Despair n. loss of hope; hopelessness

Today is a tough day. It’s not just that my candidate didn’t win. It’s not just that I was sad not to be able to tell my children that we had elected our first woman President, and that she was supremely qualified, maybe more qualified than any man before her, for the job. This loss was so much more. As I walked the dog this morning before anyone else was up, crying in a cold drizzle that mirrored my mood, the only word that I could think of to explain what I was feeling was DESPAIR. I am desperately sad that I have to explain to my children how a man who insults so many people so loudly and proudly could have the support of such a huge chunk of the country; that it was on this very platform of hatred and fear and anger that he managed to garner his biggest support; that when Abby asked me this morning what he stood for, I had no answers because if his campaign was any indication, it’s not much; when she asked if her muslim friends would be safe, I could only say yes, while thinking to myself that I genuinely hoped so.

The more I considered how I felt, and tried to put a name to my feelings, the more I realized that I felt much like I did the week after I was diagnosed with cancer.

Despair is defined as a noun meaning, “loss of hope; hopelessness.” When I was initially diagnosed, I spent the first couple of days crying and wondering what the next several days, weeks, months would look like. As my dad said at the time, “You’re going to be fine, it’s just a question of how hard the road will be.” I would burst into tears in the shower, the car, under my covers…anywhere my kids wouldn’t necessarily see me, so they wouldn’t be too afraid. I was so scared about what was ahead. And the not knowing, the lack of information, was brutal.

And that’s exactly how I feel right now. I want to jump ahead 2 years and see what’s happened. Who is his cabinet? Are they qualified? Does he care more about the country than he cares about himself? Are we in any real trouble anywhere in the world? Have the civil rights of friends or family members been curtailed? Does he consider the country’s emotional well being, or is it all about financial well being…for him, or for the country? I truly can’t picture what this presidency looks like. If his campaign is any indication, it doesn’t look like anything I’d be proud to support.

I am holding on to the fact that ultimately, we’ll be fine. I hear people talking about checks and balances and restraints such that no one person alone can affect the kind of change discussed during the campaign under our system. And I hope that they’re right, but somehow this feels different. When George W. Bush won, I was disappointed, yes. But I wasn’t afraid. I knew he was qualified to govern. I trusted him with our country, even if I couldn’t support everything he wanted to do. I don’t trust Trump with our country. He’s given me no indication that I should.

I am so thankful that I sent my kids off this morning to a school that teaches not just academics, but also  kindness and tolerance and acceptance and open-mindedness and love. Both my kids are sad about the outcome of the election, which is good, because it means that they are engaged and aware and they know what feels right and they care about humanity and the world around them. Apparently we live in a more of a bubble than I thought, though. And that makes me sad, too.

With my cancer diagnosis, hope creeped in slowly as I learned more about my cancer–how it would be treated, the pathology of the tumor, how far it had spread. I still don’t allow myself to think too far ahead, but I am hopeful now, five years later, that it won’t come back. Confident, no. Hopeful, yes.

So maybe it will help me to look at our new President-elect as a cancer, which doesn’t seem like too much of a stretch, honestly. And I’ll wait to find out more about who he REALLY is, and hope he’s not as awful as he seemed during the campaign. I’ll gather information as it comes, and try to find hope that, in the words of the radiologist who told me I had cancer, though it’s bad news, it’s not the WORST news. It may feel like it, but somewhere there’s a glimmer of hope. There has to be.  Love does trump hate, even if far too much of America doesn’t think so.

 

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On This Day

One of my favorite features on Facebook is the “On this Day” feature, which shows up daily in your newsfeed. As most of you probably know, it is a feature that shows you what other posts you have made on that date in years past. Some days, I read what I posted in years past and cringe. Why did I think that people would care that I ate chicken? What was it that made me think that whatever I said was funny, or important, or interesting enough to share? The best days, though, are when there are pictures. The pictures are always great. I love seeing pictures of days and events, sometimes completely forgotten, but at the time, meaningful enough to share.

Today in my “On this Day,” there were a whole bunch of pictures from a trip we took with friends to Disney World in 2011. I had quit my job just a couple of months earlier. Abby was 7 and Benjamin was 4. I was thinner. Jon had more hair. Abby’s teeth were gappy and crooked, and her hair was much shorter. Benjamin wasn’t wearing glasses regularly, his teeth were tiny little baby teeth, and his head was drenched in sweat (though that particular trait is still true today). I smiled as I looked through those pictures this morning, amazed at how truly happy all of us looked.

image2 [121939]image1 [121938]And then it hit me.

In the days before we left for Disney, I received the letter from Washington Radiology telling me that I needed to come back for additional imaging. I have a vague recollection of standing in my driveway reading that letter and being annoyed that it had come right before we left, and not in the huge pile of mail that would greet me when we returned. But the truth is, although I thought about it some while we were away, I truly believed that it was nothing more than a nuisance. Lots of women are called back for additional imaging. I had been called back for additional screening the year before and it was nothing. We had a GREAT trip, as evidenced by the happy faces in all the pictures I saw “On This Day” on Facebook.

image2 [121932]A day or two after we came home I went back for the additional images, and, as it turned out, an ultrasound, and a needle aspiration. A few days after that I had the biopsy, and, just a week after I posted those pictures (4 years ago next week), the radiologist called to tell me that I had breast cancer, sending me on roller coaster ride unlike anything I had seen at DIsney.

