What (I Think) You Want to Know -- Part Three

...continued...

7. What were some of the most (and least) helpful things that people did for you this past year? 

I'm pretty sure the person who asked me this meant "people" as those beyond my primary caregivers, so I'll answer it that way.

When I was first diagnosed, my best friend (Brianne) set up a calendar through an incredible site called MyLifeLine. She emailed the link to our family, friends, and colleagues and they signed up for particular days to cook us dinner or drop off snacks. Each meal and each snack was indescribably helpful -- both to me and to Brian. The fact that it was organized into a nice neat schedule assuaged by type-A personality as it ensured that we wouldn't have to waste food that we couldn't consume in time. 

Otherwise, the most helpful thing that people did for us was to send messages that gave us hope that everything would be OK. I never understood the concept of hope prior to having cancer. I know now that it is an indescribably precious gift. 

While it may be possible for me to list the hundreds of things that people did for us to help make a very rough time more smooth, I could never express how meaningful each of those things were to us. From bringing me homemade cookie dough (after I wrote about my doubts that I could make it myself) to dropping off scratch tickets (since it was time for my luck to change) to giving me a hug that said I care, each and every kind gesture made it easier to cope. 

The least helpful thing that people did was mention experiences with cancer that ended in someone dying from the disease. I know, those people are entitled to their stories and if I were stronger, I would have put aside my own feelings and acknowledged theirs. But before you're pushed out of the skydiving plane, you don't want to be told that the guy before you had his parachute break (sorry, I couldn't help but use a metaphor).  

8. What have you told your kids about your cancer?

That I had it in my boob; that my doctors did a surgery to take it out; that the medicine they gave me afterwards made my hair fall out; and that I continue to go to get my medicine every three weeks (like I did today) so that the cancer never comes back.

Annabel doesn't get much more than the boobie and the going to the doctor part. But at five-and-a-half, Teddy gets a lot more. About a month ago, he told me he wanted to show me something on TV. He grabbed the remote, found his way to the MLB Game Highlights on Apple TV, then scrolled his way to a baseball game (in Chicago, I think) where players used pink gloves and the crowd received free pink hats or shirts or something for breast cancer. See Mom, it's fo bweast can-sew, he explained. I had been expected a no-hitter or something like that. But him finding me that game was so much more amazing than a no-hitter.

9. Have you done anything to prepare for your own death? 

Yes, but not because of cancer. I had purchased life insurance a few years ago and Brian and I had a will drawn up after Teddy was born. I admit, a few months ago I saved a document on my computer entitled, My Funeral. It's a work in progress, and I don't work on it in any sort of morbid or time-consuming way. But if cancer or a meteor or a slip in the shower happens to take me, I don't want my family stressed over what I would have wanted. So I've laid it all out to spare them any more pain. Plus, I think they'll have a good laugh over some of my choices. Sure, most people don't play upbeat music at funerals, but if my instructions say to, please abide by them.

10. Did cancer change you? If so, how?

No. But writing about it really, really did. How? It made me so much more alive.

What (I Think) You Want to Know -- Part Two

...continued...

2. Is your cancer in remission?

Although I often hear the word remission in the regular world, I have never once heard any of my doctors or nurses use it. To be honest, I'm not exactly sure why that is and since I still refuse to research anything about cancer, I don't have any great clinical explanation. What I do know, however, is what my oncologist, the Chief Medical Officer at the Dana-Farber Cancer Institute (Dr. Bunnell), has told me (after I told him not to tell me anything bad). And Dr. Bunnell has explained to me that the "overwhelming odds" are that chemotherapy and, more importantly, Herceptin, will cure my cancer. We're not putting the cancer to sleep and waiting for it to awaken one day; we're defeating it. For good.

The first time that Dr. Bunnell ever mentioned my cancer coming back, I told him that I wouldn't have breasts anymore. So how could that happen? He explained that the cancer could come back elsewhere in my body; on my chest wall or in my brain, for example. It would still be breast cancer, he explained, but it would have metastasized. Well, crap. Was I the only fool who had assumed that cutting my boobs off meant no more chance at breast cancer recurrence? Lesson learned, I guess.

