New Post — Spoiler Alert

In the last month, we sold our house that we had lived in for the past almost 10 years and moved into a house that we (and by we I mean trained professionals, of course) had been building for the past 6 months. The new house is wonderful. It is in a great location, the layout and colors are amazing (because we have exquisite taste, of course), it has great sunlight and feels cozy but at the same time spacious, and has a nice big yard for the kids. But as much as I love the new house, and am so happy that we found it when we did and were able to be so involved in the building (and by building I mean selecting colors and fixtures, etc.), it is definitely a time of transition. And transition can be hard, even when the transition is to something you hoped for and worked for, and even counted the days toward.

Maybe I thought that moving would help me put last year behind me. Maybe I thought that somehow I could leave the somewhat constant fear of recurrence behind. Maybe I thought that I would be so completely ensconced in shopping for furniture, rugs, towels, bedding, and shoes (yes, shoes, my closet is bigger in the new house, of course) for the new house that I wouldn’t even remember that cancer was ever a part of my life. But, and I’m sure this will come as a surprise to no one, moving hasn’t done anything to help put cancer behind me. If anything, it’s brought my anxiety back to the forefront.

I haven’t been able to go to the gym in a month, because I’ve had to spend so much time at both the old house and the new house accommodating electricians, plumbers, painters, realtors. While I don’t love going to the gym, I do think that working out helps me to keep my anxiety in check. I also haven’t been able to see the therapist I started seeing after my diagnosis in over a month, for the same reasons. So these days I’m feeling round, and doughy, and more than a little bit nutty (mmm, anyone else now thinking about a really nice loaf of bread?) and a little bit unmoored. The funny thing (and by funny I mean not funny at all) is that I thought, in my misguided little mind, that having a double mastectomy would alleviate some of this anxiety. I distinctly remember saying that one of the reasons that I wasn’t having a lumpectomy was because I didn’t want to spend the rest of my life looking over my shoulder, waiting for cancer to catch me again. And yet, here I am, doing just that, at least for now. There are certainly days that are better than others. Days when I can just be happy in the moment and enjoy whatever it is that I’m doing, without wondering whether, while I’m enjoying myself, cancer cells are setting up shop somewhere in my body.

I do think that moving into this great house and being so happy about it, has maybe made me more anxious, because everyone knows (well some of us nuttier ones do) that it’s only when you allow yourself to relax, get comfortable, and enjoy life that the rug gets pulled out from under you. It’s only when you think that cancer might be behind you that it comes back and yells, “Surprise!” Even as I type that I know how crazy it sounds. It’s like thinking that something I do could affect the outcome of a Red Sox/Bruins/Patriots/Celtics game.

Of course plenty of unhappy people get sick. Plenty of people who have never felt comfortable a day in their lives get sick. The truth is, whether cancer comes back or not is completely out of my control. I could eat all the right foods and avoid all the wrong. I could exercise every day and make my body strong. I could do all the things that the doctors tell me to do, and all the things Dr. Bing and all her internet friends suggest. I could (and do) have the odds stacked squarely in my favor that a recurrence won’t occur. But that mother effin’ (sorry mom) cancer could still come back. I’ve been on the wrong side of the statistics once, who’s to say that I won’t be again?

In the past year, I have started jumping to the end of books to see how they end, or finding spoilers online for movies that I’m going to watch, because I just can’t take the not knowing. But that’s the thing with life. We don’t get spoiler alerts. People on twitter can’t live tweet my story before I live it.

Like many Saturday Night Live skits before me, I just can’t figure out how to end this post, which is perhaps as it should be. Sometimes the ending just isn’t clear. Sometimes we just have to wait and see, and do our best to enjoy what we have, for as long as we have it.

Reposting: A year in the life. (I found typos that I had to correct.) :)

It is crazy to me that one year ago today, I had a 6+-hour double mastectomy and reconstruction, and then enjoyed a lovely night listening to the melodic sounds of the Georgetown Hospital PACU, before drinking a cappuccino, eating a bagel, and being sent home the next morning for lack of available rooms. I must admit, the night prior to my surgery, which I spent at the Four Seasons for its proximity to the hospital and, let’s be honest, its amazing room service, robe & slippers, and ridiculously comfortable bed, was much more relaxing, despite my angst at what the next day would bring.

That night at the Four Seasons, the following morning, sitting in pre-op, desperately trying, before the valium really kicked in, to connect to the hospital’s wifi so that I could buy a pair of shoes that had JUST gone on sale, later that morning, being wheeled into surgery, waking up in recovery that evening and trying to choke down saltines, and then falling in and out of sleep, and eventually deciding to watch a movie on my iPad in a noisy crowded PACU, reminding the resident at 5:30am the next morning that before I could get up and try to walk around, someone should probably remove the catheter, seem both a million miles away and right next door.

