Compassion Fatigue

Back on September 28th, when I saw the "Tara" license plate as we set out on the last mile of the Boston Marathon Jimmy Fund Walk route, I remember my first split-second thought.

That is not for me. 

It was a strange instinctive response to such a coincidence, and I did not think it through at the time. I have, however, thought about it since. In fact, I have been waiting for the right moment to write about it. That moment is tonight.

After I crossed the finish line, joyfully shocked by the crowd gathered there, I spent a few minutes with my family and friends who had come into Boston to join the fun. One of those people was my amazing friend, Amy K.

I have used the term, "superpowers" before when describing my mother, so that should provide some sense of how much I mean by the term. Well, Amy K has super powers of her own. I would describe those powers as a true gift for giving. She gives so much to so many people that I would need a full book, never mind a blog, to scratch the surface of her goodness. Most amazingly, she does all of those things for all of the right reasons. She simply loves to help other people.

I will never forget talking to Amy that Sunday morning in Copley Square. She told me that her friend had a daughter with brain cancer. I remember it so vividly. Mostly because Amy once again centered me as to the real purpose of those miles and those dollars.

Amy went on to tell me that she needed another Team Tara shirt to give to her friend's daughter. Then she told me the daughter's name. Yep. It was Tara.

I felt the hair on the back of my neck stand up when Amy told me this. I don't even know how I responded or if I said anything. But in my head, I was back in the moment less than an hour prior when I saw that license plate.

That's not for me. 

It wasn't. I think it was for her.

*   *   * 

I met Tara W for the first time after work last night at a Boston hospital across the street from where I have been working on a long-term assignment. Amy, who had already visited Tara in the hospital the week prior, had arranged for the two of us to visit her again. See what I mean?! Superpowers.

Tara W was diagnosed with brain cancer in April 2012. At the time, she still lived in Oklahoma where she was born just 28 years prior. After experiencing headaches and a spell of severe disorientation just months before she was set to graduate from nursing school, Tara's doctors discovered a glioblastoma in her brain. Excuse my French, but I swear when I get really upset. And I know now that a glioblastoma is a fucking brutal type of cancer. Fucking brutal.

As one would expect, the news flipped Tara's world upsidedown. All of her plans were derailed. As she explains it, it was as if she became a different person. A sick person. A person with brain cancer.

Tara underwent brain surgery to remove the tumor. She then began proton therapy, which is similar to radiation therapy although it is more targeted so as to try not to damage surrounding brain tissue.

After chemotherapy and proton therapy were complete, Tara was feeling confident that she had beat cancer. After all, she felt well and she had managed to graduate from nursing school and earn herself the job she had always wanted. Everything was in place.

A few months after her therapy ended, Tara went in for an MRI of her brain. Her father accompanied her to that appointment. When the results were ready, Tara told him he could wait outside while she finished up. She expected good news. She got the very opposite.

*   *   *

Amy, Tara, Tara's mother (Joie), and I had a lovely hour together last night while the cold rain pounded the city. 

When it was time for us to catch our train, I wasn't ready to leave. I had discovered that Tara wanted to share her story but since that was not easy for her to do (her second brain surgery left her blind in her right eye and her medications make it difficult to type), I asked her if I could help. She enthusiastically said yes. I was honored. 

So we decided that I would come back to visit the next day (today) during my lunch break. 

This afternoon, I made my way back up to Tara's room. I was excited to see her and to help tell a precious sliver of her story.  

In the first 10 minutes I was there, a Dana-Farber fellow and a nurse paid a visit. Tara made only one request between the two of them. She asked the nurse for some water and some ginger ale. 

*   *   *

I am not sure that Tara would agree, but I felt an immediate connection with her. We talked about fun stuff, like her passion for running, and we talked about dark stuff, like the sheer terror we both feel when we see a friend relapse.

Tara told me about the day that her doctor in Oklahoma reported to her that her cancer had returned. Obviously, she was crushed. As she explained it, her positivity waned as she tried to comprehend the statistics of her disease. As she tried to process the fact that, according to clinical data, she would most likely be dead in a few years. Surprisingly, I didn't cry when she told me this. I think that is because I honestly could not (and cannot) comprehend such injustice.   

I am working on a draft piece about Tara that we will share once she has had the chance to review and revise it. This is not that piece. This is merely an introduction to this brave and lovely person. And it's something else. Join me as I take an abrupt left turn. 

*   *   *

Tara is confined to her hospital bed until she has a seizure. She has been having terrible and mysterious seizure-like episodes for a while now and the doctors are observing her around the clock to figure out why. Tara's thick, dark hair is parted this way and that to make way for the wires taped to her scalp. The wires feed into a screen next to her bed that tracks her brain activity. 

During my lunch break, I sat in a chair at the foot of her bed (padded on the bed rails in case she has a seizure). Actually, for the first few minutes of our conversation, I sat to Tara's right side, where the chair had been placed, until I remembered that she could not see me out of her right eye. When I moved to face her more directly, I could tell she was relieved. I felt terrible that I had not thought about that immediately upon sitting down. 

As we talked and I typed some notes, I noticed that Tara was squinting uncomfortably. The shades to the room were closed but a few beams of sunlight were streaming in through the holes where the strings stretched through. I got up to try to fix the problem.  

"No, no, it's okay. It does this every day but it doesn't last long," Tara explained. 

"But it must be really annoying to have the sunlight right in your eye," I said. 

"Yes, it is, but it's okay." 

"No, it's not," I insisted stubbornly, as I searched around for something to block out the sun. I found some paper and we moved it around on the window until we found the holes that were causing the problem. 

"I just need to get some tape," I explained, as I headed out to the nurses station. 

When I approached a nurse, she looked at me as if I was terribly intrusive. I could see that she was examining my badge, which I forgot I had on. (It is a Harvard Medical School Consultant badge so I can see partly why she would have been confused.) I explained that I did not work at the hospital, that I was just visiting a friend. But that did not ease the tension in our conversation. 

I went back into Tara's room without any tape. 

A few minutes later, the nurse who had visited earlier -- the one from whom Tara had requested the water and the ginger ale -- came back in. She was no doubt agitated by my request for the tape. 

"Why are you putting tape on the windows?" she asked, full of judgment. 

I explained. The sun was behind a cloud at the time, and I wished it would come out so she could see it shining in Tara's eyes.  The nurse looked at me blankly. 

