The Recurrence Rut

When I taught, my classroom was full of interesting quotes on bright pieces of colored paper. I loved those unassuming bits of genius and felt like we all were better by being surrounded by them.

On the first day of school every year, there was one quote that I pointed out to my students. It was printed on a homemade, taped-together banner of yellow paper at the front of the room, which made it by far the biggest quote in the room.

I never attributed the quote to anyone and I always tried to gloss over the fact that I was the one who made it up. To be honest, I don't even really know why I thought that quote was the most important one of all, but I did.

Everything is what you make it. 

That was the quote. Not that quote-worthy, you think? Maybe not. But when I explained to my students on the first day that my class, like so many things in life, would likely end up being whatever each individual decided to make of it, I often felt glimmers of understanding in the audience.

Not that I think I can provide myself my own therapy right now (although I sure wish I could), but nevertheless, I decided to return to that quote tonight. I really just wanted to write another blog about how much it feels like torment to wait and feel cancer and spend so much time and energy being scared of an imminent demise. But I don't know that this space can carry the weight of another blog with that theme so I figured I'd try out a different route...perhaps, a slightly more positive (and hence, shorter) one.

It's strange to reach back in time and grasp on to something that I believed in so much then. It's odd to try to convince myself that if I thought something a decade ago, I could convince myself to think it again now. Maybe it's strange because now seems so very different than a decade ago.

But 24-year-old-me was right -- everything really is what you make it. And unfortunately, this very fact has me stuck in a terrible rut.

I know you know my rut; it's the I-think-I-feel-a-recurrence rut. It's a really shitty rut.

The problem is that when you think you feel cancer, you really do feel cancer. Any ounce of fatigue cannot be explained by the fact that I get up early and go to bed late, but rather, it's only explanation is cancer. A pain in my chest is not soreness from exercise or scar tissue from surgery, but rather, it's a deadly tumor. Any anything is precisely what I make it and in this rut where I feel cancer, anything is, indeed, just that.

I know that the MRI should have lifted me from this rut. I so wish that it had. But I feel what I feel and I need an answer that the MRI just did not provide. I need an answer because until I get one, everything is going to be what I make it. And for some reason, I can't seem to make anything in my mind except for evidence that my cancer has returned.

I have never been so frustrated. I have never been so disappointed in my own inability to be strong and positive, and in my own failure to have faith and hope. No contrived optimism, no quote, no song, no blog, no therapy session, no nothing has been able to lift me out of the recurrence rut in which I'm stuck. So on Wednesday afternoon, I'll head back into the Dana building for a CT scan of my chest. It took me almost two weeks to get the courage up to reach that point. But even at the bottom of my recurrence rut, I somehow scraped together enough guts to place a call to my doctor and to pick up the phone when "No Caller ID" rung back to book the appointment.

The Intruder

Imagine this.

You live in a house. The house is modest, sometimes messy, but mostly clean. It’s nothing special to strangers, but it’s special to you and to those who love you.

Your family lives in the house. They eat in a kitchen full of snacks and memories. They sleep in bright bedrooms with blankets and plenty of pillows. They watch movies and play games in the living room. They fill the house with laughter.

Imagine this.

Your house has a basement. You go there sometimes—to do laundry and play knee hockey. To exercise and to store the holiday decorations.

One night, hours after your family is fast asleep, you hear a strange noise in the basement. You assume it's probably a mouse, because there's no way anything bigger than a mouse could get in. (The bulkhead is always locked and an intruder couldn't fit in through the one small window.)

You’re too scared to check and too thoughtful to wake your spouse. You lie awake, and listen, and pray the noise stops. 

It doesn't. Hours later, you are still shaking. You know someone is down there.

You call the police. They are the ones trained to face intruders. The police arrive in relatively good time. They inspect the basement; go straight to the origin of the strange noise. 

The police have bad news.

An Intruder has been living in your basement, likely, for years. The Intruder slept right beside where your kids played hockey. He ate breakfast near the boxes of Christmas ornaments. He bathed where you washed your family’s clothes. The Intruder lived in a dark space beneath those bright rooms where your family snacked and dreamed and laughed and played. 

You had no idea.

Worst of all, the police inform you that the Intruder is trained to kill. Despite that you've never seen him, he has been stockpiling an arsenal of weapons. Big and dangerous ones. You don't understand how this could happen. You still don't even know how he got in. 

