Wednesday, July 31, 2013

One Year Ago

Annabel, August 2012, at the "Pi-wit Ship Pway-gwound" 

Same beautiful girl, same place, August 2013
This Friday night, the first Friday in August, a group of Brian’s alumni hockey players will come over to our house for a cookout. I’ll be on my way home from work when they arrive but somehow, Brian will have everything prepared, and I’ll walk into trays of delicious BBQ, a pot of homemade clam chowder, and a whole bunch of boys that my son thinks are superheroes.

We didn’t plan it this way, but it turns out that last year’s alumni cookout was the first Friday of August, too. Last year, that was August 3rd, and it was the night I first felt my tumor. For the record, I'm not feeling for any lumps this Friday; I'm just going to eat a lot of my husband's great cooking, enjoy some good company, and go to sleep. 

*  *  *

I’ve already written about finding the lump, and I don’t mean to bore you with the details again. But I do need to rehash some things for myself about last August. It’s kind of like a game of dodge ball -- I know these memories and emotions from one year ago are going to be fired at my head; I can either try to catch them and stay safe in the game or avoid them and eventually be knocked out.

When I first felt my tumor, I was worried. My hypochondriacal history, however, helped to ease my mind a bit because nothing else I had ever built up to be cancer had actually been that. Sure, it'd be a neat story if I had a unique feeling that this lump was different but I didn’t have any such thing. I just had a feeling that I should get it checked out to be sure; just like I had had swollen glands and calcium buildups examined before.

If left alone, I would have made an appointment a few weeks or a month down the road. But Brian (secretly) worries more than I do, and he insisted that I schedule an appointment as soon as I could.

On Monday morning, I called my doctor's office. My PCP was on vacation for the week, but another physician in her group could see me that Friday at two. I put it in my calendar, which usually made me feel better. Oddly enough, however, this time, it didn't. 

On Monday night, I started to worry more. I didn’t feel the tumor more than a few times because I hated the thought of what could be going on inside my body. I just kept wondering, Why would there be a lump on one side and not on the other?

I called my doctor's office back again on Tuesday morning. I told the secretary that I was worried about the lump in my breast and that I’d really like to come in sooner than Friday. She said they had a cancellation and I could come in that afternoon, at 2pm.  It just happened that there was a train home that would get me to the appointment perfectly on time.

Brian must have arranged for someone to watch the kids because he was with me at that 2pm appointment but the kids weren't. I remember lying on the exam table topless as the covering physician massaged my pathetic excuse for a boob. Does this hurt when I press on it? she asked bearing down on the lump.

Kind of, I answered.

Good, I’m pretty sure it’s just a cyst, she explained, It wouldn’t hurt if it were a tumor. Either I’m a total wimp or her textbook needs a footnote.

As soon as the doctor said cyst, I was fine. No cancer. No worries. This was just something to add to the list of worries-turned-fine; just like when I went in for a persistent headache and my doctor told me it was due to excessive teeth-grinding; just like when the suspected pulmonary embolism was a broken rib. I was going to be fine and I celebrated that for a minute or two amidst the embarrassment I felt for my overreaction. Then I just got inpatient and wanted to go home.

The PCP decided that she would send me for a mammogram and an ultrasound to confirm her assessment. What a waste of time and money, I thought. The doctor punched something into the computer and handed me a little card to take down to the radiology department. Reluctantly, I did.  

The guy at the radiology scheduling desk was new. He managed to schedule my mammogram with ease (for the very next day), but the ultrasound gave him some trouble. I was getting really antsy and I told him to not bother with the ultrasound. If they see anything in the mammogram, I'll book an ultrasound, I told him trying to push my rudeness back down to its hiding place. I was sure that the mammogram would confirm that the lump was a pesky little cyst but the scheduling guy was loyal to the rules like any good rookie and he told me that he had to schedule the two appointments together. 

Five or ten minutes later, with the help of his most unhelpful colleague, the scheduler had my ultrasound set for just after the mammogram. I thanked him and said I'd be there, even though I planned on ditching the second appointment.

I didn’t think about that lump for another minute after Brian and I walked out of the building holding hands.

The next morning, Brian took the kids to a little zoo just north of the Rhode Island border. He had asked me if I wanted him to come with me to the follow up appointments but I insisted that he not waste his time.

Being only 32 with no family history of cancer and no other risk factors, my August 8th mammogram was my first one. I remember undressing and putting my clothes in a little locker by the small internal waiting area. I remember being cold. But not scared.

Until last year, I thought mammograms were like ultrasounds -- performed with a wand on a patient lying down. I had no idea that a mammogram (or at least, my mammogram) was done standing up, or that it would involve propping my pancake of a boob up on a cold metal plate and pressing another plate down on it from the top. It was kind of like my boob was squished in the middle of a cold panini maker. Did it hurt? No, although I'm not saying it tickled. But it was quick and life-saving and I would strongly discourage anyone from scaring a woman into avoiding a mammogram.

As the rad tech (who I will call "Jean") repositioned my pancake and the hidden rotten blueberry between the panini plates, I started to feel like something may be wrong. I asked her if she saw anything bad. She hesitated and her answer was vague.  

When we were done, Jean told me to wait in the waiting room. I heard her talking to the radiologist (Dr. Berman) in his windowless office nearby. I could tell that Dr. Berman was showing her something on the image. And I heard him say that he wanted more pictures. 

Back to the plates we went. They felt so much colder the second time. No doubt, now I was scared. 

My memory of time for the rest of that day gets a bit fuzzy. I don't think it could have been more than 10 minutes before Jean came back to the small waiting room to retrieve me and whisper that Dr. Berman wanted to do the ultrasound right away. 

