After a Long and Difficult Day...

When my mom and I arrived in the foyer of the Dana-Farber parking garage yesterday afternoon, she asked me a question, probably just to make sure I was okay enough to talk. "Should we go to the third floor and cross over the bridge or just walk outside?" She was referencing the footbridge that crosses over Jimmy Fund Way connecting the older Dana building to the newer Yawkey building.

On a normal day, I make that decision in a split second based on whatever I'm feeling at the time -- the need for fresh air or perhaps the desire to stay dry and warm. But yesterday, the question stumped me. It seemed like the most difficult question I had ever had to answer. In fact, I couldn't even muster up a decision. I muttered to my mom that I didn't know, fighting back tears. By my response, she knew that the simple question had overwhelmed me and I'm sure she wished she could take it back. Instead, she confidently chose the footbridge and we kept moving forward.

I lost my composure in the waiting room of the imaging center. Weeks worth of fear, anxiety, anger, and frustration (both for myself and for others who had been there), erupted out of me in the form of tears, boogers, and maybe even drool, all before I could fill out the first question on the clipboard they handed me. My mom took the clipboard and filled it out for me while I sat in the chair next to her holding onto a paper cup of water as if it were an oxygen mask on a plane going down. I signed the paper where my mom told me to and I scribbled the date, which I remembered only because it was easy -- 3/3 -- and because "3" is a special number to a special person I know.

It would be impossible to explain how scared I was while I waited to enter the room with the MRI machine. I took an Ativan as instructed and that helped, but still, my mind conjured up all sorts of terrible images. For instance, the cabinet in the prep room was labeled "Contrast Reaction Medication." As I stared at the IV in my left arm, the passageway through which they would feed the solution to make the images possible, I hoped to a higher being that my body would not react to that solution as it had reacted to the Taxotere. I wondered if the team of angels from the Yawkey building could make it to Dana in time to help me like they did last time. I prayed that, if necessary, they could, or that the Dana building had its own team of angels.

The MRI itself was not as bad as I thought it would be, probably because the waiting before and after were so comparatively awful. Since the techs were imaging my breast (or, better yet, the tissue around it), I lay face down with my boobs positioned in two openings and my head resting through a hole like I've seen on massage tables. My arms were above my head and my right hand held the alarm that the tech told me to use if the contrast caused me any pain. He explained that I should use the alarm if I needed to, but that if I did, they'd have to stop the test and I would have to come back another day since they couldn't insert the contrast twice. That warning was all the motivation I needed to stay completely still for the duration of the test; there was no way I could deal with another day of waiting.

And so for 30 minutes, I listened to countless variations of banging and clanging. In the brief periods of respite, I heard music through the earphones the hospital provided. The tech had even asked which Pandora station I wanted them to play over the earphones. I obviously chose Bruce Springsteen, but "Dancing in the Dark" was the only Bruce song that came on in that whole 30 minutes. I found the chorus incredibly ironic as I stared into the darkness and tried with all my might to stay still.

When I was done, I realized how tired the Ativan had made me. I remember only bits and pieces about the rest of the night. I remember being really hot after the test; trying to put back on my jewelry while my hands shook. I remember waiting for our car in the valet area as I sat upright with my eyes closed. I remember an older woman next to me explaining to her companion that she only tips the parking attendants at places that she plans to return to. "I worry they'd remember me if I didn't tip them and they'd do something to my car next time." In my dazed and exhausted state, that perspective nevertheless caught my attention. What a miserable way to live life, I thought to myself, too tired to say anything to the woman directly about how ridiculous she sounded. Cancer patient or caregiver or whatever, people really shouldn't be stupid.

*  *  *

This morning, as I waited anxiously at home for my results, the phone rang from an "Unknown" number. My stomach dropped, my adrenaline rushed, and I answered. Slowly and seriously, an older sounding woman asked to speak with Tara Shuman. Gulp. 

"This is she." 

The woman sounded extremely serious as she said, "Good morning," and gave her name. She sounded like she had bad news to deliver. I almost threw up. "I am calling from the Democratic..." I snapped out of my panic. 

"Do not call me! I am waiting for very important test results and I thought you were my doctor and you just scared the Hell of me! Do not call me again!" I screamed, like I have never screamed into the telephone before. 

