My story: Running through cancer

I’m 37. I’m a wife, a runner, a cyclist, an overall fitness enthusiast, and a project manager. But now I have a much bigger title – Breast Cancer Survivor.

In 2009, I was stuck. I was married, I had a good job and yet I didn’t feel fulfilled. So I decided to take up running. I ran my first marathon in October of 2009 and I had an awesome time so I immediately signed up for a ½ marathon for the next month. It was that ½ marathon that I decided 2010 was going to be my year. I was turning 35 and I was going to be unstuck. It was time for me to do something.

My plan was to sign up for an event for each month – whether it be full, ½ or century ride. In February of 2010 I was on track and ran a ½ marathon in Jacksonville, FL called "26.2 with Donna" (that's me, to the right, at the race). This marathon is known as the marathon to finish breast cancer. I was there by myself and ended up meeting a wonderful couple from Alabama and it turns out the wife was a breast cancer survivor. I didn’t really know what to say. Everyone in my family who had breast cancer didn’t survive or had a really rough time going through treatment. I asked her how she got through it. How did she survive? She said she ran – her and her husband ran every day through treatment. I was completely amazed. As she told me this, I began to think of myself – thankful for my health and ability to run and be active. I also thought if I ever have to go through cancer, I want to run – I hope I can run. If she could do it, I could too.

We arrived at the starting line and I was going through my usual routine – checking shoe laces, going to the bathroom, but I couldn't stop thinking about that survivor. I also thought about the small lump in my left breast that almost a year before my doctor said it was nothing. If 2010 was going to be my year, I need to get this checked and make sure it's nothing serious. A few months went by and I finally found a doctor that I was comfortable with and who was willing to ‘go through the motions’ to see what the lump was. I was 35. Too young for a mammogram, too young for cancer, right? Well, not really. I had a ultrasound, mammogram and then a biopsy.

On June 4th, the voice on the other end of the phone apologized but said it was cancer. All those years where everyone told me I wasn’t at risk – my gut was telling me that I was at risk. Both grandmother’s had breast cancer – one diagnosed at 28 the other at 60; my aunt, 28; and my cousin, 30. Unfortunately I lost my grandmother and aunt before I really got to know them - they died at 34. The doctors I had before told me I wasn’t at risk because the cancer was on my father’s side. It turns out after having genetic testing I’m BRCA 2 positive which means I carry the breast cancer gene.

I had my double mastectomy on July 26th and recovered quite well – thanks to my enthusiasm for staying in shape and eating properly. I began chemo on September 2nd and finished on November 29th. I couldn’t let cancer take me or stop me from what I love doing best. If that woman at the race in February hadn’t told me her story, well I don’t know that I would have gone into with a positive attitude. I went on to complete 2010 with reaching my goal of 12 events – actually 13 if you count the breast cancer. I accomplished my goal and I survived. I didn’t let cancer take me away.

Part I: Understanding the fear your cancer will come back

Editor's Note: We have broken up Cobie's post into two parts, "Understanding the fear your cancer will come back" and "Five strategies for coping with fear of recurrence." We will post Part II on Friday. As always, feel free to leave comments or questions at the end of this post or in our Patient Discussion Forums.

One of the most troubling aspects of ending cancer treatment is worrying that the cancer will come back; indeed some studies suggest that up to 90% of cancer patients report fear of recurrence. Certain events may trigger or exacerbate the fear:

• Doctor visits
• Medical tests
• Media reports about cancer
• Anniversary dates of the diagnosis, ending treatment, etc.
• Hearing that a friend or loved one has been diagnosed

With time, the fear usually lessens. But it can be quite debilitating and disruptive. You may focus excessively on your body and/or ambiguous symptoms and leap to catastrophic conclusions. You may feel you cannot plan for the future, experience despair and feel emotionally paralyzed.

Life after cancer has been described as living with the sword of Damocles over your head. [Greek legend describes that Damocles was a courtier to King Dionysius. Damocles was in awe of the King's great fortune in life, so the King invited him to exchange places with him for a day. During a lavish banquet, Damocles discovered that a sword hung over his head suspended by a single hair. Only then did he understand the constant and anxious dread that a King truly feels. His fear was so great that he could no longer enjoy the riches around him.]

My doctoral dissertation focused on fear of recurrence. A major finding was that the stage of disease/prognosis was not related to anxiety about recurrence. Some women with early stage disease and an excellent prognosis were more fearful than those with later stage disease. Your fear may not align with data or statistics on recurrence likelihood, but that does not mean the fear is not real and upsetting.

Feeling fear that your cancer will come back is completely normal. In our next post I'll share with you five strategies for coping with the fear of recurrence.

You might also like:

• Tales of a cancer control freak
• Who is a cancer survivor? What's in a name?

Being your own best advocate

I recently agreed to write a short item for a Web site highlighting issues that impact adult survivors of childhood cancer. I was asked to come up with something for the Web site’s “Advocacy” section. I said, “Sure, I can do that,” without really thinking about it, but later found the topic a little challenging.

I realized that advocacy to me meant writing letters to legislators or visiting the state capitol to lobby for a particular issue – neither of which I’d done for any cancer-related causes. As I was struggling with what to write, I started broadening my definition of advocacy. I decided it could also mean just getting the information you need to make good decisions about whatever cause you’re supporting – including your health.

Here’s what I wrote:

I ended treatment for leukemia in 1983 when I was 16. At the time there weren’t many longtime survivors of childhood cancer, and there wasn’t much research about future health problems I might face as a survivor. So over the years it’s been up to me to figure out how new research findings about late effects of treatment might impact my health.

