Flayed Alive

I used to love to enthrall my history students with tales of the Assyrians. They would flay their victims while they were alive and parade them in cages to the next village on their map of conquest in order to frighten their adversaries into submission. It’s horrible, of course, but so many thousands of years removed that to speak of it in dramatic and compelling ways added to the suspense and engaged my always skeptical history audience.

My career was always the most important thing to me. From the days of a child playing “business woman” with my Barbie case, to actually working as a professional I enjoyed every moment–even the maddening ones. The schedule, structure, and promise of new projects made me happy as a clam. My enthusiasm was often interpreted by the old guard as aggressive and adversarial, but that really never mattered to me. If I was given a mandate I made it so. And I made it well.

When I started my position as Curator of Manuscripts and University Archivist at Columbia University’s Rare Book & Manuscript Library in October of 2006, I was taken back at first by the scale of the projects that were ahead of me. But I had the unique and enviable position of remaking the operations of one of the nations largest manuscript repositories and bringing it into the 21st century. Along with a team of competent professionals I was able to do this and it remained perhaps the happiest eight years of my life (counting the two previous years as University Archivist). Ten years of promise and downright fun. Hard and demanding work that brought about the best and the worst in me at times. But I did it.

I had ten years worth of plans and projects floating about in my head when cancer struck in 2012. At first it seemed like I would be able to manage it, but pain from bone tumors and the malaise that came from medications affected everything about me. My memory was shot. Sometimes the drugs for the back pain made me feel like I had been smoking pot during school lunch period and decisions were hard to make. Then I had so much pain that I needed to take time away. Lots of time. I fought so hard for a year to come back. My vindictive boss was trying to dump me, but I persevered in part because I knew if I were to go on disability, I had one more year until my birthday to do it. Perhaps others didn’t see it, but it felt as if I was clawing up a mountain with my fingertips. I cried, worked in pain, and tried as hard as a could. However, in December of 2014 I realized that I couldn’t do it anymore. And I accessed the generous disability insurance from my employer (and working on the government end, too).

The loss of a 25 year career in special collections and teaching has torn at my very soul. I thought I could be alright with it and move along, find other things to keep me busy, but it hasn’t been that easy. I miss the influence I had. I mourn the outlet for creative energies that are always flowing in my brain. I miss the schedule, the travel, and the satisfaction of a job well done. Oh, and how I miss my students! In a very real sense I lost my sense of self.

One of my friends who is in a similar position told me once that what frustrates her is not being needed. She could sing or sleep all day and no one would notice or care. And that is how I feel. Useless. Like the bag of clothes pins I have and no line on which to pin them.

Friends have left as well. There seems to be a two year limit on friendship when you have a chronic condition like this. I don’t know why, but with former colleagues I’m sure they don’t know what to say, since the biggest topic we talked about was work related. But, believe me, I wouldn’t have spent my time with them had I not thought they were great people to begin with. I’d love to hear stories about the workplace. I understand in a real way, but it would be a way to feel connected again.

I’ve seen the eye rolls when I tell people I’m not the person I used to be. Well, how would they know. I’ve lost 50 pounds and I look completely normal. I look great! But the fact is that I am not. Fuck you, man. I lost weight by not eating, no planned intent. And I’m jealous of these “lifers” who can work, raise their kids, jump back and forth shopping and whatever. When is it my turn to feel okay enough to do stuff like this? Yet, I know it’s not easy for them either. Whether it’s numbness of their chest walls, medication side effects, etc., they don’t have it easy. It just looks that way. In point of fact, we’re on the same lousy trajectory, just in different ways.

Flayed

Assyrians flaying prisoners alive.

And disability really sucks. When it’s super hot I have to stay in because of my hydration issues–can’t seem to stay hydrated since I was diagnosed with renal insufficiency on top of this fucking cancer. When I have a lot of pain in my back I can’t really go anywhere, so it’s in the apartment with my feline buddies. I read, color, write, knit, and watch movies, but my brain feels like mush and without real purpose I feel defeated.

I’d love to spend every day in a museum, but I’m often just too tired or my stamina is just low. I think the time I felt most defeated was when I was hit by vomiting the water I had drunk just minutes before in front of a grade school when kids were coming to class. That sucked. Oh, and now I’m anemic. Fucking anemic. Another pill. Another reason for malaise and feeling less than normal. Oy veh. Nothing is like it was.

