Dating After Breast Cancer

I am in a support group of young breast cancer survivors. For the most part, we are all in our 20s and 30s and have a significantly different view on cancer than our older, but equal, survivor sister counterparts that are 40 and above. A decent amount of these beautiful young women have husbands and families and they were their source of strength and courage during their battles. A number of us, however, are single and have to face the inevitable truth that we have to find our husbands (or, let’s get real, even a date) post-breast cancer and, for many of us, post-mastectomy. This post is specifically for them–to put a rather uncomfortable subject out there because so many of my survivor-friends face these same challenges, and I want them to know they are not alone.

When I was first diagnosed and during and after all of my treatment I was dating someone. I had met him in law school and we dated for three years before I was diagnosed and during and beyond my battle with breast cancer. Unfortunately, last fall, we realized that we were just not the perfect fit and we went our separate ways.

A good friend of mine was diagnosed with breast cancer a month after I was and I was, therefore, the guinea pig in our relationship. I would go through a particular phase of treatment right before she would so I would tell her all the horror stories of what to prepare for and expect. I remember one night we were talking on the phone about hair loss and laxatives (you know, typical girl stuff) and she got really quiet. This is unlike either of us, so I asked her what was wrong. She responded in a quiet, shaky voice, “Abby, what guy is going to want to marry me after having a mastectomy?” I responded enthusiastically and unwaveringly, “Ummmm any guy who is WORTH IT!! If some guy doesn’t want to get to know you or marry wonderful YOU based on a few scars then he is not worth the time of day!” I meant this whole-heartedly. At the time I was still with the guy I had been with before breast cancer so I was not in the same place as she was. I figured I would never have to know how it felt to be single after a mastectomy, but still I meant what I told her with all of my heart.

Fast-forward ten months and there I was single and crying to my sister on the phone one day, “What guy is going to want to marry me with these scars?” And she responded with the same Beyonce-like tone I used with my friend, “Ummmm any guy who is WORTH IT!! If some guy doesn’t want to get to know you or marry wonderful YOU based on a few scars then he is not worth the time of day!” I found comfort in this, but continued to refuse to date or even really look in the direction of anyone belonging to the male category for the next nine months. Besides the whole I-have-scars-across-my-chest thing, after treatment for breast cancer you feel much less like a woman and much more like a hairless, prepubescent, eleven year old boy. Your hair is growing back in a weird, confusing way; you aren’t in good shape; you are mushy where you used to be toned;  you have been through a war and it shows.

So, for the next nine months, I was determined to return at least to a girl-like state. I wanted to resemble a female again. So, I hit the gym religiously. Seriously guys, maybe a tad too religiously. I had a really bad stress fracture in my foot and my doctor told me not to run on it for the next three to four weeks…I hit the treadmill the next day. After going through breast cancer, when someone tells you to slow down you just kind of laugh to yourself because you know you aren’t going to follow those instructions. You had to be at a standstill for a year of your life during treatment while people pumped your body with poison and cut off your breasts, so yeah you aren’t slowing down unless someone literally ties you down, but you would probably just bust free from that anyway like the Hulk when he gets irritated.

When I started to feel a little more like a female, I noticed that my hair was actually long enough for a real haircut and I got a bob. It was one of the most glorious days of my life. I walked, wait, no, I strutted out of the salon after getting my first haircut in one and a half years feeling like Jennifer-freaking-Aniston. It was like “Extreme Makeover” up in Baltimore. I went in there looking like someone who had lived under a rock for twelve years and came out looking like Giselle. Ok, maybe not that great, but I felt pretty confident. There was no limit to what I could do after this haircut. At long last, I am woman AGAIN, hear me roar.

The whole dating thing was still extremely low on my list of priorities, but lo and behold the day came…I was asked out on a real official date by a real official member of the male species. It had taken me over nine months to gain the emotional capacity to accept a date with a boy, but I did it and the date was set. I figured it would be fine. It is not like he would ask about my scars on the first date, right?! We would probably just talk about the weather and discuss our favorite type of candy—boy was I wrong.

He asked to meet up for frozen yogurt. That seemed harmless enough! If he was terrible or a woman disguised as a man, it would only take up less than an hour of my time. We had been emailing back and forth when the first red flag arose. He asked me about my incisions from my surgery. He actually asked me how bad they were. My heart absolutely sank. We had not even met up yet and he already wanted to know about my scars. I held back tears and responded to his inquiry acting like “Hey this is no big deal that you are belittling me to a scar after everything I have been through. Sure, this is totally normal and acceptable in society.” But, deep down inside, I knew that this would not end well, but yet I still met up with him. I am not sure if I just wanted to show off my incredible new haircut or what, but I stupidly proceeded. Within five minutes of meeting him he saw my port scar. I wear things all the time that show my port scar because, honestly, I have completely forgotten that it is even there. It is a part of me now. It isn’t a scar, it is a story, about how something wanted to kill me but I am just so much stronger than it that I KILLED IT. Boom. Power to the people.