The police explain that they can’t extract the Intruder just yet. Even as you speak with them, the Intruder listens on from beneath the floor planks. You’ll have to continue living here with him for a while, they explain. When the time is right, you will help us wage the battle against the Intruder. If all goes well, he will be gone forever.

When the time is right, you do as you are told. 

There is damage after the battle—some broken picture frames, some holes in the walls. But you know that the Intruder has retreated. 

Unfortunately, you’re not the only one. Intruders have lurked in a few of your neighbors’ houses, too. You watch those neighbors battle and you help each other whenever possible. 

Finally, the Intruders are gone. The police warn you that the Intruder could return, but odds are that he won’t. If he does return, the police warn, he’s likely back for good. He will make his home, once again, in any room he likes, and, once again, he’ll start to build up his arsenal. The police tell you that they can help slow down his deadly stockpile, perhaps even to a pace so slow that it's barely dangerous for quite a while. But he will be there. Lurking beneath your every footstep. While you try to live your life in the house you love. 

Nevertheless, you celebrate. The Intruder is gone, at least, for now. Thank goodness you heard the noises.

For a while, you are safe. Scared, because it happened; betrayed, because you still don't know the Intruder's route in; thankful, because so many good people helped you fight him off.

Time passes. Your house is full of laugher during the days, just like it was before. But at night, you lie awake. Listening for noises.

One night, you hear them; the sounds of an arsenal being assembled (not that you know what that sounds like). Or maybe you hear nothing. It could be mice. Or it could be the Intruder building a bomb. 

You want to call the police to check, and one time, you do. They come and tell you that they checked one corner of the basement. The Intruder wasn't there, they say. 

You want to feel relief. But did you check everywhere else? you ask. 

No. Did you want us to? 

I don't know, you reply. Because you really don't know. 

*  *  *

I have no other way to explain why I still want to delay a CT scan of my chest. This is my best attempt. Cancer really is a vicious and relentless Intruder. Even if he's gone. 

Fight Like A Bulldog

When Annabel sees me for the first time in the morning, she gets so excited that she jumps up and down before she hugs me and kisses me and tells me she loves me. I feel the same way, and given our giddiness, an outsider would probably think that we hadn't seen each other in months, when, in fact, I tucked her in just about ten hours before.

Teddy, on the other hand, is a different story. Teddy groans his way out of his room in the morning and asks, "Where's Daddy?" as if I am worth something to him only if I know that answer.

"He's at school, buddy, just like every morning," I explain, disappointed that he can't muster up any love for me. Teddy's next question, at least, in the past few months, is either, "Can I go to his practice wif him today?" or, "Can I ride the bus wif him to his game?"

Obviously the first thing on Teddy's mind when he wakes up in the morning is his daddy's high school hockey team. Every now and then, it hurts a bit that I am a distant second to those kids, but even then, and all of the other time, I love how much Teddy adores those boys, even if (just for fun) they nicknamed him "Ted-Farts." Gotta love high school boys.

During hockey season, I see Teddy less than usual because he's always with Brian at a rink. Teddy goes to practices, film sessions, scouting trips, team dinners, and, of course, games, and when those are done, he wants more. Annabel and I tag along as much as we can, but Teddy is Brian's loyal sidekick and Brian, Teddy's.

When the state tournament rolls around at the end of the high school hockey season, Brian gets particularly busy, which means I see Teddy even less. These last few weeks, it bothered me that I was so distant from my 6 year old, so at Brian's urging, this past weekend I did something I don't normally do -- I made Teddy hang out with me even though he didn't want to. Kind of pathetic, I know.

On Saturday, I forced my son to come to lunch with me while Annabel napped at home with Brian. He didn't talk to me much on the way there, as he was mad at me for not letting him stay home and play knee hockey. But I stood my ground and insisted that he spend time with his mother. As he kicked the back of my chair in protest, I was convinced I had made a huge mistake. Maybe we just can't be close during hockey, I thought. But on the way home, I changed my mind.

On the ride back, Teddy started talking to me. Of course, the topic started with hockey, and we gabbed for a while about Brian's team and Teddy's team and all of the excitement that we felt about both. Then Teddy turned the conversation to the t-shirts that I have been driving around town the last few weeks. They are shirts that we have been selling through the hockey program for fans to wear to the tournament games. The proceeds all go to Kristin and her family, and the t-shirts read, "Fight Like a Bulldog."