So we arrive back at that HER2+ test result. My tumor tested positive for a protein known as HER2; a protein that, if left to its own vices, will lock on to healthy cells in the breast or anywhere else, and turn healthy cells into cancerous ones. In 2005 (so says Brian who researched it), a miracle drug called Herceptin came onto the market. Herceptin changed everything for women with HER2+ breast cancers.

Herceptin includes (or is?) an antibody that is literally attracted to the HER2 protein. Once the two meet up, Herceptin prevents the protein from locking on to healthy cells. It stops cancer. For the luckiest 99% of women with tumors similar to my grade 2 tumor, Herceptin has been shown to cure breast cancer (at least, in one study that Dr. Bunnell has cited several times).

3. When will you be all done with treatment?

I will have completed my one year of Herceptin infusions at the end of October. I'll take my daily dose of Tamoxifen until January 2023.

4. How much do you worry about dying?

Now, I can go several hours without worrying about it. I used to not be able to go a single minute, so I’ve made great progress. My worry and fear come in all different forms, from light and manageable (the common kind) to overwhelming and necessitating a good cry or, on a really bad (and thankfully, very rare) night, an Ativan.

The hardest part of the worry now is that my guard is down; my armor is under the bed, as a great friend explained to me. I’m back in the real world and there, death-by-cancer is all around. I won’t lie; it’s really hard to hear that someone died of breast cancer. When that happens, I still feel a few minutes of suffocating fear. Then, with a pit in my stomach, I carry on, and gradually that terrible feeling goes away.

Since I often have my own mortality on my mind, sometimes I kind of feel like a ghost of myself. For instance, when I get home at night and I hear Brian giving the kids a bath, I smile, but I also tear up inside. Every night, when Annabel asks, You guys going’ any-weera? my heart aches a bit and I pray to God that I’m not. It’s really hard to imagine being absent for all of that, or better yet, it’s too easy to imagine it, and I really don’t want to.

5. Do you have any regrets about your treatment or surgery? 

No. Not one. I was blessed with easy access to one of the best cancer institutes in the world (if not the best). I have the utmost faith in my core medical team. And while I have hit bumps in the road like anyone going through serious medical treatment, there’s nothing that I could have done to avoid those things.

If I had to stretch my answer into something I don’t care all that much about, I'd admit that the whole adding-the-nipples process is totally inconvenient. Sometimes I think it would be nice to look a bit less robotic in the chest area and the big scars can be reminders of times I don't want to remember. But at this stage, I wouldn't take time off of work or away from vacation so that my plastic surgeon can create new nipples for me. (Out of Office auto-reply: Thank you for your message. I will reply as soon as I have nipples. Nah, that just doesn’t work.) So if my nipple-less figure ever really starts to bother me, I know I can just call Dr. Chun and make an appointment to explore my options. For me, that’s enough of a solution for right now.

On a more serious note, I have the right kind of regret for the fact that I did not harvest my eggs prior to beginning my treatment. If I knew what I know now (that my cancer hadn’t spread and that the Taxoxifen was going to be a 10 year course), I may have done so, but life doesn’t have a rewind button. In the end, I have faith that if Brian and I want to have a third child, we will have one. He or she won’t have our genes, but I’ve come to realize that genes are a small detail to the concept of family.

6. Can you have any more biological kids? If not, why not?

Like any woman, I’m not entirely sure, but I think that it would be physically possible, yes. While the treatment I have received sends some women into early menopause, it hasn’t done that to me (at least, not yet). But it’s not as easy as that.

Dr. Bunnell believes that I should stay on Tamoxifen for 10 years and he said that I should absolutely not get pregnant while taking the drug; something about how they don’t know how it would effect the fetus, I think. Since I started Tamoxifen when I was almost 33, that means I’ll be 43 when I complete it (with faith). If I have not gone through early menopause by then, there’s a chance I could have a baby. But while 43 is not “too old” for some women, I think it’s probably too old for me.

Had I harvested my eggs, we could have tried to find a surrogate mother to carry embryo(s) that the fertility clinic could have made with Brian’s little swimmers. But we didn’t do that because, just days after being diagnosed, the process of injecting me with hormones and extracting my eggs was not a top priority. Especially when I had just been told my cancer was hormone-receptive and they did not yet know how far it had spread.

