Apples

When I divulged my diagnosis to other people, their eyes bugged out and their voices filled with disbelief.  'You're too young,' they replied. I agreed with a simple nod but wanted to blurt out, 'No one is too young for cancer. I'm not an anomaly. Get over it. It could happen to you, too.' In my mind I silently defended the brutal reality that the person to whom I was speaking was no more impervious to death than I was; he or she just had the luxury of not having to think about it.

~ Kairol Rosenthal, "Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's"

*   *   *

A few weeks ago, I watched a friend of mine wash an apple. This friend, who I will call, "Becky," was preparing some fruit for a few families who were hanging by her pool for the afternoon. I don't know why that apple caught my attention, but it did. I was completely mesmerized, first by the simple fact that Becky washed the apple like I used to wash an apple. She put it under the tap, turned up the water handle for a split second, then shook off the excess drops before slicing it into pieces.

I don't remember anything that Becky and I talked about as we stood by her sink after she rinsed that apple. All of the sudden, my mind started racing about so many other things. Mostly, I started to think about how everything had changed.

I thought about it several times that afternoon, as I pitched wiffle balls to kids from the pool, and as I watched Annabel learn to jump in the water. Everything changed, I repeated in my head, trying to get comfortable with the thought that was stuck in my mind like a bad radio ad (1-800-54-GIANT?).

When I got home, I pulled out a book that my therapy lady had given me. It was called, "Everything Changes," so obviously I felt it was fitting for my swirling thoughts. I had never more than skimmed the book, still too scared to know much of anything about cancer beyond what I am forced to know. But all of the sudden, my curiosity trumped my fear. I read the first part. When I came across the quote copied above, a lot of disjointed pieces in my head started to line up. 

Yes, a lot of things have changed since cancer entered my life. For one small but representative example, I wash apples differently now than I used to. I use a brush and I scrub them really well, for 15 seconds or so. I even wash in the little crevass where the stem is. While I scrub, I'm often wondering about pesticides and questioning whether some sort of chemical in something that I ate gave me cancer, or worse, could give it to me again, or worst of all, could cause the disease in my children. But there are no answers on that icky path. Which is why part of me misses the days of the one-second splash on the apple. I miss "the luxury of not having to think about it." 

Yep, I know where Kairol Rosenthal is coming from because a few times in the last two years, I've felt that way -- like other people don't understand; like they have a luxury that I will never have again. But for the most part, I don't feel that way and never really have.   

With time, I have come to believe that we aren't separated in the way that Ms. Rosenthal suggests that we are. There aren't two groups -- one with a luxury of not thinking about death and one without it. Sure, I wash my apples differently now and think about pretty much everything in a whole new context, but so many people that I care about have experienced something that has caused everything to change. In fact, many of those people have had everything change in ways far more severe than mine did. And all the people who haven't had their lives change like that yet? Well, one day they probably will. 

In a small number of ways, cancer has made me feel different and alone. But for the most part, it has made me feel just the opposite. It has made me feel connected with other people in a way I have never felt before. It has helped me be more empathetic, more honest, more human. 

I believe that we are all connected by knowing what it feels like to have a significant part our lives collapse; having something happen that changes everything. Obviously cancer patients don't have a monopoly on that feeling and I don't think it's healthy or helpful to pretend that we do. 

I hadn't read the Everything Changes quote yet when I stood in Becky's kitchen watching her chop apples and trying to decide if I would have a slice or not. Nevertheless, at that time, my mind had wondered to the very sentiment Ms. Rosenthal grappled with above. But I see it a bit differently. Sure, Becky doesn't have cancer and probably doesn't worry about pesiticides every time she touches fruits or vegetables. But Becky had her own near collapse in the very recent past when she watched her father, the proud and most benevolent king of her big and young family, battle back from a sudden and life-threatening illness. She waited while he underwent a surgery that doctors admitted was terribly risky. She raised three kids and held a job in the meantime. And I'm sure there are other things I don't even know about Becky that could prove this point once more. I don't know Becky very well, but I know that cancer didn't make me different from her. Life puts challenges in front of all of us and we all need to decide whether to rise or fall to the occasion.  

Nevertheless, ignorance of one's vulnerability probably is a luxury. I see that ignorance in my own children and it's precious. But there's also preciousness in knowing that every day is a gift.

At some point, all of us will experience something that seems to change everything, straight down to how we wash an apple. It may be something sudden, like a cancer diagnosis, or something more gradual, like the unwind of a marriage. It's wildly ironic that when that thing happens, most of us will feel alone -- painfully and tragically alone -- when really, we are now connected to countless others in a way we never were before.

