Monday, March 31, 2014

F-ing Hard Work

This past weekend, I had the pleasure of a hearing a marvelous social worker and yoga instructor teach a workshop about techniques to help young adult cancer patients and their loved ones deal with stress and anxiety. I almost didn't go to the workshop, ironically, because I was anxious. I had just delivered my own portion of the program at Dana-Farber's annual Young Adults Conference, a talk I had spent months preparing for, and although I was pleased with how it had gone, I was still recalibrating. I doubted that I would be able to sit still for a whole hour with all that energy churning inside, but I'm so glad that I did. (Plus, we didn't end up having to sit still.) 

The instructor, Claire, said several things in the workshop that resonate with me even now, days later, when I've typically forgotten most of what was presented in a similar setting. I'm sure I can't convey Claire's messages with the eloquence or accuracy that she did, but nevertheless, I have an urge to write about my take on some of what she offered to the packed room of patients and caregivers tormented by a vicious disease. 

Claire explained that human beings are wired to focus on the negative. She gave a great example of a pre-work routine. She explained that if you get up, take a shower, make a cup of coffee, and arrive at work, you don't say, "Wow, what a great morning I've had!" However, if you wake up, your shower floods, your coffee machine breaks, and you get in a fender bender on the way to work, you most certainly will remark that it had been a terrible morning.  

Admittedly, Brian and I couldn't help but look at each other and laugh at this example of a morning routine since, with two young kids, it is hilariously unrealistic. (In fact, if all of those "bad" things happened and I still managed to make it to my office on time with my kids safely at school, I would probably think it was actually a great morning.) Nevertheless, for several reasons, I loved Claire's message. 

First, I think that part of me is relieved by it. "I do that!" I wanted to yell at Claire over the rows of people in front of me. "I dwell on bad news all the time and I hate that about myself!" But I didn't yell; I just sat there and enjoyed the thought that maybe I wasn't being a negative person when I did that, but rather, just a normal one. 

Since I was diagnosed, I feel like the topic of "positive thinking" is all around me. Friends have given me books about it and almost every single day, it comes up in conversation. I am flattered when people say that I'm a positive person, although I don't fully understand why they think that. Still, I want to be at least considered positive, so I take it as a compliment. 

On Saturday, Claire spoke about positive thinking. She explained that if we have a performance review at work and receive 25 compliments along with one piece of criticism, we dwell on the one piece of criticism. Um, yep, I definitely do that, too. 

Claire explained that we would all be better off to spend more time with positive thoughts. For instance, those 25 compliments -- how long do we really spend with those? Do we just glance over them in search of something bad? (Yes, I do.) Claire says that we shouldn't do that. She also explained that it takes five compliments to erase every criticism. Interesting, because my ratio is more like 30 to 1. 

Of course, when it comes to dealing with terminal illness, the analogy doesn't always work. For instance, had my bone scan last week turned up cancer in my ribs or my sternum (thank goodness, it did not), I'm certain that no amount of positive thinking could lead me to believe, "But they didn't find it in my toe! That's great news!" No freaking way. There's some news that just plain fucking shits and people who receive that shitty news deserve time to process it without anyone's expectation of them finding something that smells nice buried deep within.

At the same time, there are people like me who (for example) have been blessed with good news, yet still find themselves fighting negative forces. Often, these forces are so much less significant than ones directly related to the disease, but still, they are repercussions that I think it helps us all to discuss. 

I have found that I go from being thankful to being greedy very quickly. For instance, last week, as I emerged slowly from the bone scan machine, I wanted more than anything in the world to have that scan come back clean. I would have given up my house, my job, and probably several limbs for a good result. Little else mattered. 

A few minutes later, quite unexpectedly, the nurse who had kindly injected me with radioactive dye, told me that my scans looked clean. She had spoken to the doctor who had reviewed them on the spot to be sure that additional pictures weren't necessary. I couldn't believe the news or that I had received it then and there. I asked the nurse if I was dreaming. I just couldn't comprehend it because I knew for certain (or so I thought) that they were going to find cancer. The relief I felt was, once again, indescribable. 

On my way out, the nurse asked me if I had young children. I said that I did. "You can hug them but you shouldn't sit next to them for an extended period of time tonight. There are still traces of the radioactive material in you." 

