Friday, October 30, 2015

Skeleton Earrings

About a month ago, I visited my PCP for an annual check-up. I pulled into the parking lot of the building where I was diagnosed just over three years ago. I looked right, to the section of the lot where I had parked that fateful August day back in 2012. I have avoided that part of the parking lot ever since. In fact, I even considered finding a new primary care doctor because of the awful memories I had made in that building.

That morning of my check-up, however, something came over me. I very rare swear, but as I pulled into the parking lot, I decided to turn into a spot just next to the spot I had parked on August 8, 2012 when the radiologist told me I had cancer. "F#&k that," I said out loud to myself. By "that," I think I meant cancer.

It was a small victory, parking in the dreaded section of the lot that I had so avoided for three years. But it was a victory nonetheless.

Today, I had a similar victory. Ever since Halloween day 2012, I have refused to wear anything that I had been wearing that day. I gave away the clothes I had worn, and I was spooked by the homemade skeleton earrings that had accompanied by newly bald head. Without any real thought, I assumed those earrings were bad luck or had bad vibes or were ... something bad. Actually, I don't really know what I thought. I just associated those skeleton earrings with the day that I learned I was deathly allergic to my chemotherapy, and that was not a fun day.

This morning, however, as I reached into my jewelry box, I decided I wanted to wear those skeleton earrings. Sure, the last day I wore them I knocked on death's doorstep, but...well, "F&*k that," I whispered to myself as I put them in my ears.

Tonight as I changed out of my clothes and into my pajamas (at 5:30pm), I got to thinking about those earrings, and Halloween, and even that silly parking spot. And with a whole different attitude, and a little smile, I may even have looked in the mirror and said, "F*@k that," to myself. And really, I very rarely swear.

*   *   *

I barely remember the last time I wrote in my blog. This must be the longest stretch I've ever gone without it. The reasons for my blogging absence boil down to two very simple ones -- (1) every ounce of my energy I have poured into my new teaching job, and (2) I have never been so fulfilled. Granted, there have been some tough times -- a few dark spots when I was convinced that certain pain I felt was my cancer back with a vengeance, and a few sleepless nights wondering if I should begin on medication to shut down my ovaries as another way to lower my risk of recurrence. But all in all, life has never been so good.

With that very last statement (which I deleted thrice and added back each time), comes a bombardment of guilt. Because while I have been blessed to remain cancer-free (I think) and pursue my dream to write and teach, I know that so many other cancer survivors are not as fortunate. In fact, it feels like in the last few months I have heard countless stories about cancer's most relentless nature. Dear friends of mine continue to battle its wrath. And so I admit that I feel guilty. Guilty for my own luck, my own health, and my own healing. It's a whole different kind of "survivor's guilt," I guess.

At the same time, the truth is that "healing" after a cancer diagnosis is not the linear process that everyone wishes it would be. The path is more akin to the footprints of a child lost in the woods. And for someone who has to face cancer more than once, I can't even imagine what it's like.

*   *   *

There are a few things I try never to say to any cancer patient. "You'll be okay,"* is one of them. Because how do I know? I don't, despite that I live in a culture that likes to make false promises. But none of us know what the next minute will bring. I no longer find that reality depressing or pessimistic. I just know it's reality. Honest. True. Life. (*Please note that stories about people who have beat cancer are different and still very helpful.)

What I do want to tell cancer patients takes more than four little words (or three if you count the contraction). Well, maybe what I want to say is short, too, but it comes from a place of significant thought, I promise. I want to tell them, "You are here now. Please know that. You are. Here. Now." I want to tell them that there is so much light and so much life after a cancer diagnosis, despite the number of sunrises that follow. I want to tell them that there will be bumps -- big ones -- and there may even be some moments when you feel like you ran face first into a brick wall. I know that's how I felt three years ago on Halloween. But I also know that today, without any plan to do so and anyone else even knowing (until this blog, of course), I had a small victory that involved a ridiculous pair of homemade earrings. Skeletons earrings that have survived in my jewelry box for three years.

I see now that healing, like hope and like pain, comes in all shapes and sizes. And I see now that small victories -- like parking spots, earrings, and the quiet whisper to oneself, "F&*k that" -- are victories nonetheless. 

Monday, September 7, 2015

Cancer Changes Everything

It's been a while since I sought respite here in the wee hours of morning, and that realization helps me see how far I've come. Then again, it is 3:00AM (on the dot), and my fear has lead me to my key board. I take my place here tonight (this morning?) to state for the record that sometimes it feels like cancer changes everything.