I explained some more. I showed her that if we just blocked out a small part then it wouldn't be in Tara's eyes. But it was clear -- the nurse had no interest in helping. 

Before she left, the nurse eked out an explanation that we could move the bed to avoid the sunlight if it got bad again. She said something about the camera that was focused on the bed so they couldn't move it too much. But she didn't care and it was painfully obvious. It was even more painfully obvious that Tara was far too selfless to call the nurse back into the room the next time the sun came out. 

When the nurse left, I unloaded. I was pissed, and told Tara why, and she smiled. I tried not to get distracted for too long and a few minutes later, we continued with our prior conversation. It's cliche, but true -- we laughed and we cried together for the next half hour or so. And I dropped several f-bombs along the way. Because seriously ... cancer is so fucking awful. 

When Joie arrived a while later, I couldn't help but unleash my wrath about the nurse and the sunlight and the complete lack of compassion. Tara doesn't ask for much and this lady can't even help tape a piece of paper to the window?!? Joie agreed, while entertained by my passionate venting. 

I left the hospital full of emotion. Admittedly, that emotion was somehow funneling itself into one issue -- the nurse and her complete lack of compassion. 

When I got back to my office, I had a bit of panic when I realized something. The nurse had never brought her water or her ginger ale. 

I texted Tara to ask if the nurse had brought it yet. 

She didn't lol, was all she texted back.  

*   *   *

I truly believe that nurses have incredibly difficult jobs. They take care of fragile people, and I have already written about how complex fragile people (including myself) can be. Everyone knows that nurses often work long shifts and that some are overloaded with patients. I get all that, not by first hand experience, I admit, but by careful observation over the last few years. 

In a text later tonight, Tara explained that she thinks many nurses have "compassion fatigue." I couldn't agree more. And I don't think nurses are the only ones who suffer from that. I saw it in teaching, I see it in lawyers, and I see it out in public (like on the train, for instance). It's hard to be compassionate all the time. It's hard to care constantly about another person's needs. But that's no excuse. Tara's nurse should have given me the f-ing tape and if her compassion is too fatigued for that, she should find another job. Period. 

I know I have high standards and I know I have my mom to thank (nope, not blame) for that. But we have to do better for those who are fragile. We have to. We have to tell them that we care enough that we do not want them to have to squint uncomfortably even just for ten minutes every day if we can do something to avoid it. We have to find the tape and hand it over with a smile. A young woman with brain cancer deserves that. 

*   *   *

The news that Tara's nurse had not, two hours later, brought her the water and ginger ale boiled my blood, and I sent Tara several repeated emoticons to express that. 

In response, Tara sent me a photo to make me feel better. Joie had found tape in the room and had taken matters into her own hands. 

*   *   *

In trying to decide how to wrap up this lengthy post, I was reminded of the card I brought Tara last night. I usually think greeting card messages are inadequate but this one was perfect. The outside had a cartoon of a big dark cloud and a person on a ladder trying to wipe the cloud away. The front said something like, "If I could, I would take away the dark clouds..." The inside had a bright sun and said something like, "And give you a sky full of sunlight." I wish I could do that for Tara and for countless others. But I can't. None of us can. 

Nevertheless, we must try. We must not excuse compassion fatigue. Sure, this high standard sounds difficult to meet and sometimes, it is. But in my experience, it's usually pretty darn easy to find the tape and cover up the little holes, or bring a glass of water and a ginger ale when your patient kindly requests it. I mean seriously ... brain cancer is naturally complicated. But compassion doesn't have to be. 

FRAGILE: HANDLE WITH CARE (Part Two)

About a month ago, Brian reminded me that the lease on his pick-up truck was up. We had no idea what to do about it, but we both agreed on two things—we wanted a safe and reliable car, and we did not have a lot of money to spend.

In my experience, buying a car is painfully painful and no amount of Herb Chambers quotes on the expressway is ever going to change that. So I knew this wasn’t going to be fun. I just never anticipated the hardest part about it.

When Teddy got wind that we would be trading in “daddy’s twuck,” he immediately began to bawl his eyes out. “I don’t want to give away daddy’s twuck!” he wailed. My heart kind of hurt inside.

I asked him why he was so sad about the truck.

“Because I don’t wike when fings change,” he cried.

I was completely taken aback. Mostly by the fact that my son could articulate such a profound thought. It took me years to figure out that change was the source of so much of my angst. I had a bittersweet tinge of pride (and guilt) that my six-year-old had already discovered this.

I tried to calm him down by telling him that things change all the time and that change can be fun. He insisted that he didn’t like change. That he wanted daddy to keep his twuck. I repeated to him (and to myself) that it was only a car.

Last night, Brian and the kids traded in his truck for a used Toyota Camry. I was not with them for the final change-up, but Brian said it was a bit of scene—Teddy weeping pathetically (and Annabel copying), “Bye bye daddy’s caw.” They can be so dramatic sometimes.

Personally, I love the Camry. My grandma had a Camry (not a great selling point for my 34 year old husband, I do realize). But Camrys are solid, safe cars and I like the way they drive.

In fact, Brian ended up calming Teddy down at bedtime a few nights ago with the crazy realization that if we take good care of the Camry, it may be Teddy’s first car one day. Teddy liked the thought of driving in ten years, although I was completely overwhelmed by it. Not because time flies or because my kids seem to be growing up so fast. But rather, because sometimes, thinking any further beyond today can seem like far more than I am able to handle.

Fragile.

* * *

Yesterday at my lunch-time appointment with my oncologist's PA, Danielle suggested that I check the lump in my neck just once a day. That seemed like a brilliant idea and I decided that I would feel my neck one time every day—when I get off the train after work. For many reasons, I decided that would be the easiest time to face the nightmare.

As I climbed over the catwalk at the train station tonight, I felt my neck. For some reason, however, I chose not to press down enough to get a really good read on it. 

Still, I'm pretty sure it was there. 

I kept climbing.

I tried to push out the darkness. Tragic stories of diagnosis and death. The pain endured by good people I know or had heard about—healthy-looking cancer patients—with the fucking disease in their blood or lungs, brain or pelvis, liver or bones. The sheer terror of metastatic disease. The injustice of it all.

Handle with care. 