It's only now, almost two years after my diagnosis, that I've realized that when everything changes, the most solid stuff stays the same -- love, fear, and the truth that we are all human. Not a hero and not a failure. Not someone with something or someone without it. Just human. Trying to eat every bite of the apple while hoping we don't choke on it or die of cancer. And trying to enjoy how delicious it all is in the meantime. 

The Breeze

I have never researched anything about cancer, save Googling the name of my chemotherapy drugs so that I can spell them correctly in this blog, and even that took months for me to be able to do. Recently, however, in trying to draft a “book proposal” for my memoir, I have dabbled in some related research. (Note: I only recently confirmed that I know what a “memoir” really is and I only just learned that non-fiction books need “book proposals” prior to finding an agent and a publisher. Who knew?!)

On my day home to write last week, my research-dabbling didn’t go very well for a few minutes there. I had ordered this book called, “How to Write a Book Proposal,” and I was happily skimming through it at my desk. When it introduces a new concept, the book offers examples of real proposals to demonstrate the point. One such example was a book that had to do with cancer. If you’re brave, feel free to look closely at the example in the photo below. Or, if you’re like me, please don’t bother. 

After reading that example, I felt the hair on the back of my neck stand up, and adrenaline, or something like it, rush through my veins. The room spun and at first, I was too scared to try to stop it. But a minute or so later, I got up from my chair, poured some cold water, and carried on. Once my stomach settled back into place, I even laughed about how ridiculous it was that I stumbled upon that page on my merry little Monday.

A week later, as I sat on our porch with my laptop for a few precious hours of working on the proposal, I decided that I was ready to find some statistics. “How to Write a Book Proposal” suggested finding statistics to prove that there is an audience for the proposed project, so I decided I would do it, even though I knew I could ask others to do the research for me if I really needed to. But, almost two years after my diagnosis, it was time.

I went to the Chrome address bar and typed in, “Number of people in the world with cancer.” A minute later, I learned that each year, 14 million people across the planet will learn that they have cancer. Twelve percent of those people (approximately 1.9 million) will have breast cancer (13% will have lung cancer, the most prevalent of all cancers). A statistic followed about how many people die from cancer each year but I didn’t let myself read that one, or if I did, I didn’t allow myself to remember it.

I don’t know if it was that tiny bit of research, or more likely that I have been thinking a lot about friends who are battling metastatic disease, but for whatever reason, today I was particularly anxious about an ache I felt in my neck. I know, I know, I know; I could have just slept on it wrong or hurt it while exercising. But still, I want to simply state for the record (for the 6,718th time) how terrifying it still is to live with the reality that something deadly was, or is, or one day could be inside me.

As I speed-walked to my train after work today, I thought about how frustrated I was that I still have these moments of paralyzing fear; when my stomach sinks and tumbles and everything else tightens. I tried to go back to the meditation principles that I learned in the stress reduction class I took. Instead of thinking about the ache in my neck or the terror and dread I feel thinking about what my family and I would have to go through if that ache was cancer, I decided to stop and see and feel what was around me. I noticed immediately that the breeze was the most perfect temperature. Perfect. But since I suck at meditating, my mind quickly returned to thinking about how I needed to get my fears down on paper as soon as I reached my seat. A minute later, as I boarded the train, I thought of an analogy that somehow helped me feel less frustrated by my persistent fears. The thought came from the breeze.

If I lived through a tornado
that spun from where it shouldn’t
If I built everything back up again
that the tornado had torn down
If, then, I felt a warm breeze
I would shiver
Because I know now
What the breeze can become

Being a cancer survivor is kind of like that.

Ladybugs

Back in January, I started to work with a new client who I will call "June." Much like the other pro bono clients whom I have helped obtain asylum in the U.S., June has been through hell and back. There's no doubt that she is traumatized by what she has endured, just as anyone in the world would be.

A few months ago, June had to visit Boston for an immigration court hearing. For logistical reasons, and given the fact that June suffers great pain when she sits for long, I offered up my parents' house for June and her small entourage to stay the night before the hearing. Brian and I don't have any extra bedrooms in our house, and since my parents do, they graciously agreed to host three complete strangers without so much as a pause. 

The night before the hearing, we all gathered for pizza. It was one of the most precious nights of my life--watching a group of people from such (such) different backgrounds come together for some cheese pizza, vanilla cupcakes, and Sprite (all June's choices).  

