Thursday, October 24, 2013

Because she told me to...

My mother requested that I write this and since she never asks me to do anything, I wanted to honor her request. She told me I had to explain to my readers -- whom she assumes still exist -- that I am fine. So, reader(s), I'm fine. 

In fact, despite the silence in this space, I have been writing more lately than ever before. Almost every night of the past week, I have literally fallen asleep with my MacBook on my lap in bed. What the heck are you doing? you may ask. I've been hesitant to admit it because that would make it an expectation, and sometimes life is more fun without those. But I think that I'm OK with this expectation because I know now, months into the project, that it will happen. What will happen? The book that I'm writing. And I really can't wait to share it with you.

*  *  *

Good Words: Wonderful World

There's a wonderful world where all you desire
And everything you've longed for is at your fingertips
Where the bittersweet taste of life is at your lips

~Bruce Springsteen

Wednesday, October 16, 2013

Letting Go

I wept like a child. Not because I was overwhelmed at having survived, although I was. I was weeping because Richard Parker left me so unceremoniously. It broke my heart. ... I suppose in the end, the whole of life becomes an act of letting go. But what always hurts the most is not taking a moment to say goodbye. I was never able to thank my father for all I learned from him. To tell him, without his lessons I would never have survived. I know Richard Parker's a tiger but I wish I had said, "It's over. We survived. Thank you for saving my life. I love you, Richard Parker. You'll always be with me. May God be with you."
~Pi Patel, from Life of Pi

*  *  *

I received my last Herceptin infusion today in the exact same chair in which I had my anaphylactic reaction almost one year ago. When the nurse lead Brian, my mom, and I back to that chair, I couldn't help but laugh at the sheer coincidence that this would be only my second time in that particular infusion suite. "Back to where it all began," I remarked, and a few minutes later we found ourselves sarcastically singing, "Memories." 

The process of inserting the IV into my arm had not been an easy one three weeks ago. The infusion nurses kindly dug a needle around in my veins five different times before, 45 minutes later, they found a route into my bloodstream. It wasn't fun, but it didn't cause any damage aside from four big bruises on my arms that made me wonder if people could think I was a drug addict. I knew that it was mostly my own fault -- the day prior I had traveled for work and I hadn't focused on drinking water like I usually do the day before an infusion. My veins were dehydrated and tired and screaming that they had had enough. 

Yesterday, I drank about 15 glasses of water and I had consumed at least four more this morning by the time I reached the infusion chair. The excessive time spent in the ladies room was worth it because my IV went in on the first try with only minor needle-digging. The Herceptin bag made its way up from the pharmacy soon after and so began (what I hope will be) the last infusion necessary to successfully treat my cancer. 

The infusion itself was normal. Brian caught up on one of his (previously) secret fascinations -- People magazine -- and my mom faked that she was taking care of a work issue while she coordinated a surprise gathering of my family eight floors down in a conference room. I didn't do much more than sit back and feel the cool liquid flow into my arm. 

When a patient's bag of chemotherapy or biotherapy medication drips down to empty at the end of an infusion, the computerized machine attached to it starts to beep. A half hour into my Herceptin, I knew the beeping was imminent. I hadn't planned what I would do or think or feel at that moment. Come to think of it, I probably should have because it could have been really bad, but luckily, what happened was perfect. 

Somehow, everything around me fell quiet. I leaned by head back on my chair and looked up at the near empty bag of Herceptin. I watched the drug drip into the tube attached to my right hand. I caught it at just the moment that the very last of the liquid traveled out of the bag. My teary eyes followed it, and the air bubbles that trailed, as it moved along the clear tube and into my vein. I will never forget watching the clear liquid fall through that tube, or the air bubbles that playfully chased it. I will never forget how time froze at that moment; how, despite how odd it may sound, I inadvertently stumbled upon a precious moment to say goodbye. 

It's not easy to say goodbye to something that saved your life. That's why I love the Life of Pi quote so much. I suppose in the end, the whole of life becomes an act of letting go. But what always hurts the most is not taking a moment to say goodbye. Despite weeks of trying to mentally and emotionally prepare for today's milestone, I never anticipated that I'd be blessed with a moment like I somehow was able to capture today; a moment to silently be thankful -- thankful at a cellular level -- for every minute of work, every penny, and every sacrifice that went into making it possible for my chemotherapy and my Herceptin to drip into my veins and save me. 