The fear that has me physically shaking has to do with my seven-year-old, Teddy -- the most active (and awesome) little boy I'll ever know. On Saturday night, Teddy got sick. I knew something was wrong the moment I looked at him. He had just played flag football and according to his coach, he completely crashed afterwards. When I saw him, he was pale and he wanted to sit with me rather than play with his friends so I knew something was really wrong. We sat together for a while, both of us sick to our stomach, though for different reasons.

A short while later, he said he felt better so he went off to play. But not long after, he was back and asking to lie down on the sofa. He did, and fell asleep, only to wake up to the need to barf all over the place.

Since then, Brian has barely left his side. The poor little guy has thrown up nine times (he kept count). His temperature has hovered around 100 degrees and he has done nothing but sleep and ask us when he is going to feel better. Whenever he asks that I assure him that he could feel better the next time he wakes up and I tell him that I wish I could take all his sickness away and put it in my own stomach. It's truly heartbreaking to watch your little kid be sick.

It's also absolutely terrifying. On top of the constant puking and the fever, Teddy has been complaining about a headache. Every time he says it, I want to puke, too.

I admit, before my own cancer I would have worried about my sick son. But I just don't think my mind would have gone to the dark places it has gone now -- to crushing thoughts about leukemia and other childhood cancers. But perhaps as evidence of a tinge of my own post-traumatic stress, that's precisely where it seems to have landed. At least, this morning.

*   *   *

This past week, as I started my new teaching job and thought to myself at least twice every single minute, "I am the luckiest person in the whole entire world," I even threw cancer a few silent "Thank yous." I never would have had the guts to quit the law and return to teaching if it wasn't for cancer. Or even forget guts -- I never would have had the insight that lead me to the realization that that is what, deep down, I really wanted to do.

But right now, as poor Teddy sweats in my spot in bed next to Brian and I lie awake, shivering, downstairs on the sofa, I want to spit at cancer and take back any hint of Thanks I ever gave to it. Because at this very moment, it feels like cancer changes everything. After cancer, a headache is no longer just a headache. After cancer, a lump is no longer just a lump. After cancer, the Intruder has an awful way of reminding us of his potential presence.

And so I lie awake and listen...hoping and praying with all my might that the heat coming from my son's skinny little body has absolutely nothing to do with that beast. I lie awake hoping and praying that the sickness I feel isn't just worry, but rather a stomach bug that will prove to me that Teddy is sick in a "normal" contagious sort of way. Because sometimes after cancer, nothing feels normal -- both in the miraculously good ways that I found in my classroom last week, and in terrifyingly bad ways that torment me when I see my son sick.

Monday, August 31, 2015

Laundry, Lady Bugs, and Lint

I am really good about making sure clean laundry is available to my family but I kind of suck at folding the clean clothes and putting them away. For the last few days, three baskets of clean laundry has lingered around our kitchen table as the kids fetched their favorite clothes and faded bathing suits out of them.

Last night before the kids went to bed, in an effort to ease them back into the reality that summer is ending and structure and responsibility are on the horizon, I decided that we would all fold the laundry together and finally put it away. Teddy and Annabel saw it as a way to stay up later so they agreed to help. It went swimmingly. For the first 90 seconds.

Then I found a lady bug.

It was odd, I admit. The lady bug looked perfectly fine, stuck to the inside of a new black t-shirt that I had just purchased on sale (apparently I missed the "dry flat" instruction so what was once a medium is now an extra small...oops).

Anyways, I remarked about the lady bug to Teddy and Annabel and, perhaps seeing a chance for an even further delay to bedtime, they appeared interested. I tried to pick the lady bug off the shirt to bring it outside but the little shiny bug fell to the floor. Clearly the thing was dead. D-e-a-d. Dead.

All of the sudden, Annabel lost it. She started to wail, "Is he ever going to be not dead? But once he's dead he won't ever be alive again!!! Fings that die don't ever be alive again." Her tears looked so enormous on her tan little face.

At first, I pretty much ignored her. I had a goal: finish the damn laundry before bed. So I told her something about heaven and figured she'd move on with me. She didn't.

She kept crying and I could almost see the thoughts in her head. Thoughts about permanence. About something or someone being gone. Forever. As I let her emotions seep into mine, I could feel my heart start to feel heavy. Sad and scared and heavy.

Annabel kept on asking me whether someone who dies will ever "get not dead again." I had no freaking idea what to say. Still folding and trying not to make a big deal about it, I tried to tell her something about a person's spirit remaining alive. But she didn't understand, probably because I didn't make much 4-year-old sense. I stopped folding.