*   *   *

While on the way to pick up the new car last night, Brian and the kids called me. Teddy was upset and Brian was telling him about how it was only a car and how mommy and daddy weren’t going anywhere. 

For a split second, I wished he hadn’t said that.

* * *

When I arrived at Dana-Farber yesterday at 12:28 for my 12:30 appointment, I found a large crowd of people waiting in the elevator bank. One elevator was broken and I had never seen that space so busy. 

As I waited, surrounded by people in masks and wheelchairs, I became agitated. Where were the f-ing elevators? It was as if only one of the six was working and when it came by, there were so many people who looked sicker than me that I obviously let them go ahead. But as the minutes ticked away, I got more and more frustrated. I was late for my appointment. I debated walking up nine flights of stairs. Finally, over ten minutes later, I made it up to the breast oncology floor. Fragile and flustered. 

By the time the nurse took my vitals, I was shaking.  

My blood pressure was normal but when my temperature registered at 95.9 degrees, I had a rush of panic. The nurse asked me if I had had a cold drink. I hadn't. This is it, I thought to myself. My body is failing me. 

The nurse never said anything else about the low temperature and I was too terrified to ask any questions. So I took my seat back in the waiting room and did the only thing I could do to feel better. 

I wrote. Fragile. Handle with care. Part One.

*   *   *

Now it's Part Two, and time that I make an actual point. 

I know that telephone systems go down and that elevators break and that nurses know way more than I do about when it is necessary to panic. I know all of that when I'm being rational. When I'm not cracked and on the verge of breaking. 

But when I'm fragile, everything changes. A missed call is disasterous. A downed telephone system is utter abandonment. A ten-minute elevator back up feels like five torturous hours. A temperature just a few degrees off is the beginning of the end. 

I realize, if only in part, how hard it must be for people to work with those of us who turn up in such a fragile state. I realize the energy it must take to say the right thing, to handle us so that that we don't break even though we may feel broken. It can't be easy. Indeed, empathy can be hard work. 

*   *   *

At first, I did not understand why Teddy cared about the truck. "It's just a truck," I told Brian carelessly. 

"It's more than that to him," Brian explained. "It's how he knows I'm home. It's what makes him feel comfortable." Well shit. Good point. 

So I'm trying to be better—more understanding. 

It's just a truck. A short delay in a phone call. A back up at the elevator. A few unexplained degrees. 

Something that, if handled with care, could be absorbed.

Or something that, if handled roughly, could make all the fragile little pieces fall apart. 

FRAGILE: HANDLE WITH CARE (Part One)

Sometimes I think we would all be better off if we could emit a signal when necessary as follows:

FRAGILE: HANDLE WITH CARE.

I needed that signal this morning. I needed everyone who came into contact with me to know it. That I was fragile. To handle me with care.

It started before 7am when I became terrified of a lump in my neck.

I had felt the lump for weeks but since I had been nursing a sore throat, I figured it was just a swollen gland. I didn’t worry too much about it, which is to say that I worried about it often but in a way that was not completely debilitating.

I hadn’t assessed the lump in a few days and because I had expected it to be gone, when I found it still there, I freaked out. I rushed to Brian who was heading out the door to school. "Do you feel it?" I asked him.

He did. He told me I should call the doctor this morning. My legs felt weak and my stomach felt nauseous. It had been a while, but I had a keen memory for that feeling.

Dr. Bunnell’s office opens at 7:30am so just after that, I dialed the number. The answering service picked up, one I had not heard before, and I left a message. I tried to compose myself to say hi to my dear friend and Annabel's morning babysitter (Kendra) and to say goodbye to my little girl. I didn’t last five minutes before I fell into a heap of tears on Kendra’s shoulder.

On the commute into work, I called Dr. Bunnell’s office again. Just in case the answering service did not work properly. I left another message and made sure my phone ringer was on its highest setting.

When I got to my office and set my phone on my desk, I noticed that I had missed a called from “Unknown” (Dana-Farber). How could that be? How did I not hear it ring? I may have cursed out loud because I know that missing that call meant I would need to place another call and wait for someone to respond. It would be at least another hour.

Soonafter, I heard the ding of a voicemail and I listened to it. The nurse said that should would call me back in five to ten minutes. I was so relieved.

I checked my phone ringer again. It was on and at the highest setting. Just to be sure, I tapped into the little grey Settings button to make sure that the phone would ring through to me. Everything indicated that it would.

With my phone by my side, I did my work. Fifteen minutes later, when I had not heard back from the nurse, I checked the screen. Another missed call and voicemail from Unknown. My heart sank. How could this happen? Why did it not ring through?!? I wanted to cry. I listened to the second voicemail. The nurse explained that she had one appointment open but I had to answer unless I would not be able to be seen today. I almost lost it.

I tried calling the main number for breast oncology again but it rang through to the outside answering service. I told the man that I had just missed a nurse’s call and that I needed to get in touch with her immediately. He said that they were having technical difficulties and that he was not able to get a message through to the doctor. I asked him how that could be. “How am I supposed to reach them? I need to reach them.”

He was silent. “Um. I don’t know what to tell you. There is nothing I can do. We are having technical difficulties.”

I am not often rude, but I had no ability to edit. “Well that is something they really need to fix!” I asserted before hanging up on him.

I tried the main number again. Answering service. 

I tried again. Answering service. 

I was in full-blown tears by now.

I tried the number once again. Someone answered, and by her introduction, I could tell that I had not been switched into the outside answering system.

I tried to compose myself enough to tell her that I was trying to get in touch with a nurse. The woman referenced the nurse’s last name so I knew I had made progress. She said she would call me back. I gave her my cell (again) as well as my office phone number. I explained that I was having issues with my cell phone so please try the second number if the first did not work.

I sat, my office door closed, crying and waiting for the nurse to call back. Less than a minute later I glanced at the phone screen to see a message: “Missed Call – Unknown” It seemed like a cruel joke. The phone never rang.

Thank goodness, the nurse had tried the second number and I picked it up before the first ring even ended.

I explained what I was feeling in my neck. The nurse seemed sure it was a swollen gland. She said I could come in if I wanted to have it seen. I did. Better yet, I so deeply didn’t, but so definitely did at the same time. I took the 12:30 appointment. And so I sit and wait.

Wanting to warn everyone around me...

Fragile. Handle with care.