"Um, OK. Is that really safe then?" I inquired, thinking back to the Cold-War-ish metal container from which she took the dye before she inserted it into my vein. She assured me it was a very small dose. That didn't make me feel better, but I mentally returned to the good test result as I exited the room. I was so excited to share my great news. 

That night, Annabel begged me to snuggle during the kids' before-bed TV show. I hugged her, but told her I couldn't snuggle that night. She was mad, and so was I. That's when I got greedy, too. A few hours prior, I'd have given up all future snuggling with my daughter to be able to sit in the same room as her for years to come. But now I was pissed. Why did all of this shit have to happen? I wondered for a minute or two.

The night after my bone scan, I hadn't yet participated in Claire's workshop although I think some of her techniques may have already lived in me. I let go of the frustration I felt for having to accept radioactive material into my veins and I absorbed the fact that that dye had lead me to the answer I had waited so long to hear -- that the pain I felt in my chest was most likely not cancer. But here's my main point -- that focusing on the positive does not come naturally to most of us. In fact, for the record, I believe that positive thinking is fucking hard fucking work. (I rarely swear, but I just need to tonight...yes, even twice in one sentence.)

On a slightly different note, in the last few weeks, I have missed a lot of work time dealing with all of my tests and medical appointments. As a lawyer, I bill by the hour, so there's no way to fake it when I don't work. I either have hours and a product to show for it, or I don't. And although I had a solid start to 2014, in March, I fell far behind my target hours.

On the spectrum of lawyers that I know, I probably worry about my hours less than most. But still, I'm not someone who enjoys missing a target that has been set before me. Especially not when my house and family kind of relies on it. Of course, when I was in the throes of the MRI, CT scan, and bone scan, I couldn't have cared less about my hours. I figured those would only matter if I was even able to keep my job and since I felt so certain my cancer had returned, I wondered if that would even be possible.

Once my scans came back clean, however, I got greedy in this sense, too. I started to feel guilty about my low hours. I became frustrated that I hadn't been strong enough to suck it up and get work done on the nights after my appointments. Instead, I usually wrote and went to bed. I got down on myself, dwelling on all of the things that I hadn't done, the hours I hadn't billed, the work I hadn't produced.

This is where Claire once again had a message that I swear, sang to me. Spend time with the good things rather than taking all of your energy from the bad. I could so easily apply this to myself. In the last few weeks, despite my pathetic number of billable hours, I had done lots of good things. And Claire was right, I spent almost no time feeling good about any of them.

Claire explained that we can change our outlook and our attitude if we spend time with the positive rather than dwelling on the negative. I believe her. Because from what I've seen, if we want to find something to complain, worry, or be sad about, we sure don't need to look very far. But, at the same time, if we want to find something to be proud of, to feel good about, or to make us smile, we probably don't need to look very far, either. Claire made me better understand something that I have been feeling for quite a while; something that people don't usually talk about  that being negative comes naturally to most of us. And that being positive takes a lot of no bullshit f-ing hard work, none of which will ever have a billable hour to show for it. 

Wednesday, March 26, 2014

A Privilege

March 26, 2014. I first heard that date back in October, on the day of my last infusion. I remember thinking that date sounded so far in the future that I couldn’t even comprehend it. I remember clicking forward five times on my phone to enter the appointment into the proper month. And I remember the ironic feeling that I know so well—the feeling of desperately wanting the future and also being so deeply scared of it.

I wasn’t nervous for today’s appointment because I figured I couldn’t possibly receive any bad news. Still, I knew I’d have to talk to Dr. Bunnell about the pain that persists in my chest, and I wasn’t looking forward to that conversation.

I hate talking about my pain for lots of reasons, one being that I can’t describe it well and that just frustrates me. It’s a deep pain, sometimes so deep that I can feel it behind my shoulder. Sometimes the pain is dull, but sometimes it’s sharp; sometimes it burns, and sometimes it aches. With all my breast tissue long gone and the nerves still not functioning, it can be a strange sensation to feel something beneath where I feel nothing.

In anticipation of this appointment, I tried to pay productive attention to the pain in for the last few days. I stayed away from CrossFit to see if it would improve with rest. It did, a little bit, but it’s definitely still there, and I’m more anxious than ever to return to the gym.