"Should we tryback later today?" She couldn't be serious. 

"No! Do not call me back today or ever! I told you that already!" I clicked the phone off with force, and, perhaps, a tinge of guilt. In retrospect, it's kind of funny that some loyal Democrat experienced the wrath of me-in-waiting. I bet she gets some interesting reactions from potential donors but my reaction this morning was probably one she brought up at the lunch or dinner table later today. 

A few hours after that, while my mom and I anxiously waited on the sofa watching Frozen (I'm not too proud to admit that no kids were home...), the real "No Caller ID" rang on my phone. I picked up. 

It was Danielle, the Physicians Assistant from Dr. Bunnell's office, a kind woman with whom I've grown very comfortable. "The MRI was clean," she explained with a smiling tone. I started to cry, which probably terrified my mother until I gave her the thumbs up to indicate it was a happy cry. She started crying, too. I fell to my living room rug and sat there shaking and trying to listen to everything else Danielle was telling me. 

There's no doubt that the clean MRI was a wish come true. But I should know by now that cancer is not usually so black and white. Danielle explained that the MRI looked at the tissue in the breast. "But I don't have any breast tissue, right?" I asked once I had collected myself. 

"Right. So it looked at everything around the left implant. And we didn't see any nodules or any evidence of cancer. That's a very good thing." I wished she could have stopped there, but there was a bit more. 

Danielle explained that MRIs provide excellent images of tissue but this one did not look at my chest wall or at the bone. I had been under the impression that the test was going to tell all about the pain in my left breast area. But I was wrong. "If the pain persists for another few weeks, we can do a CT scan or an X-ray and see if there's anything in the chest wall or anything wrong with the bone." My chest hurt more as she spoke. 

Of course, the news was good news, very good news, and I don't mean to downplay that. I know what tonight could have been and I am blessed by today's result. At the same time, the result is a reminder that expecting black or white answers in the Kingdom of the Ill is often a mistake. In that land, life exists in shades of grey...and I don't mean the 50 Shades kind. 

Most of us inside or outside the Kingdom of the Ill crave answers, numbers, and results. We want a Yes or a No, a Positive or a Negative; something definite; a plan. But for good or for bad, we often don't find such certainty. No matter how many tests I undergo to try to relieve myself of the anxiety of "feeling cancer," I'll never know for sure that those deadly cells are not lurking inside me. I'll never know how or when I'll die, and that's not because I'm a cancer patient or a cancer survivor. That's just because I'm human. 

But I'm a control freak so I need to focus on a few things that I do know. And I know that I'm surrounded by people who give me hope and faith in the human spirit; family and friends who show me, by example, what it means to be resilient and strong, what it means to care. I have a mother who tells me that "we will get through this together," and who instinctively takes the clipboard from me when I'm too weak to hold it and too teary to read the questions. I have a husband who keeps everything at home perfectly normal even when we both feel like we're living in a bad dream. 

Life and death are, undoubtedly, full of unknowns. But there are some knowns, too. For instance, even yesterday, in my post-MRI, exhausted and dazed state, I realized with great clarity this -- that every time I leave Dana-Farber, it's with a person who overtips the parking attendant because even after a long and difficult day, it makes him or her feel good to smile and be kind to another human being. Period. End of story. 

Detoured

I'm scared. No, I'm not just scared. I'm absolutely terrified. I know why, yet I don't know why. I know what helps, yet I can't help it. It feels like a full time job just to stay in control of my fear and so far, I've been able to do it. But it's not easy. Even if it looks like it is.

It's not easy because I remember August 3, 2012 as if it were yesterday. That's particularly odd because I've lived a lifetime since then. But I remember it so vividly. I remember driving home from Kristin's house after having visited her at the beginning of her treatment. I remember drinking a glass of water in her kitchen and telling her how strong she was. I remember watching our little boys play together and peeking in on her newborn as she slept comfortably in her bed.

I remember coming home and thinking to myself, Why her? Why cancer? And I remember thinking, If it could happen to her, it could happen to me. I had never done a breast exam so I decided it was time. Brian was oblivious to the fact that I was feeling around my own boobs while sitting on the sofa next to him.

