#5

As I write this, both of my kids are upstairs hysterically crying. Annabel is screaming for her pacifier because we followed the directions of her dental hygienist, "Miss Nancy," and took it away from her. (From upstairs -- "I wannit! I wannit! I wannit!" Gasp for air ... Repeat.) Actually, today Miss Nancy suggested that Annabel "send the binkies to the Binky Fairy" so the pacifiers are sitting in an envelope in the mailbox right now. Annabel gets to choose a special gift tomorrow in exchange for her shipment to the Passie Fairy. She told us that she wants "Batman pajamas and a Superman squirty thing." I hope Brian is able to find those at Target.

To be honest, despite Miss Nancy's advice, we weren't planning this adventure to happen tonight. We figured we'd try it out in a week or two but Annabel being Annabel, she was totally psyched about mailing the passies out today, especially after she decided that the Passie Fairy knows Santa Claus. So we went with it. Unfortunately, now we're too far in to turn back.

As if Annabel's wailing isn't heart-breaking enough, Teddy is bawling, too. "I feel weally weally bad fo herw," he tells me between sobs. "I'm so sad because she's sad." I hug him and tell him what a sweet kid he is, but that doesn't help him at all.

Brian is sitting at the top of the stairs, just outside Annabel's bedroom door, intercepting her every time she tries to escape. I keep making return trips up to try to convince Teddy that Annabel is OK. On my last trip, I thought I had him in a good place when I told him that we would just give Annabel the passie if she got really upset. I figured that even though I couldn't back-pedal with Annabel, I could still pack-pedal with him. "But she's alweady weally upset," he argued. Dammit. He got me. 

*  *  *

Today Brian and I played in the Scott M. Herr Memorial Golf Tournament. There are very, very few things for which I would miss that tournament, and a surgery to remove my cancer happens to be one of them. So last year, Brian and I were absent for this very special event while a surgical team removed my breast tissue and reconstructed my chest. 

A day or two after my surgery, I remember Brian telling me that Scott's father and our dear friend, Joe, had mentioned our absence to the crowd that gathered for the after-golf festivities. We heard that Joe had explained why we couldn't be there, and that he had asked everyone to say a prayer for me. I already knew that Joe and his wife, Linda, were two of the nicest people I had ever met, but it's a genuinely special couple who thinks about their sons' former hockey coach's wife on the day of their youngest child's memorial golf tournament. And there's no doubt, this family is genuinely special.

*  *  *

Scott Herr wore the number five as a hockey player and as a baseball player at Canton High School, and given how much love there is for Scott and his family, it's no surprise that the number five has come to be a very powerful symbol of his legacy. Over the last few years, Joe and Linda have shared some truly unbelievable stories about how the number five has popped up in their lives (my favorite one involves the sun shining through the trees). Their stories give me the chills and as unbelievable as they are, I believe them completely. Maybe that's because, like so many people in and around Canton, I have my own stories about the number five. Tonight, I want to share just one.

A few months ago, I was having a tough Saturday. I thought I felt something foreign inside my chest and my anxiety was mounting. Teddy was outside with Brian and Annabel was napping. I wasn't in the mood to write so I decided to do the next best thing that helps my anxiety -- I decided to exercise. 

I drafted out a workout for myself on paper, since that's the best way I've found to not do too much or too little. I pressed Shuffle on my iPod and I made my way through the workout until I was lying on a folded up beach towel on my screened-in porch doing sit-ups. As I counted by tens in my head, Garth Brooks's "The Dance" came on over the speaker. Instead of clicking passed the song like I probably should have done, I did the opposite -- I listened to the lyrics closer than I ever had. And I completely lost it.

"The Dance" 
By: Garth Brooks

Looking back on the memory of
The dance we shared 'neath the stars above
For a moment all the world was right
How could I have known that you'd ever say goodbye?