Disability has left me feeling skinned alive. All of my professional talents and desires have been stripped from my very person; from my very soul. It’s horrifying. And it’s gotten to the point that I have to seek out help to try and come to terms with this overwhelming loss. For it is a profound loss, a death if you will. And I don’t know if I can ever accept that this productive, rich, and enjoyable part of my life that I treasured so much is gone forever.

I envy anyone who is on disability and enjoying it. I don’t think I ever shall, not when I know that there was so much more I could have achieved and contributed. Not when I’ve been flayed professionally for all to see.

Posted in My Stage IV Life | Tagged , , , , , , , , , , , , , , , , , , , | 19 Comments

Two Kidneys, Two Clots, and a Tumor Called Floyd

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.

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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.

Stand Out  USE THIS ONE

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.

 

Posted in Advocacy, My Stage IV Life, Social Commentary, Stage IV Musings, Uncategorized | Tagged , , , , , , , , , , , , , , | 45 Comments

For People Living With Metastatic Breast Cancer: Change is Coming

Originally posted on MBCNbuzz:

Marc Hurlbert, Alliance project leader; Karen Durham, patient advocate, DeAngelo Williams, Carolina Panthers; Shirley Mertz, MBCN Marc Hurlbert, Alliance project leader; Karen Durham, patient advocate, DeAngelo Williams, Carolina Panthers; Shirley Mertz, MBCN

By Katherine O’Brien, MBCN Secretary

This past Monday, I joined MBCN board members Shirley Mertz and Ginny Knackmuhs in New York City for a press conference. On October 13–National Metastatic Breast Cancer Awareness Day– the MBC Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer.

Over the past the year, the Alliance, which represents 29 cancer organization, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As I listened to the presentations, I was reminded of something John F. Kennedy said about the early days of his presidency: “When we got into office, the thing that surprised me most was to find that things were just as bad as we’d been saying they are.”

Key findings…

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October 13

Capture2

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STFU

So I’ve been attempting to write post after post after post, inevitably trashing them all. I tried one on depression, one on anxiety, one on pink. Whatever I tried it just never worked. And I have to say that through it all I learned one thing: I’m sick of this shit.

I thought it was writer’s block, but it wasn’t. I realized that I was sick of writing about my breast cancer. The crises–at least the two I experienced thus far–are over. I’ve bitched and praised doctors. I’m certainly not surprised anymore. I’m smack in the middle of chronic maintenance. And how boring is that.

It’s cancer. I like boring. But what can I say that I haven’t said a hundred times? My latest scans are stable, except that my primary tumor is growing again. But a post about my primary tumor is boring because I don’t know why that–and nothing else–is growing. I’m not experiencing any awful side effects of my medications. In fact, I’ve cut back and take Oxycontin only once a day, and I’d like to bring down the dose of the Lyrica. Exemestane and me are still buddies for the time being. See? All good, but boring.

Then October. I don’t give a shit. Well, until a woman with hair was told not to attend a segment of the TODAY show because she had hair. That got my pantyhose in a bunch and the producers at TODAY were schooled with some serious social media organization. Now that’s been resolved. MBC seems to be making the rounds of the talk shows, and I think I’ve played one of many parts in changing that conversation. (Mind you, I say “one of many,” because so many were digging that path long before I came in with my shovel.)

Last week, after a miserable two weeks with some malicious and tenacious virus that had me on my ass, I developed crippling anxiety. I didn’t want to leave my apartment–and I didn’t. I cried, I felt helpless and alone, and I didn’t move. I was afraid of something. I didn’t want to bug my friends and whine. Then I asked one of my friends if she would pick up some milk and yogurt for me. When she arrived she read me the riot act. “Get the hell out of this apartment and get back to work!” She even bought me a small milk and one yogurt so it wouldn’t last and I’d have to go out.

I was grateful. She was right. How did I go from strong woman to whiney bitch? I was terrified to leave my apartment. “Stop reading those damned cancer blogs and get the hell out of here!”