Dr. Berman told me that he saw cancer within minutes of placing the gooey wand on my chest. At the time, his language was completely foreign to me but I know now exactly what he saw and what he said -- invasive ductal carcinoma, as well as ductal carcinoma in situ (DCIS). The invasive part was the tumor. The DCIS was a four-inch-in-diameter growth of cancer that was still inside the ducts. 

Believe it or not, I can recall precisely the first thought that I had after Dr. Berman told me that he saw cancer -- If this is only breast cancer, I will beat this. At the time, I didn't understand that breast cancer that has reached the chest or the bones or the brain is still breast cancer. So what I meant in my own head was, If this hasn't spread, I will survive. 

I don't usually put too much weight on that gut instinct, especially because within seconds, I felt cancer all over my body. And I don't mean it to suggest that people can't beat cancer that has spread. Even then, I knew that people could beat cancer even after it had traveled to several parts of the body (OK, maybe Lance Armstrong was my only example, but I needed only one instance to know that it was possible). Still, in a few of my dark moments, I have returned to that very first reactionary thought and I have chosen to believe it. 

The next step was the biopsy, but before that, Dr. Berman had to gather some materials (or sneak in another patient, who knows). Jean gave me her office to call Brian. 

For some foolish reason, I thought I could tell him about Dr. Berman's pseudo-diagnosis without crying. But the moment I sent the words, He thinks he sees cancer, from my brain to my mouth, the tears came too. I was in shock, trying hard to stay standing on a ground that felt like it had fallen out from underneath me. 

I sat back down in my johnny in the small waiting area. At one point, I started crying again, and a young woman asked me if I had ever had a mammogram before. I could barely respond. I have a family history so I've gotten lots of them. It's not that scary, she explained trying to comfort me. 

Yeah, it's the hearing you have cancer part that's scary, I laughed and cried. She apologized, stunned. That was the first time, but definitely not the last time that I saw that holy-shit-shocked look. Later, I worried that I had been too flippant to a kind woman who was just trying to help. 

The biopsy part was just messy; literally. Dr. Berman numbed the area and then used some sort of device that made loud clicks and spit out tiny globs of some liquid (blood?) or solid (chest flesh?). It didn't hurt at all, but it was terrifying because I knew then and there that I wasn't going to be catching my train to work that day; I knew that my whole life was about to change. 

Dr. Berman tried to comfort me. Will I see my kids grow up? I asked him in order to induce him to say, Of course you will!

But he said something much more doctor-ly. This is very treatable now, he explained. Little did he know mine would even be curable! A few months ago, I went back to tell him that but he had already retired. I saw Jean and she started to cry when I told her I was doing really well. Her niece had just been diagnosed and clearly, she was having a lot of trouble processing that. I told her that her niece would do great. 

When Dr. Berman was done with the biopsy, he told me some vague timeline of events (which I didn't remember) and handed me a card with a phone number for new breast cancer patients. 

I got dressed, walked to my car, and called Mark to tell him I wouldn't be coming into the office. I told him why, and I felt so badly that I had to give him news that would upset him. 

Then, I drove home without turning on any music. I never do that.   

Monday, July 29, 2013

One Nurse's Power

I've written before about how I have a terrible sense of direction and about how sometimes that missing part of my brain can cause me real embarrassment. Last Wednesday was one of those times.

After my labs were drawn (more below) and my Mom and I waited almost an hour for my next appointment up on Yawkey 9, a nurse took my vitals and put us into an exam room that we had never been in before. For all of my other appointments with Dr. Bunnell or Danielle I've been in an exam room with a small painting of a blue sky and an orange rooftop that makes me think of a retired persons' neighborhood in Florida. From that room, I know my way back to the waiting area -- right turn and straight out (I think).

We met with Danielle for a solid 45 minutes on Wednesday, discussing all sorts of different things, both mental and physical. When we were done, my Mom and I headed calmly and confidently to my infusion. I took a right, walked straight, and opened the big wooden door in front of me.

Only it wasn't the waiting room. I recognized the space immediately as the consult room where I usually meet my therapy lady. My first thought was, How did they move the consult room to the waiting area? I really scare myself with my own stupidity sometimes.

The worst part was that the consult room wasn't empty. Dr. Fasciano was sitting there (where I usually sit) with a patient (where she usually sits). (Which totally makes me wonder if I've been sitting in the wrong place all along. My goodness, so much embarrassment!) Anyways, they both looked at me with shock and confusion that could only be rivaled by my own parallel expression.

Oops!  I thought this was the waiting room! I exclaimed, looking to the back of the door as if there was a sign to justify my mistake. There was a sign, next to the door, but apparently the "Consult Room" plaque wasn't enough to make me question my sense of direction.

Dr. Fasciano and her patient were both too stunned by the fool (me) to laugh. OK, well, Hi Karen! I said laughing. I'm going now. She smiled and said Bye. 

When she was done with her appointment, my Mom and I were still waiting to be called into the infusion suite. Dr. Fasciano came right over to us and we had a good laugh at the expense of my ridiculousness.

*  *  *

Last Wednesday was a long day at Dana-Farber despite that I didn't even have an appointment with Karen. I knew I was already going to be there for five hours so I decided to delay our meeting until next time. 

The day began a few hours later than usual -- at 9:30am -- at the lab on the second floor. Every few months now, my oncology team has the nurses in the lab draw blood to be sure that it contains whatever it's supposed to contain. It's a really easy part of my treatment so I didn't have any apprehension about it. 

