The top of a mountain

2

On my way home from work tonight, at various times, I let 3 people into traffic ahead of me.  “Gosh I’m a nice person!” I thought to myself.  But really, what I wanted to say to these people driving on the road with me was, “&%$* you!  I have cancer!”  Not so “Hay House” of me, I know.  But quite honestly, there are times when I just want to scream from the top of a mountain (or while I’m fantasizing, perhaps a cliff in Hawaii) that I have cancer, that the world sucks, that it’s not fair, that all I want is to go back to that moment right before I knew that there were 2 lesions in my liver.  To live in that very second of not-a-care-in-the-world (even though I can tell you right now, I thought that I had plenty of cares at the time)– wow!  Would that be amazing.  Completely unrealistic, but amazing.

And perhaps it is the stress of my job that made me want to yell at complete strangers (or perhaps even if I got to watch TV as my job, I would still feel the need to yell at the top of my lungs). You can imagine, I hope, how difficult it is at this point in my life to be a social worker.  To listen to other people’s problems.  It goes against the very grain of who I am to not feel compassion, and yet sometimes, when people are complaining about their jobs (or their bunion surgeries, true story), relationships, or financial woes, I just want to tell them to suck it up.  I know that everybody has real problems, and that everybody is entitled to their problems (I sure wanted to be before cancer).  And yet, I wonder if/how I could change a life if I told somebody who was concerned about the fact that they weren’t totally sure that they liked their daughter-in-law-to-be that I have stage IV cancer, and would literally take a crappy daughter-in-law in lieu of this cancer, because that would mean that I had a child who was getting married.

Of course, lots of the problems that I hear about are definitely really serious– suicidal thoughts, severe alcohol/drug abuse, homelessness, domestic violence, etc.  But there is no way for me to distinguish what’s going to be on the other end of the phone when I pick it up.  Will I get somebody threatening to jump off of a parking garage roof, or will I get somebody upset about not liking the smell of snow? (I couldn’t make this s*** up if I tried). But I still get out of bed and go to work on most days, because I long for that sense of “normalcy,” even if it means tolerating some ingrown toenail stories or some other (what feels like right now) nonsense.

After work this evening, I took a walk through my new neighborhood. I’m working on self-care, including taking time to be alone with my thoughts (as scary as that is), and getting some fresh air and exercise, despite still feeling icky from the side effects to my treatment. I forgot how early the sun sets these days, and how cool it gets at night. But right before it became dark I saw the first red leaves sleeping on a tree and thought, “When did it become fall?” Summer flew by with not much of what I had hoped for, too busy navigating the medical system and wondering, “What if?” I thought about that during my walk; about the precious nature of time, about feeling like months have passed without knowing exactly where they have gone. All that cancer patients want is the luxury of time. I listened to my tunes and gazed at the houses on my new street, thinking about how sweet it was of our next door neighbor to ring the bell today and hand me not only a plate of brownies that she had made, but also an index card attached with their phone number. “We have an open door policy,” she told me– she and her other neighbor friends can walk into each other’s houses and grab a cup of sugar or a beer if they so desire. I’m not sure how I’d feel about walking into the kitchen to see my neighbor rummaging through my fridge, but then again, I’ve never known my neighbors as an adult, so perhaps I would find it endearing! I certainly found her endearing. Perhaps it was because, aside from the brownies and the hug with a “Welcome to the neighborhood!” she was the first person that we’ve met in our new hood so far not to ask me if we had kids. I felt as though I was holding my breath throughout our conversation on my front porch, and when she finally walked back towards her house, I exhaled, feeling relief at not having to give an answer to a question that I absolutely dread. And for the first time today, as I watched her shadow disappear behind a line of trees that we share as neighbors, I didn’t feel like screaming from the top of a mountain or from the safety of my car. But I can’t promise how I’m going to feel tomorrow.

The Unplanned Story

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It has taken me literally weeks to write this blog entry. Every time I felt as though I had somehow tied my words together to make any sense out of what is happening, I would re-read what was sitting in my draft box and sigh, wondering if I was truly conveying what I wanted to say, wondering if my words would be judged, if I would be deemed not strong enough, and feeling like if I published it for the world to see (or at least my friends and family) then what I was saying could actually be true.

My husband commented the other day that it seems that I am only inspired to write when something bad happens, and I agreed. It is a strange piece of me, I suppose, and yet one that has created some of my most inspired posts. And while this one doesn’t feel so inspired, I think that it’s an important story to tell. What I want to share with you now, dear readers, is that my cancer has returned.

The illusion that once you are “cancer-free” for a certain number of years means that you will always be cancer-free is a false one, as I so cruelly learned a few weeks ago. After two months of knowing that there were 2 small (thank g-d) lesions in my liver, but not knowing what they were, I finally found out in late August that the ocular melanoma that I was diagnosed with back on December 15th, 2005, has now spread to my liver. The doctors at Beth Israel were sadly incorrect when they biopsied one of the lesions in July and reported back that it was benign. Our dancing for joy was short-lived, as I saw a liver specialist also at the B.I., and then found my way to the Dana Farber for much more comprehensive and medically and emotionally sound care, where they discovered what was actually going on in my body. (More in future posts regarding the importance of second opinions!).

For whatever reason, if ocular melanoma spreads, then it most likely goes to the liver, which is why for the past almost 8 years, I’ve had bi-annually, and then after about 5 or so years, yearly MRI’s of the liver/abdomen. For all I know, these lesions could have been growing for a while, as they are pretty small and difficult to detect, I’m told. And yet, they’re there.