Once the beeping started and before the nurse came in to turn it off, I also got a minute to smile through my tears at my mom and my husband; to hold their hand, thank them, and tell them I love them.  

The whole of life becomes an act of letting go. It sure does, on an infinite number of different levels. I don't think that any of those levels are easy, and I believe that our lives are largely shaped by how we act, or react, when faced with them. 

When Pi finally found land, he wanted to tell Richard Parker, It's over. We survived. Part of me wants to say the same thing tonight. But another part of me knows that cancer, and life, isn't usually that simple. 

I admit, I'm not great at letting go, and, it turns out, neither are some of the people who I love most. Sure, that weakness has its drawbacks, but it also has its great benefits. Because on August 25, 2012, I wrote about how we wanted to take the kids to Disney World when I was done with my treatment. I learned today that my family never let go of that little sentence. Instead, they colluded to make it happen, and in a few weeks, we will all head to Disney together -- not so much to celebrate that it's over. But to celebrate that lots of awesome adventures are only just beginning.

Tuesday, October 15, 2013


I'm not even going to bother to count the number of blog posts that I have started on the topic of My Last Day of Treatment, although I think it's somewhere around six or seven.

I don't know why it's been so hard to write about tomorrow's milestone. Maybe it's because my emotions are so very tangled that it's impossible to unwind them. Maybe it's because the significance of tomorrow's infusion is so darn big that, like the concept of a galaxy, I can't even comprehend it.

I remember a few other times when I faced a similar difficulty while trying to write. One was after the chemo portion of the yearlong infusions ended. Another was before my one-year diagnosis anniversary. Regarding the latter, I tried for weeks to write about the storm of emotions that hovered over August 8th but I failed to produce anything that I could hold onto, never mind something that was coherent enough to be published. Finally, I gave up trying to write anything more significant than simply what I was feeling at the time my fingers touched the keyboard. I didn't even try to come up with a catchy title. I just called it, "The One About August 8th," an approach I totally ripped off from Friends.  

Once my confused blabbering in "The One About August 8th" was finished, I posted it to my Facebook page. Not long after, I had a comment. It was from Joy, a grieving mother who I had come to care so very much about. Just one week after losing her 26 year old daughter, Ashley, to complications from cystic fibrosis, Joy wrote to me about August 8th. In her comment, Joy said simply:

"Tomorrow you will take a deep breath and continue living." 

I cried when I read Joy's words. I cried because I was crushed by this mother's grief and humbled by her wisdom. And I cried because I had finally found some clarity about August 8th.

My Last Day of Treatment lead me back to Joy's words. Tomorrow I will take a deep breath and continue living. Yes, I will. And I don't take any part of that for granted. 

*  *  * 

I recently stumbled upon this African proverb.

Tomorrow morning, I'll try really hard not to fall into a heap of emotion on the floor of Dana-Farber. I'll try so hard to be strong. If I succeed, it will be because I've seen people display unspeakable strength when I'm sure they wanted to crumble. To all of those people, some of whom are as close to me as my mother or my husband, and others who are as distant to me as a mother from Maine that I've only met in person a few times, I hope you know that I am because you are. And, by the way, I would consider my life an enormous success if, one day (hopefully in the very distant future), my own children are able to say of me, I am because you were

Monday, October 7, 2013

Taming the Beast

There are times when I think that cancer was and will be a small blip in my life. In those times, I think that this whole experience will be like pregnancy or law school -- while it was going on, it felt like an eternity, but in retrospect, it was just a blink of the eye.

Then there are other times, when I realize that cancer has profoundly changed me; that it is an overwhelming beast that I need to somehow find a way to make peace with, or maybe even tame. Unfortunately, it's not easy to tame beasts.

*  *  *

I can't remember the last time that both of our kids were in bed and asleep before 7pm, but last night, miraculously, it happened. I admit, their early bedtime wasn't so much because they were exhausted but because we were.

There's an awesome irony in the fact that a few hours into the peace and quiet, I asked Brian if he wanted to do a little bit of adoption research together. He agreed to, and on our respective MacBook Airs, we started our first real research about how we could bring another baby into our home.