When the cheerful, middle-aged nurse (who I will call "Elaine") called out Tara S, I told my Mom I'd be right back. When I emerged from the back 10 minutes later, I was a mess. What in the world happened back there in such a short time? you may ask. My Mom asked the same thing.  

Elaine was very kind. She was talkative and good natured and meant well. But Elaine had one fatal flaw -- she didn't understand her own power.

When I sat down and she looked at my chart, she asked me, So how many do you have left? 

I'm done at the end of October, I explained, and even though that sounds far away, given the three week increments, it means only about six more treatments. 

Wow! That's so exciting! Congratulations! You must be so happy! 

Yes, I am. But it's scary, too. It hard to think about being without the Herceptin. 

Oh, why's that? 

I don't know. I guess just because I really don't want the cancer to come back and it seems that the Herceptin is the key to making sure it doesn't.  

I know, that is scary. It's scary to think about what you've had to put into your body. I mean, it's all poison and the chemo can do real harm down the road. I've seen many cases of that. But what's the alternative? 

I froze. She chattered on while she inserted my IV and drew six or seven vials of my blood. As she stuck the little printed labels of my information onto each vial, I watched her. I didn't hear her, although she was still talking. I was a ghost again; my body in the chair and my arm extended but my mind somewhere else. Somewhere far away. Terrified and defeated. 

I held it together (barely) because I had an errand to run. But while we were in the Friends' Place donating the wig I never wore, I broke down and told my Mom what Elaine had said. My Mom felt so bad but I was too upset to feel bad that she felt bad.

When we left the little shop and got to the foyer on the first floor, my Mom hugged me and apologized for what Elaine had said. I explained to her how scared I am that the Herceptin will end up being toxic to my heart or that there could be some other terrible side effect that they discover years down the road that will land me back in treatment. Herceptin is so new, I argued from my dark place that I go to only very rarely. They don't know what it could really do to people! 

My Mom didn't argue, but she did explain that she thinks they do understand the biology of Herceptin. Then she said something even more helpful. Hon, I could walk outside right now and get hit by a car. None of us know what's going to happen tomorrow. 

I know, this really isn't something that I'd expect to bring me comfort, either. But it did; a real sincere comfort. I've wondered why that was, especially since if I really thought about it, my Mom being hit by a car would send me into a mental tailspin. But I didn't really think about it. I just felt better. Later, I decided that was because my Mom had reminded me that I'm not alone in my vulnerability. And I think that the feeling of being alone is the scariest feeling of all.

*  *  *

I know that people like clean and happy endings; I love romantic comedies starring Hugh Grant, too. So I know that Elaine and everyone else, including me, wants the end of my infusions to feel like pure victory. Sometimes, I'm sure it will. But I just don't think the story -- any story -- is all that simple.

A few weeks ago, Andy forwarded me a New York Times article about how anxiety lingers long after cancer treatment has ended. Not that I want anyone else to feel the lingering anxiety that I feel, but I have to admit that it's comforting to know that they do.

I wonder if Elaine has read this article. I wonder if she knows the power that she holds as she sits there tapping patients' arms to find their best vein. I'm not saying her job is easy because it's not. Anyone who works with vulnerable populations -- patients, kids, the mentally or physically disabled, the elderly, the poor -- they hold more power in their hands than the CEO of Wal-Mart, at least in my humble opinion.

Because those people have the power to give someone hope or give them doubt. And when you're feeling weak and vulnerable and scared, I don't know what is more valuable than hope or what is more scary than doubt.

I know very well that what Elaine said was true. I know Robin Roberts' story and that my chemo could cause me more cancer down the line. I have met several woman now who were treated for lymphoma years ago and as a result of their treatment have battled breast cancer or been forced to take drastic steps to avoid it. I know what Herceptin could do to my heart, even years from now. And I know that there was no alternative to putting my Allies into my body to fight the cancer. But I also know that sometimes, hope is more important than truth. And it would have been a lot easier if Elaine told me that she knows I will be OK even though she doesn't. Or she could have just made small talk about the Red Sox. That'd have been easier too.

Maybe Elaine just slipped up, like I did when I busted in on Dr. Fasciano and her patient. Or maybe she joins a lot of us who sometimes just need a gentle reminder of how powerful our words can really be. 

Friday, July 26, 2013

Life's Depths

When I got really sick after my second chemo treatment, I found myself at Brigham & Women’s Hospital where I learned that my absolute neutrophil count (the number of useful white blood cells) was zero. My first reaction to that news was, Excellent! If the chemo killed all those good cells, it must mean that it killed all the bad ones, too.

Later, when my fever spiked again, I felt totally frustrated by my own stupidity. I wished that I had respected the power of germs as I had heard chemo patients were supposed to do. But instead, I had hugged lots of people at the Thanksgiving Day football game and I had eaten snacks out of the same bowl that the kids were digging their unwashed little fingers into.

When I explained to a very kind doctor that I was regretting not taking many (any?) steps to avoid germs, he explained to me that I should ditch the frustration. You have bacteria in your body naturally so even if you had been in a bubble, with an ANC of zero, you’d have gotten sick. And so I waited for my body to fight its way out of the hospital. It only took five days, which felt long until I remembered Ashley.

When I arrived at the Brigham that late November night, Ashley had already been there for several months. She had received new lungs and while the lungs had been miraculous, one thing lead to another and an infection in her body caused Ashley to suffer multiple strokes. Doctors operated on her head to control the swelling and when I met her, Ashley was learning how to talk and stand up again. She and her mother, Joy, told me all of that the very first day I met them from behind my mask in the hospital gift shop.