So much of what I remember relates to my senses. I remember smells: the antibacterial soap that I had to shower with both the night before, and the morning of, my surgery; the antibacterial soap that’s in every bathroom at Georgetown Hospital; the ginger ale and saltines that I tried choke down when I finally awoke in recovery. I remember the room in pre-op being cold, and the warmth and comfort I finally felt when some lovely woman came and gave me a plush robe to wear until surgery, offered only to breast cancer patients, I believe, thanks, she told me, to some charity the name of which I can’t for the life of me remember. I remember the sounds: the questions being asked all around me in pre-op, nurses verifying names, and dates of birth, and medical histories; the beeping of monitors when I woke up in recovery; the aforementioned “melodic” sounds of the PACU, including multiple respiratory alarms on the patient (not) sleeping next to me, who was alternately not breathing and screaming; the sound of Jon’s voice in the morning, calling to say he was on his way to see me, after spending the night in the hotel, because visitors aren’t really allowed in the PACU.

I don’t remember much about the pain (yay, drugs!). I remember hating the drains. I remember reading the facebook posts from the day of my surgery and being so overwhelmed at all the love and support we received as Jon kept people updated on what was happening. I remember my brother referring to me on Facebook as his “baby sister” for the first time in decades, and that making me cry, but in a good way.

What a crazy freakin’ year it’s been. I’ve learned more about cancer than I ever wanted to know. I was reminded, in such a huge way, that I have the best support system in the world, including family, friends, neighbors, and even people who barely knew me. I learned that I really like zucchini muffins, and that a lot of my friends are much better cooks than I am, and that I am terrible at returning tupperware to people after they have so nicely brought us dinner, even when they put their name on the lid. I learned that once you have implants, when it’s cold, the skin on your boobs feels much colder than the skin everywhere else. (I have no idea whether this is related to reconstruction or implants, but I am continually fascinated and thought it was an important factoid to note). I had an epiphany this fall that I was not interested in having another surgery this year, that reconstructing my nipples would have to wait, and that 3-D reconstruction may never happen at all, and I might be fine with tattoos. I learned that sometimes, I perhaps open the sharing window way too wide, like when I talk about my non-existent nipples on the internet. I learned that to elongate my hobbit-like legs, I should wear straight jeans, not skinny jeans or boot cuts, and more pointy-toed shoes. How do the last 2 relate to the cancer, you might ask? Well, they don’t, but I’ve also learned that it can’t always be about the cancer.

I will remember 2012 as a year that changed me immensely, and taught me so much, for better and worse.

None of us knows for sure what the future holds, but in 2013, I am hopeful that our family will move into our new house, and start fillng it with love; that Abigail will, if Jon can let go of her for 7 weeks, start sleep away camp this summer, at the same camp where I spent 9 or 10 of the best summers of my life; and that Benjamin will start kindergarten and may even learn how to read.

And hopefully the Patriots will win another Super Bowl and I will be able to stay awake late enough to see it.

Happy 2013.

Kids

Lately, the kids have been watching old episodes of the Muppet Show that I bought on DVD. They’ve watched episodes with Gene Kelly, Carol Burnett, Elton John, and Steve Martin. Every episode, Abigail, who will be nine in April, asks several questions about the guest star. Who is that? What did he do? Was she an actress? How old would he be now? And then, inevitably, “Is she still alive or is she dead?”

Today, Abigail finally watched the episode with Gilda Radner. I say, “finally,” because for days, Abigail has been looking at the DVD box and saying that Gilda and I sort of look alike. Anyone who knows me knows what a huge compliment that is. It would be an even bigger compliment if she knew who Gilda was, and thought I was as funny and as talented, but I’ll take what I can get, even if it’s just being short with dark, frizzy hair.

Anyway, this afternoon, Abigail was super excited when the Carol Burnett episode ended and Gilda’s episode began. I had told her how funny Gilda was; how talented. And then the questions started, and my stomach sank.

Let me backtrack. Telling Abigail about my cancer diagnosis was quite possibly the hardest day of all the days since my diagnosis. Benjamin was only 4, and, even now, sometimes points to his shoulder when talking about his elbow, so I knew he wouldn’t fully understand cancer. Abigail, though, knew about cancer. She had seen pictures of my friend, Jodi, diagnosed 6 months before me and going through chemo, wearing a pink wig for a charity event, and had asked me all about it. Although I was diagnosed in November, I didn’t tell Abigail until some time late in December. I wanted to wait until I knew which surgery I was having, and when. I guess some little part of me hoped (irrationally, I know) that the doctor would call and tell me it was all a big mistake, and I would never have to tell her.

