I Haven’t Left Cancerland: Leah’s Story
Perhaps, before you were diagnosed with cancer, you were just like I was. Busy. Busy taking care of your home, your family, your job, sweating the small stuff and desperately searching for a little “me” time. Then suddenly time stops while it also spins out of control and you are faced with more “me” time then you ever wanted.
I was 39 years old in April 2012 when I was diagnosed with Invasive Ductal Carcinoma. Breast cancer. And I was lucky. Lucky that I didn’t wait until age 40 for my first mammogram, lucky that I had a history of benign breast tumors, lucky that I had a gynecologist who was proactive and forward thinking when it came to those benign tumors, and lucky that Breast Health Services at LVH never treated me like a number but instead listened to my fears, answered my questions and performed thorough diagnostic tests.
My husband was with me when we were told I had cancer. I squeezed his hand so tight and kept asking if I could “leave now” as my Patient Navigator tried to explain to me what my next steps were. All I can really remember about that day was focusing on the word “invasive.” The Navigator made an appointment for me with a breast surgeon for the following Monday, and I was finally allowed to leave.
Thus began the longest weekend of my life. I lost my ability to speak. I could not talk. I could not make a decisionand I could not stop crying. What I had to do though, was explain to my (then) seven-year-old daughter why mommy was so upset. My husband and I chose to be honest with her while shielding her from the details. Throughout my entire walk through cancerland (that is what I like to call it) we told her the truth. Some people felt we were too honest with her but I do believe we did the right thing. And I also believe that she is a better, more empathetic child now because we were honest.
Meeting with the breast surgeon was a lot of “if this, then that” kind of talk. My biopsy results were not yet in, so a plan couldn’t be made. Two days later, I got the final biopsy results; over the phone I was told that I was estrogen positive and HER2+. I was told I would need to make a decision regarding surgery soon, that I would have chemo, I would lose my hair and most likely would have radiation therapy.
Choosing a bilateral mastectomy was one of the easiest choices I ever made. My cancer was hiding behind a known benign tumor and I wasn’t going to give any future naughty cells a place to hide. It was six weeks between diagnosis and surgery. During that time I insisted on meeting all doctors that were tasked with saving my life. I wanted to make sure I liked them, and I wanted to make sure they understood that I wouldn’t blindly follow orders. I would ask questions and seek second opinions if I felt I should. Also during that time I lost 15 pounds. I was so sad I couldn’t eat. And I still couldn’t speak. I started blogging almost daily so that if someone wanted to know how I was they could read my blog. I did not want to answer the “how are you” question, nor did I want to have the same conversation over and over again.
My surgery was in May 2012. Recovery was difficult for me. My family moved a recliner into our bedroom, and that is where I slept for about five weeks. During that time a friend set up a meal program for us through a free online service called takethemameal.com. That was a life saver. My husband was suddenly thrust into the role of sole bread-winner and primary parent, and having a hot, ready-to-eat meal three times a week while I recovered saved us both time and money.
Once recovered from surgery, I began chemo. Six infusions over a period of 18 weeks with weekly infusions of Herceptin (a targeted therapy medication specifically to fight my HER2+ status and what I truly believed saved my life.) Knowing my hair was going to fall out, I shaved it all off a week after the first chemo. I had great hair. Long. Curly. And then suddenly I had no hair. I didn’t recognize the woman in the mirror and I became adept at ignoring that strange reflection. No one was allowed to see my bald head unless they were family. Even during the hot summer days, I kept it covered. I was still so sad. So certain that my life was ending. I wasn’t “brave” or “strong” and I hated when people said that to me. I was terrified, every day, terrified, and I believed that all I was doing was just prolonging the inevitable. I was convinced I would soon die.
Somewhere around my fifth chemo treatment something inside of me changed. I allowed my friend to take a picture of me getting my chemo infusion with my bald head on full display. That picture soon made the rounds – on my blog, on facebook, in emails. I began to think of myself as a “warrior” and not as a woman who was about to die. I began to count my blessings – the meals that were still delivered regularly to my family, the free home cleaning services I had through cleaningforareason.org, the child care so many friends and family provided, the free wig (that I never wore) through the American Cancer Society, and the bag of goodies from the Cancer Support Community during a Look Good Feel Better class.
It finally became obvious that I was going to be OK, eventually. I just had to finish the hard stuff. And (for me) chemo was the hardest stuff. Once that was done, I continued with Herceptin infusions until July 2013. Those infusions were easy, with minimal side effects. I used that hour as “me” time to catch up on my reading (something I didn’t have the concentration for while on chemo.)
Six weeks after chemo ended I began radiation treatment, 34 visits for a total of 72 zaps Monday through Friday (except Christmas and New Years day…cuz…ya’ know…cancer doesn’t spread on holidays or weekends). Radiation was the one time I got a second opinion. I wasn’t sure about it. Mostly because I didn’t want to prolong my reconstruction surgery. The second opinion MD also recommended radiation and so I did it. Ultimately I chose to do it because if my cancer were to come back I didn’t want to say “shoot… I should have…” I wanted to throw everything I could at my cancer.
Reconstruction surgery was almost a year after my original surgery. And to look at me now you would never guess I had breast cancer. I look normal. I feel normal. I have hair.
But I haven’t left cancerland. I have stayed. I have stayed to be a sounding board for other cancer patients. I have stayed to help, to motivate and to encourage those who follow in my footsteps. My family and I have started a local nonprofit called The CHEMO Bag (Caring. Helping. Encouraging. Motivating. Others) and we provide the local infusion centers with gift bags to be given to the patients.
Cancer has changed me. For the better. I don’t sweat the small stuff anymore. I live more. I laugh more. I love more. I judge less. I have found that I can move on and stay in cancerland at the same time.