When I left the Brigham just before December, Ashley remained. Since then she had a few stints at rehab and one at her home in Maine, but otherwise, Ashley and her family spent most of 2013 in the ICU at the Brigham. A tiny and beautiful young woman, Ashley defied all odds, battling through surgeries from which her doctors warned she may never wake up and fighting through countless obstacles like no one thought possible. She loved God, her brother, her big family, music, greasy food, her doctors, and so many other things that I don't even know about since I barely even knew her. I missed out, but those who feel the most grief right now feel that pain because they didn't. 

Yesterday morning, Ashley passed away peacefully with her loving family by her side. My Mom, who told me months ago that Ashley’s journey was too hard for her to follow, called me at work to see how I was handling the awful news. I hadn't checked Joy's Facebook status yet that hour so I hadn't seen the post from 40 minutes prior. It was the post that I dreaded every time I waited for Joy's page to load on my computer.  

I left my office last night having successfully hidden my broken heart. It was rainy, cold, and dark, which felt so fitting. Because of the weather, I decided to take the Orange Line to Back Bay instead of walking to catch the train at South Station like I always do. 

When I took my seat on the subway, I wanted to burst into tears. I had bottled up so much emotion in that last hour and I hoped that I could contain it for my one-hour-door-to-door trip home. Turns out that I couldn’t. I cried onto my raincoat as the train shook past Downtown Crossing and Chinatown.

Then I noticed the man sitting across from me. He was probably 50 or 55, about double Ashley’s age. Thanks to a significant amount of alcohol and/or drugs, the man literally could not sit up straight or open his eyes. His friend or son or fellow addict was in slightly better shape than he was and he kept pulling on the man's dirty t-shirt to keep him from falling onto the shoulder of the poor girl sitting next to them.

I see drunk people and drug addicts on the Orange Line all the time and besides being cautious of their volatility and often, their stench, I don't dwell on them. But yesterday was different. As I sat there crying over the death of a young daughter, sister, cousin, niece, granddaughter, friend, and distant inspiration, I couldn’t help that my sadness turned to anger.

In my glasses, my LL Bean raincoat, my flip flops, and my professional-ish black work dress, I wanted to jump across the train and pummel that tilting man. I wanted to tell him that someone half his age had been fighting for her life for years; that she just died; that she deserved to reach whatever birthday he last celebrated so much more than he ever did. That God should have taken him. But I sat there quiet and still.

A stop or two later, I realized how ridiculous I was being. Life’s just not that simple. 

Then I got to wondering about what had happened to that guy that made him do what he was doing to himself. Maybe he was abused as a kid. Maybe he had been stable and then the death of his wife or young child caused him to start drinking. Maybe he had served our country and we had all failed him. I wasn’t forgiving any crimes he had committed or harm he had done to himself or others. I was just reminding myself that oftentimes, there's a lot of grey area when it comes to placing people in a good or bad category.

Sometimes, however, a person's goodness is crystal clear. Even from a distance, I can say with the utmost confidence that Ashley and her family are as good as they get. There's nothing grey about that.

*  *  *

This blog is not an attempt to make sense of a tragedy nor is it an attempt to pay my respects to Ashley. Right now, there's no way I could do either. All I can do is write about one tiny moment of clarity, one sliver of understanding, that I found as I stepped off the train last night.

The moment came from the combination of several thoughts that had been swirling like a tornado in my head -- Ashley's life, her death, her mom; my Mom; my daughter; August 8th, a road race, a pain in my stomach; the addict. A quote. 

You can't do anything about the length of your life, but you can do something about its width and depth. 
~ H.L. Mencken, writer, editor, and critic (1880-1956)

It's true; none of us know how long our life will be. Maybe, then, I should stop equating old age with proof of a life's depth. Because as horrifically tragic and unjust as their deaths have been, the people who I have seen pass far too early -- amazing young men and women like Scott and Brendan and Mary and Ashley -- they all lived lives that stretched so wide and reached so deep that most 100 year olds haven't been blessed to live a fraction of the life that they did. 

Wednesday, July 24, 2013

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.

Tuesday, July 23, 2013

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?

Sunday, July 21, 2013

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? 

Thursday, July 18, 2013

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?!?

Monday, July 15, 2013

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...

Thursday, July 11, 2013

Faith

In my last blog post of 2012, I wrote about what my sister and I call "Sunday night feeling." You know, it's that terrible feeling that everything fun in life is over and never to be had again.

When I was little, every now and then, my Sunday night feeling escalated to a whole new level. Now I realize it was probably a classic case of pretty serious anxiety, but at the time, I thought it was just me. I remember the feeling of helpless fear; of being so overwhelmed that I didn't know how I'd ever make it to the next minute.

Usually it was thoughts about death that worked me up into this terrible tizzy. I was petrified that my parents were going to die and the thought of losing them suffocated me like a dark, heavy tarp being thrown over my head. I could lie still in my bed, but in my head I was thrashing around under the tarp, trying to figure out why and how and what I should do next; what I could do next. I remember thinking, What if this awful feeling never goes away? But miraculously, it always did, and the next morning, I thought that the worried girl from the night before was a bit of a lunatic.

I remember one of these terrible nights as if it were yesterday. I remember being so embarrassed to tell my parents what I was feeling, so while my Dad watched TV and my Mom read, I asked them a bunch of questions instead. I had probably done the same thing the week before and the week before that. I remember framing my questions in terms of natural disasters, another thing I feared far more than was healthy. Could we ever had a tornado here? A tidal wave? How do you know that it wouldn't wipe away our whole house? Or you? 