And now I'm glad I didn't know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain, but I'd have had to miss the dance

Holding you, I held everything
For a moment, wasn't I a king?
But if I'd only known how the king would fall
Hey, who's to say? You know I might have changed it all

And now I'm glad I didn't know
The way it all would end, the way it all would go
Our lives are better left to chance
I could have missed the pain, but I'd have had to miss the dance

Yes my life is better left to chance
I could have missed the pain, but I'd have had to miss the dance

I know, I'm such a cheesy wimp. I mean We Bought a Zoo can send me into a crying fit but country music?!? Seriously? I hate to admit it but yes, seriously, these lyrics got me that day and I couldn't stop crying. No more sit-ups; just me, lying on my porch with tears streaming down my face, thinking of how much I hoped that my family would share Garth's sentiment if my cancer returned. Wishing more than anything that they would find a way to believe that the time we got to spend together was worth the pain of losing me. I was so terribly upset.

When the song was over, I sat up to try to collect myself. Then I saw something on the porch floor just in front of where I was sitting. I crawled forward to see what it was. It was a sticker. There were no other stickers, and still to this day I have absolutely no idea where this one came from. But, I swear to you (on Annabel's passie), it was a little gold #5. 

All I could do was smile and look up to the sky. Because I don't care what atheists or agnostics or anyone else says. I believe in the human spirit and I believe that it lives on after death. While I don't see any reason that Scott's spirit would waste any time or energy on me, I nevertheless will forever cherish the magic of that moment. 

*  *  *

My headache remains, but 80 minutes later, it's quiet upstairs. Brian just checked in on Annabel. He said she's sucking her thumb. And as for Teddy...tonight I realized something about him -- no matter how much he may look like Brian, he's an awful lot like me. 

Good Words: For Scott

Remember kid, there's heroes and there's legends. Heroes get remembered but legends never die.

~ "The Sand Lot" 

Platelet Tuesday

When Susan arrived to pick me up at my house last Tuesday morning just after 9am, she peeled into my driveway on two wheels (OK, maybe three).

"I drive fast, I walk fast, and I talk fast," she declared as I climbed in.

"That's OK. My mom usually drives me in so I'm used to crazy drivers," I responded, fastening my seatbelt.

"I swear a lot too," Susan cautioned.

"I don't mind in the slightest," I assured her. And we were off.

I met Susan earlier this year when I sold her a piece of furniture through my town's yard sale page on Facebook. It was only the second time I had participated in the virtual trading game and when Susan showed up at my house, I thought to myself, This lady must think I'm nuts -- I'm bald and sick-looking and so happy to help load a bed frame into her truck. But Susan didn't act like she thought I was nuts and she didn't look at my thin layer of fluffy new hair as if it were strange.

When Susan friended me on Facebook soon after, I didn't think she was nuts either, despite that I had never anticipated becoming friends with anyone via the Canton Yard Sale Facebook page. I instinctively liked this woman, and even though she was pretty much a stranger, I felt comfortable pressing Confirm to her Friend Request.

After that, Susan started following this blog and I started seeing her status pop up on my News Feed. I could tell that we shared some important opinions, especially after she published a photo of a protestor holding a sign that said, "Even if being gay was a choice, so what? People choose to be assholes and they can get married." That one, and others like it, made me laugh.

I also quickly liked Susan because she was a loyal platelet donor at the Dana-Farber / Brigham & Women's Kraft Family Blood Donor Center. I just assumed that donating platelets was something she had always done. Then, when Susan tagged me in a post and referenced my mom's Call to Arms, I thought to myself, There's no way she's doing all this because of that!?

It turns out, however, that Susan's dedication to donating platelets was inspired by my mom's request for people to visit Dana-Farber to donate platelets in my name for our birthdays earlier this year. I couldn't believe Susan's generosity then or now.

I also couldn't think of any way to thank her. So I decided that I would join Susan for one of her donations so that I could get to know her better and write about her; my way of showing my utmost appreciation for all she was doing for cancer patients at the institution I love. This is that post.