*   *   *

I wrote the post above while seated in the waiting room at Dana-Farber this afternoon. I re-read it in the exam room and published it a few minutes before Danielle came in to see me. 

When Danielle felt my neck, I could not contain my sheer terror. I cried. I knew that I would so I hadn't even bothered with eye makeup this morning. 

Danielle felt the lump and explained it felt like an enlarged lymph node. She asked me when I first felt it. I cried more. 

Danielle explained that it is normal for a lymph node to swell when the body is fighting an infection. I explained that I had not been sick for a few weeks. "Why would it still be swollen?" I asked. Danielle explained that it could take that long for a node to return to normal size. That my body may still be fighting the infection even after I feel better. 

Ultimately, Danielle suggested that we wait a week. She scheduled an appointment for me next Wednesday although she expects that the lymph node will decrease to normal size by then. If it is still enlarged, she will order additional testing. 

Sometimes it seems like the Intruder is stuck in my basement and will never go away.

My Ship

I have a ship. Not a literal one (way too much money and work), but a figurative one. Usually I’m uncreative and call my ship, “My Ship.” But sometimes I call it, “My Life Boat." (And that's only slightly witty.)

Here’s the deal with My Ship...

First, I get to pick who travels on it with me. No one else’s opinion matters. I decide. Just me. After all, it is my ship.

Before I sound rude, let me assure you that you have a ship, too, even if you don’t know it. Yes, you have your very own Life Boat! You can fill that boat with whomever you want, you can paint it any color, and you can name it something completely ridiculous if that makes you happy. After all, it is your ship.

You may ask, “What exactly does this ship do?” It's a good question, and the answer depends on whose ship it is. Because different ships travel to different ports and set sail in countless different seas.

Another thing about My Ship is that I am the captain of it (and you are the captain of yours). Better yet, let me back up. 

As babies and as kids, we are not ready to captain our ship yet. So others steer it for us. Sometimes they teach us exactly how to steer for when it's our turn. Sometimes we learn from their mistakes.

As adults, however, we take over at the helm. Sometimes we need to call in relief because everyone needs to rest. But still, as the captain, we choose who will steer when we are too tired or to sick to steer ourselves.

The best part about being the captain of our own ship is that we pick our co-captains, our crew, and all of our guests. Sometimes we allow someone onto the ship and later realize that he/she is far too much like a pirate. He/she would be better off on someone else’s ship, or maybe floating in the ocean alone. If we’re brave, we kick them off our ship...with a life jacket, of course, but there is no room for pirates where we are going.

I came up with this ship idea when I got cancer. I have no idea what made me think of it, but over the last two years, I have thought about who I would want on My Ship. Who is a disguised pirate? Who would just drag the boat down, or slowly poke a hole in its bottom? Better yet, who would I ask to help me navigate? Who would make my trip more joyful? More purposeful? More…full? I have lists in my head.

Here's another thing -- some people care a lot about what their boat looks like. In some ways, I do, too. I want my boat to be clean and strong, safe and comfortable. But I don’t want a yacht. I can see why people like yachts, but still, I’m not the yacht type.

I love to think about My Ship. I make decisions about how to spend my time based on My Ship. My Ship has brought me clarity and comfort.

My Ship, like all ships that leave port, has sailed through rough seas and, oftentimes almost simultaneously, has sailed alongside spectacular sunrises. It has cracks and patches and parts that creak. As I said, that happens to any ship that heads out into the open sea. And that is why we better load our boat with the right people, the right maps, and the right motivations. Because we only get one boat. And one awesome journey into the sunset.

Ice Buckets, Pink Ribbons, and Defining "Awareness"

Annabel is obsessed with Batman. Like obsessed. A few weekends ago, she dressed in her full Batman costume and ran up the street to see Teddy who was playing street hockey with a bunch of his neighborhood friends. When she came back all hot and sweaty, I asked her if she wanted to take her mask off. "No!" she yelled. "Then they will know it's me!" Oh honey, trust me, they know it's you, I murmured quietly to myself.

Yes, Annabel dressed up as Batman for Halloween last year and she will dress up as Batman for Halloween again this year. Despite the “no character” rule at her pre-school, she innocently wears a Batman shirt or socks almost every day, and when her best little friend recently asked her who her favorite princess was, Annabel responded, “Batman.” 

Annabel hates pink, and once when I asked her why, she explainted emphatically, "Batman nev-o we-as pink!" She had a point.

Teddy is ambivalent about Batman, although he smiles at his little sister’s Batman-related quirks. It’s a sincere, sweet smile that makes me want to hug him and never let go.

Contrary to Annabel, Teddy is happy to wear pink. He’s acquired a good number of breast cancer related t-shirts and he sports them without a second thought. In fact, last night he went to bed in this, completely unaware of the fact that I had already drafted the beginning part of this blog. 

As the photo indicates, Teddy has a quiet love of the pink ribbon. He sleeps next to the pink ribbon blanket that my friend, Lynne, knitted for me after my diagnosis and whenever he colors a picture, it almost always includes a pink ribbon. Even after two years, his pink ribbon drawings always catch me off guard. What do they mean to him? I wonder. Maybe I should ask. 

*   *   *

This will be my third October since being diagnosed with the disease to which the month now seems to be dedicated. The first October after my diagnosis, I embraced all the pink. At the time, I felt nothing but (1) fear (I would begin chemo that month and, on October 31, have my terrible reaction); and (2) gratitude (any and every display of support for breast cancer felt life-saving-ly personal). 

Last October, I was so distracted by the weight and complexity of ending my infusion treatments that I didn't pay as much attention to Pink-tober. I just kind of went with it. 

This year, however, I have been noticing each and every pink ribbon. And there's no doubt, I've evolved in my thoughts and feelings on them.

Now when I see “October pink,” I am not immediately grateful (nor immediately anxious). Instead, I am curious. How much money does the NFL donate to breast cancer research or patient care when its teams are decked out in pink? When the Prudential building lights up pink, how much does that electric bill cost? Could the money be better spent elsewhere? What kinds of conversations are parents having with their kids who, for the first time, become aware of all the pink and begin to ask questions? Do they struggle like I do with how much truth is too much? What does a lung cancer patient feel about the month? Or a patient with a rare form of sarcoma? Is the former bitter that few know that November is lung cancer awareness month? Is the sarcoma patient deflated by the reality that there may never be a month dedicated to that disease?

