Wednesday, May 20, 2015

Proud Mom

I love watching my son play baseball. I love watching because he loves loves playing. As I stand there swatting bugs away and watching him make great plays in the field or make a big hit, of course I'm proud. But it's funny--I mean it when I say that the pride isn't rooted in the fact that he's a pretty good little player. It's rooted in his passion and his love of the game. It's rooted in the fact that he genuinely wants to see his teammates do well. It begins with the fact that despite some blips, deep down, I know that he's a nice kid. I'm so very proud of that.

*   *   *

Last night Brian had a hockey thing so I was alone with the kids. I had recently heard that a woman in my town (who I will call "Maria") had been diagnosed with breast cancer and I wanted to visit her to drop off a card and a book (the card which contained the caveat that I never assume the book will help, but it was worth a shot). I had known Maria years ago but our paths hadn't crossed for a long time.

Teddy took his usual sweet time getting into the car and my next door neighbor was surely horrified at how I yelled at Teddy (for the 20th time) to put the basketball down and get in the frigging car. He did so on the 28th time I asked. Once I calmed down from the whirlwind of getting home from work, wolfing down dinner, and buckling the kids up for our short trip, I started to wonder if I was wrong to bring the kids on this sort of a visit.

I told the kids why we were going to visit Maria--that she was dealing with cancer and that I wanted to bring her a card to tell her that I was thinking about her. They asked me about how I knew Maria and I told them.

With the kids in tow, I made my way up to the front door. When Maria opened the door, she almost immediately started to cry. I had the most vivid flashback of myself doing the exact same thing when I was at the stage she is -- a stage that still includes so many unknowns. Teddy and Annabel stood behind me as I hugged Maria. Through her tears, she asked me if she was going to be okay and I assured her she would. I couldn't see my kids but I knew that they were watching.

I hadn't expected Maria to want to talk to me but she did, so we talked, probably for a solid 30 minutes. Meanwhile, my kids played together like angels on Maria's front lawn.

Now, I love my kids, but I would definitely peg them as of the "high maintanence" variety. They don't typically just entertain themselves, and if they do, it's not usually in a calm and peaceful way. But for those 30 minutes, they did just that. They were perfect.

When we got into the car, I thanked them for being so good. "Why was your friend crying?" Teddy asked me, very concerned.

"Because she has breast cancer and when you first learn that you have cancer it's very scary."

"Were you scared?" he asked.

"Yes, I was. And sometimes I still am. But I also know that I got very good medicines and I'm very lucky for that."

Then we drove on to a nearby field and played some catch.

During that catch, I thought about how well Teddy can throw and catch the baseball. But that wasn't why I felt an overwhelming sense of pride in him. I felt an overwhelming sense of pride because as much of a nudge as he can sometimes be, he also recognizes immediately when someone is in pain. And I can tell it hurts him to see someone suffer.

I can't be certain of it, but I'm pretty sure that Teddy will never forget watching me hug Maria on her front step as she cried into my shoulder. And I'm pretty sure that Teddy was on his very best behavior for the rest of the night because he knew that by doing so, he would help someone in pain. That is what makes me burst with pride for my son. Because while a great catch or a big hit are fun, in the end, it's kindness that really matters.

Wednesday, May 13, 2015

Hope, Panic, and Preparation

For the past 16 days I have been fine. I haven't worried much about Elaine calling with news on my genetics testing. After all, she said it would be "two to four weeks" before I got the results back. I've been around the medical world long enough to know that rarely (if ever) does anything come back earlier than expected so for the first two weeks after April 27, I successfully put the issue out of my mind. I went about my business as usual, which lately, has been so wonderfully unusual. I've worked hard on the book launch and on my job search, somehow finding time for the job that actually pays me. I've watched Teddy play baseball and lacrosse and taken Annabel to gymnastics. I got a precious two nights away for Mother's Day with my mom, aunt Helen, and cousin Kirsten. And none of it has been ruined by the dread of hearing whether my TP53 gene, or any other gene for that matter, held a mutation that led me to get breast cancer at such an unusually young age.

Last night my mom thoughtfully acknowledged how hard it must be to wait. But I had to admit that it wasn't that hard because it really hadn't been. Until this afternoon.