I saw his eyes land on my port scar, we had not even gotten the frozen yogurt yet, and he said, “Oh! Is this the only scar you have!?” With this tone in his voice like “Oh please, dear God, let this be the only scar you have.” It took everything I had in my small frame to not vomit and cry all over him when he asked me that question. The very first guy I go out with after breast cancer and THIS is what he asks within the first five minutes of meeting me?!?! Is this some weird new reality show that Howie Mandel is hosting or something? And, if so, where is the nearest exit? In a defeated tone I told him, “No, this is not the only scar I have. This is from my port. Do you know what that is?” Of course he didn’t know what a port is because he had not been through what I had. He did not understand that I am more than a girl with scars, but I am someone he will never have the opportunity to get to know because he does not have the capacity to ever understand the advantages of dating someone who has been through what I have. (Email me and I will gladly list off all the reasons why dating a cancer survivor is optimal.)

Needless to say, I am back on boy hiatus. Dating after breast cancer is one of the most emotionally traumatizing things I have ever been through (and I have been through a lot!). Many of my young single survivor-sisters report that they feel the same way. And, yes, at the end of the day, the right guy won’t care. The right guy will be totally blown away by my ability to make any situation the best moment of his life because cancer has taught me how to appreciate life that much and how to show others how to do the same.

Abby Blog 7-8-13

Celebrate Everything

A few weeks ago, I was sitting on a train on my way from my now-hometown of Baltimore to New York City to defend my master’s thesis at New York University and I looked around at the individuals that surrounded me. My eyes first landed on the man across the aisle reading the Economist. I could tell, by his impervious gaze, that he actually understood every concept he was reading. I was envious, I was impressed, I nodded my head approvingly. He was obviously heading into the city to take advantage of the rest of us that still haven’t quite figured out how to make the best of these hard economic times, or just life in general. Next to him was a woman who was pregnant and, well, to put it simply, flawless. She made pregnancy look effortless. Pregnancy is never supposed to look this great, I thought, but she owned it. Much like Tom Brady wearing UGGs—it doesn’t make sense, but somehow it just works. Next to me was my dear mother by my side as always. She was snapping pictures of me and beaming with pride as I headed to New York to defend my thesis, earn yet another degree, and finish something I had started three years prior. We were just basking in the moment, and celebrating all the way down the tracks.

***

For those of you who may not have picked up on it, I moved to New York right after law school to get my master’s degree at NYU (and, yes, I like school, thanks for asking). While residing in the East Village of Manhattan, I had the experience I think every twenty-something should have: I lived in an apartment so small I believe it was originally designed for gnomes; I lived off of soup and whatever protein bars happened to be on special that week; I had a “pet” mouse named Charlie; and I encountered some of the most extraordinarily interesting and brilliant people I will probably ever meet, so it was all worth it. I studied at NYU and for a year the little life I had made for myself in the big city made sense. The following fall I was diagnosed with breast cancer. Pump the brakes, WHAT!?!?

So, I moved home. I left New York in an abrupt way and headed back to Ohio where I was born. I moved back into the house I was raised in. My doctor initially suggested that school would need to be put on hold for the time being. I was adamant about staying in school during treatment. I wanted to complete my degree. He told me it was up to me, but after going through my mastectomy and the recovery that involved knowing that was just the beginning, I knew that I had no choice in the matter—school would have to be put on pause much like the rest of my life. My life was treatment. Treatment became my life.

But, fast-forward to present day, and there I was. After being diagnosed with stage three breast cancer, after undergoing a mastectomy, after losing my hair, after accumulating the physical and emotional scars that cancer leaves behind, I was on this train back to New York City surrounded by all those “cancer-free” people I was so envious of while I was home last year, lying on the bathroom floor sick and tired of being so sick and tired.

During treatment I often thought of those lucky ones out there who were just going about their daily routine. The simple yet beautiful monotony of those repetitive days seemed so incredibly far beyond my reach. I wondered when commuting to work, or buying groceries, or planning things with my friends would ever become the norm again. Would I ever get to experience those things again? Those simple experiences that make up life seemed so inaccessible, but yet were all I wanted. The feeling I experienced in that moment, on that train surrounded by those people I longed to return to during treatment, realizing what I had conquered was completely overwhelming. I was finally back. I was FINALLY BACK on the other side. People didn’t see me as the cancer patient. People just saw me as some girl who voluntarily bobbed her hair who was scurrying around reading her thesis, developing and honing arguments. They could not see my scars; they did not know what I had been through. They did not know I took an extremely undesired break from life last year. For all they knew I had been on that train alongside them every day.