After my CT scan last week, I felt indescribable relief that cancer did not appear to be the culprit of the pain. Dr. Bunnell is confident that it is not. Still, after I answered his questions about my pain today, he ordered a bone scan. This is the last of the tests he will do to try to confirm that my pain is not caused by a recurrence. After that, he explained, we would have looked everywhere there is to look.

I had not requested a bone scan, had not anticipated placing it on tomorrow’s to do list, and dread it like I've dreaded all other tests that could turn up cancer. But Dr. Bunnell thinks it’s a good idea, if only to be absolutely sure the Intruder is not lurking inside. Fun times.

It turns out that three hours prior to the bone scan tomorrow, they need to inject me with some sort of fluid. “Three hours?” I asked the scheduling lady, surprised. “That’s a long time!” I exclaimed. Sometimes having a job can be tricky on the schedule and this week has certainly shaped up to be one of those times.

For a whole bunch of different reasons, tomorrow is not a convenient time for me to spend over four hours at Dana-Farber. With a job like my mom has, I’m 100% certain that it’s not convenient for her, either. But knowing that Brian wouldn’t be able to take me (he has his own medical appointments to handle tomorrow), my mom never hesitated.

“I can do this alone,” I assured her, trying to convince myself as I said it that it was true.

“Absolutely not!” she insisted. I could tell she wouldn’t budge so I didn’t even bother arguing any more. Plus, I really wanted her to be with me. I’m such a wimp.

Lately I joke with my mom about the craziest thing that she often says. She tells me that it’s a “privilege” for her that she can help me through all of this cancer stuff. I laugh at her whenever she says that. “A privilege that you get to help me though all this shit? Oh yes, you’re one lucky lady!”

“I mean it,” she explains, smiling at my sarcasm.

I don’t know that there are many caregivers out there who consider it a privilege to rearrange their schedule for their loved one’s third scan, to sit in waiting rooms for hours, and to be strong in countless stressful moments in between. I’m pretty sure that normal people would consider all of that to be quite a burden. But my mom’s not normal. She’s like a superhero; using all her strength to help rescue someone weaker; and believing all the while that she is actually fortunate to be able to do that.

Sunday, March 23, 2014

A New Nurse

It’s not easy to get an IV into my veins. As the experienced nurse at Dana-Farber said last week, my arms looked “used.” As the gateway to almost all of my medications, they certainly have been used, and the nerve damage from a year of infusions has left the top surface of them numb.

A few weeks ago, my mom and I got talking about a hypothetical that was somewhat based on experience. We were pondering which nurse we would prefer if we had to choose between two IV nurses. The first nurse, Nurse A, is a total expert and can get an IV into the arm with ease; just one poke, and it’s done. No hassle, no small talk, no comfort if you’re feeling scared. Nurse A is all business.

Nurse B is a newbie, and she smiles a lot. She struggles to get an IV into tired veins, but she tries so hard, wants so much to help, and wants so badly to not hurt anyone’s arm. The skill does not come naturally to her, at least, not yet, but she cares. Genuinely cares.

Which nurse would you choose?

My mom insists that no one should have to choose; that Nurse A’s skill should always be combined with Nurse B’s kindness and empathy. I agree, but I force her back to the hypothetical. “It’s not even a choice in my mind,” my mom explains, and she chooses Nurse A. “Get the damn IV in,” she jokes, in all seriousness. I knew she’d choose that one.

I don’t need to think about it, either, because without question, I’d choose Nurse B. Sure, I’ll endure a bit of needle-digging and I’ll leave with a few bruises on my arms, but I don’t mind the physical discomfort. It’s the mental stuff I suck at so I want someone who can spot all that mental baggage I carry. I want someone who tries, in his or her own way, to help me through it. I want someone who leaves work still thinking about the people he or she cared for there.

After my less-than-impressive early interactions in the radiology department at Dana-Farber last week, it was finally time for the CT scan. A young woman, probably in her late twenties, came to retrieve “Tara S.” My heart jumped into my throat. I gulped, and left Brian and my mom behind to venture into the testing area.