This afternoon, something hit me and whatever-it-was almost brought me to tears while I tried to work on a project that really needed my attention. I think it started with the realization that it could be any day now that "Unknown" or "Blocked" rings me with the news. As I tried to collect myself and get back to work, I ended up taking a short break to figure out what the heck I was feeling and why all of a sudden I was feeling it.

In those minutes of deep thought--the kind that makes everything else in the world fade to the background--I realized something that I had never comprehended so deeply before. Ironically, it had to do with hope--a concept I pretend I know a lot about. I realized that balancing hope and acceptance is an extremely difficult thing to do.

The truth is that today, I panicked. I panicked that I wasn't ready; that if the news came today that I had a genetic mutation that predisposed me (and perhaps even my children) to cancer, that I wouldn't be prepared. Because I'm not prepared. And I really like to be.

That's one thing that's so hard about hope. If you hope for something, it's hard to also prepare yourself to accept the reality of the outcome-gone-bad. So while I have been hiding from that reality or hoping that the news comes back "good," I haven't at all prepared myself for the reality that today or tomorrow or the next day, my life could take another violent turn (the kind that gives you serious whiplash). Then again, how does one prepare for those types of turns? How do we brace ourselves for bad news while hoping for the best? It's not an easy thing to do, and in the midst of all of the blessings and excitement swirling in my life right now, I panicked today at the thought that I have completely failed to do it.

Friday, May 1, 2015


Since last September, I have been working off-site at a client who happens to be located in Boston's Longwood Medical Area. This temporary change of work location has made getting to medical appointments and other meetings at Dana-Farber very convenient, if we forget this past winter, of course.

Yesterday after work, I set out for Ruggles station to catch my train home. I had a quick errand to do on the way so I left a few minutes early. (I had been in touch with Connie Britton's publicists begging her to autograph a "Hope is" sign for the book launch party and I needed to FedEx another package to them since they hadn't received the first or the second one I sent.) I dropped the package into the nearby FedEx box and made my way to Huntington Avenue.

Eager to check up on my dad who recently injured himself, I untangled my earphones and dialed Family on my phone. My mom gave me the update as I walked -- not great news for my dad but not tragically awful. I walked across a side street that emptied out onto Huntington and then, a few seconds later, I heard a loud SCREECH and a dreadfully loud BOOM. I turned around to see a red SUV flip and tumble onto its roof just feet from the sidewalk. In that split second, I instinctively thought something like, "Wow, that car flipped over so easily!" It was such a strange initial gut reaction.

Not a second later, adrenaline rushed and I ran over to the car, as did several other people in the vicinity. I could see the passenger suspended, clearly buckled in to his inverted seat. I immediately told my mom that I was fine, that there had been a terrible accident close by, that I had to go. I hung up and called 911 while a few good samaritans talked to the young male passenger and then began to try to help get him out of the mangled vehicle.

Within seconds of hanging up with the 911 operator, sirens sounded. I couldn't help but just back up and stare at the most surreal scene of the sidewalk I had just crossed. I felt like a ghost. I didn't want to look but I did, desperate to see where the driver had landed, as he wasn't suspended in a seatbelt like the passenger had been.

When I finally saw another person (who I think was the driver), I felt sick to my stomach. He was lying still on the floor of the SUV (i.e., the roof) in the back seat. There was nothing I could do -- nothing anyone could do -- as the sirens got closer and the police cars zoomed up the wrong side of Huntington Avenue.

I decided to continue on, stunned and shaken and completely helpless. I called my mom back to make sure she knew I was okay. Then I just kept walking, shocked, once again, by how vulnerable we all are as we crawl like babies around this crazy planet.

*   *   *

I wrote the prior paragraphs this morning. I have been working on the paragraphs below, however, all week; unable to make any progress on them not for lack of trying, but for lack of clarity in my own head. For some reason, however, the commute home yesterday made me want to, or perhaps need to finish what I had started.

*   *   *

When it comes to my cancer treatment, there are still a few things I'm yet to do -- "loose ends," if you will. The first one I'll probably leave undone forever. That would be completing the final step of my breast reconstruction process -- yes, nipples. I don't have them and while I figured that at some point I'd get them tattooed on, or stuck on, or whatever-ed on, I really don't care enough to make the time for whatever it would take to do that. I'm fine with the robotic look of my chest and the only other person that sees them doesn't seem to mind, either.

