I was admitted to the hospital, my overwhelming fear was one of entering a phase of progressive deterioration. Was this the moment where my health would become ever compromised and I would start to divide my time between home and hospital? Was this the proverbial beginning of my end?
Thankfully, the answer seems to be no. My scans are excellent: no progression has been detected apart from Floyd, both sites that received radiation have responded well. There is still a lot of pain in my lower back and groin, but I take narcotics on schedule to address that. I can’t escape the fact my immune system is wonky, I am still easily fatigued, and I need to be aware of things that heretofore I never had to think about in order to attain and then maintain good overall health.
If you are living with metastatic breast cancer, then you know it’s a full time job. You need to learn about your disease and cancer writ large, master your medications, understand your treatments, and anticipate challenges. You need to become your own advocate and to the best of your ability keep the myriad appointments for scans, follow ups, and monthly treatments. There are moments of triumph, times when you lose your footing and slip backward, times when you are hopeful, and other times in which you just don’t care. But over time you realize that the fear you try to smother never really goes away; and I venture to think that this is probably varies from person to person. The fear, for me, is not one of inevitable death, for we all die. My fear is that of profound vulnerability.
My first exposure to being vulnerable came with the news that I had breast cancer. Intractable pain made me feel fragile. Finally acknowledging that I had to leave my career was, I thought, the worst vulnerability of all. The loneliness and isolation reveals yet another layer of fragility. Having to depend on people and feeling resentment from some that you need their assistance. But this experience taught me there are even deeper levels of vulnerability that leave one exposed and in real day-to-day danger. And I know that as time passes I will discover even more.
I never liked roller coasters. And I really hate the one on which I’m stuck until the ride is really and truly over.
The Sarcastic Boob 
Past Tense
The paperwork is in. Fifty pages compiled by four people and faxed to two insurance companies. Disability. I didn’t want to do it. Indeed, for two years I fought hard to crawl my way back to who I was.
I can hardly function in the morning. I wake up at 5:00 am to take pain my medication, then go back to bed as it works its magic. When I walk up the bloody hill to Broadway, I can feel the hole in my sacrum. My right hip burns, making walking really cumbersome at times. I have pain in my groin that makes sitting, getting up, and walking very difficult and painful. Sometimes one or more symptoms take a vacation and I take advantage of that day, but after functioning for one day, I am usually down for the next two. I need a cane most days and I feel very self-conscious of it. When I would return to the office, I walked slow and after a few trips to the stacks sometimes I could hardly walk. I often closed the door and just cried. Over the course of 27 months, there was only one week where I worked five consecutive days. Defeated.
I tried working from home one or two days a week, but the nature of my position made that very difficult. I could no longer teach–which truly broke my heart. Plus, if pain was bad on a particular day, I was unable to function. My colleagues were upset. I anticipated that, though not the indifference I faced when I tried to transition back into the office in September. The fact was, I was no longer needed. It’s funny how the first 12 months of a cancer diagnosis, some people are really supportive, even those on the margins. If you’re still alive after that point, you become the background noise of life. They may still care. but concern is replaced by anger. One colleague basically told me that I had to earn back her respect. I was floored, though I didn’t show it. I understood the frustration of being down one staff member, but I had to earn back her respect? I didn’t steal anything, undermine a colleague, or sideswipe anyone to advance. Because of what cancer did to me, I had to earn back her respect. I was really hurt. And I had just bought a new suit.
The reality in all of this is that cancer isn’t killing me–my scans are relatively stable. I have no organ progression or failure. Instead it has begun to disable me through pain. And the first casualty? My professional life. A life that has, for twenty years, been 90% of my personal identity. Who I am.
Meanwhile, radiation stabilized the sacrum and L4, with some lasting damage that is painful. But at least scans are stable on the whole. In August the primary tumor in my breast–that had shrunk from 4 cm to just under 1 cm–began to grow again. But this time it expressed itself as a lump that was protruding instead of growing inward. As the lump grew over five months it changed colors. As I write this, the tumor fits into the palm of my hand and turned from a light pink to a dark red/purple. The skin is stretched so tight, it looks as if it will burst.
My oncologist and me had observed this growth for four months. Finally a new form of treatment was chosen: Faslodex. It looks as if things may have improved since the lump no longer hurts, but it has affected the pain level. Not as bad as Letrozole (the joint killer). Instead it is a low-level systemic pain that exacerbates the lumbar/sacral pain.
After the New Year, I wrote to inform my supervisor and closest colleague that I would have to go on disability. It was very difficult, but I began to look at this as an opportunity to move in a different direction. Spend more time with advocacy and do some serious writing. While all of this is true, the optimistic view to a new future was cover for the real intense grief that I was trying to deny.
Yesterday I met with the oncologist and a social worker to talk about the final paperwork before it was faxed. The social worker asked me about my work. “What did you do?” And I proudly told her that “I was the University Archivist at Big University.” And then I started to sob.
Was. I was.
I worked all of my life for the opportunity that I secured ten years ago. I went to college about 8 years after my friends had gone. I always felt like I was behind, and to that end I worked twice as hard to succeed. I worked two and three jobs to pay for tuition and still maintained a 3.8 GPA. Between ability and luck, I secured positions at influential institutions and worked with some of the most talented exhibit designers and archivists in the business. Eventually I moved to New York and secured my dream job. After two years I was promoted and worked 50-60 hours a week. The repository was loaded with talent, rare books, papers, and records. But it was stuck in the 1960s. My mandate was to bring it into the 21st century. Along with a great staff, I did it. I wasn’t liked by some because of it, but I had been hired to do a job and I did it.
Twenty years of experience as a professional archivist and educator. A job for which I was thankful and privileged to have. A job where I made a lasting difference.
My career. Gone. I was.
Sure, I’ll survive. If all goes well, I have disability insurance that will provide well for me until retirement age. But I’ll have to move back to the Philadelphia area since it is way cheaper than New York City. I’ll keep my physicians, so I’ll travel to NYC every month. I’ll become more involved in advocacy, do some serious writing, and travel. However, I imagine there will always be a void that will never be filled.
I was. Was.