When I felt the small lump, I had a rush of fear. But I still felt somewhat entitled at that point in my life, so part of me tried to be rational, to explain the fear away. There's no reason you would have cancer, I told myself. But there wasn't any reason Kristin would have it, either. There's no reason why so many people get it.

Three-hundred and twelve blogs ago, I found out that it was, in fact, cancer. That was the first time that it truly hit me that my life could change in one day, one doctor's appointment, one test result. I wasn't entitled to anything. I could get cancer just like other innocent people could.

*  *  *

Over a month ago, I started to become obsessed with a pain I was having underneath my left implant. I thought about the pain all the time, wrote about it in pieces I never published, and talked to my oncology team about it twice. Danielle put in an order for a chest X-ray but I decided to take ibuprofen on a routine basis for a week and see if my chest still hurt after that. It didn't, and so my fear subsided. I had a good stretch of not feeling any sort of pain that I twisted in cancer. It was a stretch of a few weeks, at least. Then came February 14th; the night I heard that my friend, Kristin's cancer had returned.

As I've written about before, this news crushed me. It crushed me as a friend, as a mother, as a sister, as a wife. It crushed me on an unselfish level and it crushed me on a completely self-centered one. In some ways, Kristin's recurrence strengthened my faith, but in other ways, it completely leveled it. On the leveled end of that spectrum existed that nagging pain in my chest. Almost hand in hand with Kristin's news, my pain resurfaced with a vengeance.

I know what almost every person reading this is thinking. If the pain came back when you heard of Kristin's news than obviously your pain is all in your head. Trust me, I have told myself that approximately two million times. But fear is not rational. Fear is the most terrifying thing of all.

And so I've found my mind wandering to dark places. Places that paralyze me for a few moments. Places that make the hair on the back of my neck stand up.

On Sunday night, I broke down to my mom. I cried like it was August 2012. She listened and told me she understood. It's incredible how those two words -- "I understand"-- can be so comforting.

My mom also told me that I should get the pain looked at. "I'm too scared to," I explained. I was. Far too scared to know if what I think I feel is really what I think I feel.

I fell asleep that night with puffy eyes, and so sad that cancer tormented people like it does.

By Tuesday morning's commute to work, I was so sick of being so worried that I decided it might be time to take action. When the thought came to me that I could take action and not be alone, I decided that it really was time. I got to my office, shed my winter layers, and immediately called my oncologist's office to take them up on the X-ray offer.

Dr. Bunnell decided an MRI would be best. The first available appointment was this Monday at 4pm. Quivering, I agreed to take it.

I know that what I'm going through now is a tiny, tiny fraction of Kristin's recent journey. I even worry that publishing this piece could be interpreted as a cry for help when others deserve it so much more than I do. But I decided to publish this anyways to show how one person's story can feel so inextricably linked to another's. Because maybe my story is to another person like Kristin's story is to me. Because I am haunted by my thoughts of two summers ago. If it could happen to her, why couldn't it happen to me? It's hard to digest the reality of the type of cancer we share. No one knows that better than Kristin does.

Before my diagnosis, I knew that my life could change in an instant. But cancer showed me just how that could all play out. What I've been through and what I've seen others experience has showed me how quickly one path can detour into another. It's that knowledge that makes the thought of next week so scary, or rather, so absolutely terrifying. Because more than I could ever rightfully explain, I want to get a clean result on my scan next week. But so did my friend. And for reasons we may never understand, she was instead detoured into a fight that no person should ever have to face.

Entitled

Entitlement. The fact of having a right to something.

Right. A moral or legal entitlement to have or obtain something; that which is morally correct, just, or honorable.

Huh. Seems a bit circular to me.   

*  *  *

I know that there are places in the world where people don't feel entitled to anything. They don't expect to be able to drink clean water or use a toilet. If they can't see, they don't expect eye glasses and if they get sick, they don't assume there are medicines that can save them. They don't feel entitled to write or speak or even think freely. They don't assume they will grow old or die peacefully. Unfortunately, they know better than all that. 