As a parent myself, now I see the situation so differently than I had before. Now I realize that my parents were probably just trying to decompress after a weekend full of entertaining three young kids. I'm sure they didn't want any deep questions from an anxiety-ridden third-grader. They just wanted to rest.

But my parents are amazing so they reassured me. Tornados and tidal waves don't come to Canton, Massachusetts. We will be fine. We're not going anywhere. 

I went away, wishing I was satisfied. But I wasn't, and I remember coming back sometime later. I will never forget what my mother told me.

She said something like, Even if we did die, you would be fine. Human beings are amazingly resilient and they bounce back. You would be OK. 

As a parent with a child who asks 30 questions before bed, and 50 questions on nights that we're especially exhausted, I realize that my poor mother was probably just sick of the questions and sick of her more conventional answers not getting me anywhere.

But at the time, her answer absolutely shocked me. How could she even reference death with such nonchalance? Especially the death of the two people that were the center of my entire universe? And how could she ever think that I would be OK if something happened to them? I knew I wouldn't ever be OK, and that was that. 

* * * 

When one is forced to enter the "kingdom of the sick," he or she meets new people there. I've met new and wonderful people there, or at the very least, I've heard their stories. 

For instance, I heard Bridget's story and I've followed Ashley's as if she was my own cousin. Mary, who I knew before my own cancer, became a friend on a whole new level after it, and I still can't believe that I got to be with her at Dana-Farber for her last treatment. As I think about these three tiny women with enormous spirits, I quickly realize something they all have in common. They were (or are) deeply religious. 

Talking about religion for me is about as comfortable as putting on a pair of Spanx after a Chinese food buffet. Things don't exactly slide into place. But that doesn't mean that I don't think about it (religion, not Chinese food buffets) often, because I do. Especially now that I have learned about how much it appears to have helped, and continue to help, women that I look up to as so truly remarkable.  

But let me be clear -- this post is not about religion. There's no way I'm ready to take on such a weighty topic. This post is, however, about faith. Since I learned that an aggressive form of cancer was silently invading my body, I have not come to be more religious. But I absolutely have become a person of real faith. 

My cancer journey has taught me that everyone has, or will have, times when they feel so desperate and scared and helpless that they don't believe they can carry the weight of their own mind or body from one second to the next. When that happens, the only thing to do is surrender. Some people surrender to their God and they ask their God to carry them. From what I've seen, He has. 

As I said goodbye to Mary for the last time, I couldn't stop crying. I am so embarrassed to admit it, but at that moment, Mary, unable to even sit up, comforted me. She told me that she trusted God. I could literally feel the peace that her God had brought her. Part of me was so relieved. Another small part was jealous. Still, I cried like a fool.  

Lately, as I've battled through some dark times in my own head (I still think every little pain is cancer), I've reminded myself of my own faith. It's not conventional, but it's very real. 

I have faith in people. I have faith that they have studied hard to learn about cell biology and that their advances with proteins and antibodies will save my life. I have faith in the teachers who taught them and the books that they read. I have faith that progress is being made every day. 

I have faith that the good ultimately outweighs the bad, even though sometimes we may feel like the scales are tipped in the wrong direction. I have faith in the generosity of our loved ones and of complete strangers and of the many people somewhere in between.  

I have faith in my doctors, and in the colleagues with whom they discussed my case. I have faith in the laws that they follow. I have faith in the beams that hold up the Yawkey building because I've seen the names spray painted on them and I've seen the love that went into those letters. 

I have faith in my family. I have faith in their resiliency, because I've seen their strength; I've seen them fall, and pull themselves back up again. And I've seen such unbelievable resiliency in other families -- in Bridget's family, and in Todd's -- that I believe even more deeply in what my own family is capable of. 

I have faith in the music and the literature that carried me through some of my darkest moments. I have faith in friendship -- old and new and undiscovered. 

I have faith in love. And I don't believe that it comes along only once (no matter how much Brian hates when I suggest that he would (and should) find someone else if Heaven forbid...). 

I have faith in myself -- in my own resiliency; in my body that, for so long, I felt had betrayed me. I have faith in my own mind that has trudged back from the corners of caves to find light again. 

And I have faith in miracles. I believe that things happen that we can't explain -- magic -- that may be influenced by something or someone so big (or so small?), so complex (or so simple?) that we could never begin to comprehend it. 

I have my doubts, and those times are hard. But I always seem to find a way to bring myself back to my faith in these people and these things -- in the world's absolute beauty, and in my belief that what my Mom told me years ago really is true; that even if my worst nightmare were to come true, everything, everyone that I love really would be OK. Because in spite of it all, human beings really are amazingly resilient. I have the deepest faith in that.

Monday, July 8, 2013

Anniversaries

During the toughest part of my treatment last winter, I booked a three-night stay at the Spruce Point Inn for July 4th weekend of 2013. At the time, the medical bills were rolling in by the dozens, but I went for it anyways thanks to the gift certificates to the Inn that we had accumulated from several of our friends, family, and colleagues. Plus, Spruce Point had sent us a free two-night stay after they learned about my cancer, so we had every reason to splurge without really splurging. 

Despite the Ativan, steroids, Benadryl, and chemo, I vividly remember unwrapping those gift certificates several months ago. I remember crying; partly because I hoped to a higher being that I would be well enough to go back to that place Brian and I had been married, but mostly because I could not believe that people we knew could be so thoughtful and so generous to send us back to one of our favorite places on Earth.