As I've described before, Brian is the steady one in our pair. He is thoughtful and purposeful and he doesn't let his emotions get out of whack (except, perhaps, when it comes to coaching hockey or inputting Apple IDs). So naturally, Brian's starting point for research was the process, the facts, the things we would need to have and to do.

I, on the other hand, found myself wrapped up in the emotional details almost immediately. Fifteen years of trying to be more like my husband, you'd think I'd have made some progress, but no. Instead, I clicked my way to adoption sites to read the profiles of couples and single people introducing themselves to birth mothers in hopes that the mother would choose them to be her child's adoptive parents. To be totally honest, I had no idea that domestic adoption worked this way.

For an hour or so, I read profiles and looked at photos of the pre-adoptive parents' homes and extended families. I read about their religion, their favorite books, and whether they have a gender or a racial preference. I read about how much they all want to bring a baby into their home and about why they have turned to adoption to accomplish that. And I realized, about 30 profiles in, that none of them spoke about cancer.

With this realization that we were different, and not in a good way, I was on the verge of tears. But Brian was in a groove so I didn't want to interrupt him. He was calm and collected, at least on the outside, moving between adoption related websites and Fantasy Football stats which is just how I thought it should be -- a dose of normalcy mixed in with something completely foreign.

Pretending that I was as stable as he was, I decided to check out the international adoption route. I read up on several countries and their individually complex situations. I learned the very basics about the adoption situations in Guatemala, Uganda, Ghana, South Africa, Bulgaria, and Haiti. I learned that adopting a child from a foreign country usually involves both parents making two trips there -- the first, a three to four week "bonding trip" and then a second trip, some weeks later, focused on completing the legalities and bringing the baby home.

One word kept coming up in my research, and in Brian's -- volatile. Several sites explained explicitly or implicitly that the process of adopting a child can be a volatile one -- with many unknowns, starts and stops, and sometimes, significant disappointment. I know that having a baby the natural way or through fertility treatments can involve all of the same, and I tried to keep that perspective.

But after a while, I couldn't contain myself anymore. With a huge lump in my throat, I told Brian that this was way harder than I thought it was going to be and I went to bed.

I turned on the Sunday night football game on our small bedroom TV, because those games have helped ease my anxieties ever since I was little girl. It's October, so there was pink everywhere. Brian quickly joined me and a few minutes later, we listened to the announcers explain the extraordinary progress that has been made in treating breast cancer. Still, I couldn't even see the game through my tears.

What is so hard about last night is that I can barely even articulate why I was so upset. Partly, I just wanted to scream in frustration; that I feel like I make such progress, then the terrible beast rears its ugly head again. I managed to get one thought out to Brian before I fell asleep and today, I'm going to start with just that.

"No one would ever pick a woman with breast cancer," I told him after he waited very patiently for me to want to talk. I was referring to birth mothers in the United States who would be combing through hundreds of profiles, and to my brand new realization that because of that cancer beast on my back, I was an unlikely candidate.

"But you don't have breast cancer anymore," Brian explained.

"Yeah, but no one knows the difference."

I cried myself to sleep in Brian's arms not long after that. It's been a while since I've worked myself up into such a state. Then again, beasts can be tricky that way.

*  *  *

Before I was diagnosed and for some time after, I equated cancer with a death sentence. I know that some people still think of it that way, because I hear it in their voices when they talk to me. I also know that some cancers don't offer patients a whole lot of hope, but from the very little bit I know through my own experiences, in most cases, breast cancer is different. Thanks to the millions, if not billions, of dollars that have been raised and pumped into breast cancer research, fortunate women and men with aggressive triple positive, triple negative, and even Stage III and IV breast cancers are living long and healthy lives. 

I know that Octobers have a lot to do with those millions of dollars. The pink that is everywhere, from the dye in the pages of the newspaper to the top of the Prudential Tower, helps raise awareness, and awareness matters. 

But "awareness" is an interesting concept that we should all think more about. Awareness of what? Awareness of how many people have, or will get, breast cancer? Awareness of how much money and work is still needed to cure the disease for all of its victims? Awareness of how much it sucks? Awareness of how much progress has been made? After last night, I'm gradually realizing how much I hope that all of that pink will help teach, or perhaps just remind a birth mother out there that breast cancer is not a death sentence. 