On Tuesday, I learned a lot about platelet donations, mostly from Susan, who claimed that she didn't know anything. But Susan knew a lot, including that Tums help donors when their tongue gets tingly and that the centrifuge machine makes a different noise when it is returning blood into the donor's body as compared to when it is drawing his or her blood out. I sat next to that machine for a few hours on Tuesday as Susan and I chatted about everything from our families to our jobs to the fact that nothing embarrasses her except clapping in church. She was hysterical.

One would think that a woman with two children, a husband, and four different jobs to juggle would have little time to donate platelets, never mind, to do so every other Tuesday. Indeed, Susan has every reason to declare, like most of us do, that she doesn't have the time for it. Instead, Susan tells her boss when it's "Platelet Tuesday" and that she cannot do anything until she has donated her bag or two of platelets. Susan is not a lady you mess with, and I'm almost certain that her bosses already know that.

Susan chooses to donate at Dana-Farber because they are in constant need of platelets and because the platelets are almost immediately used right then and there. I never had to have a platelet transfusion, but when my chemotherapy caused me terrible nosebleeds and persistent bloody gums, Dr. Bunnell instructed me to come in to have my platelet count tested. My platelet count was good enough, which meant that my blood would clot properly and stop my nose and my gums from continuing to bleed. Other patients aren't so lucky and so they need a bag or two of platelets like the ones that Susan has donated since February. Without those platelets, an already complicated situation would become a heck of a lot worse.

The shortage of platelets at Dana-Farber is very real, especially considering the volume of patients undergoing chemotherapy there. Since platelets cannot be frozen and are good for only five days after donation, the shortage is particularly severe during holiday weeks and times of severe weather. Also, relatively few people take the time to donate platelets, and even fewer do so on a recurring basis. Donating blood is just easier, people think, and in many ways, they are right.

On Tuesday, I saw with my own eyes that platelet donation is time-consuming, though not drastically so. The timing varies depending on people's blood flow and ratio of platelets, which they test in the first few minutes of the donation. Susan's donation was set take 103 minutes according to the computer attached to the centrifuge machine (pictured here).

Of course, adding on a 10-15 minute screening appointment and the commute, Susan spent her whole morning at the Kraft Family Blood Donor Center. In fact, around 12:15, I had to leave to hop on the Green Line to work, and when I left, Susan was still in her chair squeezing the little red ball that they gave her to keep the blood flow in her arm up to speed. I don't want to downplay or exaggerate the time commitment, but in the end, four to five hours every other week is significant, to almost all of us, including Susan.

"I don't have money to give, but I can give this," Susan explained, "so I do." Even better, she encourages her friends and family to come with her. There's a Wall of Champions in the Kraft donor center, covered in photos of the most loyal donors. I have a feeling that Susan will be on that wall one day.

Susan is a special lady, and I love that she grew up in the neighborhood that I now live in. That just feels like good karma. Plus, she introduced me as a "cancer survivor" to all of the nurses that she knew by first name in the donor center, and I loved how confident she sounded when she said that.

I also loved that Susan protected me like a mom would. When one of the nurses remarked that I was "so young" to have breast cancer, then started talking about a TV program she saw about the increased incidence of breast cancer in young women, Susan immediately put her hand up towards the nurse and instructed her, "Stop! Don't scare her!" The nurse covered her mouth and didn't say anything more. When another nurse went to heat up a warm pack in the small microwave that was right next to me, Susan told me to move away while the microwave was on. The rational part of me doubts that a microwave could cause a recurrence of my cancer, but I can't explain the comfort I felt knowing that I wasn't the only one with another part of my brain that thinks it could.

Susan's parents raised nine children, so clearly heroism runs in the family. Her mother survived bladder cancer and breast cancer, but leukemia finally took her life several years ago. Now, Susan's father is very ill and just before I left her on Tuesday, she was texting with her family members about how they were going to coordinate with hospice to take care of him. I know that Susan had a hundred things to do that day, and as I ran out to work, Susan was still sitting in her chair as the big machine took out her blood, spun off the platelets, and returned the blood back to her. But Susan never complained, because it was Platelet Tuesday. And on Platelet Tuesday, along with swear words, broken speed limits, and an excessive amount of Tums, Susan makes the time to save lives. She gives something that no factory can produce and no medicine can replace. It's what she can do. So every other Tuesday at 10am, she does it.