Those good people probably never knew it, but the gift certificates were more than just converted money. Many times, they were the distraction I needed to get from one moment to the next. I remember being keeled over the kitchen sink during one of my gushing chemo nosebleeds, trying to fend off a panic attack with thoughts of sitting by the salt water pool with my husband that upcoming July. When I began this blog post the day before yesterday, I sat by that very pool.

 

Not counting hospital stays or a handful of overnight trips to a wedding, Brian and I have not been away together since before Teddy was born. We talked about this Spruce Point getaway every day for the past few months—about how incredible it would be to play tennis or run together, eat gluttonous desserts (sugar included), and sleep through the night. I started packing a few weeks ago.

Then, the week before our trip, we both got really nervous. We felt guilty for leaving the kids and we worried that we would miss them too much to enjoy it. Brian, the frugal and sensible one, even took Teddy and Annabel to the toy store a few days before we left and let them each pick any toy they wanted. It was their “Nana-Papa-vacation toy,” and Brian’s attempt to spend away his own guilt. I eased my own mind by deciding that if we missed them too much, we would just drive back and get them.

It turns out that we aren’t the loyal guilt-ridden parents we thought we were. Not a minute after Nana and Papa drove away for the weekend with the kids tucked happily into the back seat, we both exclaimed, Freeeee-dom, and we were off.

Brian on our first day away: "We should have done this five years ago!"
For the next three days, we were guilt-free and giddy with joy and appreciation as we lounged around paradise. We kept singing Frank Sinatra’s "Heaven," or better yet, just the first line -- "Heaven, I'm in Heaven..." When I heard a kid crying or complaining, I turned to Brian, smiled, and asserted, "Not my problem." Seriously, the only problem we had at Spruce Point for those three sunny days was not being able to decide what to order off the menu of the world’s most delicious food. And sometimes I needed to reposition my lounge chair so that I remained in the shade. 

There's something about sitting by a pool that overlooks the ocean, and jumping into cool water after a hot run, and lingering after dinner not worried about how the kids behaved for a babysitter; something so peaceful, that it has the power to, well, cure cancer. Because in the last 11 months, I have never had three days where I thought so little about that stupid disease. 

*  *  *

We didn’t make any plans for our three days in Maine, except for one. I wanted to visit the church where we got married, so I called the church office a few weeks ago to see if there would be a good time for us to swing by. When I learned that the reverend who had married us still lead the church, I asked if it would be possible for us to say hello to her. It was, so we made it a date and Friday afternoon, Brian and I interrupted our poolside reading with a trip to see the lovely woman who had married us back on July 8, 2006. 

In catching up about the last seven years, the topic of my cancer surfaced. Then, the topic of the reverend’s son’s cancer surfaced, too. It turned out Brian and I weren’t the only ones who had been shocked by a cancer diagnosis since the summer of 2006.

Six years after finishing a grueling treatment regimen, the reverend’s thirty-year-old son is doing great. Still, she cried twice when she spoke about him—first, when she spoke about the incredible support and the treatment her son received and second, when she spoke about his five year anniversary.

I thought about my Mom when the reverend teared up the first time—about how the reverend and my mother were strangers to each other, yet they had something so huge in common—the experience of having watched their kids, who weren’t really kids at all, battle cancer. And I knew they were very similar because they both tear up not at the thought of cancer's cruel ways, but at all the good that people displayed in the face of it.

When the reverend spoke about five years, I gulped back my own tears. I knew what that anniversary meant to this mother, her son, and hundreds of other people who had held them up along the way. And I felt a tinge of what that anniversary would (will) feel like for me. 

On the way out, Brian and I took some pictures in the same spots we had been photographed seven years ago. And yes, the diminished amounts of hair have been noted.  




  



Having celebrated our freedom, I mean, our anniversary for three straight days, we both totally forgot that today was our "real" anniversary. Both exhausted from too much relaxing, we put away groceries, packed Teddy's Kids' Camp bag, and obeyed Annabel's growing list of morning orders. I have a doctor's appointment later, and thanks to me volunteering him, Brian has spent the day fulfilling our family's four hours of contribution to Teddy's camp (Happy Anniversary?!?). That means that Brian has been making kangaroos out of milk cartons while sweating through his clothes. He just texted me a photo of his newest kangaroo, along with a Happy Anniversary caption. Yes, the no-kid kind of vacation romance sure is fun. Like really fun. But the regular ole crazy kids kind of romance is pretty awesome, too. 



Friday, July 5, 2013

What I Hope for You

Don’t worry about the size of your ring.

Keep your wedding in a healthy perspective. 

If possible, live with the person before you marry him or her.

These are just a few of the several ideas I came up with a few nights ago as I sat snuggled between two strangers in a middle seat of the commuter train. 

I was bursting to write a lighter post, not only because so much of what I've written lately has been heavy, but also because Brian and my fast-approaching wedding anniversary had me thinking a lot about love and marriage (they go together like a horse and carriage...love and marriage...).  

So I thought I'd write down a few pieces of advice for my kids—small thoughts for them to consider as they grow up andexperience love and heartbreak and all of the complexities in between.

I made a list, but it wasn't making me feel alive like my writing usually does, and by the time my train pulled into Canton Junction, I blatantly didn't like the way it sounded. Sure, if my kids followed my list of advice, they may be spared some future pain or, if they were lucky, years from now they may more quickly find a happier reality. But being human, especially when it comes to love, seems more about feeling a whole bunch of different emotions, figuring out what to do with them, and becoming more of who you want to be along the way. In other words, what good would it be to tell my daughternot to care about the size of her ring? Those words were empty, and could onlybe filled by my teaching her why carats don’t really matter; how she would be so much more fulfilled if she focused on something else. (Please note: There is one exception to this don't-care-about-the-ring rule and she knows who she is. Her ring does matter to her, but in the most sincere, sweet, and healthy of ways. And, she has an awesome ring.)