From the moment I met her, I liked the nurse who prepared me for my scan. She noticed things, like that I was shaking and on the verge of tears, and she so clearly wanted to help ease my pain. When she asked me to take off my bra, explaining that underwire could interfere with the scan, she immediately went to lower the shades to the window that looked into our room (I hadn’t even noticed people were behind that glass). The shades were broken but the nurse insisted on getting them to work so I could have some privacy. I waited while she tugged at the string. “Oh, don’t worry, half this place has already seen my boobs,” I joked quietly, appreciative that she respected me the way that she did.

When I lied down on the table, clothes and shoes on, the nurse explained that she was new so another nurse would be helping her. I have come to love new nurses. I’ve found that they often seem to try harder to do well than more experienced ones do. (I’ve always been one to judge people largely based on effort.) As the new nurse prepped the IV gear, she explained that they would run contrast into the IV at one point during the test. “You’ll feel a warm flush and you’ll probably feel like you peed on the bed even though you didn’t.” Lovely, and ultimately, very true.

She then explained what would happen during the test. The table would move me in and out of the thin tunnel a few times and a voice inside would tell me when to hold my breath. It sounded very simple, but still, tears fell onto my pillow. The nurse reiterated that the test would not be as scary as I thought. “It’s not the test I’m afraid of,” I explained. “It’s the results.”

In truth, I was so scared that my spirit was barely contained within my body, the former perhaps trying to escape from the latter for having betrayed it. Everything around me became snapshots, clear images captured in time; almost everything in the background completely blurred out.

The nurse looked at me. She saw the terror, and she wanted so sincerely to make it better. At one point, I’m pretty sure she almost started crying, too, which made me want to hug her and tell her I would be OK, even though I thought that was a lie. She rubbed my arm and told me that her mom was breast cancer survivor of several years. That she can only imagine how scary this must be; that I’ll get through it. She told me that I was brave. That last part made me laugh out a, “Yeah, right.” I had never felt less brave in my entire life.

It all sounds simple now, what the nurse said to me. But the power of her kindness was indescribable. She took the weight of the world and made it lighter.

Soon it was time to get the IV into my arm. The new nurse went to fetch her mentor, a more experienced nurse, and they each stood on either side of me. The new nurse attempted to insert the IV. She dug around in my stubborn vein for a while, apologizing for causing me pain. “It’s nothing,” I explained. “I really don’t mind.”

Eventually, both nurses realized that the IV wasn't going to flush correctly and we’d have to try again. I couldn’t even really see her, but I could tell the new nurse was disappointed in her apparent failure. She apologized some more. I tried to convince her that I didn’t mind at all. “It took five times at my last infusion,” I explained. But neither of the nurses saw that as an excuse. They clearly didn’t want to stick me five times. 

The expert nurse—a woman equally as kind and comforting as her mentee—started to assemble the materials to insert the IV on my other arm. I knew that she would get it in on the first try; she had that sort of calmness and confidence. But I had another idea.

“She can try again,” I told the mentor nurse, referring to the new nurse. They both froze, confused. “I know she can do it, let’s have her try again.”

What happened next was so awesome, probably because I think that education is the key to all progress in the world. I watched the experienced nurse teach the new one. The woman on my left explained to the woman on my right how deep she enters the vein with the needle before she “threads the catheter” (only one quarter in). She asked the new nurse to describe what she felt as she tried to hook into my vein. For a minute, it wasn’t about me. It was about teaching and learning; an expert passing on her wisdom to someone who so badly wanted to learn it. Despite the fear that had, minutes prior (and minutes later), overwhelmed me, I was able to escape into those few moments and see the real beauty in them.

We all celebrated quietly when the new nurse got the IV into my arm on the second try. I was so proud of her, and she was proud of herself, too, which made it even better.

The test came next, and both nurses continued to guide me through it like angels who had swooped down to earth to rescue me from what really had become the scariest time in this whole ordeal.

I could see the experienced nurse’s name stitched into a patch on her white coat. I locked her name into my memory so I could thank her one day. The new nurse’s badge was flipped backwards, however, so I couldn’t see her name. Once my legs stopped shaking violently (no doubt, at the thought that a radiologist was somewhere viewing the inside of my chest that was riddled with tumors), I asked the new nurse her name.

“It’s Kristen,” she answered. I smiled to myself, and knew that I would never forget it. 

