Wednesday, January 21, 2015

The Dark Side

Late last night, after spending an hour cleaning up Annabel's vomit from her bed and every other place between her bed, the bathroom, and the washing machine, I cozied up next to her on the sofa and decided I needed to do something fun before Brian returned from hockey. An amazing friend of mine, Jess, had recently emailed me a list of celebrities and their publicist's or agent's contact information. I figured, What the hell?  

I took the core of the email I had sent to Oprah, Ellen, and the Today Show the day prior and edited it a bit. Then I picked some of my favorite celebrities on that list and one by one, I hit Send. It was fun, really fun, and it's even more fun waiting for a possible reply.

In fact, I did get one reply today! It was from the agency that represents Kelly Ripa:

Dear Tara,

Your book sounds wonderful and we look forward to checking it out. At this time Kelly will not be able to participate but we wish you the best of luck with the launch.

Best,
Lauren


I was psyched!!! I mean, someone actually saw my email and replied!!!

I tell this story as one example of lots of fun stuff that has been swirling around finishing my book and planning for the launch party in May. It's been one of the most exciting things I have ever done and I feel blessed every day to be doing it. But that's not what drew me to the "New Post" button tonight.

*   *   *

Fernando Morales was 20 years old when he died of cancer last Friday. Fernando lived in a town that borders mine, and I never met him. A dear friend of mine, Amy K, first told me about Fernando last September. As a Make-A-Wish volunteer, Amy had helped coordinate Fernando's wish to go to the Olympics several years ago. Amy cares about her "wish kids" (as she calls them) years after she makes their wish come true and it was clear that Amy loved Fernando. 

Somehow, Amy even discovered that there was a yard sale to benefit Fernando's Jimmy Fund Walk team on the same afternoon that my fabulous friends, Erin and Katie, were holding a yard sale to benefit our team. Amy made up flyers to point our customers to Norwood for Fernando's team's fundraiser and we heard from several people that Fernando's team had sent them to Canton. 

Just before last year's walk, Amy told me that Fernando was going to be a Walk Hero for the second mile. When we reached Fernando's poster one mile into the 26.2 mile journey, I snapped a photo and texted it to Amy. 


I thought about Fernando during that mile, just as I thought of each Walk Hero after I passed them. To be honest, however, I hadn't thought about Fernando since, until last Friday. Our paths never crossed in any other way and I just assumed he was doing okay. Maybe I had to assume that for my own well-being. 

Last Friday, Amy and I met with a wonderful Jimmy Fund Walk staff person (Nora) at Dana-Farber to discuss details of the book launch event. In an eerie and beautiful irony, we talked about Fernando and his sheer awesomeness. Some sick part of me wants to know whether Fernando had died already as we conversed about how amazing he "is."

Nevertheless, this is not a post about Fernando. I really don't know enough about him to do his story any justice. To honor his legacy in a small way, however, I will provide you THIS LINK, which includes a video that captures a piece of Fernando's spirit. But then I will diverge, mostly out of respect for this young man. 

*   *   *

I know that sometimes cancer can look "fun." Chances to meet a celebrity or go to the Olympics or email Oprah and Ellen begging them to send me a "Hope is" video. Trust me, those things are fun and perhaps after cancer, they are cherished like never before. But amidst all the fun that gets photographed and put on posters and marketing materials, one must never forget the dark side of cancer (at least, that's what I'm calling it). 

The dark side holds the cancer world that rarely gets discussed in public, perhaps mostly due to the fact that those of us who have been there don't really want to describe it to those who have not. Believe me, cancer does not have a monopoly on the dark side. But it has a big, splintery stake in it. 

The dark side includes moments that don't get posted on Facebook, or even on a blog as open and honest as this one. The dark side includes difficult moments so seemingly random that we don't even want to own up to them. Moments like a few weeks ago when I took down our Christmas decorations and nearly burst into tears when I started to wonder if I would have cancer again the next time I took them out. Those dark moments are not easy and even now, two and a half years after my diagnosis, they still arrive at my doorstep when I least expect them. 

Obviously the lump in my throat while packing up our Christmas decorations is nothing compared to the tears that likely are flowing at the Morales home a few miles away. These are just two different corners of the dark side. And we must not forget them, nor the countless other corners that exist there. 

I needed to write tonight not only to grieve in a relatively small way, but also to bring myself back to basics. To remind myself why I want to raise $100,000 for the Jimmy Fund this year, why I want the book launch party (which proceeds will all go to the Jimmy Fund) to succeed in such a big way, why I wrote my book to begin with. 

Because while it's really fun to write to Oprah and Bruce and Ellen and hope they respond, in the end, what I want is something so much bigger. 

I want a cure to cancer. And I want it so badly that I can taste it in the tears that fell onto my keyboard as I uploaded the photo of a Walk Hero whom I never even met. 