I spoke to two other friends over the weekend and then the fog started to clear: I was caught in a cancer loop. When some Komen shill on Beyond the Pink Moon (Facebook) started to talk about “cure rates” in defense of Komen’s efforts, I knew I had to get out of this loop. For the cancer loop was becoming more toxic than the cancer itself. “Cure rates?” Fuck you! (Sure, bring on the hate mail. It’s still fuck you.)

I pulled out of every cancer group on Facebook. I even pulled out of the Knitting group; those moderators were nuttier than fruitcakes. Who needed to join a group with a bunch of shrews who deleted your post because you were “off topic” (whatever the fuck that meant). A bunch of dummies drunk on the nectar of being Facebook group moderators. All of this instantly stopped the noise. There is reason in silence; there is no reason in noise.

internetNoise like people who post to a FB group afraid that their port has shifted because of a bulge in their neck and then ask, “What do you think I should do?” What the fuck do we know? Go to the fucking emergency room! What the fuck? Or the “surround yourself with positive people and your positive thoughts will make you happy and then, in turn, make you well” people. Seriously? Go fuck yourself and the horse you rode in on. And all the goddamned ribbons and pink and bitching and moaning and whining (of which I was one). And all the noise about cannabis curing cancer. Let me tell you something, if that were true I should have never even developed cancer, if you get my meaning.

There is a time and place when we seek answers, camaraderie, and solace. But even in Cancertown there is a time where we stick a Poise pad on our panties, pull ’em way up, and move along. The cancer loop sparked and then fed my anxiety. I tried to find answers among the many posts that I scrolled through daily. Instead, I was finding nothing but a bunch of other people looking for answers where there were none. No one there was going to know why my tumor was growing and nothing else wasn’t–that’s why I have an oncologist who went to medical school, fer crissakes. What a dumbass!

On Monday I returned to work and I was pretty fragile. I had anxiety all day, but after dinner I was feeling considerably better. I was looking forward to Tuesday. I woke up, got my affairs in order, suited up, and headed out for the office.  I felt I had purpose again. I wasn’t going to go away quietly. And, best of all, I was out of that poisonous loop. No noise.

Thing is, this noise wasn’t replaced by “happy happy joy joy” noise. It was replaced with my life. Not that it’s exciting, by any stretch of the imagination, but it wasn’t fucking cancer 24/7.

Cancer is the one thing that we can’t escape. It’s in our bodies or in our minds all of the time. If you’re a “survivor,” you don’t know that your safe. And if you have MBC, you never know what the next scan will show. We have a lot of ways to deal with that: we have our friends, we have blogs and Facebook groups that can give us information and/or support, and then we have the choice to turn it off. Each of these has a time and place, and the road isn’t always smooth by any means. But if we start to dig a hole for ourselves with only one choice, we’re going to die down there. Alone and miserable. And isn’t having cancer bad enough?

 

 

 

 

 

Posted in My Stage IV Life, Social Commentary, Stage IV Musings | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 61 Comments

Open Letter to Joan Lunden

I want to thank Joan Lunden and the people of TODAY of putting the spotlight, however brief, on metastatic breast cancer–the one that no one talks about.  A link to the TODAY spot is below.

http://www.joanlunden.com/category/35-breast-cancer/item/453-today-show-pinkpower-day-3

Dear Ms. Lunden,

You are an inspiration to many women and, rightfully or not, by virtue that you developed this disease you shine a spotlight on women with breast cancer. To support one of your upcoming reports on the TODAY show, a friend was contacted to be on the show to talk about metastatic breast cancer. Well, she thought she was, but what TODAY show producers wanted, it turns out, was a sea of exclusively bald women for a backdrop. When they learned she had hair, they told her not to show up.

CaptureNot all women lose their hair as a result of treatments. Many agents do not cause hair loss. I am 54, I was diagnosed with metastatic breast cancer right away, and I have had neither surgery nor chemotherapy (though I may as my disease advances). I will die of this disease. Indeed, every single woman who has had breast cancer could go on to develop metastatic disease. A full one third do — some a full twenty years after they have successfully completed treatment — and yet only 2-3% of the funds raised go to research on metastatic disease. There is no cure.

Pink is just a color, it is not a cure for breast cancer. Please honor us and swim against the tide that will always pink wash this disease. Please call attention to metastatic disease–it takes 40,000 women a year in the USA alone — and honestly portray the variety of women that breast cancer touches. It is time that we educate the public, not pander to producers who want women with breast cancer to fit a certain look while they continue to die. I hope that you agree.