The day I told her, she had passed her belt test in karate. I considered not telling her that day, so that I wouldn’t burst her happy little bubble, but for a variety of reasons, that afternoon was the best time to tell her and Benjamin. So I did. At the time, both kids handled it well, all things considered. We all decided to go see Arthur Christmas after lunch (yes, Jews watch Christmas movies, too!). Benjamin lasted about 10 minutes (he can sit through a 2+ hour Star Wars movie but Arthur Christmas is too much). So it was just Abigail and me. Normally, in a movie, she’d snuggle up next to me, but not this time. After the movie, we walked through the mall, and I went to take her hand, but she wouldn’t hold it. This was way back when she was 7, and wasn’t yet embarrassed to hold my hand in public, so I knew something was wrong. That night, at Abigail’s bedtime, my husband was out running an errand. Abigail wouldn’t sit with me, and when I asked her what was wrong, she cried and said that she wanted daddy to come home and put her to bed; that she didn’t want me to do it and that she didn’t feel comfortable sitting by me. I called Jon and asked him to come home, which he did, and he put her to bed. I, of course, curled up and cried like a baby.

I thought maybe she would be clingy once she knew of my diagnosis. I wasn’t prepared for this.

The next day, I was driving her to a birthday party. From the back of the car, she said, “Mom, do you remember yesterday, when I didn’t want to be near you?” Did I remember? Um, yes. She then went on to explain that she was mad that I had told her on the same day that she passed her belt test, because she was so happy, and then had to be so sad. And she explained that the reason that she didn’t want to be near me was because being near me reminded her that I was sick, and that made her sad, so she didn’t want to be near me so she wouldn’t have to think about it so much. She then said that she was feeling better about it and that she was ready to be with me again. Just like that. From that moment on, she was largely back to herself. Kids.

So what does all this have to do with Gilda Radner? Well, lately, Abigail has been asking questions. She asked how I got cancer, how Jodi got cancer…questions I couldn’t really answer, other than to admit that we don’t know. The minute she started watching the Muppet Show, the questions about Gilda started. How old was Gilda Radner when this was filmed? How old was she now? Is she dead? When did she die? I answered them all, telling her that Gilda Radner had died. “When?” I told her about 20 years ago. “How old was she?” I said that I thought that she was in her 40s. “That’s your age. She was young.” Yup. “How did she die? Was she sick?” Yes. “Was it cancer?” Ugh.

I explained that it was, though she had a different kind of cancer than I did. But does that matter to an 8-year old? I don’t know. She didn’t say anything else, and she happily watched the show and laughed and seemed perfectly like herself. The conversation was definitely harder for me than it was for her and will easily stay with me longer, but what does she remember about it?

Gilda Radner would hate how not funny this post is. In her honor, I’ll try to write something funnier next time. I think we all could use it.

Lisa’s choice

When I first saw the breast surgeon after receiving my cancer diagnosis, she told me that, based on what she had seen, she would recommend that I have a lumpectomy. Initially, I agreed, and even scheduled the lumpectomy surgery. I talked to my dad, a physician, and  my mom, a nurse, and they thought that sounded like a good plan. What I remember the nurse practitioner saying, though, and what stayed with me for the next several days, was that my likelihood of survival was the same whether I did a lumpectomy or a mastectomy; what would change, however, was my likelihood of recurrence. As anyone who has followed my blog knows, I changed my plans and went ahead with a double mastectomy. It wasn’t just about survival, it was also about knowing myself, and wondering, if I didn’t make the more aggressive choice, how many times I might have to go through this, and how many times my family & friends would have to go through it with me.

So why am I bringing this up now? Because yesterday I read about a new study that found that many women are choosing to have prophylactic mastectomies of a healthy breast, despite the relatively low risk of developing cancer in that healthy breast. The article went on to say that “[t]he findings suggest that fear of the cancer recurring drives many women to have the aggressive surgery. But there is scant evidence that removing both breasts improves most women’s long-term survival, some doctors say.”

This was basically the first paragraph of the article, and by the end of that paragraph I could feel my blood pressure rising. Maybe it’s because it hit so close to home. Jon and I had talked during those awful days when I was desperately trying to decide what to do, about whether I was making the decision based on fear, not facts. My response to that was that I was the one who would have to live with the fear, nobody else. Even if it was a decision motivated by fear, was that so wrong?

We also talked about regret. If I had a lumpectomy and then didn’t get clear margins or had a recurrence after radiation and then needed the mastectomy anyway, I wouldn’t be able to forgive myself for not having the courage to do it from the beginning. With a mastectomy, it could be that I would never know whether I had done the right thing. Maybe they’d find something during the surgery that would indicate that it was the right decision, and maybe they wouldn’t (they did). Would I always wonder whether I had made the right choice? Would I regret  acting so aggressively when it wasn’t clear that it was necessary?

The interesting thing is, I never even thought about having a single mastectomy. It didn’t even cross my mind. That decision wasn’t about recurrence, or survival. Truthfully, it was about what I thought would give me the best results from a plastic surgery perspective. If you remove one, they’re still going to operate on the other side to try to make it match. I did think that I would look down at my “healthy” breast and wonder if something was growing there. But I also thought that I would look down at the healthy side and be reminded of what I used to look like. The truth is, now, a year later, I don’t even remember what I used to look like. I have two matching reconstructed breasts, both with similar scars, and when I’m dressed, they look exactly alike. As my plastic surgeon said after my reconstructive surgery, “I think you’re less lopsided now than you were before!” Ah, plastic surgeons.