*   *   *

What is “awareness” anyways and is it useful if people do not move beyond simply knowing? The question is not new to me. In fact, at the end of last summer, I heard a lot of chatter on this topic when the Ice Bucket Challenge lit up social media.

Brian, the kids, and I participated in the Ice Bucket Challenge early on and when I posted our video as my brother-in-law had instructed me to do, I figured that no one would understand what the heck we were doing and why we were doing it. But Brian and I had lost a friend to ALS just a few months prior and we were immediately drawn to any effort to help spread the word about the horrific disease. 

To be honest, Brian and I didn’t do the Ice Bucket Challenge within the 24-hour time frame that was prescribed and we didn’t make a donation to the ALS Association, either. We recently had donated to our late friend’s foundation and we felt that we couldn't afford any more. Even typing that, however, I wonder if we should have donated, or if we should donate now. Maybe we missed the whole point of the Ice Bucket Challenge. Or maybe not.

While Facebook exploded with videos of adorable kids and famous people dumping ice water over their heads, I noticed a post by the friend of a friend. This woman had lost her mother to ALS and she explained how hard it was for her to see people laughing and enjoying the Challenge while she knew all too well the disgustingly tragic reality of the disease. She was fair and balanced and sad in her post. She did not suggest that people should refuse to participate in the Challenge. She just wanted to share her perspective on it. She wanted to remind people that ALS was not fun or cute. It was a brutal disease that had stolen her mother's pride and her presence.

I remember thinking how brave this woman was to post what she did; that she would probably get crap for being a "downer" on an otherwise uplifting social phenomenon. But I thought then and I think now that posts like this woman's are at the heart of real awareness. And quite impressively, the Ice Bucket Challenge had paved the way for that sort of information to be shared. The Challenge had inspired people to ask questions, to learn more, and to donate money to a cause they otherwise may not have considered. Sure, maybe some people just dumped the water on their heads and uploaded the video. But others went one step further. It's that one step that is key.

To me, this October, well-intentioned displays of pink are nice, much like the Ice Bucket Challenge was entertaining. But real awareness involves having the courage and taking the time to learn about the stories that leave us thinking rather than just smiling.  

When it comes to being more aware of the realities of breast cancer, I would strongly encourage you to read Lisa Bonchek Adams' blog linked HERE. My friend and fellow survivor sent this to me yesterday and while it was extremely difficult for me to read, I'm glad that I did. Ms. Adams deserves her voice to be heard. Like Pete Frates does. 

To me, awareness doesn't end with ice buckets or ribbons or even donations to a good cause. 

Awareness is about listening. 

Listening to Lisa Bonchek Adams explain what it feels like to live with a disease that is likely going to lead to her physical demise. 

Awareness is about learning. 

Learning from Pete Frates' #ALSfunfacts which he posts on his Facebook page, including this one -- 

#ALSfunfact #1: My salivary glands do not regulate amount of saliva that enters my mouth. I use a suction machine 20-50 times a day...fun!

Or this one...

#ALSfunfact#4: For two years I have needed a grown man to fully dress and undress me head to toe. Every. Single. Day.

Awareness is about seeing beneath the surface. 

Seeing that advanced stage breast cancer does not always look like a bald woman at the supermarket. Instead, it may look like a woman with a full head of hair asking the store clerk to pack the bags lighter. Awareness is about knowing that a cancer patient's bones start to break once cancer has metastisized there. And that people with ALS don't take salivary glands for granted. 

Ultimately, awareness is about lightening another person's burden.  

And the awesome thing is that that can be done anytime, including while soaking wet from ice water, while wearing pink in October, or even...while dressed as Batman.

Photo Finish

This past summer, I sent query letters and sections of my book to at least 25 literary agents and publishers, most of whom intimidated me simply by the fact that they live in New York City. I never heard back from the majority of them, and I didn’t hold my breath that I would...with one exception.

The exception was a small and innovative press in Boston that I felt was the perfect fit for my book. Even better, a friend of mine knew the press's founder and publisher (“Agatha”), so I thought I had my foot in the door, or at the very least, the tiny nail on my pinky toe.

I spent countless hours working on my submission to Agatha and her colleagues. When I didn’t hear back after several weeks, I emailed my friend to check in. She touched base with Agatha and reported back with good news—Agatha hadn’t had a chance to read what I had sent her. I was pleased with the not-a-No. 

A few more weeks passed by, and when I still hadn’t heard anything, I emailed Agatha again, with a new and improved query letter and the same attachments I had sent her before (Preface, Part One, and Epilogue). I was being "softly stubborn," as I like to say; I just wanted Agatha to read my stuff. If she reads it, I thought, I have a chance. Okay, I admit, some of the time, I felt that I had more than just a chance. Every now and then, I thought this was going to be it.

On August 9th, two years and one day after my diagnosis, I was playing golf with Brian, my dad, Sean, and Teddy at my family’s annual tournament on Cape Cod. It’s the one day of the year we get to see dozens of cousins and second cousins from my dad’s side and I look forward to it all year long. 

As we bumped along in the clanging golf cart up the fairway of a long par four, I checked my email. My heart leapt into my throat when I saw a message from Agatha. Brian drove along scooping up all the drives that were shorter than his and I tried to keep my phone steady enough that I could read the long-awaited email.

Although the first paragraph had some positive feedback, it was clear from the tone that this was a big fat No. I felt awfully disappointed not only at the final answer, but at the justification, too. I didn’t want to show that I had just received crappy news on such a beautiful day so I just kept smiling and swinging and sneaking re-reads of the email. When my family started giving me crap for all of the attention I was suddenly paying to my phone, I told them about Agatha's rejection. I played it off like I didn’t care but it was abundantly clear that I did.