I wish you good health.

Scorchy Barrington

Posted in Advocacy, Breast Cancer PSAs, Breastploitation, My Stage IV Life | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , | 39 Comments

Remission

The Catch-22 of having metastatic breast cancer is this: when you’re caught in a period of crisis all you hope for is that your scans will improve, the pain will lessen or go away, your energy will return, and that you will at the very least be stable: i.e., no progression.  But the rub is that when you are not in a period of crisis, your scans are stable or better, you have energy, and you’re not in pain, you wonder when the next period of crisis will be and if it will be the last.

One thing I hadn’t considered, however, is that my oncologist would tell me that if my PET/CT isn’t lighting up she will likely pronounce me in remission. I had always attached remission to something like leukemia, only because that is the context in which I had heard the term. Someone is gravely ill, experiences hellish treatment, and then the cancer is gone–remission.  I never thought about that for myself. And, frankly, no one ever mentioned it–doctors, advocates, fellow patients.

All things considered, I suppose it is likely since tumors I had in L4 and the sacrum have responded really well to radiation to where there is little to no activity in these areas. The lung lesions–which were tiny to begin with–were gone within a few months of taking Tamoxifen. Tumor markers are down considerably. I still have my primary breast tumor that is smaller and with less uptake of the radioactive tracer (my physician talked about it being metabolically stable).  Of course, it’s only remission if I continue monthly visits with my oncologist, take Exemestane daily, Xgeva monthly, and have quarterly shorts of Lupron and scans to evaluate the efficacy of it all.

When I look back over the last 20 months or so, the entire period was one of crisis.  I can divide it between the experiences of Tumor I and Tumor II. All in all I had lived through twenty months–give or take–of craptastic glory. Other folks may have had it much worse or much better, but the only thing that mattered at that time was my own private Idaho. All of it was something that I never experienced before and it took a long, long time to heal. Gosh, I still needed help getting meds and running short errands up until about three weeks ago.

Two weeks ago I was able to work for four full days in a row; I had not been able to do that since April 2013. After the workday I could do little more than walk home, prepare dinner for me and the felines, and lounge. But I had worked  full days. I cannot begin to tell you the emotions of satisfaction, pride, and self-worth that I felt when that week ended. A week ago Sunday I joined my friends for brunch to watch the World Cup. As I left the house I was struck by the fact that I had no pain and walked to the subway entrance like I had never been ill. With little effort I descended the stairs and then caught myself smiling as I grabbed a seat and traveled in the subway to socialize for the the first time in a year. I walked the two flights out of the subway at 23rd street with ease and smiled as I walked to 22nd and down to 6th. I savored every step I took. Each one was a personal victory. Brunch was spectacular! I so enjoy the company of my friends Tammy, Lori, Mike, and Joanne. We talked and laughed and cheered with the rest of the restaurant as the game progressed and Netherlands–our team of choice–won the game. I cherished every moment, at one point just sitting back and watching my friends talk and laugh. Would that I could have put but some of that energy into a jar to save it. I savored every step home and after I arrived, I slept for four hours.

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But you know, as much as I embrace the present state of affairs and every moment, I am also aware very aware that I am walking on an ice sheet. To say that I feel considerably better seems like an understatement, but I continue to navigate painful episodes. Once I stand it takes about four steps for me to walk without effort.  I still tire easily and this last round of radiation left some residual damage. Some of the nerves that are associated with my bladder have been damaged. And there is also other associated nerve damage that results in a sensation of both numbness and burning pain in my right buttock. That last symptom immediately had my pain specialist thinking shingles, but that is not the case. It is believed that the nerves will likely regenerate, but only time will tell.

When I first started blogging, I recall thinking about what was happening to me and at one point I said to myself “I am dying.” I knew I wasn’t in a critical state of organ failure or anything like that so it wasn’t like the lights were about to go out. Rather, it was the realization that I had been rather newly diagnosed with metastasis and had no clue what was going to happen as time moved forward. All I had was a diagnosis and a chart showing the mean survival rates of women with metastatic breast cancer. Fast forward 17 months and the load on my shoulders doesn’t feel quite so heavy and my oncologist is using a word like “remission,” but I’m not off the ice just yet.