I picked up my daughter and sat down with her on a big chair in our living room. I hugged her. I told her that sometimes I have thoughts like she was having and those thoughts are so hard. I agreed that it is really yucky to think about someone you love being gone. She settled down a bit.

Still stumped as to how to deal with the sobbing, I went back to fundamentals. My own adult fundamentals, I admit, but it was all I could think of. I told her, "Oh, my Boo," (that's our nickname for her) "Let's not think about years from now. Let's just think about this moment. And at this moment I'm here and you're here and Daddy is here and Teddy is here." She immediately retorted with something about one day us "getting dead" and how sad that would be. She's so darn persistent. And so darn right.

The heaviness in my heart grew heavier.

I held her tight and said I understood her but that sometimes when it's scary to look ahead, we just need to think about what we have at this very moment. I repeated to her that I understood and that I get sad when I think about those things too. I told her that she was brave to talk about it with us because that's hard to do. She cried a little more and may have even started to recognize this conversation as a tactic to further delay bedtime (I don't think it started out that way, but still...). So I shut that door, thank you very much, and carried her upstairs to brush her teeth. A few jokes about Daddy's belly button lint and she was giggling again. Thank goodness for Daddy's belly button lint.

In the end, I have no idea if I made things better or worse for my Boo last night. I just know that as I sang George Michael's "Faith" to her at bedtime, she was smiling. Thank goodness for George Michael too, I guess.

Now if only someone would put away that folded laundry at the top of my stairs. Nah. I'd rather just write about it.

(To be continued...Because Teddy's mind is always going, too...)

*   *   *

For those looking for more information about speaking to children about cancer and death, check out these recent pieces that I really appreciated. 

Boston Globe Article by Kristi Palma, "Talking to young children about death" (I hesitate to include this one because upon re-reading it, I realize that I failed on several pieces of the advice!)

Tuesday, August 4, 2015

Zone Three

Apparently lightening struck the Providence line commuter rail track this morning which means big delays. So I sit on a bench at the station waiting for a train to work and reflecting on the 11 years I have commuted into Boston...

*   *   *

Before I went in to have both of my breasts removed, a weird sort of nesting thing came over me. I wanted to make sure that our house was in order while I was away, which made sense I suppose. But there were a few twigs in my nest with which I became obsessed and those small pieces didn't make much sense at all. One involved my family's coins. In our kitchen junk drawer, we had accumulated a sandwich-bag full of coins and I was set on cashing them in. Granted, this was at a time when doctor appointments and surgery-related preparations took up the bulk of most days, so I have no idea why this mattered to me so much, but it did. 

I had long since given up the exercise of rolling coins so the solution was a simple one. I just had to get to the Coin Star machine at my local supermarket. The machine would take 10% off the top but I didn't mind. I just wanted those coins gone. 

The problem was that every time I tried to get to the Coin Star machine during the week before my surgery, something got in my way. So my bag of coins sat in my car, waiting as impatiently to be cashed in as I waited for my breasts to be removed.

I will never forget a day or two before my surgery when we were out and I told my mom about my coins. I presented it jokingly but she knows me enough to know that deep down, I was serious. 

Of course, she drove me straight to the Coin Star machine and I felt an odd sense of relief as I walked away with a ticket worth about $50. It was probably 0.03% the cost of my surgery. 

I don't know if it's true for others who have gone through a traumatic time, but I have arrived at a few other fixations throughout my cancer experience, most as seemingly insignificant as the bag of coins. I feel the need to write about one more of those now, as I sit still waiting for a train to work. I want to write about my monthly commuter rail passes. 

*   *   *

I have commuted into Boston since 2004. For the first four of those years, I made the trek for law school, driving in on the expressway three or sometimes four nights a week after work for my classes. The traffic was atrocious if I left any later than 4:45 PM but if I left before then I could make my first class that started at six (and maybe even down a grilled cheese from the cafeteria beforehand).

Once I got my first lawyer job, I switched to riding the commuter rail into the city. It always seemed to be an eventful journey, mostly since I had to get Teddy to day care by 7:45 and he has never been easy at getting ready to go anywhere. 

When everything goes smoothly, the commute to and from my office is one hour door-to-door each way. I hated that hour so much at first, as anxiety plagued me. But life experience (plus Effexor) has helped me a lot and I have come to not only accept the reality of a commute but even enjoy it some of the time (not including last winter!). 

After I arrived at my new firm four years ago, I started to get my Zone Three train passes every month. It was my ticket into the city. When a new month rolled around, the previous month's pass was rendered useless and while I like to throw away anything unpurposeful, for some reason I let these train passes pile up. I couldn't let them go.