*  *  * 

I know that everyone loves a story that ends well. I know that there are some people who will follow this blog to see if we really do end up being blessed with an adopted child. But I'm not writing any of this to set up a "happy ending" and I really hope that's not why anyone is reading it. I don't think of my story in those sorts of terms anymore. There is no neat and clean beginning or middle. Or end. For any of us. 

I have no idea if we will end up pursuing adoption, never mind succeeding in it if we do. This morning, I just know that when I least expect it, cancer can hand me a moment when I feel like it's a terrible beast that I will never be able to tame. 

Last night, I ended up deciding that all I could do was cry myself to sleep when I came to a tragic realization to which I didn't even listen to Brian's response. "If I were a birth mother, I wouldn't even choose me," I explained, in my own terrible pity party. And in my half-conscious state before sleep, I considered taking this whole blog down, lest it crush any possible chance we have at someone choosing us. 

I decided this morning that I'm not going to take this blog down even though within these pages I have admitted that I let my kids eat ice cream for breakfast every now and then. To hide all of this would only just perpetuate the problem. We need to raise awareness about the progress that has been made, in addition to the work that still needs to be done. Because despite that my lullaby to Annabel last night was Katy Perry's Roar, and despite that stupid beast of a disease, I know that our family would be the perfect place for another little baby. And by "perfect" I don't mean perfect. I mean very loving. And very real. 

Friday, October 4, 2013

Me Time

The concept of “me time” makes me laugh. Not laugh like sincerely from my stomach, but laugh like sarcastically from my throat. I’m sure that any parent of young kids would agree. If we're at least attempting to be a decent parent, the traditional concept of “me time” simply does not exist.

Before I had kids, I never would have been able to comprehend it—that I would no longer go to the bathroom in solitude (and without questions about my progress); that sleep would come in short spurts between changing sheets, getting water, and telling Annabel to go back to bed. I never would have known that only one meal a day would be eaten while sitting down (that’s lunch, at work); otherwise, it’s cereal at the bus stop and dinner between spilled drinks and requests for more meatballs. I don’t mean to sound like a cheesy country song, but as crazy as it all is, and as much as Brian and I cherished (like really cherished) our three days in July alone at the Spruce Point Inn, I mean it when I say that I’d never want my life any other way.

I know several people, mostly moms, who are very much like me in this respect. If asked for a hobby, we pause, and feel pathetic. Hobby? I just try to squeak in a shower every day. Do showers count? I am so impressed by women who are in book clubs or moms clubs or who just go to a club. What do I do for fun when I have a moment of free time? I write about cancer. I know, I really do need to wind down the fun gauge.

I also know that I lack some of the more traditional maternal genes. I don’t buy my kids cute matching outfits, unless you count that they both wear their Red Sox, Patriots, or Bruins gear at the same time (and they do look really cute). I never remember to take them for hair cuts before picture day, and last time Brian went away for the night, I let them stay up for hours past their bed time and try to fall asleep in a homemade fort (that didn't end well). When I'm in charge, my children eat whatever they want and Brian was horrified a few weeks ago when he came down to Annabel eating a bowl of mint cookie crunch ice cream. What? It's what I wanted for breakfast, too. 

Annabel loves her John Denver, but she mostly sings Queen in a deep voice to her baby dolls when they need a lullaby. When Teddy comes out of his room in the morning with his shorts on inside out, I don’t encourage him to fix them. And I don't make up stories about angels bowling when it thunders out. Instead, I tell them what I learned in the planetarium, and I tell them that we'll go there one day. 

After almost six years, I've grown comfortable and confident with how I parent even if it's not how everyone else does. But I'd be lying if I said that I started out parenthood that way because I definitely did not. In fact, I started out being a parent motivated far too much by guilt. 

I remember the guilt I felt when I missed my baby boy roll over for the first time because I was in class. And I remember the guilt when I had to leave Teddy for most of the day so I could study for the bar. I felt guilty when I decided that breast feeding was too painful and inconvenient to continue and I felt guilty when I learned that other parents made their own baby food from organic vegetables (Brian tried it—we do not recommend). Before cancer (or maybe, before my happy pills), I felt guilty when I didn't exercise and guilty when I did. In my prior job, I felt guilty when I left work in time to have dinner with my family and guilty when I didn't. 