Wednesday, January 7, 2015

Day Two...

This morning after I woke up in a pool of sweat, I wrote a poem in my head:

Day two
Feel like poo

It was all the literary brilliance I had in me. It had been a restless night of feeling really hot and really cold and rustling through the cabinet at four in the morning to find anything that would make my sore throat feel better (everything I found was long expired). 

I missed work yesterday because I felt so crappy and then I laid around so much of the day that I was sore and grumpy.  

When I woke up this morning, I thought I would feel better but I felt worse. I was frustrated and exhausted at the thought of so much as making Annabel's lunch. And I was scared. Annoyingly scared. 

I know that it's just a nasty cold. I'm sure that I need to rest and it will pass. But it's times like this that I am reminded of how traumatizing it can be to learn that your body has betrayed you. That an Intruder set up camp in the basement.  

I do not need or want or deserve sympathy of any sort. I am not writing this post in search of any, "Feel better soon," comments. I am writing because I feel better when I write. I publish that writing because I think there are people who will feel better knowing that someone else feels the same way that they do. 

*  *  *

Several times in the last few months, I have heard PTSD and cancer mentioned in the same sentence. I always brushed it off, believing that PTSD was reserved for people who have been through war, rape, a terrorist attack, or something really awful like that. I have met several people who have been through such trauma. They have been and still are clients (and friends) about whom I care deeply. I have seen these people cry and shake and become speechless while remembering their traumatic experiences. It is tragic beyond words, and I hold it together only because I have a job to do for them and I want to do it. 

I have done some research on PTSD related to helping these clients. But I never researched PTSD as it relates to cancer patients. Until this morning. 

This morning, out of sheer curiosity, I Googled, "PTSD and cancer." (I think this was my first Google about cancer ever!) There were pages and pages of results, the first one being from an ASCO webpage. Since I remembered Dr. Bunnell talking about the ASCO conference he attends every year, I figured it was legit. (I have since learned that ASCO stands for American Society of Clinical Oncologists.) 

I spent only five minutes reading the ASCO page and a few other results so by no means do I claim to be an expert on the subject. Nevertheless, I learned some interesting things in those five minutes including the following (which are quoted from the ASCO page linked above):
  • PTSD is an anxiety disorder that a person may develop after experiencing an extremely frightening or life-threatening situation. Although PTSD is most often associated with traumatic events such as war, sexual and physical attacks, natural disasters, and serious accidents, the disorder can also affect people with a history of cancer.
  • A recent study found that nearly one in four women who were newly diagnosed with breast cancer experienced PTSD. (See HERE for more.)
  • PTSD symptoms are different for each person and can come and go. Although these symptoms usually develop within three months of a traumatic event, they can occur several months or even years later.
  • PTSD can also affect caregivers. Learning that a loved one has cancer, seeing a loved one in pain, and experiencing a medical emergency are traumatic events that may contribute to the development of PTSD symptoms during treatment or years after the person has survived the cancer. One study found that nearly 20% of families with adolescent survivors of childhood cancer had at least one parent who was experiencing PTSD. 
*   *   *

This is not a post claiming that I have PSTD related to my cancer (PTSD related to caring for my two children yesterday while Brian was at practice, well, that's a different story). Seriously though, I sometimes experience symptoms listed on that ASCO page but most people probably do, at least, to some degree, and I think my degree is relatively small. Plus I dealt with nightmares, fear, anxiety, and guilt long before cancer and they never really hindered me. Sure, for the past two years those things have been focused on cancer but if they weren't focused on cancer they would be focused on something else (terrorism was my fear-of-choice since 9/11 and drunk drivers also have terrified me since an accident that hit close to home). So I have consciously thought about it for the first time and I don't think I have PTSD. 

Nevertheless, one year, two months, and 22 days since my last infusion, I still get scared. I get scared because I love my life. And because experience has shown me that in a split second, everything can change. 

I am blessed with many of the factors that make a person less likely to develop PTSD, including a strong support system, great health care, and my trusty outlet (this blog). And I completely understand why cancer patients and caregivers, particularly those facing metastatic disease, could experience PTSD. I also would guess that there are lots of cancer "survivors" like me who likely do not have any diagnosable form of PTSD but who still experience post-traumatic stress. Perhaps a good first step is recognizing what triggers that stress. For me, it is worst when I don't feel well. 

Because when I don't feel well, even when it's just a stupid cold, I am haunted by tragic stories. Stories of people who arrived at the hospital not feeling well and, due to cancer, died soon after. Stories of aggressive cancers that yielded to nothing. These stories would have scared me before August 8, 2012, but after it, they are able to truly torture me. Because for scattered moments throughout a day of lying around feeling sick and sore, those stories can make a simple winter illness feel like the beginning of the end. 