Being back in the city was like walking through a very loud and trendy time capsule of my life—it emphasized everything I had experienced right before I was diagnosed. New York City is the dividing line between Abby pre-cancer and Abby post-cancer. The first time I returned to New York after I was diagnosed I spent a majority of my time there crying as I was completely overwhelmed by what the city symbolized: the loss of my good health, my innocence, and that feeling of invincibility. This return to the city, however, was much different. This time I pulled it together and instead of immersing myself in the sadness of what my life used to be, I turned the other cheek and experienced the city for what it means to me now. The trip was a huge success. My thesis defense went superbly and I graduated. The city means, therefore, in a very palpable way, that I have made it, I am allowed to be happy, celebrate being free, and fully embrace the Abby I have become after all this, which I fully believe is the Abby I was always meant to be.

***

Today marks one year exactly since I finished treatment completely. Last year, on June 4, I went into the hospital for radiation for the very last time. The following day felt very strange, as I did not head to the hospital for my daily appointment with the laser beam. After treatment I felt lost. I did not know what my role was anymore. If I am not the cancer patient, or the “cancer cheerleader” as I was called, then who am I? Funny thing is, I am still not entirely positive. I have reached many milestones for sure, but I realize life is just this ever-evolving, fluid set of treasured moments. My role is not the “cancer cheerleader.” Rather, my role is to share these precious moments that make up my life with others, make someone’s own journey a little easier by utilizing what I have learned throughout this whole cancer mess, and, of course, loyally stand by the Dallas Cowboys as they botch yet another season.

My friends make fun of me because I literally celebrate everything. Last September, I had a party for my one-year cancerversary–the one-year anniversary after I was diagnosed. Last October, I celebrated the one-year anniversary after I had my mastectomy. Last December, I had another party for the anniversary of when I started chemo.  Then, in March, I had yet another gathering to commemorate the day I finished chemo. My 30th birthday party literally shut the entire city of Baltimore down. (OK it may have had something to do with the fact that it was opening day for the Orioles, but still, it was a big shindig.)

In addition, there have been many parties and dinners in-between to celebrate random things like, “Oh I think last year on this day I noticed my first post-chemo nose hair sprout we gotta DO something to celebrate!!!!” (Yes, you do lose your nose hair during chemo.) Or, “Oh we HAVE to go celebrate the fact that one year ago today I weaned myself off of [insert prescription drug of choice here].” But, what am I doing today, you ask? Today all I am doing is basking in the beauty that is another precious day of life and remembering how hard I fought to get here. And, OK, OK, if you know me at all, I will probably end up getting together with my friends and dancing and laughing the night away. It may become a party, because that is just how us cancer survivors roll. We recognize how necessary celebrations are because we have been through so many moments where things are going just so terribly wrong. So, here is to celebrating everything because, well, why not?

Blog Pic 6-4-13

 

It’s a Mother’s Day Moment!

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This picture was taken around Mother’s Day last year. It is truly incredible the difference one year can make. Last year, I was bald underneath that hot pink wig. During my year of treatment for breast cancer, my mom never left my side. It is hard to select one exemplary “mother moment” from the countless ways she was there for me while I battled breast cancer to demonstrate the unfailing love and support she has always shown my sister and me. My mind wanders back to those endless nights when the bone aches from treatment were so overwhelming that the only thing that helped ease the pain was to lay in a steaming, hot bath. My mom would come in the bathroom and just sit there next to the tub with me. We would talk about everything and I would do my best to tell jokes to keep us laughing as I like to do, but they often fell a little short. Turns out cancer is kind of a buzzkill. We would talk about “Property Brothers” or “House Hunters International”—the two TV shows that often single-handedly got us through the darkest times. What was on my DVR list was often the highlight of my day as all I could do much of was lay on the couch in some degree of pain. My mom was there for me every single moment. She kept my medications at the ready. She drove me to every appointment. She asked my doctors every question. She would sit next to me when I would cry from the constant, overwhelming pain or when I would cry because I felt just so unbelievably ugly all bald, pale, and weak.

One night, when my mom was again loyally by my side, I remember telling her that I did not know how I could ever possibly repay her for all she helped me through. I will never forget her response. She simply said, “Abby, I am your mom, if my child is sick I take care of them. There is nowhere else I would be.”

Happy Mother’s Day to all of you moms out there that know that kind of love that you, too, have for your children.

Love to you on Mother’s Day.

A Farewell Letter to My Twenties

My dearest Twenties,

There is a moment in everyone’s life when they have to say goodbye to you. I cannot believe that moment is finally here. It is difficult because we have been through so much together, but also exciting because there were times when I feared I would not have the privilege of seeing you to the end. My darling Twenties, you were lovely and ultimately had a rather dramatic conclusion. I found myself because of the relationship I had with you. And now, after ten magnificent years, I have to bid you adieu.