My therapy is working exceptionally well, but were I to stop the routine I would eventually be on some pretty thin ice. Indeed, for all I know the cells in my primary tumor could decide it’s time to party and my present therapy would no longer be effective. It could change characteristics and become aggressive and fast growing. The ice beneath my feet could become so thin that I break through and succumb to the disease.

We never know what life is going to throw at us. The only way for me to deal with this moving forward is to let the physicians worry about the disease. For me, I want to savor the moments of real value to me: time with friends, my mother, my sister, and my feline friends. I need to be thankful that I can resume my career, for there were days when I wondered if I would ever be able to return to work again. I want to replace the palpable fear with which I lived every day for months with meditation and intellectual fulfillment. And I want to refine and hone my knitting skills for the simple reason that it makes me happy.

I don’t know how long this remission will last, but I intend to live a life of real joy, compassion, and personal fulfillment while it does. Within that weird Catch-22 world of metastatic breast cancer, I’m carving out a space for myself. It’s going to be a really cool happy place. And I am going to share it with you.

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Released from Prison

Where the hell have I been these past few months? Well, ever since my last episode with radiation of a painful bone tumor in my sacrum, I seem to have misplaced my voice. It could likely be lost among my yarn stash, but if only were it that simple. For not only have I misplaced my voice, but I am afraid to venture out into the world. Instead, I prefer to stay inside my little nest. On some level I must think that if I just stay here everything will stay like it is and I won’t hurt anymore. Hey, it’s not like I don’t have cause.

I’ve been in pain since September 2012, the cause of this direct and indirect pain has been the bone lesions in L4 and my sacrum. Last summer the crisis was all about L4: narcotics, bowel impaction, nerve ablation, radiation. The Letrozole I was taking from May through December caused such fatigue and joint pain. With it I had no quality of life and it made working next to impossible. I finally stopped it in December and though it took a few weeks, on January 27 I woke up with energy. Real energy! FINALLY! I felt like myself again. Exemestane was easier on my body and I was hopeful for the future.  And then, two weeks later, BAM! The lesion in my sacrum placed me flat on my back. I had only been back at the office for two days. TWO DAYS!

From lessons learned last summer, the process of diagnosis and treatment was faster and I was down for about seven weeks–as opposed to 15.  Radiation didn’t freak me out like it did last year and the nerve ablation was a piece of cake. I experienced some brief depression at the end, just as before. But as excited as I was to return to the office I found–and continue to find–it very hard to move out into the world.

To be sure, I feel wonderful. I am able to walk (in moderation)! In some sense, I feel almost as good as I did before I was diagnosed. I stroll along the streets with a real smile on my face (and in the beginning walked so much that I pulled a groin muscle, but I digress). But apart from my walking success, I feel as if I am sitting on the edge of the chair, just ready to rise up, but all I can do is stay in place. And because I feel as if I’m being tossed around in a dryer at the moment, this might be the most incoherent post I’ve written thus far.

For one thing I have an overwhelming feeling of guilt. So many women with Stage IV cancer are in more peril than I.Young mothers in precarious health. Men and women newly diagnosed. Yet here I am feeling wonderful. How can I have any right to feel so great when so many are still hurting, suffering, and seeing that expiration date speeding toward them at lightening speed? Well, none of this is in my control, of course, and I am not responsible for other people’s lives. However, it is not until you have cancer that your capacity to empathize gets thrown into overdrive. When you are well you feel the pain of others. When you feel your own pain, you want to help others feel better. At least that is how it is with me.

CaptureFor another, I have been living in the “Scorchy Cocoon” for 18 months. That is 18 months of physical pain and emotional distress. Although I was well read and remained current with news and life, it really was Cancer 24/7: doctor’s visits, scans, tests, shots, and treatments. I felt pain all of the time. Every week I had something medical to do. Facebook became my outlet for sanity and keeping up with my friends and family because I couldn’t really travel anywhere–even in my neighborhood. I haven’t been that self-absorbed since I was thirteen. It was, in a very real sense, a kind of prison.

And now that I have been released from that prison and I don’t quite know what to do with myself.