A few appointments ago, I was given a clip board of information asking me if I’d like to take part in a clinical trial at Dana-Farber. If I enrolled, I would stop taking the Tamoxifen after 18 or 36 months, try to get pregnant, then go back on the Tamoxifen once I had a baby. I do not judge women who choose to take part in that study and if I didn’t have my own children already, I may very well have considered it. But for me right now, it doesn't feel like the right thing to do. Adopting, on the other hand, very much does. And if it's a girl, I've already picked out her name.

To be continued...

7. What were some of the most (and least) helpful things that people did for you this past year?

8. What have you told your kids about your cancer?

9. Have you done anything to prepare for your own death?

10. Did cancer change you? If so, how?

What (I Think) You May Want to Know -- Part One

Last Fright night, Brian, the kids, and I had the pleasure of sharing pizza and a few hours of laughs and conversation with a wonderful couple who is going through a very difficult time. Our friend, one of the most popular guys in town, was recently diagnosed with ALS. After weeks of wondering what I could do to help, I asked him if he would like me to write about his life, not for my blog, but just for him, his wife, and his extended family. Our friend hesitated, and I completely understood. A few days later, though, he said yes, and we made a date for take-out on our screened-in porch.

I sat with this tan and handsome couple as the sun set on a sweltering summer night. I asked lots of questions about how they met, their relatives, their pets, their favorite vacation spots. After they left, I also realized that I had so many questions that I had carefully edited out of the evening. I wondered what ALS felt like; how our friend was coping with his diagnosis; how his wife got herself through the hardest times. Those questions led me to this post.

I am very aware that even in my non-steroid-induced blogs, I often blab on. I write stories and metaphors and quotes and…blah blah blah. Anyone who arrives at this blog now, having missed the first...wait let me check...the first 249 posts, is likely just overwhelmed. I agree, it’s pretty overwhelming, and I've covered a lot of ground here in the last eleven months.

(Please note: Thanks to my brother, there’s a little Search bar at the top of the blog page and if, for instance, you want more information about a double mastectomy, you can type that phrase into the box and all of the blogs in which I mention it will pop up.)

In the next blog or two, on the heels of a post about how much I want to be myself, I’m going to try hard to not be. I’m going to get to the point—no metaphors about snow or stories about people I love or montages that will make you cry. Instead, just straightforward answers to ten questions.

These ten questions are ones that I have been asked several times, or ones that I’m almost certain people have wanted to ask but never felt it appropriate to do so. They are questions that I'm sure I would want to ask if I wasn't going through this myself. I could write (or maybe have already written) a lengthy post responding to each one of these questions. But in the upcoming few posts, I'm going to answer these questions succinctly because despite my usual blabbing, I really do believe that there is great value in brevity.

One last point. I was reminded on Friday night that people with serious illnesses can be intimidating in an odd and endearing sort of way. For many people, we are living proof of one of their worst nightmares; of the reality that none of us will live forever. They think that we're fragile, both physically and emotionally, and they're scared that something they say or do could hurt us. Yes, I guess it could. Maybe it's just easier to stay away, they may think, consciously or subconsciously. But the brave ones come close anyways.

I understand from my own experiences in the kingdom of the well that people in the kingdom of the sick may seem more complicated than everyone else. I hope that this blog, along with the hundreds of others, help us all remember that ALS, cystic fibrosis, HIV, cancer, or any other potentially terminal illness are all just circumstances. They don’t make us less of a person or more of one. They just make us all more aware of what it really means to be alive.

*  *  *

What (I Think) You May Want to Know

1. Did you ever feel that you had cancer?

Nope. I never felt sick or tired or anything. I just felt a lump in my left boob the very first time that I checked my saggy pancakes for cancer. I would have thought the lump was just a normal part of my boob except that I didn't feel the same thing on the other side. I figured asymmetry was bad. Turns out that it was.

To be continued...

If you have a question you'd like to add to this list, please comment below. 