The night of the pizza dinner, my parents and I all got home from work early to prepare for our guests. I picked up the food, my mom set the table with place mats and cloth napkins, and my dad turned on music and nice lighting. I was excited, and a bit nervous, to welcome our guests to my parents' beautiful home.  

Sometime before dinner, I noticed that my mom had placed a small glass ladybug at each person's place setting. My mom likes to collect cute things like that and little (and big) pieces of art decorate the entire house. Through June's interpreter, we discussed how the ladybugs would be good luck for the hearing the next day. We ended up needing luck, and for whatever reason (perhaps the ladybugs?), we got it. 

A month or so later, I was standing at a cash register at a gift shop. On the counter I spotted a basket of tiny glass ladybugs. Each one was $1. I bought one for June. 

This past Friday morning, still nauseous from the two hour bus ride that I need to take to reach June every time I see her, I dug around my briefcase for the little mesh bag with the ladybug in it. When I found it, I handed it to June, who looked totally confused and curious as to what I could have brought her. 

June didn't even open the mesh bag. The moment she saw the tiny ladybug through it, she gasped, put her hand over her mouth, and started to weep. I hadn't anticipated her reaction beyond hoping that she smiled, and this reaction was most certainly not one I had expected. June continued to weep, shaking, and holding the mesh bag up to her heart. 

I gave her some time and sat, a bit stunned, thinking about what in the world I should say. 

Finally, I told June she was so kind to be so grateful. Her interpreter told her what I said in her language. She continued to weep and shake and hold the ladybug up against her chest. 

I tried to make a joke. "Wow! That $1 was the best dollar I have ever spent!" Even before the translation, June laughed. Honestly, it was. 

A minute later, June tried to collect herself to tell me something. I will never ever forget what she said. As her interpreter translated it for me, I watched June. "It's not how much it cost," she explained, "It's that this shows me that you were thinking of me. It shows me that I'm not alone." 

"You're not alone," I told her. 

A few minutes later, we got down to work. 

*   *   *

Prior to getting cancer, when my clients would cry while recounting their tragic stories, I felt like I should do something to help stop their tears. I wanted to be able to say the right thing or make a joke or distract them so that they wouldn't have to feel all the pain that I saw them feeling. 

Cancer changed me in this regard. I explained this to June during a prior meeting when she was having a terribly hard time controlling her emotions. She was clearly distraught by the very fact that she was distraught; a whole other layer of pain that I knew she didn't need to endure. I explained to June (who already knew that I had cancer) that our situations were obviously very different, but that it was okay to cry. I told her that I can hold it together pretty well 99.9% of the time, but without fail, every time I see my oncologist, I bawl my eyes out in the exam room. So much fear and pain that I hold in comes pouring out to his person that I have trusted to solve my biggest problem. Not that I mean to compare myself to Dr. Bunnell in this analogy (conceited much?), but my point was only that sometimes we all have a space where, for whatever reason, stuff that we keep inside just can't stay packed up anymore. I told her my colleague and I were happy to provide one of those spaces. 

I still hate to see my clients cry, but when they do, I no longer feel like I need to stop their tears. I know I can't take away their pain just like Dr. Bunnell or Dr. Fasciano can't take away mine. So I give them time and space to cry. I listen. And I think about how to help them get through what we need to cover in that meeting with as little discomfort as possible. 

Still, for all I have written about, reflected on, and bottled up regarding my cancer journey, I never expected that June would help me better understand it by her reaction to the little $1 ladybug. But she did. What June said to me last week made little puzzle pieces in my mind come together. She was so truly right. When I am my most scared about cancer, or anything, for that matter, it's when I feel alone.

Last week, on my bus ride back from that meeting with June, I thought about June's reaction to the $1 gift I gave her. I felt awful motion sickness, but I also felt pride. The little glass ladybug had done for someone else what so many others have done for me -- it helped June feel less alone. And for that, I will allow myself a moment to feel infinitely blessed.

Still here and still writing

I just wanted to let everyone know that despite that I have been absent from the blog, I have been writing just as much as usual. For some reason, in May, I became obsessed with writing the Introduction to the book and finding the perfect title, both of which I believe I have now done. I cannot wait to share so stay tuned. Thank you all for your never ending support.