It’s been an incredibly difficult two months; the not knowing, the trying to fall asleep at night wondering what my life was going to look like, hugging SHL harder than ever, watching other people move forward with their lives while I felt stuck, as if living in some kind of eerie episode of the Twighlight Zone.

There has, oddly, been almost some at least short-term relief in the news. I take that back: There was not a speck of relief in the news, but I suppose the relief came in the form of an answer to a question. I suppose sometimes the not knowing can be worse than the knowing; at least this way, I know what I am up against, and I know what to visualize when I think about kicking this cancer’s ass all the way from here to eternity. (I like to imagine the tumors shriveling up and dying, and then bursting into thin air, winding their way into oblivion, too scared to ever return).

Let’s not sugar coat anything: Liver melanoma is Stage IV, which means that it’s deemed as incurable. So what does “incurable” mean, exactly? When I look at the doctors as they’re giving me the information on treatment options and such, I see in their eyes that they believe that incurable means that they don’t know how long I can or will live with this disease. In fact, they’ve told me that, point-blank. But I know better– Better than the doctors at Dana Farber, yes, and better than this cancer that is now housed inside my body without my permission. Because I know myself. I know who I am, I know that I was put upon this earth for a reason, and that I have not yet fulfilled that reason, and I know that I can manage this as a chronic disease. This doesn’t mean that I’m not terrified. It doesn’t mean that I don’t want to cry and scream and throw things and shake my fist at g-d or the universe or others who seem to have it so easy. In fact, I am self-aware enough to know that I am still in some kind of shock, that someday, maybe even soon, I’m going to crumble. But not today.

Today, I wonder how to make my words count. Today, I wonder what I can do for my mind, body, and soul to send cancer the message that it’s not welcome, that it won’t be tolerated, that it has another thing coming if it thinks that it can take me away from my husband, my family, or my friends. I’d say not in this lifetime, but this lifetime is all that we’ve got.

And nobody has a crystal ball: Nobody knows what’s in store for them on any given day. Nobody knows how long they’re going to live. Nobody wants to think these thoughts because they can be terrifying, and paralyzing, but it’s true. I suppose if we tapped into these thoughts all day long we’d never get out of bed. But the thought of missing out on all of that life stuff that everybody else gets to do, without even thinking about the joy or luck of it all, is too much for me to bear.

So as I open up a whole new chapter for myself, one that I never could have seen coming, and one that I surely didn’t ask for, I wonder why the page is turned to this one. I wonder why the story can’t go as it was “supposed” to go: Right now I would have been about 8 months pregnant (another part of life that people like to whisper, like the word “cancer,” is the word “miscarriage”), moving into our new house, and getting ready to start a chapter that I had dreamed about all of my life. Instead, we are moved into our new 4 bedroom house with the big backyard, with no hint of the pitter-patter of little feet. Echos of our voices that stretch across this great big house, now built for 2. Maybe not always, but for now.

One can wonder why things land the way that they do… The toss of a coin, the drop of a shoe (the other one falling, the one that I had so dreaded, but had put out of my mind in order to live with gusto), the words “You have cancer.” Again. One can wonder, though it doesn’t mean that anybody has an answer. People may think that you’re strong if you don’t ask, “Why me?” but frankly, I think that’s bullshit. We only get one life, and if we’re going to be told that life may be shorter than we were prepared for, I think that we have every right to ask that very important question. It doesn’t mean that there’s an answer, or that there’s ever going to be an answer (clearly, there’s not, which I had gathered long ago after reading every book that Rabbi Kushner has ever written. Comforting and profound, yes. An answer to “why me?” Well, no), and it doesn’t mean that we should get stuck there. But what it does mean, to me, is that I am in the process of trying to figure out how I’m going to not just cope with this new life, but how I’m going to thrive in this new life, and how I’m going to keep life as normal as possible for SHL, who thank g-d keeps me laughing and loves me even despite my wacky genetic coding. And how I’m going to figure out how to live with and process the anger and the fear (which I suspect will linger, and that’s OK), so that I can move through that natural piece of grieving for my life b.c. (before cancer), and move on towards living a kick-ass life (maybe even more kick-ass than ever, no hitting the snooze button on life anymore)– even with cancer.

As my heroine Kris Carr says, “Above all, cancer is a spiritual practice that teaches me about faith and resilience.” And I have a feeling that like it or not, cancer is about to teach me something as well. So now comes accepting that I have a job to do. And as any good employee will tell you, there is preparation that goes into starting a new job. I need to research the goals of the company (my body being the company, and the goals being to stay healthy and kick these little tumors into never-never land for as long as I can, until they come up with new melanoma treatments, which I’m being told thank g-d is happening frequently), highlight my strengths (I’m young, otherwise healthy, have an awesome support system, and am lucky enough to be able to utilize some pretty amazing resources out there. Now knock on wood), ask questions when I don’t understand something (what the $%&* does that mean? is a frequent question in my doctor’s office these days), and invest in myself (I’ve already revamped my diet, jumped in with both feet to a meditation practice, and am incorporating more self-love and less I’m-going-to-forsake-myself-for-my-job into my daily life). And that’s exactly what I intend to do, and more. It’s an unplanned story, yes, but not one that any of us knows the ending to, which is what I feel like saying to anybody who looks at me (ahem, doctors, nurses, and social workers) like they know how this is going to go. They don’t know me. I have cancer, but cancer does not have me.