2. Is your cancer in remission?

3. When will you be all done with treatment? 

4. How much do you worry about dying? 

5. Do you have any regrets about your treatment or surgery?

6.  Can you have any more biological kids? If not, why not? 

7. What were some of the most (and least) helpful things that people did for you this past year?

8. What have you told your kids about your cancer?

9. Have you done anything to prepare for your own death? 

10. Did cancer change you? If so, how? 

The Balancing Act (continued)

When I was 22 years old and fresh out of college, I landed my dream job -- a full time position to teach Social Studies at a public high school (which happened to be my alma mater). World History and Economics would be my subjects; sophomores and seniors would be my students; and Canton High School's "A building" would be the place I would spend my days.

As a first-year teacher, I was assigned a mentor and lucky for me, I got Mr. Healy. Mr. Healy had been my U.S. History teacher and one of my basketball coaches when I was in high school. I had (and have) the utmost respect and admiration for Mr. Healy which is probably why I have never been able to call him by his first name despite that several times, he told me that I should.

I'll never forget the first time I went to Mr. Healy with a true I-can-only-ask-this-to-my-assigned-mentor type of question. It was the day I got my first paycheck, back in the fall of 2002. At an annual salary of just over $28,000, I figured the amount on the check wasn't going to be huge, but when I opened it, I felt happy-shock. It was somewhere around $650. $650 a week! I was going to be happy and rich!

Then it dawned on me. Was the check for one week of work or for two? I couldn't glean the answer from the check or the stub, nor did I fancy myself capable of doing out the math, especially considering the complicating factors of taxes, benefits, union dues, and mandatory contributions to state retirement plans. So I went to the person I was formally allowed to be dumb to -- Mr. Healy.

It's for two weeks, he explained matter-of-factly.

Then we enjoyed a good laugh together.

I taught at Canton High School for five years after that. I loved that job as much on my last day as I did on my first. Actually, I may have loved it even more.

*  *  *

Mark recently shared an article with me by Paul Graham entitled, "How to Do What You Love." It's a must-read and must-discuss article; just the type that makes me start to draft 15 different blog posts in my head. 

Paul Graham writes:

The test of whether people love what they do is whether they'd do it even if they weren't paid for it—even if they had to work at another job to make a living. How many corporate lawyers would do their current work if they had to do it for free, in their spare time, and take day jobs as waiters to support themselves?

I will never forget thinking to myself sometime during my second year of teaching that even if I won the lottery, I'd keep teaching. I so sincerely believed that. 

At some point, however, something changed. It must have, because when I was offered a job paying exponentially more than my teaching salary, I took it.

Despite the countless times at Ropes & Gray when I wished I could go back to teaching, I will never regret the decision to leave. That decision lead me to where I am today -- to a life I love. It also laid out the billions of different factors that made me find my cancer before it had spread. Still, I find myself pondering my own life decisions, especially the ones that I didn't ponder much at the time. It's kind of like reading a novel and wondering about a character's motivations; I'm only just now learning more about mine.

The How to Do What You Love article helped me realize that my instinctual decision to leave a teaching job that I loved for a corporate lawyer job that I knew nothing about was about something more than just money. I hate to admit it, but I see now that it was also about my ego, my confidence (or lack thereof), my need to prove something to someone. It was about prestige. 

Paul Graham explained, Prestige is like a powerful magnet that warps even your beliefs about what you enjoy. It causes you to work not on what you like, but what you'd like to like. 

As a third year law student and a fourth year teacher, I was, not fortunately or unfortunately, pulled by the forces of that magnet. I listened far too closely to the tone of people who were impressed by, and maybe even jealous of, the fact that I had a call-back interview at Boston's top corporate law firm. I looked far too superficially at the vision of the life the firm painted for me -- the biggest clients, the most interesting projects, the highest salary, the smartest colleagues. The most prestigious reputation. The happiest life. The forces of that magnet were strong and I was too weak and too ambitious to fight them.

Let me be clear -- by fighting those forces, I don't mean that I necessarily would have turned down the job. Even if I had resisted the forces of prestige, I very likely would have taken the job at Ropes & Gray. I've never had to pretend to love learning new things and facing new challenges; that love is very natural for me.    

From the very beginning, I tried so hard to like being an associate at Ropes & Gray. I wanted to like it so badly; wanted to make that happiest life come true. But for me, the vision was about as real a reality as was my vision of buying summer books at Barnes & Noble. Often, I felt like I was trying to change a diaper without a diaper bag. 