Every month when I put the new pass into my bag, I had a flash of overwhelming gratefulness and anxiety. I would think things like, I'm still here. Another month cancer free. But will I get a pass next month? Or will something crazy happen, related to cancer or not, that will make this month's pass the last one? It was such a strange obsession and I still don't fully understand the root of it.

What I do know is that my July 2015 pass is the last monthly pass I will buy for a while, or maybe even forever. While I still have to work these first two weeks of August before I begin teaching after that, I decided to forgo the August pass and buy a 10-ride pass on my phone. In fact, since I began this post, I boarded the late train and just flashed the conductor the mTicket app. Activate ticket.

I had no idea where I was going with this post when I started. But as the train pulls into Hyde Park station, just a few stops away from South Station where I will depart, I have found a bit of clarity. 

The truth is that cancer or no cancer, none of us know what the next month will bring, or even the next moment. In fact, in the minute before I sat down on the bench at the train station this morning, I heard about a young mother who lost her husband unexpectedly just weeks after she underwent a double mastectomy for breast cancer. I can't even comprehend it. Or maybe, a tiny, tiny part of me can. And my heart breaks. 

The last three years have taught me so much, including that anything can happen to any of us no matter how good we are or how hard we work. Next month's train pass is never a given. For so long, that thought has terrified me. But in a crazy twist, that thought brings me an odd sense of hope this morning. Because tragedy hits all of us at one time or another. But in the last three years, I have seen countless stories of people who have continued on in the face of those tragedies. They have lived strong when doing so seemed absolutely impossible. 

The hope that churns in me now is supported by the fact that I sit wedged in the corner of a crowded train with hundreds of commuters who are likely late and frustrated, but who neverthless appear calm and patient. It is supported by the fact that I don't have an August train pass, but not because my cancer came back. I don't have an August train pass because I chose not to have one. I chose, instead, to have my own classroom again -- an honest-to-goodness dream-come-true. And believe it or not, that classroom, and that dream, is walking-distance from my house. 

*   *   *

Last stop. South Station. Have a great day, everyone. 

Wednesday, July 1, 2015

Scared of Not Being Scared

I hate to repeat myself and I hate to write blogs that I know are mediocore (at best), but tonight I'm going to do both of those things. In a vacation house full of sleeping people I love, I am wide awake, not only because I was the last one to wake up this morning, but because I'm scared. Yes, I'm scared. Scared for the same reason that I've written about countless times before. Scared that I have cancer in me.

I know the story is getting old, which is why I really don't talk about it with anyone anymore. But this is the space that is always willing to listen. It is the space where I can admit -- despite the redundancy of it all -- that my anxiety once again appears to be buliding as I near the anniversary of my diagnosis.

I thought a lot about this fear and anxiety today in a quiet 20 minutes I had alone kyacking on a lake in Maine. During that precious time, something clicked for me. An epiphany of understanding. A moment when I realized that I'm actually scared of not being scared.

The truth is that in the past few months, I've been relatively not scared of my cancer coming back. I've been particularly busy, which helps, and while there have been blips, overall, I've felt good both mentally and physically. The most valuable proof of this progress is in the fact that during the past few months, I've thought a lot about the future -- even the long-term one -- without anxiously doubting that I will be blessed with it.

Then, the summer arrived. I love the summer. But it also happens to be the season that I still associate with the scariest time of my life. Yes, those memories still weigh heavy with pain.

Today's realization was so simple yet so truly significant. I am scared to not be scared. I'm scared of that fact that I started to let my guard down. I'm scared that I started to feel free again -- free of the burden of cancer. Because the last time I felt free like that was right before I was jolted by the news that I sometimes still cannot fully comprehend.

Out on the kyack today, cruising across the glassy, gorgeous lake, I wondered about the dangers of feeling free. Am I setting myself up for another awful shock? Are these pains I feel in my chest and my neck something gravely significant -- the dreaded nightmare that "it's back"?!? It's come back in so many others, so why wouldn't it come back in me? These thoughts haunt me. Then I hate myself for thinking such negative things. And I wonder if my chest hurts because of the kyacking.

This blog is D+ material but I'm going to publish it anyways. I'm going to publish it because no one ever told me that there could come a time when I become scared of not being scared. But since that's happening to me, perhaps it's happening to others. And even if it's not, I'm sure others nearing their cancer-versary would agree -- it can be such a difficult and complicated time, and hearing others admit that is sometimes all you need to feel like the heavy burden is just a little bit lighter and easier to handle.