If you or anyone you know may be interested in donating blood or platelets at Dana-Farber / Brigham & Women's Kraft Family Blood Donor Center, please call 617-632-3206 or email blooddonors@partners.org.  A staff member will get back to you and you too could become a champion to cancer patients in need of your platelets. 

I took this photo on Tuesday night when I was back at Dana-Farber for a meeting. It's hanging in a hallway of the Dana building.  I don't have the words to explain what a photo like this, and the handwritten note above, means to a "cancer survivor" like Susan says that I am. I love this photo because I share Jack's sentiment of thanks for so many people, including, obviously, for Susan. 

Never Forget

One year ago tomorrow was my Checkmate Day; the day that my cancer was extracted from my body, the day that I was finally able to start fighting back. While I was keenly aware of my diagnosis anniversary as it approached, this one seemed to surface out of no where. That small realization -- that I will not always see this year as a reflection of last -- feels like a gigantic and unexpected victory. 

Of course, today is still a powerful anniversary, not in my cancer battle, but in our nation's history. I have never written about 9/11 but tonight, I want to. To be honest, I never expected that, either. 

*  *  *

Until this past month, I wasn't aware of the significant hype surrounding the first day of kindergarten, more so for the parents than the kids, perhaps. All that hype made me smile, but truthfully, I wasn't feeling the nostalgia, the anxiety, or the sadness that it seemed like other parents were feeling (can you say, Effexor?). Even Brian was having a tough time with the thought of Teddy going off to kindergarten, particularly, he told me, with the thought of Teddy trying to buy his lunch in a cafeteria full of kids that were bigger than him. I just laughed at this and told him that Teddy would be just fine. 

I realized how much I am like my mother when I didn't feel much emotion about my oldest's fast-approaching "first day." I had dropped Teddy off at day care since he was a few months old so it wasn't like this was the first time that he and I would spend our days apart. 

Perhaps because I hadn't built it up in my head as one of my grand visions, getting Teddy ready for kindergarten this past Monday morning was wonderfully precious. He was nervous, which was not only adorable, but it also meant that he wasn't feeling confident enough to be a pain in the a$$. That, in turn meant that he actually got dressed, ate his breakfast, and put his shoes on when I asked him to. Talk about firsts. 

When we heard the bus humming down the street, I saw Teddy jump up and down a few times. Then he climbed up the bus stairs, and was gone before I even knew what had happened. 

Immediately after the bus pulled away, Annabel was hysterical. “Teddyyyyy!!!" she screamed with elephant tears streaming down her face. "Whe-a did he go? I want him come baack!! Teddyyyy!! Come back!!!” she wailed in Brian’s arms. 

Brian quickly handed our screaming child to me so that he could rush to school. My mom had stopped by to see the action so she and I were left alone to console Annabel. My mom’s more the Oh, you're just fi-ine type, which I admit, can be very useful (see above), but sometimes I’m a bit more "granola-crunchy," as she likes to say. I've gathered that "granola-crunchy" is a term she made up, and I'm pretty sure that she uses it to mean that I explain things to my kids when she believes that "Oh, you're just fi-ine" would suffice. 

“He’ll be back later today; he just went to school,” I explained to Annabel as she continued to sob. "Did you want to be here when he gets off the bus?" I asked her. But she was too upset to answer. 

Brian was upstairs changing Annabel when Teddy’s bus pulled up to drop him off later that afternoon. When Annabel heard me yell, “Buh-us!” she leapt out of Brian’s arms before he even had a chance to hand her a clean shirt. As I walked down the driveway to meet Teddy, I turned around to see a tiny bolt of skinny whiteness and Lightning McQueen pajama pants flash by me.

“Teddy! Teddy! Ted! Ted! Ted!” she squeaked in the purest form of excitement I have ever seen. She was so happy to see him that she literally couldn’t get his full name out. 