I know it's silly. That I'm being dramatic. That I will feel better tomorrow. But I also can't seem to forget that at 32 years old, for reason(s) unknown, an aggressive and deadly cancer grew inside me. That shocking news, and the treatment that ensued, changed me. They made me realize, on a deep and sincere level, that I am vulnerable. Not in the sort of way that makes me observe trauma from a distance. But in the sort of way makes me feel it inside. As clear as a sore throat or an ear ache. Or a lump in my breast. 

Sunday, January 4, 2015

What Stuart Scott Means to Me

It's been a while since I have written here. A month and a half of blog silence. During any quiet moment at home, or on the train, or by myself in the car waiting for the Peapod girl (Lisa) to put the groceries in my trunk, I have edited my book or planned details of the book launch party. It has been fulfilling and exciting beyond words.

I did not plan to write today. My list of things to do to get ready for work and school tomorrow is long. But news that Stuart Scott died this morning made that list fade away. All of it can wait. What I have to say about what Stuart Scott meant to me cannot.

*   *   *

I did not grow up watching Stuart Scott behind the ESPN sports desk. Ironically, I played too many sports growing up to watch ESPN or any other channel. Still, Stuart Scott was a familiar face with a familiar voice. But if I had time to watch anything, I watched Oprah, so I never really got to know Stuart Scott.

Until 2014. Almost two years after I discovered my own cancer. Months after Scott's second cancer recurrence.

I fell in love with Stuart Scott after his ESPY Award speech. I watched that speech countless times, both the day after he delivered it (July 2014) and in the months after. That speech meant more to me than I can express. Because Scott articulated a clarity for which I had been desperate.

When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live. So live. Live. Fight like hell. And when you get too tired to fight then lay down and rest and let someone else fight for you. 

I found these words on the day I learned that another friend of mine had had a recurrence of her breast cancer. I found these words when I needed them most. When I needed to understand more about words we all toss around without much thought. Words like Win. Lose. Live. Fight. Rest. 

*   *   *

I loved Stuart Scott's speech so much that I put a piece of it on the t-shirts that our whole team wore for the Jimmy Fund Walk. And when I had to lie down on a building stoop 25 miles into that walk, near faint and exhausted like never before, I stared up at the sky and thought about the quote on my back. That quote didn't pick me up (I was far too physically drained for that). But it did something far more important. It brought me peace. It made me understand that I wasn't a failure, but rather, someone who just needed to rest. It reminded me that the real gift, the real achievement, was that others were crossing the finish line when I couldn't. 

Stuart Scott did not teach me about sports. He was not a sportscaster to me. He was a regular person who got cancer like I did. A father, a fighter, a survivor. He was eloquent and brave and resilient. He was smart and thoughtful. And in that ESPY speech, he used his experience with cancer and his reflections about it in ways that reached me and made my life, however long, better. 

Obviously I believe in the power of words. I believe in the power of writing and reading and listening and sharing our experiences. I believe that people can change us even when we don't know them well. Stuart Scott changed me. 

He changed me because he found the strength to stand up and deliver a speech days after being released from the hospital with liver complications, kidney failure, and having undergone four surgeries in seven days. Cynics may say that there was something in it for him to get up there and receive that award. Fame and some fortune. Heck, maybe he even paid someone to write that speech. I don't care. Because I have spent a week in the hospital, not with the severity of Scott's complications, but with complications nonetheless. And I am absolutely certain that Stuart Scott's body was begging for him to rest that summer night. But he stood up and spoke anyways. Maybe not to me. But, to me. 

I don't know a lot about Stuart Scott and I would never pretend otherwise. I do know, however, that the news of his death made me cry. My first tears of 2015. Because in 2014, when I met him, Stuart Scott gave me a gift. He made me disagree with every one of those obituaries that steal my breath and send a rush of indescribable fear through my body. He lost his long battle with cancer. 

No, he didn't. 

Tuesday, November 18, 2014

Compassion Fatigue

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

That is not for me. 

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

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

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

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

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

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

That's not for me. 

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

*   *   * 

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

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

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

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

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

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

*   *   *

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

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

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

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

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

*   *   *

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

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

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

*   *   *

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

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

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

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

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

"Yes, it is, but it's okay." 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*   *   *

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

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

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

*   *   *

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


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


*   *   *

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

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

Thursday, November 13, 2014

FRAGILE: HANDLE WITH CARE (Part Two)


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

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

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

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

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

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

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

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

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

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

Fragile.

* * *

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

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

Still, I'm pretty sure it was there. 

I kept climbing.

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

Handle with care. 
*   *   *

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

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

* * *

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

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

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

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

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

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

*   *   *

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

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

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

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

*   *   *

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

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

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

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

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

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