In all honesty, my level of guilt was probably at a pretty healthy level compared to some people. Even before cancer, I knew that I was not a bad mother just because I dropped my kids off at day care every day or packed them lunches full of preservatives. My mother worked my whole life and raised us on boxes of macaroni and cheese and there is no doubt how much I admire and love her. But still, guilt is an ugly feeling even when it comes in small doses. 

*  *  *

A few weeks ago, Annabel got an invitation to go to one of her pre-school pal's birthday parties at a local farm. Ward's Berry Farm reminds me so much of the last year, in a good way, because after Brian decided to go mostly organic, he started getting our fruits and vegetables from there. The goats and chickens entertain the kids and I'm always filled with peace after a visit. Farms just kind of do that to me. 

When I saw the date of the party, I was so disappointed. I knew we couldn't go because it was the morning of the American Cancer Society's Making Strides for Breast Cancer Walk in Boston. I reluctantly RSVP-ed No, but I was bummed out and didn't forget about it. I wanted a morning with the kids getting pumpkins and berries and birthday cake at the farm. But I didn't feel like I had a choice. I had to go to the walk and if I didn't, I knew the guilt would eat me up. 

*  *  *

On the first Sunday after my first chemotherapy treatment last October, I walked the short route of the Making Strides Walk in Boston. Brian’s high school alma mater, Catholic Memorial, turned out in huge numbers for walk that year, as they had for a decade prior and as they will again this year. They were even being honored on stage for raising more money than any other high school in 2011.

CM had graciously invited Brian and I to join them and of course, we were so grateful when we said yes.  To be honest, I didn't really let myself consider whether or not I wanted to go to the walk last year; it was simply something that I knew I had to do. I was so honored and humbled by the fact that hundreds of CM students and teachers, as well as students from Canton High School and Westwood High School, were walking with my name on their t-shirts. The least I could do was show up.

It was cold and pouring rain that Sunday morning. Four days out from treatment, I pretty much felt my worst. I shivered from nerves and from the lower-than-usual October temperatures.

There was so much going on that morning that I could barely process much beyond the fear and appreciation that Octobers and pink ribbons typically evoke in me. I ended up having to speak briefly on stage when the CM kids accepted their award. I obviously hadn’t planned anything and I barely remember what I said. In a way, the overwhelming feeling probably made it all easier—I just had to keep moving forward.

When I later wrote about the walk, I said very little. I wrote about how when we approached the finish, Brian said to me that that walk would be “the first of many.” His sentiment struck me, and I remember feeling overwhelming love for him at that moment. I also remember praying that my treatment worked so that he would be right.

When this October rolled around, the emails, postcards, and letters started arriving from the Making Strides organizers encouraging me to sign up for the walk. After weeks of trying to avoid them, I finally realized something it has taken me even more time to be able to admit—I don’t want to walk for breast cancer on Sunday.

My therapy lady appointment before last week's infusion helped me work through these issues. I hadn’t seen Dr. Fasciano in six weeks, and I hadn’t planned any help-me-with-this agenda items for our meeting. I hoped that if we had nothing to discuss about cancer, we could just talk about other stuff. I was being way too ambitious.

Just a few minutes into the appointment, I arrived at something I hadn’t planned on talking about with my therapy lady, or with anyone really. I arrived at the topic of the Making Strides walk.

I have been very hesitant to post this entry because I worry that people will misinterpret it. The nuances here matter, and if they are neglected, my message could come across as a personal dislike of the walk, or worse, a lack of appreciation for all of the people and the hard work that make it such an enormous success. That interpretation couldn’t be further from the truth. I love that walk and I care deeply about the well being of the people there. Plus, the American Cancer Society was intimately involved with the development of Herceptin and, I'm sure, countless other projects from which I have benefitted so there’s no doubt that the money raised at walks like that one changed my entire future (i.e., it gave me one).

When Dr. Fasicano first asked me why I didn’t want to go to the walk, I blurted out the first thing that came to mind. “There’s just so much breast cancer,” I told her. There is. That’s what makes it awesome and that’s what makes it terrifying.

Even more than a year out from my diagnosis, it's not easy to read the back of the “in memory of” t-shirts anywhere. It was difficult to see at the Falmouth Road Race and it was difficult to see at the Jimmy Fund Walk. But for some reason, at the breast cancer walk, it’s just too much. Too close. Too possible.