The article made me mad because nobody can understand what goes into the decision to have a double mastectomy, particularly when the choice is truly yours, after the doctors have told you that either option makes sense. Of course long-term survival is the ultimate goal, but this is my body. And yes, a double mastectomy is major surgery (more major than a single mastectomy, I suppose) that some might argue is “unnecessary,” because it wouldn’t increase my likelihood of long-term survival. But I can tell you that, other than a brief moment of insecurity after reading the article, I have never regretted the choice that I made. Maybe it wasn’t 100% medically necessary, but it was necessary for me to be able not just to survive, but to live.

Following that article, I read today’s article in the New York Times about how mammograms aren’t really necessary, because although they are diagnosing breast cancer earlier, “the number of cancers diagnosed at the advanced stage was essentially unchanged. If mammograms were really finding deadly cancers sooner (as suggested by the rise in early detection), then cases of advanced cancer should have been reduced in kind. But that didn’t happen.” This follows on the heels of an article that I read, where I can’t remember, that some women who are diagnosed with early breast cancer may not even need treatment and may endure grueling surgeries, radiation, and chemo for a tumor that would never have caused them any trouble.

This one didn’t make me as angry. It did make me wonder whether I was one of the women who would have been better off not knowing about my cancer. Would it have eventually grown into something worse if I had left it alone? Did I have a double mastectomy for no reason? At the time I made the decision I knew that I would have moments of doubt about my choice. But in the analysis, I decided that doing more was far better than not doing enough.

I believe in my heart of hearts that I made the right choice. And it was my choice. I had information from lots of doctors, and support advice from my closest family and friends, and from women who have been down this road already, while making the decision, but ultimately, the only one who could decide what I could live with, was me.

Maybe I should stop reading so many articles.

Happy Anniversary (These Boots Were Made for Kicking Cancer’s Ass)!

One year ago at this time, I was enjoying a trip to Disney World with our good friends, the Blooms (hi Ronda, who probably can’t even read this because she lives in Great Neck and she still doesn’t have power after TEN DAYS following hurricane Sandy and there’s a Nor’Easter hitting them right now so even if she did have power after Sandy she probably wouldn’t after tonight anyway). The weather was beautiful, our kids and their kids had rekindled their friendships easily despite barely seeing each other since our last Disney vacation with each other 2 years before, Ronda planned every minute of every day so that all I had to do was show up…it was a great week.

One year ago last week, the night before we left for Disney, I received a letter from Washington Radiology informing me that my mammogram had shown something that required follow up. I remember I was in the driveway with a couple of friends when I opened the letter (Barrie, Debbie, Tara, do any of you remember this?). At the time, I sort of laughed, because I had received the same letter the year before and it turned out to be nothing. I remember saying to my friends, OF COURSE I’m getting this letter and OF COURSE it had to arrive the night before my vacation. But the truth is, I didn’t really worry about it at all. So many women have to go back for follow up. Isn’t that one of the arguments against mammograms before 50? All the stress, anxiety, and additional costs that result, when so often nothing is found?

One year ago next week I was talking to my dad (hi dad!), after the follow up showed that in fact there was something and that I would need a biopsy. My dad is an OB/GYN, so when I called him to say that I would need a biopsy he immediately gave me the statistics. I don’t remember the exact numbers, but basically a lot of women have mammograms, some of those women are called back for follow up, a bunch of those women require a biopsy, and less than handful of those women end up having cancer. Don’t quote me on that, because I don’t think that’s the actual language from the New England Journal of Medicine, but you see the point. The odds were in my favor. And nobody, not the radiologist who did my follow-up ultrasound, not my dad who talked to the radiologist, not the radiologist who ultimately did the biopsy and saw the sample, not even my friend who thinks every bump on HER body, no matter where she finds it, is probably cancer (hi Jenn!), thought this was cancer.

And yet, in three weeks, it will be exactly a year since I left the line at Starbucks to take the call from the radiologist, who would tell me that I was on the wrong side of the statistics (well, he said it a lot less eloquently after making sure that I wasn’t driving a car, of course).

Somehow, as savvy and self aware as I am in other areas of my life, and as clearly as I see things like this in other people’s lives, it hadn’t occurred to me that the one-year anniversary would sneak up and smack me in the face like it has. How could it? It’s not like I didn’t know when it was coming. I was diagnosed the Monday before Thanksgiving, which makes it pretty easy to remember. And the truth is, although I was on the wrong side of statistics (OMG that word is hard to type! And I won the typing award in high school!) with respect to being diagnosed with cancer in the first place, all the news that came after that was on the right side of the statistics in terms of treatment and outcomes.

I should be celebrating that one year after my diagnosis, I am healthy. I feel good. My gynecologist told me at my recent annual appointment that my reconstructed boobs look great, and that she’s seen A LOT of reconstructed boobs so that means something. I have great health insurance that has covered almost all of my cancer-related expenses (assuming you don’t count the new clothes I had to buy or the shoes I “had” to buy for my mental health) In so many ways, I am so lucky. And maybe that’s why the anniversary, or at least the anxiety related to the anniversary, of my diagnosis came as such a surprise.