Tuesday, March 18, 2014

Sounds and Tastes -- the CT Scan

For my birthday, I asked Brian for new headphones. In particular, I suggested the "Beats by Dre" because my friend, another suburban mom-lawyer who I wish I could be more like, raved about them. When I made this gift suggestion, I figured the headphones would be no more than $100.

On my birthday, the kids helped me rip open the box. They had told me at least 50 times that Brian got me a "colow pwintew" (color printer) and I was pretty sure they were part of Brian's ploy. (Brian and I learned a while ago never to tell the kids a secret about what we got each other so Brian has started the amusing tradition of telling them a lie about what he got me.)

Let me tell you a few things about these new headphones. First, I am certain I look absolutely ridiculous in them. Second, they smell fabulous, like new leather. Third, they cost about three times what I thought they would cost, and I'd have returned them because of that but for the fact that...Fourth, the music is absolutely unreal. The headphones drown out other noise and then they make every note that is supposed to be heard sound so damn good. I'm kind of obsessed.

On the box of the Beats is a quote by Dr. Dre. He says, "People aren't hearing all the music." I like that, and in many ways, I think he's right. For proof, the other day on the train, the music sounded so good that I listened to a Bruce Springsteen song that I usually skip past. The song was "Queen of the Supermarket" and the first verse starts like this:

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

I teared up then and there, amidst the smell of body odor and pot that so often fills the subway. "Bittersweet taste of life." Yes, precisely. 

*  *  *

I think I knew that I was heading towards rock bottom of my "recurrence rut" when, last night, I was almost numb with fear. I didn't take an Ativan because I was supposed to work today, but I am sure I could have benefited from one. Instead, I hoped that I would wake up, go to the gym, release some anxiety, and get through one more day until my CT scan. 

I woke up this morning feeling absolutely exhausted, which terrified me, despite that it was 5:15. I know that it's normal to be tired at 5:15 but it's not normal for me (at least, not after I've brushed my teeth). I recalled Kristin telling me that fatigue was another reason that she had had a feeling that something was wrong.

On the drive to the gym, the hair on the back of my neck stood up. I felt cancer; was so sure of it that I started to think about how I would live my life for the next few months knowing that I was about to die. I tried to psych myself up; I told myself, You will do it. You will find peace and you will say goodbye when you need to. But then, I started to cry at the thought of how much I wasn't ready to say goodbye. Of how much I wanted to still be alive. 

When I got to my class (I am still loving my Crossfit), I tried to hold it together. But I couldn't. I felt the cancer in my chest as I rolled out my sore legs. I wanted to carve the tumors out but there was no way to escape them. I panicked and thought I may throw up in the bathroom. I had to leave.

Luckily, I know the owner of the gym well enough that I told him why I had to bolt before we had even started the workout. "It's back," I told him, too scared to have a functioning edit button. "I know that it's back." He told me it wasn't, that I had done everything I could have done to beat it. But I didn't believe him. And I felt so badly that soon, my tragic test results would shock him and everyone else into seeing that they had been wrong about me; that I had been wrong about me. That I had not, at least not literally, beat cancer. 

I bawled my eyes out the whole way home. It wasn't even six yet so when I crawled back in bed sobbing, I kind of shocked the hell out of Brian. "This is it," I told him. "I can't do this anymore. I need to figure this out." He agreed, probably still totally confused as to what was going on. 

When I first scheduled my MRI a few weeks ago, I did so at a time that was relatively convenient for my work schedule. I tried to balance a whole bunch of things the week of that test. But this morning was different. This morning, I had fallen back into survival mode, that mode I remembered from my surgery and chemo days, where I couldn't focus on anything but figuring out if my body was going to allow me any more life. 

I called out of work (i.e., emailed my most supportive colleagues and friends), and sent messages to my doctor through approximately four different avenues. By 9am, my test was rescheduled to this afternoon. One o'clock. Thank goodness. Because I would rather have been physically tortured than wait another day. 

*  *  *

The hours home alone before Brian picked me up for the test were dreadful. I felt like a ghost in my own house. I tried to distract myself by fixing a computer problem I've been having (Shockwave plug-in, you are not my friend), but instead, I found myself staring at Brian's screen saver (a photo of him with Teddy and Annabel) and wondering if they really would be OK without me.