When we got back into the cart after putting out a team par, Brian asked me what Agatha had said. I gave him the gist—my situation was “too perfect” (aside from the cancer) and as a result, readers would not be able to relate to my story. Agatha wrote: 

In this case, the story is straightforward (which is a simplicity that is beautiful in many ways), and the conflict, from what we can tell, is just the cancer itself. It seems as though you have a perfect family – husband, parents, siblings, in-laws, a mother with deep connections and an incredible ability to be a resource (she sounds amazing), great and supportive friends. A dream scenario for handling a nightmare. All of this is extraordinary for you as a person, of course, but most people don’t have such perfection in their lives when dealing with a crisis, and I wonder if this is relatable for the average person. Further, you seem like a remarkable, principled, balanced individual who has exceptional clarity on her priorities and on things that others might struggle more with, like losing their hair (“I never cared much about my hair”) or breasts (the lack of hesitation about the unavoidable mastectomy). In addition, things that are incredible for you – living in Boston among the world’s best healthcare providers, having a mother with superpowers who is able to instantly navigate and find you the perfect doctor, pay for the extra lab tests, etc., a tendency to be able to rely on your gut for making decisions – all mean that another thing your memoir might do (instruct others trying to figure out the same things without the same luck or advantages), it doesn't seem to.

The words stung a lot on that 15th hole back in August, and through the 16th, too. But by the 17th hole, I was feeling much better. If my gut instinct and all of the good people in my life mean that Agatha doesn't want to publish my book then I am fine with that. It wasn't the right fit after all. I didn't dwell on it, and despite my typically abysmal putting skills, I drained a long putt on the last hole for birdie.

*  *  *

After walking 25 miles last week, I was sore, but it wasn't as bad as I thought it would have been. My feet were swollen like a pregnant lady's, and I had a heat rash all over them which made wearing any type of shoe terribly uncomfortable. My hips and knees and butt hurt, the backs of my knees were so tight that I basically had to shuffle, and the blisters on my heels were by no means cute. By Wednesday, however, I was almost back to normal, and feeling amazed at the resiliency of the human body. It was around then that Brian told me that he had a plan for the upcoming weekend. 

"We're going to walk the rest of the walk on Sunday morning," he asserted. "Just that last mile, with the kids."  

I thought the idea was very sweet and I told him that I would love to do it. 

Saturday was a packed with activity and at one point, I suggested to Brian that we not bother driving all the way into Boston to walk that last mile. But he said we were doing it; that he had already arranged a cab to pick us up at Copley at 9am to bring us back to our car. Given his thoughtful planning, I dropped my case immediately and agreed that it would be a lot of fun. 

We set out for Boston around 7:45am Sunday morning—Brian, Teddy, Annabel, me, and Buckley (Sean and Lauren's puppy who we watched for the weekend while they were away).

As we were stopped at a traffic light off the exit of the expressway, I looked over and saw a big white SUV that I recognized. "Brian, that's Erin's car!" I exclaimed.

"No, it's not," he said matter-of-factly.

"Really, it is! See look, that's Erin!"

I was so excited to see my friend that I took out my phone to text her. As we continued straight on Melnea Cass Boulevard, Erin's SUV turned right past Boston Medical Center and I couldn't really see her. I watched her turn and then I noticed her sister, Katie's car in front of her. I was so excited about this amazing coincidence, mostly because we were on our way to do the rest of the walk and Katie and Erin's participation in the walk and everything leading up to it had meant so much to me.

Over another text, I told Katie a shortened version of how great I found this coincidence. She explained that they were all headed into a brunch for her dad's birthday. Given that between them, Katie and Erin have six girls under six years old, I wished them good luck at the brunch and a happy birthday to their wonderful dad. Then I put my phone away and we drove on.

I didn't expect to be giddy upon reaching the place where I collapsed a week prior, but I was.

833 Beacon Street. Just at the bottom of a hill, the Citgo sign poised over it. The whole scene looked so much more peaceful a week later, probably because I was no longer faint and mortified with embarassment. 

Brian pulled into the first spot on Beacon street, just a bit beyond 833. When he put the car in park, we both noticed the license plate of the car parked in front of us. This was it. 

No joke. Nothing planted or arranged. That car just happened to be parked right there. The coincidence felt almost magical. Seriously, what in the world are the chances?

We backtracked 50 yards or so to 833 Beacon and took a few photos. It was way more fun standing up than lying down. 

The mile walk up Beacon and Comm. Ave. was so much fun. Buckley was crazy cute (or perhaps, crazy and cute), as were the kids as they tried to walk him. We passed by the Buckminster Hotel, which seemed particularly fitting given the puppy we had in hand. 

When we took a right on Hereford Street, I yelled up to Brian who was just a bit ahead of me, "Wow, we really were close, weren't we!?" He agreed that we really had been close the week before. Something about that realization made me proud, and something else about it stung a tiny bit.

I got choked up as we walked up Hereford. I remembered back to the signs I saw all along the side of the road along the Newton hills—"Right on Hereford. Left on Boylston." I remembered how much pain I had been in at that point; how much each and every step hurt and how when I started to feel sick, I had wished someone would have rolled me to that "right on Hereford."

Now, here I was, a week later, with my husband and kids, feeling so very blessed, and not caring in the slightest about how dorky we all must have looked wearing the same t-shirts.

As we approached the Finish Line painted on Boylston Street, I couldn't help but feel even more giddy. I was surprised when Brian wasn't as excited as I was. He didn't even want to stop and take a picture, insistent that the Jimmy Fund Walk finished in Copley Square, which was just a block ahead. I forced Brian to stop and take a picture of me and Teddy at the finish line. Then he hurried on and we caught up. 

The first out-of-the-ordinary thing that caught my eye was the Jimmy Fund Walk sign at Copley. How great! There's even a sign left from last week! I thought to myself. Then I saw the purple shirts and I heard cheering.

I burst out into grateful, happy tears, shaking in shock and disbelief. It was the most incredibly pure and beautiful surprise—friends and family and even Dana-Farber / Jimmy Fund Walk staff gathered at the finish line to celebrate the last walkers (us) crossing the finish line. 

It is still impossible for me to describe how much it meant to me that Brian thought to bring everyone together in this way, that my family and friends worked together to execute the surprise, that Kirsten and Helen traveled back from New Jersey again to be there, and that friends packed up their young kids to come into the city early on a Sunday morning (it wasn't Erin and Katie's dad's birthday, Brianne isn't getting any less pregnant (yet), and Kristin had a huge medical appointment the next day). Perhaps the cliché, "It meant the world," sums it up best. Because the meaning felt (and feels) that big.  