Saturday afternoon, Teddy asked me why we are selling t-shirts for Kristin. I explained it's because she is going through a hard time and we want to help her.

"What happened to ha?" he asked, looking at me in the rearview mirror, with an expression so full of concern that I felt like whatever I said next would be etched in his brain forever.

"Her breast cancer came back, buddy," I explained, completely unsure if that was the right thing to do.

"Oh," he responded quietly. He paused. "When will she be better?"

"Well, she has to get all of that medicine again so it's not easy for her or for Coach Corey so that's why we want to sell these shirts to get them some extra money."

He was quiet. Thinking. I wondered if the conversation was over. I waited.

"But how will the money make her better?" Once again, I was reminded where the term "heartache" comes from. Because my heart really did ache at that moment. I gulped down the rock in my throat.

"Aw buddy, you're a good man. Well, the money can't make the cancer go away but it can help make other things easier for her while her doctors help her to make the cancer go away." He was satisfied. And that was the end of that conversation.

*  *  *

In front of a Canton crowd that had literally overflowed from the stands, Brian's team put up a valiant effort in the state tournament last night. They fought down to the last second, and almost tied the game up with seconds to play. But the puck didn't bounce in the Bulldogs' favor, and a talented and hard working team from Medfield eliminated them from the state tournament just one game away from playing for the state title.

I drove Teddy and Annabel back from Bourne with the South Finalist trophy seated between them. Despite the disappointment I shared with all Canton fans, it was a precious 50 minutes, and I was so glad that Brian and I had stood our ground and refused to let Teddy ride the bus with the team on the way home. Instead, he was stuck with me, his mother, the one who barely knows a thing about hockey (at least, in his mind).

That trip home was so surprisingly wonderful because I watched Annabel crack Teddy's anger and his sadness and make him laugh, something nobody but her could do. She told him silly stories that she invented and she repeated her favorite line from Frozen until Teddy gave in and let out a real laugh. (The line is when Olaf the snowman's bottom half is being flung into a snow pile and he yells, "Watch out for my butt!") Once Teddy was laughing at Annabel and, amazingly, enjoying both of our company, he started to ask his Teddy-Questions.

In the end, I learned from his questions that Teddy didn't care about the actual loss, despite that I really thought he would have. He didn't mention anything about not being able to go to the Garden next weekend, despite that he had drawn all sorts of signs about it. All he cared about was one thing -- "Will I still get to see Daddy's play-os?" I assured him that he would; not as much, of course, but he'd still see them. He smiled and nodded.

We continued to talk and play our music and at one point, Teddy told me about something that Brian apparently always tells his players. "They should be good play-os, but more impo-tantly, they should be good people." Teddy had it etched in his brain. I was so proud.

I love sports, but I'm weary of making analogies between life and sport (to the extent they are separate). Some analogies work, some don't at all, and I often worry that comparing something I see in a game to something I'd see at Dana-Farber, for instance, is flat out ridiculous. I will, nevertheless, say this.

Last night, with just about 20 seconds left to play, Canton scored their second hard-fought goal to make it 3-2. In the last seconds of the game, the Bulldogs fought hard in front of Medfield's net and down to the very last tick on the clock, a town stood at the edge of its seat to see if its team could pull off something incredible. When they lost, I'm sure there were some people who thought they hadn't been able to do it; that nothing awesome had happened for Canton that day. But I disagree, and I'm guessing that those who know this team or these coaches would, too.

It's not very often that you watch a group of young kids believe, down to the very last second of the game, that they still have a shot; that they still could win. Let's be honest, few adults can muster up that sort of energy and grit. But last night, when the buzzer sounded and the loss was cemented, I had this awesome feeling of being inspired by what I saw in between taking Annabel to the vending machines and the bathroom in the last minutes of that game. I've never felt that feeling before at any game, despite a lifetime of watching sports. Last night, as Canton gracefully accepted the runner-up trophy, I was inspired by a bunch of high school boys who call my son Ted-Farts and a coaching staff that cares first and foremost about being good people. That team showed a small town that even when you're just expected to "rebuild" you can build. That when you're down, you can still fight. And that when the odds are stacked against you, you can still believe.