I’m so happy that right after my diagnosis, Jon suggested that I buy a pair of really nice boots, a pair that I never would have bought before my diagnosis, so that I could “kick cancer’s ass” with them. And so I did, because I believe that as the head of our household, I should always listen to my husband when he has ideas about what’s best for me, or our family. (LEGAL STATEMENT: For the purposes of the preceding sentence, “always” means “only when his ideas include me buying new shoes”.)

And do you know what’s great? Now that the anniversary of my diagnosis is almost upon us, it’s finally time to start wearing those boots again. There are a lot of things that remind me of my diagnosis that I never want to see again: the over-sized zip-up fleeces and button-down shirts, and pajamas that I wore after my surgery and the dry shampoo that I used when I couldn’t wash my hair any other way come to mind (the zucchini muffins do not).  But these boots (and the zucchini muffins) are a different story (which is good because they weren’t cheap (the boots, not the muffins). I desperately hope that I never need to kick cancer’s ass again, but wearing these boots is a welcome reminder that when I had to, I did. Happy anniversary.

This is going to hurt tomorrow…

Today I had my first personal training session, in an effort to reclaim my lost youth, waistline, and, most importantly, upper body strength. Ok. That’s not entirely true. My first personal training session was last September, not long before my diagnosis. I was supposed to go back for more sessions, but once the proverbial ball started rolling in late October, I finally, after all these years, had a bona fide excuse to avoid the weights. See? Even with cancer there are silver linings.

I’ve known for months that my upper body strength wasn’t what it was before the surgery, which isn’t saying much, given what my upper body strength was before the surgery. Lifting Benjamin (my 45-pound 5-year old) when he’s throwing a tantrum and goes all wet noodle is now virtually impossible and I’ve had to resort to dragging him with my leg (kidding, mostly). Then, this summer, I took the kids up to my parents’ house for a few days. We went to the pool, and Benjamin wanted to go off the diving board. Because he hadn’t yet passed the pool’s required deep-water test, I had to be in the deep end with him to make sure he could swim back to the wall safely once he cannonballed himself into the pool.

My initial concern was that I wouldn’t be able to tread water as long as I would need to. As it turned out, treading water was pretty easy. But when I tried to swim freestyle from the shallow end to the deep end (less than 25 yards) to meet Benjamin, I couldn’t do it. I don’t mean that it was hard, I mean I couldn’t do it. I would do the strokes, but my body would barely inch forward. And although I know I should have been kicking more, something that always kept me from medal contention on my swim team back in the day, I was flabbergasted at how little propulsion I could muster using only my arms. So I switched to breast stroke, which, proved much easier. Isn’t it ironic? Don’t you think?

So today I went to Lifetime Fitness, did a quick cardio workout, and then went to meet Shelby, my trainer from last September, for the real work. I had approached him last week about doing some sessions again, and although he already knew about my surgery, it is seriously awkward to talk to a 20-something, male, personal trainer about your mastectomy, no matter how lovely and professional he is.

My session went reasonably well. We started off with some really great stretches to increase my flexibility and range of motion, many of which were variations on exercises the physical therapist recommended months ago. Then it was time to get serious. Squats. I reminded Shelby that I wanted to focus on upper body strength, but he wasn’t hearing it, and reminded me that there was plenty of time to cover ALL my areas of need (well maybe not in one session, given my many areas of need, but eventually). So squat I did.

Eventually, we arrived at the bicep curls. He handed me two, 10-lb weights and told me to do 10 bicep curls on each side. I suggested that 10-lb weights might be overachieving, given that I never used them BEFORE my surgery, but I told him I would try. Halfway through my first set, Shelby suggested that 7.5-lb weights might be better. Score one for me. Then we went to do alternating sets of planks, crunches, and push ups. The planks and the crunches were fine. When we went to start the push ups, Shelby said that I could start with modified push ups, so that we could see where I was. Well, a few moments later I was face down on the mat. I was able to lower myself, but when I went to push myself up, the muscles just weren’t there. I laughed, and Shelby was great, and told me to start over, not go so low, and give myself a break, which I did.

Although intellectually I know that it’s not a big deal that I couldn’t do even one modified push up, it still felt pretty crappy. I mean, it’s a MODIFIED push up, for the people who, like me even before the surgery, lack the strength to do “real” push ups. But I am happy that I took the first step and talked to Shelby, as embarrassing as it was. And even happier that I took the second step and showed up to do the work.

Tomorrow, I know I’ll be sore, and barely able to move, but next summer, I plan to race my kids to the deep end, and maybe even win.

October is Breast Cancer Awareness Month…

And I don’t care.