You were always there for me and our relationship was unfairly interrupted by cancer. Cancer put such a strain on our relationship. I couldn’t be with you the way I wanted to be. I couldn’t be with you the way that you wanted. Instead of just being fabulous twenty-somethings together, I was busy getting MRI’s, CAT scans, PET scans, bone scans, blood tests, genetic tests, a mastectomy, and chemotherapy. I was preoccupied by watching my long, beautiful brown hair fall out into my hands and witnessing the muscle mass in my legs disappear during the chemo regimen. My life was consumed with surgeries, bone pain, nausea, side effects, medications, shots, having a port placed in my chest, surgeries, radiation, and more surgeries. Cancer stole something from us that we will never get back.

You were there when I was so sick I feared I was going to die–not from the cancer, but from the treatment. You were there that night when I was in so much pain during a particularly grueling week of treatment that I whispered to my mom, as I lay on the floor unable to move, that I was scared to fall asleep because I was so terrified I would not wake up the following morning. You were there, Twenties, when I neglected you to fight so I could live in order to get rid of you—to ultimately outlive you. You were there when I fought to get to my thirties and leave you behind. And, now, after all that hard work, I made it. I am walking away. But I will never forget you. You and I are like old war buddies. The bond we created during the battle we faced together is simply unbreakable.

We are both so focused on moving on and letting each other go, but please take a moment and really see me so you can remember what we had together. If you ever do take an instant to look back, you will see that I am still the same girl you met ten years ago in college when I was literally bouncing off the walls with energy—with the same heart, the same forgiving spirit, the same eyes that were always fixated on you, the same curiosity and desire to witness new things, to experience the world together as a team. You meant so much to me—you still do. You showed me so much about myself and I will never forget that. You will always be a part of me, even though we will never see each other again after today

I admit you are a rather messy chapter in my book of life. The pages are dripping with red ink just aching to be corrected. There are parts of you that are completely torn out and missing, that I will most likely never see again. The years walked out of my life and took the pages with them. There are other parts that seem to have recycled themselves over and over again as I made the same repeated mistakes, failing to learn from them. But isn’t that exactly what our relationship was for? Isn’t that the theme of the infamous twenties? I believe that it is and, therefore, I can walk away knowing that this relationship was a success, knowing there was some marvelous order amidst the confusion that was our time together.

And now, my thirties lay in front of me shining with these beautiful, crisp, blank pages. The pages are all pumped up. They’ve heard about me; therefore they are prepared to get dirty, ready to be filled with new memories, new relationships, and new lessons. (And hopefully a trip to the Super Bowl with the Dallas Cowboys. Oh, wait; Tony Romo’s contract was renewed. Never mind.)

We had a promise made, Twenties, to get through them together, and we did. So, here we are, our very last night together. All I want is one more night of confusion, amazement, and possibility. That is my twenties. That is you. We got through something miraculous together, and I want to celebrate that with you

Now, as we part, and move on in our lives, know that I would not trade the beautiful, complicated, and often just plain ridiculous moments we shared together for anything. You were my twenties, most likely the most defining decade of my life. I give you all the credit for helping me reach my new friend, my Thirties. And all I can ask, dear Thirties, is that you can be a bit kinder, deal softer blows, and allow me to simply be the girl I discovered during those precious years that will forever belong to my twenties.

With Love,

Abby, the 30-something

photo blog 4-4-13

As Good As New

I work at an organization that helps young adults faced with a cancer diagnosis get through their journey. Because of my position, I hear about and see individuals get diagnosed with cancer every day. I hear their stories, in many ways I walk down that same road I walked down, but this time it is with them. At times that is challenging. I would be lying if I said it wasn’t. The same emotions do appear. It is easy to fall back into that place of darkness and seclusion. But, at the same time, I can connect with these people in a way someone who has not faced cancer cannot and I find that to be invaluable in the work I do every day. I can tell them, “I know how you feel,” and really, really mean it. I can say, “I’ve been there,” and they are assured that I truly have. The kind of connection that makes between two people faced with similar challenges is what I believe the cancer community, in many ways, thrives on. It is what it is built upon. I don’t think it could operate any other way. This is because, at the end of the day, no one that has not gone through a doctor sitting them down and telling them that there is something inside their body that is trying to kill them, can understand, I mean truly understand what that person is going through. They haven’t received news that they have something that kills hundreds of thousands of people every year—something that takes mothers away from their children, that claims the lives of children, that does not discriminate, but rather goes after anyone it can—and because of this, they cannot truly understand what it is to fight cancer.

***

A funny thing happened the other night. I was getting ready for bed, winding down, and I realized something that stopped me in my tracks. Something had crept up on me and I was standing there, by my bed, and the most beautiful realization entered my head—I hadn’t thought about cancer in like 29 hours!! BUST OUT THE BAND PEOPLE! This is a freaking breakthrough!!!!!! This is monumental. This is acceptance-speech-worthy. I had done it. I had reached another step in the healing process.

Of course, I had thought about cancer in the abstract. In my line of work I am helping survivors every day, but I had not thought about my own cancer in like 29.25 hours.