In the end, that list of love advice just wasn't me. Still, I want to write about what Ihope for my kids when it comes to love and, if they so choose, marriage. So here goes.

*  *  *

 For My Kids...

What I Hope for You

Your Dad and I had planned that he would join me for myHerceptin treatment this past Wednesday morning. We arranged your fabulous babysitter to come early and when we tucked you in bed the night before, we told you that we would see you a few hours after you woke up. Yep, your parents had a date at Dana-Farber so I gave your Grandmom the day off—her first one in almost a year of appointments and infusions.

Then, Tuesday night after Teddy's bedtime questions about the Red Sox and I-love-you-so-much-s finally ceased, your Dad and I got into a huge fight. For afew minutes, we yelled and swore and scoffed at each other’s snide comments. Itwas not exactly how either of us were hoping to start our weddinganniversary weekend.

As you know, your Dad and I don’t fight often, but we’re human, and marriedfor seven years, so every now and then, we have a bad night. We make a conscious effort not to fight in front of you, so you may be wondering why I would decide to air this dirty laundry to the world, especially in a post about love and marriage. Ironically, it's because I want you to know what I reallythink about those topics.

I was so mad at your father a few nights ago that I wished he wouldhave slept on the sofa. But he went to bed before I did so I had to suck it up andsleep next to him. I struggled to fall asleep (like you, Teddy) and as I noticed how soundly he was sleeping (like you, Annabel), I got even more mad at him. 

The next morning, after several of Annabel's I-can-climb-out-of-my-crib-now nighttime visits, I rolled over and told your Dad that I wanted to go to my infusion alone. At that moment, I really did want that. More importantly, however, I wanted to show myself, and him, that I could do that. All alone, I could walk into that building that once scared me so much and I could sit in that chemo infusion suite surrounded by empty chairs and I could be strong and content. Alone and alive. Plus, I have a blog, so without bending my right arm (which causes the IV machine to beep in extreme discontent), I could use my laptop to dump on your father for the whole world to see (kidding on that last part). 

Which brings me to the first thing that I hope for you when it comes to love—that in theend, if you find yourself alone, either by your making or someone else's, you will figure out a way to be strong and content. Alone and alive. I know, it doesn't sound all that romantic, but really it is. Because I hope that above all, you love yourself. Not in a snobby or egotistical way, or in a way that brings you stubborn loneliness, but in a way full of healthy confidence, forgiveness, and above all, respect. 

Which brings me back to last Wednesday morning when Teddy was still snuggled among his 55 stuffed animals and Annabel was still patting her blankie. I left the house that morning alone, calm and collected,with my bag and my earphones and the confidence to get my infusion alone.I knew my Mom would pinch hit if I had called her but I didn’t want that. Atthat moment, I wanted to do it  all by myself. Ironically, despitethat she’s always there for me, in the end, I know my Mom wanted to raise her kids to be able to do just that. 

Despite that he was equally as angry at me, as I filled my car's empty gas tank just down the street from our house, your Dad called me and asked (begged) me to come back. I had absolutely no intention of turning around, but forsome reason, I did.

Me and your Dad didn’t say a word to each other the whole ride into Boston. In fact, aside from me giving him my omlet order, we didn't talk during my infusion either. Your Dad just read his little magazine and I thought about my love and marriage blog as my life-saving Herceptin dripped intomy veins.

Your Dad and I made up, as we always do when finally he admits he was wrong (kidding). But we spent a solid day pretending that we liked each other in front of you two. 

Which brings me to my other hope for both of you when it comes to love and marriage. I hope that while you could be happy alone, that ultimately, you find someone to walk, skip, and sometimes, trudge through life with. I hope that you find someone who, even when you don't like her, you know that you love her very deeply. I hope you find someone like your Dad, who wouldn't ever let me be alone for something even slightly painful or scary. Because you know you found the right person when you're so mad at him that you don't even look at him when he tries to talk to you, but inside, you're so very grateful that he's still sitting next to you.

*  *  *

One final thing. When I gave the Preview version of this blog post to Brian to read before I published it, I asked him if he was OK with what I wrote. He was absolutely OK with it, and insisted that I write whatever I feel I need to write (though he also insisted that he hadn't fallen asleep before me on Tuesday night). Which reminds me; I forgot to say one thing about love—try to find someone who will support you when you do the crazy things in life that, for some reason you can't even explain, you really feel you need to do. 

Thursday, July 4, 2013

Good Words: Americans

I believe that there lives a burning desire in the most sequestered private heart of every American, a desire to belong to a great country. I believe that every citizen wants to stand on the world stage and represent a noble country where the mighty do not always crush the weak and the dream of a democracy is not the sole possession of the strong. 
~ Maya Angelou, from Letter to My Daughter

Monday, July 1, 2013

As Big as the Sky

Teddy absolutely hates when he thinks that something is gone forever. This tendency makes golfing really hard, because any lost ball is a mini-tragedy. Uncle Sean, his frequent golf partner, has been working on this with him, trying to teach him that it’s OK to lose a golf ball. Sean said he’s made some progress, but I can tell Teddy’s got a long way to go. Part of me thinks that we should buy some of those biodegradable golf balls and drive a bunch of them into the ocean; that maybe he could be purged of his anxiety. Then again, maybe we would have planted the seed of a terrible nightmare. Yeah, forget that idea.