I learned early on that I just couldn't like what I didn't like. And I didn't like that most partners were so busy that they rarely had time to talk or teach or eat lunch away from their desk. I didn't like a culture where humor, quirkiness, and self deprecation were rarely (if ever) interjected into a work email or a conference call (there were lots of hilarious emails exchanged amongst friends but I think most of us feared that someone was sitting in a cubicle somewhere being paid minimum wage to read what we wrote, and that took a bit of the fun out of it). I preferred a culture of balance and family values to an institutionalized program to which I could apply so that I could go home at night to have dinner with my family. In the end, I just didn't like that I couldn't be me.

Paul Graham continued, Prestige is especially dangerous to the ambitious. If you want to make ambitious people waste their time on errands, the way to do it is to bait the hook with prestige. Saddled with debt, and worse, with a pathetic desire to prove that I could do something more (whatever that meant), I took the bait and paid the price. I learned very quickly that there was nothing more about being a lawyer than being a teacher. OK, there was more money, but from my view in big law, there was a whole lot less of so many other things that were far more important -- things like creativity, humor, balance, comradery, and fulfillment.

*  *  *

When I decided that I'd start to plan my exit from big law, I also decided that I'd give the lawyer thing one more shot. Truthfully, I wasn't going to leave Mary or Wendy before I was done with what I needed to do for them, and law school was too expensive and time-consuming to let my first job be the reason to throw it all away. Plus, we really couldn't afford for me to take a huge pay cut, and I understood that.

I had never heard of Verrill Dana until I learned that a partner from Ropes was going there after he reached the firm's mandatory retirement age (that doesn't mean much since "Ropes & Gray" didn't ring any bells for me prior to on-campus interviews, either). When this partner first talked to me about the Maine-based firm, I never dreamed I'd join. I was waiting for something more; again being pulled by the dangerous forces of prestige. The first time that happened, I was immature and inexperienced. The second time, I was just a complete idiot.

On a fall day in 2011, something changed for me. Actually, it's wasn't so much a change as it was a culmination of three years of observation and experience. That day, I saw with the utmost clarity a culture that viewed work and life as separate, with work coming first in most instances when the two collided. I finally understood, clearly and consciously, that life and work would never be separate, and that it was time for me to find a culture where people found a way to fit work comfortably into life. There was a balancing act there, and I've never claimed it was or would be easy. But I was done pretending.

So I had lunch with the former Ropes partner who now chaired the health care group at Verrill Dana. I listened to what he had to say and I did my research. I looked at his bio online and I found it remarkable that he spoke about his family. I learned about his work. Much of it was similar to work I had done at Ropes, but everything about it felt different -- manageable, efficient, dynamic; for hospital clients with missions that I believed in. Then I met Mark. I was sold five minutes into our conversation, not by the fascinating projects that he told me about, but by the sincerity and humor with which he described them. Once I met other partners who were so impressively smart and kind and content, I knew I had found a culture that was just what I had been searching for. Maybe Verrill Dana hadn't become uber prestigious in Boston (just yet), but I didn't care. The forces of the magnet had died and I had come alive.

Now, I like going to work, not because I want to like it, but because I just do. I'm so grateful that I can stop to talk to awesome colleagues like Andy, one of my closest friends, without worrying that someone will consider that time "wasted" (except maybe Andy who has every right to want me to stop bugging him all the time). I'm so grateful that I can work through difficult legal problems collaboratively; that I can help to build something with people I trust and respect and want to be like. Most of all, I'm so grateful that I can be myself.

In the end, I realize that the world is full of forces that try to pull us and push us in all sorts of different directions. Sometimes those forces do us good, sometimes they do us harm, and often, we're not even sure which one it is at the time. I don't claim to be immune to the bad forces and alert to the good ones. I just know that finally, I can see the difference between liking what I do and wanting to like it. I can see that there's a really, really big difference there. And I know that I'm not going to waste any more time thinking that someone else's opinion of me is more important than my own. Especially when I can't even put my finger on who that someone else even is.

