Sunday, February 22, 2015

For Wil

I knew I wanted to go to Bowdoin College the moment I stepped on the campus. It was instinct mostly, but it was a logical decision too. I wanted a small liberal arts school that was close-to-home-but-not-too-close. I wanted a peaceful non-urban setting and an excellent academic program. Bowdoin seemed to be the perfect fit.

Over four years later, I was blessed to graduate from Bowdoin on a gorgeous May morning. It was a special day for so many reasons, including that I had the great honor of delivering a commencement address to the Class of 2002. The 25-pound laptop on which I wrote that speech is long gone but Google lead me to the speech today. It's linked here if you're curious what I thought about life as a 22-year-old.

Since I graduated from Bowdoin, I have only grown closer to the place. In October 2004, Brian proposed to me on the campus quad, and we found out I was pregnant with Teddy the morning before we drove up to our 5-year reunion. Five years and two kids later, we enjoyed a rainy 10-year reunion together with friends (two months after that, I would learn about my cancer). My therapy lady at Dana-Farber also happens to be a Bowdoin grad, and while I asked her to write the Foreward of my book for many more intellectual reasons, I can't deny that I love our common Bowdoin heritage.

There's no doubt I love Bowdoin College and feel immediately bonded to others who went or go there. I know I'm not alone in that sentiment, which is why I know I'm not alone in my sadness at this weekend's tragic loss of a Bowdoin legend, Wil Smith.

I never knew Wil more than to say hello in passing but I have admired him from a distance ever since I met him my freshman year. If you read this article you will know why I (and everyone else who knew Wil) admired him so. There is no doubt -- Wil was a truly remarkable human being.

Wil's passing is so surreal to me. I can't comprehend that a man so full of life could be gone. I can't fathom that someone so strong and so good would be taken from those to whom he gave so much. I can't accept that Olivia will be without her father.

Above all, I feel a sort of anxious anger at the news of Wil's death. I'm anxiously angry that we didn't have the answers Wil needed; that we've been too slow and that cancer has been too fast. I'm anxiously angry that Wil did everything he could to take care of his daughter and still she had to say goodbye. And in a strange way, part of me feels responsible.

I know it's crazy that even a small part of me feels responsible for someone else's passing. I know it's not my fault that Wil or anyone else died from cancer. But for some reason that I can't explain, I feel like I am supposed to help and when someone dies it means that I didn't do my job in time. Of course I'm not a scientist or a doctor so I can't help in those ways. I know that I won't ever find the cure to cancer. But I want to lay every single brick possible along my way so that those who can find the cure actually do. 

*   *   *

In April 2013, on the weekend that Boston went into lockdown, my family and I drove up to Bowdoin so I could speak at the American Cancer Society's Relay for Life event. Sometime after that, a Bowdoin student named Selena emailed me. Selena told me that after hearing me speak, she decided she wanted to dedicate her career to breast cancer research. Obviously I was touched beyond words.

Since then, Selena and I have kept in touch. In fact, we emailed and spoke just this past week. In one of her emails, Selena told me about her last summer internship at a big biotech company. Selena explained:

I worked in the section of the company that does genetic sequencing and I spoke with a lot of people about the newer technology they have coming out and how that will impact the world of cancer research. ... It's unbelievable what will be possible in the next few years. Huge pharmaceutical companies are teaming up with biotech companies to work on genetic analysis and how that can translate to better drugs, treatment, etc. It's incredible.

It is incredible and I don't think Selena could ever understand what that email meant to me -- how much hope it gave me this last week.

Then Wil died and an anxious anger surfaced inside me. I approached my computer tonight to try to dissect that awful feeling. In sitting here, I figured out some of it and it has to do with the commencement speech I wrote in 2002, or better yet, with the cathedral story that I describe at the beginning.

A woman is walking down the street when she comes across three men who are laying brick. 

The woman asks the first man, "What are you doing?" and he replies, "I am laying brick." 

She asks the second man, "What are you doing?" He replies, "I'm building a wall." 

Finally, the woman asks the third man, "What are you doing?" 

"I'm building a cathedral," he answers.

In the end, I know that we must lay brick to build a cathedral. I know that Selena won't cure cancer by herself and I know that even if I won the lottery and gave The Jimmy Fund every penny of my fortune, we still won't necessarialy get there. I know that cancer is complicated and that we can't save everyone. But nevertheless, tonight I want to scream from my ice-dammed rooftop how much I wish we had all the answers and could save everyone; how much I wish that we could have saved Wil.

I know it takes a long time to build a cathedral but that doesn't make the waiting and the building through blizzards any easier. Because when the world loses someone like Wil Smith, I feel like I'm standing outside in the freezing cold amid piles of cracked bricks that the rest of us didn't get assembled in time.

*   *   *

Rest in peace, Wil. In 46 short years you built an awe-inspiring cathedral and because of you, countless men and women are better equipped to build theirs too.

Thursday, January 29, 2015

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.

Monday, January 26, 2015

"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!

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.