I also happen to have been born in a place where people do feel entitled to these types of things; where people feel entitled to life, liberty, and the pursuit of happiness. I grew up thinking, albeit, subconsciously, that I was entitled to childhood and adulthood, to love and companionship, to children and to growing old. How lucky I am to live in a place where I expect these things; where I believe that it is morally correct and just that we receive them. How very, very lucky. 

Cancer, however, has a way of altering all expectations and assumptions. Fast. A diagnosis can hit us smack in the face (or the breast) with the reality that we all may be crazy fools who feel entitled to anything. Especially time. 

Kristin's recurrence has shaken me to the core for more reasons than I have it in me to explain tonight. Part of it involves entitlement. Entitlement to certain clinical outcomes, to medicine doing what it's supposed to do inside our bodies. Entitlement to days, months, years. Entitlement to milestones for our marriage, our children, and their children. Entitlement to time. 

What has happened to Kristin is not just. The chemo and the Herceptin should have worked. The cancer should not have spread. I have great hope for my friend's future and faith in the fighting spirit she has shown particularly this past week. But she shouldn't have to go through this. No one should. 

And that's why entitlement is such a tricky concept. Because I want to live in a world where every man, woman, and child feels the right to a long and healthy life. Yet I've felt the pain that comes with the realization that what was once expected is actually just a gift not yet received. I also know the freedom that is scattered (albeit it, very rarely) in that pain -- the oddly comfortable and even remarkable freedom in the realization that what was once expected is actually just a gift. 

Not yet received. 

Never Undone

On February 13th, I realized Valentine’s Day was fast approaching, and I had a novel idea for my husband of almost eight years. “We should go out to dinner!” I suggested with great enthusiasm before he left for work on Thursday morning. Brian laughed, like I was nuts, but he agreed that dinner sounded great.

When I got to my office and clicked into OpenTable, I realized why Brian had laughed at me—my idea for a Valentine’s date wasn’t so novel after all. There were no reservations to be had unless we wanted to eat at 10pm and by then, I’d have gnawed my own jacket off and fallen asleep with an upset stomach. When I also realized that our babysitters would all be booked, I accepted that dinner out with my Valen-time (as Annabel calls it) wasn’t going to happen.

“Take out and TV?” I asked Brian while following up on Thursday night. He thought that sounded great so Thai food and Winter Olympics it would be.

After the kids were in bed, Brian left to pick up the take out. I hadn’t finished my work for the day so his trip was the perfect opportunity for me to do that. When he texted me that the Thai place was packed, I thought, “Even better! I needed more time.” I didn’t want to hurt his feelings though, or discount his patience in waiting for the food, so I texted back a more thoughtful answer.

An hour and a half later, Brian still wasn’t home.

“You find a hot date?” I texted to him. He never responded. I started to worry, and peered out the front window. Brian’s truck was parked in the driveway still running.

I figured he was talking to one of his fellow coaches about hockey, and I was relieved that he was back safe. I decided to leave him be and if I got hungry enough, I’d go out, grab the food, and get started on our romantic meal.

A few minutes later, the front door opened. Brian came in, put down the paper bag of Thai food, and burst into tears. Brian does not cry easily or often so the next five seconds were some of the scariest I have ever experienced. What had happened? What awful news had he heard? Forever scarred by Scott Herr’s tragic death, my first thought was that one of his players had been in a car accident. I had the split second thought of, Oh God, how will everyone get through that again? But it wasn’t that.

My mind raced a bit more until he was able to get the words out.

“It’s Kristin,” he said. And I knew. Our friend’s breast cancer had returned.

For a split second, I felt relief; relief that everyone was still here. Relief that Kristin was still here. But that split second of relief was fleeting.

Brian sobbed something about her liver. I could barely stand up.

Brian carried me over to the sofa, the place where we had cried together several times about my own cancer. We sobbed some more, Brian in control of his tears, and me, not at all. 

For the next few minutes, I wailed like a maniac; a crazy person that I never knew was inside me. "No! No! No! This can’t happen. This didn’t happen. No!”

I kicked and shook and cried some more. “Why? Why? How? No! It can’t be right. This can’t be happening.”

Brian let me throw my fit. I'm pretty sure he was crying too much to stop me. He just hugged me.