Maybe some of you find that surprising. I found it a little surprising, honestly. After all, I have the Patriots breast cancer awareness hat with the pink edges, which I’m sure I bought after seeing it during a game played in October. I’m sure that I have historically purchased items just because of the pink ribbon, indicating that a percentage of the proceeds would go to breast cancer research. At the time, I felt that  if I participated in some way in breast cancer awareness month, or if I bought products with a pink ribbon, I would be standing with the countless women who had been diagnosed with the disease. How totally naive I was.

Last October came just a few months after one of my very best friends (hi Jodi!) was diagnosed with breast cancer. By then, she had already had her double mastectomy and, if I remember correctly, was deep in the throes of chemo. I struggled to figure out what I could do to help. It seemed like the best I could do was to send her things to try to make her laugh and throw money at anything with a pink ribbon. If I heard or saw something about breast cancer, I felt obligated to listen or watch. I felt I owed it to Jodi to know more, to care more, to be more aware.

It was late in October when my mammogram came back with some concern and by Thanksgiving, I had been diagnosed myself. As soon as I was diagnosed, I couldn’t even look at a pink ribbon. I don’t think I’ve worn my pink-trimmed Pats hat even once since I was diagnosed. When MLB did their breast cancer awareness day, I turned off the tv. Although I love the show Parenthood, last week’s very special breast cancer episode still sits unwatched on my DVR. And today, when every show on Sirius radio that I wanted to listen to was talking to Elizabeth Hurley about the wonderful work that Estee Lauder does to raise money for breast cancer awareness, I thought I might lose it.

For months, I have been desperately trying not to be aware of my breast cancer. I have been trying not to wake up every day thinking about everything that’s happened, wondering whether it’s going to come back, hoping that every ache and pain I feel isn’t a sign that it has. Other women who go through this (hi Jodi!) become activists and fundraisers and heroes to the women who are subsequently diagnosed. I, on the other hand, have done everything I can to pretend that none of this ever happened, but hoping that with a little more time and distance, I’ll be able to figure out how I can turn this experience into something meaningful and positive.

So of course I believe in raising money for more research into the causes of breast cancer, and into the best treatments, and to provide much needed tests, outreach, and care for women who otherwise can’t afford it. But for now, for my own mental health, I need to be a little less aware of breast cancer. Hopefully the rest of you can pick up the slack. And if any of my New England friends want to borrow my Pats hat, I’m happy to share it with you. But don’t get too attached, because I know that soon enough, I’ll want it back.

The Camp Tapawingo Time Warp

This weekend, I took Abigail to Maine to see the overnight camp where I spent every summer, starting when I was nine until I went to college. For those of you who never went to overnight camp, the idea of sending your 9-year old away for 7 weeks of the summer may seem ludicrous (and for the record it was 8 weeks when my parents first punted me out of the house in 1980). And there’s a small part of me that, now that the time is upon us, thinks that you may be right. But the rest of me knows that camps like my camp, Camp Tapawingo (a place of joy in Sweden, Maine, in case you were wondering) and probably even camps not like my camp, provide an amazing opportunity for personal growth, even at age 9.

Tap girls from the 80s may remember Mr. Mike’s classic speech, complete with hand motions, about the importance of flapping your own wings and doing your own flying. At the time, we mostly laughed at the hand motions (I can still see him in the dining hall, flapping away) but the lesson was largely lost on us. Now, as a mom, it is so clear what he meant and how right he was. Although Abigail is 8, I still often cut her food, help her get dressed, help her clean up, do her laundry, put it away, make her meals, clean up her meals, etc. At her age, she could and should be doing a lot more for herself. Although she would resist (loudly and strenuously) at first, I do think that she is craving more responsibility. Camp provides that for her in a safe, nurturing environment. Serving and clearing of the table, following her daily schedule and making sure that she’s where she needs to be when she needs to be there, making and following the job wheel for bunk clean up, putting away her laundry, eating or not eating her meals, and realizing that there aren’t unlimited snacks if she chooses not to eat her meal, how to be a friend, and how to work it out when your best friend (Abby Miller), at the suggestion of another friend (Jenny Castle!), moves all of your stuff into the bunk next door for reasons you can’t understand (sorry Abby, I had to say it)…these are all things that will help her to increase her self-confidence and her sense of personal responsibility.

But this weekend, wasn’t about any of that. And Debbie Bindeman Kleinbord, if you’re reading this, and you thought I was killing you with my Tap posts on Facebook, that was nothing. Get out your kleenex, girl, This is going to be good.

Before this weekend, I hadn’t been back to Tap since the summer of 1989, when I was 18 years old, and had just finished my second summer as a counselor. Driving to camp from Portland on Sunday, I felt just like I did as a kid, riding the Wilson bus from Logan Airport with all my camp friends, eager for signs that we were nearing our summer home. On Sunday, I passed some wacky hubcap place on Route 302, and I thought, “yay! the hubcap place!” as though I had done this drive last summer and every summer before. As I passed Sebago Lake, I smiled at the Songo River Queen. I reached Bridgeton and cheered when I saw the Gazebo (lots and lost and lots of sprinkles, please!) and Maine Street Variety (pizza!) and the Cool Moose, places I never expected still to exist so many years later. I turned onto Route 93 and amy stomach fluttered, as landmarks I thought I had forgotten popped back into view. And when I drove up the road to camp, I was as giddy and excited as I was when I was 9 and 10 and 11 and 12 and 13 and 14 and 15 and 17 and 18 years old. (I had to take a year off before I could be a counselor, so I spent the summer when I was 16 at Exeter Summer School, wishing I were at camp!)