Dr. Fasciano helped me understand it all a bit more. She explained to me that from what she’s seen, I don’t identify with breast cancer. She thinks I naturally focus more on issues related to being a young adult with cancer. Damn; she's good.

The truth is that to me, very little of my journey has been about the breast part of breast cancer. Sure, I've written about my double mastectomy and getting my tissue expanders inflated before my very eyes. But even that wasn't so much about boobs for me. It was about the resiliency of the human body.

As anyone who has followed me on this journey knows, I have cared very little about trading out my real breasts for fake ones. In fact, on the list of parts of my body that I would exchange, boobs would be right up there behind my gaul bladder and my appendix. I completely understand that others feel differently, and I don't discount those feelings, but to me, boobs are just boobs. A dialogue in one of my favorite romantic comedies (Knotting Hill) said it best:

Anna Scott: But, but, seriously, they're just breasts. Every second person in the world has them.

William: Oh, more than that, when you think about it: you know, Meat Loaf has a very nice pair.

Anna Scott: But they're...they're odd looking, they're for milk, your mother has them, you've seen a thousand of them...What's all the fuss about?

William: Actually, I can't think of what it is, really. Let me just have a quick look...

*  *  *

Several months ago, I sat down in the Dana-Farber cafeteria (excuse me, the dining pavilion) with a man who I truly admire. He has bravely fought lymphoma, and has been doing great. In passing conversation and with absolutely no judgment or ill-will attached, he explained that breast cancer is like the “belle of the ball” because it gets more money and more attention than almost any other type of cancer. I had never thought of cancers on any sort of hierarchy before. And even though I know that he never intended that I feel like a snob, at that moment, I did.

I would be lying if I said that I don’t consider myself extremely lucky to be able to feel snobby at that moment—every day I am grateful to have had a type of cancer that can be cured rather than another kind that can't. But I can’t help but think about people who develop rare kinds of cancer, or those who have rare diseases that few people have reason to pay attention, or donate, to. I would bet that some of those people would love to attend a massive walk to raise millions of dollars for their disease. But even knowing that doesn't change the fact that I just don't want to walk on Sunday morning. I want to be home with my family. I want to take Annabel to her party at the farm. I don't want to drive into Boston and I don't want to be around breast cancer.

Several awesome, strong, and brave women and men that I know will walk on Sunday. Some of those women will be handed a sash that says, "Survivor." I am so proud of those women and of all they accomplished to wear that sash. And I'm finally comfortable admitting that I'm just not a sash kind of girl. Wasn't before cancer and wasn't after. It's in my genes, and it's probably part of why half of my daughter's wardrobe comes from her brother.

I just deleted a sentence that read, I know that these women who will walk on Sunday are much stronger than I am. In a way, I still think that they are. I also realize that if I argue that they are stronger than me because they walk, they could reply that I am stronger than them because I write. But I'm not. As Brian and I repeat to the kids all the time, It's not a competitionPeople are differentThat's it. And that's a good thing.

I've been trying to figure out why I've gotten so anxious about the breast cancer walk while I enjoyed the Jimmy Fund walk with very little anxiety. Maybe it's because I feel so safe in the walls of Dana-Farber. Maybe it's because at the Jimmy Fund Walk, it was sunny and warm and I didn't feel sick from chemo. Maybe it's because I have a more clear perspective a year later or because my anxiety medication really does help. Maybe it's because Teddy was at the Jimmy Fund Walk with me and we got to talk about the Red Sox, and because no one offered me a sash. Maybe it was because of the good music and good food or the fact that no one noticed me. Maybe it's because to me, breast cancer is just one type of cancer, and in the end, I want to eradicate all kinds, especially those that strike children.

Knowing me, I will feel some guilt after I post this or on Sunday morning while I drive Annabel to the birthday party. I'm certain that I will feel guilty every time I think about the CM boys wearing my name on their shirt despite that I won't even meet up with them to say Thank You. But doing what I want to do instead of what I feel like I should do is a big step for me.

This week, as I tried several times to collect my thoughts into words on the topic of the Making Strides walk, I realized that my idea of "me time" may not be anyone else's. Granted, I'm not going to help cure breast cancer on Sunday by going to a birthday party with kids and goats and chickens. But sometimes it's great personal progress to sit one out; to not let guilt ruin a trip to the farm with my little girl.