On Saturday, after Mary’s funeral, Sean had just come off a 3-hour video game binge with Teddy when we got to talking about the Aaron Hernandez jersey swap. I told Sean that we were going to take the Patriots Pro Shop up on their offer to exchange Teddy’s jersey. The #81 replica was one of Teddy’s big gifts last Christmas; an effort to ease his pain over the injury to his favorite player (Rob Gronkowski).

When Teddy overheard Sean and I talking about the jersey swap, he lost it. I don’t want you to take my Aaron Hernandez jersey, he wailed in hysterical tears. To calm him down, I told him I wouldn’t, that we would talk about it. I knew that was just a temporary fix, however, and that in the end, if he pushed, I'd have to explain to him that he'd never be able to wear that jersey ever again.

* * *

I didn't think a lot about Mary's funeral until I was on my way there Saturday morning. I would have prepared myself on the run I had planned a few hours before, but once I had my sneakers on, Annabel begged me not to go. Obviously, I didn't. Instead, around 7am, I took her for a short walk around the neighborhood in her umbrella stroller (I've given up on the jogger with its persistant flat tires and vicious pull to the right). Annabel alerted me to every "bow-d" or "skwa-wel" she saw and I tried to keep up my level of enthusiasm. We strolled down the main road for just a few minutes of our loop, and when Annabel asked me why there were no "caws," I explained to her that she should sleep later.

Mary was a devout Catholic. In fact, part of why she moved to the United States was because Catholicism was not well tolerated by the communist government in Vietnam. I'm not Catholic, although lots of my family and friends are. Through them, I’ve been to several Catholic weddings, funerals, and way back in high school, even a Christmas Eve mass.

I have to admit that Catholic churches intimidate me a bit. When I’m there, I feel some fluctuating combination of foreign, curious, uneducated, and rude, especially when people recite prayers that I don't know, when I botch a peace-be-with-you handshake, or when almost everyone but me touches their face with their thumb in response to a cue I have never figured out. But when it's time to listen to what the priest is preaching, I listen. It’s as if I’m a hungry, though very picky eater—every sentence that is tossed out to me is food for me to dissect and inspect; to digest if I decide it's something that I want to be a part of me.

Nina, her brother (who I will call “Ty”), and their father, were all at the back of the church when I entered Saturday morning. I was able to hug them and give them my sympathies before I took my seat. Ty’s hug was strong, kind of what I’d expect from a teenage boy who just lost his mother and was trying so hard to be a man about it. Nina’s embrace, on the other hand, was so desperately weak, as if she needed someone to hold her up. She probably did.

The service was almost an hour and a half long, which made it the longest mass I have ever attended. Except for a two-minute Thank You from Mary’s uncle, it was entirely in Vietnamese.

I’ve heard before that when a person loses a sense, his or her other senses sharpen, as if to try to compensate. At Mary's funeral, I came to believe that that may actually be true.

For the first few minutes of the tribute to Mary, I wished for one of those little ear pieces that they use at the U.N., or even some kind person to whisper the main ideas in my ear. I’d have paid money for subtitles, but I realized quickly that I wasn't going to understand a word of Mary's funeral.

I’d be giving myself way too much credit if I claimed that I consciously decided to “make the best of it” because I wasn’t really in the mood for that. Rather, I so desperately wanted to hear how the priest tried to explain this tragedy to a church full of grieving people. I wanted to understand how he could make sense of the fact that Mary’s beautiful photo sat atop a small wooden box, her body so wounded by cancer that an open casket was not even an option. I wanted some food to fill my starving stomach and some comfort to ease my aching heart. I know, it sounds so selfish of me. I could pretend that I watched Mary’s family the whole time to see how they were doing from their inner circle. But I didn’t. Instead, I mostly stared at Mary’s gorgeous smile in a big gold frame.

Still, I listened, just not to words. As the choir sang, I thought to myself that I have never heard music more beautiful. It wasn't solemn, even though it had every right to be. It was bold and humble; reverent and strong; sympathetic and hopeful. It was, well, just like Mary.

I watched the priest pace at the front of the stage, trying to comfort people that he seemed to know. His tone fluctuated from one posing delicate questions to one posing possible answers. After I gave up wondering what those answers may have been, I merely felt comfort in watching this man who seemed, so sincerely, to want to help.

And I saw cameras—two video cameras and one digital zoom. The Vietnamese cameramen recorded everything as I have only seen done by wedding photographers. I was so fascinated by this; by a culture that would, in a way, embrace a funeral as a life experience. I wondered who would ever go back and watch that video, and why they would do so. I had so much respect for a family that would choose to memorialize a significant event despite how tragic it felt to them. The act of doing so felt so very honest.

In the end, Mary's funeral was one of the most spiritual experiences of my life. I can't even rightfully explain it, but there was something surreal and awesomely powerful about those few hours of Vietnamese prayer and song in the midst of an otherwise totally regular and fun-filled weekend.

On the way home, I clicked past a radio station that was talking about the Aaron Hernandez jersey swap; about how the ex-football star was essentially being erased. All of the sudden, what had felt so tragically unfair to me a few days before felt so very different—not necessarily right, but somewhat more just.  

I realized that I will erase my son's memory of Aaron Hernandez by getting rid of an over-priced shirt. But my kids will always know about Mary. One day, I'm sure they'll understand that most of the world's greatest heros never got a jersey with their name on the back. They just had kids. And they loved those kids more than anything, or, as I now tell Teddy and Annabel, they loved them as big as the sky....all the way up to Heaven.