I didn't gather a team to walk part or all of the Boston Marathon route so that I could prove that I could endure 26.2 miles. I gathered the team because I want cancer patients to receive excellent health care and have hope for their future. Thanks to the generosity of our 106 walkers and hundreds of other donors, Team Tara has now raised over $70,000 for the Jimmy Fund. Those numbers make me proud. And, to a lesser (but still significant) degree, so does the fact that I walked the marathon route last week.

I did not write this blog so that people can read about a "perfect ending" to the walk. First, I do not believe in "perfect," and second, in many ways, I do not believe in endings. Especially when there is still so much work to be done.

* * *

Maybe this blog has all the weaknesses that Agatha pointed out in my book. Maybe the monumental thoughtfulness of my family and friends makes the story of my 26.2 miles unrelatable. If so, it's not that big a deal, mostly because I think it can be valuable to read about stories to which we cannot, at first or even ever, relate.

Today after work, I ran over to Dana-Farber so I could see Kristin for her chemo infusion. I had so many different emotions while sitting in a "caregiver" chair in an infusion suite where, for a year, I had been the patient. Admittedly, I felt some guilt over the fact that as far as we know, Herceptin worked for me when it didn't work for Kristin. (Why?) I felt some anger over the fact that Dana-Farber had made a mistake earlier in the day that caused Kristin understandable distress on an already extremely stressful day. (We must make sure that never happens again.) And I felt blessed to be able to sit and enjoy the company of friends despite the unwanted company of advanced stage breast cancer. 

Maybe my story looks "perfect" to Agatha and others—my exceptional family, friends, and doctors; a completed walk; a potential cure. But inside, I know one thing for certain. I just happen to be wired such that when I see people feel pain, I always seem to feel it, too. And that means that my story can't be perfect until theirs is. 

"DNF"

In my head, and on paper, I had three goals for the 2014 Jimmy Fund Walk: (1) gather 100 walkers who otherwise would not have done the walk; (2) raise $60,000 for the Jimmy Fund; and (3) walk the Boston Marathon Route -- 26.2 miles -- with the friends and family who had joined Team Tara.

I had kept Teddy abreast of my progress every step of the way (Annabel is still too young, oblivious, and totally focused on her obsession with Batman to care). Teddy and I were both thrilled when, just last week, our team reached the 100 walker mark and passed $60,000 in funds raised. I was so proud of our dedicated and scrappy team, and I loved all that my son was learning about setting goals and having fun while working to achieve them. 

On Saturday night, however, in his typical pre-bedtime, completely overtired state, he started to cry. He was worried that I would not be able to finish the walk. I have no idea what caused him to get so upset about it but I was able to crack some jokes with him (at Brian's expense) and he fell asleep easily after that. 

Yesterday, after having walked 25 miles, I lay on my back replaying that conversation in my head. I told him not to worry about me; that I was tough and that I'd walk those 26.2 miles no matter what. Well, chalk that up to the long list of lies I've told my children. Because yesterday, I was not able to cross that finish line. 

When my family arrived to pick me up at mile 25, Teddy was hysterical. (Annabel was faking a whine to copy her big brother but really she was smiling, happy to see me and Brian.) Teddy sat next to me on a stoop on Beacon Street, the Citgo sign up a hill to our right, and hugged me tight. "Are you okay?" he asked me at least 12 times. 

"I'm fine buddy!" By that point, I was. And so I explained to Teddy the truth -- that sometimes, when I get really tired, I faint, and that I had to stop walking because I almost fainted. I still don't know if I should have told him all that, but I did. He was still wildly unnerved and I felt terrible about that. I also felt embarrassed -- mostly by the scene we made on the stoop, and by having thought that I was physically able to do something that I proved unable to do. 

On the way home, I lied again. When I couldn't hold back the tears, I tried to turn my head so that he wouldn't see. But he did. I told him that I had drank so much water that my eyes were watering. Dear Lord, what the hell was I thinking? This poor kid is going to be so confused. I better clear that one up today...Yes, I will do that. 

To be honest, I don't know exactly why I cried so much on the ride home. I think it was partly out of disappointment and embarrassment that I hadn't finished, and partly out of guilt that I had inconvenienced people the way I had. I hadn't been able to connect with friends and family in the last leg of the walk and at the finish line and I was also bummed about that. 

On the first leg of the walk, a few of my dedicated teammates mentioned what it would feel like to reach the finish line. "I honestly haven't even thought about it," I told each of them. I really hadn't. But on the car ride out of Boston, I did think about it. I thought about how awesome it would have felt. I was sad to have missed it. 

When we got home, the kids went out to play with their friends. Brian and I showered, and just sat for a while with my mom, my Aunt Helen, and cousin, Kirsten. It had turned into a gloomy night and none of us had the energy to turn the lights on. So we sat in a mostly dark house quiet and down. 

We dwelled in that gloomy place for a bit, until somehow, we got talking about all the people that walked that day. I told them about all the people I walked with for the first 13 miles -- about how I had met each of them, about all the new things I had learned about them, about how truly good they all were. I told them about a teammate who had joined and walked despite that she has been battling a terribly scary condition that has kept her largely confined to her house. I told them about Brian's hockey players who walked 13.1 miles together, and about my neighbors and other friends who joined us at a point in the walk when we all really needed fresh energy. I told them about the kids who had joined our team -- kids who have already given back more to this world than most people ever will. I told them about how great it was to see my friend who walked with her sister, and about their mother who walked five whole miles despite being in the middle of treatment for advanced stage breast cancer. We talked about all those who pushed strollers along the bumpy sidewalks and about my brother (who hates the heat) who carried his new puppy the whole way, while trying to corral our children. We talked about my kids' teachers who walked with their daughters and helped with our kids, too, while others left to tend to me. We talked about my uncles, cousins, colleagues, former colleagues, hockey friends, high school friends, college friends, CrossFit buddies, former students, fellow cancer survivors, and other dear friends who all wore their lavender shirts and walked together to help end all cancer. We cried a bit, laughed a bit more, and after some left-over pizza and a huge bowl of my most favorite dessert in the world (chocolate trifle -- thank you, Amy!) I, for one, felt so much better. 

We put the kids to bed it good spirits. Teddy didn't even cry. 