Those pictures that popped up on my newsfeed today are the last “before cancer” pictures that I have. I don’t mean physical before pictures, though I suppose that’s true, too. In the 4 years since my diagnosis I’ve gained 15 pounds, thanks to the anti-anxiety meds I started taking shortly after my diagnosis, or from the estrogen blocker I take to prevent a recurrence, or from the steady stream of Bridget’s zucchini muffins and peppermint mochas I told myself I absolutely deserved because CANCER.

But when I thought about the “BEFORE CANCER” pictures, it wasn’t really about how I looked. Those pictures are from the last time that I had the luxury of thinking it probably wouldn’t happen to me; that I could look at the statistics and say everything would likely be fine. Nobody thought I had cancer. Every doctor who looked at the images, including the radiologist who did the biopsy, said that it didn’t present like cancer. I had no family history of breast, or any kind of cancer. And as recent news stories have pointed out, the vast majority of women who have biopsies don’t end up being diagnosed with cancer. For most women, everything IS fine. But then it was cancer. Even though it didn’t look like it. Even though I’m not genetically predisposed. Even though the statistics were massively in my favor. Even though.

After my diagnosis, it has been all but impossible to think that it won’t eventually come back. Even though I did, and am doing, everything to prevent it. Even though the actual pathology of my tumor says that my likelihood of recurrence is low. Even though statistics are on my side. I can’t go back to before.

My hope is that anyone who looks at pictures of me then and now wouldn’t really be able to tell which was the before and which was after. I hope that my smile, Jon’s smile, the kids’ smiles, shine as brightly today as they did 4 years ago on this day. Yes we have all been changed. But in 4 years, we’ve come a long way. I am so grateful that statistics ARE on my side, even if I can’t fully trust in that.

After cancer hasn’t been easy, but on THIS day, I am happy to be where I am (minus the 15 pounds).

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Serious as Cancer

“Can cancer come back?” That was the question my 10-year old asked me last night right before she went to bed. Abigail was 7 when I was diagnosed. As I wrote about then, for obvious reasons, it was not an easy time for her. But looking back, in some ways, it was easier than it is now. When I was diagnosed, I don’t think she really know what cancer was, or what it could mean. She never specifically asked if I was going to die. Three years later, I can tell that she now has an awareness that she didn’t have then, and that it scares her.

I think it started last summer, when Tony Gwynn died of mouth cancer. Benjamin was at baseball camp that day, and the coaches talked to the kids about Tony Gwynn’s death. When he climbed into the car that afternoon, he announced, before falling asleep, of course, that he had heard about Gwynn’s death. Abigail, who hates not to know ANYTHING, wanted the details. I told her that he had died from mouth cancer. Silence. “Mommy? How come he died from his cancer and you didn’t?” Oof. I explained that some kinds of cancer are harder to treat than others, and that some cancers aren’t found until it’s too late to treat them to make you better. “So you found your cancer early?” I told her that I had. “And they could treat it and make you better?” I told her yes. She was quiet for a moment, and then said, “I’m glad you’re not dead, Mommy.”  Amen, girl.

In the months since then, we’ve had other iterations of this same conversation. During October, whenever she heard any mention of breast cancer awareness month, or saw the pink “reminders,” she would point out that we were already AWARE of breast cancer. Then she would say, “You had breast cancer, but you’re fine now, right?”  I would smile, and nod, and give her a hug.

And then inside, I fall apart. I hope that she’s right. But you know what? Three years after my first surgery, I still wonder almost every day whether the cancer will come back, or whether it already has. But Abigail can’t know that. So last night, when she asked the question, I had to take a minute before I could answer. “Yes, cancer can come back.” And she said, “But you take medicine to keep your cancer from coming back.” “Yup.” “So your cancer won’t come back.” “That’s the plan” I said (because as you all know, I am not comfortable announcing anything as an absolute, for fear of jinxing it). And then she looked at me, smiled, and said, “oh, it’s not a plan, it’s happening!”

I love that she’s so positive, and I am so thankful that she’s the kind of kid who says what’s on her mind. Well, maybe not this morning, when what was on her mind was less constructive, but you know what I mean.

Kids are amazing creatures. Benjamin fortunately  doesn’t remember much about my surgeries, and sometimes tells people about that time that I was in the hospital with a broken leg. Abigail remembers EVERYTHING about that time, including what pajamas I wore when I came home from the hospital and exactly what I said to her when we told her about my diagnosis. She took a break from talking about it, but she’s working through it again.

The new cancer terminology for my health status is “no evidence of disease,” which, when it comes to cancer cells, is great news. But three years post diagnosis there is definitely still evidence of my disease, and it may take a while before it is truly gone.

So this was a pretty serious post to come back with after a lengthy hiatus. I promise that I am noodling a much more entertaining post related to my post-diagnosis weight gain, and which will include a reference to not coveting thy neighbor’s ass. Stay tuned.

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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.

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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.

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