A few minutes later, he told me to stop. “This isn’t about us,” he explained. “This didn’t happen to you. You know that right?” I thought I did, but I wasn’t sure.

Kristin has been a special friend to me through my cancer journey. It was because of her cancer that I found my tumor, and after my diagnosis, she essentially mentored me along the crappy path of surgery and chemo.

But Brian was right. In my instinctual effort to try to process what had happened to Kristin, I started to get my situation mixed up with hers. Brian helped bring me back. This wasn’t about me. This was about our friend and what she and her family were going to have to endure.

* * *

I have debated whether or not to write about Kristin here. She told me I could, but I still didn’t know if it was the right thing to do. On the one hand, part of me feels that I’m in no place to tell the small fraction of the story I know about this beautiful person and about what she and her family have been through this last week; that telling just a piece of that reality is somehow disrespectful of all of the other parts that remain untold. Part of me feels that if I focus on my own perspective—if I write about last Friday night in my house and how I have felt since hearing her news—that I’m putting my far less significant experiences before Kristin's far more important ones.

On the other hand, however, Kristin and I have a lot more in common than a family that we love and a brutal kind of breast cancer that we hate. We both believe in facing the truth no matter how hard that can sometimes be. 

The truth is that I don't know what Kristin is going through right now. Curable cancer and metastatic cancer have some things in common, but they have lots of differences, too. I don't understand all of those complexities, but I do remember the five weeks I spent wondering how far my cancer had spread inside me; feeling it in my head, my neck, my lymph nodes, and even my knee. I haven't forgotten those excruciating days prior to my first surgery; the diagnostic tests and the torturous sound of the phone ringing with a result. I haven't forgotten how hard it was to suddenly face my own mortality, and how painfully I loved the people I love. I don't know what Kristin is going through right now, but I've tasted a fraction of it and it's indescribably awful. 

Maybe I shouldn't write about Kristin here. Maybe this blog will crush a patient who is peeking out of her cancer cocoon, or cause panic in a survivor who doesn't want to hear that the war she thought was over may need to be fought again. I get it, because since last Friday, I've often felt crushed and panicky, too. 

But if there is one foundation this space is built upon, it's truth. And the truth is that no one's individual story exists in a vacuum. Each one of our stories is intertwined with someone else's story, at times, temporarily, and at other times, so much so that they could never be undone. 

Go World

When I was in elementary school, I was convinced I was going to the Olympics. I had, after all, won a race or two at my school's field day so clearly there was a spot waiting for me on the U.S. track & field team. Plus, I could do a back handspring so obviously that meant I'd be a two-sport athlete at the Olympics -- adding gymnastics onto my sprinting feats. Sure, there would be some quick costume changes, but I was sure I could handle it. It was, after all, the Olympics; one of the most spectacular events in the whole wide world.

As I got older and realized that it took more than some backflips and blue ribbons at field day to reach the Olympics, I knew Olympic gold wasn't in my future. At that point, I fell in love with watching the athletes who dedicated their lives to their sport. The opening ceremonies would bring me to tears, especially when it came to displays of peace and freedom (Um, North and South Korea walking in together in 2000? Amazing.) and Bob Costas became my first man crush (no eye infection will keep him down!). Once I met Brian, I had even more fun watching the opening ceremonies because he would imitate the stadium's announcer when he introduced each nation in three of four different languages, which was really just the same word with different accents. I laughed every time.

When it came to the sports, I could watch anything (except ice dancing) and find it interesting. Even curling. Yes, curling. You ever try to scrap something really hard? I did yesterday when I tried to get Sharpie off of the play table. It's not easy, and it gave me a whole new respect for curlers.

Of course, I remember the last Olympics, the Summer Games in 2012. I watched NBC every early morning for weeks prior, just so I could countdown with Al Roker to the Games. I loved every minute of the anticipation, although I could have dealt with a lot less of Michael Phelps, and I always felt such disappointment when I heard stories about corruption and mistreatment behind the scenes of the preparation.

Despite my lifelong love of the Olympics, however, this year I've felt differently. It's not because of my fear of bombs made from toothpaste, or because I've been too busy and distracted. I feel differently because the Olympics were, for me, when it all began; on August 3, 2012 while watching some Tivo-ed and some live summer events. When I found my lump.