When I checked in at the radiology desk in the Dana building, I was fighting to stand up straight. The receptionist asked my name and my birthday. She found me in the computer and, with all good intentions, looked at my schedule and remarked, "Well that's great, you have an easy day today! Just this one test!" Easy day was not exactly what this one had felt like for me, but I was in no position to rationally explain that. Plus, I actually felt bad for this woman as I grunted in response and she continued typing away. I felt bad because she had failed so miserably at her effort to be nice, and it's never fun to watch someone fail so miserably. 

Then we waited. I shook and drank water and filled out my own paperwork despite that I struggled to remember the date. Finally, a man called my name and brought me back. I thought I was going in for the test but it turned out these were only screening questions. Brian joined me for those and stood very displeased as the man rattled off questions to me with less empathy than someone behind the desk at the RMV (Brian's line, not mine).


"Three. Ten. 1980."

"You've had CT scans before, right?"



"Well, I had one before cancer but none after."

"OK. Have you ever had a reaction to an injection?" I was confused. He repeated the question. 

"I don't know. I had a bad reaction to a chemo drug. Is that an 'injection'?" 

"No, I mean contrast." 

"Contrast? Um, no, I don't think so." 

He asked me more questions, kept typing with his back to me, and then sent us out to wait in the waiting room again. I wasn't impressed.

A while later, it was time for the test. In that most scary of rooms, I met two angels. Actually, I met another angel in the waiting room, too, but these stories will have to wait for another day as I'm too tired to do them justice tonight. But I will tell those stories soon and they are really beautiful ones.  

*  *  *

I knew I could get the results as soon as tonight but I figured it would be tomorrow. Nevertheless, I gave Brian my cell phone because, like when we waited for my biopsy results, I didn't want to have such horrible words etched in my brain forever. When Brian picked up just before dinner time, I was in the basement crawl space digging out a box of old baby shoes that Annabel wanted to give her "cousin," JJ, who Brianne and Seamus had brought by to visit. 

"It's Dr. Bunnell," I heard Brian say from upstairs. I dropped the box of shoes, nearly collapsed, then somehow made it up the old wooden stairs. 

Brian was listening carefully and after what felt like an eternity (it was probably five seconds), he smiled. "Good news." 

I fell to the kitchen floor, with so much relief and thankfulness that I could barely catch my breath. Teddy and Annabel came running over soon after and I had to explain to them that sometimes people cry because they're so happy. They looked really confused and I had to keep telling them I was crying because I was happy. Eventually, they believed me and they were really happy too, although I was glad they didn't join me in crying. I know, I should probably try to keep all that emotion behind closed doors but Dr. Bunnell called when all the doors happened to be open. 

Dr. Bunnell explained that these results are preliminary. The protocol calls for two radiologists to review the scans and by dinner time, only one had reviewed them. Dr. Bunnell knew I was a wreck and so he was kind enough to call with the good news, even if it was only preliminary.

I can't explain the relief that these results brought me. I still don't know why my chest hurts, but with a clean MRI of the soft tissue and a clean CT scan of the bones, lungs, chest wall, and lymph nodes, I feel confident that my pain is what my oncology team has suspected all along -- "post-surgical musculoskeletal pain." I feel confident that the intruder is not the Intruder and that relief is so great that I feel like I could float away.

Tonight, as I ate dinner with family and friends and tucked my kids in bed, I really did feel like everything I longed for was at my fingertips. The paralyzing fear and crushing numbness had lifted like a fog and I could, once again, feel the wonderful world around me.

But of course, it's not that simple, not once one has lingered in the Kingdom of the Ill. Now that I am finding my way back to the rational world, I am starting to see that so much of this recent torment for me stems from the torment that Kristin and her family is experiencing with her recurrence of HER2+ breast cancer. The bittersweet taste of life. So true. Because the relief that I feel right now exists largely because I know that I can avoid, at least, for now, the indescribable challenges that good, innocent, and loving people like Kristin must face. I tasted that pain in these past few weeks and I can say for certain, it's a taste no human being should ever have to bear. 

Monday, March 17, 2014

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.

Thursday, March 13, 2014

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. 

Monday, March 10, 2014

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.

Saturday, March 8, 2014

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 34th 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.

Tuesday, March 4, 2014

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.