Introducing Jan Crawford, Breast Cancer Survivor

Photo Caption: Jan Crawford, and her daughter Cortney Crawford stand with James Lechner, MD, medical director of the Providence Regional Cancer System, following his lecture at the Cancer Survivor Event in June of 2011.

I've had the honor of meeting Jan Crawford three separate times in the past month. When we met most recently, she was excited to share the news about her latest accomplishment. She had just been credentialed as a Certified Cancer Exercise Specialist. This meant she could officially start turning her passion into a profession. She wants to use her exercise expertise and her personal experience with cancer to help others figure out how activity can help them get through cancer, too.

Jan's path towards this goal started three years ago. In October 2007, she had a mammogram that revealed lumps in her breasts. She wasn't overly worried, though. Ever since high school, she had dealt with an unusual number of benign breast lumps. However, this time was a little different. She decided she wanted to end the underlying stress she felt whenever she found a lump. Her solution: to undergo a prophylactic (preventive) double mastectomy.

Her surgery took place on December 19, 2007. Expecting a routine recovery and a little downtime to enjoy the holidays, she was devastated to learn instead that she had breast cancer -- including aggressive cancer on her right side. Her surgeon told her she needed more surgery as soon as possible, and she was back in the operating room the next day.

In January she started chemotherapy treatments. And in May she underwent reconstructive breast surgery. All of this left her unable to work for 10 months; not surprising due to her on-the-feet job as a flight attendant. She finally went back to work, but then learned that surgery was not quite finished for her. Possible side effects of her chemotherapy drugs included uterine or endometrial cancers, so she decided to have a hysterectomy. She says she doesn't regret that decision because her physician found suspicious areas during surgery that may have led to cancer in the not-so-distant future.

Today Jan talks easily about her cancer, treatment and the many emotional and psychological issues that have accompanied her experience. She emphasizes how much exercise helped her cope with what she was going through, including the "fog of cancer" that she felt stuck in frequently. Now she wants to help other people with cancer discover how activity can improve the quality of their lives, too. She's currently exploring the practical side of how she can make this happen, and hopes to have a place available soon where she can offer guided exercise sessions for other cancer survivors.

In future blog entries that Jan is planning on writing, she'll talk more about her experiences as a breast cancer survivor and her dream of sharing the benefits of exercise with other survivors.

Please, welcome Jan to the blog.

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A little lotion and a lot of hope

Now that we’re finally getting some sunshine in Western Washington, I’ve been reaching for the suntan lotion more frequently.

Slathering it on, especially for the first time each summer, always reminds me of winter in Ohio when I was 13 years old.

It was then, on January 25th, that I learned I had cancer. I lived in Central Ohio where winter weather was usually less than pleasant. Combine that with the numerous trips I would soon be making to Children’s Hospital hematology/oncology clinic, and that winter was truly grim.

One of the things that kept me going was the hope that I’d be well enough to join my family on our annual Spring Break vacation to Sanibel Island, Florida. I loved Sanibel – we had visited the island every year for five years in a row.

Best known for the amazing array of sea shells that wash up on its Gulf Coast beaches, Sanibel boasted other treasures, too. Along the shore we would watch for dolphins or hike to the old lighthouse that was an island landmark. And driving through the island’s wildlife refuge, we looked for exotic birds as well as alligators sunning on the banks of the inland waterways.

Our Sanibel vacation was scheduled for end of March. Before that date some of my most intense courses of cancer treatment were scheduled. During February, my first full month of treatment, I visited the cancer clinic three times a week for chemotherapy. For three weeks in March, I went to another hospital in town to receive daily radiation therapy.

The chemo in February made me feel pretty awful. For most of the day, I just lay on the couch sleeping or watching TV. My only breaks from reality happened during trips to the bathroom. It was there that my mom stashed the suntan lotion under the sink.

Whenever I was in the bathroom, I’d pull out one of the bottles, unscrew the top, take a deep whiff and pretend I was lying in the sun on Sanibel. I’d also rub some lotion on my hands so I could continue to smell it, and dream, once I was back on the couch.

My long-ago visits to smell the lotion have made it into family lore – including my current family of three children and husband. My kids think it’s pretty funny that mom used to hang out in the bathroom just so she could sniff suntan lotion.

Yet for me those little pick-me-up trips – and my visions of Florida sunshine – helped get me through those grueling first months of treatment. And, I’m happy to report, I did get to go on that vacation to Sanibel Island.

What about you? Do you have a memory that you go back to, helping you through the tough times?

Coping with cancer paranoia

As a cancer survivor, I worry about getting cancer again. But I worry even more about my kids getting it. When my first child, Will, was ten months old I noticed tiny red spots on his arms. In a panic, I rushed him to the pediatrician. (Red spots on my legs – which meant my blood wasn’t clotting properly – were one of the first signs of my childhood leukemia).

The doctor reassured me that Will’s spots were harmless. He also reminded me that cancer in children is really quite rare. Rationally I knew he was right, but I also knew better than most that – yes – it may be rare, but it does happen.

My next scare happened a few years later with Will’s younger brother. My husband and I noticed a lump on Jonathan’s lower left leg. I googled “kids, lumps and cancer” on the internet. Sarcoma came up – a cancer of the soft tissue. What I read about sarcomas in children was not good. My stomach started doing somersaults, and the rest of me felt like crumpling on the floor and pretending this wasn’t happening.

We took Jonathan to the pediatrician, who wasn’t as reassuring as he was with Will. Instead he referred us to a surgeon at Children’s Hospital. When we saw him, the surgeon couldn’t immediately diagnose the problem, so he recommended we bring Jonathan back for testing.

After a long week of waiting, an ultrasound showed no sign of cancer. The lump was, weirdly, caused by an “unidentified foreign object” – possibly a splinter of wood – that had lodged in Jonathan’s leg. Since there was no infection or pain, he would not have to undergo surgery or treatment…big sigh of relief.

With the latest kid crisis behind me, I was free to leave the hospital. But I wasn’t free of my cancer paranoia. My kids, unfortunately, aren’t the only recipients. My husband has been victim to it, and if my parents, brother and nieces lived closer, I’m sure they would be, too.

Not surprisingly, I also turn these fears inward and worry about getting cancer again myself. Any odd lump, spot or pain in my body can send me into high-anxiety mode. I went online and typed in “cancer paranoia” to find out if others experience this, too. Many results came up. Some were from people who’d never had cancer and were terrified of getting it; others were from survivors who’d had it and were terrified of it returning.

I couldn’t find anything about transferring cancer paranoia onto family members, but I’m guessing I’m not alone. Fortunately, in my own family, my husband (who’s known me for 23 years) has long since learned to deal with my random moments of paranoia. And my kids are still too young to notice when those moments occur. As for me, I’ve come to realize the paranoia is something I’ll likely deal with, to some extent, for the rest of my life. I try to keep it in check and not let it impact me or family members too much. It’s just a residual effect of having cancer and probably not something I’ll ever be able to shake completely.

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.