The remaining kids on the bus looked out their windows in utter confusion, trying to figure out why this kid was half naked and why she was so excited. Their faces were priceless, as was the little scene I saw when I turned around. My two kids were standing in the driveway hugging each other.

“I love you, Ted,” Annabel declared.

Teddy let out a smile even though I think he was trying not to.

“Love you, Boo,” he replied. 

I will love that story as long as I live, and even more so on days like today when our two little cherubs bickered for most of the morning.  

*  *  *

Like many people young and old, I remember September 11, 2001 as if it were yesterday. My memories are not like a story that flows gracefully from one scene to the next. Rather, they are like short video clips set to slow motion. I remember so many of those clips, from just after 9am on 9/11 and through the days, weeks, and months afterwards. But there's only one of those clips that I want to write about tonight.

On the morning of 9/11/01, I was a senior at Bowdoin College, sitting in a class that I can't even remember. In fact, I really don't remember much about what I first heard or how I heard it. I just remember leaving class and thinking that the sky was so blue. I remember feeling like it was far too beautiful of a day for something horrible to happen. 

After that, my memories get blurry -- I got a ride back home from one of Brian's friends who knew lots of people in New York. I remember sitting there trying to think of everyone that I knew in New York and praying (yes, praying) that they were all safe. Then I remember watching the news from behind my hands. Brian was there with me by that point and I remember being so thankful that he could watch what I was not able to. And then I remember that kicked-in-the-gut feeling that my entire world was on the verge of ending. That thought came when I heard something about a plane near Washington, DC, possibly, heading for the White House.  

My slow motion video clip stops there. It freezes on the carpet that covered the stairs in me and my friends' apartment. I remember sitting on those stairs, fixated on that carpet. And I remembering thinking about my sister and realizing that if anything ever happened to her, I didn't know how I'd ever get up from there. 

On 9/11/2001, my sister was a student at The George Washington University. Having visited her several times, I knew how close to the White House she lived and worked and went to class. And so I remember that carpet through my shaking hands, and the newscasters' repeated frantic reports of a plane or even planes targeting our nation's capitol, and flashes of my sister's face. Twelve years ago today, tears streamed down my face as the thought of losing my sister terrorized me. 

This week I am reminded of one of the most precious gifts in the world -- the love for and from a brother or a sister. In the most tragic of ways, I remember that love every time I think of 9/11. I remember how relieved I was when I finally heard that Rachel was OK and, weeks later, when I finally started to trust that no other planes were going to be taken. I cannot even fathom what others have endured if they were not blessed with the news that I received. Even now, 12 years later, I cannot comprehend that thousands of brothers and sisters lost a brother or a sister that day. 

We are very blessed who have loved, and been loved by, a sibling. Even though on most days I remember that, on 9/11, I never forget it. 

Ready, Set, Let Go

Last Wednesday as Herceptin flowed into my IV, my Mom and I looked at our calendars. We were curious how many more infusion treatments I will have at Dana-Farber. We remembered that my first chemotherapy and Herceptin infusion had taken place on October 10, 2012. So we knew that the one year course of treatment was almost complete. 

By our estimation, I have two infusions left -- the penultimate one on September 25th and the last-and-final on October 16th. There may be one more, considering the almost two-week delay I experienced after my allergic reaction, but we doubt it, and we do have zero medical degrees between the two of us. Dr. Bunnell, the one who actually knows what he's talking about, will tell us my schedule at my next appointment, although if I really wanted to know now, I could just call him. 

*  *  *

A few months ago, I had a chance to sit down for lunch with a young woman who I will call "Carrie." Carrie had been a patient at Dana-Farber 13 years ago, and while so much of my lunch with her was wonderfully memorable, there's one thing that she said that I will never forget. 

We had got to talking about how much we love Dana-Farber and how much that institution gave to us. We talked about how safe and secure we feel when we're there, which is crazy given that at first, I didn't think any place on Earth could have been scarier. 