The Book (Part One)

Earlier this week, I finished the first draft of my book—three hundred and forty seven pages of real life; of new stories, and of stories born from this blog. Despite the perfect fonts that I found for the chapter headings, those 347 pages need work, lots of work, and even after the upcoming months of editing, there’s a very good chance that I collect enough rejection letters from publishing houses to decide to self-publish. Nevertheless, which company prints and binds that book does not matter to me. Because what I made and how I made it already feels like one of the proudest accomplishments of my life.

Writing the draft of the book was, at times simultaneously, an extremely painful and deeply fulfilling experience. It was hard for many reasons, including that I am a loyal member of a generation that much prefers the immediate kind of gratification to the delayed kind. More than that, however, was the challenge of not only revisiting some of the most difficult times in my life, but also reliving them. I couldn’t help but become entrenched in the memories, many of them scary and painful, and some of them wonderfully precious, as I described them in more (or less) detail and reflected on them with a more developed and informed perspective. A few times, the recollections caused me so much anxiety that I needed to stop and walk away, but I was always able to return and finish the chapter, even if it was totally crappy, and even if my hands still felt shaky on the surface of my keyboard.

Another great challenge of writing that draft is that life didn’t pause for me to do it. Lots of stuff, both good and bad, happened in the ten months that I have been working on the book and many of those events shaped a new understanding of experiences that I had already put down on paper. Should I go back and edit my earlier thoughts on a topic considering what I think about it now? Or should the book be transparent about how those understandings developed? These types of decisions weren’t, and still aren’t, easy ones.

I first conceived of writing the book after several people told me that the blog had helped them process a difficult time in their own life. They emailed me with messages about how they had come across the blog and read hundreds of posts from it, like it was a book. They told me that my story gave them hope. I loved that my story had somehow given them hope because I knew that when others gave me hope, it was the most precious gift I had ever received.

At the same time, I knew the blog is often a rambling mess. It jumps around in time and in theme and I know there are still grammar and spelling mistakes all over it (gasp). When I write in the blog, it is for my own emotional therapy, and I can never predict when I will feel like telling a certain part of my story. Therefore, the blog tells a story out of chronological order and I knew that whoever tried to read it like a book could eventually despise its organization or lack thereof. There was no doubt—I needed to reshape the story, and in other parts, tell it for the first time. The blog was raw, and as far as blogs go, that was fine, but last year, I started to want to create something more refined; something cleaner, even if it addressed topics that often felt like heaps of a big shitty mess.

In the end, I wanted to create something that my loved ones and strangers alike could hold in their hands—a place to find even just a glimmer of hope in the face of cancer or any other life challenge.

Over time, however, my motivations evolved into something quite different than all of that.

I still cherish the concept of hope, but I’ve arrived at an issue with it—it’s innately forward-looking. That’s not necessarily a bad thing, but looking forward is pretty complicated, particularly in the world of aggressive forms of cancer, and particularly when I have, in the last few months, come face to face with several stories of metastatic disease and with my own deep-seeded fear that my own cancer had returned. By no means am I saying that these experiences have caused me to give up hope for my own future or for that of others because indeed, they have not. Rather, these experiences have started to help me learn how to relax my somewhat-toned hope muscles. And in a way, relaxing those muscles is just as important, and as difficult, as flexing them.

Part of what lead me to this evolution in my relationship with hope is a newfound interest in meditation. A good friend and I have been taking a class during our Wednesday lunch breaks on "mindfulness based stress reduction" and what I have learned there has changed me in a good, solid, balanced sort of way. Granted, I don't stop to listen to my meditation tapes often (a few times a week if I'm lucky), but I love that short time when I find it. I totally suck at meditating because just a few minutes into following the instructions to observe my breath or relax the muscles in my face, without fail, I fall asleep for the rest of the time. I've gathered that it's hard to meditate well when you can't stay awake for it, but still, I love the principles of the practice. In fact, the “I am here now” perspective that I clung to in my darkest times is at the core of those principles. Thus, in a way, I had a solid head start.

Perhaps the biggest lesson that the class has taught me is that my mind and my body are so very often in two completely different places. I'm trying to learn to keep them in the same place at the same time—to live, in good and bad times, by the idea that I am here now, and to see, hear, smell, and feel more of that now.

This practice at first made me wonder if hope is innately at odds with the idea of living in the present moment. When we hope, aren't we really just wishing for something in the future? If so, are we wasting valuable energy hoping—energy that could be used observing and maybe even appreciating the present? Sometimes, yes, I may waste energy that way. But I've come to realize that hoping and being present are not necessarily at odds.

To Be Continued…