When I first went back to work after my doctor essentially relieved me of fighting-cancer-duty, I was still a novice. I was just a young pup in cancer terms. Everything was still fresh, and as a result I worried about cancer and its aftermath every day—sometimes every minute (no exaggeration).

I have a friend at work that is a nine-year survivor and when I first started my job I found myself oddly envious of her achievement. In the cancer world—survivor years are the crème de la crème. They are so coveted you would do unspeakable things to get them. They mean you are OK in a much realer way than you feel you are. One day I was speaking with this survivor friend of mine about the fears and emotional torture survivorship can put you through and she said that eventually, there would be a day when I just didn’t think about what I had been through. I would go about my day thinking about things like the tasks I needed to get done, what I was going to have for lunch, and those cancer-crazy thoughts would not even enter my brain. I didn’t believe her. I believed, very strongly, that I would be a nut job forever.

Well, the verdict is still out on that, but I did achieve a cancer-free-mind for a day and it was simply remarkable. It took eight months since I finished treatment. But I did it. So, the next morning I woke up and thought, “OK I was able to accomplish that once. I am going to try it again.” This time it wasn’t so easy. You see, cancer has this way of playing crazy mind tricks on you. You think that if you do not give cancer enough credit it will somehow come for you. Like, if you aren’t scared out of your wits of it, it is comin’ for ya.

So, I approached the next day differently. Instead of just trying not to think about it, I actively gave myself permission to spend a day free of cancer-think. I thought, if I just took it one day at a time, if I just allowed myself a 24-hour reprieve that would be OK with the cancer gods. So I did just that! I embraced my free day and took full advantage of it. It felt great and I thought, “This is life. This is how I remember it. Just focusing on other things, not allowing fear to conquer, but rather embracing the ebb and flow of life.”

I do this every day now. I actively tell myself that I am not going to live in the past today. That today I am in the present. I am not going to live in fear, but rather I am going to give myself a break, focus on something else, just live.

***

Perhaps one of the reasons I have achieved these worry free days and feel more back to normal is because of something that happened a few weeks ago…I had my very last surgery over the holidays. It was a reconstructive surgery to essentially put the finishing touches on my breasts. (No, there is NOT a less creepy way to put it, I checked.) So, after 15 months everything is, at long last, back where it belongs from a physical standpoint. In the weeks leading up to my final surgery I did not find myself too concerned about it. I had become so used to feeling different about my body that I never really felt as though I would find complete peace with it again and I accepted that. That is a difficult thing to accept as a 29 year-old female still searching for a lot of missing variables in her life. But somehow I did.

I remember my surgeon telling me the same day he told me I had breast cancer what a mastectomy was. I honestly didn’t know. I had heard the word before, but I was completely ignorant to the whole process. I didn’t know the advances reconstructive surgery had made. I was unaware I would be made “as good as new.” But that is just what my surgeon assured me after he told me about my treatment plan—I would eventually have breasts again…nice ones! I write this part for my many survivor sisters out there that are just now receiving word that they have breast cancer. I write this to those who are just now trying to grapple with the concept of a mastectomy and what that means for their body image and their self image. I did not believe my surgeon when he told me I would be made as good as new one day. I did not believe him when he told me that one day I would look at myself in the mirror and like what I saw again when I took my shirt off.

I was very lucky to have one of the most amazing plastic surgeons in my corner. He has told me, “I am just a man. I don’t have a magic wand.” But I am convinced he does because he is extraordinarily good at what he does. He is simply the best. The day after my most recent surgery my mom and I decided to take off the bandages and see what it all looked like under there. I was convinced my body would require my mind to, once again, adjust. But, when I took off the bandages and stood there in front of the mirror, over a year after I had essentially said goodbye to my old body the night before my mastectomy, I sat there in disbelief. Not only was I tolerant with what I saw, I liked what I saw. I was completely blown away.

This blog post is not to toot my own horn about how great I look. (OK maybe it is a little.) But the main goal of this post is to tell other women facing breast cancer that are kicking off their cancer journey with a mastectomy—you will like your body again. It took me awhile and several surgeries, but I like my body, no I love it for getting me through cancer, and I love what I look like again at long last. The scars have faded and as I said in my very first blog post, all the ladies beside me in assisted living someday are going to be so jealous of my extraordinarily perky breasts.

So, for any of you reading this facing your own journey, I have been there. Right where you are. Sad about the surgery, but knowing it is necessary to save your life. And, I guess, my point is to say that it does get better. The scars heal, the implants go in, and eventually you will find yourself getting ready for bed and realize cancer didn’t even enter your mind today and you will be grateful knowing that, and stronger because of what you have been through, and you will be, at long last, as good as new. 

 

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Time

I remember the night I realized that I was going to die. I was nine years old.