Carrie told me that the first few times she visited Dana-Farber for scans after her treatment was complete, she wanted the scans to reveal cancer. Not a lot of cancer, and definitely something that they could fix, she explained. But if they found cancer, I could keep on being treated there, and I would be safer with them watching over me. 

I laughed with Carrie about this, not because I thought she was nuts, but because I so sincerely understood how hard it is to let go of the place and the people that saved your life. 

*  *  *

Teddy and I visited Dana-Farber together today so that we could walk the three-mile route of the Jimmy Fund Walk with other patients and their families. A DJ was blasting great music on Jimmy Fund Way and I enjoyed embarrassing Teddy with my goofy dancing (the goofy part is not necessarily purposeful). He played games along Brookline Avenue while I munched on the popcorn and ice cream that he asked me to hold. When I first walked into the Yawkey Center two Augusts ago, I never could have imagined that one year later I'd be dancing and eating ice cream in the very same place. And I certainly never imaged that my son would be smiling with me there, having successfully thrown beans bags into the holes of a wooden box. 

Today's walk was nothing short of magical. Sure, Teddy didn't want to hold my hand (after all, he is starting kindergarten tomorrow), but he was always keenly aware of where I was and he seemed so proud and satisfied when he asked me a question to which I actually knew the answer (or so he thought). For example, "Who paints the yellow lines on the street?" "Why are there people at Fenway if the Red Sox are in New York?" "Why was I born at the same hospital that you and Daddy were born at?" I had to think on my feet, literally!

Teddy doesn't just like to ask questions; he also likes to tell me a thing or two about a thing or two. So he told me about Fenway Park and about why the Green Line was sometimes above ground and sometimes below ground. He showed me the general direction of "the place where Papa bought his new caw," and he insisted that I take photos of him in front of the Citgo sign. As we walked alongside people who had literally just walked over 24 miles (we had walked one), Teddy informed me that we had walked a weally weally long way. That kid totally cracks me up. 

Speaking of cracking me up, just last week I was cleaning the living room while the kids watched, critiqued, and continued to add to the mess. As I repositioned my healing chair from the horizontal position that the kids often maneuver it into, I scolded them. "Please do not play with this chair because you are going to break it!" 

Teddy had an immediate response.

"Well, Mom, you don't have bweast cancew anymow so we don't even need your chairw." He could see that I certainly wasn't going to argue with that. But he couldn't see that my heart had basically just melted inside.

*  *  *

I know how crazy this may sound, but just like Carrie wasn't embarrassed to admit her truths, I can't be embarrassed to admit mine. 

My truth is that while every fiber in my body wants to be cured, part of me is also afraid of being without the people, the medicine, and the institution that cured me. Part of me is terrified, and maybe even oddly nostalgic, to admit that I no longer need my healing chair even though I so desperately do not want to need my healing chair ever again.  

I was strangely proud to check-in at the registration table today as a current patient of Dana-Farber. But I realize now that mixed in with that pride is a huge amount of comfort. At Dana-Farber, I know that I'm in the very best hands. So maybe it's only natural that I wouldn't want those hands to let me go. 

I recently learned that half of Dana-Farber's work is pure research. I had no idea. I also had no idea that for the past 25 years, thousands of people have walked the Jimmy Fund Walk to raise money for the institution that saved my life -- for the research and the clinical care that I hope and pray has cured my cancer. 

When I check in at the Jimmy Fund Walk next year, I will still be a patient of Dana-Farber. But, if I am lucky, I will be a much more distant patient. While that distance scares me, I realized tonight that it will still allow me to walk every September so that the Jimmy Fund and Dana-Farber can continue to save lives.

That distance will also not deprive me of my right to wear the pin that I wore as I walked today; one that boasted, "I'm Living Proof." Yes, I am, and so were the children and teenagers, young parents and elderly people that walked alongside me. Even as my patient relationship with Dana-Farber changes, I hope that I always feel pride and comfort in knowing that I'm proof of the success of cutting edge research and world class clinical care. And Teddy, who has already declared that he wants to walk again next year, will always be proof of how important all of that really is.

Getting ready to walk...