For instance, when I heard that female survivors of childhood cancer might be at risk of second cancers like breast cancer, I got pretty anxious. And when I decided to have kids, I wondered if I’d have fertility problems. But after reading and talking to oncologists, I learned that neither issue was likely to affect me based on the type of radiation therapy and chemotherapy drugs I had received. (Plus I now have two beautiful boys to prove that, fortunately, fertility wasn’t an issue.)

Many resources exist today for people (kids and adults) who are ending cancer treatment – including follow-up plans with information about what to monitor in the future. But I still believe it’s up to each person to be their own advocate, to seek out the experts and information that will keep them in-the-know about their health needs after cancer. For me, making sure I’m informed about medical issues that could impact me has helped me feel proactive about my health and calmed my anxieties about it.

Special Note: Soon after writing the above entry, I stumbled across a great resource about self advocacy from the National Coalition of Cancer Survivors (NCCS). It’s called Self Advocacy: A Cancer Survivor’s Handbook. You can download or order the book for free: NCCS believes that cancer becomes a much lesser foe when faced by informed and knowledgeable health care consumers who know how to communicate their needs to those who can be helpful to them as they experience cancer. This handbook focuses on self-training steps and tools to assist and empower individuals dealing with cancer.

Honor thy caregiver

Recently another longtime cancer survivor responded to the blog entry I wrote called "Life After Cancer: 31 Years and Counting." He’s been a survivor for 51 years! First diagnosed with cancer in 1960, he’s also had to deal with two more cancer diagnoses, both in the past two years. (You can view his story by reading the comments section of this entry >>).

While sharing his story on the blog, he writes about his wife and how important she is to his “continued living” during his latest cancer challenges. He also praises all the people who are doing for others what his wife does for him: “I must take my hat off to all the caregivers out there. If it was not for you, a lot of us would have given up by now,” he writes.

I agree, and I don’t know how I would have made it through cancer without my own amazing caregivers. As a teenager, my parents filled that role – particularly my mom who handled the day-to-day responsibilities. She quit her job so she could come to the hospital with me for tests and procedures, and so she could be at home with me when the side effects of treatment kicked in. I know she was terrified about what was happening, but she kept up a strong front to protect me as well as her own sanity.

My dad grappled with his own set of emotions. He later told me about feeling scared silly; how every time I went in for a blood count, he couldn’t sleep the night before. He said his only relief, especially during the first few months of intense treatment, was to go to work each day and try not to think about my illness.

It wasn’t until I became a parent many years later that I started to understand what my mom and dad experienced. I don’t know what I would do if the same thing happened to one of my kids, and I will be forever grateful to my parents. Somehow they managed to get our family through and beyond that awful time in relatively decent shape.

In the years since then, I have dealt with a few emotional aftereffects of cancer. But I’ve been extremely lucky to end up with a wonderful husband who hasn’t shied away from me and my issues. My parents dealt head-on with what happened to me during treatment, but my husband has helped me cope with less tangible concerns – mood swings, worries about getting cancer again, weird physical reactions (like cringing if I’m touched on the hip bone where I used to have bone marrow tests) and other issues. None of these problems have been particularly fun for him, but he has supported me nonetheless.

And even though I’m not that great at showing it, I am so thankful to have him as my life partner and caregiver after treatment. I hope that all caregivers know – even when we forget to say it – how appreciated they are, how loved they are and how thankful we are to have them with us as we move together through different stages and strategies of coping with cancer.

Tales of a cancer control freak

After my cancer diagnosis as a teenager, I became a control freak. My once sloppy room was always neat, and I began to obsessively count calories. (I lost 20 pounds the first month of treatment and was determined to keep the weight off.) One year later, after working hard to get all A’s my first semester of high school, I decided I needed to get through the next 3 ½ years with a 4.0 grade point average.

By my sophomore year, I was constantly stressed – trying to keep my grades up, my weight down and my room spotless (not to mention undergoing chemotherapy at the same time). But I didn’t understand why I was heaping all this pressure on myself. A concerned guidance counselor pointed it out. She thought I was trying to control whatever I could in my life because I couldn’t control my cancer.

Her words made sense, but it wasn’t until I finished chemotherapy (spring of my Junior year) that I started to let myself relax a little. During my three years of treatment, I had felt like there was a tightly wound cord inside of me. Whenever I got upset, an imaginary person cranked the cord tighter and tighter until I could barely breathe. When treatment ended, the cord unwound just enough to let me take a deep breath and begin letting go of my need for control.

I graduated from high school and went to college, which I got through with my sanity mostly intact. After college I moved to New York City for my first job. It was there that stress crept back into my life – not surprising in a city where Type A personalities thrive. I loved the energy of the city, but it was a place that required constant alertness. Being on my own and supporting myself for the first time also added to my stress. To deal with the growing pressures I was feeling, I did what many anxiety-challenged New Yorkers do, I went to a psychiatrist.

Trekking across town via subway, then bus, to get to my weekly sessions was a little daunting, but seeing a psychiatrist was the best thing I could have done for myself. It helped me deal with my immediate stress, and – over the course of two years – uncovered feelings and fears about my disease that I’d never acknowledged, let alone talked about with anyone. I was finally confronting my cancer head-on and understanding the impact it had (and was still having) on me. Allowing myself to do this – especially with the help of a professionally trained specialist like my psychiatrist – was the first big step in regaining a healthier relationship with control as well as other aspects of my life.

You might also like:

• Life after cancer: 31 years and counting
• Take a minute, and just breathe