I have been an insomniac my entire life. The whole concept of a bedtime never made sense to me. When I would lay my head down on my pillow at night, instead of drifting off to sleep like most carefree children, I would think for hours upon hours about everything—letting my mind wander to wherever it pleased. I just couldn’t shut my mind off. I had always been an avid reader with trips to the library with my mother being a weekly ritual. I would lose myself in the pages of my books accepting the worlds they offered to me and entering into them gladly. I found myself entirely at peace there, never wanting to leave. My mom, knowing I could not sleep as much as I tried to every night, instilled a new bedtime rule: I had to be in bed at 8:30, but I was allowed to stay up as late as I wanted as long as I was reading. That was the coolest thing ever, I thought. And so it began.

I kept this reading lamp attached to my bed. It was pink and I had it until college until it burned off the nose of my favorite stuffed animal, Ross, and then I retired it. But, underneath that lamp, reading through whatever book I had opened that week, I felt the most comfortable.

One night, during my nightly reading period, I ran into a boy losing his mother in one of my books. She died in a car accident and I remember being completely jolted. Now, I was nine years old so it was not like I had never encountered the concept of death before. People died, animals died, plants died. In the abstract I got it. And when my pet hamster died, I experienced it. But for some reason, this time I allowed my mind to wander for just a little bit too long and realized that one day, I too will die.

I hurried out of my room and ran up the stairs to my parents’ bedroom. This, too, had become a nightly ritual. Now, as though insomnia was not bad enough, often, when I was finally able to drift off to sleep, I would have nightmares and be shaken awake by my own tears and screams. I would rush to my parents’ room and shake my mom awake, telling her about the most recent trauma I had come across in my dreams. She would tell me it was all OK and coax me back down to my room, or at least to the foot of my parents’ bed where I often found myself in the morning when my dad would almost annihilate me by tromping on me. He was, and still is, a heavy sleeper and quite often he would not have even heard my nightly visit and would only realize it had taken place when he nearly stepped on me the next day.

This night, the night I realized death was real, however, was different. Instead of going to my mom, I went straight to my dad’s side of the bed. This was a serious matter and I needed my father. I generally shook my mother awake after my nightmares because she was honestly the easier one of the two to wake. I was practical at nine years old and my dad was a heavy sleeper and no matter how gently I tried to wake him, he usually did not take it very well. It was much like you would feel if you tried to ease a bear out of hibernation, they have been in such a deep slumber that things just don’t go well when they arise. Regardless, I needed to discuss death and I needed to discuss it now. So I woke my father. At first I remember he was flustered and confused, but he saw my face red and puffy from the tears and I was pretty adorable as a kid, so I saw his face quickly soften with understanding and love. “Dad,” I said. “I am going to die.”

Dad and I had often had tough conversations. My fascination with God, and the beginning of the universe, were often things I needed to discuss. When did the universe begin? And before that what was there? We would talk for hours and sometimes satisfy my hunger for the unknown, but often would have to just move on and hope I would shut up or become distracted.  Tonight was no such night. I needed answers.

My dad asked me for more information and I explained that I just realized that, in fact, I am going to die one day and it terrified me. I had practical concerns like I didn’t want bugs to crawl through me if I am buried and how am I going to get to heaven if I am just a bunch of bones? And furthermore I just didn’t want to die. Ever. Most of us don’t.

We discussed my concerns and I expressed my desire to be put on ice if I did have to die. He said that he was sure technology would advance and that would become a viable option. And then he said what comforted me the most when I said I was going to die, “Yes, but you won’t for a very, very long time.” I looked at him and took solace in these words. That helps. If I do have to die, which I still don’t want to, it would not be for a very, very long time. So, I can live with that.

A few days after I was diagnosed with cancer I recalled this conversation with my dad almost twenty years prior. I had obviously crept forward in the timeline of my life so perhaps I wasn’t going to die for a “very long time” instead of a “very, very long time.” But still, I was young. Didn’t I have more time? It was like I was nine years old again being shaken awake by the reality of death. It happens. To all of us. So now what?

Cancer has a way of showing us that we need more than just some time. Time is just time. We all need something more fulfilling than that.

With a breast cancer diagnosis, it is not all over when your oncologist calls you with news that you are cancer-free after battling the disease for months or years. You then enter this “watch and wait” period where you literally hold your breath, just praying the cancer won’t return. My breast cancer type was “triple negative.” Whenever I tell another breast cancer survivor this fact their eyes get wide and there is visible concern in their eyes because they know that is a bad one. Yes, they are all bad, but triple negative breast cancer has the unfortunate reputation of being extremely aggressive—extremely bad. As if that news is not bad enough, there are no post-treatment medications that most other breast cancer survivors stay on for several years to decrease the chance of recurrence. So I have no “safety net” so-to-speak. My oncologist just waved goodbye and shoved me out into the real world.