One person who wasn't able to walk yesterday was my best friend, Brianne. She is at the end of her second pregnancy so she helped with all sorts of things behind the scenes and her amazing husband, Seamus, covered the 26.2 miles for their family without seeming to break a sweat. Brianne made a surprise visit last night and she, Brian, and I sat and chatted about the day, all unable to move without groaning. I know that Brian is disappointed that he didn't get to finish and I know he will do it next year. But Brianne and I agreed that in 2015, God willing, we will do the 13.1 mile route. I'm already excited for it. 

A few astute friends of mine have reminded me of the quote I chose for the back of our team t-shirts. (In case you're curious, the white ribbon represents friendship.)

As I lay there yesterday realizing that I wouldn't be able to finish, I found such comfort in that message. Such real, sincere comfort. Because I know that over 100 people that I care so much about came together yesterday to fight -- with generosity and hard work -- for cancer patients. For me, that is what this was all about to begin with. 

The embarrassment and disappointment I felt yesterday fell away last night with a solid eight hours of sleep. What is now left is a heart so full of gratitude and appreciation that I tear up when I think about what we all achieved and how much fun it was to achieve it. 

Speaking of tears, tonight I plan to clarify with my innocent and misled six-year-old that I did cry on the way home yesterday and it wasn't because I drank a lot of water. I'll explain to him that sometimes we set goals that we don't achieve, but that often, there are awesome stories, inspiring teams, and terrifically strong individuals behind a "Did Not Finish." Most likely, he won't care much about my little life lesson, and he will just want me to play basketball or catch with him. But I think he'll store the clarification in a safe place, and that's the perfect ending for me. 

212 degrees

Anyone who is my Facebook friend undoubtedly has not been able to escape the fact that I am doing the Jimmy Fund Walk in 19 days. I admit, I'm kind of obsessed with it. Sure, I'm naturally inclined to over-enthusiasm, but this bout of it is serious.

I've restrained myself from writing about the walk here because I never want this space to be about money and I thought that if I wrote about the walk, it could start to feel like a solicitation. But tonight, I can't hold back. For the record, however, this post is not meant to request donations. This post is simply about the "c" word; not the "c" word those boys yelled from the blue Nissan Maxima on my 33rd birthday, but rather, the "c" word that rhymes with "pure." Yes, folks, this piece is about "cure."

*  *  *

One of my favorite books is a tiny little book that I stole from my mom. It's called, "212° - the extra degree." It's one of those books you would find near the cash register at a store full of cute gifts, one that I usually pick up, skim, and put back down.

The book begins by explaining that at 211 degrees, water is hot, but at 212 degrees, it boils. As the authors explain, this metaphor "reminds us that seemingly small things can make a tremendous difference." I believe that, both for good and for bad, and I believed it long before cancer. Cancer, however, has shown me nuances of this metaphor that I never before knew existed.

I have been working on a blog about the difference between "curable" cancer and metastatic cancer for over a year. I chip away at it, then I fail, and then I start over. Weeks later, I chip away some more and then I think that everything I've written is stupid and I delete the whole thing. I don't know that I'll ever finish that post, so I'll just write this lazily imperfect one instead. Because I have things I want to say even if I can't find the perfect way to say them.

First, let's set the facts straight. For all that my doctors and I know right now, I have been cured of my cancer. That means that it is possible that my cancer will never return and I will live to be 100. Even as I type those sentences, I force myself to go back over them. Cured of triple positive breast cancer. That would not have happened ten years ago. I know how lucky I am. I also know that luck can change.

I have written about friends of mine who are battling metastatic disease. This means that their cancer has spread throughout their body and that as of today, there is no cure. These friends include women who were in treatment when I was and women who were years out of it. It includes friends with the f-ing HER-2 protein on their cancer cells and friends who were HER-2 negative. Lest I underestimate the power of recent developments, I must acknowledge that there are great medicines that can shrink tumors and drastically slow their growth elsewhere. But there is no way to rid these bodies of cancer for good. 100 years old is not a possibility for them. At least, not yet.

I often think about the 212° book in a context one may not expect: sure, it sucks to have faced cancer up close -- that's 211° of a whole lot of shitty-ness. But metastatic disease? Well, that's 212° of scorching hell. Not all the time, I hope, but far too much of the time.

I cannot speak for people with metastatic disease and it would crush me to read blogs and other pieces that they have written. For this reason and others, I will make my goal tonight small -- I will write about just one reason that I think it must be so indescribably hard to battle metastatic disease.

It must be so hard because we do not live in a culture that focuses on the present moment. Sure, we can find people and classes and places that emphasize it, but mostly, we are surrounded by a much more future-focused culture -- one where we plan months or even years in advance, where we "look forward to..." and "hope the day goes by fast." Focusing on the present moment is kind of like trying to eat well -- it's possible, but we constantly feel like we're fighting the tide.

People with metastatic disease do not have the luxury of plans like others have. They don't have the luxury of floating with any tide. Instead, they have to struggle to stay in the present moment -- the only one they know is guaranteed -- because future moments feel (and perhaps are) dreadfully uncertain. I lived in this dark, dark world for a short time -- five weeks, to be precise -- before I learned that my cancer may actually be curable. Those five weeks felt like sheer torture. No matter how far away I get from that time, and no matter how rosily revisionist I can be in my memory-making, I will never forget that terror. And I will do anything I can to help people who have to live in it for the rest of their lives. Or until we find a cure.

I will walk 26.2 miles on September 21st because I want the peace that accompanies hope to replace the terror that accompanies uncertainty and worse, the inevitability of cancer over-taking the body. I want Dana-Farber researchers to reach (or contribute to others who reach) a cure for metastatic cancer -- not just breast cancer, but all cancers. In the meantime, I want Dana-Farber to provide the very best care for patients and family members who walk through their doors. I chose the Jimmy Fund Walk over other walks because Dana-Farber focuses half of its mission on research and half on patient care. I like that split. Because I know how scary it is to walk through those doors and I know how much relief comes with hope.

Yesterday morning, I walked eight miles -- a laughably short distance to prepare for 26.2. I woke up this morning so sore that I skipped my morning workout. As my hips and knees ached all day, I was reminded that 26.2 miles is not going to be easy for me or for anyone on our team who has set out to do it. But I also know that it's a small thing I can try to do to dial back the 212° of pain that metastatic cancer patients endure every day.

Ultimately, I know I've become more than a little bit obsessed with this walk. But maybe that one extra degree of obsession is just what we need. Maybe we're at 211° and at 212, we cure cancer.