My Job. Folks have been fine without me. I am so proud of my staff as they kept things moving so well. My previous boss had become vindictive and petty and, I believe, scared of my disease. I was afraid I would lose my job (though in academia you could walk naked through campus holding the standard to the 13th Roman Legion and still be employed). But after he left, senior management made it clear that I was an asset to the organization and they wanted me well and in place. My organization has been so supportive and I am grateful beyond measure. But after such a long break, I just naturally question my knowledge and expertise. I have disappeared from annual and local meetings. What is my worth? Do my colleagues feel that I have worth? Do my colleagues want what I have to offer? Indeed, do I even have anything to offer anymore? 

Social Life. I want to be with my friends and enjoy the city. But I am cautious. I cannot plan for weeks in advance for I have no idea if I will be well on that date. Instead I live day to day–which is the hardest thing I have ever done. I can make plans, but my friends must understand that I may have to cancel at the last minute. And if I do that I feel guilty and weak. To date, my social life has consisted of the occasional dinner and logging into Facebook. Sex in the City indeed.

Cancer. I am a master at compartmentalization. With all of the baggage of life, I think I over compartmentalize. Indeed, it wasn’t until I began living with cancer that I realized I had a heightened ability to cloak those compartments in complete and total denial. Not just denial, but a veritable black hole of nothingness. I mean think about it: my entire diagnosis is a story of denial.  Today, despite my past ignorance, I am in a good place: the two bone tumors that existed responded very well to radiation; scans are stable and improving; my pain is under control with the occasional flare. On paper, at least, I can live again.

One day I rose with my alarm, showered, dressed, and then just sat on a chair in my living room. I was paralyzed. I sat there for about an hour. I wasn’t in panic. Indeed, I sat there thinking of little more than the weather. And then simply decided I would not go in to the office. I undressed and spent the day as I had for the previous 18 months: in my PJs with cats. Once again I felt safe and secure.

But at the the same time I felt a tremendous sense of remorse and confusion. What the hell was I doing? I want to work. I love what I do. Why would I jeopardize not only my career but my entire life? I am no longer in prison, so why is it so hard to live?

After seeking some counsel, I decided that intellectual engagement may well be the thing that dissolves my fear of leaving my cocoon. That is to say that I need to immerse myself in my work once again and rediscover the real joy I feel in doing it. I went to the office yesterday, as a matter of fact, and I do think that this is the thing that will work for me.

As painful and confusing as my 18 month odyssey was, it was also a time of odd comfort. When I was under the weather, so to speak, friends rallied around me. They told me how much I was loved and how special I am to them. Friends and family really wanted to know about me. Gifts, favors, and treats arrived with love. I surrounded myself with soft blankets and comforting food and drink.

However, as I improved, many of those things naturally fell to the wayside with the expectation that it was now time to move on with my life. But after such a long time in crisis, I am now left raw and vulnerable. I need to relearn my limits, build my confidence, and live with some modicum of comfort with my disease. This transition from intense illness to wellness is a potentially fragile time for some of us–and we may not even be aware of it until it is upon us.

Intellectual engagement may be my path to easing the uncertainty of my future. Only time will tell. But I cannot possibly be the only person to experience this paralyzing fear of wellness. I just can’t be.

Physicians are focused on their specialty, fair enough, but they might do well to consider the emotional state of their patients as they transition from acute crisis to wellness (as well as wellness to illness). It may be a time of jubilation and excitement. But those feelings are expected to some degree, are they not? I know I told everyone how excited I was to return to my life. And I was. But under it all I was afraid and, even more so, embarrassed to admit that to anyone–even to myself.

I am confident that I will emerge from this mentally healthy and engaged. But like most things I have learned as a result of this cancer experience, transitioning from protracted illness to wellness is a delicate shift. And I don’t think it is on anyone’s radar. When faced with a challenge like this we need to be kind to ourselves first and foremost. Listen to that inner force–if it doesn’t feel right, then it isn’t. Our physicians need to be aware of this as well and ask their patients about how they feel about this transition and if they need help moving through it. Otherwise we may well find ourselves moving from one prison to another. Not only will that continue to cause mental distress, but that will not aid our physical condition.

No one deserves to live in a prison of uncertainty and fear. Least of all anyone who has been hit with cancer, regardless of type or stage. Ain’t nobody got time for that!

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