Another loose end, however, needs to be addressed. It involves genetic testing. 

Back in August 2012, I wrote a blog on this issue. I realized then and realize even more now that perhaps the scariest thought that cancer has induced in me is that I passed a genetic defect down to my children which could cause them to be at a high risk of cancer, perhaps even childhood cancers. I can barely type that sentence without tearing up.

When I met with Dr. Bunnell for my most recent six-month appointment, I asked him about genetic testing. I didn't remember exactly what I had done two years ago but I had heard something about genetic testing at a Patient and Family Advisory Council meeting and I wanted to get things straight.

Dr. Bunnell scrolled through my electronic health record (and scrolled and scrolled...) and finally reached a letter I had apparently received in August 2012. He printed it out and handed it to me. I don't have a single ounce of recollection of the letter, but given the Ativan I was sucking down at the time, I'm not surprised.

After some discussion, Dr. Bunnell recommended that I pursue further genetic testing. He explained that given how rare it is to develop my type of breast cancer at my age, it would be useful to check for genetic mutations that could lead to other types of cancer. If such mutations exist, I would get frequent screens (for example, colonoscopies) and maybe pursue further surgeries (including perhaps a hysterectomy). Fun stuff.

My appointment with the genetic counselor was scheduled for 8AM this past Monday. Brian and I drove in together, hit a ton of traffic, and were 20 minutes late. I almost started to cry on the way in but I couldn't tell if it was because I hate being late for important things, or because I was so anxious about the appointment, or because I was so sad that April vacation was over. It was probably a combination of all three, but I held it together.

The genetic counselor, Elaine, was excellent. She was the same person I had seen at the end of the very first day I visited Dana-Farber, but I didn't remember her in the slightest. Nevertheless, she was kind and clear and empathetic. She explained stuff about genes and about what they would look for if I pursued the possible testing. She answered my questions and didn't push me into anything. I appreciated that, and her, even if I couldn't find it in myself to look grateful.

The main issue we discussed at that appointment involved the "TP53" gene (often referred to as "P53"). According to the sheet Elaine printed out for us, "The TP53 gene is associated with Li-Fraumeni syndrome (LFS)." Basically, if they find an alteration in my TP53 gene, I have LFS, and that's not good.

The sheet explains, "Not everyone who has an altered gene will develop cancer." But a few lines later it reads, "Men and women with an altered TP53 gene have about a 90% chance of developing various forms of cancer, especially cancers of the soft tissue and bone (sarcomas), brain tumors, adrenocortical tumors, and acute leukemias." That emphasis around "about a 90%" was on the sheet -- I sure as hell didn't add it myself.

Later facts on the sheet are equally as terrifying -- "Women with an altered TP53 gene have a high risk of developing breast cancer, often at unusually young ages (prior to age 40) as compared to other women with breast cancer." Well that sucks.

What sucked even more was this -- "Both men and women carrying an alteration in the TP53 gene have a 50% (1 in 2) chance of passing it on to their children," and this, "In about 7-20% of people with LFS, the alteration in the TP53 gene is not inherited from their parents, but instead occurs as a new genetic change in that person." Well F*&K.

I burst out crying to Elaine when she brought up testing our kids if the results show I have an altered TP53 gene. I can't even fathom how awful that would be. I told her that Brian and I had decided not to get them tested even if I have LFS until there was something we could do to help them. Elaine explained that that time had come. She explained that the last few years have produced data showing that full-body MRIs for children with LFS can help detect cancer early and treat it more effectively. I couldn't even look at her after she said this. More tears.

A minute later, I got it together and told Elaine, "Let's do it."

She explained that if it's not the right time we didn't have to do it now.

"It's the right time," I told her, outwardly confident but inwardly terrified.

A short time later, they drew a vial of my blood, put a sticker on it, and sent it off to be tested. As I write this, I wonder if a lab somewhere has already begun to analyze my genetic code for defects.

*   *   *

Nowadays, I don't think too much about why I got cancer, just like I don't walk down the Boston sidewalk worried that a freak accident could flip an SUV on top of me. But every now and then, it happens -- a car flips or a paper about TP53 falls into my lap. And I stare -- scared, helpless, and uncomfortably grateful -- even though I really just want to look away.