Denial (it ain't just a river in Egypt)

As honest as I am in this blog, obviously there are things I leave out -- lots of things -- for many different reasons. Some of those things feel too personal to write down even if I will never publish them, and others I keep to myself out of fear that I would hurt someone if I shared them. Tonight I feel uncomfortable and at the same time slightly liberated at my decision to write about something that I would normally keep to myself.

Anyone who has followed this blog for the past two and a half years knows that I don't talk about my dad very often. I do not spend as much time with him as I spend with my mom, which isn't to say that I love him any less. Indeed, even if he and I don't talk all the time, I have no doubt that my dad cares about me deeply and sincerely, just as I care about him.

My father is human which makes him -- like all of us -- complicated in some respects and simple in others. When it comes to my cancer experience, however, I honestly don't know where he falls.

Earlier tonight, a few friends and I were having dinner at my parents' house while working on some marketing ideas for the book. We got to talking about technological issues related to the blog, namely "SEO" (never heard of it) and how I no longer liked the blog address, www.TaraBeatsCancer.com. We were talking about how I had changed the blog title from Total Recovery. Full Stop. Checkmate. I win. to Hope is a Good Breakfast -- The Blog. I referenced the fact that I don't like the prior language anymore because it implies a linear battle with cancer and while hope for such a path was precisely what I needed during the earlier stages of this journey, right now, it didn't fit me. Now I see that so many people -- including possibly myself -- are not blessed with a linear journey through cancer. We may not get "total recovery" and while we may "win" in so many ways, cancer could still kill our bodies.

I could feel my dad heating up at the end of the table as I avoided eye contact and gave a very short version of that explanation. I knew he was mad. My dad grew up in the city -- in a tough neighborhood with countless obstacles -- and perhaps as a result of that, he often defaults to anger as his outward emotion. I wasn't surprised by his reaction in retrospect even if I was a bit taken off-guard by it at the time.

"Well you still have hope, don't you?" he questioned somewhat abrasively.

"Yes, I do," I answered defensively.

"You hope that it will never come back!" he asserted.

"Yes, obviously I hope that." Still defensive.

"Well then." For him, that was it.

"But it's come back in people I know, Dad." I wonder now if I should have said that. Either way, in my memory, the conversation ended there.

This small exchange shook me a bit, perhaps because I realized then and there how little of my inner experience with cancer my dad actually knows about. He doesn't read this blog, perhaps because of his dyslexia or because I write so freaking much, or maybe just because at 65 years old, he figures he's too old for blogs. I don't fault him for that. Or maybe part of me does. Honestly, I'm not sure.

When I think about my dad and his experience as a parent of a child with cancer, I wonder if consciously or subconsciously, he has taken the approach of denial. Merriam-Webster defines denial in relevant part as: a condition in which someone will not admit that something sad, painful, etc., is true or real. Wait, can people even do that consciously?

Is my dad in denial about my cancer? Does he just not let his mind process it all because he honestly cannot bear the thought of one of his children being hurt -- physically or emotionally -- or worst of all, dying? Maybe. Or maybe he does process it and just doesn't do it the way I do -- by blabbing everything to the world. In all honesty, even if it is denial, if that works for him, I'm so glad for it. Or more truthfully, I'm so glad for it 95% of the time.

In that 95% of the time, I want to keep my dad away from the reality of my cancer if that's where he wants to be. I want him to think, Tara beat cancer, even if I wouldn't phrase it that way and even if when I hear those words I think I feel cancer in my pancreas. In that 95% of the time, I am thankful for denial -- truly grateful for it -- and I want my dad to be safe there.

Then there's the 5% of the time -- the time when there seems to be a high, thorny wall between my evolving acceptance of my reality and my dad's possible denial of it. That wall can feel cold and in the 5% of the time, I doubt that I can climb over it, which makes me sad. But I have learned over the past two years that eventually one of us scales the wall (or digs through it). That's when I remember that having a child with cancer must be pretty f*&king awful. And I could never scale any wall if I expect my dad to cope with the f*&king awfulness in the same ways that I do.

"Hope is The Container Store"

When I first read the Francis Bacon quote -- Hope is a good breakfast but it is a bad supper -- something clicked for me and I knew that I had found the elusive title to my book. When I researched more about Francis Bacon and learned that he was the father of empiricism, I was sure it was right.

Since then, I have become fascinated with how others conceive of hope. What is hope to my kids? My mother? My friends and their friends? I wanted to hear from them, and then from others and still others. I wanted to see their faces and hear their voices and so I began to request that people send me homemade videos in which they finish the sentence, "Hope is..." 

The answers I have received so far have made me laugh and cry and think, and they have humbled me, often all at the same time. Each one is so powerful and so precious. Just like hope itself.