What I couldn’t get over was the feeling that I had entered some kind of time warp, because camp is, in many ways, exactly as I left it. When Abigail and I walked into the dining room, the camp broke into “We welcome you to gray and blue.” And although they stopped quickly because Abigail was feeling shy and couldn’t take the attention (no child of mine, right?) I couldn’t believe that, although the camp is smaller than when I was there, the feeling in that dining room  is just the same. Abigail and I sat at the head table and ate off of the SAME PLATES that I ate off of as a kid (I confirmed this, for real). The campers looked largely like campers I remember from the 80s, with slight improvements to the hair and uniform, of course. I lead songs after lunch (while Abigail hid under the table, MORTIFIED) and sang songs the words to which I didn’t know I still knew, but all of which came back in an instant, as though no time had passed.

I looked at Abigail, sitting next to Lily Pecoriello, daughter of Abby Miller, whom I met at Tapawingo when I was 9 (she was almost 10) and who is still one of my closest friends (yes, despite her misguided attempt to move me out of the bunk) at the table, and I asked Jane, the camp’s owner, who was the director when I was there as a kid, whether looking at the 2 of them was like looking at me and Abby. And I almost burst into tears. The idea that Abigail and Lily could both end up at Tap (well, Lily is already there), is mind-boggling. Maybe they won’t feel the same way about camp as Abby and I did, or go there as long as we did (or maybe they will!). But even if they don’t, whatever experience they do have there will be almost identical to the experience that we had (hopefully minus an attempted bunk move). Racing down the stairs to the waterfront and trudging back up the hill after; the walk to the campfire circle to the beat of the tom tom; hoping for the opportunity to ring the bell signaling the end of an activity; the sound of the bugle every morning, before meals, and at bedtime; racing up the hill for flag raising and lowering; singing all the time, sometimes the very same songs that Abby and I sang when we were their age; making friends, some of whom last a lifetime, and some of whom come in and out of your life just when you need them the most.

Abigail was unusually quiet during lunch. She was shy and barely spoke above a whisper. I watched her taking it all in, and wondered how she would react. Of course I want her to love Tapawingo, but it has to feel right to her, too. At the end of lunch, after Mo, the head of waterfront when I was a camper who is still there today, had quietly and subtly drawn Abigail out of her shell, Abigail looked at me and said, completely unsolicited, “I don’t want to go home today. I want to stay here.” I am hopeful that this means that she feels the same magic that I did; that she knows just by watching it all, that it’s a place she wants to stay.

Vacation, All I Ever Wanted, Part 2

You may remember a few months back a post that I wrote about my upcoming vacation to Vermont. At the time, I had reservations about how I would feel there and whether I would want to share what I had been through with the people I hadn’t seen in a year. Well, we’re back from vacation and it was GREAT.

We went up to Burlington a few days before our trip to Tyler Place and stayed with a family we met at Tyler Place 3 summers ago. As soon as we landed at Burlington International Airport, I felt happy and at ease. Some of that is because I hate to fly, so I always feel relieved once we land, but how can you not be happy in an airport that has white, wood rocking chairs in the hallway that overlooks the runway? We drove through the UVM campus (yes, Amanda, I applauded the scenery) and headed down to Church Street for lunch. It was a beautiful summer day, as so many are in Vermont. Winter and spring lack color in Vermont, but summer and fall are SO beautiful! After a quick stop at Ben & Jerry’s (it’s Vermont, it’s practically required) and the UVM store, we headed to our friends’ house, which is conveniently located on the shores of Lake Champlain.

Spending a few days with our friends before heading to Tyler Place was just what I needed. Because these friends knew about everything that had happened this year, I could totally relax, without concern about whether the “c word” (get your minds out of the gutter, I mean cancer) would come up and what I would say. Jokes were made about my new ta-tas and that felt good. Our kids reconnected with their kids as though no time had passed, and I saw my UVM roommate, Amanda, and her two kids.

On Saturday, we drove up to Tyler Place. I was excited to be there, and not just because it was the start of a week of kid-free meals, all of which ended with a delicious array of desserts. At 5:30, we ditched the kids…I mean, reluctantly dropped them off into the loving arms of their counselors. I talked to Jon about whether I would tell anyone about my cancer, my surgery, my reconstruction. That night, there was no real reason to tell anyone anything. But what I hadn’t remembered was that last summer at Tyler Place, I had just left my job. Because my last day of work was the day before Tyler Place, many of my conversations last summer were about leaving work and what I would do with all my endless hours of free time.

