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.

 

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15 thoughts on “Forward Progress

  1. Abby, your post bring me back to the funniest and most appropriate quote about cancer survivorship that I ever read, that still resonates even after 7-years as a Survivor: “I always think brain tumor, until the Tylenol kicks in.” Keep living and thriving!!

  2. You ARE thriving, Abby! And thank God you are not the same person you were before. You are better in so many ways…. wiser, more empathetic, more aware of life, love, and blessings. And because of all that and more, you are an inspiration and a blessing to the rest of us in ways you never could have been before. Hugs to you!

  3. Abby, you are a wonderful writer! I so enjoy reading your blog. You are noticing how cancer has changed your out look on life and I get it. Not that I’ve had cancer but big things do that to you. I was thinking. . . She never would be working at the job she’s in if she hadn’t had cancer. She will probably be a much more more useful to other human beings with the insight that she has grown. As I have said, I remember you when you were a little girl following your parents around. It seems that you have grown into a wonderful woman. I’m pleased to have met you.

  4. Just saw an announcement of this event at the National Press Club on Monday – DC is not that far from Baltimore. Thought you might be interested in hearing what Roger Daltry and Pete Townshend are doing for kids with cancer. They are speaking at the National Press Club on Monday at 12:30 pm. Go to http://www.press.org to find out how to regiester.

  5. John 10;10 “The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have it more abundantly.”
    Dear beautiful young woman Abby, You have been given life abundantly. Praise God from whom all blessing flow!

  6. Dear Abby,
    I faced a difficult time when the doctor changed my follow up visits from every month to every 3 months! I didn’t think I could go that long without reassurance that all was well. I happened on a book at the store called How to Survive Between Office Visits!
    From one survivor to another, you WILL find your new “normal” – I promise. (Realize that it is just a setting on the clothes dryer). It will take time to understand your new body, too. It will take the most time to trust it again. Our body betrayed us by not shutting off a cell growth switch. Will it do that again? We don’t know so we pay close attention.
    Eventually, you’ll quit holding your breath. You might even get so busy, you’ll forget to schedule a check up and you will be SO shocked! I couldn’t believe I missed making a mammogram appointment for 2 years because I didn’t get the reminder postcard.
    One day you will wake up and later in the morning you’ll have a shocking realization that your first thought of the day WASN’T “Oh yeah, I had cancer.” You’ll notice the scars less and less. Most of us look better with clothes on anyway and if someone really loves you, the scars only show how precious your life is.
    You may have scares or setbacks but I am just so grateful to be here. Even 25 years after my original diagnosis, I still have some complications occasionally. (I just spent 3 days in Florida Hospital with my same GI pain so no food and there goes 8 pounds again!). I went back to work this week and realized that the most hectic, stressful, chaotic day in the lab is WAY better than being IN the hospital.
    The best thing about time passing is the perspective we develop. 1987 and 1988 were the most challenging 2 years of my life. The cancer routine consumed all my time and it was all I could see. Looking back after 25 years, it doesn’t seem as big anymore. Just like eternity in Heaven, our life on this earth, no matter how long or difficult, will be so insignificant in comparison.
    I praise God that I have been blessed with knowing such a strong cancer warrior. May He continue to bless you and all your family.
    Hugs and prayers, Sue

  7. Thank you for your thoughts! I just had my last day of chemo today. Radiation starts mid December. I hope to get back to work mid February. So glad that you are back to your independence! You are an inspiration. Thank you!

  8. Abby, you are a joy. Thank you for sharing your journey. So happy to hear you are doing well and are doing “normal” things at this writing. Blessings to you as you encourage others as you have encouraged me! Maryann Burns

  9. Forward progress is a good moto if you have cancer or not. Not taking like for granted and really enjoying the moment. I will never fully understand all you’ve been through, but I can completely appreciate all you have to say and the insight you have discovered on this journey. I’m lucky to have met you and been able to build a friendship. I know we are miles apart, but I’m still thinking about you!! Love ya Abbs!!!

  10. Abby, I appreciate your way with words concerning this journey that life has taken you on. Baltimore, Balmer, Merlon as the locals pronounce it, is a wonderful place. Check out Bertha’s Mussels in Fells Point, a very old and tasty restaurant.

  11. Thank you for allowing us to share in your journey, Abby. Your honesty, candor and humor give us a window-pane glimpse of what cancer looks like from the inside out. We each weave a different taspestry as we LIVE life…your’s is rich and colorful and beautiful! I continue to pray for you and others who are facing life changing obstacles. Today is another opportunity to life out God’s purpose for our life…thank you for blessing me and others with your purpose!!!

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