I have already had a significant scare since my treatment ended. A few months ago I had severe pain in my upper back. It didn’t go away for months and I started to worry. I told my oncologist about the pain and we waited it out for a few more weeks, but the pain was just not going away. Finally, my oncologist told me it would be useful to get an MRI. And then he said it, “to rule out metastasis.” Metastasis is my least favorite word. I hate it more than cancer. I hate it more than asparagus. I hate it. So then, of course, my mind goes to worst case scenarios and I start trying to comfort myself but have no success because I am scared out of my mind. Luckily, the scans came back clear and I moved on slowly and carefully with my nerves eased a tad.

The fear boils down to the extreme level of uncertainty one struggles with every day. I can have a pain in my back and it could be a muscle pull or it could be that my cancer has returned. Or I could feel tired one day and it could be that I stayed up too late reading the night before or the cancer has returned. One just never knows. Words fail to truly express how tough that can be on a person’s psyche. The other day I was looking at myself in the mirror and checking out my hair growth and a thought shot through my head, “I hope I don’t die before I can grow my hair back out to ‘ponytail’ length.” It is unfortunate that my thoughts go there, but having spoken to breast cancer survivor friends of mine I have found that these thoughts, and living with this degree of fear, is very normal.

I feel like I was good at fighting cancer. I wore the pink wig, I rocked the bald head, I joked about my crazy perky boobs, I made lifelong friends with my healthcare providers. I was a cancer cheerleader in every essence of that concept. I fear, however, that I am failing at this whole survivorship thing. Survivor friends of mine assure me that it just takes time, but how much time?

There we go again. Time. I want more than that.

If I were told tomorrow that my time is being cut short, I would want my story to have helped someone. I would want someone going down a tough road to have found comfort in the words I have written in this blog during my war with cancer. Sometimes I feel as though I have fallen short when some of the closest people to me have come out on the other side of this experience not remotely understanding what I have been through and what I still deal with every minute. I feel this heavy burden to help those going through this journey, but sometimes I fail myself when I succumb to the fear that is cancer and its aftermath. I want to see my nephew grow up and get married. I want to see my niece grow up and become a stand-up comedian, which I have determined is the road she is heading down. But I guess, before any of that happens, I just want them and those close to me to know I love them and I find comfort knowing, without a doubt, that they do.

At the end of the day, I understand that all our days are numbered. When I was first diagnosed with cancer, I often got the comforting words that yes, cancer sucks and you can die from it, but hey, “you could step outside tomorrow and be hit by a bus!!!” Oh, ok! Then what am I stressing for? But there is one thing I know for sure, that if I have one day left on this earth or 90 years, I want to surround myself with those people I hold dear and make sure they know I love them. Because time is just time, but spending it experiencing that ever-precious time with those you love—that is when you are truly living. 

Forward Progress

It all began the other day when I was sitting at my desk in my office.

REWIND!

Office, you ask? Yes, office! I am no longer living off my parents (Hallelujah!!!). After almost a year of living at home and receiving treatment for breast cancer I am part human again…I put my big girl pant(ie)s on and got a job! I am doing advocacy work for young adults with cancer at a non-profit organization based in Baltimore, Maryland. I managed to move and get an apartment in a nice, safe (and no, I have not watched “The Wire” yet) part of town and I have a splendid roommate, fabulous co-workers, and life is just naturally unfolding for me in a positive direction and I am very thankful for that.

Ok, where were we…Oh yes. I was sitting at my desk in my office wearing my skinny jeans.

REWIND!

One of the many fabulous perks of working at a non-profit organization is the casual work environment. We get to wear jeans to work. Very cool.

Ok, where were we…Oh yes, skinny jeans.  I was sitting at my desk one morning, doing my thing, catching up on emails, drinkin’ my kale juice, when I noticed my skinny jeans felt tight. Duh, you are saying to yourself right now…they are skinny jeans. They were created to be tight! But I am telling you I have been working out faithfully EVERY DAY, I have been devotedly drinking my green juice, and I am not even gonna lie—I look good. So the jeans weren’t tight because I had gained weight, rather they felt tight in just one area in particular—my right leg.

My right side and I have not been getting along for about a year now. You see, my right side is where my cancer originated—in my right breast to be specific. So on top of having a bilateral mastectomy a year ago, I had a right lymph node dissection which means my surgeon pulled about 18 or so lymph nodes from my right arm. When I was first diagnosed I had no idea what lymph nodes did. Now, I am an expert. Lymph nodes are your body’s drainage system. They keep things moving and flowing, and without them that fluid has nowhere to go, thus resulting in swelling. So a major risk after a mastectomy accompanied by a lymph node dissection is lymphedema; which is swelling in your arm (it can be minor swelling, it can be major swelling, it just depends).

I have been pretty crazy when it comes to protecting my arm from swelling. I did not fly in an airplane for an entire year to protect my arm (pressurized cabin—never a good thing). I am that crazy person in the gym on the treadmill doing my arm exercises specifically for lymphedema prevention that make me look like I am trying to spread my wings and take flight. I do whatever I can to lower my chances of developing it. I had noticed some tightness in my leg a few weeks prior and just figured it was the new pair of jeans I had just purchased. But this day, when I felt it again, I had a different pair of jeans on and it still felt tight.