By Sunday, as we all eased back into our friendships from the previous summer, people started to ask me how it was not working…how my year was….what I had done with myself now that I wasn’t working. When people asked about whether leaving my job was everything I had hoped it would be, it seemed impossible to answer without mentioning that my plans for the year had been largely derailed. So I told some people about the year, some with more details, some with less. And everyone was lovely and supportive, which I knew would be the case, but was relieved by, nonetheless.

Perhaps even more important was that I played a lot of tennis during the week. One of the things that I had hoped to do once I left my job was to start really playing tennis again after a LENGTHY hiatus. After I was diagnosed, although I continued going to the gym, playing tennis dropped off the radar. I was nervous that I wouldn’t be able to hit after my surgery, that things would hurt, or that I would lack the range of motion I needed to play well. Now, I’m no Maria Sharapova (her legs are as long as my whole body and I’m not nearly as blonde) but I have to say, being back on the court felt really good. I was inconsistent and my timing was off and at one point I thought I might collapse, but nothing hurt! Okay, a lot of things hurt, but none of them were related to my cancer, and that was a HUGE relief.

So Tyler Place was great. I played tennis, I did yoga, I ate wonderful food, I spent time with great friends, I spent time with Jon and the kids, I ate amazing desserts, I read in the hammock, I ate, I drank a sea breeze for the first time in 20 or so years, I ate some more, I worked out (once, but who’s counting), I came in second in the mixed doubles tournament, and then went and ate some more. It was a great week, because the kids had a great time with good friends,

because Jon and I were able to relax,

but mostly because for the first time in a long time, I felt like me.

What a day.

Forgive me friends and family; it has been 6 weeks since my last post. Although I’m not Catholic, for some reason, this is the opening line that’s been rolling around in my brain for the past couple of weeks. I have wanted to post several times, but for some reason, couldn’t organize the fleeting thoughts in my head that I had often thought about sharing. Tonight I decided to write a post, although I don’t expect it to be organized, because it was that kind of a day.

Today I did 2 things that you should probably never do on the same day when you’re at your best, let alone after breast cancer and reconstructive surgery. First, I went bathing suit shopping. After the debacle that was bathing suit shopping (a debacle only minimally related to my cancer and surgery), in a moment of obvious insanity, I decided that it would be a great idea (it probably wasn’t) to go to the Nordstrom lingerie department and get fitted for new bras. Since my surgery, I’ve been buying cheap, crappy sports bras, because I had no idea what my new size was and I wasn’t ready to spend time alone in a dressing room with a department store employee just yet. I knew, though, that Nordstrom had people trained in fitting post-mastectomy women. So with a little time to kill, and bathing suits being in close proximity to lingerie, I strolled on over. Although young, probably in her early 20s, my salesgirl (Side note: I’ve been watching a lot of Mad Men lately…now that I’ve typed it, I feel like that word is from the 60s and possible offensive. Is there another word I should be using?) was incredibly professional, thoughtful, and funny. I left that dressing room feeling MUCH better than I felt after trying on bathing suits, which was a welcome surprise.

After a lovely lunch with an even lovelier friend (Hi short-haired Lisa!) I went to pick up the kids at camp. I was waiting at a red light at a major intersection (Montrose and Seven Locks, for the locals). I was the second car in the line at the light. I was watching the traffic on Seven Locks, and noticed a car starting to turn left onto Montrose.  At the same time, I saw another car, directly in the left-turning car’s path, heading down Seven Locks. I thought, why is that car turning if there’s an oncoming car in its path, and then they collided. The minivan (turning left) stopped and the other car, a Rav 4, flipped onto its roof and slid to a stop, about 10 feet from where I was waiting for the light. I called 911 (as I’m sure about 30 other people did who witnessed the accident). 2 men bolted out of their cars to see if the drivers were ok. Other than calling 911, I was largely paralyzed and couldn’t decide what to do. I thought about getting out of the car to see if I could help, but their was glass everywhere and the driver of the upside down car crawled pretty quickly out from his upside down car, and, though bleeding on his hand and clearly in shock, walked over to the sidewalk on his own. I waited for the ambulance and police to arrive, and talked to an officer about what I saw, and then went and picked up my kids, as though nothing had happened.

Only it had. I realized something that several people have said to me but I couldn’t fully appreciate until that moment. I can worry all I want about whether my cancer will come back. I can worry that every normal ache and pain, whether from tripping in my big lady shoes, or from running without stretching, is a sign of something much more dire. But I can’t control the lady turning left onto Montrose. Nobody can.

I don’t say all of this to be maudlin or morose. Rather, I wanted to remind myself (and if anyone else wants to listen, fantastic) that I could spend a lot of time worrying about cancer, and chances are I won’t be able to help some of that. But overall, that’s not how I want to live. That’s why I made the choices I did with respect to my treatment.

Every day is a gift, even the ones that include bathing suit shopping.

And now, to leave you on a cuter/happier note, I’ll post a pictures of 2 of my most favorite gifts, and no, it isn’t a pair of shoes.  :)