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