As I thought more about those who have given me hope in my life, I also came upon two of the world's biggest celebrities -- Oprah Winfrey and Bruce Springsteen. Each one of them helped me through my journey in their own ways -- Oprah for having told me stories that gave me perspective and the Boss for having given me the songs that I hummed when I was so scared I could barely breathe. And so a dream was born -- the dream that Oprah and Bruce would share with us a "Hope is" video. 

Since Oprah has a pubic email address, I figured I would start with her. Since my one little email would most certainly get lost in Oprah's inbox, I thought perhaps sending her a few hundred emails requesting a "Hope is" video would at least encourage someone behind oprah@oprah.com to recognize the request. Hopefully in the next few days, that all happens. It's fun to dream. 

At the same time, I know that I have a better chance of winning the lottery than reaching Oprah or Bruce Springsteen. But that's okay. Because in the end, the people I have reached have filled my heart.

*   *   *

Anyone who has followed this blog knows about my most favorite store in the world, otherwise known as my "holy land" -- The Container Store. It's paradise in a perfect container. So obviously I needed a "Hope is" video from the lovely people at The Container Store. 

My mom and I had been trying to get there for a few weeks now -- me for the video and my mom for something that involved organizing her files. This past Sunday, we found a small window of free time and began our pilgrimmage. 

We got there at 11:00 AM on the dot, which is precisely when it opened. I knew the woman I wanted to find. Well, I knew her face, although I still am not certain of her name. 

I'll never forget this woman because in one of the many trips that my mom and I took to The Container Store during my treatment, she told me that she was a breast cancer survivor of several years. It meant so much to me to see her standing there healthy and healed. 

When we walked into the store on Sunday morning, I looked around but didn't see the woman I was looking for. So I approached the woman at the nearest register. Her nametag said Julie. I introduced myself and warned Julie that I had a strange question for her. She lightheartedly said she had heard it all. "Still you probably haven't heard this," I laughed.

To start, I told Julie how I had been treated for cancer. She held up her hand to give me a high five and announced, "Me too! You go girl! Where were you treated?" 

"Dana-Farber, you?" 

"Same!" She was beaming -- with such strength and life. I started to cry. Because years after her cancer, Julie was still here. Because I had unknowingly found her. And because she knew all about hope. 

Julie was a ray of light that Sunday morning. She was funny and kind, open and honest. When I told her how much I visited the store during my treatment, Julie said she understood. She said that sometimes when you're going through something really hard, you just need a sense of control over something, even if it's just stuff in the perfect container. It is so very true. 

Julie also told me that she has a blog, "not about cancer, but about having a transgender child." Tonight I read the recent posts on Julie's blog and they are amazing, truly amazing. 

The "Hope is" video that Julie is arranging with The Container Store crew will likely be no more than 10 seconds of the book launch party. It may be nothing longer than, "Hope is The Container Store." But to me, it's so much more than that. And in the end, the video Julie is arranging is why my heart is full, and will remain full even if Oprah and Bruce never write us back.

Please click HERE for HOW TO HELP US REACH OPRAH.  BRUCE WILL COME LATER!

Oprah...are you there? (Bruce, you're next...)

One of my biggest goals and dreams for the book launch party in May is to get Oprah Winfrey and Bruce Springsteen to submit a "Hope is" video. I am going to start with Oprah and I NEED YOUR HELP!

I emailed Oprah already but I am sure my email got lost among thousands of others. BUT WHAT IF HUNDREDS OF US SENT AN EMAIL TO OPRAH WITH THE SAME SUBJECT LINE? Perhaps then we could get her attention? How about if we all try TOMORROW (Tuesday January 27th, when those of us in the Northeast are stuck inside because of the blizzard)??? 

I would be forever grateful if on Tuesday January 27th (or, if we lose power, Wednesday January 28th) you email OPRAH@OPRAH.COM with the subject line:

"HOPE IS" VIDEO REQUEST FOR CANCER PATIENTS

Obviously you can write whatever you want in the email but if you're stuck, you could paste in something like this:

***

Dear Oprah,

My [friend/cousin/whatever], Tara Shuman, is collecting videos in which people from all over the world finish the sentence, "Hope is...." Tara underwent cancer treatment at age 32 for an aggressive form of breast cancer and she has now written a memoir called, "Hope is a Good Breakfast" that will be launched at an event to benefit the Jimmy Fund/Dana-Farber Cancer Institute on May 29th in Boston. If you could spare a minute to send Tara a video of you explaining your idea of hope in one sentence, she will share it with other cancer patients and their loved ones at the book launch event, and we will all be deeply grateful. You can email the video to Tara at hopeisagoodbreakfast@gmail.com or post it to the Hope is a Good Breakfast Facebook page.

***

THANK YOU ALL SO MUCH for always helping me with my crazy dreams!

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. 

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. 

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.