*  *  *

Next Day Follow-Up

3:00pm

Mark is on vacation, but I just cc-ed him on an email.  His Out of Office message popped back to me as follows:  

I will be away from the office until July 29.  All efforts to reach me are foredoomed.  For the illusion of contact, please get in touch with my assistant ...

I mean seriously, how awesome is that?!?

The Balancing Act

In the three or four months right before Annabel was born, I was the least healthy I have ever been, and that includes having cancer (kidding, sort of). I was a third year associate at Ropes & Gray, and I was working more than was humane. I was big and swollen and unable to walk up a flight of stairs without panting. In the fall, I developed a hacking cough. I coughed for weeks, so much so that I developed a terrible pain in my chest. Still, I kept working.

Most nights, I’d run (OK, waddle) home to catch Teddy for a short time before he went to bed. I'd give him a bath and try to clean the dishes while he had his snack. We would read a book and as Brian finished up the bedtime routine, I’d log in again.

At about two or three in the morning, I'd make a list of the tasks I hadn't completed that I should have, and I'd go to bed. A few hours later, I was up and at it all over again. 

About once a week, when I got so desperate for sleep that I’d even sacrifice missing Teddy, I’d stay late at my office. I'd talk to Teddy before Brian put him to bed. He'd cry and beg me to come home. I'd tell him that I would see him in the morning and that I loved him so much. 

After I hung up, I'd turn my chair away from the glass that separated me from the hallway and I'd cry too. Then I'd clean myself up and travel up to the 49th floor for my “free” dinner. My ankles would balloon just a few minutes later thanks to the overabundance of salt in the cafeteria food. 

On those late nights at my office, I felt trapped and claustrophobic and empty. Around midnight, I would crawl out of the eerily quiet hallways of the Prudential Center, overtip on my cab voucher when I reached my car at the deserted train station, and wait for the nauseous feeling from the ride home to fade. There was only one thing that could make me smile on those lonely nights -- kicks from the baby inside me -- and whenever that happened, life was good again.

I remember walking to my car at the train station one late Friday night a few weeks before Thanksgiving. I had absolutely no excitement for the upcoming holiday, mainly because I figured I’d have to work (I did). Then I just got sad. How had I let this happen? How had I pushed myself to the point that holidays, even my most favorite holiday, felt like a burden?

I was still coughing and since I couldn’t find the time to visit the doctor during the work week, I decided to make an urgent care appointment the next day.

At that appointment, the doctor did a blood test to be sure that a pulmonary embolism was not at the root of the chest pain. When the test came back positive, I was told to head straight for the emergency room.

I remember lying in the ER feeling the baby inside of me and begging some higher being to keep him or her safe. I remember the CT scan and I remember the doctor telling me, Brian, and my Mom that they did not see a blood clot, but rather, a fractured rib. Thank goodness. I had never been so relieved. 

I worked the next day, from home, and traveled into the office the day after, with a rolling briefcase that Brian bought me from Marshall's. 

Almost exactly two years later, my neutropenia landed me as an inpatient at Brigham & Women's Hospital for almost a week. I remember lying in my bed, feeling the bump on my sternum that my PCP had assured me was only torn cartilage, a lasting reminder of my terrible cough from a few years prior. 

I hadn't yet pointed out that bump to Dr. Bunnell but all of the sudden, I felt like it was a total emergency. In a few short minutes, I had convinced myself that this was a tumor that my PCP had misdiagnosed...a tumor on my bone...a tumor that would kill me. 

It wasn't. Dr. Bunnell agreed it was torn cartilage. I was so relieved, and a bit embarrassed. I kicked myself for ever letting that cough go so long and so far before I stopped and took care of myself. And I thanked God that I had left Ropes & Gray before I'd ever have to say the same thing about my cancer. 

*  *  *

This is not a blog about how being a lawyer at a big law firm is miserable and unfulfilling. Yes, for me, life at a big law firm was sometimes miserable and and sometimes unfulfilling. But that was me, that was sometimes, and I always knew how lucky I was. I wasn't fighting in a war abroad. I wasn't battling a terminal illness (that I knew of). And I was very aware that millions of people across the planet would give anything for the opportunities I had; that others worked just as hard as I did but for so much less money; that I chose all of it. 

To be continued...