And so, I immediately diagnosed myself with lymphedema in my leg. This was all before 9:15 in the morning. Like a madwoman I slammed my laptop shut and ran out of my office building. I dialed my mom on my cell phone, she didn’t answer. Then, I performed a quick internet search for lymphedema specialists in Baltimore and called several offices trying to get seen that day. No one had an opening. Next, I rushed to a drug store across the street and bought measuring tape. I literally sprinted back to my office, ran to the bathroom, peeled/chiseled off my skinny jeans and was in the bathroom stall of my building, in my underwear, measuring the circumference of my right leg to see if it was different than that of my other leg to determine if there was swelling. No difference. Hmm. That seemed strange.

I finally composed myself (and put my pants back on) and headed back to my desk. It made no sense to me. Something was wrong. Then I remembered my sister had a friend who was a lymphedema specialist (I know, why didn’t I start with her?!?!). I immediately emailed her telling her my symptoms, telling her I was getting on an airplane the following day, and telling her I realized I am a madwoman but please disregard that for the time being and just help me. Like an angel sent from heaven she responded rather quickly and the first words of the email were, “It’s NOT lymphedema.” After a surgery such as mine lymphedema occurs in the arm, breast or back—not your calf of your leg, she assured me. And then I started crying…not because of the lymphedema scare, but because this is how life is for me right now.

Instead of worrying about what my weekend plans are like normal twentysomethings, my concerns these days are much bigger and they generally revolve around recurrence and side effects of treatment. Because of what I have been through, it is easy for a tight feeling calf muscle to snowball into diagnosing myself with something I most likely don’t have. After cancer, you realize how quickly your life can change, how incredibly fragile it is, and how terrifying a realization that can be.

I have read that the first year after treatment is not surprisingly the toughest when it comes to the emotional roller coaster cancer shoves you down. Honestly, the myriad emotions I face every day are in many ways much tougher than those I faced during treatment. During treatment, my life was structured around hospital visits, chemo days, and doctor check-ups. My job was to beat cancer. Now, I am just out there with all you normal people, living in the real world, but feeling like a complete impostor.

I believe that many of those close to me think that now that treatment is over we just go back to normal, but that just is not how it is. That is not how it will ever be. I wish that I did not have these fears of what if the cancer comes back, what if my arm swells up, am I going to be able to have children, will my scars ever fade, etc. But right now I still think about cancer every moment and I still have so very far to go.

Although I have these moments of immobilizing fear, I also live life much differently now. After cancer, your life changes. You “GET it” in a real and often overwhelming way. You see life for what it is—beautiful, simple, and just waiting to be experienced. You kind of go back to your childhood in a way where everything is full of promise because you are just so incredibly thankful to be alive and to be able to experience that moment you are in right then. I often wonder if I would have ever arrived at this degree of clarity without facing cancer. Probably not.

The last few weeks have been completely wonderful in a lot of ways. Getting my independence back, exploring a new city, and reconnecting with old friends has been invaluable to me through the healing process. This time has been tough, however, from a survivor standpoint. Branching out and starting fresh is tough. As a young adult with cancer, your life simply stops for a moment. For me, that moment was a year where life wasn’t my life at all—it was just a void space in my calendar when I was fighting for my life. When you reenter society, there is a learning curve and you encounter things you have to accept. Survivorship is often not the biggest issue discussed in the cancer equation. Often reaching survivorship—just getting there—is, but once you get there you often feel as though you have been dropped off a cliff. I know I did, and in many ways I still do.

My advice is simple: Do what you need to do. Talking to my new friends in my network of young adult survivors, we have all sort of come to the same conclusion. We are just trying to figure it out, trying to cope, trying to live, and trying to make some forward progress. On a day-to-day basis, a constant reminder of how different your life has become presents itself in your personal relationships. Most of your closest friends just have not had to go through what you have had to go through, so unfortunately they cannot understand where you are coming from. I have discovered that during my journey—that has been one of the most difficult parts of this entire mess. Your close friends have seen you suffer; they have been by your side as you feel sick, they have kissed your bald head, but they still haven’t been “there.” “There” being that excruciatingly dark place only cancer can take you. With that being said, there is a strain that can be placed on your personal relationships that you just cannot avoid. You go into the cancer fight one person and you come out a completely different one. No one told me that at the beginning of this endeavor, and I am only now realizing how true that really is.

Don’t get me wrong, I still love and cherish my relationships—many of them have just become different. What I am getting used to is not allowing that to scare me. I refuse to. This is my new life, what has happened, both good and bad, has happened, but I am here, I am living, I am writing, I am laughing, I am smiling, and most importantly, I am thriving in cancer’s face. I am making forward progress.