What's Inside

Some women love being pregnant and some women hate it. I was somewhere in the middle. I enjoyed certain parts about my two pregnancies, for instance, feeling the baby kick and seeing him or her moving around on an ultrasound. And I hated other parts about it, for instance, how immobile I became. By far the part I disliked most of all about being pregnant was the stress that I felt as the carrier of a precious little person. All of the sudden, I stopped J-walking and I became a better driver. I also started to pay much closer attention to my body. For a person prone to anxiety, it wasn’t always fun.

I remember being pregnant with Teddy and my OB telling me that if I didn’t feel the baby kick in some number of hours, I should call. What a terribly frightening instruction! How was I supposed to monitor his movements? I was in the middle of working and going to law school. What if I got distracted and failed to report a period of the baby’s stillness? Would I have missed my chance to save him from whatever harm had caused him to stop kicking? Of course, Teddy was Teddy from the start, so it turned out that stillness was never an issue. Rather, I was often scared that the little guy was having a seizure in my stomach—he was ridiculously active even in the womb.

Being pregnant was good training for being a parent because it was the first time that I consciously struggled with trying to determine how to appropriately react to something unexpected. I never knew if I was underreacting or overreacting when something in my body changed. For instance, I remember one afternoon when, all of the sudden, my ankles had doubled, or maybe even tripled, in size. It was horrifying, and not only because it looked totally gross. I debated whether or not to call the doctor. Will she think I’m nuts? I should wait. I did just eat a lot of Cheezits. It’s probably the salt. But what if it’s something worse? Yep, I better call. So I called. The doctor told me what doctors often tell me—Watch the symptoms and if they don’t subside, call back. My ankles never went back down completely until after Teddy was born but they shrunk enough for me to know that I hadn’t come upon a fatal condition.

I also hated when people told me to “trust my body” and that "you know your body." My body was doing crazy things, like gaining 60 pounds and bumping my bra size up to a DD. How could I trust something I felt I barely knew?

As you can probably guess, there's a great parallel between this awful state of pregnancy vigilance and the vigilance I feel as a "cancer survivor." Actually, I feel the same way now only approximately 2,000 times worse. The uncertain vigilance, the overwhelming fear, the body I barely know. I’m supposed to trust something that betrayed me and I’m supposed to know something that has been reconstructed in ways I never could have imagined.

While so many good people have celebrated around me that my MRI results were clean, my fear has, unfortunately, not subsided. I went back to my writing last night (drafts that I never published) to see when I first wrote about the pain in my chest. It was at the end of August last summer. It’s been on and off, but it’s persisted since then. I have come to the realization that I need an answer as to why and without one, I just can’t rest. 

I told my mom most of this in a quick email yesterday. She insisted that I call to schedule the CT scan that Danielle mentioned when she gave me my MRI results. “If you’re still in pain in a few weeks, we can do a CT scan to look at the chest wall and we can take a look at the bone.” My heart sunk when she said that and it sinks again now that I write this.

I didn’t have the courage to call to set up the CT scan yesterday. I just didn’t want to go through it all again—the test, the waiting, and possibly, a dreaded answer. I just wanted to do my work in my little office and pretend like all of this wasn’t still happening.

As I walked to the train after work, too late to call to schedule the appointment, all of the sudden, I wanted to. The fresh air was so much warmer than it had been on my trip into the city and perhaps it was that air that gave me the courage I couldn’t muster up all day. Unfortunately, it was too little too late, for this weekend at least. So I’ll wait. Again. On Monday, which happens to be my 34^th birthday, I’ll most likely call to complain, for the fourth time now, that the left side of my chest still hurts. And I rearrange everything, fall back on work and laundry and everything else in life, to try to figure out why I’m still in pain at the place where they dug out the tumor and all surrounding breast tissue. To try to confirm that the pain is not cancer rearing its ugly head again.

In the meantime, I’ll most likely obsess about what I feel, or think I feel, or don’t want to feel. I know there are people out there who “know their bodies,” I’m just not one of them. I was 100% sure that Teddy was going to be a girl and 110% sure that Annabel was a boy. When I was certain I had a brain tumor, it was only TMJ and that pulmonary embolism I knew I felt, that was just a broken rib. I was blind-sided when told that the lump in my breast was cancer and shocked (literally) when my heart slowed to a dangerous beat when a drip of Taxotere entered my bloodstream. Maybe there are some people who have premonitions or instincts or whatever you want to call them about what’s going on inside their bodies, but I don’t. I have absolutely no idea what’s happening in there. The problem is that part of me wants to know more than anything in the world. And another part of me can’t bear the anguish of trying to find out.

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.