Now, it's a year and a half later. The Winter Games have rolled around and I'm still here, despite that back in August 2012, I wondered if I would live to see another Olympics. Physically, I feel great, and mentally, I'm in a pretty solid place, too. It's been weeks since I've felt any pain that I've twisted into cancer and that break has allowed my anxious mind some much needed rest. But still, it's been hard for me when I see stuff about the Olympics, even when its Bob Costas telling me about it.

And so I've sat here wondering where this post will go next. Some wallowing in how stupid cancer ruined the Olympics, perhaps? Nah. That'd just be letting cancer win.

So let's talk about winning, and I definitely don't mean the Charlie Sheen kind of "winning" (he so ruined that word). Rather, I mean the beating-cancer kind of winning. And, come to think of it, the Olympic kind.

When I used to watch the Olympics, I used to marvel at the fact that so many athletes would say things like, "I've worked my whole life to win a gold medal." I believe them, but I think that's incredible. They worked their whole life for gold. It's so very focused of them.

In that framework, some of the stories didn't end well. Take Michelle Kwan, for instance (not that I ever heard her say that her career was all about gold). Nine-time U.S. Champion, five-time World Champion, but never gold in the Olympic Games. The media loves to spin these kinds of stories as tragic. But from what I've read of Michelle Kwan, at least, she doesn't seem to think of it that way.

Which brings me back to cancer. What does it mean to "beat cancer"? What does it mean to win against the disease? My thoughts on the topic have evolved a lot since the last Summer Games. Back then, the meaning was very simple -- Don't die from cancer. The URL of this blog came from that thought and that thought only. Cancer would not kill me.

I still believe (most of the time) that cancer won't kill me. But nevertheless, I have a whole new understanding of what it means to "beat cancer." Believe it or not, it has nothing to do with cancer. I won't give that stupid disease the satisfaction.

To me, someone can beat cancer and die from it, too. In fact, my concept of beating cancer is indescribably more difficult to achieve than the traditional concept which, for most, involves getting all the cancer cells to go away. Because to me, beating cancer, like, really beating it, takes more courage and love than I could ever explain. It takes more than sitting through a whole bunch of treatment, and trust me, that's not easy.

I've seen with my own eyes several people who have done it; who have won over cancer in the way that I mean "win." One of those people was Mary, or "Julia" to some of my loyal readers. Yes, Mary died of breast cancer. But breast cancer did not kill her. Even in her last days, with the help of her loving family, Mary kept her dignity, her grace, and her inner strength. Even when she couldn't sit up and was coughing up blood, she exuded beauty and peace. She loved her children, her husband, and her God, and she cared for all of them in the most loyal of ways. Mary beat cancer, even if her obituary says otherwise.

I've seen other people beat cancer like Mary did, and also, thank goodness, in the literal way, too. I've seen a twenty-something cancer patient become an oncology nurse on the floor where she was treated. I've seen a kindergarten teacher teach all week and then head into Dana-Farber to receive her infusions after school on Friday. I've come to know a young mother who adopted a third child and powered through treatment for a recurrence to earn the coveted "cancer free" status one year later. I've made a incredible friend who had cancer while continuing to work and make sick kids' wishes come true (literally). I've met an awesome fellow blogger who has told me that his cancer will come back and when it does, he'll beat it again. And I've talked with a young woman who wrote that she's never felt more loved, or, in a strange way, been happier, than she's been while in the thick of a battle against triple positive breast cancer.

Some people could claim that this post suggests a theme of, "It's not whether you win or lose but how you play the game." That's not what I mean at all. What I mean is that even if my cancer were to return, and, heaven forbid, if it was something that my body ultimately couldn't handle, I still expect to win.

In the mean time, I'll tackle smaller slopes, starting, perhaps, with recording the opening ceremonies and watching it this weekend. I admit, cancer almost took the Olympics away from me. But tonight, at my keyboard in my 70% clean house, I've realized that neglecting the Olympics would be letting the disease win. And as I've said before, that, I refuse to do.

So, in the words of Visa, Inc. and Morgan Freeman...Go World.

Beat Cancer.